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Showing posts from July, 2024

The good and the bad - accepting both.

 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...

Unbelievable fatigue and dry mouth with sores,,,still

 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!

Taking it how it comes post-EPOCH chemo

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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...

Words have power.

 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 ...

Another easy day feeling very fortunate.

The nurse just changed the chemo bag to #3. We both think the doctors are crazy to keep saying I am going home Monday because these bags take 22 hours to infuse and I have 2 more bags - that would take me through Tuesday.  My family is making this painless by being with me as well as the fact that I have felt so well.  Mason and Lara came all afternoon. We played Monopoly Go! which is so much easier for a person like me who always hated Monopoly. It was fun and then we had Asian food before they and Andy went home for the night. I'm so fortunate to have my crew! I haven't thought of the new bag's key word yet. I'm off to do that and then it's time to get ready for bed.  Good night with an extra prayer of thanks for 1st responders like the brave secret service personnel who somehow have the courage to run toward the danger when needed.  Extraordinary!

Drinking in love this am

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 What love looks like...homemade juice. It even matches the color of my chemo drip. There must be a meaning there...

What a wonderful, ful ful day!

Seriously. To feel well. What a gift!  I woke to the PA on duty startling Mason and me awake at 7am to introduce himself. Nice guy but I was a bit taken aback at the time.  Meds, Vitals periodically all day.  After most of a dare-to-say fun morning together, Mason left to go home, shower, and go in to work late - what a blessed mom I am!  Andy was here much of the day which is always a comfort. I had an echo cardiogram in my room.  Nolan came to hang out in the afternoon. We had some great conversation time before Cameron brought a couple ladies (one being 86) all the way from our area which is about an our away because they had asked to come pray for me. We got lots more than that. The 86 year old is a very prolific published author, podcaster, and I might describe as a radio host pastor. I know that's not the right term but more of my description of her. Her name is Dr. Joan Boney if you want to look her up. Her primary message is that "to know Scripture, we m...

It's a nice morning to wake up feeling well.

About 11pm last night, the 22-hour chemo bag was finally hooked up and running. We've had a terrible time with this new port I had put in to replace the old one. Nurses were having more and more trouble "accessing" it. I'd had the old one for nearly 7 years so I decided to get it replaced. This may have been a mistake.  We tried to watch a movie before and after, but sweet Mason and I (our youngest who spent the night here with me) couldn't stay awake for it. We got to sleep pretty soundly until 4:00 vitals. And we were really startled awake at 7am by PA Brenden, who just "wanted to introduce himself."  We are both thankful for the solid patches. I was worried last night because they gave me 120mg of Prednisone pretty late, which can make sleep fitful or impossible. The other handfuls of drugs they are giving me counteracted that and I slept great in between the medical visits.  I put the word, "Wellness" on the bag. It all started with a quote...

Day 1 EPOCH - Hurry up and wait

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 We used the first part of the day to pack an embarrassing amount of stuff "to make me comfortable." When we arrived at 2:45pm for the agreed upon time, there was no bed in my room. No big deal. They all seemed embarrassed. Really - no big deal. People in and out as Andy and I hung around. Mason came with beautiful flowers but was chastised - they are a danger to those whose immune systems are compromised. (But mine is not at this point.) They were nice and let them stay awhile but he took them to his car.  It is 8:30pm and I am still not hooked up to chemo. There have been lots of problems getting my port accessed...blah blah blah.  My son asked an interesting question I should address. Why the urgency in the last couple days.  I was on the clinical trial drugs that seemed to help me with the rashes (I still have them but the itch is manageable), the swollen lymph nodes (although I still look weird), and the need to take Prednisone to manage the swelling hands, join...

Protocol put off for a day - going into tomorrow 24/7 X 5 days.

I just love when doctors make promises like, "I'll call you tomorrow." I'm sure they have good intentions but I don't think those kind of promises are usually kept.  I fell asleep this afternoon, worried I might miss him. His nurse called to see if I'm ready to get started. I am just so dead tired, painful muscles, etc.... I just want to feel better. I'm hoping this does the trick and I'm also hoping I'm not trading one set of issues for another.  The protocol is called EPOCH for these 5 days. When a person first starts chemo that kills off cancer cells quicker at first, it can be very toxic, especially to the kidneys. That is why they slow down the rate of giving some drugs and use a lot of hydration. My kidneys also didn't like the clinical trial drugs so they are being very cautious.  I'll be checking into Anshurz Cancer Hospital tomorrow afternoon. The nurse encouraged me to bring things to make me comfortable. Books, own jammies and co...

Ya, I'm starting cytotoxic chemo tomorrow.

 The MD/Researcher, Dr. Haverkos, called this afternoon to talk about yesterday's PET scan. It appears the first couple months the drugs held the disease at bay but the last two months, it has take off. After asking other questions I don't have the energy to share right now, he suggested I go into the hospital tomorrow and start Brentuimab and CHP. The letters all stand for drug names.  Again, I'm struggling to stay awake so I'm not including as many details right now.  The time in the hospital is a stretched out series of IVs, instead of the usual doing it all at once, to protect my kidneys that already seem stressed. The first round of chemo (I will do 6) kills off the most tumor load, so stretching it over a week is a good idea.  After 2 months, we will do another PET scan to see how we are doing.  I feel like it is time to get after this and see if we can actually get it into remission. He mentioned a Bone Marrow Transplant, which I hope we don't have to do....