When the rubber meets the road

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!

The first few days of the 22 hour a day chemo regime wasn't too bad. The 2nd night my port came completely out when I turned over in bed so there was something of a 4am fire drill. It's not safe for the nurses to be exposed to the spilled chemo drugs and they were worried my skin might blister. The last night, my IV alarm went off ever 10 - 15 minutes, literally, because of air in the tubes. By the 5th day, I felt I was coming out of my skin.  How in the world could I manage a 5 week stay for a bone marrow transplant? I've had a social worker and psychologist come visit me in the hospital "to help me prepare for it." Much more on that later. The morning after I went home, my feet and hands started to itch terribly. I used a prescription cream and thought I overdid it as the areas turned red/purple and angry and are so so so itchy. It continues today, 4 days later.   The nausea is pretty well controlled by medications. Lots and lots of medications. I'm in their...

 Good morning.  I just ate, showered, blew dry my hair, lotioned-up, dressed, organized clothes. I couldn't do that before this chemo - it all feels like a miracle. The muscle pain and fatigue the lasts months would have had me taking all day to do just the minimum. I am so thankful!  The attending came in to explain they are speeding up my bags so I should go home tomorrow evening. They are all astounded by how I've done. Could it be all the prayers going up? Please - if you have been praying for comfort and ease of treatment, please keep it up!  Thank you for those sending bag label suggestions. It's not easy to get things to stick /-; Day 1 was Wellness - and I explained that came from a quote I love. It was a double meaning - my physical and spiritual wellness, but the quote from Julien of N... "All shall be well, and all shall be well. All manner of thing shall be well." relates to the big "ALL" of God's plan.  Day 2 were Power - as prompted by ...