Monday, April 7, 2014

On again, off again

So my doctor called me beginning of last week with the results of my bone marrow biopsy. He said they were great. He was looking at a report that said "normal celluarlity" with cancer cells less than 5% of my bone marrow. Really?!? So why are my counts so low?!? No answer to that question.... but everyone said I should be excited, but it was bugging me my counts were so low and there was no explanation.

I went online and was pretty sure I must have an auto-immune disease (Lupus actually fit except for the rash on the face). Then I set it aside and was blissfully ignorant of what was around the corner for me until Sat night when I was looking at gmail and saw an auto message from "My UC Health" that said new message. That was kind of weird because I thought my test results were in and my next appt was not until 4/30. So I went to check and what I saw was the final pathology report. I read it, then I re-read it, then I had Chad read it. It was definitely a different report than what my doctor has seen. It said "extensive presence of hairy cell leukemia" with 80% of my bone marrow cancerous.

I had a bone marrow biopsy a year ago a day off from the one this year. Turns out my doctor gave me the results from my biopsy last year, last week - different year, different result, and, yes, round 2 is on. My doctor has submitted applications for clinical trials at NIH today, tomorrow they are getting submitted for OSU. We reconnect with my doctor on Friday to decide course of treatment and next steps so I can get chemo going before my counts drop off much more and the risk of toxicity increases.

So... we got some spring cleaning done this past weekend, sleds put away, deck furniture cleaned and out of the garage and some flowers and veggies planted in the garden (hopefully not too early!). Hopefully will know what is in store on Friday and can make a plan and enjoy the next few chemo free weekends before that "fun" begins again.

7 comments:

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  2. Beth - Thank you for sharing your blog! I read it from start to finish and couldn't stop. I can't think of a stronger, braver, blushing lady than you. And you are so blessed to have Chad by your side throughout this journey. We are thinking of you and here for you -- always! Fama

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  3. Beth - Thank you for sharing your blog! I read it from start to finish and couldn't stop. I can't think of a stronger, braver, blushing lady than you. And you are so blessed to have Chad by your side throughout this journey. We are thinking of you and here for you -- always! Fama

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  4. Beth - This is Kathy Meyer. Sorry to hear that you have to go through this again, but I know you will go through it with the same grace and strength as in the past. Please know that you are in my thoughts and prayers and let me know if I can help in ANY way.

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  5. Beth - You and your family are in my thoughts and prayers! I am so inspired by your strength and positive attitude. One of my favorite quotes is "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." Your positive attitude is a little thing that makes a big difference. Please let me know if there is anything that I can help with. Hugs, thoughts and prayers!

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  6. Hi Beth--- Hugs and Prayers to you and your family..Your strength keeps on inspiring a lot of folks for sure (including me) ---Jo Tapero

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  7. Sending much love and strength. My thoughts and prayers are with you.
    Take care,
    Susan Tate (and Lila & Henry)

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