So it’s not leukemia, so it has to be lymphoma? Thousands of thoughts, questions, concerns, worries, come to mind. ALL, CLL, AML, CML – what kind of lymphoma do I have? Will someone please give me an answer?
Thursday, 3/2 we had a consultation at the hospital to have the lymph nodes biopsied. Mind you, in all of this chaos, we are supposed to leave for a cruise on Sat 3/4 for 8-days. Of course, after the consultation, they first availability for the procedure is on Monday, 3/6. No words were exchanged with my husband, other than “schedule it” – meaning the cruise was cancelled. We hadn’t had a vacation for us to look forward to in over a year and it went in the blink of an eye. During the consultation, the doctor said he may have to go through my lung to get a sample of the lymph nodes, but will perform a CT scan while doing the biopsy to see if there is a better spot. The lung, really? Ouch!
A long weekend of waiting for the biopsy, and Monday morning comes. A pregnancy test via blood bruises my arm (why did we not do a pee test?). My arms already look like those of a drug addict with all the times I’ve been poked and prodded for bloodwork – we’re on 2 months of searching for answers and almost every appointment or test includes bloodwork.
While semi-under during the procedure (I was not out but was made “comfortable”), the doctor thankfully sees an opportunity to go through my liver. Right as they decide to go that route, I asked the doctor if I could ask a question (I could see the imagery to my left while on the CT table, and he was to my right). He said no, and I believe had my meds kicked up a notch, as the next thing I remember, I was in recovery. I was simply going to ask if the images I saw were my lung and my lymph nodes (which appeared to be a good sized cluster), but he didn’t want to talk. Totally understandable, considering.
While recovering, my husband is brought back to prove I’m alive but also let him know I needed to stay on my side to help close the incision (low platelets makes it hard to clot, so there was concern there for sure) and to make sure I came out of the anesthesia. After being released, I was told results would take 1-week, but was hoping for sooner. I went to work per my semi-regular schedule (husband came with me to help drive – we joked he was my Uber for the couple of days). On our way home Wednesday, I called to see if the results were in. They said they had everything except the flow cytometry analysis, they wouldn’t discuss the results over the phone, and the doctor didn’t have any appointments until Monday 3/13 (which I already had one scheduled for then). I called the entire week to see if any appointments opened up for Thursday 3/9 and did not succeed. Another weekend of worrying, waiting.
With the lymph node biopsy, being told it’s not leukemia, you start to wonder which lymphoma you have. A story of someone diagnosed with breast cancer and they’ll lose their hair, my husband asked me if I wanted to shave my head to save my hair for a wig (I have long blonde natural hair and never want to cut it). While I brushed it off, it was becoming more real. Something big was coming from this appointment on Monday, March 13th. How severe, invasive, etc. remained to be seen, but something big was coming.
Monday, March 13, 2017 finally came around. My husband, mother, and mother-in-law came to my appointment. First stop, blood work (of course), then to the exam room. The nurse had to bring in more chairs to sit everyone, even after being given the largest room. The PA came in, who I had seen before, and advised of the condition of hairy cell leukemia. What? Hairy cell? What a horrible name! It’s a rare leukemia that affects mostly older men, and you, Alys, a 34-year female, also have it. I thought leukemia was ruled out? Apparently, not completely (it’s a rare leukemia, unique like myself I guess). But – the prognosis is good, and you have a “good cancer.” Hold up – there is such thing as a good cancer? Those two words should never, ever, ever, ever, EVER be uttered in the same sentence. This whole entire process of questions, more questions, small answers leading to more questions and further questions cannot be summed up into anything “good.” Cancer is a life changing word, no matter the severity, complexity, treatment or outlook.
The PA leaves (after dropping the bomb, handing out some pamphlets, speaking matter-of-factly) and the doctor comes in. Questions of fertility are brought up (chemo and procreation don’t mix) and my husband and I have decided we do not want kids (we’ve been married almost 10-years, so I think we’ve made up our minds at this point). The treatment is 5-days of Cladribine, outpatient via IV for 3-hours a day. See you in 3-weeks and we’ll get started then… plus a slew of additional testing and appointments to come (bone marrow biopsy, PET scan per my request since I was thinking lymphona, chemo education class, etc). The doctor also advises my sample is being sent for second opinion to John Hopkins.
After having an appointment list a 1/2 a letter-sized page long, my posse and I leave, still unsure of what the diagnosis is but determined to find out more information. In all the google searches, there are pretty much two treatment options: Cladribine and Rituximab.
My bone marrow biopsy is done on 3/17/17. The slight pain they warned about, was significantly more than advertised. A needle to numb the area, and a “saw-like” device to cut your marrow out for sample. No, they can’t numb your bone. The doctor, nurse and I joke, being that it’s Friday afternoon (St. Patty’s Day too), to get in and out quickly. Naturally, things didn’t happen that way. The first marrow biopsy actually got stuck in the extraction device (Jamshidi as noted in the report) and I got to sit there for another one. Your lower butt area is numb, but as they’re sawing for the sample, the rest of your body is moving. I think the doctor was used to older, weaker bones, so had to put some muscle into mine. The second sample was stuck temporarily, but finally gave way. This is the Friday the first week of the diagnosis.
The second week only had an appointment on Friday for a PET scan. There is a lot of crazy thoughts, including if this is the right treatment, should you get a second opinion, etc. etc. etc. This is a lot of time for two very anxious people to think about “what ifs” and the thousands of possibilities that come from them. Friday of the PET scan doesn’t allow me to eat or drink until the appointment (at noon!), and then I am asked to drink a lemonade-like drink to help me “light up” in the machine. A small amount of radionuclide is administered into my veins, and another drink needs to go down. Finally, I go in for the test. If they ask if you’re comfortable keeping your hands above your head for 20-minutes without moving (while laying down), tell them no. It was so uncomfortable. All the old people ahead of me declined (I could overhear). Me, being 34-years old, said “sure.” It is almost impossible to keep your hands above your head, while lying down, for that long. It felt like an eternity, but the test finally ended (as they all do) and I was allowed to eat once again.
Naturally, with super-sensitive skin, a little sun exposure on Saturday (the day following the PET scan) at a spring training game… I develop a rash that sends me to the ER by Sunday evening. It was bad, but thankfully didn’t itch and was more unsightly to others than anything else. Nothing like sweatshirts and high-neck shirts when it’s 82+ degrees in Florida.
Wednesday, 3/29 brings “chemo class.” I bring my husband and dear friend that is in the medical field to help with questions, should we forget to ask anything or if something triggers her medical background. The class consists of everyone 40+ years older than me, and 1 spouse between the 4 other “students.”
Thursday, 3/30, I see my doctor again. This was more of an assurance appointment and not something she told us to schedule – the cost of the copay was worth the discussion that ensued. We went over the PET scan results, the bone marrow biopsy that concluded 80-90% of my marrow had the abnormal B-Cell lymphocytes (typical of HCL) and checked my rash. The results from John Hopkins wasn’t back yet, but she spoke to the doctor, who confirmed the initial findings of HCL. We discussed the treatment again, when to expect results in my bloodwork (2-months or more), what to expect from chemo. We left the appointment with a hug from the doctor, and felt secure in our plan moving forward.