Wow, yesterday was rough!
I was looking forward to meeting my new doctor and getting things going so I could get my bone marrow transplant and be "cured" of cancer.
At least that is the way I understood it from the doctor in TN. He said (or at least I heard) that with the bone marrow transplant I would be cured of the multiple myeloma and not have to worry about it coming back.
Well, guess what? THERE IS NO CURE!!!
Yes, that's the way I felt too. I felt like I had been slapped in the face, punched in the gut and slammed to the floor!!!!!
OK. Now that bit of information is out of the way I can tell you that I really loved the Stephenson Cancer Center at the Oklahoma University Health Sciences Complex in Oklahoma City.
When we arrived the valet was extremely friendly. We told him it was our first visit and he pointed the way to just inside the front door to the receptionist. She told us exactly how to get where we needed to be. But there is a wonderful cafeteria right there on the first floor which smelled really good. We didn't go over to look but were pleased to know that hot food is available.
I went to the Hemetology Oncology section of this building. Everyone that I was in contact with is a member of the Transplant Team. Really was not expecting to be immersed into all that on the first visit but I guess it is really good (but a little intense, too, since I had only been told I was going to be evaluated for the possibility). But after doing the first time patient paperwork I met Rick Cunningham, a social worker for the transplant team.
He is the one that delivered the No Cure statement. He let us know very early on in our conversation that "This is not a cure. It is to put the multiple myeloma into remission. There is no cure." Very straight forward but I guess that way I cannot say that I still thought there was a cure. So no misunderstanding him (and even later the doctor) and undue expectations about what will happen.
He explained to be about treatment, suggested a place to stay in the RV that is a little closer to the hospital (but I don't think we will move unless it is a lot cheaper), and basically visited with us about how important it is that I have a good caregiver. When I go into isolation Keith can come in and out as long as he is not ill but I will not be able to have visitors "with diapers" so the little ones can't come.
Rick talked with us about how we each felt about the transplant and recovery time needed. After explaining to him that I hope to return to work as soon as possible we found out that I will need to be here in OKC for about a year!! Really don't know how we will be able to do that financially BUT I will trust the Lord to provide. (Just wish I knew how, though! LOL)
Then I received a book that outlines the transplant procedure completely, from telling what each person we meet will do by their title. I was given a little time to look through that and then the doctor came in.
Dr. Carrie Yuen is a petite Asian woman (about 4' 10") and very soft spoken but she knows her stuff. She spoke to us at length about the transplant, the testing that is needed including another bone marrow draw, Ouch!, blood work and a 24 hour urine test. There may be other things after these are completed. Don't have to do the bone marrow yet but it has to be done before the transplant takes place. The process starts with receiving authorization from the insurance company.
The course of treatment she selected is for me is in three steps:
1. to have the chemo drug Velcade which is injected into the abdomen or thighs so I won't need a port at this time. I will get two shots a week for two weeks and then have two weeks off with no shots or treatment. That is a course, 28 days. She suggests 3 to 4 months of this treatment. Then they will test to see how I am responding. When mostly cancer free we move on to the 2nd step
2. Next I will receive some type of medicine to make my white blood cells multiply and to cause my blood to make more stem cells, etc. Not exactly sure what all goes on but after this medication I will have to have my blood drawn (collected) and saved. This will take about a week for medication to work and have the blood drawn in two or three times. They will make sure no cancer cells in it and freeze it.
3. I will enter the hospital and go into isolation. I will be there 10 days minimum and 30 to 45 days maximum barring complications. At that time I think I have to have a port put in. For anyone who does not know a port is inserted in your skin surgically. In lay terms it's like a permanent IV line except it usually has three openings. It is used for lots of things like blood draws, transfusions if needed, receiving chemo while in isolation and to administer other drugs as necessary.
I will receive 3 or 4 days of intense chemo at that time to kill off any remaining cancer cells and of course it also kills off some good cells. At that time I will probably lose my hair (no big deal to me - just give me hats to wear). I cannot be around anyone who is ill even with a runny nose because if I get an infection at this time it would be really hard to fight it off.
Then I will receive my cleaned blood that was drawn in step 2. It will take about a month for my blood to have enough antibodies built up that I can come out of isolation. While in there I can have my computer (but they don't provide internet, I have to work on that part! I will need to be able to blog, email, etc), I will have a phone and can read, etc. I even get 24/7 room service and nursing.
The unit is only 8 beds so I am expecting excellent care. They want me to get up and move around to keep my strength up.
SO, that is the course of treatment. After all that I have to be careful for another few months about being around large crowds of people because my resistance to illness will be very low. All in all Dr. Yuen said it will be about one year before she will feel comfortable in my returning to work away from OKC. Of course there will be followups for ever.
But the prognosis is good, just not excellent. There is the probability that the multiple myeloma will return somewhere but hopefully not any time soon. And if I can go 10 to 15 years without it coming back I will be extremely happy. Now, that time period is my own not from the doctor.
Anyway, to end this on a much lighter note than I started, we are extremely hopeful that this treatment will work and put the multiple myeloma in remission and that it will stay in remission for a long time.
As far as being home, well it has been great. We have been here about 10 days and I am worn out with visiting but also needed to be with family after being away for two years. Our granddaughter Cassisdy is a senior this year and has a research paper due before Thanksgiving. So we are getting together every night for me to help her with it. And, yes, it is just help. I am making her do all of it, just here for her to bounce her ideas off and help keep her focused (she would rather just visit with us and text her boyfriend).
The great grandkids have grown so much since we saw them briefly in May. And they remembered us. I was so glad because we had not seen them but such a short time. Of course, having Buster, our dog, with us certainly helped, too.
I am trying to go to work for H&R Block for the tax season. I believe I can get through most of tax season before they do the transplant. That money will certainly help.
We visited a church in Mustang (a suburb of OKC) on Sunday and it was wonderful. But it is so far over there and the church is so big. We prefer a much smaller church so will be looking for a church home over the next couple of Sundays.
I really didn't intend for this to become a book but sometimes I just get carried away, I have so much to tell you.
I love and miss each of my friends but know you are all praying for me and that really helps a lot.
We can receive mail directly here at 2701D Debbie, Midwest City, OK 73110 so would love to hear from any of you.
Have a wonderful day,