Wednesday, July 29, 2009

Hello left hand? Meet the right hand. You guys should talk more often!!!

So there was no surgery this morning.

I got up painfully early and went in to make sure my platelets were still in good shape. While there, I told them go ahead and run one last set of labs. Why not! Blood for everybody, on the house! :)

I left the infusion center and went over to the outpatient surgery center on the 4th floor of the hospital where I've had all the bone marrows done before. They couldn't find us in their ledger, and referred us to a different surgery clinic around the corner where kidney transplants are done. Hmm.

Anyhow, this was the right place. They had me on the ledger there. We waited, and I was called, and went back.

That's when the RN said "just so you know, you're not having surgery today."

Turns out I was just there to meet with the doctor. This was mildly irritating (to say the least) since we have carefully scheduled our remaining few days here. I went to the trouble of having a platelet infusion that wasn't necessary, for one thing! My blood pressure, which was 117 over 82 in the clinic, suddenly was 140 over 90. Grrrrr!!!!

We then met with the doctor, a fairly young guy who was nice enough. Except he started off by telling me how much higher the risk of infection was with Myeloma patients, and then went through the list of all the things that could go wrong with a portacath. Do I want to hear that carrying a golf bag could give me a pulmonary embolism? No, I do not.

It was a pretty depressing conversation, to tell you the truth. They have to place this thing deep under the skin and cut through muscle, etc. It's closer to a hernia operation than a line placement, actually. I left pretty ambivalent about whether or not to do it after all. I figured it might be easier to do nothing, just have the one line removed, and then maybe in a few weeks try maintenance and see how bad it is trying to let them just do the IVs.

As I was ruminating on this, Kristen, the APN from the infusion center, called. My CRP has come down, which is good. My uric acid is coming down thanks to the Allopurinol tablets that I was prescribed. Also good. My platelets were 81 post infusion yesterday and 84 this morning, so they held and increased a bit. I am sure I will be over 75 tomorrow, so that should be fine.

The M-spike, despite the smaller hump size in the graphs I posted last night, remains at trace levels. I'm not concerned.

Kristen did say that she has never encountered anybody with a portacath who regretted having it placed. That helped out a bit. I'm going to have dinner with BB and BJ again (BB's wife is out of town or she would be joining us) as a farewell meal, and I'll see what he thinks about the likelihood of complications and whether or not I should have this done here versus just having the line pulled and then dealing with the portacath at some point in the future.

As it stand now, I have surgery tomorrow morning at 9AM, and then a discharge appointment with BB at 3PM. I will go into the infusion center at 7AM -- might as well get one more lab out of me for kicks, plus they will run cancer markers on it and it's the last chance to see the M-spike before we leave town.

I'll post an update.

I had a long conversation today with a gentleman from Los Angeles whose wife, age 61, has been through Myeloma hell for about a year. She began treatment under Dr. JB -- the guy who doesn't do any transplants -- in LA and it didn't work out. She got very ill, and then was looking into Dr. SF at City of Hope but had to be hospitalized. She managed to recover against all odds, and part of the protocol was a single transplant by Dr. RV, another one of the folks that I was going to consult with back in Los Angeles long ago. The single transplant didn't take either, so this couple finds themselves here. Her husband actually just took out a lease on the condo unit on the floor directly beneath us.

At any rate, I had a great conversation with this gentleman -- he and his wife have the exact right attitude to bring to this fight. It feels good to be helping others -- as I said, I am fortunate that I have fared as well as I have, such that I can start turning some of my attention from managing my own disease to helping others manage theirs.

The apartment has been cleaned out...our car is loaded onto a truck and being sent back to California...and we fly back in Friday. As I said goodbye to the friends we have made among the care providers and fellow patients, I can't help but think back to high school graduation -- it's that same type of feeling. Except, frankly, high school was worse in some ways than cancer. :)

More news tomorrow, I am sure. And I should sleep well tonight as I'm dead on my feet. :)


  1. How ironic! You are leaving LR tomorrow, and we just got the news that Jon has reached CR!!!!! It has been 28 months since diagnosis and he made it!!!!! Our doctor at University of Colorado is awesome and we are so happy! You will be joining the ranks with us very soon. Safe travels!

  2. Nick- I am so glad that you are doing so well. I have a question- What do you mean when you say that the womens sct "didnt take". I heard that phrase some where else recently and did not understand what it means. Does it mean that the person did not achieve cr or does it mean that the mm was back very quickly- like less than 18 months? Thanks again for sharing your experiences!

  3. Linda -

    My understanding -- because I didn't want to be overly probative on the details with this man and his wife -- is that the MM came back shortly after the transplant. Poor word choice on my part: I didn't mean to imply that the body rejected the transplanted immune system, which can happen (particularly with an allogeneic transplant). I should have said that the transplant was unsuccessful in achieving a lasting remission. It may be they never came close to CR, or they might have achieved it and then lost it. I any case, one is better off never getting it than getting it and losing it, as I know from BB's data as reported her earier.

    Thanks for the questions and the opportunity to elaborate!