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