9/2/2017 - I have been diagnosed with Myelodysplastic Syndrome (MDS) as of Thursday, 8/31. MDS can occur when blood-forming cells in the bone marrow are damaged. This damage leads to low numbers of one or more type of blood cells. MDS is a very rare blood and bone marrow disorder and in my case, caused by the chemo treatment I received for breast cancer in 2009. I have been referred to the Colorado Blood Cancer Institute (CBCI) for further treatment options. In the mean time, I have decided to move forward with a very "light" type of outpatient chemo that will hopefully prevent MDS from developing into acute leukemia. The oncologist at Kaiser believes this cancer is treatable, but not curable at this point. Other treatments like a bone marrow transplant and different types of chemo have been discussed as treatment possibilities. I am waiting to hear from CBCI about scheduling an appointment to discuss these further.
9/8/2017 - Courtney took me to CBCI today and the doctor said a bone marrow transplant might be an option for treatment. He states this would be a cure, not just a treatment however, there are many risks with a bone marrow transplant and the recovery in the hospital. Quality of life, comorbidities and mortality is unpredictable. Nothing can really happen until I complete 2 months of the outpatient chemo (starting 9/11) to see if my bone marrow blasts come down enough for the transplant.
9/19/2017 - My oncologist and CBCI doctor have decided that 2 weeks of this very light chemo will be most beneficial for lowering the bone marrow blasts to where a bone marrow transplant is a possibility. The lower the blasts levels, the (hopefully) better transplant outcome. I started my second week of this chemo yesterday and doing well. I am tired for the rest of the day after treatment, but in general feeling ok. I will have 2 weeks off of chemo and then start the second round of 2 more weeks. After that, I will have another bone marrow biopsy and see where the blasts are. Thanks for all the love and support!
10/8/2017 - I received a port in my chest on Friday and it is healing well; it is sore and a painful but part of the process. The port will making receiving chemo and giving blood for testing a lot easier. I start my second round of chemo tomorrow along with a couple appointments with my oncology team and doctor. If all goes to plan, I will have another bone marrow biopsy 2 weeks after this round to see if my bone marrow blasts have gone down to a point where I can have the bone marrow transplant. I have been feeling very tired lately, lots of changes with trying to sell my condo, but still positive about moving forward and fighting for a cure. As always, I really appreciate the social visits and food drop offs :-).
10/16/2017 - After the visit with Dr. Mayer this past Monday, we know that the chemo is doing its job because there are no bone marrow cells in my bloodstream. This is good news and a sign of progress. The doctor also wants to do 3-4 rounds of chemo before testing the bone marrow blasts instead of 2. This will give me the best chance before transplant so it will be a few more months before getting tested. Each round of chemo is 2 weeks on and 2 weeks rest; 1 month/cycle. Last Friday I had a blood transfusion to boost my red blood cell count. Later that evening I had a fever and Courtney and Ben took me to the ER to make sure everything was ok. The ran tests and my fever went down and I was released.
This week begins the second week of the second cycle. CBCI has confirmed that Myrna (my sister) is not a match for transplant but someone in the donor bank is! That person is being tested further to confirm a match.
My condo went under contract within a day and I will be closing on 11/10 and moving in with Courtney and Ben. We all will be moving further east in Highlands Ranch if all goes well. Thank you for the good vibes and thoughts!
11/6/17 - Today begins another round of chemo, 2 weeks of daily treatment. I might have a bone marrow biopsy after this round to see if I am ready for a transplant, however my doctor could say differently today when I meet with him.
The move over the weekend went well and I am so lucky and grateful to have so many great friends and family who were willing to help carry boxes and move me in with Courtney and Ben. Our house hunt continues to find something that suits everyone's needs better than where we are now. THANK YOU again to everyone who came to help move and carry everything down 3 flights of stairs. You are appreciated!
11/18/17 - After 9 days in the hospital for an infection, I am back at home at doing ok. Because I don't have enough white blood cells to fight infection, it took some time for the IV antibiotics to work. Courtney is giving me my injections and antibiotics through my port daily at home now. My energy levels are still on the lower side so I am trying to rest as much as possible. Courtney and Ben found a house and we are all set to move on 12/16 a little further east in Highlands Ranch. Thank you for the well wishes while I was in the hospital! I resume chemo the Monday after Thanksgiving. I hope you all have a wonderful holiday with family and friends.
12/31/17 - My recent bone marrow biopsy results are in! I needed to be under 0.5 (unsure what is measured) and it was 0.0! It was great news and came right before Christmas, making it a wonderful present. I have an appointment with CBCI on Thursday, 12/4 to discuss the next steps and planning the transplant. It will be a trying process; 20 days in the hospital and then 100 days at home under 24/7 watch following the transplant. I have moved in with Courtney and Ben in our new house and slowly making updates/fixes to make it my own. The next exciting update will come next week! Happy New Year and best wishes to everyone for 2018!
For more information on MDS, visit:
https://www.cancer.org/cancer/myelodysplastic-syndrome/about/what-is-mds.htmlWe are using Caring Bridge to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting and all of your love and support!
