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Wednesday, July 13, 2016

be it ever so humble

There's no place like home.

Was finally discharged from the hospital tonight after thirteen long and trying days.

This certainly was an unexpected turn of events in my life.  Makes one reflect upon the impermanence of it all, and how things can change so suddenly, on a dime.

Having stage 4 metastatic breast cancer is no joke.  One's life is now so consumed by constant treatment of the disease, and even treatments of the treatments, if you can fathom that.  Test this, test that, monitor this, monitor that.  Deal with the pain.  Deal with not being at all what you once were.

Things are simply different.... I'm different, and I perceive a different world/reality. 

It is a very lonesome reality.  No matter what support you may have, this is essentially a very private journey.

Sunday, July 10, 2016

ongoing

These hospital admissions go from one thing to another.   I am still here.  My breathing improved, but dangerously low calcium levels caused EKG changes, causing me to stay.
There is an injection I get, once a month, at the cancer center, to help with the bone loss due to the bone metastasis.  This seems to be what caused the calcium disruption.
I had to have a central PICC line placed in my neck the other day for needed IV infusions, because I have absolutely no viable IV access in my arm. Being one arm is compromised by lymphedema, and unable to be used, I had half the access to begin with.
Placing the PICC line was painful, but necessary.
On top of all this, I haven't been able to move my bowels in eleven days, and they won't discharge me until that happens.  I have received just about every drug and procedure you could think of to facilitate this, but to no avail.  Tomorrow they will introduce a rectal tube to see if that helps.  It's really out of line now.
One night, the cramping pain became so severe that my blood pressure went out of control, going over 202/120.  Vomited throughout the night, and was just so miserable.
Damn, I just want to go home, and be done with this madness.

Monday, July 4, 2016

another hospital admission

Another episode with me admitted to the hospital, for COPD exacerbation.

Last week I had done an Albuterol Sulfate nebulizer treatment at home, looking for some relief from labored breathing.   On the contrary, what ensued was one of the worst episodes of shortness of breath that I've ever experienced.   Barely able to take in a breath, I felt sure I could die at any second, or at the very least, have a heart attack.

I was able to type out a couple of words on the computer to get Evie to come over asap, and just be with me.  When I was able to draw in a breath, I used my rescue inhaler, and my rapid fire breathing started to ease up.  Weird thing is, the rescue inhaler is also albuterol, but yields a totally different effect.

Unable to walk even 5-10 feet without losing my breath, I spent the next day and night in bed, putting off going to the ER, but called 911 by Thursday, June 30th, and was taken by ambulance to Maimonides Medical Center.

After spending 8 hours in the emergency room, I was admitted to an Oncology floor for observation and treatment.  Was really thankful that it wasn't like my last trip to the ER, when I spent 29 hours there before getting a bed on a medical floor.

They treated me with another nebulizer treatment... this time something other than the albuterol, but I can't recall the name of what it was.  Anyway, I had a bad response again...  this time having audible wheezing, and painful chest tightness.   I don't know what it is about these nebulizer treatments that have me reacting so poorly, but I now refuse them, and won't ever do another one.  Only the rescue inhaler works for me.

I'm also being treated with 4+ liters of O2, and IV Steroids, 40 mg., 3X a day.

Tomorrow with be my fifth day here.  I haven't yet tried taking a walk in the hall, but will attempt that.  I've been able to walk to and from the bathroom without losing my breath.  I'm improving slowly, and can maybe be discharged in another day or two.

At one point during my stay, I was asked some sensitive questions about whether I would consent to intubation and/or chest compressions if an emergency requiring that were to arise.  Being the likely alternative to these things would be death, I did agree to both.  They said the chances of being extubated would be slim, and a trach would probably have to be done.  That whole conversation bummed the hell out of me, but I knew it had to be discussed.  I'm not exactly ready to consent to death just now, you know?

Pretty sure I will go home with supplemental oxygen this time, and probably continue on a course of oral prednisone.

It has been a pretty scary time, but I am getting through it as best I can.

Some really hot and humid weather is expected to move in very shortly.  That is never good for my breathing, so I will stay quite still and close to the air conditioner.  I have an appointment at the cancer center in three days, but will no doubt have to reschedule that.

My sister, and Melissa and Logan will be going on a short summer vacation soon, and I feel so bad I can't be going with them this time.  I will surely miss that.  I think Logan's Godmother, Kim, will be joining them, too.  Wish I could go, but this just isn't my time.

Hoping I can get back on my feet real soon.


Friday, June 17, 2016

summertime

It is not yet summer, but I have been using the air conditioner quite often these days anyway.  I really can't tolerate any level of heat.  It hinders my ability to breathe well, and just puts me in a bad mood.  If I am able to swim in a pool or ocean, then I do not mind it so much, and can even enjoy laying out in the sun, if I know that kind of refreshing relief is nearby.  But, generally speaking, I hate the summertime.
The other seasons are wonderful; each in their own way.
There is that welcome relief of autumn, when the weather beckons you to put on a jacket or sweatshirt.  The air is dry and crisp, and there is that lovely display of colorful trees,  and dried leaves crunching under your footsteps.
Winter is most spectacular with its howling winds, and flurries of snow.  A fierce blizzard can keep you holed up inside, but there is nothing like the peaceful silence of an insulating snowfall.
Spring is welcoming with its newly blossomed crocus, and the sprouting of pale green buds on the trees.
I enjoy living in a place where all four seasons are available to me.  Enjoying three out of the four of them isn't too bad.
Despite my dislike of summer, I have probably had some of my best times during that season, since it is typically vacation time.
Hiking in the mountains of Cuyamaca (in San Diego), or camping out in upstate New York.  Going cross country with Tree and Melis, and enjoying oh so many beach days in my youth.
I went to Finland (Lapland) during the spring/summer, and experienced sunlight virtually all day and night during that time.  Wish I could've experienced it during the dark days of winter, though.
I was just looking at some pictures I took this past winter, after a snowfall.  Those days cannot come soon enough, if you ask me.

  I have hardly been outside at all this year, especially since April when my breathing became so bad, and body pain increased.  It's a good thing I'm such a home body type, or I'd surely be going stir crazy by now.  I would like to take a nice walk, but just going from one room to another can render me short of breath.  I have to be careful of that, lest I use up my rescue inhaler before I can get another.
When Melissa was little I would often sing the song, Summertime, to her, in a sort of operatic voice that would just crack her up.  Great song.

Monday, May 30, 2016

down days

I am missing things these days.  Today I missed the annual Memorial Day Weekend bbq at Melissa's place.  A mix of pain and such keeps me at home for the most part.  The chemo drugs have me feeling nauseous much of the time, and I'm unable to eat very much.  Had half a ham sandwich today, which was about all I could tolerate.  Some days I don't want to eat anything at all.  I will probably get some Ensure, or Boost, soon, just to get some nutrition.  Losing weight is nice and all, but not at this cost.

The weather has been quite warm lately.  Not good for my breathing, or for anything else for that matter.  I had hoped to hold off on using the air conditioner, but I truly need to make myself as comfortable as possible, so its been on for a couple of days now.

I haven't even felt well enough to make it across the hall to visit with Evie.

The day before yesterday I had to have an MRI done of my spine.  That whole ordeal took a lot out of me.  They were backed up, and I had to wait for hours before even getting it done.  Had 2 MRI's done... one without contrast, and one with.  A total of nearly an hour and a half inside that noisy tube.  Not fun.  I know my oncologist wants to see if the metastasis is causing any nerve impingement, which might be causing the horrific leg pain I get sometimes.  I don't see her again until the 9th of June, so it will be a while before I learn the results.

I spend a lot of time watching Netflix, and some television if anything good is on.  I don't do much reading because my glasses aren't the best, and I need new ones.  I do some coloring now and then to fill the time.  Very fatigued, so I sleep a lot when I can.  Usually a couple of hours at a time.

I wonder when the radiation treatments will start.  It's going to be very hard to do that five days a week, especially with the summer weather.  Will it help with the pain, I wonder?

I know this is all pretty boring stuff to be reading,  but it's what my life is about right now, so it is what it is.

Monday, May 16, 2016

oral regime begins - technicalities

Just past 9pm on this monday.  I have not slept since saturday, so I'm pretty out of it.  Lots of chest/abdomen tightness pain pressure going on, and breathing is always hard.  Sometimes pain sites change from day to day, or through-out the day, or go on for days.. there's no way you can predict its path.  Rarely is the body still, and at peace.  Sometimes, it is, for a little while at least.
Today I started the oral meds.  Letrozole (Femara) and Ibrance.  The constrast of costs for these two drugs is crazy.  The Letrozole costs maybe a nickel apiece... crazy cheap.  The Ibrance, on the other hand costs close to $100 per pill.  They are meant to work together, the Ibrance specifically enhancing the qualities of the Letrozole.
Leterozole is meant for post-menapausal women with HER2-positive breast cancer.  HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells.  Ibrance is meant to be used with Letrozole.  The effectiveness of Ibrance plus letrozole is based on a study that measured progression-free survival. There is an ongoing study to find out how Ibrance works in combination with letrozole over a longer period of time.
Both can have side effects similar to iV chemo infusion.  Ibrance includes more serious effects, with low white blood cell count being the most common, as well as low RBC and platelet counts. Pulmonary embolisms are also common.  Regular testing and treatments for these things will be on-going.
There are at least a dozen other common chemo side-effects, including "unusual" hair thinning or hair loss.  Not too sure why they include the word unusual.
There are many things to watch out for, but I prefer not to "expect" the side-effects, lest they are self-fulfilling. Often, many of these effects will not even show themselves.  Time will tell, and I will be on these drugs for however many years I have ahead of me.

Sunday, May 15, 2016

death and netflix

On the shows at the end of season two of Grace and Frankie, there are these scenes with a dear friend of theirs, called Babe, who is choosing to end her life with dignity, as cancer has taken her over.  She is a nutsy character, play by the inimitable Estelle Parsons.  She has lived an over the top kind of good life, is probably in her 70's, and wants Grace and Frankie (Jane Fonda and Lily Tomlin) to help her on this journey.  Quite an emotional turmoil for the characters.
Now suddenly, there are new story lines that somehow affect me.
I have no ide,a or want,  to end my life, but it makes me wonder.. when does someone possibly come to that cross-roads, if ever?

I know this character was more or less at the top of her game, and wanted to go out in that fashion, but deep inside I really don't get that.  I mean who's to say how long she could've gone on at that level... or maybe not even at that level... so what that it might be less.  If you can't handle it, then so be it...  But to check out?  Just doesn't seem right.
My opinion.
Anyway, enjoying these shows that I find on Netflix every now and then. But it's hard not to binge-watch them, and then you have a long wait till the next season starts.
Sam Waterston and Martin Sheen are also in this one.  They are the ex-husbands of Grace and Frankie, and come out at the beginning of the series, as gay, having been in love with each other forever, and they proceed to live together.
The main characters are all 70-something, give or take, and there are their adult children, who interact regularly.
It's very enjoyable.

Friday, May 13, 2016

good news

I have been approved for the $2,000/month copay for the cancer drug, Ibrance,  I need for one year, then will reapply.  Very relieved.

Thursday, May 12, 2016

just bull-shitting

Today I lashed out in anger on my facebook status.  Just feeling tired of answering this question and that, or being told you gotta do this or that, and do it now.
My sister said my words were harsh, and no doubt wondered if I was referring to her.  Sure, in part, but mostly I know she just really cares.
My therapist, Alice, on the other hand, has begun to irk me.  Maybe I am being harsh in my perception of her, but you know what?  I have some anger, and I need to express it.
In the beginning of our sessions together, she asked, as do all therapists, if I want to have my family privvy to my therapy sessions.  I said no.  That was how I had it with Eleanor for 12 years, and I wanted to continue that way.
So... when Alice calls my sister every time I miss an appointment, it pisses me off.  I never gave permission for that.
I know that maybe what I'm going through now is a "different" situation, but I'm sorry.. I don't want my actions under anybodies scrutiny.
OK, I didn't call to cancel my appointments with Alice or Dr. Normil, today.  My bad.  Nevertheless, I need my own space.
My priorities now, medically, are with Dr. Burdette, and the cancer center.
I may actually have Alice close my case with the mental health center.  I haven't found much benifit from it for a pretty long time now, anyway.
I'm mad because I can't walk very well, and it's scary.  It's all just happening so suddenly.  Maybe it'll change with treatments.
This is all very private, and nobody really has a clue what's going on inside of me.

I'm not saying I'm right. I may even be wrong.  But if mad, angry, pissed, is what I am, then so be it. It's a crazy time, and I need to feel free to express myself.   I don't want to hurt anybody, and I fully expect to be called out if I do.  Don't want anybody to feel they need to walk on eggshells around me.  But let's face it...if ever I was feeling sensitive, this is the time.
I don't particularly like being in the position of needing the care.  I am more used to being the care-giver.  Not quite ready for the complete roll-reversal.

Sometimes I go down the road of "why me"... that's a really stupid one. because why not?  I don't think I'm being cursed because of past misdeeds.  That kind of crap is bull-shit.  Nevertheless, that silly question does pass one's mind.
Oh Shinnah Fast Wolf said that this kind of stuff happens so as to bring about a healing in the family.  But I don't think my small but tight knit family has really been in the need for a healing.  I think we're pretty together in that respect.  Of course, lessons will be learned.  Can't get away without that happening, unless you're completely unconscious.
Well, I guess I just wanted to vent here a little bit more.


addendum:
So I get a call from my therapist this morning saying "I need to close your case."  No good reason why, except that I can't make it to the clinic as much as a need to, but she had said we could connect by phone when needed.. now suddenly not even that.  Wow, nice support, huh?  Fine by me.

Wednesday, May 11, 2016

treatment update

Looks like I will be treated with oral meds (Letrozole and Ibrance), and radiation treatments.
The leg pain is indeed a result of the bone metastasis.
The cancer center is taking over my pain management, thank goodness, so I can take something every four hours instead of every eight.  The meds barely touch this bony pain, but at least it's a little something.  It's possible the radiation treatments will help some with the pain.
My oncologist says she is optimistic that I will do well with the treatments.
Getting an MRI soon to see if there is any nerve impingement.
It's hard to walk, and I'll probably get a walker to help with that.

That's about the size of it.  Just taking it a day at a time.