Yesterday and today have been tough.
Last night I waited forever in the waiting room to meet with my oncologist. He examined me and took me back to his office to talk about staging. I am either Stage 3a or Stage 4a. My PET scan showed bone involvement but my bone marrow biopsy did not. It does not effect my treatment. Even if it’s in my bone, it’s lymphoma in the bone and not bone cancer so there is no change in radiation. It does mean that my chemotherapy will be more intense and last a bit longer than anticipated. I will be in chemo for 6 – 8 months, or 2 months (cycles) after my last clear PET scan. The PET scan will happen monthly.
I am going back on Saturday afternoon to get an MRI of my pelvis to look further into the bone issue. Who knew you could get scheduled MRIs on a weekend? Pretty awesome.
While I want to reemphasize that Stage 4 means virtually nothing about my long term prognosis or my current condition, it’s a huge psychological blow. No one wants to hear Stage 4, which is the worst and means that the disease is widespread. I’ve been struggling quite a bit with that.
I had a rather frustrating meeting with my fertility specialist on Wednesday morning that will merit it’s own post when it’s not so raw. Beware, it will get political.
After tomorrow, most of the scheduling will be done which will calm me down. Tomorrow afternoon I’m meeting with the social worker at the cancer center to talk about finding rides, charities to help with copay/time out of work, and other things. After that meeting, I’ll be meeting with the chemo team for a “chemo teach-in” so I will know exactly what to expect. The port, also known as a mediport or a portacath, will go in Monday morning and will be my buddy closest to my heart (hyuck hyuck) for the next 2 years or so. Not looking forward to it, but as I told my nurses- I whine about things I’m scared of or dreading nonstop, but I do it in the end. It has to be done.
I’ve been told that your mentality flips a switch once chemo starts. It’s no longer worry and wait but rather fight mode. If there’s anything to look forward to chemo, it’s that.
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