November 7, 2009 - Today was a red letter day for me. I got on my bicycle for the first time since September. With the thoughts of the wind blowing through my "hair" (I am sorry but the term "across my bald scalp" is just not poetic), I planned to ride off to find my wife running on the canals. The canals are about 3 1/2 to 4 miles away from the house, and this was a piece of cake back when I rode to work. So after I took all of my health supplements and ate a light snack, I proceeded to get my bike ready; inflating the tires, oiling my chain, getting my bike up to its optimum performance. I stocked the bike with water and Gatorade for my "long" ride. I got some money, just in case she wanted to meet me at Wildflower for breakfast after her run, grabbed my cell phone and was ready.
First thing I noticed is the 22 pound weight loss has not changed the snugness of the bike shorts, but the jersey is fitting much better. I looked at myself in the mirror and thought "Damn, you are looking good." The bald head really rocks the biker look. I look as though I could pass as a "real" biker. (I apologize to those who read this and think that the term "Biker" only applies to motorcyclers - we on the un-motorized bikes freely acknowledge that we are not as "hardcore" as you all.) So, with my plans in place, I will ride out to the canal. With great luck, I'll bump into my wife as she is out running 15 miles today.
As I head out I decide to give myself one lap around the neighborhood to become acclimated with my bike before venturing out on the major streets. Big mistake - have you ever stepped on the wrong side of a rake - only to have it jump up and hit you square in the face? Luckily I have not, but I get about halfway down the block and feel the muscles in my legs, chest and butt start to question what the hell am I doing. These muscles have had the luxury of two months of inactivity, or minimal use at best (four light poles - refer to earlier blog). My lungs start to scream at me. I feel my heart beat stronger that it has (at least without chemical help) in a long time. I turn the corner and head into the wind (okay it's really a nice breeze) and my pace slows dramatically. At this point I forget about meeting my wife, forget about breakfast, forget about leaving the neighborhood. My rake hit says, "Can I finish the lap around the neighborhood?" The lap is just under 2 miles. I make it and the 'challenge' part of my brain says, "Okay, you can go around this block again!" I go about another tenth and realize my legs, lungs and heart have it in for the brain and are saying, "What the hell are you doing going further away from the house?" Listening to my body and not my head, I take a shortcut and head back to the house. "Just make it home," I tell myself. I do. I open the garage, put back the water and Gatorade (unopened mind you), take off the bike shoes, put the bike away and go into the house and collapse in a chair - a recliner - which I do in fact recline. I sit and wait. My wife shows up shortly thereafter. She has had a great run. While she recovers and showers, I still sit. We end up going out to breakfast. I did not need to ride out and meet her on the canals, but I know that I need to ride more. Just not today.
Yesterday I met with a naturopathic oncologist. I was concerned of secondary infection and the lack of energy due to the chemo. The doctor only works with cancer patients, and set up a treatment plan for me with supplements and other things to help with the chemotherapy. I got a shot of Tramueel at his office that he thinks will help with some of the side effects of the Nuelasta shot I take as part of the chemo. I do feel better, so maybe this will help. He suggests a vitamin C IV treatment, which I get on Monday. With his help, I will be able to get back to exercising without losing my complete fitness level to this cancer.
So until next time, I will leave you with this thought; even though you have great plans and then find you cannot follow through, at least you had the plan and the attempt. I enjoyed getting on the bike despite the 'rake in the face' and hey, I still got breakfast. . .
Saturday, November 7, 2009
Friday, October 30, 2009
Ode to the Hair. . .Chemo Round 2 begins with good news.
Oct 27, 2009 - Well I am officially in the ranks of the unadorned, the skin-heads (not the gang), those in need of the hair club, a current (or former NBA player), or to put is simply, the bald. I returned to work this week as a bald man and it was interesting watching peoples' reactions. My co-workers were pretty cool with it. If they were shocked, they hid it well; but they did comment on it. I had three different clients come in and only one of them made any mention of my lack of hair. The other two checked out the head, but did not make any mention of it. One actually stayed and talked with me for a good ten minutes and never mentioned it. I guess I just looked too good.
I had to talk with other 'baldies' to get to know the ropes. "How often do you shave? What do you put on to get that nice sheen on the scalp? How do you avoid sunburn?" I went out and picked up a nice hat on Wednesday. Now I look a little more stylish when I go out.
Thursday Oct 29th 2009 - We begin round two of chemo with a visit with our oncologist. We have not seen him since our October 2nd appointment when we were told what kind of Lymphoma I have, and that we were beginning chemo the following Thursday. Results of the PET/CT scan show that I have infected lymph nodes in the right groin area that go down the right leg and into the pelvis. I have something in my chest, but he thinks this is a misread. The kind of Lymphoma I have does not travel well, so he is convinced that it is pretty localized. What this means for me is we stop chemo after six treatments. After that we go with some radiation to be sure that we leave no cancer cells behind (sounds like a good slogan for an education campaign, just don't tell this to a school teacher - trust me.) My oncologist is pretty convinced that we will kill most of the cancer cells after the third round of chemo. But again if three rounds are good, then six should be better right? It's the American way. If I can get a 32oz Big Gulp, why not get a 64oz Bigger Gulp? Supersize my chemo please, and yes, I would like fries with that.
So it looks like I will be done with this cancer thing sometime in February (yeah). Unfortunately it looks like I will not be able to do the PF Chang's this year. I have been told by not one, but two of my health care professionals that chemo is my marathon. So I will have the chance to follow and cheer on my wife this year as she represents 'Team Watson.' So again, God has been good in getting us into a running club for her to train with other runners. Otherwise this would be an extremely suckie Fall for training.
After two lab visits and having to wait, I finally get a chance to use this brand spanking new power port for round two. I was disappointed when I went to the lab and offered to use the power port, only to be told that the lab does not use them. Evidently you have to have specialized certification to use the port. After my first experience with it, I think maybe this is best. After the nurse cleans the skin, she sprays me with a numbing spray that is rather cold and stings a bit. She then sticks a needle in me that looks like a bent paper clip, and feels pretty much the same - she pushes it into my chest. It is like getting a lapel pin pushed into your chest (don't ask how I know this.) The advantage is that I don't feel the chemo drugs going into my body. The chemo treatment ends an hour earlier, so we are out of there by 12:30 rather than 1:30 which is when round one ended.
Side effects are still bearable; a little weak, a little nauseous. So as I write this I watch the Suns crush the Warriors, feeling good. . .Until next time.
I had to talk with other 'baldies' to get to know the ropes. "How often do you shave? What do you put on to get that nice sheen on the scalp? How do you avoid sunburn?" I went out and picked up a nice hat on Wednesday. Now I look a little more stylish when I go out.
Thursday Oct 29th 2009 - We begin round two of chemo with a visit with our oncologist. We have not seen him since our October 2nd appointment when we were told what kind of Lymphoma I have, and that we were beginning chemo the following Thursday. Results of the PET/CT scan show that I have infected lymph nodes in the right groin area that go down the right leg and into the pelvis. I have something in my chest, but he thinks this is a misread. The kind of Lymphoma I have does not travel well, so he is convinced that it is pretty localized. What this means for me is we stop chemo after six treatments. After that we go with some radiation to be sure that we leave no cancer cells behind (sounds like a good slogan for an education campaign, just don't tell this to a school teacher - trust me.) My oncologist is pretty convinced that we will kill most of the cancer cells after the third round of chemo. But again if three rounds are good, then six should be better right? It's the American way. If I can get a 32oz Big Gulp, why not get a 64oz Bigger Gulp? Supersize my chemo please, and yes, I would like fries with that.
So it looks like I will be done with this cancer thing sometime in February (yeah). Unfortunately it looks like I will not be able to do the PF Chang's this year. I have been told by not one, but two of my health care professionals that chemo is my marathon. So I will have the chance to follow and cheer on my wife this year as she represents 'Team Watson.' So again, God has been good in getting us into a running club for her to train with other runners. Otherwise this would be an extremely suckie Fall for training.
After two lab visits and having to wait, I finally get a chance to use this brand spanking new power port for round two. I was disappointed when I went to the lab and offered to use the power port, only to be told that the lab does not use them. Evidently you have to have specialized certification to use the port. After my first experience with it, I think maybe this is best. After the nurse cleans the skin, she sprays me with a numbing spray that is rather cold and stings a bit. She then sticks a needle in me that looks like a bent paper clip, and feels pretty much the same - she pushes it into my chest. It is like getting a lapel pin pushed into your chest (don't ask how I know this.) The advantage is that I don't feel the chemo drugs going into my body. The chemo treatment ends an hour earlier, so we are out of there by 12:30 rather than 1:30 which is when round one ended.
Side effects are still bearable; a little weak, a little nauseous. So as I write this I watch the Suns crush the Warriors, feeling good. . .Until next time.
Sunday, October 25, 2009
A really good week. . .
October 25th, 2009 - Today is Sunday. It's been a while since I have blogged, so let me catch everyone up with what has been going on here at home central. I got the results of my PET/CT scan. I have lymph nodes in the right groin area (where the hernia was) that are cancerous, along with one lymph node in the right chest. No organs have been involved with the lymphoma, so this is all good news. I meet this Thursday with the doctor, and hopefully find out all of the other results of my tests and the duration of my treatment.
Monday I had my first "run" since four days before my hernia surgery. Now I only ran a distance of about four light poles, but it was running and I was able to do this twice. Look out marathon, I am on my way. The legs were a little wobbly, but they held up. Tuesday I actually went for a run with my wife, and was able to run for short distances off and on for two and a half miles.
Wednesday was a day of setbacks as I got a cold. Now my wife would say I was overdoing it on Monday and Tuesday, and that's how I got this cold, but I think it was all part of a vast global Cancer conspiracy - one in which I am merely a pawn, but I digress. I went to my chiropractor later on Wednesday, and received a bunch of supplements which have helped me get over the cold pretty fast. (Thereby foiling the great cancer plot.)
Friday was my wife's birthday and to celebrate, she ran a half marathon on Saturday. I was able to get out and cheer her on at the seven mile mark, and also greet her at the finish. Even with all the stuff that is going on with me, she is continuing to do well in her training and running. She is an inspiration. I can only hope I can catch up with her once all of this (fill in blank) is over.
Today is Sunday and after mass, my wife and I went shopping to buy me some clothes that fit. I have lost 20 pounds since the hernia surgery, so if you are on my Facebook, check out the photos. In my current profile picture, I'm wearing the same outfit I was wearing in San Diego in August. My once prominent stomach is much less so. I won't say it is gone, but at least it doesn't arrive five minutes before I walk into a room. So there is one positive aspect of this cancer thing.
And now I must ask that we all take a moment of silence to note the passing of my hair. Now I was told to expect this, but after two weeks out from the chemo I was thinking; "Hey, maybe I am in such good shape I won't lose my hair." Nice thought, but WRONG. As I was sitting down Thursday, I noticed a hair falling through the sunlight. Then another. Now this is a little gross, so proceed at your own caution: I put my thumb and index finger into my hair and gave a little pull and at least 20-30 hairs were there. Running my fingers through the hair creates a ticker-tape like parade of cascading hairs falling into the bathroom sink. So Friday night my wife gave me a close trim, i.e. a crew cut. But I can still sit and pull my hair out (literally). So today I argue with myself whether it is time to just get out the razor and get it over with? Is it better to have a crew cut with bald patches, or just be totally bald? I will need to ask my nephew and brother in law about this, but I think I already know their answer.
In the meantime, I continue to get stronger and am able to do more with more energy as I await my next round of chemo this Thursday - right after I meet with my doctor. Thank you for your prayers, I believe they are giving me the strength to endure. Until next time. . .
Monday I had my first "run" since four days before my hernia surgery. Now I only ran a distance of about four light poles, but it was running and I was able to do this twice. Look out marathon, I am on my way. The legs were a little wobbly, but they held up. Tuesday I actually went for a run with my wife, and was able to run for short distances off and on for two and a half miles.
Wednesday was a day of setbacks as I got a cold. Now my wife would say I was overdoing it on Monday and Tuesday, and that's how I got this cold, but I think it was all part of a vast global Cancer conspiracy - one in which I am merely a pawn, but I digress. I went to my chiropractor later on Wednesday, and received a bunch of supplements which have helped me get over the cold pretty fast. (Thereby foiling the great cancer plot.)
Friday was my wife's birthday and to celebrate, she ran a half marathon on Saturday. I was able to get out and cheer her on at the seven mile mark, and also greet her at the finish. Even with all the stuff that is going on with me, she is continuing to do well in her training and running. She is an inspiration. I can only hope I can catch up with her once all of this (fill in blank) is over.
Today is Sunday and after mass, my wife and I went shopping to buy me some clothes that fit. I have lost 20 pounds since the hernia surgery, so if you are on my Facebook, check out the photos. In my current profile picture, I'm wearing the same outfit I was wearing in San Diego in August. My once prominent stomach is much less so. I won't say it is gone, but at least it doesn't arrive five minutes before I walk into a room. So there is one positive aspect of this cancer thing.
And now I must ask that we all take a moment of silence to note the passing of my hair. Now I was told to expect this, but after two weeks out from the chemo I was thinking; "Hey, maybe I am in such good shape I won't lose my hair." Nice thought, but WRONG. As I was sitting down Thursday, I noticed a hair falling through the sunlight. Then another. Now this is a little gross, so proceed at your own caution: I put my thumb and index finger into my hair and gave a little pull and at least 20-30 hairs were there. Running my fingers through the hair creates a ticker-tape like parade of cascading hairs falling into the bathroom sink. So Friday night my wife gave me a close trim, i.e. a crew cut. But I can still sit and pull my hair out (literally). So today I argue with myself whether it is time to just get out the razor and get it over with? Is it better to have a crew cut with bald patches, or just be totally bald? I will need to ask my nephew and brother in law about this, but I think I already know their answer.
In the meantime, I continue to get stronger and am able to do more with more energy as I await my next round of chemo this Thursday - right after I meet with my doctor. Thank you for your prayers, I believe they are giving me the strength to endure. Until next time. . .
Saturday, October 17, 2009
Turning life back to normal. . .
October 17, 2009 - The last 24 hours have been very special. Last night I had my first night out since the hernia surgery almost a full month ago. My wife and son and I all went out to dinner and then to see the Suns in a preseason game against the 76ers. Suns won 115-113, which was close as the Suns reserves could not hold the lead the starters had given them in the third quarter. We left when it was a Suns blowout.
Dinner was great in that I did not worry about what I was eating. I saw something on the menu (a Willie cheese steak sandwich) and ordered it. My wife who has been very cautious of what she has been feeding me for the last month did a good job of holding her tongue. As of yesterday, I have lost 20.5 pounds since my hernia surgery. My goal for yesterday was to gain weight for the day and not continue to lose it. Mission accomplished. I put three pounds back on this morning - will have to see if it stays with me tomorrow.
This morning I woke up after my wife left for her Saturday morning long run (eleven miles). I got up and headed out to the canals for a morning walk. I took a chance that the running club would be heading south today and guessed right. I ran into my wife on the canal. I had to walk right in front of her, or she would have just kept running passed me. My energy levels for today have been great. This is the best I have felt in a month. On my walk I was listening to a song by Natasha Bedingfeld called "Happy." The lyrics summed up my morning walk, culminating in the line that, "I have some many beautiful reasons to be happy".
I realize that I am happy, not for the diagnosis, but for the opportunity to grow in my own courage. To accept love from family and friends during this time. I take my life with a little more gratitude, and I celebrate the mundane things that make my life "normal." When you first hear the words that you have cancer, or you could have cancer, you go through many thoughts. You have many fears, but I can say I have come to terms with it. I refuse to live my life consumed with fear. My wife gave me a quote from Eleanor Roosevelt, "You gain strength, courage, and confidence by every experience in which you stop to look fear in the face." I feel much stronger today than I have in the last couple of weeks. Maybe I have looked fear in the face, and I am feeling stronger for it.
Earlier this week I had a power port put into my chest that will help protect my veins during chemotherapy. It is a triangular piece of plastic with a circular membrane that needles can be inserted into through my skin. It has a tail that is put into my jugular vein. It is a little over a half inch thick, so I feel the pressure of it in my chest if I push on it. Once the inflammation goes down I am told I will not notice it much. Right now it hurts if I rub it, bump it, or receive a hug. So if I seem a little gun shy as you come in for a hug, you know why. I also had a bone marrow biopsy done at the same time, which has left a silver dollar sized bruise on the back of my right hip. I was totally out for both of these procedures for which I am extremely grateful.
It has been a little over a week since my first chemo session, and I have to say I have learned a bit. I still have my hair, which may or may not be good. Since I was told I would lose it, I have not wanted to spend the money to get it cut, just to have it fall out. This is the frugal part of me I admit; but if the bank tells you they are coming to take away your truck, the last thing you want to do is go out and get it washed and waxed. I know I will probably experience a lot of the side effects that have been promised. I have seen that these will not necessarily last long, but will come and go with the treatment. I will have highs and lows for the week of the treatment, but if I just take each day as it comes I will get through it. As I get though it. . . I will get stronger.
Dinner was great in that I did not worry about what I was eating. I saw something on the menu (a Willie cheese steak sandwich) and ordered it. My wife who has been very cautious of what she has been feeding me for the last month did a good job of holding her tongue. As of yesterday, I have lost 20.5 pounds since my hernia surgery. My goal for yesterday was to gain weight for the day and not continue to lose it. Mission accomplished. I put three pounds back on this morning - will have to see if it stays with me tomorrow.
This morning I woke up after my wife left for her Saturday morning long run (eleven miles). I got up and headed out to the canals for a morning walk. I took a chance that the running club would be heading south today and guessed right. I ran into my wife on the canal. I had to walk right in front of her, or she would have just kept running passed me. My energy levels for today have been great. This is the best I have felt in a month. On my walk I was listening to a song by Natasha Bedingfeld called "Happy." The lyrics summed up my morning walk, culminating in the line that, "I have some many beautiful reasons to be happy".
I realize that I am happy, not for the diagnosis, but for the opportunity to grow in my own courage. To accept love from family and friends during this time. I take my life with a little more gratitude, and I celebrate the mundane things that make my life "normal." When you first hear the words that you have cancer, or you could have cancer, you go through many thoughts. You have many fears, but I can say I have come to terms with it. I refuse to live my life consumed with fear. My wife gave me a quote from Eleanor Roosevelt, "You gain strength, courage, and confidence by every experience in which you stop to look fear in the face." I feel much stronger today than I have in the last couple of weeks. Maybe I have looked fear in the face, and I am feeling stronger for it.
Earlier this week I had a power port put into my chest that will help protect my veins during chemotherapy. It is a triangular piece of plastic with a circular membrane that needles can be inserted into through my skin. It has a tail that is put into my jugular vein. It is a little over a half inch thick, so I feel the pressure of it in my chest if I push on it. Once the inflammation goes down I am told I will not notice it much. Right now it hurts if I rub it, bump it, or receive a hug. So if I seem a little gun shy as you come in for a hug, you know why. I also had a bone marrow biopsy done at the same time, which has left a silver dollar sized bruise on the back of my right hip. I was totally out for both of these procedures for which I am extremely grateful.
It has been a little over a week since my first chemo session, and I have to say I have learned a bit. I still have my hair, which may or may not be good. Since I was told I would lose it, I have not wanted to spend the money to get it cut, just to have it fall out. This is the frugal part of me I admit; but if the bank tells you they are coming to take away your truck, the last thing you want to do is go out and get it washed and waxed. I know I will probably experience a lot of the side effects that have been promised. I have seen that these will not necessarily last long, but will come and go with the treatment. I will have highs and lows for the week of the treatment, but if I just take each day as it comes I will get through it. As I get though it. . . I will get stronger.
Thursday, October 15, 2009
Chemo, Round 1 (cue Rocky music. . .)
October 8th, 2009 - First a couple of thoughts about chemotherapy. I never realized that there are no nuclear or radioactive drugs used in chemotherapy; it is chemical therapy. I always figured that the hair loss and stuff was from some radioactive side effect, not a drug and body interaction. Secondly, after living a life for the last couple of years where I am trying to rid my body of toxins and harmful substances (hell, even doing a couple of colon cleanses), here I sit waiting to put very toxic chemicals into my body voluntarily. Now, I have been known to put lots of things into my body that I know are not "good" for me, but at least they're disguised as a cookie, a cheeseburger or slice of cheesecake.
I am ready (and I use this term loosely) to begin my first round of chemo. The chemo they are going to use is a series of four different drugs that someone has given the cool name of CHOP-chemotherapy. In looking over the list of drugs I am to be given there is no H drug. I guess the name of the drug was changed at some point, and it now begins with the letter A. But marketing had already settled on CHOP, so we continue to call it CHOP (though COPA has a nice ring to it.)
I sit in a large room with about 30 recliners in it, each has an IV pole next to it and also a small table in between each chair. As I sit here the room begins to fill up with other patients, not all here for the same treatment, but all here for the same reason. There are about 5 nurses who are busy getting things started with each patient; giving out the drugs. A man down the row from me does not look good. He is wearing oxygen around his side and is in obvious distress. A little later the paramedics arrive and take him away to the hospital across the street. My first session begins about an hour and a half late.
My name is called and one of the nurses who worked with the man who was in distress sits and talks with me. She lets me know what is going to happen; what drugs I am going to be given. One of the drugs is a steroid that I take at home (and had started this morning and will take for 5 straight days) the rest she will give me here now. Two of these are given as a push, where she will sit and push these drugs into my IV. The last one is a drip that is hung on the IV pole and I wait for it to drip into my body. The first push is in two syringes and takes about 15 minutes. The second is much quicker and smaller and takes about 5 seconds. The IV bag is slow. I end my treatment about 3 hours later.
The drugs I am given I am told basically kill all fast growing cells, i.e., the cancer, the hair cells, and the cells inside my mouth. I am advised to bring in some ice or something cold to suck on while I receive the treatments to keep the chemo out of my mouth by using the cold to reduce the blood flow into my mouth. I make a note to be sure to do this. I also notice other people around me who have prepared for this, I feel like such the rookie.
I leave chemo feeling like I have an extreme case of jet lag. There are so many nausea drugs and toxins in my system that I don't feel good, but I can't say what if anything hurts. I feel kind of doped and confused and really, really tired. The tiredness lasts into the next week. I have days where I feel strong, I can walk a mile or two (Saturday), to days when getting out of bed requires too much effort (Sunday). I have a metallic taste in my mouth that makes water taste funky. I have strange tingling in my fingertips. According to the list of side effects, these are to be expected.
During the days after chemo, my wife is fantastic. She has been making sure that I eat good foods. We walk to the mailbox to get the mail, go to the park down the street, and play tile rummy to pass the time. You truly don't get this disease alone; it is a disease that is shared. We trade off having our strong days and our weak days. At least we now know what to expect.
It hits me Sunday night that I only have one more day of chemo drugs to take and it is over. This realization is soon hit with the thought of no, round one is over. I still have many rounds yet to go. This is the marathon I am now running, the first five miles (days) are behind me. I cannot look at all of the miles that lay out in front of me, just take it one mile at a time. . .just one more. . .you can do it. . .it will end.
I am ready (and I use this term loosely) to begin my first round of chemo. The chemo they are going to use is a series of four different drugs that someone has given the cool name of CHOP-chemotherapy. In looking over the list of drugs I am to be given there is no H drug. I guess the name of the drug was changed at some point, and it now begins with the letter A. But marketing had already settled on CHOP, so we continue to call it CHOP (though COPA has a nice ring to it.)
I sit in a large room with about 30 recliners in it, each has an IV pole next to it and also a small table in between each chair. As I sit here the room begins to fill up with other patients, not all here for the same treatment, but all here for the same reason. There are about 5 nurses who are busy getting things started with each patient; giving out the drugs. A man down the row from me does not look good. He is wearing oxygen around his side and is in obvious distress. A little later the paramedics arrive and take him away to the hospital across the street. My first session begins about an hour and a half late.
My name is called and one of the nurses who worked with the man who was in distress sits and talks with me. She lets me know what is going to happen; what drugs I am going to be given. One of the drugs is a steroid that I take at home (and had started this morning and will take for 5 straight days) the rest she will give me here now. Two of these are given as a push, where she will sit and push these drugs into my IV. The last one is a drip that is hung on the IV pole and I wait for it to drip into my body. The first push is in two syringes and takes about 15 minutes. The second is much quicker and smaller and takes about 5 seconds. The IV bag is slow. I end my treatment about 3 hours later.
The drugs I am given I am told basically kill all fast growing cells, i.e., the cancer, the hair cells, and the cells inside my mouth. I am advised to bring in some ice or something cold to suck on while I receive the treatments to keep the chemo out of my mouth by using the cold to reduce the blood flow into my mouth. I make a note to be sure to do this. I also notice other people around me who have prepared for this, I feel like such the rookie.
I leave chemo feeling like I have an extreme case of jet lag. There are so many nausea drugs and toxins in my system that I don't feel good, but I can't say what if anything hurts. I feel kind of doped and confused and really, really tired. The tiredness lasts into the next week. I have days where I feel strong, I can walk a mile or two (Saturday), to days when getting out of bed requires too much effort (Sunday). I have a metallic taste in my mouth that makes water taste funky. I have strange tingling in my fingertips. According to the list of side effects, these are to be expected.
During the days after chemo, my wife is fantastic. She has been making sure that I eat good foods. We walk to the mailbox to get the mail, go to the park down the street, and play tile rummy to pass the time. You truly don't get this disease alone; it is a disease that is shared. We trade off having our strong days and our weak days. At least we now know what to expect.
It hits me Sunday night that I only have one more day of chemo drugs to take and it is over. This realization is soon hit with the thought of no, round one is over. I still have many rounds yet to go. This is the marathon I am now running, the first five miles (days) are behind me. I cannot look at all of the miles that lay out in front of me, just take it one mile at a time. . .just one more. . .you can do it. . .it will end.
Monday, October 12, 2009
Countdown to Chemo
Sunday October 4th, 2009 - I start the week not knowing when things are going to happen, but I know it will be a busy week. I have a visit to the lab on Monday and also a visit to a Naturopathic doctor. I will have a PET/CT scan and a MUGA heart scan also done this week before Thursday. My wife and I go to mass, my energy level is pretty low and it is hard to stand through so I end up sitting through most of it. I spend much of the service in prayer, after the Eucharist (Communion) is served, there is time to just sit in quiet prayer as others are still being served. After mass, I spend a little more time in the prayer chapel. As we are leaving I run into our Priest and let him know what is going on in my life - he asks me if I have been anointed? I tell him no. He takes me and my wife to his office where he anoints me with oil for healing and offers a prayer for my behalf. I leave feeling truly blessed to have been able to make it to mass today, it is the best way to start my week.
Monday Oct 5th, 2009 - My visit to the Naturopathic doctor. My wife and I arrive at the converted house into a doctor's office. I am feeling about an energy level of 3 on a 1 to 10 scale. During this visit I am checked to see what foods are giving me strength and what is making me weak or not serving me well. I also test my blood and find that it is making me weak. Using herbs and vitamins he finds he can counteract the weakness from my lymphoma. He gives me a regiment of supplements to help give me strength. After this the doctor spends a little time resetting my immune system using acupuncture points and a laser pointer. He also uses this hands to do a little prantic healing, it looks very strange, but I leave his office feeling my energy level up to a 6.
Tuesday, Oct 6th 2009 - PET/CT scan. I arrive at the EVID diagnostic center for my PET/CT scan and I am taken back to a room in the very back of the center. There is a chair in the corner with the medical tray next to it to start an IV. After the IV is started, I am left until Patty comes in carrying a metal case. Inside the case is a steel encased syringe that holds a radioactive sugar that is injected into the IV and I am instructed to wait for an hour and then we will do the scan. I am not supposed to move a lot or shiver so the sugar will not enter my muscles but will react with the cancer cells. I end up half napping and waiting for the hour to pass. After this I am taken to the CT machine and a complete body scan is done. I ask if they can see anything, but get the standard response that the radiologist has to read the film and then send it to the doctor. I will have to wait.
Wednesday Oct 7th, 2009 - MUGA heart scan. This scan is a little different in that they are only going to look at my heart and make sure they know what it looks like and how it is working before the Chemo. I get the IV, I get a shot of something and then get to wait a half hour to get another shot. After the half hour I am given the radioactive shot which is in a much smaller steel syringe than yesterday. I then go into the CT room. This machine is more open and I have three different scans done of the heart from different angles, top, half side, full side. Each scan takes about 20 minutes to take, so breath normally and don't move. After it is over I ask about results, I am told that they will get them to the doctor, but again I will have to wait.
I have had a very busy week and at times it did not look like I would be ready, but all falls into place, but am ready for Chemo on Thursday? I don't know what to expect, how I will react, but I have the prayers of so many on my side. I am as ready as I can be. . .
Monday Oct 5th, 2009 - My visit to the Naturopathic doctor. My wife and I arrive at the converted house into a doctor's office. I am feeling about an energy level of 3 on a 1 to 10 scale. During this visit I am checked to see what foods are giving me strength and what is making me weak or not serving me well. I also test my blood and find that it is making me weak. Using herbs and vitamins he finds he can counteract the weakness from my lymphoma. He gives me a regiment of supplements to help give me strength. After this the doctor spends a little time resetting my immune system using acupuncture points and a laser pointer. He also uses this hands to do a little prantic healing, it looks very strange, but I leave his office feeling my energy level up to a 6.
Tuesday, Oct 6th 2009 - PET/CT scan. I arrive at the EVID diagnostic center for my PET/CT scan and I am taken back to a room in the very back of the center. There is a chair in the corner with the medical tray next to it to start an IV. After the IV is started, I am left until Patty comes in carrying a metal case. Inside the case is a steel encased syringe that holds a radioactive sugar that is injected into the IV and I am instructed to wait for an hour and then we will do the scan. I am not supposed to move a lot or shiver so the sugar will not enter my muscles but will react with the cancer cells. I end up half napping and waiting for the hour to pass. After this I am taken to the CT machine and a complete body scan is done. I ask if they can see anything, but get the standard response that the radiologist has to read the film and then send it to the doctor. I will have to wait.
Wednesday Oct 7th, 2009 - MUGA heart scan. This scan is a little different in that they are only going to look at my heart and make sure they know what it looks like and how it is working before the Chemo. I get the IV, I get a shot of something and then get to wait a half hour to get another shot. After the half hour I am given the radioactive shot which is in a much smaller steel syringe than yesterday. I then go into the CT room. This machine is more open and I have three different scans done of the heart from different angles, top, half side, full side. Each scan takes about 20 minutes to take, so breath normally and don't move. After it is over I ask about results, I am told that they will get them to the doctor, but again I will have to wait.
I have had a very busy week and at times it did not look like I would be ready, but all falls into place, but am ready for Chemo on Thursday? I don't know what to expect, how I will react, but I have the prayers of so many on my side. I am as ready as I can be. . .
Friday, October 9, 2009
September - the month, the change, the news. . .
Sept 12, 2009- My wife and I had joined up with a running group this year to meet other runners and in my wife's case to have a back-up plan in case I got injured. We meet every Saturday morning at 6:00am at Freestone park, get some advice and then head off for runs of various lengths (5 mi, 6 mi, etc). Well this fine Saturday morning the marathon runners were going out for 7 miles, after we had a nice discussion about nutrition and running. I being a slow runner ended up bringing in the rear this day, but I was able to run most all of the 7 miles and felt really good. After the run while taking a shower I noticed a small lump just above my right leg that was sore to the touch. Thinking I had pulled something in my hip flexor, I iced the spot, and then when with my son to the "Y" to lift weights.
Sept 16th, 2009 - the lump in the abdomen is not going away, and in fact I can feel it pull when I ran on Monday night and also on Tuesday morning. I am now realizing I probably have a hernia (after 5 year of running?), I make plans to call the doctor on Friday as Thursday I am taking a day trip up to the rim. I start to run a fever that night, and decide I will call the doctor as soon as I am back from the rim, maybe I can see him late afternoon on Thursday. That night I have my first bout of night sweats. Now I have sweated during the night living in Arizona, but this is soak the pillow, feel like you are sleeping in a water bed with a leak, kind of sweats (something I am very familiar with since I did have a water bed and cats in my early marriage and woke up many times drenched because the cats punchered the bed - always on my side.)
Sept 18th, 2009 - I get in to see my doctor at 9:15am Friday morning, his office is closed on Thursday afternoons so this is the earliest I could get in here. He looks at my lump, does the whole poking around - the turn your head and cough - test and says, yes I think it's a hernia. I will set you up with a surgeon. I leave his office and head to the surgeon's office and am seen right away. He does his tests (the turn and cough lines) and says it looks like a hernia, we can wait a bit - how is Monday? I think well if we do it Saturday, my wife will not need to miss work, I will have the weekend to recover - I suggest this, he agrees and we are set to have hernia surgery on Saturday Sept 19th. I then run to the hospital, get blood drawn and an EKG test, do all of my pre-op calls. Call family and wait for Saturday morning to arrive.
Sept 19th, 2009 - hernia surgery - can't tell you allot about it, as I thankfully slept through it. Surgeon tells my wife that in doing the surgery there are some enlarged lymph nodes that he took out that did not look right. I wake up having to pee, but am unable to stop shivering from the anaesthetic, I cannot relax enough to go. I finally dribble a little and say, let's go home. We continue to have problems and end up back in the ER at 6:30 that night where I meet my new friend "the Catheter". We become quite close, he stays with me where ever I go (pun intended.) I find out that I had about 1.7 liters of full bladder, which is not a record, but is my personal best. I return home with my new found friend and continue with the night sweats.
Sept 23rd, 2009 - Surgeon's Office, we arrive expecting to meet with the physician's assistant to have my friend "Mr. Catheter" removed, but are instead greeted by the surgeon. He checks my hernia site, still too much swelling, but looking good. Takes out my friend, an altogether strange experience and tells me to have a seat. He then tells us that something is wrong with the lymph nodes that were around the hernia site, he is not sure, but they could be cancerous and they are sending them out for a second opinion. I may or may not have some form of Lymphoma. He will know for sure in a week. I tell him of my fever that comes on in the late day and the night sweats. He tells me to keep getting up and walking, but he doesn't think this is from the surgery. Take it easy and he will get back to us.
Oct 1st, 2009 - After a little over a week, I receive a call from my surgeon. It is definitely Lymphoma, do I have an oncologist? No I tell him, no one in my immediate family has ever had need of one. He can recommend someone to me, I tell him to send me to whoever he would go to, or send his family to see. He tells me that his office will set up an appointment for me and call me later in the week. This is Thursday at 1:30pm, there is not much week left. I call my wife with the update, we agree to meet and call our boys and parents.
Oct 2nd, 2009 - 9:30am, I receive a call from the surgeon's assistant, Misty. She tells me I am meeting with my oncologist at 2:00pm that afternoon, please get there a half hour early to fill out paperwork. I call my wife, let her know what is going on and we meet and get there on time. After a wait, we meet with our oncologist who lets us know I have a rare form of lymphoma, an Anaplastic Large Cell Lymphoma, that is very aggressive, but is also very treatable. We will start chemotherapy the following Thursday, after using Monday to Wednesday to get preliminary and baseline tests and blood work done. We meet with the nurses who will be doing our chemotherapy - they give us plenty of reading material to go over, they pull out a calender that will record our next couple of months. Chemo every three weeks, drugs to take on what days, lab visits to do before and after treatment, it is overwhelming, but it is written down so we have a map of how our lives will be for the next two months. In a little under two weeks I have gone from hernia surgery, to cancer patient. In a little over three weeks I have gone from marathon training, to not being sure what I will be able to do. . .
My wife was right to join the running club, she continues to train for the marathon, and I intend to train for the half. If I can run it, she is going to drop down and run it with me. This will be the fifth time I have ran the PF Cheng's marathon (3) or half marathon (1), but it will be the first time I do this as a cancer survivor. . . you are never ready to hear this news. I share this to let you know how quickly life changes. What is important today, may not be so important tomorrow. Life is short, don't waste it. Trust in God and lace up the shoes, the fight is not easy. . .but then neither is running.
Sept 16th, 2009 - the lump in the abdomen is not going away, and in fact I can feel it pull when I ran on Monday night and also on Tuesday morning. I am now realizing I probably have a hernia (after 5 year of running?), I make plans to call the doctor on Friday as Thursday I am taking a day trip up to the rim. I start to run a fever that night, and decide I will call the doctor as soon as I am back from the rim, maybe I can see him late afternoon on Thursday. That night I have my first bout of night sweats. Now I have sweated during the night living in Arizona, but this is soak the pillow, feel like you are sleeping in a water bed with a leak, kind of sweats (something I am very familiar with since I did have a water bed and cats in my early marriage and woke up many times drenched because the cats punchered the bed - always on my side.)
Sept 18th, 2009 - I get in to see my doctor at 9:15am Friday morning, his office is closed on Thursday afternoons so this is the earliest I could get in here. He looks at my lump, does the whole poking around - the turn your head and cough - test and says, yes I think it's a hernia. I will set you up with a surgeon. I leave his office and head to the surgeon's office and am seen right away. He does his tests (the turn and cough lines) and says it looks like a hernia, we can wait a bit - how is Monday? I think well if we do it Saturday, my wife will not need to miss work, I will have the weekend to recover - I suggest this, he agrees and we are set to have hernia surgery on Saturday Sept 19th. I then run to the hospital, get blood drawn and an EKG test, do all of my pre-op calls. Call family and wait for Saturday morning to arrive.
Sept 19th, 2009 - hernia surgery - can't tell you allot about it, as I thankfully slept through it. Surgeon tells my wife that in doing the surgery there are some enlarged lymph nodes that he took out that did not look right. I wake up having to pee, but am unable to stop shivering from the anaesthetic, I cannot relax enough to go. I finally dribble a little and say, let's go home. We continue to have problems and end up back in the ER at 6:30 that night where I meet my new friend "the Catheter". We become quite close, he stays with me where ever I go (pun intended.) I find out that I had about 1.7 liters of full bladder, which is not a record, but is my personal best. I return home with my new found friend and continue with the night sweats.
Sept 23rd, 2009 - Surgeon's Office, we arrive expecting to meet with the physician's assistant to have my friend "Mr. Catheter" removed, but are instead greeted by the surgeon. He checks my hernia site, still too much swelling, but looking good. Takes out my friend, an altogether strange experience and tells me to have a seat. He then tells us that something is wrong with the lymph nodes that were around the hernia site, he is not sure, but they could be cancerous and they are sending them out for a second opinion. I may or may not have some form of Lymphoma. He will know for sure in a week. I tell him of my fever that comes on in the late day and the night sweats. He tells me to keep getting up and walking, but he doesn't think this is from the surgery. Take it easy and he will get back to us.
Oct 1st, 2009 - After a little over a week, I receive a call from my surgeon. It is definitely Lymphoma, do I have an oncologist? No I tell him, no one in my immediate family has ever had need of one. He can recommend someone to me, I tell him to send me to whoever he would go to, or send his family to see. He tells me that his office will set up an appointment for me and call me later in the week. This is Thursday at 1:30pm, there is not much week left. I call my wife with the update, we agree to meet and call our boys and parents.
Oct 2nd, 2009 - 9:30am, I receive a call from the surgeon's assistant, Misty. She tells me I am meeting with my oncologist at 2:00pm that afternoon, please get there a half hour early to fill out paperwork. I call my wife, let her know what is going on and we meet and get there on time. After a wait, we meet with our oncologist who lets us know I have a rare form of lymphoma, an Anaplastic Large Cell Lymphoma, that is very aggressive, but is also very treatable. We will start chemotherapy the following Thursday, after using Monday to Wednesday to get preliminary and baseline tests and blood work done. We meet with the nurses who will be doing our chemotherapy - they give us plenty of reading material to go over, they pull out a calender that will record our next couple of months. Chemo every three weeks, drugs to take on what days, lab visits to do before and after treatment, it is overwhelming, but it is written down so we have a map of how our lives will be for the next two months. In a little under two weeks I have gone from hernia surgery, to cancer patient. In a little over three weeks I have gone from marathon training, to not being sure what I will be able to do. . .
My wife was right to join the running club, she continues to train for the marathon, and I intend to train for the half. If I can run it, she is going to drop down and run it with me. This will be the fifth time I have ran the PF Cheng's marathon (3) or half marathon (1), but it will be the first time I do this as a cancer survivor. . . you are never ready to hear this news. I share this to let you know how quickly life changes. What is important today, may not be so important tomorrow. Life is short, don't waste it. Trust in God and lace up the shoes, the fight is not easy. . .but then neither is running.
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