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.