Tuesday, February 07, 2006

day+5

As I type this, I pause every now and then to watch Wolf Blitzer's "Situation Room" on CNN. He just examined the highlights from the funeral of Coretta Scott King today and the ongoing controversy surrounding the cartoons of the Prophet Muhammad.

I was receiving platelets up until a few minutes ago, but then because of low blood pressure the nurse stopped the platelet infusion in order to consult with the doctor about what to do next. She placed me back on saline hydration for the time being.

So much has happened during the past two days here in room 240. There's so much that I want to share. I just hope I didn't forget some of it and that I have time required to type about it, which is why I am of the belief that it's best I compose my posts in the morning before the drama of the day unfolds. It just so happens that yesterday morning I decided to wait until the evening to update my blog, but the evening turned out to be horrible for me and I never had the opportunity to work on my blog as I had hoped. Today I had a constant stream of visitors and phone calls not to mention the now ubiquitous IV team visits which together consumed the meat of my day, so I find myself rushing to update what I can now.

Yesterday, day+4, started off rather well eventhough I had had a bout of fevers the previous night,which resulted in me being placed on antibiotics. For the most part of the day I sat in my favorite loveseat reading the newspapers and talking to a few visitors. At about a little after noon, I received a call from Laura, a most upbeat and charming person, who is into her seventh month post-transplant for Non-Hodgkin's Disease. We made contact through a mutual friend, who thought it would be great for us to link-up and it sure was. Laura, who's 24, and I both agree that we fall into a unique category of cancer patients - 18 to 30 and transplant recipients - for whom it's not very easy to meet and talk to others who can share and understand the experiences that result from a treatment like this at our ages. Nick, for example, my former roommate who until this afternoon stayed (he was given the much coveted OK and discharged today) in a room just a few doors down from me has a different perspective to this than Laura or I do. At about 67, it's different for him than for us. I recall one conversation we had in which we - men being men - talked briefly about the effect of the chemotherapy on our sexuality. He told me confidently that in the past he had never really experienced problems in that department, but that he had noticed changes as a result from the chemo. My simple response was that I was warned beforehand of the sexual risks associated with the high-dose chemotherapy, the greatest of them being infertility. Although not guaranteed, there's a high chance that this could happen and therefore, it was advised that I bank sperm before the treatments began which is exactly what I did a several months ago. Nick, like others who have families or a partner, don't face this issue and the surrounding problems that come with it, for example, but it's different for those like Laura and me. So, just as it was most refreshing to meet and talk to Amy last week, it was a delight to listen to Laura's experience and to take whatever advice or warnings she could offer to me. And to my complete surprise today, I received a package from her which included two books to inspire me in the days and months to come: Every Second Counts and It's Not about the Bike: My Journey Back to Life by Lance Armstrong. Wasn't that most sweet of her? Thanks Laura. Although at moment I haven't been too keen to read anything other than the newspaper because of the headaches and fatigue, I'll be sure to do so when I feel better.

At around 4:30 yesterday afternoon, my head started to become bothersome again at the same time that I began to feel more fatigued. So I got up from the loveseat and moved into the bed, where I remained the rest of the day. My headache worsened and I was so tired that I had absolutely no desire to leave my bed except to go to the bathroom if needed, but generally I was able to urinate in the portable urinals at my bedside. The chills that I had experienced throughout most of the day persisted. For most of the day, I wasn't sure if I was cold due to the temperature in my room or something else. In retrospect, I now know that the reason why I felt the strong need to have the knitted blankets pulled over myself while I sat in the loveseat and lay in the bed, was because of a fever that peaked over 101 at one point. So, with all this going on my opportunity to update my blog for the day was missed for good and I'm sure that as I'm writing this now I'm missing a few observations would have been great to record but all I can type is that which I remember.

I ate a very small lunch that day, but had absolutely no appetite for dinner. From maybe 5:30 to about 8:00, I was in my bed huddled under several blankets with the lights off. I just lay there trying to rest myself free from any activity or stimulation that would make my brain work unnecessarily. It's my brain and my heart, which I have thought most about during the recent days of fever and excitement. I know my brain is telling me that I need to chill and cut the talking and other forms of stimulation to a bare minimum, because it has been wacked around pretty hard these past few days and sure enough, the headaches grow and intensify soon after I have talked too long or given something too much attention. At around 8:00pm, Andrea, came in to begin her night shift, which means starting me off with the usuals: the neupogen and acyclovir. At about 8:40, Clare stopped by to check up on me and then maybe four minutes later, Dr. Javier (I had met him for the very first time that morning) along with Andrea entered my room and told me that the blood cultures from both double-heads of the PICC line proved positive for a bacterial infection and since I was suffering from a fever which came on quickly during the evening, it was imperative to remove it. So that's what he did. With some unexpected difficulty, he was able to pull out the PICC line and that was that. Although the two ultrasound exams proved negative for a clot, he said the unexpected difficulty he found pulling the line out could be from the fibers of the line which may have collasced in some way with the wall of the vein, thus, causing the strain when he pulled. To be honest, that could be the answer but I'm not really sure although it sounds like a plausible one. The important thing is that it was removed. In the PICC's abscence, two peripheral lines were placed in my right arm last night from which IV fluid, such as platelets, or antibiotics can be given. It is, however, very sensitive to my arm's movement so if my arm's not in the proper position for the fluid to flow smoothly, it will beep in a minute. Normally, a simple repositioning of my arm does the trick. This can be annoying sometimes, especially when you're asleep with the lights off, and it's for this and other reasons that the PICC is preferred.

I was given Tylenol for the awful headache that I was sufferingfrom, eventhough I continued to sweat profusely throughout a great deal of the night. Wow, was my pillow soaked and it's very uncomfortable to place your head on a damp, wet pillow and then, try to sleep. I found myself alternating from one pillow side to another in the hope of resting my head on a dry corner somewhere, which wasn't always successful.

By this morning, the fever had subsided in addition to the sweating. I felt considerably better than I had done during the night and made an effort to get up from my bed and to sit in and enjoy breakfast in my favorite loveseat, from where I watched the morning news and the vessels navigate the East River from my window. The BMT team came in and made it known that they were aware of what happened last night but that was common and expected considering my low counts. Despite my obvious frustration with the headaches and fevers, the course of my treatment was on schedule I was told.

My mom came by around 10 and during her stay, she helped wash me up a bit during which time I noticed what appeared to be a rash on the upper most area of my left thigh near my groin. Scott told me to look out for a rash and until now, I hadn't seen anything. That was my first concern. As I examined my bare chest in the bathroom mirror, I noticed several black spots around my mid-torso as well as some areas on my arms. I didn't know what these were so I made a point to tell Scott or Bita about this new discovery too. Finally, it stung when I had urinated earlier in the morning although there was no stinging sensation when I urinated again after breakfast. I don't remember when exactly but the next time I urinated, which was to produce a sample for analysis, blood dropped surpringly with my urine into the toilet with a sharp nasty sting. This was the one thing that I knew could very well happen, which I feared, but it happened nonetheless. Drops and drops of blood came. I stood there trying to stop the bleeding with toilet tissue as I cursed and laughed at myself. It was most surreal. Fortunately, I managed to get a clean urine sample with no blood, which will be analysed for an infection. Once I had cleaned up myself, I called the nurse who came shortly thereafter and she informed the medical team of what happened.

Rashes, I was told, are common and can be dealt with anti-fungal powder which I received. The black dots on my chest and arms are due to inflammation of the hair follicle, which is caused by the chemotherapy. This condition is called folliculitis and it can be treated with a cream. This, however, is my least worrisome concern at the moment. The blood in the urine has taken its seat now alongside with fevers and headaches as the triumverate of transplant nasties. (Nausea is a close fourth). There are three causes for the blood in my urine: first, a simple urinary tract infection which though possible they say is very unlikely. In fact, they'd be very surprised if this turns out to be the source of the blood. Second, a dormant virus which has awoken due to the low white blood cells and started trouble. This too can be treated with antibiotics. Third, the cytoxsin chemo drug that I received is known to irritate the bladder, thus causing it to shed blood which enters the urinary tract. Normally, the bleeding would be kept in check, however, by the platelets, but because their numbers are so low (mine were only 12 today), the blood flows uninhibited into the urinary tract. I fear urinating now not so much because of the blood but because of the pain that comes with it. The fact that I'm being hydrated via IV to help raise my blood pressure which has been low for the past few days means that I'll need to urinate often and I don't like the prospect of that now, especially at night but I must do it and just hope I don't experience that sharp sting too many times.

Despite these new challenges during the past few days, I have maintained perspective and my humor. That's most important.

My counts for today are by the way: WBC: unknown at moment; Hgb: 8.1; platelets: 12. The doctors told me that my counts won't begin to rise in any significant amount until as early as day+7 or possibly as late as day +12.

If there are any typos or other mistakes, please forgive me. I composed this post tired and with less time than desired.

6 Comments:

Comment Anonymous Anonymous said...

Duane you're a strong young man, to try and stay focused, and to maintain some humor too. Although its good to try and push yourself if your heart, mind, and body are telling you it needs to rest maybe you should listen to it. You have so many wonderful people in your life that I'm sure everyone will understand that for right now you need more resting time. You continue to inspire me.

Muriel

8:39 AM  
Comment Blogger xrunner59 said...

Duane,
I have been following your process. Thanks for sharing the experience my daughter will soon be experiencing the same transplant process. You are truly a prizefighter.
Art

9:41 AM  
Comment Anonymous Anonymous said...

Duane,

You really are a champion blogger. Your writings have been and continue to be an invaluable source of both information and personal insights for me. I read your blog not only for your comprehensive coverage of the procedure itself but for your humility, candor and poise.
Your efforts are much appreciated. Many thanks Duane.

Amy (the MN one)

11:54 AM  
Comment Blogger Duane said...

To Art (xrunner59),
It pleases me that my writings have been of some help to you and your daughter. It really makes me happy knowing that my blog has had a use. Indeed, the transplant is not an easy experience but I wish your daughter and you the absolute best as you go through this process. Tell her to stay strong. She'll be well.

My very best,
Duane

5:03 PM  
Comment Blogger Duane said...

Thanks, Muriel. Thanks for the advice. You're right. I'm not only listening to my body but doing what it needs. Thanks again. You're wonderful.

Love,
Duane

5:04 PM  
Comment Blogger Duane said...

Thanks, Amy. You post the most encouraging comments and as a result, I know that my efforts have been of some benefit to others.

Thanks so much.
Duane

5:06 PM  

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