Remember I mentioned the prickling/itching nerve-endings-firing thing I was having? Well it faded gradually and rarely ever happens now. Someone on the cancer group told me they had experienced this as well and it was caused by anemia. That would explain why it became less frequent until it has practically stopped all together after re-starting the aranesp shots and then upping my iron intake. I'm so glad it stopped in spite of the onc blowing me off when I told him about it.
Now, it's time to stop posting and concentrate on figuring out what to do about Christmas shopping.
Sunday, December 03, 2006
What Else is New?
I got a glove and a sleeve for my swollen hand, but honestly, I think it makes it worse. I think the glove is too tight around the wrist and so it actually increases the swelling. The only time it works well is when I’m riding my bike. I think this is due to the pressure on my palm from gripping the handlebar.
In addition to the massage, the physical therapist began putting my hand in this sleeve/pump contraption for thirty minutes when I went for the therapy. It's kind of like a blood pressure cuff except it covers the whole arm including the hand. It has air chambers all the way up that fill with air in succession to squeeze the lymph from your hand up your arm into your torso. My problem is so chronic that I got one of these to use at home pretty much daily. It’s such a relief and my hand does seem to be getting better. Luke calls it Big Blue. I’ll get him to take a picture and post it and you’ll see why. I use this thing for about an hour a day. It's pretty quiet, considering, so I can watch TV or read while I'm pumping.
I’m still supposed to wrap my hand every other day or so. I can’t sleep in the bandages, though. It cuts off something and causes a sort of pain or discomfort or … well I don’t know the words to describe what it feels like. It’s a feeling that things are not quite right, as if my body is communicating that it’s dangerous to lay down with the bandages on my arm pinching … I don’t know what. I know that doesn’t exactly make sense, but if you felt this you’d understand.
We had our annual Christmas Festival yesterday. The weather finally turned cold, but not freezing, so it was perfect. The live music was great and the fireworks show was probably the best we've had in a number of years. They combined music and a light show with the fireworks. They’ve had music play with the fireworks before, but the sound system wasn't that great and it was never quite in sync. This year the sound was spectacular, the lights, the music and the fireworks were on the money. It had me laughing with delight through the whole show.
In addition to the massage, the physical therapist began putting my hand in this sleeve/pump contraption for thirty minutes when I went for the therapy. It's kind of like a blood pressure cuff except it covers the whole arm including the hand. It has air chambers all the way up that fill with air in succession to squeeze the lymph from your hand up your arm into your torso. My problem is so chronic that I got one of these to use at home pretty much daily. It’s such a relief and my hand does seem to be getting better. Luke calls it Big Blue. I’ll get him to take a picture and post it and you’ll see why. I use this thing for about an hour a day. It's pretty quiet, considering, so I can watch TV or read while I'm pumping.
I’m still supposed to wrap my hand every other day or so. I can’t sleep in the bandages, though. It cuts off something and causes a sort of pain or discomfort or … well I don’t know the words to describe what it feels like. It’s a feeling that things are not quite right, as if my body is communicating that it’s dangerous to lay down with the bandages on my arm pinching … I don’t know what. I know that doesn’t exactly make sense, but if you felt this you’d understand.
We had our annual Christmas Festival yesterday. The weather finally turned cold, but not freezing, so it was perfect. The live music was great and the fireworks show was probably the best we've had in a number of years. They combined music and a light show with the fireworks. They’ve had music play with the fireworks before, but the sound system wasn't that great and it was never quite in sync. This year the sound was spectacular, the lights, the music and the fireworks were on the money. It had me laughing with delight through the whole show.
Changing Oncs
Okay, so I said was going to come back and talk about the difficulty in changing oncologists and didn’t. What can I say? In my defense… heck, I have no defense, I just haven’t gotten around to doing it yet. And life marches on.
Since so much time has gone by and the sting has faded I’ll give a condensed version of events. After my check-up with the original onc I was so disgusted (the man really had a way of casting dark clouds over an otherwise sunshiny day) I decided there was no way I could go back to him. Ever. If the cancer comes back I didn’t want to be in a position to have to have him treat me.
I got a list of recommendations from my gynecologist. She said I shouldn’t need a referral. I picked a woman from the list and had my primary care doc send a referral anyway. Then I called. The girl told me I would need a referral from the oncologist, that one from the gynecologist or my primary doc wouldn’t do. This was nuts, I thought, because why would my oncologist refer me to another oncologist? I explained this to the girl who insisted that was how it was done. I would need to have my records sent and a referral from the other onc.
I bet you can guess what happened next. Speaking with the old onc’s receptionist I was informed (in a “patients are so stupid” tone) that oncologists don’t refer patients to other oncologists. I asked her to send me a release for my records and ask the onc for the referral because I was changing oncs whatever it took. She said she’d tell him I wanted a second opinion.
Fast forward a week. Back on the phone with the potential onc (henceforth to be known as the PO)’s receptionist: The PO won’t agree to see me until she gets my medical records. Yes they got the referral from my primary care doc, but that wasn’t good enough, still waiting on the old onc.
More calls to old onc’s office and medical records dept. Assurances.
A week or two goes by. PO got the referral, but not the records. The old cancer center insists they sent those weeks ago. (Just a side note here. My primary doc told me when this started to call the cancer center, tell them when I’d be there to pick up my records, drive to Shreveport and get my records in person. Otherwise, she said, they’d play games and drag it out. She was prophetic.) One way or another I managed to get them resent (is that a word?).
Fast forward another week or so. The PO’s office now has the records. The girl tells me their procedure is this. They get the referral, they get the records, and then the onc group meets and discusses your case and decides whether they will see you or not.
Another week. The PO’s nurse calls and tells me the PO has agreed to see me, but only for a second opinion and not to take me as a new patient.
Yes, I nearly lost it. I take that back, I did lose it. I asked, didn’t the onc even look at my records? Because if she had and if anyone I spoke to on the phone had paid an ounce of attention they would know that I was finished with treatment and NED. I didn’t need a second opinion, I needed a new onc for follow-ups and in case the cancer came back!
She said, and this was horrifying to hear, NO onc is going to take a patient away from another onc. That I wouldn’t be able to change oncs unless I went to another city. What?! I told her I could not go back to the other onc. He made me feel hopeless. He didn’t listen to me. He didn’t respect me or my opinion concerning my own health. Something melted in her cold little heart because she said she’d give my records to the other oncs’ nurses (in that group) and see if any of them could get their oncs to agree to see me.
Enter Dr. V. A young onc that didn’t yet have a full patient load agreed to take me on. I made an appointment, which by this time, was right on schedule for my three month checkup. His nurse was a sweetheart and he had not yet lost the compassion that perhaps led him to this profession.
Funny thing though, my records had somehow gotten lost between the onc’s nurse that refused to see me and Dr. V’s nurse. They were quite happy to learn I could give them a complete history of my treatment including which chemos I had, the surgery date, the last date of treatment, the meds I took, the transfusions, everything, and all the kidney stuff too. Nurse Nancy (don’t you love that?) said I was a dream patient and Dr. V said, “Wow, you’re great! It’s such a relief to have a patient that knows the terminology and understands their treatment.” He said he recently had a patient come to see him that had had brain surgery, but didn’t know why. Hmmm…
I told him one big reason for changing oncs was that the old onc was so hard to get info out of and got annoyed when I asked questions, acting as if I was questioning his judgment every time I asked him to explain something. Dr. V assured me that he encouraged questions and I should feel free to ask anything as many times as I needed to because he preferred his patients to be fully informed.
He was also surprised I was still taking the aranasp shots every two weeks. I was still taking the shots because the last time I’d seen the old onc I was still anemic and I was tired all the time. The old onc said the chemo had advanced my kidney disease causing the anemia and I may have to have the shots indefinitely. Dr. V. did the blood tests and said I wasn’t anemic anymore. I told him I had had the shot about six days before the appointment, and that was probably the reason the blood work was good and I was concerned that my numbers (and energy) would drop in a week as the effects of the shot wore off. He apparently didn’t think it was a good idea to stay on the shot, though. He told me to try taking iron supplements instead, two a day rather than one. And to call him if that didn't work. Well he was right. I haven’t had any trouble and I just knew I would lose all energy and strength by the third week.
He gave me a bunch of stuff that would have been useful to have when this all began including a cookbook with a chart showing what was good to eat during different phases of the chemo cycle to keep up strength, counteract side-effects etc. This reminded me that when I asked my old onc for nutritional advice or assistance his response was, “You use the internet, don’t you?” Weak and tired, suffering from chemo-brain, I was going to sift through all the extraneous info on the internet cancer sites and compile a menu?
I think I’ll like this new onc.
At this point I know what you’re thinking. This is the short version?
Yep.
Since so much time has gone by and the sting has faded I’ll give a condensed version of events. After my check-up with the original onc I was so disgusted (the man really had a way of casting dark clouds over an otherwise sunshiny day) I decided there was no way I could go back to him. Ever. If the cancer comes back I didn’t want to be in a position to have to have him treat me.
I got a list of recommendations from my gynecologist. She said I shouldn’t need a referral. I picked a woman from the list and had my primary care doc send a referral anyway. Then I called. The girl told me I would need a referral from the oncologist, that one from the gynecologist or my primary doc wouldn’t do. This was nuts, I thought, because why would my oncologist refer me to another oncologist? I explained this to the girl who insisted that was how it was done. I would need to have my records sent and a referral from the other onc.
I bet you can guess what happened next. Speaking with the old onc’s receptionist I was informed (in a “patients are so stupid” tone) that oncologists don’t refer patients to other oncologists. I asked her to send me a release for my records and ask the onc for the referral because I was changing oncs whatever it took. She said she’d tell him I wanted a second opinion.
Fast forward a week. Back on the phone with the potential onc (henceforth to be known as the PO)’s receptionist: The PO won’t agree to see me until she gets my medical records. Yes they got the referral from my primary care doc, but that wasn’t good enough, still waiting on the old onc.
More calls to old onc’s office and medical records dept. Assurances.
A week or two goes by. PO got the referral, but not the records. The old cancer center insists they sent those weeks ago. (Just a side note here. My primary doc told me when this started to call the cancer center, tell them when I’d be there to pick up my records, drive to Shreveport and get my records in person. Otherwise, she said, they’d play games and drag it out. She was prophetic.) One way or another I managed to get them resent (is that a word?).
Fast forward another week or so. The PO’s office now has the records. The girl tells me their procedure is this. They get the referral, they get the records, and then the onc group meets and discusses your case and decides whether they will see you or not.
Another week. The PO’s nurse calls and tells me the PO has agreed to see me, but only for a second opinion and not to take me as a new patient.
Yes, I nearly lost it. I take that back, I did lose it. I asked, didn’t the onc even look at my records? Because if she had and if anyone I spoke to on the phone had paid an ounce of attention they would know that I was finished with treatment and NED. I didn’t need a second opinion, I needed a new onc for follow-ups and in case the cancer came back!
She said, and this was horrifying to hear, NO onc is going to take a patient away from another onc. That I wouldn’t be able to change oncs unless I went to another city. What?! I told her I could not go back to the other onc. He made me feel hopeless. He didn’t listen to me. He didn’t respect me or my opinion concerning my own health. Something melted in her cold little heart because she said she’d give my records to the other oncs’ nurses (in that group) and see if any of them could get their oncs to agree to see me.
Enter Dr. V. A young onc that didn’t yet have a full patient load agreed to take me on. I made an appointment, which by this time, was right on schedule for my three month checkup. His nurse was a sweetheart and he had not yet lost the compassion that perhaps led him to this profession.
Funny thing though, my records had somehow gotten lost between the onc’s nurse that refused to see me and Dr. V’s nurse. They were quite happy to learn I could give them a complete history of my treatment including which chemos I had, the surgery date, the last date of treatment, the meds I took, the transfusions, everything, and all the kidney stuff too. Nurse Nancy (don’t you love that?) said I was a dream patient and Dr. V said, “Wow, you’re great! It’s such a relief to have a patient that knows the terminology and understands their treatment.” He said he recently had a patient come to see him that had had brain surgery, but didn’t know why. Hmmm…
I told him one big reason for changing oncs was that the old onc was so hard to get info out of and got annoyed when I asked questions, acting as if I was questioning his judgment every time I asked him to explain something. Dr. V assured me that he encouraged questions and I should feel free to ask anything as many times as I needed to because he preferred his patients to be fully informed.
He was also surprised I was still taking the aranasp shots every two weeks. I was still taking the shots because the last time I’d seen the old onc I was still anemic and I was tired all the time. The old onc said the chemo had advanced my kidney disease causing the anemia and I may have to have the shots indefinitely. Dr. V. did the blood tests and said I wasn’t anemic anymore. I told him I had had the shot about six days before the appointment, and that was probably the reason the blood work was good and I was concerned that my numbers (and energy) would drop in a week as the effects of the shot wore off. He apparently didn’t think it was a good idea to stay on the shot, though. He told me to try taking iron supplements instead, two a day rather than one. And to call him if that didn't work. Well he was right. I haven’t had any trouble and I just knew I would lose all energy and strength by the third week.
He gave me a bunch of stuff that would have been useful to have when this all began including a cookbook with a chart showing what was good to eat during different phases of the chemo cycle to keep up strength, counteract side-effects etc. This reminded me that when I asked my old onc for nutritional advice or assistance his response was, “You use the internet, don’t you?” Weak and tired, suffering from chemo-brain, I was going to sift through all the extraneous info on the internet cancer sites and compile a menu?
I think I’ll like this new onc.
At this point I know what you’re thinking. This is the short version?
Yep.
Sunday, September 24, 2006
Can you believe it's September?
My hand has swollen from lymphedema. I cut myself and shortly thereafter it swelled. I elevated it as much as I could, but it wouldn't go down. The surgeon told me to just keep elevating. I asked him about therapy for it (something I had read about)and he waved that idea off and said we could try that later, just give it more time. I'm frustrated all over again with these doctors. They don't seem to care how any of this affects your life and you have to fight to find a way to improve your situation.
After another week I couldn't stand it anymore (it had been swollen for weeks and I was having difficulty typing) so I called the physical therapist at the radiation onc's office. She got an order from that onc and I've been driving to Alex two or three times a week for four or five weeks now for therapy and to have my hand/arm wrapped. It's looking a lot better and hopefully I'll get a sleeve/glove next week and won't have to wrap it anymore.
The wrapping looks like a burn wrap with gauze around my fingers and a bandage that goes around my hand and all the way up to my shoulder. You wouldn't believe how many perfect strangers ask what happened. It doesn't come off as rude, so much as honest open concern. Like they can't help it. As if they end the question with "you poor thing!"
But it is tiresome. I mean, do I really want to go into what the bandage is all about? I think some people that mention it don't so much want to know what happened, but feel obligated to ask. Like the waiter in the Mexican restaurant who waits on me several times a month. He knows my hand was fine last week so maybe he feels he's being rude if he doesn't ask.
One time about the third time that day someone said, "Oh, what happened to your hand?" I don't know what came over me. The look of concern (like I said, it looks like a horrible burn wrap) and horror on her face was too much and I blurted out, "This? It's nothing. It isn't real. It's a trick." And I waved my hand to show it wasn't hurt. The concern turned to confusion. Then I felt bad. All I could do was shrug and say, "long story."
Something terrible just happened. I've been posting for over an hour. I explained all the problems with changing oncologists and such and edited and oh, no! I hit spell check and somehow everything I typed after the above disappeared!
I can't retype it now, I have somewhere to be in twenty minutes and I still have to wrap my arm.
I'll try to remember it all and add it later. Bummer.
My hand has swollen from lymphedema. I cut myself and shortly thereafter it swelled. I elevated it as much as I could, but it wouldn't go down. The surgeon told me to just keep elevating. I asked him about therapy for it (something I had read about)and he waved that idea off and said we could try that later, just give it more time. I'm frustrated all over again with these doctors. They don't seem to care how any of this affects your life and you have to fight to find a way to improve your situation.
After another week I couldn't stand it anymore (it had been swollen for weeks and I was having difficulty typing) so I called the physical therapist at the radiation onc's office. She got an order from that onc and I've been driving to Alex two or three times a week for four or five weeks now for therapy and to have my hand/arm wrapped. It's looking a lot better and hopefully I'll get a sleeve/glove next week and won't have to wrap it anymore.
The wrapping looks like a burn wrap with gauze around my fingers and a bandage that goes around my hand and all the way up to my shoulder. You wouldn't believe how many perfect strangers ask what happened. It doesn't come off as rude, so much as honest open concern. Like they can't help it. As if they end the question with "you poor thing!"
But it is tiresome. I mean, do I really want to go into what the bandage is all about? I think some people that mention it don't so much want to know what happened, but feel obligated to ask. Like the waiter in the Mexican restaurant who waits on me several times a month. He knows my hand was fine last week so maybe he feels he's being rude if he doesn't ask.
One time about the third time that day someone said, "Oh, what happened to your hand?" I don't know what came over me. The look of concern (like I said, it looks like a horrible burn wrap) and horror on her face was too much and I blurted out, "This? It's nothing. It isn't real. It's a trick." And I waved my hand to show it wasn't hurt. The concern turned to confusion. Then I felt bad. All I could do was shrug and say, "long story."
Something terrible just happened. I've been posting for over an hour. I explained all the problems with changing oncologists and such and edited and oh, no! I hit spell check and somehow everything I typed after the above disappeared!
I can't retype it now, I have somewhere to be in twenty minutes and I still have to wrap my arm.
I'll try to remember it all and add it later. Bummer.
Tuesday, July 18, 2006
First three month checkup
I fooled around and didn't find a new onc so I had to go back to Dr. No-bedside-manner.
Good news is no signs of problems in the cancer department.
Bad news: creatinine is 1.8. Very depressing. And I'm pretty anemic. Onc says it's because my kidney's are getting worse. They aren't stimulating the bone marrow to produce red blood cells.
Well that explains why I'm still so tired, whether I sleep 6, 8 or 10 hours a night.
Now I have to have the aranesp shots every two weeks again.
Well that's life, isn't it?
Good news is no signs of problems in the cancer department.
Bad news: creatinine is 1.8. Very depressing. And I'm pretty anemic. Onc says it's because my kidney's are getting worse. They aren't stimulating the bone marrow to produce red blood cells.
Well that explains why I'm still so tired, whether I sleep 6, 8 or 10 hours a night.
Now I have to have the aranesp shots every two weeks again.
Well that's life, isn't it?
Saturday, July 01, 2006
Life marches on!
I can't believe I forgot to post about my last doctor appointment and scans. The truth is when I finished treatment I didn't want anything more to do with anything cancer! Not even this blog.
Much time has passed, but I'll briefly fill in the details.
Had PET and CT scans. I am officially NED!! That's a good thing. It means no evidence of disease. I saw the onc and he gave me this wonderful news, told me to come back in three months and asked if I had any questions or problems. That's when I explained to him about the prickling/itching nerve-endings-firing thing I have now when I either get stressed or too hot. (Lord help me make through Louisiana summer - which is going to be all year round with the global warming that G.B. says doesn't exist). His response (a-hole) was, say it with me, "Chemo doesn't cause that." He said he gets that all the time if he wears too many sweaters, etc, blah, blah, blah. I told him it wasn't prickly heat, which is what he was implying, but he didn't believe me. "Yes, yes," he said, "That's happens to everyone."
"No," I said, "This isn't like that." But he doesn't listen. We were very close to raising our voices at each other. I simply have to find a new onc. On the day I should have been elated with the news I left his office frustrated. This cannot be good for my health.
I also saw my nephrologist. Good news there too. It looks like my creatinine is staying at about 1.4 which is a bit high for normal kidneys, but nothing to worry about it. It had gotten all the way up to 1.9 while on the chemo and there was some fear the chemo might do permanent damage. My cholesterol is still high, but I can't take the meds because it affects my liver function. Let's face it, I got a lemon for a body. I think the key to everything is going to be to lose weight.
The months have passed by. Jeremy graduated from high school, which nearly proved to be my undoing. THIS, not cancer treatment, is what caused me to need antidepressants. Can you believe it? He'll be going away to college in less than two months. I keep telling myself I should look forward to having that back room for myself, but I'm still quite anxious about the whole thing. I should have had more children! Or not!
I've gone back to 10 hr days/4 day weeks at work. They gave us Monday, July 3 off just because we have the 4th off. That gives me a 5 day weekend, Friday-Tuesday. Can't beat that!
Next Thursday it's time for my follow-up with the radiation oncologist. I'm going to ask him to recommend a new chemo onc to replace Dr. No-Bedside-Manner. I've got to pick one soon or go back to the old guy as July is my third month.
I think I'm shaking most of the chemo-brain problem. I'm able to think again and remember words and I haven't stuttered in a while. Judging by Luke's reactions I'd say my sense of humor is normalizing too. I tried to hang on to the humor while going through this, and I believe the experience of it would have been worse without it, but I did lose my quickness and some of my wit. Now I'm wise-cracking again and Luke is saying things like, "THAT'S my Dawn! I knew you'd come back!"
The good thing that happened today: They had soft pretzels for sale when we went for groceries this morning, which was good because we hadn't had any breakfast.
Things I want to do: I still want to sky dive and parasail. But most of all I want to get physical again and get back into shape.
Much time has passed, but I'll briefly fill in the details.
Had PET and CT scans. I am officially NED!! That's a good thing. It means no evidence of disease. I saw the onc and he gave me this wonderful news, told me to come back in three months and asked if I had any questions or problems. That's when I explained to him about the prickling/itching nerve-endings-firing thing I have now when I either get stressed or too hot. (Lord help me make through Louisiana summer - which is going to be all year round with the global warming that G.B. says doesn't exist). His response (a-hole) was, say it with me, "Chemo doesn't cause that." He said he gets that all the time if he wears too many sweaters, etc, blah, blah, blah. I told him it wasn't prickly heat, which is what he was implying, but he didn't believe me. "Yes, yes," he said, "That's happens to everyone."
"No," I said, "This isn't like that." But he doesn't listen. We were very close to raising our voices at each other. I simply have to find a new onc. On the day I should have been elated with the news I left his office frustrated. This cannot be good for my health.
I also saw my nephrologist. Good news there too. It looks like my creatinine is staying at about 1.4 which is a bit high for normal kidneys, but nothing to worry about it. It had gotten all the way up to 1.9 while on the chemo and there was some fear the chemo might do permanent damage. My cholesterol is still high, but I can't take the meds because it affects my liver function. Let's face it, I got a lemon for a body. I think the key to everything is going to be to lose weight.
The months have passed by. Jeremy graduated from high school, which nearly proved to be my undoing. THIS, not cancer treatment, is what caused me to need antidepressants. Can you believe it? He'll be going away to college in less than two months. I keep telling myself I should look forward to having that back room for myself, but I'm still quite anxious about the whole thing. I should have had more children! Or not!
I've gone back to 10 hr days/4 day weeks at work. They gave us Monday, July 3 off just because we have the 4th off. That gives me a 5 day weekend, Friday-Tuesday. Can't beat that!
Next Thursday it's time for my follow-up with the radiation oncologist. I'm going to ask him to recommend a new chemo onc to replace Dr. No-Bedside-Manner. I've got to pick one soon or go back to the old guy as July is my third month.
I think I'm shaking most of the chemo-brain problem. I'm able to think again and remember words and I haven't stuttered in a while. Judging by Luke's reactions I'd say my sense of humor is normalizing too. I tried to hang on to the humor while going through this, and I believe the experience of it would have been worse without it, but I did lose my quickness and some of my wit. Now I'm wise-cracking again and Luke is saying things like, "THAT'S my Dawn! I knew you'd come back!"
The good thing that happened today: They had soft pretzels for sale when we went for groceries this morning, which was good because we hadn't had any breakfast.
Things I want to do: I still want to sky dive and parasail. But most of all I want to get physical again and get back into shape.
Monday, March 20, 2006
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