** If you came here for an amazing new recipe or vegan find/recommendation, my apologies. This post is almost entirely personal, although it will more than likely be the first and last of its kind, with updates on my condition as my food blogging continues.
This past March/April I noticed a skin rash developing on my forehead. I didn't think much of it, assuming it would pass. It persisted. It hasn't itched, but is tender to touch. Most people thought it was a slight rash, a sunburn. Some didn't even notice it. I saw my general practitioner in late June, upon return from summer classes, and next a dermatologist in early July. She diagnosed it as dermatitis, an infection that had now spread across my entire head. A topical solution didn't work, neither did the next treatment prescribed.
She wanted to run further tests in a lab, so the dermatologist scheduled a punch biopsy to send them a sample. In mid-August, three stitches in my head later, I waited. Impatiently. For nearly three weeks. She was on vacation, then returned.
She called me during my Tuesday morning Sociology lecture and left me a voicemail, requesting I call her back "because you need to see a specialist and I'd like to elaborate on your condition". I didn't know what to expect. She is the specialist. I took what felt like the longest bus ride to the main campus and called her office while I walked to a bench outside Carrier Library. A receptionist informed me that my dermatologist would take my call during her lunch break. I was relieved. She wanted to give me the results, telling me "it was nothing I had even considered in the first place". Well, it is refreshing to learn you are so good at your job.
The doctor used so many technical phrases and words on that phone call that it was all a blur. I can tell you exactly where I was sitting when she told me, the anxiety I was feeling, all the thoughts that were rushing through my mind, but not much else. She used so much jargon: Lymphoma. Mutant cells. Chemotherapy. Radiation. I asked her to repeat my diagnosis for me.
"You have B-cell, primary cutaneous follicle center lymphoma". Cancer. But it's "highly treatable, and the oncologist will go over all of your options with you for chemotherapy and radiation". I can't even begin to describe the amount of fear that swept over me. It's always said that you spend your entire life thinking that these things won't happen to you, and then they do.
She insisted that I meet with the oncologist, Dr. Pandellapalli, as soon as possible, with an open appointment on Thursday. This was the first week of September. I completed the two hour drive from school Wednesday night, stressed my parents out, and my mom went with me to meet with Dr. P the next day. And then we waited. Dr. P met with us, but before she began to discuss what was going on with my scalp rash, she had other questions about my condition. How long had my lymph nodes in my neck been visibly enlarged? And my spleen? She let me know that my condition was very serious and that she was very concerned. She emphasized that she was worried it could be one of many other diseases. My symptoms presented like a separate, more serious, systemic lymphoma that could be acute (fast-moving). She was not concerned about the rash, it is a grade 2 on the lymphoma scale and would not need chemo.
Tests to classify 1) what I have and 2) what it is doing to my body. Blood tests constantly. A $10,000 PET scan (praise God for insurance, everything has cost us only a few $15 co-pays). A surgical consult, to have a lymph node removed from my groin to be examined. This didn't happen until two weeks later, and it was about as fun as it sounds, as was the long recovery. A MUGA scan, to review my heart activity and be sure it would withstand chemo. A brain MRI, probably the most obnoxious of all. And eventually, a bone marrow biopsy, another painful procedure to review the staging of my lymphoma.
The PET scan revealed cancerous activity in nearly all of my lymph nodes, significant enough that I am presenting (this is the updated, finalized diagnosis) with a systemic follicular grade 3 (-ish) stage 4 non-Hodgkin's lymphoma with cutaneous involvement. My original skin rash is just a manifestation of the lymphoma. What I have is considered an extremely rare case because of the presentation of cancer cells and the diagnosis of this lymphoma for my age (it normally occurs 55+).
Based on this diagnosis, Dr. P prescribed R-CHOP chemotherapy, a combination treatment that is fairly textbook for lymphoma. Because I am not textbook, we wanted to get a second opinion. We scheduled an appointment at NIH (the National Institutes of Health, an enormous compound of government funded agencies for research in medicine and health) to see Dr. Wyndham Wilson, a very reputable oncologist. They recommended Bendamustine with Rituximab (B/R), a different form of chemotherapy that is newer, not quite FDA approved yet, but has been used in Germany for the past 30 years or so with equal or greater effectiveness as R-CHOP but with fewer side-effects (keeping my hair!!). His team took new blood from me and determined I may have an underlying immune condition that caused my lymphoma based on low immunoglobins, low CD-14 counts, low lymphocytes, and others.
We were told this would take about two weeks for the results to come in. We had scheduled a third opinion at Johns Hopkins Hospital in mid-October, another reputable research facility in the area. The timing fit as we were waiting for NIH results and recommendations. I drove up and we stayed at my cousin's house in Baltimore, woke up the next morning to head over to the JHH cancer center. The oncologist there did not have anything significantly new, but wanted to be sure I was aware of all my options, including radiation (and its varieties) as well as "watch-and-wait" approach. He explained that stage 4 is essentially the end-stage of my lymphoma, it would not likely get worse, unless it transformed into a more acute form (25% likelihood of this occurring). What he suggested is that I wait to see if I develop new symptoms, or if my cancer transforms, before submitting myself to treatment which would more than likely "make me sick" from side-effects. Initially I wanted treatment to get rid of my cancer and this was not seen as attractive to me, but I kept it on the table.
The immunology team at NIH took more blood (18 vials!!) and ran a series of tests that took three weeks to get back to us. We learned there was no known deficiency, no explanation for the lower levels of the aforementioned counts. The good news was that the ones they were concerned about would likely be remedied with IV transfusions prior to receiving chemo. I learned during a "chemo class" at KP that my blood would be furiously monitored prior to and following chemo in order to be sure everything involved with treatment was working for me.
The more I thought about it, the more I realized that I'm enjoying my life now. I work temporarily at two jobs and I have only a few weeks of classes and then just one semester left until I receive my highly coveted B.A. I actually learned I will need 3-6 credits over the summer, but will still walk in May at graduation, and have applied to study abroad in France for three weeks in July, to explore Normandy and Paris in the context of D-Day and French culture. How cool is that? My parents are supportive (both studied abroad) and I don't want cancer to get in the way of what I have going on.
I recently joined a chatroom facilitated by the Leukemia and Lymphoma Society to see how other cancer patients have learned to cope. Even 2+ months in to being diagnosed, it is still odd to refer to myself as a cancer patient. Last week I was interviewed by a group in one of my professor's other classes in order to help with their presentation on an organizational chapter of Life with Cancer. It was hard to even see myself as a cancer sufferer, a cancer survivor, what have you. I never considered it a part of my identity, but it is, and I can't quite get rid of it. Lymphoma is not curable, but mine is highly treatable. The LLS chat helped me meet a woman, in her early 50s, who went through B/R for fNHL (follicular non-hodgkin's lymphoma). She has given me so many details about the experience, what to expect, why to favor the approach, and what she has endured. It has been invaluable to subscribe to this community, and now that I have interacted with so many more people from the Young Adults chat, I enjoy the camaraderie more than I imagined.
My most recent appointment with Dr. P was Monday afternoon. I went in with some concerns -- the large lymph node under my chin has definitely grown and others have been more pronounced. I assumed this was normal, which I was assured it could be, yet it could also mean my tumors were growing. She appreciated the growth and let me know that I should consider moving my treatment plan up. I originally planned on doing chemo post-France. She had enough time to review the findings (formalized reports) from NIH and JHH to learn of their recommendations. Based on the progression of my disease and the new visible tumors, she recommended treatment much sooner.
I will begin Rituxan this Friday. It is an antibody, often a component of a chemo regimen. As explained by an oncology counselor in the chatroom, "Chemotherapy drugs kill ALL cells, good and bad. Rituxan is a targeted treatment which does not kill the healthy cells. This is why patients on Rituxan avoid the more toxic effects of seen with chemo treatments." I will not expect extreme fatigue, drowsiness, hair loss, etc. which is great to learn. I will complete four rounds in total over once every 3-4 weeks. After that we will evaluate how everything has worked and see if my body will need chemo, or more Rituxan, etc. I could be in the clear for as long as 18-24 months.
Because most treatment has been utilized for lymphoma, which again is more prominent in 50s+, the treatments I am looking at have not been widely, if at all, used on someone in their 20s. Dr. P informed me that I would be the subject in medical journals! HOW COOL IS THAT?! The best part of cancer is becoming skinny and famous. Well, I'll be lymphoma famous, and I won't actually get skinny unless I do a chemo regimen, but we'll pretend. You can either look at this situation under a lens of humor or sadness, I've always chosen humor and kept my spirits higher than ever. I know I will get through this, my chances are excellent, and I know a great attitude will only make it easier.
I appreciate all kind thoughts, prayers, well wishes, and whatever else you may have to offer. I have so many great people in my life and am very fortunate that I will not have to make it through this journey alone.