Day 365: Post Transplant - 1 Year!

We made it! 

One year! I cannot believe it. I know many of you feel that it went by so quickly, I am here to say...it did not.... but here we are. Stronger than we were a year ago. This week is filled with mixed emotions! Of course, I am so excited to be celebrating ONE YEAR, but Wednesday morning is also my one year pet-scan and there is always that small possibility that the cancer returns, so there is some degree of anxiety there.  From experience, I know that attitude is everything, and there is power in positive thinking and prayer. So I will ask for both from all of you - Wednesday morning around 6:45am PST. Yes, that means that Dana and I are leaving the house at 5:15 am to get to Cedars Sinai for a 6:25am check in. Good news is that we will miss the traffic and at about 11am, we will have the results. 

I wanted to share these pictures because although, I am still being careful from covid, and any other germs that are out there - I am starting to live again and loving life! I got to spend some time on a ranch, met a goat named Beth (Yellowstone) started watching the show and am now obsessed with visiting  Montana, finding a cowboy and riding a horse (of course - running into John and Kayce Dutton aka Kevin Costner and Luke Grimes wouldn't be a bad thing either).

Keeping this short! Raise a glass for me today! Happy Re-Birthday! Cheers 🥂 and send a prayer, positivity, good mojo, whatever you have - for clean scans on 08.24.22! Stay #cancerfree. 

❌⭕️❌⭕️

One of my happy places

Sisters

Celebrating 300 Days Post Stem Cell Transplant

Wow people! Can you believe it has been 300 days? That is a LOT of days! 

I know I have not been great about posting updates here or even on social media, I think I got busy living life a little. While I am not quite back to my #livelife status of travel, social engagements, dinners out with friends, wine tasting, yachting (a girl can dream) I did actually return to the office on March 14th. This felt like a gift! I was a kid on her first day of school (assuming you loved school), getting ready every morning, picking outfits out the night before (in my head), it was so exciting and a yes, a little stressful. While I was so happy to see people in 3D after almost two years of only seeing most through a square Zoom window, they were potential germ carriers. My immune system is so young and immature right now (yes, a little like me...lol) and I felt like I had to wear this invisible 6 foot protective armor keeping my distance from everyone. When I would let my guard down, I would have a scare like someone I had just seen, texting me to tell me they tested positive for COVID.  In early May, COVID decided to play house in any "body" (a lot of people) in my building who hadn't had the joys of COVID over the past two years. This sent me back into a mini retreat of work from home status. When I asked my oncologist for a note to return to work in March, he said I was his only patient asking to go BACK to the office - and so in May when I said I needed a new note to work from home again, he gladly wrote it. Luckily, for my sanity, that did not last long and within 10 days, I was back in the office, dodging hugs and handshakes of colleagues who had not seen me in a long time. What weird times.

So what is different on Day 300?

I have not had an infusion, transfusion, steroid, or chemo cocktail in 300 days, so

1. My body is stronger 

2. My hair is growing 

3. My brain is clear

I am grateful everyday even though 

5. I still have to wear a mask inside with pretty much anyone or anywhere

6. I still worry that cancer will come back (out of my control, I know)

7. I still have the extra weight but as I say "my body is a wonderland" so I am trying to be kind to it

What is worth celebrating? 

8. ALL OF IT! 

9. Life!

10. My health

11. Being cancer free

12. Have had 2 rounds of childhood vaccines 

13. 65 more days until my Re-Birthday - August 23, 2022 😉

There is a transition period that you go through from surviving/fighting mode to living again - it is strange and hard to explain but definitely a phase of this entire process. I am happy to say, I am more on the living side of things now, letting go of that fight mentality. Excited and scared about the future, mostly because I have no idea what that looks like, but I know adventure awaits for sure! 

So raise a glass with me today, and let's toast!  

Here's to 300 days and #livinglife #fuckcancer #onlywayoutisthrough #warrior #grateful 

6 Months Post Stem Cell Transplant Update

Warning: Lots of medical jargon ahead.

February 23, 2022 marked 6 months post stem cell transplant. As many of you know from social media, my 6 month pet-scan showed "no evidence of disease, NED!" This is really fantastic news! Here is what else I learned from this visit.
__________________________________
Progress notes from visit with Cedar Sinai Oncologist 2.21.22

In doctor speak.....

Today is day +182.

Just a few tests...

• Plan for restaging at days +100, +180, and +365
• Day +180 PET/CT reviewed in detail with her today. Findings consistent with CR (complete response).
• She has now recovered from her transplant and has resumed care with her primary oncologist Dr. Nguyen.
• Today we again discussed rituximab maintenance. It's unclear that she would benefit from this as she progressed on a rituximab containing regimen and only achieved a remission after an obinutuzumab containing regimen; there are no great data regarding obinutuzumab maintenance after transplant. The additional consideration is the risk/beneift balance of prolonged anti-CD20 therapy in the setting of the covid pandemic. Therefore, given the potential risk and unclear benefit we have decided against rituximab maintenance.

Plan to start post-transplant vaccines at this time. She says that she would prefer to get them done with her PCP and has already confirmed that this could be done. Therefore, I have provided her with a detailed vaccine schedule.

She received the covid vaccine on 3/20/21, 4/22/21, 12/3/21, 1/5/22, and 2/3/22.

I have checked spike protein antibodies today and they are undetectable. Therefore, will arrange for Evusheld infusion.

RTC (return to Clinic): 6 months with PET/CT for 1 year visit - August 23, 2022

_____________________________________________

Let me translate...

1. I don't have to go back to Cedar Sinai for 6 months (at the 1 year mark) for another pet-scan.  Then I will continue to get pet-scans every 6 months, indefinitely - good times.

2. I am recovered from SCT!! Yay!

3. I will continue to see local oncologist every 4 weeks to check blood counts.

4. We will NOT do maintenance therapy because we tried that and it didn't fucking work.  LOL.  

5. I got a 36 month long schedule for repeating my childhood vaccinations! Woot woot. 

6. I received FIVE doses of the covid vaccine over the course of a year - there are ZERO antibodies detected!  WTF.  Basically, since my immune system was wiped out from the high dose chemotherapy pre-transplant, and now it is super young and apparently not mature enough (kind of like me 😆) to know what to do with a complicated vaccine, it leaves me with no immune response to the vax.  Which means, I have absolutely no protection from covid.

The great news, I think, is that I have been approved for Evusheld.  This is an investigational medication that has an EUA approval from the FDA (thus the "great news, I think" part). Evusheld is made up of two monoclonal antibodies that mimic the immune systems's ability to fight off harmful pathogens. Tixagevimab and cilgavimab (really?? who comes up with these names) are long-acting monoclonal antibodies that are specifically directed against the spike protein of SARS-COV-2, designed to block the virus' attachment and entry into human cells.  Science is amazing! 

On March 10th (yes approved and scheduled), I will get two injections - one in each buttocks - again, really? and thank you... did they have to find the biggest muscles in my body. This will act as a pre-exposure prophylaxis (prevention) of Covid. 

March 14th - I can return to the world. I can return to work IRL!! I will continue to wear a mask and social distance. But I can start living again - co-mingling with people.  No super spreader events...but this is all GREAT news. All food restrictions also lifted.

Fun Fact.  March 17, 2022 would have marked two years of working from home.  I am so ready to be back in the office! I love my house and my dogs and I will love coming home to both each day. But I need people.  2022 has not disappointed. We are counting on that for the next 10 months too! 

Next post. A New Perspective. 

Reflecting on this Live Life Detour.

Today is another milestone. January 4th. Three years since my initial diagnosis. I thought I would pause and reflect. Here are my 2021 and  2020 reflections.

You do not ever forget the moment a doctor tells you that you have cancer. The good news is that today, this year, 2022, I have no evidence of disease (NED) in my body. Hooray!

In looking back over the last three years, I know, the last two sucked for everyone with COVID and all, but for me, it has been three challenging years.  

From January - June in 2019 I had 6 rounds of RCHOP chemotherapy, loss of hair, a myriad of chemo side effects and fun and then a pet-scan that showed no evidence of disease (NED). 

July 2019 - December 2020, I continued with maintenance therapy from that point on and received the R in RCHOP, Rituxan (an awful drug that caused terrible side effects, and kept me on constant steroids, that my body does not like). This happened every 8 weeks through November, 2020. 

Because I was still getting infusions so often, I was considered immune compromised and when the world started to open up a bit, I had to continue to work from home even after everyone returned to work.  Actually, I did show up to the office for 3 days in October of 2020, until I got booted and told I needed a doctor's note to stay. I did get the doctor's note, and it said to stay at HOME. Ugh. Through this 16 months of maintenance infusions - I got scans every 6 months.  I cannot lie, each time, it was like, oh no - is the cancer back? Luckily, I made it 16 months, unfortunately, I needed to make it 2 years for the odds to really work in my favor.  

November 27, 2020 - cancer returned. If you recall, it was another lump in my neck in the same location as original lump and they weren't sure if it had spread anywhere else. They ordered a pet-scan, and I met with the radiation oncologist as the plan was to just zap it. Fast forward...to scan results - cancer had spread and was in my chest as well, radiation was off the table - and now we were looking at more chemo.

January-June 2021, 12 days of chemo spread over 2 days every 4 weeks for 6 months. No hair loss, some side effects but made it through that with fewer side effects but a LOT of anxiety. As the reality of having a stem cell transplant became more real.

July 2021, remember, it was #livelifejuly - I had a lot of tests but no treatment, a little break was nice.

August 2021, was 18 days in the hospital, and a stem cell transplant on 08/23/2021 - my new birthday.

September - December 2021 - Recovering at home.

2021 Recap by the numbers: 23 chemo treatments, 3 pet-scans, port placement and removal, stem cell harvesting, stem cell transplant, blood transfusion x 2, platelet transfusion x 2, over 50 blood draws, lots of anxiety, lots of love and lots of support! Let's not do that again.

January 2022.  Still living in a bubble, especially with omicron out there but luckily, I am getting stronger everyday and feel pretty good. I have some residual side effects but nothing too awful. Life is good. 

Since they wiped my immune system, they also cleared any and all vaccinations, including the ones we get as babies...and COVID. So, December 3rd, I got my first dose of Pfizer vaccine again, but of course they are saying it is my booster, since they do not know how to handle someone with stem cell transplant and covid vaccines. When I went to get my 2nd dose (or 4th dose which in an immune compromised person is not unheard of) I was turned away saying that this is not in their protocol (oh I even had a doctor's note). Upon leaving, they said if I had come in and lied and said I lost my vaccine card, they could have done it. So tomorrow, I am trying again. Then we will see if I can actually get the 3rd dose that my doctors want me to get (all within 21 days of each other) I am lucky that I do not have any adverse reactions to the vaccines.

In February, I will have another pet-scan to check for any evidence of disease again. I also start the 2 year long process of getting revaccinated - I will get a schedule just like a newborn and follow that - should be fun! I hope there are no side effects - as a baby, even if there are, who remembers and you have no idea what they are since you cannot speak yet - haha funny not funny. I am also hoping to return to the office in February (fingers crossed).

In full disclosure, I do have a small lump in my neck, in the same location both of the other lumps appeared, but it is not registering as cancer on the scans so we are just keeping an eye on that - they say, it might just be some stubborn lymphoma - and if it is we will just blast it with some radiation (as if that is so easy). So, I am just tucking that away, it could be anything.   

I do apologize, to those following along, for the recap, but this blog is my way of processing all that I am going through - it felt like an appropriate time to reflect on the past 3 years, and remind myself all that I have been through. I see pictures of myself from three or four years ago and think why can't I be back in THAT body - that version of myself, but I realize, not only was THAT body riddled with cancer (no thank you), but I needed my body to be strong, to fight, and in time, I will get a version of myself back that I am comfortable with. 

And here is to 2022 being the year of NED, goodbye cancer, please do not come back. I am really looking forward to getting back to living life again. Happy New Year. and Thank you. xoxo

At Home - Recovery

Checking in here. Here is how it is going.  I am somewhere between awful and amazing.  It is 77 days post
stem cell transplant and I am grateful for the way my body has handled all of this. It is strong and overall is handling recovery well. I wish it was that easy for my mind. My mind thinks I should be feeling better by now. I should be back to "normal," whatever that is. From the day I came home, I jumped back into work trying to feel "normal," I walked a mile or more each day, wanting to get my body back into shape, and I struggled daily with eating, drinking, sleeping, and fatigue. See my mind and body do not agree and some days my body wins, while most days, I do what I want and not what is best for my recovery. This is my personality. This is also a coping mechanism. Here I am at Day 77, thinking I should feel great! I don't. I am struggling with fatigue, nausea, heartburn - all remnants of chemo. Allergies have kicked back in as well as my asthma. They have me on antibiotics (the nastiest liquid I have ever taken) to prevent pneumonia as well as an anti-viral medicine to prevent any viral infection. My nerve endings hurt, I work out and my body is unusually sore, and anything with any spice or taste seems to cause heartburn. But in the moments, that I feel ok - I try to take that in and remember that moment. On the days, I get to leave the house, and go to the grocery store, sit on a soccer field or chat with people in real life, I try to remember those moments - those are the best moments and the ones that keep me going. But I so want to get back to my living my life. 

This is not meant to be my pity party post. It is just documenting what recovery at home is like. As I have said over and over, I am so lucky, I could have so many more awful side effects and ailments. That said, there are still side effects that I will battle for many months ahead. I know, patience is something I must embrace. I am not looking for sympathy, shout outs or "you got this" - I am just being authentic and sharing the ups and downs of recovery. 

More reality, in 23 days, I will have a Petscan - the doctors say to get a "re-staging of the disease." When I heard that, I thought, re-staging? You mean the stage where the cancer is fucking gone? I want that stage. If you have ever had cancer, or know someone who has - when you are at the point that I am, when the cancer should be gone - but you just are not 100% sure - you constantly feel for lumps or think symptoms could mean it is back - that is really maddening and not an effective thing to do. It is just human nature.

What is next for me? Well, more healing, more recovery and possibly more maintenance therapy (NOOOO).  Those are the maintenance infusions I had every 8 weeks for the 17 months prior to cancer returning. My Cedar's Sinai doc says it is complicated as to whether we continue this because of COVID.  What I think he means is that by continuing infusions every 8 weeks, we keep my body in an immune compromised state. This is not what I want. If I get a vote, I will opt for letting my body do its thing for awhile and watch and wait. I mean, last time that didn't even work - why would it be different this time? Also, why did I just go through all of that only to continue in this state of pumping poison into my body? January 2021 will be 3 years of battling cancer (which I know - for some - that is a small amount of time) but I need a break from this. I want to live my life again and not focus on just surviving. 

BUT...for now, for today, I am going to focus on the holidays.  😆and I am going to be that person that decorates early, listens to holiday music early, and yes I may have or have not watched a sappy lifetime holiday movie already. 

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” 

― Haruki Murakami, Kafka on the Shore

Stem Cell Transplant - Part 3 and 4

Part three of the Stem Cell Transplant is the actual Transplant! Day 0 (Your transplant birthday) and that day was August 23rd for me. What lied ahead from this day was not fun, but I made it through with lots of love and support.

Part Four is Recovery. This lasts for quite a while but the first 100 days are the most critical.

The Instagram posts below document the first 11 days of recovery, while I was still in the hospital. Reading back through these posts was a bit surreal as I honestly have very little memory of that last week. Mostly because I was in such a fog and on so many meds for pain, nausea and a million other side effects that were happening inside my body. Partially from my mind doing a good job of just blocking that week out. 
This week was my week alone (not counting the many nurses, doctors, and other staff that seemed to always be in my room). And although, I vaguely remember this - I was sent "Love bombs" all week which were video clips of love and support from friends and colleagues. Including friends from all over the country. So much love! Since then, I have watched them many times, tearing up from your kind words. Thanks Mel - for putting that together -- #grateful #blessed

August 23, 2021
Day (0)/Day 7. Stem Cell Transplant done ✅. 
Posting for Jenith: Three bags of frozen stem cells delivered in a cooler and popped back into Jen’s system. She is doing great but a little worn down. The next week will be spent in “recovery” while her body continues to process the chemo drugs and the stem cells do their important work of growing new cells and rebuilding her immune system. 
Today is also is considered her transplant birthday. If you know Jenith, that means from now on June and August will
both be big celebration months. 😉#stemcelltransplant #livelifedetour#nonhodgkinslymphoma#onlywayoutisthrough #warrior#thankssisterforbeinghere

August 24

Recovery: Day +1/Hospital stay Day 8. Today was a rough day. They pumped me with steroids yesterday which my body hates so I wasn’t able to sleep last night. Although, the worst side effects are yet to come, the mental challenge of being in this hospital and this room is not for the weak. I am working so hard to find the joy in each day and feel so lucky to have had the ability to have this transplant but some days, hours and minutes are harder than others. I am so grateful to my visitors even on the days I want to tell them not to come. Hoping to break free in 13 more days (yes I am counting) and I wish I could just enjoy this time without any of life’s responsibilities but I just do not operate like that. #justkeepingitreal#thehardpart #onlywayoutisthrough#daybyday #findthejoy thanks @76mmp for being here today - you were definitely the joy in today ❤️❤️❤️

August 25
Recovery: Day +2/Hospital stay day 8. Today was better than yesterday for the simple reason that they did not give me more steroids. The fascinating thing about what is happening inside my body right now is that, I am actually cancer free, but all the chemo still hasn’t even done its work and we are waiting for those stem cells to engraft and do their job. In the meantime, my blood counts are tanking (as expected) which is causing fatigue, nausea, and chemo side effects are starting to appear. I will spare the details there but you can imagine. Today, I am trying movement and positivity to get me through plus a long visit with a friend. 2 more days of visitors and then I have a week of isolation due to incredibly low immune system. I am putting it out there. I want to be home in 10 days! 10 more sleeps. September 4th is the earliest I can go home if all the cells do their jobs. So that is my focus!! Do your job!! Plus as you know, I will completely take all the mojo, positive vibes, unicorns, puppies and prayers you are will to send my way!! Thanks @martikafelix for the long day with me and letting me pretend we were back in the dorms talking about boys. 🥰😍😘#onlywayoutisthrough#warrior #positivity#doyourjobstemcells #grateful#10moresleeps

August 26 - 27
Recovery: Days +3 and +4/Hospital stay days 9 and 10. 
Posting for Jenith: 
Today we hit some bumps in the road of the #livelifedetour. As expected, with all the changes to her body, Jen spiked a fever. Within minutes of taking her vitals, nurses jumped into action, drawing blood from her PICC line and other arm, taking chest x-rays and administering antibiotics and a hydration drip. After a few hours, her fever was gone, but she is feeling the impact of her low blood counts and chemo drugs. Since her immune system is basically nonexistent now, she will not be permitted to have visitors until next Friday. Hopefully, she will get some pain relief and healing. Thanks to all for the love, support and prayers. #warrior #growstemcellsgrow#grateful

August 28
Recovery: Day +5/ Hospital stay day 12. After the rough day that was yesterday with fevers, daggers in my stomach and nausea….they put me on constant hydration, tramadol for the pain, antibiotics for the prevention of infection and I actually managed to sleep most of the night and day. Eating is really not a thing right now, but they are ok with that. Today, my counts dropped even lower and they gave me a platelet infusion. I am holding steady and while tomorrow may not be my best day, I think we have figured out how to manage what is. That smile on my face is actually a real one today. Thanks for ALL the continued love and support. #onlywayoutisthrough#weareinthethickofit#angelswatchingoverme#amazingnursestoo #dayonenovisitors#stemcellsdoyourjob#nonhodgkinslymphoma

August 29
Recovery: Day +6/ Hospital stay day 13. Last night went on with more blood and urine cultures as they found staph infection in my urine. They needed to confirm it was not in my blood too. They drew vials of blood and then administered two antibiotics. They also started the Zarzio shots again to help build white blood cells which are basically at a <0.03. Hemoglobin dropped to the magic number 7.0 that requires a blood transfusion. I am just over here checking off all the bucket list items. platelet infusion ✅, Blood transfusion ✅. Today was exhausting and I slept through most of it. Tomorrow, they will run an echocardiogram just to check that no infections have reached my heart. Tomorrow is also a WEEK since my stem cell transplant. amazing. 
I will meet with my doctor and the team tomorrow and get a better idea of what to expect. blood counts typically jump up on Day +10 which puts us at Thursday. 🙏🤞🙏🤞#scheduleddischargedayisaweekfromMonday #maygetoutasearlyasSaturday#stemcellsdoyourjob 
#onlywayoutisthrough#weareinthethickofit#angelswatchingoverme#novisitorsallowed #neutropenic#nonhodgkinslymphoma
#hairstartedfallingouttoday#thatmightbeacrackercrumbonmychest

August 30 - September 2
Recovery Day+10, +9, +8 and +7/ Hospital stay day 17. UPDATE: what a rough week. They were not kidding when they said you would feel awful when your blood counts dropped to 0. I spent the week curled up in a ball of discomfort, nausea, knife daggers in stomach and overall fatigue. BUT here I am, almost on the other side… still feeling pretty crappy but my blood counts are rising! Day +10 in the transplant world is a day that this usually happens. my white blood counts have jumped from 0.19 (yesterday) to 0.61!! We are waiting to see what my absolute neutrophil counts are to determine whether I have engrafted yet!! that means… my stem cells have attached back to bone marrow and are doing their job!!!! This is ALL great news and while I still feel awful, inside I am smiling. This week, I also lost my hair again (not a surprise) but never fun. If all goes well, I may get an early release this weekend. 

#inthethickofit #onlywayoutisthrough#stemcelltransplant #warrior#thanksforallthelovebombs #prayers#grateful

September 3, 2021
Recovery: Day +11/Hospital stay day 18! my blood counts soared! I got early release for good behavior and ummm of course outstanding blood counts. My ANC (absolute neutrophil counts) were at 410 on Thursday and it had to get to a 500 for engraftment of stem cells on my bone marrow (doing their real job) and for them to let me go home….drum roll… they came back at 2,500!! #overachiever and they sprung me three days early!! I cannot tell you how good it feels to be out of the hospital. I came to my cousins for the first night to be pampered and sleep in the princess bed. This morning the sunshine on my face is the best medicine. Soon 🔜 I will be home with my pups and recovering in my home. #sograteful #earlyrelease#onlywayoutisthrough #wedidit!! #warrior#thanksforalltheloveandsupport❤️

September 4
At Home: Recovery Day +12 
Yippee!! There’s no place like home - honestly. Jenith has been home for almost 3 hours and, as expected, she returned home in her usual rebellious mood. She is on a low microbial diet for the next two weeks, so our first order of business was to read “the rules” and send me out to forage for food. I left her alone with one instruction: sit on the couch and rest. She did NOT listen. I got back with groceries to find her organizing, cleaning ice cube trays and definitely NOT sitting in the couch. 😝

Speaking of rules, many people have expressed the desire to visit or send food or flowers. She appreciates the offers, but because of her fragile immune system, she won’t be able to have visitors until her doctor gives her permission. Also, her diet is restricted and she cannot receive flowers. 
In the meantime, she will be recovering from home and getting stronger each day. She can’t keep up with all of your texts, but she reads each one and they elevate her spirits.

She is very happy to be home and her puppies are even happier. They missed her!