28 December 2011

I'm Tired.

I have spent almost a week in bed. I don't ever want to get out. When I first began my treatments, surgery and then chemo, I was all about staying active and putting up the good fight etc. Now I'm just sick and tired. The thought of going to the gym is unappealing. Starting my walking routine again sounds like a stretch and frankly, going back to my old life of cooking and cleaning and errands and logistics is a pain in the ass.

There was a point in this journey when I felt energized to rebuild my life in a more authentic, healthy and mindful manner but now I question whether I can even get out of bed in the morning on a regular basis. It's going to take a lot of work to get back to where I was and I'm not even sure I want to go back there. And even if I did, I have doubts I can.

24 December 2011

Deep in the Chemo Dumps

I was ecstatic about the timing of my chemo around Thanksgiving, and it is also acceptable to me that I am in bed this weekend.  There's no good time to feel like shit, but this weekend really isn't so bad.    I was able to do the first few nights of Chanukah, but now I can take a back seat to the fat man and bundle off the kids to their relatives who celebrate Christmas.  Dan was around yesterday and today to help me get situated, and he'll be around the next couple of days to pull me out.  So all in all, it's not bad, although the latkes on Wednesday night tasted funny.  I'll have to make up for that next year.

I am having muscle and bone soreness from my Nulasta shot, which is being nicely managed by the ibuprofen.  My mouth is not too bad this round.  It is gummy, but not full of sores... yet.  My skin feels funny, tight and dry, which is both a function of the current climate and my difficulty drinking as much as I should.  I'm using lotion almost hourly on my hands as I've developed skin splits on my thumbs.  No doing dishes for me.

The new symptom on the block is that my body can't seem to regulate temperature.  I freeze and burn up.. at the same time.  My feet are like ice cubes, my torso is hot, my head sweats if I'm wearing a hat and freezes if I don't.  My arms and hands are chilled, my legs are too warm.  Every once in a while I go into full on hot flash and need to kick off the covers and get naked.

Dr. Kimo and I discussed the steroids during my last treatment and he suggested holding a couple back and taking them tomorrow so I have the energy to get out of bed.  I'd like to make it over to Dan's sister's house for xmas din-din.  We'll see if that happens.

My taste is shot - even the coconut water is yucky.  I'm drinking Pellegrino, (which has enough bite to mask the metallic taste of water,) and mango.  My protein drinks are tasting yucky so I'm eating eggs (fried over easy,) and cups of milk/soy chai.  I had cream of wheat this morning and it was lovely.  But it seems to be changing hourly and I am also having some nausea this time, which I haven't had before.

Dan is in the dumps with me, (Christmas does it for him,) and so we shall muddle through together and look forward to me feeling vastly better in a month.
       

21 December 2011

Nuts and bolts

It's been a while since I did a post on medical nuts and bolts so here's where I am now.  I developed thrombophlebitis at my last chemo catheter site, three weeks ago.  It's a hard purple lump about one by one and a half centimeters.  The skin on top of it is starting to peel.  I had my doc look at it and she was unconcerned so I'm doing the normal treatment for it: Ibuprofen, heat and gentle massage.  I assume I will also have one from today's treatment. With all the bloodwork and IV's I've had in the past three months it's a miracle they can even find a good vein anymore.  She was really straining looking for one today and ended up on the backside of my arm halfway between my elbow crease and my funny bone.  It was uncomfortable but I didn't want her to stick me again so I just let it ride.

I had my last expansion a couple of weeks ago.  My foobs are a solid 'B' now and that's all I want.  They look great under clothes and awful up close and personal.  I have a horizontal incision scar that runs from each armpit and ends an inch from my sternum on one side and a half inch on the other.  The scars are red and slightly indented.  If I am wearing a light t-shirt, you can see the indentation.  They still feel foreign.  My arms hit the side when I move them forward and it pushes the mass to the middle.  They are hard, like a tensed muscle. They do not bounce, or move for that matter.  I have no feeling from two inches above the incision to a half inch below the foob where it meets my ribs.  I still have no feeling in my left armpit at all, and the lower half of my right armpit.  The feeling is coming back on my right arm, but the back of my left arm is toast.  At this point I've decided against surgically manufactured nipples.  I'm still entertaining the possibility of tattooed nipples, but I'm leaning towards an art tattoo to camouflage the whole area, scars and all.  I'll make that decision after I have the expanders swapped out for the implants.

I stopped my depression meds and I'm feeling ok so far.  In fact I've stopped taking everything except the bare minimum of what I have prescribed.  I'm on my thyroid med daily and OTC Claritin and Ibuprofen as needed.  I've not taken Ambien or Klonopin for a couple of weeks.  Klonopin is a no-no when I start my Tamoxifen in January.  I'll have to rely on Vodka and Fireball.  In fact I'm totally laying off the anti-anxiety meds because in combination with all the other crap I have in me they are unpredictable.  Sometimes they make me nauseous, sometimes they give me headaches, sometimes they constipate me, sometimes rather than chilling me out I get cranky.  So I'll just work on lowering my stress by eschewing commitments and relying on sitters and playdates when I need to rest.  And I'll do a shot when neither of those work.

I don't sleep very well, but since I have essentially cleared my calendar and have few obligations, I'm doing ok. I'm hoping that once I'm over the hump of this chemo I can start walking and going to the gym again and that will help me sleep better.  I've gained about 15 pounds since my diagnosis.  I just don't have the wherewithal to discipline myself on diet, and I've not felt well enough for a sustained exercise program.  We'll see how I do once I get stabilized on the tamoxifen.

My mobility in my arms is still compromised.  I did rhythmic boxing with the kids on the Wii this weekend and really suffered for it.  I can't throw a punch with my left arm.  My right arm goes all the way up, but not too far back.  My left arm won't straighten when raised over my head.  Once I'm out of the chemo compromised immune system woods, I'll be signing up for a yoga class.  I'm pretty stiff and atrophied all over from spending the last three months mostly in bed.  I know it sounds like heaven, but bed is really overrated when it's mandated by illness.

I still don't mind being bald.  It's actually helpful in that I've started having hot flashes at night and nothing cools me down like taking off my hat.  I don't mind that I no longer have to shave my armpits and legs, but having no interior nose hair means that my nose drips nearly constantly.  I still have eyebrows but my lashes have thinned considerably, leaving me prone to getting stuff in my eyes.  I actually have a bald spot in my lash line on my right eye, about a half centimeter long.  I suspect it will get worse with this last round.  I've been avoiding nail polish because I'd wanted to monitor if/when my nails would go to hell but that has not happened so far.  I need to wait another couple of weeks but if I have no changes by then, I'll be heading for a full on pedi thereafter. All in all I'm doing pretty good.  The oncologist loves my blood counts and I've had no serious complications.

I have an appointment in 3 weeks for a follow up and to start me on my next phase - five years of hormone therapy.  I will probably not be on tamoxifen for the whole five years.  It is only used pre-menopausal and since it looks like I may cross over within the next five years and there is a different protocol for post menopause, they will adjust the meds accordingly.  We'll just have to wait and see.



20 December 2011

It occurs to me that I missed posting the Sunday Limerick so here it is a bit late.


Yes, chemo is kicking my ass
(Which they didn't go over in class)
But today's the last one
I'm officially done
And it's now a thing of the past

15 December 2011

Musings

Have you ever noticed that whenever you go to the post office in December the combination of the long line, the winter woolies you are wearing, the packages you are balancing and the sauna-like interior temperature of that particular brand of government office produces the reaction of flushing, then sweating, then feeling like you are going to pass out... but not before you get that damn package mailed.


I have taken to whipping off the do-rag, or hat when I feel like that.  I have no problem with being bald.  In fact, most the time I forget about it, (unless there is a draft,) as I rarely see it.  It's like when you have spinach in your teeth and everybody knows except you.  But I will say that when I do that, as was the case in line at the post office yesterday, people all around me shut the hell up.  All small talk ceases as they stare at cancer-gal and thank their lucky stars.  Sometimes I get lucky, and people will let me go to the front of the line... like maybe at Trader Joe's, where the shoppers are so conscientious that they return their own carts.  But there was no way in hell the other shlubs in line were going to let me cut in at the P.O.

On my good weeks, I've been able to do some stuff - like I took out all the trash and recycling this week, which I couldn't do last week.  And I helped N's scout leader carry in all her stuff after school yesterday - but then I high-tailed it outside lest someone else see me and think that I'm ready to volunteer again - 'CUZ I'M NOT.

This morning I couldn't get out of bed.  Just plain couldn't drag my butt out until past 9:00.  I slept fitfully, but that wasn't the problem.  Like I've said before, being tired isn't the thing.  Being the primary caregiver to two high maintenance children for the past several years has proven to me that even when I'm tired like the dead, I can still manage to drag myself out of bed and get them what they need.  But this morning that just wasn't happening.

Now that I'm up, I'm getting stuff off my list - cleaning the cat fountain, catching up on laundry, shopping for this weekend's birthday party presents, checking the upstairs furnace, etc.  I hope I can get everything off my list because the next two weeks are lost to chemo.  And I'm behind on Holiday preparations.  I have enough stuff for one kid for eight days, but not the other.  (I'll leave it to you to guess which is which.)  But why is it that there is always one (or more) easy kid(s) and one who constantly tries one's patience?  Just like a line at the post office.






13 December 2011

Head Meds


It's no secret that I have been on and off meds for depression for most of my adult life. My latest iteration is Zoloft, which has been working very well for me for the past couple of years. I was scheduled to taper off this summer, but my doc felt that I should stay on while I was going through surgery and treatments. You know, stressful stuff.  I kind of wish I would have tapered off so I would have had some sort of baseline.  It's going to be difficult to isolate how I am when dealing with the other drugs coursing through my system.

In our independent research Dan and I discovered that certain SSRI meds are contraindicated with tamoxifen, which is the follow-up treatment I'll have when the chemo is done. It's an oral hormonal treatment that I will have to take for five years. It comes with its own set of side effects, which I'll get into a little later. Zoloft is one of the anti depressants that per certain studies lowered the efficacy of tamoxifen by half. Recurrence occurred in the test group at a rate of 16% as compared to the control group at 7%. Those results are quite compelling. I mentioned it to Dr. Kimo before my last treatment and he was in agreement that I should probably get off of the Zoloft.

I saw Dr. T a couple of weeks to discuss this (not Dr. Kimo, since the Zoloft is not his prescription,) and she put me on a completely different class of antidepressant. I have been on a tricyclic before, with fair results. Doc T felt we could kill two birds with one stone as the main side effect of the tricyclic is sleepiness, which I've been missing. (Sleepiness, not fatigue... got tons of that.). So the past couple of weeks I've been sleeping more and more and needing more and more sleep.  I've been tapering off the Zoloft and I'm not happy with the results. I've developed an anger management problem. Not cool. I've also developed a propensity for late night snacking, which is extremely out of character for me. I cannot remember the last time I had something to eat after dinner previous to the past week and a half. Now it's a bowl of ice cream before bed, whether I need it or not. I don't even like ice cream.

So now I have another appointment with Doc T later this week to try to see if we can figure out something different. I'm tempted to stop the head meds altogether and just get my chemo done and out of my system, then start on the tamoxifen and get stabilized on that. If I need to add a depression med once I've been on the tamoxifen for a couple of months, I can start with one of the SSRIs that are not contraindicated.  (Although I've been on two of the three with only fair results.)  I sense this is going to be a balancing act - what side effects can I live with, what behavior can I and those around me tolerate, what risk factors are acceptable.






11 December 2011

It's Cancer Limerick Sunday!

I'm on some new meds to help cope
But it doesn't give me much hope
The funk over-takes me
The junk over-bakes me
I wish I was taking less dope.

8 December 2011

Finally Feeling Better, Third Round Rough Spot Officially Done

OK, I'm finally starting to come out of my dark days.  I'm out of bed, (mostly,) and attending to business.  I went grocery shopping yesterday and although it wiped me out, I was able to do it.  (As opposed to the weekend where I literally had to coax myself out of bed to go pee.)  I'm looking forward to going to the kids' Holiday Assembly on Friday instead of dreading it.

I have had some exceptionally gratifying feedback to my post about being entitled to piss and moan about my cancer. Most fall into two categories:  First - It's MY blog and I can write whatever the hell I want, and second, cancer sucks and I have every right to express how I feel about that.  Of course I understand I can write what I want.  But I do need to be mindful of my audience.  Some of my readers are close friends, some are family, some are strangers.  And I also want to stay true to my originals purpose, which was two-fold: To be able to sort out, articulate and otherwise deal with this phase in my life.  I need to clarify my thoughts and feelings on what's happening to me in order to make sense of it.  I feel much more proactive, a driving force in my illness and treatment when I understand what's going on.  In that respect, I gain some control over what is otherwise uncontrollable.  The second purpose is to spread my story - as a cautionary tale, as a guidebook, and as a day to day update where I stand.

Let me clarify what Nameless meant by telling me I should be more positive.  I believe they were merely encouraging me to try to look on the bright side - of which I think I've done a good job.  It's just that, (and I've alluded to this in posts and poems,) I have no bright side right now, (although I know one is coming in a month or so...) and y'all need to know where I'm at - remember one of my goals with this blog is to keep people informed so I don't have to field phone calls and such.  I REALLY don't want to talk on the phone much these days.  In fact, when I'm in bad shape after chemo, I mostly want the entire world to go away and leave me alone.  Bring me some Zico coconut water and a bag of peanut butter filled pretzels and then get the hell out.


It seems like the crazy was not as severe this third round, nor did it last as long.  Then again, Dan and I were somewhat more prepared for it.  I've been relying on third party help from sitters to walk the girls home from school, do their after school routine, (homework, snack and chores,) and hold the fort until Dan gets home.  This has helped tremendously, as by the afternoon, I'm mentally and physically burnt toast.  Don't get me wrong, I have plenty of offers to take the girls after school, but going for a play-date instead of coming home and doing what needs to be done leads to misery for us.  Mentally, I've been more aware of being critical and letting go of things that really don't matter, (but still bug me.) Of course it helps that I know I only have one more treatment.  And it helps that I've really cleared the schedule to the point of emptiness.  (Although empty is not really empty... it just means I have more time to do what I need to do to keep this place functioning, which I need as I'm less motivated and less able to work at my traditional pace.)

Today the sun came out both figuratively and literally.  I do not feel strong enough to go to the gym, my sleeping pattern is the shits, and I am still dealing with annoying side effects of chemo, but at least I'm up and dressed, can do my part to keep the household running smoothly and can enjoy a cup of chai.


6 December 2011

A Nice Long Newsy Post

As you may have noticed, my posts are becoming scarce.  Chemo is much harder than I had anticipated.  For me.  I have to put that caveat in there because it is different for everyone.  Some people sail through it with little change to their lifestyle, just a little more fatigue, or a diet modification, or additional drugs to address side effects like nausea.  It kicks my ass.  Everything about my body feels weird, wrong and broken.  Every day brings new and different maladies that throw me off my game.  Imagine waking up one morning to purple grass and a green sky.  You get up out of the stream you are resting in and blow your nose to pee.  You roll in feathers to get dressed and then head up into a tree to eat your breakfast by stuffing rocks in your armpits. Then you go to your job of swinging a dog by its tail inside a tunnel filled with macaroon furniture.  That would throw you off, right?  Right???

So my body does strange things.  And I'm constantly adjusting behavior, diet, medications and activities to try to feel more normal.  It is a full time job.

I had what I think is my last expansion with Two-Drain yesterday.  At least I think I'm the size I want to be... it's hard to tell because I am carrying extra weight, and you have to remember that if I gain or lose, the new foobs stay the same size.  I must admit I'm not going to miss the weekly trek to his office, the back strain, (from the muscles being pulled forward,) or the discomfort of stretching muscles and tissue.  I'm intrigued that I did not develop stretch marks on the skin over top of the expanders.  There must be some magic plastic surgeon formula for how-big-divided-by-how-fast one can 'grow'.


He would like to switch out the expanders for permanent implants in January but I'm not cool with that.  I'd really like to lose a few pounds of cancer weight before I have another surgery/recovery period.  Also, I'm planning on going to California in February and I don't like the idea of having a trip planned so soon after surgery.  Especially an important trip that involves a lifecycle event.  So instead we will meet in January and talk about a surgery date then.  If it were a perfect world, I'd opt for a surgery date in May, lose 2 pounds a week for four months and get a tummy tuck at the same time.  However, at this point, getting back to my walking-diet-gym routine seems impossible.  I'm just going to slog ahead through the next four or five weeks and try to manage to not alienate every human on the planet.   Chemo makes me cranky.

My last chemo is in two weeks - Dec. 20.  I am dreading it, but I know that it will only get better from that point forward.  I hope to be back to the gym, and walking, by my birthday.  By the end of January I should have some hair re-growing.   All in all, not a long, nor unmanageable timeline.          


4 December 2011

It's Cancer Limerick Sunday!

My days after chemo are dark
Its bite is much worse than its bark
I know this is crass
But it's kicking my ass
While it's shifting my cancer to 'park'

2 December 2011

I'm Entitled

Someone who shall remain nameless has mentioned that my posts are starting to be real downers and I should write something positive. You know, I've been pretty upbeat about the whole cancer thing since I started. Perhaps I should have been a little more reserved in the beginning and then my later posts wouldn't seem so 'Debbie Downer'.

I didn't feel sick at the start. In fact, I was feeling pretty damn healthy. And then I weathered a double mastectomy with few second thoughts, although I've radically changed my body and body image, lost secondary sex organs, and recovered, (mostly,) from major surgery. I had my breasts amputated.

I am ok about losing my hair. It's been a non-issue. Some women have a really hard time but I'm cool with it.

I've had to drastically change my schedule, giving up stuff I like to do, struggling with stuff I HAVE to do, but again, this is my life now, and I've accepted it.

And true to my decision to be aggressive with my treatment, I chose chemo, when I could have easily said no. Again, I understand that it is what I have to do. But it really, really sucks and it's kicking my ass. There are so many unpleasant side effects, and they are overwhelming me. I have another 5 weeks ahead of me where I'm basically expecting to feel like shit. For five whole weeks. It's not that I don't think I can do it, because of course I will. But I'm not looking forward to it.

So if my post doesn't cheer you up, I'm entitled.