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