As I've come to know what to expect...mostly...from when we have a treatment weekend, I thought I'd go a little different and type up what's going on while sitting in the chair. So, greetings from Beth Israel Medical Center's Shapiro Center's Ninth Floor.
Man that's a mouthful.
Treatment Fridays are one of the ultimate definitions of "hurry up and wait." Because of the length of my treatment, I really have no choice but to take a morning appointment so that everything can be done before the floor closes down. So, for anyone thinking "well at least he gets to sleep in a little on treatment days," forget it. The alarm goes of at the same time, and with the traffic around the Longwood area I almost spend the same amount of time in the car that I do heading to work. This week also saw the complication of snow for the first time, a real danger of the timing of my treatment. The good news is that the storm that hit the east coast did so during the evening, and by the time I woke up it had warmed up and turned over to rain.
Let me tell you, the moment I walked up to my car to see the only snow left on it was on the windshield was one of the best moments of my day. For those of you that haven't had the pleasure of cleaning snow off of your car, it can be an exhausting process. First off it requires the investment of a snow brush, and depending on how good that brush is can significantly impact how much work you have to do. When it's only on your windshield AND you remembered to leave your wipers up so they don't freeze to the glass, you've got yourself a good start to the day.
The day at the hospital ends up being basically the length of a work day. I check in on the Ninth floor at 8 am, and walk to the treatment area to get my vitals and have the line installed into my port. The nurse then grabs three vials of blood to be sent down to the lab for testing. They can test for just about everything, but mostly they are looking at blood cell counts, liver function, sometimes testing the cancer marker, all that fun stuff. The blood draws make sure nothing is in the danger zone and can affect what they do with the treatment.
Once the draw is done, it's back to the waiting room just to be called back to an exam room to speak with my Oncologist and the NP he works with. I mostly deal with the NP, who is great. We chat about how I feel, any new symptoms that popped up, and just get a general feel for how things are progressing. She's easy to talk to, which helps considering the type of cancer I'm dealing with leads to a lot of frank stuff you don't talk about in polite company. Those conversations so far have ended with no surprises. She then grabs the oncologist, who checks over the results, talks a little more big picture about where we are, and is responsible for ordering the medicine I'll be treated with during each round.
Remember the blood draw? Today's showed some issues with the liver function, which led to a discussion about whether I've added a medicine to the mix or increased my drinking. As I'm only taking what has been prescribed save for some heartburn medicine that they are aware of, and my alcohol intake has been one drink on the non-treatment weekends, then it's pretty clear that the issue is the chemo. The good news is that they've been very aggressive with this treatment, which means they've left themselves some room to dial things back and still get the same result. Thus, today's treatment of the main 5FU drug will be scaled back slightly to avoid doing any more damage to that wonderful organ.
It should also be noted both the oncologist and the NP approve of the #KACA and #MAAGA bracelet. Both got a hearty chuckle when they saw it for the first time and approve of the message.
Once the visit with the medical team is done, it's back to the waiting room. By now, you're looking at around 10 AM and the room has pretty much filled up with folks waiting to be seen and treated. The wait is mostly to get all the medicine and treatment processed and assign me a chair. Eventually, the name is called again and I make my way back to the treatment area to sit at a station headed by a pink reclining chair.
Each station has a cart full of the supplies needed, the IV drip pole, and the reclining chair that is my home for the next few hours. My nurse will eventually greet me, talk about anything that changed over the last treatment, and then hook up the medicine into the line coming out of my port. They first put in some pre-meds to get my body ready, then one bag of chemo, then the second round. All told, once the medicine goes in it'll take about four hours for everything to be put in. These four hours will include multiple trips to the restroom as that is a lot of saline to put in your body with the rest of the drugs. It's not as easy as it sounds, as you have to unplug the drip pole from the power outlets and wheel that sucker with you to the restroom. You also have to take care to not pull any lines out while going through this process.
Once all that medicine is done, my little medicine pump is installed with the final round of treatment. The pump becomes my buddy for the next 46 hours, and again the goal is to make sure to not pull the line out of..anything...or to make sure to not damage the device that is providing this medicine to me. It's easy to forget when walking that you have this line just hanging off of you that can catch on doors, chairs, whatever. The nice thing is that, usually, I don't feel hamstrung in terms of energy while going through this process, and that means that Kat and I can take an outing on Saturday which helps us do something that feels "normal." This involves a visit to the grocery store for supplies, somewhere for dinner, and then a trip back home. It's not much, but it breaks the monotony of the weekend.
I've been lucky so far that during the weekend I get treated that I feel good enough to do some normal activities, but what stings is that I can't do more. For instance, this weekend Kat and I would love to go see "The Crimes of Grindelwald." However, as this is the treatment weekend I have to pass because a) you never know what might happen and you don't want to be in a theater if a wave of nausea or worse hits b) because of my cold sensitivity I can't really have a drink during the movie, which means I can't really have popcorn, and that, my friends, kills the movie experience for me. Anyone that knows me well knows I HAVE to have some popcorn at the theater. Yes, I'm that person. So, we'll figure out a way to see it next weekend.
After 46 hours I go back to BIDMC to have the pump taken off, the line taken out, and to have a Neulasta installed. You may have seen commercials on this device, basically it's a drug that helps lower the risk of infection during chemotherapy because, well, chemo itself can increase the risk of infection. It's a little device they put on your arm, and once activated it injects a tiny needle into your arm and sits there for 27 hours. At the 27 hour mark, it beeps and then takes 45 minutes to actually deliver the medicine.
Now, you may be looking at the fact that an electronic pump is attached to me for 46 hours, and then a little electronic device installed after that for 27 hours, and wonder, "Al, how do you bathe?" Excellent question, the answer is...I don't. The last shower I will take until Tuesday morning was this morning. Luckily, for Monday's I have a spray bottle for my hair, deodorant for the body, and a body spray for the rest so that I don't offend my co-workers. Needless to say that shower on Tuesday feels good.
That's a treatment weekend. It's not overly stressful, it just has its different levels of inconvenience. It's made easier having Kathleen around to help me out during different spots, and on the Mondays the Neulasta is installed I take a couple of hours off from work. From there, it's about recovering from the treatment and getting ready for the next one.
The last couple of weeks have followed with that recovery. It took until Thursday last week before soda tasted good again, and even though I am expanding my coffee palate, my system isn't used to drinking the stuff yet. So, I've been trying to drink the wonderful gifts provided but it'll take some time as I'm not quite used to it yet.
Anyway, now it's time to just sit back and let the medicine do its work. Hope everyone has a great weekend and a great Thanksgiving, and a small reminder, if you feel so compelled to help, there's a GoFundMe that's been set up for me, thanks to the wonderful Adam Pohl. Thank you, so much, for everyone who has already contributed. You have no idea how much it has helped me during a time when so much else has been going on. It's added a level of stability that is huge, so thank you so much.
Friday, November 16, 2018
Sunday, November 4, 2018
Third battle through, little bit tougher
What a two weeks! It feels weird that this much time has already passed, especially since I've now gotten though my third treatment. One month down!
First off, I'm going to start with a Thank You for those who contributed to the GoFundMe. You think you'll be ok with what you have, but then you realize that you have to pay to park at the hospital, you and your wife don't feel like cooking because of schedules and that cooking requires trips to the grocery store to get ingredients, and so ordering food in sounds good. Or that while you don't have to pay the medical bills until way down the road, you still have to pay something for the medicine they want to give you. This eats up through your available funds a lot quicker than you expect, and this money that has come in has been a huge help.
If you are a new follower and catching up with me for the first time, by all means, feel free to contribute. Trust me, each little bit takes a huge amount of stress off, and if you are wondering if there is some tangible way you can help, that makes it pretty easy.
Ok, enough pandering.
I've mostly figured out how the cycling works by now. Once the medicine enters on Friday, the side effects hit me almost immediately: the cold neuropathy. The best way to describe it, anything that is cold creates an instant numbing feeling in the feet, hands, and most importantly, the mouth. What does that mean? Walking and touching cold things is difficult, as the appendage will almost seize. As we get closer to winter it's not going to get much better, but that's what layers are for. More importantly, the wonderful suggestion you all have made about eating popsicles or cherry-lime Sonic Slushees are not good, because the moment something cold gets in my mouth, a lump forms in my throat and the sweet taste just isn't good anymore.
Not going to lie, that sucks. I'm a big drinker of cold sweet tea and love soda. Yes, those are unhealthy things, especially the soda, and in a way it's a good think this side effect will keep me from enjoying these items, but it still sucks to have something you enjoy taken away from you. After the first round, the ability to drink soda returned about three days after the pump was removed. This last round, it didn't really return until about Thursday or Friday. The upshot is, until it comes back, the fluids consumed are all hot. Either lukewarm water with a citrus splash to give it some flavor, or coffee, or tea. The ability to drink sweet coffee has been a Godsend as it at least gives me the caffeine shot I'm used to in the morning.
Now look, really the only side effects I had are that and the tiredness. It took about a full week for my body to return to it's normal cycle of rest, and I probably didn't feel like "myself" until Friday/Saturday of last week. But you know what I haven't been dealing with? Crippling nausea, massive diarrhea, hair loss, and a general ill feeling that requires me to miss a huge amount of work. I'm lucky. Ridiculously so, and it feels a little whiny to be complaining about not being able to eat all the things that I want to. But, let's be honest, if you had something taken away from you, even if it was small, you'd probably be upset, too.
The other thing is that my appetite is reduced for the weekend of the treatment and stays fairly low for that time that the neuropathy hangs around. This caused me to lose about 6 pounds at first this last cycle. I've kept an eye on it as sudden weight loss could be a sign of something bad, but this quickly changed. Last Saturday, Kathleen and I decided to head to the suburbs and hit up Texas Roadhouse in Walpole and it...was...so...good. The first taste of their sweet tea and fresh lemon and a smile just curled across my face. No lump and the sweetness tasted so good. I then had a full Caesar salad, an 8 oz sirloin, and a full sweet potato that was loaded. I then topped that off with some of the yeast rolls and munched on peanuts. The appetite was back, and the rest of the week it returned with a vengeance. To the point that when I went back this past Friday, I was pretty much the exact weight I was two weeks prior, although that number is still about 7 pounds lower then when I started.
That first week brought a few grumbles from me, not going to lie. Unfortunately when I get like that the only person I can vent to is my saint of a wife. The same woman who is working part time, going to nursing school with clinical classes that require her to be at Mt Auburn at 6:30 in the morning twice a week and still trying her damndest to learn this stuff so she can advance, and somehow she has to find time to soothe my soul.
Let me just say this about her: as many good wishes as ya'll have had for me, reach out to her as well. In a weird way, I'm doing the easy part: I'm just going where they tell me to go, doing what they tell me to do, and letting the medicine do its thing. She has to support me, support herself, and stay in a right headspace in order to focus on succeeding. This is not easy for her at all, and it's even tougher as our closest friends are spread all across the country. So, spare a thought for her as you would for me. If you know her, you know how difficult this has been for her, too.
Once the appetite came back, I ditched the coffee and went back to soda. Since it's something I know that was going to be taken away from me once the next round began, I wanted to consume as much of it as possible. Probably not the healthiest thing, I know, but when I met with the awesome docs on Friday they really didn't see a problem with it. The biggest thing about this fight is being in as good a mental space as you can be, and if food allows you to be happy and be in a good space, then they are good with you doing it. If anything, the sweets help keep my weight back up and keep me from yo-yoing too much.
Thus, we proceeded to Friday last week. On Thursday the apprehension started to build towards the treatment, the cold sensitivity, the loss of soda, and as I walked up my doorstep, I saw two packages. One big box and one envelope, both marked for me, I didn't have a clue about what was in either.
As one does, you open the box first. Inside:
First off, I'm going to start with a Thank You for those who contributed to the GoFundMe. You think you'll be ok with what you have, but then you realize that you have to pay to park at the hospital, you and your wife don't feel like cooking because of schedules and that cooking requires trips to the grocery store to get ingredients, and so ordering food in sounds good. Or that while you don't have to pay the medical bills until way down the road, you still have to pay something for the medicine they want to give you. This eats up through your available funds a lot quicker than you expect, and this money that has come in has been a huge help.
If you are a new follower and catching up with me for the first time, by all means, feel free to contribute. Trust me, each little bit takes a huge amount of stress off, and if you are wondering if there is some tangible way you can help, that makes it pretty easy.
Ok, enough pandering.
I've mostly figured out how the cycling works by now. Once the medicine enters on Friday, the side effects hit me almost immediately: the cold neuropathy. The best way to describe it, anything that is cold creates an instant numbing feeling in the feet, hands, and most importantly, the mouth. What does that mean? Walking and touching cold things is difficult, as the appendage will almost seize. As we get closer to winter it's not going to get much better, but that's what layers are for. More importantly, the wonderful suggestion you all have made about eating popsicles or cherry-lime Sonic Slushees are not good, because the moment something cold gets in my mouth, a lump forms in my throat and the sweet taste just isn't good anymore.
Not going to lie, that sucks. I'm a big drinker of cold sweet tea and love soda. Yes, those are unhealthy things, especially the soda, and in a way it's a good think this side effect will keep me from enjoying these items, but it still sucks to have something you enjoy taken away from you. After the first round, the ability to drink soda returned about three days after the pump was removed. This last round, it didn't really return until about Thursday or Friday. The upshot is, until it comes back, the fluids consumed are all hot. Either lukewarm water with a citrus splash to give it some flavor, or coffee, or tea. The ability to drink sweet coffee has been a Godsend as it at least gives me the caffeine shot I'm used to in the morning.
Now look, really the only side effects I had are that and the tiredness. It took about a full week for my body to return to it's normal cycle of rest, and I probably didn't feel like "myself" until Friday/Saturday of last week. But you know what I haven't been dealing with? Crippling nausea, massive diarrhea, hair loss, and a general ill feeling that requires me to miss a huge amount of work. I'm lucky. Ridiculously so, and it feels a little whiny to be complaining about not being able to eat all the things that I want to. But, let's be honest, if you had something taken away from you, even if it was small, you'd probably be upset, too.
The other thing is that my appetite is reduced for the weekend of the treatment and stays fairly low for that time that the neuropathy hangs around. This caused me to lose about 6 pounds at first this last cycle. I've kept an eye on it as sudden weight loss could be a sign of something bad, but this quickly changed. Last Saturday, Kathleen and I decided to head to the suburbs and hit up Texas Roadhouse in Walpole and it...was...so...good. The first taste of their sweet tea and fresh lemon and a smile just curled across my face. No lump and the sweetness tasted so good. I then had a full Caesar salad, an 8 oz sirloin, and a full sweet potato that was loaded. I then topped that off with some of the yeast rolls and munched on peanuts. The appetite was back, and the rest of the week it returned with a vengeance. To the point that when I went back this past Friday, I was pretty much the exact weight I was two weeks prior, although that number is still about 7 pounds lower then when I started.
That first week brought a few grumbles from me, not going to lie. Unfortunately when I get like that the only person I can vent to is my saint of a wife. The same woman who is working part time, going to nursing school with clinical classes that require her to be at Mt Auburn at 6:30 in the morning twice a week and still trying her damndest to learn this stuff so she can advance, and somehow she has to find time to soothe my soul.
Let me just say this about her: as many good wishes as ya'll have had for me, reach out to her as well. In a weird way, I'm doing the easy part: I'm just going where they tell me to go, doing what they tell me to do, and letting the medicine do its thing. She has to support me, support herself, and stay in a right headspace in order to focus on succeeding. This is not easy for her at all, and it's even tougher as our closest friends are spread all across the country. So, spare a thought for her as you would for me. If you know her, you know how difficult this has been for her, too.
Once the appetite came back, I ditched the coffee and went back to soda. Since it's something I know that was going to be taken away from me once the next round began, I wanted to consume as much of it as possible. Probably not the healthiest thing, I know, but when I met with the awesome docs on Friday they really didn't see a problem with it. The biggest thing about this fight is being in as good a mental space as you can be, and if food allows you to be happy and be in a good space, then they are good with you doing it. If anything, the sweets help keep my weight back up and keep me from yo-yoing too much.
Thus, we proceeded to Friday last week. On Thursday the apprehension started to build towards the treatment, the cold sensitivity, the loss of soda, and as I walked up my doorstep, I saw two packages. One big box and one envelope, both marked for me, I didn't have a clue about what was in either.
As one does, you open the box first. Inside:
This was a absolute gem of a gift given to me by Jamie Holcomb, or you may know her as Jamie DeMent. If you watch a fair amount of the Hallmark channel, chances are you've seen her cooking for their daytime show, all of which come from the hard work her and her husband do out at their farm. I've been honored to know Jamie since we were in preschool together. PRESCHOOL. She was able to get my address...how I don't know...and went to A Southern Season and picked up all these wonderful gifts from Chapel Hill and North Carolina in General. The Carolina Blend coffee is wonderful, has a bit of a nutty flavor and tastes great in the new mug. We have a caramel pump we use for sweetener, but I've been drinking more tea so the amber sugar will likely come in handy, and then the cookies and brittle are just wonderful.
Jamie is a sweetheart and a good soul. The card reminded me that people back in the Tar Heel State are thinking about my ass and want it to get better. This alone would be enough to bring a smile to my face at just the perfect time.
Then, I had an envelope to open. The return address was from one Joey Powell. You may know him as the Executive Director of the Me Fine Foundation, a fellow Tar Heel, and all around good dude simply because he had a good job in radio sales and left it behind to help families pay for the unexpected expenses of dealing with a sick child. The medical bills are the part you know, but as I've quickly discovered, it's the more immediate things that sneak up on you. The parking at the hospital, the electricity bills, groceries, hotel costs to stay near your child. He and I have become friendly on social media because of a shared love of the Tar Heels and a common friend in Phi Mu Alpha brother Connie Sawyer.
It turns out Joey is a big Carolina Hurricanes fan, and the foundation has done a fair amount of work with the Canes, creating some connections. I mentioned how sweet the new third jerseys were for the Canes, and Joey went to work. He had Connie get my address from me, and worked with Mike Maniscalco to get his hands on a brand new authentic Hurricanes Third Jersey. It is beautiful, to the point I had to put it on immediately.
I immediately tweeted out my thanks...tagging the Canes since it was their sweater I was wearing.
I was floored on Friday morning when this tweet came out:
Everyone send some positive vibes to our friend @albhood— Carolina Hurricanes (@NHLCanes) November 2, 2018
You got this, buddy 💪 https://t.co/PbTO2wVGt9
I mean, I'm floored. The original tweet had nearly 200 likes, the tweet from the Canes had 300, dozens of you not only tweeted your well-wishes but also added your support to me. I hope I've been able to thank each and every one of you who responded directly to me. If not, consider this my official "thank you" for your thoughts. Every positive vibe just makes me stronger.
So, of course, with the spirit of the gift, I went to Beth Israel for my treatment Friday with the Canes on my chest.
This treatment was the roughest. By the last half an hour I was feeling really restless, my system was battling waves of nausea, and I was in probably the most agony that I had been. It still wasn't nearly as bad as it could of been, and luckily no fluids came out. Once the treatment was done, I started to instantly feel better.
I struggled to stay away for the UNC exhibition game on Friday night, and missed the Canes game on Friday night. I got a glorious ten hours of sleep thanks to Lorazepam, my nerve medicine, and two anti-nausea pills. All told when I woke on Saturday it felt like a real reset, and for the rest of the weekend I felt pretty good.
Seriously, if this is the worst I'm going to have to deal with, part of it was my own idiocy. I forgot to bring my anti-nausea meds with me on Friday and they would have helped. I also made it a point to have a bigger breakfast from McDonald's to enjoy one last 20 oz coke before I knew it would be taken away from me. I also skipped lunch because I didn't have much of an appetite, and all that combined to just knock me out. BUT, we ordered some chicken pho for me on Friday night and the broth, noodles, and chicken were a wonderful combination. When I went to sleep on Friday, I was back in a good place.
Saturday passed with watching another disappointing effort from the Tar Heels on the football field, but afterward we were able to make an afternoon sojourn out to Walgreen's, PetSmart, and Wegman's before having a dinner at IHOP. I was so thankful they added savory crepes to the menu, as I was able to have a egg, ham, and cheese combo that tasted good and was just enough food. Today, well, I got up, had some coffee, had some hot bar items from a local store, and now am pump-free for another two weeks!
But the best news of the weekend. Four weeks ago when we started this process, they measured my CEA, or the Carcinoembyronic Marker. It was literally the only blood marker that showed I have cancer, because everything else is so good. When they are looking at this number, they want a number between 0-4. That first test in September had the number at 42, clearly what they were expecting with a 2.5 cm tumor in the rectum. They measured this past Friday to check the effectiveness of the medicine, and after just two treatments (remember this was before the third), that marker has gone all the way down to 10! I still have the tumor, obviously, and it's still above what it should be, but clearly what they are doing is working!
The fight goes on! It's working, and I'm getting better, I know it. All of you out there who have sent gifts and passed your well-wishes to me, I'm convinced that's played a part because it keeps my attitude positive and allows me to continue to grind it out. So thank you all. For your gifts, for your donations, and for your positive thoughts. They all help me so much.
Don't be afraid to reach out if you have any questions. I'll definitely answer them. In the meantime, send along your thoughts hoping that these side effects don't last as long this time.
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