Saturday, November 5, 2011

A Rare Bird

So Geoff and I met with the hematologist oncologist last week. Whew. What a day.

I do indeed have myeloid dysplasia syndrome (MDS) which is a pre-leukemia NEW primary cancer caused by my chemotherapy treatment in 2007. I was one of the less than 1% of people treated with adriamycin and cytoxin chemotherapies to develop MDS and had an even smaller chance of this occurring given my relatively young age. Lucky me! The chemo basically caused me to develop a chromosomal abnormality such that I am now missing a chromosome. It is called 7 q deletion syndrome and is one of the more serious forms of MDS (of course! As if it would be any other way!) My oncologist said at one point that I continue to perplex even the fine medical minds at UNCCH. How cool!

Dr. Foster, the hematologist oncologist I will be seeing, gave us "the talk." Upon receiving my consent, he advised that the prognosis for this disease is not good even by itself (median survival of 14 months) without having late-stage breast cancer but is obviously complicated by the combination of the two cancers. We asked Dr. Foster if it would be ok for me to travel and he said, very forcefully, "GO!!" So go we will!!! I took that to mean "go while you still can."

The family is headed to Amelia Island again this year to the Ritz Carlton Resort, for Thanksgiving food and time with Santa for the girls. They have a large Christmas tree lighting outside and hayrides and photos with Santa, etc. A very fun, family-oriented time for all. And no cooking!

Then, in early December, Geoff and I will scoot off to Paris for a week by ourselves. That will empty my bucket for now. When we get back I can start dreaming about trips to Barcelona or Scotland or something!! Then, for Christmas, we are due to go to Boston as a family to hang out with Geoff's mom and sisters and their kids.

After the trips, I will start treatment :( It will be an infusion treatment 7 days out of every month, which is why I cannot start this before traveling so much.

The hope is that the treatment, as well as the blood transfusions I will receive twice a month and before each big trip, will help my blood counts go up. My platelets, white and red blood cells, and hemoglobin counts have been really low and continue to drop. The transfusions help me to feel better by increasing my red blood cell and hemoglobin counts. The platelet issues require separate platelet transfusions and are more complicated and contraindicated even.

Not to be morose, but the risks I face with the low blood counts are infection (serious hospitalization kind of infection) from low WBC counts and my body's inability to fight off infection, and bleeding to death from the low platelet counts (especially internal bleeding). Then, of course, I still have the breast cancer issues going on with bone and liver metastases which present their own problems.

So, bright news, eh? I just had a blood transfusion and that did give me more energy for life :) Obviously, the situation is serious and I am getting my affairs in order, so to speak. But we still pray for a miracle every day and believe in it!!!!!

Thank you for your continued prayers! We still would love to have food brought to our house despite the food complications, if possible. It is so hard to cook right now.

I do not know what God's plan is for us but I believe with my heart and my soul that he has a reason for my illnesses. I have surrendered my life to Christ and am not afraid of what the future holds for me or my family because I know that even with me gone the girls still have God to hold onto. My hope is that, through this ordeal, the girls and Geoff will become closer to Jesus than they otherwise would. If that happens, isn't all of this somehow for the best? I know, that's a tough jump given the girls' young ages but they have to hold onto someone through this tough time.

Well, off to do something else. Thanks for listening. Sorry this is so long.

Love to you all,
Sofie

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

1 comment:

  1. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


    Susan

    Low Platelets Treatment and Natural Remedies

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