Be Brave, Be Strong, Be Fearless...

Round Two Chemotherapy
Tuesday, February 26th was my second round of chemotherapy. We did things a little differently so that we could have less adverse reactions than we did with round one. No prednisone during the day of chemo and took Ativan to relax me beforehand. A typical infusion rate of R-Chop is 6-7 hours. Round 1 took 12.5 hours, but round 2, we finished in 7.5 hours! Great improvement. We had 2 different adverse reactions, the first being heavy chest and shortness of breath with lower back pain, they slowed the drip down and it went away. A little later, I started sneezing and head got super congested, again slowed the drip down and that decreased. It is like a moving target in my body as the drugs flow through my veins. The day actually goes really fast as there are so many moving parts and distractions. Dana and I manage to entertain ourselves as I never can just fall asleep. Pacific Shores Oncology is an awesome place if you have to go to a place like this. The staff is really amazing and so helpful. Some of my favorites are Remy, Shawna, and Tammy and of course Dr. Danny. But they are really all wonderful. Thank you for taking such great care of me.

Dynamic Duo

Each round, Dana and I wear different shirts with sayings on them. (It is just our thing 😏).

• Round 1: I am, I can, I will, I do (inspired by Peloton Instructor)
• Round 2: Be Brave, Be Strong, Be Fearless 

***For those interested in the type of chemotherapy I am having (I am learning so much right now), below is the name and breakdown of the chemo cocktail.

R-CHOP is used to treat non-Hodgkin lymphoma (NHL). 

CHOP comes from the initials of the drugs used:

• R – rituximab  (Rituximab is not a chemotherapy drug. It is a targeted therapy and belongs to a group of drugs called monoclonal antibodies. -This is the drug that gives me the most trouble - part human/part mouse antibody - ya think?? Of course, my body is rejecting it - it has part mouse antibody in it for god's sake - ew.)

• C – cyclophosphamide

Red Devil

• H – doxorubicin (hydroxydaunomycin) -(also known as the "red devil" - goes in red, comes out red and is the CAUSE of hair loss - thank you, NOT) 

• O – vincristine (Oncovin®)

• P – prednisolone (a steroid) - At 100 mg a day, I hate this, makes me super hyper, amped and difficult to sleep) - take this orally for 5 days each chemo cycle.

#f#@kcancer

Peace!

Quick Update: Today, I went back for Injection 1 of 3 of Zarxio (do not read the side effects - I don't). Zarxio is a man-made form of granulocyte colony-stimulating factor (G-CSF) called filgrastim. G-CSF is a natural substance produced by the body. The purpose of G-CSF is to stimulate the growth of neutrophils, a type of white blood cell important in the body's fight against infection. My neutrophils keep dropping - they come back but when they drop it is lower than they prefer. The biggest side effect I will have is that it will cause my bones to ache. Whose bones don't ache at 52?  Injection 2 and 3 - Friday and Saturday!! And now, I am done educating you people for today! #lifelonglearner

 

Trying to Embrace my New "BADASS" Look

#mysisterismysuperpower

So yesterday, this happened. I am still a bit numb about it all but it is another "new normal" so I am trying to embrace it. One thing I knew for certain, from the second I got my confirmed diagnosis, was that I was absolutely going to lose my hair. My oncologist said it like this to me, "You have Follicular Lymphoma, it is treatable, you are going to lose your hair." It was the third thing he said to me. Then my adorable chemo nurse, Remy, said very clearly, over and over, this red medicine (because it is dyed red in the IV bag) will cause you to lose your hair. It was pretty much a definite thing. They all said, 14-21 days after first treatment, you will start to lose your hair. They said, by the time you come back, 3 weeks later for cycle 2, most people have lost their hair. I saw Remy on Day 12. I said, "I am going to be that one person that doesn't lose her hair." He said, "you had the red medicine, right?" I said "yes." He said, "well then, yes, you would be that one person." Because everyone else has lost their hair - 😩-

On that same day, I had a free wig/scarf consultation with Hoag Cancer Center's Brighter Image program. An amazing free program for cancer patients. I met with Karrie York, a cancer survivor/consultant, and we tried on at least 10 different wigs, and 20 different scarves, beanies, bandanas and she showed me how to style them. It was all very surreal, especially because I still had hair. You get one free wig (high quality), and as many headpieces as you want (amazing program). I left with 4 wigs to try on with my family and at least 20 different options for my head, It was all so overwhelming. The beanies, etc. all looked really cute, WITH HAIR, and how fun to try on different wigs, different styles, different lengths and colors when I HAD HAIR. That was all on Tuesday.

On Thursday, Day 14 (remember hair loss happens between Day 14-21), I couldn't sleep. I kept thinking is today the day? What will it be like, how will it happen? Then I had what they call the "hair headache" all night. They say that about 2 days after you get this headache, the hair will start falling out - I did not believe them. UGH. They were so right. I had that headache right smack on DAY 14, and the next day, my hair just started to come out. I literally could pull bunches of it out, like you would find in a hairbrush you haven't cleaned for a few weeks. The average person loses about 100 hairs a day, I was losing about 100,000  (I suck at math though). No one could tell unless I showed them. Saturday, it got worse. I was obsessing over it, anxious about it and stressing over finding a bald spot. I cleaned the shower drain and my brushes every day (like I always do - ha), I switched to shampooing with baby shampoo and not using any heat to style my hair. Then I showered on Sunday morning, and it was like I left a small animal, no, let's say a medium-sized animal in the drain. It was awful and I knew that that was the day, I had to get rid of my hair. The negative energy that I was using to focus on it was not good for me. So I reached out to my friend and hair stylist for the past 20 years and asked her if she would help me. I am so grateful for her. My sister (my superpower) and I met her at Shanghai Hair Salon (a little marketing - awesome place with amazing stylists/people). It was closed, so it was just us. I still had hair, so she carefully cut it, stopping at different lengths and styles to see what we could do when it grew back, and then pulled out the buzzer! Off it came, all the way down to peach fuzz. I was emotionless, numb, I had cried and stressed over this all week and now it was happening. I think I was just glad to get past this. To face this dragon in front of me, and move to the other side. The only way out is through and this is part of this #livelifedetour.

#f#@kcancer

So it happened, Patty and Dana were so loving and compassionate. Apparently, I have a great head shape with no bumps, who knew. We took some selfies and it was done. We sent some pics to close friends to get feedback. The overall most used word to describe my new look was "you look badass." I guess it could be so much worse and with the fight that I have ahead of me, looking a little badass isn't such a bad thing.
I cannot lie, it will take some getting used to - but I want to thank all of my family and friends who responded with the comments below. I mean really, what else do you say to someone with cancer who just shaved their head. But thank you for saying it. (This blog post is my first step in going out in public -give me strength 💚.) #feelingvulnerable

Comments from my amazing friends and family!

• You look like a badass now!!!!  I like it♥️♥️♥️
• Omg. No tears necessary. You look so good!  Dang. Seriously you own that look! I actually love it!
• I promised not to try and make you feel better about it cuz we have to be honest but you look kinda badass
• It goes great with your beautiful awesome smile!! ❤
• So badass!!
• You look AWESOME!! 
• Kick some cancer ass, girlfriend!!
• You look fucking awesome ! 
• You look like a total badass!
• Your head looks beautiful. 😍😍
• I saw some hot pics of you today with your hair really short.
• You're still beautiful as ever!  
• Look good!!!!!
• Oh jenith  so beautiful xoxo. You look so rock and roll!! Xoxo
• You rock it!!! Xoxoxoxoxox
• Jenith u look great!!!!....ur natural beauty just enhances ur face!!!....I WOULD TOTALLY DO U!!!😚😉 U..SEX POT!
• Darlin, you are beautiful!!!
• You look awesome, what a great smile even after everything you are going through 😀
• Years ago people didn’t know how to react to people going through treatment, today I think it’s a badge of honor and you Rock it!!!
• Beautiful as always. 
• Ok. Wow!!  Obviously not what you wanted, but I think you look super cute!!  I swear only you could pull off that look! 😎
• You’ve got the perfect head!  You don’t even need tanner. 😀 You could definitely rock as is😘
• You look amazing!!!!! Badass for sure! You have a good head for your new style 😀 You and your sister are so cute, so awesome to have that bond 
• You rock it better than I do. Wear exactly that outfit on Thursday and don't field any questions 😀 ... come to think of it nobody's going to ask you any questions anyway. You look like a beautiful badass MF.
• Omg you rock Beautiful!! 💞

Those Who Know Me, Know I am a bit of an Overachiever...even with my Bone Marrow.

So why should things be any different now? Yesterday, I got my pathology report back for my bone marrow biopsy. We were waiting for the results for 2 weeks. This would determine if the cancer had spread into my bone marrow.  When I say, I got the report, I mean, my patient portal notified me that a new report was available. So at 5am, I got online and read the report. The statements that stood out to me were:

"Overall changes are compatible with extensive marrow involvement by follicular lymphoma" and "Final Diagnosis of Bone Marrow biopsy -  involved by follicular lymphoma (approximately 90% involvement of a hypercellular marrow with mild granulocytic hyperplasia)." 

Now, I know, I did not study pathology or go to med school but I can read and am an excellent googler.  So I took those statements and did my own bit of online research. What I learned was that this put me into Stage 4 for certain, but that most likely, the current treatment I was having would not change for now. Luckily, I only had to wait about 36 hours to see my oncologist. So, he basically said the same thing. With the addition of a possible bone marrow transplant at some point. Some prefer to do that during chemo while others prefer to wait. So now, I am going to see a new doctor for a second opinion, per my doctor's request. He wants me to go to UCLA to see someone (he knows a guy) who is a hematologist that also does clinical trials and specializes in bone marrow transplants.  I like the way he thinks.

Other than that, my weekly blood draws look good, I am slightly anemic,  WBC is a little low but expected to be during chemo. I was reminded to eat every 2 hours -  since I lost a few pounds this week. They would not have known since I wore extra clothes and UGG boots (on purpose) and weighed in the same, BUT my sweet sister (still my superpower) tattled on me - haha. 

I have 2 weeks until my next chemo cycle -  just have to keep taking care of myself, stay away from germs, and eat a high fiber, high protein diet every 2 hours. 👊💪👌👍

##myssisterismysuperpower  #f#@kcancer 💚💚💚

Yesterday, I Got My Smile Back.

Yesterday, I got my smile back! I felt more like myself than I have in weeks. Although, not 100%, THIS I can handle. I had more energy and less nausea, no appetite but that may just be another new norm. I drank all 3 quarts of water that I am supposed to drink daily and ate solid nutrition. The sun was shining. It was a good day. 😀

The funny thing about walking around with "cancer" is that everything is just a little different. Although I am the same, I am not really the same. Aside, from the havoc, the disease is wreaking inside my body, my attitude is different. I am more grateful for, more compassionate to, and more humbled by LIFE. The little things just do not matter anymore and what does matter is so simple - family and friends. 💗

While yesterday was my best day yet, it was also filled with a little anxiety - my mom was discharged from the hospital. We did not know at all how it was going to be. She had been in the hospital for 21 days. We had a brief talk with her before leaving as she was anxious as well. Explaining how things would work and the "plan." We packed her up and they wheeled her out in a wheelchair (hospital rules - and a lot faster than walking).  She surprised us both - as she got into my Big Red Jeep with little issue and attempted to buckle in. She was so happy to be "sprung" and remember "the sun was shining!" - It was a good day. We got to Dana's and she walked in with us cautiously by her side - but no cane, no walker, no wheelchair. The dogs even behaved (they are so smart), and it was done. She was home (or at least her temporary living space - my sister the Saint). She sat on the couch, got love from her Grandkids and some extra dog licks, talked on the phone to her sister, and drank a perrier. Life was good. She was smiling and said, "I am so happy." - we had dinner mixed with lots of laughs as we discussed what happened to her (seems to not stick - 50 First Strokes), and drill her on the dog's names, the kids' names and where she was for 21 days. We shared some of the funny "hospital stories," because through it all, there were some very funny moments, and as I was getting ready to leave - I said to Dana - "that was really fun." and it was - we were all there and all "ok" at that moment. We are cautiously optimistic about the future and my mom's progress - our goal is that she live independently again with distant supervision. We still need lot's of prayers and positive vibes for her - she has a long road ahead. I made a deal with her that I will stay strong for her if she promises to get strong for me. She agreed.
#myssisterismysuperpower #holysh*tmomhadastroke #f#@kcancer 💚💚💚

Overwhelmed by Everything but Mostly by People and their Kindness

Yesterday, I managed to get into the office for a few hours. I figured I was fatigued and feeling crappy, and maybe going to work would make me feel better or at least a little normal. Once in the office, I caught up with some of my team before heading into a weekly meeting. Feeling somewhat overwhelmed and a little disconnected, I sat in this meeting for a good hour before retreating to my office. Everything, including my mom, feels a little overwhelming right now. Once back in my office, my team wanted to share a beautiful basket of "Feel Good" Items they had collected for me. Overwhelmed by the kindness exhibited by everyone, they walked me through the contents of the basket. Each item was so special and I knew it was selected with the simple idea that it would make me feel better (now or later) as I travel down this #Livelife Detour. I just wanted to publicly thank each and every one of you - your kindness is awesome and a bit overwhelming (the new normal).

Incredible Items Included: A cozy blanket, fuzzy socks, softest PJs ever, a "J" mug, deck of Yoga cards, a personalized awesome Hydra flask (hydration is key), some magazines about "Bad Ass" woman, a strength and energy candle, a keychain supporting Lymphoma, an envelope filled with dog walking funds (omg - so needed this), and a journal like no other...the journal included pictures, notes and inspirational quotes (along with some gift cards, more dog walking $$$ and recommended reading), the notes were from so many of my friends and colleagues - filled with love, prayers, and positive "kick cancer's ass" attitude. Thank you to everyone that contributed to this - you really are amazing and I so appreciate all the love and support.

 PS. Mom did not get discharged yesterday, she will come home tomorrow (21 days later). Every day is a better day for me...looking forward to the weekend - Hospital free zone!!

1 Week/19 Days - The only Way Out is Through...

So here we are... 1-week post-Chemo Cycle 1 - and 19 Days with Mom in hospital.  I will not lie, the last week has been rough - I felt like a truck ran me over and just kept rolling over me every day. It is humbling, annoying and frustrating to go from being super active, in the gym 5 days a week,  working 2 jobs, traveling, living life, and then all of a sudden, you have to rest between the house and the mailbox (WTF). The fatigue and nausea are awful and the overall crappy feeling. But each day, I wake up thinking today is the day! Today, I will feel better. I go through the motions. I make the coffee, feed the dogs, make some breakfast and sit to watch the news...unlike a typical morning, these past few days, the dogs get two breakfasts, the coffee goes in the sink and I end up vertically on the couch. But yesterday, I thought, what if this is the new normal? On our way to the hospital, we picked Nick up from his college class (I love that) and Dana asked me if I had seen the view? I had not, but to see it, we had to walk a huge flight of stairs (normally, I would have taken them two at a time and raced her) but instead, I said "let's go - if I can't make it we will rest or turn around (the new normal).  We did it, I made it and the view was amazing. I enjoyed that moment, felt the sun on my face, and had a good laugh with my sister. Sometimes, going slow is not so bad,

Today, my mom is supposed to get discharged from the hospital. She is not capable of living alone at this point. She needs 24/7 supervision and is a "fall risk" - she will go stay at Dana's for a week or two and then we will re-evaluate. Our goal and hers is to get her back to independent living. Send the prayers please....February is another long month.

The Part of the Story we haven't shared....

What I left out of this story, is that through this all...the waiting and procedures and nausea....I flew to NYC on January 17th to take a quick last trip to my happy place before I couldn't travel for a while (and it was already scheduled). I left on a Thursday and as usual, my mom was staying at my house with the pups. I texted her in the morning and knew she had made it to my house. I landed at 2pm EST and let her know, then texted later, and again later. As the night went, I started to get worried but figured I was just worrying for no reason. By the morning, I was worried enough to ask the neighbors to go over and knock, thinking they would wake the dogs and thus my mom. Unfortunately, that was not the case. My mom had had a significant stroke on Thursday, which started (our best guess) around 11am - and she got to the hospital the following morning around 7am. It breaks my heart to know she laid there for so long. We had miraculous doctors and they performed nothing short of a miracle. Today marks 18 days in the hospital. But for someone who was supposed to be dead, then paralyzed and perhaps never talking again - she proved them all wrong! She is walking, talking and very much alive. She is weak on her right side (luckily a left-hander), has expressive aphasia and apraxia but is making steady progress every day.  My sister and I are amazed and we all cannot believe this all happened within a 2 week period. We are very strong women and will get through this because what else do you do - but I am not going to say, it has not been a rough month. My sister is truly my superpower and with the two of us - has a lot on her plate. My mom will live with her for a while when she is discharged this Wednesday with hopes that she will be able to live independently again one day soon. It is a crazy, mixed up world - count your blessings every day and live your life! and if you wouldn't mind....add my mom to your prayers.

January was a crazy month.

Many have said, how did you know? You are so healthy, so fit. How could you have cancer? I know...but apparently cancer does not care about any of that.

How did I know? Bottom line, it was a lump in a lymph node in my neck that appeared overnight on December 16th. However, looking back there were a lot of signs that I would write off as something else over the past several months. In fact, Follicular Lymphoma is a slow brewing cancer that may have been brewing for a lot longer than a few months. The most prominent signs prior to the lump were: a bloated belly, feeling full quickly, digestive issues and irregularities, on and off nausea and towards the end of December, serious fatigue.  I have had an enlarged lymph node before (not quite this large) and know that with some infections, that is common. When the lump didn't start to go away and actually seemed to be getting larger, I finally made the appointment. I went to my primary care physician on January 4th at 10am. She did an exam and listened to all of my symptoms. She expressed concern and told me she was ordering a CT scan, a CT scan with contrast, and an ultrasound of the lump. She knows me and said, do not put this off, I want this done by Monday or Tuesday and if you can't get an appointment, call my assistant. I left the office and called to schedule the appointments. I was only able to get something for the following Friday. So I called her assistant and left a message and headed home. I had two conference calls for work and got a phone call at 2pm. It was the assistant, she said, do not eat anything - you have a 2:45pm CT scan. I was like 2:45pm TODAY? She said yes. I proceeded to Hoag. Spent the next 2.5 hours, having the scans and ultrasound done. Left Hoag around 5:20pm. At 6:31pm, I got a phone call from my doctor - she said, I am sorry to call with this news, but it looks like you have a type of lymphoma. She was very caring and compassionate but she also says it like it is (probably why we get along). She went on to tell me, it was probably a Hodgkin's type of lymphoma, treatable but would be a rocky road ahead. She was going to talk to the oncologist on Monday and get back to me.  Have a great weekend (no she didn't say that). Processing that information was rough...and felt surreal. We also didn't have a confirmed diagnosis so we were spinning. The weekend was long.
From there, it went like this.

Waiting, Waiting, Waiting...appointment scheduling.
January 10th - Bloodwork
January 15th - Lymph node Biopsy
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 - left over from Day 1)

So here we go, Cycle ONE of SIX- DONE...5 more to go. May 21st is my last cycle. Pray that it kicks the shit out of cancer and leaves me standing. I know it will! It must. I will not let this shit get me down (well maybe a little) - but I will win in the end.

It all happened so fast...

Sisters’ HB Adventure 1/30/2019 #holyshit #f*^*cancer 

Sisters’ HB Adventure 12/29/2019 #livelife #staywild 

This is the Facebook post from my first day of Chemo - they fast-tracked me, exactly one week from confirmed diagnosis, I was having my first infusion. This was due to late Stage 3, possibly stage 4 diagnosis. Follicular Lymphoma is a blood cancer - so although it is in a late stage, the stages are not comparable to cancer in an organ or one area. However, multiple lymph nodes are enlarged in my neck, chest, abdomen, and groin as well as enlarged spleen and liver. I was so bummed when I found out that the hardness I felt in my abdomen was not my "abs of steel" finally showing up!

January 30, 2019 
"Not exactly the adventure I had planned for 2019, but it is the one that chose me. For those who don’t know, I was diagnosed on January 23rd with Follicular Lymphoma. If you want to know more about it, the Lymphoma Reseach Foundation website has great information. It sucks, chemo sucks, but I have an amazing village and right in the middle is my amazing sister Dana  - she is my true superpower. Plus all my friends near and far and family. Please send positive vibes, prayers, and happiness my way. #fuckcancer #iamstrongerthanit #bebrave #breathe and #believe. Love and hugs are good too!!"