What an Ordeal!

I had my planning session with the radiology oncologist today in preparation for getting radiation starting tomorrow. As usual, it’s a mixture of good and bad news. The tumor pressing on my left ulnar nerve (the one that runs down the outside of the arm that’s been causing problems with my little and ring fingers) is actually inside the spinal column and not just in the bone. Apparently that is very unusual – anyone surprised at that? I’m definitely not!! And the lesions in my brain are more than 4 – that’s what they meant when they said too many to count because if there’s more than 4 it’s whole brain radiation instead of focused. They will be able to focus specifically on the C-6 spinal tumor – so that’s a good thing.

Today they fitted me with the mask. It’s a mesh that is warmed and pressed down to conform to my face, then fixed to the table so I can’t move. They also tied my hands to a long tether around my feet to pull down my shoulders and keep them still. Then I was moved in and out of the CT scanner a few times and the mask marked so they know where to aim. My claustrophobia kicked in wearing the mask, so I’ll be taking my relaxer before I go for treatments. They also marked my chest with a little tattoo – not the tattoo I wanted – for placement purposes.

I will have 10 radiation treatments – that’s every weekday for 10 days for 10-15 minutes strapped down on the table. Happy happy joy joy! By the time I was done today, my wrists and shoulders were sore and aching. Thank goodness for drugs!

I still have the imprint of the mesh on my face and a couple of marks on my wrists from the restraints. At least it’s only 10 treatments this time. Then we re-evaluate. Now they just called me to come back for another scan of my C-spine, which evidently didn’t turn out quite right the two times they did it this morning. Hopefully I won’t have to put the mask on again, but if I do, I’m prepared as I took my Ativan as soon as I got home.

The side effects include hair loss (just as it was starting to grow in again!), nausea, and some others that I have written down. There are some less common ones that I expect to have eventually – I’m getting used to being an outlier though I don’t necessarily like it.

So I will endure this as it means hope. Onward and Upward!!

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18 thoughts on “What an Ordeal!

  1. This is sobering and difficult news to hear, to think of you strapped down like that and having to endure this horrendously uncomfortable crap every day!!! We’re going to have to somehow inundate your wall and life with flowers and beautiful pictures so that maybe there will be more of that in your mind when you go in there. I wish I could be there to cheer you on in person. Sending you heart-fulls of love and gentle hugs.

  2. saundragoodman says:

    I’m speechless except to say that I’m grateful they’re working so quickly to help you and that you have an anti-anxiety to help you through this and someone who loves you to accompany you and drive you around.

  3. Try and imagine all of us standing around you while you’re in there…we’re all glowing (apt word for the situation…or maybe “radiating”) with love and healing energy for you. We’re with you all the way, cheering you on, our hearts and spirits standing beside you and surrounding you with love and light. Close your eyes and imagine us all there. Our spirit-hearts are with you.

  4. I’ll be in that friendship circle “glowing” along with everyone else, Ruth! Your attitude is magnificent, and I am in awe of it – and you! I am afraid that if it were me, I would start by having a massive pity party for myself regarding the way they have to bundle you up and tie you down. But I’ll be cheering you on wholeheartedly. Not an ounce of negativity in me! Carry on!

  5. grayconnections says:

    Ruth, I’m so sorry you have to have more treatment. I can’t say I enjoyed my being strapped down by a mask for radiation treatment. However, I DID enjoy demolishing the mask with a blunt instrument after treatment was over. Destroying the mask was a different but very effective form of cancer therapy! Hugs and best hopes for successful treatment.

  6. I like that idea, Janet. I’m not looking forward to the treatment, but I do have a tranquilizer to help overcome the claustrophobia, which only surfaced with my first brain MRI. Live and learn. 😀

  7. I get claustrophobic during brain scans and hang on tightly to that emergency button they give me to hold. I haven’t had the mask, but my best friend has and she really enjoyed smashing hers to pieces once it was all over. I’m really glad they are acting so quickly, Ruth. I’m thinking of you often xxxx

  8. Ruth, I accidentally locked myself in my dad’s navy sea chest when I was a kid and barely made it out. You’d think I would be terribly claustrophobic. However, somehow with my own silence-of-the-lambs mask, I was able to actually fall asleep during my radiation treatments. Go figure. I just kept my eyes closed the whole time (not that you could open them with that mask smashing your face) and somehow that tricked my brain into not realizing I was in such a tight environment. Not sure how/why that worked for me. As for the clamped down mask, I likened it to a facial mammogram, not that I have personal experience with that. 🙂

    I have my mask on the shelf in my room as a reminder, although smashing it sounds like a good idea. Maybe I’ll wait for my 2-year celebration in February.

    Take care. We are all pulling for you and will keep you in our thoughts. I know you will get through this with flying colors.

  9. I never had issues with claustrophobia until my first brain MRI. Maybe it was the stress of being newly diagnosed, the noise of the machine, not knowing what was happening, who knows. It’s only 10 treatments, and I have stuff to help me relax. And no, it’s nothing like a mammogram! LOL Nice try for an analogy though.

  10. Ruth, I wish I knew what to say to comfort you. I just want you to know I’m holding you in my thoughts and heart and wishing for a successful outcome. You have been so inspirational to me I want to help you any way I can so I’m sending lots of love and positive energy you way sister. Big love from me ❤

Ruth passed away from cancer. Please remove from list

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