It’s hard to believe that it’s been four months since Danny was officially diagnosed with AML. We have settled into a regular cadence of doctor appointments, lab tests, treatments, blood transfusions, and all that comes with a leukemia diagnosis.
Danny has been doing really well. He had his first round of consolidation chemo the week of February 6. It was a short hospital stay at just four days followed by a few more days of outpatient chemo. He begins his second round of consolidation chemo tomorrow, Monday, March 6, and we are thrilled that all of it will be outpatient!
The transplant coordinator is working with the donor team to hopefully make Danny’s bone marrow transplant happen by mid April. A lot of stars must align in terms of donor availability, insurance authorization, hospital availability, and more. Danny has successfully completed all of his pre-transplant tests. So, the proverbial ball is rolling!
I thought you would all like to hear, straight from Danny, what this experience is like for him. So, I put on my Oprah hat and interviewed him! Here’s the exclusive interview with the man, the myth, the legend…Danny Handler:
Q: What is it like having AML (Acute Myeloid Leukemia)?
Having cancer is definitely no walk in the park. It’s always feeling like shit, multiple doctor visits every week, chemo, transfusions, constantly getting poked and prodded, lots of meds, lots of tests, little sleep, anxiety, depression, and fear. It’s weight loss, muscle atrophy, and not recognizing your reflection in the mirror.
It makes you feel old. Not only physically, but mentally too. The vast majority of the patients you see at the oncologist’s office and the hospital are much older, usually in their 70’s or 80’s.
Then there’s the pain. Pain like I’ve never felt before. Leukemia can cause severe bone pain, and for me it was extreme and affected my head, legs, and back. I can’t even describe what it feels like. It’s intolerable. It’s not like a normal headache. It’s writhing on the floor, unable to think or speak pain. And it was 24/7. It made my head hot to the touch. Even laying down on a pillow made the pain worse and caused profuse sweating. So, sleep was out of the question. And the leg pain was so bad I couldn’t walk at times. I could go on and on about how bad it was, but my saving grace was ibuprofen. Only high doses of ibuprofen made the pain go away when narcotics wouldn’t do a thing. I was lucky in one respect that the ibuprofen helped, but taking it for long periods of time, at high doses, can cause internal bleeding and damage your liver and kidneys. The recommended dose is 800mg a day for up to 10 days. I was taking 2400mg a day for over 6 months! But when I finally started treatment, the chemo took my pain away.
So, to sum it all up, having AML sucks balls!
Q: Chemotherapy is different for everyone. What is chemo like for you?
In some aspects, I feel I got a little lucky. So far, I haven’t had severe nausea or vomiting like a lot of people do. All the other side effects still suck though. I get terrible mouth and tongue sores, along with inflamed, painful gums. Not only does it hurt, but it makes it very hard to eat anything. At times, it’s even hard to talk. My taste buds are also impacted. Everything tastes bad, even plain water tastes like garbage (like I know what garbage tastes like!). I’ve also lost a lot of hair on my face, my head (what was left of it), and parts of my body. And there’s also the brain fog, or “chemo brain” as they call it. The long hospital stays are really rough, too. Being there for a month will test anyone’s resolve.
Also, the chemo that I get drops my blood counts very low which has its own set of issues. (More about that with the next question.)
Q: How do you feel when you’re neutropenic (having too few neutrophils, a type of white blood cell)? And what precautions do you take when you have neutropenia?
The chemo drops all my blood counts to almost nothing. This causes weakness, fatigue, dizziness/light-headedness, erratic blood pressure, body aches & pains, and just a general shitty feeling. I also get out of breath very easily, and usually there is a period of unavoidable infection along with a fever. When my hemoglobin or platelet counts get too low, I have to get blood and/or platelet transfusions to bring the levels back up. I’ve had lots of those.
Since my immune system is almost non-existent, the precautions during neutropenia are pretty extreme. I rarely go to public places other than doctor’s offices and when I do, I wear a mask. When I’m neutropenic, I also have to avoid fresh fruits, vegetables, and even fresh flowers as they can contain dangerous bacteria that my body can’t fight off. I have to avoid sick people like the plague.
Q: What’s been the worst part of your treatment so far?
Two things. First, the long hospital stays. Second, bone marrow biopsies. If you ever get a bone marrow biopsy with just a local anesthetic, prepare yourself for one of the most painful experiences of your life. I’ve had six of them so far. Thankfully, the hospital I go to now puts me under for them and I don’t feel a thing!
Q: How do you feel about the upcoming bone marrow transplant?
I’m really nervous. It will be a month or more in the hospital, which I’m not excited about, but I’m trying to be optimistic and hopeful about the whole thing. If it works, it will save my life. If it doesn’t… well, we won’t go there. It’s gonna work!
I’m also concerned about graft vs host disease (GVHD). That’s where the donor cells attack your body, thinking it’s a foreign object. GVHD can manifest in many ways and be very mild to very severe. Some GVHD is expected, and these days they know how to treat it. However, the unknown is still scary.
Q: What’s been the most surprising thing about having cancer?
I think the most surprising thing is just the outpouring of care and compassion, especially from people you wouldn’t expect. Family, friends, doctors, nurses, and staff all just want to help and make you feel better. It’s truly amazing.
Q: What gives you the strength to keep fighting?
The answer to the previous question applies here too. The love and support from everyone keeps me going. But most of all, I get my strength from my wife, Jennifer. She has been my rock through this process. I couldn’t get through it without her. She’s my angel.
Just as she was by my side through my struggles with ulcerative colitis, she is by my side now. When I’m in the hospital, she is there with me every day. She goes with me to all my appointments and knows more about what’s going on with me than I do! It’s not an easy job, and caregivers go through their own shit. It’s truly unconditional love.
Q: What’s one thing you want people to know?
I just want everyone to know that I am truly grateful for the love and support you have shown me. Thank you! Thank you! Thank you!
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