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. 💚💚💚