An interesting thing that I found out is that about 1 year after receiving a transplant, I would have to be revaccinated for everything just like a small child, as antibodies that the donor would have built up to various diseases don't transfer with the transplant. Chickenpox at 30? No thank you! If and when I make it to the magical 5 year leukemia free mark (that's the point at which I have no greater chance of it coming back than the general public does of getting it), I plan to get a sleeve tattoo. In the past, I've always been a sissy for needles, so I feel like I might be a little more prepared by the time the tattoo comes around.
With it being one month and one day since I was diagnosed with AML, I thought I'd share the story of how I began to realize I was sick. AML manifests as a typical "I don't really feel too good," general sickness. I first started to feel bad in mid-December but decided I was just "mom tired." All you moms out there know what I'm talking about- we're super tired, and each day, we somehow find the energy to just keep going. I strangely had a migraine on December 14th that hit me hard. I hadn't had one of those in years, but it was very intense and I think it may have been the day that the AML got it's start, but I'll never know for sure. A week later, Remi came home from school with the flu, which I also ended up getting, but 2 weeks later, I was still really weak and not really recovering. Still thinking I was mom tired, we went to Nebraska for Christmas, and I noticed that breathing was becoming a little more difficult walking up the stairs and I was even more tired than usual, so in my mind, I decided I needed to get into a doctor after the holidays.
It hit me on New Year's Day that something was seriously wrong with me. It had been so cold, but it was finally sunny and around 30 that day. I had really wanted to take Remi sledding or at least pull her around the yard in her sled, so that's what we did. I suited her up, and I was going to pull her around. Our whole yard in Lolo is a little under 6,000 sf, so that gives you an idea of the size of our backyard- big enough, but you can mow it in about 20 minutes and take care of the weed eating in about 10 minutes. I started to pull Remi in her sled and realized that my heart was pounding out of control and I couldn't breathe well. We didn't even make it one lap around the yard. It was at that moment that I knew I was sick with something significant. I told Remi, "Mama is sick, but we're going to find out what is going on, and we'll go sledding another time." It was a very emotional moment for me and one that I'll never forget.
I talked to Toby about my heart rate and fatigue and we both agreed that it was something I had to get checked out. I scheduled an appointment the first business day of the new year and being a new patient, I was told it wouldn't be until 1/18. I took the appointment hoping I could make it that long, but later in the week, my symptoms were getting worse, and I knew I had to get in sooner, and I was able to reschedule for 1/12.
The weekend of the 9th and 10th, I could barely breathe, was exhausted, and couldn't even carry Remi from the middle of our house to her bedroom to change her diaper or even make the bed without needing to take a rest break. I couldn't even stay awake holding a conversation. Over the weekend, I had a dream that I was going to die if I didn't make it to the doctor's office.
Tuesday came around for my appointment and my brain was so foggy, I decided to call the office to see if my appointment was at 10 or 10:30. After some mixups with the scheduling, the receptionist informed me that my appointment wasn't until 1/19, so I called the other clinic location to see if they had any cancellations for the day. Luckily, they had one for 2 pm and it seemed like it took forever to get to the afternoon.
I went into the doctor's office hoping to get some antibiotics and be on my way, although strangely in my mind, I wondered if I had Chronic Lymphocytic Leukemia (CLL) after researching my symptoms and cancers on the Mayo Clinic website. At my doctor's appointment, I found out that I had a hemoglobin of 3 and about a pint of blood in my system which was why my heart was working so hard to pump the blood I did have. I was admitted to the emergency room for a blood transfusion. The following day, I had my first bone marrow biopsy. On 1/14, I received my diagnosis, had a PICC Line installed, and began my first round of 7+3 chemo at 9 pm that night. It was a whirlwind of emotional and physical pain.
I'm generally pretty in tune with my body, and although I knew there was something seriously wrong, I truly feel that God was (and still is) watching out for me and guiding me through this process. If untreated, acute myeloid leukemia will kill a person in approximately 5 weeks. I feel very blessed and lucky that I was able to get to the doctor when I did, as I potentially had 1 week to live. The dream I had could have come true, but it didn't. I apparently also set a record for many doctors with a hemoglobin of 3. The doctors in Missoula and Seattle have said the lowest they've seen is 5. I'm somewhat proud of the fact that I found a way to function (although barely functioning is probably a better term for it), but I'm also scared shitless by how possible it would have been for me to go to sleep and never wake up. I also feel empowered by the beginning of my journey because it taught me that my body is capable of way more than I ever thought it could withstand, and this helps gives me hope for survival.
After my first day of chemo, I still feel strong and healthy. Here's to day 2, which starts tomorrow morning at 7:30 am. No time for a coffee and pastry with that early start!
I talked to Toby about my heart rate and fatigue and we both agreed that it was something I had to get checked out. I scheduled an appointment the first business day of the new year and being a new patient, I was told it wouldn't be until 1/18. I took the appointment hoping I could make it that long, but later in the week, my symptoms were getting worse, and I knew I had to get in sooner, and I was able to reschedule for 1/12.
The weekend of the 9th and 10th, I could barely breathe, was exhausted, and couldn't even carry Remi from the middle of our house to her bedroom to change her diaper or even make the bed without needing to take a rest break. I couldn't even stay awake holding a conversation. Over the weekend, I had a dream that I was going to die if I didn't make it to the doctor's office.
Tuesday came around for my appointment and my brain was so foggy, I decided to call the office to see if my appointment was at 10 or 10:30. After some mixups with the scheduling, the receptionist informed me that my appointment wasn't until 1/19, so I called the other clinic location to see if they had any cancellations for the day. Luckily, they had one for 2 pm and it seemed like it took forever to get to the afternoon.
I went into the doctor's office hoping to get some antibiotics and be on my way, although strangely in my mind, I wondered if I had Chronic Lymphocytic Leukemia (CLL) after researching my symptoms and cancers on the Mayo Clinic website. At my doctor's appointment, I found out that I had a hemoglobin of 3 and about a pint of blood in my system which was why my heart was working so hard to pump the blood I did have. I was admitted to the emergency room for a blood transfusion. The following day, I had my first bone marrow biopsy. On 1/14, I received my diagnosis, had a PICC Line installed, and began my first round of 7+3 chemo at 9 pm that night. It was a whirlwind of emotional and physical pain.
I'm generally pretty in tune with my body, and although I knew there was something seriously wrong, I truly feel that God was (and still is) watching out for me and guiding me through this process. If untreated, acute myeloid leukemia will kill a person in approximately 5 weeks. I feel very blessed and lucky that I was able to get to the doctor when I did, as I potentially had 1 week to live. The dream I had could have come true, but it didn't. I apparently also set a record for many doctors with a hemoglobin of 3. The doctors in Missoula and Seattle have said the lowest they've seen is 5. I'm somewhat proud of the fact that I found a way to function (although barely functioning is probably a better term for it), but I'm also scared shitless by how possible it would have been for me to go to sleep and never wake up. I also feel empowered by the beginning of my journey because it taught me that my body is capable of way more than I ever thought it could withstand, and this helps gives me hope for survival.
After my first day of chemo, I still feel strong and healthy. Here's to day 2, which starts tomorrow morning at 7:30 am. No time for a coffee and pastry with that early start!
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