Last week, I got my teeth cleaned at the dentist. The hygienist who does that is so patient with me. I have a super hyper gag reflex now because of all the throwing up I did during the year of chemo. She commented on my lymphedema sleeve, so I told her all about that. She's so nice, her mom has had breast cancer, so she actually understands me being such a flake about stuff now, but I was able to get my teeth cleaned without going into panic mode because she kept nose booping me. The dentist is a cute little redhead who has a son a few years behind the youngest monkey in school and in the same district, so we always talk football, so all of that actually went well. They love it when I come in because they want to know what I'm cooking. (Wait until I mention I cooked a smoked turkey breast in the slow cooker--I bet they haven't thought of that one yet.) The other dentist is an older guy who always speaks to me, even though I'm not technically his patient.
Anyway, yesterday, I went to the oncologist by myself. (This is a bfd for me after the cancer related ptsd thing.) I got up and baked and took at least three dozen cookies for the onc. (Basically, I went by myself because the husband lost five weeks of paid vacation when he was laid off from the other job, so now he doesn't have time he can take off for this sort of thing.)
When the oncologist came into the exam room where I was, he sat down and asked me what was going on, so I told I was in for a visit so he could see I was still as mean as ever. He said if I wasn't still mean as ever, he'd be concerned about me.
I told him I was still taking the turmeric, but wanted to know if my knees were always going to scream at me if I tried going up or down stairs or was I stuck with that. He told me I'm stuck with that.
Then I told him about the porcine thyroid supplement I'd been taking and handed over the bottle. I told him I figured he either wouldn't object or he wouldn't like me taking it. He said if it worked for me, he doesn't have a problem with it. (This stuff isn't FDA approved, but he's okay with me taking it in spite of that because it makes my energy levels improve, go figure.)
I showed him my lympedema sleeve from Solidea Medical and told him it was so much more comfortable than the other products out there. I told him I need the occasional manual drainage done on my arm but the way the laws are written in this state and with the insurance, I can't have that done because the state and insurance dictate that I be put on an anctual physical therapy regimen to go with the drainage, even though I don't need physical therapy, which is frustrating because I only need the manual drainage when my arm flares up and that could be once every six weeks or once every six months, I never know. He told me that he couldn't do anything about the hoops the state and insurance want me to jump through, although if I could find a massage place that does "light" lymph drainage work, I could try that, but the insurance wouldn't cover it.
At that point, I mentioned that the kinesio taping did quite well for pain control and that my neighbor will tape my arm on occasion and that I can easily lose an inch from my upper arm within about twelve hours if she tapes me and that taping usually lasts three to four days. He said he'd seen that but he didn't know anything about it and since I was telling him about it, he was going to look it up and research it further. Then he told me I should start a breast cancer consulting business or something along those lines since I know so much. I told him I wasn't really qualified to do something like that and that's when he said that no matter how much the medical profession knows, they don't know what it's like to be the patient and that I do know a lot.
That's when I told him I had a group called Cancer Bitches and it was pretty much a worldwide group and he thought that was interesting.
I explained to him about the still throwing up on occasion thing that I still blame on chemo. I was finally able to articulate to him exactly what happens and said if he wanted me to go see a gastroenterologist, I would. I told him that sometimes when I start eating, I feel the top of my stomach knot up and that it's like my esophagus and stomach are on two different movements or are being uncoordinated together at the same time separately. When that happens, I take a fourth of a phenergan and if that helps, great, I keep eating. If it doesn't, I try another fourth of one to make a total of a half of one and then I can literally feel both the esophagus and my stomach relax and feel normal again. He asked me if I ever take a whole one and I started laughing and said "Sir, if I took a whole one, I'd be comatose for about six hours." He asked me if that worked for me, taking the phenergan that way and I said pretty much, so he told me that if that works for me, he has no objection to it and would I like to have more phenergan. I handed the bottle over and asked if that was okay, I wasn't dealing phenergan. He looked at the label and said he didn't think I was doing anything like that at all since the label on the bottle was over two years old, then he monkeyed around with the computer and sent in a refill to the pharmacy electronically.
We moved on to the topic of a PET scan, if that would be beneficial or not at this point since I'm coming up on four years from surgery in January. He said at one point, the risks of scans are not any longer outweighed by the benefits, so if I want a scan, he would order one for me once the health savings account total rolled over to an amount that would cover payment for the scan, or if I didn't want one, that was fine too, he was leaving that up to me. If, at any point, I feel like there's some sort of problem, he would, of course, order a scan. (Not unreasonable, I think.)
While he's wanted to see me once every three months and get me scanned once every six months, I've really stretched the time out because of the stress of anything medical related causes me. After poking and prodding on me here and there, he said he could confidently say I'm still NED and that I could come in once every six months now, but if I was going to keep bringing cookies to him, then maybe he should stick with the once every three month schedule to keep getting cookies more often.
We talked about a few more things, nothing major, but I pointed out that I'd come in by myself. He said please give his regards to my husband and I said I would. I told him I'd even managed to sleep a little bit. He said he understood this was a terrifying thing and it always would be and that people on his side of things just don't understand it like someone like me or other patients would. (Holy fuck, I'm going to try to find the best white chocolate chip macadamia nut cookie recipe for this man because I think he actually gets it and really deserves it.)
I thanked him and left, feeling like I could breathe again, and not have that borderline tunnel vision, can't breathe thing going on. (I only dropped the F bomb once, ladies.)
Ran home, let the dog out, crated him again since he's a bratlet and not trustworthy to be left loose in the house while people are gone, and then went to the eye doctor. I've seen him several times because Football Monkey needed an eye exam and glasses, but I liked him and since I was somewhat familiar with him, I was okay with getting my eyes examined by him. He's great because he explains everything very well and is a personable guy with a pic of his grandkids on the wall. They call him Opa, which he mentioned is German for grandfather. I guess I'll wind up going next week to pick out bifocals. (He said I could try a higher number on the over the counter reader glasses I've been wearing, or I could get a prescription for reader glasses from him, or I could go ahead and get a prescription for bifocals since I'm slightly astigmatic, it was up to me and he'd go along with whatever I wanted to do.)
Went by to speak with the horse person about an exchange of work for the occasional riding lesson and am waiting to hear back from her about that.
Anyway, yesterday, I went to the oncologist by myself. (This is a bfd for me after the cancer related ptsd thing.) I got up and baked and took at least three dozen cookies for the onc. (Basically, I went by myself because the husband lost five weeks of paid vacation when he was laid off from the other job, so now he doesn't have time he can take off for this sort of thing.)
When the oncologist came into the exam room where I was, he sat down and asked me what was going on, so I told I was in for a visit so he could see I was still as mean as ever. He said if I wasn't still mean as ever, he'd be concerned about me.
I told him I was still taking the turmeric, but wanted to know if my knees were always going to scream at me if I tried going up or down stairs or was I stuck with that. He told me I'm stuck with that.
Then I told him about the porcine thyroid supplement I'd been taking and handed over the bottle. I told him I figured he either wouldn't object or he wouldn't like me taking it. He said if it worked for me, he doesn't have a problem with it. (This stuff isn't FDA approved, but he's okay with me taking it in spite of that because it makes my energy levels improve, go figure.)
I showed him my lympedema sleeve from Solidea Medical and told him it was so much more comfortable than the other products out there. I told him I need the occasional manual drainage done on my arm but the way the laws are written in this state and with the insurance, I can't have that done because the state and insurance dictate that I be put on an anctual physical therapy regimen to go with the drainage, even though I don't need physical therapy, which is frustrating because I only need the manual drainage when my arm flares up and that could be once every six weeks or once every six months, I never know. He told me that he couldn't do anything about the hoops the state and insurance want me to jump through, although if I could find a massage place that does "light" lymph drainage work, I could try that, but the insurance wouldn't cover it.
At that point, I mentioned that the kinesio taping did quite well for pain control and that my neighbor will tape my arm on occasion and that I can easily lose an inch from my upper arm within about twelve hours if she tapes me and that taping usually lasts three to four days. He said he'd seen that but he didn't know anything about it and since I was telling him about it, he was going to look it up and research it further. Then he told me I should start a breast cancer consulting business or something along those lines since I know so much. I told him I wasn't really qualified to do something like that and that's when he said that no matter how much the medical profession knows, they don't know what it's like to be the patient and that I do know a lot.
That's when I told him I had a group called Cancer Bitches and it was pretty much a worldwide group and he thought that was interesting.
I explained to him about the still throwing up on occasion thing that I still blame on chemo. I was finally able to articulate to him exactly what happens and said if he wanted me to go see a gastroenterologist, I would. I told him that sometimes when I start eating, I feel the top of my stomach knot up and that it's like my esophagus and stomach are on two different movements or are being uncoordinated together at the same time separately. When that happens, I take a fourth of a phenergan and if that helps, great, I keep eating. If it doesn't, I try another fourth of one to make a total of a half of one and then I can literally feel both the esophagus and my stomach relax and feel normal again. He asked me if I ever take a whole one and I started laughing and said "Sir, if I took a whole one, I'd be comatose for about six hours." He asked me if that worked for me, taking the phenergan that way and I said pretty much, so he told me that if that works for me, he has no objection to it and would I like to have more phenergan. I handed the bottle over and asked if that was okay, I wasn't dealing phenergan. He looked at the label and said he didn't think I was doing anything like that at all since the label on the bottle was over two years old, then he monkeyed around with the computer and sent in a refill to the pharmacy electronically.
We moved on to the topic of a PET scan, if that would be beneficial or not at this point since I'm coming up on four years from surgery in January. He said at one point, the risks of scans are not any longer outweighed by the benefits, so if I want a scan, he would order one for me once the health savings account total rolled over to an amount that would cover payment for the scan, or if I didn't want one, that was fine too, he was leaving that up to me. If, at any point, I feel like there's some sort of problem, he would, of course, order a scan. (Not unreasonable, I think.)
While he's wanted to see me once every three months and get me scanned once every six months, I've really stretched the time out because of the stress of anything medical related causes me. After poking and prodding on me here and there, he said he could confidently say I'm still NED and that I could come in once every six months now, but if I was going to keep bringing cookies to him, then maybe he should stick with the once every three month schedule to keep getting cookies more often.
We talked about a few more things, nothing major, but I pointed out that I'd come in by myself. He said please give his regards to my husband and I said I would. I told him I'd even managed to sleep a little bit. He said he understood this was a terrifying thing and it always would be and that people on his side of things just don't understand it like someone like me or other patients would. (Holy fuck, I'm going to try to find the best white chocolate chip macadamia nut cookie recipe for this man because I think he actually gets it and really deserves it.)
I thanked him and left, feeling like I could breathe again, and not have that borderline tunnel vision, can't breathe thing going on. (I only dropped the F bomb once, ladies.)
Ran home, let the dog out, crated him again since he's a bratlet and not trustworthy to be left loose in the house while people are gone, and then went to the eye doctor. I've seen him several times because Football Monkey needed an eye exam and glasses, but I liked him and since I was somewhat familiar with him, I was okay with getting my eyes examined by him. He's great because he explains everything very well and is a personable guy with a pic of his grandkids on the wall. They call him Opa, which he mentioned is German for grandfather. I guess I'll wind up going next week to pick out bifocals. (He said I could try a higher number on the over the counter reader glasses I've been wearing, or I could get a prescription for reader glasses from him, or I could go ahead and get a prescription for bifocals since I'm slightly astigmatic, it was up to me and he'd go along with whatever I wanted to do.)
Went by to speak with the horse person about an exchange of work for the occasional riding lesson and am waiting to hear back from her about that.
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