This week flew by and we are looking forward to a nice weekend. Emma has a school dance. Joseph is once again at Boston university for a track meet on Friday. Jim plans to cheer him on.
Medical update: Today's"normal" clinic visit turned out to be anything but... Jim and I met with Dr Avigan to discuss the next phase in my treatment. The clinical trial went okay with my leukemia staying stable. Yet stable is not good enough and we are moving to the next phase of treatment: another round of toxic chemo followed by a donor cell infusion. The chemo requires hospitalization. Today I had a fever of 101 so Dr Avigan decided to admit me. Instead of heading home in a day or so and starting chemo sometime next week, we decided to start the chemo during this unexpected hospitalization. So here I am and I have to say I am glad to get the treatment underway. Will start chemo once all infections have been treated which will probably be Fri afternoon or Saturday. The chemo will be 5 days and I'll be in the hospital for some days(hopefully not many) afterward. Will keep you posted and thanks so much for checking in. Love Maureen
Thursday, February 25, 2016
Sunday, February 21, 2016
Weekend Update February 21
Coming off a nice end of the week and weekend. Still get wiped out at night and sometimes during the day but through the grace of God and some decent nights rests I have enjoyed some wonderful days. This week I had lots of company in the clinic. Emma came with me a couple of times and my dear friend Debbie drove me in Thursday. We had such a great visit and I was kind of wiped out that day so it was so helpful to have Debbie bring me in. This weekend we saw Joseph at a track meet held at MIT (one of his competitors was a friend from grade school who goes to Trinity - we caught up with Jack and his parents which was a treat). Joe and Jack both did well and this time we were actually able to take Joe to lunch. It was so nice to have the four of us eating and laughing and catching up...plus Saturday was a beautiful day to be walking around the campus of MIT. After collapsing last night (always pay the price for a busy day) I got together with my college roomie Karen this morning whose daughter is looking at schools in the area. We had a wonderful breakfast/conversation that left me feeling blessed and confident and so very fortunate to have such amazing friends and family.
Medical Update: Here is my tip for the day...if you are having complex treatment for an illness where the medications have multiple side effects and the illness itself can go in multiple directions, tell your docs EVERY weird, odd, seemingly bizarre symptom you are experiencing. I am at the clinic today (Sunday) and mentioned to my nurse my tongue felt thick and it brought tears to my eyes when I brushed my teeth due to the stinging sensation - how weird and is that....anyway one of my favorite Doctors (Dr Joyce) came by and let me know I have no tastebuds on my swollen tongue and have sores in my mouth due to GVHD (graft vs host disease) of the mouth which they can treat topically giving me some much needed relief. Also, GVHD at small levels like this is a good thing because it shows my immune system is working (will spare you the details as I've talked about this in the past). This is a HUGE mental boost for me knowing my immune system continues to be hard at work. Will probably go to the GVHD dental clinic on Tuesday (who knew there was such a thing). I meet with Dr. Avigan on Thursday and will discuss the progress of the clinical trial as well as next steps. One option is my staying on the trial for another 3 week cycle beginning a week from Monday. Will keep you posted and thanks so much for checking in!! Love Moe
Medical Update: Here is my tip for the day...if you are having complex treatment for an illness where the medications have multiple side effects and the illness itself can go in multiple directions, tell your docs EVERY weird, odd, seemingly bizarre symptom you are experiencing. I am at the clinic today (Sunday) and mentioned to my nurse my tongue felt thick and it brought tears to my eyes when I brushed my teeth due to the stinging sensation - how weird and is that....anyway one of my favorite Doctors (Dr Joyce) came by and let me know I have no tastebuds on my swollen tongue and have sores in my mouth due to GVHD (graft vs host disease) of the mouth which they can treat topically giving me some much needed relief. Also, GVHD at small levels like this is a good thing because it shows my immune system is working (will spare you the details as I've talked about this in the past). This is a HUGE mental boost for me knowing my immune system continues to be hard at work. Will probably go to the GVHD dental clinic on Tuesday (who knew there was such a thing). I meet with Dr. Avigan on Thursday and will discuss the progress of the clinical trial as well as next steps. One option is my staying on the trial for another 3 week cycle beginning a week from Monday. Will keep you posted and thanks so much for checking in!! Love Moe
Tuesday, February 16, 2016
Update February 16
Emma is enjoying her February break. Today she joined me in the clinic to the delight of the nurses who have come to know my family well. Jim, Emma and I saw Joseph this weekend at Boston University. Bowdoin participated in a track invitational on Saturday. Joe's event was early so we thought we might take him to lunch - Joe had other plans joining some high school friends who go to school in the Boston area. We were able to fund the lunch as Joseph was short on cash - so there was that...Anyway, it was great to see him and he is in town again this Saturday for a meet at MIT. Come by if you are in the area! Now get ready all my Lake Catholic High School pals...on Sunday Emma and I saw Pippin at the Boston Opera House. It was amazing and the words to all the songs came flooding back - what an amazing show (and my good friends at Lake truly did the play justice back in the 80's!!) Many of you may remember 5 years ago Jim had a successful surgery to remove a tumor inside his spinal cord. He saw his surgeon today for his annual visit and was given another clean bill of health. He was given some new treatment plans for the chronic pain that persists and we are hopeful that will give him some more relief. Finally I had some family in on Monday with a visit from cousin-in-law Jane and my Aunt Debbie. It was great to have the company in the clinic and we had a delightful visit.
Medical Update: The trial continues into its third week. We've seen some encouraging signs and await the final word on overall success/next steps this coming Monday. Each day I get the trial drug via a one hour transfusion (followed by one hour of observation) and blood/platelets as needed. Today I had an extra treat of a bone marrow biopsy. This is part of the clinical trial protocol. Overall I continue to feel strong and healthy (strange word I know) most of the time. Evenings are consistently kind of ich so I generally call it an early night and by morning I am ready to attack the day. Look for an update early next week re: next steps - thanks for checking in! Love, Maureen
(Oh and Happy Birthday to many of my Columbus family. Three of the four Didays (Kate's family) celebrate birthday's in February - Happy Happy to Kevin, Kathryn and Nora. Also we remember Eileen on her birthday this past Monday. We love you and miss you.)
Medical Update: The trial continues into its third week. We've seen some encouraging signs and await the final word on overall success/next steps this coming Monday. Each day I get the trial drug via a one hour transfusion (followed by one hour of observation) and blood/platelets as needed. Today I had an extra treat of a bone marrow biopsy. This is part of the clinical trial protocol. Overall I continue to feel strong and healthy (strange word I know) most of the time. Evenings are consistently kind of ich so I generally call it an early night and by morning I am ready to attack the day. Look for an update early next week re: next steps - thanks for checking in! Love, Maureen
(Oh and Happy Birthday to many of my Columbus family. Three of the four Didays (Kate's family) celebrate birthday's in February - Happy Happy to Kevin, Kathryn and Nora. Also we remember Eileen on her birthday this past Monday. We love you and miss you.)
Wednesday, February 10, 2016
Update February 10
Kate and I had a wonderful visit last week. Our time together centered around daily clinic visits but we had the evenings here at home and enjoyed time with Emma, Jim and Guinness. Emma said Guinness was in heaven because there were 'two' of me (strong similarities between my sister and me). Very grateful for her comfort, company and help! Also had a lovely visit with cousin Margien on Friday and several friends came by to watch the Superbowl on Sunday.
Medical Update: Last week and into this week I am receiving daily infusions of a clinical trial medication designed to destroy cancer causing cells. It has shown great promise in the lab and I am in the final group of the Phase I trial. It is too early to tell it the drug is working on me - we are encouraged that the Leukemia appears to be stabilized (ie not growing). The next two weeks will give us a better sense of whether the drug is actually reducing the leukemia. If this treatment shows promising results we could continue for a couple more 3 week cycles. If we are not happy with the result we will move to another treatment. In other news rash persists and I am still fatigued as I need frequent blood transfusions. All easy enough to address.
Thanks for checking in!
Love Maureen
Medical Update: Last week and into this week I am receiving daily infusions of a clinical trial medication designed to destroy cancer causing cells. It has shown great promise in the lab and I am in the final group of the Phase I trial. It is too early to tell it the drug is working on me - we are encouraged that the Leukemia appears to be stabilized (ie not growing). The next two weeks will give us a better sense of whether the drug is actually reducing the leukemia. If this treatment shows promising results we could continue for a couple more 3 week cycles. If we are not happy with the result we will move to another treatment. In other news rash persists and I am still fatigued as I need frequent blood transfusions. All easy enough to address.
Thanks for checking in!
Love Maureen
Subscribe to:
Posts (Atom)