We got out for a good long walk today - doing the grand tour of Louisville, including some of the historic sites mentioned at the Louisville historical society. We had lunch at B.O.B.S. sandwich shop and then walked home. It was about a 3.5 hour walk including lunch. I can see how this thing is going to go. The surgeon told George that he couldn't do any exercise except walking until he got his stitches out, which happens this coming Thursday. No biking, no hockey, no soccer, ho skiing, etc., etc.
"Well, can't I at least do the stationary bike?" George asked.
"No stationary bike! Nothing that gets your heart rate up or the capillaries in your neck will break!" said Dr. King.
George is already chafing under these restrictions. So, of course, we had to go for the mega-walk.
My other main challenge is getting George to eat - his appetite has gone down, and we want to keep his strength up. So far, Blizzards at Dairy Queen seem to be the answer - easy to swallow post-neck surgery and mmm-mmm good!
We have a big week booked of interviewing oncologists - thanks to everyone who gave us recommendations!
Sunday, February 28, 2010
Saturday, February 27, 2010
Geo Health - V2.0
We were chatting this morning about how we'll select our oncologist. Our great network of friends and families have already jumped into action and have started looking around for oncologists that we should consider. As we were chatting about this over breakfast, we realized that this feels like we're about to put out an RFI/RFP for cancer treatment.
So, being the geeks that we are, we've decided to formalize this into a project - we're calling it Geo Health v2.0. Naming this will help us, I think. We can focus energy on it, work on it, but also have it bounded into some sort of box so we can continue to do the normal stuff of life. Plus, Susan is an awesome project manager so I'm excited about having her sink her teeth into this task! I will be the primary stakeholder and represent the business. And boy do I care about the project being successful...
So right now, we're developing the RFP that we'll be informally delivering to oncologists over the next couple of weeks. I suspect our questions will look like this:
One other interesting note. I was talking to my ENT guy (Ear, Nose and Throat). I really like him. If you need an ENT for whatever reason, drop me a note and I'll send his contact info. Anyway, I was noting to him that there's a bigger non-Hodgkins than Hodgkins lymphoma patient population in the US so, surprise, surprise, the drug companies are putting more money into NH (non-Hodgkins) research, clinical trials, etc. So I was sort of thinking that you should really get a popular disease so you get leverage more research money focused on your health problem. He had an interesting, different perspective. His thought was that Hodgkins treaments were working, people had good survival rates, so the science/research was being put into more difficult disease areas. So his thought was that it was actually good to get a boring, treatable version. If you've got a disease that requires you to dip into clinical trial work to get the best outcome you're probably in a more risky proposition than a more well understood disease progression with good treatment options. So for now I'm going to think that way and take this as another positive sign of things to come...
So, being the geeks that we are, we've decided to formalize this into a project - we're calling it Geo Health v2.0. Naming this will help us, I think. We can focus energy on it, work on it, but also have it bounded into some sort of box so we can continue to do the normal stuff of life. Plus, Susan is an awesome project manager so I'm excited about having her sink her teeth into this task! I will be the primary stakeholder and represent the business. And boy do I care about the project being successful...
So right now, we're developing the RFP that we'll be informally delivering to oncologists over the next couple of weeks. I suspect our questions will look like this:
- How many Hodkins Lymphoma patients have you treated?
- Survival rates over 1, 5, 10 years? (I think we may be able to get this stuff from national cancer institute information). If anyone knows how to get this info, please post a comment!
- Details of proposed diagnostics/treatment plan
- Side effects of treatments. All things being equal, I'd sure like to minimize side effects. Of course, the main effect is to stay alive for a long time - will certainly trade a lot of side effects to fulfill requirement #1...
- Logistics of treatment - how frequently, where, how long, etc. You don't want logistics to be a dominant selection criteria but on the other hand, the simple truth is that you do need to continue to function in the world while you're going through this stuff.
- Insurance implications. So far our insurance has been great but we obviously want to see any financial implications up front rather than be hit with them after the fact.
- and since we're from Boulder County, we have to consider the soft stuff - how does the place feel, how holistic an approach to they have, a focus on treating the entire person and not just disease progression.
One other interesting note. I was talking to my ENT guy (Ear, Nose and Throat). I really like him. If you need an ENT for whatever reason, drop me a note and I'll send his contact info. Anyway, I was noting to him that there's a bigger non-Hodgkins than Hodgkins lymphoma patient population in the US so, surprise, surprise, the drug companies are putting more money into NH (non-Hodgkins) research, clinical trials, etc. So I was sort of thinking that you should really get a popular disease so you get leverage more research money focused on your health problem. He had an interesting, different perspective. His thought was that Hodgkins treaments were working, people had good survival rates, so the science/research was being put into more difficult disease areas. So his thought was that it was actually good to get a boring, treatable version. If you've got a disease that requires you to dip into clinical trial work to get the best outcome you're probably in a more risky proposition than a more well understood disease progression with good treatment options. So for now I'm going to think that way and take this as another positive sign of things to come...
Friday, February 26, 2010
Telling Everyone...
Wow. A big day of telling everyone at work about what's going on with my health and also disseminating the news to various virtual communities. In some ways, it was great. Received all sorts of support and positive affirmations. And I think it was harder on most of the recipients to get the news than it was for me to deliver it. I've been processing this for a couple of weeks with increasing certainty that I was going down this path. For most of the people I talked to today, it was quite a shock. It felt bad to put this black news into everyone's day but I felt like it was better to get it out into the open and have people process it and then move on, versus having it leak out through various conversations. So now people can spend the weekend feeling bad about the news, thankful for the good things in their life, worried about me, worried about themselves, process, process, process... I hope this blog will be a way for me to keep everyone in the loop that cares to think about me and I can do all my thinking and worrying here and not carry it around with me into all the other aspects of my life.
I am not just a cancer patient! I'm a father, a husband, a soccer player, a mountain biker, a road biker, a software guy, a sci-fi junkie. And yes, I'm also a person with cancer. And I will pay attention to it and I will do everything I can to get and stay healthy. So on these pages I'll think and talk a lot about cancer. And away from these pages I will continue to live the rest of my life the best that I can.
Ok, that's a quick post for today. More thoughts over the weekend as I get ready to interview oncologists and select my health care team that will help me manage through this illness and back to health!!!
I am not just a cancer patient! I'm a father, a husband, a soccer player, a mountain biker, a road biker, a software guy, a sci-fi junkie. And yes, I'm also a person with cancer. And I will pay attention to it and I will do everything I can to get and stay healthy. So on these pages I'll think and talk a lot about cancer. And away from these pages I will continue to live the rest of my life the best that I can.
Ok, that's a quick post for today. More thoughts over the weekend as I get ready to interview oncologists and select my health care team that will help me manage through this illness and back to health!!!
Thursday, February 25, 2010
This is Susan. I am a breast cancer survivor - I have now passed my six-year mark cancer free. I always thought that, due to my history, I would be the one with health problems. George is in great shape - healthy, fit, and extremely active. He can outrun, outclimb, or outski me any day of the week. When he told me he had a lump on his neck I thought nothing of it - I just assumed it was some kind of infection or allergic reaction. Then when he called to tell me that the doctor had sent him over to another doctor's office for a CAT scan and needle biopsy, I started to get scared. The whole thing was starting to bring back bad memories - of how a seemingly innocent diagnosis at first ("hey, we just need to get another mammogram because we thinkwe missed something") can turn into, "Guess what? You have cancer." When the ear/nose/throat doctor told George he had to have a bigger biopsy, we knew we were in trouble. I went with George to see the doctor pre-surgery, and he told us he suspected lymphoma, due to the fact that George was otherwise healthy and had no infections. During the surgery i was trying not to panic - my sister showed up to keep me company and she helped by letting me vent all my fears. What if it's really bad? What if George is in a lot of pain? What if he dies and I'm left all alone? What does our future hold? Then I decided I'd better relax - as George is saying, "I'm not quite dead yet!". We have agreed to take this one day at a time - not jump to conclusions about what is going to happen, but to take the path that is in front of us, do the work we need to do, and try to find a little bit of joy in every day that we have together. And really, isn't that all that any of us can do, cancer or not?
Warning - nasty picture of my sutures
Here's what my neck looks like right now. If only I had discovered this around Halloween I would be the life of the party!
I have cancer...
On the 16th of February, 2010 I went into the doctor's office to have them look at a lump on my neck. I had noticed it a few days earlier and had decided that if didn't go down by Monday the 15th I would have someone look at it.
Here's the chronology of how that day went:
So there's a song that has a lyric in it that says: "I guess we're all just one phone call from our knees". That's pretty much what that day felt like.
And one other thought. Our health care system may suck in a lot of ways. But if you're reasonably affluent and live somewhere like Boulder, Colorado, it feels like a pretty kick-ass system. At least my Tuesday the 16th sure felt like I instantly had a set of super skilled, super caring people who were all strangers to me at the beginning of the day jump to my aid to help me figure out what was going on in my immune system. Of course, if your poor, non-white and not living somewhere like Boulder your care situation would be way different. And I guess that's the essence of the health care debate. But that's a topic for another blog post...
Over the weekend, we get a nice ski day in on Sunday and manage to get through Monday and Tuesday without too much angst.
I wake up in the recovery room with Susan there to feed me ice chips and bring me back into the world of the living. Apparently I was quite entertaining in the post-op period (which I of course can't remember). Two things about my performance stand out:
- I was too hot and successfully disrobed down to my underwear before the nurses could get me covered up
- I immediately started asking if I could have sex with my wife that night.
I've been told that this second item is a not too uncommon question from male patients. So it's good to know that the reptilian parts of our brains are the first things to turn back on after a general and that our first thought is about intercourse. That strikes me as very comforting in some way...
As I'm at home relaxing on the couch, we get the call from the doctor. Initial pathology reports suggest Hodgkins Lymphoma. We'll know more in the next few days about the specifics of the pathology report and we'll probably do more tests (full body CT scan) to see if the cancer has progressed from my neck into other regions of my body.
Based on what research I've done and what we know from the diagnostics, I'm putting myself at either a type IA (one section of glands affected, no other symptoms) to perhaps IIB (multiple gland sections involved, all above my diaphragm, some symptoms; I've had some itchy skin that can be a symptom of lymphoma).
So that's the timeline to date. I now Officially Have Cancer.
Next steps:
I'm pretty sure the first four will happen. Will do everything I can to make 5 come true as well... Too many great things to do, too many great people to have in my life to call it quits anytime soon!
Here's the chronology of how that day went:
- 9:30, into see nurse practitioner. Diagnose - hmm, not good. Your healthy, no fever, no obvious signs of infection but you've got really inflamed lymph nodes in your neck. Not good.
- 10:30, over to the hospital to get a chest x-ray and CT scan of my neck
- 12:15, done with CT scan and chest xray. Back home to work for a couple of hours, waiting for the radiologist to look at the scans
- 1:55, call from my doctor's office. They've setup a 3:00 appt with an ear, nose and throat doctor to look at my neck.
- 3:30, into see the ENT. Needle biopsy of the glands on my neck. Also a scope (a 12" long fibre optic scope), up your nose, down your throat to look at your larynx, check for throat cancer. Sort of felt like having the worlds biggest snot go UP your nose. Not recommended.
- 4:00. Initial diagnosis, based on scoping and CT pictures - some form of lymphoma.
- Back to my primary care physician. They agree that a lymphoma diagnosis is the most likely one given the CT scan, chest x-ray and scope results. Great...
So there's a song that has a lyric in it that says: "I guess we're all just one phone call from our knees". That's pretty much what that day felt like.
And one other thought. Our health care system may suck in a lot of ways. But if you're reasonably affluent and live somewhere like Boulder, Colorado, it feels like a pretty kick-ass system. At least my Tuesday the 16th sure felt like I instantly had a set of super skilled, super caring people who were all strangers to me at the beginning of the day jump to my aid to help me figure out what was going on in my immune system. Of course, if your poor, non-white and not living somewhere like Boulder your care situation would be way different. And I guess that's the essence of the health care debate. But that's a topic for another blog post...
- Wed, 17 Feb. Call from the doctor. Needle biopsy shows no cancer cells. Sounds like good news! But, he's concerned that they just didn't get a big enough sample. Again, the symptoms indicate lymphoma. Healthy, no other signs of anything my immune system could be fighting that would make my lymph glands get this big. So, next step. Incisional biopsy. Under a general. In the hospital. Great...
- Thursday, 18 Feb. Meet with the ENT doc and Susan. We all agree on the incisional biopsy under a general. Day surgery, scheduled for a week and a half out. I ask to see if they can move it up. Waiting is hard; I want an answer so we can plan our response and get after a solution.
- Friday, 19 Feb. The ENT doc's office calls. They've found a spot for me on Wed morning.
Over the weekend, we get a nice ski day in on Sunday and manage to get through Monday and Tuesday without too much angst.
- Wed, 24 Feb. Into the hospital in the morning. Worried about the general because my throat and airway have seemed a bit congested over the last couple of days. Could be pressure from the lymph glands in my neck, could be anxiety, could be asthma, could be throat cancer. So basically I'm worried that I'll go to sleep a relatively healthy 51 yr. old guy with some lumps in his neck and (maybe) wake up (or not wake up) with a shit pot of problems. Susan is with me in the pre-op room and does a good job of keeping me sane. The surgery gets delayed about 90 minutes because of a backup in the OR which is actually really good for my nerves. At some point, it's just too much effort to stay anxious. The anesthesiologist comes in and I express my concerns and he assures me that I'll be fine. Finally, we're off to the OR, And with the wonder of modern medicine, for the next 90 minutes I have no idea what' s going on...
I wake up in the recovery room with Susan there to feed me ice chips and bring me back into the world of the living. Apparently I was quite entertaining in the post-op period (which I of course can't remember). Two things about my performance stand out:
- I was too hot and successfully disrobed down to my underwear before the nurses could get me covered up
- I immediately started asking if I could have sex with my wife that night.
I've been told that this second item is a not too uncommon question from male patients. So it's good to know that the reptilian parts of our brains are the first things to turn back on after a general and that our first thought is about intercourse. That strikes me as very comforting in some way...
As I'm at home relaxing on the couch, we get the call from the doctor. Initial pathology reports suggest Hodgkins Lymphoma. We'll know more in the next few days about the specifics of the pathology report and we'll probably do more tests (full body CT scan) to see if the cancer has progressed from my neck into other regions of my body.
Based on what research I've done and what we know from the diagnostics, I'm putting myself at either a type IA (one section of glands affected, no other symptoms) to perhaps IIB (multiple gland sections involved, all above my diaphragm, some symptoms; I've had some itchy skin that can be a symptom of lymphoma).
So that's the timeline to date. I now Officially Have Cancer.
Next steps:
- - figure out more details on the progression of the disease
- - interview and select an oncologist
- - agree on treatment course
- - get treated
- - live (hopefully) long and disease free life.
I'm pretty sure the first four will happen. Will do everything I can to make 5 come true as well... Too many great things to do, too many great people to have in my life to call it quits anytime soon!
Welcome!
Hello! Susan and I have decided to create this blog to write about my experience with cancer. I'm not sure how much we'll write but this feels like a good way of coping with the experiences we're about to go through. I (George) am looking forward to getting through this illness and being around for a good long time!
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