Friday, December 05, 2008

We Are Going Home

We will be leaving on Monday morning. They have decided that at this time not to proceed with the transplant. Yesterday it was a go. We picked up David from the clipper. We went to our first appointment in the morning. We got called away from that appointment to go and see Dr. M. Apparently the myeloma has been busy and now there is 30% cancer in his bone marrow. This level is too high for the transplant to be effective. They have decided to send him home for a few rounds of Velcade and dex. Why did it take them this long to figure this out? I do not know! They have had these test results for over a week. Why did not Dr. V. do a bone marrow biopsy last August when he should have? Ask him. If we would have been sent in the half year paremeter that they had told us about, I don't think that the counts would have been so high. If they had bothered to give him the minamal follow up by doing the bone marrow biopsy at the 3 month intervals that they said they were going to do, we would have caught this and he could have had some treatment then the transplant would have been a go. Hopefully the Velcade and dex combo will bring those levels down and in a couple of months come back for another try. I won't even try to say how we feelm right now. The nurse at the clicic told us to be tough. I wonder how long I can be tough. I don't want to be tough.

15 comments:

Sue said...

Big Hugs!

Lucy said...

I am so sorry to hear things are not going your way at this time. I am hoping this is just a speed bump in this horrible ride.
As far as hanging tough, well, sometimes you need have a good cry, vent and feel sorry for yourself day and then you will be ready to 'hang tough'. The blog was a good start for venting!!!
May I say a prayer for you and your husband? I don't want to offend you?

Martha said...

John and Chris, I am soo sorry that things are not going as planned...I wish I knew what to say to give you peace about things, but I am at a loss.....I cannot believe the Dr's would neglect to keep on eye on that important stuff.....makes me wonder even more about Dr's and this disease! Our Dr's are not always the best at things with dad either...praying for you!

Christine said...

Lucy, all prayers are welcome. We will be glad that you are praying. :)

Martha, the Drs have been less than they should be, in Canada anyway. We will be addressing all this when we get home. Our daughter has phoned Regina and they will investigate. I will not hold my breath though. I would be very surprised if they will ever admit that things have not been as they should. Do they ever?

expateek said...

Hi Christine -- sorry you are going through such a rough time. I'll be thinking of you both. x

footsack said...

I am so sorry! We are praying for you! I know that may sound a bit empty but we are.

diana said...

i'm so sorry christine. you both must be so frustrated and scared. how i wish things were different for you. you both will remain in my prayers. {{hugs}}

p.s. don't feel like you have to be tough 24/7. that would be unreasonable for even the toughest.

The Invisible Mo said...

I'll save my comments to give you in person tomorrow. This is unbelievable. I will phone when I have a better idea of the time, but it should be in the afternoon or early evening. It depends on if I can get out of the second appointment at 2:30.

Aspergertopia said...

Oh my goodness. I cannot believe this has happened. There is no excuse for this kind of treatment. You don't need this.It makes me so sick. Please let me know if there is anything I can do.

Hang in there.

Momisodes said...

Oh Christine, I am so sorry to hear this. I cannot even imagine how difficult this news has been for you all. It sounds like they could have been more proactive sooner. I am so sorry. I hope the Velcade and dex will be effective in the months to come. Please know that you are all in my thoughts and prayers.

Karen said...

I am so sorry to hear that they are sending him home. I know it is a hard thing to do. Ha, I didn't want to be tough, either when my husband was ill, but you have to be. Then you have to be even tougher.

I'll be keeping you in my thoughts.

sweetisu said...

Oh Chris. NO! Why! I'm sorry. I hope the 2 drugs will do its job and that you both will be back to Seattle soon to finish up the job.

Can I share with you, TWO nurses refused to use the port to administer chemo, on TWO different occasions, because they "didn't know how or weren't very familiar with the port"...?!?! This happened last month to a good friend's mom. WHY did they put a port in for then??

Alls to say, I'm really sorry. Some doctors (and nurses) do not deserve to be holding their positions.

Fluffy said...

When Louie and I were down, I would tell my boss that he was sick and call the school with the same excuse. We would go to the movies and buy an enormous container of popcorn and threw it all over the theatre. Sometimes we went to a state park to scream and throw rocks. Before going home, we stopped at an ice cream place and the most disgusting thing on the menu. It really helped.

Saucy said...

You can be tough. We can help you be tough.

Hugs!

little erin said...

i just wanted to let you know that i am thinking positive thoughts for you. sometimes you need to take a break from being tough in order to refuel. and when you do, just know that we'll all be here to be tough for you while you're taking a break.