A few weeks ago I drove myself to Dana-Farber (which is a fairly horrifying drive if you’re not used to driving in the heart of Boston) to meet with Dr. Arnie Freedman, the head of the lymphoma department and also a fellow alumnus of my alma mater. After a fairly harrowing trip into the worst parking garage I have ever encountered, I emerged on the Carl and Ruth Shapiro floor (if you know me well, you know why this is pretty hilarious) and waited. Well, first I got weighted, which was horrifying, and then went back to waiting.
First of all – if you are reading this and considering going to Dana-Farber for treatment, I strongly encourage it. I had very good reasons for going to Newton-Wellesley but if I was to do it again, I would brave the drive into Dana-Farber. The facilities are gorgeous and the doctors are hands down some of the best in the world.
Back to the story. I met Dr. Freedman who spent the full hour talking to me. He took a full history, looked over my charts, and then went back to consult with the other Hodgkin’s specialists on the floor. None were concerned about my scan. Even though I had advanced stage lymphoma, my risk factors are minimal for disease progression. In fact, my only real risk factor is the stage IV. We all know that statistics mean nothing with cancer, for good or bad, but he was quite reassuring.
He explained that after treatment for Hodgkin’s, there is still quite a bit of scar tissue which is why we can still feel the node in my armpit (which is quite small) and also why it is still glowing on the PET scan. In short, he told me what I already knew. I just needed another oncologist to say it so I didn’t seem like I was ninja’ing my current oncologist. Dr. Freedman also complemented my knowledge of my disease (uh, thanks? Aren’t most patients engaged with their disease? Apparently not..).
My appointments have certainly scaled down, but I still need to go in for yearly exams with my PCP (as well as a cancer follow-up on Monday) and go get my port flushed and some bloodwork done at my cancer center.
Life has been pretty hectic since getting the all-clear. Someone very important in my life was diagnosed with a debilitating, incurable illness and I have been spending a significant amount of time learning everything I can about advanced glaucoma and researching options for funding his necessary surgery. Unfortunately, it seems that the government would be happy to allow him to go blind and pay for disability for the rest of his very long life (he’s in his late 20s) versus paying for a surgery that would save his sight for the foreseeable future. Also unfortunately, the government has not met me yet and I am ready to raise holy hell if need be.
This also has given me focus again on the nonprofit I hope to start. As difficult as it can be to find resources as a young adult with cancer, it’s much more difficult to find resources for a young adult with other disabling or life threatening illnesses. This man received a diagnosis typically reserved for people in their 80s – he needs just as much support, emotionally and financially, as I did when I was first diagnosed and yet there are much fewer options for him. It’s absolutely infuriating.
It will take a few years to get off the ground, but I will be starting a nonprofit focused on helping sick and surviving young adults with an array of diagnoses. This is a veritable black hole in the nonprofit world with few exceptions (like Next Step, which is small and only focuses on a handful of illnesses including cancer and HIV). Who is going to fill that hole if not me?
Allie E. Morse 
I’m glad you finally got up there & I’m glad to hear that he feels it’s scar tissue.
As far as charities; you know my hub had stage 4 oral cancer- I’m disabled (back problems)… 2 years out of treatment; we’re struggling to survive. There are so many charities that focus on those fighting but none for survivors. How do hard working people affected by cancer get their lives back on track without filing bankruptcy in this economy?
Happy Holidays.
~Hugs
I agree – it’s ridiculous that how once you’re done with treatment, so many organizations and treatment centers just say “see ya!”. It’s like getting the rug pulled out from under you a second time, and then you are faced with the financial implications. Luckily survivorship is slowly bubbling to the top, but not fast enough. My first grad school project is actually working with a local organization (that works nationally) to help young adult cancer survivors, called the SAMFund. It only benefits young adults though, and even then, it can only offer grants to a handful of the many who apply. They are still the only organization that I am aware of that does things like help pay for rent, car payments, insurance, etc for survivors who might just need a month to get ahead and on top of their bills.
I think about you and your husband quite often. Sending you my best wishes and hugs and hope you have a fantastic holiday season.
I don’t know what we would have done if I didn’t have a small inheritance; but it’s gone now. He was out for 7 months; so many issues; had to cobra insurance- he was at work 4 or 5 months when he was finally able to start really driving our truck & taking more loads. Then his work lost the main account that was our bread & butter; 1 year after treatment; he was some what run down- he has Lupus; ended up with MRSA too- he then was able to drive a van for the next few months; then they went on strike & he was forced to switch jobs from owner operator to company driver after 28 years- that was March- he then injured his back in April; the company truck he’s driving is beating his body up; was out for 2 weeks; worked maybe 3 days & was laid off for 2 weeks- we had no insurance for 2 months. He’s now trying to switch jobs again; our truck is in the shop; engine was over hauled; it’s getting paint & a new head ramp & we’re having problems getting the loan to get it out of the shop. If we filed bankruptcy; it would help but we don’t want to do that because he’s 54- if his cancer comes back we’d be in some serious doo-doo. If I could find a charity to help us out for a few months; it would help. We had $20k medical last year; this year is probably similar. Everything is catching up to me; I’m having symptoms of an upcoming heart attack- the stress is just too much.
The sad part is; we never asked for anything during treatment & I guess we should have looked but we probably would not have qualified due to the inheritance I had.
There is a huge need for help for survivors; I hope that in the next few years someone does something. It will be too late for us; but if it helps someone else- that would be awesome.
seriously– the carl and ruth shapiro floor—- what is their name NOT on in the Boston area?
i’m so proud of you for deciding to start a non-profit– it’s the perfect thing for you and you’ve really been training for it for years! and since it’s gonna take a few years to get going– you better let me know if you need a lawyer’s eye on anything- you know i’ll be happy to help!
Um, what good are my friends being fabulous lawyers/doctors/professors/rabbis if they’re not on my board? Plus, being on a board looks fantastic on a resume. 😉
Also, I’ll have you know that when I walked onto the floor and saw Carl and Ruth had named both the floor AND the examining room (no joke, it was the Carl and Ruth Examining Bay or something like that), I burst into laughter at the absurdity of the situation. And was also glad I was told to go to floor 8 rather than the Shapiro floor because then it would be like I never left campus from the confusion.
How are you feeling?
I’m slowly starting to feel better, although the winter weather is doing a number on my lungs. It’s getting harder and harder to walk from the parking lot as the temp drops, and I’m about 30 pounds heavier than I have *ever* been which makes everything harder. Still stuck in a brain fog and lack energy as well, but you know, at least chemo is over!
My dad gained a lot too; a lot of it was water retention.
Is someone monitoring your lungs? If not; they need to. Have they also checked your heart function?
When my hub was done with chemo I took him for a few vitamin C drips; he also had a few supplements which I do feel helped. The C drips were not cheap ($100-$150). One supplement I remember was a greens mix. If you can afford to buy some; they could help.
I am so glad you have the all clear. My sister in law has been Hodgkins free for 20 years now. Thank you for starting your non-profit. Many that are going through where you’ve been, will need your strength and encouragement. Blessings to you and your family this holiday season. Kenny