Food doesn't taste right. I seldom get hungry. When something does taste good, I tend to eat all of what is in front of me. Then I get nauseous because I've eaten too much. And here's the really odd thing, chocolate doesn't even sound good most of the time.
I ordered pizza today. It tasted ok but leaves the usual bad after-taste. The experts suggest salt water rinses to keep taste buds healthy (and to prevent mouth sores). After swishing, things taste ok for a bite or two. It's very discouraging.
A lot of you have dieted at some point in your life. The diet experts recommend 8 glasses of water per day to help you to stay hydrated and to help with eating less. Fill your stomach with water and you will eat less. I'm told to drink 8-10 glasses of fluids (some should be water) every day AND they still want me to eat. This seems counterintuitive. It's very difficult to accomplish. I miss liking food! I want to enjoy an almond joy or mounds bar (because sometimes you feel like a nut and sometimes you don't). I ate one a few days ago and it wasn't bad but it wasn't great either. It's just so sad.
Yes, I know I should be grateful that treatment is working and I should be cancer-free. Yes, I know it's only temporary. But seriously, it sucks. (I can't always maintain a positive attitude)
Saturday, June 29, 2013
some normalcy
Last night, Jennifer and I went to see Helen in "Sound of Music" at LaComedia. On the exasperating drive there, during dinner, during intermission, and during the drive home, Jennifer and I talked about so many things - but not about my cancer. It felt so normal!! Helen had dinner with us and shared a lot of back stage information. I know I'm often the one to bring my illness into a conversation (it's just always on my mind) but it felt so good to ignore it last night. The show was fair. Helen was awesome!!! She has such a beautiful voice and she really nailed her character!
I worked this morning. Did I tell you that I work with wonderful people? I do. My regular Saturday patients are pretty cool too.
So now I'm back home. And I have some more normal things to do. I need to clean my kitchen and pay some bills. Not all normal is fun!
I worked this morning. Did I tell you that I work with wonderful people? I do. My regular Saturday patients are pretty cool too.
So now I'm back home. And I have some more normal things to do. I need to clean my kitchen and pay some bills. Not all normal is fun!
Thursday, June 27, 2013
Good Numbers
CA125 is something in the blood that is an indicator for ovarian and other female reproductive cancers. It's similar to PSA for prostate cancer in men, although it isn't used as a screening tool. My CA125 was 260 in the hospital and down around 150ish at my first follow-up appointment. The result from last week's draw is 23. (or was it 28? I have such a horrible memory) Either way, it's no longer printed in red (indicating an abnormality) on the report. It is within normal range. YAY!
The girls went with me today to the patient care plan conference with the nurse practitioner. We didn't learn anything to new about the plan. Apparently, she and Dr. Partridge had considered only doing 4 treatments, but with the gunk in my lungs, decided to stick with six. I can't really say I was disappointed because I didn't know fewer than six was ever an option. The intent of my treatment is adjuvant, curative. Adjuvant refers treatment after the initial treatment. In this case, chemotherapy. The initial treatment was surgery. Curative means aimed at eradicating the disease. There was a time, before the lung biopsy, that we thought there was a chance that the goal would be remission. "Curative" is a much better word.
Everyone is a bit worried about neuropathy. The pins and needles itching of the palms of my hands and soles of my feet are signs of peripheral neuropathy. The Doctor will be watching that very closely. If the neuropathy progresses, I could end up with permanent nerve damage causing numbness in my hands and feet. Worsening symptoms could possibly cut short the number of treatments. So far, the itching subsides between treatments. Every day, I poke at my fingers with a fingernail or sharp instrument to make sure I still have feeling.
After an early dinner at O'Charley's with the girls, I went to dance class. I really enjoy helping with the class. It's frustrating though because dancing comes so easily to me and I have trouble explaining things to the students. They don't often get that the music will tell you when to start and things of that nature. Add to that the fact that I know nothing about leading and I'm not a whole lot of help to the men in the class. It's fun though and I get private dance time before class. I am learning to Tango. There are two styles of Tango: Argentine, which is the one we all think of with bodies touching and lots of sensual moves and American, not as sexy but similar moves. I am learning American.
For those of you who don't know, my dance partner and instructor is a 66 year old man who has had two strokes. He has some balance and vision problems but still dances quite well. We don't dance the bolero and he probably couldn't do Argentine Tango because of all of the lunging. My brother met him in the hospital and I believe he was quite surprised to see him walk with his white/red-tipped walking cane. In one of the classes, both of the women taking the class are breast cancer survivors. And here I am kicking ovarian cancer's ass.
I can't sleep. I've never been a good sleeper so I can't really blame it on Cancer/Chemo. For example, I'm tired right now but when I tried to sleep, I just tossed and turned. And this is after Benadryl and Ativan.
But it is late, and I do have to go to work in the morning.
The girls went with me today to the patient care plan conference with the nurse practitioner. We didn't learn anything to new about the plan. Apparently, she and Dr. Partridge had considered only doing 4 treatments, but with the gunk in my lungs, decided to stick with six. I can't really say I was disappointed because I didn't know fewer than six was ever an option. The intent of my treatment is adjuvant, curative. Adjuvant refers treatment after the initial treatment. In this case, chemotherapy. The initial treatment was surgery. Curative means aimed at eradicating the disease. There was a time, before the lung biopsy, that we thought there was a chance that the goal would be remission. "Curative" is a much better word.
Everyone is a bit worried about neuropathy. The pins and needles itching of the palms of my hands and soles of my feet are signs of peripheral neuropathy. The Doctor will be watching that very closely. If the neuropathy progresses, I could end up with permanent nerve damage causing numbness in my hands and feet. Worsening symptoms could possibly cut short the number of treatments. So far, the itching subsides between treatments. Every day, I poke at my fingers with a fingernail or sharp instrument to make sure I still have feeling.
After an early dinner at O'Charley's with the girls, I went to dance class. I really enjoy helping with the class. It's frustrating though because dancing comes so easily to me and I have trouble explaining things to the students. They don't often get that the music will tell you when to start and things of that nature. Add to that the fact that I know nothing about leading and I'm not a whole lot of help to the men in the class. It's fun though and I get private dance time before class. I am learning to Tango. There are two styles of Tango: Argentine, which is the one we all think of with bodies touching and lots of sensual moves and American, not as sexy but similar moves. I am learning American.
For those of you who don't know, my dance partner and instructor is a 66 year old man who has had two strokes. He has some balance and vision problems but still dances quite well. We don't dance the bolero and he probably couldn't do Argentine Tango because of all of the lunging. My brother met him in the hospital and I believe he was quite surprised to see him walk with his white/red-tipped walking cane. In one of the classes, both of the women taking the class are breast cancer survivors. And here I am kicking ovarian cancer's ass.
I can't sleep. I've never been a good sleeper so I can't really blame it on Cancer/Chemo. For example, I'm tired right now but when I tried to sleep, I just tossed and turned. And this is after Benadryl and Ativan.
But it is late, and I do have to go to work in the morning.
Wednesday, June 26, 2013
I'm Back!
April 30th I met my oncologist, Dr.Suzanne Partridge. Again, she is wonderful. Like Dr. Bowling, she is straight-forward and empathetic. We discussed my case. Initially, Dr. Bowling thought I should have a PET scan before starting chemo because of the nodules in my lung but Dr. Partridge thought it could wait. She said that it could "light up" even if it isn't cancer and she didn't think it was. But she did want me to have a chest CT. We scheduled the scan for May 7th and my first treatment for May 9th. I wanted to start sooner but she wanted me to be at least 4 weeks post op - so I waited.
During this time, I was steadily improving from the surgery - and getting BORED!! But patience is a virtue and I so wanted to be virtuous. I did buy a great wig because the doctor said I could expect to lose my hair. A girl scout is always prepared...
May 7th arrived and I went for my CT scan. Here's the thing. Patients can now access their medical records online. The test results for the CT were posted before I met with Dr. Partridge and, since I expected the results to be the same as they were in the hospital, I looked at them. BAD MOVE! Remember when I said I'm a big wuss when it comes to bad news? The results said the nodules were too numerous to count and consistent with metastasis. I became hysterical and called Jennifer and Elizabeth. They both dropped what they were doing and came over. (they are the greatest kids anyone could ever ask for) They told me that I could whip that into remission and I decided to pretend to believe it.
When I saw Dr. Partridge on the 9th, she was very unhappy that I had seen the results before she had a chance to discuss them with me. She was still skeptical that the cancer had metastasized to my lungs, or that it was a new primary site, so she ordered the PET to be done the week after my treatment. Needless to say, I was anxious and Ativan became my new best friend.
CHEMO: Chemo day is boring. The girls went with me for my first treatment. We first met with Dr. Partridge and she reviewed my CT results with me and discussed what was going to happen that day. I chose a recliner in the treatment room and settled in for the day. The nurse started an IV (third try) and the pre-meds were hung. Jennifer needed to go teach a class but Elizabeth stayed until the room started to fill up with patients. There aren't any "visitor" chairs. When Elizabeth was ready to leave, she went to my house to get my computer, bought me a chocolate milkshake at Steak and Shake and then left to do her own thing. I read, watched a movie and played on the internet while the poisons ran into my vein.
With chemo come side effects. There is a wide variety from which to choose. You apparently don't actually get to choose. My biggest side effect is deep, excruciating bone and joint pain. Pain unrelieved by narcotics or Tylenol and ibuprofen isn't permitted because of its blood thinning properties.Other side effects the first time included distorted taste (actually, nothing tasted good at all), pins-and-needle type of itching.
I feel fine the day after chemo so I work that day. The weekend and following Monday are bad.
So I had the PET scan and my lung nodules "lit up" indicating the possibility of more cancer. Dr. Partridge decided I should have a CT guided lung biopsy. I was picturing the radiologist climbing in the scanner with me, but that wasn't how it worked. I had the biopsy May 17th. The next week, I met with Dr. Partridge to get the results. The girls went with me. I was so nervous that I took an Ativan before leaving work for the appointment. The Dr. came in and asked how I was feeling. I said "nervous", she said "don't be". The nodules are granuloma - not cancer. We all cheered and Elizabeth high-fived with Dr. Partridge. We went to dinner to celebrate. So, now we were back where we were when Dr. Bowling said she removed all of the cancer.
Chemo #2 happened May 30th. My wonderful mother-in-law took me to the appointment. I am not permitted to drive because one of the chemo drugs is mixed in alcohol. The medical assistant who checked me in drew my blood. I always have bloodwork done, but since she drew from my arm, that arm was no longer available for an IV. It took 3 tries (again) to start the IV. Same routine - premeds followed by poison. Good next day, bad weekend and Monday. I helped Jennifer a little that weekend as she was preparing to move.
Monday, June 10th I returned to the dance floor. YAY!! I helped Patrick with his beginning ballroom class. I also helped Thursday the 13th. I can't tell you how good it feels to dance again!
Jennifer moved June 14th and I was there to help after work and on Saturday. This may not sound exciting to most but I enjoy the process of moving. Her home for the next two years is a cute little house in Anderson.
I forgot to tell you...I lost my hair. Well, most of it anyway. It started falling out the second week after the first treatment. My sister clipped it down to about 1/4" (It was traumatic enough. I couldn't have her take it all the way to the scalp) My wig looks awesome though. Most people don't know it's a wig unless I tell them - which I do. One of my co-workers thinks - and I agree - that my wig appears to be growing. Yes, it's that natural looking.. The wig gets uncomfortable after a while so I remove it when I get home and wear my mother's old scarf (which I love) one of the sleep caps I bought or one of the two, really cute hats that Jennifer made for me. (if I can figure out how, I'll post pictures of the hats)
Chemo #3 was last Thursday, June 20th. Same ole same ole. Again, my mother-in-law took me and picked me up. I had a different nurse and she got the IV in on the first try. YAY! I was permitted to take ibuprofen because my platelets are fine so the pain was just a constant, dull, horrible ache. Much better than the excruciating pain.
Today the palms of my hands itch and it is very annoying!!!! Nothing seems to help. Oh well....I am halfway finished with chemo and feeling ok. I'm eating better - especially when my sister brings me yummy food.
Now you're up to date. I wouldn't wish this on anyone but I have great doctors, great family and friends and lots of support. The only thing missing is someone to hold me at night when I get frightened or uncomfortable but I can deal with that.
I try to have a positive attitude, but to tell you the truth I'm MAD AS HELL!! It's totally unfair. I mean, how much more are we supposed to go through?! I have never smoked and only drink the occasional fru fru drink. I was becoming more active with dancing and racquetball. Now, I know that none of those things have anything to do with ovarian cancer, but seriously. WHY ME?!!
Well...I don't think there's actually an answer to that question. Writing this blog is helping and I have a great therapist. I will get through this.
During this time, I was steadily improving from the surgery - and getting BORED!! But patience is a virtue and I so wanted to be virtuous. I did buy a great wig because the doctor said I could expect to lose my hair. A girl scout is always prepared...
May 7th arrived and I went for my CT scan. Here's the thing. Patients can now access their medical records online. The test results for the CT were posted before I met with Dr. Partridge and, since I expected the results to be the same as they were in the hospital, I looked at them. BAD MOVE! Remember when I said I'm a big wuss when it comes to bad news? The results said the nodules were too numerous to count and consistent with metastasis. I became hysterical and called Jennifer and Elizabeth. They both dropped what they were doing and came over. (they are the greatest kids anyone could ever ask for) They told me that I could whip that into remission and I decided to pretend to believe it.
When I saw Dr. Partridge on the 9th, she was very unhappy that I had seen the results before she had a chance to discuss them with me. She was still skeptical that the cancer had metastasized to my lungs, or that it was a new primary site, so she ordered the PET to be done the week after my treatment. Needless to say, I was anxious and Ativan became my new best friend.
CHEMO: Chemo day is boring. The girls went with me for my first treatment. We first met with Dr. Partridge and she reviewed my CT results with me and discussed what was going to happen that day. I chose a recliner in the treatment room and settled in for the day. The nurse started an IV (third try) and the pre-meds were hung. Jennifer needed to go teach a class but Elizabeth stayed until the room started to fill up with patients. There aren't any "visitor" chairs. When Elizabeth was ready to leave, she went to my house to get my computer, bought me a chocolate milkshake at Steak and Shake and then left to do her own thing. I read, watched a movie and played on the internet while the poisons ran into my vein.
With chemo come side effects. There is a wide variety from which to choose. You apparently don't actually get to choose. My biggest side effect is deep, excruciating bone and joint pain. Pain unrelieved by narcotics or Tylenol and ibuprofen isn't permitted because of its blood thinning properties.Other side effects the first time included distorted taste (actually, nothing tasted good at all), pins-and-needle type of itching.
I feel fine the day after chemo so I work that day. The weekend and following Monday are bad.
So I had the PET scan and my lung nodules "lit up" indicating the possibility of more cancer. Dr. Partridge decided I should have a CT guided lung biopsy. I was picturing the radiologist climbing in the scanner with me, but that wasn't how it worked. I had the biopsy May 17th. The next week, I met with Dr. Partridge to get the results. The girls went with me. I was so nervous that I took an Ativan before leaving work for the appointment. The Dr. came in and asked how I was feeling. I said "nervous", she said "don't be". The nodules are granuloma - not cancer. We all cheered and Elizabeth high-fived with Dr. Partridge. We went to dinner to celebrate. So, now we were back where we were when Dr. Bowling said she removed all of the cancer.
Chemo #2 happened May 30th. My wonderful mother-in-law took me to the appointment. I am not permitted to drive because one of the chemo drugs is mixed in alcohol. The medical assistant who checked me in drew my blood. I always have bloodwork done, but since she drew from my arm, that arm was no longer available for an IV. It took 3 tries (again) to start the IV. Same routine - premeds followed by poison. Good next day, bad weekend and Monday. I helped Jennifer a little that weekend as she was preparing to move.
Monday, June 10th I returned to the dance floor. YAY!! I helped Patrick with his beginning ballroom class. I also helped Thursday the 13th. I can't tell you how good it feels to dance again!
Jennifer moved June 14th and I was there to help after work and on Saturday. This may not sound exciting to most but I enjoy the process of moving. Her home for the next two years is a cute little house in Anderson.
I forgot to tell you...I lost my hair. Well, most of it anyway. It started falling out the second week after the first treatment. My sister clipped it down to about 1/4" (It was traumatic enough. I couldn't have her take it all the way to the scalp) My wig looks awesome though. Most people don't know it's a wig unless I tell them - which I do. One of my co-workers thinks - and I agree - that my wig appears to be growing. Yes, it's that natural looking.. The wig gets uncomfortable after a while so I remove it when I get home and wear my mother's old scarf (which I love) one of the sleep caps I bought or one of the two, really cute hats that Jennifer made for me. (if I can figure out how, I'll post pictures of the hats)
Chemo #3 was last Thursday, June 20th. Same ole same ole. Again, my mother-in-law took me and picked me up. I had a different nurse and she got the IV in on the first try. YAY! I was permitted to take ibuprofen because my platelets are fine so the pain was just a constant, dull, horrible ache. Much better than the excruciating pain.
Today the palms of my hands itch and it is very annoying!!!! Nothing seems to help. Oh well....I am halfway finished with chemo and feeling ok. I'm eating better - especially when my sister brings me yummy food.
Now you're up to date. I wouldn't wish this on anyone but I have great doctors, great family and friends and lots of support. The only thing missing is someone to hold me at night when I get frightened or uncomfortable but I can deal with that.
I try to have a positive attitude, but to tell you the truth I'm MAD AS HELL!! It's totally unfair. I mean, how much more are we supposed to go through?! I have never smoked and only drink the occasional fru fru drink. I was becoming more active with dancing and racquetball. Now, I know that none of those things have anything to do with ovarian cancer, but seriously. WHY ME?!!
Well...I don't think there's actually an answer to that question. Writing this blog is helping and I have a great therapist. I will get through this.
Tuesday, June 25, 2013
The journey begins
Back in April, several people suggested that I start a blog to chronicle my journey through hell. I resisted because, quite frankly I don't write all that well plus I didn't think anyone would be interested. Turns out that it may be good for my mental health, so here I go.
April 4, 2013 I was experiencing severe LLQ pain and took myself to the ER. Actually, I got partway to the ER and needed to call Elizabeth to come get me and drive me the rest of the way. I stopped at her place of employment but she was already at the ER so had to come back for me. (I had told the girls not to even come. I was expecting something simple like an ovarian cyst).
The ER doctor was a lovely woman. I really felt sorry for her. She sent me for a scan and was expecting something like diverticulitis. Instead, she had to tell me that I had a mass on my ovary. I've been told that I became a little hysterical and kept saying that my girls could not lose another parent. Apparently I'm a wuss when it comes to bad news.
I don't remember too much of the next couple of days. I know that I was admitted because I was in so much pain. I vaguely remember seeing the surgeon the next day for an exam. I remember telling the doctor she could talk to whomever was there after surgery. Of course, I thought this would include my girls, my siblings and my friend, Mary Ellen. I've been told that it included a number of people - some of whom I haven't met. Oh well...
Back to Thursday night...Jennifer spent the night in my room. I apparently moved to another room Friday. I don't remember the move but remember being somewhere new. I have been told that I was calling everyone in my contact list. I don't remember this and wish the girls had been successful in taking my phone. One call was right though. I called my friend, Mary Ellen. I told her not to come down but she didn't listen. THANK YOU FOR NOT LISTENING. She came on Friday and stayed with Jennifer in my room Friday night. Saturday was surgery day. I don't remember this day. I do remember that Mary Ellen sent Jennifer home and stayed with me again. And I remember that the surgeon said I was lucky. Usually ovarian cancer has metastasized by the time symptoms occur. Since I had pain from a twisted, necrotic ovary, the mass was only on the ovary (ovaries?) and part of the tube. So...the word was that they were able to remove all of the cancer. Surrounding tissue and fluids were all negative. (YAY)
My recovery from surgery was slow. I was sick, sick, sick. I remained in the hospital until 4/13. I was only discharged then because I lied and said I had eaten a full breakfast. (1/4 of a bagel counts, doesn't it?) I missed Elizabeth and Bethany's moving day. This made me sad because I love moving. Jennifer took "mom duty" and handled my discharge from the hospital.
I spent the next few days at the ResorT. What a wonderful place to recuperate. John and Carol pampered me, fed me and basically took great care of me!!
The Tuesday after my discharge, I had an appointment with the surgeon. Let me pause here for just a minute to say that my surgeon, Marcia Bowling, is incredible!! She has that ability to be straight forward and empathetic at the same time.
So, back to the appointment. I thought Elizabeth was going to ask to remove a couple of staples herself. She's always been very interested in things like that. The staples were removed and glue applied to the incision. I was told that I was doing fine and sent on my merry way.
Funny story...a few hours after getting home, I needed to use the bathroom. I couldn't get my panties down (a little TMI? but it's a funny story) They had stuck to the glue on my incision. Jennifer carefully (and laughing the entire time) cut the fabric. I spent the next 10 days with fabric stuck to my lower abdomen.
Recovery from surgery was slow but steady.
That's enough for now. I'll be back later to start the journey into chemotherapy.
April 4, 2013 I was experiencing severe LLQ pain and took myself to the ER. Actually, I got partway to the ER and needed to call Elizabeth to come get me and drive me the rest of the way. I stopped at her place of employment but she was already at the ER so had to come back for me. (I had told the girls not to even come. I was expecting something simple like an ovarian cyst).
The ER doctor was a lovely woman. I really felt sorry for her. She sent me for a scan and was expecting something like diverticulitis. Instead, she had to tell me that I had a mass on my ovary. I've been told that I became a little hysterical and kept saying that my girls could not lose another parent. Apparently I'm a wuss when it comes to bad news.
I don't remember too much of the next couple of days. I know that I was admitted because I was in so much pain. I vaguely remember seeing the surgeon the next day for an exam. I remember telling the doctor she could talk to whomever was there after surgery. Of course, I thought this would include my girls, my siblings and my friend, Mary Ellen. I've been told that it included a number of people - some of whom I haven't met. Oh well...
Back to Thursday night...Jennifer spent the night in my room. I apparently moved to another room Friday. I don't remember the move but remember being somewhere new. I have been told that I was calling everyone in my contact list. I don't remember this and wish the girls had been successful in taking my phone. One call was right though. I called my friend, Mary Ellen. I told her not to come down but she didn't listen. THANK YOU FOR NOT LISTENING. She came on Friday and stayed with Jennifer in my room Friday night. Saturday was surgery day. I don't remember this day. I do remember that Mary Ellen sent Jennifer home and stayed with me again. And I remember that the surgeon said I was lucky. Usually ovarian cancer has metastasized by the time symptoms occur. Since I had pain from a twisted, necrotic ovary, the mass was only on the ovary (ovaries?) and part of the tube. So...the word was that they were able to remove all of the cancer. Surrounding tissue and fluids were all negative. (YAY)
My recovery from surgery was slow. I was sick, sick, sick. I remained in the hospital until 4/13. I was only discharged then because I lied and said I had eaten a full breakfast. (1/4 of a bagel counts, doesn't it?) I missed Elizabeth and Bethany's moving day. This made me sad because I love moving. Jennifer took "mom duty" and handled my discharge from the hospital.
I spent the next few days at the ResorT. What a wonderful place to recuperate. John and Carol pampered me, fed me and basically took great care of me!!
The Tuesday after my discharge, I had an appointment with the surgeon. Let me pause here for just a minute to say that my surgeon, Marcia Bowling, is incredible!! She has that ability to be straight forward and empathetic at the same time.
So, back to the appointment. I thought Elizabeth was going to ask to remove a couple of staples herself. She's always been very interested in things like that. The staples were removed and glue applied to the incision. I was told that I was doing fine and sent on my merry way.
Funny story...a few hours after getting home, I needed to use the bathroom. I couldn't get my panties down (a little TMI? but it's a funny story) They had stuck to the glue on my incision. Jennifer carefully (and laughing the entire time) cut the fabric. I spent the next 10 days with fabric stuck to my lower abdomen.
Recovery from surgery was slow but steady.
That's enough for now. I'll be back later to start the journey into chemotherapy.
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