At 1:30 PM this past Sunday, I walked out of Beth Israel Medical Center having have a chemotherapy pump disconnected for the last time. I hope.
Ladies and gentlemen, the main round of chemotherapy is done. The routine of every other Friday being spent in a pink chair reclined while the drugs are being poured into my system are done. So that's that right?
Yeah, not that easy.
The chemotherapy did its dirty work. I don't have any clue about how big the tumor is anymore but the pain I had when this all started is completely gone, and I haven't taken any nerve medicine for about a month now. That's the good news, but with every bit of good there's some bad. This past round saw the neuropathy last the entire time, that's probably the biggest bullet point from this last round. Even on the day that I was headed in for the last time, I tried holding something from the fridge and got the shock/numbing sensation to go up my fingers. I was at least able to DRINK something cold, but the cold that's come around this time around has hit me like an electrical field. The last few days have been fun as the cold wind has hit my face and actually caused both the nose and the ears to get zapped.
I should consider myself lucky, all of these effects are ones that hit people harder and more sudden. I just had to put up with the worst of it at the end. Oh, the fatigue hasn't been great, either. The New Year's holiday spoiled me after the last treatment, as I was able to take four days after the main treatment and two days from the pump disconnect to fully recover. This time around I tried hitting the ground again on Monday at work, but I ended up leaving early as a general air of fatigue hit me. It's tough to explain what that does to you. It's more than just "being tired." It's a general air of being unfocused. The only thing that feels really good is just laying down and stretching out. When I tried to do anything else, my body basically fought it and tried dragging me back to the couch or the bed. Finally, after trying to fight the good fight, I took a lorazepam and laid myself down to completely knock myself out. The good news: on Tuesday (yesterday) I felt 100% better, and I feel better today, too.
It's a good thing I was feeling better today because we had an important appointment to get to: the radiation oncologist. Yes, folks, that's the next wall to scale. The actual appointment didn't take long, going over the side effects which...yay...include fatigue. After a discussion with the doctor, I was taken to a room that had a machine like what will be shooting the radiation to my rectum.
Look, when you have cancer where I do, you gotta embrace it.
Sadly, no superhero side effects are expected, much to Kathleen's dismay. I was also reminded that my ability to have kids will be taken away. Kathleen and I had had this discussion a while ago, before cancer, and this particular hurdle doesn't hit me that hard. Still, there's a little thud that hits you when the doctor casually mentions your ability to create kids will be gone.
The radiation process is one I've never read about, so I had no idea what to expect. Essentially, today was a dry run of both scanning me and marking up my body for where the radiation is going to go. Because of where my tumor is located, I have to lay on my stomach for better access, as it were. The table you lay on is weird in that it actually has a big divot in the middle where your stomach is supposed to go. You then lay down with your head to one side and your arms basically hugging the end of the table you're laying on. They put a wedge up on your legs to help the comfort, and all told it wasn't that bad essentially getting "fitted" for my dots.
It doesn't sound that bad, and it isn't but you better be ready to be done with your modesty. Before going into the room, I had the honor of taking everything off below my waste and wearing that wonderful hospital gown that opens in the back. They were nice enough to follow me around with a sheet in the room as I laid down and used said sheet to cover my caboose as it were. "Eh, I can handle this," I thought. Then the nurse pulled part of the sheet down because...one of the marker points is right at the smile point. It was great getting a little wedge there while they measured, let me tell you.
Still, the actual scan passed pretty easily. If that's what a normal treatment was going to be, honestly this is going to be a picnic compared to the chemo. The only other issue was once the first scan was done, the nurse, tech, and doctor all had to talk about about me in the monitoring room for about fifteen minutes, during which I couldn't move because they still had some measuring to do when they were done. You get to the point where the side of your face that you lay on gets numb, the shoulders start to shake, but you are scared to move because they are making precise measurements of where to shoot radiation into you.
Then the tattoos.
Once they were all set with the measurements, they had to mark on my body specifically where the lasers lined up. These aren't big markers at all, they basically felt like little stabs as they were being filled in...except for the one where the wedge was. Yeah, they had to mark that. Once done, I was able to pick up what was left of my dignity and change back to regular clothes. The actual process was short enough to where I was able to work a half day today.
So, on Monday, February 4th I'll walk back into Beth Israel to start this journey up the second wall. Once we get done with that appointment I'll know what the daily routine will be. It's weird that we can't set the daily appointment in stone now, but I'm just a passenger on this journey so I'll do what they tell me.
That's basically it with the update. We're waiting an extra week so that my body has a full chance to heal. There's a decent chance that Kat and I will do something during that weekend before, which happens to be the Super Bowl, just to celebrate being chemo-free for three weeks. What I REALLY hope is that the metallic taste that's wanted to stick around and the sensitivity to cold completely goes away, so that I can feel like I'm at least getting back to normal. Tonight, I had baked potato soup and a sandwich from Panera, and the first taste always hit me with that metallic after effect. It's frustrating when the taste of food is affected and your options become more and more limited, especially when you still have to eat in order to keep your strength up.
One major thing did happen during these past couple of weeks-someone very special could have chosen a ton of people to run for and actually chose me as her inspiration.
Jane Scott is the mother of one of my good friends from college. For all the horrible things Facebook has done, it has allowed me to reconnect with her in the past year as she's gone through her own issues. She's an inspiration as she's gone through cancer herself, her husband is going through cancer, and her mother is in poor health, going in and out of hospitals. She still shows up with a smile on her face, and signed up for a run down at Disney last week.
She let me know a little earlier that I was her inspiration for her runs by letting me know what was on her playlist. See, her daughter and I are friends thanks to the band, and while we were there we put out two CD's. Jane had both CD's in her playlist, and as she ran she said she felt like it was both her and me cheering her on, and in response she hoped it would help me keep my attitude up. She completed that run last week, and tagged me in her photos, one of which had my name on her number.
To say that I'm speechless and honored is obvious. I don't mean to be an inspiration, and this isn't false modesty. I just got dealt something and I'm just trying to get better. I've had friends from all walks of life step up and remind me that I've made some sort of mark on this world. I've also been reminded by being part of this cancer fight at large that I'm extremely lucky in so many ways. I haven't been the model patient, just ask Kathleen, but one of the things that keeps me from getting too down on myself is the realization that everything has gone as well as it could. The problems have been annoyances, and as the doc casually mentioned today I haven't had to be admitted to the hospital during any of this process. There are a ton of treatments that don't go this smoothly, and for karma's sake I don't want to mess with that.
So, thank you Jane. With what you have and are going through, it boggles the mind that I could be any sort of inspiration.
Now, we wait. The radiation process will be: park in a special lot, walk in, get zapped, walk out. Before treatment and at night, take a bunch of pills instead of having to live with a pump permanently installed during the radiation process. I got to deal with the mail order people today...joy. I feel like I'm about to see a ton of pills, and I hope to God the biggest one is one I can swallow.
I'd also be remiss if I didn't mention thanks for those of you who contributed to the GoFundMe that my coworker Liz set up a while ago. Just so you know, you've provided some security in knowing that if the weather is poor enough for me to not drive one day, I still can get to treatment, as well as providing for a couple of meals per week thanks to Blue Apron. We finally set that up, as we wanted to wait till after the holidays to get the deliveries started. We opted for the two meals per week, because based on our schedules that's usually the most we are in the same place at the same time to cook. We'll be able to do this for at least three months thanks to you, and if there's a week we know we won't be able to enjoy we can always push it.
I also want to throw a quick shout out to Adam and the GoFundMe he set up. It's still up and running, and just as a reminder anything that is donated to it goes straight to my pocket. Folks have been ridiculously generous already, and if no one donates another dime it'll have already been a lot. That said, I just wanted to help the new dad remind folks this one is still out there.
Not sure when I'll blog again, the routine has been to do it after each chemo treatment, and once the radiation gets going it'll be a different routine. Still, if you want to know what's going on, feel free to reach out. I'll be happy to provide any updates, and I'll still keep doing this as well.
Wednesday, January 16, 2019
Wednesday, January 2, 2019
The First Wall is in Sight
Happy 2019! Apologies again for the mid-week update, but between the holidays and the most recent treatment I decided to take things as easy as I could. But here I am giving you an update on where things are.
The schedule of chemo really blessed me. I was able to enjoy both my birthday and the Christmas holiday on the "off" weekend, which has been helpful. I alluded to it the last time, but as we come to the end of this part of the journey, the cumulative effects of the chemo have started to take their toll. Nothing major, dear readers, but I haven't been able to bounce back as quickly as I did in the beginning.
Let's start with the visit to the dermatologist. If you recall, my oncologist had wanted to get a spot that I had on my leg for the past decade plus checked out, and it would serve as a chance to get my blooming eczema checked out as well. The dermatologist at Beth Israel was wonderful, had a great bedside manner, and oddly enough had a connection to Carolina Basketball. It helped give us something to talk about while he did the exam, in which he not only did a punch biopsy on the spot on the leg but scraped off a mole that I had...scratched a little too much.
Take a lesson kids, as much as it may itch, scratching usually doesn't do you any good. In my case, it turned a mole that he wasn't worried about into one that had to be biopsied. I'm still waiting on the results, but based on the discussion I had with the doctor it really isn't anything to worry about. I'm sure the holidays have slowed down the results, and soon enough I'll have confirmation that there's nothing really to worry about.
As far as the eczema goes, the doc prescribed a stronger ointment, one that you can't get over the counter, and it's regular use has done wonders. Thanks to its use, the itching has significantly subsided down to what it would normally be at this time of year. Completely manageable, and even refill available. It's fair to say that at least on that comfort level, life has been a lot better.
What hasn't been good is living in Boston when the weather has turned cold. Sure enough right around the time of the dermatology appointment, some sort of crud decided it wanted to settle into my system. Luckily, no fevers and no signs of the flu, just a ton of mucus that decided it wanted to settle in both my nose and lungs. The lungs were especially fun since it would bring random coughing fits that would last several minutes. Let me tell you, it's tough to get a full night's sleep when you wake up, even with NyQuil, at about 3 AM coughing for about five minutes straight and sounding like you're going to hack up a lung.
The hacking didn't impede me from my holiday shopping. I did everything on-line, but for Christmas we always host my best friend and his boyfriend, the same pair who so wonderfully host us during Thanksgiving. When we do that, my wife cooks an amazing chicken and andouille sausage gumbo, which requires a fair number of ingredients to come together. We also have biscuits, made for the second time with the White Lily flour thanks to one of my wonderful North Carolina friends, that I have for breakfast along with special bacon if I can find it.
Where does one procure a cajun sausage and special bacon? Why at this wonderful butcher shop called Savenor's. There are two shops, one in Cambridge and one in Boston near MGH. For the last few years I went to Cambridge, but this year the trip came up empty without any bacon and any sausage. Luckily, the Boston location had a full selection of the andouille sausage, and let me tell you, this stuff makes a big difference over the mass-produced stuff you can get at grocery stores. It's the closest we get to getting the locally made sausage you get down in Southeast Texas, and as a bonus they had a butch-cut bacon that included a cajun dry-rub. As an extra bonus, I happened to catch a package that had been weighed incorrectly, and was marked at a significantly reduced price.
Once we got to Christmas Eve, it was our first year where we didn't have plans in a long time. For the first couple of years we spent it with family, then once the realities of trying to travel this time of year hit we stayed home and would spend the evening with one of Kat's really good friends and her family. Well, she moved this year and we had to figure out a new tradition. Since we both worked, we decided to take it easy and come home, make some soup, and give each other a gift of a new book and chocolate. Her gift to me? Stuart Scott's Every Day I Fight. It is an outstanding book, one where you can absolutely read it in Scott's voice and one that connected to me in a very personal way. I can't recommend that book highly enough, even if you aren't going through cancer, because Scott is very frank in the way he talks about his feelings while going through the fight. He vocalizes a lot of thoughts I've had, while wondering if I was being selfish or thinking of myself too much. I finished that book in less than a week.
Christmas Eve also brought some wonderful gifts from my older brother and his wife. The best gift may have been this bracelet. It's been added to my right wrist where the #MAAGA and #KACA bracelet sits, and between the two I have a ton of motivation every time I look down.
Christmas itself couldn't have gone better. Kat and I gave each other new headphones to use with our phones, mine being AirPods, hers being a good pair of Bose noise cancelling headphones. They work well for each of our tastes, hers being too big to lose and mine being small enough to fit in my pocket and easily used by just opening the case and putting them in your ear. Kathleen also surprised me with tickets to see BC play UNC! I'll still be doing radiation then, but there isn't any reason to think I can miss the game as the treatment will be earlier in the day. I was also far enough away from my last treatment that I was able to enjoy another Christmas treat: glass bottle Cokes with breakfast. Man, there is no other taste like that Coke that comes out of that bottle. I don't drink them regularly cause of the cost but for Christmas, I always treat myself.
The rest of the day was wonderful, a mix of relaxing and scurrying around to get the apartment in a presentable shape for our company. Kathleen's gumbo was wonderful as usual, and the home made cornbread added a great touch to the meal, and we spent the evening just laughing life away, enjoying each other's company, and watching SNL skits that we hadn't seen in ages. It was a great way to celebrate the season, and while the Cancer talk did come up, it was another day where I got to forget that I was fighting a fight and instead just...be with friends.
All good things must come to an end, and sure enough not only was Christmas over but it was time for the next treatment. While the biopsy results are still pending, I did get good news with the other test I did when I went to BI the week before. As I mentioned, I also had an appointment for a CT scan of the chest and pelvis. The point of the scan was to look around and make sure that, again, the cancer hadn't spread. All the numbers had been good but you don't want to go into your last cycle with signs that the cancer had entered into other areas of your body. The great news from the scan was that the cancer, again, appears contained to the rectal region, and not only that but the lymph nodes that had been enlarged from the last scan were actually reduced in size. Those nodes are the reason why this cancer is stage 3, and that they are starting to shrink while not spreading to other areas is a good sign that this round is working.
As the title of the blog would tell you, there's also a big moment coming up: the last chemo. Last Friday marked part one of the last cycle, which means January 11th will be the actual last treatment. It's getting real folks, because I have an appointment with the radiation oncologist on January 16th to start talking about that portion of the treatment.
I'll have more information about what I'm facing then, but it looks like my original timeline may have been a little off. It's looking like it'll be six weeks of a Monday-Friday treatment, and starting around the first of February. Following that timeline, and assuming I don't miss any days, I'd be finishing around the ACC Tournament. I'm hoping that the actual meeting results in a slightly different timeline, as that will be an...inconvenient six weeks. The sooner I can knock out the radiation, the sooner I can focus on recovering for the surgery.
Honestly, the biggest thing has been the fatigue. It was really bad on Monday and Tuesday, to the point where I slept a good amount of Monday just so I could be up for the New Year to hit. As I was so close to a treatment, I couldn't have any champaign but Kathleen went to a local gourmet store in Harvard Square and found me some wonderful sodas that I could use to celebrate. We were able to enjoy our traditional Rotel queso for dinner, and thanks to the naps I made it to midnight. As for New Year's Day? I barely moved, except right at the end of the day when I grabbed the food for the traditional New Year's dinner.
I figured since last year didn't go so well I needed to change up how we did the pork, black-eyed peas, and cabbage. I also knew I wasn't going to feel like doing a ton of work because of the fatigue. Luckily, King's, the bar-b-cue place in Kinston where my grandparents are from offers a delivery service. Using that, I was able to get some good Eastern NC pork, some well-cooked peas, some fine cole slaw, and even some Brunswick Stew for my lovely wife who loves the stuff despite never hearing of it till she moved to North Carolina. I thought I had ordered hush puppies as well for the cornbread part, but either they were forgotten or I just didn't see them in the box. No bother, though, we have a great cornbread recipe that's easy to make and, in the end, it's probably better to have eaten the real stuff instead of the fried pieces.
Today has been better, and if the pattern follows as each day passes I'll get closer to normal. I'll have to do it next week without Kathleen as she plans to head down to Texas and meet her nephew for the first time. There shouldn't be any issues as the week of a treatment is like a normal week for me, and she'll be back in time to celebrate the last chemo. In the meantime, life rolls along.
So, once again, thank you for everything you did in 2018. Without your love and support, I don't know if I'd be able to be as positive as I am now. I only hope that it continues in 2019, and by the end of the year I'm thanking you for your help in making me a cancer survivor. So to you and yours, Happy New Year!
The schedule of chemo really blessed me. I was able to enjoy both my birthday and the Christmas holiday on the "off" weekend, which has been helpful. I alluded to it the last time, but as we come to the end of this part of the journey, the cumulative effects of the chemo have started to take their toll. Nothing major, dear readers, but I haven't been able to bounce back as quickly as I did in the beginning.
Let's start with the visit to the dermatologist. If you recall, my oncologist had wanted to get a spot that I had on my leg for the past decade plus checked out, and it would serve as a chance to get my blooming eczema checked out as well. The dermatologist at Beth Israel was wonderful, had a great bedside manner, and oddly enough had a connection to Carolina Basketball. It helped give us something to talk about while he did the exam, in which he not only did a punch biopsy on the spot on the leg but scraped off a mole that I had...scratched a little too much.
Take a lesson kids, as much as it may itch, scratching usually doesn't do you any good. In my case, it turned a mole that he wasn't worried about into one that had to be biopsied. I'm still waiting on the results, but based on the discussion I had with the doctor it really isn't anything to worry about. I'm sure the holidays have slowed down the results, and soon enough I'll have confirmation that there's nothing really to worry about.
As far as the eczema goes, the doc prescribed a stronger ointment, one that you can't get over the counter, and it's regular use has done wonders. Thanks to its use, the itching has significantly subsided down to what it would normally be at this time of year. Completely manageable, and even refill available. It's fair to say that at least on that comfort level, life has been a lot better.
What hasn't been good is living in Boston when the weather has turned cold. Sure enough right around the time of the dermatology appointment, some sort of crud decided it wanted to settle into my system. Luckily, no fevers and no signs of the flu, just a ton of mucus that decided it wanted to settle in both my nose and lungs. The lungs were especially fun since it would bring random coughing fits that would last several minutes. Let me tell you, it's tough to get a full night's sleep when you wake up, even with NyQuil, at about 3 AM coughing for about five minutes straight and sounding like you're going to hack up a lung.
The hacking didn't impede me from my holiday shopping. I did everything on-line, but for Christmas we always host my best friend and his boyfriend, the same pair who so wonderfully host us during Thanksgiving. When we do that, my wife cooks an amazing chicken and andouille sausage gumbo, which requires a fair number of ingredients to come together. We also have biscuits, made for the second time with the White Lily flour thanks to one of my wonderful North Carolina friends, that I have for breakfast along with special bacon if I can find it.
Where does one procure a cajun sausage and special bacon? Why at this wonderful butcher shop called Savenor's. There are two shops, one in Cambridge and one in Boston near MGH. For the last few years I went to Cambridge, but this year the trip came up empty without any bacon and any sausage. Luckily, the Boston location had a full selection of the andouille sausage, and let me tell you, this stuff makes a big difference over the mass-produced stuff you can get at grocery stores. It's the closest we get to getting the locally made sausage you get down in Southeast Texas, and as a bonus they had a butch-cut bacon that included a cajun dry-rub. As an extra bonus, I happened to catch a package that had been weighed incorrectly, and was marked at a significantly reduced price.
Once we got to Christmas Eve, it was our first year where we didn't have plans in a long time. For the first couple of years we spent it with family, then once the realities of trying to travel this time of year hit we stayed home and would spend the evening with one of Kat's really good friends and her family. Well, she moved this year and we had to figure out a new tradition. Since we both worked, we decided to take it easy and come home, make some soup, and give each other a gift of a new book and chocolate. Her gift to me? Stuart Scott's Every Day I Fight. It is an outstanding book, one where you can absolutely read it in Scott's voice and one that connected to me in a very personal way. I can't recommend that book highly enough, even if you aren't going through cancer, because Scott is very frank in the way he talks about his feelings while going through the fight. He vocalizes a lot of thoughts I've had, while wondering if I was being selfish or thinking of myself too much. I finished that book in less than a week.
Christmas Eve also brought some wonderful gifts from my older brother and his wife. The best gift may have been this bracelet. It's been added to my right wrist where the #MAAGA and #KACA bracelet sits, and between the two I have a ton of motivation every time I look down.
Christmas itself couldn't have gone better. Kat and I gave each other new headphones to use with our phones, mine being AirPods, hers being a good pair of Bose noise cancelling headphones. They work well for each of our tastes, hers being too big to lose and mine being small enough to fit in my pocket and easily used by just opening the case and putting them in your ear. Kathleen also surprised me with tickets to see BC play UNC! I'll still be doing radiation then, but there isn't any reason to think I can miss the game as the treatment will be earlier in the day. I was also far enough away from my last treatment that I was able to enjoy another Christmas treat: glass bottle Cokes with breakfast. Man, there is no other taste like that Coke that comes out of that bottle. I don't drink them regularly cause of the cost but for Christmas, I always treat myself.
The rest of the day was wonderful, a mix of relaxing and scurrying around to get the apartment in a presentable shape for our company. Kathleen's gumbo was wonderful as usual, and the home made cornbread added a great touch to the meal, and we spent the evening just laughing life away, enjoying each other's company, and watching SNL skits that we hadn't seen in ages. It was a great way to celebrate the season, and while the Cancer talk did come up, it was another day where I got to forget that I was fighting a fight and instead just...be with friends.
All good things must come to an end, and sure enough not only was Christmas over but it was time for the next treatment. While the biopsy results are still pending, I did get good news with the other test I did when I went to BI the week before. As I mentioned, I also had an appointment for a CT scan of the chest and pelvis. The point of the scan was to look around and make sure that, again, the cancer hadn't spread. All the numbers had been good but you don't want to go into your last cycle with signs that the cancer had entered into other areas of your body. The great news from the scan was that the cancer, again, appears contained to the rectal region, and not only that but the lymph nodes that had been enlarged from the last scan were actually reduced in size. Those nodes are the reason why this cancer is stage 3, and that they are starting to shrink while not spreading to other areas is a good sign that this round is working.
As the title of the blog would tell you, there's also a big moment coming up: the last chemo. Last Friday marked part one of the last cycle, which means January 11th will be the actual last treatment. It's getting real folks, because I have an appointment with the radiation oncologist on January 16th to start talking about that portion of the treatment.
I'll have more information about what I'm facing then, but it looks like my original timeline may have been a little off. It's looking like it'll be six weeks of a Monday-Friday treatment, and starting around the first of February. Following that timeline, and assuming I don't miss any days, I'd be finishing around the ACC Tournament. I'm hoping that the actual meeting results in a slightly different timeline, as that will be an...inconvenient six weeks. The sooner I can knock out the radiation, the sooner I can focus on recovering for the surgery.
Honestly, the biggest thing has been the fatigue. It was really bad on Monday and Tuesday, to the point where I slept a good amount of Monday just so I could be up for the New Year to hit. As I was so close to a treatment, I couldn't have any champaign but Kathleen went to a local gourmet store in Harvard Square and found me some wonderful sodas that I could use to celebrate. We were able to enjoy our traditional Rotel queso for dinner, and thanks to the naps I made it to midnight. As for New Year's Day? I barely moved, except right at the end of the day when I grabbed the food for the traditional New Year's dinner.
I figured since last year didn't go so well I needed to change up how we did the pork, black-eyed peas, and cabbage. I also knew I wasn't going to feel like doing a ton of work because of the fatigue. Luckily, King's, the bar-b-cue place in Kinston where my grandparents are from offers a delivery service. Using that, I was able to get some good Eastern NC pork, some well-cooked peas, some fine cole slaw, and even some Brunswick Stew for my lovely wife who loves the stuff despite never hearing of it till she moved to North Carolina. I thought I had ordered hush puppies as well for the cornbread part, but either they were forgotten or I just didn't see them in the box. No bother, though, we have a great cornbread recipe that's easy to make and, in the end, it's probably better to have eaten the real stuff instead of the fried pieces.
Today has been better, and if the pattern follows as each day passes I'll get closer to normal. I'll have to do it next week without Kathleen as she plans to head down to Texas and meet her nephew for the first time. There shouldn't be any issues as the week of a treatment is like a normal week for me, and she'll be back in time to celebrate the last chemo. In the meantime, life rolls along.
So, once again, thank you for everything you did in 2018. Without your love and support, I don't know if I'd be able to be as positive as I am now. I only hope that it continues in 2019, and by the end of the year I'm thanking you for your help in making me a cancer survivor. So to you and yours, Happy New Year!
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