Monday, May 3, 2021

Still processing...

I am not sure where to start and honestly am still processing my recent test results. For the first time ever at 6 months post treatment there are no signs of the leukemia coming back already in my bone marrow. This is good news and I should be jumping for joy, but the treatment was too effective and it took the good out with the bad and my immune system is still MIA. 

My doctor at NIH said I could try to get the covid vaccine and he would analyze my blood after each dose to see if I develop any antibodies but he is not optimistic because I have "no normal B cells" and my T cell levels are not great. I had been assured that 6 months post treatment should be plenty of time for my immune system to rebuild. I had made plans to go see my mom and give her a hug for the first time in two years. I want to meet my new niece who was born last November. I was planning to help Katt move into college. All of those plans have hit a hard pause. I could still do some, or all at some point, but am feeling dependent on the rest of my fellow humans to get vaccinated and build herd immunity - and given the last year I am sadly not confident enough people will get vaccinated to get rid of the coronavirus. So instead of being ecstatic about no leukemia I have been bummed out that my life will still be on pause as I watch everyone else get vaccinated and return to eating at restaurants, seeing friends and families, and taking a vacation. As I have told my children, I will be happy about this soon because my test results do have some very good news in them, but need to be sad about not being able to return to normalcy just yet. 

I went ahead and got my first dose of the Pfizer vaccine about 10 days ago. Of course, I have the worst of both worlds. I had side effects because I guess I have the part of the immune system that responds initially but not the part that remembers when you come in contact with it later.  My fingers, toes and everything are crossed all get something front it, enough I can safely do a few driving trips to see my fully vaccinated family members. Everything is on pause for the next month or so and then will see if my body responds and remembers the covid vaccine and I am realized to wander a bit further or not.

Friday, March 5, 2021

Proud Parents

We started this year nervous, but hopeful. In January, my parents were able to get their first dose of the covid vaccination and we were all cautiously optimistic of better times to come. Then February arrived. 

My dad woke up one Tuesday morning and thought his back had gone out. Unfortunately, my sisters and I have all fallen victim before to muscle spasms in our back and my father thought that is what he had when he could not get out of bed and his lower back was in a lot of pain. My sister who lives in their area road to their rescue and picked up the prescription his doctor had called in and helped them get groceries and helped my mom. My mother's Parkinson's has progressed to the point of needing someone to help her (or at least spot her so she does not fall) round the clock. The next day my mom called the home health care agency they had been using for help once a week to step up the amount of help they were getting until my father felt better.

Unfortunately, by Friday my dad was not feeling much better and he was confused and my sisters and I, and our mom noticed he was slurring some of his words. We thought maybe he had a mini-stroke. We had been trying to get him to go to the doctor or hospital since Tuesday. On Saturday morning, my dad finally called his cardiologist who insisted he get to the hospital. Once he was there we quickly learned his heart was failing and his liver and kidneys has sustained damage already from his heart not functioning well. Luckily, my father was alert on Saturday and we were all able to FaceTime with him and my sister, who lives in Florida, was able to get a flight right away and get in town. Sunday night just as the Super Bowl kick off happened my father died. 

My dad was 82 and had a long wonderful life. Given his age I had thought about the possibility of him dying many times before but that did not diminish the overwhelming sadness the first few weeks. I felt like I was in a fog. The world was moving on - school was not canceled, work continued, my family needed meals, clean clothes, etc. but I was wrapped up in grief. It was surreal that the world was continuing without my father in it.

My father loved my mother and my sisters and me totally and completely. We always knew were loved so very much, and that my father was extremely proud of us. At many points in my life my dad's full love and pride in me could be a bit embarrassing. The older I have gotten the more I have realized how truly lucky I am to have parents who have loved me, supported me and always made it clear how proud they are of me. 

We have lots of good memories of my father, and grief for me comes in waves. It rises sometimes when I least expect it, but it recedes with time. Each week the happy memories over take the sadness a bit more. My sisters and I are glad we have not waited to get together as a family and celebrate. We had a big 80th birthday for my father which was a wonderfully, happy event, and then a year later we all got together with our cousins and their families and my aunt and uncle for a week at the lake. My dad's large smile, presence and laughter roared through these events. Love you, Dad, you will be missed!

I hope my daughters feel as loved as I always have by my parents. Chad and I are so proud of both of our girls and also hope they know that. On top of all that Katt has going on as a Senior in high school she has been taking part in the Leukemia & Lymphoma Society's (LLS) Student of the Year 7 week fundraising campaign and we are very proud of her for doing this! 

We have all been overwhelmed by the outpouring of support from our friends and family. Thank you all so much! I've loved seeing Katt connect with my friends and our extended family that she would not normally email and connect directly with. She has gotten a better appreciation of the supportive, and loving community we are part of. My father's mother had leukemia when she died and so it is something that runs in our family. 

Katt's LLS campaign is in its last week. Thank you to everyone who has given!  Katt is hoping to have more than 100 different donors and she is getting close to that goal. If you are able to help her reach that goal below is the link to give. We are already so proud of what Katt has done to help raise money to work towards more treatments and cures for blood cancers, and I know my dad was proud of her too.

Sunday, January 3, 2021

It is finally 2021

Like many others, we all breathed a sigh of relief that 2020 was finally over and we are sincerely hoping that 2021 is better for the world.  

The first day of the New Year started with freezing rain, ice and snow so we were glad to stay home all day. The second day of the year came with news that Katt's head swim coach, who she has really liked and learned a lot from, is leaving. So not the greatest start but we can take these minor bumps as long as we stay healthy.

I am finally starting to get some energy back. I am no longer falling asleep randomly during the day and I have not had a headache in a few weeks. I am no where near 100% but it is so nice to start to feel better. 

I thought I'd be exhausted from the pace of everyone being off from school and work and would be ready for everyone to head back when winter break was over but I am not looking forward to the return to those schedules this week. While we would have loved to have seen family, we have had one of the best winter breaks ever. It seems like spending time together all this year has made us want to spend more time together and it has been great. 

Hope 2021 is treating everyone well so far!!