Trying to keep everyone in the loop is going to be problematic at best if I took time to text everyone. Trust me, this is a good problem to have and I'll get more into the gratitude I've felt in a little bit, but it's fair to say that in terms of overall updates your best bet will be here. In the spirit of keeping you all in the loop, here's my updated schedule.
I got the call yesterday (Friday) that my appointments for the first round are set. First off, in order to make delivery of the medicine easier, I'm going to get a port installed in my chest. This is going to require an outpatient procedure, and for the next 6 months at least this bad boy is going to sit there so that the team has easy access to deliver medicine, as well as easily take blood to check for markers, do genetic testing, and put me one step closer to turning into a bionic human. Any sort of airport check ins will be fun, as well, because when you have a device implanted in your body, you're likely going to raise some eyes at a screening.
If the situation were really urgent, they could take me from surgery immediately over to get the medicine delivered, but they prefer to give the patient a day to recover prior to starting the chemo. Thus, at 9:15 Friday I'll return to BIMC, meet with the team of oncologists, make sure everything is good to go, then at 11 AM I'll sit down for the first treatment. The medicine does not all come in at once, it actually will take about 46 hours for full delivery, but I'll be at the clinic for about 5 hours Friday. I'll leave with a pump that I get to take home with me for the weekend, and then once it's delivered I'll head back to BIMC to get it properly disconnected. The Cancer Center said they usually try to get an in-home nurse assigned but insurance can be spotty about approval, and since I live in the city and only have to do it every other weekend, I figured I'll save them the trouble of asking.
If all goes well, then we repeat the chemo process every other Friday. The really good news is that the top side effects of the main chemo is numbness to cold (like, to the point where I feel like I have no hand), tiredness, and increase chance of infection. Mostly, the first two side effects dissipate after the medicine is delivered, but the increased risk of infection is something I'll have to deal with from this point forward. On the weekends I have the chemo, that pump will have to come along with me if I were to go anywhere. Supposedly the side effects aren't bad enough to where even though I'll have that pump, I won't be overly limited in what I can do. We'll see.
After the first treatment, assuming it takes as he expects, they'll add another medicine to the cocktail. Basically, it's a cherry on top that's not necessary, but if I take well to it it'll help. If I don't, then they can remove it without it affecting the course of action. The potential side effected added to this?
Let's just say that the feeling I had before the colonoscopy and MRI where I had to clean things out would be with me again. If that is severe, they'll stop using that medicine, but if it's occasional, we'll keep going so we can shrink this damn thing as best we can.
THIS PART IS IMPORTANT. REPEAT. THIS PART IS IMPORTANT. DO NOT SKIM PAST THIS IF YOU WANT TO VISIT ME.
The oncologist did not really get that serious about a lot of things. The one thing he did make sure to emphasize: the flu shot. Despite the medicine, he told me I have to get the flu shot to help inoculate myself against contracting it, and that goes for anyone who thinks you might even possibly visit, or if you will spend a significant time around me. Please get it, as I plan on getting mine today. Most places you work with offer it for free at this point. My wife is going to probably be enforcing this even harder than I will, so...get the shot!
OK, back to the normal blog.
That's as much info as I have for you now in terms of treatment and where things stand. I continue to be happy with the team over at BIMC as a potential miscommunication was handled great on Friday. There really seems to be an attitude of making sure I'm not just a number at this clinic. I'm eternally grateful for this.
Speaking of grateful...
I wanted to take some time to give one big "Thank you" to all of you. The reason I put the first message out in the blog was that I know I'm ridiculously lucky about having a lot of people who care about me and are concerned about what's happening. What I did not expect was just the sheer outpouring of love and affection that hit as soon as I hit "post" for that entry. The comments just kept coming on Facebook, enough to where I missed a whole section and had to go back to read them yesterday.
I wanted to respond to each and every one of them, just to say "Thanks" or give some sort of individual message, but I realized if I did that it would take forever. On top of that, others of you skipped Facebook all together and just reached out to me via text, e-mail, FB messenger, and I appreciated every single second of it.
It's overwhelming to know you've touched that many lives to where news like this makes them feel compelled to not just offer their well-wishes, but genuinely want to do something else to help. I have so many of you who want to be kept in the loop, that the line reaches around the metaphorical block. Simply on Wednesday alone, as I delivered the news to the smaller circle of people that I had let in, I spent three hours on the phone before posting this, and I've spent more on it since. I've had people who were currently dealing with cancer on their own, family members, people I've only met on-line, just untold amount of people reaching out to offer support, advice, love, positivity...you name it.
Keep it coming, is the best thing I can say. I may not take advantage of what you are offering because, by nature, I'm a private person, but I know that when you are offering it's coming from a true desire to want to help. One friend even apologized for offering unsolicited advice, which I hated they had to do because I know the place they are coming from. Most of you are scattered all throughout the country: the result of living in three areas, going to a university that sends its alumni out into the world, and the social media age where people can connect like never before. You hear this news and because you're my friend, you want to help in some way. I've been there.
Please understand if I don't take you up on your offer, or use the resources you offer, the gesture is still appreciated. This whole process is overwhelming to the nth degree, and in these first couple of weeks I've tried to narrow my focus to understanding what I'm facing, and to get the treatment going. Once the chemo starts, the pace will slow down dramatically. To some extent, it hasn't fully sunk in that I even have this. Maybe that's a good thing that it helps the optimism, and it helps me avoid thinking about the places where things could go wrong. I have no doubt there will be difficult days ahead, but with the love and support you've given...you have no idea how much of a help that will be to just continue..normalcy.
I mentioned this to a few of you, and I think I mentioned it Wednesday night: don't be afraid to reach out to me. If you have my number and you want to know what's going on, send a text. If you don't and want it, send me a FB message and I'll send it along, or if you want to just use FB messenger, do so. As this goes on, with a treatment only every other weekend and some sense of routine about it, there probably won't be much out there for me to post on here. It doesn't mean anything is wrong, and it may not mean you missed anything I posted. By all means, reach out to me. The sheer number of people who want to know what's going on simply means I can't get to everyone, and at some point it's going to be easier for me to just let you reach out.
So thank you, one and all for the support so far and the support that's about to come. It means so much. Together, we will #MAAGA
I got the call yesterday (Friday) that my appointments for the first round are set. First off, in order to make delivery of the medicine easier, I'm going to get a port installed in my chest. This is going to require an outpatient procedure, and for the next 6 months at least this bad boy is going to sit there so that the team has easy access to deliver medicine, as well as easily take blood to check for markers, do genetic testing, and put me one step closer to turning into a bionic human. Any sort of airport check ins will be fun, as well, because when you have a device implanted in your body, you're likely going to raise some eyes at a screening.
If the situation were really urgent, they could take me from surgery immediately over to get the medicine delivered, but they prefer to give the patient a day to recover prior to starting the chemo. Thus, at 9:15 Friday I'll return to BIMC, meet with the team of oncologists, make sure everything is good to go, then at 11 AM I'll sit down for the first treatment. The medicine does not all come in at once, it actually will take about 46 hours for full delivery, but I'll be at the clinic for about 5 hours Friday. I'll leave with a pump that I get to take home with me for the weekend, and then once it's delivered I'll head back to BIMC to get it properly disconnected. The Cancer Center said they usually try to get an in-home nurse assigned but insurance can be spotty about approval, and since I live in the city and only have to do it every other weekend, I figured I'll save them the trouble of asking.
If all goes well, then we repeat the chemo process every other Friday. The really good news is that the top side effects of the main chemo is numbness to cold (like, to the point where I feel like I have no hand), tiredness, and increase chance of infection. Mostly, the first two side effects dissipate after the medicine is delivered, but the increased risk of infection is something I'll have to deal with from this point forward. On the weekends I have the chemo, that pump will have to come along with me if I were to go anywhere. Supposedly the side effects aren't bad enough to where even though I'll have that pump, I won't be overly limited in what I can do. We'll see.
After the first treatment, assuming it takes as he expects, they'll add another medicine to the cocktail. Basically, it's a cherry on top that's not necessary, but if I take well to it it'll help. If I don't, then they can remove it without it affecting the course of action. The potential side effected added to this?
Let's just say that the feeling I had before the colonoscopy and MRI where I had to clean things out would be with me again. If that is severe, they'll stop using that medicine, but if it's occasional, we'll keep going so we can shrink this damn thing as best we can.
THIS PART IS IMPORTANT. REPEAT. THIS PART IS IMPORTANT. DO NOT SKIM PAST THIS IF YOU WANT TO VISIT ME.
The oncologist did not really get that serious about a lot of things. The one thing he did make sure to emphasize: the flu shot. Despite the medicine, he told me I have to get the flu shot to help inoculate myself against contracting it, and that goes for anyone who thinks you might even possibly visit, or if you will spend a significant time around me. Please get it, as I plan on getting mine today. Most places you work with offer it for free at this point. My wife is going to probably be enforcing this even harder than I will, so...get the shot!
OK, back to the normal blog.
That's as much info as I have for you now in terms of treatment and where things stand. I continue to be happy with the team over at BIMC as a potential miscommunication was handled great on Friday. There really seems to be an attitude of making sure I'm not just a number at this clinic. I'm eternally grateful for this.
Speaking of grateful...
I wanted to take some time to give one big "Thank you" to all of you. The reason I put the first message out in the blog was that I know I'm ridiculously lucky about having a lot of people who care about me and are concerned about what's happening. What I did not expect was just the sheer outpouring of love and affection that hit as soon as I hit "post" for that entry. The comments just kept coming on Facebook, enough to where I missed a whole section and had to go back to read them yesterday.
I wanted to respond to each and every one of them, just to say "Thanks" or give some sort of individual message, but I realized if I did that it would take forever. On top of that, others of you skipped Facebook all together and just reached out to me via text, e-mail, FB messenger, and I appreciated every single second of it.
It's overwhelming to know you've touched that many lives to where news like this makes them feel compelled to not just offer their well-wishes, but genuinely want to do something else to help. I have so many of you who want to be kept in the loop, that the line reaches around the metaphorical block. Simply on Wednesday alone, as I delivered the news to the smaller circle of people that I had let in, I spent three hours on the phone before posting this, and I've spent more on it since. I've had people who were currently dealing with cancer on their own, family members, people I've only met on-line, just untold amount of people reaching out to offer support, advice, love, positivity...you name it.
Keep it coming, is the best thing I can say. I may not take advantage of what you are offering because, by nature, I'm a private person, but I know that when you are offering it's coming from a true desire to want to help. One friend even apologized for offering unsolicited advice, which I hated they had to do because I know the place they are coming from. Most of you are scattered all throughout the country: the result of living in three areas, going to a university that sends its alumni out into the world, and the social media age where people can connect like never before. You hear this news and because you're my friend, you want to help in some way. I've been there.
Please understand if I don't take you up on your offer, or use the resources you offer, the gesture is still appreciated. This whole process is overwhelming to the nth degree, and in these first couple of weeks I've tried to narrow my focus to understanding what I'm facing, and to get the treatment going. Once the chemo starts, the pace will slow down dramatically. To some extent, it hasn't fully sunk in that I even have this. Maybe that's a good thing that it helps the optimism, and it helps me avoid thinking about the places where things could go wrong. I have no doubt there will be difficult days ahead, but with the love and support you've given...you have no idea how much of a help that will be to just continue..normalcy.
I mentioned this to a few of you, and I think I mentioned it Wednesday night: don't be afraid to reach out to me. If you have my number and you want to know what's going on, send a text. If you don't and want it, send me a FB message and I'll send it along, or if you want to just use FB messenger, do so. As this goes on, with a treatment only every other weekend and some sense of routine about it, there probably won't be much out there for me to post on here. It doesn't mean anything is wrong, and it may not mean you missed anything I posted. By all means, reach out to me. The sheer number of people who want to know what's going on simply means I can't get to everyone, and at some point it's going to be easier for me to just let you reach out.
So thank you, one and all for the support so far and the support that's about to come. It means so much. Together, we will #MAAGA
No comments:
Post a Comment