Archive for March, 2018

Calm before the storm

Short version: Yesterday was my last day of chemo (for now). For the next 2 weeks, I go to the hospital for blood work and/or transfusions every Monday, Wednesday and Friday. Most likely we will not have any updates on the disease for a couple weeks.

Round 1 of chemo (day 5 of 5) finished yesterday. I feel pretty good so far, the chemo doesn’t normally affect how I feel. Over the next few days my white blood cell, hemoglobin and platelet counts will continue to fall. The blood work results will determine whether or not I have to stay for one or more transfusions. They can potentially be very long days.

I received my breathing machine on Friday. It’s very small and quiet, and I am enjoying it a lot. It includes a humidifier. The chemo dries the body out something horrible.

Going forward, I will have blood drawn every Monday, Wednesday and Friday. The results of the blood work will determine if I will need to stay for blood products that day. I could receive multiple transfusions, which can not be run at the same time. Low hemoglobin will give me fatigue, headaches and take my breath away. Low platelets will give me headaches, lack of clotting, mouth sores, mouth and nose bleeding, and could kill me if I fall (internal bleeding).

How can you help? Things are very overwhelming as I am trying to catch up with friends and family and prepare for whatever happens next.

I now have a form to the right side of the blog titled “Death Notification”. If you want to be notified upon my death, please fill it out. Hopefully this is not for many years to come (of course) :)

You can subscribe to the blog to get updates via email. There is a form to your right if you’d like to subscribe.

I now have an Amazon wish list. There is a button for it at the top of the blog.

We can always use help with the yard. Fall’s leaves have yet to be raked.

We can always use food, especially prepared food. I can’t prepare meals anymore and my husband is being pulled in too many directions.

If you have any recommendations on things that you think would help us out, I am all ears.

Thanks again for everything :)

My kick ass leukemia is taking over

Today I had my first doctor visit since my most recent recurrence.

The short story: It’s more aggressive than before, and very fast. It’s about 3 times as bad this time. Prognosis is poor, I will most likely not survive this, and I could potentially be dead in a matter of weeks. We began chemo today, and will continue it for the next 5 days.

The long story: When I was first diagnosed, I had chromosomes 8 & 21 transposed. We thought my prognosis was good, but the diease proved otherwise. This time, there are also chromosomes 8 & 21 transposed, and 2 other sets of chromosomes…plus one other chromosome is “messed up”. We are waiting on results to see if I have any gene mutations, which usually makes the prognosis even worse, and requires different chemo drugs. I began chemo today, day 1 of 5. Sunday will be my 5th day. We’re planning on doing another chemo does in about 28 days.We are beginning with a light chemo drug to see if my body can tolerate it. The next step depends on how the cancerous cells react, and how my body does.My prognosis is poor, and my doctor actually said “we won’t cure this”. My GVH (Graft vs Host Disease) also complicates things even further. My blood is now 43% mine and 57% my donor’s, which complicates things even more. Because it’s so fast and aggressive this time, I may only have a matter of weeks. I am doing everything I can to prepare, and will be adding some things to the blog for those of you who wish to be notified when things happen.

Wish me the best, I’ll continue to keep everyone updated. Thanks again for all the thoughts, prayers, donations, gifts and everything else.

It’s back :(

I have been getting blood work once a month. Everything has looked good until the blood that was drawn on March 7th. I got the news on Friday the 9th, which was 16% bad cells. I had a bone marrow biopsy on Monday the 12th, and got those results on Friday the 16th.

Recurring AML (Acute Myeloid Leukemia), 61% leukemic cells in the bone marrow. This is almost double the number of leukemic cells in my bone marrow in October 2013 when first diagnosed. I have an appointment with my doctor Wednesday the 21st to discuss options. Most likely we will begin with chemo ASAP.

My options are now limited due to my declining health and GVH (Graft vs Host disease). I have had a lot of pain, bloating, swelling, fractures, and other issues over the last year. My GoFundMe story gives a good overview.

I’ll be updating the blog more with everything that’s going on.