A new serious rash and neck/lymph node pain.

 There have been several times, documented in this blog, when I thought I was at the point where I had to enter cytotoxic chemotherapy because, from the beginning, doctors have told me that is my only chance. They call this incurable, but a small percentage of people do beat it for long periods of time by getting into remission with very harsh and damaging chemo and then have the stem cell/bone marrow transplant. I've met people with long term disabilities from the treatment. Many of them had no choice because they were so sick. Others jumped into treatment with nothing but a swollen lymphnode. I know I have been fortunate to have all this time during which I have been able to do just about anything I want.

In a way, I have been disappointed when I felt ready to "get after it" but my body has shown me (to the surprise of my doctors) that it wasn't "taking off" the way Dr. Haverkos and Dr. Nadamane predicted it would. I have also been relieved, of course, to be able to go on with my life. To be perfectly honest, I am terrified of the chemo to which so many people I've met have said, "Never again!" 

On the other hand, it has been such a challenge this past nearly 7 years. I told my oncologist just a couple weeks ago that I feel confused. I am only 58 years old but I feel much older. It hurts my feelings more than I want to admit when I get comments like, "Why do you need a nap? You got up at 8!" It bugs me that I feel like a deflated balloon much of the time. I've had family members think I'm in remission or don't have T-cell lymphoma after all. It is always on my mind and I can feel very alone in that. My joy is being with my grandkids but it is often a huge push to get through the day with them. 

I was raised by a person who was very successful in her professional life because she always pushed through. The end of her life was very different, though. There were flashes of times she was still engaged in life, the way I want to be. She had the worst "luck," though. She'd get close to someone she really connected with (which she didn't do often) and they would die, for example. She spent a lot of time alone at the end of her life - the noise of the TV her greatest friend. She was very happy to die young, in my view. She said it was because she never wanted to be a burden. I think it was because she was terrified to be vulnerable. 

My body has trouble relaxing into what "is." It seems to be that I need a lot of rest. I meet with a spiritual director who focuses her current writings and teachings on how it is to age and adapt to the realities of that. I think she is 80 now, or very close to it. I fight that what she is teaching seems to relate to me. I feel like I'm failing, somehow. I'm being lazy. My body would do better if I were more fit and I ate perfectly, but I just can't.

Over the last 10 days or so, I've developed a pattern I've seen before, but with some concerning additions. Around 2pm each day, I get an ichy, raised, very red and blotchy rash. I've had them before but yesterday was a whole new level. From my head and ears, face, back, thighs, ankles - I itched like crazy. I am freezing cold but heat makes the rash worse. I take baking soda baths and found a powder used for rashes like poison oak in the bath that may help a bit. In addition, the lymph nodes on the left side of my neck have become sore and sometimes achy and painful. The lymph nodes I've had at the base of my neck is now the size of a plum and it feels like it has a hard nodule in the middle. The "frankenstein" nodes, as I call them, are very tender. Is it becasuse of the castor oil? Is that good or bad? I'm so sick of not knowing - anything!

In desperation, I called the oncologist's office (Dr. Mellott) yesterday (Friday) at almost 4:00pm. I got the best receptionist (Sharon) who listened to me and sprung into action. She got a hold of the doctor who will come in early Monday morning to see me. I'll probably have to show her pictures of the rash since, strangely, it comes up mainly in the afternoons. 

Last night, on the UC Health portal, some new info popped up on my test results. It was a series of analyses about my specific mutations and blood chemistry. I suspect she is preparing for chemo. Interestingly, it is not there this morning for me to copy and paste here. 

I feel like such a whimp. So many people do the hard chemo every day. It's as if I have known just enough through this whole thing to avoid certain dangers, but I really haven't been able to implement what I learned. I feel like something of a failure, but then I really don't know what worked or would have worked anyhow. I have relied on God and yet, I don't really think I ever believed I would be healed. I don't share these thoughts with many people because being argued with and told how great I have done just makes me feel like more of a fraud. And I feel we all prop up our egos at times like this. It is very hard to be gracious when people give me the "if you'd only..." messages. A tincture, a mediation, a supplement or doctor's regime. If I've learned anything in this, it is to keep my mouth shut - advice is very rarely helpful and just makes a suffering person feel worse much of the time.

I suspect Dr. Mellott is preparing to start what she's always wanted me to do...CHOEP plus whatever else. I have had so much trouble with the less toxic targeted drugs...I dread the whole thing. I know that water fasting before and after chemo makes it more effective and less toxic. Will I be able to do it? 

She said the last couple times we talked about this route that I'd need to be hospitalized for a few days at the beginning because of tumor lysis syndrome. With the large masses I can now feel, I tend to agree with her. If tumors die off too quickly, it can be very dangerous. 

I may be entering the deep end of the pool here - the medical world I don't fully trust but may hold the answers to me getting more time here. I know my attitude will be crucial. I certainly have a lot of blessings in terms of caring people, financial stability (as long as I don't go back into the alternative medical world), and faith. I know I've fallen into some negative thought patterns, which I'm working on. 

I have no idea who reads this. It's become more of a journal for myself than anything. If you'd taken the time to read this far, I thank you for caring. And/or I hope it can help someone someday.