It has been difficult to get motivated this week, at least about writing. The chemo infusion started on Monday and followed on Tuesday and Wednesday. Coming home every day was the real blessing. I tolerated the infusions fairly well and had very little side effects. On Tuesday, day two of this new treatment program, I also started taking the oral medication at night. Again, I had little difficulty with this either.
Yesterday was a pretty good day. I was able to keep myself busy with little projects here on the computer and reading news stories, but I began having a lot of heartburn. That has subsided today fortunately.
I am supposed to drink 2 - 3 quarts of fluids every day as well. That is a real challenge, especially when I then have to make 4 - 5 trips to the bathroom during the night. I tried to be a good boy and drink a lot yesterday, but then last night was often interrupted by trips to the bathroom. At least I know that my kidneys are working well. The price I pay for trying to do what I am asked to do. Needless to say, I have cut back a little on fluid intake today.
The interrupted sleep has taken it's toll on me today. I am tired, weak and kind of shaky all over. I am sure this will pass with the rest I am trying to get.
I don't have much else to report. I am very hopeful that this new concoction of drugs will be more effective. If so, it is all worth the lack of sleep and whatever else comes with it. I have four more days of the oral meds and then on the 14th I restart the entire process all over again.
Additional studies (CT and MRI) are anticipated on or about the 3rd of November to determine if this is going to help. I certainly hope so. I have too much to do to be sitting around waiting for all of this to be over with. I'd really like to get back to work and care for MY patients.
Thanks to all for continued prayers and kind thoughts. We are so appreciative and certainly blessed by each of you.
Jim & Patti
Friday, September 26, 2008
Monday, September 15, 2008
Change of Plans
Good afternoon to everyone. We have had an interesting day. Unfortunately, the news isn't very good. The CT scan done this morning hadn't been read officially at the time of my doctor's appointment at 10:30 this morning, but Dr. Chen invited Patti and I into the viewing room to look over the images and to compare them to the ones from July 21st, the last one I had done. What we did see was enlarging lesions in several areas of the lungs and a few more scattered new lesions.
What this means is that the chemotherapy I have been getting has mostly been ineffective and I wasn't admitted again to the hospital (YIPPEE!). We discussed options for treatment at this point and discussed several types of chemotherapy that have been used for sarcoma. Not many of which she favored due to being ineffective as well.
Ultimately, Dr. Chen recommended a cocktail of drugs that she has used for sarcoma with some success pointing out that a previous patient with sarcoma in three body areas did respond well to this regimen. This involves no hospital admission, but does require three days of infusion of two of the drugs and taking an oral drug for a certain number of days during each cycle. This process would be repeated every three weeks and has all the same potential side effects; nausea and vomiting, loss of appetite, kidney problems, increased risk of infection, bleeding, ringing in the ears (I've had that for years anyway), allergic reactions and of course, potential for causing leukemia months to years down the road. Oh yeah, hair loss, but I have that problem solved with my Spiffy Jim's Toupee Kit.
I don't know for sure how many cycles of treatment are going to be given. Just like this last treatment program, after two or three cycles, I will have another CT and or MRI to see what is going on with the sarcoma.
The 2 new IV drugs are; Cisplatin and Doxorubicin Liposoma. The oral drug is Temodar. The oral drug is new and we checked with the pharmacy there at the hospital and discovered that our co-pay for this new oral drug will be well over $600.00 every cycle.
This morning, Patti had shirts ready for us to wear that were matching in color. When we got to the clinic, the medical assistant helping us had on scrubs the same color. Now talk about color coordination, who would have ever thought that we'd all show up in the same color. It was quite amusing.
Once again, I express my sincerest and deepest appreciation to everyone for their continued prayers and well wishes. You keep us both going.
God bless you all.
Jim & Patti
What this means is that the chemotherapy I have been getting has mostly been ineffective and I wasn't admitted again to the hospital (YIPPEE!). We discussed options for treatment at this point and discussed several types of chemotherapy that have been used for sarcoma. Not many of which she favored due to being ineffective as well.
Ultimately, Dr. Chen recommended a cocktail of drugs that she has used for sarcoma with some success pointing out that a previous patient with sarcoma in three body areas did respond well to this regimen. This involves no hospital admission, but does require three days of infusion of two of the drugs and taking an oral drug for a certain number of days during each cycle. This process would be repeated every three weeks and has all the same potential side effects; nausea and vomiting, loss of appetite, kidney problems, increased risk of infection, bleeding, ringing in the ears (I've had that for years anyway), allergic reactions and of course, potential for causing leukemia months to years down the road. Oh yeah, hair loss, but I have that problem solved with my Spiffy Jim's Toupee Kit.
I don't know for sure how many cycles of treatment are going to be given. Just like this last treatment program, after two or three cycles, I will have another CT and or MRI to see what is going on with the sarcoma.
The 2 new IV drugs are; Cisplatin and Doxorubicin Liposoma. The oral drug is Temodar. The oral drug is new and we checked with the pharmacy there at the hospital and discovered that our co-pay for this new oral drug will be well over $600.00 every cycle.
This morning, Patti had shirts ready for us to wear that were matching in color. When we got to the clinic, the medical assistant helping us had on scrubs the same color. Now talk about color coordination, who would have ever thought that we'd all show up in the same color. It was quite amusing.
Once again, I express my sincerest and deepest appreciation to everyone for their continued prayers and well wishes. You keep us both going.
God bless you all.
Jim & Patti
Wednesday, September 10, 2008
Hair alternative
It is a wonderful blessing to have so many people watching over me. I am so blessed by everyone's messages, well wishes and acts of kindness. Thank you to all.
Today, I have to highlight one of my sisters (I have 5). It is totally amazing to have someone in the family with creative talent. When that talent reaches a point of sophistication that I don't even recognize it for what it is, well, it is awesome.
As you all know, I have lost most of my hair. I still have some stubble on my head, but it was so scraggly that I cut off what was remaining in exchange for baldness. There are advantages to all of this as well. I haven't shaved for a month and I haven't had to go to my barber for 6 months. That is a distinct advantage. With close to 90% of my body hair gone, getting showered is like washing a new baby if you catch my drift. No shampoo, just a quick slick body lather and rinse and I am done.
So here is what my little sister did, she sent me a package last week or so. When I opened it and looked I laughed. She had sent me a "Spiffy Jim's Do-It-Yourself Toupee Kit." Yup, a do-it-yourself toupee kit. What a great laugh. I loved it.
Later in the evening, I was showing it to my youngest daughter (17 - high school senior) and telling her what a great gift it was. Then, I suddenly realized that the picture on the packaging looked like me. I turned it over (which I hadn't done before) and suddenly realized that this wasn 't some off the shelf gag gift, she had created the entire thing herself. I was blown away. It even included a personal message from her. Here are some pictures. (What you can't see very well is that there is a huge mound of BLACK hair right next to the Krazy Glue. Fantastic!)
What a wonderful sister. THANKS SUSAN!! God bless you. You have blessed me!! Personally, I like the mohawk look, but the full head of hair on the right is REALLY tempting!
I think that if you click on the picture, it will enlarge so you can see all the AMAZING detail she put into this.
Cancer progress is otherwise unknown for now. On Monday the 15th, I am scheduled for blood work and a chest CT. Later in the morning, I meet with Dr. Chen (oncologist) to discuss results of the CT and treatment. For now, I am scheduled for another admission that same day, for more chemo.
The decision of whether or not to continue with the current treatment program will be based on the CT findings. If the metastatic lesions in my lungs have not progressed or better yet, have diminished in any way, then we will continue the current chemo. If there is significant growth, then we will talk about alternative chemo treatments. The current drugs I am receiving are what are considered the best for the sarcoma I have. If they aren't effective, then the only option is to try newer drugs that have no track record with sarcoma.
We are hoping that the current treatments will be effective. I'll update this again next week after the treatment decisions are made.
God bless you all. Thank you for everything. Jim
Today, I have to highlight one of my sisters (I have 5). It is totally amazing to have someone in the family with creative talent. When that talent reaches a point of sophistication that I don't even recognize it for what it is, well, it is awesome.
As you all know, I have lost most of my hair. I still have some stubble on my head, but it was so scraggly that I cut off what was remaining in exchange for baldness. There are advantages to all of this as well. I haven't shaved for a month and I haven't had to go to my barber for 6 months. That is a distinct advantage. With close to 90% of my body hair gone, getting showered is like washing a new baby if you catch my drift. No shampoo, just a quick slick body lather and rinse and I am done.
So here is what my little sister did, she sent me a package last week or so. When I opened it and looked I laughed. She had sent me a "Spiffy Jim's Do-It-Yourself Toupee Kit." Yup, a do-it-yourself toupee kit. What a great laugh. I loved it.
Later in the evening, I was showing it to my youngest daughter (17 - high school senior) and telling her what a great gift it was. Then, I suddenly realized that the picture on the packaging looked like me. I turned it over (which I hadn't done before) and suddenly realized that this wasn 't some off the shelf gag gift, she had created the entire thing herself. I was blown away. It even included a personal message from her. Here are some pictures. (What you can't see very well is that there is a huge mound of BLACK hair right next to the Krazy Glue. Fantastic!)
What a wonderful sister. THANKS SUSAN!! God bless you. You have blessed me!! Personally, I like the mohawk look, but the full head of hair on the right is REALLY tempting!
I think that if you click on the picture, it will enlarge so you can see all the AMAZING detail she put into this.
Cancer progress is otherwise unknown for now. On Monday the 15th, I am scheduled for blood work and a chest CT. Later in the morning, I meet with Dr. Chen (oncologist) to discuss results of the CT and treatment. For now, I am scheduled for another admission that same day, for more chemo.
The decision of whether or not to continue with the current treatment program will be based on the CT findings. If the metastatic lesions in my lungs have not progressed or better yet, have diminished in any way, then we will continue the current chemo. If there is significant growth, then we will talk about alternative chemo treatments. The current drugs I am receiving are what are considered the best for the sarcoma I have. If they aren't effective, then the only option is to try newer drugs that have no track record with sarcoma.
We are hoping that the current treatments will be effective. I'll update this again next week after the treatment decisions are made.
God bless you all. Thank you for everything. Jim
Thursday, September 4, 2008
Chemo Still Sucks
Once again, I am deeply humbled by the many well wishes, phone calls, e-mails, messages and visits. Thank you so much for checking in on me and on my family. We truly are blessed by each of you.
This last go round of chemo has been in some ways more difficult than any before and in a few ways, a little easier. I entered the hospital on the 25 of August as planned and wasn’t feeling too bad at the time. The first couple of days weren’t too bad. The physicians decided to increase my dose of thiamine (B Vitamin) to help with the effects of the Ifosfamide, one of the cancer drugs. What I have discovered is that the neurotoxic (messes with my brain) effects of Ifosfamide, at least for me, seem to be cumulative. Essentially, every time I am given the drug, the effects seem to be stronger.
Thiamine is a vitamin complex that we used to administer to drunks when I was a paramedic years ago. The idea was to help them with mental function by replacing depleted vitamin B which was often missing. Anyway, my docs at the cancer hospital increased the dose because I had told them I felt it was helpful.
Previously, I had suffered from disturbed sleep and a fog that seemed to settle over me making doing tasks such as reading or writing very difficult. On my previous admission, the fog seemed less bothersome so they decided to increase the dose during this last admission. It did help with the fog, but the nighttime problems continued to be a big issue for me.
The very first time I had chemo, on the second night in the hospital, I experienced visual flashes all night long. It was like viewing a slide show. Vivid images were flashing by every second, all night long. I was able to get through the night, but it was difficult. I asked for some Benadryl the next night and that seemed to help although not eliminate the problem. So, I took Benadryl every night for the rest of that stay.
On my next admission, I had more of the same and once again Benadryl seemed to help. They did send some lorazepam (a tranquilizer) home with me that time and I tried it once only to find that it was much less effective than the Benadryl. The brain fog was quite evident during and after those first two chemo sessions.
So on the 4th of August admission, we started the thiamine and that really seemed to help the fog brain during the day. Nighttime was another issue. I have these vivid dreams. They often start with the flashing images and then I get fixated on some topic that plays over and over and over all night long. You have to remember that because of all the fluids being pumped into me, I have to get up and go to the bathroom quite often as well. Usually, when someone wakes from a bad dream, they can go back to sleep and it stops or at least changes. Not for me. As soon as I am back asleep, it starts all over again and is extremely vivid.
During this last admission, it got really bad. It started on Tuesday night with a repetitive dream about how to say “thank you” in different languages. Now the only languages I actually speak are English, Spanish and Pig Latin. My mind was so focused on this that I was really stressing about how to say “thanks” in all kinds of languages. I’d wake up, go to the bathroom, go back to bed and again, over and over and over again, I’d be rehearsing “thank you” in all kinds of languages. I don’t even know if any of them were real, but on it went, all night, until I finally got up at 6:00 a.m. and read the news on the internet.
The next night (Wednesday) was worse. I kept seeing these images of blankness. Yes, a square blob of brown that kept being stamped like a rubber stamp over my field of vision. It too went on all night.
Thursday was the killer. I kept losing track of where I was. I’d get up, look around the room, tell myself that I was in the cancer hospital, go to the bathroom and then try to go back to sleep only to lose track of where I was again. Over and over, I’d wake with a start, look around, feel comfortable with my IV pole and fluids, the window outside and the bathroom and then lie down to go back to sleep only to startle awake again not knowing were I was. When the nursing staff came in at 4:00 a.m. for their customary check of vital signs, I mentioned to the nurse that I was having some difficulty sleeping despite the 50mg of Benadryl I had taken hours before. When she came back to check on me at 6:00 a.m., I was a wreck.
By 6:00 a.m. I had so totally lost my sense of reality, I wasn’t sure where I was. The nurse just happened to come and check on me (out of the goodness of her heart I am sure). I was so overwhelmed that I had to ask her repeatedly if I was still in the hospital and if I was who I thought I was. I was in tears, staring at the ceiling. The closest I think I have ever come to a total all out panic attack.
The nurse stayed with me for about 20 minutes or at least until my brain started to process information correctly. It was very a disconcerting experience. Later in the morning when my wife arrived and I shared this experience with her, she looked at me very lovingly and said, “Yes, I know.” She has suffered from anxiety, panic and depression for years. This time, I experienced her world. I didn’t do very well.
Typically, all of this stuff settles down within a few days of leaving the hospital. The Ifosfamide is given for about three hours on Monday, Tuesday, Wednesday and Thursday of the admission. I go home on Friday and today is now Thursday again. Last night was the first that I didn’t take Benadryl to get some sleep. The brain fog is mostly gone, but still lingers. I did wake last night for a bathroom trip at about 3:30 a.m. and didn’t fall back asleep until 5:00 a.m. this morning. Although very unusual for me, it was better than the dreams.
In eleven days, I have my next appointment with my oncologist. I’ll have blood work and a chest CT that morning and we will discuss the results. If this current treatment has stopped the growth or better yet reduced the number of metastatic lesions in my lungs, we will probably continue with another admission that day. If the lesions have continued to grow, we will have to come up with another plan.
One last issue I’d like to mention as a point of interest. On a previous blog posting, I included a picture of my fat feet due to fluid retention. This last admission was equally challenging on the fluid retention topic. My feet, hands and face all puffed up. The physician that day checked my numbers and told me that I was 10 liters of fluid behind on output versus what I had taken in. That was about 22 pounds of extra fluid in my system. No wonder I had fat feet. They reduced some of the fluids running in and it was all gone by Sunday. I felt much better.
God bless you all. Thank you for your prayers. The battle goes on.
Jim
This last go round of chemo has been in some ways more difficult than any before and in a few ways, a little easier. I entered the hospital on the 25 of August as planned and wasn’t feeling too bad at the time. The first couple of days weren’t too bad. The physicians decided to increase my dose of thiamine (B Vitamin) to help with the effects of the Ifosfamide, one of the cancer drugs. What I have discovered is that the neurotoxic (messes with my brain) effects of Ifosfamide, at least for me, seem to be cumulative. Essentially, every time I am given the drug, the effects seem to be stronger.
Thiamine is a vitamin complex that we used to administer to drunks when I was a paramedic years ago. The idea was to help them with mental function by replacing depleted vitamin B which was often missing. Anyway, my docs at the cancer hospital increased the dose because I had told them I felt it was helpful.
Previously, I had suffered from disturbed sleep and a fog that seemed to settle over me making doing tasks such as reading or writing very difficult. On my previous admission, the fog seemed less bothersome so they decided to increase the dose during this last admission. It did help with the fog, but the nighttime problems continued to be a big issue for me.
The very first time I had chemo, on the second night in the hospital, I experienced visual flashes all night long. It was like viewing a slide show. Vivid images were flashing by every second, all night long. I was able to get through the night, but it was difficult. I asked for some Benadryl the next night and that seemed to help although not eliminate the problem. So, I took Benadryl every night for the rest of that stay.
On my next admission, I had more of the same and once again Benadryl seemed to help. They did send some lorazepam (a tranquilizer) home with me that time and I tried it once only to find that it was much less effective than the Benadryl. The brain fog was quite evident during and after those first two chemo sessions.
So on the 4th of August admission, we started the thiamine and that really seemed to help the fog brain during the day. Nighttime was another issue. I have these vivid dreams. They often start with the flashing images and then I get fixated on some topic that plays over and over and over all night long. You have to remember that because of all the fluids being pumped into me, I have to get up and go to the bathroom quite often as well. Usually, when someone wakes from a bad dream, they can go back to sleep and it stops or at least changes. Not for me. As soon as I am back asleep, it starts all over again and is extremely vivid.
During this last admission, it got really bad. It started on Tuesday night with a repetitive dream about how to say “thank you” in different languages. Now the only languages I actually speak are English, Spanish and Pig Latin. My mind was so focused on this that I was really stressing about how to say “thanks” in all kinds of languages. I’d wake up, go to the bathroom, go back to bed and again, over and over and over again, I’d be rehearsing “thank you” in all kinds of languages. I don’t even know if any of them were real, but on it went, all night, until I finally got up at 6:00 a.m. and read the news on the internet.
The next night (Wednesday) was worse. I kept seeing these images of blankness. Yes, a square blob of brown that kept being stamped like a rubber stamp over my field of vision. It too went on all night.
Thursday was the killer. I kept losing track of where I was. I’d get up, look around the room, tell myself that I was in the cancer hospital, go to the bathroom and then try to go back to sleep only to lose track of where I was again. Over and over, I’d wake with a start, look around, feel comfortable with my IV pole and fluids, the window outside and the bathroom and then lie down to go back to sleep only to startle awake again not knowing were I was. When the nursing staff came in at 4:00 a.m. for their customary check of vital signs, I mentioned to the nurse that I was having some difficulty sleeping despite the 50mg of Benadryl I had taken hours before. When she came back to check on me at 6:00 a.m., I was a wreck.
By 6:00 a.m. I had so totally lost my sense of reality, I wasn’t sure where I was. The nurse just happened to come and check on me (out of the goodness of her heart I am sure). I was so overwhelmed that I had to ask her repeatedly if I was still in the hospital and if I was who I thought I was. I was in tears, staring at the ceiling. The closest I think I have ever come to a total all out panic attack.
The nurse stayed with me for about 20 minutes or at least until my brain started to process information correctly. It was very a disconcerting experience. Later in the morning when my wife arrived and I shared this experience with her, she looked at me very lovingly and said, “Yes, I know.” She has suffered from anxiety, panic and depression for years. This time, I experienced her world. I didn’t do very well.
Typically, all of this stuff settles down within a few days of leaving the hospital. The Ifosfamide is given for about three hours on Monday, Tuesday, Wednesday and Thursday of the admission. I go home on Friday and today is now Thursday again. Last night was the first that I didn’t take Benadryl to get some sleep. The brain fog is mostly gone, but still lingers. I did wake last night for a bathroom trip at about 3:30 a.m. and didn’t fall back asleep until 5:00 a.m. this morning. Although very unusual for me, it was better than the dreams.
In eleven days, I have my next appointment with my oncologist. I’ll have blood work and a chest CT that morning and we will discuss the results. If this current treatment has stopped the growth or better yet reduced the number of metastatic lesions in my lungs, we will probably continue with another admission that day. If the lesions have continued to grow, we will have to come up with another plan.
One last issue I’d like to mention as a point of interest. On a previous blog posting, I included a picture of my fat feet due to fluid retention. This last admission was equally challenging on the fluid retention topic. My feet, hands and face all puffed up. The physician that day checked my numbers and told me that I was 10 liters of fluid behind on output versus what I had taken in. That was about 22 pounds of extra fluid in my system. No wonder I had fat feet. They reduced some of the fluids running in and it was all gone by Sunday. I felt much better.
God bless you all. Thank you for your prayers. The battle goes on.
Jim
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