Rituxan Infusion- 4 consecutive Mondays

I thought I would give more information to you about Ron's infusion...for those of you who would like to know more about it! Niccole, Ron, and I left for AA about 7:00 AM today. His bloodwork today showed that the last week of meds have brought his skin GVHD under control. The T cells from his new bone marrow had been revved up and attacking his skin. The infusions over the next 4 Mondays should sustain his progress. Ron will also have a visit from his BMT doc and PA each Monday.
This first infusion takes 4-6 hours. It is monitored closely for any allergic reaction. This means starting it very slowly and checking BP, temp, heart rate, etc. every 15 minutes at first, then 30 minutes,and increasing gradually the flow of the med. The infusion is antibodies and called Rituxan. It will be effective for many months after the 4 week regimen and should help his skin and lungs (shortness of breath). He will also stay on a low dose of immunosuppressant but discontinue the steroid pills. (This is a good thing.) Of course, we are hopeful that this will be the balance needed to greatly minimize his graft versus host disease. We are getting closer.

Day #305 Since Transplant: Weekend Update

Sunday is slipping away, so I am blogging while Ron is napping. We made our Monday-Tuesday trip to Ann Arbor as planned. Ron's skin flare-up is not being controlled by ointments since he was taken off immunosuppressants about 6 weeks ago, so he is now back on a new immunosuppressant and steroids. (predisone). While he was at the clinic they also gave him an infusion of steroids to knock down the inflammation of the rash/blotchiness of his skin. He was also having changes in his mouth during this GVHD flare-up. He is scheduled to have weekly infusions to treat the GVHD, so we will be traveling to AA on Mondays for the next four weeks. Niccole is staying with us through July, so it will be great having another driver for these day trips. Ron's skin has improved some this week, but it is evident that he needs some additional treatment.

On Tuesday Ron had an appointment with a neurology opthamalogist. There is nothing that can be done to restore any of the vision in his left eye. He did give him a new prescription for his right lens.

We made a lot of progress unloading and sorting boxes this week. It was very hot and continues to be dry, so I am not planting anything else. It takes a lot of time to water my flowers and vegetables, so I have not watered any of the acre+ lawn. It is amazing how I have learned to say, "Oh, well." and just gone on. This week we also had to deal with no electricity for 24 hours and fraudulent use of my credit card. When I mentioned identity theft to my grandson, he said "oh, Grammy, no one could look like you." (I laughed and said now that is the truth!!)

Army friends from Florida visited today, and we had a good time and good laughs as we reminisced about army days and caught up on our families. Now we are taking it easy to be rested for the trip to AA tomorrow. Ron will see his BMT (bone marrow transplant) doctor on each Monday.
Love and best wishes to everyone,
Ron & Jan

Happy Dad's Day & Weekly Update

Happy Father's Day to all you Da-Das out there. We needed rain so badly here in our area that I don't think anyone complained that it rained on this special day. Ron continues to grind. His skin outbreak was widespread enough that I called the clinic for advice, so we are making a trip to Ann Arbor Monday and Tuesday. He already had had an opthamologist appointment scheduled for Tuesday afternoon. Now he will have his bloodtests on Monday and see his BMT doc. He has been off immunosuppressants for six weeks, so this has aggravated his GVHD of the skin and mouth. His eye appointment is 3-4 hours, and we may have a better understanding of the loss of sight in his left eye. We are both very pleased with his physical therapist who is visiting twice a week. He is primarily working on strengthening his hips and ankles which help with balance. He also is working on arm and shoulder strength. He walks mostly with the cane because either Niccole or I walk next to him. Ron also started his dental work this week. He has several teeth that need repair. Many ordinary events of everyday living are more special to us. Going to the little grocery store in Orland, IN, which is about 5 miles from home; seeing the same greeter in Meijer in Coldwater; doing lobby banking in Bronson, MI, with hugs and happy greetings from our friends who work there (yes, we continue to enjoy lobby banking and the personal touch from our home PNC.); watching the sunrise over the lake and watching the sunset out by the garden. The support of family and friends continues to amaze us. We are so grateful for all of you. I plan to at the least blog on the weekends to summarize our weekly events that bring Ron closer to his recovery. It is still a work in progress. Tuesday will be day #300 since his transplant.

On Monday Ron and I traveled back to Ann Arbor for bloodtests and two doctor appointments. His bloodwork results are good. His platelet count remains low, but everything else is in a normal or near normal range. The doctor did start him on medications for GVHD of his lungs because Ron has noticed some shortness of breath. They are asthma prescriptions. Ron's physical therapy has begun at home. He is working on balance and muscle strength primarily. His legs are MUCH stronger. She did recommend for safety reasons that when he walks alone, he should use the walker and not the cane yet. So there is a lot of work yet to do, but we are up to the challenge.

AOL and Blog

I have received assistance to stop my aol address from sending spam. I hope it works! Let me know if you receive additional spam, so I can take further action. So sorry for any inconvenience. My blogger dashboard changed, and it has not been allowing me to skip lines or paragraph. A giant paragraph is harder to read and offensive as a former English teacher. (one of my former roles)

Can you believe it's June???

It is wonderful being home. We are adjusting to how life at home has changed for us and at the same time, appreciating the wonders of nature that surround us. We have been entertained by kingfishers diving into the lake and hummingbirds,cardinals, finches, and other birds that come to our feeders. I have seen deer behind our garage, and we have seen swans and sandhill cranes fly overhead. Our families have pitched in to make it feel like home with gifts of outdoor flower pots and the dock put in. George continues to mow for us, and they arranged to have our Amish ladies clean before we arrived home. Amish girls came a few days ago in horse and buggy selling strawberries, so we have been eating huge strawberry shortcakes. We will get our pontoon boat soon. We have a few vegetables planted in the garden, and I have decided to plant a pumpkin patch again. I guess a lot has been accomplished in our first week at home, but my to do list remains long. I love yard work and gardening but don't want to do too much to maintain. Ron will go back to see two of his doctors in Ann Arbor on Monday. I can judge how well the day is going for him by whether he is walking mostly with his cane or choosing to use the walker at least part of the time. It is a challenge to entice him to drink enough fluids each day. Dehydration makes him feel weaker. We are both learning to make adjustments for the loss of vision in his left eye. If I walk to his left, I keep a hand touching him, but it is better to stay on his right side. His depth perception and reading with ease are diminished. He has progressive bifocals, but I have wondered if new glasses might help his reading. Graft versus host disease GVHD continues to be an issue. He has a variety of ointments to treat his flare-ups but is no longer on pills to suppress the rejection. He has GVHD of his mouth which causes dry mouth and occasional sores. He continues to use his steroid mouth rinse. Chronic GVHD can last for years. Ron's weight is staying in the upper 150s. He eats well and is encouraged to eat high calorie food and desserts, so the result of my stress and joining him in his high calorie food has not had a good result for me! I am so glad to be active again in the yard, gardens, and house. Ron does have some neurological symptoms as a result of 7 rounds of chemotherapy, the transplant, and the numerous meds that he has needed during his recovery. He will start a thorough evaluation and appointments in a neurological clinic in July. He has tremors that vary in intensity...mostly in his hands, and that has made it difficult to impossible to email or text. He has re-mastered using the remote control! He can barely write on some days; other days it is legible. All of that being said, the return of his personality has been quite remarkable. He sounds like himself again but has struggled with the loss of vision in his eye especially and worrying about what could happen next. That seems like perfectly reasonable reactions to what all he has been through. We never could imagined that he would have so many complications, but the leukemia continues to be in remission. Overall, I think he is doing quite well, and today Kitty Boy Blue has started napping with him at the foot of the bed. Good medicine. Love and good wishes to all of you. Bring on the summer! Ron & Jan