Monday night I experienced some shortness of breath when I went to bed. This was a new symptom for me so I called my oncologist on Tuesday. He examined me and everything seemed fine, but wanted a CT angiogram of my chest to make sure the shortness of breath wasn't being caused by a pulmonary embolism (I've lost count, this was either my 3rd of 4th of these for that reason). There was no pulmonary embolism, but the CT scan showed a new, small pleural effusion (fluid around the lung) on the right. It also showed continued growth of multiple nodules in both lungs as well as the liver and adrenal metastases.
The shortness of breath when lying down hasn't been bothering me since Wednesday - I don't know why - so I'm back to my baseline symptoms with shortness of breath after minor exertion, well-controlled pain and only occasional, controllable nausea. My activities haven't changed, just my knowledge of the scoreboard. Right now my cancer and I hold each other at bay and I'm very thankful for that.
Next week I go back for Zometa and Gemzar (who knows? maybe it's slowing things down and it doesn't bother me much so we'll keep it up). The leaves are starting to change but there has been no real nip in the air yet. Everyone is busy and enjoying life.
Lisa
Thursday, September 24, 2009
Sunday, September 20, 2009
Friday, September 18, 2009
What's Up With the Doc 75? - Life Keeps Rolling
It's been a very busy week, hence Friday morning before I can get out my update. I had chemo on Tuesday and that went without any problems. My oncologist is out for a family emergency so I saw one of the other doctors in the practice and we talked a little about what may be coming. As I mentioned in my last note or the one before, my liver function tests are rising. This could either be because the tumors in the liver are growing or because of the chemo itself. I'm pretty sure, for my part, that it is tumor growth because they started up a little before I even started this chemo and, if you remember, they were going up pretty quickly before I started my very first chem over 18 months ago. If they keep going up, regardless of the cause, they will force stopping the chemo when they reach about 5 times the normal upper limits. Not to be a downer, but this is the last approved chemo for my cancer, so that would be the end of active treatment phase. I continue to get Zometa to slow down the progression of the metastases in the bones and prevent fractures. My bone pain has gradually been increasing over the last couple of weeks, so this week we increased the oxycontin to 30 mg twice a day and I am taking 3 - 4 doses of rescue oxycodone to keep the pain controlled. The really good news in that is that the pain is still very controllable and those are still moderate doses, so I presume I'll keep going to the oncologist for Zometa until something happens to make it moot - fracture through that hip lesion, for instance, that would probably put me in a wheelchair - or until I opt for Hospice only care.
Except for the day after chemo, when I felt truly awful for a few short hours with pain and exhaustion, my energy level is good, nausea is minimal, appetite is good and I haven't lost any more weight. There's lots of interesting stuff going on at the hospital regarding Employee Health, H1N1 flu, practice realignments, etc. so plenty of administrative work to do and I have felt well enough to throw myself into it with abandon. Only the CT DOT is trying to interfere, doing major bridge work over the CT River so it took me an hour and 45 minutes to get to work yesterday. Guess I'll be traveling the back roads for the next couple of weeks.
Other than that, volleyball season has begun! Hannah's team played Tuesday and last night and won both matches 3-0. She made the paper this morning for her 3 blocks, 2 service points and 6 kills! Next week will see at least one more challenging match plus their biggest rivalry with the next town over (although that team is starting out 0-2) so the excitement continues to build around her senior season. Philip is doing better in school than ever before in his short but tall life - go Philip!
The leaves have just started to show a little bit of color, temperatures are cooling and it really does seem like there is a touch of fall in the air. The air conditioner almost never comes on but it's always comfortable so I'm enjoying the season transition very much. The recliner is still the place to be in my house and we are enjoying all the great sports on TV.
The only directed thoughts I can ask for right now would be aimed at my liver function tests, so tell those hepatocytes to take a deep breath and chill out. Next chemo September 29.
Lisa
Except for the day after chemo, when I felt truly awful for a few short hours with pain and exhaustion, my energy level is good, nausea is minimal, appetite is good and I haven't lost any more weight. There's lots of interesting stuff going on at the hospital regarding Employee Health, H1N1 flu, practice realignments, etc. so plenty of administrative work to do and I have felt well enough to throw myself into it with abandon. Only the CT DOT is trying to interfere, doing major bridge work over the CT River so it took me an hour and 45 minutes to get to work yesterday. Guess I'll be traveling the back roads for the next couple of weeks.
Other than that, volleyball season has begun! Hannah's team played Tuesday and last night and won both matches 3-0. She made the paper this morning for her 3 blocks, 2 service points and 6 kills! Next week will see at least one more challenging match plus their biggest rivalry with the next town over (although that team is starting out 0-2) so the excitement continues to build around her senior season. Philip is doing better in school than ever before in his short but tall life - go Philip!
The leaves have just started to show a little bit of color, temperatures are cooling and it really does seem like there is a touch of fall in the air. The air conditioner almost never comes on but it's always comfortable so I'm enjoying the season transition very much. The recliner is still the place to be in my house and we are enjoying all the great sports on TV.
The only directed thoughts I can ask for right now would be aimed at my liver function tests, so tell those hepatocytes to take a deep breath and chill out. Next chemo September 29.
Lisa
Thursday, September 10, 2009
What's Up With the Doc 74? - 18 Months!
Just a quickie this week to say that all is well. I tried coming off the steroids and wound up feeling like a flaccid penis that was also nauseated so I'm back on the crack. I doubled my Protonix and the heartburn isn't bothering me. First volleyball scrimmage was yesterday and I made it through 2 1/2 hours thanks to the new stadium seats Robert snagged.
Having great fun helping (minimal help needed) Hannah with AP Physics.
Philip broke his finger in gym class on Tuesday so is out of gym class for a couple of weeks and SO VERY SAD ABOUT THAT. Not.
Emma's vet school applications go in this week.
Lindsay is coming out for the day tomorrow and says she has SO MUCH GRAD SCHOOL STUFF TO TALK ABOUT that it will probably drive me crazy.
Next chemo on Tuesday.
My one serious note comes after an email from my colleague who was diagnosed with stage IV cholangiocarcinoma in December. She is feeling demoralized because treatment is not producing improvement in her cancer and she knows of so many people who have been diagnosed around the same time or since and are finishing or finished treatment and being flipped over into the survivor column. That's the whole problem I've had with the survivor label. I've been alive (surviving) 18 months since diagnosis as of tomorrow. But I am not a survivor. I am still in active treatment and will remain in active treatment until I am transferred to hospice because there are no more approved, effective treatments for my cancer. I have been so blessed with these 18 months and the love and life they have contained. I just wish there had been that survivor column to even aim for.
Thank you all for all you have contributed to these 18 months.
Having great fun helping (minimal help needed) Hannah with AP Physics.
Philip broke his finger in gym class on Tuesday so is out of gym class for a couple of weeks and SO VERY SAD ABOUT THAT. Not.
Emma's vet school applications go in this week.
Lindsay is coming out for the day tomorrow and says she has SO MUCH GRAD SCHOOL STUFF TO TALK ABOUT that it will probably drive me crazy.
Next chemo on Tuesday.
My one serious note comes after an email from my colleague who was diagnosed with stage IV cholangiocarcinoma in December. She is feeling demoralized because treatment is not producing improvement in her cancer and she knows of so many people who have been diagnosed around the same time or since and are finishing or finished treatment and being flipped over into the survivor column. That's the whole problem I've had with the survivor label. I've been alive (surviving) 18 months since diagnosis as of tomorrow. But I am not a survivor. I am still in active treatment and will remain in active treatment until I am transferred to hospice because there are no more approved, effective treatments for my cancer. I have been so blessed with these 18 months and the love and life they have contained. I just wish there had been that survivor column to even aim for.
Thank you all for all you have contributed to these 18 months.
Thursday, September 3, 2009
What's Up With the Doc 73? - A Much Better Week
Wow! I am very thankful to report that the last two weeks seem to have been an anomaly of feeling miserable and I am much, much, much better this week. I haven't had to take anything at all for nausea for the last 3 or 4 days, my pain is adequately controlled, I've made it to work every day and I got chemo and Zometa on Tuesday. Yay! I don't know whether I was dealing with a viral gastrointestinal illness or what, but I tolerated the Gemzar on Tuesday with only moderate fatigue the next day and some increased pain for about 24 hours. I'm still worried about those stupid liver function tests, but as long as I feel good won't ask to repeat them until early October. Maybe they'll give us an idea about whether or not the tumor is responding to the Gemzar.
I'm having some moderately severe heartburn today, even on Protonix, so I'll probably increase the Protonix and start to decrease the steroids. I can always go back up on the steroids if my misery index increases, but right now the heartburn is the most miserable thing I'm experiencing. I'm cut loose from the oncologist until September 15th, when I get my next Gemzar.
I continue to THOROUGHLY enjoy my recliner. It's amazing to me how much more comfortable I can be in that chair than just about anywhere else, including my bed. I've been working away on the last of Lindsay's quilt top elements (7 of 18 left to do) and enjoying baseball, football and even occasional golf.
All the kids are back in school. Hannah finds out about final volleyball teams today, first scrimmage is the 9th and first match of the season is the 15th. Philip is at the Percussion Ensemble meeting today and should be entertaining himself making lots of noise this semester at school. Emma is deeply into the semester and almost done with this round of vet school applications. Lindsay has been to her first World Politics class but is currently in Traverse City with Jacob for her sister-in-law's wedding, so school is on the back burner for the next week or so.
Robert has continued to keep himself busy painting the house and the weather in Connecticut has been as close to perfect as it gets for the last week or so. It's nice when feeling good and beautiful surroundings coincide so nicely!
Thanks for all the antinausea thoughts. They worked!
Lisa
I'm having some moderately severe heartburn today, even on Protonix, so I'll probably increase the Protonix and start to decrease the steroids. I can always go back up on the steroids if my misery index increases, but right now the heartburn is the most miserable thing I'm experiencing. I'm cut loose from the oncologist until September 15th, when I get my next Gemzar.
I continue to THOROUGHLY enjoy my recliner. It's amazing to me how much more comfortable I can be in that chair than just about anywhere else, including my bed. I've been working away on the last of Lindsay's quilt top elements (7 of 18 left to do) and enjoying baseball, football and even occasional golf.
All the kids are back in school. Hannah finds out about final volleyball teams today, first scrimmage is the 9th and first match of the season is the 15th. Philip is at the Percussion Ensemble meeting today and should be entertaining himself making lots of noise this semester at school. Emma is deeply into the semester and almost done with this round of vet school applications. Lindsay has been to her first World Politics class but is currently in Traverse City with Jacob for her sister-in-law's wedding, so school is on the back burner for the next week or so.
Robert has continued to keep himself busy painting the house and the weather in Connecticut has been as close to perfect as it gets for the last week or so. It's nice when feeling good and beautiful surroundings coincide so nicely!
Thanks for all the antinausea thoughts. They worked!
Lisa
Saturday, August 29, 2009
What's Up With the Doc 72? - More Than I'd Like
It's been a rocky week. Monday I got hit with that overwhelming discomfort thing from which I am always unable to get any relief. I told Robert that I wanted him to find me a recliner but then let my mother and sister in on it and between the three of them I had a brand new La-Z-Boy in my family room by Tuesday afternoon. It seems to be the place that I am most likely to find a position of comfort and is a wonderful gift in my new state of being. Tuesday and Wednesday were better than Monday, but Thursday I woke up vomiting. I made it to an 8 o'clock meeting but apparently looked so poorly that my boss walked me down to the emergency department, where I spent most of the rest of the day.
They didn't find anything big and scary to explain the vomiting - no brain mets on a dry CT, no abdominal obstruction - but my liver function tests are about twice normal and my platelets are low (that latter is from the chemotherapy a week and a half ago). I got fluids and IV antinausea medicine and eventually got myself home and into the recliner. No vomiting yesterday, but the nausea persists. They started me on steroids and I'm hoping to see some relief from that over the next couple of days. The other not too good thing, along with the elevated liver function tests, is that I've lost 8 pounds in the last 2 weeks. So it feels like the balance is beginning to tip in cancer's favor.
I'll see how things go this week before I make any decisions about work. I'd like to keep working through the middle of October, but I don't know if that's going to be workable. I can do a fair amount from home and I know they are amenable to that, so we'll see.
My spirits are flagging a bit as I start to run into walls that I don't seem to be able to get over. I started an antidepressant Wednesday night but that's on hold with the vomiting on Thursday. The steroids should perk me up at least a bit.
Everybody except Lindsay is back in school and she starts Monday, so the new season rolls along. Hannah is at her first volleyball practice/try out for the school team and I look forward to the games upcoming.
Think good antinausea thoughts for me and I'll try to keep the updates coming.
Lots of love,
Lisa
They didn't find anything big and scary to explain the vomiting - no brain mets on a dry CT, no abdominal obstruction - but my liver function tests are about twice normal and my platelets are low (that latter is from the chemotherapy a week and a half ago). I got fluids and IV antinausea medicine and eventually got myself home and into the recliner. No vomiting yesterday, but the nausea persists. They started me on steroids and I'm hoping to see some relief from that over the next couple of days. The other not too good thing, along with the elevated liver function tests, is that I've lost 8 pounds in the last 2 weeks. So it feels like the balance is beginning to tip in cancer's favor.
I'll see how things go this week before I make any decisions about work. I'd like to keep working through the middle of October, but I don't know if that's going to be workable. I can do a fair amount from home and I know they are amenable to that, so we'll see.
My spirits are flagging a bit as I start to run into walls that I don't seem to be able to get over. I started an antidepressant Wednesday night but that's on hold with the vomiting on Thursday. The steroids should perk me up at least a bit.
Everybody except Lindsay is back in school and she starts Monday, so the new season rolls along. Hannah is at her first volleyball practice/try out for the school team and I look forward to the games upcoming.
Think good antinausea thoughts for me and I'll try to keep the updates coming.
Lots of love,
Lisa
Friday, August 21, 2009
What's Up With the Doc 71? - A Rough Few Days
I feel like a bear stumbling around after winter hibernation even though it's only been three days. As I've been reporting, I always seem to have some level of nausea. It was a little worse when I went in for my first Gemzar on Tuesday but I was otherwise fine and knew they'd be giving me something for nausea IV before the chemo so we went ahead. Half way through the chemo I threw up what appeared to be everything that had gone into my stomach that day. They held the chemo, gave me some fluids and more antinausea meds then finished the chemo. That was far from the end of the story, however. I threw up twice more - once as soon as I got home and one with my 10 pm medications and then had diarrhea for most of the evening/night. My temperature never got above 100. Wednesday I basically didn't make it out of bed except to go to the bathroom. Things finally started to improve yesterday afternoon after I took some Compazine (old school antinausea medicine) and actually managed some dinner last night.
Even though this started during chemo, I don't think it had anything to do with chemo. I actually think I had a viral gastroenteritis so plan to go about my business and give the Gemzar another go in two weeks. My oncologist and I are talking about pain and nausea control (the opiates may certainly be contributing to the constant low grade nausea so we may try messing with those a bit, although my pain is very well controlled right now and I'm a bit nervous about changing any of that up.
Other than that, everything is status quo. My vital signs and blood counts were fine on Tuesday. I managed to get in to work for a few hours yesterday and aim for the same today. We have a quiet weekend planned before the insanity of a new school year hits next week, and I do mean hit. Emma starts classes for her masters program Monday, Lindsay registers for her class(es) Thursday, the same day that Hannah and Philip start their senior and junior years of high school, respectively. We'll be sitting in volleyball bleachers in no time! Even though summer waited a long time to get here, I'm already tired of the hot sticky weather. I'm not looking for first frost or anything, but dew points in the 60s would be an improvement.
So, anyway, I seem to be recovering from this latest little kick in the pants. No more chemo until September!
Even though this started during chemo, I don't think it had anything to do with chemo. I actually think I had a viral gastroenteritis so plan to go about my business and give the Gemzar another go in two weeks. My oncologist and I are talking about pain and nausea control (the opiates may certainly be contributing to the constant low grade nausea so we may try messing with those a bit, although my pain is very well controlled right now and I'm a bit nervous about changing any of that up.
Other than that, everything is status quo. My vital signs and blood counts were fine on Tuesday. I managed to get in to work for a few hours yesterday and aim for the same today. We have a quiet weekend planned before the insanity of a new school year hits next week, and I do mean hit. Emma starts classes for her masters program Monday, Lindsay registers for her class(es) Thursday, the same day that Hannah and Philip start their senior and junior years of high school, respectively. We'll be sitting in volleyball bleachers in no time! Even though summer waited a long time to get here, I'm already tired of the hot sticky weather. I'm not looking for first frost or anything, but dew points in the 60s would be an improvement.
So, anyway, I seem to be recovering from this latest little kick in the pants. No more chemo until September!
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