When the rubber meets the road

 Well, the good news is I am in remission for the first time since being diagnosed nearly 8 years ago. I was to have 6 sessions of chemotherapy since beginning in July. I feel, looking back, that the 1st 1 - 3 sessions did many positive things. I no longer have high blood pressure, which they told me could improve with chemo and immunotherapy treatment. All the swelling of lymph nodes went down and all the inflammation I had in my neck, legs, feet, wrists, etc.... went down. I've lost 45 lbs, much of which was inflammation, I am certain. I lost my desire for sweets, wine, and big meals which has undoubtedly contributed to the weight loss. On the other hand, I often don't feel great and I have pretty significant neuropathy in my fingers and toes and left food. The 4th chemo session was so easy that I have joked that I wonder if they even gave me any drugs. My white blood cell count did plummet again, making it necessary for me to isolate for 10 days until it recovered. The 5th c...

 Chemo #4, after which I posted last time, I felt really good. I said to a few people, "If I didn't know better, I'd question if they even gave me chemo and immunotherapy." I didn't know if it was because I had increased my thyroid meds, gone on the anti-anxiety/anti-depressant drugs, or what. I thanked God so many times for that month or so. I felt free to live (even when I needed to isolate for 2 weeks).  I have Chemo #5 a week ago Wednesday and it has been the complete opposite. I have just felt lousy. I do a bit around the house or whatever, and then I need to lay down. I have joint pain in my hips that radiates down my thighs, especially when I try to sleep, because I sleep on my sides. I have a ton of mucous that gags me and has made me vomit (I've tried the teas, anti-mucous drugs, herbs... nothing seems to help.) I've had this before and it finally resolved but it's distressing. The neuropathy in my feet and hands is worse. I bought some balm b...

 Thankfully, my blood counts are finally normal. We met with the NP yesterday and I asked to postpone my next chemo for a week so I can be OK for Thanksgiving at which all our kids and grandkids plan to be together. I hope this doesn't effect the planned bone marrow biopsy and appointment with the T Cell Lymphoma oncologist, Dr. Haverkos. The appointments have had to be rescheduled twice because of the infections.  If the bome marrow biopsy shows no cancer cells, I hope to not have the last chemo infusions and plan to opt out of the transplant. If they find cancer cells, as they did the last time, making the lymphoma stage 4, I'll have to reevaluate.  Praying. xoxo

 We woke to a spectacularly bright beautiful day. It's going to be sunny all day and in the 50s; we've gotten more than 2 feet of snow over the past 3 days. They were good days to stay in. Tuesday I felt so normal after having chemo the previous Wednesday. I met with my Al-anon sponsor and friend and we spent a fun afternoon with our grandkids. I went in for my bi-weekly labs and was stunned to fund out I was running around the world with pretty much no immune system. My neutrifil count, which is essentially my white blood cell count had gone from high the Friday before the almost nil. It was .5 when it should be at least 4.  The doctors office called to tell me I should isolate and watch for signs of infection. I woke the next morning with a sore throat and runny nose but no fever. I have been feeling so good; it was quite a surprise.  I enjoyed the 3 days of almost constant snow.  Friday I did labs again and was again surprised that my number had only gone to .7. T...

 What a blessing to have a really nice day and be able to fully enjoy it.  Sitting in the chemo chair the other day, I realized the anxiety I've been struggling to manage had lifted. It just wasn't there any more. It's a bit ironic, because it is natural to think I have anxiety because of the treatments and my fear that the side effects could get worse as we go forward. But it was gone and I knew it.  Anxiety is so different than worry. Worry we can controlled, thought through, rationalized. Anxiety is helped by deep breaths and other coping techniques, but it feels more physical and out of immediate control. I have gone on a medication called Cymbalta and we just raised the dosage to 30mg about a week ago. Maybe it is working. I don't really care how, but I know it is an answer to prayer.  Anxiety is exhausting and not in line with healing.  I am grateful to have been given a reminder of what mental distress feels like. It makes me much more compassionate. I ne...

 The procedure to laser the kidney stones was easy because of anesthesia. I woke to the strange reality that I had strings hanging out of my urethra and the doctor telling me to take the stints out after 5 days. The stints are there to keep the urethras open after much manipulation and swelling. Also swelling in the kidneys. After looking it up on YouTube, I found the stints were about a foot long, reaching through the bladder into the kidneys. They have a little curl in them that holds them in the kidneys until they are pulled out. After 5 days, I was ready to have these out as they caused cramping. I took a couple Ativan, waited 45  minutes, and pulled them out. Easy peasy. The urologist believes that my urethra was constricted, making infection more likely. He stretched it out to get the scope, camera, and laser in and feels this is the real culprit - not the stones.  I have felt so much better since then. No UTI symptoms. I feel virtually normal, like no lymphoma and ...

 After about a week of no UTI symptoms after the California ER put my on another antibiotic, I felt the burning, achy feeling again so we went back to the ER. They admitted me again, since we really don't have oral alternative anymore.  I have come to really hate being in the hospital.  I was essentially in there to get IV antibiotics that only took 1 hour a day. I was there 3 days until the Infectious Disease Specialist got me set up to do them at home. He also decided that the thinks the recurrent infections are from latent kidney stones and that we could see the clear up if the stones were removed.  UC Urology was called I and I have a procedure Tuesday where they go through the bladder into the kidney and use stints and cameras and lasers to blast and remove the stones. They leave the stints in from 2 days to 2 weeks. I am so not looking forward to this. They use anesthesia for the procedure but it sounds uncomfortable when you wake up.  Hopefully this will ...