Friday, November 26, 2010

Eight already

My darling Rebecca,

Eight years ago today you entered our world, and changed it, for the absolute better.  I'm still wrapping my head around you being eight years old.  I can still vividly remember sitting in my hospital room on our first Thanksgiving, when you were two days old.  As I sat there, I calculated when your birthday would actually fall on Thanksgiving, and figured that it would happen on your seventh birthday.  I couldn't conceive of this tiny baby that was you, ever being seven.  And now that is a year ago!

Your birthday celebrations were quite fun.  Like we did for your sister, we had your family party at the cabin at one of our local parks.  This time it didn't rain, so you and your cousins were able to play at the nearby playground.  The next day, you got to have a 'friends party'; we hadn't done one of those in a few years.  This year was a good time to have one, since there are a lot of girls in your class at school this year who you didn't know from first grade, and I hoped a party would help you all to get to know one another better.  You chose to have the party at a local paint-your-own-pottery place, and everyone had a blast.  Your friends each painted an animal figure from a few choices you had pre-selected - an elephant, a giraffe, and a ladybug.  As the birthday girl, I let you pick a larger figure for yourself, and you picked an angelfish, which you worked very hard on.  For refreshments, we served cupcakes, which you and I made that morning.   We'll be able to pick up your birthday item tomorrow; I can't wait to see how your fish came out.  Last year you attended a birthday party at this same place, and while there, you painted a small fish figurine for me, as a welcome home gift since I had just returned from Columbus and my final week of IL-2 treatments.  Your aunt Sherry took you to the party so that I could stay home and Daddy could deal with Carly, and she paid for the fish so that you could give it to me.  It is beautiful and has pride of place on top of our china cabinet.

Today we went back to paint more pottery, since we'd had such a good time, we wanted to make some Christmas ornaments, and they were offering half off on studio time for Black Friday.  Aunt Sherry came with us, along with Aunt Barbie and your cousin Marty.  We had a great time making lots of items... some of which have to remain secrets for now as they are going to be gifts later. It was a fun way to spend part of your birthday.

Second grade has been a change from first grade for you, but you've adapted very well.  Your teacher this year started out the year with a stricter attitude than your teachers last year showed, but as the year has gone one, and as I predicted, you've gotten to know one another better and so you are enjoying being in her class.  At your recent parent-teacher conference, she gave you glowing reviews, telling us that she had nothing bad to say about you, and that she wished all her students were like you.  She told us about the work you're doing and gave us examples of how well you're working in class.  One neat example was about you wanting to search online for recycle facts during recycling week.  You didn't know how to spell the word 'recycle' to enter it in the search bar.  One of your classmates was laughing about that, but you thought about how you could find out the spelling without asking your teacher.  You remembered that the word was written on the side of the recycle box in the classroom, so you went over to the box to memorize the spelling.  Your teacher was impressed with your resourcefulness; so were Daddy and me.  We are constantly amazed... well not really amazed, knowing you as we do, but impressed by the way your mind works.  You are a big note writer, and your notes are well written.  You use notes to start conversations with us sometimes, and it's a great idea.  You adore reading and have really started to embrace chapter books.  As a lover of reading myself, I am thrilled to see you loving books so much.

Dance is still a passion of yours.  For a while you preferred your jazz class to your ballet, but now you seem to love them both equally.  I got to watch your whole ballet class this week, something I don't normally get to do given my work schedule.  You are focused and you remember a lot.  It was great fun to see how much you've learned and how well you apply it.  You'd like to try tap dancing as well, but it's not been easy to fit into our schedule so far.

You branched out into some team sports this year too.  During the summer you played softball for the first time, and really enjoyed it.  You are a good fielder and a better hitter.  We all enjoyed going to your games.  Then this fall you tried soccer and found that you really like it.  Even though some of the girls have played in prior seasons, you got up to speed quickly.  At your practices I could see again your focus and your desire to "get it right" when practicing different moves.  During the season you found your niche playing defense, and prevented many points from being scored against your team.  Your coaches had lots of praise for you, and Daddy and I were really proud to watch you play.  One Saturday your league had a 3 on 3 tournament.  Your teammates were girls you didn't know, but you did fine with them.  At one point two moms I didn't know were standing behind me talking about a really good player on the field.  I realized that they were talking about you!  That made me feel extra proud since they didn't know you, didn't know me, and so were merely noting your skills.  You are excited to continue soccer in the spring, and so I am happy to go be a soccer mom while you play.

This fall you got your first pair of glasses, as we discovered that you are a bit nearsighted.  You've adjusted to them very well.  I told you that I was envious that you had such cool choices of frames; when I got glasses for the first time at age eight, the choices were all ugly!  You can see so much better now, especially when reading, and so I am glad that you have the glasses.

You are truly a light in my life, Rebecca; I am so happy and proud to be your mom.  Tomorrow I will post some photos of you.  :-)

Friday, November 19, 2010

Where to begin...

... when you've been avoiding writing?  Admittedly, my days have been so full, and my thyroid tanked (again) so I was pretty fatigued until my medication was adjusted (again).  But more than that, I think I've just felt at a loss for words at times, and too full of them at others.  A few of you have kindly reminded me that I haven't posted in a while, and knowing that you care makes me feel all warm and fuzzy... even while I'm apologizing for not keeping up to date here.

I'll begin with good news.  I finished my second cycle of Sutent at the beginning of November, and had scans two weeks ago.  Chest CT, abdominal and pelvic MRI, blood work and a doctor visit all in one day.  Amazing how tiring that was... of course I was still hypothyroid at that point but didn't know it.  My appointment with Dr. Rini was at 1PM.  Unfortunately, at that point he had results of my CT (clear, still, excellent) but the MRI results had not come in yet.  Since I'd taken the day off from work, I had no problem waiting, so I sat in the exam room reading and playing on my DS.  He checked in once, then Shari, his NP, checked in once, both offering me the option to stay or go.  At about 2:30 I thought, maybe I will just go, but then a few minutes later the door opened to a smiling Dr. Rini.  He was smiling because the news was good.  There was shrinkage of all masses in my liver, shrinkage of the mass in my pelvis, and two masses in my right kidney, which I hadn't realized were there, disappeared.  So, the Sutent is definitely doing its job.  The plan is for for me to go through two more cycles, and be scanned again around late January.  As long as the Sutent is still doing well, and I am still tolerating it, we'll then go three cycles before scanning again.  It was wonderful news that was well worth waiting for.

The side effects of the Sutent are not fun, but I am soldiering through.  This time my mouth sensitivity was pretty pronounced, and at the end of the cycle I had a bump in the middle of my tongue toward the back that was super annoying.  I am very sensitive to temperature and seasoning while on the drug... one night we were eating meatloaf for dinner and I thought, crap, I put in too much of the seasoning I normally use.  However, I noticed that Jim and the girls were all eating without complaint... the girls would definitely speak up, and loudly, if the meatloaf was "too spicy".  I asked Jim, "is the meatloaf too seasoned, or is it me?"  It was me.  One day I went down to the cafeteria at work with a couple of my team mates.  We were wondering what one of the soups was like, so two of us tried a spoonful.  I immediately burned my tongue, and had a red spot on it for the rest of the day.  That will teach me... and the soup was not all that great anyhow.  Probably a good thing, because if I'd bought it, I wouldn't have been able to enjoy it anyhow.

You'd think that with such tongue and taste problems, that I'd be withering away due to some amazing weight loss, right?  Not so much... I realized late in the cycle that I was eating even when it wasn't comfortable to my mouth, trying to soothe my feelings, I think.  Now that I am on this targeted therapy, I am definitely more aware of the potential for this cancer to not just go away, to not just be able to be cut out of me as it's done in the past.  I am getting back on top of things lately, so hopefully I can overcome that bit of panic and not sabotage my health further.

These feelings of terror/sadness/mortality have been heightened by the recent deaths of a few people in the kidney cancer community.  The passing of my friend Angelo was the most upsetting, as he and I shared the bond of being parents to young children.  When I first started investigating treatments for metastatic renal cell, I happened across Angelo's blog.  At that point he was undergoing HDIL-2, and I read his story with great interest.  The IL-2 did not work for him, but he was able to get into a clinical trial that did wonders for his mets.  Unfortunately he had brain metastases, and while they were able to be treated, swelling in his brain causes seizures, and the steroids used to treat it suppressed his immune system.  He had so much optimism about beating his cancer, and the next thing anyone knew, he was gone.  It really shook me to learn of his death.  We'd never met, we'd never spoken on the phone, but his death hit me like he was someone I saw daily.  

Angelo's story also brought back memories of my friend Deb, who was another victim of brain mets, in her case, from breast cancer.  The first anniversary of her death is coming up in a few weeks, and I still miss her a lot.  I keep in touch with her husband and her daughter, which has been wonderful.  I can only imagine how hard this last year has been for them.  She still guides and mentors me; while I don't consciously think "what would Deb do?", I notice that I've internalized advice that she offered over the years.  She was also the most optimistic cancer fighter I have ever met.  I feel that she's up in Heaven keeping an eye on me and telling me to keep fighting. 

Lots more to spill, but I need to get up from this keyboard or I will never get my day started.   This weekend will be cra-zee... Rebecca's family birthday party is tomorrow, and we're having a party for her school friends on Sunday.  Hello fun, goodbye weekend!  So, the rest of my random thoughts will have to wait before they can be revealed... I'm sure you're on the edge of your seat, no?

Sunday, November 14, 2010

A good read

Chris is a fellow member of the kidney cancer online community, and a fellow member of Club HDIL-2.  This article which he wrote for Arkansas Life is both hysterical and informative, so check it out:

http://app-hosting.net/ackc/Fat_Man_of_Cancer.pdf

And yes, Minnie, I promise an update of my own soon... it's been too long!

Thursday, October 14, 2010

Thank you and quick update

I want to publicly thank my coworker or coworkers who recently donated unused Paid Time Off hours to me.  I recently received a nice check that was very much appreciated and will be put to good use.  The pundits who say the economic recovery in the US is here don't live near us, that is for sure.  Jim is still looking for a job and the pickings are very slim.   Bleah.  If something doesn't give soon, Carly will have to leave her preschool.  That would be a shame because she is doing so well in her new class, and really enjoys it there.  We will see...

I'm a week into my second cycle of Sutent.  So far, so good... my tongue has an interesting line of demarcation on it; from the line to the tip it's more sensitive and the surface is bumpier.  It's sensitive to heat and spice, as it was last cycle; I'm just waiting to see if it gets more pronounced as the level of drug builds up in my system.  My digestive system is also a bit wonky again, but fortunately so far nothing major.  This afternoon I was looking in the mirror in the restroom at work and noticed that my eyebrows look very white.  The light in the lavatory is horrible so I wasn't sure I could trust what I saw.  So, I marched into my coworker Patty's cubicle and asked her what she thought.  She confirmed the whiteness... I'm not a makeup girl most of the time but I might start back up now...

I think I have more to say, but I've been interrupted a number of times already, so I'll have to try to regroup later.  Ta ta...

Saturday, October 09, 2010

Out of the mouths of babes

So tonight I was feeding my addiction playing a few games of Bejeweled Blitz on Facebook.  At the beginning of each game, a voice says, "One minute.  GO."  I responded to the voice, saying "Don't tell me what to do, guy."  Carly was sitting by me looking at a book and heard the exchange.  She piped up with, "yeah, you can't tell her what to do.  She's the boss here."

Wow... she actually admitted it!  Yeah me!

Of course she then amended that statement to say "Mommy and *I* are the bosses here."  Not so much, but funny anyhow.

The best was the other day... First the quote from Rebecca:

"You know, it's not all about you on top of her."

Before you start wondering what kind of house we're running here, I will explain.  Bailey, our older, larger, male dog, wants very much to be the alpha dog in our house.  Unfortunately for him our other dog, Trixie, was a breeding dog in a puppy mill for about five years before she was rescued.  Because of this, she doesn't really know how to be a dog most of the time.  This even extends to pack rules.  For example, if Bailey is eating or drinking from the communal bowls and and she wants to eat or drink, she will just come up to the bowls, and slide in under his head.  He doesn't contest her movements, instead like a gentleman he lets her in, but it bothers him.  Also, when they receive treats, he will usually bite his in half and eat the pieces that way.  Trixie has been known to run up and take the half treat that is on the floor, having already gobbled her treat.  Poor Bay is left standing there kind of stunned.

But he tries to be dominant, by mounting her at various times throughout the day, especially in the kitchen.  Rebecca was getting something in the kitchen and found her path blocked by Bailey and his attempt to attain alpha status.  Her comment was not heeded by Bailey, but Jim and I fell over ourselves laughing.

Never a dull moment around here.

Wednesday, October 06, 2010

My baby girl is five

Dear Carly, today we celebrated your fifth birthday.  On this day five years ago you joined our family and made it complete.  Everyone was so happy and excited to meet you, especially your big sister.


Looking at your ever growing self, it's hard for me to remember that I could rest you on my chest, like I did at the hospital, gazing at your thick head of hair and your tiny features.


There's no way you would sit still like this today!


After a few days, we were all home together, where I could enjoy being with my three favorite people.



It's been a joy watching you grow up from that tiny baby.   At age two your baby face was still evident, even though you considered yourself quite the big girl.


You went through your 'terrible twos' as a very defiant, very loud, very  stubborn little girl.  Daddy hoped that once you were three you would revert to the sweetness of your babyhood.  A full tantrum you threw on the morning of your third birthday disabused him of that notion immediately.  However, you could also be quite sweet and loving, then as now.


By age four you had developed a swagger, along with an extensive vocabulary and immense observation skills.  Nothing escapes your notice!  


This year, it was hard for you to say goodbye to the friends who left for kindergarten.  Your October birthday makes you a bit too young to join them this year.  Luckily, you've made many friends in your new class, Pre-K 2, and you love your teacher, Ms. Tiffany.   You told Ms. Tiffany all about how Rebecca has homework to do every night, and how you wished you did too, so she sent home some papers for you to work on at home.  You started playing soccer this year, on a team called the Greyhounds, and you have been having so much fun there. 



Carly, you are a girl of many interests.  Along with soccer, you are learning ballet, and at school you have the opportunity to do gymnastics and karate. The gymnastics in particular is a natural for you and your high energy level.  I love that you have all of these opportunities to try so many fun activities.  At home, you like making art and playing with your dolls and toys, especially your mini veterinarian office, where you and Rebecca spend many hours together treating your stuffed animals.  You've gotten good at using the mouse on the computer and so computer games and activities have become a lot of fun for you.  At Webkinz you have a dog named Hugger who has the most elaborate rooms I have ever seen, all decorated by you using your imagination.  Sometimes you and I play some of your Webkinz games together, because (shh, don't tell anyone) I think some of those games are a lot of fun too!

Finally you're starting to slow down some, in terms of your need to be a blur of motion and sound.  You and I have spent some wonderful evenings cuddled together reading, watching TV or just talking. You have matured enough to understand that you need to be gentle with Trixie, our skittish rescue dog, and so now instead of hiding from you, she welcomes your gentle petting and the "relly bubs" you give her.

My sweet  Caroline, I love you with my whole heart, and I look forward to sharing with you all the adventures of being five years old.

Love,

Mama

Sunday, September 26, 2010

Calling Dr. Rebecca

This afternoon the girls were playing with the Barbie(tm) vet station that Carly got for Christmas last year.  (And yes, it is bright Barbie(tm) pink).  Rebecca created a medical chart for one of her patients, a stuffed animal named Sprinkles:



In case you can't read it:

P's name (patient's name) Sprinkles  (note the fancy lowercase k - a second grade handwriting convention)

Pane: apparently bad, as she drew the Wong Baker faces pain scale and circled the second to last one

Sicknis: brokein leg

Doc's name Rebecca Monahan (looks like she attempted a cursive signature)

Anamil: cow (Sprinkles is actually a hippo but I'm not telling)

Cards: 24 (I didn't know what this meant.  Rebecca said that is how many get well cards Sprinkles has received.  In all my hospital stays I have never had anyone log my cards!)

Blood presher:  100  (Seems to be missing part of the equation so I'm not sure if that is low or high)

room:  147

cuyer: surgrey  (I didn't know what this was - it is cure: surgery)

Later she and her sister were playing with a Lego set, building houses and cars and such.  She told me that she made a wheelchair for one of her patients, who has cancer.  Wow.  Luckily apparently the cancer only caused him to be in a wheelchair; from what I heard he was pretty active otherwise.

Currently on break

... though it seems like I've been on break from this blog for a while.  I have wanted to write, but in fact have just been too tired.  My energy level picked up immensely once my increased dose of thyroid medication kicked in, but by the end of the day I am just worn out.  Toward the end of this Sutent cycle my digestive problems seemed to ease off, and my mouth sores never bloomed to full sores, which was a relief.  On the other hand, food just doesn't taste quite right while on the medication, my tongue is very sensitive to heat and spice, and water tastes funny.  That last one is bad, because I need to make sure I keep drinking my water.  My last pill of this cycle was Tuesday night, and as of this weekend my mouth felt much better.  We're having Carly's birthday party for the family next weekend, so the timing is perfect in terms of how I feel.  

We celebrated my forth-sixth birthday yesterday.  It started out like the usual Saturday, with running around to soccer games and dance lessons.  Jim and I had to split up this week because the girls' soccer games were at the same time.  I was with Becky and on our way to her dance class, we noticed that a local garden center was having a fall festival, with a number of activities including meeting some adoptable dogs and cats from the Animal Protective League.  We decided we'd stop at the festival after class, and I texted Jim to let him know what we were doing.  He and Carly were off on some birthday errands but joined us afterward.  The weather was cool and breezy but otherwise nice; the girls had fun with activities and games.  We picked out a couple of pumpkins for our front step and also bought some flower bulbs to plant for next spring.  It's been years since I've planted bulbs, and I don't think I have planted any since moving to our current house.  Last fall I wanted to plant some but didn't have the energy after my first two cycles of IL-2.  This year we're doing it though.  I really want to see some color in our yard in the spring.  We got some tulips, hyacinths and windflowers.  It should look nice, as long as the local critters don't dig up my bulbs.  I am not a natural gardener by any stretch but I do want to work on making our yard more beautiful... while at the same time not making a lot of work for myself.  In the spring I hope to pick out some perennials to add to the color-fest.

Another reason I haven't written recently is that I just don't know how to describe my feelings right now.  My last post touched on it, but there's more under the surface that I find hard putting to words.  Part of it is an increased sense of my own mortality, for sure.  Also, I feel that my faith has been shaken by the progression of the cancer.  It's impossible for me to understand how my loving God would be okay with me dying while trying to raise young daughters, children who I wanted for so long and whose lives I thrive on being part of.  Funnily enough, I am going to mass now, where I didn't much during the spring and summer, mainly because Carly has Sunday School during mass which gives me the push to go.  While I am there, I talk to God and ask him to please let me have more time with my family, so that I can be with them and they don't have to function without me.  I know many people can rationalize all of this, but I'm having a hard time with it right now.

I also ask God to help Jim in his job search.  There has just been so little out there to even apply for.  He did get a call based on a resume he'd sent out a while back, and had a terrific phone interview.  They had him come in the next day for an in-person interview and he could tell it wasn't going to work out, based on the questions the second person in the interview asked.  Sure enough, he got a rejection letter this week.  He said that the experience wasn't a loss, since interviews are always good experience, but he's really tired of looking.  And it seems that everyone wants some experience or certification that he just hasn't gotten, or gotten to.  Very depressing.  He'd like to do something else that he would enjoy, and I'm all for that, regardless of what the salary level would be.  Unfortunately, neither of us knows what that would be.

Monday, September 13, 2010

Kid speak - 09/10/10 edition

Last Friday I tried to call home a few times while on my way there from work, but the line was busy.  When I arrived at home, Jim told me that nobody had been on the phone, and sure enough, when he tried to call the house phone from his cell, he got a busy signal.  We have two corded phones in our house.  One is in my office and gets knocked off the hook every so often.  Rebecca went upstairs to check it but it wasn't the culprit.  There is another corded phone in the 'toy room' where the girls keep their playthings.  Carly disappeared down the hallway as Jim and I talked.  I called out to Rebecca to go check the toy room phone.  Carly could hear my request, because she called back to me, "I'm already on it!"

She'll be five next month.  Five.  Did you know the meaning of the phrase "I'm already on it" at that age?

Taking it day by day

Going back to work and starting drug therapy... it's an exhausting combination.  Combine that with the beginning of a new school year and new fall activities schedule and it becomes a merry go round spinning ever faster.  Not really a fun place to be, especially when said drug therapy's side effects include nausea.

I'm in the second half of my first cycle of Sutent; 9 pills to go and I get a 14 day reprieve.  The first couple of days were fine, since it was just starting to build up in my system.  And while I haven't experienced anything debilitating, I have definitely had effects.  My tongue started to develop sores after the first week, causing me to call for a prescription for Magic Mouthwash, my old nemesis of IL-2 days.  I HATE HATE HATE that stuff, but I know that it helps, so I have been using it, though not as frequently as I should.  Fortunately the sores never became full-blown, but my tongue is definitely sensitive.  Hot foods or remotely spicy ones hurt.  I have an odd taste in my mouth as well, not exactly metallic, but different.  I notice it most when drinking water.

My digestive system is in a bit of an uproar because of the drug too.  I had one bout of diarrhea early on, and took something for it, on the advice of my nurse practitioner; luckily it didn't return.  Instead I have gas that often feels like it is trapped deep inside me, painfully so at times.  It sits low in my abdomen, causing a sensation not unlike menstrual cramps.  This is a particularly unfair situation, since the loss of my ovaries was supposed to exempt me from such feelings!  And as the time on Sutent passes, I have felt increasing fatigue.  I had bloodwork drawn last week and discovered the reason for my fatigue was that my thyroid is moving ever more hypo-... a common side effect.  I had my T4 level drawn the day I started treatment; the reading was 4.54, with the normal range being between 0.4 and 5.5uU/mL.  My reading on September 8 was 12.46.  Wow.  No wonder I've been feeling like I am dragging myself around.  Hopefully a few days on the higher dose of thyroid medication will put me back to feeling pretty good.

I try not to comment too much at home about how I'm feeling from Sutent so as not to keep the girls' focus on it.  Both had transition at the end of August; Rebecca started second grade and Carly moved to a new room at preschool.  They restarted dance classes this week and both are playing rec league soccer this season.  Next to add is PSR classes starting next week.  So much to do; Jim does a lot of the running around but I am the schedule tracker so I need to make sure we're all aware of who needs to be where, when, and with what
"stuff".  In private moments, I do comment on/complain a bit to Jim about side effects I'm experiencing.  He's good about listening to me  and I know that's what he's there for, but I also sense his increased worry about me.  This is the first time I'm really "feeling" like a cancer patient.  Obviously I felt pretty crappy during and directly after my IL-2 treatments, but we knew those side effects wouldn't last, and that I would feel better the farther from the treatments I got.  This is different.  I'm on this drug for the foreseeable future; until either it stops working or I can't tolerate side effects from it, in which case I would be put on a different drug.  I think that the reality of my situation has hit me in a new way.  Despite all of my surgeries, and my IL-2 treatment, a part of me has been in denial that I actually have this disease.  I think that I've been hoping all along that I would be "cured" by either a surgery or the IL-2.  And I have never felt like a "sick" person... after having my kidney out, I have never felt unwell due to the cancer.  The side effects of the Sutent have changed that, making me feel like someone who is chronically ill.  I do understand that I am on my first cycle, and that in time, my side effects can decrease.  And I know that while I feel like crap at times, I am still functioning far better than many people I know, even those without cancer.  But sometimes when I'm in the middle of feeling unwell, it's difficult to imagine that I might feel better one of these days.  This is so hard to describe, and I'm not sure I'm doing a very effective job of it right now, but it's been on my mind.

Friday, August 27, 2010

Moving along

It's been a busy week, for someone on medical leave.  On Monday I saw Dr. Drake for my post-surgical follow up.  In his words, "Girl, you heal fast!"  I always seem to from surgery, with one notable exception that was not my body's fault.  He cleared me to start systemic treatment, and told me I was okay to go back to work the next week.  What a wonderful man; very concerned about me, told me that he'd even consulted with the surgeon who performed my nephrectomy in 2005.  At the end of the appointment he gave me a big hug.

Wednesday was Rebecca's first day of second grade.  She was very nervous the night before, to the point of making herself sick, with worries about whether her teacher would be nice or mean, and if she would be able to do second grade work.  Fortunately, she woke up with a much sunnier attitude and was all smiles as she got on the school bus.  I missed seeing her get off the bus in the afternoon (see below) so she called my cell to tell me about her day.  It sounds like her teacher is pretty strict, pretty serious.  I hope that the atmosphere loosens up once the school year is well underway.  Several people have mentioned that this is a good teacher, so maybe she's one of those who isn't as friendly as some teachers, but really gets the kids to learn... the most important thing.  Getting off the bus at home is new for Rebecca; last year she went to the after care program at the same place Carly attends preschool.  We decided that while Jim is still unemployed, Rebecca will just come home directly, saving us that tuition.  Hopefully we can keep Carly enrolled because I think she can really benefit from the program; it will depend on our bills and on how long Jim continues to receive unemployment.  Carly moved to a new classroom this week; she is now officially in Pre-K 2.  It's a smaller class, 12 instead of 25 or so.  Carly started there Wednesday as well, and that morning was very tearful about it.  As we talked about her anxiety, I learned that she was upset because her new class is in the basement at her school.  She was afraid that if they were to have "a real fire drill" (aka an actual fire) that she would not get out of the building in time.  I mentioned this to her teacher, who told me that this was one of the subjects she was planning to discuss and to reassure the students about.  Sure enough, that afternoon Carly was all smiles when she came home, announcing that she LOVES her new class.  Here are both girls on their first day:



On Wednesday afternoon I saw my oncologist Dr. Rini about starting systemic therapy.  Quick lesson for newer readers:  renal cell carcinoma (kidney cancer) doesn't respond to traditional chemotherapies, that is, drugs that work to kill the cancer cells in the body.  For many years, the only treatment was High Dose Interleukin-2, which is extremely toxic and has a low response rate.  In the past several years, a number of drugs have been approved to treat kidney cancer via anti-angiogenesis.  These drugs stop the growth of new blood vessels, thus cutting off the 'food supply' to tumors.  I remember when my dad was being treated for lung cancer in the late 1990s, he read something about the then experimental idea of anti-angiogenesis and was fascinated.  Who knew that more than a decade later, this process would become very important to my life?  Dr. Rini and I had pretty much decided at my last visit that I would try the first and most popular drug, Sutent.  It's a pill that I am to take once a day for 28 days.  I then have 14 days off the medication, then start it again for 28 days.  After two cycles they will re-scan me to see if the drug is helping me.  The scan reports were unclear about exactly what we're looking at; they mentioned possible new mets in my liver, though they were comparing the MRI to a previous CT scan, which means that they were looking at apples and oranges, basically.  The mesentery mass still exists of course, and a left adnexal mass by the uterus was noted as still being there.  I had been under the impression that they were removing that mass in my surgery but I guess not.  There was one sentence on the MRI that scared me, however.  I don't have the exact wording right now; I didn't get a hard copy of the report at the appointment, and so I need to have my results put into my electronic medical record.  At any rate, something indeterminate was noticed at my L-2 vertebra.  It could be nothing, or it could be the start of bone metastases.  I asked Dr. Rini about it and he said that there is really no information about it at this point, so while it's not an area that will be looked at in terms of assessing whether Sutent is halting progression of the cancer, it is something that will be watched in future scans.  

I feel so out-of-control about my situation right now.  How did I end up here?  Statistically I wasn't supposed to have any recurrence once the kidney was removed.  But here I am now.  It baffles me and it scares me more than I want it to, though I will continue to throw everything I can at it.

Thursday was open house at Rebecca's school.  Yes, on the evening of the second day of the year.  What is that all about?  The teacher was polite but had little to say.  She did ask Rebecca if she had told us of her 'big' award that day, which Rebecca had... if a student is behaving particularly well, they get an "Emmy Award" to place on their desk for that morning or afternoon.  Rebecca earned the Emmy that day, which didn't surprise me at all.  As we walked out of the classroom, Jim asked me what people were signing up for on the wall.  Turns out it was the conference schedule; had Jim not noticed it, I would have completely missed it.  The teacher hadn't mentioned it to us.  Luckily since we were there right at the start of open house, we got a desirable slot for us.

Then today Jim and I got a chance to do some real clearing out at home.  He's been working on clearing out the garage, and earlier this week we were able to get two boxes of stuff into the trash.  We found an item of my dad's that my sister had been looking for, so she was able to get that, along with some other items; two more boxes' worth... yeah!  Then Jim's brother's family was having a garage sale this weekend, and my sister in law (SIL) had asked me if I wanted to bring anything to sell along with their stuff.  We have a stroller that nobody in our circle of family or friends needs, that my SIL knew I wanted to get rid of.  I could think of a few other candidates to try to sell too.  So, this morning after the girls went to school Jim and I loaded up the van... along with the stroller were a sump pump (bought new for my dad's house but dissed by the inspector hired by our buyer, so Jim ended up re-installing the old one!), a deep fryer, some various electric decorative items that were never used, and a light therapy box.  I then went into the kids' stuff and got out a riding toy that Carly is too big for, a set of squishy 'tiles' that have cutout alphabet blocks, and some unopened buckets of sand toys.  In the garage Jim found a toddler seat that straps onto a chair, and a plastic easel that he'd pulled out of the trash at some point.  We put the stuff out at the sale and sold over half of it in four hours' time.  In fact, as I walked up the driveway with the first load of stuff, a lady stopped me and bought the package of squishy tiles right there!  We had to leave the sale before it closed for the day, but I think my SIL sold the stroller for us after we left.  There is almost a clear wide path now from the garage door to the back of the garage now... so we're on our way to getting a car back in there... my car, thank-you-very-much. 

The girls have been pestering us for a hamster for the past several weeks.  We had told them that they need to really clean out their bedroom before we would consider it.  Today I discussed it with them and we decided that if they could pick some toys that they could part with, we'd see if those toys would sell at the second day of the garage sale.  Any money we make from the toys will go toward hamster expenses.  It will be interesting to see what they decide thy don't need any longer!

I hope we can keep up this momentum once I get back to work next week.  I like having clear, open spaces in the house and we've had too few of those for too long.  And right now the house is not company-ready at ALL.  I really want to have people over more, to spend as much time as we can with the people we care about.  Maybe as we declutter the house, my body will declutter the cancer.  That would be the ultimate.

Tuesday, August 17, 2010

Sneaky mama

Tonight Carly was very angry with me for not letting her do something she wanted to do at bedtime.  I laid down in bed with her as she fell asleep.  She told me that she doesn't like me.  I understand, I said, but I still like you.

Then, to get more of a response, she said, rather quietly, "I hate you."

"Well, I can't stop you from hating me, but I still love you anyhow.  Even if I were mad at you, I would still love you."

Hm, that didn't work on mama... let's try another tactic:

"I'm not going to sleep here anymore."


"No, sweetie?  Where are you going to go?"

"The woods."

"Oh, okay.  Will you just sleep outside or will you have a tent?"

"A tent"

"Good idea, Carly.  You wouldn't want to get bit by the bugs."  Our windows are open tonight and we can hear all the night sounds.

"Also the thunder, mama."

"Oh true, you'd need a tent to stay out of the rain."

"Or maybe I will live by S (friend from preschool)."

"Ok, will you live in her house or just by her house?"

"In her house.  And I will eat their food if it is okay with her mom.  I wonder if I will like what they have to eat.  Maybe they will not have some things that I like, like lasagna.  They definitely won't have Cinnamon Toast Crunch."

"Yeah, it's hard to know.  I wonder if they have enough beds for you.  Maybe you will need to sleep on the floor in your sleeping bag."

"I will take my sleeping bag."

"Well, I will miss you... I hope you come back and visit sometimes, Carly."

"You can come visit ME, mama."

"True, maybe I can, if it's okay with S's mom.  But I will still miss you a lot."

"You're trying to make me fall in love with you, mama!"

Friday, August 13, 2010

Sutent Nation welcomes Liz

Back in 2006, when I was still statistically supposed to stay cancer free forever because my kidney tumor was "caught in time" I attended a kidney cancer patient support meeting at a local cancer support center.  The speaker was a young doctor from Cleveland Clinic named Brian Rini.  (cue foreshadowing) He spoke about the newest advances in drug treatment for metastatic kidney cancer.  At that point one drug, Sutent, had been approved and a couple of others were close behind in the FDA approval process.  He explained how the drugs were meant to work - they are anti-angiogenesis agents, which means that they stop the creation of new blood vessels to tumors.  No new blood vessels = no nutrition for tumors to grow.  The patient survival statistics he gave didn't sound all that great to me; I didn't know at the time that so early on in the drug's life, they just didn't have long term results yet, and didn't stop to think that many of the participants in the clinical trials were probably people who were very sick, looking for anything to try.  I remember coming home that evening and telling Jim that I sure hoped I would never need drug treatment because Dr. Rini's talk had scared the bejeezus out of me; there was no 'curative' chemotherapy available and so the choices sounded frankly pretty crappy.


Fast forward 4 years... in that time I had a lung nodule scare, which caused my uro-surgeon to send me to an oncologist... the first appointment available being with one Dr. Brian Rini.  The nodule turned out to be nothing and I enjoyed another 2 years of NVED status.  That joy was blown away by finding single metastases in July 2008 (surgically removed), Nov 2008 (surgically removed). July 2009 scans brought the motherlode - multiple lesions in the liver and a lesion on the ovary.  Goodbye surgery, hello High Dose Interleukin-2.  The IL-2 appeared to do wonders for the liver mets but the ovarian mass continued to grow, decided to balance things out by appearing on the other ovary, and just for fun, adding a mass that attached itself to my colon.   Last week's surgery caused me to go through menopause in 3 hours, but while my surgeon was able to remove the ovaries and their masses, he chose to leave the abdominal one behind.  His thinking was that I was going to need drug therapy, so opening me up to remove that mass would have caused me a much longer recuperation period before I could begin drug therapy.  (Oh and there's that pesky little business about how I would have had a temporary colostomy to deal with.) 

Dr. Rini and I met today, to truly discuss drug therapy for the first time.  He was in agreement with Dr. Drake's surgical decision.  At this point it's clear that as much as we chase the cancer around my body and pluck it out, there are still cells in there, waiting for their chance to be "alpha dog".  A couple of years ago I would have been willing to continue the chase, but even thick-headed me sees that it's never going to be the 'last one' removed surgically.  So, the question became, what drug would he recommend?  When we first talked about drug therapy last year, he recommended either Sutent or a clinical trial of two other drugs.  Prior to today's visit, Jim and I discussed what options I might be offered this time, and Jim said what I was thinking... no clinical trials right now.  Dr. Rini didn't mention trials this time anyhow.  He felt that my best options right now would be Sutent, which is considered the gold standard for renal cell carcinoma, or a similar but newer drug called Votrient.  Votrient is believed to maybe have fewer side effects than Sutent, but because it's so new, there's not much data on whether it's also more effective than Sutent.  Dr. Rini started off by saying he had no real leaning toward one or the other, but it became clear as we talked that if he had to pick for me, he'd pick Sutent, which is what I did choose.  He did also mention that since the liver mets are stable (except for the one that shrank, yay!) and the abdominal mass left seems stable, I could wait 3 months and re-scan before starting treatment.  He and I both shook our heads "no" at that idea.  Drugs are inevitable, and waiting 3 months might be okay, or might be a fertile breeding time for my cancer cells.  After all, I had clean scans in April of 2009, and all hell broke loose as a result of July's scans.

I need to do some more healing from my surgery, as stopping my body from creating blood vessels might not be a good idea while it's trying to mend.  Next week I will be going for scan-o-rama day on Tuesday... CT of head and chest, MRI of abdomen and pelvis.  When we talked in May, Dr. Rini told me that he'd probably have me do MRI of abdomen and pelvis from now on, and a chest xray.  I was surprised by that, and folks I know in the kidney cancer community were insistent that I should be having CT of the chest instead.  I asked him about it today and as I suspected, he's mostly concerned about the amount of contrast I'm having to take (not good for kidneys!) but agreed that we'd get a CT this time for a baseline.   I'll then see Dr. Rini on 8/25 and we'll decide when I start taking the Sutent.

It's an orally administered drug, so no having to go to the cancer center and be hooked up to an IV periodically.  The dosing schedule is 28 days on, and then 14 days off.  After two of those cycles I will have scans for comparison.  If side effects make me too miserable, we'll look at changing the dosage.  I asked Dr. Rini if it was reasonable to be able to keep working throughout treatment.  He said absolutely, that was the goal, and that having the drug help get rid of the cancer isn't worth it if you are too sick.  I was glad of that.  Another thing I thought was cool was that as soon as we decided on Sutent, he paged a financial counselor to look into what my health insurance copay will be for the drug.  I like that he was concerned about that aspect of the treatment; these drugs are EXPENSIVE.  I'll find out next week just how expensive for us. 


The side effects are just lovely; from the Sutent site they are listed as follows:

Common side effects

Patients who take SUTENT have these side effects more often than other side effects:
  • The medicine in SUTENT is yellow, and it may make your skin look yellow. Your skin and hair may get lighter in color
  • Tiredness
  • Weakness
  • Fever
  • Gastrointestinal symptoms, including diarrhea, nausea, vomiting, mouth sores, upset stomach, abdominal pain, and constipation. Talk with your healthcare provider about ways to handle these problems
  • Rash or other skin changes, including drier, thicker, or cracking skin
  • Blisters or a rash on the palms of your hands and soles of your feet
  • Taste changes
  • Loss of appetite
  • Pain or swelling in your arms or legs
  • Cough
  • Shortness of breath
  • Bleeding, such as nosebleeds or bleeding from cuts
I know many fellow kidney cancer patients who have had various combinations of the above; there's lots of information they have already and will share about combating these effects.  

Sounds like a treat, doesn't it?  I'll admit, I'm a bit scared that we've arrived at this point.  But I also feel hopeful that we'll see good results with the treatment.  And 5 other drugs have been approved since Sutent, so there are other avenues to try if it doesn't work for me.

Monday, August 09, 2010

Royalty

After having surgery, many people rest, relax, take it easy.  Not many are lucky enough to be able to spend some of their downtime making themselves into royalty!

The girls stayed home today; and while playing found a tiara making kit that Carly had received for her birthday but never opened.  There were three tiaras included; perfect for our family since Jim is not into the bejeweled thing.  So we girls sat at the kitchen table busily gluing bling onto our cardboard forms, then took them outside to photograph.


















Bailey, King of Dogs, was not too impressed, but enjoyed the attention while also enjoying the sunshine.

Sunday, August 08, 2010

48 hours ago

48 hours ago I was deeply asleep, while my surgeon probed my pelvis.  He found that both of my ovaries needed to be removed; we knew the right one was going but the left was questionable.  He could tell by the sight of it that both had been invaded by renal cell carcinoma... so while that was not good news, it was far better than if they'd found ovarian cancer.  Two primary cancers is something I don't need in my life!  I have a hard time fitting one primary into my busy schedule.  So, 48 hours ago I was a woman with eggs, old as they were, still inside me; now I am in menopause.  But the removal of the cancer is far better - I wasn't really using the eggs anyhow.  The hormones produced by the ovaries I will miss, but that can't be helped.  Hopefully my transition into post-menopause land won't be harder on my family, friends and coworkers than in will be on me.

48 hours ago I had hope that all viewable cancer inside me would be removed in my surgery.  However that wasn't meant to be.  The one mass away from the pelvis seems have to communed with my colon, so the surgeon chose not to remove it.  Removing it would have meant converting to an open procedure which would have a longer recovery time, thereby delaying the start of drug therapy.  My sweet sweet husband, after talking with the surgeon, immediately called my oncologist to make an appointment to talk about systemic (drug) therapy.  We'll see him on Friday, the 13th... hopefully not an omen of a date!

48 hours ago I assumed I'd be spending the night at the Hotel Cleveland Clinic; something I hate doing but knew was a necessity.  It was hard on the girls when I told them I'd have to spend the night in the hospital, so we'd be apart two nights.  But I told them that they could come with Daddy to pick me up, a small consolation but one that helped a bit.  When I was in the PACU (post anesthesia care unit or what we used to know as recovery room) I started to find out that maybe this wasn't the plan.  I asked the nurse when I would see my family, since I expected them to come into PACU to see me.  She told me that once they moved me to the outpatient area, I would get to see them.  Outpatient area... huh?  Sure enough... after I'd been in PACU about an hour and a half, and my pain was under control, I was sent down to the same area I'd been in for pre-op... in fact only 3 rooms over from where I'd been just about 7 hours earlier.  I was told by the nurse that once I was able to get up and use the bathroom, that if I wanted to go home, I could.  I did have the option to stay overnight if I wanted to or felt that I needed to.  I had actually convinced myself that an overnight stay would be okay, so that I would have the use of the moving bed and bed rail to get in and out of the bed that first night.  But on the other hand, I would likely have the leg compression cuffs on, and an IV attached, which would mean I would still need assistance to use the bathroom.  And the hospital is noisy and hot, and you never know who your roommate will be.  So I chose to go home.

48 hours ago my girls thought they wouldn't see me until Saturday.  Jim had called the day camp after surgery to let everyone know I was okay.  On Carly's side the teacher relayed the message to her, which helped her feel better because "I was worried about you all day, Mama".  My poor baby... On the 'big kids' side of the building, the teacher let Rebecca talk to Jim.  He explained that Mom "might" come home on Friday or on Saturday, but that he would be the one picking her and her sister up that afternoon.   Jim and I left the hospital around 3pm, after I had done the requisite peeing, gotten dressed, and received a dose of percocet for the road.  We stopped for a small bite at McDonalds, dropped of my prescription, and went to pick up the girls.  I of course stayed in the car.  Rebecca about flew out the door of the school and into the car, where she lapsed into a stunned, happy silence.  Carly was equally happy to see me.  After that, we stopped at my sister's house (less than 2 miles away) to pick up the girls' overnight things, then to the pharmacy for my drugs, and were still home by 5 pm.  So in less than 12 hours we were back home.  Amazing.

48 hours later, I am sore, but the medication is very helpful.  When awake, I feel good, very much like myself.  I am napping more, and having the longest, weirdest dreams... fortunately not a bizarre as the ones I had during my IL-2 treatments.  Friday night I slept in a recliner in the living room, with Rebecca in the room with me in case I needed help.  Last night I slept in my own bed, and was able to sleep on my sides; what bliss.  After the nephrectomy it was a good 3 weeks before I could do that, and I never properly appreciated how good it feels to sleep in bed until then.  I have been good about taking it easy, though last night before I went upstairs I felt compelled to empty the dishwasher.  Hm, maybe this surgery will turn me more domestic?  Wouldn't that be nice!  After I see Dr. Rini on the 13th, I'll have my follow up with Dr. Drake on the 23rd, which is Jim's and my anniversary.  Hopefully at that point I'll be feeling well enough to go back to work.  I will not push myself back too soon, but on the other hand, if I can do it, I'm not going to laze around the house for extra weeks of leave.  We just can't afford that, since my short term disability pay is only 70%of my pay.  But it will all work out, because it always does.  I plan to remain here to pester my loved ones for quite some time still.

Thursday, August 05, 2010

I know, I should be in bed...

... seeing as how I have to be at Cleveland Clinic at the eye-rubbing hour of 6AM!  I guess I'm the first procedure of the day.  I'm actually glad of that, so that Jim can spend time with me then go home to the girls.  They're at my sister's house tonight; he'll pick them up from day camp tomorrow.  They took the news of my surgery better than I'd anticipated, mostly because I don't have to travel to another city this time.  I told them they could come with Daddy to pick me up on Saturday, assuming that I'll be only staying the one night, and they liked that.

Today I felt anxious about the surgery; I can't put my finger on my specific thoughts but I just didn't feel confident that things will go well.  Late this afternoon I decided that maybe I should take a xanax to help me sleep (since it worked so well last week!)  But now I'm feeling more optimistic about it, and thinking that maybe my positive thoughts will influence what happens tomorrow.  This idea shouldn't be a new one for me; in fact, it's a good outlook to have in general.  However, I think I've been afraid to think positively in case something negative happens, so that I won't feel so crushed.  That happened to me 2 years ago, when I had my first met removed.  I'd been sure it was just an oversized lymph node; when they told me that it was in fact RCC I was stunned.  But now that I'm firmly on Stage 4 Street I can handle this kind of news a little bit better... maybe not much better, but a little bit.

I took the day off from work and it's been a lazy one, other than catching up on laundry.  I took Rebecca to Dick's Sporting Goods for her first pair of soccer cleats and shin guards.  She is signed up for our local rec soccer league this fall, and I had enrolled her in a four-day skills camp to get her up to speed.  Carly will be playing soccer this fall as well, but a group comes to her preschool every week and has a soccer class, so I'm not too concerned about her.  Rebecca was pretty excited about the new shoes, and is looking forward to the season. 

Afterward, we went to the library, so that I could stock up on reading materials for next week.  She wanted to look for books too, now that she has become a real reader.  She just finished her first chapter book, Beezus and Ramona.  Her interest was sparked in the upcoming movie, but she really enjoyed the book and is now started on another Beverly Cleary book.  I am so excited for her - there are so many good books out there!  I told her that I had read Beezus and Ramona too, as well as a lot of other books we looked at today.  We wanted to look something up in the library catalog so I coached her as she learned how to search on their computer system.

Carly chose not to come on our errands with us, so we had some nice one-on-one time. 

Carly had something to say...

Last night at Target, she kept asking me, Mom, what about the roast beef and the pea soup?  I had no idea what she was talking about, and she kept asking me, not using different words, but talking louder, like volume would help.  Finally she said, "Anyone can roast beef, but nobody can pea soup."

Pause...

Then I started to laugh... Oh my.. where did she hear this one?  She proudly announced, "On iCarly!"

Thank you Nickelodeon, well played.

After I finished laughing, I did explain how to set the joke up better, by asking, "what's the difference between roast beef and pea soup?"  So tonight she tried that out on my sister and her family.

It's a proud mama I am today... (shaking head and laughing)

Monday, August 02, 2010

Cleared and ready for takeoff, or should that be take-out

Last week I had my pre-operative appointments at the Clinic... came through just fine, though I didn't think there would be much of a problem.  My blood pressure was a touch on the high side, just the upper number, which the internist I saw commented on but wasn't concerned about.  I met with Dr. Drake's nurse practitioner, a super-nice woman named Barb.  She went over what I need to do before surgery, which is the dreaded bowel prep (aka clean out your intestinal tract quickly with the use of chemicals).  Now I know why I scheduled PTO for the day before surgery... I had somehow had the crazy idea of doing something fun on Thursday!  Silly, silly mama.  We talked about what he'll be removing, and I got some clarification from our conversation.

The right ovary - gone.  It's in the middle of this mess so it's out.  The mesentery mass - gone, unless it's too close to a major blood vessel, as Dr. Drake had explained.  Left adnexal mass - gone.  I've been thinking a lot about the left ovary, which has the mass close to it but not on it.  The idea of leaving the ovary in has been bothering me, given that while small, the chance that we are looking at ovarian cancer is there.  So I asked Barb if he shouldn't just take it out.  She explained that they will look at a sample of the mass right away while I'm in surgery so they will know if it's ovarian cancer or not... and so if not, and he can spare the left ovary, he will.  That was reassuring news; both in terms of my ovary and in not having to wait so long for answers.

If Dr. Drake is able to do the whole procedure with laparoscope, then I'll stay over one night in the hospital and go home Saturday.  That is my big hope, so I'm sending positive vibes to my mass, telling it to get the hell away from my intestines!  As many of you know, staying in the hospital is torture to me.  I know it's no picnic for anyone, but I am just so uncomfortable there, and can't stand not being at home where I can relax. Wah wah wah... I feel truly grateful that in comparison to many other people, I have it quite easy... however, it's my blog so I'll whine if I feel like it.

Now I will tell a shameful tale about myself.  On Thursday I felt pretty sleepy, going in to the hospital for my tests.  Friday I was also really sleepy in the morning.  A friend drove me to work Friday because she had meetings in my building and Jim and the girls were picking me up to meet some folks for dinner.  I tried to stay awake and perky during the commute, but my friend was on to me... in a nice way.  Both days coffee and activity at work got me going after a bit. Then on Saturday I just wanted to sleep and sleep again.  Jim asked me if I'd taken my morning meds, one of which is a stimulant for ADD.  I told Jim that I had, but maybe not having any coffee was really knocking me out.  In the early afternoon I finally roused myself enough to do some chores.  In the kitchen I stopped to refill my morning pill minder.  Each day along with the ADD med, I take an anti-depressant and blood pressure med.  A couple of my meds look different lately because one recently went generic, and the other is a generic from a different company than it used to be from.  So, I'm still getting used to how my pills look.  As I refilled the daily boxes, I came to a horrible realization... for the past few days, instead of my hypertension pill, I was instead taking a Xanax.  NO WONDER I WAS ASLEEP!!! And now it made sense that my blood pressure reading on Thursday was a little high.  I am now back on the right pills and the Xanax is tucked away in keeping with its 'as needed' status.  Another bout of spaciness... chemo brain, overwhlemed brain, aged brain, combination?  Who knows.

Monday, July 19, 2010

Heavy

This evening Rebecca came up to my computer because I had promised her she could play games on Facebook.  She began hugging and kissing me, professing her love, and said, in a happy, light-hearted way, "I hope you never die, and I hope I never die."  I laughed, and told her that we'll all die someday, but hopefully not for a long, long time.  I was reading email, specifically from my kidney-onc list.  She saw what I was reading, and asked me the following:

"Do you like having cancer?"

It was an honest question, asked without any agenda or motive, just simple curiosity.  I told her no, I don't like having cancer.  I wish I didn't have it, but since I can't "un-have" it, I just deal with it. 

Then she asked me,

"Is there anything good about having cancer for you?"

It was on the tip of my tongue to say no, nothing.  Then I glanced over at my monitor, where my email program sat open, filled with messages from my kidney-onc friends.  I told Rebecca that she had just asked a very good question, and that I wanted to say no, there's nothing good about having cancer.  But actually, I have met a lot of really nice, really wonderful people because of my cancer.  These people are willing to share information with each other to help all of us.  And I am glad I've met them, so that is something good.

I asked her if she is scared about my having cancer.  She said, "Nope!" which was an excellent answer.  I told her that I was glad to hear that.  As she knows, I reminder her, I get treatments when they find something, then I just get to live my life when I don't need treatment.  It's just how it is right now, I told her, and she seemed to accept that.  I hope that when we tell her and her sister that I'm going into the hospital, that she can be this calm about it.  She is maturing, for sure, though.

Saturday, July 17, 2010

At least I'm doing better than THAT guy

On weekday mornings, I generally wake first and take a shower before waking Jim and the girls.  The other morning, I stumbled into the bathroom and started the shower.  As it warmed up, I idly took a look into the toilet bowl to see if it needed cleaning.  (Rebecca is learning how to clean toilets among other chores to earn rewards.)
Imagine my surprise when what I saw in the bowl was one small dead mouse floating on the surface of the water.  

Yes, he was dead, and yes, I was still way creeped out anyhow.  I ran back up to our bedroom and woke Jim.  He stirred a little until I said "I have a problem and I need your help."  THAT sat him up quickly.  He looked at the mouse and laughed.  We decided to get the girls up to see the spectacle before getting rid of it.  They both have that kid-fascination with dead things and animal things, so we knew they wouldn't be too grossed out.  Carly wanted to know if he was still alive, and we explained that he wasn't.  "Why are his eyes open then?"  Fair question.

Jim gave our rodent buddy a burial at sea and we all moved along with our day.  Not a typical morning at our house.

Tuesday, July 13, 2010

Back to life

Thanks to all for the nice comments here and on my Facebook page; I really appreciate them.

While I wait again for the next chapter in this story, life goes on.  Work is work, home is home, never enough time to get done what I want or need to do.  As I was afraid, the girls' enthusiasm for earning marbles by doing chores has totally waned.  Tonight Rebecca sat with me at my computer bugging me to let her play games on some site the kids at day camp play on in the late afternoon.  I told her that she should go downstairs and unload the dishwasher to earn a marble while I finished what I was doing online.  She doesn't have to put away anything she can't reach; all of that stuff goes on top of the stove.  No dice... she didn't want to go downstairs.  I just had a talk with both of them and reminded them that if they want special items they have to work on some chores, and that if they aren't going to do any chores for marbles, then we'll start making a list of chores for them to do just because!  I also think we have too much TV time going on; it's time to limit that and then the TV goes off.  Because when they get into the mode Jim and I call "eyeballs glued to the TV" there's no talking to them.  I've been assured by other parents that my kids are not the only children in the world who have this affliction, but it's still pretty sad to see.


I've been thinking of up-sides to my upcoming surgery, to cheer myself up.  Here is a list:

- I get to stay home and take naps
- When I'm not napping, I can go onto Facebook and hone my mad Bejeweled Blitz skillz
- If they take out my ovaries, no more pesky periods!  Ironically, I just bought a big box of tampons at Target the other day; if that doesn't seal my fate, I'm not sure what will.
- Maybe if they have to resect some of my small intestines, it will have the effect like a weight loss surgery... without all the co-pays.  Okay, that actually wouldn't be a good thing, but shhhh... just looking at the sunny side of the street here
- If they have to do an open procedure, and I get to be a guest of the fabulous Cleveland Clinic, Jim can bring me asiago bagels from Au Bon Pain in the hospital
- Get well cards!  Need I say more?  
- I can feel like I'm REALLY getting my money's worth out of my health insurance... as if I didn't already get that satisfaction from how much they spent on my IL-2

Is there anything else I'm forgetting?

Monday, July 12, 2010

Speaking of sensitive subjects

This weekend I learned a lesson.  As a person with stage IV cancer and a young family, watching a movie that includes the death of a parent is not wise.  I watched a movie that has been on my Netflix queue for a while, a movie that will remain nameless so as not to provide any spoilers.  However, in the film, the main character dies, leaving a spouse and a young child behind.  The movie was based on a book that I read a few years ago, pre-stage IV-ness, when these situations would make me sad, but not overwhelm me.  That is what the film did... I was overcome with emotion while watching it, thinking that this might be me before too long.  It's certainly a fear that lives in a piece of my brain all the time, but a fear that I try to calm whenever I can so that I can remain positive and focused on if not defeating this cancer, at least beating it back so that I can enjoy life.   I decided that for the time being, I will not seek out films that I know have this kind of subject matter... there is plenty else out there to watch.  I do enjoy dramas but I think that laughter would probably be my best medicine right now.

Two years to the day

I have a date... for surgery.  Today Jim and I met with Dr. Drake, who will be performing the surgery on August 6.  That happens to be two years exactly from the date I had my first resection of a metastasis,or in other words, had kidney cancer removed from another part of my body.  

He plans to do the surgery via laparoscope if possible.  I will most certainly have the right ovary removed, as that is the side where the largest mass is.  The mass might be involved with some loops of my small intestine.  If that is the case, he may have to "open me up" to remove some of the small bowel and repair it.  He will also get the mass by the left ovary.  I have a cyst on the left ovary and it's possible he might remove the left ovary as well.  If that happens, I officially will be in menopause... weird thought.  Lastly, there is an additional mass in the mesentery, that Dr. Olencki had mentioned in Columbus, but nobody in Cleveland seemed to see until now.  Dr. Drake will try to remove it, as long as it's not attached to a major blood vessel or anything.  If that is the case, he'll take a sample for pathology.

If everything goes well and I don't need to be opened up, I could go home that day.  On the other hand, if it becomes a more invasive, major procedure, I could be in the hospital for 3-5 days.  Oh joy; how I so love being an inpatient.  But, I do what I have to do... and the more he can get out, the better.  I'm not thrilled about possibly losing both ovaries, though there are upsides to that as well as downsides, and being alive and well while hormonally challenged beats many alternatives.

We will not be telling the girls about my surgery until that week, so that they don't freak out and obsess for weeks about Mommy being gone.  It's been a great several months and we've gotten used to being together again.  Carly is showing some signs of her difficulty with my hospitalizations, more so than she did when they were going on.  She is more lovey-dovey with me, telling me often that she loves me, and wanting to cuddle more than she used to.  Rebecca still likes to come up for a hug at random times, but has been overall more accepting of everything as she has matured.  Carly continues to talk to us about death.  Over the weekend she has mentioned that she thinks Jim and I will die before she grows up.  I asked her if she was afraid that was going to happen, and she said she was.  We talked again about the idea of trying to be as healthy as we can so that we don't die for a long time, and she accepted that.  I might just be extra sensitive to this topic, while for her, asking these questions and considering these possibilities may just be a part of her growing up process. 

Saturday, July 10, 2010

Beat off my feet

Whew... it is nice to be off my feet.  I spent the day on household chores like laundry, picking up, a couple of errands.  There's one load left in the dryer, after which all clothes not currently being worn, or hidden away somewhere, will be washed.  I don't mind laundry, except my energy peters out toward the end with the "putting away" phase.  Not sure why that is, and it is annoying to have a basket full of clean clothes blocking my path in the bedroom.  Apparently it's not annoying enough for me to put everything away most of the time, though I am working on finishing what I start.  (Now there is a theme I could take off and run with, but not tonight.)  The girls were very helpful earlier today, and so the first few loads are all hung, folded and put where they belong.  We're trying a system of earning marbles for various chores, with the goal of getting some special treat (toy, outing or some such) once the marble jar is full.  Unfortunately their desire for marbles didn't remain high all day, but hopefully they will pick up a little steam.  I think I need a marble jar, now that I think about it.  Jim will have to help me decide on what would qualify for how many marbles!

My plan for today had been to work on really clearing out and cleaning up our living room.  I also wanted to work on washing our deck with the power washer Jim bought a while back.  Didn't get to either of those things but I am still satisfied that I didn't waste my day.  Tomorrow we have an early birthday party for my niece, then grandma wants us to go to a local art show with her.  I am seriously considering having her take the girls and I would stay home to work.  Not only do we have the two projects above, but we decided this evening to take the rest of the d@mn mulch pile and put it under the girls' playground set.  That should go fairly quickly, but still needs time.  We'll see though; I do enjoy walking around an art show.  I think the weather is supposed to hold for most of the week, so I could defer the outside stuff until a weekday evening.

There is a part of me that really wants to get all our home projects done, so that if at some point I am not feeling well for an extended period of time (like if I have drug therapy) then I will be able to rest comfortably and not stress about my house.  It also occurs to me that if the worst happens, I don't want to leave Jim with a cluttered home to deal with on top of everything else.  But really, I hope and plan to keep living life like I am now, and want to have a nice, comfortable space in which to do that.  Rebecca has commented a few times that we should try to get on the program Clean House.  Uh, not... we're not as bad as some/most of those folks, but I would die of mortification to have all my crap displayed on national television!  I certainly don't plan on applying to be on the program.  A while back she and I were watching The Biggest Loser, and she was aghast at the thought that if I were to apply to be on that show, and be accepted, that I would be away from her for more than 2 months.  So, she kept telling me I couldn't go on that show.  It was never something I really considered, as I kinda need to keep my job and so forth, but I will admit, the idea of getting to just focus on myself for an extended period of time is very appealing!

Friday, July 09, 2010

Calmer

This breathing stuff helps... it really does.  Whenever I start to feel nervous or fearful about what may lie ahead with my health, I try to remember to focus on my breathing.  It's keeping me calmer and saner than I might otherwise be.  Imagine what some actual meditation might do for me.

Despite the stress of the day on Wednesday, it was also a wonderful day.  We have a new nephew, born to Jim's brother and his wife.  He's the second boy of eight grandchildren in Jim's family.  The first grandchild was a boy and then we've added six girls to the clan over the last seven years.  The new parents didn't find out the baby's gender before he was born, so it was a fun surprise for  everyone.  Yesterday I stopped at the hospital after work to visit with them.  He is so cute and tiny, with a full head of hair.  When I held him I realized that I've forgotten just how small a newborn is.  For a while after Carly was born, seeing a baby like this would have given me a dose of baby lust for a while.  We knew that we were finished with our family after Carly, but as she got older and bigger, I longed to have another baby in the house, someone tiny to hold and to cuddle.  It took a while, but finally I stopped feeling so nostalgic around babies, and now I just enjoy them when I'm with them.  Seeing photos of the girls at younger ages still makes me wistful at times, but I'm focused more on enjoying them now and on looking forward to more adventures with them as they continue to grow.

Wednesday, July 07, 2010

Facing fear and anger

Today I went to see the therapist who I have seen at various times over the past couple of years.  I hadn't seen her since last fall maybe... but realized recently that it was time to get some perspective, to help me get back to mindfulness.

What brought me to wanting to reconnect with her is my eating habits of late.  One good thing about being sick from my IL-2 treatments was the weight loss I achieved during that time.  Of course it isn't a diet I recommend, and it wasn't lasting, once I got back to feeling more like "myself".  Then in late March I was given a weight loss goal to meet by October 1 in order to lock in a lower premium on my family's health insurance for next year.  Unfortunately, they based the goal on the last recorded weight in my medical record in 2009, which was about 10lb lower than when I was in March.  Since then I've gained 10 more, and it was just the other day that I realized that I've been unconsciously sabotaging myself.  It's why I don't join any organized weight loss programs; I've been there before and I always feel pressure, which leads to over eating, and then feeling even more hopeless.  I did join our "shape up and go" program at work, but made sure not to commit to weight loss as one of my goals, instead focusing on positive things I can do.  That is working out well; I feel good and healthy and while I am still more sedentary than I would like to be, am definitely getting more exercise than I used to.  But still I find myself eating by myself, eating things that I shouldn't (usually salty stuff, a big no-no for a hypertensive one-kidney wonder) and more than I should.  At one point I was in the car, desperate to stop for some kind of snack, when I heard my therapist from a previous session... asking me what would happen if I didn't eat during that commute, what would I feel?  what would happen?  Good questions, those, and when I was more mindful, I was able to use those questions to stop myself.  But when I heard them in my mind's ear recently, I said, eh, screw it.

These were the things I was planning to discuss this afternoon.  But as therapy goes, we ended up not talking much about my eating at all.  Instead we talked about how I am doing, and how my family is doing, at this point in my cancer journey.  I got teary talking about it, and finally R, my therapist, pointed out to me that I am keeping track of Jim, and of the girls, but not myself.  She asked me if I am angry at myself about my situation.  At first I didn't think I was... I don't feel like I did anything in particular to bring about cancer, but I am angry that the cancer could rob me of my life with my family, which is so precious to me.   R told me straight out that I need to get off the "anger train" because all it is doing is feeding my fear.  How true that is... and how draining the anger can be, even when I didn't know that was exactly what I was feeling.  We talked some about meditation, which is something I am becoming increasingly interested in, and happens to be something R teaches.  I want and need to let the anger and fear go, and replace them with kindness and grace.  This is important not only for my personal state of mind, but for my immune system.  I've been reading more and more about the importance of building up one's immune system, whether you are currently sick or not, and I know that I want to be kinder to myself, rather than as critical as I tend to be.   A life filled with fear is not what I want for myself.

I got an opportunity to face my fear and anger shortly after my appointment.  Back at my office, I got a call from my gynecologist, who had received the results of the pelvic MRI I had last week, in preparation for my consult with the gyn-oncologist next week.  I don't have the written results yet, and probably won't until tomorrow, but three masses were noted.  The first and largest is at my right ovary, and is the one we've been watching.  It was unclear from the MRI write-up whether the mass is involved with the ovary or just next to it, but there also may be growth into loops of the small bowel.  A second mass was noted in the mesentery; this was something that Dr. Attaran had read to me last week from the CT scans in May, but we didn't see any mention of it in prior scans.  As she read the word "mesentery" I remembered Dr. Olencki in Columbus mentioning this mass last fall. OK, so that wasn't really new either.  But there was also a small mass noted on the left side of my pelvis too.  Great... super news.  Dr. A. said that it would be up to Dr. Drake and me as to how we proceed since there is not just the one mass to deal with.  I don't know what to think... and am consciously trying not to think about anything in particular.  Shortly after I got this call, I had to attend a meeting, one in which I really didn't have anything to contribute.  Because I could be silent, my mind was able to wander to bad places.  Then I recalled R telling me today to keep noticing my breathing, so I did that, and kept taking deep breaths.  Before too long the panicky feeling dissolved and I was able to focus on my meeting a bit more.

How lucky was I to have that experience so soon after my therapy appointment????