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.

Friday, September 11, 2020

Mortality Tracking

The other day one of the nurses at NIH called me. I thought she was calling to follow-up on some email exchanges about my last bone marrow biopsy and what NIH had received (and had not received) from my local lab.  The purpose of her call was to go over some changes in the consent form for the last trial that I was in since I am still technically in it for "mortality tracking" purposes. Well, I'm still alive so that is good for that trial. Morbid though to think about.

I asked the nurse while we are on the phone about getting a flu shot because I had read a few different threads online that suggested if you were taking rituximab, one of the drugs I am getting, that you should not get a flu shot. She clarified that it would not be harmful to get one, but it would also not be helpful. My body does not have enough of an immune system to react to what is in the vaccines to create any effective protection. That makes it that much more important that people around me are vaccinated to lessen their chances of getting the flu virus and passing it along to me. Please get your flu shots!

Rituximab stays in your system for several months after you stop receiving it so it continues to suppress your lymphocytes in your white blood cells that fight viruses for months. So we are going to be hunkered down this flu season for sure. 

The good news we talked is that this is the first time I have gone completely negative for hairy cells in both my aspirate and core samples from my bone marrow biopsy so hopefully will get a bit longer of a remission.  They are also going to give me a few days of steroids post treatment to help with what they think are drug side effects causing "inflammatory toxicity". 

Three more doses to go. I will not be sad at all to be finished with chemo!! 

Sunday, August 23, 2020

Hazy days

This protocol is feeling like both my pregnancies.... When I was pregnant with both of my girls I felt really nauseous in the first trimester, the middle was better and it came roaring back in the last trimester. 

I felt awful the first several rounds post chemo. Then the fevers subsided and I seemed to bounce back faster but the last couple of rounds have kicked my butt. In the days post chemo, I lay down for a short rest because my headaches and I feel more nauseous when I move around and I wake up 3-4 hours later. I was lamenting this the other day and Katt said, "mom, the only person that is surprised by this is you."

I thought it would get easier the further I got into treatment and it did for a bit and now it is definitely not easier. So much so I am debating whether I really need to do 4 more doses. I got my bone marrow biopsy (bmb) results back and they were great. There was no evidence of hairy cells, or any abnormal B cells. There was a small group of abnormal T cells but the local pathology report said there were not enough for additional analysis. NIH is doing their thing now so will see what they say. This is the third bmb in a row that has shown abnormal T cells and right now we are just watching them. 

The bmb was after 6 treatments and I have had 8. When they originally wrote the protocol for this trial it just had 8 doses. When I looked online at the trial outline when I started treatment it still said 4 cycles / 8 doses, but NIH said before it began they changed to 6 cycles / 12 doses. It is hard to continue to make myself sick when the test results come back with no evidence of cancer. I know that is just a sample and it is good to do a full sweep and make sure they track down the any remaining cancer but I am going to take it dose by dose. 

It does not help that they last time around I had to be stuck twice to do my blood work. Then my IV was started with no problem but halfway through the chemo (I am at the cancer center literally for 9 hours on chemo days), my vein gave out. How did we know? It felt like the IV was suddenly stabbing me sharply and repeatedly. The nurse pulled it and had to restart another one on my other arm. So my veins, like the rest of me, are feeling done with this.

So just 7 weeks until my last treatment and I am finished with chemo (for now) but it cannot go by quickly enough for me.

Thursday, August 13, 2020

Back to School (Again)

 Even though this has been a very atypical summer it has flown by and I cannot believe school starts a week from Monday. It was suppose to start next Wednesday on a hybrid schedule but, like a lot of places, it has pushed back the start date a few days and this summer is going to be all virtual. I'm glad about it because my lymphocytes (which fight viruses) are non-existent so my protection against any viruses comes from my anti-viral meds. This year in particular don't need my children bringing anything home!

I have gotten so use to having everyone around our dog and I are going to have major withdrawal when everyone goes back to school and work - our dog can be good company but she is a horrible conversationalist. Katt is a senior in high school this year and mentioned to her the other day how much I was going to miss her next year and she smiled and said, "oh momma, I could be going to college from our third floor next year virtually, don't be sad yet..." I want her to have the experience of living with friends and going to college but I'm not anxious for that day to come.

Monday is treatment number 8 (and will just have 4 more left). It was really nice not to have to go to the doctor today this week for labs. Hopefully I will get the results of my bone marrow biopsy Monday and they will be good news - fingers crosed!

Wednesday, July 29, 2020

One of those days....

In early March when my counts really dropped I turned over responsibility as the primary dog walker to other family members since I was not suppose to pick up the poop (with a bag). In the last few weeks, my family has gotten busier, and my counts have gotten enough better that Lilly and I have ventured out on our now.

Lilly is only about 20 pounds so she is small and does not walk too fast or too far - so she and I are good companions. Yesterday, was one of those busy mornings for my family so Lilly and I were on our own. By comparison to the last few weeks it was a bit cooler here yesterday and we excitedly headed out for our morning walk with a few letters to drop in the mailbox on our route.

We got about halfway through our walk and I realized - in a panic - that I no longer had our door key in my hand. I thought for a minute to make sure I remembered locking the door on my way out and I definitely did. We turned around and retraced our steps and did an extra search around the mailbox and the poop stop with no luck. I made sure the key was not in the bag with the poop - yuck - and figured that I must have accidentally dropped it in the mailbox.

Luckily Chad and Margaret were home and while Chad did not see my text to let us in, Margaret answered her phone and we at least were not locked out. I called the post office to see if they could check the box for me. The nice part of being in a smaller city was the kind post office worker I spoke with offered to come meet me at the collection box with the key in about 30 minutes. I met up with her and there were just 4 letters in the box and no key.... my heart sank. I felt bad this nice lady had come out to help me and the key was not there. Then I wondered should I get the locked re-keyed? Yes, probably because over the last 5 years a lot of people have had keys to our house, but I really wanted to find it and not have yesterday be the lock re-keying day. So I started retracing our steps again and by the poop spot, after much searching, I found it in the mulch  - huge relief!

Now, this is unfortunately not my first chemo brain incident. I regularly do not remember having read books or watched shows, and once I turned on water to boil in a pot only for Chad to discover several minutes later that there was no water in the pot. Note - do not pick me as your partner in a trivia game right now!!

I am trying to play word games, I'm ready a lot and I'm dabbling in the free online classes (and I'm taking the quizzes) just to keep my brain working. I know the fog will clear [post treatment and my family is extremely patient but I can really be a clue bird and mix things up these days.

Everyone is off to the races here this morning so hopefully Lilly and I have a less eventful walk than yesterday. I am going to put the key on a lanyard around my neck and hopefully make it less drop proof!!

Bone marrow biopsy on Monday was fine as those things go. I won't get the results for a couple weeks. I have been struggling with a really bad chemo induced cough that sounds like it will probably get worse versus better over the next few months, otherwise all is good here.

Thursday, July 23, 2020


I've always been a runner and no matter the length of the race having people cheer you on makes a huge difference. When I get tired if I have people cheering for me it always makes me dig a bit deeper and push to go faster to get across the finish line.

With treatment, having friends and family support me also is so helpful to give me a boost to get me through the tough stretches. When I am down and doubting having people around me that have hope and are rooting for me really does help lift me up.

Thank you to everyone who has helped me get through the awful watch and wait phase, the terror of starting chemo during a global pandemic and the first half of treatment with all the unknowns of how my body would react to new chemo meds. You have all been confident that I could do this even when I was not as sure. I've wondered how many times I get to make it through treatment successfully before my number is up but you all have not wavered in your faith of me. Thank you for pushing me to believe I could do this and helping me do it!

Now that I am halfway through I am feeling like I've got this. My counts are rising, I am bouncing back a bit faster with each treatment and I am cautiously optimistic that the bone marrow biopsy next Monday will show that this round of treatment is working.  Thank you all for reminding me I could do this and giving me hope when I was not feeling hopeful! I could not ask for better friends and family!

Wednesday, July 15, 2020

Signs of Summer

While this summer has been anything but normal there are definitely still some unmistakable signs of summer. Our pool is open (with the appropriate precautions e.g., need to have a reservation, can only swim with family members, locker rooms are closed, etc.), it is brutally hot and humid, neighbors are hanging out on their porches and mosquitoes are biting.

I am missing a summer vacation though. I know a lot of people are doing them to rented houses on lakes, or to see family but since I have to be back at the doctor every Monday and given my weak immune system it is just not practical this year. One of my daughter's asked why I wanted to go on vacation because "wouldn't I do the same things I am doing at home?"... which is nap, read, go for walks. Yes, probably but there is something about the change of scenery and venue that I am missing. (I would also like to not have to cook, unpack the dishwasher or do laundry for a week but that is for another year...)

I am really living just two weeks out and am struggling to think, or plan, further out than that. My labs this week were good which was exciting. My platelets have been normal for a month and my hemoglobin (just barely) broke through to the normal range. My white blood cells are better but still not great but everything is moving in the right direction.

After this coming Monday I will be halfway through and then can count down the treatments. A week later I will have a halfway point bone marrow biopsy to get a better look at how effective this round of treatment has been. Hopefully it is very low so the next three months of treatment can stalk any remaining stray cancer cells. I felt like I started to feel a bit better this time the only new downside has been rashes which sound like they are coming from the drugs having less cancer cells to attack (annoying but a good sign....).

Friday, June 26, 2020

Things I've learned in corona-quaratine

This is the longest we have been home without at least a weekend away to go to a swim meet, or see family, or go a trip over a school break. Luckily, my family makes me laugh and I not only love them but I've realized I really like hanging out with them (and still do after several months of stepped up togetherness!).

I've also been surprised by some of the random things I've learned over the last few months at home.
  • Like most people I learned to love, and then hate, Zoom.
  • I downloaded lots of apps and started ordering online and picking up at places like Target. Those services are amazing and I may never step inside a big box store again and can't believe I'd never tried it before. Ditto on grocery delivery.
  • We did a dog DNA test on our little white dog, Lilly, and found out she is mostly Bichon Frise but also has a little wolf in her (still working to figure out if all dogs results come back this way or if this explains her personality!).
  • I had never heard about dogs needing to have their "anal glands" expressed and had no idea our dog groomers over the last 10 years had been providing this vital service to our dog and us. If you are like us and had not heard of this google it and you will see why I am even more thankful for our dog groomer!!
  • I can't twerk no matter how hard I try - and I have been trying to learn!! 
  • Even though chemo is a bit of masochistic act I've become increasingly confident that I can do it (again) and am a third of the way through treatment. 
  • I've been surprised by people in their capacity for both hate and violence, and random acts of kindness and compassion. Hoping the world tilts every increasingly towards the later...
I have not figured out how to predict what the side effects will be from these treatments. They continue to be a different mix each time. I am sleeping so much this time. Not sure if it is from lower hemoglobin or the chemo meds over time, but I can literally barely make it to 7:30 pm before I go to sleep for the next 12 hours and that is with an afternoon nap. 

Had a bit of a surprise Monday when there was a mix up in the pharmacy and they mixed my penostatin with something (was not told what) and they did not have another dose so I had to come back on Tuesday. I was glad they caught the issues before it came up to the infusion room and I felt bad for whoever had made the mistake. Each dose costs about $7,000 and I am the only one getting that med so they did not have another dose on hand. So I got to have IVs put in two days in a row, get all the premeds and spent more time at the Cancer Care but otherwise not too eventful of a week. We are all settling into the routine of me being a sleeping lump week one and slowly coming back to consciousness week 2 before we do it all again.

Saturday, June 13, 2020

My Nemesis

It's stairs. Just the normal kind you find in your house. They don't have to be steep or long - just stairs.

After every infusion I feel exhausted. I struggle to catch my breath when I walk from the bed to the bathroom but the worst is stairs. Every day that goes by gets a little better but I have not gotten to the point I can carry a laundry basket up (or down) the stairs without my heart rate going up to the "too high" level. My doctor says this is a chemo side effects. It stinks because I spent the two months before starting chemo working out with Katt and spending at least 45 minutes day on the elliptical so ironically was in the best stair shape I'd been in for a long while. Now I have to sit down or lay down when I go from the first floor to the second to catch my breath. It gets better with time before the next round but does not go away.

Last week Katt saw on instagram that the Leukemia and Lymphoma Society (LLS) was doing a virtual stair climb fundraiser. She has never done any fundraising but given I recently restarted treatment and stairs are hard for me she wanted to do something that she can do help. Today she is walking up and and down our stairs 49 times to climb over 1762 steps. I am really proud of her for doing this. Thank you to family and friends that have donated to support Katt! The link is below and there is still time to contribute. I know there are a ton of worthy causes right now to support so really sincerely appreciate everyone giving to LLS.


I still have some headaches and nausea but feel like I am coming out of the worst of the chemo symptoms a bit earlier than the last couple of cycles. I ran fevers for more days after treatment this time which was not fun. It seems like the same symptoms but the combination and length have been a bit different every time.

They gave me extra steroids before my last treatment and I did not have any reactions which was good. Some of my counts were better which was also a good sign that the chemo is working. I just wish we could fast forward and get through this. Looking forward to feeling better next week before infusion #4.

Saturday, June 6, 2020

Everything makes me sick....

The nausea seemed to stick around a lot longer this time. It wasn't until middle of this week that I finally woke up and the chemo nausea had subsided and was just left sick about everything going on in the US right now...

I am sickened by the systemic racism in our country.

I am sickened by the widespread police brutality that keeps getting captured on video.

I am sickened by people encouraging violence against fellow humans.

I feel like I am living in a dystopian novel that I want to put down, never read again and write a scathing review of online. I never thought I would live in a time where peaceful protesters and journalists would be violently assaulted by police in the United States of America. I thought that the times of white men chasing black men and shooting them in the street with impunity had long ago been left behind in this country. Acts of violence and murder at the hands of police disproportionately against black Americans are unacceptable, and we have to figure out how to do better as a country.

I am convinced there is much more we all have in common than our differences. Everyone is someone's child and we all have families we care about and want to provide for.

I head back to have my third round of chemo on Monday. I know I'll feel like crap next week for more reason than one but hope that meaningful change comes soon to not only start a new chapter but a whole new, much better, book for our country.

Monday, May 25, 2020

Another year, another round of treatment...

The first week post treatment I felt miserable but thankfully by the time I got to the weekend I started to turn the corner and felt better. This week I've been really tired and short of breath but otherwise have felt okay which has been wonderful. It has been great to have a few days that I have felt good before I go back again for my next treatment tomorrow.

Last week I had labs on Monday and then labs and met with my doctor on Friday. My Monday labs were double explanation mark rerun twice to confirm bad. Literally the print out had multiple explanation marks by the "Low" for WBC (white blood cells) and the whole line is red then then asterisk that they were rerun and which nurse they called to inform. This was predictable but still does not feel great. So I had to start on the full package of antibiotic, antiviral, antifugal meds just to help give my body some defense. It always makes me a bit queasy to start on all those meds at once but after a couple days my body adjusted to them.

Friday was my birthday and I had hoped that would bring me good news. My labs were flat to slightly better was great. If I have already bottomed out and then just go up from here that would be amazing! Tomorrow will get another read and will see, but my doctor and I are both cautiously optimistic.

While I was gone all morning on Friday at the doctor's office my sweet family decorated my house inside and out. I arrive home to happy birthday chalk on the sidewalk outside and streamers and signs all over the house inside. The girls hung streamers of alternating colors from the top of door frame to my bedroom kind of like the old bead curtain doors. It was inspired by the high school locker decorations and I love it! Katt made an amazing chocolate cake and it was a great happy day. I am excited to be a year older and not so excited about tomorrow but am just going to count of the treatments. After tomorrow will be two down and ten to go...

Wednesday, May 13, 2020

One down...

I left Monday thinking that my treatment would last 4 months with outpatient treatments every two weeks and that I had 7 infusions left to go after Monday. Emailing with my doctor at NIH yesterday about samples they want sent in he mentioned some after the end of my 6th 28 day cycle... so turns out that what is on clinicaltrials.gov for this trial is 4 months which was their original plan. Apparently soon after they started they moved to 6 months. So instead of 7 rounds of treatment left I have 11... ugh, #notexcited.

Monday went well as those things go. Chad dropped me off at the Cancer Center a little before 7 am. I had bloodwork done, met with my doctor to go over the bloodwork results and treatment plan and then I was introduced to the treatment room where I will be spending many hours in the coming months. I do not have a port because I would have to go to the hospital to get one and they are trying to minimize hospital exposure with coronavirus. I have good veins (for now) so we are giving it a go with IVs each time.

I got settled in the treatment center and we started with IV and oral premeds to help minimize allergic reactions. First they ran a bag of IV fluids. Penostatin was the first big drug of the day. I was surprised that it was in a syringe that the nurse injected it slowly over 5 minutes into my IV. It was a non-event and I got back to binge my show of the day on my ipad. After another bag of fluids the rituximab was started. It runs over 4 hours. About an hour into the infusion I started to feel really hot and uncomfortable and my heart started racing. I called to my nurse who took one look at me and stopped the infusion, called for ice and anti inflammatory medication, and started taking my vitals. Luckily I had an experienced chemo nurse who had given this medication many times before and knew what to look for an how to respond to a reaction to the drug. I was beet red in my face and down my neck. They put ice on my neck, a wet wash cloth on my forehead to get me cooled down and they started running fluids. After a bit I was feeling fine and we restarted the rituximab. The rest of the infusion went smoothly and I went home about 4:30pm.

It was a long day and I was exhausted and nauseous but glad to have the first round under my belt. Yesterday I had a lot of expected side effects - body aches, chills, headaches, fevers and nausea. I slept most of the day. Today I have similar side effects but they are milder. Hoping by Friday I feel like actually changing out of pjs into clothes instead of into clean pjs! Then maybe next week I will feel up to some short walks outside before I get to do this again....

My family is awesome. They are taking good care of me and they are all taking turns checking in on me to get me water and keep me company when I am up for it. It is really nice to have them all home and around at a time when they'd usually be at school and work.

Thursday, May 7, 2020

It's a date

Monday I restart chemo at my local cancer care center. It is almost a relief to have a date and plan set. I will get infusions of penostatin and rituximab every other week for 4 months. I have had rituximab before and I just remember it making me feel miserable and like I had the flu (e.g., body aches, chills, so tired I could hardly move) that that would not go away. I have not had penostatin before and will see if that helps offset the ritux or if it will make me feel like I have doubled down on chemo side effects.

Monday will be a long day with labs at 7am, appointment with my doctor at 8 and infusions start at 9. I have to have a bag of fluids and premeds first and then the big drugs will get run very slowly in case I have a reaction to them so have been told to expect to be there for 10 hours on Monday.

The cancer center here is not allowing anyone to accompany patients into the building to limit contacts and potential introduction of coronavirus. I very much support this but am not looking forward to getting dropped off a little before 7am and picked up at the end of the day.  I will likely sleep through a lot of it given some of the premeds, and I have heard wonderful things about the nurses in the treatment center which is great. Chad is also going to download shows I have wanted to watch but have not had a chance to see yet to binge if I feel up to it.

I'm going to soak up as much good family time as I can while I am not feeling awful in the next few days. Hopefully Monday will not be too miserable and that I will have a few good days between each cycle. My family is stepping up to help and so glad that they are all home and I know they will take great care of me!!

More to come once the show gets on the road....

Monday, May 4, 2020

Cancer in the age of Covid-19

We are definitely living in crazy times. I have become obsessed with reading the news daily. I was terrified a few months ago as I read about what was happening in China and then Italy and saw the U.S. slow to respond. I am not an epidemiologist, but as someone who has worked with math for decades I understood that a disease that could be transmitted by people who are asymptomatic that grows exponentially would travel far and wide before it was visible.

On March 6, I went in for my routine blood work. It was the first time I had gone two months instead of just monthly since this all started in 2012. My labs were not great but not awful. I sent them on to my doctor and team at NIH to see if I should start going monthly again instead of every two months. My doctor replied quickly that I should go back in 1-2 weeks and if they were the same we needed to restart treatment. I had not even realized I had broken through a retreatment level. I looped in my local oncologist and he put me on the schedule for repeat labs a week later.

So the next Friday, March 13, I had labs done again and I was still neutropenic. They confirmed that I was in fact ready for treatment again. I emailed my doctor here and at NIH to talk the plan. I was not comfortable flying to NIH for treatment. Both of my doctors agreed I should sit tight for 4-6 weeks and wait for the coronavirus's peak to pass to avoid the risk of spiking a fever from the chemo meds and having to go inpatient with this new virus circulating. 

Thankfully at the same time I got the news to stay home our Governor issued a statewide shelter in place order and schools were closed. We had already been staying home as much as possible and had set up at home grocery delivery. My husband, Chad, and I were in a state of high alert and were disinfecting everything. We talked as a family about how especially important it was with my immune system to practice obsessively good hand washing and social distancing. Our teenage daughters have not complained about it once. They know it puts my life at serious risk. 

After two weeks at home, we all relaxed feeling like we were out of the woods on someone having picked it up before the shelter in place order. We had four weeks of great family time. We have had lunch and dinner together every day. We've played games, worked out together in our gross unfinished basement, made silly videos, given each other haircuts and have tried to embrace the gift of time.  

We know we are lucky. We have a house, food, jobs that can be done from home. We are very thankful for the people that are going to go to work at hospitals, grocery stores, pharmacies, sanitation services and other essential jobs. 

I checked back in with NIH a couple weeks ago because they had originally said they could not accept samples until May, everything was focused on covid-19. I emailed the nurse I usually work with and got an out of office message that she had been deployed. I had forgotten that she, like many at NIH, is part of the Public Health Service. I have been thinking about her and her family since that auto reply....

I connected with another nurse at NIH who talked with my doctor and said they were not accepting samples in May could I wait until June. Agreed with my doctor here that we needed to check in and see how my labs were which happened last Friday. They were terrible. While I had a great month with my family the cancer growth accelerated and I need treatment ASAP. I had a bone marrow biospy last week. My doctor here has connected with my doctor at NIH who has treated me the last two rounds and samples from my testing last week did get FedEx'ed to NIH. Clearance from insurance also came through last week for the chemo meds in the trial so I can do treatment locally. Now I am just waiting on the start date which I think will be end of this week or next week. Right now the plan is I will go into the local cancer care center for outpatient infusions once every two weeks. I will probably have lab work in between but that is all still TBD. With the coronavirus only patients are allowed in the cancer care center and everyone is in PPE and everything is spread out. They know they have a high risk population and are doing everything possible to keep their patients and staff safe.

So what is it like to have cancer now? It is terrifying. There are delays to treatment because you are weighing more risks. The risks are higher which was confirmed in studies that came out in the news a couple weeks ago that patients with cancer, especially blood cancers like leukemia, are 3 times as likely to die from covid-19. If I do nothing I will die with 100% certainty because the cancer will crowd out all the healthy bone marrow so I can't stay at home indefinitely. 

I'm in uncharted territory. I have a rare cancer that is found disproportionately in men. I am on my 5th round of treatment in 8 years. Most people are older when they get it and they have 10+ years of remission after one treatment. As my doctor here said there is no precedent on what will work for me, I'm in uncharted territory on cancer treatment in the middle of a 1 in 100 year pandemic. 

So what have I been doing more of? Yesterday we found some tattoo markers and I let the girls transform me into a pink and purple Cheshire cat. Then my daughter, Katt, insisted I walk the dog with her in hopes of seeing a few neighbors out. I owned my tats and my daughter was not disappointed and a few neighbors were out much to her glee. There are many pictures that will definitely resurface at some point in the future. It was just fun and made us all laugh a lot. I feel like I am game for anything that will bring my family joy. 

I hate the limbo of not knowing when I will start and what the treatment plan will be. I am trying to enjoy each day I still feel good before restarting treatment knowing it will hit me like a wall. I know everyone is going a bit stir crazy with the stay at home orders but please think about people like me who have not choice and need to make sure when my family members venture out for essentials they don't bring anything home. 

Will post again once I know what the treatment plan is.