Okay, first infusion officially and completely done. I headed back to DFCI today to get the pump disconnected. A few minutes after 3pm it let out a high-pitched whine letting me know that it was empty. Luckily I was already in a comfy chair in the infusion center before that happened. My nurse showed me how to disconnect the tubing from my port, then flushed the port with saline, "locked" it with heparin, and de-accessed it (removed the needle). It is expected that I can do all that myself going forward, at home, to save me the trip in... I'm not convinced yet, but I'll get another training session next time.
So far it has not been terrible: some trouble sleeping the first night, thanks to one of the anti-nausea meds; noticeable yet tolerable nausea at various points since yesterday morning; not much of an appetite; generally tired and feeling kind of meh. I didn't take any of the additional prescribed nausea meds because I wanted to see how I really felt. After describing my last couple days to the nurse she advised me to take it - no reason not to eliminate that symptom completely if possible (I took it while I was there, and will do so through tomorrow). Now I wait and see how long it takes to bounce back.
I found the worst part to be the stupid pump. It reminded me too much of the hospital.
And now, maybe a nap...
Wednesday, September 30, 2015
Monday, September 28, 2015
Course 1 (of 12)
Well, the bad news is that I lost the fantastically detailed blog post that I wrote continuously since getting to DFCI this morning. The good news is that the worst thing that happened today was losing that blog post.
And as I'll never be able to recreate it, let me sum up:
- Arrived on time for labs only to be told they were running 45 minutes late. In reality it was more like an hour and 15 minutes. So the whole day was backed up a bit. It only really affected me eating lunch (which I did do eventually).
- I was more worried about my port behaving for the blood draw than almost anything else, believe it or not. But it did! Relief.
- The regimen I'm on is known as FOLFOX. After an appetizer of two different anti-nausea medications, the first two hours were an infusion of oxaliplatin (chemotherapy) and leucovorin (not chemo; a supplement that works with the chemo). The nurse advised me not to google these today as I was on info overload already - gentle readers, please do so on my behalf if you wish and I'll catch up with you in a day or two. The third is known as 5FU (that's right, eff you, cancer). I got a bolus of this at the infusion center and am now on the way home with my awesome pump full of f*you that will continuously administer the drug for about another 2 days.
I was told to expect to develop a sensitivity to cold basically anytime now, that will last a couple of days (thanks to the oxaliplatin). I was also told to expect fatigue to set in in another day or two. There are some other possible side effects but those are apparently the most common. At the moment I feel fine, and felt fine during the infusions... it's a waiting game.
So in the meantime, some pics - my view from my spot in the infusion room today:
Me getting infused:
And my new toy:
Let's see what tomorrow brings.
Friday, September 25, 2015
Out and about
I felt almost normal today... not like someone who received a stage IV cancer diagnosis and had two surgeries all in the last two months. I didn't sit around my house all day. Instead I did stuff normal people do all the time:
- I drove my car. First time since going back in the hospital the second time (over a month ago!). I'm glad to report I've not forgotten how.
- I got my hair cut. Fourth time chopping it off for Locks of Love. That's eight years of growing and cutting. Here are my braids for donation and my new look. Shortest and grayest one yet!
- I ate lunch out. It was just Au Bon Pain, but still, it was lunch out!
- I had an appointment for a breast ultrasound. I also had a "surprise" mammogram, as I was apparently due for one (but hadn't scheduled it). This was really nerve wracking; I wasn't sure if the portacath would be in the way, or the ostomy for that matter... sometimes you have to hold awkward positions against the machine, and I do not have a long torso, and just assumed all this would be in the way or would get pulled uncomfortably during all the boob mashing. In the end it wasn't that bad, but it did remind me of everything going on and I was all teary in between images. The ultrasound revealed lots of cysts but this wasn't really a surprise. Since I started regular mammograms, just two years ago, I've also had three ultrasounds and maybe 5-6 cysts aspirated (no bad results). I had one aspirated when I was 35 or 36 also - had an "early" mammogram as I had felt something, and thankfully it turned out to be nothing. (That traumatic experience resulted in an awesome de-stress / decompress dinner with my excellent friend Dean. Thanks again, Dean!). And since I've lost so much weight, the tissue was more dense than the last time around, which meant additional squishing and scanning to get a good look. Luckily, the doctor didn't see anything requiring aspiration this time so just another ultrasound for me in six months. Huge relief and glad to have this out of the way before treatment starts.
And then I came home and had a snack and watched some TV and all is well :) Looking forward to a relaxing weekend before heading back into the unknown.
- I drove my car. First time since going back in the hospital the second time (over a month ago!). I'm glad to report I've not forgotten how.
- I got my hair cut. Fourth time chopping it off for Locks of Love. That's eight years of growing and cutting. Here are my braids for donation and my new look. Shortest and grayest one yet!
- I ate lunch out. It was just Au Bon Pain, but still, it was lunch out!
- I had an appointment for a breast ultrasound. I also had a "surprise" mammogram, as I was apparently due for one (but hadn't scheduled it). This was really nerve wracking; I wasn't sure if the portacath would be in the way, or the ostomy for that matter... sometimes you have to hold awkward positions against the machine, and I do not have a long torso, and just assumed all this would be in the way or would get pulled uncomfortably during all the boob mashing. In the end it wasn't that bad, but it did remind me of everything going on and I was all teary in between images. The ultrasound revealed lots of cysts but this wasn't really a surprise. Since I started regular mammograms, just two years ago, I've also had three ultrasounds and maybe 5-6 cysts aspirated (no bad results). I had one aspirated when I was 35 or 36 also - had an "early" mammogram as I had felt something, and thankfully it turned out to be nothing. (That traumatic experience resulted in an awesome de-stress / decompress dinner with my excellent friend Dean. Thanks again, Dean!). And since I've lost so much weight, the tissue was more dense than the last time around, which meant additional squishing and scanning to get a good look. Luckily, the doctor didn't see anything requiring aspiration this time so just another ultrasound for me in six months. Huge relief and glad to have this out of the way before treatment starts.
And then I came home and had a snack and watched some TV and all is well :) Looking forward to a relaxing weekend before heading back into the unknown.
Wednesday, September 23, 2015
Lovanox and Oxycodone free!
Another one down and another one down... today was my last Lovanox injection (blood thinner). I'm now officially discharged from the visiting nurses. They were all wonderful - good listeners, compassionate, and thankfully not afraid of needles like me. Thank you, CareGroup Home Care, for taking such good care of me these last many weeks!
I'm also finally off the oxycodone. The last one I took was this past Saturday. Since then it's just been a little ibuprofen if I feel the need. In fact I just realized today I haven't taken anything, and took my walk already and everything. I will take that as a good sign.
I'm walking about a mile every day now. I'm still slow, but am improving, as the MapMyRun screenshot will attest. I'm also trying to get back to some simple yoga. After eight weeks of craziness I was appalled to discover I can no longer touch my toes!!! I used to be able to put my palms on the floor but now am a couple inches away from the floor all together. I also have a fear of raising my arms over my head, which I'm battling by raising my arms over my head every time thinking about it makes me nervous (all the time). This is in line with my mission to stand up straight. I'm getting better about it, though my default is still to hunch and protect the belly. Baby steps.
Otherwise - trying to relax these last few days before chemo begins and we get to know that unknown.
I'm also finally off the oxycodone. The last one I took was this past Saturday. Since then it's just been a little ibuprofen if I feel the need. In fact I just realized today I haven't taken anything, and took my walk already and everything. I will take that as a good sign.
I'm walking about a mile every day now. I'm still slow, but am improving, as the MapMyRun screenshot will attest. I'm also trying to get back to some simple yoga. After eight weeks of craziness I was appalled to discover I can no longer touch my toes!!! I used to be able to put my palms on the floor but now am a couple inches away from the floor all together. I also have a fear of raising my arms over my head, which I'm battling by raising my arms over my head every time thinking about it makes me nervous (all the time). This is in line with my mission to stand up straight. I'm getting better about it, though my default is still to hunch and protect the belly. Baby steps.
Otherwise - trying to relax these last few days before chemo begins and we get to know that unknown.
Monday, September 21, 2015
Chemo gets real...
I just scheduled my first chemo treatment for Monday 9/28 12:30pm. My oncologist has said it sometimes helps to have a date on the calendar, even if we end up moving it. I had called his office this morning to check in and see what date might make sense. Half an hour later the scheduler called me to get it on the books. She suggested either this Friday or next Monday as that was his next availability. I admit I had a small panic attack there on the phone... but then I said let's do Monday, and there it is.
She assured me there is no problem to push it out if I think I won't be ready. I don't know that I would every be ready -- how is anyone ready for chemotherapy? Now I have an appointment in my calendar that I can stare at and think about. Hoping that date will stick, as thinking about it for a whole other week might make the anxiety worse.
Aaaaggghhhh...
She assured me there is no problem to push it out if I think I won't be ready. I don't know that I would every be ready -- how is anyone ready for chemotherapy? Now I have an appointment in my calendar that I can stare at and think about. Hoping that date will stick, as thinking about it for a whole other week might make the anxiety worse.
Aaaaggghhhh...
Saturday, September 19, 2015
Catastrophizing
I mentioned in another post about the nerve blocks that I had for a few days post-op as part of my pain management, and how they were removed somewhat suddenly, and how anxious that made me. At that point, I had had enough of pain -- every little thing that had to happen prompted the question "Will it hurt?" And knowing that those blocks made a difference, I was especially worried I would plummet into some awful dark place where no drug could save me.
I said this in so many words to the anesthesiologist who was there to take them out. After assuring me that removing the small catheters wouldn't hurt a bit (it didn't) she told me about catastrophizing. I had never heard of this before. She told me, in a very direct and no-nonsense way, that this was not a path I wanted to go down, that always expecting the worst pain could really mess with your mind and potentially exaggerate how I experience pain, how it could turn into a chronic condition. She said all this while tending to the task at hand and let me know there was quite a bit of literature on the subject, if I was interested.
And when she was finished, she stayed for another ten minutes and gave me this awesome pep talk. I'm not sure she intended to but that's definitely what it felt like. She validated my anxiety to a certain extent; I can still see her standing in front of me, exclaiming, "Of course you're going to have some pain - they cut you up!" Then she talked about believing in your body's ability to heal, your ability to tolerate more than you think you can, your capacity to handle discomfort and pain when it happens, and not falling into the trap of expecting it to happen all the time. It sounds cheesy but her primary advice was to believe in yourself - to have confidence that the pain will not last forever, that you can manage it, that you will heal, and to believe this deep down and view each day of recovery (and beyond) through this lens.
I've been thinking about her a lot the last couple of days. I think I am nearly over my recovery hump, mostly because I'm thinking less about how I'll get through each day and more about the future. Soon I will have a new start date for chemotherapy and I'm already worried about what will happen when they push a bunch of toxic chemicals into my body. Maybe not pain, per se, but other side affects that will be tiring or annoying or uncomfortable or weird or scary, or all of the above. But there isn't any sense in worrying about it; whatever is going to happen will happen. If I want to eliminate the disease it's something I need to do.
I also know it's normal to be anxious and scared and depressed -- it's not even two months since the first visit to the ER, so much has happened and changed, so suddenly -- that's plenty to mess with your mind. I'm having my fair share of tears. And I'm trying to remember that hopefully this is the beginning of the end of this craziness. I'd love for whomever is reading this to help me remember that, too.
I said this in so many words to the anesthesiologist who was there to take them out. After assuring me that removing the small catheters wouldn't hurt a bit (it didn't) she told me about catastrophizing. I had never heard of this before. She told me, in a very direct and no-nonsense way, that this was not a path I wanted to go down, that always expecting the worst pain could really mess with your mind and potentially exaggerate how I experience pain, how it could turn into a chronic condition. She said all this while tending to the task at hand and let me know there was quite a bit of literature on the subject, if I was interested.
And when she was finished, she stayed for another ten minutes and gave me this awesome pep talk. I'm not sure she intended to but that's definitely what it felt like. She validated my anxiety to a certain extent; I can still see her standing in front of me, exclaiming, "Of course you're going to have some pain - they cut you up!" Then she talked about believing in your body's ability to heal, your ability to tolerate more than you think you can, your capacity to handle discomfort and pain when it happens, and not falling into the trap of expecting it to happen all the time. It sounds cheesy but her primary advice was to believe in yourself - to have confidence that the pain will not last forever, that you can manage it, that you will heal, and to believe this deep down and view each day of recovery (and beyond) through this lens.
I've been thinking about her a lot the last couple of days. I think I am nearly over my recovery hump, mostly because I'm thinking less about how I'll get through each day and more about the future. Soon I will have a new start date for chemotherapy and I'm already worried about what will happen when they push a bunch of toxic chemicals into my body. Maybe not pain, per se, but other side affects that will be tiring or annoying or uncomfortable or weird or scary, or all of the above. But there isn't any sense in worrying about it; whatever is going to happen will happen. If I want to eliminate the disease it's something I need to do.
I also know it's normal to be anxious and scared and depressed -- it's not even two months since the first visit to the ER, so much has happened and changed, so suddenly -- that's plenty to mess with your mind. I'm having my fair share of tears. And I'm trying to remember that hopefully this is the beginning of the end of this craziness. I'd love for whomever is reading this to help me remember that, too.
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