A couple weeks ago, Maria found out that the Leukemia & Lymphoma Society would be holding its annual Light The Night Walk in September. We decided right away that we would do the walk and try to raise some money. I didn't think about it much after that until last week, when I had lunch with Jada and asked her to join our team. Of course, being the friend that she is, said "yes" immediately. I probably could have asked her to do something crazy, like swimming with piranhas for charity, and she would have still said "yes." (Thanks Jada!)
So yesterday, while sitting around, taking it easy after my most recent treatment, I finally got around to typing up an email to all our friends and family, asking them to join the team and/or donate. I also talked to my mom to see if she and my step-dad Cameron would walk with us.
Now, less than 24 hours later, several people have joined our team and they have already raised $130! That's pretty awesome. Also, I am not the only person directly affected by Hodgkin's Lymphoma on our team. Rebecca, a friend/former co-worker battled Hodgkin's twelve years ago and is doing great after all these years! Sarah was diagnosed with Hodgkin's in February. Her most recent scan came back cancer-free (yay!) and now she is just finishing up her course of chemotherapy. Since Sarah was ahead of me in her diagnosis and treatments, she was able to answer questions I had and let me know that what I was experiencing was "normal." I am so glad they have both signed up for the walk and are already raising money!
Maria is planning on doing some fundraising at work, while I need to think of things I can do from home this summer to raise money. Since I'm stuck in the house most of the time, I've given myself a small goal of raising $50.00, although more would be nice!
With that in mind, I'm asking all my friends and family reading this blog to consider donating to this worthwhile cause. It doesn't have to be much, especially in this rough economy, but any little bit helps.
You can donate cash or checks to me directly or use a credit/debit card online here.
If you would like to join the team and walk with us, you can do so here.
Thanks for reading and I plan to update this blog with our team's progress periodically.
Tuesday, July 28, 2009
Sunday, July 26, 2009
I hate this port
For the second time in a row, the lab tech at the hospital had trouble with my port. She stuck the needle in me but couldn't get it to do what it needed to do. She got a nurse to come help her and they ended up pulling the first needle out, pressed on my clavicle somewhat to make the port move a bit, and stuck me with another needle. At least the second one worked. I explained to the nurse how there was trouble last time as well, including abnormal bleeding after my treatment. She knew the bleeding was unusual but didn't know for sure why that would have happened. I really hope they don't have issues every time. I know the port makes administering the chemo easier, but I really do hate it. I think about it constantly. I can't get comfortable at times because of it, I feel it under my skin and I swear, even inside me. I just want it gone, but I will make it through this.
After the blood draws were taken, Maria and I went to the day hospital to check in for my chemo. We were about 15-20 minutes early, but we didn't have anything else to do. My chemo was scheduled for 2:30pm. Around 3:00pm I went up to the reception desk to find out what the hold up was. Apparently my lab results showed something that was making them wait to find out if they could even give me the chemo that day. Of course this was concerning. What if they didn't give me the chemo? Would I have to come back the next day to try again? Would I have to keep trying everyday until my lab results showed it was OK to proceed? Finally around 3:30pm I overheard someone (a nurse maybe?) on the phone asking if they could get started on my treatment. The day hospital waiting room was nearly empty by this time. I overheard that they were given the OK to proceed by Julie, the nurse practitioner that works with my oncologist. The nurse administering my chemo told me that my white blood cell counts were lower than they would have liked, however, I had previously been given chemo when the counts were even lower. Maria and I finally left the hospital around 6:00pm. It was a long day.
So far, the side effects seem to be happening as they normally do. On both Friday and Saturday, nothing tasted normal or good, especially beverages. I don't really love water, but that's what I've been drinking because juice and soda all tasted terrible to me. I've also been pretty tired, lying around and napping for most of Saturday and today. I can feel my mouth starting to hurt as well. I just have to remember, by Wednesday - maybe Thursday - most of this will be over and I'll be feeling fairly normal again. Until next week of course.
After the blood draws were taken, Maria and I went to the day hospital to check in for my chemo. We were about 15-20 minutes early, but we didn't have anything else to do. My chemo was scheduled for 2:30pm. Around 3:00pm I went up to the reception desk to find out what the hold up was. Apparently my lab results showed something that was making them wait to find out if they could even give me the chemo that day. Of course this was concerning. What if they didn't give me the chemo? Would I have to come back the next day to try again? Would I have to keep trying everyday until my lab results showed it was OK to proceed? Finally around 3:30pm I overheard someone (a nurse maybe?) on the phone asking if they could get started on my treatment. The day hospital waiting room was nearly empty by this time. I overheard that they were given the OK to proceed by Julie, the nurse practitioner that works with my oncologist. The nurse administering my chemo told me that my white blood cell counts were lower than they would have liked, however, I had previously been given chemo when the counts were even lower. Maria and I finally left the hospital around 6:00pm. It was a long day.
So far, the side effects seem to be happening as they normally do. On both Friday and Saturday, nothing tasted normal or good, especially beverages. I don't really love water, but that's what I've been drinking because juice and soda all tasted terrible to me. I've also been pretty tired, lying around and napping for most of Saturday and today. I can feel my mouth starting to hurt as well. I just have to remember, by Wednesday - maybe Thursday - most of this will be over and I'll be feeling fairly normal again. Until next week of course.
Thursday, July 23, 2009
Numero cuatro
This afternoon I will be receiving my fourth chemotherapy treatment. I can't say that I've been looking forward to it. I never look forward to treatment days. I know it's helping me, but it's just the thought of all those chemicals going into me and the following week of various side effects, that make me dread treatment days. I wish this was all over. Sometimes it does seem to be going fast. After today, I'm pretty much halfway done with chemo treatments (as far as I know). The PET scan that I get before my next treatment will help the oncologist determine how much longer I'll need chemotherapy.
Next week will be two months since I found out I had cancer. Like many have already told me, getting downsized earlier this year really is a blessing in disguise. I've spoken to several of my former co-workers and things just sound insane there. I don't think working in that stressful of an environment would be good for me. So although I get bored a lot just sitting at home with no job, no one to talk to, and nothing interesting to do (or the energy to do it some days), at least I don't have that to deal with. Maybe by the time I'm done with all this in September/October *crosses fingers*, the job market will have improved some and I can find a good job, hopefully in the marketing arena, that maybe even offers tuition reimbursement. That would be ideal anyways.
Next week will be two months since I found out I had cancer. Like many have already told me, getting downsized earlier this year really is a blessing in disguise. I've spoken to several of my former co-workers and things just sound insane there. I don't think working in that stressful of an environment would be good for me. So although I get bored a lot just sitting at home with no job, no one to talk to, and nothing interesting to do (or the energy to do it some days), at least I don't have that to deal with. Maybe by the time I'm done with all this in September/October *crosses fingers*, the job market will have improved some and I can find a good job, hopefully in the marketing arena, that maybe even offers tuition reimbursement. That would be ideal anyways.
Tuesday, July 14, 2009
Band-aids and popsicles
At my treatment on Thursday, I saw my oncologist, Dr. Fenske and his nurse, Julie again. Julie asked all sorts of questions and I told her about all the different side effects/pains/feelings I had after each of the first two treatments. Nothing I told them about seemed to concern them, which I'll take as good. The doctor suggested I take the lorazepam they prescribed me for nausea for those nights when I'm feeling anxiety and having a hard time falling asleep since it will help any of those issue. They also said my lab tests looked good (liver, electrolytes, etc.). Of course my white blood cell counts were low, but that's expected. They seemed really happy that they could not visually see the cancer in my neck anymore and were also surpised that I still have a whole head of hair. I see them again in a month. I will have one more treatment and a PET scan before then, which will help them determine the progress of the cancer and chemo. I'm really hoping that the chemo will work on me so well that I won't have to have radiation therapy. If I need to, I of course will get it, but I really hope I won't need it.
I did have an issue after the chemo that freaked me out. Normally after the chemo, they put a band-aid over my port where the needle went in. Usually there is no blood or maybe one dot only. Well this time there was plenty of blood. The pad on the band-aid was soaked in blood and my undershirt had quite a bit soaked in as well. It wasn't bleeding anymore but I knew it wasn't normal. I worried the nurse that administered the chemo didn't do something right to "close up" the port or something. I also figured it could have been because of the nurse that put the needle in the port that morning. She missed the right spot and couldn't get blood to return, so she had to rearrange the needle inside my port a few times until the blood flowed. I called the hospital and an on-call doctor contacted me. He said to clean it up and bandage it. If it stopped bleeding then I was OK. If it keeps bleeding more than a little, then I would have to go to the ER because something is wrong. Well, it never bled again, so I just stayed home and hoped for the best. I thought about calling my doctor's office the next day for peace of mind but didn't. That's so unlike me.
This latest chemo treatment has really been taking it's toll on me. The first two days, which included my birthday on Saturday, were OK but not great. Like last time, my taste buds were extremely off. Nothing tasted right, or good for that matter. I drank mostly water those days because nothing else tasted good. Eating was hit or miss. Things didn't taste bad necessarily, just different and very mild. The main flavor I seemed to be able to taste was salt, so I'm sure I added more salt to things than necessary.
I also started feeling tired out sooner than I did before. After my first two chemo sessions, I started feeling tired on Sunday. This time, I already started feeling it a bit on Friday and for sure on Saturday. On Friday, I was already yawning by 8:00pm but we still went over by Kime & Frank's house and hung out with them and Sacha & Mark. I had a good time - it's nice when I can be out of our house, even if only to be at somebody else's house. On Saturday I slept in and then also took a nap in the early afternoon. I was really feeling tired. My dad, sister and nephew came over to visit for my birthday. We just sat outside in the nice weather and also played a game of ladderball. It was especially nice to see my nephew, since he is now 2 years old and I've only seen him one other time in the last year and a half. It's weird being called "Uncle Mike" because I'm so used to my cousins calling my dad that. Maria's nieces generally just call me "Mikey," although they know that I'm their uncle. Later on after everyone left, my mom and step-dad came over to grill out. I'm sure I was yawning all night, but still had a good time. I ate a small piece of grilled chicken, a huge grilled baked potato and some corn. The potato and corn really tasted good to me, even though I'm sure it was the extra salt I was mostly tasting.
Sunday and Monday were mostly spent with me lying around on the couch, watching TV and occasionally falling asleep. I just didn't feel up to doing anything. I felt the normal "chemo pain" in my body, although still milder than after my first treatment. I was also having really bad mouth pain. One of the side effects of the chemo is mouth sores because of the types cells the chemo kills. I can combat the pain by eating cold things like popsicles, but it still really hurt this time. I don't think I have any actual sores, just pain from the chemo.
Today, I was hoping to feel better than I do. I figured since the side effects started earlier, they might end earlier. While the mouth pain today is minimal compared to the last few days, I'm still really tired and run-down feeling. I knew I had to get to the store for a few basics like milk and bread, so that was my goal today. It took all the effort I had to get dressed and ready to go. At the store, it was really hard to walk around and push the cart. Although I was only there maybe 15 minutes, I had no energy to shop. I'm sure I was walking around at the pace of an elderly person. By the time I got home from the store, I was feeling exhausted. You would think I just ran a marathon. Even sitting here typing this blog post is a challenge. I keep taking short breaks from typing where I just sit back and sit still.
I have class tomorrow night, the first class of my last six-week course for my degree. I really wish it was over already. I already have homework due tomorrow that I haven't yet started. I just haven't been in the mood for school since this whole cancer ordeal began. At least the end is in sight for school, just not quick enough.
I did have an issue after the chemo that freaked me out. Normally after the chemo, they put a band-aid over my port where the needle went in. Usually there is no blood or maybe one dot only. Well this time there was plenty of blood. The pad on the band-aid was soaked in blood and my undershirt had quite a bit soaked in as well. It wasn't bleeding anymore but I knew it wasn't normal. I worried the nurse that administered the chemo didn't do something right to "close up" the port or something. I also figured it could have been because of the nurse that put the needle in the port that morning. She missed the right spot and couldn't get blood to return, so she had to rearrange the needle inside my port a few times until the blood flowed. I called the hospital and an on-call doctor contacted me. He said to clean it up and bandage it. If it stopped bleeding then I was OK. If it keeps bleeding more than a little, then I would have to go to the ER because something is wrong. Well, it never bled again, so I just stayed home and hoped for the best. I thought about calling my doctor's office the next day for peace of mind but didn't. That's so unlike me.
This latest chemo treatment has really been taking it's toll on me. The first two days, which included my birthday on Saturday, were OK but not great. Like last time, my taste buds were extremely off. Nothing tasted right, or good for that matter. I drank mostly water those days because nothing else tasted good. Eating was hit or miss. Things didn't taste bad necessarily, just different and very mild. The main flavor I seemed to be able to taste was salt, so I'm sure I added more salt to things than necessary.
I also started feeling tired out sooner than I did before. After my first two chemo sessions, I started feeling tired on Sunday. This time, I already started feeling it a bit on Friday and for sure on Saturday. On Friday, I was already yawning by 8:00pm but we still went over by Kime & Frank's house and hung out with them and Sacha & Mark. I had a good time - it's nice when I can be out of our house, even if only to be at somebody else's house. On Saturday I slept in and then also took a nap in the early afternoon. I was really feeling tired. My dad, sister and nephew came over to visit for my birthday. We just sat outside in the nice weather and also played a game of ladderball. It was especially nice to see my nephew, since he is now 2 years old and I've only seen him one other time in the last year and a half. It's weird being called "Uncle Mike" because I'm so used to my cousins calling my dad that. Maria's nieces generally just call me "Mikey," although they know that I'm their uncle. Later on after everyone left, my mom and step-dad came over to grill out. I'm sure I was yawning all night, but still had a good time. I ate a small piece of grilled chicken, a huge grilled baked potato and some corn. The potato and corn really tasted good to me, even though I'm sure it was the extra salt I was mostly tasting.
Sunday and Monday were mostly spent with me lying around on the couch, watching TV and occasionally falling asleep. I just didn't feel up to doing anything. I felt the normal "chemo pain" in my body, although still milder than after my first treatment. I was also having really bad mouth pain. One of the side effects of the chemo is mouth sores because of the types cells the chemo kills. I can combat the pain by eating cold things like popsicles, but it still really hurt this time. I don't think I have any actual sores, just pain from the chemo.
Today, I was hoping to feel better than I do. I figured since the side effects started earlier, they might end earlier. While the mouth pain today is minimal compared to the last few days, I'm still really tired and run-down feeling. I knew I had to get to the store for a few basics like milk and bread, so that was my goal today. It took all the effort I had to get dressed and ready to go. At the store, it was really hard to walk around and push the cart. Although I was only there maybe 15 minutes, I had no energy to shop. I'm sure I was walking around at the pace of an elderly person. By the time I got home from the store, I was feeling exhausted. You would think I just ran a marathon. Even sitting here typing this blog post is a challenge. I keep taking short breaks from typing where I just sit back and sit still.
I have class tomorrow night, the first class of my last six-week course for my degree. I really wish it was over already. I already have homework due tomorrow that I haven't yet started. I just haven't been in the mood for school since this whole cancer ordeal began. At least the end is in sight for school, just not quick enough.
Wednesday, July 8, 2009
The sky is falling! Actually it's just my hair.
So yeah, last week my hair started falling out. I noticed around Tuesday or Wednesday. When I wash, dry or style my hair, I end up with tons of individual strands all over my hands, the sink, the towel, etc. I'm not sure yet what I'm going to do about it. I actually don't mind the fact that I'm losing my hair as much as I thought I would. I guess because I knew it would most likely happen. I also look at it as a normal part of the chemo process. Since my hair is falling out, the chemo must be working. The main bad part is just that it's messy. As mentioned, the hair gets everywhere, so that's annoying.
I'm not a hat guy. I never wear hats, not even baseball caps. I've always been one of those guys that spends more time making his hair look good than others. I guess growing up with a hair stylist mom did that to me. But I don't know what I would look like with no hair. I have a large head so I can't picture a shaved or bald head looking all that sexy, so I have a hat all picked out in the event I lose too much and shave the rest off. I'm at the point where I'm overdue for a haircut. I'm trying to decide if I should have it cut like normal and see what happens, or if I should just get rid of it now. The doctor said I may not lose all my hair, but it may just thin out some. I'll probably try to keep it as long as possible, so maybe I'll get a haircut on Friday.
Other than the hair thing, the last five days or so have been pretty good. I've felt like myself, no real pain or side effects, just all around good. We had a fun 4th of July BBQ with some good friends. I still get worried at night and have trouble falling asleep some nights, but the days have been really good.
Tomorrow is my 3rd treatment. I also get to see my oncologist tomorrow, which I'm happy about because I haven't seen him since the week before my 1st treatment when he told me I was stage 1A and laid out the treatment plan.
My 31st birthday is Saturday. No big plans for going out this year, just taking it easy at home after my treatment. My mom and step-dad are coming over to grill out and have promised to do all the prep and cooking. That will be nice. :)
I'm not a hat guy. I never wear hats, not even baseball caps. I've always been one of those guys that spends more time making his hair look good than others. I guess growing up with a hair stylist mom did that to me. But I don't know what I would look like with no hair. I have a large head so I can't picture a shaved or bald head looking all that sexy, so I have a hat all picked out in the event I lose too much and shave the rest off. I'm at the point where I'm overdue for a haircut. I'm trying to decide if I should have it cut like normal and see what happens, or if I should just get rid of it now. The doctor said I may not lose all my hair, but it may just thin out some. I'll probably try to keep it as long as possible, so maybe I'll get a haircut on Friday.
Other than the hair thing, the last five days or so have been pretty good. I've felt like myself, no real pain or side effects, just all around good. We had a fun 4th of July BBQ with some good friends. I still get worried at night and have trouble falling asleep some nights, but the days have been really good.
Tomorrow is my 3rd treatment. I also get to see my oncologist tomorrow, which I'm happy about because I haven't seen him since the week before my 1st treatment when he told me I was stage 1A and laid out the treatment plan.
My 31st birthday is Saturday. No big plans for going out this year, just taking it easy at home after my treatment. My mom and step-dad are coming over to grill out and have promised to do all the prep and cooking. That will be nice. :)
Friday, July 3, 2009
Love this...
My friend Kristen sent me this humorous cancer related quote by Dr. Jerri Nielsen:
"I would rather not have it, but the cancer is part of me. It's given my life color and texture. Everyone has to get something. Some people are ugly, some people are stupid. I get cancer."
"I would rather not have it, but the cancer is part of me. It's given my life color and texture. Everyone has to get something. Some people are ugly, some people are stupid. I get cancer."
Thursday, July 2, 2009
It's 3am... I wish I was asleep...
Yes, I'm really blogging at 3am. I've been meaning to post an update for a couple days now but haven't, so since I was up anyways, I figured I might as well go for it.
So far, the effects of my second chemo treatment have been milder than the first. For the first day or two, I felt fine but I noticed my taste buds were completely off. Nothing I ate or drank tasted normal. For example, I made a pitcher of kool-aid that was very sweet to Maria but I thought just tasted OK. Things that should have been salty or garlicky just tasted bland to me, like they were underseasoned.
Sunday was my tired day again, spent laying around most of the day. Monday too pretty much. I also started to feel a bit of the chemo pains that I experienced last time. I was dreading Wednesday since the Wednesday after my first chemo was one of the worst days of my life pain wise.
Tuesday and Wednesday (yesterday now) I was less tired but more run down feeling. I could feel the chemo pains more but they never got horrible or unbearable, just uncomfortable at times. I think Tuesday was worse pain wise, but still so much milder than the last time. I'm hoping that's a sign that future treatments won't be so painful. The run down feeling has been worrying me because it sort of feels like when you are getting a cold. You know it's coming and there is nothing you can do to stop it. That's how I've felt for a few days now, but really no other symptom of getting a cold. I really need to do my best to avoid getting sick while going through the chemo treatments since my body will not be able to fight off an infection like normal.
That brings me to why I'm awake and blogging at 3am. Well, there is one side effect I haven't wrote about yet because it's probably a bit TMI (too much information) for most people, and not something I normally talk about to friends and family. STOP READING HERE if you really don't want to know about the effects chemo can have on one's ability to go to the bathroom, specifically what I've been experiencing.
Unfortunately the chemo seems to affect a person's bathroom routine drastically and I have been no exception. The first couple days after treatment not much happens in the #2 department for me. I feel the need to go, but it just doesn't happen. Every so often a tumbleweed passes by me. After a few days, the exact opposite happens and I am in and out of the bathroom so often that my mail starts getting delivered there! Eventually things start to go back to normal and then it starts all over again after the next treatment. So things were finally getting back to normal in that department, but I think the stir-fry I ate for dinner last night did not agree with me and I've been making frequent runs to the restroom ever since. I think I fell asleep for a little bit tonight but woke up hot and sweaty and also had to go to the bathroom again. Since I need to make sure I don't have a fever, I check my temperature everyday. The fact that I was hot and had an upset stomach coupled with frequent trips to the potty was concerning to me. I checked my temperature using an ear thermometer, that I'm convinced is never accurate, and it kept coming back in the low 97 degrees, even upper 96 degrees, but somewhat different each time. That seemed low and freaked me out, so I knew I needed to be more accurate and came downstairs to get the oral thermometer. I decided to post this update while waiting for the results. 97.3 and 97.5 degrees were the results of the two checks using the oral thermometer. A bit lower than usual, but it is a bit chilly in here being the middle of the night and all. WebMD says 97 (I'm assuming 97.0) or lower is hypothermia, so I hope I don't go any lower. I definitely don't have a fever which is good. Now that I'm done with this update, I'm going to attempt to go back to bed. Hopefully I can fall asleep as its now 3:52am and I'm tired.
So far, the effects of my second chemo treatment have been milder than the first. For the first day or two, I felt fine but I noticed my taste buds were completely off. Nothing I ate or drank tasted normal. For example, I made a pitcher of kool-aid that was very sweet to Maria but I thought just tasted OK. Things that should have been salty or garlicky just tasted bland to me, like they were underseasoned.
Sunday was my tired day again, spent laying around most of the day. Monday too pretty much. I also started to feel a bit of the chemo pains that I experienced last time. I was dreading Wednesday since the Wednesday after my first chemo was one of the worst days of my life pain wise.
Tuesday and Wednesday (yesterday now) I was less tired but more run down feeling. I could feel the chemo pains more but they never got horrible or unbearable, just uncomfortable at times. I think Tuesday was worse pain wise, but still so much milder than the last time. I'm hoping that's a sign that future treatments won't be so painful. The run down feeling has been worrying me because it sort of feels like when you are getting a cold. You know it's coming and there is nothing you can do to stop it. That's how I've felt for a few days now, but really no other symptom of getting a cold. I really need to do my best to avoid getting sick while going through the chemo treatments since my body will not be able to fight off an infection like normal.
That brings me to why I'm awake and blogging at 3am. Well, there is one side effect I haven't wrote about yet because it's probably a bit TMI (too much information) for most people, and not something I normally talk about to friends and family. STOP READING HERE if you really don't want to know about the effects chemo can have on one's ability to go to the bathroom, specifically what I've been experiencing.
Unfortunately the chemo seems to affect a person's bathroom routine drastically and I have been no exception. The first couple days after treatment not much happens in the #2 department for me. I feel the need to go, but it just doesn't happen. Every so often a tumbleweed passes by me. After a few days, the exact opposite happens and I am in and out of the bathroom so often that my mail starts getting delivered there! Eventually things start to go back to normal and then it starts all over again after the next treatment. So things were finally getting back to normal in that department, but I think the stir-fry I ate for dinner last night did not agree with me and I've been making frequent runs to the restroom ever since. I think I fell asleep for a little bit tonight but woke up hot and sweaty and also had to go to the bathroom again. Since I need to make sure I don't have a fever, I check my temperature everyday. The fact that I was hot and had an upset stomach coupled with frequent trips to the potty was concerning to me. I checked my temperature using an ear thermometer, that I'm convinced is never accurate, and it kept coming back in the low 97 degrees, even upper 96 degrees, but somewhat different each time. That seemed low and freaked me out, so I knew I needed to be more accurate and came downstairs to get the oral thermometer. I decided to post this update while waiting for the results. 97.3 and 97.5 degrees were the results of the two checks using the oral thermometer. A bit lower than usual, but it is a bit chilly in here being the middle of the night and all. WebMD says 97 (I'm assuming 97.0) or lower is hypothermia, so I hope I don't go any lower. I definitely don't have a fever which is good. Now that I'm done with this update, I'm going to attempt to go back to bed. Hopefully I can fall asleep as its now 3:52am and I'm tired.
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