New Phase

I'm on the brink of going into a new phase here. I'm nervous about it, but also anxious for it to start because of the symptoms I'm having right now. I'm on a low dose Duragesic patch, so the pain is controlled, but I'm getting fevers (102.5 last night) and sweats (not surprising with the fevers, but drenching and dramatic, nonetheless. I have a couple of days left on Cipro and will probably be going back on Zithromax today for another 5 days. (antibiotics) I've also got pleural effusions (fluid around lungs) although the pneumonia seems to be clearing up.

I called the doc about the fever last night. Since my doc was on call, I got to stay home and ride it out because he's seen me do this before, and he just had my blood counts and and exam done yesterday. 2 Tylenol and by 4 am (past the duration of the Tylenol dose) my temp was 97.6. Unfortunately, it's creeping back up this morning. 100.4 at 9:30am.

That can be a problem on the weekends. If one of the other docs is on call, I'm likely to be admitted to the hospital with a fever, when I wouldn't be if my own doc was on call. Thank God last night was a weeknight. The docs all take their own calls M-Th.

The new phase is starting out looking like this:
VP-16 pills, 50 mg daily for 14-21 days (likely 14 for me the way my counts drop) with prednisone the first 5 days only
1-2 weeks off (again 2 weeks is more likely for me)
Daily Neupogen shots when needed for WBC (although if it does turn out to be 14 days off on average, I can take Neulasta)
Platelet transfusions when needed
Weekly Procrit shots for HgB, and blood transfusions when needed

The good part is that it is fewer IVs this way. Maybe the bruises on my arms will have a chance to fade. The bad part is if I can't take Neulasta, I have to go in everyday for my Neupogen shot. Ironic, isn't it? I take pills, so I won't have to go in for the chemo, but I need shots so I have to go in for the shots, because Medicare won't pay for them at home.

Of course, all my treatment plans are written in pencil with a BIG eraser handy. Usually the treatment plan changes right after I get a really expensive prescription filled, which I'll no longer be able to use. :-)

In preparation for the new treatment, which for the first time in my 11 year saga will make me lose my hair, David took me hat shopping. I got a denim baseball cap I like and a couple of big bandannas (navy and purple so far). I'll have to have Steve show me how to tie them right. He's an expert.

Most of the other hats were too gaggy. It was somewhat traumatic being in an Frummy (Jewish Orthodox) hat store (not that many women wear hats anymore except the extremely religious and chemo patients!) I'm still on a quest for another hat or two. The requirements are that they have to be preferably cotton, soft and not scratchy, since I won't have any hair protecting my head. And not too cutesy looking. Suggestions are welcome.

One of the people on the lymphoma email list already sent me a website for welder's hats. They meet the criteria for cotton and soft, but some of the are pretty wild. There must be a lot of female welders. I can't imagine guys wearing the flowered or polka dot ones... Here's the url if you want to check out the welder's hats:
http://www.kromercap.com/catalog.htm

Everyone I know who got a wig, hated it. They wore it once or twice and it was way too hot and uncomfortable, especially in the summer, so they put it in their closet and never wore it again. I don't think I'm much of a wig type anyway. You all will just have to get used to seeing me in goofy hats and doo -rags.

Very Tough Time

Having to postpone chemo because of the pneumonia (which I hardly even feel sick from) has been a tough call. I've had pain over the past couple of weeks, but it moved to a whole new level yesterday, and caught me by surprise actually at the Cancer Care Center while I was there for a platelet transfusion. (Platelet count was 5...)

I'm now on a Duragesic patch which has the pain meds absorbed through my skin instead of tearing up my stomach. Of course, the Cipro antibiotic for pneumonia has been doing a good job of stomach demolition too. The patch is finally kicking in enough that I'm feeling more like myself and less like a 15th century martyr, and it's letting me get lots of sleep.

The next hurdle is finding enough space in my stomach to eat more normally. That may take awhile til I'm back in treatment and the nodes shrink some. As my doc put it today, I'm a small person, so there's not a whole lot of room in there. I'm getting used to food again after a couple of days off. David brought me a great smoothie full of nutritional goodies like protein as well as the usual ingredients. Even smoothies take up space, though. I had to tell him to make me a half smoothie. But it sure tasted good.

I get my chest x-ray redone tomorrow and then see the doc. Hopefully the pneumonia will be resolving enough that we can start the chemo soon--once we decide what the chemo mix will actually be. Maybe the end of this week or, more likely, next week.