Archive for July, 2011

Jul 31 2011

held-over weekend links

had a back-log built up, didn’t want to spend the links all at once, ya know.

From the always-intriguing BLDGBLOG, you’ll never fail to get my attention with a mention of secret rooms

When I’m a more “established writer” by their qualifications, I totally want to attend this

I might have linked to this before, but tattoos that track glucose are worth linking to again due to both coolness factor and health usefulness…

Long and involved but still worth reading about why the right to privacy is more than having nothing to hide…

It may not be the “god particle” but CERN might be getting closer to the Higgs boson particle

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Jul 29 2011

Home Again, Home Again (too much Jiggedy-Jog)

Discharge ended up being Thursday instead of Wednesday, due to (Body Process Alert) several days of diarrhea that was a first as a symptom during all this and since it lasted 3 days in a row (while in the hospital, a week all together) they wanted to hold me for testing.  This was disappointing of course, but no infection found no reason to delay further discharge.

A week later and i find myself almost wishing I’d stayed in another few days.   Not because it was fun in the hospital, but there have been tests and appointments every day since I was released and it’s incredibly exhausting.  I also had to get my first blood transfusion before being released, which on the one hand feels like a set-back, but on the other hand according to the doc is something I probably should have already had to do, so my Special Medical Powers have come through again.  Managing the meds is still a learning curve but way easier thanks to Living in the Future (smartphone app that is a great med tracker).

Anyway, a white blood cell count booster shot every day from Thursday through Tuesday’s chemo, another WBC booster on Wednesday, nurses coming to the home twice to check on me, an occupational therapist yesterday, and physical therapist tomorrow…all of which involve walking and movement when my main exercise for two months has been up and down a hospital hall and around my hospital room make for a wiped out Reesa.  I’ve still managed to go out to eat with family (bald head, walker, and face masks will get you some funny looks in public, did you know?) and eat way too many Reese’s Pieces, and get great baby time (which is good but itself exhausting), so it hasn’t been all bad.

The live-in help is working out well so far, getting along with the family members and learning the ropes of the job.  Since we’re inventing the job as we go along it’s a bit of a creative process; I expect it to take a few more weeks to really settle down into a good familiar routine.  It’s complicated by the fact that since I haven’t been home for two months everything is rather disorganized, and the urge is of course to Clean/Organize All the Things!! all at once.  Ha.  Instead we’re taking it a piece or two a day, which is much smarter and still results in visible, even if slower, progress. Training the other household members to be aware of leaving deathtraps in the thoroughfares (like shoes and such) isn’t as difficult as I’d thought it would be but is still ongoing.  Training myself to do less on my own and ask for more help from the help we’re paying for is a harder process but one I’m working on and improving as well.

Visitors and gifts of chocolate milkshakes (my current obsessive treat when I’m not eating Reese’s products) or other food/gifts/pleasant time shared are still quite welcome even now that I’m out of the hospital.  I’ll still be under neutropenic restrictions for the next few weeks so send your love from afar if you or people you’ve been around are contagiously sick (allergies don’t count, sick co-workers and children do).  Depending on energy levels I might even be able to go out with you on a shared activity such as a quiet lunch!  Otherwise, if I’m not occupied with appointments or baby time I’m still attempting to write and work while passing out over the keyboard, so not much seems changed from the hospital quite yet.  (I even have a hospital bed at home to sleep in to help retrain my body to sleep in different positions.)  though last night I had my first REM sleep that was completely disconnected from real-world happenings in months, so that’s some progress at any rate.

Lesson of the week: when going to a place I haven’t been before, make sure to take the prescribed wheelchair, as I’ll be traveling unknown distances and I can only go short distances in the walker.  Thankfully in this case, we were going to the hospital over the weekend for my WBC booster shots and since Dad was my ride I could use my stepmom’s motorized wheelchair (which was way more fun than my normal one anyway).

Ladies, don’t forget to do those monthly breast exams.  Not only do you not want breast cancer, you REALLY don’t want metastasized breast cancer destroying your skeletal system.  Much, much harder to bounce back from.  Even though I plan to, and shall to the most I possibly can, YOU can avoid that problem while it’s small and manageable and you aren’t paralyzed in your own kitchen or spending two months recovering in a hospital away from your new baby daughter or any of the other ridiculous things I’ve had to go through.  I’ll keep blogging about it, as I think it’s important for people to know what something like this is like, but never worry; this won’t become the all-cancer, all-the-time blog as I’m a Thriver, not just a Survivor, and there’s more to this life than living through cancer.

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Jul 21 2011

learning about hospital tape sensitivities

Published by Reesa under health, tape sensitivities

Micropore = NOT good.  rips top layers of skin off.  Often used by phlebotomists, though they should have the paper tape option as alternative

Transpore = paper tape = much better

Both made by 3M

Lessons learned

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Jul 18 2011

Crazy Hospital Happenings

You know it’s finally time to get out of here when the new admittee across the hall is not only ill, but suffering from some sort of dementia that is causing him to repeatedly yell “help!! help!! get out of my house!!” Which means the rest of us get late meds and short shrift as the poor overworked nurses have to deal with the crazy person they didn’t even get warned about.

Thankfully, it looks like discharge date might be sometime Wednesday.  We’ve got a trial-period live-in help, a pain regimen that is working CLOSE to what we want and may very likely work better once it’s more under my control and not dementia-distracted nurse control, and I’m working on my PT to rebuild my muscular system to help protect my poor hole-riddled skeletal system.

I’m sure you’re all anticipating the story of the saga of how I switched from a near-”terminal” cancer patient to one who is riding out Wednesday with a good chance of years’ more survival, and I think writing about it in bits and pieces will be good for me and my continued healing.  Along those lines, please any of you feel free to ask questions about particular things you’re interesting in hearing more about from the last two months, it will help me get some focus since, my goodness, there’s so very much to write about.

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Jul 16 2011

Body Memory Quirks

(EDITING NOTE: Sorry about the run-together editing fail on this post; I’ve tried a couple of times to fix it and can’t seem to figure it out at the moment, and have run out of chemo-patience to keep trying at the moment.  enjoy the post anyway and I’ll try to make it prettier tomorrow.)

One of the repeated lessons of cancer (of course it can also be learned elsewhere) is how impactual and overwhelming the body’s memory can be.  Apparently according to the Urban Dictionary, the phrase “body memory” is often used to imply repressed memories of physical abuse, but that’s never been how I use or even conceive of the phrase.

This is not to deny that sometimes, some kinds of touch can cue legitimate, real memories. However, to infer abuse from physical symptoms in this way is utterly invalid, as is the inference that conscious, recallable memories can be stored in muscle tissue.
That last phrase is the part I think I disagree with, based on personal experience, though I concede that there could simply be a better or different phrase to describe the phenomenon to which I refer.  (Or more likely, a part of the brain that runs so deeply it never shuts off even at densest sedation.)
Last year, for example, I recall the first day coming home after the mastectomy surgery, where there’s no possibility of actual, full-night’s sleep, sitting propped up with pillows all around with my mind in a twilight state.  These strange images and feelings of sharp lines being drawn across my mid-chest, and dark shadowy forms looming over me kept recurring.  It wasn’t at all like a normal “dream”, and at some point in some story I’m sure I’ll try to better describe it to delineate the difference.  It very much felt as even though my mind was under general anaesthesia, my body was remembering the experience of people standing around me cutting me open and removing pieces of my body — which was indeed what was happening at the time.
This time around, I find that even though my mind is certainly ready to go home, be with my family (including new baby!), and continue my LIVING, non-hospital life with joy in every day and every breath, my body experiences a hitch of panicked feeling when trying to think about the process.  This totally feels like it’s happening because my last memories of being at my home are of being partially paralyzed — stuck in the kitchen, unable to move my leg unless I was physically picking it up, crying and terrified with no help and no way to fix it, (TMI WARNING AHEAD) wetting myself because I couldn’t get to the restroom because I was literally unable to move my left leg forward no matter how hard my brain sent the signal to my body.
And of course I know that won’t happen this time.  The reason for the paralysation is literally no longer there (the culpable tumor that was pressing on my spinal cord is according to the doctor “gone gone gone!”); I’ve been walking in the hospital around my room for weeks now without assistance (from people; I’ll be using a cane and walker for a while to come).  I’ve been working with physical therapists while here to relearn what proper movement and alignment feels like.  I’ll continue that work when out.  We have live-in help lined up to make sure that in a sudden resurgence of worst case scenario (that won’t happen because of regular scans and constant work and vigilance) I won’t be stuck with no help.
And still there’s that hitch moment, that brief flash of panic, that seems to come from the body itself, its own memory of what happened, overriding any rational thought or mind memory.  Of course I’m talking about it in therapy sessions, and working through it, and it won’t stop me or slow me down any more than the rest of this has, and less than most of the bad things slowing me down.
Life is a strange, strange thing.  Does anyone else out there have their own “body memory” stories to tell?

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Jul 16 2011

Rub the Head for Health

While I haven’t developed too many ritual-based routines during this second go-round at cancer battling, since I had to lose my hair at least one has developed.  I think it may have started between me and my son, The Kid (who should probably be renamed now that he’s The Teen, I’ll ask him), but I find it amusing that even my oncologist is now doing it since as he said, “hey it’s working so far”.  So when you’re saying goodbye after a visit with me, don’t forget to give my bald head a quick rub for good health!  Emotional adjustments like these seem to matter more than one might think on the healing road…

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Jul 06 2011

When babies attack

Not really, the baby is great!  I’ve been promising a baby post, however, and so I figured that title was a good attention-getter.

We have been incredibly fortunate to get a baby with a personality that nearly perfectly compliments the other much more difficult circumstances we’ve been having to deal with, especially the cancer.  In her first three months, she has been consistently the calmest, most content, peaceful, quiet, and happy baby I’ve ever met.  I’d write myself off as one of those parents who can say no wrong about their darling little angels, except this feedback is the same that we consistently receive from everyone else who meets her as well.  Not to mention that she’s an amazingly gorgeous baby; the nurses all find excuses to visit when she’s here.  Even the wonderful and skilled hospital pediatrician in charge of our girl’s first few days of life, Dr. Kent, found reasons to stop by and get some visit time outside of the necessary check-ups.  (She was also one of the first people to encourage me to keep blogging about my experiences, and I thank her for that!)

It’s only been in the last couple of weeks that the baby has even started to have fussy periods regularly as her brain develops more complex needs for expression before the rest of her can keep up.  This is a fascinating process to watch, even if I’m not getting to see it every day like I’d prefer.

We couldn’t have survived the last month of taking care of her without my awesome mother, who’s been carting her home each week, making sure her needs are met, and bringing her back each week for visit and assistance time.  There aren’t thank-yous large enough to cover what Mom has been doing for us on this, but try to imagine them anyway.  Mom confirms we have the world’s best behaved baby, and is having a fun though exhausting time.  It’s also hilarious to look at old pictures of me and see how much she looks like I did at her age — there are a few pics where we look almost like twins!

As we get closer to me being able to go home (and more on that in other posts), we’re looking for more full-time/live-in help for both me and Wednesday (our daughter) and have posted an ad to that effect various places, so if you know someone in the Austin area good with cancer patients, infants, meal prep, errands, and other such goodness, send them a notice our way.  And to wrap up, here’s the story of Wednesday’s nickname (and middle name) for your entertainment…

While the little larvae was growing inside me (and unfortunately triggering the estrogen surge that potentially caused the metastatic breast cancer — it had been mis-diagnosed as non-estrogen-receptor positive tumors last year), we wanted to call it something while we didn’t have an actual name picked out.  As far as television families go, The (original) Addams Family is frankly one of the most loving and well-adjusted ones I’ve seen depicted (seriously, think about it for a few minutes and you’ll see my point — feel free to discuss it in the comments!)  So we figured we’d call it after whichever Addams kid it was gendered until we had time to find a better name, and so Wednesday she became once we knew it was a girl.

Around the sixth month or so, my husband mentioned to me that he actually sort of liked Wednesday as a name.  I laughed and agreed that I liked it too, but said that it was probably just a bit too odd to hang on her as a first name.  I pointed out that we could totally keep it as a nickname, or even a middle name, and we continued slowly winnowing down a list of other more suitable first names. (We thought we had three more months to decide at that point, of course, so weren’t in much of a hurry.)

Thankfully by the time things had gotten really bad pain-wise and we suspected something besides being pregnant was wrong with me, we had narrowed the list of possible actual names to a manageable page of choices.  We were still quite irrationally attached to Wednesday as a name, though, and so I suggested we test out the names to see how well they fit with “Wednesday” as a middle name (since the option to keep it as a nickname was always available regardless).

Then the pain got so bad that we had no choice but to take me into the hospital (the first time around) and find out what was wrong. (At this point we still mostly thought it was something structural since it was so much more painful than the first round of cancer had been and since “hip pain” happens to many pregnant women — though I knew in my heart that hip pain that bad had to be something else, or at least something more than just pregnant complaints.)

They did the MRI and found the hip tumor (along with several of the other tumors — they found more later with other scans once she was birthed) and suddenly the message changed from “we’ll have to wait a couple more weeks to term” to “we have to get this baby out and deal with these tumors”.  Since she was already at 36 weeks she was viable and we could reasonably hope that she’d developed enough that she wouldn’t have too many health problems being a month early.  That Tuesday evening we spent discussing the options of vaginal vs c-section birth given the incomplete information we had, and were going to wait until the morning to consult with the oncologist assigned to the case before making a final decision. (Dr. Carlos Rubin de Celis, best oncologist ever ever ever, seriously if you’re in the Austin area and need one he is amazingly skilled as well as compassionate, if I had to move away I would commute back to keep him as my doctor I’m that pleased with his abilities.)

At ten minutes to midnight, I coughed twice and my water broke, gushing in a veritable flood for what felt like half an hour as our darling daughter chose to help our decision along herself and no more of this dilly-dallying about.  And at 7:08 am, on a Wednesday, she was born.  Given that, and all the rest of the events, we felt that was the perfect middle name for her and quickly picked from the last three choices we’d narrowed down for the rest of her name.

Several family members and friends still call her by that, which we have no problem with as it is indeed one of her names, and we’re fond of the story behind it.  When she gets old enough she’ll be perfectly capable of expressing her own preferences in that regard.  Given her mouthful of a moniker, she has over half-a-dozen options for names and nicknames she can go by and I’m looking forward to seeing how she makes (and changes) that decision throughout her developmental years, as I believe it’s good for a kid to have a name they can get creative with in self-identity.  We also went with the “Nielsen Hayden” option of two un-hyphenated last names, and both the birth certificate and the SSA office did it correctly, surprisingly enough!

She was crying with full-powered lungs as she was removed from the uterus by c-section, and had only a bit of jaundice to deal with for 1.33 days while she was with me in the hospital, and is otherwise one of the healthiest, happiest, and prettiest babies you’ll meet.  I look forward daily to seeing how we’ll change each other’s lives by our mutual existences.

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