That first post pretty much explains what happened with my health and diagnosis, however gives no insight into what else was going on with us around that time. I thought a little context might give a more full picture of what our lives were like around that time. I had just finished my third year of medical school and last written Medical Licensing Exam I'd have to take to graduate. Our beautiful little Pearl was born on May 24, the first Monday of my 3 week break in-between 3rd and 4th year. (It could not have been planned any better)
Mid-June I started my 4th year of med school with an OB/GYN rotation. This was a rotation that I needed to do well in since I was still considering it as a profession. It was a fairly stressfull rotation, but not as much so as the ENT surgery rotation that I did through July. ENT is a lot more competetive field and I had to be on the top of my game if I wanted to learn a lot, impress the residents and attendings, and receive good letters of recommendations. The hours were long and it was a rather strenuous month, but I did very well.
In August I started a rotation in anesthesiology, the last of the fields I was interested in and able to do a rotation for. This rotation was a little bit more laid back, which gave me the time to start working out as well as getting going on my residency application. Ultimately, I decided my family and I would find the best fit for us in the field of anesthesiology. It was a whirlwind getting all of my letters of recommendation and the rest of the application in on fairly short noticed, but I managed to get it all submitted in a timely manner.
This and the next several months were extremely complicated by the stress of Pearl's condition. She had developed a severe case of silent reflux, which robbed her mother and I of much needed sleep, not to mention changing her whole persona from such a happy, easy going baby to a very needy, fussy baby who gave her mother the worst time with eating. We love her more than anything, but that was a dark time. Seeing your baby wake up in the middle of the night screaming and not being able to calm her down for hours, then when she finally falls asleep only to awaken as soon as she is put down. Insanity thrives on such situations. Her mother is a saint! Because of my schedule, illness, and Brooke's love I was spared from much of the pain of those situations.
My load did lighten, which allowed me to help more with Pearl and get some much needed R&R (3rd and 4th year of school were strenuous at times). I took an anatomy course in Sept. that allowed me to finish quickly so we could take a trip to see Brooke's family in Utah. We had a great time seeing family, friends, and just relaxing. However, by the time we left my abdominal pain was almost at it's peak: keeping me up at night, affecting my appetite, and even bothering me to the point of needing ibuprofen during the day.
During October I had a rotation dedicated soley to tutoring medical underclassmen who needed some extra help. This was a good rotation to have since it was not all that time consuming and allowed me to seek the medical attention I needed without postponing any rotations. October also marked the beginning of interview season for residencies.
Wednesday, June 22, 2011
How It All Began
In August of last year I decided it was time to start working out and getting back into shape. I had just finished what would be the most intense part of my fourth year of medical school and was going to have a lot more spare time.
I began lifting weights, jogging, and playing basketball once a week. Normally, I get to a point where I feel like I'm back in shape after a week or two. However, this time after a month of working out I was still feeling like I couldn't quite get my legs under me in basketball and was still a sore after I'd play and I was not near where I usually am lifting weights. I noticed one other thing, I was having a harder time than usual doing sit-ups. I hate sit-ups and have never been a big sit-up guy, but I could not do near as many as usual and that was not getting any better, and I had a weird feeling of fullness in my abdomen.
One night in September after stuffing my face with my family at Lone Star Steakhouse I was in considerable discomfort. My abdomen was hurting and it did not seem to get much better as the night went on as it usually does after a good face stuffing. I thought maybe it was just gas pains, but I did not have gas and found that no positioning really made it feel any better. I ended up having to take some ibuprofen to sleep that night. From that time forward I began having this abdominal pain every night. Some nights it was worse than others. After about a week of this my wife made me a doctor's appointment for the end of the month because I was in desperate need of a regular check-up anyway. As time went on it got to the point where I was having to take 800mg (4 pills) of ibuprofen at night just to be able to sleep or I would lay there until 2 a.m. twisting and turning trying to get comfortable enough to fall asleep until I did.
After a week or two of the nightly abdominal pain I noticed a swollen lymph node above my collar bone on the left side. Well, knowing what I knew of medicine, I knew that was NOT a good sign. Supraclavicular lymph nodes, as they are called, are a very common sign of abdominal malignancy. It started out as one node that was rubbery and tender, which could be considered a good sign since lymph nodes enlarged by cancer are often rock hard and painless. Soon it was several swollen tender lymph nodes. I pretty much knew at that point I was dealing with something fairly serious. Most likely either cancer or some form of a reactive disease process (think auto-immune disease ie. lupus or something more rare). Thinking back I had also had night sweats on a couple occasions, another common cancer symptom.
My doctor's appointment rolled around and on came all the testing. My initial blood work was all normal except my liver function tests being slightly elevated, so they first went after that thinking it may have been an issue with my liver. Well, after testing for Hepatitis, HIV, Mono, and just about anything else that could have been an issue with my liver we were no closer to a diagnosis. Everything was negative and normal. It was time for a CT scan. I had the CT scan done. (After spilling a good portion of the berry contrast "smoothie" I was supposed to drink, all over myself and my car. Think opening a small bag of chips and pulling too hard--yep just like that.) One of the perks of being a part of the medical field, I've found, is "professional courtesy". When my CT scan was done they asked if I wanted to talk to the radiologist. I wasn't sure what the nurse was talking about at first or why I would want to talk to a radiologist. I knew what the CT scan was all about. After a second I realized they were asking me if I wanted to go watch the radiologist read my scan. Ummmm, YES. They walked me to the reading room where I met the Dr. who would read my scan.
I sat back while he finished the previous scan and talked with him about my medical history. Then, up came my scan. It was not pretty, even I could tell that. He was obviously slightly uncomfortable as he pointed out the para-aortic, mesenteric, retro-peritoneal, and various other lymph nodes that were very enlarged. His first comment was that it was no big surprise that I was having a little abdominal pain. The differential diagnosis was not a surprise to me, lymphoma or some sort of reactive process. He informed me they would need to do a biopsy of the supraclavicular lymph nodes to be able to tell which it was and offered his condolences for having to give me such crappy news. I took full advantage of the "professional courtesy" being extended to me and had them make me a cd with the images since I would most likely need to show the surgical oncologist who'd be doing my biopsy the scan.
I was able to get an appt. with the surgical oncologist and schedule the biopsy within a couple days. The results took another day or two to get back, but I was able to get a preview and even look at the slides with the pathologist. I was so grateful I did not have to wait as long as most people do to get in to those doctors and to receive the results of my biopsies. At this point I had read up a little more on the different types of lymphoma and knew that Hodgkin's is fairly common in people my age and has a good prognosis and I was hoping that's what it was if it were to be malignant. It was not. The pathologist informed me that after staining the specimen they had concluded it was not Hodgkin's, but Anaplastic Large Cell Lymphoma, a sub-type of Non-Hodgkin's Lymphoma.
In medicine and with cancer hearing the word Anaplastic with any type of cancer is usually synonomous with a terrible prognosis, so naturally I was a little concerned before doing any research. The pathologist had informed me he himself had had lymphoma in med school and that was over twenty years ago, so he was sure I could overcome it. I soon also found out the type of ALCL I have was ALK (anaplastic lymphoma kinase) +, which is a very good sign. The prognosis for ALK neg ALCL is 20-40% 5 yr survival. For ALK + ALCL the prognosis is anywhere from 70-94% cure rate after chemotherapy. Although this is a very aggressive cancer that also meant it would most likely respond well to chemo. After researching a bit more it seemed like if I were to get a lymphoma this would be one I would actually choose over most others.
Knowing the research, prognosis, the fact that I was young (29) and healthy, and that I am not the type to freak about things or roll over and give up, I was sure I would do my chemo be in that 70-94% who are cured after initial chemotherapy and be able to get on with my life. It seems God had another plan for me. But, I'll get into that later.
By the end of the next week I had had a port-o-cath placed in my chest for chemo, double bone marrow biopsies, and abdominal pain that was beginning to get pretty bad. I started chemo then. After talking with the Dr. he wanted to be go big since I was so young and healthy and my disease was fairly advanced (stage 3B) so he put me on a regimen reffered to as EPOCH (Etoposide, Prednisone, Vincristine, Cyclophosphamide, and Doxorubicin) that would be administered via IV(except prednisone, which, by the way is the most disgusting tasting medicine ever discovered) continuously over 5 days as an inpatient. I was to recieve 6 rounds of this chemo every third week (1 week on, 2 weeks off) with PET/CT scans (that check for tumor uptake) after every 2 cycles.
And so, at the end of October I began on this path of hopeful healing. I knew things would get worse before they got better, but I was up for the challenge. I've always believed I could overcome any obstacle that was put in front of me and this would be no different. It doesn't matter how bad it sucks you just do it because you have to, period, there is no other choice and no point complaining about it. At least that was my attitude toward the whole thing.
I began lifting weights, jogging, and playing basketball once a week. Normally, I get to a point where I feel like I'm back in shape after a week or two. However, this time after a month of working out I was still feeling like I couldn't quite get my legs under me in basketball and was still a sore after I'd play and I was not near where I usually am lifting weights. I noticed one other thing, I was having a harder time than usual doing sit-ups. I hate sit-ups and have never been a big sit-up guy, but I could not do near as many as usual and that was not getting any better, and I had a weird feeling of fullness in my abdomen.
One night in September after stuffing my face with my family at Lone Star Steakhouse I was in considerable discomfort. My abdomen was hurting and it did not seem to get much better as the night went on as it usually does after a good face stuffing. I thought maybe it was just gas pains, but I did not have gas and found that no positioning really made it feel any better. I ended up having to take some ibuprofen to sleep that night. From that time forward I began having this abdominal pain every night. Some nights it was worse than others. After about a week of this my wife made me a doctor's appointment for the end of the month because I was in desperate need of a regular check-up anyway. As time went on it got to the point where I was having to take 800mg (4 pills) of ibuprofen at night just to be able to sleep or I would lay there until 2 a.m. twisting and turning trying to get comfortable enough to fall asleep until I did.
After a week or two of the nightly abdominal pain I noticed a swollen lymph node above my collar bone on the left side. Well, knowing what I knew of medicine, I knew that was NOT a good sign. Supraclavicular lymph nodes, as they are called, are a very common sign of abdominal malignancy. It started out as one node that was rubbery and tender, which could be considered a good sign since lymph nodes enlarged by cancer are often rock hard and painless. Soon it was several swollen tender lymph nodes. I pretty much knew at that point I was dealing with something fairly serious. Most likely either cancer or some form of a reactive disease process (think auto-immune disease ie. lupus or something more rare). Thinking back I had also had night sweats on a couple occasions, another common cancer symptom.
My doctor's appointment rolled around and on came all the testing. My initial blood work was all normal except my liver function tests being slightly elevated, so they first went after that thinking it may have been an issue with my liver. Well, after testing for Hepatitis, HIV, Mono, and just about anything else that could have been an issue with my liver we were no closer to a diagnosis. Everything was negative and normal. It was time for a CT scan. I had the CT scan done. (After spilling a good portion of the berry contrast "smoothie" I was supposed to drink, all over myself and my car. Think opening a small bag of chips and pulling too hard--yep just like that.) One of the perks of being a part of the medical field, I've found, is "professional courtesy". When my CT scan was done they asked if I wanted to talk to the radiologist. I wasn't sure what the nurse was talking about at first or why I would want to talk to a radiologist. I knew what the CT scan was all about. After a second I realized they were asking me if I wanted to go watch the radiologist read my scan. Ummmm, YES. They walked me to the reading room where I met the Dr. who would read my scan.
I sat back while he finished the previous scan and talked with him about my medical history. Then, up came my scan. It was not pretty, even I could tell that. He was obviously slightly uncomfortable as he pointed out the para-aortic, mesenteric, retro-peritoneal, and various other lymph nodes that were very enlarged. His first comment was that it was no big surprise that I was having a little abdominal pain. The differential diagnosis was not a surprise to me, lymphoma or some sort of reactive process. He informed me they would need to do a biopsy of the supraclavicular lymph nodes to be able to tell which it was and offered his condolences for having to give me such crappy news. I took full advantage of the "professional courtesy" being extended to me and had them make me a cd with the images since I would most likely need to show the surgical oncologist who'd be doing my biopsy the scan.
I was able to get an appt. with the surgical oncologist and schedule the biopsy within a couple days. The results took another day or two to get back, but I was able to get a preview and even look at the slides with the pathologist. I was so grateful I did not have to wait as long as most people do to get in to those doctors and to receive the results of my biopsies. At this point I had read up a little more on the different types of lymphoma and knew that Hodgkin's is fairly common in people my age and has a good prognosis and I was hoping that's what it was if it were to be malignant. It was not. The pathologist informed me that after staining the specimen they had concluded it was not Hodgkin's, but Anaplastic Large Cell Lymphoma, a sub-type of Non-Hodgkin's Lymphoma.
In medicine and with cancer hearing the word Anaplastic with any type of cancer is usually synonomous with a terrible prognosis, so naturally I was a little concerned before doing any research. The pathologist had informed me he himself had had lymphoma in med school and that was over twenty years ago, so he was sure I could overcome it. I soon also found out the type of ALCL I have was ALK (anaplastic lymphoma kinase) +, which is a very good sign. The prognosis for ALK neg ALCL is 20-40% 5 yr survival. For ALK + ALCL the prognosis is anywhere from 70-94% cure rate after chemotherapy. Although this is a very aggressive cancer that also meant it would most likely respond well to chemo. After researching a bit more it seemed like if I were to get a lymphoma this would be one I would actually choose over most others.
Knowing the research, prognosis, the fact that I was young (29) and healthy, and that I am not the type to freak about things or roll over and give up, I was sure I would do my chemo be in that 70-94% who are cured after initial chemotherapy and be able to get on with my life. It seems God had another plan for me. But, I'll get into that later.
By the end of the next week I had had a port-o-cath placed in my chest for chemo, double bone marrow biopsies, and abdominal pain that was beginning to get pretty bad. I started chemo then. After talking with the Dr. he wanted to be go big since I was so young and healthy and my disease was fairly advanced (stage 3B) so he put me on a regimen reffered to as EPOCH (Etoposide, Prednisone, Vincristine, Cyclophosphamide, and Doxorubicin) that would be administered via IV(except prednisone, which, by the way is the most disgusting tasting medicine ever discovered) continuously over 5 days as an inpatient. I was to recieve 6 rounds of this chemo every third week (1 week on, 2 weeks off) with PET/CT scans (that check for tumor uptake) after every 2 cycles.
And so, at the end of October I began on this path of hopeful healing. I knew things would get worse before they got better, but I was up for the challenge. I've always believed I could overcome any obstacle that was put in front of me and this would be no different. It doesn't matter how bad it sucks you just do it because you have to, period, there is no other choice and no point complaining about it. At least that was my attitude toward the whole thing.
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