Sunday, June 7, 2015

And So It Begins...

                                Or Here Comes the Trip I Wasn't Expecting to Take.
I had a second opinion appointment with Dr. N, a former professor and researcher in the area of leukemia and lymphoma, who just arrived at Kaiser to start a Leukemia/Lymphoma Center at Oakland. I feel very confident that his explanation and recommendations are the way to go. But (of course) I must mention a few things which put a smile on my face.

The last time I had my height measured, a couple of months ago, the (apparently inept) nurse/assistant (I think they have to convert centimeters into inches) said I was 4'10"!!! Now, I know I'm short (originally at the height of my height I was 5'2") but up until then, I thought I had only lost 2" as my spinal disks have collapsed substantially. But I had a wonderful new nurse who wanted to measure me again and guess what?? I grew 1 1/2" since the last time and now am 4' 11 1/2" - HooooRaaay!!!  Yes, it's the little things that make my day - most of the time. And no, I didn't have my shoes on.

Then Dr. N, after many, many questions and a thorough perusing of my record sat back and said, "Well, I can honestly say your situation is unremarkable."  And my first thought was, "Boy, this medical stuff has it all backward. If you're told your test has come back "positive" that's a bad thing and being told you're "unremarkable" is apparently a good thing." What's with these doctors?

But the best part was being shown the pictures from my PET scan. What an incredible view of one's body, slice by slice. I was shown where all my enlarged lymph nodes are and the fact that they were all a very mild ochre color (good) whereas the point on my arm where they injected the radioactive glucose was like a hot white (expected).

Note the lymph nodes on the right are gone - removed 25 years ago when I was diagnosed with breast cancer.

Also, I could see other organs, all looking fine according to the doc and where the fluid is filling this and that cavity, not so good. But then I saw all the way up to my brain where there was an explosion of hot white!! OY!!! My first thought was, Good grief, do I have brain cancer? But then Dr. Nguyen explained that just showed my brain was actually working. OK, then. Whew!
Note the right side of my brain is definitely larger than the right - not surprising.

Now the regimen begins.  First, I attended a Chemotherapy class where, for one and a half hours I joined a few other patients for a power point presentation given by an oncology RN of what will actually be happening in our bodies and what to expect. 

There were a couple of things I learned that threw me for a loop – not that I might be nauseous or even more fatigued (not sure how this is possible) which I was expecting – but,

1. I’ll have to drink EIGHT – TWELVE glasses of water/liquids a day in order to flush away the toxins which supposedly will be accumulating in my system as the dead cancer cells pile up. I’m already hydration-compromised. If I manage to drink a few glasses a day, that’s a lot and keeps me running to the bathroom more than I’d like. Drinking 8 glasses? I might as well just set myself up in the bathroom with my iPad, iPhone, a couple of books and maybe my knitting and plan to spend the day. And

2. Since the chemo will destroy my immune system, I must be very careful not to be in crowds or around people who are sick. This comes at a very inopportune time, what with my new work being shown in the Be Gallery opening in Berkeley end of June. How can I expect to attend the Grand Opening when I’m expected to shun crowds?

Nesting 111
On the Edge of Infinity

And then there are my tickets to the Oakland A’s games!  I have another 4 games to go to before the end of the season, the next one coming up in a couple of weeks. Well, at least they are outdoors. I could take my handi wipes, try and sit closer to the aisle, and maybe just wear a mask if I need to? 

Tomorrow, June 8, I go in at 9:00 AM (adding insult to injury! - those of you who really know me will understand) to start Rituxan, the first of two different drugs which is given very slowly. I'm scheduled to be there for 6 hours (knitting/reading/napping)! The second drug, Bendamustine, will be administered partially then and the next day in the afternoon and should only take an hour and a half. 

This regimen will be repeated every 28 days for 6 months. The hope is I won't have any dire side effects. If I do, they'll stop, of course. I shouldn't expect to lose my hair but it may be likely that I'll feel nauseous and become MORE fatigued. I renewed my medical marijuana card, purchased a couple of edibles and am ready to handle the side effects with a little natural help!

But here's the kicker:  What Dr. N explained in his professorial way is while this  chemo combination should put me in remission (it will shrink my lymph nodes) for a good long time (SLL can't be cured), there is no guarantee it will totally fix the fluid build up because my lymph system may now be compromised, and this may not heal the places where the fluid is leaking out. Sigh...

Otherwise, I'm still trying to take each day as it comes to me. Really, it's all any one of us can do. I am blessed to have a husband who is totally supportive and here for me. And am also blessed to have so many dear friends who are stepping in and giving us a hand when we need it.

Right now, I'm just trying to conserve what little energy I have, not planning to do too much or anything I know will be exhausting.

Easier said than done.

1 comment:

RebbeSoul said...

Here it is, a few months later. How are you now?