Sunday was my birthday. I kept it quiet and with the family. It was about the best day I have had in the last year. This is the anniversary of my being diagnosed with multiple myeloma. I wasn't sure how I would feel. What feeling would come up. I just wanted to be in the moment.
On Sunday night, I woke up with an incredible feeling of accomplishment; I did it! I did it! I kept saying to myself as a cried tears of relief and gratitude. I said I would beat the cancer and I did. I didn't do it by myself though.
As I felt my self grow weaker and more sick, I got into action. I talked to Adam and other freinds to let them know what was happening and asked for their help. I knew I was asking a lot. Within days a support group of more than 100 freinds family and neighbors was mustered. I was surrounded by a team of folks that were going to take care of me and all of the responsibilities that I wouldn't be able to take care of myself. I felt incredible gratitude.
With the security of knowing everything was OK I went into patient mode. I went to countless doctors appointments. I started taking drugs that are essentially poison. The pain I was experiencing grew greater and greater. I slipped into a fog of morphine use. I was furniture in the room instead of a contributing member of my family. I was a liability. I got nauseous and started loosing weight. Leaving the house became a major hardship and a trial of pain. Walking to the bathroom was my limit, sometimes more than I could do.
The whole time the Chickenhawk was taking care of me. She was talking to the doctors and understanding what they were saying. I just couldn't do it. She took me everywhere. She cleaned up my puke and poop and piss. Her family rallied around her. Her Mom and Dad came and ran our house for weeks, feeding the kids, taking them to school. Her Sisters either came to help or took the kids for weeks at a time or both. We missed our girls terribly.
My community stood up around me. We had a work day in which 50 people showed up to do all the yard work and projects that I would have done for the next year and cleaned the house from top to bottom. So much happened in that one day it was amazing. Friends brought meals, planted the garden with herbs to ease the pain, made music, made art, made bread, just sat with me while I rambled my morphine/ nausea/ pain ramble.
The original treatment plan stopped working. The doctors recommended plan b, a stem cell transplant. We began the long process in June. I started chemotherapy. Long painful drives to Stanford, overnight stays in grungy motels or hospital beds became the norm. I'd get filled with poison and drive four hours home. The nausea got worse. I puked all the time. I lost weight. I got hospitalized. Then I got more Chemo and the whole thing started again, home, sick, hospital I cant remember it all.
Then came the actual stem cell transplant. For the first three weeks I was really bad. Almost died. Weeks were like days. Minutes felt like hours. KT, Adam, Billy, David, Mom and the Chickenhawk stayed by bed the whole way through. It was a trip to hell. I walked out the hospital 2 months after going in.
My body was wasted, I could barely walk. I had to have supplemental O2. My dad sat with me in the medical apartment and patiently took care of me. We went for walks... up to 100 yards!
I finally came home. I was still a liability but I was getting better. I had to re-learn so many things. I was really weak. I was with my kids! I started driving again. I got sick. I got better with out spending the night in the hospital. Then I got sick again, and recovered again. I started feeling good. I found out the cancer was gone! I started getting off of the drugs and my brain came back. I walked out of the fog. I started caring about things other than my health. I started exercising my body. I got stronger. I slept less. I spent more time with my girls. I felt love. I feel love. I made it. Thank you, everyone that helped me. I couldn't have done it without you.
Thursday, February 19, 2009
Thursday, February 5, 2009
Good Intelligence is Key
Well... three weeks since I last posted. Lots of stuff happening. First I want to lay some cool stuff that I've come across on ya . Both are NPR reports. One gives a lot of hope and the other just makes me say wtf? Check them out tell me what you think.
Morning Edition, January 29, 2009 · The chances of surviving cancer have been increasing in recent years. One of the most dramatic success stories in cancer care involves a little-known cancer called multiple myeloma that had been among the deadliest types of the disease. Listen or read here: Link
When I was in school this is the last type of illegal drug we had on our minds.
Morning Edition, February 5, 2009 · They're commonly called "smart drugs" or "study drugs." Scientists call them "cognitive enhancers." Drugs like Adderall and Ritalin, generally prescribed for attention-deficit disorder, are increasingly being used by college students to help them study despite serious side effects, researchers say. Link
Now you not only have to worry about the dopers in the peleton but you have to look out for them in the cube next to you. They really have a pill for everything now.
Today I am sitting around waiting for my oncologist to call. Yesterday he called and left a message. "Your lab results are in and I need to talk to you as soon as possible." was his message. It is now 24 hours since he called and I have left him 4 messages since but no return call. What is up with my test results? I am not too worried because my mole at Kaiser has gone into my records and found the test results. Something in there is a bit askew but we (my mole, the Chickenhawk and I) don't know how to interpret the numbers on the test. The cancer markers are still in the "best we could hope for range." So I am chillin'.
If I didn't have a mole inside the Kaiser organization gathering intelligence I would probably be pushing the threat level into the Red range right now. Good intelligence is key in the war against Kaiser. If I don't hear from them by 2:30 I am going to make a frontal assault on their voice mail system in an attempt to talk to a human. You know, they discourage that. Talking to humans...
Post script: the doc called at 2:10. everything is fine.
RECOVERY REPORT
I am doing great. Dennis Eagan has been really helping me a lot. With his instruction I have regained a lot of strength and balance. I am walking almost normally now and getting stronger. I still need to make more time to exercise but it is working out. I am still having troubles getting off of prednisone and it is big pain in the butt that I don't care to elaborate on. Everything is good right now and I am healthier and feel better than I was a year ago.
BTW I have discovered Facebook and am enjoying it. Come find me there and check in.
Morning Edition, January 29, 2009 · The chances of surviving cancer have been increasing in recent years. One of the most dramatic success stories in cancer care involves a little-known cancer called multiple myeloma that had been among the deadliest types of the disease. Listen or read here: Link
When I was in school this is the last type of illegal drug we had on our minds.
Morning Edition, February 5, 2009 · They're commonly called "smart drugs" or "study drugs." Scientists call them "cognitive enhancers." Drugs like Adderall and Ritalin, generally prescribed for attention-deficit disorder, are increasingly being used by college students to help them study despite serious side effects, researchers say. Link
Now you not only have to worry about the dopers in the peleton but you have to look out for them in the cube next to you. They really have a pill for everything now.
Today I am sitting around waiting for my oncologist to call. Yesterday he called and left a message. "Your lab results are in and I need to talk to you as soon as possible." was his message. It is now 24 hours since he called and I have left him 4 messages since but no return call. What is up with my test results? I am not too worried because my mole at Kaiser has gone into my records and found the test results. Something in there is a bit askew but we (my mole, the Chickenhawk and I) don't know how to interpret the numbers on the test. The cancer markers are still in the "best we could hope for range." So I am chillin'.
If I didn't have a mole inside the Kaiser organization gathering intelligence I would probably be pushing the threat level into the Red range right now. Good intelligence is key in the war against Kaiser. If I don't hear from them by 2:30 I am going to make a frontal assault on their voice mail system in an attempt to talk to a human. You know, they discourage that. Talking to humans...
Post script: the doc called at 2:10. everything is fine.
RECOVERY REPORT
I am doing great. Dennis Eagan has been really helping me a lot. With his instruction I have regained a lot of strength and balance. I am walking almost normally now and getting stronger. I still need to make more time to exercise but it is working out. I am still having troubles getting off of prednisone and it is big pain in the butt that I don't care to elaborate on. Everything is good right now and I am healthier and feel better than I was a year ago.
BTW I have discovered Facebook and am enjoying it. Come find me there and check in.
Thursday, January 15, 2009
When North is South and South is North
I have written before about the insults of cancer. I.V.s , needles, poop tests, pee tests, anything that comes out of your body, they’ll collect it and test it. I have to take about 60-70 pills a day at four different sittings. I say sitting because you can’t really do much else when you’ve got a little dish of 16 pills that you have to gulp down. It takes concentration to dole them all out in the right amount and then take one at a time. Pill goes to tongue, water glass comes to lips, surround pill with water, swallow. Sounds simple right? Well once in a while concentration gets broken at the wrong moment and things can go really, really wrong. So I am cautious about my pill taking. You would be too.
In the past I have swallowed a little wrong and the pill scrapes my throat on the way down. It feels like a sore throat for a couple of hours. About once a day the pill just goes down wrong and I get indigestion and burps for 15 minutes.
But the worst, the absolute worst, is when a pill goes up your nose. That’s right it has happened three times now, out of several thousand pills I have consumed in the last year. It happened tonight; I was all prepped: pill on the right spot on the tongue, water in the right proportion, and the pill was on its way. Suddenly to my left someone says something that I must turn towards and that medium sized phosphorus pill goes up my right sinus hole. You know, the little tunnel that connects your mouth to your nose? It is the reason that 6th graders at the lunch table can make their friend’s milk come out of their nose if they tell a joke with perfect timing.
So the little pill goes up my nose hole and gets wedged. It is painful instantly. Stupidly, the first thing I did was blow my nose (wrong direction) thereby wedging it farther up there. Then we ran for the nose flusher. The nose flusher is one of those cold prevention gimmicks; a little plastic 2oz. squirt bottle that comes with little packet of special medicine (salt). It has a top that fits in your nostril and you squeeze the salt water in and flush the boogies out. Or in my case the Urocit K potassium supplement tablet.
The first time it happened I was home alone and had no idea what to do. All I knew is that my sinuses were on fire and something was pushing against my brain right behind my eye. After a few minutes of whimpering I remembered the sinus flusher. I went looking for it but could not find it. It is hard to look for things when you are in agony. Luckily the Chickenhawk had her cell phone with her AND knew where the thing was.
This evening she saw the look on my face and went and got the flusher for me. I flushed and I flushed but nothing would come out, well not the pill anyway. I did start to feel relief so I took a break and finished taking all my other pills. As I did, the pain welled back up and I went back to the flusher. After a few more vigorous tries, the partially dissolved pill fell into the back of my throat and the pain was gone.
Another day in the life…
In the past I have swallowed a little wrong and the pill scrapes my throat on the way down. It feels like a sore throat for a couple of hours. About once a day the pill just goes down wrong and I get indigestion and burps for 15 minutes.
But the worst, the absolute worst, is when a pill goes up your nose. That’s right it has happened three times now, out of several thousand pills I have consumed in the last year. It happened tonight; I was all prepped: pill on the right spot on the tongue, water in the right proportion, and the pill was on its way. Suddenly to my left someone says something that I must turn towards and that medium sized phosphorus pill goes up my right sinus hole. You know, the little tunnel that connects your mouth to your nose? It is the reason that 6th graders at the lunch table can make their friend’s milk come out of their nose if they tell a joke with perfect timing.
So the little pill goes up my nose hole and gets wedged. It is painful instantly. Stupidly, the first thing I did was blow my nose (wrong direction) thereby wedging it farther up there. Then we ran for the nose flusher. The nose flusher is one of those cold prevention gimmicks; a little plastic 2oz. squirt bottle that comes with little packet of special medicine (salt). It has a top that fits in your nostril and you squeeze the salt water in and flush the boogies out. Or in my case the Urocit K potassium supplement tablet.
The first time it happened I was home alone and had no idea what to do. All I knew is that my sinuses were on fire and something was pushing against my brain right behind my eye. After a few minutes of whimpering I remembered the sinus flusher. I went looking for it but could not find it. It is hard to look for things when you are in agony. Luckily the Chickenhawk had her cell phone with her AND knew where the thing was.
This evening she saw the look on my face and went and got the flusher for me. I flushed and I flushed but nothing would come out, well not the pill anyway. I did start to feel relief so I took a break and finished taking all my other pills. As I did, the pain welled back up and I went back to the flusher. After a few more vigorous tries, the partially dissolved pill fell into the back of my throat and the pain was gone.
Another day in the life…
Thursday, January 8, 2009
Community Through Suffering
Well it has been a lot longer than I would have liked… apologies. I have been working on another writing project that has dominated my time. It is over now and I am glad to have it done and very happy with the outcome. I was writing a letter of recommendation for a friend of mine who is applying to Stanford’s MBA program. I am really proud of him and hope that gets in to that very competitive program.
I thought I would share what is on my mind lately. I have been a bit of a hermit. I’ve really only spent time with my immediate family for the last couple of weeks. I am not sure why but I have wanted to keep things low key. The people that I have talked with have all been very complimentary with me about how I have handled the last year. It has been nice but at a certain point I get uncomfortable with a lot of praise. The fact of the matter is that I did what anyone else would do in my position. I fought with everything I had. I think the only thing I did differently than the average cancer patient is that I shared as much as I could. I stated my goals almost as soon as I got diagnosed. I wanted to share the experience with as many people as I could and bring them in to it as much as they wanted to go. I got a real benefit from doing that. In fact I think it saved my life. The people that got involved with my illness stepped up and gave help of all sorts. It was an amazing showing of support. Everyone that got involved, over 100 people, contributed in the way that they knew how. Some folks worked on our house, some stayed with me sometimes for days and days so that the ChickenHawk could get out, some watched the kids, a garden was made, some brought meals, some came and ran our house for a week or two, some just gave us money, countless tasks that we just couldn’t get to were taken care of.
My Cancer became a community event in the Coloma Lotus Valley with many hands making light work. We all did it we all got me through the cancer. The Chickenhawk and I did the heavy lifting but we all did it. When I was in the hospital during the dark days of the transplant, I had a poster in my room. It was an enlarged group photo from the burrito party that we threw right before I went into the hospital for the BMT. There are about 60 people from the community in the picture. It made me feel really good. When I was deep in the pains of cancer, I would look up at that photo and feel the warmth of all the faces smiling at me and supporting me and telling me to come home. It really worked, I knew that I was loved and supported and I would redouble my effort at whatever I was doing at the moment. It was a group effort that got me through. So if you were one of the folks involved in the whole Spencer has Cancer Process, I want to say thank you for your help in saving my life.
The Latest Update:
I am continuing to feel better. I have been tapering my prednisone dose by smaller amounts and that seems to help with the withdrawals. My legs are working really well. I am starting to walk pretty much with a normal gate. My lungs are clear but still impaired. I am doing yoga, riding the stationary bike and doing some resistance workouts. I am still dealing with major fatigue, I slept 13 hours the night before last. I often just shut down and snooze so no long drives… The pain in my ribs and shoulder is almost gone.
I am starting to think about going for a bike ride, I wonder if I still remember how or will it be another thing I have to re-learn.
I thought I would share what is on my mind lately. I have been a bit of a hermit. I’ve really only spent time with my immediate family for the last couple of weeks. I am not sure why but I have wanted to keep things low key. The people that I have talked with have all been very complimentary with me about how I have handled the last year. It has been nice but at a certain point I get uncomfortable with a lot of praise. The fact of the matter is that I did what anyone else would do in my position. I fought with everything I had. I think the only thing I did differently than the average cancer patient is that I shared as much as I could. I stated my goals almost as soon as I got diagnosed. I wanted to share the experience with as many people as I could and bring them in to it as much as they wanted to go. I got a real benefit from doing that. In fact I think it saved my life. The people that got involved with my illness stepped up and gave help of all sorts. It was an amazing showing of support. Everyone that got involved, over 100 people, contributed in the way that they knew how. Some folks worked on our house, some stayed with me sometimes for days and days so that the ChickenHawk could get out, some watched the kids, a garden was made, some brought meals, some came and ran our house for a week or two, some just gave us money, countless tasks that we just couldn’t get to were taken care of.
My Cancer became a community event in the Coloma Lotus Valley with many hands making light work. We all did it we all got me through the cancer. The Chickenhawk and I did the heavy lifting but we all did it. When I was in the hospital during the dark days of the transplant, I had a poster in my room. It was an enlarged group photo from the burrito party that we threw right before I went into the hospital for the BMT. There are about 60 people from the community in the picture. It made me feel really good. When I was deep in the pains of cancer, I would look up at that photo and feel the warmth of all the faces smiling at me and supporting me and telling me to come home. It really worked, I knew that I was loved and supported and I would redouble my effort at whatever I was doing at the moment. It was a group effort that got me through. So if you were one of the folks involved in the whole Spencer has Cancer Process, I want to say thank you for your help in saving my life.
The Latest Update:
I am continuing to feel better. I have been tapering my prednisone dose by smaller amounts and that seems to help with the withdrawals. My legs are working really well. I am starting to walk pretty much with a normal gate. My lungs are clear but still impaired. I am doing yoga, riding the stationary bike and doing some resistance workouts. I am still dealing with major fatigue, I slept 13 hours the night before last. I often just shut down and snooze so no long drives… The pain in my ribs and shoulder is almost gone.
I am starting to think about going for a bike ride, I wonder if I still remember how or will it be another thing I have to re-learn.
Wednesday, December 24, 2008
Bail out the Big 3 or National Health Care
I have been hemming and hawing about the surrounding funding for the Ford Chrysler and GM for some time. We (the people) and our government are in a Catch 22. If we bail them out, we are enabling them to keep going making their substandard products. If we don’t bail them out and they go BK our recession is going to be that worse. When I am in a Catch 22 (as I was most of last week) I try to look for alternatives.
Fridays Democracy Now! Had a great piece with Greg Shotwell , an activist involved in the debate. He made me realize how the US fails to make a business friendly environment by putting the burden of funding health care on the employer. Our cars cost more to make and there is less profit for the big 3 (when they make product in the US) so it is hard for our guys to compete:
Democracy Now! Is a great radio program you can stream the piece I am talking about, download a podcast or you can read the transcripts of the interview on line. It is a deep issue that is not oing to get solved overnight. The government has been subsidizing the automakers for years. That makes them complacent like fat children who don’t have to work too hard. They don’t have to be competitive with the rest of the market because they’ll just get bailed out. At the same time if we the people had been putting those subsidy dollars into a national health care system, then everyone would be insured, the car makers would have to be lean and clean but their profit margins would be significantly higher as they would no longer be running and funding their own healthcare system.
Health update: In the last three weeks I have been diagnosed with 2 infections; Cellulitis and C-diff (an intestinal thing.) I am also on antibiotics for pneumonia. There is also some kind of inflammation in my left foot that is making walking pretty darn painful. I think it is plantar fasciitis. It has been about as fun as pushing a road bike through 20 inches of sloppy snow. My attitude is OK I just feel grumpy but I almost always do this time of year.
The kids are really fired up for Santa’s visit tonight. The CH has been baking up a storm. It has been raining like crazy and snowing in the hills above us. Next year maybe we’ll all be snowboarding.
Happy Holidays and the best possible 2009 to all of you out there.
Thanks for reading.
Fridays Democracy Now! Had a great piece with Greg Shotwell , an activist involved in the debate. He made me realize how the US fails to make a business friendly environment by putting the burden of funding health care on the employer. Our cars cost more to make and there is less profit for the big 3 (when they make product in the US) so it is hard for our guys to compete:
I would like to see, first and foremost, that we have national healthcare,Click on this link or paste it to your broweser for more info: http://www.democracynow.org/2008/12/19/us_auto_giants_workers_face_uncertain
because this is the one solution that would help everyone. It would help the
employers. It would help the employees. It would help the consumers. And that is
the biggest factor that takes away our competitiveness. That’s the one factor
that would level the playing field, because all of our competitors have national
healthcare and stronger pension systems in their country—and by “pension,” I
mean government pension—so that when Toyota, you know, imports all these cars,
they’re not paying for healthcare, they’re not paying for the pensions on those
employees that are working overseas.
Greg Shotwell on Democracy Now
12/19/08
Democracy Now! Is a great radio program you can stream the piece I am talking about, download a podcast or you can read the transcripts of the interview on line. It is a deep issue that is not oing to get solved overnight. The government has been subsidizing the automakers for years. That makes them complacent like fat children who don’t have to work too hard. They don’t have to be competitive with the rest of the market because they’ll just get bailed out. At the same time if we the people had been putting those subsidy dollars into a national health care system, then everyone would be insured, the car makers would have to be lean and clean but their profit margins would be significantly higher as they would no longer be running and funding their own healthcare system.
Health update: In the last three weeks I have been diagnosed with 2 infections; Cellulitis and C-diff (an intestinal thing.) I am also on antibiotics for pneumonia. There is also some kind of inflammation in my left foot that is making walking pretty darn painful. I think it is plantar fasciitis. It has been about as fun as pushing a road bike through 20 inches of sloppy snow. My attitude is OK I just feel grumpy but I almost always do this time of year.
The kids are really fired up for Santa’s visit tonight. The CH has been baking up a storm. It has been raining like crazy and snowing in the hills above us. Next year maybe we’ll all be snowboarding.
Happy Holidays and the best possible 2009 to all of you out there.
Thanks for reading.
Wednesday, December 17, 2008
Good News, The Best Possible News
My Kappa Free Light Chain test was drawn last Friday, I met with the doc yesterday and the results were already in, which is unusual. They were the best we could hope for; they are within normal ranges! The cancer is out of me. My body should begin to heal. The bones should already be starting to repair themselves. It hasn’t really sunken in yet. I cried for a few minutes in the doctor’s office yesterday but I have yet to feel a big sense of relief.
I have had SO MUCH bad news in the last year. At every point where things could go bad or worse they went worse. At every point where there was 30% (or whatever) chance that I would get some complication from some treatment I would get the complication. Then there were the complications that were completely random like Fanconi Sydrome that just kicked my butt. Let’s not forget that I have fought off now two infections in the last couple of weeks. After so many conversations with doctors where the tone is grave, and I end up saying, “OK let’s do that treatment too, I can handle it.” The doctor leaves the room and I cry and bracing myself for the next insult to my body and often dignity.
My guard is way up. This must be similar to how a soldier feels returning to life after being in battle.
This is the guy who tries to live in gratitude as much as possible. I try to count my blessings all the time. Maybe I have lost track of that lately.
Here is the Blessing Count: Cancer out of my blood, being married to the ChickenHawk, two beautiful daughters, a wonderful supportive family, a community that is the best that I can imagine and helped my family through a really really rough patch, I have a job to go back to and the list could go on and on.
OK , that helped. It is a big transition. I can start making long term plans again. I will see my kids grow. I will be a husband to my wife rather than a patient. I can plan on a future instead of saying, “that would be nice to do… if I’m feeling up to it.” Training will have meaning, like I’m not gonna’ die before whatever-it-is that I am training for.
Still, my life is different than it was a year ago. I am still trying to find the new normal. I’ll do it one step at a time.
There is more to write but I’m tired. I’ll try to post more soon.
Thanks for reading and thanks for your support
I have had SO MUCH bad news in the last year. At every point where things could go bad or worse they went worse. At every point where there was 30% (or whatever) chance that I would get some complication from some treatment I would get the complication. Then there were the complications that were completely random like Fanconi Sydrome that just kicked my butt. Let’s not forget that I have fought off now two infections in the last couple of weeks. After so many conversations with doctors where the tone is grave, and I end up saying, “OK let’s do that treatment too, I can handle it.” The doctor leaves the room and I cry and bracing myself for the next insult to my body and often dignity.
My guard is way up. This must be similar to how a soldier feels returning to life after being in battle.
This is the guy who tries to live in gratitude as much as possible. I try to count my blessings all the time. Maybe I have lost track of that lately.
Here is the Blessing Count: Cancer out of my blood, being married to the ChickenHawk, two beautiful daughters, a wonderful supportive family, a community that is the best that I can imagine and helped my family through a really really rough patch, I have a job to go back to and the list could go on and on.
OK , that helped. It is a big transition. I can start making long term plans again. I will see my kids grow. I will be a husband to my wife rather than a patient. I can plan on a future instead of saying, “that would be nice to do… if I’m feeling up to it.” Training will have meaning, like I’m not gonna’ die before whatever-it-is that I am training for.
Still, my life is different than it was a year ago. I am still trying to find the new normal. I’ll do it one step at a time.
There is more to write but I’m tired. I’ll try to post more soon.
Thanks for reading and thanks for your support
Monday, December 8, 2008
Coming Back
I was just reading my little bio up there in the right hand corner of the page. "....fighting cancer so I can get back to all that stuff." What high hopes! My life has changed and changed permanently. I've got to change that bio. The truth is I am feeling ripped off, angry and sad. This weekend was a big freakin' let down. I had really fun events scheduled for both days and have been looking forward to them for a month or so. Instead I spent the weekend contemplating my mortality and feeling like poop. I am feeling a lot better today, no fever, cough is getting better blah blah blah ok it is good news. See my last post for explanations
Getting sick means another management issue. Another doctor that I have make appointments with, another set of meds to take. These IV antibiotics I am taking take me an extra 20 minutes 3x a day and not when I take my other meds. That means an extra hour a day of dealing with meds. Luckily it doesn't go on forever.
I am feeling ripped off from getting to live a "normal" life. I have to live the life of a cancer survivor. All the work, pain, constant vigilance, the lack of security about the future (both immediate and long term) are starting to wear on me. The luster of leaving the hospital is fading and the transition to life in general is kicking my ass right now. I get a lot of positive feedback from all of my friends about how I remain so positive, and I appreciate it. But jeeez my attitude sucks right now. I know that is OK. My plan is to roll with it until the wheels fall off of that ugly huffy.
Yesterday the IV that I inject the meds through needed to be redone. That means I have to call a home health nurse to do it. It is great that they come to me! The alternative would be an ER visit. So the nurse drove an hour from Roseville, started the IV looked at it with an "oh shit" look and said, "I just used the wrong IV." She pulled the needle out, went to the car to look for the right equipment and returned empty handed 20 minutes later. She drove all the way to her home in Folsom (45 min one way) got the right thing and drove back. I felt bad for her. But I was really feeling bad for me.
That's all for now thanks for reading
Getting sick means another management issue. Another doctor that I have make appointments with, another set of meds to take. These IV antibiotics I am taking take me an extra 20 minutes 3x a day and not when I take my other meds. That means an extra hour a day of dealing with meds. Luckily it doesn't go on forever.
I am feeling ripped off from getting to live a "normal" life. I have to live the life of a cancer survivor. All the work, pain, constant vigilance, the lack of security about the future (both immediate and long term) are starting to wear on me. The luster of leaving the hospital is fading and the transition to life in general is kicking my ass right now. I get a lot of positive feedback from all of my friends about how I remain so positive, and I appreciate it. But jeeez my attitude sucks right now. I know that is OK. My plan is to roll with it until the wheels fall off of that ugly huffy.
Yesterday the IV that I inject the meds through needed to be redone. That means I have to call a home health nurse to do it. It is great that they come to me! The alternative would be an ER visit. So the nurse drove an hour from Roseville, started the IV looked at it with an "oh shit" look and said, "I just used the wrong IV." She pulled the needle out, went to the car to look for the right equipment and returned empty handed 20 minutes later. She drove all the way to her home in Folsom (45 min one way) got the right thing and drove back. I felt bad for her. But I was really feeling bad for me.
That's all for now thanks for reading
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