Medical Update: I Have a Good Heart!

Quick update, because as my friend said yesterday, "your body is kind of like one big science experiment right now," and it is both fascinating and totally annoying. Sometimes a little scary too.

As you know,  Monday, we (Dana and I) landed in the ER for intense chest pains that radiated up to my ears, jaw, and head. Dr. Google says those symptoms are generally cardiac related.  I had never felt such pain before and breathed through it (in a fetal position) for 40 minutes before it subsided. Once at the hospital, other than dull pain and nausea (also a sign of heart trouble), I was ok. They ran all the tests and my heart was healthy! They said, we do not know what it was, but we know what it wasn't. So off I went thinking that was a "one and done" incident and we may never know what it was. Remy, my chemo nurse said, let's have the doctor see you before round 4 of chemo. Both the ER  doc and Remy said, if the pain returns, go back to the ER.

The week went on as you read in the previous post and yesterday, I woke up feeling a little better. I dragged myself to work (because that is what I do the minute I have any energy - I know, I know). About 2 hours in, just sitting at my desk, the chest pain returned (seriously??). It returned and felt exactly like it did on Monday. Intense, sharp, from the front of my chest to my back and radiating to my ears, jaw, and head. At first, I just put my head down at my desk thinking it would pass quickly. Nope. So with my colleagues there, I got up and walked over to our office couch (yes, we have a couch in our office - it is our "collaborative space"). I laid down and curled up and asked what time it was. I figured if it was like Monday, I had about 40 minutes of intense pain and it would pass. So from that position, I asked them to check with Dr. Google - (do not judge) - I was not going to the ER again. I breathed in and out - it did not make it worse. I coughed, it did not make it worse. I called my sister (also a doctor) and we decided to wait it out. Of course, I did not call Remy, my chemo nurse. He would tell me to go to the ER again. Sure enough, about 40 minutes in, the pain started to become less intense. My colleagues would not let me drive home - so I did not argue and home we went. Once home, I called the doctor's office and asked to have him call me. He was out of the office but they said, Catherine, the nurse practitioner would call me. Meanwhile, I was back to Dr. Google (I am an excellent googler). Everything I read pointed to cardiac issues, except one article about Neulasta - the white blood cell booster they had given me. This article stated, that pain in the sternum could be a side effect of Neulasta, as this area is an area in the body that builds a lot of white blood cells.  Catherine called. We discussed all my symptoms, what meds I was on, what I had eaten, and any other details relevant to this. She said it all seemed to point to cardiac. I mentioned the idea of it being a Neulasta side effect. She said she had never heard of that being a side effect. Since she was not sure what direction to go, she said she was going to call the doctor and get his input as it could be a referred pain. I waited, of course, freaking out a little, now thinking could it be my heart? She called back. She had spoken with the doctor, they reviewed my charts, my medical history, the report from Hoag ER and concurred that this was, in fact, a side effect of Neulasta (THANK YOU DR. GOOGLE). I had been on prednisone until Sunday, which actually also helps with the bone pain and side effects of Neulasta, and having had my first reaction on Monday made sense. They were going to put me back on a low dose of prednisone (goodbye sleep) along with tramadol for the pain for 5 days. Neulasta lasts in your system for 14 days - so I just have to get through until next Wednesday. If my white blood counts are up on Monday, the Neulasta worked. If I can manage the pain, we will continue each round with Neulasta because it is doing its job. If I can't (of course I can - if it is not my heart - I can handle pain), we would go back to the Zarxio - less pain, less white blood cell boost. So my options are, be confined to the house because my white blood cells are so low, I am at severe risk of infection - or intense bone pain (it comes and goes) and good white blood cell counts. Duh! and again....My heart is healthy!!

Thank You, Next.

Yes...Thank You, Next. Moving on...from this past week...

I cannot lie. The last week has been a rough one. Both emotionally and physically. I know I am not dying and I am strong, brave, courageous with a kick-ass attitude. "I got this" -  I am not "the cancer," and yes I will beat this. But unfortunately, some days just SUCK. 

This post is not meant to be a "wah, wah," "pity party" or a "please feel sorry for me" post but more of my own documentation and a bit of therapy as I go through this #livelifedetour. 

Last Tuesday, I completed Round 3 of chemotherapy and for those that follow me on social media,  know that the infusion itself went better than the first two. I left there on Tuesday (only 6.5 hours) with the positive attitude that this was going to be the best round yet. No side effects, no fatigue, just a little rest and we would do it again in a few weeks.  Halfway through, treatment was working, positive outlook, ALL GOOD. If it were just that easy...

Wednesday, I was off to a good start...I walked the dogs, did some light housekeeping and laundry and even did some work. I thought - "I got this." Thursday morning came and again, I walked the dogs and got ready for a visit from my cousin. By noon, my headache began, my energy dropped and I crawled on the couch.  I spent the next two days in a fog of headaches, nausea, and exhaustion. Ok, I thought, two days down and we will be over this. Saturday came, I felt a little better (the fatigue is just always there so you learn to deal with it), so I picked up my mom and headed to the grocery store, CVS, and filled the Jeep with gas. Dropped my mom off, and was exhausted and annoyed that running a few errands wiped me out. I think that is what is most frustrating about all of this. My body. My darn body is not cooperating with me. It is calling the shots and I hate listening to it. So when I refuse to listen, it just lays me down hard so I have no choice. WTF. I am in control, not my body! Sunday was another day home resting but actually got some grading done. 

Fast Forward to Monday, thinking, new day, new week, new ME! Monday, Bloody, Monday - go get my weekly bloodwork done and go to the office. I took the dogs on a slow walk and barely made it home. Around 8am, the intense chest pains and nausea started. I was doubled over trying to breathe through the pain, but it was stabbing and sharp from the front of my chest to my back. Then it traveled up around my head, my ears, and my jaw. WTF - was this really just bad heartburn? But I hadn't eaten much in the last 24 hours. I called my chemo nurse and he said - go to the ER, not Urgent Care, the ER. Ugh, who has time for that? I called my sister and started debating whether we really had to go - maybe it would subside, what an inconvenience, I did not want to bother her. She pretty much said we are going. I will be there in 5 minutes. So I dressed, and we went. I must say, when you have chest pains, they do not mess around. There was no waiting in the ER. Right to the EKG machine, blood draw, temperature, blood pressure and into a room. There I got to put on a pretty gown and a mask (due to my low immune system) and spent the next few hours trying not to vomit. After 4.5 hours, a battery of tests, chest x-rays, and some IV fluids, they determined what it wasn't (my heart was fine), and discharged me with 

"if it happens again, come back." Really exhausted now, I went home, and crawled back on the couch for another 48 hours...

Where did the week go? Is it really Thursday?

Here is what I know. There is no rhyme or reason to how you will feel after each cycle of chemotherapy. You cannot compare last round to this round. Each round and each day brings something new and different. Each cycle also brings more fatigue, more side effects, and yucky taste buds making eating near impossible. I also know that as bad as it gets, it will get better, I just have to ride it out. My problem is I hate the ride, I hate the weakness, I hate not being able to do things. But I also know that when I can sit upright, respond to texts, and send a Snap or two - I am starting to feel better and better days are coming. I know that no matter what, each day, the sun will shine, some days it just takes a little longer to see. and I know that there is a small village (really an army) of loved ones out there just waiting to help and take care of me and I so appreciate that.

Here is what I am learning. I am learning that I have no control right now (seriously annoying). I am learning that I have to stop feeling guilty about laying on the couch when my legs won't hold me up. I am learning that it is ok to lay on the couch and not do work. I am even learning how to binge watch Netflix shows (any suggestions?). I am learning that, right now, I have to take care of myself and stop worrying about everyone else. I am learning to listen to my darn body and rest when it says to rest. Ugh.

Thank you to everyone who has continued to check in on me daily or weekly. Thank you to all who have sent good thoughts on FB, IG, Snaps, cards (snail mail is alive and well). Thank you to all who have dropped off food, walked my dogs or threw balls to Charlie Bear. Thank you, because, it helps - A LOT, it gives me hope and encouragement, and keeps me from shutting off the world when I am feeling so crappy. 

So today is my best day this week. I am sitting up, I ate a power pancake, and I am typing this blog post. Tomorrow will be even better...

Thanks to my cousin for posting this on my FB wall...I need to remember this.

Riding a Rollercoaster

I have always loved rollercoasters. Every time I would ride one, I would say, if I could just have a rollercoaster in my backyard, and start each day with a ride, all my days would be great. I loved the excitement and exhilaration I felt with each ride. Now I am riding a different kind of a rollercoaster,  the rollercoaster of life (with cancer).  I think I want to get off this ride, but I can't, I have to ride it out.

Here is my current rollercoaster ride called Life.

Monday: 
Weekly Bloodwork - Monday, Bloody, Monday

Tuesday Morning:
Follow up visit with Dr. DeVos, UCLA, specialist. This was a good visit. Only took two hours to drive 41 miles (thanks LA traffic and Martha Felix, for being my friend, notetaker, and driver at 6am). I got to see my first PET scan, which lit up like a Christmas tree, showing all the cancerous nodes in my neck, abdomen, and spleen. I have to admit, I am glad I didn't see this any sooner or it would have freaked me out. Dr. DeVos seemed certain that the 2nd scan would show great improvement from 2 cycles of chemotherapy. The very "hot areas" in the scan should be cooler and my very enlarged spleen should be smaller. He had reviewed all the images and biopsies himself and determined that I did have the more aggressive type of cancer. He followed that with "you are on the right path;" and that R-CHOP chemotherapy treatment was an aggressive treatment that should work. I left his office with more information and a certain comfort just knowing that the treatment I was doing was the right one and it should be working. At the same time, it was a little scary to see all the "hot spots" on the scan and realize how much cancer I had in my body - but again - just more information.

Tuesday Afternoon:
On Tuesday afternoons, I call Remy, my chemo nurse, to review my bloodwork from Monday. I am on the phone with him, and he says, "Ok, I am pulling up your labs...your WBC (white blood count) is a little low. 2.6 (normal range is 3.8 -10.8) - this is normal for your WBC to drop. Then I hear, "oh shit," and he says, "your neutrophils (think of these as your baby WBCs) are really low, at 424 (normal range is 1500-7800). They call this Neutropenia when your neutrophils drop below 500, you are at greater risk of infection. ANC (absolute neutrophil count) less than 500 = Severe degree of Neutropenia (indicating a high risk of developing an infection). This was not the news I wanted to hear for several reasons. The biggest reason being that if these counts are low, you have to push the chemo treatment, until they return to normal levels. I am supposed to get chemotherapy every three weeks - and have 70 days until my last treatment. I really want to stay on that schedule. I know I cannot control this, but you know I want to. What does this all mean for day to day living? How can I increase my WBC and ANC (and yes, of course, like education, the medical field has acronym overuse)? Well, I could try to eat more red meat and drink bone broth, but other than rest and staying away from sick people and germs, there is nothing I can really do. My body has to do it. Remember the three injections I got the week before, Zarxio, the bone pain shots? Well, they were supposed to help with this but I found out that Zarxio really only lasts in your body for 24 hours, thus the 3 days of injections. Neulasta, the other type of natural protein known as a granulocyte-colony stimulating factor (or "G-CSF"), lasts in your body for 14 days, but has to be administered 24 hours after chemotherapy and no sooner than 14 days before your next infusion. So, tomorrow I will get blood drawn again to see my levels, and can get another injection of Zarxio on Saturday to help increase my counts. If they do not improve by Monday, no chemo on Tuesday. 

Wednesday: The ride continues...
2nd PET Scan - these scans are really quite fascinating. No eating for 6 hours prior to the scan. You show up to radiology, and first, they insert an IV into your arm and check your blood sugar levels, luckily mine was at a 91, which is a good level, if they are too low, you cannot receive the radiotracer (radioactive sugar) that they inject into your bloodstream. Once they inject this, you are put into a room, labeled radioactive, and covered with warmed blankets, lots of them, lights dimmed, and told to relax and try to sleep (this helps move the tracer through your blood more quickly). You lay there for an hour, and "marinate," as they call it. I plug in my earbuds and put on some meditation and rest. After the hour is up, they move you into the scan room, lay you on the little moveable tube-like bed and ask what kind of music you want to hear. The scan takes about 15-20 minutes, you have your arms over your head, covered with more blankets and are asked not to move, but you can breathe (and the Irvine Hoag has the faster machine - sorry Newport Beach - get up to date).  I did not expect to get the results for days. I was wrong and around 6pm I got a phone call from Dr. Danny Nguyen. He says, your scan results are back. I took a breath....and waited. He said, with excitement in his voice, they state "significant reaction to the treatment!!!"  Several of the lymph nodes have reduced in size!! This is great news! It means the chemotherapy is working and we are kicking cancer's ass!! 👊He follows with, but "there is also a small node at the bottom of your lung, which suggests an infection. We are going to start you on an antibiotic and have you rest." We discuss my bloodwork, and how to deal with that (as mentioned above) and I thank him for the phone call. I share the great news with many of you, and sleep a little better!

Thursday:
Today, the sun is shining. I am staying home and resting (ugh) and breathing a little easier, knowing we are winning this fight right now. This rollercoaster ride has its highs and lows...I am screaming and laughing the whole way. Staying positive!  💚💚💚

The Good, The Bad, and The Ugly

This week was one of my hardest weeks yet. It got me thinking that I want to share ALL of my journey and not just the good parts. I want to share this with you, not for sympathy or compassion but for the understanding of my real journey and to share my true authentic self. The Good, the Bad, and the Ugly...so here goes.

The Good:
When someone asks me "good news or bad news?" I always like to lead with the good news. So let's start there. There is so much good in my life. So much love, kindness, and compassion. As I have said before, the outpouring of support from everyone, even those across the country, has been amazing. My sister, of course, my superpower, is by my side at every turn. My family (cousins and aunts) have been checking in daily, ready and waiting for anything I need. My friends have been there when my sister couldn't be (because she is also taking care of my mom), and sometimes do things for me because I won't ask them to do it myself. My colleagues have been incredibly supportive too. I have amazing neighbors, who have made it known that they are (physically) the closest to me and although they know I have a great support team, they are right across the street. My girlfriends (high school and college) in NY are on standby to fly out and take care of me (love you, girls) and then there are people that I don't know as well, who still offer to drive me places, bring me dinner, or walk my dogs. I could go on, but you get the point - I have an incredible team around me. 

More Good:
I always like to look for the silver linings...here are a few that I have noticed.

• Perspective - something like "cancer" really puts life into perspective. All the little things you stressed about, are little now and really don't matter anymore. That is so freeing.
• Connections - I have connected and reconnected with so many people in ways I may never have. I am so much more vulnerable and compassionate than ever before.
• Authenticity - I am trying to be my true authentic self (even down to my Bitmoji). Going through this makes you want to be yourself. No time for anything else. No reason for anything else.

The Bad:
Monday was 8 weeks since I first heard the "news."  The past 2 months have been filled with denial, disbelief, anger, frustration, anxiety, fear, love, laughter, hope, strength, courage and bravery. Yes, an emotional rollercoaster. Overall, I really AM strong, positive, and hopeful.  However, those other emotions are there too. People ask me all the time, "how are you so positive about this?" and my response is "how can I not be?" and I truly meant that. What good will it do me to curl up in a ball and cry? As I say, the "only way out is through..." so to get out, I must keep moving through. You cannot do that if you give up. That being said, it is not all rainbows and butterflies (or puppy dogs). I choose to not share my emotional rollercoaster on social media (but I am sharing it here). That said, there are days that curling up in a ball and crying is exactly what I do - for about 5 minutes...luckily Charlie, Samson, and Gracie, always gather around me and lay on me and start licking me, who can keep crying with "200 pounds of lab" lovin' on you - so I get up and carry on. Some days, I am afraid of the unknown, worried about being vulnerable, frustrated by my physical weakness, and worried about letting people down, but those days pass too. The bad is bad, but it passes and the sun rises and a new day begins. Thank god for new days. Better days. Sunny days.

The Ugly:
Ok..well although I have been known to overshare - I will not do that here (well, not really). I will say that you should know how "out of control" my body is and the side effects of strong chemotherapy are like a moving target changing daily and weekly...if you are really curious as to what that means, here is a great infographic - luckily, I do not have ALL of those side effects at the same time...none of them are fun, but they are my reality. If you know me at all, control is something I like. I like to control my world, my life, my food, my workouts, sometimes even my friends and family (haha - if you are laughing, you know me well.) So, having NO control is one of the most frustrating parts of this whole cancer thing. Having to rest (ugh) is such a struggle, and I fight it. The irony here is that if I would give in to it and crawl into bed or lay on the couch more, I would probably get through it much quicker. But for now, my body basically has to take all the power away from me to the point where I can barely stand for 5 minutes, and then I lay down. 

Today is a good day. The sun is shining. I am not on the couch.

#f#@kcancer, #myssisterismysuperpower, #bebrave #mylivelifedetour #thegoodthebadtheugly 

Thank You for Helping Alice Return to Wonderland - Support for my mom

My incredible friends started this GoFundMe for my mom. I am beyond grateful for all of you who have so generously contributed to support my mom. I will not lie, it has been a struggle to deal with my own battle with cancer as well as the added stress of taking care of my mom.  At times, it is so overwhelming, I have to step outside, feel the sun on my face and remind myself that at this very moment, I am ok. Another moment passes, and I am still ok. I do not have to know what tomorrow will bring, I just have to get through today.

As we say, the only way out of this is through....so we trudge through the thick of it each day. Luckily, we are lifted up and carried by all of you - all of your support, your love, and your prayers.

We appreciate all of you and could not make it THROUGH without YOU... 💚💚💚💚💚💚💚

Here is the link to the GoFundMe. Thank you.

Expanding My Team - UCLA Health

As they say, it takes a "village," and while I have a healthy tribe of supporters sending love, positive vibes and prayers on a daily basis, I also recently expanded my team of doctors.

Last Wednesday, the day after chemo, Dana and I drove (more like crawled) to Los Angeles to meet with a specialist from UCLA.  This was at the request of my current oncologist,  who wanted me to get a second opinion. The specialist, Dr. Sven DeVos,  specializes in lymphoma and bone marrow transplants. I really respect my oncologist for wanting me to see someone who has more experience than him. He said, "we need this guy in our back pocket, in case the chemotherapy doesn't work." He went on to say that UCLA has access to treatments that Hoag doesn't like Car-T-Cell Therapy (even though I have a B-Cell Lymphoma this is a similar therapy that may work).

Our appointment with Dr. DeVos went well. He shared his thoughts on the current reports from all my scans and biopsies. and then went on to say that that was not good enough. He appreciated reading the other radiologists' and pathologists' reports but wanted to see the actual scans and biopsies for himself. He wanted his "world-renowned" (or whatever word he used to insinuate that his pathologists were better) to view the images and biopsies and write their own reports, he wanted to see everything for himself. This is a good thing. He explained that while I do have Stage 4 Follicular Lymphoma - there are also various types, low-grade and more aggressive. He thinks I am on the brink of a low-grade and aggressive type of lymphoma (between 3A and 3B) - but wants to know for sure. I want to know as well. One of the first things he suggested was that we repeat the  PET-Scan prior to  Cycle 3 of chemotherapy. If it is the low-grade type, the PET-Scan will show that a lot of the cancer cells have already been killed by the first two cycles of chemotherapy (yay!). Then cycles 3-6 would just go deeper and kill the rest. If the PET- Scan board lights up, then we know we are dealing with a more aggressive type and can change course, if needed.

As for the idea of a bone marrow transplant, that is the last resort - something we would only do in certain circumstances. There are other treatments that we would turn to if chemotherapy doesn't work or if cancer returns in less than 2 years. It is not returning, trust me. It is not welcome back in my body.

I am having the PET-Scan next week, started the Immunity booster hormone shots (not currently working as I am so sick), and will return to see Dr. DeVos next Tuesday, March 12th. Will update you afterward.  Stay tuned.....#Teammishne! #livelifedetour #bebrave #f@ckcancer