Tuesday, January 29, 2013
PET Scans- not a Veterinary Procedure
Had my PET/CT scan today. It was a surprisingly relaxing experience since I was equipped with music and an intentional mindset to focus on creating an inhospitable environment for those wimpy little lymphoma cells. I have not been eating refined sugars since my diagnosis (cancer <3 <3 <3 sugar!) and had to cut out all sugar and carbs for 24 hours prior to the scan, so my blood sugar was nice and low- 72 mg/dL. There were no physical sensations associated with the scan, and at this point the radioactive glucose they injected me with has either decayed (half-life of 2 hours) or I've peed it out. I had to sit for about 45 minutes to let the solution get to where it needed to be before they could scan me. The actual scan took about 30 minutes, and was uneventful except for the slight nudge of a car backing into the mobile scanning unit in the parking lot. During those waiting times, I took the opportunity to meditate, breathe, and send hostile messages to the cancer cells and encouraging thoughts and images to my healthy cells. After the scan, we got to take a CD of images home with us but we don't really know what to make of them since PET scans are different than X rays or straight-up CT scans. The hardest part of the day for me was being in the waiting room at the Cancer Center and seeing all the other people who are there being treated. It seemed to me that I was by far the youngest person in there, so it elicited some strong emotions (anger, mostly) that I had to accept and move through. The next step is the appointment I have with the lymphoma specialist on Friday and we will find out what the reports say from both the CT scan I got last Friday and today's PET/CT. I expect to have a staging diagnosis at that point and probably some ideas about what the treatment options are. I also have an appointment at the University of Michigan on Monday to have a running second opinion and ensure thoroughness as a course of treatment is determined.
Sunday, January 27, 2013
The Beginning
I wrote this post back in November, but did not publish it until now. I had hoped I wouldn't need to make it public.
I noticed a bump on the right side of my neck sometime in late August 2012. I didn't have a doctor look at it until I happened to be at the Student Health Center in late August receiving treatment for a feral cat bite. I took antibiotics at that point and was told that if the bump didn't go away with the antibiotics I should get it rechecked. It didn't go away, so I got it rechecked and was referred to a general surgeon for a biopsy. A needle aspiration biopsy on October 8 simple stated that it was negative for carcinoma and that if lymphoma was a concern, a tissue biopsy should be performed. I had that tissue biopsy on Thursday, November 1, and am now "playing the waiting game" until we hear back from the pathologist/surgeon combo. We had been given hope that we might get some info by the end of the day yesterday, but it's now clear I won't know anything for at least another 36 hours. Generally I've been keeping my mind off of it by watching "Breaking Bad" which may be making me feel worse when I'm not watching it. The sun is out, but it's cold and I'm not allowed to cuddle with Javier because the 2 inch incision on my neck hasn't healed and won't for another week at least. I saw an ENT doctor on Tuesday October 30 who immediately shared that "that thing's gotta go" when she walked into the exam room and saw my neck. Up until then, I had some real hope that this was something besides cancer. But she was pretty convinced that it's lymphoma mainly because I've been otherwise healthy leading up to the lump. The lump didn't hurt at all until I got the needle biopsy, it got swollen and tender and then got better. But last Friday I went lap swimming and it felt weird and then my tonsils swelled up on Sunday morning and eventually I was having a hard time swallowing even water. I started taking a new round of antibiotics on Tuesday night and perhaps that's why I can swallow again. My appetite is fine and other body functions are working as they were intended.
I will be shocked if the pathology report comes back positive for cancer. But I won't be surprised. This shit happens all around us and I'm no different that anyone else who has faced this challenge. We are all one, and the illusion of "me" is just that. Sure, I had mononucleosis when I was a senior in High School, and who knows how I got that. I've been a vegetarian for the last two years, and only smoked cigarettes for a short experimental period in college. I know enough about biology that I understand that cell mutations happen, and that we may not really have any control over that. What can I control anyways? I can try to use my remaining time well, and that probably doesn't include watching "Breaking Bad." What else could I be doing while I'm waiting around for test results? Tomorrow I'm going to get together with a bunch of wise women and pray to my ancestors. I'm going to make some art in the form of Lithographic Prints. Today I'm going to be gentle with myself and simply be who I am. I am going to escape for a little while longer. It won't hurt anyone for me to just lie in bed alone for a while longer. I probably won't have much privacy for a while if this turns out to be cancer. And if it's not, then we'll all breathe a sign of relief and get back to the grind.
I've thought about posting on Facebook but I don't want this to be about getting attention or "likes" or any of that. This is to help others who are interested to know what it's like for me and to stay updated. I may overshare, but what's the point of keeping things to myself at this point?
I noticed a bump on the right side of my neck sometime in late August 2012. I didn't have a doctor look at it until I happened to be at the Student Health Center in late August receiving treatment for a feral cat bite. I took antibiotics at that point and was told that if the bump didn't go away with the antibiotics I should get it rechecked. It didn't go away, so I got it rechecked and was referred to a general surgeon for a biopsy. A needle aspiration biopsy on October 8 simple stated that it was negative for carcinoma and that if lymphoma was a concern, a tissue biopsy should be performed. I had that tissue biopsy on Thursday, November 1, and am now "playing the waiting game" until we hear back from the pathologist/surgeon combo. We had been given hope that we might get some info by the end of the day yesterday, but it's now clear I won't know anything for at least another 36 hours. Generally I've been keeping my mind off of it by watching "Breaking Bad" which may be making me feel worse when I'm not watching it. The sun is out, but it's cold and I'm not allowed to cuddle with Javier because the 2 inch incision on my neck hasn't healed and won't for another week at least. I saw an ENT doctor on Tuesday October 30 who immediately shared that "that thing's gotta go" when she walked into the exam room and saw my neck. Up until then, I had some real hope that this was something besides cancer. But she was pretty convinced that it's lymphoma mainly because I've been otherwise healthy leading up to the lump. The lump didn't hurt at all until I got the needle biopsy, it got swollen and tender and then got better. But last Friday I went lap swimming and it felt weird and then my tonsils swelled up on Sunday morning and eventually I was having a hard time swallowing even water. I started taking a new round of antibiotics on Tuesday night and perhaps that's why I can swallow again. My appetite is fine and other body functions are working as they were intended.
I will be shocked if the pathology report comes back positive for cancer. But I won't be surprised. This shit happens all around us and I'm no different that anyone else who has faced this challenge. We are all one, and the illusion of "me" is just that. Sure, I had mononucleosis when I was a senior in High School, and who knows how I got that. I've been a vegetarian for the last two years, and only smoked cigarettes for a short experimental period in college. I know enough about biology that I understand that cell mutations happen, and that we may not really have any control over that. What can I control anyways? I can try to use my remaining time well, and that probably doesn't include watching "Breaking Bad." What else could I be doing while I'm waiting around for test results? Tomorrow I'm going to get together with a bunch of wise women and pray to my ancestors. I'm going to make some art in the form of Lithographic Prints. Today I'm going to be gentle with myself and simply be who I am. I am going to escape for a little while longer. It won't hurt anyone for me to just lie in bed alone for a while longer. I probably won't have much privacy for a while if this turns out to be cancer. And if it's not, then we'll all breathe a sign of relief and get back to the grind.
I've thought about posting on Facebook but I don't want this to be about getting attention or "likes" or any of that. This is to help others who are interested to know what it's like for me and to stay updated. I may overshare, but what's the point of keeping things to myself at this point?
The Situation
On Wednesday, January 23, 2013, I received my initial diagnosis from the Otolaryngology Department at the University of Michigan. Non-Hodgkins Lymphoma, which I will likely refer to as "NHL" in future posts. Right now, the pathologist(s) at U of M are still working on the three lymph nodes that were removed from my neck on Friday, January 18 to see specifically what kind of NHL is at work/play in my system. I got a CT scan of my chest, abdomen, and pelvis on Friday, January 25 and am scheduled for a PET scan this Tuesday. Both of those scans will help Dr. Marcia Liepman at the West Michigan Cancer Center (conveniently located in downtown Kalamazoo) determine the stage of the lymphoma on Friday, and I assume that we'll get some basic information at that point about treatment options. I have not had any other symptoms besides the lump in my neck so I expect to be either Stage 1 or 2. I will be very surprised if I at a later stage that that. I also feel grateful to have a diagnosis after five months, having a good friend who has survived NHL but was misdiagnosed for the first year or so.
The most common response I'm getting from people is that they are sorry this is happening to me. I don't know what I would say to me in this situation, but I understand that people experience some pressure to say the "right" thing in moments like this. I feel very clear that there is not a "right" thing to say, and that there isn't really anything that could be said that would change the situation. It's a very strange thing to "out" myself as a cancer survivor to people but it also seems weird to NOT tell people who I have relationships with. I've also been contemplating the various terms associated with this situation- "survivor" in particular. An elder coached me yesterday to think of "surpassing" this situation and not simply surviving. Still, it's better to be thinking of myself as a cancer survivor rather than a cancer patient. He also encouraged me to think of this as a "situation" rather than a problem or obstacle, which was quite a comforting thought this morning compared to the last few mornings when I woke up with a panicked gasp. There is such power in the words we choose to use, which reminds me of Don Miguel Ruiz' Four Agreements. If you haven't had a chance to read that short book and are looking for something, I highly recommend it.
As I said above, I have no other symptoms. This means that I'm staying in school, keeping my job, and maintaining as much normalcy in my life for as long as I can. I look forward to having more information to share, and all I need right now is your love and positive energy (and prayers if you're into that). I would prefer to have a "cancer-free" Facebook page for now, but will likely share this blog via Facebook at some point. Thanks for reading, and may you be well.
P.S. The title of this blog is adapted from a song that we sang yesterday:
Porque te amo tanto!
Porque te amo tanto, tanto, tanto!
Porque te amo tanto!
Con todo mi corazon.
It means "because I love you so much, with all of my heart" and I modified it to say "Porque Nos Amo Tanto" or "because I love us all so much."
The most common response I'm getting from people is that they are sorry this is happening to me. I don't know what I would say to me in this situation, but I understand that people experience some pressure to say the "right" thing in moments like this. I feel very clear that there is not a "right" thing to say, and that there isn't really anything that could be said that would change the situation. It's a very strange thing to "out" myself as a cancer survivor to people but it also seems weird to NOT tell people who I have relationships with. I've also been contemplating the various terms associated with this situation- "survivor" in particular. An elder coached me yesterday to think of "surpassing" this situation and not simply surviving. Still, it's better to be thinking of myself as a cancer survivor rather than a cancer patient. He also encouraged me to think of this as a "situation" rather than a problem or obstacle, which was quite a comforting thought this morning compared to the last few mornings when I woke up with a panicked gasp. There is such power in the words we choose to use, which reminds me of Don Miguel Ruiz' Four Agreements. If you haven't had a chance to read that short book and are looking for something, I highly recommend it.
As I said above, I have no other symptoms. This means that I'm staying in school, keeping my job, and maintaining as much normalcy in my life for as long as I can. I look forward to having more information to share, and all I need right now is your love and positive energy (and prayers if you're into that). I would prefer to have a "cancer-free" Facebook page for now, but will likely share this blog via Facebook at some point. Thanks for reading, and may you be well.
P.S. The title of this blog is adapted from a song that we sang yesterday:
Porque te amo tanto!
Porque te amo tanto, tanto, tanto!
Porque te amo tanto!
Con todo mi corazon.
It means "because I love you so much, with all of my heart" and I modified it to say "Porque Nos Amo Tanto" or "because I love us all so much."
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