My mom called today. "Not one phone call last night," she said.
"Well, I'm not suprised since I read the riot act to everyone on the blog."
"But I wouldn't have minded a phone call necessarily. I took such a long nap that I couldn't sleep till 11:30pm."
I just can't win. But understandably, she doesn't want me to come accross as the phone police. So maybe the two nights after chemo, we keep it to a min. Otherwise, she'll turn off the ringer if she's napping.
A busy day today. A few hours at the office, a doctor's appointment with her urologist, and a small gathering at the cancer center this evening. They're held by the American Cancer Society monthly, and focus of ways to make patients feel beter inside, by improving the outside. They discuss things like wigs, make-up, skin care (which can be particularly challenging during radiation), and what it means to be a woman living with cancer. Could be totally hokey, who knows, but perhaps it will help Mom to be around others like herself.
Thursday, January 31, 2008
Wednesday, January 30, 2008
If I May Make a Request
Mom is doing well for the most part, but she is beginning to see trends in symptoms, specifically in the evening. She gets tired, has a bit of a stomach ache, which takes away her appetite, and can have a head ache here and there. She's been combating this by getting down all her fluids and eating plenty and well earlier in the day, so if she can only tolerate a small dinner, she doesn't have to worry about not getting enough cancer fighting calories.
Her mornings are a different story all together. She gets up, takes her handful of medications, checks her blood pressure, confirms/makes/cancels appointments, and then spends a few hours in the office.
Which brings me to my point, that although she is overall, feeling well, if loving friends could refrain from calling the house in the late afternoon and evenings, it would be much appreciated. After I woke her up, she received no less than 10 phone calls. Even if she doesn't answer, the ringing could possibly wake her up. Might sound trivial, but a good afternoon rest could be the difference between her being able to enjoy dinner and maybe a few chapters of her book, which is really important.
She's on her email several times a day, so she would prefer to be contacted that way. And if you do call, try to make it in the mornings.
I feel so ridiculous telling people to reign in the good wishes, because I know our intentions are good ones, but I'm sure we can all relate.
Her mornings are a different story all together. She gets up, takes her handful of medications, checks her blood pressure, confirms/makes/cancels appointments, and then spends a few hours in the office.
Which brings me to my point, that although she is overall, feeling well, if loving friends could refrain from calling the house in the late afternoon and evenings, it would be much appreciated. After I woke her up, she received no less than 10 phone calls. Even if she doesn't answer, the ringing could possibly wake her up. Might sound trivial, but a good afternoon rest could be the difference between her being able to enjoy dinner and maybe a few chapters of her book, which is really important.
She's on her email several times a day, so she would prefer to be contacted that way. And if you do call, try to make it in the mornings.
I feel so ridiculous telling people to reign in the good wishes, because I know our intentions are good ones, but I'm sure we can all relate.
In The Flesh
I've been meaning to post some pictures I've taken along the way. Here's Mom receiving her very first Helping Hands meal. It's better than Christmas.
There's something crazy about a nurse having to wear gown and gloves when just holding this bad, but the patient gets it straight up, in the bloodstream.
Tuesday, January 29, 2008
A Few Hours Here, A Few Hours There
Mom ventured in to the office for about four hours today, her first time there conducting official business since the last day in November, if you can believe it! Her team has done a wonderful job working together while protecting Mom from any little snags in the past few months, which allowed her to really rest and relax. She'd been anxious to try a few hours a day, and after Judy (our oncology RN) told us she worked full time as an oncology nurse while undergoing chemo herself, it inspired Mom to give it a shot herself.
But really, can you imagine? Giving chemo all day, then on Friday afternoon, sitting down in that chair yourself, then heading back to work Monday? At least it put my mind at ease a bit, realizing that if Mom can lead as normal a life as possible, it could actually really work in her favor.
Her symptoms were kept well at bay thanks to the proactive approach and bucket of meds she's been instructed to take the days following treatment. She was taking a rest this evening when I so rudely called and woke her up from a nap (AHHHHHHHHH! So angry with myself...), and I felt good knowing that when she's hungry, she can just wander over to the fridge and heat up a delicious dinner prepared by some of you.
Not too shabby for day 2!
But really, can you imagine? Giving chemo all day, then on Friday afternoon, sitting down in that chair yourself, then heading back to work Monday? At least it put my mind at ease a bit, realizing that if Mom can lead as normal a life as possible, it could actually really work in her favor.
Her symptoms were kept well at bay thanks to the proactive approach and bucket of meds she's been instructed to take the days following treatment. She was taking a rest this evening when I so rudely called and woke her up from a nap (AHHHHHHHHH! So angry with myself...), and I felt good knowing that when she's hungry, she can just wander over to the fridge and heat up a delicious dinner prepared by some of you.
Not too shabby for day 2!
Monday, January 28, 2008
Touched to Tears
It's one thing to know that a group of friends has offered to run an errand, or cook a meal here and there, but it is another thing all together, when they get together to pow wow in your best interest.
Our Master of Helping Hands Ceremonies, Susan, just called to check in and make sure we got a meal delivery today, and remind us that if Mom's diet or cravings change, just let her know and she can adjust the menu accordingly. She also mentioned that a few of our super stars got together on a Sunday morning to have coffee and meet face to face! How this warmed my heart is indescribable. To think that a group of women, many of them who have been touched by cancer in their own lives, got together to take on yet another cancer-kicking challenge and have jumped in wholeheartedly, well it just makes me want to sob my eyes out in front of an Anne of Green Gables marathon. Friendship is such a beautiful thing, and through Mom's cancer, her friends are befriending one another, and over venti non fat mochas at Starbucks, no less.
I joke, but I hope you all know how much we love and appreciate everything you do. I'm overwhelmed with how we will ever thank you.
Mom is enjoying a mug of Marilyn D's miracle broth, snuggled under Nan's shawl, reading a book recommended by Jen's mom (Kitchen Table Wisdom, a copy of which was also sent to me by Mokus), and Carol & Jerry K's dinner is warming in the oven. Even now, alone in the living room, she is surrounded by gestures of love.
Ugh, I can be such a sap sometimes. I've got to go smash a beer can on my forehead or something.
Our Master of Helping Hands Ceremonies, Susan, just called to check in and make sure we got a meal delivery today, and remind us that if Mom's diet or cravings change, just let her know and she can adjust the menu accordingly. She also mentioned that a few of our super stars got together on a Sunday morning to have coffee and meet face to face! How this warmed my heart is indescribable. To think that a group of women, many of them who have been touched by cancer in their own lives, got together to take on yet another cancer-kicking challenge and have jumped in wholeheartedly, well it just makes me want to sob my eyes out in front of an Anne of Green Gables marathon. Friendship is such a beautiful thing, and through Mom's cancer, her friends are befriending one another, and over venti non fat mochas at Starbucks, no less.
I joke, but I hope you all know how much we love and appreciate everything you do. I'm overwhelmed with how we will ever thank you.
Mom is enjoying a mug of Marilyn D's miracle broth, snuggled under Nan's shawl, reading a book recommended by Jen's mom (Kitchen Table Wisdom, a copy of which was also sent to me by Mokus), and Carol & Jerry K's dinner is warming in the oven. Even now, alone in the living room, she is surrounded by gestures of love.
Ugh, I can be such a sap sometimes. I've got to go smash a beer can on my forehead or something.
Saaaaay Chemo!
Of course, I forgot the proper pieces to upload pictures to the computer, so those will have to wait till I return to Boston tomorrow.
Day 1 came and went, and Mom conquered chemo and a bag of M&M's. This weekend was about rest, finishing some projects, and just wrapping her mind around what was ahead. Fortunately, there was nothing to it. We arrived at the cancer center to learn that her creatinine was 1.2 last Thursday (normal, and the best it's been), and her creatinine clearance was 61, which is pretty darn close to normal. In other words, her kidney function seems to continue to trend in the desired direction.
She was able to receive the cistplatin, but just for safety's sake, she only received half the dose, followed by the gemzar. Next week, she'll receive the other half with gemzar again. Overall, the process took about six hours, during which Mom read, took a snooze, dined on fruit salad, a bagel, and her favorite beef stew. Judy also spent a lot of time talking with Mom about what to expect, the medications she needs to take, how to combat undesirable side effects, and the schedule for the next few weeks. She also shared that 12 years ago, she too went through chemo, and has been well ever since. Mom loves her more with every encounter, and the best part is, her sensitivity to body products has seemed to disappear, allowing us to avoid uncomfortable confrontations :)
She is, as I type, out picking up some prescriptions and then Casey from the office. Her energy is getting back to where it should be. She's been given the green light to return to work for a few hours a day if she'd like, but realizes she absolutely MUST listen to her body's signals and head home when she gets tired.
Waiting for the unknown has been hands down, the hardest part of this entire process. There is certainly some lingering anxiety on every one's part about how her kidney function will look next Monday before the second treatment, but otherwise, we're off to a stellar start.
Thursday Mom will go see her urologist and I'm sure he'll do a thorough assessment of how the kidney is holding up, then after chemo next Monday, she and I have a date to go wig shopping. I'm thinking Sybil Faulty, but it's not up to me.
Day 1 came and went, and Mom conquered chemo and a bag of M&M's. This weekend was about rest, finishing some projects, and just wrapping her mind around what was ahead. Fortunately, there was nothing to it. We arrived at the cancer center to learn that her creatinine was 1.2 last Thursday (normal, and the best it's been), and her creatinine clearance was 61, which is pretty darn close to normal. In other words, her kidney function seems to continue to trend in the desired direction.
She was able to receive the cistplatin, but just for safety's sake, she only received half the dose, followed by the gemzar. Next week, she'll receive the other half with gemzar again. Overall, the process took about six hours, during which Mom read, took a snooze, dined on fruit salad, a bagel, and her favorite beef stew. Judy also spent a lot of time talking with Mom about what to expect, the medications she needs to take, how to combat undesirable side effects, and the schedule for the next few weeks. She also shared that 12 years ago, she too went through chemo, and has been well ever since. Mom loves her more with every encounter, and the best part is, her sensitivity to body products has seemed to disappear, allowing us to avoid uncomfortable confrontations :)
She is, as I type, out picking up some prescriptions and then Casey from the office. Her energy is getting back to where it should be. She's been given the green light to return to work for a few hours a day if she'd like, but realizes she absolutely MUST listen to her body's signals and head home when she gets tired.
Waiting for the unknown has been hands down, the hardest part of this entire process. There is certainly some lingering anxiety on every one's part about how her kidney function will look next Monday before the second treatment, but otherwise, we're off to a stellar start.
Thursday Mom will go see her urologist and I'm sure he'll do a thorough assessment of how the kidney is holding up, then after chemo next Monday, she and I have a date to go wig shopping. I'm thinking Sybil Faulty, but it's not up to me.
Thursday, January 24, 2008
A Sundae Sounds Delicious, Actually
Just when I feel like I'm not sure if I need a good cry or a Reese's Pieces sundae from Friendly's, I get emails like this from my dad.
C'est une idée absolument merveilleuse… semblable à à quel point il
merveilleux est que j'ai appris que j'ai une application de traitement de
texte qui peut traduire celui que j'écrive.
Mais je veux l'examiner pour voir s'il sait tous mots que je sais qui sont américains.
>
> Hot-dog
>
> Camion du feu
>
> Cocotte en terre de Jalapeno et de chou-fleur
>
> Le tigre épuisent
>
> Chiens de sommeil
>
> Le cheval épuisent
>
> Je t'aime tout un désordre de beaucoup mais moi déplorent toujours le « jeu
> de nuage. » Amour, papa.
>
> (.....now in AmericanTexan that all should go something like --
>
> This is an absolutely wonderful idea…similar to how wonderful it is that I
> learned that I have a word-processing application that can translate
> whatever I write.
>
> But I want to test it to see if it knows all the words I know that are
> American.
>
> Hot Dog
>
> Fire truck
>
> Jalapeno and Cauliflower casserole
>
> Tiger poop
>
> Sleeping dogs
>
> Horse poop
C'est une idée absolument merveilleuse… semblable à à quel point il
merveilleux est que j'ai appris que j'ai une application de traitement de
texte qui peut traduire celui que j'écrive.
Mais je veux l'examiner pour voir s'il sait tous mots que je sais qui sont américains.
>
> Hot-dog
>
> Camion du feu
>
> Cocotte en terre de Jalapeno et de chou-fleur
>
> Le tigre épuisent
>
> Chiens de sommeil
>
> Le cheval épuisent
>
> Je t'aime tout un désordre de beaucoup mais moi déplorent toujours le « jeu
> de nuage. » Amour, papa.
>
> (.....now in AmericanTexan that all should go something like --
>
> This is an absolutely wonderful idea…similar to how wonderful it is that I
> learned that I have a word-processing application that can translate
> whatever I write.
>
> But I want to test it to see if it knows all the words I know that are
> American.
>
> Hot Dog
>
> Fire truck
>
> Jalapeno and Cauliflower casserole
>
> Tiger poop
>
> Sleeping dogs
>
> Horse poop
You Know Mom's Feeling Good When
1. She calls me when I'm still an hour away to suggest I meet her at Toshi instead of coming straight home.
2. When she has a "paper project" to get home to, but ends up browsing at Marshall's with me instead.
3. Wants to stay up at watch the latest installment of "The Complete Jane Austen," and will probably try to hold my hand.
4. Acts like a kid on Christmas when she finds food in the cooler outside, and can't wait to heat it up.
5. Can't wait to heat it up so much so that she kills a few handfuls of Trader Joe's veggie chips while doing laundry, tackling the "paper project", returning phone calls, and planning a girls weekend to Kripalu in May.
Chemo- hit us with your best shot. We had our appointment with Dr. D this afternoon and Mom is scheduled to start chemo on Monday, providing all her blood work and kidney function tests look okay. If we don't hear otherwise from Dr. D tomorrow, we are to assume that Monday is a go.
We've weighed the pros and the cons, we know what she has to do to keep healthy throughout this process, and Mom's ready. We addressed a few concerns in our meeting, such as ways to boost her immune system, to which Dr. D said, "good sleep, healthy diet, stay away from sick people, and HAND WASHING!" All those products out there- gimmicks. She said Mom could spend a fortune on products that claim to boost the immune system, but there's no proof to any of them. So that was reassuring because Mom is already doing exactly what she should be.
We spent some time with Judy (who's body products aren't nearly as irritating to Mom as they used to be- bonus), who explained how chemo will go. We'll arrive at 8:30am, Mom will have blood drawn, vital signs taken, and be started on IV fluids. Once she's completed one bag of IV fluids, she'll get the two chemo drugs back to back with more IV fluid, taking overall about 5 hours. She can read, sleep, listen to tunes, watch TV, eat, whatever makes her happiest during this time. She'll be given anti-nausea meds prophylatically, as well as a regime to follow for when she gets home in case nausea kicks in.
Before every treatment, her blood values and kidney function will be assessed. After, she may experience some fatigue, which may or may not increase as treatments go on. She will loose her hair in a few weeks (and I don't doubt she'll look just like Demi Moore in GI Jane- another bonus), but overall this chemo regime is very well tolerated. There is no immediate need for live in help or nursing. Just as long as she's got friends close by to call on (no shortage there).
Fortunately I'll be able to be with Mom for the first four treatments she receives, providing she stays on track. After that, we'll need help with rides and such, and Susan E. will be all over coordinating that.
That's where we're at. Mom is feeling very ready, scared, but ready. I think the delicious dinner we're having tonight thanks to Lynn G. will help ease her nerves :) I know cooking for me wasn't part of the deal, but I PROMISE to make Mom a delicious lunch tomorrow in place of the second helping.
Tired of thinking about chemo for tonight, so I'll leave it there for now. Everyone responds to treatment differently, so there's no point in over thinking the "what ifs" tonight. Mom knows that whatever she needs down the road, all she has to do is ask her extraordinary network of loved ones!
2. When she has a "paper project" to get home to, but ends up browsing at Marshall's with me instead.
3. Wants to stay up at watch the latest installment of "The Complete Jane Austen," and will probably try to hold my hand.
4. Acts like a kid on Christmas when she finds food in the cooler outside, and can't wait to heat it up.
5. Can't wait to heat it up so much so that she kills a few handfuls of Trader Joe's veggie chips while doing laundry, tackling the "paper project", returning phone calls, and planning a girls weekend to Kripalu in May.
Chemo- hit us with your best shot. We had our appointment with Dr. D this afternoon and Mom is scheduled to start chemo on Monday, providing all her blood work and kidney function tests look okay. If we don't hear otherwise from Dr. D tomorrow, we are to assume that Monday is a go.
We've weighed the pros and the cons, we know what she has to do to keep healthy throughout this process, and Mom's ready. We addressed a few concerns in our meeting, such as ways to boost her immune system, to which Dr. D said, "good sleep, healthy diet, stay away from sick people, and HAND WASHING!" All those products out there- gimmicks. She said Mom could spend a fortune on products that claim to boost the immune system, but there's no proof to any of them. So that was reassuring because Mom is already doing exactly what she should be.
We spent some time with Judy (who's body products aren't nearly as irritating to Mom as they used to be- bonus), who explained how chemo will go. We'll arrive at 8:30am, Mom will have blood drawn, vital signs taken, and be started on IV fluids. Once she's completed one bag of IV fluids, she'll get the two chemo drugs back to back with more IV fluid, taking overall about 5 hours. She can read, sleep, listen to tunes, watch TV, eat, whatever makes her happiest during this time. She'll be given anti-nausea meds prophylatically, as well as a regime to follow for when she gets home in case nausea kicks in.
Before every treatment, her blood values and kidney function will be assessed. After, she may experience some fatigue, which may or may not increase as treatments go on. She will loose her hair in a few weeks (and I don't doubt she'll look just like Demi Moore in GI Jane- another bonus), but overall this chemo regime is very well tolerated. There is no immediate need for live in help or nursing. Just as long as she's got friends close by to call on (no shortage there).
Fortunately I'll be able to be with Mom for the first four treatments she receives, providing she stays on track. After that, we'll need help with rides and such, and Susan E. will be all over coordinating that.
That's where we're at. Mom is feeling very ready, scared, but ready. I think the delicious dinner we're having tonight thanks to Lynn G. will help ease her nerves :) I know cooking for me wasn't part of the deal, but I PROMISE to make Mom a delicious lunch tomorrow in place of the second helping.
Tired of thinking about chemo for tonight, so I'll leave it there for now. Everyone responds to treatment differently, so there's no point in over thinking the "what ifs" tonight. Mom knows that whatever she needs down the road, all she has to do is ask her extraordinary network of loved ones!
Tuesday, January 22, 2008
Hallelujah for Heidi
Heidi is Dr. D's secretary, but I really hate that word because she's so much more than that (as is the case with most administrative assistants). She has been our go to gal for everything. She got our CT scans printed on CDs for us, she advised us to make our DFCI appointment one week later than we had because they'd need time to read the pathology slides (which she also facilitated the FedExing of). She's just really with it, and when she says she'll do something, she does it.
She just called, and Mom and I will head to Dr. D's on Thursday afternoon at 3:40pm with a 24 hour urine collection in hand. Labs will be drawn, and all necessary pre-chemo tests will be conducted. Mom will most likely begin chemo early next week, providing all test results look okay.
Heidi also did some investigative work and found that the stones were in fact sent for analysis on Jan. 6, and she's calling pathology as we speak to find out what the heck is taking so long.
I love this woman. I love her because she does her job, and does it well. She follows through, never rushes me off the phone, and answers my millions of questions. I think she used to be a nurse.
Speaking of top notch women, Didi is by for a visit today and to collect the rest of her belongings that are at the house. Mom has so been looking forward to seeing her, since the majority of the month Didi was at the house, my mom spent in bed or at the hospital. They're enjoying some of Anne B's delicious minestrone I defrosted last week, and for dinner, turkey chili from Marilyn D. who delivered our first official Helping Hands meal!
Today feels good. We've finally got a plan in place, the stones aren't MIA, the house is filled with delicious food, Mom gets to pee in a jug for the next 24 hours. Oh yes, and my new bookshelf arrived today. Maybe not exciting for the masses, but I'm all about simple pleasures these days.
She just called, and Mom and I will head to Dr. D's on Thursday afternoon at 3:40pm with a 24 hour urine collection in hand. Labs will be drawn, and all necessary pre-chemo tests will be conducted. Mom will most likely begin chemo early next week, providing all test results look okay.
Heidi also did some investigative work and found that the stones were in fact sent for analysis on Jan. 6, and she's calling pathology as we speak to find out what the heck is taking so long.
I love this woman. I love her because she does her job, and does it well. She follows through, never rushes me off the phone, and answers my millions of questions. I think she used to be a nurse.
Speaking of top notch women, Didi is by for a visit today and to collect the rest of her belongings that are at the house. Mom has so been looking forward to seeing her, since the majority of the month Didi was at the house, my mom spent in bed or at the hospital. They're enjoying some of Anne B's delicious minestrone I defrosted last week, and for dinner, turkey chili from Marilyn D. who delivered our first official Helping Hands meal!
Today feels good. We've finally got a plan in place, the stones aren't MIA, the house is filled with delicious food, Mom gets to pee in a jug for the next 24 hours. Oh yes, and my new bookshelf arrived today. Maybe not exciting for the masses, but I'm all about simple pleasures these days.
Oh No They Didn't
The subject title should be said with attitude, and a finger waving in the air.
Because, yes, they did. Or they might have. We're not entirely sure.
Mom has been calling every few days or so to find out the results from the kidney stones collected the morning of her last hospital admission (Jan. 6), because we were told they can take weeks to analyze. She called Dr. K's office (urologist) yesterday again, and there's no record of them.
WHHHHHHHHHHAAAAAAAAAAAAAAAATTTTTTTTTTTTT? She passed three of those massive buggers, has been doing tons of research, and the only way we're going to know how to prevent them is based on their pathology. She's livid. Who wouldn't be? She made a point to stress to her nurse that day the importance of the stones being sent to the lab.
I spoke with Dr. D's office this morning, gave her secretary the run down of what happened Friday at DFCI, and expect a phone call back from the secretary to schedule an appt for later this week, or from Dr. D herself to talk more. Either way, I will ask them to look in to the stone thing as well since they're all part of the St. Frannie system.
Because, yes, they did. Or they might have. We're not entirely sure.
Mom has been calling every few days or so to find out the results from the kidney stones collected the morning of her last hospital admission (Jan. 6), because we were told they can take weeks to analyze. She called Dr. K's office (urologist) yesterday again, and there's no record of them.
WHHHHHHHHHHAAAAAAAAAAAAAAAATTTTTTTTTTTTT? She passed three of those massive buggers, has been doing tons of research, and the only way we're going to know how to prevent them is based on their pathology. She's livid. Who wouldn't be? She made a point to stress to her nurse that day the importance of the stones being sent to the lab.
I spoke with Dr. D's office this morning, gave her secretary the run down of what happened Friday at DFCI, and expect a phone call back from the secretary to schedule an appt for later this week, or from Dr. D herself to talk more. Either way, I will ask them to look in to the stone thing as well since they're all part of the St. Frannie system.
Sunday, January 20, 2008
Miss Manners Would NOT Approve
Mom recently received this little gem from our dear friend, Lynn G. Excellent for keeping the dome toasty if she is ever sans hair. I wanted to find a great picture of it to post, and felt a little guilty googling "fuck cancer," but you wouldn't believe the world of "fuck cancer" gear out there that exists. It's an untapped market, and I think there is more we could do with this expressive verb. Maybe the Talbot Group could use it..."F*** Relocation" on the front, and on the back, "Don't worry, we know how you feel, and we're here to help."
Talk about speaking to all generations. Thanks Lynn, for the comic relief :) I can't promise Mom will be wearing it around Farmington Valley, but it will get some use inside the house, I'm sure.
Food for Thought
When I posted Friday night, it was to give everyone a brief overview of our appointment because I know many people were waiting to hear about it. I thought I would share a few more details as I sit down to look over my notes and prepare to call Dr. D tomorrow.
Mom has really made up her mind to do the chemo. Radiation is not an option (some have asked) because that sort of treatment is very localized, and often used just as much before surgery to reduce a tumor's size, as well as eradicate residual cancer tissue that may have been left over after surgery. Funny you bring up Europe, Margot, because our DFCI doc, Dr. C, has good colleagues in Italy and England whom he wrote his most recent article with, and I immediately said, "So should we go to Europe?" He said they're very much in the same boat we are in terms of successful studies in this area. There is currently one clinical trial with about 400 patients, which in the clinical trial world isn't a whole heck of a lot. We're not at the clinical trial point yet, and although the medical world doesn't have a ton of evidence based ideas for Mom, I think it is best to stick to what we do know.
The two kinds of chemotherapy being offered are very common, frequently used in transitional cell cancers, and tolerated well. Since this is considered adjunctive therapy (meaning, after the surgery), she would only need four cycles total. It would go something like this:
Week 1: cisplatin & Gemzar
Week 2: Gemzar
Week 3: Off
Four complete totals would be approximately 12 weeks, but sometimes symptoms or low blood counts can force us to put off chemo for an extra week, but this is just to give you a sense of the schedule Mom would have.
It's the cisplatin that is known for being rough on the kidneys, so before each treatment, certain labs that measure kidney function would be assessed. If Lil Lefty can't tolerate the cisplatin, then they just won't give it to her. They can also replace it with a chemo drug from the same family called carboplatin.
I can hear the question in my head now..."Then why don't they just give her the carboplatin to begin with?"
Cisplatin is believe to be more effective in renal cancers, which makes it the ideal chemo drug of choice for Mom. Carboplatin is just a back up, but not our first choice.
There is no way of knowing, but Mom could just sail through these four cycles and Lil Lefty will behave herself, and we can feel assured that we used all the tools in our toolbox. But if we run into bumps along the way, we will deal with them as they come.
In order for these chemo to be most effective, Mom must begin treatment within two to three months of her surgery, so between February 3 and March 3. We delivered another stool sample Friday (in your standard brown lunch bag with SPECIMEN written all over it), so hopefully we'll get another negative on the c.diff front.
Overall, Mom is doing worlds better. Her appetite has certainly perked up, her energy improves every day, and she's starting to take on little projects around the house. She's even ventured out for a few meals. We went to Toshi Thursday and I really had guard my plate from her wandering chopsticks. All excellent signs that she is ready to tackle what is ahead.
Not sure if Dr. D will be in the office tomorrow or not, but as soon as she, Mom, and I have a little brainstorm session, I'll let everyone know what we've come up with.
Susan and Marilyn D. have been hard at work preparing for the commencement of the meal deliveries on Tuesday. We went through countless cookbooks of delicious cancer fighting recipes and it certainly got Mom's taste buds revved. Making herself food, especially when she's on her own, has never been a priority (hence her steady diet of peanuts). Thank you to all those wonderful cooks who've volunteered their resources! Maybe the cooks can comment on what they're creating so we can all salivate together.
Mom has really made up her mind to do the chemo. Radiation is not an option (some have asked) because that sort of treatment is very localized, and often used just as much before surgery to reduce a tumor's size, as well as eradicate residual cancer tissue that may have been left over after surgery. Funny you bring up Europe, Margot, because our DFCI doc, Dr. C, has good colleagues in Italy and England whom he wrote his most recent article with, and I immediately said, "So should we go to Europe?" He said they're very much in the same boat we are in terms of successful studies in this area. There is currently one clinical trial with about 400 patients, which in the clinical trial world isn't a whole heck of a lot. We're not at the clinical trial point yet, and although the medical world doesn't have a ton of evidence based ideas for Mom, I think it is best to stick to what we do know.
The two kinds of chemotherapy being offered are very common, frequently used in transitional cell cancers, and tolerated well. Since this is considered adjunctive therapy (meaning, after the surgery), she would only need four cycles total. It would go something like this:
Week 1: cisplatin & Gemzar
Week 2: Gemzar
Week 3: Off
Four complete totals would be approximately 12 weeks, but sometimes symptoms or low blood counts can force us to put off chemo for an extra week, but this is just to give you a sense of the schedule Mom would have.
It's the cisplatin that is known for being rough on the kidneys, so before each treatment, certain labs that measure kidney function would be assessed. If Lil Lefty can't tolerate the cisplatin, then they just won't give it to her. They can also replace it with a chemo drug from the same family called carboplatin.
I can hear the question in my head now..."Then why don't they just give her the carboplatin to begin with?"
Cisplatin is believe to be more effective in renal cancers, which makes it the ideal chemo drug of choice for Mom. Carboplatin is just a back up, but not our first choice.
There is no way of knowing, but Mom could just sail through these four cycles and Lil Lefty will behave herself, and we can feel assured that we used all the tools in our toolbox. But if we run into bumps along the way, we will deal with them as they come.
In order for these chemo to be most effective, Mom must begin treatment within two to three months of her surgery, so between February 3 and March 3. We delivered another stool sample Friday (in your standard brown lunch bag with SPECIMEN written all over it), so hopefully we'll get another negative on the c.diff front.
Overall, Mom is doing worlds better. Her appetite has certainly perked up, her energy improves every day, and she's starting to take on little projects around the house. She's even ventured out for a few meals. We went to Toshi Thursday and I really had guard my plate from her wandering chopsticks. All excellent signs that she is ready to tackle what is ahead.
Not sure if Dr. D will be in the office tomorrow or not, but as soon as she, Mom, and I have a little brainstorm session, I'll let everyone know what we've come up with.
Susan and Marilyn D. have been hard at work preparing for the commencement of the meal deliveries on Tuesday. We went through countless cookbooks of delicious cancer fighting recipes and it certainly got Mom's taste buds revved. Making herself food, especially when she's on her own, has never been a priority (hence her steady diet of peanuts). Thank you to all those wonderful cooks who've volunteered their resources! Maybe the cooks can comment on what they're creating so we can all salivate together.
Friday, January 18, 2008
Calling All Positive Energy
The cleaning crew was arriving when we were finally escorted into Dr. C's office at 5:15pm for our 4pm appointment. At least they have a good variety of snacks to choose from, and it gave Mom and I time to plan our trip to the seven wonders of the world.
When we were finally in there, we were given his full attention. He'd clearly already breezed over Mom's file, we filled in some blanks, and he would consult her chart on the computer every so often.
He didn't say anything we didn't already know, but it was how he reiterated the information that had an effect on us.
Off the bat, he scored points with us because a) he just happened to finish writing an article on adjunctive chemotherapy in transitional cell cancers, b) he also has an extra ureter from one kidney, and c) French is his primary language- he's Lebonese.
What was made abundantly clear to us, is that if Mom does not do chemotherapy now, and the cancer comes back later on, it could have spread, and will therefor be much harder to treat. He threw out some unattractive statistics that I just let go in one ear and out the other, and then docked him one point.
He wasn't pushing chemo necessarily, but that was the message we both took home.
His Against Chemo Criteria: Mom's had a rough recovery, there is no lymph node involvement, she has had a difficult time keeping her creatinine within normal limits, and that there is little evidence in cases such as hers.
His Pro Chemo Criteria: This is grade T-3, she is young & healthy, this could ultimately prolong her life, and worse comes to worse and her left kidney freaks out after the first cycle, she can stop.
He didn't seem at all concerned about her high blood pressure, therefor that should not be a factor in Mom's decision. The only thing we need to really assess before she makes her decision is her kidney function.
As Mom put it, she can't be at peace until she knows she is using every tool in her toolbox to kick this cancer's booty. She didn't actually say booty, but you get the point.
Monday, I'll speak with Dr. D at St. Frannie, find out what her kidney function looked like as of Tuesday, and have a conversation about what we discussed wtih Dr. C.
Mom is clearly scared, and is having a hard time mustering up that "go get 'em" attitude, because in her mind the decision is made, and chemo is a reality. That's where I hope you all, her near and dear will come in. She needs to hear it from the people around her, especially those of you who have survived the unknown. It can be done!
When we were finally in there, we were given his full attention. He'd clearly already breezed over Mom's file, we filled in some blanks, and he would consult her chart on the computer every so often.
He didn't say anything we didn't already know, but it was how he reiterated the information that had an effect on us.
Off the bat, he scored points with us because a) he just happened to finish writing an article on adjunctive chemotherapy in transitional cell cancers, b) he also has an extra ureter from one kidney, and c) French is his primary language- he's Lebonese.
What was made abundantly clear to us, is that if Mom does not do chemotherapy now, and the cancer comes back later on, it could have spread, and will therefor be much harder to treat. He threw out some unattractive statistics that I just let go in one ear and out the other, and then docked him one point.
He wasn't pushing chemo necessarily, but that was the message we both took home.
His Against Chemo Criteria: Mom's had a rough recovery, there is no lymph node involvement, she has had a difficult time keeping her creatinine within normal limits, and that there is little evidence in cases such as hers.
His Pro Chemo Criteria: This is grade T-3, she is young & healthy, this could ultimately prolong her life, and worse comes to worse and her left kidney freaks out after the first cycle, she can stop.
He didn't seem at all concerned about her high blood pressure, therefor that should not be a factor in Mom's decision. The only thing we need to really assess before she makes her decision is her kidney function.
As Mom put it, she can't be at peace until she knows she is using every tool in her toolbox to kick this cancer's booty. She didn't actually say booty, but you get the point.
Monday, I'll speak with Dr. D at St. Frannie, find out what her kidney function looked like as of Tuesday, and have a conversation about what we discussed wtih Dr. C.
Mom is clearly scared, and is having a hard time mustering up that "go get 'em" attitude, because in her mind the decision is made, and chemo is a reality. That's where I hope you all, her near and dear will come in. She needs to hear it from the people around her, especially those of you who have survived the unknown. It can be done!
Thursday, January 17, 2008
I Might Have to Move Home
Susan E. and Marilyn D. came by Mom's house last night, armed with every cancer fighting cookbook and recipe you could possibly imagine. Mom has chosen 20 of her favorites, and starting next week (I think?), friends who have volunteered to cook for Mom will select some of these recipes, and deliver the goods to a little cooler outside Mom's house. Seriously...I might have to move home.
What a wonderful gift they are giving Mom, because as Margot posted, eating when you have no appetite is such a challenge. I think having delicious, home-cooked food, just ready and waiting will make it easier for my mom to be inspired and chow down.
She also had a visit from Marilyn R. (the only Jewish guardian angel that ever was, with a master's in Jewish Studies from UCONN, no less), made a trip to the nail salon to have a suspect nail checked out, and hopefully completed a little to-do list for me when I arrive home two hours after I shut down this computer.
What a wonderful gift they are giving Mom, because as Margot posted, eating when you have no appetite is such a challenge. I think having delicious, home-cooked food, just ready and waiting will make it easier for my mom to be inspired and chow down.
She also had a visit from Marilyn R. (the only Jewish guardian angel that ever was, with a master's in Jewish Studies from UCONN, no less), made a trip to the nail salon to have a suspect nail checked out, and hopefully completed a little to-do list for me when I arrive home two hours after I shut down this computer.
Tuesday, January 15, 2008
Be Careful What You Wish For
Mom said she wished I'd add more pictures to the blog. Does that mean pictures of her with bad haircuts as a child? Sure, why not?
Isn't she adorable?
"Dear Santa, All I Want for Christmas..."
If Mom's nurse had wrote to Santa that all she wanted for Christmas was a four day old stool and urine sample, well then this year she would have gotten exactly what she wanted.
I kid you not. When Dr. D arrived in our exam room, she let us know that the results from the specimens delivered last Friday were unable to be processed. When they were delivered to the front desk in a holiday bag (the only bag Mom had of the appropriate dimensions) and said to be for our nurse, either it wasn't made clear that there were specimens in that festive bag, or the woman behind the desk didn't hear correctly, because the bag was stashed under Judy's desk, only to be discovered yesterday! We're talking, fa la la la la.
Thankfully, nurses think finding a bag of caca and pee pee is hilarious. So we gave them all a good laugh, but have no idea if Mom's c.diff is gone. Fair trade.
We have every reason to believe that it is, considering her symptoms seems to be subdued, if not absent most of the time.
Nothing monumental was discussed today, other than Mom has to continue to drink at least 2 litres of water daily, MUST increase her daily caloric intake, needs to follow up with her cardiologist to get her BP under control, and we'll call Dr. D on Monday to report what we discussed with Dr. C at DFCI.
Dr. D was concerned that Mom is significantly anemic, so she's testing her blood for all sorts of vitamin deficiencies, and urine for microscopic blood loss. She did not seem to have a reasonable answer for the anemia, and believed that diet was most likely not the cause, but her labs will be kept a close eye on and adjustments made where necessary.
We took Casey for a long walk this morning, and I think Mom is really feeling that this trip to DFCI will help steer us in the right direction, because as Dr. D said repeatedly, to treat with chemo is "controversial." Fortunately, Dr. D seemed to think that overall, Mom is finally getting back to a safe place in her recovery, which was so encouraging to hear.
I left back for Boston after watching Mom scarf a big hot cocoa topped with whipped cream, and a warmed croissant, and will head back to Avon tomorrow or Thursday. Now if only I were under doctor's orders to eat croissants...
I kid you not. When Dr. D arrived in our exam room, she let us know that the results from the specimens delivered last Friday were unable to be processed. When they were delivered to the front desk in a holiday bag (the only bag Mom had of the appropriate dimensions) and said to be for our nurse, either it wasn't made clear that there were specimens in that festive bag, or the woman behind the desk didn't hear correctly, because the bag was stashed under Judy's desk, only to be discovered yesterday! We're talking, fa la la la la.
Thankfully, nurses think finding a bag of caca and pee pee is hilarious. So we gave them all a good laugh, but have no idea if Mom's c.diff is gone. Fair trade.
We have every reason to believe that it is, considering her symptoms seems to be subdued, if not absent most of the time.
Nothing monumental was discussed today, other than Mom has to continue to drink at least 2 litres of water daily, MUST increase her daily caloric intake, needs to follow up with her cardiologist to get her BP under control, and we'll call Dr. D on Monday to report what we discussed with Dr. C at DFCI.
Dr. D was concerned that Mom is significantly anemic, so she's testing her blood for all sorts of vitamin deficiencies, and urine for microscopic blood loss. She did not seem to have a reasonable answer for the anemia, and believed that diet was most likely not the cause, but her labs will be kept a close eye on and adjustments made where necessary.
We took Casey for a long walk this morning, and I think Mom is really feeling that this trip to DFCI will help steer us in the right direction, because as Dr. D said repeatedly, to treat with chemo is "controversial." Fortunately, Dr. D seemed to think that overall, Mom is finally getting back to a safe place in her recovery, which was so encouraging to hear.
I left back for Boston after watching Mom scarf a big hot cocoa topped with whipped cream, and a warmed croissant, and will head back to Avon tomorrow or Thursday. Now if only I were under doctor's orders to eat croissants...
We Heart Jane Austin
Mom spent quite a bit of time at the office yesterday, but when she arrived home, she was still one of the few houses without power. By the time she let Casey out, got the mail, and pulled in the garbage can, it was back on!
After I arrived we ate some dinner and brainstormed a bit for our appointment today. Our biggest task: to gently indicate to Mom's nurse that her body products are slightly over-bearing. It's a TERRIBLE position to be in, but these days Mom is astonishingly sensitive to scented products. I was even put on a mission to find unscented hand soap, which I don't reccomend anyone else attempt. Did you know purell is even scented?
These sorts of things never used to bother her, but these days it's enough to make her stomach turn. All her delicious lotions and perfumes are stashed under the sink until further notice.
Nothing bothers me more than healthcare professionals who wear a) heavily scented anything and b) fake nails. Do you have any idea the amount of bacteria and yuck can live under there? Makes me dance in my chair a bit.
So other than being the body product police, we're going to put our heads together with Dr. D, revisit the plan (to chemo or not to chemo), and get all the necessary information together for our drip to Boston Friday.
Oh of course- how can I forget Jane Austin! We watched the first of the "The Complete Jane Austin" being featured on WGBH. Every Sunday at 9pm a film based on one of her novels is being shown. Just in time too, cause Mom LOVES Janie A. This week's was not so great, but we have high hopes for the weeks to come.
After I arrived we ate some dinner and brainstormed a bit for our appointment today. Our biggest task: to gently indicate to Mom's nurse that her body products are slightly over-bearing. It's a TERRIBLE position to be in, but these days Mom is astonishingly sensitive to scented products. I was even put on a mission to find unscented hand soap, which I don't reccomend anyone else attempt. Did you know purell is even scented?
These sorts of things never used to bother her, but these days it's enough to make her stomach turn. All her delicious lotions and perfumes are stashed under the sink until further notice.
Nothing bothers me more than healthcare professionals who wear a) heavily scented anything and b) fake nails. Do you have any idea the amount of bacteria and yuck can live under there? Makes me dance in my chair a bit.
So other than being the body product police, we're going to put our heads together with Dr. D, revisit the plan (to chemo or not to chemo), and get all the necessary information together for our drip to Boston Friday.
Oh of course- how can I forget Jane Austin! We watched the first of the "The Complete Jane Austin" being featured on WGBH. Every Sunday at 9pm a film based on one of her novels is being shown. Just in time too, cause Mom LOVES Janie A. This week's was not so great, but we have high hopes for the weeks to come.
Monday, January 14, 2008
It's Like Camping
I spoke with Mom right before she went to bed last night. Anxiety was getting the best of her, and understandably so. She was alone, with a massive snow storm approaching, and all she could think of was the last snow storm when she had to take a ride in the ambulance. I think she's also maxed out on magazines, TV, and sitting around, which I think is a good sign. Mentally, she's wanting to branch out and do more, but her physical energy level hasn't quite caught up with her brain.
Fortunately, the good ole' zofran and ambien double team did it's job, and the only thing in need of serious repair at the house is the electricity. There is none. That means no electric blanket, no tea, no soft-boiled egg, no phone, no nada. It's like camping really.
She had a lovely breakfast (first meal out) with a friend, and is now on her way to the office. She hasn't stepped foot in there since before her surgery, but she's beginning to feel really bored, wants to say hello, sync her computers, and you know- have some heat.
She and I are headed to Dr. D's tomorrow afternoon to re-assess and prepare ourselves for our trip to Dana Farber Friday. Unless anything monumental happens (and let's hope not), I'll post after our appointment.
Fortunately, the good ole' zofran and ambien double team did it's job, and the only thing in need of serious repair at the house is the electricity. There is none. That means no electric blanket, no tea, no soft-boiled egg, no phone, no nada. It's like camping really.
She had a lovely breakfast (first meal out) with a friend, and is now on her way to the office. She hasn't stepped foot in there since before her surgery, but she's beginning to feel really bored, wants to say hello, sync her computers, and you know- have some heat.
She and I are headed to Dr. D's tomorrow afternoon to re-assess and prepare ourselves for our trip to Dana Farber Friday. Unless anything monumental happens (and let's hope not), I'll post after our appointment.
Sunday, January 13, 2008
Spamalot
Creepy...after all the Monty Python references, I saw an advert for Spamalot in Boston this month. Any Bostonians who need a good laugh, I highly recommend it!
"Best Night of Sleep in a Long Time"
And that's a direct quote. Not to mention music to my ears. Not to toot my own horn, but I suggested Mom take a zofran (anti-nausea that lasts 8 hours) with her ambien, and see if she could get a full night's sleep. Et voila!
When I spoke to her, she was enjoying CBS Sunday Morning and had already had breakfast.
Mom slept well, Pats kicked booty again, and I had an oatmeal chocolate chip cookie for breakfast. What could be better?
A snow day tomorrow!
When I spoke to her, she was enjoying CBS Sunday Morning and had already had breakfast.
Mom slept well, Pats kicked booty again, and I had an oatmeal chocolate chip cookie for breakfast. What could be better?
A snow day tomorrow!
Saturday, January 12, 2008
Soft-Boiled Eggs
They remind me of my mother. She always ate them out of these little darling cups, and spooned the top off juuuuuust right and would sometimes let me scoop the egg white out of the discarded top. When I try to do this, even as an adult, I can never get the entrance tap just right, and it ends up being more like a joust between me and the egg. Then yolk is splattered everywhere, and I have to go change my clothes.
Runny, and frighteningly similar to the color of mucus during the windy season in Tejas, these seem to be my Mom's favorite little treat. She took a long nap this morning well in to the afternoon, continues to drink plenty of water, and kept down a soft-boiled egg she made herself this afternoon. When I spoke to her, she had just tidied the house a bit, and was sitting down to read a magazine (from the impressive stack Marilyn has supplied, I assume).
She officially can cross one medication off her list, because she's completed her course of antibiotics to kick the UTI. This is especially exciting because this monster pill always seems to give Mom and upset stomach. We're in no short supply of those symptoms as it is, thank you.
Runny, and frighteningly similar to the color of mucus during the windy season in Tejas, these seem to be my Mom's favorite little treat. She took a long nap this morning well in to the afternoon, continues to drink plenty of water, and kept down a soft-boiled egg she made herself this afternoon. When I spoke to her, she had just tidied the house a bit, and was sitting down to read a magazine (from the impressive stack Marilyn has supplied, I assume).
She officially can cross one medication off her list, because she's completed her course of antibiotics to kick the UTI. This is especially exciting because this monster pill always seems to give Mom and upset stomach. We're in no short supply of those symptoms as it is, thank you.
I Barf In Your General Direction
You'd have to be a Monty Python fan to get that, and as evidenced by the comments on the previous post, my sister and I were raised on it.
Mom used to have a real fear of throwing up. She would sit and meditate away the nausea when she was sick- do ANYTHING to not actually have to vomit. The good news is she's gotten over that fear through this entire debacle. The bad news is that she's over it, but it keeps coming back anyway! She spent the better part of last night praying to the porcelain Goddess, if you get my drift. We're not entirely sure why, could be a bug, could just be a colitis flare up, we probably won't ever know. She's been able to hydrate fairly well since about 4am, and hasn't throw up since about then, and I've encouraged her just to keep hydrating and rest her body as much as she needs, and we'll work up to solids later today. Just like anyone who'd been vomiting, Mom will be best off with bland foods, broth, applesauce, bananas, etc. She tried some meatballs last night that I don't think caused this in anyway, but certainly didn't help either.
Quite a few people have been in and out of the house recently, so in the interest of not stressing out Mom's system, just make sure any visitors wash their hands well before touching a thing, and keep it short and sweet. She's too polite to say anything, but I'm not!
I'm not going to call the house because I don't want to disturb her resting, but I'll check in later this afternoon and let everyone know how she's doing.
Mom used to have a real fear of throwing up. She would sit and meditate away the nausea when she was sick- do ANYTHING to not actually have to vomit. The good news is she's gotten over that fear through this entire debacle. The bad news is that she's over it, but it keeps coming back anyway! She spent the better part of last night praying to the porcelain Goddess, if you get my drift. We're not entirely sure why, could be a bug, could just be a colitis flare up, we probably won't ever know. She's been able to hydrate fairly well since about 4am, and hasn't throw up since about then, and I've encouraged her just to keep hydrating and rest her body as much as she needs, and we'll work up to solids later today. Just like anyone who'd been vomiting, Mom will be best off with bland foods, broth, applesauce, bananas, etc. She tried some meatballs last night that I don't think caused this in anyway, but certainly didn't help either.
Quite a few people have been in and out of the house recently, so in the interest of not stressing out Mom's system, just make sure any visitors wash their hands well before touching a thing, and keep it short and sweet. She's too polite to say anything, but I'm not!
I'm not going to call the house because I don't want to disturb her resting, but I'll check in later this afternoon and let everyone know how she's doing.
Thursday, January 10, 2008
Chicken Soup for the Hair
Mom's been nourishing herself as best she can, but the poor mop on top of her head had been seriously neglected. Today, Dani showed up, brought one of the big heavy stools into the bathroom so Mom could watch in the mirror, and gave Mom a new do! Much shorter than she's been wearing it, which she likes because all the curl came back immediately.
As if that wasn't enough, she said it was her gift to Mom. Made Mom cry, then of course made me cry when Mom told me. How a good cut can bring out the best in us. Thank you, Miss Dani. For making Mom so happy, and for cutting off her hair so I don't have to blow dry it any more when I'm home.
As if that wasn't enough, she said it was her gift to Mom. Made Mom cry, then of course made me cry when Mom told me. How a good cut can bring out the best in us. Thank you, Miss Dani. For making Mom so happy, and for cutting off her hair so I don't have to blow dry it any more when I'm home.
Watch Out Boston
Mom's case has been re-assigned to another doctor at DFCI, and we'll meet him for the first time next Friday at 4:15pm. Amazingly, they would have been able to fit us in as early as tomorrow, but it will take at least a week for all the medical records to be faxed from various offices, pathology slides to be Fed-Exed, and medical records organized. DFCI likes to look at all the specimines collected and read them on their own, which I think is an excellent policy, and well worth the wait.
I've spent all morning on the phone with administrative assistants and doctors, and every single one of them was lovely. My grandfather told me the other day that the medical system is a disaster- to which I said, "EASY"- to which he said, "Except for you, of course." Today, I disagree. In a perfect world every medical facility would have access to all patient records so we woudln't waste all this time trying to coordinate it all, but at least the people I've been dealing with have been polite, attentive, and thoughtful. Makes this process so much more tolerable.
Just as a reminder, if you haven't already contacted Susan Eastman, and you're interested in being part of Mom's Helping Hands network, Susan's our go-to gal, so get in touch with her! eastmans@raveisre.com
I've spent all morning on the phone with administrative assistants and doctors, and every single one of them was lovely. My grandfather told me the other day that the medical system is a disaster- to which I said, "EASY"- to which he said, "Except for you, of course." Today, I disagree. In a perfect world every medical facility would have access to all patient records so we woudln't waste all this time trying to coordinate it all, but at least the people I've been dealing with have been polite, attentive, and thoughtful. Makes this process so much more tolerable.
Just as a reminder, if you haven't already contacted Susan Eastman, and you're interested in being part of Mom's Helping Hands network, Susan's our go-to gal, so get in touch with her! eastmans@raveisre.com
Getting the Hang of This
I was so pleased when my mom called me yesterday afternoon to tell me she'd called Dr. K's office to get the results of her blood test (specifically the creatinine value), and to see if the pathology results were back from the three kidney stones she'd passed. A few weeks ago, it would have been me doing this, so it was great to see Mom take the reins and advocate for herself. When this all started, she could barely remember the name of her Atenolol, because it's never been in her nature to just think about herself, but I believe she's starting to really take control, ask questions, and become an informed consumer. It will benefit her in the long run.
I know it has been challenging for her to be so self-centered, but right now it's all about doing whatever is best for her, period. I think she's catching on.
She and Didi accomplished a ton yesterday! Ran errands, took down Christmas decorations, including the tree, and she was certainly wiped by the time we spoke around 7pm.
Next week Mom will officially be "on her own" with the exception of a quick overnight visit from me so we can go to her next Dr. D appointment together. Over the course of this week and weekend, she's going to assess what will be best for her. Designated daily visitors? Meal deliveries? It will depend on her energy and comfort level.
Today she'll have a visit from Dani, who's offered to come to the house and give her a new short do! And I believe Casey is being picked up by a Helping Hands team member to get groomed tomorrow. What a beautifully coiffed household it will be! Meanwhile, it's my mission to communicate with Dana Farber Cancer Institute (DFCI) here in Boston, and schedule an appointment with a new oncologist to review Mom's case and get a second opinion. Naturally, the oncologist we'd worked with before moved back to New Orleans, so we'll be starting from scratch again. No biggie- nothing we haven't done before!
I know it has been challenging for her to be so self-centered, but right now it's all about doing whatever is best for her, period. I think she's catching on.
She and Didi accomplished a ton yesterday! Ran errands, took down Christmas decorations, including the tree, and she was certainly wiped by the time we spoke around 7pm.
Next week Mom will officially be "on her own" with the exception of a quick overnight visit from me so we can go to her next Dr. D appointment together. Over the course of this week and weekend, she's going to assess what will be best for her. Designated daily visitors? Meal deliveries? It will depend on her energy and comfort level.
Today she'll have a visit from Dani, who's offered to come to the house and give her a new short do! And I believe Casey is being picked up by a Helping Hands team member to get groomed tomorrow. What a beautifully coiffed household it will be! Meanwhile, it's my mission to communicate with Dana Farber Cancer Institute (DFCI) here in Boston, and schedule an appointment with a new oncologist to review Mom's case and get a second opinion. Naturally, the oncologist we'd worked with before moved back to New Orleans, so we'll be starting from scratch again. No biggie- nothing we haven't done before!
Tuesday, January 8, 2008
Counting Sheep is for Everyday Folk
I was having a chat with Jean this morning (Mom's right hand at work), and she told me that a few weeks ago she received an email from Mom who was unable to sleep, so she wrote back, "Why don't you try counting friends, because you've got way more of those then there are sheep in the world." So true. So true!
Thanks to Mom's needing to drink 3 litres of water a day, she wasn't able to get the best night's sleep, but I've reassured her that her body will acclimate if she just stick with it. It's not an easy adjustment, especially if you're not a naturally thirsty person, but it's the best way to keep that kidney healthy and prevent stones.
Nausea comes and goes and keeps her from eating enough. She's down 26 pounds, which is actually within her "healthy zone." It's okay if she stays around there, after all, this will hopefully help lower her blood pressure, but she cannot continue to lose. As she put it, if she'd done this with weight watchers, she would have been awarded a lifetime membership!
The Nurse Ratchet in me comes out every so often, and today I said, I don't care if you're hungry or not. If you're not actively nauseated, you're snacking. Period. Lots of protein, little added salt.
She has a dentist appointment today, then will have some labs drawn. Cross your fingers that her creatinine is at least near normal limits (below 1.2).
In response to Margot's thoughtful question on the last post- I've been happily surprised by the consistent communication between Mom's urologist and oncologist. We haven't quite gotten to the "team meetings" yet, although I'm very familiar with them and have sat in on many at Children's. Where we run in to problems is in the ER, because those doctors are in their own world, and they don't readily look up patient files or call the other teams that are taking care of well-known patients. It might be a cultural thing (I mean of the department, not German vs. Indian physicians), but that is why when Mom was in the ER, I called oncology to let them know she was there, and finally the ER consulted with urology.
As we reevaluate the plan for chemo, I absolutely think a meeting with us, urology, and oncology will be in order. Wonderful suggestion!
Always amazed by how people step up to help. Did you know that when Mom was back in the ER, her sister's Coco and Caline washed and changed every sheet on every bed in the house? I mean, this is what I'm talking about. Practically everyone who walks through that door says, "Okay, I'm here, put me to work"
Amazing.
Thanks to Mom's needing to drink 3 litres of water a day, she wasn't able to get the best night's sleep, but I've reassured her that her body will acclimate if she just stick with it. It's not an easy adjustment, especially if you're not a naturally thirsty person, but it's the best way to keep that kidney healthy and prevent stones.
Nausea comes and goes and keeps her from eating enough. She's down 26 pounds, which is actually within her "healthy zone." It's okay if she stays around there, after all, this will hopefully help lower her blood pressure, but she cannot continue to lose. As she put it, if she'd done this with weight watchers, she would have been awarded a lifetime membership!
The Nurse Ratchet in me comes out every so often, and today I said, I don't care if you're hungry or not. If you're not actively nauseated, you're snacking. Period. Lots of protein, little added salt.
She has a dentist appointment today, then will have some labs drawn. Cross your fingers that her creatinine is at least near normal limits (below 1.2).
In response to Margot's thoughtful question on the last post- I've been happily surprised by the consistent communication between Mom's urologist and oncologist. We haven't quite gotten to the "team meetings" yet, although I'm very familiar with them and have sat in on many at Children's. Where we run in to problems is in the ER, because those doctors are in their own world, and they don't readily look up patient files or call the other teams that are taking care of well-known patients. It might be a cultural thing (I mean of the department, not German vs. Indian physicians), but that is why when Mom was in the ER, I called oncology to let them know she was there, and finally the ER consulted with urology.
As we reevaluate the plan for chemo, I absolutely think a meeting with us, urology, and oncology will be in order. Wonderful suggestion!
Always amazed by how people step up to help. Did you know that when Mom was back in the ER, her sister's Coco and Caline washed and changed every sheet on every bed in the house? I mean, this is what I'm talking about. Practically everyone who walks through that door says, "Okay, I'm here, put me to work"
Amazing.
Monday, January 7, 2008
Home & Happy
Mom sounded great when I spoke to her around noon. She's got to head in to have lab drawn tomorrow, but otherwise things are trending in the right direction! We just need to make sure she continues to produce urine and has no more pain, nausea, or vomitting. Didi is there supervising all household operations too, which is putting my heart at ease for sure!
Admitted. Oh, no, wait, Nevermind.
I spoke with Mom finally around 8:30pm (so as not to be a bother, I was just sending her quick little text messages and she'd text me back bits of info), I discovered that she was actually being treated from the waiting room. She'd had an IV place, blood drawn, meds given, urinalysis collected, and spiral CT scan done all done from the privacy and intimacy of the waiting room. And she hadn't been seen by a urologist yet.
This made me just about blow my lid, so I called the oncologist on call, because in my book Mom is now a cancer patient first and foremost, and with the host of issues she's had going on, I don't think it was at all appropriate for her to be sitting in the ER waiting room for five and a half hours. He called me back immediately and was fantastic. Dr. G knew nothing about my mom's case, but got a brief history for me, seemed surprised that she had been discharged so quickly that morning and without a stent, and called the ER to assess help move things along.
He called me back to report that Mom was going to be admitted for pain management and to flush out her kidneys in hopes of getting her creatinine closer to normal limits. While I was receiving this phone call, Mom was being delivered the same news by the ER attending. All I could think of was when I was wait-listed from every college under the sun and my mom kept saying, "squeaky wheel gets the grease!"
It's 6:30am and I just called the hospital to find out how she did overnight, but apparently she was sent home from the ER! Hopefully that's a good thing and what my Mom wanted, because when I last spoke to her at 9:30pm, she just wanted to be admitted.
Hoping she got a good night's sleep, no matter what!
This made me just about blow my lid, so I called the oncologist on call, because in my book Mom is now a cancer patient first and foremost, and with the host of issues she's had going on, I don't think it was at all appropriate for her to be sitting in the ER waiting room for five and a half hours. He called me back immediately and was fantastic. Dr. G knew nothing about my mom's case, but got a brief history for me, seemed surprised that she had been discharged so quickly that morning and without a stent, and called the ER to assess help move things along.
He called me back to report that Mom was going to be admitted for pain management and to flush out her kidneys in hopes of getting her creatinine closer to normal limits. While I was receiving this phone call, Mom was being delivered the same news by the ER attending. All I could think of was when I was wait-listed from every college under the sun and my mom kept saying, "squeaky wheel gets the grease!"
It's 6:30am and I just called the hospital to find out how she did overnight, but apparently she was sent home from the ER! Hopefully that's a good thing and what my Mom wanted, because when I last spoke to her at 9:30pm, she just wanted to be admitted.
Hoping she got a good night's sleep, no matter what!
Sunday, January 6, 2008
Quick Update
Mom is still in the ER, getting IV meds for nausea and pain. They've done another spiral CT which preliminary results has shown fluid retention of the left kidney. So this a good thing that Mom is there. I'm no nephrologist, but my guess thus far is that they will keep her overnight and place a stent this evening or tomorrow morning. Regardless, she made the right decision to go into the ER.
Will let you know more as soon as I do...
Will let you know more as soon as I do...
Back Again
Mom was released mid-morning, and is back in the hospital again as of one hour ago. Her pain and nausea were unrelenting, and despite her being told it is "probably a ureter spasm" by the doctor on call, she went to the ER anyway. The resident really stressed to her last night, the importance of acting quickly when pain occurs, and Mom has really taken that to heart. Paul was also in the "try and stick it out camp," so many thanks to him for just listening to Mom and just taking her in to the ER.
She cannot risk her left kidney in any way, especially if she does end up having chemotherapy, so I supported her decision to head back to the ER. Worse case scenario, it turns out to be a spasm and she is sent back home. Who cares? At least she can sleep knowing that her ureter isn't slowly occluding and putting her at risk for kidney failure.
In cases like these, she'll just have to ere on the side of caution.
She cannot risk her left kidney in any way, especially if she does end up having chemotherapy, so I supported her decision to head back to the ER. Worse case scenario, it turns out to be a spasm and she is sent back home. Who cares? At least she can sleep knowing that her ureter isn't slowly occluding and putting her at risk for kidney failure.
In cases like these, she'll just have to ere on the side of caution.
Excuse Me, Little Buggers
Because there was not just one stone, there were three! And over the course of the night, Mom passed each and every one of them into a little strainer, even the 3mm big boy they saw on the CT scan. Amazing.
Her creatinine is trending down now that the obstruction is being relieved, and they've decided not to undergo stent placement since all the stones are out.
Anyone with a history of a stone should really drink between 2 to 3 litres of water daily, which will be one of the hardest lifestyle modifications for Mom to get on board with. And once we get the pathology reports of the kidney stones, we might be able to better combat them.
Coco finally left at 11:15pm, but wrote me an email telling me all about their visit with the urology resident in the ER. She told my mom to remember three key phrases. These are the phrases that will get her through ER triage fast:
I have no/reduced urine
Every time Mom has left-sided flank pain, she'll most likely have to head to St. Frannie because there is no way of knowing what is causing the pain until a CT scan is done.
She sounded great this morning, psyched to go home considering her creatinine continues to trend downwards, and willing to let us all badger her to drink drink drink!
Her creatinine is trending down now that the obstruction is being relieved, and they've decided not to undergo stent placement since all the stones are out.
Anyone with a history of a stone should really drink between 2 to 3 litres of water daily, which will be one of the hardest lifestyle modifications for Mom to get on board with. And once we get the pathology reports of the kidney stones, we might be able to better combat them.
Coco finally left at 11:15pm, but wrote me an email telling me all about their visit with the urology resident in the ER. She told my mom to remember three key phrases. These are the phrases that will get her through ER triage fast:
I only have one kidney
I have a history of stones
I am in pain
A fourth phrase can be added if/when necessaryI have no/reduced urine
Every time Mom has left-sided flank pain, she'll most likely have to head to St. Frannie because there is no way of knowing what is causing the pain until a CT scan is done.
She sounded great this morning, psyched to go home considering her creatinine continues to trend downwards, and willing to let us all badger her to drink drink drink!
Saturday, January 5, 2008
You Little Bugger
As of now (10:30pm) Mom is still in the ER with Coco by her side. Urine and blood was analyzed and her creatinine came back 2.3 (YIKES, that's HIGH), and a CT scan showed that she has a 2 mm plus sized kidney stone. Painful, nauseating, and obstructing the flow of urine.
She will be admitted on the oncology unit as soon as a bed is available, and tomorrow morning a stent will be re-placed in the left ureter to allow for the flow of urine and get that stone a-movin'.
It's a bit of a relief to know exactly what the source of her discomfort is, but still frustrating to realize that now Lil Lefty has decided to start acting up. Hopefully the stone can be caught and analyzed so that we can better understand the source of the issue. For example, some people who are prone to stones might discover that they are largely made of calcium, and therefor have to abide by a calcium restricted diet. Might not end up being that black and white with Mom, but it's worth straining pee pee to try and find out!
She will be admitted on the oncology unit as soon as a bed is available, and tomorrow morning a stent will be re-placed in the left ureter to allow for the flow of urine and get that stone a-movin'.
It's a bit of a relief to know exactly what the source of her discomfort is, but still frustrating to realize that now Lil Lefty has decided to start acting up. Hopefully the stone can be caught and analyzed so that we can better understand the source of the issue. For example, some people who are prone to stones might discover that they are largely made of calcium, and therefor have to abide by a calcium restricted diet. Might not end up being that black and white with Mom, but it's worth straining pee pee to try and find out!
Hey St. Frannie, Miss Us?
Just as I was crossing the Mass state line on my way home to attend a week long course, Coco called from Avon and said, "your mom's left flank pain is an 8 out of 10, and she wanted me to call and tell you." When I'd left, she'd been having a little pain and I gave her two tylenol and she went to take a nap. Apparently, in a matter of two hours her symptoms worsened and she was having the difficulty breathing associated with severe pain. So I said call the doctor on call, because I think all three of us knew in our heart of hearts that she'd probably be told to head to the hospital. Again, it's one of those things where we can't take chances since she's only got the one kidney, and she just had the stent removed from her ureter on Wednesday, so I wonder if her ureter is occluding again.
So Coco and Mom are in the ER now being well taken care of. She's going to have a CT scan done to check on the kidney, and her pain is already coming down (it was a 7 out of 10 when I talked to her).
Part of me wanted to do a U-Turn on the Mass Pike, but then I realized that every time something goes wrong, I won't always be there, and Coco is more than capable of advocating and supporting Mom. Especially seeing as she's already kicked cancer's booty herself, and is no stranger to symptoms, chemo, hospitals, etc.
I saw Didi briefly when I returned to Boston. She's been in NH with her son, his wife, and their little bambinos, and they spent the day in the city. She is ready to report to duty the second she is called back in to action. I hope she's been able to rest and relax, because I think we might just need her sooner than we expected (like...tomorrow?) because Coco has to head back to Mass tomorrow.
So the A-Team continues to dominate, and Mom continues to show unimaginable strength despite these little speed-bumps.
As soon as I hear anything, I'll post!
So Coco and Mom are in the ER now being well taken care of. She's going to have a CT scan done to check on the kidney, and her pain is already coming down (it was a 7 out of 10 when I talked to her).
Part of me wanted to do a U-Turn on the Mass Pike, but then I realized that every time something goes wrong, I won't always be there, and Coco is more than capable of advocating and supporting Mom. Especially seeing as she's already kicked cancer's booty herself, and is no stranger to symptoms, chemo, hospitals, etc.
I saw Didi briefly when I returned to Boston. She's been in NH with her son, his wife, and their little bambinos, and they spent the day in the city. She is ready to report to duty the second she is called back in to action. I hope she's been able to rest and relax, because I think we might just need her sooner than we expected (like...tomorrow?) because Coco has to head back to Mass tomorrow.
So the A-Team continues to dominate, and Mom continues to show unimaginable strength despite these little speed-bumps.
As soon as I hear anything, I'll post!
Friday, January 4, 2008
Weighing Risks vs. Benefits
Our appointment with the oncologist was very different than we'd expected. Mentally prepared to begin chemo, we were just waiting to get a start date, but the doctor has put off the decision for another two weeks.
The first reason being that Mom's recovery has been much more complicated than anyone expected. She wasn't expected to "bounce back," but at four weeks out they didn't foresee her having gone through all she has. She needs to be at her strongest starting chemo, and she's even admitted that her legs have gotten noticeably weaker in the past month, not to mention the persistent diarrhea, random nausea, lack of appetite, weight loss, and insomnia.
The second reason is that the chemotherapeutic drug they feel would be most beneficial to Mom is very nephrotoxic (mean to the kidneys), and seeing as she only has one, we need to take extra special care of "Lil' Lefty." If that kidney were to fail, it would mean undergoing dialysis indefinitely, unless the damage could be undone or she could be transplanted with a donor kidney.
For all intensive purposes, her borders were clean of cancer cells when the tissue was examined by a pathologist under the microscope, and so administering chemo would be prophylactic, or extra insurance. However the cancer they did find was highly aggressive and has the potential to metastasize, or spread to other parts of the body.
So the massive question at hand is whether to subject Mom and Lil Lefty to chemo without having scientific evidence of remaining cancer cells, when Lil Lefty has already had her fair share of issues, or to watch, wait, and play defensively.
To watch and wait would mean Mom would undergo CT scans at least every three months to check for tumor growth, and have her labs and symptoms monitored very closely.
There is no right answer. If she had two kidneys, chemo would be a no-brainer, but considering she only has one, and there is no active cancer that they can see right now, it's a hard decision to make.
Dr. D. communicated with her colleagues at Sloan-Kettering in NYC, and since very few studies have been done in cases such as Mom's, they feel postponing the decision for another two weeks would be wise as well.
As of today, her stool sample is negative for c.diff, although we'll need at least two more to really be sure. Her diarrhea comes and goes from day to day, and she has to take a pill for nausea about once daily (although needed none today). Her creatinine (which measures kidney function) is high (1.5, and the normal high is 1.2), which could indicate the the Lil Lefty is still a tad stressed, or that she's simply dehydrated. The good news is that she's had no left-sided flank pain, which is a bonus.
The other issue at play (cause why not make things super complicated) is that her blood pressure was 170/100 today. Considering our kidneys regulate fluid volume and your blood pressure, well then we need to get that blood pressure down, keep Lil Lefty from working over-time, and make sure she's below 130/80 before anything happens, especially chemo.
Our spirits were clearly down when we left Dr. D's, but we talked our way through it. The plan for now is to eat plenty of nutritious foods, suck down massive quantities of water, take several walks daily and go up and down the stairs three times a day, PRAY that the new Ambien gives Mom a good night's sleep, re-start some old BP meds she was on before surgery, keep a daily log of BP readings, and get rested and strong.
Regardless of whether chemo is in our future or not, Mom needs to be in her best health ever. As Coco said to me once, "flies can't live in a dirty kitchen," so cancer is less likely to come back if Mom keeps healthy and strong.
We are going to communicate with Dana Farber Cancer Institute (DFCI) in Boston because we'd been seen there a few times before, and Dr. D completely agreed that educating ourselves by speaking with a few experts will provide us with the most complete picture.
A week from today we'll bring in more lovely samples to the cancer center, and then the following Tuesday we have another appointment with Dr. D to re-assess how Mom's doing and revisit our options.
Our day ended on a good note, after a delicious Salmon dinner accompanied by my brilliant-chef-Uncle Eric's healthy rice mixture and my grandfather's famous steamed-to-death-veggie-mush, we had some good laughs watching Little Miss Sunshine. Mom's now under her new electric blanket (thank you Susan, HH guru), happily awaiting the Ambien to kick in.
Needless to say it has been a long, emotional day, but tomorrow will be new and filled with fresh perspective renewed cancer-fighting energy!
The first reason being that Mom's recovery has been much more complicated than anyone expected. She wasn't expected to "bounce back," but at four weeks out they didn't foresee her having gone through all she has. She needs to be at her strongest starting chemo, and she's even admitted that her legs have gotten noticeably weaker in the past month, not to mention the persistent diarrhea, random nausea, lack of appetite, weight loss, and insomnia.
The second reason is that the chemotherapeutic drug they feel would be most beneficial to Mom is very nephrotoxic (mean to the kidneys), and seeing as she only has one, we need to take extra special care of "Lil' Lefty." If that kidney were to fail, it would mean undergoing dialysis indefinitely, unless the damage could be undone or she could be transplanted with a donor kidney.
For all intensive purposes, her borders were clean of cancer cells when the tissue was examined by a pathologist under the microscope, and so administering chemo would be prophylactic, or extra insurance. However the cancer they did find was highly aggressive and has the potential to metastasize, or spread to other parts of the body.
So the massive question at hand is whether to subject Mom and Lil Lefty to chemo without having scientific evidence of remaining cancer cells, when Lil Lefty has already had her fair share of issues, or to watch, wait, and play defensively.
To watch and wait would mean Mom would undergo CT scans at least every three months to check for tumor growth, and have her labs and symptoms monitored very closely.
There is no right answer. If she had two kidneys, chemo would be a no-brainer, but considering she only has one, and there is no active cancer that they can see right now, it's a hard decision to make.
Dr. D. communicated with her colleagues at Sloan-Kettering in NYC, and since very few studies have been done in cases such as Mom's, they feel postponing the decision for another two weeks would be wise as well.
As of today, her stool sample is negative for c.diff, although we'll need at least two more to really be sure. Her diarrhea comes and goes from day to day, and she has to take a pill for nausea about once daily (although needed none today). Her creatinine (which measures kidney function) is high (1.5, and the normal high is 1.2), which could indicate the the Lil Lefty is still a tad stressed, or that she's simply dehydrated. The good news is that she's had no left-sided flank pain, which is a bonus.
The other issue at play (cause why not make things super complicated) is that her blood pressure was 170/100 today. Considering our kidneys regulate fluid volume and your blood pressure, well then we need to get that blood pressure down, keep Lil Lefty from working over-time, and make sure she's below 130/80 before anything happens, especially chemo.
Our spirits were clearly down when we left Dr. D's, but we talked our way through it. The plan for now is to eat plenty of nutritious foods, suck down massive quantities of water, take several walks daily and go up and down the stairs three times a day, PRAY that the new Ambien gives Mom a good night's sleep, re-start some old BP meds she was on before surgery, keep a daily log of BP readings, and get rested and strong.
Regardless of whether chemo is in our future or not, Mom needs to be in her best health ever. As Coco said to me once, "flies can't live in a dirty kitchen," so cancer is less likely to come back if Mom keeps healthy and strong.
We are going to communicate with Dana Farber Cancer Institute (DFCI) in Boston because we'd been seen there a few times before, and Dr. D completely agreed that educating ourselves by speaking with a few experts will provide us with the most complete picture.
A week from today we'll bring in more lovely samples to the cancer center, and then the following Tuesday we have another appointment with Dr. D to re-assess how Mom's doing and revisit our options.
Our day ended on a good note, after a delicious Salmon dinner accompanied by my brilliant-chef-Uncle Eric's healthy rice mixture and my grandfather's famous steamed-to-death-veggie-mush, we had some good laughs watching Little Miss Sunshine. Mom's now under her new electric blanket (thank you Susan, HH guru), happily awaiting the Ambien to kick in.
Needless to say it has been a long, emotional day, but tomorrow will be new and filled with fresh perspective renewed cancer-fighting energy!
Why Don't You Just Soak it in Oxymoron?
That was mom's solution to a stained cousin's shirt Coco was attacking this morning. Got a good laugh, as clearly she meant to say "oxyclean." Then she couldn't remember what oxymoron meant, so Coco and I used the analagies "business ethics" (except for my mom and Papa) and "mean nurse" (except Howard).
This is what happens after five nights without sleep. Getting a prescription for a sleep aid is number one on our list of to-do's with the oncologist this afternoon.
Otherwise, she's up, made some phone calls, did her hair, and now we're sitting around the dining room table enjoying smoothies. Ahhh...unemployment.
This is what happens after five nights without sleep. Getting a prescription for a sleep aid is number one on our list of to-do's with the oncologist this afternoon.
Otherwise, she's up, made some phone calls, did her hair, and now we're sitting around the dining room table enjoying smoothies. Ahhh...unemployment.
Thursday, January 3, 2008
Friends Make the World Go Around
I woke up this morning so excited to head to Connecticut and see my mom, I almost forgot that one of my dearest friends was heading to the salon to chop off 10 inches of her thick, beautiful, hair to donate to locks of love. I sent her a good luck message and was on my way, only to read her blog this evening (she's an incredibly talented designer/decorator/planner) and discover that she dedicated the donation to none other than our very own, Super Mamasan! Erin's probably met my mother once, but she did it to support me and my family. It's days like these that make me know I can get through this. And Erin's not the only one! One of Mom's co-workers' daughter, Mollie, also donated her hair to locks of love in honor of my mom. Any woman with long hair knows what a scary thing it is to chop it all off, so these acts of kindness impact us in ways I can't even put in to words.
It was wonderful to be able to see Mom with my own two eyes today. She's noticeably thinner (if only we could each harness a little bit of cancer right after the holidays), but is eating more each day. I was so happy to see her eat both a good sized lunch and dinner, and keep it down! She had some nice visits today from Eric & Kip (bro-in-law and nephew), Marilyn and Marissa (best friend and already-accepted-to-law-school-in-her-senior-year-of-college-daughter), and Tom V., a good family friend who delivered a delicious bottle of red wine. Enough said.
Tomorrow we have many appointments to run around to, which will hopefully give us a better idea of what exactly we're getting ourselves in to, and when we're getting in to it.
This month between surgery and the commencement of chemo has been a positive thing, especially because it enabled us to become a bit more emotionally prepared. I remember the week after Mom's surgery when we were headed to meet the oncologist, and she absolutely did not want to go. She didn't want to talk about cancer or chemo- she just wasn't ready. But we survived that meeting, just as we've survived the ones since, and now it's like-
bring it, chemo.
Tomorrow we have many appointments to run around to, which will hopefully give us a better idea of what exactly we're getting ourselves in to, and when we're getting in to it.
This month between surgery and the commencement of chemo has been a positive thing, especially because it enabled us to become a bit more emotionally prepared. I remember the week after Mom's surgery when we were headed to meet the oncologist, and she absolutely did not want to go. She didn't want to talk about cancer or chemo- she just wasn't ready. But we survived that meeting, just as we've survived the ones since, and now it's like-
bring it, chemo.
Father Daughter Manis & Pedis?
Who says cancer doesn't bring out the best in us? Yesterday my mom and her father (along with Didi and Coco) had a group spa day and got manicures and pedicures. Being an old Frenchman, it was far from his first manicure, but the first pedicure in his 81 years. Impressive. In case it's been a while (or never) since any of you have been to the nail salon, here's a little reminder of what it's like (courtesy of Coco).
It was a long day for Mom, but she sounded happy to get out of the house for a few hours. She had an appointment with Dr. K who removed the stent from her left ureter, which she was surprised to learn was about a foot long! He was able to do the procedure right in the office with a little scope while Mom was awake, which she described as not exactly the most pleasant thing ever, but not the most painful either. We'll see how the left kidney does without the stent, and hopefully it won't need to be replaced.
She also went to the cancer center to have labs drawn, and to drop off a plethora of samples. When we meet with Dr. D tomorrow, we should get all the results back.
I should be home in time for a big family lunch, and can't WAIT to see my Mom. Talking on the phone just isn't the same. Maybe we'll even get to opening our Christmas presents.
While I'm home, we're going to organize her medical papers that are stacking up rapidly, and go through the fridge to clean out old left-overs and make room for lots of fresh, healthy goodies.
It was a long day for Mom, but she sounded happy to get out of the house for a few hours. She had an appointment with Dr. K who removed the stent from her left ureter, which she was surprised to learn was about a foot long! He was able to do the procedure right in the office with a little scope while Mom was awake, which she described as not exactly the most pleasant thing ever, but not the most painful either. We'll see how the left kidney does without the stent, and hopefully it won't need to be replaced.
She also went to the cancer center to have labs drawn, and to drop off a plethora of samples. When we meet with Dr. D tomorrow, we should get all the results back.
I should be home in time for a big family lunch, and can't WAIT to see my Mom. Talking on the phone just isn't the same. Maybe we'll even get to opening our Christmas presents.
While I'm home, we're going to organize her medical papers that are stacking up rapidly, and go through the fridge to clean out old left-overs and make room for lots of fresh, healthy goodies.
Tuesday, January 1, 2008
Come on 2008, Don't Let Us Down
While up in Vermont, I spoke with Mom at least once daily, and she seemed to suffer from a sleepless weekend, and some new flu-like symptoms as of this morning. She had a little excursion out of the house on New Year's Eve and is worried that perhaps she picked something up, but my guess is that with so many people going in and out of the house, we have no way of knowing what little buggies could have made their way home. She's been running a very mild temperature (99.1), so just to be sure she'll head to the cancer center to meet with Judy tomorrow at 11am. She'll have a stool sample, 24 hour urine collection, and hopefully a nice juicy vein with her so they can do a thorough work up. I'm concerned that this might be a colitis flare up, since the symptoms seem to be similar, so hopefully we will have more answers in a few days.
Vermont was wonderful, but Mom was missed! When I spoke with her Saturday, she was in particularly good spirits, and couldn't say enough about how loved she continues to feel each and every day. She asked me to recognize Tante Didi in particular, who has been at her beck and call, without break, for weeks now. Not until you have the opportunity to care for someone who is battling an illness, can you truly understand the emotional and physical implications. Not only has Didi been taking care of my Mom, but she has managed laundry, meals, tidying, and driving for everyone else in the house as well- above and beyond the call of duty!
Friday we have an appointment with the oncologist, who will give us a better idea of when chemo will start and exactly what it will entail. I assume it will be put off until she is feeling better and eating more, but a huge part of that decision will be based on her team's expertise.
I must admit, despite our snowy drive that took us twice as long as it should have, I have extra pep in my step today. It's day one of a new year, and I have a good feeling about 2008.
Vermont was wonderful, but Mom was missed! When I spoke with her Saturday, she was in particularly good spirits, and couldn't say enough about how loved she continues to feel each and every day. She asked me to recognize Tante Didi in particular, who has been at her beck and call, without break, for weeks now. Not until you have the opportunity to care for someone who is battling an illness, can you truly understand the emotional and physical implications. Not only has Didi been taking care of my Mom, but she has managed laundry, meals, tidying, and driving for everyone else in the house as well- above and beyond the call of duty!
Friday we have an appointment with the oncologist, who will give us a better idea of when chemo will start and exactly what it will entail. I assume it will be put off until she is feeling better and eating more, but a huge part of that decision will be based on her team's expertise.
I must admit, despite our snowy drive that took us twice as long as it should have, I have extra pep in my step today. It's day one of a new year, and I have a good feeling about 2008.
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