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!!

Tuesday, December 8, 2020

Looking for the on switch

It has been about two months since I finished treatment and while I don't feel as bad as I did the first few days post chemo, I don't feel great at all. I sleep constantly and when I am not sleeping that is all I want to do. I keep waiting for the day I wake up and have energy and don't have to will my body out of bed. It is as if my on switch is stuck off, or worse yet has broken off... 

I also get headaches frequently that knock me out (if I don't lay down and take Tylenol soon enough I end up extremely nauseous) and regardless of how many times I go up and down the stairs I am short of breath every time.

My bone marrow biopsy results were great with no evidence of cancer. Since that is what they were at the chemo midway point I would have been very upset if I had done 3 more months of chemo and they were worse. I'll have my next bone marrow biopsy in April which will be the real test to see if I'm still at zero or already showing signs of hairy cells coming back.

My oncologist locally did a lot of blood work last week and I was hoping I was low on iron, or something like that which is a pretty "easy" fix. Unfortunately nothing was far enough off to necessitate any time of treatment. My labs all looked "good". It could just be that I am just 2 months out from chemo and after 5 courses of treatment in 8 years I am not bouncing back quickly. 

My oncologist's office suggested I follow up with my GP... which left me feeling like "well we fixed the cancer you are not our problem now."  When I called to get an appointment with my GP I have enough symptoms that overlap with covid-19 (which I am sure I don't have because I still have no viral immune system beyond medication I take daily to give me some defense and I have had these symptoms for months) that I had to get a covid test today before my GP will see me. It was easy and quick here and supposedly should have results back in 48 hours. So I can add that to my medical bingo card.

It is frustrating to not feel good and feel like you can't get a doctor to work with you to feel better. Hopefully I can see my GP next week and he can help me figure out how to accelerate my recovery and figure out how to regain some modicum of energy before the holidays!

Monday, November 2, 2020

Life Post Chemo

Last Monday I still had to go see my oncologist and have labs done but I did not have to follow that with chemo for the first time in 6 months. When my doctor asked me how I was feeling my response was very happy to not be getting chemo. 

I thought I would magically feel better last week but instead the dex taper was longer on my last cycle, the let down bigger and I think my body in general let down after crossing the finish line. I am feeling better this week (e.g., fewer headaches), but I still have chemo fatigue, mental fog and some other lingering side effects. The worst is definitely behind me and I am trying to start to build back my strength and energy.

I head back in to the doctor in two weeks for a bone marrow biopsy. It should show no cancer since the halfway point one did, but I guess if it does that is not good and will need to start thinking of what is next sooner than planned. I'm assuming it will be a non event. I have another bone marrow biopsy on the calendar for April and am also assuming that will be a non event. It is usually the one year mark where it becomes clear it is back and what trajectory I am on.

My big accomplishment over the last couple of weeks is finally cleaning out my closet which has been a dumping ground for awhile. Katt has wanted to help me do it for literally years. I finally succumbed and it was liberating give away a lot and to get everything organized. I am no longer scared to go into my closet! If I can get up the energy to take on sorting through pictures this winter that will be huge.

Nothing else new here. Chad is still working from home. The girls are still doing school online, and we still all like it each other. So all is good!!

Sunday, October 11, 2020

Dexamethasone, Facts and Voting

My chemo side effects have been getting worse after each round of treatment so my doctors at NIH and here agreed a few days of oral steroids were warranted and should help. All throughout this course of treatment I have been getting two IV steroids on the day of my treatments (dexamethasone and solumedrol). For for the last couple of rounds I also been back on my old friend, oral dexamethasone, which has been in the news given a certain President who has covid-19. 

The first time I took dex post-treatment it kept the side effects from getting worse. While this is not a resounding endorsement it was an improvement. This last time around it definitely helped mute the side effects the first couple of days but when I got to Thursday and started my taper off the steroids and by the evening I was beet red and looked, and felt, like I was having a bad allergic reaction. I was a bit freaked out until I realized I'd starting tapering and it was the chemo side effects popping out on a delay. These delayed side effects continued through the weekend and included surprises like laying down last Sunday at 1 for a headache planning to rest for 30 minutes, only to wake up at 5:30 pm and realize I had slept the day away (and barely was able to wake up until 9pm).

Facts about dexamethasone...

- It was first approved for use in 1961. It has been around for a long time so it is well known to doctors and the side effects are well documented.

- It is a potent, long acting steroid. It is about 6 times stronger than predisone that is what doctors usually prescribe for poison ivy, bronchitis, etc. and dex stays in your system longer.

- It is an anti-inflammatory drug. One of the reasons it is given with cancer is to suppress your immune system response (in my case to chemo drugs) and this includes suppression of  fevers. So if your temp is normal and you are taking a steroid that is the expected response and the steroid may be masking a fever from an underlying infection or illness.

- You need to taper off of dexamethasone. If you stop abruptly it can be very dangerous if your adrenal glands do not "kick in" immediately because they stop producing cortisol when you are on the medication.

- Irritability is a common, documented side effect of dexamethasone.

Having had a lot of personal experience with dex it makes you feel much better than you would otherwise when you are on it. You have a rush and feel like you can do a lot more than your body would feel like otherwise. When you come off of it, you feel it, and you can have lingering side effects.

I have never been on steroids without being irritable (ask my family) and erratic. I am barely trusted to make sure I turn off the stove and oven, much less lead a country.  Understanding how much of this medication someone has received and when they will be off of it are important pieces of medical information.

This brings me to the upcoming election. I firmly believe American needs a President who unites us versus divides us. We all want the best for our families. I also believe that diversity of thoughts and opinions is helpful but spreading lies and misinformation is not. We have gotten to the point there is not alignment to facts and data which I really struggle to understand.  I am tired of a President who constantly lies, bullies and is a general horrible role model, much less a horrible leader. 

Chad and I were going to vote by mail but we decide to go in and early vote. We had to surrender our mail in ballots and we were really impressed with the social distancing and infection control precautions in place at our local Board of Elections. I feel strongly this is the most important election of my lifetime. I have written postcards to turn out the vote, made calls, given money and voted. Please think deeply about your choices and who is best for leading our country in this unprecedented time. 

I think the question Susan Page posed to Vice President Pence this week (that he did not answer because there is no defensible answer) is an important one, which was something to the effect of "how do you explain the fact that the US has over 210+k deaths from covid-19 which is ~22% of the world's fatalities and we represent only ~4% of the world's population." Please make a plan to vote and consider this fact when you make your decision.

Tomorrow is my last day of chemo. I am going to ask about slowing the dex taper and I am so excited to feel better for more than a few days I can't explain my excitement! 

Sunday, September 27, 2020

RBG and Gender Equality

I have been thinking a lot about RBG's death and her legacy. I did not realize that so many rights I have were new to women in my lifetime. By the age of 22 I had my own credit cards, a car and an apartment without male co-signers. I have never thought of that as revolutionary until now even though those changes came for women in the US after I was born.

The university I attended only became co-educational a couple years before I was born. I would suspect if I went back and looked all of the schools I applied to have similar histories, yet by the time I went to school they were 50/50 female/male. Integrated, co-educational institutions are what I grew up with thanks to RBG and others and I definitely took that given for granted.

While at university, the fliers for getting a credit card were everywhere for men and women. As the poor college student I was, who was an Econ major, I knew I should build credit by using my credit card and paying it off monthly and I needed the cash float.

When I graduated from college, I had a good job lined up. With the credit I had established and the job I had lined up, I was able to buy (or rather finance) a car on my own. My first car was a Toyota Corolla that I put no money down on and charged the tax and title fees, but I had a car, a credit card and I had a job that would provide me with income to cover the monthly payments, and my rent and other living expenses.

By the time I got married a few years later I added my husband to my credit cards and we consolidated our accounts into my bank account (since I knew how much was in mine and he did not know what was in his and both were equally low balances).  Something that would not have been possible the decade before I was born.

I was lucky that I chose a place to work that strove to be a meritocracy. However, Corporate Finance and Corporate leadership are male dominated. Women last year held a record high number of CEO positions at Fortune 500 companies and still just 7.4% Fortune 500 CEOs were women. Yes, that is right, less than 10% still - 50 years after higher education opened up to women. While my employer worked deliberately to improve retention and promotion of women across levels, when I left after 20+ years the percent of woman at each level in Finance and Accounting was similar to when I joined the company.

Over my career, I was regularly the only woman in meetings. Around the year 2000, one meeting sticks out in my memory.  We were living in Geneva, Switzerland at the time. I was the only women in a meeting of about 15 people to get approval for the launch of Swiffer in the Balkans. The President of the region turned to me and asked, "since you are a housewife, I am curious what you think about this launch reco".  My first reaction was to think I am a Finance Manager and since I am here working full time I am most certainly not a housewife. I quickly realized I should take advantage of any opportunity I was given to share my business thoughts and establish my credibility as a strong thinker and leader which I did, but I felt like what I was bringing to the table intellectually and professionally was secondary to my assumed role as the primary house cleaner. 

Like so many, I admire and am thankful to Ruth Bader Ginsburg for her legal acumen, her strength, her perseverance and the changes she enabled that I have benefited from.  I read an article recently where someone had asked RBG what number of female Supreme Court justices she thought would show that women had reached equality. Her response was 9, and that men had filled all 9 roles for a very long time. I have been conditioned to think about equal as 50/50, but she makes a good point: history has not been equitable.  I also admire RBG's vision and ability to think expansively about equality, without which I think far less progress would have been made towards equality in many different areas. 

I am down to just two more treatments, so in slightly more than two weeks I will be finished with chemo. I'm looking forward to feeling better and having energy and figuring out what I can do with it to drive positive change.