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

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

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 1

 As you know, I like to educate those that care of all that I am going through with this fight against cancer. I am back in remission right now, which is where we had to be for this type of stem cell transplant.  I know, why do I have to still do this if I am in remission? The type of cancer I have (follicular lymphoma - aggressive), is not curable but it is treatable.  I made it 16 months in remission last time. we are hoping with the stem cell transplant, we can go 5-10 years. I would even like to sign up for 20! 

Disclaimer: If you are squeamish...stop here,

Part 1: Mobilization and Harvesting

When I think of harvesting, I think farm, crops, grapes, not stem cells. But last week, they harvested 4.5 million stem cells from my blood.  Amazing! This was the first part of the autologous stem cell transplant process. As I have said, I am lucky to be able to use my own stem cells, it is much easier for the body to accept your own stem cells. The process was not as bad as I thought, although there were some scary parts. I had 4 days of daily shots of G-CSF (granulocyte-colony stimulating factor also known as Zarzio) This is a type of drug called a growth factor. It increases the number of white blood cells in my blood. In the past, they would harvest from your bone marrow (ouch) but now they do use peripheral stem cells that come from your blood. We watched my white blood count go up each day. We started at 4.3 and by the 6th day it was up to 70! On the 4th day, they placed a U-catheter in my neck. They did this while I was wide awake and just numbed my neck. That was scary! They placed a few stitches to keep it in place and sent me home with this hanging off my neck (reminded me of those little tabasco bottle). 

Tuesday morning, I was hooked up to this machine.
Blood left my body, went through this machine that captured my stem cells and then returned to my body. Again, freaking science - insane and awesome! I was hooked to that machine for about 4-5 hours each day.  Sometimes this takes up to 4 days, so although I would have preferred one day (I found out that is rare) and so to make the goal in two days was worth celebrating! Each day, we waited to see how many stem cells were collected. Because there were so many white blood cells in my blood, they kind of get stuck (think too many people on an escalator) and cannot get out of the body so Tuesday night, they gave me Zarzio and Mozobil (a booster to help the white blood cells move). Wednesday, I went back for day 2 and was elated when they said I made it!  They removed the u-catheter from my neck (also scary) as the nurse was doing it, we had to practice a breathing technique that I had to do while he pulled it out.  When he told me, I was to take a huge breath in, hold it and then blow out really hard for as long as possible (to AVOID an embolism - oMg) - and this is what he pulled out of my neck. Here are my stem cells, going off to the freezer for now! 

I was able to go home for 5 days (2 left) before being admitted to hospital for the next part - August 17th.

Part 2: Conditioning:

6 days of high dose chemotherapy. This chemo is like no other than I have had. Super strong to kill any left over cancer (the bad cells) hiding in my body as well as all of my good cells.  This chemo will take my bone marrow to a place that is irreparable without the transplant - but on August 23rd (Day 0- a new birthday in the transplant world - and you know I love birthdays!! Now I get two!), they will infuse the stem cells back into my body.  Stay tuned for more on that!

I have two days left to enjoy fresh air, my puppies, family, good food and just living life. I am trying my best to do that - but I will not lie, anxiety is high. I know once I am in it, I will be the fucking warrior I have been and will do my best to keep you all updated.

As I always end a post, I am forever grateful for my army of supporters out there - you have no idea how your likes, comments, texts, and calls get me through!  Ironically, today's entry in Mark Nepo's Book of Awakenings this morning,  told me to ask for help. This is so hard for me, but I know in the next couple months, I will need to do more of this. Watch out! 😂💚💚💚

"Perhaps the shortest and most powerful prayer in human language is help" - Father Thomas Keating

Here is to #livinglife in July!

Right now, I am sitting in my newly update backyard which really turned into a hidden paradise for me, the wind has kicked up, it is 5:30ish and still 72 degrees out which is lovely and I am happy.  The dogs have learned to just chill out here with me (well except for Charlie Bear).  Life feels really good right now. I am 10 days out since my last round of chemo and I feel good. Perhaps the glass (or two) of sparking rose has helped me to feel so good - but that is what makes this even better - I am enjoying a glass of sparkling wine. It doesn't taste weird or metallic, in fact, it tastes fantastic!

Tomorrow, I have a bone marrow biopsy.  Have any of you had one? The first one, in January 2019 - I really was a warrior, I did it in the doctors office with some local numbing stuff. Then in July of 2019, the oncologist (we call him Dr. Danny) tried to do it again, but my nerves had become so sensitive from all of the chemo - he stopped before I did....he said he could not keep putting me through that pain.  They basically stick a needle into your bone and pull out some marrow (OUCH, right?), so they sent me to Hoag Hospital to have it done under twilight anesthesia which honestly still really hurts but it is quick. So tomorrow I get to do that again.  It will let us know if there is any cancer left in my bone marrow. When I was originally diagnosed, 90% of my bone marrow was cancer. 

Friday, is a day to celebrate, I get that damn port removed from my chest. The one that they placed this time with the catheter over my collar bone and right into my jugular - so for the last 6 months, every time I turned my head, I felt it tug. It has been awful and uncomfortable, sleeping in any position other than on my back, impossible, and when I asked at two months in,  if we could fix it, they said "is it oozing? swollen?" No, I said just extremely uncomfortable, which they replied, we cannot help you if it is just uncomfortable - so as soon as I heard that they are not using it for the stem cell transplant - I said - let's get that thing out of me. and so July 9th - they will do that!! 
Great advice from a new friend "Take the port with you to the bars on Friday and wave it around like a trophy"  - so you know where I will be Friday night! 

The following week is filled with a Petscan, a full day of pre-transplant workup tests (chest x-ray pulmonary function test, echocardiogram, echo doppler,  full blood panel including a check for infectious diseases, and a call with a social worker to be sure I have support when I get home from the hospital.  After the 16th of July, I should get to really just #livelife until August 6th when they start the mobilization/harvesting of my stem cells (we can discuss that in another post).  

So....for now. I am going to enjoy tonight and all of my good days, my July.  Walks on the beach, coffee with friends, evenings in my backyard with a glass of something cold.  If you want to join me....reach out! I already have a duffy boat ride on the books, and I am ready to fill my dance card at least for the next couple weeks. 

Take a Right at the Fork in the Road

We have a direction...If you are following me on social media - you may already know that the chemo is working! So that puts me in the chemosensitive category, meaning the cancer is responsive to this chemo. Yes...that is great news because - it leaves me options in the future, when the cancer returns - says the doctor. And I guess when you have a cancer that is not curable but controllable - options are good.

So now what? Now I complete 2 more rounds of this "baby chemo" (another doctor term) and then we prepare for the autologous stem cell transplant. A stem cell transplant will make remission last longer (because seriously only 16 months in remission is definitely not going to work for me again). How long will it give me? Who knows. Every "body" is different. 

This past few weeks have been good for me in the sense that I am getting more information about what is in the near future. For someone who is a "planner," that is important. I heard from my Cedars Sinai oncologist who let me know that I have "officially" been accepted into the transplant program. 

When I first heard that, I thought it sounded like I just got into my dream school - but then realized that I should be looking at this as a gift. The team at Cedars Sinai, meets weekly to discuss transplant candidates - and when they discussed my case - they all agreed that I was a good candidate. That is a good thing. It also makes it all very real. and scary. and overwhelming.

Last week, I also got a phone call from Jean - my transplant coordinator/nurse navigator - yup I get one of those too. Honestly, she is already a critical part of this journey. She called me on Tuesday to introduce herself and discuss the process a little. She said she would follow up with an email with more information. On Thursday, I got that email filled with a LOT of information. A list of things I needed to provide right away, like a dental clearance, mammogram report within the last 2 years, a pap smear report. These are things that CIGNA requires to move forward. Also included, was a sample schedule of the different parts of the transplant process - they break it down into 4 parts - like a good mini series 😂.

Part 1: Evaluation - Pre-transplant work up and testing (they check all your organs to make sure you can hack it)
Part 2: Mobilization and Harvesting - (Zarxio or similar shot to increase stem cells, followed by the actual harvesting of my stem cells) - 7-8 days up at Cedars Sinai for this 
Part 3: High dose chemo/Transplant - (hospital stay at least 3 weeks, could be longer)
Part 4: Post Transplant 

I am not quite ready to process all that is involved here and now as I am still processing it in my head, but I have a couple months before the fun begins...so there is time. Things start to get real in July so for now, I am going to focus on today and now. I had my 4th round of chemo on April 28/29, followed by a rough week of nausea and bone pain. Today is a better day. 

Cycle 5 is in a couple weeks (May 26/26), I am grateful to at least be on the mend before my birthday! Because you know how much I love birthdays! (Dana - less than 30 shopping days....haha). 

That is all for now...as I said, there is a lot to process... and you know - the only way out is through.

My brain - information overload!

The Future Fork in the Road.

The Unknown possibilities

What I know today.

There is a fork in the road ahead. If I go one way, I get a stem cell transplant. If I go the other way, I get CAR T-Cell Therapy. These are options, I do not get to choose. One is not better than the other. It works like this.

If I am chemosensitive, meaning the cancer is responsive to this chemo, then we continue until I am as cancer free as possible, and I a get stem cell transplant. To get a stem cell transplant(auto), your body has to be disease free, as they harvest your stem cells to later infuse back into your body. 

If I am chemorefractory, meaning the cancer is not responsive to chemo, then I would go the CAR T-cell therapy path. This is a type of immunotherapy. Up until March 5, 2021 I would have only been able to get into a clinical trial which I would have qualified for by having had two lines of treatment that failed. However, on March 5th, the FDA approved CAR T-Cell for patients with Follicular Lymphoma (what are the odds of that happening). With this, they harvest your T-cells and re-engineer or genetically modify them to fight only lymphoma. Then they return them to your body, and they fight the cancer - science is just fucking amazing!

Monday, April 19th - I will have the Petscan to find out which of the above I am. Then I will know more about which way this road will bend...I have done research on both. They both require at least a three-week hospital stay. They both have side effects. They both have success rates.  Every "body" is different. 

I am going to leave it at that. I have learned an incredible amount of information. I am now watching scientist and doctors webinars from all over the country. The Internet is awesome! You wonder why I have anxiety, haha - no just kidding - for me,  knowledge is power. 

Below are some resources/videos for those interested in knowing more.

Stem Cell Transplant and/or  CAR T-Cell Therapy. 

Stem Cell Transplant (Autologous) - PDF with more information

The body is a wonderland!

CAR T-Cell Therapy - PDF with more information

Science is amazing! 

Just a few bumps in the road.....

I have a lot to catch you up on...some of it, really good...with a few bumps along the way. Thanks to one of my best friends for the title of this post, inspired from a card she sent. This is my #livelifedetour - granted a much longer detour than I had expected, so of course, there will be bumps along the way.

 

Anxiety, stress and a side of chest pain...
I started having chest pains Sunday, February 14th (no, my heart wasn't broken on Valentine's Day 😂). The pains were sporadic and sharp and right behind my left breast (where of course, my heart lives) so it was scary. They would come and go but without a pattern. Sometimes, I was sitting still, sometimes I was walking around. On Wednesday during chemo, I mentioned the chest pains, and after checking with the doctor, they recommended seeing a cardiologist ASAP. Okay...but I do not even have a cardiologist - do you? So, I called my "new" primary care physician and was able to get into the office the next day. They did an EKG and checked vitals...all were good. So they referred me to a cardiologist and said if it got worse, go to the ER. (oh my gosh - my anxiety was off the charts). Friday night was the worst...but Saturday and Sunday, the pain become less sporadic. I made it to Tuesday, when I saw the cardiologist. Based on my descriptions, he didn't think it was cardiac related but was still going to order a stress test and echocardiogram. Phew...I went home relieved, yet still anxious.

Earlier that day, I had also spoken with the nurse, and she suggested pepcid and tylenol in case it was reflux related so I had started taking that as well. The pains lessened and turned to pressure at night. I was short of breath but I had also just had chemo 3 weeks in a row and was exhausted.  So I worked through it, and waited for the next test to rule out what it wasn't.  

Finally, last week, the pain and pressure lessened and I had a few good days before cycle 2. What I don't understand is the level of anxiety that came over me. It is so controlling, several days or evenings, I could not get out of my head fast enough before the feeling of a panic attack took over...I find this so dumb and honestly annoying. Thank goodness for my sister, who would talk to me to break the thought processes and some silly singing and dancing around the house when I couldn't get a hold of someone to talk to.  Seriously, I have got to get a grip! 

Reminds me of an Rorschach inkblot test - my lungs

This week, Wednesday and Thursday were chemo days...Dana and Martha tag teamed and sat by my side, so grateful to be able to have them in the room with me. Thanks to Remy and Rachel - rockstar chemo nurses for making it happen.

I saw Dr. Danny (local oncologist). Although, chest pains had subsided, he ordered a CT angiogram (STAT) to make sure there wasn't a blood clot or pneumonia in my lungs. So after chemo on Thursday morning, I went right over to imaging to get the IV contrast CT scan of lungs and chest (thank you Martha for going to that with me too). Scans came back clear.

Friday, was the stress test (checking that off my bucket list). I unofficially passed even after two days of chemo - so I think the heart is good. Still have to do echocardiogram on March 18th but things are looking ok there. Clear lungs, tickers seems healthy, chest pains are gone...so a few bumps but all good.

Latest symptoms: nausea, headache, lack of appetite, fatigue, metallic taste, low platelet counts. Cycle 2 done. 24 days until cycle 3.

Updated 3.9.21: lower back pain and bone pain in legs -30% of patients get this - always fun to be in the lower odds, mouth sores (I call these moving target symptoms....chemo...the gift that keeps on giving!)

Feel Good Files
Tuesday, ended with the biggest surprise!  A CAR PARADE! Yes...for real...over 40 friends and colleagues got together, decorated their cars and drove by my house honking and shouting love and support! It was honestly AH-MAZING! I was blown away....see video below. I definitely felt the love 💕 .

More feel goods from the last couple of weeks....

• Amazing car parade
• Fresh fruit and vegetables delivered from the farmers market
• Beautiful flowers left on my doorstep
• homemade banana bread dropped off
• dinner from neighbors
• lots of texts and messages with love and support
• homemade chicken soup with a side of matzoh balls and a visit from two of my favorite cousins