Tuesday, April 25, 2006

Home is where the heart is.

I made it home. They crossed every "t" and dotted every "i" while I anxiously answerered all their questions and they filled out all their discharge forms in double triplicate. In the end I just had to have my catheter removed -- an easy procedure really -- I mean once the sutures were removed. The first time the doc gave the short sharp pull, the sutures hadn't yet been cut. That caused us all a lot of suprise!

You should have seen the look on the nurses face! The doc had me recline my super-duper 'sit around all day and almost start to enjoy the chair' chair to its almost flat/bed like postion. He had his size six and one half cordovan penny loafer positioned on my chest just to the left (closer to himself) for maximum leverage and the three working end of the catheter -- the connection ports neatly wrapped around his perfectly manicured fingers. He said, 'Just take a deep breath and hold it. Then I will slip the end of the catheter out of the vein right next to your heart."

Unfortunately he hadn't expected that the short sharp pull and the accompanying electric bolt of pain through my chest would cause me to sit bolt upright. That movement threw him onto the lap of my nearest neighbor, a 63 year old school teacher who had until that moment been gently snoring while enjoying the marvelous anti-nausea coctail they'd given her half an hour earlier. I think she only briefly awoke, adjusted her postion and nodded back off again.

Luckily the nurse noticed the sutures and found a way to gently encourage the doc to remove them before re-trying the process. The second time, the thing slipped out before I had even fully filled my lungs.

And now here I am back at home. What a morning! I think I will go and take a nap.

Thanks to all of you who sent emails and comments after yesterday's update. I love the encouragement and witty thoughts.

Keep 'em coming!

Monday, April 24, 2006

Maybe tomorrow

My lead oncologist here at the Transplant Center came in a few minutes ago and gave me some real hope. He said that the neupogen shots I have been getting for the past five days in a row should push me over the 1.0 line by tomorrow. That would allow them to release me from the outpatient setting.

He said he was sure I would rather sleep in my own bed and eat from my own refrigerator. I smiled and nodded. He said it was not a promise, but he felt very strongly that my numbers would be where they need to be to get me out of here.

Let's hope! I am pretty run down now. Having had these low counts for over a week has drained a lot of energy out of me. I am sure that getting home will let me rest a lot more peacefully. Oscar and Monika will be there to cheer me up and make me feel loved -- not just cared for as I do here.

Let's hope.

Monday, April 17, 2006

Stuck in this chair waiting for something to happen

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I have reached Day +4

That means that I got my melphalan / chemotherapy on day "-2" and got my own blood stem cells back on Day "0" and now we've reached "+4" Whoop-dee-do.

Basically, I make sure I get my anti-nausea medicine on time and avoid that trouble. Besides that, we are waiting for my old blood cells to die and my new blood cells to 'engraft' (get to work) and start producing new healthy blood cells again. Right now it is a waiting game and a pretty boring one at that.

Since my system is weak -- a common cold could put me in the hospital (Oh; I'm already in one every day!) -- there is not much I am allowed to do. So I spend most of the day sitting in this chair, studying for my Oracle certification, reading odd internet news. And at lucky times, I get mails from some of you and get to write you a note back.

When I get all my medications lined up just right, I get to sleep the sleep of the time peacefully. At about four-thirty, they ship me back to the apartment and I watch a bit of TV, eat dinner, shower and by ten o'clock I am off to bed. The next day it all starts again. So I am just waiting for the cell counts to fall to zero and then rebound up to new levels.

The normal timeline will get me out of here Sunday or Monday. But there are big risks that I can still get caught with a bad fever or other complications. Anything like that would add days.

All my best to you all ...

Monday, April 10, 2006

Me @ circus last week

Pins & Needles

My health has improved tremendously over the past few weeks. I am probably feeling better than before I first began treatment for multiple myeloma last September. I go for a workout nearly every day. After a week of slowly getting limbered up, I now spend 30 minutes on the squash court doing warm-ups and drills, then forty-five minutes on the orbital walker at one hundred twenty strides per minute or faster. I finish with a few light sets of weights on my arms, shoulders and chest. It is a tiring workout and I am very glad to be able to handle it.

I did go for additional consultation to hear from a third party whether continuing in the trial was likely to be beneficial to me. The answers were uniformly and positively, "Yes!" They opened my eyes to the dangers of allogeneic transplant (using cells from a perfectly matched donor). Basically, the donor cells are likely to continue attacking the host body long after the cancer has been conquered. That commonly causes severe and chronic problems – usually in the lungs, the liver, the skin and the gut. Even so, their recommendation was to go FOR the allogeneic, if it were possible. Autologous transplants have never been shown to produce a cure, only allogeneic have done that. They encouraged me to go for the cure.

They also made me more clearly understand that multiple myeloma is a really dangerous cancer and that it kills people. It was a tough message to hear. I left there really shaken and upset. And I waited on pins and needles to get the results of my brothers' tests. Two weeks later I found out that neither test turned out to be a perfect match. And I am glad I did not have to face the decision to continue down that track.

I still have my doubts and fears, but tomorrow (April 11th, 2006) I start my second autologous blood stem cell transplant.

My doubts area based on medical journal articles. My fears (mostly) are based on my experience going through transplant in February.

My tests last week were completely negative for multiple myeloma. I am in remission. That is great news! So why do a second transplant? The journal articles seem to say that there is less likely to be additional benefit to a patient who has had a successful first transplant. The doctors all say that there is a likelihood that some cancerous cells remained after the first chemotherapy. Doing a second cycle increases the chances that nearly all will be killed -- prolonging my remission even further.

When I went in for my first transplant, I was energized and curious to discover the experience of chemotherapy and the transplant. Now that I know what it is and that they plan to repeat it exactly as before, I dread it. The nausea, the lack of energy, the smells and all the repetitive blood, temperature, weight, 'output volume', pulse rate checking, re-checking and then one more time checking ... What I mean is: Now that I know what it is, I do not want to do it again. I really do not.

There are particular moments that are very unpleasant. Writing them out here will only make my thoughts of them worse for me tomorrow, so I am not going to do that right now; maybe later.

The team there at Hackensack University Medical Center will do their best to make sure I come through this as well as last time. I expect that I will be able to endure and the two weeks I will be there will pass by in a flash. Then I can recuperate quickly and re-start my work and regular life again.

I am ready to get this all behind me. I am going to miss Easter at home, so once I get back home and feel up to it, I will cook a special brunch with the menu I would have made -- my Grandmother's traditional Easter dinner: home made polish sausage, baked ham, carrot jello, shrimp salad, hard boiled eggs, rolls with butter and a lamb cake. Yummy!

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