When the rubber meets the road

 After leaving the oncologist today, having met with PA Cassie Duarte and Dr. Haverkos, here is what I sent out to those I'd asked to pray, "Even for NED (no evidence of disease). "We are praising God for all things good in this world, including "full metabolic response." Well. We asked boldly and God heard our prayers. I have had t-cell lymphoma for 7.5 years. I was unable to tolerate 3 targeted drugs I’ve tried over time and the clinical trial I participated didn’t work at all for me. But today I heard the words “Full metabolic response” when describing how the 1st 3 rounds of chemo therapy with an immunotherapy drug have worked so far. That means they can’t see any cancer in the PET scan. I will still need 3 more rounds of chemo/immunotherapy. The statistics say a subsequent bone marrow transplant would give a 50% chance of long term cure. If I don’t do the transplant, they quote an 80% chance of relapse. Thank you for praying and caring so well for me. As he...

 Labor Day Monday, we went to the ER after a week of reoccurring UTI discomfort. Sometimes I felt I was getting a hold of it with D-Mannose, over the counter products like AZO, cranberry juice. and good-ole' Shaklee Alfalfa. I would take Advil occasionally. The week before, I knew I had an infection but by the time I got in to be tested, I had cleared it with all the measures I know.  So how many times do I go back? Keep in mind, I had just finished my 3rd antibiotic. It is scary to think I have an infection with chemo. I haven't really traveled this way before. When I was explaining what's been going on to the ER doc, I was so out of breath that you would have thought I'd just run there. I told him I had no idea why I was having such a hard time talking. They took lots of blood tests and shocked me when the doc poked in his head to tell me I was being admitted. For a UTI?!? It turns out, they tagged me as septic. The shortness of breath and a white blood cell count of ...

Today only took 3.5 hours in the IV chair. I'm feeling OK as long as I keep some food on the tummy - I just had some of my mom's recipe goulash my sister made for me while she visited. Perfect. The anti-nausea meds are pretty amazing these days - now that I take them properly. I suspect the next couple weeks will involve the pretty extreme fatigue. The last round I missed a direction to take Claritin or Zyrtec for 5 days after having a Neulasta injection, which is done through a patch-like thing, similar to a blood sugar monitor. I had terrible muscle/bone pain as a result. I won't make that mistake again. I had UTI's during the last round, which could be because it is harder for my body to fight off infection. The 3rd week was much better but I still needed to lay down sometimes. The doctor reduced the immunotherapy dosage today because I am already feeling some neuropathy in my fingers and toes.  I went to check out wigs since my doctor warned me I should lose the las...

I have felt blocked every time I've thought of posting these past weeks. The fatigue has been amazing. Thinking, reading, communicating has been really tough. I haven't been nauseous; what a glorious thing to be able to say. I get nauseas easily and it can wear me down quickly. The meds that help with that seem to give me muscle pain, however, especially in my shoulders which makes sleep a challenge. Then I got a UTI which warranted a trip to the ER. Unfortunately they didn't do a culture so they put me on an ineffective antibiotic. Once on the correct one, I thought we had it but it came roaring back and I am on another, stronger antibiotic again. All these meds effect the digestive tract which has brought discomforts too.  I find myself wondering if I will get through all this western medical intervention and be able to build back my natural health again. I sometimes fantasize about going back to OHI again with it's wheat grass and raw food or True North with it's...

 The good news - the port wine discolorations on my skin that looked like old lady bruises are peeling close to my normal color. The bad news - I've been dealing with UTIs - finally a culture to see if we are even treating it correctly came back with a new medication that is working. Sleeping is a challenge - I just can't get comfortable. On the other hand, the evening medicine makes me want to sleep late in the morning.  Monday I went in for chemo and an immunotherapy drug. I'm more nervous that the last time when I stayed in the hospital for some reason. Maybe it's because the physician's assistant asked me if I'm up for it. I have a PET scan Sept 9. That will determine if this is working. I can already tell lymph nodes are smaller. But I wonder if I will I ever feel normal again, with energy to plan and follow through on plans?  It is now Thursday. According to the nurse, this should be the hardest day. I can't really complain, as long as I take the anti-...

 I'm thrilled to report that the port wine colored blotches that look like huge deep bruises on my legs are looking better! I thought they were permanent. My hair is falling out faster than I expected. I guess things are just as they should be: cytotoxic chemotherapy kills newly dividing cells, healthy or cancerous. The lymph nodes in my neck are definitely reduced. I'm having night sweats which is a "B" symptom of lymphoma.  I'm 12 days out from the last chemo so I kind of expect to feel really good by now but I realize I am not sure what that is. My muscles all hurt. I'm going to take an Epsom salt bath in a bit. Is it the lymphoma? the chemo? or from being so sedentary? I don't know but I hope it improves soon, especially my neck, which really hurts a lot of the time. We keep trying remedies. I go to a a chiropractor, an acupuncturist, and a massage therapist and my hubby puts patches and CBD pain stuff on it all the time. It has resolved in the past bu...

 One day at a time is dragging into much longer than I anticipated. I am just a deflated balloon. I have to gear myself up for everything. The mouth sores are pretty bad, even through I have products that are supposed help. Easting/swallowing is a challenge. One of the medications gives really bad dry mouth which makes talking and eating and talking hard. I've resorted to sucking on cough drops.  I'm sorry I haven't kept up on this and there are many texts I haven't responded to.  Thank you for your patience and prayers!