Revlamid, Steroids, Late Nights and New Toys

I started my second round of Revlimid today, or rather on Friday. The Docs have mentioned several more rounds of it, and I'm not sure what they mean, I hope they don't mean what I'm afraid they mean, pushing the transplant into late this year. I really want to get this done, for my sake, yes, but also for my donor sister. I don't want her to miss work if she does not have to. Ah well, all we can do is wait. Along with the Revlimid come the steroids, so little sleep tonight. That's why I'm posting this at nearly 2:00 AM EDT. I'm up late but I do have a new toy to play with. My wife and I bought the reduced price iPhone today, uh, Friday. No I didn't need it, and in different circumstances I probably would not have bought it. Not to get morbid, I simply decided that I wasn't to going to pass on any new experiences. If I have a chance to go somewhere I either want to see again or have not seen, I'm going. If there are friends I can see and enjoy time with, I will. If there is a meal I really want to try, I will. If there's something I want and it is reasonably possible, I will get it. I really can't be sure if I will get the chance again, so if God blesses me with the opportunity, I'm taking it. Selfish, maybe a little, but trust me I won't get silly, at least not to silly.
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us
Deacon John
Feast of St. Cyril of Alexandria
June 27, 2009 (barely)

Closing in on the Transplant

We are definitely getting closer to the bone marrow transplant. Friday I had two of the tests the insurance company requires to make sure I won’t drop dead in the middle of the procedure. Despite everything my body has been through my organs still seem to be in pretty good shape. So, barring any odd results, we seem to be on the way. Since the tests were ordered, the insurance company must have approved the transplant. That makes it a good end to a not so hot week. Apparently, taking a break from dexamethasone and Revlimid, at least for me, ran me into a wall. The week started very well, but by mid week I crashed. But, I hung in there and I’m ok now. Monday I see my oncologist, to evaluate how Revlimid worked, and to get started on it again. I said last week started well because last Monday my wife and I celebrated our 35th wedding anniversary. That has made me all the more determined to beat Poindexter because 35 years with her simply is not enough. God has definitely blessed me by allowing me to share life with this remarkable woman. I want at least 35 more years, so Poindexter, you just can’t have me yet.

St. Peregrine, Pray for us
Blessed John XXIII, Pray for us
Deacon John
Twelfth Sunday in Ordinary Time
June 21, 2009

Revlimid is OK by Me

Today I saw my oncologist. It also happens to be the end of my second week on Revlimid.This drug is working wonderfully. The oncologist noted that my blood counts remain good, and that the plasmacytomasare going away. The only real side effect bothering me is fatigue. I will admit that I remain very tired, no matter how little I seem to do. Once Poindexter is in control, the dose of Revlimid can be adjusted to help compensate for the fatigue. I have been working part time, but I plan on pushing myself a bit more, and hopefully getting to a full time schedule in a couple of weeks. If, my wife and my boss and my co-workers will let me! The great thing is being nearly pain free. My ribs are still tender from the largest tumor, which is now virtually gone. I'm sure some kind of bone damage must have been done, but that's ok, I'll trade it for the move toward remission. All we can do now is jump through the insurance hoops and wait for the bone marrow transplant, donation courtesy of my youngest sister. I still can't find the words to express how much I owe her, and how grateful I am. I pray God's greatest blessings on her everyday. Ironically, my sister's 89 year old mother-in-law passed away a few weeks ago from...Multiple Myeloma. I think this has given my sister a perspective that no one else shares. Things are lining up, and I fully believe complete remission is just around the corner. Poindexter will not prevail. Keep praying for me as I pray for you.
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Feast of St. Boniface
June 5, 2009

We Have a Winner

The sibling donor sweepstakes has come to a conclusion and we have a lucky(?)winner.
The winner is my youngest sister who is a perfect match. I thought it might be her since we are more physically alike than my other siblings. So, she gets the all expense paid trip to Chicago, and unfortunately the experience of Neupogin, a drug designed to stimulate stem cell production. Then there is the real fun of harvesting the stem cells. None of this will be pleasant for her, and I cannot adequately express my gratitude to her for being willing to undergo this for me. Yes, I would do it for her, or any of my siblings, we all say we would do this for one another, but actually being called on to do it, that's different. But she will and I am more grateful than I can express. She is giving me the gift of life, and there is no adequate way to repay her. All I can say is thank you. Please pray for her as she prepares for this donation of life. I get the feeling that the docs in Chicago want to do this as soon as possible, so now it's down to insurance approval. Please pray that that happens quickly, so we can get started again.

St. Peregrine, pray for us.
Blessed John XXIII, pray for us.
Deacon John
The Vigil of Pentecost
May 30, 2009

One Week of Revlimid Down

I started chemo a week ago Friday with Revlimid a drug intended for those with relapsed MM. The nice thing about Revlimid is that it is a capsule, so I don't have to sit in a doctors office hooked to an IV. The best thing is that it is working. Tumors are shrinking like mad, I am nearly pain free, and this is only in a week. On the down side, I am tired, and the possibility of low blood counts increases the chance of infection. It does seem that Revlimid is getting Poindexter under control. So, I keep praying that this new treatment will reign this disease in enough to get the donated bone marrow transplant, and hopefully finish Poindexter off. Keep praying.
St. Peregrine, pray for us.
Blessed John XXIII, pray for us.
Deacon John
The Vigil of Pentecost
May 30, 2009

The Journey Continues

I haven’t posted for a while mainly because I just haven’t felt well. So far for May it’s been Cancer 3, Me 1. Things are starting to turn around. I started a new chemo regime, Revlimid, a drug for those who have relapsed Multiple Myeloma. This should bring Poindexter back into control. We went to Chicago earlier this month to be evaluated for a bone marrow transplant using donated bone marrow. My siblings, the best hope for a match, all received kits in order to be tested and typed for the transplant. I was typed while in Chicago. It takes between 2-4 weeks to get the results, so it may be a couple of more weeks to see if we have a winner. I’m not certain yet of the timeline on how this transplant will go. When it does occur, I will again be hospitalized in Chicago for about 3-4 weeks. We asked about others being tested since many have volunteered, but the best advice the doctor had was jut to get on the national bone marrow donor registry. When the transplant does happen the lucky(?) winner of the donor pool gets to spend a little time in Chicago as well. I always knew Poindexter would come back, I just didn’t think it would be so soon. That’s OK, we will just jump back into the fray, trust in God, and fight on.
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

Deacon John
Solemnity of the Ascension
May 24, 2009

Transplant Time Again?

Well, radiation is completed on my shoulder and eye, and they are vastly better. I can move my arm again and there is almost no pain. We've been wondering what the next step will be and today we heard from Dr. Cohen in Chicago. He is considering, at this point using marrow from a donor. This is probably several months away, so there is likely going to be more chemo here first. Well, at least we have the beginning of a plan. Something needs to happen, I've felt terrible for the past week, and these nodules that are springing up all over are causing some pain. I am not complaining though, because it could be a lot worse. Thank God I have options. It looks like we'll be heading back to Chicago. let's just hope it's not in the winter!
St. Peregrine, pray for us.
Blessed John XXIII, pray for us.
Deacon John
May 5, 2009