November 25, 2013
It has been over a month since I've written but we have been slowly settling back into life as we used to know it. Jimmy is feeling really good these days. His scar looks good and he hardly has any pain at all. He is finally back to work and we are taking life one day at a time. We are enjoying all of the little things in life that we took for granted before this terrible journey.
Life certainly has a new kind of meaning these days. We are all so thankful that Jimmy has gotten through this year as well as he did. At the beginning of 2013 we didn't know what to expect and of course, we feared the worst possible outcome. It has been a stressful, sad and traumatic year but I am so happy that he is alive and feeling better every day. I can't imagine life without him (even though there are days when I don't like him so much...LOL) and I can't imagine Logan not having his Dad around to watch him grown up.
I also have to say thank you to those of you who have read my blog. This has been so helpful for me to be able to write things down and say how I feel. I have written things in my blog that I wouldn't say directly to Jimmy for fear of hurting his feelings. Writing things down gave me the courage to lay it all out on the line and vent when I needed to do so. I would often write and cry at the same time because I didn't know what else to do. Writing this blog has really been my safe haven through all of this.
I am hopeful that, with God's help, we will never have to experience another year like 2013. I do not want to see Jimmy weak and helpless like he was at the end of chemotherapy treatments or how tired and incapacitated he was after radiation and surgery. I do not want to feel like my world is crumbling under my feet and there is nothing I can do about it. And, I definitely do not want our son, Logan, to have to experience the angst and sadness that he has experienced this year ever again. Watching him try to deal with Jimmy being sick broke my heart. In the beginning, we could try and shelter him from what was to come but when Jimmy started to get sick, lose his hair and become really tired and weak, we couldn't do that anymore. This year has really taken its toll on all of us and we are forever changed but we have become so much closer as a family and I am thankful for that.
So, I write today to say thank you, God, for allowing my family to have so much to be thankful for this coming Thanksgiving Day. For those of you who do not celebrate Thanksgiving Day, please take a moment to remember what you are thankful for in your life.
Jimmy will have his first scan after surgery next month. I will be sure to let all of you know how it goes.
HAPPY THANKSGIVING EVERYONE AND GOD BLESS!
Monday, November 25, 2013
Friday, October 11, 2013
A month after surgery...some more good news!
October 11, 2013
We are a month out after surgery. Here's what's been happening...
Jimmy was up and walking the day after surgery. There was that embarrassing moment in the hospital when he was walking down the hall and, lo and behold, his behind was hanging out the back of his hospital gown. Of course he was on pain killers so he really didn't care...ha! He stayed in the hospital for 3 days. When he came home, he was in A LOT of pain but continued to try and walk. Of course, he was doing way too much too soon and ended up having to take it much slower. This was the time when he really couldn't do much for himself and it was frustrating for him. He needed help getting his clothes on and off. He even needed me to put on his socks and shoes.
His follow-up appointment with the surgeon was 3 weeks after surgery so his stitches stayed in for that amount of time. We had to keep his incision covered at all times and wrapped when he took a shower to prevent infection. His doctor appointment came and he got his stitches out. Everything looked good and he only needed to keep the incision covered for a couple of days after that.
The doctor confirmed that the scans after surgery showed no signs of metastasis in his lungs. The nodules are still the same size...thank goodness! She told us that the tumor was 8 cm, so there was no shrinkage at all since the inception of treatment. We knew to expect this so this was not a surprise. She told us the tumor was mostly necrotic, so the chemo worked to kill the tumor. She also said she had to cut a significant amount of muscle and tissue from his hamstring. As for the margins, she got good margins except around the sciatic nerve where the tumor was attached. There were residual sarcoma cells found but she assured us it wasn't anything to worry about right now. As far as the doctor was concerned, Jimmy was good to go.
As the weeks have passed, Jimmy has started to feel better even though the pain is still pretty bad and he has a slight limp. Aside from the incident where he got his foot stuck in the door of his truck and pulled his hamstring pretty hard, he's been getting around okay. The swelling has gone down and the scar looks like its going to look pretty good. The area around the incision is still pretty hard but that's to be expected as everything heals on the inside. The doctor said to massage the area to help break up the scar tissue that would be forming inside. It took just about a full month before he was able to put his own shoes on again. It is amazing the little things you take for granted of being able to do that become so hard after surgery. Here's a pic I took today...the dark areas of skin around the incision are leftover from radiation discoloring the skin. The whole area looked like that before but it has slowly been coming off on its own. The area is still hairless and we've been told that it will most likely stay that way.
Jimmy's hair is back...thin but back. He got his first haircut last week and was really excited about it. It was some sense of normalcy that was coming back. His hair is so fine and baby like now. It was very wispy on the ends before his haircut but looks much better now. It also came back a little lighter than it was before treatment. As it grows and he gets more haircuts, it should come back thicker and closer to the texture that it was before as well. Jimmy is also looking forward to getting back to work on a regular basis and doing the things he likes to do...like working out again.
This has been a really long year and I want to thank everyone again for their support through all of this. Thanks again to the people in 42 different countries that have let our family come into their lives. I do hope my blog has helped someone who may be going through all of this right now and to let them know that they are not alone. I will continue to keep everyone posted on how Jimmy is doing.
We are a month out after surgery. Here's what's been happening...
Jimmy was up and walking the day after surgery. There was that embarrassing moment in the hospital when he was walking down the hall and, lo and behold, his behind was hanging out the back of his hospital gown. Of course he was on pain killers so he really didn't care...ha! He stayed in the hospital for 3 days. When he came home, he was in A LOT of pain but continued to try and walk. Of course, he was doing way too much too soon and ended up having to take it much slower. This was the time when he really couldn't do much for himself and it was frustrating for him. He needed help getting his clothes on and off. He even needed me to put on his socks and shoes.
His follow-up appointment with the surgeon was 3 weeks after surgery so his stitches stayed in for that amount of time. We had to keep his incision covered at all times and wrapped when he took a shower to prevent infection. His doctor appointment came and he got his stitches out. Everything looked good and he only needed to keep the incision covered for a couple of days after that.
The doctor confirmed that the scans after surgery showed no signs of metastasis in his lungs. The nodules are still the same size...thank goodness! She told us that the tumor was 8 cm, so there was no shrinkage at all since the inception of treatment. We knew to expect this so this was not a surprise. She told us the tumor was mostly necrotic, so the chemo worked to kill the tumor. She also said she had to cut a significant amount of muscle and tissue from his hamstring. As for the margins, she got good margins except around the sciatic nerve where the tumor was attached. There were residual sarcoma cells found but she assured us it wasn't anything to worry about right now. As far as the doctor was concerned, Jimmy was good to go.
As the weeks have passed, Jimmy has started to feel better even though the pain is still pretty bad and he has a slight limp. Aside from the incident where he got his foot stuck in the door of his truck and pulled his hamstring pretty hard, he's been getting around okay. The swelling has gone down and the scar looks like its going to look pretty good. The area around the incision is still pretty hard but that's to be expected as everything heals on the inside. The doctor said to massage the area to help break up the scar tissue that would be forming inside. It took just about a full month before he was able to put his own shoes on again. It is amazing the little things you take for granted of being able to do that become so hard after surgery. Here's a pic I took today...the dark areas of skin around the incision are leftover from radiation discoloring the skin. The whole area looked like that before but it has slowly been coming off on its own. The area is still hairless and we've been told that it will most likely stay that way.
Jimmy's hair is back...thin but back. He got his first haircut last week and was really excited about it. It was some sense of normalcy that was coming back. His hair is so fine and baby like now. It was very wispy on the ends before his haircut but looks much better now. It also came back a little lighter than it was before treatment. As it grows and he gets more haircuts, it should come back thicker and closer to the texture that it was before as well. Jimmy is also looking forward to getting back to work on a regular basis and doing the things he likes to do...like working out again.
This has been a really long year and I want to thank everyone again for their support through all of this. Thanks again to the people in 42 different countries that have let our family come into their lives. I do hope my blog has helped someone who may be going through all of this right now and to let them know that they are not alone. I will continue to keep everyone posted on how Jimmy is doing.
Monday, September 9, 2013
Surgery is over and tumor is gone!!!
September 6, 2013 - D-Day
Before the crack of dawn...4:30 a.m...we headed to the hospital for Jimmy's surgery. We were excited and apprehensive at the same time for the surgery to begin. His surgery was supposed to start at 7:30 but didn't start until 8:30...no surprise there. I was at the hospital with Jimmy's parents and we somehow managed to bide our time while surgery was going on. We had breakfast and lunch while waiting. A nurse did come out and give us an update twice to let us know that things were progressing well. The surgery took about 3 hours and we waited for another 2 hours while he was in recovery before we could see him. It was a LONG wait.
Once he got to his room and settled we finally got to see him. He was completely unrecognizable. His face was so swollen from being face down for hours that he really did not look like himself at all. I took a picture and showed him and he couldn't believe it either. (He didn't want me to post it.) At the beginning of the surgery, while they were putting in his breathing tube, he bit the inside of his lip really hard leaving a gash and lots of swelling there too. The doctor came in a little later and told us the that the surgery went well. She said the tumor had been sent to pathology and the results for margins would be available in about a week. She was concerned about the tumor being attached to the sciatic nerve and said she did have to snip a couple of branches of the nerve to get the tumor completely off of it. He did have feeling in his foot right after surgery, which is really good. She also told us that she could not get any margins in that area and that if there was a possibility that the tumor returned, it would most likely be in that area. We are choosing to not think about that right now.
Jimmy stayed in the hospital for 2 1/2 days with a drain in his leg and compression stockings on. He was in a lot of pain the first night and it took a little while to get it under control. He was able to get up and out of bed the second day to walk down the hall with a walker. He didn't go very far but having him be able to walk was a very good sign that the sciatic nerve was going to be okay. The drain was able to come out the day he left the hospital and that was a relief. If he had had to keep it in, it would have been in until he went to a follow up visit in a about a week. He said it hurt pretty bad when they took it out, since it had been placed about 3 inches inside his leg. He will have to continue to wear the compression stockings to help inhibit blood clots for a few weeks though.
September 9, 2013
Today is the first morning Jimmy is home. He sleep all night long and is very happy about that. Unlike being in the hospital when they wake you up all night to take vitals and such. He took a shower (which he couldn't do in the hospital, so we had to go the sponge bath route), which meant that I had cover it in plastic for the shower and then change the dressing after he got out. I was a little nervous since the wound is still so fresh. I don't know how many stitches there are for sure but here's a picture of his incision. It measures just over 9 inches and there is a small hole at the bottom where the drainage tube was as well. The discoloration of his leg is from the radiation and will stay that way. He will not have any hair growth in this area either.
He is in a lot of pain but thankfully, the tumor is out. Now we just wait for the pathology results to make sure they won't have to do surgery again to get more margins or have him do more radiation. We are so grateful that the surgery went well and that, hopefully, this is the last phase to Jimmy being whole and healthy again.
Thank you again for all of your prayers and support. We have definitely felt the power of prayer and the well wishes we have been receiving for Jimmy's speedy recovery.
Before the crack of dawn...4:30 a.m...we headed to the hospital for Jimmy's surgery. We were excited and apprehensive at the same time for the surgery to begin. His surgery was supposed to start at 7:30 but didn't start until 8:30...no surprise there. I was at the hospital with Jimmy's parents and we somehow managed to bide our time while surgery was going on. We had breakfast and lunch while waiting. A nurse did come out and give us an update twice to let us know that things were progressing well. The surgery took about 3 hours and we waited for another 2 hours while he was in recovery before we could see him. It was a LONG wait.
Once he got to his room and settled we finally got to see him. He was completely unrecognizable. His face was so swollen from being face down for hours that he really did not look like himself at all. I took a picture and showed him and he couldn't believe it either. (He didn't want me to post it.) At the beginning of the surgery, while they were putting in his breathing tube, he bit the inside of his lip really hard leaving a gash and lots of swelling there too. The doctor came in a little later and told us the that the surgery went well. She said the tumor had been sent to pathology and the results for margins would be available in about a week. She was concerned about the tumor being attached to the sciatic nerve and said she did have to snip a couple of branches of the nerve to get the tumor completely off of it. He did have feeling in his foot right after surgery, which is really good. She also told us that she could not get any margins in that area and that if there was a possibility that the tumor returned, it would most likely be in that area. We are choosing to not think about that right now.
Jimmy stayed in the hospital for 2 1/2 days with a drain in his leg and compression stockings on. He was in a lot of pain the first night and it took a little while to get it under control. He was able to get up and out of bed the second day to walk down the hall with a walker. He didn't go very far but having him be able to walk was a very good sign that the sciatic nerve was going to be okay. The drain was able to come out the day he left the hospital and that was a relief. If he had had to keep it in, it would have been in until he went to a follow up visit in a about a week. He said it hurt pretty bad when they took it out, since it had been placed about 3 inches inside his leg. He will have to continue to wear the compression stockings to help inhibit blood clots for a few weeks though.
September 9, 2013
Today is the first morning Jimmy is home. He sleep all night long and is very happy about that. Unlike being in the hospital when they wake you up all night to take vitals and such. He took a shower (which he couldn't do in the hospital, so we had to go the sponge bath route), which meant that I had cover it in plastic for the shower and then change the dressing after he got out. I was a little nervous since the wound is still so fresh. I don't know how many stitches there are for sure but here's a picture of his incision. It measures just over 9 inches and there is a small hole at the bottom where the drainage tube was as well. The discoloration of his leg is from the radiation and will stay that way. He will not have any hair growth in this area either.
He is in a lot of pain but thankfully, the tumor is out. Now we just wait for the pathology results to make sure they won't have to do surgery again to get more margins or have him do more radiation. We are so grateful that the surgery went well and that, hopefully, this is the last phase to Jimmy being whole and healthy again.
Thank you again for all of your prayers and support. We have definitely felt the power of prayer and the well wishes we have been receiving for Jimmy's speedy recovery.
Thursday, August 29, 2013
GOOD NEWS...
August 29, 2013
This post will be short and sweet...
Jimmy's cancer HAS NOT SPREAD!!! Woo hoo!!! The CT scan today showed no signs of cancer in his lungs. We are so relieved...this has been weighing on us since Jimmy's last week of chemo back in May when they saw nodules in his lungs. The MRI also gave the appearance that the tumor may have gotten smaller but we won't know for sure until the final report comes out.
So, as planned, Jimmy is good to go for surgery next week. He is ecstatic about the news and anxious to have the tumor removed. The only potential problem with surgery is that the tumor is attached to his sciatic nerve and the doctor will have to peel away the tumor from the nerve. The doctor assured us that she has done this hundreds of times and she is confident there will not be any complications. The margins will be small by doing this but at least the tumor will be gone.
Thank you all for your prayers and support. I know the prayers are working and we appreciate them so much!
This post will be short and sweet...
Jimmy's cancer HAS NOT SPREAD!!! Woo hoo!!! The CT scan today showed no signs of cancer in his lungs. We are so relieved...this has been weighing on us since Jimmy's last week of chemo back in May when they saw nodules in his lungs. The MRI also gave the appearance that the tumor may have gotten smaller but we won't know for sure until the final report comes out.
So, as planned, Jimmy is good to go for surgery next week. He is ecstatic about the news and anxious to have the tumor removed. The only potential problem with surgery is that the tumor is attached to his sciatic nerve and the doctor will have to peel away the tumor from the nerve. The doctor assured us that she has done this hundreds of times and she is confident there will not be any complications. The margins will be small by doing this but at least the tumor will be gone.
Thank you all for your prayers and support. I know the prayers are working and we appreciate them so much!
Wednesday, August 28, 2013
Radiation is over...re-scans tomorrow...surgery next week
August 28, 2013
I have written in about a month and I apologize for that but I guess its a good thing, since no news is good news, right?
Jimmy has completely finished his radiation and has gotten through it without too many problems. The worst part was the leg pain and the tiredness it caused. He was very lucky that he did not get badly burned from the radiation. He does have a large red mark on the back of his left thigh, which is where the tumor is and where the radiation went through his leg. The area is oval shaped about 12" x 6". Hair is still not coming back in that area yet but eventually it will. He does have some nice eyelashes and eyebrows again though!
Once radiation was over, we were lucky enough to take a vacation, courtesy of For Pete's Sake, a cancer foundation that sends families with adult patients on a "take a break from cancer" trip. They are such a wonderful organization. They sent us to Florida for a week, put us up in a nice 4 bedroom house with a pool and gave us theme park tickets to Sea World, Disney World and Universal Studios. It was truly a wonderful getaway for us to leave all of the stresses at home and just go and have a good time...and we did. We walked A LOT and got tired but it was so worth it. We spent time together as a family having fun and enjoying life. We got home re-energized for the next step in the process...Jimmy's surgery. THANK YOU FOR PETE'S SAKE!!!
Tomorrow is the beginning of the process. Jimmy gets re-scanned so we will finally know how well the treatments worked on the tumor and whether or not anything changed with regard to the nodules in his lungs. I have literally put all of this in the back of my mind for months so I wouldn't have to dwell on it. Tomorrow we will know for sure. I am thinking positive...the tumor will have gotten smaller and the nodules didn't get any bigger. From my lips to God's ears because I just can't wrap my brain around any other outcome. So I am asking that you please pray for our family, especially Jimmy, that all will go well tomorrow and that we will get some good news.
Thank you again for letting me be a part of your lives...all 37 countries of you.
Wednesday, July 24, 2013
Radiation is half over...is that a light at the end of the tunnel?
Jimmy is feeling good through radiation. He has had 13 of his 25 treatments. Amazingly, the process takes longer to set up than to actually get the treatment. They take x-rays, put his leg in place by lining up his tattoos to make sure they have the right spot and ZAP! That felt like a Batman phrase...LOL! I know that I have been very serious and often sad about how are lives have been heading this year but for the first time in a while, I am hopeful. Hopeful that the treatment is working and that I will have my husband back and Logan will have his Dad back.
Jimmy does have some soreness in his leg where he gets the radiation but nothing like the pain he used to have before chemo. And, the radiation definitely doesn't make him feel like chemo did. As everyone said it would be, this is so much easier on his body. He has his coloring back, he doesn't look so tired and his hair is starting to come back darker in some spots. The hair on his head has a dark tint to it but it feels so soft...like baby's hair. It is still very short but it is there. The one thing Jimmy really missed was his eyebrows and they too are coming back.
I think the reason I feel hopeful is because the radiation isn't taking such a toll on Jimmy and the fact that his hair is starting to return. It just seems more normal or at least the old normal. I want Jimmy to be whole and healthy. He will most likely have scans in the next few weeks to see how the radiation is doing and whether or not the nodules in his lungs are doing anything. I pray they are still the same, which means they are nothing, and that his tumor has gotten smaller.
Once radiation is finished, there will be about a three week break before surgery. He has spoken with the surgeon and she is confident that it should a routine surgery. Nonetheless, Jimmy is still a little nervous since he has never had surgery at all but that is to be expected. We'll cross that bridge later.
I once again ask for your prayers that Jimmy will continue to be healed by the treatment. Thank you again for letting me share our journey with you...all 31 countries of you.
Jimmy does have some soreness in his leg where he gets the radiation but nothing like the pain he used to have before chemo. And, the radiation definitely doesn't make him feel like chemo did. As everyone said it would be, this is so much easier on his body. He has his coloring back, he doesn't look so tired and his hair is starting to come back darker in some spots. The hair on his head has a dark tint to it but it feels so soft...like baby's hair. It is still very short but it is there. The one thing Jimmy really missed was his eyebrows and they too are coming back.
I think the reason I feel hopeful is because the radiation isn't taking such a toll on Jimmy and the fact that his hair is starting to return. It just seems more normal or at least the old normal. I want Jimmy to be whole and healthy. He will most likely have scans in the next few weeks to see how the radiation is doing and whether or not the nodules in his lungs are doing anything. I pray they are still the same, which means they are nothing, and that his tumor has gotten smaller.
Once radiation is finished, there will be about a three week break before surgery. He has spoken with the surgeon and she is confident that it should a routine surgery. Nonetheless, Jimmy is still a little nervous since he has never had surgery at all but that is to be expected. We'll cross that bridge later.
I once again ask for your prayers that Jimmy will continue to be healed by the treatment. Thank you again for letting me share our journey with you...all 31 countries of you.
Wednesday, July 10, 2013
Radiation Begins and Hair Starts to Come Back...
July 10, 2013
It has been a few weeks since I wrote anything but here's an update. I just needed the break and now that summer has arrived, I've been busy with our son.
Let me start by saying that the fundraiser was a success. We did not have as many people as I had hoped but it was a very nice night and it was really good for Jimmy to get out and socialize. He truly enjoyed seeing family and friends that he had not seen in a while.
Radiation has now begun. It started on Monday, July 8th. Jimmy went in for some final adjustments for the pinpointing of the radiation and a trial run but they ended up doing his first treatment that day. After his 3rd treatment today, he said that his leg is already sore from the radiation. The doctor said that he should expect some soreness and some tiredness as well. He said he is already feeling a little tired. His blood pressure was also very high today...not so good...he said he feels really stressed. He will have 5 straight weeks of radiation for a total of 25 treatments.
We have some good news! Jimmy's hair is starting to return a little bit. He has some peach fuzz on his head and face but he has a little patch of white hair just under his bottom lip. It is weird to see white hair on Jimmy, since he normally has dark hair. It is really soft, like baby hair. He also has a little mustache of clear hair...seriously, it has no pigment whatsoever...its clear. (See the pics below...I even included one of Jimmy and Logan on the 4th of July with one of our fireworks.) It will take some time for the pigment to come back but at least his hair is growing again. Jimmy is so excited about the hair growth that he says that he isn't going to shave and will just let it grow...God help us all...my husband has decided to become a Sasquatch! LOL! Seriously, he just wants to have his eyebrows and eyelashes back. It is a little strange looking but I've gotten used to seeing it. Jimmy also said that he can feel hair growing back in his nose too. Without hair there, his nasal passages get irritated very easily. Finally, something positive.
On another positive note, Jimmy has been feeling really good. Now that chemo is 5 weeks out, he has started to feel more like his old self. He has even been working a little in the last couple of weeks. He still gets tired easily and can't do as much but I am so relieved that he is able to act a little like his old self. It is good for him to be able to do things and feel more "normal". He's even gone bowling, been swimming and has been on a short bike ride a couple of times. Regaining his strength is important, especially before surgery. It will make it so much easier to recuperate.
We are staying positive and continue to pray and hope for the best. Thank you to everyone who has kept our family in their prayers!
Also, we are now at 27 countries that have read my blog...this boggles my mind that people are reading my blog. I do hope it helps someone know that they are not alone in this journey.
It has been a few weeks since I wrote anything but here's an update. I just needed the break and now that summer has arrived, I've been busy with our son.
Let me start by saying that the fundraiser was a success. We did not have as many people as I had hoped but it was a very nice night and it was really good for Jimmy to get out and socialize. He truly enjoyed seeing family and friends that he had not seen in a while.
Radiation has now begun. It started on Monday, July 8th. Jimmy went in for some final adjustments for the pinpointing of the radiation and a trial run but they ended up doing his first treatment that day. After his 3rd treatment today, he said that his leg is already sore from the radiation. The doctor said that he should expect some soreness and some tiredness as well. He said he is already feeling a little tired. His blood pressure was also very high today...not so good...he said he feels really stressed. He will have 5 straight weeks of radiation for a total of 25 treatments.
We have some good news! Jimmy's hair is starting to return a little bit. He has some peach fuzz on his head and face but he has a little patch of white hair just under his bottom lip. It is weird to see white hair on Jimmy, since he normally has dark hair. It is really soft, like baby hair. He also has a little mustache of clear hair...seriously, it has no pigment whatsoever...its clear. (See the pics below...I even included one of Jimmy and Logan on the 4th of July with one of our fireworks.) It will take some time for the pigment to come back but at least his hair is growing again. Jimmy is so excited about the hair growth that he says that he isn't going to shave and will just let it grow...God help us all...my husband has decided to become a Sasquatch! LOL! Seriously, he just wants to have his eyebrows and eyelashes back. It is a little strange looking but I've gotten used to seeing it. Jimmy also said that he can feel hair growing back in his nose too. Without hair there, his nasal passages get irritated very easily. Finally, something positive.
On another positive note, Jimmy has been feeling really good. Now that chemo is 5 weeks out, he has started to feel more like his old self. He has even been working a little in the last couple of weeks. He still gets tired easily and can't do as much but I am so relieved that he is able to act a little like his old self. It is good for him to be able to do things and feel more "normal". He's even gone bowling, been swimming and has been on a short bike ride a couple of times. Regaining his strength is important, especially before surgery. It will make it so much easier to recuperate.
We are staying positive and continue to pray and hope for the best. Thank you to everyone who has kept our family in their prayers!
Also, we are now at 27 countries that have read my blog...this boggles my mind that people are reading my blog. I do hope it helps someone know that they are not alone in this journey.
 |
| Nice little patch of white hair |
.jpg) |
| There is a little hair on his upper lip too |
Tuesday, June 18, 2013
Kulicks Kicking Cancer Benefit June 21, 2013
As a lot of my blog readers already know, there is a fundraiser this Friday, June 21, 2013 in Doylestown, Pennsylvania to help our family with the astronomical medical costs we are facing due to Jimmy's treatment. The fundraiser should be a night of fun and a chance for us to get out and have a good time with friends and family. Something we have not done in a while. Our local community has been so generous with their donations for the silent auction. I am still amazed at the kindness of strangers and it truly restores my faith of the good in people.
Our life has become so different than before cancer came into our lives and it is true...you don't have any idea of what's its like until you have had to deal with it yourself. It is hard. Very hard. We are struggling emotionally and financially in a way we never dreamed we would have to do.
I hate this for Jimmy. I hate this for Logan. I hate that our lives have revolved around this evil disease for 6 months now.
For those of you who have contacted me directly via our email at [email protected] to offer support and encouragement , I thank you. We are truly grateful.
For those who have asked me to provide a way to contribute to our family, you can do so online at Paypal to email [email protected]. If you send it as a gift, we do not have to pay a fee. You do not need a Paypal account to do this.
Please continue to pray for our family as we continue down this difficult road.
Thank you again for allowing us to come into your life and share our story with you.
Our life has become so different than before cancer came into our lives and it is true...you don't have any idea of what's its like until you have had to deal with it yourself. It is hard. Very hard. We are struggling emotionally and financially in a way we never dreamed we would have to do.
I hate this for Jimmy. I hate this for Logan. I hate that our lives have revolved around this evil disease for 6 months now.
For those of you who have contacted me directly via our email at [email protected] to offer support and encouragement , I thank you. We are truly grateful.
For those who have asked me to provide a way to contribute to our family, you can do so online at Paypal to email [email protected]. If you send it as a gift, we do not have to pay a fee. You do not need a Paypal account to do this.
Please continue to pray for our family as we continue down this difficult road.
Thank you again for allowing us to come into your life and share our story with you.
Sunday, June 16, 2013
Happy Father's Day!!!
June 16, 2013
Today is Father's Day and Jimmy had a good day. We spent the day with his family and the day was very normal. He did, however, fall asleep right after dinner on the couch in a room full of people...LOL. I am glad though that it was a nice, quiet day spent with family.
Jimmy is a really great Dad. He spends time with Logan and teaches him things that I can't. They've played ball, they've fished, they've sparred and they've had a lot of fun together. Logan and Jimmy have a wonderful bond and Logan really looks up to Jimmy. I love that and I feel so lucky, since I could not have wished for a better husband or father for my son.
Here's a picture of Jimmy with Logan today. And, yes, I made them wear matching outfits...you know, just like when Logan was little. They protested but secretly I think they liked it. : )
Happy Father's Day to all of the dads out there in the world. Thanks for letting me share my family with you.
Today is Father's Day and Jimmy had a good day. We spent the day with his family and the day was very normal. He did, however, fall asleep right after dinner on the couch in a room full of people...LOL. I am glad though that it was a nice, quiet day spent with family.
Jimmy is a really great Dad. He spends time with Logan and teaches him things that I can't. They've played ball, they've fished, they've sparred and they've had a lot of fun together. Logan and Jimmy have a wonderful bond and Logan really looks up to Jimmy. I love that and I feel so lucky, since I could not have wished for a better husband or father for my son.
Here's a picture of Jimmy with Logan today. And, yes, I made them wear matching outfits...you know, just like when Logan was little. They protested but secretly I think they liked it. : )
Happy Father's Day to all of the dads out there in the world. Thanks for letting me share my family with you.
Thursday, June 13, 2013
Now That Chemo is Over...Onward to the Next Step...Let's Not Forget the Fundraiser Next Week
June 13, 2013 - It is now almost two weeks after Jimmy's last chemo treatment.
This last round of chemo really seemed to take its toll on Jimmy in a way that the other rounds have not. Aside from the complications during the week, after it was over, Jimmy was extremely sore all over. He said that it felt like every bone in his body was breaking. This went on for several days.
The mouth sores came on with a vengeance and his taste buds were completely gone for almost a week. The sores were so bad that it made his tongue jagged on the sides. Not to mention that he developed thrush in his mouth as well. He was truly a mess after this round. As usual, the blood counts were at zero and that didn't help with the healing of the mouth sores or the thrush. He had to gargle with a pain killing mouthwash.
As usual, his airways are hypersensitive, especially now that pollen counts are high. He is also always tired. His endurance level is non-existent and the smallest bit of exertion tires him out.
Now that it is getting warmer and the sun is out more, a side effect has become more prominent. Jimmy is finding out how much the doxyrubicin changes the pigmentation of his skin. He always has a great olive complexion and the chemo seemed to make his skin have a yellow tint. Well, now that he is out in the sun more, he has noticed some brown spots on his skin as well as some freckles on his face.
My poor husband. This is a man who was a bodybuilder, had a great head of hair and always had a great tan. Well, apparently, the chemo won this round. Jimmy is almost 40 lbs. lighter, has no hair and now has a weird skin color. If it wasn't so awful it would be funny.
The good thing is that chemo is over. We have put the lung nodules on the back burner for now since there is nothing we can do but wait until Jimmy gets more scans in a couple of months. And, now, two weeks after chemo, is when Jimmy is starting to feel better and I am certain he is going to get stronger and more active soon.
He starts radiation the first went of July, so he still has a couple of weeks to regain some strength before that starts. He goes next week to get fitted for an apparatus for his leg that will allow the radiologist to administer the radiation in exactly the same spot every time. He will also get 3 little tattoo dots on his leg that will show the radiologist where to aim the radiation.
As for Logan, he is still dealing with the fact that his Dad has cancer. He gets emotional easily and still has a tough time dealing with those emotions. Every day is a work in progress and I pray that Logan will get through this as unscathed as possible.
As for me, I'm knee deep in getting ready for the fundraiser. It is next Friday, June 21, 2013. It has been a lot of work but I have had the help, especially one friend in particular...you know who you are. Again, through all of this, we have really found out who our friends are. Those I thought who would reach out to help have not. Those I never dreamed that would help have. Oh well, this is not about that. The fundraiser is to try and help put a dent in our exorbitant medical bills. To date, insurance has still not paid anything and that is very scary considering the fact that the bills are now in the hundreds of thousands of dollars. I know eventually it will all work out somehow. I know that God has a plan for us.
I am excited about the fundraiser though. My faith in the kindness of others, especially strangers, has been completed revitalized. There have been so many generous people and businesses that have donated so much. As of today, we have more than 50 silent auction items, including overnight stays, diamond jewelry, restaurant gift cards, wine baskets, date night baskets, birthday parties and so much more. There will be DJ entertainment and some great food too. Hopefully, it will be a fun night. Most of all, I hope that some of Jimmy's old friends come to see him. I think a night out with old friends might be just the trick to make him feel better.
For those of you from other countries reading the blog, thank you. My blog has now been seen by people in 20 different countries around the world. I would love to hear from you. Please comment if you can (some people have not been able to) or comment on the Facebook page, Kulicks Kicking Cancer. I do hope that somehow my blog is helping someone else out there dealing with the same thing and realizes they are not alone in this.
Thanks again for the kind words, thoughts and prayers we have been receiving. It truly means a lot.
This last round of chemo really seemed to take its toll on Jimmy in a way that the other rounds have not. Aside from the complications during the week, after it was over, Jimmy was extremely sore all over. He said that it felt like every bone in his body was breaking. This went on for several days.
The mouth sores came on with a vengeance and his taste buds were completely gone for almost a week. The sores were so bad that it made his tongue jagged on the sides. Not to mention that he developed thrush in his mouth as well. He was truly a mess after this round. As usual, the blood counts were at zero and that didn't help with the healing of the mouth sores or the thrush. He had to gargle with a pain killing mouthwash.
As usual, his airways are hypersensitive, especially now that pollen counts are high. He is also always tired. His endurance level is non-existent and the smallest bit of exertion tires him out.
Now that it is getting warmer and the sun is out more, a side effect has become more prominent. Jimmy is finding out how much the doxyrubicin changes the pigmentation of his skin. He always has a great olive complexion and the chemo seemed to make his skin have a yellow tint. Well, now that he is out in the sun more, he has noticed some brown spots on his skin as well as some freckles on his face.
My poor husband. This is a man who was a bodybuilder, had a great head of hair and always had a great tan. Well, apparently, the chemo won this round. Jimmy is almost 40 lbs. lighter, has no hair and now has a weird skin color. If it wasn't so awful it would be funny.
The good thing is that chemo is over. We have put the lung nodules on the back burner for now since there is nothing we can do but wait until Jimmy gets more scans in a couple of months. And, now, two weeks after chemo, is when Jimmy is starting to feel better and I am certain he is going to get stronger and more active soon.
He starts radiation the first went of July, so he still has a couple of weeks to regain some strength before that starts. He goes next week to get fitted for an apparatus for his leg that will allow the radiologist to administer the radiation in exactly the same spot every time. He will also get 3 little tattoo dots on his leg that will show the radiologist where to aim the radiation.
As for Logan, he is still dealing with the fact that his Dad has cancer. He gets emotional easily and still has a tough time dealing with those emotions. Every day is a work in progress and I pray that Logan will get through this as unscathed as possible.
As for me, I'm knee deep in getting ready for the fundraiser. It is next Friday, June 21, 2013. It has been a lot of work but I have had the help, especially one friend in particular...you know who you are. Again, through all of this, we have really found out who our friends are. Those I thought who would reach out to help have not. Those I never dreamed that would help have. Oh well, this is not about that. The fundraiser is to try and help put a dent in our exorbitant medical bills. To date, insurance has still not paid anything and that is very scary considering the fact that the bills are now in the hundreds of thousands of dollars. I know eventually it will all work out somehow. I know that God has a plan for us.
I am excited about the fundraiser though. My faith in the kindness of others, especially strangers, has been completed revitalized. There have been so many generous people and businesses that have donated so much. As of today, we have more than 50 silent auction items, including overnight stays, diamond jewelry, restaurant gift cards, wine baskets, date night baskets, birthday parties and so much more. There will be DJ entertainment and some great food too. Hopefully, it will be a fun night. Most of all, I hope that some of Jimmy's old friends come to see him. I think a night out with old friends might be just the trick to make him feel better.
For those of you from other countries reading the blog, thank you. My blog has now been seen by people in 20 different countries around the world. I would love to hear from you. Please comment if you can (some people have not been able to) or comment on the Facebook page, Kulicks Kicking Cancer. I do hope that somehow my blog is helping someone else out there dealing with the same thing and realizes they are not alone in this.
Thanks again for the kind words, thoughts and prayers we have been receiving. It truly means a lot.
Friday, May 31, 2013
A Rough Last Week of Chemo...
May 28, 2013 - Of course, the first day of the last chemo treatment has to be a tough one. Waited 2 hours to get into a hospital room that was dirty...blood and urine stains on the floor and counter...yuck! Since it took so long getting in the room, we were told that Jimmy could not get his PICC line for chemo since it was so late in the day...2:30 p.m. The head nurse finally rectified the situation and got him in otherwise, he would have spent the night in the hospital for no reason. Thank you Lisa! Then, when I went to leave the hospital, I waiting 25 minutes for my car in valet (no one knew where it was) and I finally found out where it was and walked 3 blocks in the rain to get it...45 minutes later I was finally on my way home. Get home and try to reach my son...he got picked up by a friend...over an hour later, still can't reach him. Ugh. Is this day over yet?
To add to the day, Jimmy told me that they botched his PICC insertion again. I know this is a teaching hospital but both times they have let someone new do the procedure, it is so much more painful for Jimmy. His arm is black and blue and is very sore. Like he's not already going through enough...ugh.
May 29, 2013 - Today is a better day. Jimmy is feeling okay and we even took a walk outside around the hospital. The grounds and gardens of our nation's first hospital are so beautiful. There is so much history here.
They took some scans of his lungs today. Results tomorrow. Fingers crossed that they are clear. They will start chemo soon...only 3 more treatments left.
May 30, 2013 - This day began like any other day until the doctor came. He told Jimmy that he reviewed the scans from his last CT about 2 months ago and the one they did yesterday. He said there were some granulomas, which are inflammatory cells that form a lesion, in his lungs...no big deal here. Then he said he saw 3 nodules. They found nodules. OMG! This is where the sarcoma spreads...please God, let Jimmy be okay. One nodule appeared to have already been there, since it was seen on both scans. The other two were questionable. This is not necessarily bad news yet but it certainly isn't good news. He said they were small, and there was nothing that could be done right now. We would have to wait 3 months to have another scan and then see what they looked like. This sucks! Just when we thought this was the last chemo treatment and Jimmy went into this week with a positive attitude, now this. The waiting and not knowing is the hardest part. At least if we knew what we were dealing with, then we could deal with it. I hate that I had to leave Jimmy today in the hospital. I hate it that he is by himself, especially after having a bad day.
Have I mentioned lately that I HATE CANCER!
On the bright side, after today, there is only 1 more chemo treatment left. Hallelujah! It has been a long 4 months.
May 31, 2013 - A new day...a better outlook. The oncology nurse came in and talked to Jimmy this morning. She reassured him about the nodules and told him not to worry. We would just wait and see in 3 months. That's all we can do...no dwelling on the negative...there is too much at stake. We are keeping with the game plan...radiation will start as scheduled in a few weeks and then we will plan on surgery in September.
Jimmy is tired and ready to come home. This is the first time I did not visit him in the hospital in the six weeks he has been in. Our son had a field trip at school and I was a chaperon, so I stayed with Logan instead. It was a fun time and I'm glad I went but I felt guilty nonetheless.
Finally, NO MORE CHEMO!!!
It has been a tough week but thankfully, chemo is over. Praise God that Jimmy got through it. I will pick him up tomorrow from the hospital and then Jimmy, Logan and I will have a few weeks off to enjoy the beginning of summer before radiation treatments start.
Thank you again for all of the prayers and kind words we have been getting from people all over the world.
To add to the day, Jimmy told me that they botched his PICC insertion again. I know this is a teaching hospital but both times they have let someone new do the procedure, it is so much more painful for Jimmy. His arm is black and blue and is very sore. Like he's not already going through enough...ugh.
May 29, 2013 - Today is a better day. Jimmy is feeling okay and we even took a walk outside around the hospital. The grounds and gardens of our nation's first hospital are so beautiful. There is so much history here.
They took some scans of his lungs today. Results tomorrow. Fingers crossed that they are clear. They will start chemo soon...only 3 more treatments left.
May 30, 2013 - This day began like any other day until the doctor came. He told Jimmy that he reviewed the scans from his last CT about 2 months ago and the one they did yesterday. He said there were some granulomas, which are inflammatory cells that form a lesion, in his lungs...no big deal here. Then he said he saw 3 nodules. They found nodules. OMG! This is where the sarcoma spreads...please God, let Jimmy be okay. One nodule appeared to have already been there, since it was seen on both scans. The other two were questionable. This is not necessarily bad news yet but it certainly isn't good news. He said they were small, and there was nothing that could be done right now. We would have to wait 3 months to have another scan and then see what they looked like. This sucks! Just when we thought this was the last chemo treatment and Jimmy went into this week with a positive attitude, now this. The waiting and not knowing is the hardest part. At least if we knew what we were dealing with, then we could deal with it. I hate that I had to leave Jimmy today in the hospital. I hate it that he is by himself, especially after having a bad day.
Have I mentioned lately that I HATE CANCER!
On the bright side, after today, there is only 1 more chemo treatment left. Hallelujah! It has been a long 4 months.
May 31, 2013 - A new day...a better outlook. The oncology nurse came in and talked to Jimmy this morning. She reassured him about the nodules and told him not to worry. We would just wait and see in 3 months. That's all we can do...no dwelling on the negative...there is too much at stake. We are keeping with the game plan...radiation will start as scheduled in a few weeks and then we will plan on surgery in September.
Jimmy is tired and ready to come home. This is the first time I did not visit him in the hospital in the six weeks he has been in. Our son had a field trip at school and I was a chaperon, so I stayed with Logan instead. It was a fun time and I'm glad I went but I felt guilty nonetheless.
Finally, NO MORE CHEMO!!!
It has been a tough week but thankfully, chemo is over. Praise God that Jimmy got through it. I will pick him up tomorrow from the hospital and then Jimmy, Logan and I will have a few weeks off to enjoy the beginning of summer before radiation treatments start.
Thank you again for all of the prayers and kind words we have been getting from people all over the world.
Sunday, May 26, 2013
Chemo is almost over...
May 26, 2013
Jimmy has had a rough couple of weeks. He has been very tired and weak, has had mouth and throat sores and is very anxious to have chemotherapy over.
The first week after chemo is always the hardest. As usual, his hemoglobin was zero, which means he was severely anemic. His white blood count was .2 (normal is about 12), which means he had no immune system. I'm always afraid that he is going to get sick and end up in the hospital. Thankfully, that hasn't happened. And, thank goodness for antibacterial lotion. Jimmy practically bathes in it these days.
I hate when he comes home and he tries to start doing things too soon. You know its bad when he walks the dog and comes in winded. Even today, two weeks after chemo, he got dizzy when he stood up too fast. He still has moments of chemo-brain where things don't make sense or he can't find the right words to say.
I HATE THIS.
Jimmy has one more round of chemo to go. I cannot wait until it is over for him. He hates the chemo and is not looking forward to it. I just tell him that its the last one and that he can do it...he has to do it. I see what it does to him and it is so hard to watch the deterioration of the Jimmy I know. He goes in feeling pretty good and leaves the hospital at the end of the week a very different person. The chemo strips away so much and each time it seems to take a little more of Jimmy. It has taken his hair, his strength and even changed the color of his skin. It has taken Jimmy away from Logan for about 2 weeks out of the month...the first week in the hospital and the second while he is home and recovering. It has made my husband and best friend a very different man than the one I knew before all of this.
After this round, there will be more scans to see what's going on with the tumor. Hopefully, the tumor is necrotic and has gotten a little smaller. We are not so much worried with the size of it at this point though. We just want the chemo to kill all of the cancer cells and let radiation shrink the tumor. The smaller it is, the better it will be for surgery.
This week has also been very stressful. Jimmy lost a friend this week...someone he had known his entire life and considered a second sister. RIP Alissa...may you be at peace. Alissa was helping with our fundraiser. She had started to spread the word and was going to help at the event. We had been speaking with her every day, several times a day and then it just stopped. A full day after our last communication we heard that she had passed away. We still don't know what happened and whether it was accidental or not. It is very sad, especially because she left behind a young daughter. Jimmy has been very effected by her death and I worry that the added stress is not good for him.
Logan is doing well and coping with Jimmy's illness much better these days. Since I usually take him to see Jimmy at least once while he is in the hospital, I think it makes him feel less stressed just getting to spend a little time with his Dad during his hospital week. As for me, I seem to be in a constant state of stress and depression. I pray for the day that Jimmy is healthy and we can put this behind us. I dread getting the mail with yet another bill from a doctor, hospital, radiologist, etc. I just want my husband back, whole and healthy.
Please pray for our family as we continue to battle Jimmy's cancer...this horrific disease that has taken over our lives. We really appreciate all of the support we have gotten from family, friends and even strangers. This has truly been a time where we have found out who our real friends are...and those we thought were friends are really not friends at all.
Thank you to those of you who have allowed us to come into your lives and share our blog with you. We have now been seen by people in 14 countries around the world. I hope this blog is helpful in some small way to those who read it. We would love to hear from some of our blog friends from around the world.
Tomorrow is Memorial Day. Thank you to those who have served our country and have paid the ultimate price, so we may continue to have our freedom. Jimmy's brother, John, was killed in Iraq in 2005. We love you John and miss you very much.
Jimmy has had a rough couple of weeks. He has been very tired and weak, has had mouth and throat sores and is very anxious to have chemotherapy over.
The first week after chemo is always the hardest. As usual, his hemoglobin was zero, which means he was severely anemic. His white blood count was .2 (normal is about 12), which means he had no immune system. I'm always afraid that he is going to get sick and end up in the hospital. Thankfully, that hasn't happened. And, thank goodness for antibacterial lotion. Jimmy practically bathes in it these days.
I hate when he comes home and he tries to start doing things too soon. You know its bad when he walks the dog and comes in winded. Even today, two weeks after chemo, he got dizzy when he stood up too fast. He still has moments of chemo-brain where things don't make sense or he can't find the right words to say.
I HATE THIS.
Jimmy has one more round of chemo to go. I cannot wait until it is over for him. He hates the chemo and is not looking forward to it. I just tell him that its the last one and that he can do it...he has to do it. I see what it does to him and it is so hard to watch the deterioration of the Jimmy I know. He goes in feeling pretty good and leaves the hospital at the end of the week a very different person. The chemo strips away so much and each time it seems to take a little more of Jimmy. It has taken his hair, his strength and even changed the color of his skin. It has taken Jimmy away from Logan for about 2 weeks out of the month...the first week in the hospital and the second while he is home and recovering. It has made my husband and best friend a very different man than the one I knew before all of this.
After this round, there will be more scans to see what's going on with the tumor. Hopefully, the tumor is necrotic and has gotten a little smaller. We are not so much worried with the size of it at this point though. We just want the chemo to kill all of the cancer cells and let radiation shrink the tumor. The smaller it is, the better it will be for surgery.
This week has also been very stressful. Jimmy lost a friend this week...someone he had known his entire life and considered a second sister. RIP Alissa...may you be at peace. Alissa was helping with our fundraiser. She had started to spread the word and was going to help at the event. We had been speaking with her every day, several times a day and then it just stopped. A full day after our last communication we heard that she had passed away. We still don't know what happened and whether it was accidental or not. It is very sad, especially because she left behind a young daughter. Jimmy has been very effected by her death and I worry that the added stress is not good for him.
Logan is doing well and coping with Jimmy's illness much better these days. Since I usually take him to see Jimmy at least once while he is in the hospital, I think it makes him feel less stressed just getting to spend a little time with his Dad during his hospital week. As for me, I seem to be in a constant state of stress and depression. I pray for the day that Jimmy is healthy and we can put this behind us. I dread getting the mail with yet another bill from a doctor, hospital, radiologist, etc. I just want my husband back, whole and healthy.
Please pray for our family as we continue to battle Jimmy's cancer...this horrific disease that has taken over our lives. We really appreciate all of the support we have gotten from family, friends and even strangers. This has truly been a time where we have found out who our real friends are...and those we thought were friends are really not friends at all.
Thank you to those of you who have allowed us to come into your lives and share our blog with you. We have now been seen by people in 14 countries around the world. I hope this blog is helpful in some small way to those who read it. We would love to hear from some of our blog friends from around the world.
Tomorrow is Memorial Day. Thank you to those who have served our country and have paid the ultimate price, so we may continue to have our freedom. Jimmy's brother, John, was killed in Iraq in 2005. We love you John and miss you very much.
Saturday, May 11, 2013
Round 5 over - May 11, 2013
May 7, 2013 - This seems to be a stressful week. I think knowing that this is the 5th round of chemo with only one more to go make all of us very anxious to have it end. First day of chemo went without incident.
Today, they did a lung x-ray and echocardiogram to check and see how things look. Hopefully, they don't see anything on his lungs to cause concern. We are also hoping that his heart is able to continue to withstand the chemo regimen. They have included a heart medication to the chemo process to help protect his heart since the chemo drugs are so harsh. It does add another hour to the process but it is worth it.
He is feeling a little "cloudy" today. He feels the effect of the chemo in his thinking and cognitive abilities. He does feel a little queasy as well. I really hate this whole process.
X-ray came back clear...still no sign of spreading...woo hoo!!! His heart has a little bit of a glitch but they are telling us it is nothing to worry about right now. The chemo is so hard on Jimmy's body and, even though they are giving him medicine to protect his heart and kidneys, I still worry what the lasting effects of the chemo will be for the long term.
May 10, 2013 - Jimmy comes home today. I have really missed him this week. Logan came with me last night for a visit and he was really excited to see his Dad. This is so hard on him and I forget that he doesn't see Jimmy all week because I am there every day. Logan is doing so well but I know how hard it is for him. Jimmy is feeling the effects of the chemo and is feeling very drained.
May 11, 2013 - Round 5 is finally over. Only one more chemo treatment left and it can't come soon enough. The psychiatrist from the hospital came for a visit today to talk to both Jimmy and I. It is a much needed support for both of us. Jimmy is always trying to be strong and say that he is "fine" when he is really not. Its a running joke with the doctor and his nurse. When we go in for a blood work visit, they ask him how he is doing...he says fine and then they look to me to ask how he is really doing. I love my husband so much and it is so hard to see him like this. I'm the one person he does not have to pretend with about how he is feeling. I can see the effects and I just want to make it better. This whole process is so life altering. I miss our life before cancer. We will get through this but sometimes that reality is hard to see.
May 12, 2013 - Today is a bad day. Jimmy is tired, sore and his brain is fuzzy today. This is when he is at his worst and it will last for the next few days. He says he feels like he has been run over by a truck. The best thing for me to do is just leave him alone and let him rest.
I hate this.
I HATE CANCER.
X-ray came back clear...still no sign of spreading...woo hoo!!! His heart has a little bit of a glitch but they are telling us it is nothing to worry about right now. The chemo is so hard on Jimmy's body and, even though they are giving him medicine to protect his heart and kidneys, I still worry what the lasting effects of the chemo will be for the long term.
May 10, 2013 - Jimmy comes home today. I have really missed him this week. Logan came with me last night for a visit and he was really excited to see his Dad. This is so hard on him and I forget that he doesn't see Jimmy all week because I am there every day. Logan is doing so well but I know how hard it is for him. Jimmy is feeling the effects of the chemo and is feeling very drained.
May 11, 2013 - Round 5 is finally over. Only one more chemo treatment left and it can't come soon enough. The psychiatrist from the hospital came for a visit today to talk to both Jimmy and I. It is a much needed support for both of us. Jimmy is always trying to be strong and say that he is "fine" when he is really not. Its a running joke with the doctor and his nurse. When we go in for a blood work visit, they ask him how he is doing...he says fine and then they look to me to ask how he is really doing. I love my husband so much and it is so hard to see him like this. I'm the one person he does not have to pretend with about how he is feeling. I can see the effects and I just want to make it better. This whole process is so life altering. I miss our life before cancer. We will get through this but sometimes that reality is hard to see.
May 12, 2013 - Today is a bad day. Jimmy is tired, sore and his brain is fuzzy today. This is when he is at his worst and it will last for the next few days. He says he feels like he has been run over by a truck. The best thing for me to do is just leave him alone and let him rest.
I hate this.
I HATE CANCER.
Monday, May 6, 2013
Round 5 Begins - May 6, 2013
Well, last week was better for Jimmy. He felt pretty good and got out some during the week. The week before chemo starts is generally a good one...just in time to do it all again...ugh. Blood work was good and he is currently getting his PICC line as I write this. Hopefully, all is going well.
Emotions have been running high this past week too. He really didn't want to come back to the hospital for chemo again. It takes its toll on him and on Logan and I. Jimmy still does not quite understand how terrible this is for Logan and I as well as him. He seems to think that since he is going through chemo that he is the only one affected. I hate what this is doing to him. He is not recovering as much after each treatment and he seems weaker until the 3rd week after chemo. His blood levels get lower each time too. This is very scary and makes me very sad that he has to go through this. It is hard to watch. Logan is dealing okay but was not looking forward to this week either. It really bothers him when Jimmy is in the hospital all week. He misses him so much. As for me, I am stressed even before the week begins. The good thing is that after this treatment he only has one more chemo treatment to go. Radiation will follow but am hopeful that he will get through that better than the chemo.
The fundraiser planning is moving right along. Donations for silent auction items are starting to come in but it is really hard to work on it without much help. My priorities are Jimmy and Logan but this needs to be done also. I know there are those who probably don't think a fundraiser is necessary. But, with no income and bank accounts dwindling quickly... not to mention the astronomical bills continuing to come in, it is completely overwhelming. It is truly life altering and it will take a long time to recover emotionally and financially from all of this.
On a better note, we talked to a woman this morning who had the same thing that Jimmy has and she is 2 years cancer free after the same treatment regimen that he is currently going through. It was really encouraging for both Jimmy and I. We have heard some terrible stories but this one was what we both needed to hear.
I am hopeful that this blog is helpful for those who may be going through the same thing along with us. I see that the blog has been read from people in 9 different countries. I would love to hear from those of you outside the United States. Please feel free to comment on the blog or contact me through Facebook. I thank you for following our story and I hope it helps just one person to make them realize that they are not alone in this terrible journey called cancer.
Emotions have been running high this past week too. He really didn't want to come back to the hospital for chemo again. It takes its toll on him and on Logan and I. Jimmy still does not quite understand how terrible this is for Logan and I as well as him. He seems to think that since he is going through chemo that he is the only one affected. I hate what this is doing to him. He is not recovering as much after each treatment and he seems weaker until the 3rd week after chemo. His blood levels get lower each time too. This is very scary and makes me very sad that he has to go through this. It is hard to watch. Logan is dealing okay but was not looking forward to this week either. It really bothers him when Jimmy is in the hospital all week. He misses him so much. As for me, I am stressed even before the week begins. The good thing is that after this treatment he only has one more chemo treatment to go. Radiation will follow but am hopeful that he will get through that better than the chemo.
The fundraiser planning is moving right along. Donations for silent auction items are starting to come in but it is really hard to work on it without much help. My priorities are Jimmy and Logan but this needs to be done also. I know there are those who probably don't think a fundraiser is necessary. But, with no income and bank accounts dwindling quickly... not to mention the astronomical bills continuing to come in, it is completely overwhelming. It is truly life altering and it will take a long time to recover emotionally and financially from all of this.
On a better note, we talked to a woman this morning who had the same thing that Jimmy has and she is 2 years cancer free after the same treatment regimen that he is currently going through. It was really encouraging for both Jimmy and I. We have heard some terrible stories but this one was what we both needed to hear.
I am hopeful that this blog is helpful for those who may be going through the same thing along with us. I see that the blog has been read from people in 9 different countries. I would love to hear from those of you outside the United States. Please feel free to comment on the blog or contact me through Facebook. I thank you for following our story and I hope it helps just one person to make them realize that they are not alone in this terrible journey called cancer.
Monday, April 29, 2013
Doing a Fundraiser for Kulicks Kicking Cancer
As you know if you've been following the blog, Jimmy and I are self-employed and we own a roofing business. Jimmy is the crux of the business and with him unable work during the treatment, we have decided to have a fundraiser on June 21st to help defray the astronomical medical costs associated with Jimmy's cancer treatment. I've never done anything like this before, so it should be interesting.
I have had a couple of people offer to help but what we really need now are volunteers, donations for food and items for the silent auction. If you, or someone you know, or even a business would like to help, please comment below to let me know. You can also find updated information about the fundraiser on the Kulicks Kicking Cancer Facebook page.
For those of you who are unable to make to the fundraiser, we have set up a couple of different ways to help aside from the fundraiser. If you can, please help support our family while we go through this crisis in our lives. Donations can be easily made at the following online link https://www.youcaring.com/medical-fundraiser/Kulicks-Kicking-Cancer/42802 or mailed to the TD Bank benefit fund, 450 York Road, Warminster, PA 18976.
We also ask for your continued prayers and support. We truly believe in the power of prayer.
Here's our new fundraiser logo...a family of three intertwined for support...we love it!
I have had a couple of people offer to help but what we really need now are volunteers, donations for food and items for the silent auction. If you, or someone you know, or even a business would like to help, please comment below to let me know. You can also find updated information about the fundraiser on the Kulicks Kicking Cancer Facebook page.
For those of you who are unable to make to the fundraiser, we have set up a couple of different ways to help aside from the fundraiser. If you can, please help support our family while we go through this crisis in our lives. Donations can be easily made at the following online link https://www.youcaring.com/medical-fundraiser/Kulicks-Kicking-Cancer/42802 or mailed to the TD Bank benefit fund, 450 York Road, Warminster, PA 18976.
We also ask for your continued prayers and support. We truly believe in the power of prayer.
Here's our new fundraiser logo...a family of three intertwined for support...we love it!
Saturday, April 27, 2013
April 27, 2013 - A Very Emotional Week
Since Jimmy got home from Round 4, he has been more tired than ever and more emotional as well. So have I. As usual, he is sick and very fatigued. His body is also very sore all over. He didn't really get out of bed until Monday, April 22. He took the dog out and came back exhausted. It is so hard to see him that way. I hate that he is weak and feeling so crappy. Wednesday he planned to get out of the house and felt like he was going to pass out just getting ready to do so. He did go out but it was not an easy day for him. The treatments are getting worse and the recovery time is getting longer after each treatment.
On Monday, Tuesday and Wednesday, we were completely on each other's nerves. Then, the blame game began. Jimmy wondered why this was happening to him and hating the way the treatment was making him feel all of the time. He said I wasn't supportive of him and that I thought this was about me. He said he didn't understand why I was depressed since he was going through the chemo, not me. I hated the fact that our life has changed so drastically and I am wishing for things that once was. To see friends go out to dinner and families go on outings is painful for me to see. I am feeling guilty for going out and doing things for myself even though I need to do that. I have started seeing a therapist to help me sort out how I feel and to be able to say things out loud that I can't say to Jimmy. We all are depressed that vacation was cancelled and the one thing we really look forward to each year won't happen this year. We both are worried about the business as income is basically nonexistent and bills keep coming in. We are both worried about Logan and how he is handling all of this. We sat down with Jimmy's parents just to get an outside opinion about life as we know it now. It was helpful to just talk it out with someone other than the two of us.
We went to a follow-up visit for blood work on Thursday, April 25 and talked to the doctor. Jimmy's bloods were extremely low...hemoglobin was 9 (normal for him is 14) and white blood cells were .5 (normal is about 12)...they are getting lower after each treatment and he is now anemic and completely immunosuppressed. We talked to the oncology nurse, the social worker and the doctor about how we have been feeling too. The doctor's response was..."it's about time you hit this wall". The nurse and social worker both agreed and said that this was hard on, not just Jimmy, but his entire family, including his parents, but especially on Logan and I. Just by the fact that his bloods are so low isn't helping how he is feeling physically, since his physical and emotional states are so intertwined. The doctor reiterated how the chemo affects his mind as well as his body. Hence, the nightmares he has the first couple of days after treatment, coupled with the way the chemo makes him feel physically.
Basically, this sucks. Cancer sucks. But, we WILL get through this...together...as a family. I know this week has really been a downer of a week but it can only make us stronger, right? We do know there is a light at the end of this long tunnel but, right now, it is a dim pin of a light in the distance. Yes, I have resorted to cliches.
I pray for strength for our family and that God will heal Jimmy so he can be whole again. I pray that Jimmy and I will continue to think positive and support each other through this journey, unconditionally. I pray that Logan is able to understand that life as we now know it is temporary. To those reading this blog, I ask that you pray for our family too because we believe in the power of prayer and how much it can help.
On Monday, Tuesday and Wednesday, we were completely on each other's nerves. Then, the blame game began. Jimmy wondered why this was happening to him and hating the way the treatment was making him feel all of the time. He said I wasn't supportive of him and that I thought this was about me. He said he didn't understand why I was depressed since he was going through the chemo, not me. I hated the fact that our life has changed so drastically and I am wishing for things that once was. To see friends go out to dinner and families go on outings is painful for me to see. I am feeling guilty for going out and doing things for myself even though I need to do that. I have started seeing a therapist to help me sort out how I feel and to be able to say things out loud that I can't say to Jimmy. We all are depressed that vacation was cancelled and the one thing we really look forward to each year won't happen this year. We both are worried about the business as income is basically nonexistent and bills keep coming in. We are both worried about Logan and how he is handling all of this. We sat down with Jimmy's parents just to get an outside opinion about life as we know it now. It was helpful to just talk it out with someone other than the two of us.
We went to a follow-up visit for blood work on Thursday, April 25 and talked to the doctor. Jimmy's bloods were extremely low...hemoglobin was 9 (normal for him is 14) and white blood cells were .5 (normal is about 12)...they are getting lower after each treatment and he is now anemic and completely immunosuppressed. We talked to the oncology nurse, the social worker and the doctor about how we have been feeling too. The doctor's response was..."it's about time you hit this wall". The nurse and social worker both agreed and said that this was hard on, not just Jimmy, but his entire family, including his parents, but especially on Logan and I. Just by the fact that his bloods are so low isn't helping how he is feeling physically, since his physical and emotional states are so intertwined. The doctor reiterated how the chemo affects his mind as well as his body. Hence, the nightmares he has the first couple of days after treatment, coupled with the way the chemo makes him feel physically.
Basically, this sucks. Cancer sucks. But, we WILL get through this...together...as a family. I know this week has really been a downer of a week but it can only make us stronger, right? We do know there is a light at the end of this long tunnel but, right now, it is a dim pin of a light in the distance. Yes, I have resorted to cliches.
I pray for strength for our family and that God will heal Jimmy so he can be whole again. I pray that Jimmy and I will continue to think positive and support each other through this journey, unconditionally. I pray that Logan is able to understand that life as we now know it is temporary. To those reading this blog, I ask that you pray for our family too because we believe in the power of prayer and how much it can help.
Saturday, April 20, 2013
April 20, 2013 - Halfway scan results...good news and not so good news and Round 4 begins
I have not blogged in a while. It is often times cathartic but in the last few weeks have been rather depressing for me and I just didn't feel like writing. I was very anxious about the halfway scans and wondering whether the tumor has spread and whether the chemo was working. As hard as this process is for Jimmy, I'm finding that it is very hard for me too and I feel guilty when I try to do anything for myself. I am constantly tired and stressed but I feel like I need to concentrate on Jimmy and Logan, making sure that they are okay.
Jimmy was sick during the end of Round 3 and dealt with a botched PICC line insertion and pain it brought as the days went on. As usual, recovery took a little longer than the last time and blood counts were lower than the last treatment. By the end of the third week after Round 3, Jimmy was back to feeling good and got out of the house more and more.
Halfway through the chemo treatments (after the 3rd treatment), CT scan and an MRI was done to determine how/if the chemo was doing its job. We got the results on April 15, just before Round 4 started. The good news is that the cancer has not spread...what a relief. Spreading would mean to the lungs and I don't even want to go there. The bad news is that the tumor has not gotten any smaller. The doctor said that this can sometimes happen but at least the tumor has not gotten any bigger. We don't know if the chemo is killing the tumor (we won't know until surgery) but we are optimistic that that is what it is doing.
Then, Round 4 began. PICC line went on pretty much without incident...thank goodness. Even before the chemo drugs started on day one, the pre-meds made Jimmy extremely sick. After they got that under control, the rest of the week went pretty smooth. He was eating well the first couple of days and even did some laps around the oncology unit on the first day. The hydration they give him constantly makes him very bloated and uncomfortable and by the last day in the hospital, he is wiped out and not very hungry.
As for Logan, the weeks when Jimmy is in the hospital are especially hard on him. He was really missing his Daddy this week and I let him play hooky on Thursday to spend the day at the hospital with Jimmy (with his teacher's permission of course). Jimmy didn't know he was coming and it was a nice surprise for him. It was good for Logan too to just hang out with Daddy for the day.
On Friday, April 19, 2013, once we got home from the hospital, Jimmy is tired and just wants to lay down. He is feeling nauseous and he says he extremely emotional and feeling like his body wants to explode. I can't imagine a feeling like that. This morning, April 20, 2013 he has once again had vicious nightmares and did not have restful sleep. He is nauseous again but I am hoping he starts to feel better.
Thank you again to friends who provided food and help with Logan this week.
Jimmy was sick during the end of Round 3 and dealt with a botched PICC line insertion and pain it brought as the days went on. As usual, recovery took a little longer than the last time and blood counts were lower than the last treatment. By the end of the third week after Round 3, Jimmy was back to feeling good and got out of the house more and more.
Halfway through the chemo treatments (after the 3rd treatment), CT scan and an MRI was done to determine how/if the chemo was doing its job. We got the results on April 15, just before Round 4 started. The good news is that the cancer has not spread...what a relief. Spreading would mean to the lungs and I don't even want to go there. The bad news is that the tumor has not gotten any smaller. The doctor said that this can sometimes happen but at least the tumor has not gotten any bigger. We don't know if the chemo is killing the tumor (we won't know until surgery) but we are optimistic that that is what it is doing.
Then, Round 4 began. PICC line went on pretty much without incident...thank goodness. Even before the chemo drugs started on day one, the pre-meds made Jimmy extremely sick. After they got that under control, the rest of the week went pretty smooth. He was eating well the first couple of days and even did some laps around the oncology unit on the first day. The hydration they give him constantly makes him very bloated and uncomfortable and by the last day in the hospital, he is wiped out and not very hungry.
As for Logan, the weeks when Jimmy is in the hospital are especially hard on him. He was really missing his Daddy this week and I let him play hooky on Thursday to spend the day at the hospital with Jimmy (with his teacher's permission of course). Jimmy didn't know he was coming and it was a nice surprise for him. It was good for Logan too to just hang out with Daddy for the day.
On Friday, April 19, 2013, once we got home from the hospital, Jimmy is tired and just wants to lay down. He is feeling nauseous and he says he extremely emotional and feeling like his body wants to explode. I can't imagine a feeling like that. This morning, April 20, 2013 he has once again had vicious nightmares and did not have restful sleep. He is nauseous again but I am hoping he starts to feel better.
Thank you again to friends who provided food and help with Logan this week.
Wednesday, March 27, 2013
March 26, 2013 Round 3 continues
Today Jimmy is feeling good. The nurses and doctors here at Pennsylvania Hospital are really great. Yesterday, we had Joann and today we have Melissa. We love them both. Guess what??? Mo is back. Remember, the frat boy doctor. We have a new intern too...Dr. Ko. She is a tiny little doctor that looks like she is 12 but we really like her. Having a great staff taking care of you really makes all the difference. If you have to have cancer, this is truly one of the best hospitals in the country to be at for treatment. For that, we are grateful.
Jimmy is in good spirits and he is eating well. I brought him an Italian hoagie from Silvio's Deli and he asked why I didn't get him a bigger one...guess that's a good sign and one I'm very happy to see. He will have chicken tortellini soup for dinner...yum! Jimmy dreads the hospital food that arrives without fail 3 times a day.
We have also created the special Kulick Chemo Diet...you too can lose 40 pounds in 30 days, guaranteed! See before and after pictures...the results may vary and we recommend you consult a doctor before beginning this diet...LOL! See, we still have our humor!
Chemo started today a little after 5 p.m. and will take about four hours. They want to try to get him on a schedule where his chemo will start around 1 p.m. instead of so late in the day. So far, today has been a good day...if only the full moon would come and go.
Jimmy is in good spirits and he is eating well. I brought him an Italian hoagie from Silvio's Deli and he asked why I didn't get him a bigger one...guess that's a good sign and one I'm very happy to see. He will have chicken tortellini soup for dinner...yum! Jimmy dreads the hospital food that arrives without fail 3 times a day.
We have also created the special Kulick Chemo Diet...you too can lose 40 pounds in 30 days, guaranteed! See before and after pictures...the results may vary and we recommend you consult a doctor before beginning this diet...LOL! See, we still have our humor!
Chemo started today a little after 5 p.m. and will take about four hours. They want to try to get him on a schedule where his chemo will start around 1 p.m. instead of so late in the day. So far, today has been a good day...if only the full moon would come and go.
Tuesday, March 26, 2013
March 25, 2013 - Begin Round 3 of Chemo
First day of Round 3 of chemo...today was a Murphy's Law kind of day.
We headed to the doctor's office for blood work before being admitted to the hospital. We got there for our 10:30 a.m. appointment which was really supposed to be at 9:30 a.m. No worries...they still got his blood work done. Everything looks good but white blood cell counts are higher than normal range.
We went to hospital admissions and got Jimmy all "checked-in" for his stay and then he went to get his PICC line put in. They started the procedure and at the last minute, an intern wanted to do the procedure instead of Mike, who normally does it. Since this is a teaching hospital, Mike could not say no to the intern. At the time, Jimmy didn't know that he had a choice to say no either. The intern had no clue what he was doing. Normally, it would take Mike one shot of lidocaine and then about 4 minutes to complete the procedure. The intern gave him 5 shots of lidocaine and when he put the tube in the artery he kept pulling it back and forth and it was really painful for Jimmy. Finally, Jimmy asked for him to stop because it was so painful. I was waiting in his room for him and when he came in, he was really angry and his arm was really sore. Here's a picture of the PICC line...you can see where it is already started to bruise on the bottom.
By this time it is 2:30 p.m. and we are waiting for the chemo to get started. We are informed that the chemo order was entered into the hospital "system" under the wrong admission number, therefore, they cannot administer it to him. Dr. Beach (I know, a great name, right?) resubmitted the order but...you guessed it...another problem and had to be reordered yet again. This went on for hours. Jimmy finally got his chemo started around 9 p.m. and it ended about 1 a.m. This was a very long and stressful day.
Welcome to chemo treatment.
March 22, 2013 - End of Round 2
I haven't blogged since the end of the Jimmy's last treatment...life has been controlled chaos the past couple of weeks. Here's a synopsis:
When Jimmy got home, he was exhausted and slept almost all of the first few days. He had hallucinations and bad dreams for the first couple of days as well. He was nauseous but thankfully, never threw up. He continued to be tired and lethargic and finally started getting up and around by the end of the week. His doctor visit on March 14 showed his white blood cell count even more depleted than the last time. He has to be so careful to stay away from people who are sick or have just recently been sick. We are very happy that the pain is next to nothing compared to what it was a month ago.
Logan had a very rough two weeks too. He needed to take a break from every day life so he spent more time with just Jimmy and I to begin to feel more comfortable with our "new" temporary normal. He is definitely in a better place now but I hope he will continue to understand that Daddy will get well and that the chemo is what is making him so sick right now. He says he understands but he is still just a little boy. I know I have said this before but if I could shield him from all of this, I would. He should not have to see his Dad get so sick.
Here we go again...round 3 of the chemo shuffle...
When Jimmy got home, he was exhausted and slept almost all of the first few days. He had hallucinations and bad dreams for the first couple of days as well. He was nauseous but thankfully, never threw up. He continued to be tired and lethargic and finally started getting up and around by the end of the week. His doctor visit on March 14 showed his white blood cell count even more depleted than the last time. He has to be so careful to stay away from people who are sick or have just recently been sick. We are very happy that the pain is next to nothing compared to what it was a month ago.
Logan had a very rough two weeks too. He needed to take a break from every day life so he spent more time with just Jimmy and I to begin to feel more comfortable with our "new" temporary normal. He is definitely in a better place now but I hope he will continue to understand that Daddy will get well and that the chemo is what is making him so sick right now. He says he understands but he is still just a little boy. I know I have said this before but if I could shield him from all of this, I would. He should not have to see his Dad get so sick.
Here we go again...round 3 of the chemo shuffle...
Friday, March 8, 2013
March 8, 2013 - End of Round 2
Thursday, March 7, 2013 Jimmy was very tired. He had a night nurse that, instead of letting him rest and try to sleep, kept turning the lights on and waking him up and trying to chat...ugh. Needless to say, that nurse will not be Jimmy's nurse again. Jimmy also felt nauseous off and on all day and the chemo was starting to take its toll again. By this time, the chemo has been going for 3 days and Jimmy has no energy whatsoever.
Mo, the resident I spoke about before, had some medical students going around to see different patients and he wanted them to talk to Jimmy about his cancer. They were eager to listen and seemed very interested in his case. Dr. Cohen, the resident with them, is also specializing in oncology. She was very nice and equally as thankful about us letting the medical students talk to us.
Its Friday, March 8, 2013 and Jimmy leaves the hospital. He is anxious to get home. When I arrive, he is sick to his stomach and seems weak. I hate what this is doing to him. Before we can head home, we have to head over to the doctor's office for an injection that will help with his white blood count. The office is only about a city block away and I'm scared that Jimmy will not be able to make it, especially while it is snowing. He has been in the bed for 4 1/2 days and gets tired very quickly. We get to the office and, luckily, it doesn't take very long to get the injection so we can be on our way.
Jimmy seems optimistic that the chemo is working and that he feels like the tumor area in his leg has gotten smaller. At least his pain has subsided and for that we are very happy. At this point, we are thankful for any improvement and are looking forward to the end of the next treatment. He will then have another scan to see how the chemo is really working. For now, we have two weeks to recover from this round before the next one begins.
As for Logan and I this week, Logan is having a very tough time of it. I'm concerned and wish I knew how to make this better for him. I don't want him to feel like he has to worry about Jimmy, but with Jimmy gone all week, it is very hard on both of us. Just having Jimmy home makes it easier for everyone. As for me, I'm exhausted and emotionally drained this week. More so than the last round I think. We are in this for several more months and I need to stay strong and positive.
Thankfully, we have the support of friends and family that continue to pray for us, bring us food and help us with Logan.
Mo, the resident I spoke about before, had some medical students going around to see different patients and he wanted them to talk to Jimmy about his cancer. They were eager to listen and seemed very interested in his case. Dr. Cohen, the resident with them, is also specializing in oncology. She was very nice and equally as thankful about us letting the medical students talk to us.
Its Friday, March 8, 2013 and Jimmy leaves the hospital. He is anxious to get home. When I arrive, he is sick to his stomach and seems weak. I hate what this is doing to him. Before we can head home, we have to head over to the doctor's office for an injection that will help with his white blood count. The office is only about a city block away and I'm scared that Jimmy will not be able to make it, especially while it is snowing. He has been in the bed for 4 1/2 days and gets tired very quickly. We get to the office and, luckily, it doesn't take very long to get the injection so we can be on our way.
Jimmy seems optimistic that the chemo is working and that he feels like the tumor area in his leg has gotten smaller. At least his pain has subsided and for that we are very happy. At this point, we are thankful for any improvement and are looking forward to the end of the next treatment. He will then have another scan to see how the chemo is really working. For now, we have two weeks to recover from this round before the next one begins.
As for Logan and I this week, Logan is having a very tough time of it. I'm concerned and wish I knew how to make this better for him. I don't want him to feel like he has to worry about Jimmy, but with Jimmy gone all week, it is very hard on both of us. Just having Jimmy home makes it easier for everyone. As for me, I'm exhausted and emotionally drained this week. More so than the last round I think. We are in this for several more months and I need to stay strong and positive.
Thankfully, we have the support of friends and family that continue to pray for us, bring us food and help us with Logan.
Wednesday, March 6, 2013
March 5, 2013 - The Hiccups Have Arrived
On Tuesday, March 5, brought the hiccups...all day long. Apparently, the hiccups is a side effect of the chemo and Jimmy had the hiccups for hours on end. He would have them for a while and they would go away. Just when you thought they were gone for good, they were back. They became painful and he finally had to get something to take to make them go away. Of course, that something knocked him out...well, at least the hiccups were gone, right?
As for me, I was exhausted but couldn't sleep. It just isn't the same without Jimmy home. Logan, on the other hand, passed out as soon as his head hit the pillow.
Wednesday, March 6, brought another day of morning nausea. Jimmy said it wasn't too bad but I hate that I can't make it better for him. I was running late and got to the hospital later than usual but it was a very quiet and restful visit. The chemo went well and there was no sign of the hiccups today.
I must give kudos to the doctors and nurses at the hospital. They are such a fabulous team of people and we couldn't ask for a better support system. First, there is Dr. Hartner, the oncologist. He is blunt and to the point and exactly what we needed when starting this nightmare. He looked us right in the eyes and answered every panic stricken question we had. There's Laetitia, Dr. Hartner's oncology nurse. If I had a sister, this is who I would want, someone who is kind, gives great advice, is a great listener and is very comforting. We both love her. Carla, their assistant, is always helpful when we call and makes it very clear that we can call her anytime with any question or concern we might have. We like to call them the Disney team of medicine since their service is above and beyond anything we've ever had. They anticipate what we need before we even need it. It makes us feel very safe in the uncertain world we are now living in.
At the hospital, there are a few nurses that we really like. Joanne, she's terrific. She just adopted a puppy named Trixie and donated her hair for cancer patients. There's Debbie. She's an overnight nurse (I can't imagine having this job) and has a very cool personality. She has even named Jimmy's IV machine, "George". Not sure why but, hey, somehow it works. There are a couple of residents this round that seem more like fraternity boys than doctors. They are Oren and Mo. They are funny and have a dry sense of humor. Jimmy said that he can picture Mo in a beer drinking contest in a dive bar somewhere.
All I can say is that for now, so far, so good. Round 2 is almost over and we are taking one day at a time.
As for me, I was exhausted but couldn't sleep. It just isn't the same without Jimmy home. Logan, on the other hand, passed out as soon as his head hit the pillow.
Wednesday, March 6, brought another day of morning nausea. Jimmy said it wasn't too bad but I hate that I can't make it better for him. I was running late and got to the hospital later than usual but it was a very quiet and restful visit. The chemo went well and there was no sign of the hiccups today.
I must give kudos to the doctors and nurses at the hospital. They are such a fabulous team of people and we couldn't ask for a better support system. First, there is Dr. Hartner, the oncologist. He is blunt and to the point and exactly what we needed when starting this nightmare. He looked us right in the eyes and answered every panic stricken question we had. There's Laetitia, Dr. Hartner's oncology nurse. If I had a sister, this is who I would want, someone who is kind, gives great advice, is a great listener and is very comforting. We both love her. Carla, their assistant, is always helpful when we call and makes it very clear that we can call her anytime with any question or concern we might have. We like to call them the Disney team of medicine since their service is above and beyond anything we've ever had. They anticipate what we need before we even need it. It makes us feel very safe in the uncertain world we are now living in.
At the hospital, there are a few nurses that we really like. Joanne, she's terrific. She just adopted a puppy named Trixie and donated her hair for cancer patients. There's Debbie. She's an overnight nurse (I can't imagine having this job) and has a very cool personality. She has even named Jimmy's IV machine, "George". Not sure why but, hey, somehow it works. There are a couple of residents this round that seem more like fraternity boys than doctors. They are Oren and Mo. They are funny and have a dry sense of humor. Jimmy said that he can picture Mo in a beer drinking contest in a dive bar somewhere.
All I can say is that for now, so far, so good. Round 2 is almost over and we are taking one day at a time.
Tuesday, March 5, 2013
March 4, 2013 - Round 2 - First Day
Today was a very long day and a nerve wracking day. We just want all to go smoothly so he can get in the hospital and get chemo started. Unlike last time when he lost a whole day and didn't get started until Tuesday.
First a doctor's appointment with the oncologist to check blood cell counts to make sure that all was okay to start chemo again. Good counts came back so all is a go for today.
Next he was off to get his PICC again. In case I didn't explain this the last time, it is an IV-like line that is put in Jimmy's upper arm with a tube inserted in an artery directly to the heart, so that's the first place the chemo goes. It is a surgical procedure done with local anesthesia. This is something he was to have done every time he goes into the hospital since it is removed each time he leaves.
Once that gets done, he's off to his room. Of course, by the time this happens it is late in the afternoon and chemo doesn't get started until around 4:30 p.m. This means he won't get finished until around 8:30 p.m. Normally, it gets started at around noon. When the chemo gets started, Jimmy was getting really nauseous and his stomach hurt. The nurse gave him something to curb this and it wasn't long before he was feeling better. Thank goodness. He did eat a little something and I was happy he was able to do so.
After he settled in to the chemo treatment, I decided to take a couple of pics of my model patient, including one of the skyline, which was really nice. We saw a really nice sunset too...something normal and calming. See the pictures below of my model...LOL. All-in-all, it was a good start to getting this second treatment over.
Thankfully, a friend had brought dinner over and I was so grateful. By the time I got home, I was starving and tired. It was really nice to come home and have dinner waiting. Thanks...dinner was yummy!
First a doctor's appointment with the oncologist to check blood cell counts to make sure that all was okay to start chemo again. Good counts came back so all is a go for today.
Next he was off to get his PICC again. In case I didn't explain this the last time, it is an IV-like line that is put in Jimmy's upper arm with a tube inserted in an artery directly to the heart, so that's the first place the chemo goes. It is a surgical procedure done with local anesthesia. This is something he was to have done every time he goes into the hospital since it is removed each time he leaves.
Once that gets done, he's off to his room. Of course, by the time this happens it is late in the afternoon and chemo doesn't get started until around 4:30 p.m. This means he won't get finished until around 8:30 p.m. Normally, it gets started at around noon. When the chemo gets started, Jimmy was getting really nauseous and his stomach hurt. The nurse gave him something to curb this and it wasn't long before he was feeling better. Thank goodness. He did eat a little something and I was happy he was able to do so.
After he settled in to the chemo treatment, I decided to take a couple of pics of my model patient, including one of the skyline, which was really nice. We saw a really nice sunset too...something normal and calming. See the pictures below of my model...LOL. All-in-all, it was a good start to getting this second treatment over.
Thankfully, a friend had brought dinner over and I was so grateful. By the time I got home, I was starving and tired. It was really nice to come home and have dinner waiting. Thanks...dinner was yummy!
 |
| Glad to have Round 2 started |
 |
| My Model with his prop |
 |
| The view from the room making it a little easier |
Sunday, March 3, 2013
March 3, 2013 - Shaving Day
I went out to run some errands and when I got home, he came into the room and scared the crap out of me...I didn't recognize him at first. I guess he's not the only one who's going to have to get used to it. Even the dog looked at Jimmy funny when he first saw him.
Well, we are off to the hospital tomorrow for Round 2. We are hoping for the best and praying that Jimmy gets through this round without getting too sick.
Thank you again (I know I've already said this a lot) to those who have brought us food and who are so graciously helping us with Logan. It truly is appreciated and it means a lot to know we have friends that we can count on.
Friday, March 1, 2013
March 1, 2013 - Round 1 - end of third week
Here's a recap of this week. Monday, February 25, was an especially hard day for both Jimmy and I. He was not feeling well and I was very depressed about what's going on. He was in pain and tired. I noticed that his hair was really starting to thin and it bothered me because I was worried about how he was dealing with it. For most of the day I cried and just wanted all of this to stop. We worried about whether or not the chemo was working. What if it is going to work? What if it doesn't...what then? What is going to happen with our business? What if we can't pay the bills, not to mention all of the medical bills that are starting to come in? Omg, he's lost so much weight (about 35 lbs. already). It was truly a day of worry and emotion. Normally, when one of us is having an especially bad day, the other one is there for support. This was a day that neither of us could help the other one.
That night, Jimmy's Mom and Godmother came for a visit. His Mom brought lasagna...his favorite. Nothing like a visit from family and Mom's cooking to make you feel better.
Logan also had a great week this week. Things were back to his normal schedule with school and extracurricular activities and he seemed okay with how life has changed for our family. Of course, this is just in time for the next treatment to start. On Monday, Jimmy goes back into the hospital for his second round of chemo. So, he will relax and enjoy the weekend before it starts all over again. Our new motto is "Kulicks Kicking Cancer"...bring it on...we will beat you!
Tuesday, February 26, could not come soon enough. Both Tuesday and Wednesday were much better days. Jimmy felt good and even went out during both days. His pain was under control and the days seemed almost like the days before cancer had come into our lives.
Thursday, February 28, was a day of realization. Jimmy woke up to his hair coming out in clumps. He said that his head had felt "prickly" for the last few days and it hurt to push his hair against the way it grows. So, it was decision time about cutting his hair shorter or shaving his head. He opted for cutting it really, really short...to avoid the shock value, I think. We both helped with the process which was good for both of us. As you can see, he still looked quite handsome with the shorter hair...as I knew he would.
Thursday, February 28, was a day of realization. Jimmy woke up to his hair coming out in clumps. He said that his head had felt "prickly" for the last few days and it hurt to push his hair against the way it grows. So, it was decision time about cutting his hair shorter or shaving his head. He opted for cutting it really, really short...to avoid the shock value, I think. We both helped with the process which was good for both of us. As you can see, he still looked quite handsome with the shorter hair...as I knew he would.
 |
| BEFORE |
 |
| GOODBYE HAIR |
 |
| THE RESULT |
That night, Jimmy's Mom and Godmother came for a visit. His Mom brought lasagna...his favorite. Nothing like a visit from family and Mom's cooking to make you feel better.
Logan also had a great week this week. Things were back to his normal schedule with school and extracurricular activities and he seemed okay with how life has changed for our family. Of course, this is just in time for the next treatment to start. On Monday, Jimmy goes back into the hospital for his second round of chemo. So, he will relax and enjoy the weekend before it starts all over again. Our new motto is "Kulicks Kicking Cancer"...bring it on...we will beat you!
Saturday, February 23, 2013
February 23, 2013 - 1st Chemo Cycle, Second Week
It has been a week of emotion and realization that this is really happening. The running theme is pain, some nausea, fatigue and a slight fever. Some days are definitely better than others. The beginning of the week Jimmy was very tired and in a lot of pain and he even had a mouth sore. He has stayed in bed most of time and his mood has been optimistic. I am grateful that he hasn't been throwing up like we expected. Thank you God for small favors.
On Thursday, February 21, 2013, he had a follow-up visit with the oncologist to check his progress and blood counts. He has lost 30 pounds and as expected, his white blood cell count is non-existent and he is very susceptible to anything and everything at this point. If he were to get sick right now, it could be very dangerous for him. I don't like that we have had to tell people that they can't come visit, but I know they understand. By the middle of next week, his counts should be back to normal. The nurse also said that Jimmy would definitely lose his hair. I really don't want this to happen but I'm not holding out much hope since it already appears to be thinning. I can't believe that my "Samson" won't have hair. That's his trademark. Well then, he will just have to rock the Kojak look.
Friday, February 22, brought a day of Jimmy feeling really good. He even wanted to get out of the house and do a little driving around. However, he has now paid the price for all of that running around. Today, Saturday, February 23, 2013 is not a good. day. He is depressed and in pain, both in his leg and his back. He is having some other issues as well and the chemo has caused any little nick or abrasion he gets to become a raging mess. The cold, rainy weather isn't helping his mood either I imagine.
This morning was a morning of a lot of negative conversation. It is very hard for me to hear when Jimmy starts to become negative. Where is my strong, positive husband? I wish that this wasn't happening but its too late for what ifs. I hate cancer. It is controlling our lives right now and there is nothing we can do about it. We WILL beat this and I will do everything I can to make sure that happens.
As for Logan and I, I continue to be exhausted but want to continue to be the rock that Jimmy and Logan need through this process. Logan is having a tough time controlling his emotions and has been acting out. It truly hurts my heart that I can't shield him from all of this because I know he doesn't really understand.
I do want to continue to thank everyone for their prayers and support, including those who have brought us food and offered to help and have helped with Logan. Thank you also to my friends (you know who you are) who have let me vent when I needed to do so.
On Thursday, February 21, 2013, he had a follow-up visit with the oncologist to check his progress and blood counts. He has lost 30 pounds and as expected, his white blood cell count is non-existent and he is very susceptible to anything and everything at this point. If he were to get sick right now, it could be very dangerous for him. I don't like that we have had to tell people that they can't come visit, but I know they understand. By the middle of next week, his counts should be back to normal. The nurse also said that Jimmy would definitely lose his hair. I really don't want this to happen but I'm not holding out much hope since it already appears to be thinning. I can't believe that my "Samson" won't have hair. That's his trademark. Well then, he will just have to rock the Kojak look.
Friday, February 22, brought a day of Jimmy feeling really good. He even wanted to get out of the house and do a little driving around. However, he has now paid the price for all of that running around. Today, Saturday, February 23, 2013 is not a good. day. He is depressed and in pain, both in his leg and his back. He is having some other issues as well and the chemo has caused any little nick or abrasion he gets to become a raging mess. The cold, rainy weather isn't helping his mood either I imagine.
This morning was a morning of a lot of negative conversation. It is very hard for me to hear when Jimmy starts to become negative. Where is my strong, positive husband? I wish that this wasn't happening but its too late for what ifs. I hate cancer. It is controlling our lives right now and there is nothing we can do about it. We WILL beat this and I will do everything I can to make sure that happens.
As for Logan and I, I continue to be exhausted but want to continue to be the rock that Jimmy and Logan need through this process. Logan is having a tough time controlling his emotions and has been acting out. It truly hurts my heart that I can't shield him from all of this because I know he doesn't really understand.
I do want to continue to thank everyone for their prayers and support, including those who have brought us food and offered to help and have helped with Logan. Thank you also to my friends (you know who you are) who have let me vent when I needed to do so.
Sunday, February 17, 2013
February 17, 2013 - Round One Down
February 14 - Happy Valentine's Day. I never thought I would ever have to say that my husband would have cancer but it is at a time like this when you realize how much you love someone. I can't imagine life without Jimmy and I pray to God that He will make him well and whole again.
Jimmy called me this morning to tell me that the doctors thought he had a urinary tract infection and that there were a couple of other things going on. I wanted to get to the hospital asap but Logan wanted to see his Dad for Valentine's Day. It really meant a lot to him (even thought he would miss his class party), so I let him get out of school early. Logan made Jimmy a card in the morning and I picked up a dozen balloons and some candy and off we went. Logan was very excited to see his Dad and Jimmy was just as excited to see Logan. Aside from the location, it seemed normal for all of us to be together. Our Valentine's dinner included cafeteria burgers and fries and a heart-shaped box of candy for dessert. It didn't matter what we ate or where we were, but that we were all together. I could tell Jimmy was in better spirits during the visit and Logan seemed more at ease after he saw Jimmy (he was relieved that Daddy still looks like himself)...very comforting to see.
February 15 - I got to the hospital early and wanted to spend the entire day just in case something else came up. Today is the last chemo treatment for this round. Jimmy is feeling nauseous this morning and is very tired. This seems to be getting worse as the days go on. His leg seems to hurt more every time he gets up too.
The oncology nurse came before I even got there and gave Jimmy all of his medication to take home and continue to take until the next treatment...11 different ones every day, some more than once. It is overwhelming in both volume and cost. Thankfully, the doctor gave us the first dose of the most important medicine that has to be taken after chemo ends...it costs $3,600.
I am exhausted and stressed beyond belief. I just want this to work and to be able to get through it with a positive result for Jimmy. It is really hard to see him in a hospital bed every day getting weaker and constantly in pain.
I decided to spend the night at the hospital since the doctors anticipated Jimmy going home the next day and so I wouldn't have to go back and forth again. We just talked and watched television all day. It was nice to just be together but Jimmy seemed a little agitated today. I'm guessing it was anxiety about just wanting to get the chemo treatment over coupled with the fact that he hates being sick. During the treatment, (which is 3 hours for the one medicine) the medicine didn't want to drip properly into the PICC and instead of 3 hours it took almost 4 to finish.
February 16 - It is Saturday and the day Jimmy gets to go home. Thank goodness. It was a long night in a very uncomfortable cot but I got to be with Jimmy all night and I was getting to take him home...finally. This was another long week. Poor Logan got shuffled around all week and I know he will be happy to just be at home. Even the dog acted weird all week.
The doctor came in and told us that the results of the urinary tract infection test were negative. A little good news...we'll take any we can get at this point. He also told us that all of Jimmy's blood counts were still normal but that we should expect them to drop dramatically as the week went on. Jimmy was very tired but ready to go home.
For those of you who have asked about visiting, Jimmy isn't really up to visitors just yet. He just wants to relax and try to feel better right now. We want to thank everyone for all of the kind well wishes and prayers, and those of you who have dropped off food and goodies. It really means a lot to all of us.
Jimmy spent the rest of the weekend in bed. He was still very nauseous and tired. He is pale and continues to lose weight. The hair loss should start in the next 10 days or so. Even though round one of the chemo treatment is finished, his body is still dealing with the consequences. He says he is having weird, nightmarish dreams at night too. It feels like we are on a runaway train...I wish I could do something, anything to make it stop.
The bills have started coming in too...$10,000 worth of bills before the chemo treatment ever started...ugh.
Jimmy called me this morning to tell me that the doctors thought he had a urinary tract infection and that there were a couple of other things going on. I wanted to get to the hospital asap but Logan wanted to see his Dad for Valentine's Day. It really meant a lot to him (even thought he would miss his class party), so I let him get out of school early. Logan made Jimmy a card in the morning and I picked up a dozen balloons and some candy and off we went. Logan was very excited to see his Dad and Jimmy was just as excited to see Logan. Aside from the location, it seemed normal for all of us to be together. Our Valentine's dinner included cafeteria burgers and fries and a heart-shaped box of candy for dessert. It didn't matter what we ate or where we were, but that we were all together. I could tell Jimmy was in better spirits during the visit and Logan seemed more at ease after he saw Jimmy (he was relieved that Daddy still looks like himself)...very comforting to see.
February 15 - I got to the hospital early and wanted to spend the entire day just in case something else came up. Today is the last chemo treatment for this round. Jimmy is feeling nauseous this morning and is very tired. This seems to be getting worse as the days go on. His leg seems to hurt more every time he gets up too.
The oncology nurse came before I even got there and gave Jimmy all of his medication to take home and continue to take until the next treatment...11 different ones every day, some more than once. It is overwhelming in both volume and cost. Thankfully, the doctor gave us the first dose of the most important medicine that has to be taken after chemo ends...it costs $3,600.
I am exhausted and stressed beyond belief. I just want this to work and to be able to get through it with a positive result for Jimmy. It is really hard to see him in a hospital bed every day getting weaker and constantly in pain.
I decided to spend the night at the hospital since the doctors anticipated Jimmy going home the next day and so I wouldn't have to go back and forth again. We just talked and watched television all day. It was nice to just be together but Jimmy seemed a little agitated today. I'm guessing it was anxiety about just wanting to get the chemo treatment over coupled with the fact that he hates being sick. During the treatment, (which is 3 hours for the one medicine) the medicine didn't want to drip properly into the PICC and instead of 3 hours it took almost 4 to finish.
February 16 - It is Saturday and the day Jimmy gets to go home. Thank goodness. It was a long night in a very uncomfortable cot but I got to be with Jimmy all night and I was getting to take him home...finally. This was another long week. Poor Logan got shuffled around all week and I know he will be happy to just be at home. Even the dog acted weird all week.
The doctor came in and told us that the results of the urinary tract infection test were negative. A little good news...we'll take any we can get at this point. He also told us that all of Jimmy's blood counts were still normal but that we should expect them to drop dramatically as the week went on. Jimmy was very tired but ready to go home.
For those of you who have asked about visiting, Jimmy isn't really up to visitors just yet. He just wants to relax and try to feel better right now. We want to thank everyone for all of the kind well wishes and prayers, and those of you who have dropped off food and goodies. It really means a lot to all of us.
Jimmy spent the rest of the weekend in bed. He was still very nauseous and tired. He is pale and continues to lose weight. The hair loss should start in the next 10 days or so. Even though round one of the chemo treatment is finished, his body is still dealing with the consequences. He says he is having weird, nightmarish dreams at night too. It feels like we are on a runaway train...I wish I could do something, anything to make it stop.
The bills have started coming in too...$10,000 worth of bills before the chemo treatment ever started...ugh.
Wednesday, February 13, 2013
February 13, 2013 - 1st chemo treatment
NOTE: I am writing every few days so some info will be in past tense and other will be in present tense. I wish I could write every day but so far I just haven't had the time.
We did have a nice weekend...we even took Logan and a friend bowling. Jimmy came along and watched and it was nice for all of us to get out and do something even if Jimmy wasn't able to participate in the actual activity.
Monday came and we were headed to the hospital. We got a call that morning saying a bed was ready for Jimmy and that we could come anytime. We got to the hospital around 11 am and went to registration. They told us to have a seat and they would be with us soon. We waited and waited...for 2 hours...and I finally went back up to the desk. They said a bed wasn't ready but they called to check and...lo and behold, it had been ready the whole time...ugh! By the time he got to his room and was settled, it was about 1:30 p.m. Of course, by this time, it was too late to get his PICC line and start chemo. Basically, he stayed overnight in the hospital when he didn't even have to be there. Oh well, just one more bump in the road, right?.
Tuesday, February 12 - 1st chemo treatment. Jimmy got his PICC line put in early in the morning. We were very nervous about his first treatment...mostly because we didn't know what to expect. There is about 45 minutes of "prep" drugs before the chemo even starts. Then, the first chemo drug starts...it is bright red and the nurse pushes it through the PICC in just a couple of minutes. He said he could taste it and feel it going through his chest, into his heart and start traveling through his body. The second chemo drug takes about 3 hours. His treatment started about noon and he was finished by 4:30. He felt a little lightheaded most of the day but I think it was from not eating. We also spoke to a social worker about a lot of different things and I feel so overwhelmed with all of the information we have been given. All in all, it was a good first day...even with Jimmy taking about 10 or 11 different medications.
It is Wednesday morning and I'm trying to get to the hospital early so I can bring Jimmy his Starbucks Venti Bold. He said it makes him still feel normal. They tell us that chemo may change his taste buds and that things won't taste the same...I can't imagine the day when Starbucks coffee won't taste good to him.
He is feeling a little nauseous this morning and isn't very hungry. He did have a little something for breakfast but by lunch time he hardly ate a thing. Jimmy's Dad came for a visit and I was able to leave a little early so that I could come home and spend some time with Logan. I hate having to ask people to watch him for me. It seems like he's been shuffled all over the place this week. Poor kid. He really misses his Dad but we Skype Jimmy every night so Logan can "see" him and talk to him. Logan and I did have a fun night...we even had "breakfast" for dinner...blueberry pancakes...yum.
Tomorrow is Valentine's Day and my Honey is in the hospital. This sucks. I hate cancer.
We did have a nice weekend...we even took Logan and a friend bowling. Jimmy came along and watched and it was nice for all of us to get out and do something even if Jimmy wasn't able to participate in the actual activity.
Monday came and we were headed to the hospital. We got a call that morning saying a bed was ready for Jimmy and that we could come anytime. We got to the hospital around 11 am and went to registration. They told us to have a seat and they would be with us soon. We waited and waited...for 2 hours...and I finally went back up to the desk. They said a bed wasn't ready but they called to check and...lo and behold, it had been ready the whole time...ugh! By the time he got to his room and was settled, it was about 1:30 p.m. Of course, by this time, it was too late to get his PICC line and start chemo. Basically, he stayed overnight in the hospital when he didn't even have to be there. Oh well, just one more bump in the road, right?.
Tuesday, February 12 - 1st chemo treatment. Jimmy got his PICC line put in early in the morning. We were very nervous about his first treatment...mostly because we didn't know what to expect. There is about 45 minutes of "prep" drugs before the chemo even starts. Then, the first chemo drug starts...it is bright red and the nurse pushes it through the PICC in just a couple of minutes. He said he could taste it and feel it going through his chest, into his heart and start traveling through his body. The second chemo drug takes about 3 hours. His treatment started about noon and he was finished by 4:30. He felt a little lightheaded most of the day but I think it was from not eating. We also spoke to a social worker about a lot of different things and I feel so overwhelmed with all of the information we have been given. All in all, it was a good first day...even with Jimmy taking about 10 or 11 different medications.
It is Wednesday morning and I'm trying to get to the hospital early so I can bring Jimmy his Starbucks Venti Bold. He said it makes him still feel normal. They tell us that chemo may change his taste buds and that things won't taste the same...I can't imagine the day when Starbucks coffee won't taste good to him.
He is feeling a little nauseous this morning and isn't very hungry. He did have a little something for breakfast but by lunch time he hardly ate a thing. Jimmy's Dad came for a visit and I was able to leave a little early so that I could come home and spend some time with Logan. I hate having to ask people to watch him for me. It seems like he's been shuffled all over the place this week. Poor kid. He really misses his Dad but we Skype Jimmy every night so Logan can "see" him and talk to him. Logan and I did have a fun night...we even had "breakfast" for dinner...blueberry pancakes...yum.
Tomorrow is Valentine's Day and my Honey is in the hospital. This sucks. I hate cancer.
Saturday, February 9, 2013
February 2013 - It Begins
On Friday, February 1, Jimmy went in for a biopsy at Pennsylvania Hospital. It was an outpatient procedure that would require a "twilight" kind of anesthesia and would take a few hours from start to finish. Jimmy was nervous about the anesthesia. His experience at the dentist with anesthesia had always been a terrible one, so he was not looking forward to this at all. I have had several surgeries and told him it should be fine. Take a deep breath and just relax I told him.
We brought Logan with us, since he only had a half day at school and because I really needed the company and the distraction. Logan and I walked around and had some breakfast while we waited. We read, played games and watched television to pass the time. Jimmy finally came out and was a little woozy but not in pain since the anesthesia was still working somewhat. We had been told that we would most likely get the results of the biopsy in 3-4 days.
So, we waited.
And waited.
This was the longest weekend that either of us could ever remember. We laughed. We cried. We were positive. We were negative. We were still in shock.
Finally, on Tuesday, February 5, Dr. Hartner called. Our worst fear was true...it was CANCER. He confirmed that it was a sarcoma but that the subcategory had yet to be determined. He gave us a lot of information to digest but said Jimmy would start treatment as soon as possible, the following week. He would have 6 rounds of chemo, 6 rounds of radiation and then surgery. After the first 3 weeks of chemo, he would be checked out to see how he was tolerating the chemo and if it was working or not. If it was working, chemo would continue. If not, radiation would begin. Chemo is a 3 week cycle. The first week would include 4 days of chemo with the following two weeks off. That night, we both cried as we held each other, not knowing what the future would hold for our family.
The wheels were in motion. More tests were scheduled on Friday, February 8...a CT scan to see if the cancer had spread to Jimmy's lungs as well as an Echocardiogram to see how healthy Jimmy's heart was and whether or not it could withstand the chemotherapy drugs the doctor wanted to use. A outpatient procedure was also been scheduled at the hospital for Monday, February 11, to put a port in Jimmy's chest for the ongoing chemo treatments. The doctor also wanted home health care to monitor Jimmy's fluid levels and white blood cell counts. He told us they would contact us directly to set that up.
How everyone is doing at this point -
Logan is having trouble digesting all of this information. He is only 10 years old and is worried. He asked this morning if it (cancer) was contagious. He also had a really tough day at school today. I feel really bad for him and want to make it better so he is not so afraid. He knows what's going on but doesn't really know what's going on.
As for me, I'm terrified of what the future holds. Jimmy is the strong one who takes care of us. We have our own business and I'm worried what will happen to the business since Jimmy runs it. How will I keep the household going without Jimmy's help? How will I keep things normal for Logan? I have posted what's going on on Facebook and everyone has been so supportive. The thoughts, prayers and comments from friends and family mean more than I can ever say. It doesn't seem like "thank you" is enough. I have to be strong and positive...that's what I keep telling myself whether I believe it or not.
Jimmy is also experiencing fever and chills every night. When he wakes up the sheets are soaked. He is in pain. Thank goodness for the medication. He cries in the early morning hours when Logan and I are asleep. He is still processing the fact that he has cancer. Everything is moving so fast. Less than 2 weeks ago, it was just a hamstring issue, or so he thought. Never did he think this would ever happen to him.
In the afternoon on February 7, the home health care company contacted us. They told us there was a problem getting a pre-authorization from the insurance company "due to a pre-existing condition". WHAT??!!! What does that mean? Jimmy has never had cancer before so what was going on. I contacted the insurance company, Blue Cross Blue Shield, and was informed that there in fact was a problem. They told me that the pre-existing condition was not because of the cancer diagnosis but because we had had a lapse in coverage. We did go without insurance for a period of time before obtaining this policy, however, I didn't understand how this could be happening. The cancer diagnosis was well after the policy went into effect. The policy language regarding this is very broad and non-specific, so it appeared that we should be covered without question. The customer service representative told me that he would look into it further and call me the next day.
On February 8, which would turn out to be a day filled with lots of emotion and turmoil, from beginning to end. First thing in the morning, Blue Cross called. They said that they considered any treatment that Jimmy had for the cancer, would not be covered at all since they considered it to be pre-existing. OMG! I was mad. I was scared. I cried. Jimmy was mad and scared. Would Jimmy be able to get treatment if he essentially had no insurance? We both felt defeated. Now what?
I immediately called the doctor's office. I told Carla, Dr. Hartner's secretary, what was going on. She said she would contact the billing department and see what she could find out. I asked whether or not Jimmy could be denied treatment and she said she didn't know.
Wasn't it already bad enough? We are already terrified of Jimmy having cancer and wondering if it has spread. We are worried about having an income since Jimmy is self-employed and I stay at home. Now this?
Jimmy went to his CT scan and Echo appointments with his Mom while I stayed at home and made phone calls trying to straighten out this insurance mess. I even called a lawyer and got papers to file a claim with the PA Insurance Commission.
I got a call from Laetitia, Dr. Hartner's nurse, assuring me that Jimmy would not be denied treatment. Thank God! She said she was working with the billing department to see how to work this all out. Finally, after many phone calls, it was decided that Jimmy would not get his chemo on a outpatient basis. He would now be admitted to the hospital for the entire week of treatment. He would also not need the port put in since he would be in the hospital and not travelling back and forth every day for treatment. Home care would not be needed either.
Laetitia and I talked for a long time and she assured me that Jimmy would get the care he needed. She said that a hospital social worker would talk to us about billing and try to help us get some sort of assistance for the bills.
Jimmy got the scans done and we were again waiting for news of whether or not the cancer had spread. Laetitia called late in the day...the cancer has NOT spread. Thank you Lord Jesus! Some good news at last!
Today was very emotional and I'm glad its over. We will relax over the weekend and get ready for our family's new normal starting this Monday, February 11.
So, we waited.
And waited.
This was the longest weekend that either of us could ever remember. We laughed. We cried. We were positive. We were negative. We were still in shock.
Finally, on Tuesday, February 5, Dr. Hartner called. Our worst fear was true...it was CANCER. He confirmed that it was a sarcoma but that the subcategory had yet to be determined. He gave us a lot of information to digest but said Jimmy would start treatment as soon as possible, the following week. He would have 6 rounds of chemo, 6 rounds of radiation and then surgery. After the first 3 weeks of chemo, he would be checked out to see how he was tolerating the chemo and if it was working or not. If it was working, chemo would continue. If not, radiation would begin. Chemo is a 3 week cycle. The first week would include 4 days of chemo with the following two weeks off. That night, we both cried as we held each other, not knowing what the future would hold for our family.
The wheels were in motion. More tests were scheduled on Friday, February 8...a CT scan to see if the cancer had spread to Jimmy's lungs as well as an Echocardiogram to see how healthy Jimmy's heart was and whether or not it could withstand the chemotherapy drugs the doctor wanted to use. A outpatient procedure was also been scheduled at the hospital for Monday, February 11, to put a port in Jimmy's chest for the ongoing chemo treatments. The doctor also wanted home health care to monitor Jimmy's fluid levels and white blood cell counts. He told us they would contact us directly to set that up.
How everyone is doing at this point -
Logan is having trouble digesting all of this information. He is only 10 years old and is worried. He asked this morning if it (cancer) was contagious. He also had a really tough day at school today. I feel really bad for him and want to make it better so he is not so afraid. He knows what's going on but doesn't really know what's going on.
As for me, I'm terrified of what the future holds. Jimmy is the strong one who takes care of us. We have our own business and I'm worried what will happen to the business since Jimmy runs it. How will I keep the household going without Jimmy's help? How will I keep things normal for Logan? I have posted what's going on on Facebook and everyone has been so supportive. The thoughts, prayers and comments from friends and family mean more than I can ever say. It doesn't seem like "thank you" is enough. I have to be strong and positive...that's what I keep telling myself whether I believe it or not.
Jimmy is also experiencing fever and chills every night. When he wakes up the sheets are soaked. He is in pain. Thank goodness for the medication. He cries in the early morning hours when Logan and I are asleep. He is still processing the fact that he has cancer. Everything is moving so fast. Less than 2 weeks ago, it was just a hamstring issue, or so he thought. Never did he think this would ever happen to him.
In the afternoon on February 7, the home health care company contacted us. They told us there was a problem getting a pre-authorization from the insurance company "due to a pre-existing condition". WHAT??!!! What does that mean? Jimmy has never had cancer before so what was going on. I contacted the insurance company, Blue Cross Blue Shield, and was informed that there in fact was a problem. They told me that the pre-existing condition was not because of the cancer diagnosis but because we had had a lapse in coverage. We did go without insurance for a period of time before obtaining this policy, however, I didn't understand how this could be happening. The cancer diagnosis was well after the policy went into effect. The policy language regarding this is very broad and non-specific, so it appeared that we should be covered without question. The customer service representative told me that he would look into it further and call me the next day.
On February 8, which would turn out to be a day filled with lots of emotion and turmoil, from beginning to end. First thing in the morning, Blue Cross called. They said that they considered any treatment that Jimmy had for the cancer, would not be covered at all since they considered it to be pre-existing. OMG! I was mad. I was scared. I cried. Jimmy was mad and scared. Would Jimmy be able to get treatment if he essentially had no insurance? We both felt defeated. Now what?
I immediately called the doctor's office. I told Carla, Dr. Hartner's secretary, what was going on. She said she would contact the billing department and see what she could find out. I asked whether or not Jimmy could be denied treatment and she said she didn't know.
Wasn't it already bad enough? We are already terrified of Jimmy having cancer and wondering if it has spread. We are worried about having an income since Jimmy is self-employed and I stay at home. Now this?
Jimmy went to his CT scan and Echo appointments with his Mom while I stayed at home and made phone calls trying to straighten out this insurance mess. I even called a lawyer and got papers to file a claim with the PA Insurance Commission.
I got a call from Laetitia, Dr. Hartner's nurse, assuring me that Jimmy would not be denied treatment. Thank God! She said she was working with the billing department to see how to work this all out. Finally, after many phone calls, it was decided that Jimmy would not get his chemo on a outpatient basis. He would now be admitted to the hospital for the entire week of treatment. He would also not need the port put in since he would be in the hospital and not travelling back and forth every day for treatment. Home care would not be needed either.
Laetitia and I talked for a long time and she assured me that Jimmy would get the care he needed. She said that a hospital social worker would talk to us about billing and try to help us get some sort of assistance for the bills.
Jimmy got the scans done and we were again waiting for news of whether or not the cancer had spread. Laetitia called late in the day...the cancer has NOT spread. Thank you Lord Jesus! Some good news at last!
Today was very emotional and I'm glad its over. We will relax over the weekend and get ready for our family's new normal starting this Monday, February 11.
Subscribe to:
Posts (Atom)