Sahar's Still Doing Treatment!

My story starts in 2008, when I was originally diagnosed with Hodgkin's lymphoma. I underwent chemo (no radiation). Then in 2014, I was diagnosed with tongue cancer as well as a relapse of the Hodgkin's lymphoma (likely unrelated - just totally random, bad luck!). I underwent 15+ hours of surgery, where they removed almost half of my tongue and then reconstructed it with muscle from my chest and skin/fat from my left wrist. Yes, where my Deathly Hallows tattoo used to be! So now I've got the Deathly Hallows tattoo in my mouth hahaha.

After surgery, I went through radiation to my mouth (which was worse than the surgery, to be honest) as well as a very low-dose chemo to make sure any pesky mouth cancer cells were eradicated. The radiation affected my ability to eat and swallow and that chemo made my entire face break out in spots!

Once I recovered from all of the tongue cancer stuff enough, we were going to start treatment for the Hodgkin's lymphoma relapse. BAt that time, in early 2015, the only treatment available for a relapse of this disease was a medium-dose chemo followed by an extremely high-dose chemo and a bone marrow transplant. Because of this, I had to freeze my eggs (not covered by insurance, sigh). Luckily, I was able to get so much support from a previous Fundraiser and also some subsidies by the hospital itself to help with the $12,000 cost. After I froze my eggs, we started the medium-dose chemo and, after about 4 treatments, it landed me in the ICU for 12 days! What happened is that the radiation to my mouth caused really bad mouth sores during radiation itself but also made me more susceptible to mouth sores during this medium-dose chemo. Long story short, the inside of my mouth literally fell off in chunks and I was in severe pain and had to be put on a feeding tube through my nose because I couldn't eat/swallow. Gross.

Obviously, after this all happened, we had to take a break so that I could recover. It took me a LONG time to recover my swallowing abilities little by little. Sometimes, I still struggle with that, though this can be fixed with occupational therapy and lymphatic massage therapy.

Whew, so now we're at the start of 2016! Sometime in the beginning of 2016, I started a new targeted chemotherapy that specifically sent the chemo ONLY to the Hodgkin's cells. It had just come out, which was really cool/timely since I was no longer a candidate for a bone marrow transplant at that time, what with my whole mouth situation. This chemo had very different side effects - the most difficult for me was the entire body aches. It was like having a Charlie horse ALL OVER MY BODY (but especially my arms and legs). I also experienced neuropathy, the loss of sensation in my fingertips. My already-clumsy self definitely dropped a lot more stuff around that time. Because the body aches got to the point that I couldn't really sleep comfortably, we took about a month or two break. And in that time....

...IMMUNOTHERAPY became FDA-approved to treat Hodgkin's lymphoma in fall 2016. This was really exciting, because it was meant to be a way more manageable treatment. And in a lot of ways, for me, it has been way better than chemo (no nausea, no hair loss, no vomiting, very few mouth sores). HOWEVER, immunotherapy for me has not been a super easy ride, either. I am still going through this treatment, 2.5 years later. I still can't work and am still on disability, because the side effects are pretty debilitating for me.

A couple months after starting immunotherapy, we discovered I was severely hypothyroid (for those in the know, my TSH level was 40... FORTY). This was causing me to experience severe, debilitating anxiety and fatigue, on top of the fatigue that is caused by the immunotherapy itself. And the immunotherapy was causing the thyroid medication to not absorb as well as it normally would. So it took a long time for us to figure out the right dosage. And even now, my thyroid has ups and downs.

The fatigue, however, has gotten steadily worse and worse (to the point that I needed a few months break at the beginning of this year!). The fatigue sounds kind of like a weird side effect to be so debilitating, unless you've experienced it yourself. When it's bad, I am laid up on the couch all day. I can barely get up to warm up or make food for myself. It's that bad. And another weird side effect of immunotherapy is dryness (my skin, eyes, mouth are SO DRY). My skin is also suddenly extremely sensitive and gets itchy or hives will pop up. This is all immunotherapy - it makes me more susceptible to allergies in general. It's gotten REALLY bad ever since allergy season really started. I live on allergy medicine and even then it's awful.

So, we went from a 2-week regimen to a 3-week regimen to a 4-week regimen of immunotherapy, which is where I'm at now. All of my PET scans since February 2017 have been clear, which is GREAT. But I am still going through treatment with an indeterminate end date. Why? Immunotherapy is SUPER new (it just became approved for Hodgkin's in 2016) so they don't have a TON of info on when to stop when treating a relapse. I know people who are now using immunotherapy for Hodgkin's lymphoma as a first-line treatment (as in, the first time they are ever diagnosed, instead of chemo, they just do immunotherapy). And they go through 1 year of treatment. But Hodgkin's only relapses about 10% of the time, and when it relapses, it is STUBBORN. So my doctor is just waiting for more info to come out because he wants to avoid relapse at all costs!

SO - that is my loooong journey the past 10 years. Because of alllll of this, I don't have much savings, so any little bit helps so much! I have insurance through the Affordable Care Act (thanks, Obama, FORREAL) but it's pretty expensive because, through a really dumb loophole, I am eligible for Medicare making me ineligible for subsidies. YET, Medicare for someone my age would be MORE expensive and more complicated. So, that sucks. I also get treatment every 4 weeks (may change to every 8 weeks soon, due to side effects), meaning I have to pay co-pays, blood work/labs costs, and treatment costs. I also need to start going to regular occupational therapy because my surgical scars on my neck from the tongue surgery are causing a lack of neck mobility. And this causes a ton of tension/knots in my upper back/shoulders and, weirdly, that can actually affect my ability to swallow. I'm also super weak after 4.5 years STRAIGHT of treatment, so physical therapy will help with that. Because of the radiation to my mouth, I also have to go to a dental oncologist once every 2-3 months because radiation can really mess up your teeth/gums. And I have to use special toothpaste! Plus, with my skin going NUTS, I have had to switch to organic skincare products that are good for sensitive skin. Just more medical-related expenses!!

Anyways, I so appreciate everyone's support. I know a lot of the time, I'm MIA because of the immunotherapy side effects (mainly FATIGUE and BRAIN FOG). But I think about everyone's kind words and good vibes often and it is so helpful! Thank youuu!