Why can’t I just be spineless like Gumby?

My apologies for not updating the blog in almost two weeks. Here is the rundown:

After returning from Texas, we found out some fairly positive news. There was more than one chemo option available to try, in attempt to reduce my cancer enough to qualify for the donor transplant. It was decided that I would start on rituximab and another chemo drug that following week, then on day 3 I would have a type of chemo where they inject it directly into my spine. Chemo started off ok; had a little nausea and fatigue, but overall it was tolerable. When it came to the spinal chemo however, the night I came home, I had a horrible spinal headache which caused me to vomit any time I stood up, and was completely incapacitating. I also spiked a fever of 101. This was Thursday.

The next day was macks Christmas recital at school, along with polar express. I couldn’t even move. I missed it all.

I spoke dr c on Friday, and since I didn’t have any other symptoms, we both thought the fevers were due to the neulasta shot I got, and the headaches from the spinal procedure (sometimes that procedure can cause your spinal fluid to slowly leak into my brain). Apparently there is a procedure called a blood patch where they inject your spine with your own blood to clot and stop the leak. It was too late to have it done til after the weekend.

By Saturday I was worse. Still laying flat, still throwing up every time I would stand, and fever spiked to 102. Dr c told me to go to the ER. Went to Geauga ER, which is great by the way, received some pain meds and anti nausea and felt better. Went home. Ate some soup. Missed family Xmas party. By 8pm, headache back in full force. Same goes for Sunday.

On Monday, felt even worse, if possible, and was admitted to Seidman. Pain meds seem not to work anymore. A few hours ago, I had another LP procedure where they extract my spinal fluid to test for infection, and had the blood patch done. It hurt like a bitch. It was supposed to have an immediate effect. It didn’t work. Tested negative for flu and CT of head were clear. So folks, in true me fashion, it looks like I’m here for Xmas again. And I just can’t believe this is happening.

I know in order to stay positive, I keep telling myself that I can totally give up another Christmas for 20 more. But the reality is, I really don’t know how many Christmases I have left. And since I (hopefully) will be leaving my family for half a year, I especially wanted to make this one special. Not in the cards I guess.

I know things could be worse, but I’m just feeling so terrible that it’s hard to stay positive. As always, I will do my best. One positive note is that I received a call from the unrelated donor match coordinator in Houston, who informed me that I actually have over 50,000 potential matches! Awesome news!! I told her to pick the healthiest looking male possible!

So anywhere that’s where I’m at. Seidman (4th floor this time). I’ve had wonderful nurses, and such amazing support from my friends and family. So thank you so much for that. Jen Sherman-I literally cried. Thank you so much. And community pre-k thank you for being awesome.

Dear universe- PLEASE. GIVE ME A BREAK NOW. Thanks, and Fuck you, Mary buell

Ps my husband is a tolerant, supportive and amazing man. Very lucky to have him.

Happy holidays, friends.

7 thoughts on “Why can’t I just be spineless like Gumby?

  1. Oh Mary – do stay as strong as you’re able. I think about you daily and pray only for good things to happen for you and your family. I hope you get to spend many Christmases with them!

  2. Keeping you in prayer – it probably doesn’t seem like much but it’s all I have to give. I can’t believe you are blogging from the hospital again, though.

    LORD, bring healing and restoration to Mary – fill her with Your rivers of living water and flush out all illness and disease, leaving her refreshed and renewed in body, mind, and spirit. Fill her with Your strength when she is weak, Your confidence when she is afraid, Your peace when anxiety grips her, Your joy when she feels sorrow. Mostly, fill her with the knowledge of Your deep and permanent love for her, her husband, and son, and the confident knowledge that NOTHING, not cancer, not hospitals, not chemo, not fear, not disbelief, not anger – NOTHING – can separate her from that love. In the name of Jesus Christ, amen.

  3. Mary, I work with your Aunt Jeanne. She’s one of the best people I’ve ever met and she talks about you a lot! I just wanted to let you know that my sister had to have the blood patch, the first two didn’t work but the third was instant relief. I hope yours works sooner. Merry Christmas to you and your family. I think of you every day and hope this works for you!!!
    Tina Hendrickson

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