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 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.