So since I first posted on facebook about my lymphoma diagnosis, many things have happened. This will, consequently, be a long post. I will try to keep it shorter in the future, though.
First of all, as we all know, Obama won! Whoo hoo!! I would like to thank the many people who voted blue solely for my sake. There are actually quite a few. Apparently, one of my sisters convinced ALL her coworkers to change their votes after hearing my story. Amazing. I get a little choked up every time I think about it.
I cut off my hair and donated it to Locks of Love. The Loft Spa in Bozeman gave me an amazing complimentary haircut. I cried, a little. And then the stylist almost cried. I had to stop crying so she wouldn’t cry. People in this town are so very kind. It is stunning. Please go to The Loft if you need a haircut in Bozeman. They are expensive, but they also have hearts of gold.
Also, Pol and I finished up my application for the high-risk pool and got it mailed off to Helena, so after the 1st of December I will officially be insured.
I have had all the poking and prodding and testing and staging completed. Monday I have to undergo surgery to install a port in my chest for my chemo treatments, and Friday I start chemotherapy.
I have barely worked since my initial surgery, which was last Tuesday. I went in for a few hours Wednesday afternoon, but by Wednesday night, I was in the ER because my incision site had swelled up, and the side of my face was about three times the size it should have been. It turned out the doctor had to remove small bits of my salivary gland, as well as some muscle tissue, when performing the biopsy. Unfortunately, saliva then began draining into the wound, which caused the swelling. And my muscles were stitched together and having a hard time compensating for the extra weight on my neck. All in all, this was pretty miserable and I spent the rest of the week conked out on pain pills. Then, after I got the diagnosis last Friday, the testing began, and I have been in and out and all over the hospital instead of at the frame shop. I finally got a few hours in on Tuesday, a few on Wednesday, and nearly full days after that. But all in all, I missed a week of work. It’s going to be an ouch.
But there has been a lot of good news along the way. The short version is: I have a highly curable form of cancer which responds to treatment rather quickly. They rate my odds of survival at 80% or higher, even though I am at stage 3B or 4B. I’ll take that!!! If you want to hear all the details about all the tests and all the hilarious and not-so-funny things I learned, read on.
So, tests. There were a few. The very first one was called a MUGA test, which measured my heart’s ability to expand and contract. Apparently this matters because one of the chemo drugs I will be taking can cause congestive heart failure, so they needed a baseline. My heart is fine. (I could have told them.) This test involved an IV, several injections of different materials, and some lying around underneath a giant camera. I think I fell asleep.
I also had a breathing test, because one of the drugs I will be taking can cause lung complications. I forget what they called it. I spent about an hour doing variations on “take the biggest breath you can….hold it…HOLD IT…now breathe out, HARD.” This was actually quite entertaining, because I just kept getting better at it as I got warmed up. (Apparently once you’re a trained singer, you’re a trained singer.) The tech wanted to keep going, because my lung capacity was way over the expectation for my size and my results just kept going further over their curve…unfortunately, he was required to stop after eight cycles. But I think I made his day.
And then I had the PET scan. This was a nearly full-body scan somewhat similar to a CT scan, but using a radioactive contrast material that makes tumor cells literally glow on the readout. The test itself was pretty easy…they put in an IV, shot me full of radioactive stuff, and then I took a nap for 45 minutes. Then they put me in a machine and I took a nap for another 25 minutes or so. The tech (who turned out to be another woman from Idaho) was a little weird when she came to get me, enough so that I was worried. More on that later.
I also had a bone marrow biopsy. I was terrified of this test, as I have heard horror stories about how much they hurt. I made Pol come along for this one, and I probably bruised his hand. He enjoyed watching the procedure, though, and gave me great descriptions of it later. I won’t post a description here, it’s gory. But the pain was negligible in the end. The lidocaine injection did hurt quite a bit, but after that there was no pain at all, just the most fascinating sensations of pressure and suction inside my hip as they probed around. It’s very strange to suddenly be able to feel an area that has obviously had nerves all along, but has never previously sent you any messages that you were aware of receiving.
There have been doctor’s visits interspersed with the tests. Two or three visits with the ENT specialist who performed the original biopsy, to monitor my neck swelling. It’s slowly improving, and it should eventually subside on its own, no surgical intervention needed. If it doesn’t, they will eventually have to remove the salivary gland. But we are hoping to avoid it.
My oncologist, Dr. May, has also met with me twice. He is new to Bozeman, having moved here from Boston, where he worked at a clinic that specialized in the treatment of lymphomas. I could not be more fortunate to have him as a physician. He is knowledgable, articulate, and not the least bit condescending about explaining things. And he believes in explaining things in DETAIL. I like him immensely.
At our first visit, Dr. May did a physical exam and tentatively classified me as a stage 2B. This meant I had cancer in two different nodal groups (neck and one armpit) and was experiencing systemic effects (such as fever, etc.) However, after he got the PET scan results, he pulled me in again, showed me some pictures, and reclassified me as a 3B or 4B. It seems I have clusters in BOTH armpits, a couple of hot spots in the diaphragm, and maybe a bit in my spine/bone marrow. He hadn’t ordered the marrow biopsy previously (it is not always accurate with Hodgkins and did not seem to be indicated), but after seeing the PET scan results he decided we needed to do it. We are actually waiting on those results, still.
If it IS in my spine and bone marrow, that makes me a stage 4B. That’s not great. But apparently, Hodgkins is still 80% curable when you’re at a stage 4B, because it is a quick-growing cancer, which means it also responds to treatment very quickly, even when it is at an advanced stage. And apparently there’s just been a lot of research into the disease and so they know, very well, what works for curing it. So I feel very, very positive about my prognosis. It seems that if I had to go and get cancer, I picked the right one to get.
We also met with the cancer center social worker. I think we knocked her socks off. She could not believe Pol had stuck by me when we’ve only been dating seven months. (All the bonus points in the world go to Pol for his utter selflessness over the last two weeks, by the way. He has made things a thousand times easier on me, filling prescriptions, cooking, driving me around, carrying my stuff all over the hospital, and just being by my side in case I needed anything. And then there are the foot rubs…) The social worker gave me a lecture about “putting on my big girl panties” and accepting help. I’m trying. It is HARD to do.
The social worker also could not believe that I walked into her office having already completed an application for the Federal MAC plan. She said I was the only patient who had ever come in knowing that they qualified for it. (I don’t understand, WHY is this plan not publicized? If I had known about it earlier, I would already have been on it by the time I needed an expensive biopsy!!!) And then she asked a few personal-ish questions and gave me the good news: she can get most of my bills up to this point written off. She may also be able to get me prescription drug assistance, copay assistance, premium assistance, and as if that weren’t enough: there are several foundations that give small monthly stipends to lymphoma patients. Apparently there is a TON of direct support for patients with this disease. More so than for breast cancer, she said. That blew my mind. Once again: If I had to get cancer, I got the best one! Whoo hoo! So a lot of my financial worries have been eased, at least somewhat.
And then, after everything, there was the chemo orientation. This was, frankly, hilarious. Maybe I am a horrible person. But it was HILARIOUS. My regimen is called ABVD. The PA doing the orientation went through each drug individually. And with each drug, when she reached the side effects, she solemnly intoned, “you will lose your hair.” (As if this were news.) By the third time through, I could not help it…I laughed. And I nearly laughed again when she threatened, “if you lose too much weight, we WILL get a nutritionist involved.” It was so obviously a threat, I pictured some sort of skinny blonde zombie chasing me around in a lab coat, moaning, “eat MEEEAAAAT. eat MEAAAAAT.” I think the cancer center staff already think I’m weird. I probably am.
Other amusing side effects: my skin will darken (this, while I am wandering around in hijab due to the neck swelling!). My tears will be pink. And unprotected sex will poison my partner. Ok, maybe that last is not actually funny…but then again…I am starting to feel like I will become some strange, alien creature for the next six months. A bald, tanned, skinny alien with red tears and poisonous secretions. I don’t know what to do, except laugh.
Things I am supposed to eat: meat, cheese, whole grains, cooked vegetables. Things I cannot have: grapefruit. Sugar. Caffeine. Raw fruits and vegetables. Rare meat. Unpasteurized stuff.
Things I can look forward to: mouth sores. Skin issues. Diarrhea AND constipation. Increasing fatigue as the chemo progresses. Nausea. (They gave me four different prescriptions for anti-nausea drugs.)
But…I don’t have to have surgery, I don’t have to have radiation, and I have a much better than average chance to be OK. It could be a whole lot worse. Even the treatments are only twice a month for about 3 hours at a time. I feel good about my odds of getting through this with most of my sanity intact.
So that’s about all. Pol spent an evening helping me fill out paperwork, and another evening at Costco buying all the OTC drugs I will need in bulk. He is seriously awesome. I meant to take a picture of the huge quantities of drugs we have already amassed, but maybe I will wait until after I get all the prescriptions filled (I have five or six) and then I will line it all up, surround it with all the hospital bracelets I have amassed in two weeks, and post a picture. It will be epic.
Monday at 8:15am I head to the hospital again for my port insertion surgery. The last surgery was rough coming out of the anesthesia, which I did not expect. I’ll be better prepared this time, and I will let you all know how it goes.