I had to come up with this while I was in between calls at work tonight. May I present to you something I call The Giant List of Things I Never Thought I'd Have To Ask In My Life:
Sunday, September 28, 2014
Day 12. Questions.
I have my first appointment with an oncologist today. I still have my heart set on SCCA since they have so many lymphoma specialists, but I really want to get the ball rolling on my scans and getting this sucker staged. So in a few hours when I get off work, I'm seeing a local oncologist that was recommended to me by a couple of friends.
Tuesday, September 23, 2014
Day 7. Distractions.
Everything is still at a standstill. This is the most frustrating part so far - the waiting. When I was first diagnosed, I was devastated but I immediately went into fight mode. I just want to hurry up and start treatment, because the sooner I begin, the sooner I'll be in remission. But after a week of nothing, I've started to lose my positivity and have had too much time to think about everything and get even more scared.
I'm still waiting to hear back from the specialist in Washington DC about whether NLPHL is actually the sub-type I have, or if it's some other type of Hodgkin's. And until I have a 100% diagnosis, the Seattle Cancer Care Alliance won't see me. I did get a call from them today though, and they're reviewing the referrals from my primary care physician and my surgeon. The next available appointment isn't for two more weeks, but they're looking at my charts to see if my case is more urgent. As much as the waiting sucks, I'd rather it be two weeks before I see them than find out that my case is urgent. So in the meantime, I'm going to try to get in to see a local oncologist sooner, then go see one at SCCA to get a second opinion.
While I wait, I've been doing a lot more research about NLPHL since that's the sub-type I most likely have. I've found both good news (well, as good as cancer news can be) and bad news. Good news, of all the Hodgkin's types, NLPHL is the easiest to treat. In fact, there's a good chance that if it's a stage I or II, I may not have to have chemo at all. A lot of NLPHL cases are treated with radiation and Rituxan. How great would that be?! I mean, the treatment would still suck, but it would be a lot better than chemo! The bad news about NLPHL is it's not exactly curable. Most patients relapse. More than once. There's a very good chance that I could relapse and have to fight this cancer 3-4 times in my life. If not more. But I'm trying not to let that distract me. I have to focus on getting a knockout in round one, and hope that there are no more fights in my future.
It's still easy for me to forget that I have cancer. I'm going to make the most of that time, I've decided. Because in a couple of months, when the side effects of treatment are kicking in, it will be with me constantly. But for now, I can still pretend that I'm a healthy 27-year-old.
I took my mom to the Seahawks/Broncos game on Sunday, and it was the best day I've had in a long time. It was just what she and I needed after the week we'd had. If you've never been to a Seahawks home game, it's one of the most electrifying experiences ever. The people, the team, the atmosphere - it's incredible. I've been to a lot of games, but this one was the best, by far. The score was way too close for my liking, and I thought I was going to have a heart attack during overtime, but it was amazing. It made me forget about everything else for a while.
I'm still waiting to hear back from the specialist in Washington DC about whether NLPHL is actually the sub-type I have, or if it's some other type of Hodgkin's. And until I have a 100% diagnosis, the Seattle Cancer Care Alliance won't see me. I did get a call from them today though, and they're reviewing the referrals from my primary care physician and my surgeon. The next available appointment isn't for two more weeks, but they're looking at my charts to see if my case is more urgent. As much as the waiting sucks, I'd rather it be two weeks before I see them than find out that my case is urgent. So in the meantime, I'm going to try to get in to see a local oncologist sooner, then go see one at SCCA to get a second opinion.
While I wait, I've been doing a lot more research about NLPHL since that's the sub-type I most likely have. I've found both good news (well, as good as cancer news can be) and bad news. Good news, of all the Hodgkin's types, NLPHL is the easiest to treat. In fact, there's a good chance that if it's a stage I or II, I may not have to have chemo at all. A lot of NLPHL cases are treated with radiation and Rituxan. How great would that be?! I mean, the treatment would still suck, but it would be a lot better than chemo! The bad news about NLPHL is it's not exactly curable. Most patients relapse. More than once. There's a very good chance that I could relapse and have to fight this cancer 3-4 times in my life. If not more. But I'm trying not to let that distract me. I have to focus on getting a knockout in round one, and hope that there are no more fights in my future.
It's still easy for me to forget that I have cancer. I'm going to make the most of that time, I've decided. Because in a couple of months, when the side effects of treatment are kicking in, it will be with me constantly. But for now, I can still pretend that I'm a healthy 27-year-old.
I took my mom to the Seahawks/Broncos game on Sunday, and it was the best day I've had in a long time. It was just what she and I needed after the week we'd had. If you've never been to a Seahawks home game, it's one of the most electrifying experiences ever. The people, the team, the atmosphere - it's incredible. I've been to a lot of games, but this one was the best, by far. The score was way too close for my liking, and I thought I was going to have a heart attack during overtime, but it was amazing. It made me forget about everything else for a while.
It doesn't take much for me to remember, though. My incision from the biopsy still hurts, and every time I lift my arm too high or roll the wrong way when I'm trying to sleep, I remember why it's there. When my calves start itching like crazy, I remember. Certain words or phrases are a shot to the gut. I was at the surgeon's office for a follow-up on Friday, and he said "Well, that's the last I'll be seeing of you, unless your oncologist refers you to me to have your port put in." Port. Oh yeah, the thing that I have to have surgically implanted in my chest. Yup, thanks cancer.
You know what the worst part has been though? The looks on peoples' faces when they see me for the first time since finding out. The sadness and the pity. I hate it. I hate people feeling sorry for me and looking at me like I'm broken.
I'm not broken. I might be scared, but I'm a warrior. I will win this battle.
Friday, September 19, 2014
Day 3. Looking back and looking forward.
Obviously, I haven't gotten anymore creative with my post titles. I'd like to say that I'll come up with something a lot more witty, but let's be honest - 200 days from now the post is probably going to be "DAY 203." :)
Yesterday was really hard. I announced my disease to the world and posted a link to this blog for all to see. I called my boss to let him know what was going on. I tried to schedule an appointment with an oncologist at Seattle Cancer Care Alliance, and failed. Hopefully that happens today. Overall, yesterday was a whole bunch of suck.
It still hasn't really sunk in yet. It's starting to though. When you're 27 and you have to search the internet for information about freezing your eggs because the chemotherapy is probably going to destroy your chances of ever having a child the normal way, it starts to sink in.
A little bit ago I was looking at a couple of posts from an old blog that I used to have on this account. It's amazing how much your life can change in a matter of years. Five years ago, I was days away from my first trip to Nashville. I was seeing my favorite band (that actually doesn't exist anymore) perform on their first headlining tour, and my biggest worry in the world was whether I would be in the front row or not. Never in a million years would I have guessed that in less than five years, I'd be fighting this monster.
While it's no longer a top priority in my life, I still have the travel-for-music bug. And I'm really thankful for that, because the Florida Georgia Line cruise to the Bahamas that's coming up in November is the only thing that's keeping me sane right now. When I start to feel overwhelmed with all of the cancer crap, I have my friends to distract me by talking about cabana rentals in Great Stirrup Cay. It won't make the cancer go away, but it sure is nice to be able to picture myself laying on a lounge chair in paradise in 51 days.
I should probably head to bed. I have to wake up earlier than normal for a follow-up appointment with the surgeon, then I go back to work for the first night since having the biopsy done.
Yesterday was really hard. I announced my disease to the world and posted a link to this blog for all to see. I called my boss to let him know what was going on. I tried to schedule an appointment with an oncologist at Seattle Cancer Care Alliance, and failed. Hopefully that happens today. Overall, yesterday was a whole bunch of suck.
It still hasn't really sunk in yet. It's starting to though. When you're 27 and you have to search the internet for information about freezing your eggs because the chemotherapy is probably going to destroy your chances of ever having a child the normal way, it starts to sink in.
A little bit ago I was looking at a couple of posts from an old blog that I used to have on this account. It's amazing how much your life can change in a matter of years. Five years ago, I was days away from my first trip to Nashville. I was seeing my favorite band (that actually doesn't exist anymore) perform on their first headlining tour, and my biggest worry in the world was whether I would be in the front row or not. Never in a million years would I have guessed that in less than five years, I'd be fighting this monster.
While it's no longer a top priority in my life, I still have the travel-for-music bug. And I'm really thankful for that, because the Florida Georgia Line cruise to the Bahamas that's coming up in November is the only thing that's keeping me sane right now. When I start to feel overwhelmed with all of the cancer crap, I have my friends to distract me by talking about cabana rentals in Great Stirrup Cay. It won't make the cancer go away, but it sure is nice to be able to picture myself laying on a lounge chair in paradise in 51 days.
I should probably head to bed. I have to wake up earlier than normal for a follow-up appointment with the surgeon, then I go back to work for the first night since having the biopsy done.
Wednesday, September 17, 2014
Day 1. The beginning.
It took me a while to come up with a title for this entry. Everything I kept typing out was negative, making references to doomsday and today being the worst day of my life.
But finally I settled on a simple "day one." Because this isn't the end of life as I know it. In fact, this is the beginning of the rest of my life.
Today I found out that I have cancer.
God, that sentence really sucks. I don't know what's worse, typing it out and seeing it laid out in front of me, or having to say those words out loud to my family and friends. No matter how many times I have to say it or read it, it doesn't get any easier.
I'm not surprised, though. Honestly, I've been expecting to hear that word for weeks.
This whole mess started in late July, when I was at work and noticed that my right armpit was kind of sore where my bra was hitting it. When I got home and undressed before bed, I noticed a visible lump between my breast and the crook of my armpit. It wasn't huge, but it was large enough to the point I was surprised that I hadn't seen it sooner.
I googled "armpit lump" and came up with a few possibilities, including lymphoma. I got a sinking feeling in my stomach, but I immediately dismissed it - there was no way it could be cancer. I read a few places that it was most likely enlarged lymph nodes caused by infection, and would probably go away on it's own in a couple of weeks. So I left it alone and waited.
A couple of weeks later, when the lump hadn't gone away (and had actually gotten a bit larger), I called the doctor and made an appointment. The doctor said it was probably an infection, but sent me to a radiologist to have an ultrasound done. The ultrasound showed that all of my right axilla lymph nodes were enlarged, with at least one of them being about 6cm in diameter. The radiologist said that it could be lymphoma, but it could also be an infection, most likely cat scratch disease. So he and the original doctor decided to go the cat scratch route, and put me on antibiotics.
I did a round of antibiotics, and they did nothing. I decided at that point to go see my parents' doctor in my hometown and see what she thought I should do. She took one look and poke at the lump and said it most likely wasn't cat scratch because cat scratch is extremely painful. Aside from the initial discomfort from my bra, the lump wasn't painful at all. She also said that since the only scratch I'd gotten was on my foot, it would have been the lymph nodes in my groin that were affected, not my armpit. She said it was either some weird, painless form of cat scratch, a funky bacterial or fungal infection that didn't respond to antibiotics, orrrrrrr it was lymphoma. It was at that point that I realized it was a good possibility that I could have cancer.
Dr. D immediately ordered blood work and referred me to the surgeon for a biopsy. I'd seen her on the Friday evening of Labor Day weekend, so I couldn't do anything until the following Tuesday. I spent the weekend abusing the crap out of Google. I realized how many symptoms I had that I hadn't associated with lymphoma until all of this was happening - fatigue, red splotchy rashes and itchy skin (I have psoriasis, so I thought it was related to that), lower back pain (I injured my back in high school and have recurring back pain, so I thought it was a flare up). Things that I now realize had been going on for about 2 months before the lump showed up.
The Tuesday after Labor Day, I got a call from Dr. D's office. All my blood work was normal except my lactate dehydrogenate (LD) levels, which were high. A quick check with my new best friend Google showed that high LD levels indicate only a couple of things - anemia (which had been ruled out with my other normal blood work), liver disease, muscle injury... and lymphoma.
I went into "hope for the best but expect the worst" mode at that point. I started worrying about how much sick leave I have available at work, and if I could arrange my schedule to make it easier during chemo. I had a talk with my mom about the worst-case scenario, and how we would handle things if it came down to it. I even started pricing wigs online. The couple weeks before I met with the surgeon were really stressful.
I had an excisional biopsy done last Friday. The surgeon recommended doing this versus a needle biopsy, because sometimes the latter doesn't get enough tissue to biopsy. It was a no-brainer - I agreed to the excisional. The surgeon removed just one lymph node during the surgery - the 6cm node that I've been calling "big fella." I didn't know it until today, but my mom had asked the surgeon afterward about the chances of it being cancer, and he said based on his experience and how it looked, he thought it was malignant.
The first couple days after surgery were a Percocet fog, but I was wide awake by the time Monday rolled around. I wanted the results. But Monday turned into Tuesday, and Tuesday turned into Wednesday, and I still hadn't heard anything. I was going nuts. So I called the pathologist's office and bugged the crap out of the receptionist. I'm glad I did, because it went from "the report is not ready yet" to the pathologist calling me back and giving me the results just before he was supposed to go home.
I’ve been diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma. It’s a very rare sub-type of Hodgkin lymphoma - only about 5% of Hodgkin’s is NLPHL, and only about 500 people in the United States are diagnosed with it each year. But, like other lymphomas, it's very curable with a high survival rate.
But finally I settled on a simple "day one." Because this isn't the end of life as I know it. In fact, this is the beginning of the rest of my life.
Today I found out that I have cancer.
God, that sentence really sucks. I don't know what's worse, typing it out and seeing it laid out in front of me, or having to say those words out loud to my family and friends. No matter how many times I have to say it or read it, it doesn't get any easier.
I'm not surprised, though. Honestly, I've been expecting to hear that word for weeks.
This whole mess started in late July, when I was at work and noticed that my right armpit was kind of sore where my bra was hitting it. When I got home and undressed before bed, I noticed a visible lump between my breast and the crook of my armpit. It wasn't huge, but it was large enough to the point I was surprised that I hadn't seen it sooner.
I googled "armpit lump" and came up with a few possibilities, including lymphoma. I got a sinking feeling in my stomach, but I immediately dismissed it - there was no way it could be cancer. I read a few places that it was most likely enlarged lymph nodes caused by infection, and would probably go away on it's own in a couple of weeks. So I left it alone and waited.
A couple of weeks later, when the lump hadn't gone away (and had actually gotten a bit larger), I called the doctor and made an appointment. The doctor said it was probably an infection, but sent me to a radiologist to have an ultrasound done. The ultrasound showed that all of my right axilla lymph nodes were enlarged, with at least one of them being about 6cm in diameter. The radiologist said that it could be lymphoma, but it could also be an infection, most likely cat scratch disease. So he and the original doctor decided to go the cat scratch route, and put me on antibiotics.
I did a round of antibiotics, and they did nothing. I decided at that point to go see my parents' doctor in my hometown and see what she thought I should do. She took one look and poke at the lump and said it most likely wasn't cat scratch because cat scratch is extremely painful. Aside from the initial discomfort from my bra, the lump wasn't painful at all. She also said that since the only scratch I'd gotten was on my foot, it would have been the lymph nodes in my groin that were affected, not my armpit. She said it was either some weird, painless form of cat scratch, a funky bacterial or fungal infection that didn't respond to antibiotics, orrrrrrr it was lymphoma. It was at that point that I realized it was a good possibility that I could have cancer.
Dr. D immediately ordered blood work and referred me to the surgeon for a biopsy. I'd seen her on the Friday evening of Labor Day weekend, so I couldn't do anything until the following Tuesday. I spent the weekend abusing the crap out of Google. I realized how many symptoms I had that I hadn't associated with lymphoma until all of this was happening - fatigue, red splotchy rashes and itchy skin (I have psoriasis, so I thought it was related to that), lower back pain (I injured my back in high school and have recurring back pain, so I thought it was a flare up). Things that I now realize had been going on for about 2 months before the lump showed up.
The Tuesday after Labor Day, I got a call from Dr. D's office. All my blood work was normal except my lactate dehydrogenate (LD) levels, which were high. A quick check with my new best friend Google showed that high LD levels indicate only a couple of things - anemia (which had been ruled out with my other normal blood work), liver disease, muscle injury... and lymphoma.
I went into "hope for the best but expect the worst" mode at that point. I started worrying about how much sick leave I have available at work, and if I could arrange my schedule to make it easier during chemo. I had a talk with my mom about the worst-case scenario, and how we would handle things if it came down to it. I even started pricing wigs online. The couple weeks before I met with the surgeon were really stressful.
I had an excisional biopsy done last Friday. The surgeon recommended doing this versus a needle biopsy, because sometimes the latter doesn't get enough tissue to biopsy. It was a no-brainer - I agreed to the excisional. The surgeon removed just one lymph node during the surgery - the 6cm node that I've been calling "big fella." I didn't know it until today, but my mom had asked the surgeon afterward about the chances of it being cancer, and he said based on his experience and how it looked, he thought it was malignant.
The first couple days after surgery were a Percocet fog, but I was wide awake by the time Monday rolled around. I wanted the results. But Monday turned into Tuesday, and Tuesday turned into Wednesday, and I still hadn't heard anything. I was going nuts. So I called the pathologist's office and bugged the crap out of the receptionist. I'm glad I did, because it went from "the report is not ready yet" to the pathologist calling me back and giving me the results just before he was supposed to go home.
I’ve been diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma. It’s a very rare sub-type of Hodgkin lymphoma - only about 5% of Hodgkin’s is NLPHL, and only about 500 people in the United States are diagnosed with it each year. But, like other lymphomas, it's very curable with a high survival rate.
That’s pretty much all I know at this point. Because NLPHL is so wonky, the pathologist is sending my lymph node tissue off to a specialist in Washington DC to confirm that this is the type of lymphoma I have. I have to go meet with an oncologist next week, and soon after that I’ll have to go through a bunch of tests and a bone marrow biopsy. That will determine what stage my cancer is, and if it’s spread to my liver, spleen, or bone marrow. Once they know what stage it is, they’ll decide what treatment will be best - chemotherapy, radiation, or both.
I'm scared shitless, and I'm overwhelmed from trying to process everything. But I'm also trying to stay positive. I will beat this thing. I'm so lucky that I have family and friends supporting me, and a job that has great medical benefits. I've been dealt a crappy hand, but it could be a lot worse!
I'm ready to start fighting!
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