Last December my health care provide ran the wrong test and incorrectly told me I'd reached PCRU (the best you can hope for with CML on Gleevec). We didn't find out till 3 months later at our next appointment.
This December they forgot to run the test entirely. I waited two and a half weeks before calling them for results. When I got a hold of my hematologist's nurse she said that they hadn't drawn the blood for the PCR test. I could come in and have it done when I had time or "just wait till next time".
Are you fucking kidding me? "Next time" is three months away. That'll be six months since my last PCR test.
So I'll be heading in Tuesday morning (tomorrow) for another blood draw so they can run my PCR test.
Tis the season I suppose....
Monday, December 21, 2009
Friday, November 20, 2009
Two Sides, One Coin
A lot of the blogs that I started reading when I was diagnosed don't have many new posts anymore. People's lives return to something close to "normal" or they die. In both cases, they stop posting.
For me things have gotten back to something resembling normal. I've been back at work full time for over 6 months, my side effects have subsided to the point where they're annoying and frustrating but I'm learning to live with them. I still get tired more easily than I used to, my digestive system is unpredictable at best and I'm pretty much always in some sort of discomfort from it, I'm 30 pounds heavier than I was when I was diagnosed and my muscles cramp up quite painfully all the time. All in all, not too bad given what I carry around inside my blood.
The same is not true for all with this cancer however. Over the past year I've corresponded with a woman whose son (roughly my age) was diagnosed with CML and subsequently failed Gleevec. He had a stem cell transplant and had passed his 100 day mark with flying colors.
Then I got an email last week that I will let speak for itself:
My heart goes out to his mother as well as his entire family. It's not fair and it's not right.
For me things have gotten back to something resembling normal. I've been back at work full time for over 6 months, my side effects have subsided to the point where they're annoying and frustrating but I'm learning to live with them. I still get tired more easily than I used to, my digestive system is unpredictable at best and I'm pretty much always in some sort of discomfort from it, I'm 30 pounds heavier than I was when I was diagnosed and my muscles cramp up quite painfully all the time. All in all, not too bad given what I carry around inside my blood.
The same is not true for all with this cancer however. Over the past year I've corresponded with a woman whose son (roughly my age) was diagnosed with CML and subsequently failed Gleevec. He had a stem cell transplant and had passed his 100 day mark with flying colors.
Then I got an email last week that I will let speak for itself:
I am praying you are still doing well on your CML journey. Sadly, I have to tell you that my beloved son, Robert*, passed away on Friday, Nov. 6. Since I last emailed you, the sharp pains in his back turned out to be relapsed leukemia in his spine. Sometime during chemo, the leukemic cells passed through the blood/brain barrier and formed chloromas. In July, he was unable to have a bowel movement for 3 weeks. We went to many doctors and they all told us there was no blockage and keep taking laxatives and painkillers. We took him into the local ER on July 24 and after a CT scan they sent him home with more laxatives. By the next morning, Robert could no longer walk or urinate. We rushed him to the ER in Hackensack where he had his transplant and an MRI showed a leukemic tumor engulfing his spinal cord. He underwent surgery and radiation treatments. He was only able to walk with a walker after that but he was determined that with PT he would walk again. But the pains started again in his back and the scans showed that the tumors had spread to his entire spine and he was radiated again. He even underwent a donor leukocyte infusion (DLI), but there were still signs of white cell abnormalities. Hackensack told us that they were out of options and suggested we head down to MD Anderson in Houston for an experimental drug trial.
We left here on Oct. 11 for Houston and in less than 4 weeks, he was gone. He never got into the trials. When we met with Dr. Cortez, Robert was coughing and we were told it was due to radiation of his neck area. But it turned out to be pneumonia and he was immediately put into the ICU there. He was also given a round of chemo which I questioned since he was so vulnerable at the time. They tell us he had a drug reaction to an antibiotic and he got Steven Johnson Syndrome, actually TENS, as his body blistered over 90% inside and out. He was transferred to a burn unit to dress his skin daily but the disease took everything from him. He was on a breathing tube the final week of his life. He was blinded, unable to speak, no mobility, just nothing. It was a horrific death but he is at peace now, we are sure. He was taken from us way too soon.
God bless you and Wendy. My wish for you is to have many, many more happy NORMAL years. Hopefully, soon there will be a cure for all cancers.
We left here on Oct. 11 for Houston and in less than 4 weeks, he was gone. He never got into the trials. When we met with Dr. Cortez, Robert was coughing and we were told it was due to radiation of his neck area. But it turned out to be pneumonia and he was immediately put into the ICU there. He was also given a round of chemo which I questioned since he was so vulnerable at the time. They tell us he had a drug reaction to an antibiotic and he got Steven Johnson Syndrome, actually TENS, as his body blistered over 90% inside and out. He was transferred to a burn unit to dress his skin daily but the disease took everything from him. He was on a breathing tube the final week of his life. He was blinded, unable to speak, no mobility, just nothing. It was a horrific death but he is at peace now, we are sure. He was taken from us way too soon.
God bless you and Wendy. My wish for you is to have many, many more happy NORMAL years. Hopefully, soon there will be a cure for all cancers.
* I've changed the name at the request of his mother.
My heart goes out to his mother as well as his entire family. It's not fair and it's not right.
Tuesday, October 6, 2009
Are You Pregnant?
I slipped out of work a couple of weeks ago to have a nice quiet lunch at Noah's over a Metro newspaper and enjoy the fabulous September weather we're having. I had just taken my first bite of sandwich when I noticed a woman enter in shorts, a t-shirt, a do rag and no hair anywhere on her face or head. She had a bandage on her arm where I'm assuming a picc line had just been removed or was hidden. She was obviously being treated for cancer.
I felt an immediate kinship with this woman whom I've never met before due to a disease that we had in common. I planned to wait for her to sit down so I could strike up a conversation with her. I was interested how her treatment was going and what kind of cancer she had. I wanted to connect with this person, to tell her good luck, to listen to her vent, and to enjoy a nice lunch with someone else who had cancer. I wanted to let her know that there are other's out there going about their lives, dealing with hardships similar to hers. Most of all, I just wanted to hear her story.
Alas, I never got that far. The more I thought about it, the less appropriate it seemed to approach a stranger in a restaurant, ask them if they had cancer and then ask them questions about it. The risk of putting my foot in my mouth was akin to inquiring if a woman was pregnant. What if the woman didn't have cancer after all? What if the last thing she wanted to do was talk about her treatment or disease with some random stranger? The more I thought about it, the more it seemed best not to approach her.
The feeling that settled over me and prevented me from approaching her was a combination of respect and fear. I did not want to risk causing this woman to focus on her cancer and potentially ruin an otherwise escapist meal. I wanted to respect her privacy despite her appearance making her cancer public and I feared potentially upsetting her.
I have the fortune (depending on your viewpoint) not to have any external signs that I have cancer. I've made it 4 months at my new job without any of my co-workers guessing that I have a medical condition, let alone cancer. I don't hide it (this blog is public and has my real name and picture attached to it), but I don't advertise it or offer information about it either. I find it a relief to shade my cancer in anonymity such that it's not the first thing that comes into someone's mind when we speak. I don't have to second guess people's expectations or evaluations of me, they expect from me what they would expect from a normal person. This woman did not have that luxury. She had no eyebrows and no hair. She was sporting the tell-tale "cancer hat". She couldn't hide her cancer if she wanted to and there was no way for her to get through a day without someone doing a double take as she passed due to her appearance.
But oh how badly I wanted to speak with her! I kept debating until she finally got up and went about her day, ambling off down the sidewalk with her companion. I'm now left with a feeling of loss for never having met this woman and experienced her story.
I would like to believe that people with cancer are in a club and we get some special privileges that others might not. We can broach topics that would be taboo for others because we've been there and done that. Despite the wildly varying treatments and procedures for cancer, we can at least sympathize with what a cancer patient is going through in ways that people who have never been through them cannot.
The reality is that each person deals with this differently. Some guard their privacy fiercely while others broadcast every trial and tribulation to anyone who will listen. You'll never know unless you ask, and this time I felt it best not to ask.
To the stranger at Noah's: I wish you all the luck possible with your treatment. There's someone out there that you don't know hoping that a positive outcome somehow finds you soon.
I felt an immediate kinship with this woman whom I've never met before due to a disease that we had in common. I planned to wait for her to sit down so I could strike up a conversation with her. I was interested how her treatment was going and what kind of cancer she had. I wanted to connect with this person, to tell her good luck, to listen to her vent, and to enjoy a nice lunch with someone else who had cancer. I wanted to let her know that there are other's out there going about their lives, dealing with hardships similar to hers. Most of all, I just wanted to hear her story.
Alas, I never got that far. The more I thought about it, the less appropriate it seemed to approach a stranger in a restaurant, ask them if they had cancer and then ask them questions about it. The risk of putting my foot in my mouth was akin to inquiring if a woman was pregnant. What if the woman didn't have cancer after all? What if the last thing she wanted to do was talk about her treatment or disease with some random stranger? The more I thought about it, the more it seemed best not to approach her.
The feeling that settled over me and prevented me from approaching her was a combination of respect and fear. I did not want to risk causing this woman to focus on her cancer and potentially ruin an otherwise escapist meal. I wanted to respect her privacy despite her appearance making her cancer public and I feared potentially upsetting her.
I have the fortune (depending on your viewpoint) not to have any external signs that I have cancer. I've made it 4 months at my new job without any of my co-workers guessing that I have a medical condition, let alone cancer. I don't hide it (this blog is public and has my real name and picture attached to it), but I don't advertise it or offer information about it either. I find it a relief to shade my cancer in anonymity such that it's not the first thing that comes into someone's mind when we speak. I don't have to second guess people's expectations or evaluations of me, they expect from me what they would expect from a normal person. This woman did not have that luxury. She had no eyebrows and no hair. She was sporting the tell-tale "cancer hat". She couldn't hide her cancer if she wanted to and there was no way for her to get through a day without someone doing a double take as she passed due to her appearance.
But oh how badly I wanted to speak with her! I kept debating until she finally got up and went about her day, ambling off down the sidewalk with her companion. I'm now left with a feeling of loss for never having met this woman and experienced her story.
I would like to believe that people with cancer are in a club and we get some special privileges that others might not. We can broach topics that would be taboo for others because we've been there and done that. Despite the wildly varying treatments and procedures for cancer, we can at least sympathize with what a cancer patient is going through in ways that people who have never been through them cannot.
The reality is that each person deals with this differently. Some guard their privacy fiercely while others broadcast every trial and tribulation to anyone who will listen. You'll never know unless you ask, and this time I felt it best not to ask.
To the stranger at Noah's: I wish you all the luck possible with your treatment. There's someone out there that you don't know hoping that a positive outcome somehow finds you soon.
Saturday, September 5, 2009
Beauty and the Bun
I convinced Wendy to model for me in the backyard. She's really starting to show and I wanted to have some pictures of her in different stages of pregnancy.
Here she is at 24 weeks.
Wendy and our Gleevec baby.
Here she is at 24 weeks.
Wendy and our Gleevec baby.
Wednesday, September 2, 2009
Banal
Wendy and were at Stanford yesterday for my quarterly checkup. We did the usual blood draw and then had a quick "drive-by" visit with the oncologist.
It was no big deal.
It's so strange how normal and banal this has all become. I used to fret for a week beforehand and wait on pins and needles for the PCR results to come back. Now it's just all part of life. I forgot about the appointment until last weekend and I didn't even take the whole day off work. My CBC and metabolic panels came back normal and I'm not worried about getting the PCR results back. I'm just assuming that it'll be a good result.
It's so strange how my attitude has changed in the last 5 months. My mindset is shifting from "this is something that will always be with me and I'll never be free of it" to "I've beaten this and I'm moving on". Thank you Gleevec!
On a distinctly non-mundane note, Wendy has grown quite a large belly! All the tests and ultrasounds show a normal, healthy baby. She's 23 weeks along and going strong! Our house is slowly starting to fill up with baby furniture, clothes, towels, strollers and all the other paraphernalia, brick-a-brack, contraptions and "essential items" that soon-to-be new parents blow their money on.
It's still a little hard to believe that this is really, honestly, finally happening but we're pretty much over the "too scared to get excited" hump and have fallen into giddy excitement and anticipation.
Here's to banality!
It was no big deal.
It's so strange how normal and banal this has all become. I used to fret for a week beforehand and wait on pins and needles for the PCR results to come back. Now it's just all part of life. I forgot about the appointment until last weekend and I didn't even take the whole day off work. My CBC and metabolic panels came back normal and I'm not worried about getting the PCR results back. I'm just assuming that it'll be a good result.
It's so strange how my attitude has changed in the last 5 months. My mindset is shifting from "this is something that will always be with me and I'll never be free of it" to "I've beaten this and I'm moving on". Thank you Gleevec!
On a distinctly non-mundane note, Wendy has grown quite a large belly! All the tests and ultrasounds show a normal, healthy baby. She's 23 weeks along and going strong! Our house is slowly starting to fill up with baby furniture, clothes, towels, strollers and all the other paraphernalia, brick-a-brack, contraptions and "essential items" that soon-to-be new parents blow their money on.
It's still a little hard to believe that this is really, honestly, finally happening but we're pretty much over the "too scared to get excited" hump and have fallen into giddy excitement and anticipation.
Here's to banality!
Thursday, July 30, 2009
I'm In Newsweek!
I hate tooting my own horn but I can't resist this. This blog has been mentioned in an article in Newsweek called "Real Funny People: Young Patients Laugh At Cancer". It's only a "web article" and won't appear in the print magazine, but cool none-the-less.
It's great to see young adult cancer patients getting some exposure in the media. We're often overlooked in favor of the very young or very old.
It's great to see young adult cancer patients getting some exposure in the media. We're often overlooked in favor of the very young or very old.
Northwest Cancer Convention 2009
We recently returned from a wonderful trip to Seattle to visit our "cancer" friend Yanni and her "special friend" John**. She was diagnosed with CML in the fall of 2008, then with Lymphoma in the spring of 2009, and most recently with TIA (basically mini strokes). If anyone is qualified to say "I'm fucked" it's her.
We've gotten to know each other quite well over email, instant messaging and a brief meet up in San Francisco last winter. She's an extraordinary individual with the spirit of a fighter. She's always a delight to talk with, even when things are going poorly for her (which is pretty much the entire time I've known her).
We were treated by our gracious hosts to 3 fabulous days of pacific northwest culture and scenery. The highlight of our trip was something very simple but very special. On Friday we had a group lunch with 2 other individuals who also had CML. At one table, in the suburbs of Seattle, sat 4 cancer survivors. Each shared the common thread of cancer and yet each had a unique story.
Clockwise from front: Marissa, Yanni, Tyler, Hans,
Han's son, Han's mom, Matt, Wendy.
Tyler recently underwent a bone marrow transplant and is doing excellent. His friend Hans plays on the same soccer team and was diagnosed mere months after Tyler. Hans has failed Gleevec and is now on Sprycel. Yanni has been diagnosed with more illnesses than should be present in the population of a small town. And of course, you know Wendy and I. (For the record Marissa raised money with Team In Training and ran the Seattle Half Marathon. Thanks Marissa!)
We enjoyed a long lunch sharing stories about bone marrow biopsies, radiation, chemo-therapy, nurses, needles and doctors. We also talked about death and those we've lost to cancer. Much of the conversation was macabre, frank, open and blunt. It's so refreshing to be able to let down your guard, tell it like it is and not worry about how people will react or whether you'll make them uncomfortable. We joked that the waitress probably didn't even know what was going on. Even though the topics of discussion were heavy and necessarily dark you'd never have known by the laughter and smiles all around the table. After all, we're still here.
On Saturday we were treated to a whirl-wind tour of Washington. We did a little hiking around Mt. Rainier, drove out through Yakima and visited Leavenworth. Washington is indeed a beautiful place.
Matt and Wendy at Shadow Lake
in Mt. Ranier National Park.
We'd like to thank Yanni, John and Ryan for showing us such a wonderful time and being such gracious hosts. My toast to Yanni before we left: "I'm sorry I met you, but I'm glad I know you." In other words, if we didn't have cancer we never would have met, but I'm glad to have found such a good friend.
** Yanni could supply enough material for a reality show and soap opera. This is an inside joke that no one but Yanni, her family and John will get (or the paramedics in Snoqualmie, Washington) but I can't resist putting something up about it. Maybe in time she'll let me share the story of the paramedic visit to her house on Sunday the weekend we were there. You won't be disappointed.
We've gotten to know each other quite well over email, instant messaging and a brief meet up in San Francisco last winter. She's an extraordinary individual with the spirit of a fighter. She's always a delight to talk with, even when things are going poorly for her (which is pretty much the entire time I've known her).
We were treated by our gracious hosts to 3 fabulous days of pacific northwest culture and scenery. The highlight of our trip was something very simple but very special. On Friday we had a group lunch with 2 other individuals who also had CML. At one table, in the suburbs of Seattle, sat 4 cancer survivors. Each shared the common thread of cancer and yet each had a unique story.
Clockwise from front: Marissa, Yanni, Tyler, Hans,
Han's son, Han's mom, Matt, Wendy.
Tyler recently underwent a bone marrow transplant and is doing excellent. His friend Hans plays on the same soccer team and was diagnosed mere months after Tyler. Hans has failed Gleevec and is now on Sprycel. Yanni has been diagnosed with more illnesses than should be present in the population of a small town. And of course, you know Wendy and I. (For the record Marissa raised money with Team In Training and ran the Seattle Half Marathon. Thanks Marissa!)
We enjoyed a long lunch sharing stories about bone marrow biopsies, radiation, chemo-therapy, nurses, needles and doctors. We also talked about death and those we've lost to cancer. Much of the conversation was macabre, frank, open and blunt. It's so refreshing to be able to let down your guard, tell it like it is and not worry about how people will react or whether you'll make them uncomfortable. We joked that the waitress probably didn't even know what was going on. Even though the topics of discussion were heavy and necessarily dark you'd never have known by the laughter and smiles all around the table. After all, we're still here.
On Saturday we were treated to a whirl-wind tour of Washington. We did a little hiking around Mt. Rainier, drove out through Yakima and visited Leavenworth. Washington is indeed a beautiful place.
Matt and Wendy at Shadow Lake
in Mt. Ranier National Park.
We'd like to thank Yanni, John and Ryan for showing us such a wonderful time and being such gracious hosts. My toast to Yanni before we left: "I'm sorry I met you, but I'm glad I know you." In other words, if we didn't have cancer we never would have met, but I'm glad to have found such a good friend.
** Yanni could supply enough material for a reality show and soap opera. This is an inside joke that no one but Yanni, her family and John will get (or the paramedics in Snoqualmie, Washington) but I can't resist putting something up about it. Maybe in time she'll let me share the story of the paramedic visit to her house on Sunday the weekend we were there. You won't be disappointed.
Monday, July 13, 2009
The Difference A Year Makes
Wendy and I made the trip up to Lake Alamanor for the Fourth of July holiday weekend again this year to go camping with my family. Last year I had the unfortunate duty of informing my family that I had been diagnosed with cancer. After breaking the news last year I said that my goal was to get together again the next year for "Remission Party".
While I'll never get to have a remission party, we had the next best thing. I'm doing fabulously on Gleevec and my PCR results have come back twice in a row as "barely detectable". I'm not sure if this qualifies as PCRU (no detectable leukemia cells) but I'll take it. In addition to that I'm really enjoying my new job even though the demands are much higher than my previous position. I've finally beaten the remaining causes of my fatigue into submission and have almost as much energy as I did before I was diagnosed. I have a ways to go before I'm back in shape again, but I've got the energy to actually attempt getting into shape again.
Friday night we all gathered in the same campsite we had last year and sat around the exact same table where 365 days earlier I'd told them all I had cancer. This year I started out the conversation exactly the same:
"Anyone have any announcements they'd like to make?"
There were a couple of uncomfortable laughs and a couple jesting remarks about that "not being cool." But I was serious. I had news to share this year almost as momentus as the news last year. And given the news last year, perhaps more momentus.
Wendy is due December 31.
After 2 years of trying, cancer, 3 miscarriages and 4 months of being told we would not be able to have children in the "normal way" we're going to be parents. Wendy is 14 weeks pregnant as of July 4th and so far (knock on wood) the baby is growing, healthy, and progressing perfectly. We've had 5 ultrasounds, 3 dopplers and a CVS test in those 14 weeks. We're afraid to get too excited for fear of having this ripped out from under us again, but with every passing week and every visit where the heart is still beating we allow ourselves to get a little more excited.
Recently we've gotten a little giddy walking through the baby section at Target and shopping for maternity clothes to fit Wendy's burgeoning belly (she's actually starting to show a little bit!). We cherish every "morning sick" moment, every emotional outburst and every sleepy afternoon. We feel so fortunate to finally have a pregnancy that might make it.
So what difference does a year make? In our case, it's made all the difference. We can't wait till the next Fourth of July, where hopefully, we'll be celebrating with our first child.
While I'll never get to have a remission party, we had the next best thing. I'm doing fabulously on Gleevec and my PCR results have come back twice in a row as "barely detectable". I'm not sure if this qualifies as PCRU (no detectable leukemia cells) but I'll take it. In addition to that I'm really enjoying my new job even though the demands are much higher than my previous position. I've finally beaten the remaining causes of my fatigue into submission and have almost as much energy as I did before I was diagnosed. I have a ways to go before I'm back in shape again, but I've got the energy to actually attempt getting into shape again.
Friday night we all gathered in the same campsite we had last year and sat around the exact same table where 365 days earlier I'd told them all I had cancer. This year I started out the conversation exactly the same:
"Anyone have any announcements they'd like to make?"
There were a couple of uncomfortable laughs and a couple jesting remarks about that "not being cool." But I was serious. I had news to share this year almost as momentus as the news last year. And given the news last year, perhaps more momentus.
Wendy is due December 31.
After 2 years of trying, cancer, 3 miscarriages and 4 months of being told we would not be able to have children in the "normal way" we're going to be parents. Wendy is 14 weeks pregnant as of July 4th and so far (knock on wood) the baby is growing, healthy, and progressing perfectly. We've had 5 ultrasounds, 3 dopplers and a CVS test in those 14 weeks. We're afraid to get too excited for fear of having this ripped out from under us again, but with every passing week and every visit where the heart is still beating we allow ourselves to get a little more excited.
Recently we've gotten a little giddy walking through the baby section at Target and shopping for maternity clothes to fit Wendy's burgeoning belly (she's actually starting to show a little bit!). We cherish every "morning sick" moment, every emotional outburst and every sleepy afternoon. We feel so fortunate to finally have a pregnancy that might make it.
So what difference does a year make? In our case, it's made all the difference. We can't wait till the next Fourth of July, where hopefully, we'll be celebrating with our first child.
Wednesday, June 3, 2009
Cancer Will Not Take This From Me
Having special health needs like cancer complicates decisions like deciding whether or not to change jobs. Will the new job understand that you'll need extra time for medical appointments? Will they be able to accommodate dips in health and stamina? Will health coverage transfer seamlessly?
Recently, a great career opportunity dropped into my lap out of nowhere. The timing could have been better. I was unsure of whether or how quickly the sleeping remedies would work. I was having trouble lasting a full work day let alone a full work week and even when I was working I was certainly not at my full "operating capacity".
I could play it safe and stay where I was, with a good deal of history, support and understanding for my current condition but with no real opportunity for advancement or growth, or I could change jobs where much more would be expected of me but the opportunities for growth and advancement are very good.
It took a good deal of contemplation but I resolved that cancer will not take this away from me. I will not let this disease rob me of such an opportunity. So I decided to take a risk and accepted a new position as a lead developer at a small online auction company.
It's been almost 3 weeks since I started my new job and I'm loving it. In addition to being a good career move I've discovered a few positive aspects that I hadn't anticipated:
And it's one thing that I did not let cancer take away from me.
Recently, a great career opportunity dropped into my lap out of nowhere. The timing could have been better. I was unsure of whether or how quickly the sleeping remedies would work. I was having trouble lasting a full work day let alone a full work week and even when I was working I was certainly not at my full "operating capacity".
I could play it safe and stay where I was, with a good deal of history, support and understanding for my current condition but with no real opportunity for advancement or growth, or I could change jobs where much more would be expected of me but the opportunities for growth and advancement are very good.
It took a good deal of contemplation but I resolved that cancer will not take this away from me. I will not let this disease rob me of such an opportunity. So I decided to take a risk and accepted a new position as a lead developer at a small online auction company.
It's been almost 3 weeks since I started my new job and I'm loving it. In addition to being a good career move I've discovered a few positive aspects that I hadn't anticipated:
- No one but my immediate boss knows I have cancer. I worried that people would not understand my condition and I wouldn't be cut any slack. However, it's turned out that not being cut any slack has caused me to expect more from myself. I think I was letting myself get a little lax by allowing those around me to set my expectations for me. Not having that excuse has improved my drive, my stamina and my motivation.
- Since no one knows I have cancer, work is now a place where I can escape from awkward questions and interactions. People don't worry about what they say around me and vice versa. This is one time where not having any outward signs of leukemia definitely works to my advantage.
- I feel more normal because people expect me to be normal. This is slightly contrary to my first point since I'm essentially still letting others set my expectations for me, this is just a positive spin on the same theme.
And it's one thing that I did not let cancer take away from me.
Wednesday, May 20, 2009
Passive Solar Collection
Who would have thought 30 minutes of sun a day could make such a dramatic difference? 3 weeks ago I hadn't slept through a night, been to bed before 5 o'clock in the morning, had any energy, or felt anything other than hungover for months. I think my brain had actually slowed to a crawl.
After 1 week of 30 minutes of sun every morning and the help of a CPAP machine, I now get up without any real problem at 7 a.m. every morning and I'm at work before 9. I have tons of energy, I've started exercising again and I'm starting to feel like I did before I was diagnosed with cancer.
Yesterday I got a postcard in the mail that had two obese men in speedos on the front laying out in the sun. It was titled "Passive Solar Collectors". My mom saw it at a stationary store and thought of me. Thanks for the mostly naked fat men mom... :-)
After 1 week of 30 minutes of sun every morning and the help of a CPAP machine, I now get up without any real problem at 7 a.m. every morning and I'm at work before 9. I have tons of energy, I've started exercising again and I'm starting to feel like I did before I was diagnosed with cancer.
Yesterday I got a postcard in the mail that had two obese men in speedos on the front laying out in the sun. It was titled "Passive Solar Collectors". My mom saw it at a stationary store and thought of me. Thanks for the mostly naked fat men mom... :-)
Tuesday, April 21, 2009
Cans On A Fence
I've been tracking down and eliminating potential causes for my ongoing fatigue. After my last two glucose readings came in low from tests at Stanford I saw my GP and he agreed to run a glucose tolerance test as well as check my AM and PM cortisol levels. Both checked out within normal ranges, which means I'm not hypoglycemic (the opposite of diabetic). At least I won't have to watch what I eat like a Hollywood starlet.
The tolerance test turned out to be located somewhere just south of "fun". I fasted for 12 hours then drank a bottle of nasty sugar water (who knew sugar water could taste nasty?). Then I proceeded to sit in the doctor's office for 5 hours getting my blood drawn every hour. Luckily my veins held up quite nicely and they didn't have to stick me anywhere other than my arms. It turns out I would make an excellent intravenous drug addict!
My sleep quality and schedule is another potential cause for the ongoing fatigue. Since I was diagnosed I haven't been sleeping regularly or well. It has gotten progressively worse and for the past couple of months I've been unable to fall asleep before 5 or 6 AM. Various drugs were of no help and my pathetic attempt to adjust my schedule fizzled out after day four of trying to get up an hour earlier everyday. I started on a Monday and by Thursday was running on a grand total of 7 hours of sleep. So I gave up.
I made an appointment with Dr. Angela Anagnos who specializes in sleep disorders. I completed a sleep study 2 weeks ago that had to be scheduled during the day in order for me to actually sleep during the study. I showed up at 9am and was ushered into a room with a bed (that's the actual room and bed where I slept) where dozens of wires were attached to my scalp, face, chest, arms and legs with what seemed like the kind of paste you used to eat in grade school. Two sensors were stuck up my nose (very similar to a nasal oxygen tube) and two bands were strapped around my chest. The "hook-up" took about an hour to complete after which I promptly passed out and slept till 4pm.
During the followup the next week I learned that I had some "pre-seizure" brain activity (though no actual seizures, which I'm guessing is normal since she didn't seem concerned about it), a wildly ranging heartbeat (anywhere from 30bpm to 190bpm), mild snoring, and mild to moderate sleep apnea. None of these seemed to concern her very much. One that did was the amount of deep sleep that I got. According to her, most people are in deep sleep about 20% of the time. I got .2% deep sleep (the period is not a typo, that's less than one percent).
So I'm scheduled to go back in this Friday from 9am to 4pm again for another study where I'll be hooked up to a CPAP machine to determine whether "fixing" the sleep apnea will allow me to get more "deep sleep".
On a side note, the followup was absolute fascinating. All the data collected from the sleep study is distilled into graphs and charts of all kinds. It was great fun to go over them with Dr. Anagnos and see my sleep habits distilled into the various diagrams and charts. Did I mention I love numbers?
If all of this sounds dull and boring, you're absolutely right. In fact, if you've made it this far into this post I applaud you for your diligence. No one gives a rat's ass about any of this detail except me.
I have a reason for posting this though and it has to do with yet another lesson I've learned from cancer: It's okay to try and take care of yourself. (If you watch Southpark at all, this is the point in show where one of the boys says "You know, I learned something today".) Before I was diagnosed I'll estimate that I saw a doctor about 10 times in my entire adult life for things other than a required physical or checkup. Before cancer I would never have even entertained the idea of requesting a glucose test or a sleep study. I would have thought I was just being a hypochondriac and that if a doctor didn't tell me to do it, it must not be necessary.
Now I'm chasing down symptoms and causes for fatigue and knocking them off one by one like cans on a fence. And I don't give a shit if someone thinks I'm a hypochondriac or that I'm a "difficult patient" or complainer (monikers people with chronic conditions are sometimes tagged with). If there is something out there that might help me to not feel so tired, I'm going to find it. If I have to go through 20 tests that show nothing before I find one that does, so be it.
It's okay to try and take care of myself.
The tolerance test turned out to be located somewhere just south of "fun". I fasted for 12 hours then drank a bottle of nasty sugar water (who knew sugar water could taste nasty?). Then I proceeded to sit in the doctor's office for 5 hours getting my blood drawn every hour. Luckily my veins held up quite nicely and they didn't have to stick me anywhere other than my arms. It turns out I would make an excellent intravenous drug addict!
My sleep quality and schedule is another potential cause for the ongoing fatigue. Since I was diagnosed I haven't been sleeping regularly or well. It has gotten progressively worse and for the past couple of months I've been unable to fall asleep before 5 or 6 AM. Various drugs were of no help and my pathetic attempt to adjust my schedule fizzled out after day four of trying to get up an hour earlier everyday. I started on a Monday and by Thursday was running on a grand total of 7 hours of sleep. So I gave up.
I made an appointment with Dr. Angela Anagnos who specializes in sleep disorders. I completed a sleep study 2 weeks ago that had to be scheduled during the day in order for me to actually sleep during the study. I showed up at 9am and was ushered into a room with a bed (that's the actual room and bed where I slept) where dozens of wires were attached to my scalp, face, chest, arms and legs with what seemed like the kind of paste you used to eat in grade school. Two sensors were stuck up my nose (very similar to a nasal oxygen tube) and two bands were strapped around my chest. The "hook-up" took about an hour to complete after which I promptly passed out and slept till 4pm.
During the followup the next week I learned that I had some "pre-seizure" brain activity (though no actual seizures, which I'm guessing is normal since she didn't seem concerned about it), a wildly ranging heartbeat (anywhere from 30bpm to 190bpm), mild snoring, and mild to moderate sleep apnea. None of these seemed to concern her very much. One that did was the amount of deep sleep that I got. According to her, most people are in deep sleep about 20% of the time. I got .2% deep sleep (the period is not a typo, that's less than one percent).
So I'm scheduled to go back in this Friday from 9am to 4pm again for another study where I'll be hooked up to a CPAP machine to determine whether "fixing" the sleep apnea will allow me to get more "deep sleep".
On a side note, the followup was absolute fascinating. All the data collected from the sleep study is distilled into graphs and charts of all kinds. It was great fun to go over them with Dr. Anagnos and see my sleep habits distilled into the various diagrams and charts. Did I mention I love numbers?
If all of this sounds dull and boring, you're absolutely right. In fact, if you've made it this far into this post I applaud you for your diligence. No one gives a rat's ass about any of this detail except me.
I have a reason for posting this though and it has to do with yet another lesson I've learned from cancer: It's okay to try and take care of yourself. (If you watch Southpark at all, this is the point in show where one of the boys says "You know, I learned something today".) Before I was diagnosed I'll estimate that I saw a doctor about 10 times in my entire adult life for things other than a required physical or checkup. Before cancer I would never have even entertained the idea of requesting a glucose test or a sleep study. I would have thought I was just being a hypochondriac and that if a doctor didn't tell me to do it, it must not be necessary.
Now I'm chasing down symptoms and causes for fatigue and knocking them off one by one like cans on a fence. And I don't give a shit if someone thinks I'm a hypochondriac or that I'm a "difficult patient" or complainer (monikers people with chronic conditions are sometimes tagged with). If there is something out there that might help me to not feel so tired, I'm going to find it. If I have to go through 20 tests that show nothing before I find one that does, so be it.
It's okay to try and take care of myself.
Wednesday, April 1, 2009
Charity
Feel free to officially break out the champagne (or sparkling wine) to celebrate. I received a copy of my PCR results from the March 3 visit to Stanford and it says (and I quote) ">3 log reduction". And this time it says "CML" too. I checked with Dr. Coutre and he concurs that this means I've achieved a "major molecular response".
This means that there has been at least a 3 log reduction in the number of leukemic cells in my body but that they are still detectable. The next (and last level) of response would be a "complete molecular response" which means that no leukemic cells were detectable with a PCR test (you might also hear this called "PCRU" or "PCR Undetectable"). Obviously this has nothing to do with charity but I don't need an excuse to pass along good news... so there.
In other news Wendy and I have been trying to become more involved with the trainees for this season of Team In Training. We attended a pool tournament fund raiser where I took 3rd place! We had a great afternoon talking with Mark who put on the event. My personal thanks to Shoreline Billiards in Mountain View, CA for their generous donation of 5 tables. This Saturday we're attending the Team In Training "Honoree Picnic". This is an opportunity for the trainees to get to know the honorees and mingle. It should be fun.
If you're within range of the venerable KGO Talk Radio (my favorite talk radio station along with NPR) they are having their annual Leukemia and Lymphoma Cure-A-Thon April 3 and 4. All the money goes to benefit the Leukemia and Lymphoma Society. Consider listening in and maybe donating a little something.
Bring on Spring!
This means that there has been at least a 3 log reduction in the number of leukemic cells in my body but that they are still detectable. The next (and last level) of response would be a "complete molecular response" which means that no leukemic cells were detectable with a PCR test (you might also hear this called "PCRU" or "PCR Undetectable"). Obviously this has nothing to do with charity but I don't need an excuse to pass along good news... so there.
In other news Wendy and I have been trying to become more involved with the trainees for this season of Team In Training. We attended a pool tournament fund raiser where I took 3rd place! We had a great afternoon talking with Mark who put on the event. My personal thanks to Shoreline Billiards in Mountain View, CA for their generous donation of 5 tables. This Saturday we're attending the Team In Training "Honoree Picnic". This is an opportunity for the trainees to get to know the honorees and mingle. It should be fun.
If you're within range of the venerable KGO Talk Radio (my favorite talk radio station along with NPR) they are having their annual Leukemia and Lymphoma Cure-A-Thon April 3 and 4. All the money goes to benefit the Leukemia and Lymphoma Society. Consider listening in and maybe donating a little something.
Bring on Spring!
Friday, March 13, 2009
Boo Yah!
My doctor left me a message today. He didn't leave exact numbers, but said my PCR test results came back with a greater than 3 log reduction and that leukemic cells were "barely detectable".
Can I get a "hell yeah!"?
I'm reserving a full on celebration until I can get a copy of the results and see for myself, but this is EXCELLENT news.
I went out and bought a bottle of wine to share with Wendy. We'll be toasting to our good fortune tonight!
Can I get a "hell yeah!"?
I'm reserving a full on celebration until I can get a copy of the results and see for myself, but this is EXCELLENT news.
I went out and bought a bottle of wine to share with Wendy. We'll be toasting to our good fortune tonight!
Thursday, March 12, 2009
Public Speaking
I had the privilege of sharing my cancer story with the South Bay Team In Training group tonight at Los Gatos High School. I am an "honoree" this season. Honorees help connect the Team In Training participants to the cause that they are supporting. There are a handful of us that work with the South Bay group for the spring season.
Tonight after they finished running we gathered in front of the school and I spent about 5 minutes explaining how they had helped change the way that my cancer is treated. Before Gleevec I would have had a 4-5 year life expectancy and gone through chemo and radiation, along with a bone marrow transplant. With Gleevec I take a pill once a day. Though there are side effects that are bothersome, they are nothing in comparison to what my life would be like without it.
I'm not a terribly good speaker and I was actually a little nervous so I hope that my thank you to them came across as sincere and they have some small insight into how Team In Training has directly affected my life.
I really enjoy hanging out with the participants and leaders of Team In Training. Everyone is so enthusiastic and supportive. I can't wait till this fall when I attempt to actually run with them!
Tonight after they finished running we gathered in front of the school and I spent about 5 minutes explaining how they had helped change the way that my cancer is treated. Before Gleevec I would have had a 4-5 year life expectancy and gone through chemo and radiation, along with a bone marrow transplant. With Gleevec I take a pill once a day. Though there are side effects that are bothersome, they are nothing in comparison to what my life would be like without it.
I'm not a terribly good speaker and I was actually a little nervous so I hope that my thank you to them came across as sincere and they have some small insight into how Team In Training has directly affected my life.
I really enjoy hanging out with the participants and leaders of Team In Training. Everyone is so enthusiastic and supportive. I can't wait till this fall when I attempt to actually run with them!
Tuesday, March 3, 2009
Ominous Violins
You know how in movies and television a subtle, yet ominous violin foreshadows some critical turn in the plot? For instance, two girls are talking jovially on the steps of their college dorm about classes and homework when the conversation turns to the party last Friday night. In the background a soft, low violin begins to play a solitary, wavering note as the girl on the left explains that she had sex at that party and that she's pregnant now.
Violins played today during my quarterly visit to Stanford. Our chat with the med student that precedes the visit with the actual doctor went very well. He gathered information about the medications I'm taking, the current side effects and how I'm managing them.
Then my regular doctor comes in and looks a little rushed (it was probably 5pm by this time, our original appointment was at 3pm). We ask a couple of questions about where exactly I am in treatment, how things are going, etc. We get a little hung up on whether I'm considered to have had a complete cytogenetic response as I reported over Christmas.
(Violins begin playing....)
He says you really need a BMB to determine if you've achieved a complete cytogenetic response. We had always been under the impression that a clean FISH test was the same thing. Then (and here's the kicker) it doesn't really matter because the FISH test from December was botched. The numbers are meaningless.
Really??
Somewhere in the "chain of evidence" that lab orders and samples go through when they leave my arm, get processed at the lab and come back, the test was changed from CML markers to CLL markers. So it was a wasted test, though you'll be happy to know that I tested negative for CLL. (Did the sarcasm come through in that last statement? Good.) The doctor didn't figure this out till he looked at the result today during our visit. When he originally saw them back in December, he didn't get past the part of the report where it said "Negative".
At this point Wendy and I are a little dazed; stuck somewhere between magnanimity, malevolence, and dumbfounderment. People make mistakes, they're human. But this was really two mistakes: the test was botched and the fact that it was botched wasn't caught. How could something like this have happened?
The bottom line is that I haven't had anything but peripheral blood tests (CBC) since July of 2008. So we have absolutely no idea what kind of progress I've made at the cytogenetic (FISH) or molecular (PCR) level over the past 8 months. I might be in "remission", I might not. We don't know.
Remember the violin? It's still playing actually. We're not quite through the plot turns here.
My first PCR test was in June of 2008, it showed 5.45% leukemic cells. The second test was done in July and it reported .45. 5.45 => .45 is a one log reduction. As the doctor was explaining what "good" data we had and what we expect to see from today's PCR test he mentioned that it would be good to get from my current .45 log reduction to a 2 log reduction.
Wait, what?
It turns out that we had been misinterpreting the results from my past PCR tests. The first test reports the percent of leukemic cells, that would be 5.45%. All tests after that report the log reduction, NOT the percentage of leukemic cells. So the .45 on the test from July means that I've achieved a .45 log reduction, not that I have .45% leukemic cells.
So this morning I was here:
The bottom line is that we didn't get any bad news. We just had all the good news we'd been celebrating for the last few months completely invalidated. I feel like we're back to square 1 in a way. I had felt like we were solidly on our way to remission and a return to normal. Maybe we still are, but now I have no fucking clue again. It'll be a long 2 weeks waiting for those test results.
Violins played today during my quarterly visit to Stanford. Our chat with the med student that precedes the visit with the actual doctor went very well. He gathered information about the medications I'm taking, the current side effects and how I'm managing them.
Then my regular doctor comes in and looks a little rushed (it was probably 5pm by this time, our original appointment was at 3pm). We ask a couple of questions about where exactly I am in treatment, how things are going, etc. We get a little hung up on whether I'm considered to have had a complete cytogenetic response as I reported over Christmas.
(Violins begin playing....)
He says you really need a BMB to determine if you've achieved a complete cytogenetic response. We had always been under the impression that a clean FISH test was the same thing. Then (and here's the kicker) it doesn't really matter because the FISH test from December was botched. The numbers are meaningless.
Really??
Somewhere in the "chain of evidence" that lab orders and samples go through when they leave my arm, get processed at the lab and come back, the test was changed from CML markers to CLL markers. So it was a wasted test, though you'll be happy to know that I tested negative for CLL. (Did the sarcasm come through in that last statement? Good.) The doctor didn't figure this out till he looked at the result today during our visit. When he originally saw them back in December, he didn't get past the part of the report where it said "Negative".
At this point Wendy and I are a little dazed; stuck somewhere between magnanimity, malevolence, and dumbfounderment. People make mistakes, they're human. But this was really two mistakes: the test was botched and the fact that it was botched wasn't caught. How could something like this have happened?
The bottom line is that I haven't had anything but peripheral blood tests (CBC) since July of 2008. So we have absolutely no idea what kind of progress I've made at the cytogenetic (FISH) or molecular (PCR) level over the past 8 months. I might be in "remission", I might not. We don't know.
Remember the violin? It's still playing actually. We're not quite through the plot turns here.
My first PCR test was in June of 2008, it showed 5.45% leukemic cells. The second test was done in July and it reported .45. 5.45 => .45 is a one log reduction. As the doctor was explaining what "good" data we had and what we expect to see from today's PCR test he mentioned that it would be good to get from my current .45 log reduction to a 2 log reduction.
Wait, what?
It turns out that we had been misinterpreting the results from my past PCR tests. The first test reports the percent of leukemic cells, that would be 5.45%. All tests after that report the log reduction, NOT the percentage of leukemic cells. So the .45 on the test from July means that I've achieved a .45 log reduction, not that I have .45% leukemic cells.
So this morning I was here:
- Clean peripheral blood.
- 2 log reduction.
- Negative FISH test (complete cytogenetic response).
- Essentially in remission.
- Hoping for today's PCR test to show that all important last log reduction.
- Happy and skippy.
- Clean peripheral blood.
- .45 log reduction.
- Most recent data from 8 months ago.
- Wondering if anyone got the license plate of the truck that just drove over me.
The bottom line is that we didn't get any bad news. We just had all the good news we'd been celebrating for the last few months completely invalidated. I feel like we're back to square 1 in a way. I had felt like we were solidly on our way to remission and a return to normal. Maybe we still are, but now I have no fucking clue again. It'll be a long 2 weeks waiting for those test results.
Tuesday, February 24, 2009
The Best Laid Plans of Mice and Men
When Wendy and I decided to to start trying to have children, we had a very specific plan. It went something like this:
Now we just want a child. We don't care when it's birthday is, we don't care how the birth coincides with Wendy's work schedule and he or she will just have to make due if their birthday is close to Christmas or New Years. The only thing we were right about was getting a dream vacation out of the way before diving into all this. And I think I'd even go back and give that up if we could just get a pregnancy to stick.
As they say, "10 fingers and 10 toes", that's all we're asking for now.
For the curious, the title comes from the Robert Burns poem "To A Mouse". Though it's not exact, it's often quoted as "The best laid plans of mice and men often go awry".
- Visit Europe first (done, May/June 2007).
- Time birth such that Wendy could take at least 6 months off of work.
- Time birth to occur in October (our families have an unusually high number of births in October, we wanted to continue the trend).
- Avoid a Christmas or New Years birth.
Now we just want a child. We don't care when it's birthday is, we don't care how the birth coincides with Wendy's work schedule and he or she will just have to make due if their birthday is close to Christmas or New Years. The only thing we were right about was getting a dream vacation out of the way before diving into all this. And I think I'd even go back and give that up if we could just get a pregnancy to stick.
As they say, "10 fingers and 10 toes", that's all we're asking for now.
For the curious, the title comes from the Robert Burns poem "To A Mouse". Though it's not exact, it's often quoted as "The best laid plans of mice and men often go awry".
Friday, February 20, 2009
New Swag!
I created a couple of new t-shirts this month for Wendy, myself and a friend. You can see the new collection here. I wanted a shirt with my blog title in it and also wanted to give a shirt to Yanni when she visited. Her's is humorously R rated, so children beware. It's safe for work but not safe for those that are underage. (I've sprinkled more colorful language around this blog before, but just in case....)
Just so you know, I've put a $4 markup on each t-shirt. All proceeds will go directly to South Bay Team In Training.
I'm currently looking for a service that will print license plate frames that say "Save A Life" on top and "marrow.org" on the bottom. I'd love to stop advertising the dealership where I bought my truck and put that space to good use. More later when I get that worked out.
(As a side note, I'm done with cafepress, the service I was using to make t-shirts. They have some bogus restrictions that I couldn't get around without paying them money. I found another service called Printfection that's a lot more lenient and doesn't want to appropriate my hard earned money for no apparent reason.)
Just so you know, I've put a $4 markup on each t-shirt. All proceeds will go directly to South Bay Team In Training.
I'm currently looking for a service that will print license plate frames that say "Save A Life" on top and "marrow.org" on the bottom. I'd love to stop advertising the dealership where I bought my truck and put that space to good use. More later when I get that worked out.
(As a side note, I'm done with cafepress, the service I was using to make t-shirts. They have some bogus restrictions that I couldn't get around without paying them money. I found another service called Printfection that's a lot more lenient and doesn't want to appropriate my hard earned money for no apparent reason.)
Yanni
I've mentioned Yanni here a couple of times. She lives near Seattle and was diagnosed with CML in the fall of 2008. Unfortunately she was diagnosed in the advanced stage of the disease. Gleevec didn't work for her and the leukemic cells invaded her central nervous system (basically her spine and brain). I probably don't need to spell out how bad that is.
She's subsequently been through about half a dozen rounds of chemotherapy, a handful of thoracentesis procedures (to drain cancerous fluid from around her lung cavity) and more ups and downs than you can shake a stick at (although I'm sure she's tried, she's rather feisty). Currently, she's going through one more round of chemo in the hopes of avoiding a transplant or drug trial and going back on one of Gleevec, Tasigna or Sprycel. I deeply hope that she's able to go back on one of these drugs instead of heading down the transplant route.
We've gotten to know each other via email and instant messenger over the last couple of months. She's incredibly nice and thoroughly undeserving of her current predicament. This last weekend she was in good enough health to fly down to meet Wendy and I. We stayed overnight in Sausalito at the Casa Madrona hotel where we got to know each other a little better over dinner on Sunday night. We talked about treatments, about the future, and about how much this sucks. Monday morning we went traipsing around Sausalito checking out a few shops and having breakfast.
Unfortunately, I wasn't feeling very well at all on Monday, so Wendy and I went home in the early afternoon (I slept the entire way). It was a great visit and I'm very glad to have met her. I wish her the best in the coming months as the direction of her treatment becomes more clear.
As for me, I'm still plugging along. The nausea has come back in moderation and I feel like I'm getting progressively more tired. It's to the point now where I can't make it through a full work week. In fact this week I went to sleep early Thursday morning and woke up Friday late afternoon - almost 2 days. I'm working on getting more exercise in the hopes that the fatigue is related to that. We'll find how my blood is doing in a couple of weeks during our quarterly visit to Stanford.
She's subsequently been through about half a dozen rounds of chemotherapy, a handful of thoracentesis procedures (to drain cancerous fluid from around her lung cavity) and more ups and downs than you can shake a stick at (although I'm sure she's tried, she's rather feisty). Currently, she's going through one more round of chemo in the hopes of avoiding a transplant or drug trial and going back on one of Gleevec, Tasigna or Sprycel. I deeply hope that she's able to go back on one of these drugs instead of heading down the transplant route.
We've gotten to know each other via email and instant messenger over the last couple of months. She's incredibly nice and thoroughly undeserving of her current predicament. This last weekend she was in good enough health to fly down to meet Wendy and I. We stayed overnight in Sausalito at the Casa Madrona hotel where we got to know each other a little better over dinner on Sunday night. We talked about treatments, about the future, and about how much this sucks. Monday morning we went traipsing around Sausalito checking out a few shops and having breakfast.
Unfortunately, I wasn't feeling very well at all on Monday, so Wendy and I went home in the early afternoon (I slept the entire way). It was a great visit and I'm very glad to have met her. I wish her the best in the coming months as the direction of her treatment becomes more clear.
As for me, I'm still plugging along. The nausea has come back in moderation and I feel like I'm getting progressively more tired. It's to the point now where I can't make it through a full work week. In fact this week I went to sleep early Thursday morning and woke up Friday late afternoon - almost 2 days. I'm working on getting more exercise in the hopes that the fatigue is related to that. We'll find how my blood is doing in a couple of weeks during our quarterly visit to Stanford.
Monday, January 26, 2009
Happy Birthday Cancer Dog
January is Leu's birthday. He is one this month. I made cupcakes for Wendy (who was also born in January) and we decided to let Leu have one.
We learned 2 things doing this:
The first 2 weeks of work have been pretty good. Trying to figure out what's happened in the last 5 months has been slow going but I'm starting to get back into the swing of things. My co-workers threw me a "Welcome Back" lunch the second week. I was very touched.
My fatigue level is much better now than even a month ago. If I can get up and get going I do pretty good all day. As soon as I relax though, I crash. I slept all but 4 hours yesterday. Leu kept me company for some of those.
Wendy basically woke me up for meals, after which I would promptly fall right back asleep.
In the interest of full disclosure we haven't made any "tangible" progress on the baby front. We lost another very early pregnancy over the Christmas holiday. It lasted just long enough for us to get excited about it. That made the holiday a little bittersweet, celebrating the progress my treatment has made while trying not to feel kicked in the teeth by the loss of another pregnancy. We've still got our chins up and we're hopeful though. It'll happen.
My next appointment at Stanford will be March 3. Till then, it should be steady as she goes....
We learned 2 things doing this:
- Leu is afraid of fire.
- Leu loves cupcakes.
The first 2 weeks of work have been pretty good. Trying to figure out what's happened in the last 5 months has been slow going but I'm starting to get back into the swing of things. My co-workers threw me a "Welcome Back" lunch the second week. I was very touched.
My fatigue level is much better now than even a month ago. If I can get up and get going I do pretty good all day. As soon as I relax though, I crash. I slept all but 4 hours yesterday. Leu kept me company for some of those.
Wendy basically woke me up for meals, after which I would promptly fall right back asleep.
In the interest of full disclosure we haven't made any "tangible" progress on the baby front. We lost another very early pregnancy over the Christmas holiday. It lasted just long enough for us to get excited about it. That made the holiday a little bittersweet, celebrating the progress my treatment has made while trying not to feel kicked in the teeth by the loss of another pregnancy. We've still got our chins up and we're hopeful though. It'll happen.
My next appointment at Stanford will be March 3. Till then, it should be steady as she goes....
Tuesday, January 13, 2009
Back In Action
I'm back at work as of yesterday. My company has very generously held my position while I was out. I'm lucky to work for such good folks. This should be a good change, I definitely need some structure in my life. A regular routine will do me good. I'm also hoping that some activity and socialization will help reduce the fatigue. Luckily my job has no set hours so I don't get too many frowns when I walk in at 11am. By next week I hope to have adjusted and be in at a regular time.
On a touchy feely note, the hardest part about going back to work has been leaving Cancer Dog at home by himself all day. After 5 months of non-stop, daily contact, I feel a little guilty leaving him alone and honestly, I miss him a little bit. I never thought I'd get so attached to an animal.
As things begin to return to normal for me I'm constantly reminded of how easily they can go awry. Sadly, Dawn passed away last week due to complications from her bone marrow transplant. She fought quite a battle and my heart goes out to Mike and her family.
I've also been talking with a young woman from Washington for a few months who was diagnosed with CML in the fall of 2008. She was doing well on Gleevec until they found leukemia cells in her Central Nervous System a couple of weeks ago. Gleevec doesn't work when the cancer invades the CNS. Consequently, she has been switched to Sprycel and will go through 3 rounds of radiation over the next month to kill the rogue cells. I'd never heard of CML invading the Central Nervous System. Apparently, that's why the doctor always asks me if I'm getting more headaches than usual.
These kinds of things remind me not to get complacent about my treatment and that it's important to continue supporting the causes that make that treatment possible.
On a touchy feely note, the hardest part about going back to work has been leaving Cancer Dog at home by himself all day. After 5 months of non-stop, daily contact, I feel a little guilty leaving him alone and honestly, I miss him a little bit. I never thought I'd get so attached to an animal.
As things begin to return to normal for me I'm constantly reminded of how easily they can go awry. Sadly, Dawn passed away last week due to complications from her bone marrow transplant. She fought quite a battle and my heart goes out to Mike and her family.
I've also been talking with a young woman from Washington for a few months who was diagnosed with CML in the fall of 2008. She was doing well on Gleevec until they found leukemia cells in her Central Nervous System a couple of weeks ago. Gleevec doesn't work when the cancer invades the CNS. Consequently, she has been switched to Sprycel and will go through 3 rounds of radiation over the next month to kill the rogue cells. I'd never heard of CML invading the Central Nervous System. Apparently, that's why the doctor always asks me if I'm getting more headaches than usual.
These kinds of things remind me not to get complacent about my treatment and that it's important to continue supporting the causes that make that treatment possible.
Wednesday, January 7, 2009
New Years Resolutions
If you haven' t made a new years resolution yet, or if you have but want to go for the gold, please consider making or adding the following to your resolution(s).
Happy New Year to you all.
- Join the National Marrow Donor Registry. There are people all over the country who need a transplant who will die this year because they can' t find a suitable bone marrow/stem cell match. Joining only takes a few minutes of your time and a few dollars. If you're cheap (like me) you can find a local bone marrow drive near you where the cost will be covered. (Light the Night is one such event.) If you can't find an event near you contact the Leukemia and Lymphoma Society and they should be able to find a way to help you. Wendy joined at a Light the Night walk this past summer.
You're under no obligation to actually donate even if you're registered. If, at some point, you are matched and do choose to donate however, you will literally have saved someone's life. Please, please, please register. - Donate blood, often or even just once. This helps a lot of hospitalized individuals, not just those with Leukemia or other types of cancer. People undergoing radiation or chemotherapy treatments are often in need of blood. Recently, Dawn's hospital almost ran out of her blood type and had to ration her transfusions. Donating blood costs you nothing and you usually get a cookie! You can contact the Red Cross or most any local hospital to find out how to donate.
Happy New Year to you all.
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