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!

The Joys of Chemo...

Not exactly like "The Joy of Cooking," but if I had to write a recipe book about lessons learned from  Chemotherapy the first time, it would include the following tips.

1. Rest, when you are tired.
2. Eat, when you can.
1. Eat lots of vegetables and fruits, when you are not nauseated.
3. Accept help even when it feels uncomfortable.
4. Enjoy the good days.
5. Get through the bad.
6. Move everyday, even if you move slower than you want.
7. Laugh.
8. Find the silver linings (they are always there).
9. Find joy in each day.
10. Focus on the positive but allow yourself to feel all the feelings. 
11. Know that being sick and fighting cancer is not a sign of weakness.
12. Always cuddle with your dogs. They will get you through any day.

Simple, I know...but for me - important. I did not expect to be doing this again so if I don't take something from the last time and make it better, it almost seems like a waste of valuable life lessons. It has been less than a month since finding out about this new #livelifedetour. The first couple of weeks were filled with anxiety and fear. Once, I knew the plan I started working on acceptance. Since my last post, I have had the port placed back in my chest - which just freaks me out, but each day I get a little more used to it. Something about knowing that they connected a catheter to my right jugular vein is just a little scary. It is  uncanny that they placed the port on the same exact day, exactly two years later. I am going to have to use those numbers for my next lottery pick (012819 and 012821) - there has to be something lucky there.  

February 3rd, I had my first day of chemo. I was a mess that day, so nervous and anxious about unknown side effects and having to be there alone. But Remy, my angel chemo nurse, called me that morning and told me to bring someone - he would put me in a private room and get them in. That made all the difference and my good friend stayed all day with me. I had to go back the next day for more fun - and I was once again, given private room and bottle service - and allowed a friend. I couldn't believe my luck. Thank you Pacific Shores Oncology for having the best and most caring nurses out there. 

The next few days were filled with the usual lack of sleep from prednisone (pre-meds), headaches, nausea and exhaustion - but I worked through it and headed back the following Wednesday for another dose. Again, I got the VIP treatment! So I have one more day (this Wednesday) and we are done with Round 1 of this new cocktail - I have labeled this new cocktail Lady Godiva (Gazyva) and Bendejo (Bendamustine). Lady Godiva is the stronger of the two - so they had to slowly build it up in my body in 4 doses. I think the bendejo may be the one that makes me sicker (not surprised by the name) as I didn't get that on Wednesday and my nausea is less. 

After Wednesday, I get a 2 week break and then March 3rd and 4th we do it again. But then I get a 28 day break - woohoo - and don't have to go back until March 31st/April 1st. 

I am calling this the chemo "honeymoon" period. I am tired but ok. Some days I feel better than others. But my blood counts are good, I do not have bone pain or nerve pain. I can still enjoy coffee on most days. With each treatment, some of these side effects may get worse. So for today. I am enjoying my good days and this "honeymoon" -  Getting outside. Enjoying time with the dogs. Walking at the beach (maybe over did it there) and just feeling grateful.

That is my update for now. 

Sunrise today!

I am going to be ok.

Checking In after Round 5

I realize I have been really quiet here. It has been a rough few weeks between round 4 and round 5. But I still see the light at the end of the tunnel. I cannot believe I have one more round of chemotherapy to go. Then we wait 2 months (the waiting alone may kill me) and repeat the PETscan for the only option I am accepting which is 100% REMISSION. 
I know I have a long road to recovery ahead and that after May 21, 2019 - last day of chemo - I will not just bounce back - but I will start living my life again and each day I will get stronger.


Round 4 of chemo was a bitch. I developed Peripheral Neuropathy. which basically made every nerve in my body extremely painful. It hurt to even lay down, add bone pain to that, and I was pretty much a hot mess! That lasted right through my third week - which was supposed to be my good week - so I felt ripped off and not ready for Round 5. But I pushed through - because as you know by now, the only way outta here is through. We made it through round 5 with minimal side effects, some loopiness, and laughs. During the infusion, my port stung a bit, but Remy checked it and it was fine. As you know that Purple Power Port is in my chest and the catheter runs from the port to the superior vena cava, just upstream of the right atrium. Later that night, I felt the part of the catheter popping up under my skin and it hurt. I am now waiting to have a "port study" done to make sure it is ok (and not the good kind of port wine - haha).  All part of my #livelifedetour. Will keep you posted on that.

As for Round 5, so far, it is the typical exhaustion, headaches, nausea, metallic tastes and lack of appetite - all side effects I can handle. Counting the days to Round 6 and being done! 18 to be exact. Moving on from this detour!

To help reduce the chances of more Peripheral Neuropathy, we are switching back to Zarxio and off the Neulasta - the Neulasta worked great! My white blood cell counts were off the charts high! But the other side effects were also off the charts in a negative way. The main difference between the two is how long they last in your system. Neulesta lasts for 14 days and requires me to be on prednisone for longer than with Zarxio (as it helps with the pain). Zarxio only lasts 24 hours and requires multiple injections and does not work as well - but honestly, I would rather be housebound from people and germs and wear a mask when I am out than have the pain. Especially since I am so near the end. So shot number two is today.

That is all I have for you today. Just wanted to check in. I am forever grateful to all of you that continue to follow along with me either here or on social media and send your love and support. I know I have said it before, but I so appreciate all of you and it really helps give me the strength to keep fighting. Love you all!!! 💚💚💚

Oh, one last thing. I could not have survived the last few months without snap chat - those filters have made me laugh, cry, and see myself in all different ways. Thanks to my sister and team for snapping every day - what a silly and fun way to communicate. Here are some pics from this past month.