Lots of news

Today is our 38th anniversary so we spent it visiting MCV and meeting with Dr. McCarty. It was a very informative use of our time. The results of Gennies biopsy were encouraging. She is in a very early stage of MDS. She is very healthy otherwise. She has as we knew secondary MDS. This is a form of the disease that is caused from exposure to chemo and radiation used to cure another cancer. In her case it was breast cancer about fifteen years ago. This type of MDS is very unpredictable and eventually moves on to Leukemia. She also has a few other chromosomal abnormalities. All of this and much more leads us to a complete bone marrow transplant as the only means to a cure.

Dr. McCarty has set the following course of action. In early September Gennie will begin a series of medication call Vidaza (Azacitidine Injection). This is seven shots of medication given one a day. This will be done for a series of 2 cycles. (28 days per cycle). Then she will have another biopsy. Then two more cycles and another biopsy. All during this procedure she will have her blood tested weekly. Once her marrow reaches the levels that the doctors are looking for she will then start her testing. At that time she will undergo another cycle and then the transplant. If after four cycles she is not yet ready they will continue with as many as needed. There are many test that need to be done before transplant. I am not sure what they all are but there are many. Her donor will also need to be tested at that time. The great news today we heard before going to MCV. We got an e-mail from the transplant coordinator and she told us that Gennies brother Spud is a match. There was only a 25 % chance of this and we hit it right.
Even though it was not necessary to have a sibling match it does help and we are very grateful Spud is one. What a blessing. Once to testing is done and everyone is ready Gennie will be admitted to MCV to begin the transplant procedure. At this point they are talking a complete transplant not a "Mini" or "reduced intensity" this will give her the best chance on not having a relapse. This could change if the test indicate that a full transplant would be to risky. At that time they would change and do a reduced intensity transplant. So nothing is set at this time but full is what they are planning on now. This means that sometime around Jan or Feb of 2012 we might start.

Once the transfusion takes place she will be in the hospital for about a month. The doctor said it may not be that long but plan on a month. This entire time she will have round the clock care. I will be there but not every minute. In fact Dr. McCarty wants me there most of the time but warned about burnout for me when Gennie is being so well cared for. He told me I would have lots to do in good time. Once they release her from the hospital we will take up residence somewhere within 30 minutes from the hospital for about 6 months. At first she will have to go the the hospital every day. That will slowly be reduced as they deem fit. If she develops any fever or other conditions they do not like she will immediately be admitted back in the hospital. This is the time that they expect and hope for some GVHD (graft versus host disease). Things that happen when two immune systems fight each other. The are many forms of this and we will have to deal with whatever form it takes with Gennie. Gennie will be on many many medications during this time. These are designed to help the two systems coexist. Also help her deal with all the different drugs. Drugs to help deal with drugs.

During this time and for the next year of more Gennie will not be allowed to cook, clean, wash cloths, be exposed to folks with any kind of illness, eat out, be in large crowds and lots of other things. It is going to be some of the most difficult things we will have to deal with. I know many of you will want to know about visits. She will be able to see people as long as you are healthy. One major thing the doctors mentioned is to have everyone wash their hands when first arriving for a visit. Also no hugging. Sorry huggers, you will just have to hug me.

There is a light at the end of the tunnel. It may take a couple of years but at some point in the future the doctors will check her immune system and she will be declared healthy and MDS free. At that point she will be able to resume her normal lifestyle. She will have a entirely new immune system complete with new baby shots. We look forward to that day.

A high school friend of mine Dave Fooks contact me after my last post and told me the story of his fiance Katie. Katie had MDS and underwent a BMT in Jan. of this year. Hers was done at University of Penn. She is in her eighth month of recovery and doing well. Gennie and I wish Katie the best. Dave and Katie are planning to be married in October. Katie has a ways to go but it sounds as if things are
progressing well. She is MDS free!!! I hope in a year to be saying the same thing of Gennie.

That's all for now. For all my Tidewater friends good luck this weekend with Irene. We may all need it.            

MCV and back

We went to MCV today and Gennie had her biopsy. She is resting here at home now a little groggy and although she does not feel it now I am sure she will have a sore spot later. The trip was uneventful. I sat in the waiting area for about three hours while they took her back and drew blood, lots of it. Then they prepped her and stuck her  twice. She came wobbling out to me and told me we were ready to go home. She is so funny when she is groggy. We stopped at my brothers house in Williamsburg (Toano) on the way home and had a nice lunch my sister-in-law made. My brother and sister-in-law from Louisiana were there also and it was great to see them one more time before they left for home.

Our next big day is the 25th when we return to MCV for the results and hopefully a game plan for the next several months. That's about all for now.

Health update

Well it has been two weeks now for me and I am just now starting to feel better. I was taking Amoxicillin for five days and there was no change. Yesterday the doctor called in a prescription for a Z-pack. I took the two pills last night and feel much better already. Four more days of it and I now feel sure I will live.

Gennie started to show signs of the same illness. Her oncologist didn't mess around. She started taking cipro yesterday. This morning she is already feeling much better. Thankfully!!! What this all means is that thursday we are going to MCV to continue our journey with MDS/BMT. Gennie will have her next bone marrow biopsy. Gennie's brother Spud has received the test kit form MCV and is mailing it back to them this week. Let's hope he is a match. If not the search begins.

Gennie had an appointment with her local oncologist Monday and her hemoglobin count was low. She has decided not to have another transfusion yet but wait until next visit to see where she is at that time. In the mean time she will need to be careful as ever not to be around folks who are not feeling well. Unfortunately she is stuck with me. 

We have been reading constantly about all of this. The doctor recommended we read as much as we wanted but warned us about  chat rooms and blogs. His warning was that they can either be very pro or very con to the extreme. I have not found that but not all of the reading leads to the happy ending I am hoping for. I have found that this is knowledge too. I would rather know up front that this can be difficult  than learn that along the way.

Time to get back to living. I feel I have missed so much this past week. I am not a good sick person. I don't like sitting around feeling sorry for myself. I am ready to take another pill and get back to life. Now if I could only figure out how to access my bank account since Wells Fargo took over Wachovia. Maybe then I could pay my bills.

On hold for a week

My first job as a caregiver is to stay healthy and support Gennie. Well I mess that up already. For the past week I have had a cold. It started with a sore throat and has progressed to a low grade fever and congestion. Now that we are back in town it has gotten a bit worse and I have made an appointment with my doctor. The part that worries me is that Gennie has started to talk of a sore throat also. She has called MVC and changed her biopsy to next week. Aug. 11th.  I guess we need to expect some setbacks during all of this. I am not posting this for sympathy for me but so anyone following this knows not to expect an update later this week. (I'll take the sympathy if you want to send it) I will post once we have her next appointment.
On a much brighter note. The trip to see our Grandson was great. He is a cutie.