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. 💚💚💚

Putting Back on My Armor.....cause as my sister says, they are pulling out the BIG GUNS!

Walked this road today...
felt like what lies ahead

The waiting is over. Petscan results are in. Cancer has spread. Not exactly the outcome we wanted, I know. But..now we fight harder. The #livelifedetour just took a nasty turn up a steep hill but I can make it. 

What we know. Radiation is off the table. Cancer spread to my chest as well as my neck.
What I have learned over the last five days.

1. Follicular Lymphoma (FL) never really goes away. It hides in areas that are undetected by a CT/PET scan. 
2. It is something I will not likely die from, but I will die with. It will wax and wane for the rest of my life.
3. Every "body" acts differently with FL. 
4. Generally, if it stays away for the first two years, there is a better chance for it to not come back for 5-10 years. and they call that indolent (slow growing).
5. To determine the 2 year mark, they calculate from the chemotherapy treatment (January 30, 2019) as the start date and the date of the scan that detected the cancer was back (November 27, 2020) - I was so close!!!! But am now classified as having the more aggressive type of lymphoma. (Yay for me).
6. Radiation is effective to fight "one spot/area" - so once it moved past my neck, it was not an option. (guess I will have to put that back on the bucket list).
7. Since this is going to continue to grow and spread, the best course of action is a Stem Cell Transplant. (I always like to be informed and in case you do too - but don't go too far down the rabbit hole)

I cannot even believe I am writing this right now. I found this all out on Wednesday, and have had a few days to process and research, but it is still very surreal. The reason this is the best treatment plan is that it allows them to give me a high dose of chemotherapy that will knock the fuck out of the lymphoma, as well as the rest of my cells in my body - and then they will replace them with my own stem cells (that they harvested before they started) - which is called autologous stem cell transplant (your own cells).  In the end, I will have a brand new immune system and will have a break from the lymphoma returning as quickly. 

The bonus to this treatment plan, is that we have to knock down the current cancer that is hanging around so I have to go through another round of chemotherapy to prepare my body for the stem cell transplant/high dose chemo - and I get to lose all of my hair again because once in a lifetime wasn't enough - and get that port-a-catheter placed back in my chest!  I see good times ahead. 

There is so much more to all of this, but I am still processing. I will keep you informed as writing this also helps me to process... I literally just talked to the doctors today so they are going to meet and discuss a treatment plan and get back to me this week.  

I am grateful for all the prayers, positive vibes/thoughts, check ins, mojo and magic....keep it coming my way. We have a rough road ahead...but as you know...I am a fucking warrior and the only way out is through.... love to you all! 💚💚💚

2021: with a side of Déjà Vu

Happy New Year. Something about this feels too familiar...New year, same me

Two years ago, on this day...I got that Friday evening call you don't want from your doctor stating that it looked like I had some type of lymphoma (see timeline and post here). Ironically, today, I consulted with a radiation oncologist to determine if radiation was a viable treatment option for this relapse.
The good news is, yes, if the cancer is only in the lymph nodes in my neck, then for about 4 weeks (5 days a week), radiation therapy would be the plan. The unknown, is whether the cancer has spread. I have been getting CT scans for the last year, as they pick up enlarged lymph nodes, however they do not pick up cancer like the PetScan can. So, next step is getting a Petscan (and lots of positive thoughts and prayers that cancer has not spread). If lymphoma has spread to other parts of the body, radiation is not going to work.

So, we schedule the Petscan, and also schedule the simulation scan (something they do to get you prepared for radiation therapy) and we wait. 

I mentioned in my last post,  a follow up with my incredible UCLA doctor. He is part of my "team" or he was until on December 24th when my insurance denied the request for the authorization to see him. They claim that UCLA is now "not in network" but I can go to Cedar Sinai. WTF! Seriously? (I mean, I am not saying Cedar Sinai is not a reputable place), but I have an established relationship with Dr. DeVos, and am already a patient of his. So now, I have to start all over with a new doctor? Ugh. After a few calls, I was told I could appeal the decision. So I am now waiting on that...could take up to 30 days. 🤷‍♀️  in the meantime, I am scheduling an appointment with Cedar Sinai, just in case and a second, "second opinion" couldn't hurt. I swear, it is like a full time job navigating all of this...and exhausting -I am a bit numb. 

Luckily, I am blessed with an army of incredible people, to support me and I have to say that the love and support you all have shown over the last couple of weeks (and years) is nothing short of amazing. I could not do this without all the energy and positive vibes coming my way. 💚💚💚 

It's Been a Minute or Two.

 Let me start by saying, Wow, how have I really not posted since January 2, 2020?  Part of me is not surprised....2020 has been a total #shitshow. Who wants to document it in writing...but we were getting through it - I mean we are 16 days out. Christmas is almost here! 

So why now? What made me come back here to post...mostly to say FUCK, FUCK, FUCK! Fuck cancer! Fuck cancer for coming back. Yup. It is back. Fuck. (sorry if I am offending anyone here - but that is the only word that sums it all up). 

I was getting through 2020, like everyone else - well ok, not exactly like everyone else but I was getting through.... 2020 has been filled with: infusions every 8 weeks; Scans every 6 months; working from home for 9 months now (grateful for a job); staying connected to humans and seeing a few people IRL (in real life). Zoomed out and counting down until March 24, 2021 - when I was to have my last scheduled infusion (12 out of 12). Screech....that is not going to work.

Here is what happened. 

November 27th, I went for my 6 month scan expecting it to come back clean like the last 3 scans. 

On December 2nd, I was having my 10th infusion and asked about my scans. They said that one of the lymph nodes on my neck (that they had been watching) had doubled in size and any time a lymph node measures over 1 CM (I know that seems so small), they have to check it out. If you remember, this all started with a lump in my neck back in December 2018. 

December 9th I had an ultrasound and a fine needle aspiration biopsy. 

On December 10th, I saw the radiology report show up in my portal (being the doctor that I am not), I reviewed it. I also compared it to the same report from January 15, 2019 - and the language was the same - in fact the report was almost identical with the exception of the lymph node being 2.5 CM now (3.5CM on 1/15/19), and there were multiple abnormal (why be normal) lymph nodes on both side of my neck. This did not make me happy - but I had to wait for confirmation from the real doctor as well as the pathology report.

December 14th, Last night, I got the call from my oncologist. He said, lymphoma is back. [FUCK!] Well, he didn't say the F-word. 

So what does that mean? Follicular lymphoma is a non-Hodgkins's lymphoma (NHL). It is a cancer that affects white blood cells called lymphocytes. They help your body fight infections.  

"Although many patients can have a remission that lasts many years after their initial treatment for follicular lymphoma (FL) - the disease will return. Typical signs of a relapse include symptoms similar to when you were diagnosed such as new rapidly growing nodes. Relapse is most likely to happen within the first 2 years after treatment."

It likes to comes back (WTF). The plan was to keep it away for 2 years and then the chances of keeping it away for 5-10 years was greater...but it is 2020 - so it came back. 

What is next? I go back to the UCLA specialist to get his opinion ( I love that about my local oncologist). I also have to consult with a radiation oncologist, as he thinks that they may be able to treat it with focal radiation. That is as much as I know right now. I am holding it together...what are my choices...

You know....the only way out is through - so this warrior is going to fight her way out.  You can expect more frequent updates, if for no other reason, for me to get it out - and document this #livelifedetour.

Prayers, good vibes, healing thoughts, magic and miracles are all welcome. 💚💚💚

Reflecting on 2019 and Looking Forward to 2020

As many people do this time of year, I have spent the last few days reflecting. January 4th will be a year since I was initially told I had some type of cancer. I still remember the phone call and the weeks that followed. January 2019 was a crazy month - and while I am happy it is behind me I am going to take a minute to reflect on just how crazy it was...

January 4th - CT Scan with contrast - initial diagnosis
January 10th - Bloodwork
January 15th - Lymph node Biopsy
January 16th - Mom had an 18-hour stroke
January 22nd - PET scan
January 23rd - Oncologist Appointment and confirmed diagnosis
January 24th - More bloodwork
January 25th - Bone marrow Biopsy
January 28th - Port-a-Cath placement in Chest
January 30th - Day 1 Chemo (9-hour infusion - due to the adverse reaction to meds)
January 31st - Day 2 Chemo (3.5-hour infusion - leftover from Day 1)

The year, as you know, continued with 5 more rounds of chemo and all of the challenges that came with that - I had an incredible support team of family and friends and on July 8th - my scans came back clean! Yay! Yes, Yay!

But that is what was so hard for me - my scans were clean - BUT I was still struggling with side effects, after effects, future effects - of chemo and continued infusions - "the gift that keeps on giving." The inability to be "superwoman" and work long days and not be exhausted by it, or the black marks that have shown up under my toenails, or the process of growing my hair back (and it is a process) - life is just a little harder right now. I lack patience, I want things back the way they were before my diagnosis, I want my body back, my hair back, and my energy back.

My biggest challenge is that I want to put cancer away, put it behind me, but it doesn't work that way. The truth is, I am not the same - so even if I could find a box to put it in - I am still over here trying to figure out just who I am now - of course - in many ways, I am the same, but there are just enough ways - that I am a little different.

This week I have had more bloodwork, another CT scan with contrast, I am getting my 4th of 12 infusions right now and a Petscan Tomorrow. ..so you see while my scans are clean today - I am still in it and honestly, that just sucks. This is why it took me 6 months to write this follow up post - because I feel like I am supposed to be screaming "hooray" from the rooftops and running around so happy - and yes - there are days I am, but there are also days I am not.

I am writing this to help you understand the #livelifedetour I am still on - and while I am in a much better place than the first half of this year - it is still difficult. I find myself doing things that make me feel in control of my life like getting tattoos, piercing my ears, getting crazy fade hairstyles) -  those are decisions I am making, I am choosing. I am learning to say "thank you" when someone tells me they like my haircut (when I really want to say - I did not CUT my hair) and I am learning to have grace and patience with my body. Not so easy either.

Oh and yes “Sign ups are available” for those looking to sit with me for a 5-6 hour infusion. 😂 🤣 I am joking. Kind of. 😂 I can’t drive on these day so if your bored (first get a life) And then text me. 8 more to go!   Thanks to my awesome friends for doing the first 4.

That’s me checking in from this Livelifedetour!!
#cancerstillstucks #livelifedetour #grateful #2020

I Made it Out!

My mantra for the past 7 months has been "the only way out is through," and today I am happy to announce that I made it out!! Cancer Free Today!

I MADE IT OUT!

So, if you have been following along you know yesterday was a BIG DAY! Seven weeks after my last chemo treatment I had a PETscan. The scan itself is really not a big deal, other than you have to fast, which means no morning coffee, but all in all - a little radioactive tracer into your bloodstream, an hour in a dark, cold room to marinate, and then 12 minutes in the tube - DONE.  The hardest part of the day was waiting, waiting to hear from the doctor.  Luckily, at 5:18 pm I got the call. He said I got your scan results. The report says "no signs of disease!!!" and he followed with "complete response to the chemo, do you have any questions?"  I said, "does that mean I am in remission?" He paused and said, "I guess you could say that." - I thought you guess?? Ok - I am going with "I am in remission!!" No sign of the disease and complete response to chemo also work for me!! Can you say "CANCER FREE?" - I am so excited! Really in shock, although I said I would stand for nothing less, I was scared to know the outcome. Scared that if I wasn't in remission that I would not be able to handle it (although we all know I would). The great news is I don't have to worry about that anymore.

So, what is next? Celebrating, of course! Travel, of course. and... my maintenance infusions- they start next week (and every 8 weeks after that for 2 years) - which means, tomorrow I give blood and next week, I hook up to an IV for 4 hours and get Rituxan pumped into my body. I cannot lie, I wish I did not have to put more drugs into my body - but this is to keep cancer AWAY. So I have no choice, as that shit is not welcomed back in my blood or anywhere in my body for that matter! Once I get through next week and see how my body reacts to just the Rituxan, I think I will be even more excited to move on from this #livelifedetour. 

For now, I am just smiling. So happy to be cancer free. So blessed to have had it so easy (as easy as 6 rounds of aggressive chemo for Stage 4 cancer can be). But I know, it could have been worse. So grateful for my army of people (family, friends and colleagues) that showed up every day in every way to show that they were there for me. Cheering me on, sending love, hugs, and positive vibes! I really would not have made it through without all of you! Yay!!!

#kickedcancersass, #backtolivinglifeagain, #warrior, #grateful, #blessed, #imadeitout

From 0 to 60 in 6 Weeks

Thinking back to the last 6 weeks since my last round of chemo, I really went from 0 to 60.

• That first week (realizing chemo was really over) I was so happy that I walked around like I felt better than I really did - just high on the reality of no more chemo!!! I still moved at a slower pace and got 3 more Zarxio shots that week.  
• Two weeks after, I started to get back into the groove - I celebrated my birthday, got my port surgically removed and went to Laguna Beach for a sister's weekend. 
• Week Three: I returned to the gym, went back to working full time and teaching summer session at CSUF.  This was the week I also found myself super angry about having cancer. I took action (haha) - I unfollowed any support group or person that I had followed on social media and put all my cancer books, blankets, and tanks away - I really wanted to burn them all. I did not want to identify myself as someone with cancer. I know this sounds silly - no getting around it - but I wanted to have my life back- and the word cancer stripped from my vocabulary. Obviously, this was not possible and walking around with peach fuzz on my head was a dead give away.
• Week Four: Still angry but realizing I had to get over that - I focused on work and the gym. I gained some weight from the prednisone and chemo - and sitting on my ass for the last couple of months. This also annoys me. I want my fit body back now. 
• Week Five: Still dealing with so many emotions - happiness, vulnerability, frustration, uncertainty, anger, and excitment, to name a few. I feel blessed to have gotten through 6 rounds of chemo and come back so strong. Many of my friends and family worried about my 0 to 60 mindset and thought I was overdoing it - but mentally - I needed that. I had to get back to living. What was going to happen to me? I would get tired? Full speed ahead to the best of my ability.
• Here we are, entering Week Six - I am anxious - one week from today (July 8th), I will have my PETscan to find out exactly how well the chemo worked (remember we are not accepting anything other than 100% remission). I am still struggling to lose the weight - I know 8 pounds - is nothing - but it is driving me crazy - my body is holding on to it like it still needs it - trust me - let it go - we will all be happier - haha. July 17th is the first maintenance infusion of Rituxan (every 8 weeks for 2 years) - side effects should be minimal - maybe 1 - 2 days of fatigue. July is slower at work and a time for me to enjoy getting healthy. I am working on that.

I keep hearing things that I really need to remember as I go into the next 6 months of this year:

1. I just battled cancer.
2. I should not be so hard on myself.
3. Be where you are and be ok with it.
4. My path will reveal itself.
5. Be ok with the process.
6. Enjoy the moments. 

I will update you all next week, with the great news and we can all celebrate together! 

For now, I will work on remembering to enjoy the process and the fact that I look like a chia pet. 😂😂😂

What is Next for my Live Life Detour?

Ready to live life again...

Checking in after Round 6! Yes, my last round of chemotherapy. Even writing those words still seems so surreal. Did the last 5 months really happen? Did I really go through that? Some days, I feel like I tucked my head in, closed my eyes and hoped tomorrow would come. Tomorrow did come, and I made it through this part of my #livelifedetour. As you know, the last couple of months were not easy, the side effects were many and like a moving target through my body. I struggled with my blood counts and the bone pain that came with the growth hormone shots to increase those counts. I also hate prednisone. I hate how it made me feel, how it changed my body (I call it the prednisone plump), and how it robbed me of sleep and peace. The good news is that I am done with the poison and the prednisone. So what next? While this is definitely a milestone worthy of celebrating, I am not quite done with this fight. Looking Ahead.

Causes for Celebration:

1. Chemotherapy is over! 
2. My Birthday is in 9 days! - June 5th in case you are wondering!
3. June 6th the port-a-catheter is being removed from my chest - Happy Birthday to me!
4. Every day, I will feel a little better
5. My hair is slowly growing back - and I might just make it platinum blonde - #whynot 
6. Only 2 more Mondays of giving blood every week
7. As soon as my immune system is stronger, I can get back to the gym 
8. The sun is shining! 

Bumps Ahead in the Road:

1. Every 8 weeks, I have to get a 4-hour maintenance infusion for 2 years - the Rituxan (yes that antibody with the part human/part mouse combo 😠) 
2. I have to wait until the end of July for my PETscan. This will show that I am in 100% remission, which is the only option I am allowing! 
3. The fatigue that I fight daily will not just go away.

I have to again thank everyone out there! On my last day of chemotherapy, I posted on social media and the outpouring of love and support was - well it was - WOW! Amazing, overwhelming, and uplifting.  It is crazy how that works. Just a few words here and there - and you can feel the love. It really helps me get through the rough patches. So thank you. Thank you for taking the time out of your busy day to just say something. Love you all! 💚💚💚

I also have to thank those of you that continue to show up or send cards, flowers, candles, angels, steaks (yes to help with my blood counts -iron), and trees (a money tree for good fortune). Human kindness is alive and I am so fortunate to have so many people out there that care about me.

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.