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!

Stem Cell Transplant - Part 2

 Part 2: Conditioning

It is 7 weeks since I left the hospital, and I had this post partially written - but could not get myself to come back and walk through that time until today. I really wanted to recap all of this. 

This is the next part of the process. The preparation or conditioning as they call it for the stem cell transplant. On August 17th, I showed up at Cedar Sina Hospital with a full day ahead. It started with labs (of course, they love to draw my blood), followed by the PICC line (Peripherally Inserted Central Catheter) insertion. This is a catheter that is placed on the inside of your arm all the way to one of your larger veins in the center of your chest. They do this with you wide awake, no numbing or anything (hello anxiety). From there, we went back to the 7th floor - Cancer Center to await the first dose of chemotherapy. I also got admitted to the hospital this day but since the bed wasn't ready, we started chemotherapy on the 7th floor This chemo (BEAM) was so strong, it took my bone marrow to a place that was irreparable without the transplant - but on August 23rd, they infused my stem cells back into my body.  Stay tuned for more on that!

What is written below are my Instagram posts documenting the 6 days of high dose chemotherapy. 

August 17:
Day -6/Day 1 Here I am. Survived what they call Day (-6) in the transplant world. I am in what is called the “conditioning” part. Six days of high dose chemo (really, really strong drugs that kill ALL of your cells, as witnessed by awesome Nurse Andy, putting on his hazmat gear before administering the carmustine.) I handled it like a #warrior although I felt pretty crappy during the last hour. I got into my room around 10:30pm and then spent the next two hours doing intake and seeing the doctor around 12:30am. Surprisingly, I slept well until a woman started screaming 😱 for hours, may need to ask for a new room. Today, and for the next 4 days I am sooo lucky as I get chemo TWICE a day (10am and 10pm -3 hours each time) #pastmybedtime#chemoallweek #needmysleepnow#thanksforalltheloveprayersandsupport#myarmy #picclinelife#thankssisterforgettingmethroughdayone #❤️

August 18:
Day -5/Day 2 -In transplant speak, today is (Day -5). It’s not over yet as I’m just getting hooked up for the 2nd 3 hour chemo cocktail for the day. This is a first for me. I have had chemo infusions for as long as 9 hours and more commonly 4-6 hours. Getting it at 10pm at night - never. I am hoping to sleep since I haven’t slept much in 48 hours. Overall, I have had little reaction to these new drugs. Yay! The steroids SUCK and you can see my lovely steroid burn starting. They amp me up and I cannot even clean. Had some hard core anxiety this afternoon but with a few calls with family and friends and 4 laps around the 4th floor, I calmed down a bit. We do this 10am/10pm chemo through Saturday night. #maythedaysflyby #warrior#anxietysucks and so do #steroids#yesigottoswitchrooms#thankgodforthat #livelifedetour#onlywayoutisthrough #imdoingit#loveyouall❤️ thanks for visiting today cousin Mindy - 😍

August 19:
Day -4/Day 3 was a good day!! Chemo continues to go as smoothly as possible. Today we clocked 8.5 laps on the 4th floor which is a mile. We laughed, we worked, and it almost felt as normal as one can feel in a hospital undergoing conditioning chemo before a stemcell transplant. Doctors team said I might be the most boring transplant yet (because I am such a warrior 😆)#4daysawayfromtransplantday …thanks @76mmp for being here today. ❤️❤️#onlywayoutisthrough#nonhodgkinslymphoma #jenithstrong#iamthestorm#heparinbrusiesallovermybody 🤷‍♀️but no blood clots. 😆

August 20:
Day -3/ Day 4 . Chemo again tonight from 10pm-1am. Twice on Saturday and then Sunday is the last day. Blood counts are dropping (as expected), along with my energy levels. Monday is transplant day!! Thanks @lcdonovanfor coming to keep me company today. ❤️ Once transplant takes place visitors are allowed less and then not at all. so I appreciate it now. They are so strict as they should be (only healthy, fully vaccinated visitors allowed and only one person a day). #nogermsallowed #stemcelltransplantahead #livelifedetour#onlywayoutisthrough#nonhodgkinslymphoma #jenithstrong#iamthestorm #gratefulforallofyou #❤️

August 21:
Day -2/Day 5. After tonight’s chemo treatment, that will make NINE treatments of high dose chemo in just 5 days. Holy shit! Last one is tomorrow. Today, I definitely started feeling the side effects especially the fatigue but pushed through and walked 12 laps in the hallway (1.5 miles). Had a lovely visit with my cousin, Mindela and managed to do a little work. Evenings are hardest for me right now. But we are doing this!! Preparing for Monday!! #stemcelltransplantday!! #onlywayoutisthrough #iamthestorm#warrior #nonhodgkinslymphoma#grateful #❤️❤️❤️

August 22:
Day -1/Day 6. We did it!! 10 doses of high dose chemo ✅. Today’s chemo required a form of cryotherapy. I had to start eating ice chips (non stop), 30 minutes prior to chemo plus the entire time the chemo was infusing into my body (45 minutes) and….. wait for it…. YES - and additional 3 hours afterwards!! I had
@danalhalle as my “Ice Coach” and we powered through. The goal is to prevent mouth and throat ulcers. Tonight, I sleep. Tomorrow is a new day, a new me! Transplant Day! They call it Day 0! We have arrived!!! All the good mojo, positivity and prayers welcome. #stemcelltransplant #chemoisover#livelifedetour #iceicebaby

Looking back, this was not my worst week in the hospital except for the anxiety. I struggled with that on a daily basis. In part, because I was in a room on the 4th floor with no fresh air and no idea how long I would really be there. The other part, was all the unknowns of how my body would react to all the drugs and the transplant. As it turned out, I handled it better than most and while you will hear about my worst week in the next post - I got lucky. I also had a small group of family and friends that came and sat with me for hours. So grateful for them and that drive that they made regularly. Although this first week did not allow me to sleep soundly (I was in a hospital and not at the Beverly Hills Spa), the side effects of chemotherapy had not happened yet. Below is my room - and yes that is a blanket with all my NY girlfriends and of course the dogs are on it! Thanks Laura Jean!