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! 

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. 

And isn't it ironic? Don't you think?

Here is the irony. Since I was a child, after a traumatic accident which I will tell you about in a minute, I developed a reaction of passing out anytime I saw blood. Now, I am an adult with blood cancer. 

*If you are squeamish, you may want to skip this next part.

If you know me... really well, you know that as a child I had a traumatic accident where I cut my hand wide open on a curtain hook. I was about 7 years old, my sister and I were jumping up and down on my bed (we were not allowed to jump on the beds) throwing around a doll. My mom had recently taken curtains down, but had not removed the hooks yet, oh yes, you know where this is going. Of course, she was not thinking I was going to jump up and down on the bed (since we were not permitted) and then fall into the wall and run my hand along it catching it on the curtain hook. The hook ripped the palm of my hand, starting at my wrist, wide open. It opened up so quickly that the blood came out dark first before it hit the oxygen and turned blood red (even telling this story in written format is hard for me and I am sure many of you are cringing). My parents came flying up the stairs, rushed me to the hospital, and as they wheeled me to the ER, I remember them asking me what color stitches I wanted. I do not recall the color I picked, but I ended up with 98 stitches in my hand and a trauma induced reaction to blood for the rest of my life. 

blurry picture with my best friend,
Brian Gates, after I got my stitches

Initially, if I saw blood, it would cause me to panic and pass out. For the next 40+ years I struggled when I saw blood. There was the time in a doctor's office when Dana had her finger pricked (remember when they did that) and a small band-aid put on. We were told to go to the waiting room while my mom talked to the doctor. My mom said to Dana, "whatever you do - do not show your sister your finger." So, naturally, when we got into the waiting room, she showed me her finger! I looked at it, stood up in a panic and ran head first into the waiting room door before passing out. 

Later, when I shared the story with friends, they decided to test me by periodically showing me their bloody cuts to see if I would pass out. I often did. 

When I became a teacher, I would tell my sixth graders "if you cut yourself, do not come to me, run to the nearest adult because I will not be able to help you." 

I am going to be 55 in a few days and I still struggle sometimes when I cut myself and I call my sister to either talk me through putting a band-aid on or having her come over to help.

Here is the silver lining. That scar, which has since faded, has helped me know which hand is my left for my entire life. If I had to figure it out quickly (without thinking) I would either look at my wrist or, later in life, feel for the scar. It was always so funny to me that I became dependent on my scar to tell left from right.

Then about a month ago, it hit me. How fucking ironic is it that the girl who passes out from blood, gets blood cancer!?

Because I have blood cancer, for the past two years I have had to really get up close and personal with all things BLOOD. I have had to learn all about blood and figure out blood counts, and how cancer attacks my red and white blood cells. I have had to get blood drawn weekly for one year of the last two, and then every 8 weeks, for the other year - that is a lot of blood! In August, in preparation for the stem cell transplant (the harvesting part), I will get hooked up to a machine for 4 hours at a time that will take blood out of one side of my body, have it go through a machine to pull out my stem cells, and then travel back into my body on the other side... lord help me. 

For now, I will focus on all the good things my blood is doing for me (keeping me alive), and I will avoid accidentally cutting myself (especially since my platelets are low) and know that if nothing else, these past two years have made me face one of my biggest fears - and I can actually say that now I can even look at my name on the tubes of blood that they take from me every Monday, Bloody, Monday! 

On a side note: I have had a draft of this post sitting here for the last few weeks, so this morning when I saw Alanis Morissette singing "Ironic" on the Today Show, I saw that as a sign to finish writing it. It's been 25 years since she released the album, Jagged Little Pill - #ironic

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 Me...Checking In

I cannot believe it has been over a month since my last post.  I wish I could say that my absence was due to traveling the world and living life, but really it is because I had nothing earth shattering to share and I was busy working and navigating all the side effects and joy that chemo brings. Let me say...I did not have all of these side effects this past month - but they are like a moving target, and I was blessed with many, some repeats, some new...some not so bad and some just awful...my body is still one big science experiment.

March was filled with good and bad days...and figuring out, once again, that my heart is healthy - and that those chest pains were probably a combination of chemo and stress.  I have to emphasize here, how serious anxiety and stress are. I know we have all had our share of it, especially over the last year...but that shit is no joke. The mind is a powerful thing, and when stress and anxiety start to show in the form of pain in the body - it is time to sit up and listen.  I do not have any brilliant answers, but I did find some things to cope with it that are not drug or alcohol related (bummer, I know, lol).  The real trick is to get out of your own head (and for me, not playing Dr. Google - goes a long way too) and find true distraction! Find ways to relax, get distracted, talk to people, get distracted, breathe, and get more distracted...and it eventually passes. But it is scary. 

March was spent with lots of wondering. Wondering if I was going to lose my hair (not yet). Weekly wonderings if my blood counts were going to drop so low I would need nuelesta or zarnio (white blood cell boosters - read about how well that went last time here). Wondering if my echocardiogram was going to come back with a good result (luckily it did), and learning more about what options lay ahead...

March was also filled with long work days, both for NMUSD and CSUF, grateful for the ability to still work, and a visit from one of my best friends from high school and college - lots of laughs and love there.

I also got the first dose of the COVID - Vaccine (Pfizer) on March 20th - sore arm for a day. All 3 of my oncologists (two specialists) really wanted me to. Their reasoning was that although, each month, we are killing my immune system with chemo, thus weakening the benefits of the vaccine; having some vaccine versus none in my body, will help when I am in the hospital. The irony is that once I get a stem cell transplant, I will have a brand new immune system and would need all vaccines again. 🤦‍♀️(still have not gotten second dose - read why below).

I finished chemo cycle three on March 31st/April 1st. It was the roughest week yet, but I made it through. Today is day 13 after chemo - days 10-14 are supposed to be when this chemo does its work. Today is an ok day. I have learned that ok and good days should be celebrated - so yay for an ok day! 

Dr. Danny (local oncologist) decided that we should do a pet scan before cycle 4 (it was supposed to be after) but this way we know if chemo is working. I have had pain and discomfort in my neck. Some of it is from the terrible placement of the port catheter - as it lays right over my collar bone and connect to my right jugular vein - there is tension there - basically that constant reminder - yes - you have this port in your body - don't forget about me...I am here. The other discomfort and pain might be from swollen lymph nodes which would mean that the chemo is not working as those should be shrinking. The reason, we pushed the 2nd dose of vaccine is that one of the side effects is swollen lymph nodes - so we waited long enough from the first dose and pushed the second to squeeze in a pet scan - scheduled for Monday, April 19th - 7:30am - send the positive vibes my way please! I am not sure what we are praying for as there are two ways this can go - and honestly - I am not sure if there is an option that is better or not. I will write about what I know about the two options in another post. I am lucky to have options, I know,

Until the next post, I will once again, thank my army of people that continue to check in, send cards,  flowers, drop off lemon cookies (yum), and homemade soup, drive me to appointments, walk slow with me, or throw balls to my dogs. You are greatly appreciated. To the rest of you, who I know continue to pray for me, daily, send me good positive vibes...I am grateful. 💚💚💚

Family ❤️

Lemon cookies 💛

Back Bay walks (slow)

Laura and I - sunset

LJ's last night in town

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

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.

Let's Get this Party Started!

haha - this is a party, right?....if I did not react with humor, we would never make it through this again. So let's do this! 

 Here is my reality...last week I lived between "what the fuck?" and "holy shit!!" Only way to describe the emotions that I experienced. There was so much to process. I waited each day for more information. A call from the doctors. Next steps. A timeline...some control to what was going on,

 I spent my days either distracting myself with Netflix, cooking, or work outs, of course that was when I wasn't researching "stem cell transplant," "relapse follicular lymphoma," "Diffuse large B-cell lymphoma." I know, I know,... stay off the Internet - but that is not me - I like information, the more informed I am, the more informed my decisions are. That said...I also made conscious efforts (with the help and advice of family & friends) to try to find joy in each day and of course, with THREE ridiculously silly Labrador Retrievers in the house - that was not too difficult. They honestly make me laugh EVERY day! 

Once I made it to Monday again - a week after hearing the news, I was calmer. Trying to be ok without being in control (oh how I hate that though). Yesterday, I decided it was a good thing I wasn't hearing from the doctors and that I should enjoy this infusion free, chemo free, no doctor time as my future promised much of that. Of course, the minute I let go of that, I got a call from my oncologist with an update. My current oncologist, Dr. Danny, had spoken with Cedar Sinai specialist, Dr. Darrah (keep up now) and they planned out a treatment plan. Starting with "baby chemo" as Cedar doc calls it.  The newest cocktail made up of Bendamustine and Gazyva (really - who makes these names up) - it is a strong cocktail! I will have 4-6 treatments, given every 4 weeks.

One of the things I love most about these drugs is how they list the side effects - and I don't share this to scare you (although I am a bit frightened...) but because, really? We have to put this on the Internet...

Bendamustine: Most common side effects include: fatigue, fever, nausea, and vomiting, diarrhea, constipation, loss of appetite, cough, headache, weight loss, difficulty breathing, rash, mouth irritation, low red blood cells (oxygen-carrying cells), low platelets (blood-clotting cells), and decreased number of three different types of white blood cells (infection-fighting cells). WAIT...it gets better...

These are not all of the possible side effects of BENDEKA. For more information ask your healthcare provider.

Gazyva: The most common adverse reactions (incidence ≥20%) in GAZYVA recipients included infusion-related reactions, fatigue, neutropenia, cough, upper respiratory tract infections, and musculoskeletal pain.

OK... so...I know- everyone is different and I most likely will not get ALL of these side effects...but when your oncologist schedules you for a "teaching appointment" the day before your first round of chemo, to go over all of the side effects...your spidey senses start tingling... and yes - although last night, Dr. Danny said - "get your port placed and then schedule your first round of chemo - (oh yeah did I mention, I get to have that lovely port placed back in my chest? This is helpful when the drugs are too strong to go through you arm veins and cause them to "burn") - but then the oncologist office calls and says - we are not going to wait for the port - we are going to get started - next Wednesday February 3rd...um yes....like in 7 days. Ironically, almost 2 years exactly to the day(minus 3 days) from my first round of chemo - January 30, 2019. 

So, yes...here "we" go! The party is starting...do not miss it! 

"We" have put the armor on,"we" are posturing, "we" are strong and "we" are going to fight like hell - (I love saying "we" because while I know you are all there - cheering me on, I also know, I am the one fighting, but but by saying "we" I feel like we are doing it together....). So, YES... let's do this! 

Grateful for my army. 💚💚💚