Glitches and Grace

Back in the VA hospital for round two of the chemo which started on July 5th. This time on Hyper CVAD without the vincristine. Guess that makes it Hyper CAD.  If things go as well this time, I'll be out of here just in time to catch a plane to Denver for a weeks visit with family and then on the the support group leaders conference in Dallas. Then I think the plan is to return to UCSF for the SCT in August.  Nothing new here bout my schedule...just as crazy as usual.

I've had few computer frustrations, and it's really put me off track with the blogging. I really wish I knew a lot more about computers. .I have a new laptop and a plug-in that was supposed to provide internet access while in the hospital.  Well, due to a couple factors, I've had no internet connection.  First, the room that I was in must have been an old X-ray room or something....talk about zombie zone...No cell service, no internet, and often the nursing staff had trouble with their computers....meantime, I'm trying to keep in touch, and hoping people don't just think I'm so wrapped up in my own drama that I've blown them off.

The wonderful staff here at the VA hospital took pity on me, and did a little musical bed shuffling to get me into a room where I am connected again. So....

To bring you all up to speed, the first round of chemo went extremely well.  I had very few of the side effects that are common.  No nausea, mouth sores, lack of energy, and my cells rebounded very quickly.  The therapy itself was very effective and the doctors were quite excited.  My freelite dropped from 4800 to 400, and the bone marrow biopsy show a the plasma cells to be down to 10%  from just the one round. The other good news is that my kidney creatine has returned to it's base line; something the renal doctors did not expect to happen.  It's all good.

On the other hand, there have been changes to adjust to.  I did experience hair loss, something I was looking forward to (in hopes I would ultimately wind up with a lush mane of hair) but it didn't fall out all over, and I still have to shave my legs.....sigh....got to keep the eyelashes though.  Anyway, I shaved my head and got a wig.  I was so glad to not have hair during the 100 degree temperatures we experienced over the Fourth of July weekend.  I thought about just spritzing the top of my head with water. 

Another bit of note was that after going home between the two sessions I found myself dealing with some emotions that were somewhat alien to me.
Most people who know me would consider me a fairly upbeat and positive person.  I rarely have an occasion that I really remember being down for any significant period.  Much to my surprise and dismay, I experienced as real case of of the doldrums while on the hiatus between chemo rounds.  I found that I felt like there was a little less of me...that I could not feel things with the same intensity physically that I had, and felt as if I was wrapped in cotton batting. There was a deadening in my physical sensations, and it seemed also as if the things I was seeing were more dim, as if the light were not quite as bright.  To someone who is used to living full out, it was very disconcerting, to say the least.  I spend a couple days doing nothing but sleeping and wallowing.  The issue was the fear that the chemo had taken away part of me, and I would lose even more of myself on the next round which I knew was coming up.  For me, it was a question of quality of life.  Anyway, I admitted to a family members I was feeling depressed, and just allowed myself a good cry.
I'm not mentioning this to say "poor little me" but to let anyone going through the chemo that there is a psychological aspect that isn't always talked about.  It certainly caught me by surprise.

However, I'm glad to report that things are pretty much back to normal. The only real difference I've noticed is the neuropathy in my hands.  The constant tingling sensation is a real annoyance,  but since I'm used to doing so much with my hands, I would rather that than the deadened type.  I anticipate in talking with some others with this type of neuropathy that at some point the mind will be able to treat it like background noise.

 I'll take feeling too much over feeling too little any day!

Saga of a Stem Cell Transplant-How I got here

For those of you who don't know, I was diagnosed in 2003 with Multiple Myeloma. I've kept pretty busy and learned a lot along the way.  Back when I was diagnosed, the Stem Cell Transplant was about the only choice for treatment,  thalidomide was radical and brand-new, and the life expectancy was 23 months.  However, I noted that the graph of mortality did have a faint line that extended out just above the zero.  I told the doctor then....I'm on THAT line.  They told me 23 months- I promised my grand-kids to be around til they were grown.  Eight years later, here I am, still going against the odds and planning to live to 80. The new upgraded life expectancy for a myeloma patient is nearing the 10 year mark.

I elected to not have the SCT at that time, trying the new Thalidomide which worked exceeding well for me, for about 18 months, then, on to several newer drugs that kept being released in the meantime.  These all worked well until January, when everything I had available was in use and my numbers kept rising.  The critical point came in June when my GFR hit 10 with a creatnine of 4.7.  (For those who don't know- when your GFR (kidney function) is below 16 you are generally in renal failure and at 10, on dialysis.)  Oddly enough, I'm not, and it has the renal docs checking me every day and scratching their heads.

Due to the condition of the kidneys and the lack of viable treatment options, I was admitted to the VA Hospital in San Francisco on June 7th with the plan of several rounds of chemo to suppress the myeloma enough to get a collection and then on to a SCT.  This will buy a little more time for more new drugs to become available and so on.

Many of my support group members have questions about the whole process, what goes on, what happens, so I thought I'd take the time to chronicle my experiences and have it be of some benefit.  I'll try not to get too technical, and will to explain any new terms, so feel free to comment, question, or encourage!

You know what I say when they say it can't be done....just watch me!   Something perverse in my nature just loves to tackle the word Impossible!

Note for today....Doing well, feeling good, thriving.....and yes even having fun  Live from the  SFVA Hospital,