Sorry I haven't posted in awhile...the past two weeks have been a whirlwind of activity and doctors' visits. Last week I had a bunch of different scans and tests, as well as a very interesting visit to the fertility doctor that for modesty's sake I will not be blogging about.
Last Friday I had my second visit with Dr. Penley and received some very good news. The PET scans did not show cancer anywhere in my body besides my neck, meaning that I am in stage I/II of this disease. Since we managed to catch this relatively early, I will only be having four months of chemotherapy and then a month of radiation (as opposed to much longer treatments if I were in a later stage), which is fantastic news.
Yesterday I had my first dose of chemotherapy, and I have to say that it really was not all that bad. Basically all it involved was sitting in a recliner for three hours reading a book while nurses came by and switched out various bags into my IV. All the patients receive their treatments in the same room, and the atmosphere in there is actually pretty nice with people conversing and commiserating over their experiences. The regimen of drugs I am receiving is called ABVD (there is a Wikipedia page on it for those who are interested), and one of these chemicals is bright red, which is sort of weird to watch go into your arm (it also makes your pee neon orange which is funny). The nurses gave me all sorts of warnings about what to be careful about while receiving these drugs because apparently if the IV gets blocked and the fluid spills onto your skin, you can get burned. Pretty ironic considering they are pumping this stuff directly into the bloodstream...
I slept most of the day yesterday, and aside from general feeling of crappiness, I was in pretty good spirits. I did not get sick (thank you $650 anti-nausea medication!) and actually ate a bunch of pizza for dinner. Basically yesterday was like any other day so far in my life of unemployment. People say the first day is easy and the following days are when things get difficult, but I am still feeling just fine this morning. No big plans for Thanksgiving this year considering everything that is going on, but at least the Godfather trilogy is on TV.
Thursday, November 26, 2009
Friday, November 13, 2009
The first visit to the oncologist
I had my first visit with my oncologist today and it went really well...about as well as I could have hoped for. My doctor is really nice, and seems like real no-nonsense, straight-shootin' type of guy, which is good. I still don't have any idea about what stage or where I stand with this disease, but have a bunch of tests scheduled next week and will know more when I go back to Dr. Penley's office a week from today. I do know that one test will involve me drinking some sort of radioactive milkshake and then having fancy machines scan my body, which is pretty cool.
I went ahead and had a sample of bone marrow taken today, which was wholly unpleasant. Basically you have to lie on your stomach while a nurse holds you down and the doctor jabs a huge needle in the the bone just above your ass. My doc is a pretty big guy, and he had to put all of his weight into it, essentially pinning me to the table for like ten minutes, causing supreme discomfort. It hurt a lot, but was more just scary and severely uncomfortable. I did get to pull my pants down and show my butt to a bunch of nurses which I thought was funny.
I was also scheduled today for probably the most surreal thing so far: a visit to the sperm bank. To me that seems even weirder than being diagnosed with cancer for my 27th birthday. Apparently chemo renders some guys infertile, and so I have been advised to put some of my boys on ice just in case before the treatment starts. Because I am still lightyears away from having children of my own (but have always wanted to someday), this whole concept is just making me think of my future-self in such more concrete and practical ways. Very odd.
I went ahead and had a sample of bone marrow taken today, which was wholly unpleasant. Basically you have to lie on your stomach while a nurse holds you down and the doctor jabs a huge needle in the the bone just above your ass. My doc is a pretty big guy, and he had to put all of his weight into it, essentially pinning me to the table for like ten minutes, causing supreme discomfort. It hurt a lot, but was more just scary and severely uncomfortable. I did get to pull my pants down and show my butt to a bunch of nurses which I thought was funny.
I was also scheduled today for probably the most surreal thing so far: a visit to the sperm bank. To me that seems even weirder than being diagnosed with cancer for my 27th birthday. Apparently chemo renders some guys infertile, and so I have been advised to put some of my boys on ice just in case before the treatment starts. Because I am still lightyears away from having children of my own (but have always wanted to someday), this whole concept is just making me think of my future-self in such more concrete and practical ways. Very odd.
Wednesday, November 11, 2009
Inital letter to friends upon receiving diagnosis
Hello Friends-
I know I have only spoken to a few of you all about this, and so for most of you this news will be quite shocking and for that I apologize, but I have decided that a mass email is really the only practical way to quickly tell everyone what is going on in my life right now and what the future months hold for me.
After a few mystery symptoms and several doctors' visits over the past few weeks, I have been diagnosed with Hodgkin's Lymphoma, more commonly known simply as Hodgkin's disease. Before anyone gets too upset or starts freaking out, I need to tell you that the physicians are telling me that this is a highly treatable form of cancer, with complete, long-term remission reported in nearly 90% of all patients in the lower stages of the illness. Those statistics increase even more for someone of my age and (relative) good health. In short, I am completely confidant I will be just fine. All the medical professionals I have talked to today have said as much (although as with any cancer, there are no guarantees). Knowing the high success rates with nearly all cases of Hodgkin's, I am certain of my long-term health and well-being.
I have not yet been to an oncologist (the first visit will be sometime in the next few days), so I am still a bit in the dark as to what my specific treatment plan will be, but from everything I have read and been told there will most likely be a combination of chemotherapy and radiation over the coming months, probably starting immediately. From what I understand, a lot of the specifics will be determined by which stage the cancer is currently in, so I am really hoping I have caught this early (although at this time there is no way of knowing without further testing). All of this will most likely be resolved and laid out in the coming days.
I know that it is possible to completely recover from this illness; therefore I fully plan on doing so. The next year will be full of many challenges (and will obviously not very fun), but I know that I am awesome and I will have literally the best support system of all time, so I am not very worried.
For those of you in New York, it is now highly unlikely I will be living up there with you all anytime soon, although I will probably be there sometime in the next month or two to move out of my apartment. I will obviously want to see and speak with as many of you all as possible. Also, for those of you not in Nashville, please come visit if you so desire, although I imagine I will often not be my usual fun self over the next year or so.
To preempt a few questions I know people will ask me:
Yes, I have health insurance (luckily).
Yes (at this point) I feel completely normal and fine.
Yes I think I am probably going to lose my hair.
Yes you may come visit me. I won't be able to deal with this without y'all.
For those of you with inquiring minds, more information about Hodgkin's Lymphoma can be found at the following websites (and there are dozens more):
http://en.wikipedia.org/wiki/Hodgkin%27s_lymphoma
http://www.leukemia-lymphoma.org/all_page?item_id=8312
http://www.cancer.gov/cancertopics/types/hodgkin
For those of you that I did not personally contact to parley this information, I apologize. After calling my family and a few very close friends, I realized that saying all this again and again was getting taxing, so I decided to send this blanket email to over a hundred of you. Some of you I have not seen in years, some of you I saw or spoke with today. Please understand the difficulty that comes with telling everyone, but I decided it would just be easier to tell everyone at once. I also heavily considered not sending this email until I had met with an oncologist, but since I had already begun to tell a select few, I decided it best that everyone find out about this from me personally and not via hearsay. As of right now, if you are receiving this email you know everything I know, which is still obviously not all that much.
I imagine that many of you are going to want to email and call and instant message me in the next few days and I highly encourage everyone to do so if you desire, but bear in mind that I anticipate being pretty busy figuring everything out in the coming weeks and might not be able to respond/talk to everyone. However, please keep the good vibes and thoughts coming, as they will only make me stronger. Although I am not a religious person, if it makes you feel better and you think it will give me strength, please pray for me to the deity or spirit or creature of your choosing. I am a firm believer that positive thinking and good vibes and prayers will only aid me in this endeavor, regardless to whom they are given.
One last thing- this email list has been sent via bcc to avoid needless reply-alls, and I am certain I will have left some people off who need to know. Please let me assure you that this is by no means secret or privileged information. Tell your friends, tell your parents, tell your co-workers, tell a stranger…it really does not matter to me. In fact, the more people that are thinking about this the better, as I am a firm believer in the power of collective positive thinking. Feel free to forward this email to anyone you want.
I love you all.
-Jay
I know I have only spoken to a few of you all about this, and so for most of you this news will be quite shocking and for that I apologize, but I have decided that a mass email is really the only practical way to quickly tell everyone what is going on in my life right now and what the future months hold for me.
After a few mystery symptoms and several doctors' visits over the past few weeks, I have been diagnosed with Hodgkin's Lymphoma, more commonly known simply as Hodgkin's disease. Before anyone gets too upset or starts freaking out, I need to tell you that the physicians are telling me that this is a highly treatable form of cancer, with complete, long-term remission reported in nearly 90% of all patients in the lower stages of the illness. Those statistics increase even more for someone of my age and (relative) good health. In short, I am completely confidant I will be just fine. All the medical professionals I have talked to today have said as much (although as with any cancer, there are no guarantees). Knowing the high success rates with nearly all cases of Hodgkin's, I am certain of my long-term health and well-being.
I have not yet been to an oncologist (the first visit will be sometime in the next few days), so I am still a bit in the dark as to what my specific treatment plan will be, but from everything I have read and been told there will most likely be a combination of chemotherapy and radiation over the coming months, probably starting immediately. From what I understand, a lot of the specifics will be determined by which stage the cancer is currently in, so I am really hoping I have caught this early (although at this time there is no way of knowing without further testing). All of this will most likely be resolved and laid out in the coming days.
I know that it is possible to completely recover from this illness; therefore I fully plan on doing so. The next year will be full of many challenges (and will obviously not very fun), but I know that I am awesome and I will have literally the best support system of all time, so I am not very worried.
For those of you in New York, it is now highly unlikely I will be living up there with you all anytime soon, although I will probably be there sometime in the next month or two to move out of my apartment. I will obviously want to see and speak with as many of you all as possible. Also, for those of you not in Nashville, please come visit if you so desire, although I imagine I will often not be my usual fun self over the next year or so.
To preempt a few questions I know people will ask me:
Yes, I have health insurance (luckily).
Yes (at this point) I feel completely normal and fine.
Yes I think I am probably going to lose my hair.
Yes you may come visit me. I won't be able to deal with this without y'all.
For those of you with inquiring minds, more information about Hodgkin's Lymphoma can be found at the following websites (and there are dozens more):
http://en.wikipedia.org/wiki/Hodgkin%27s_lymphoma
http://www.leukemia-lymphoma.org/all_page?item_id=8312
http://www.cancer.gov/cancertopics/types/hodgkin
For those of you that I did not personally contact to parley this information, I apologize. After calling my family and a few very close friends, I realized that saying all this again and again was getting taxing, so I decided to send this blanket email to over a hundred of you. Some of you I have not seen in years, some of you I saw or spoke with today. Please understand the difficulty that comes with telling everyone, but I decided it would just be easier to tell everyone at once. I also heavily considered not sending this email until I had met with an oncologist, but since I had already begun to tell a select few, I decided it best that everyone find out about this from me personally and not via hearsay. As of right now, if you are receiving this email you know everything I know, which is still obviously not all that much.
I imagine that many of you are going to want to email and call and instant message me in the next few days and I highly encourage everyone to do so if you desire, but bear in mind that I anticipate being pretty busy figuring everything out in the coming weeks and might not be able to respond/talk to everyone. However, please keep the good vibes and thoughts coming, as they will only make me stronger. Although I am not a religious person, if it makes you feel better and you think it will give me strength, please pray for me to the deity or spirit or creature of your choosing. I am a firm believer that positive thinking and good vibes and prayers will only aid me in this endeavor, regardless to whom they are given.
One last thing- this email list has been sent via bcc to avoid needless reply-alls, and I am certain I will have left some people off who need to know. Please let me assure you that this is by no means secret or privileged information. Tell your friends, tell your parents, tell your co-workers, tell a stranger…it really does not matter to me. In fact, the more people that are thinking about this the better, as I am a firm believer in the power of collective positive thinking. Feel free to forward this email to anyone you want.
I love you all.
-Jay
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