seen better days

The day before yesterday, I was discharged from Lutheran Medical Center, after a 5 day stay.  Didn't go to Maimonides as I usually do, but the EMS guy who drove the ambulance said it was crazy busy there.
Went in mainly because of my breathing, and generally was having a lot of pain.
Didn't really recover there... I am wheezing badly still when I walk a bit.  Got several different inhalers prescribed, and just hope they start helping.
A palliative care team saw me, and after much conversation we all agreed on treatment with Methadone started at a very light dose of 10mg twice a day.   It was soon changed to 10mg 3X a day, but they don't send you home with it, and I need to see a palliative care team at the cancer center in order to get it.  Hoping I can get there next week.  Oxycodone 20mg every 4 hours continues with everything.
My legs are very tingly weak tight and numbish.  I fell in the early morning hours of the day I was discharged after getting out of bed to  use the bathroom.  Just couldn't support myself.  Hit my head against my room mate's bed, and had to get a CAT scan (negative).
So, upon discharge I still didn't have great breathing capacity....had not ambulated at all during my stay, except to use the bathroom; had a fall. and could barely walk.
Signed DNR (do not resuscitate) papers when I was in there.  After much discussion of possible outcomes, it seemed the thing to do.
Came home to my modem on the fritz and no internet access (have since come to evie's to stay for at least the night).
And Trump is president-elect, the ultimate horror.
And so it goes...

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.

pain

The pain I have been experiencing in my legs has been the worst ever.  I'm not too sure what the hell this is all about, but it is heads and tails above the bad pain I've had in my abdomen/chest after the operations.  Wondering if it is related to the bone metastasis... I really don't know.
I went about five days with no pain meds, but finally made it to the pain management doctor today.  Evie had to come with me, because I wasn't even sure I could walk alone.
The Percocet took the edge off, but it didn't last long enough.  Should wait eight hours between doses, but after four or five hours I was back in a state of misery.
This is not what I'd like to be writing about, but it is what it is, ya know?
Tomorrow I see my medical oncologist, Dr. Burdette-Radoux.  She'll have the results of my bone biopsy, and will outline my treatment plan for now.
Afterwards, I'll probably meet with the social worker at the cancer center to see if I can get some kind of help with paying for medications and such.  Maybe I can get a Medicaid spend-down, I don't really know.  I do know that it all too hard for me to handle financially.  It is truly a choice between food and meds.  If it wasn't for Evie helping me out, I have no idea what I'd do.
I can't help but wonder how long I have to live with this disease.  And in what shape?  I pray for better days to come.
However much I miss her, I am glad my mother is not around to witness what I am going through.  It would have hurt her so bad.  Nevertheless, I miss her gentle touch, and soothing ways.

those waking hours

I wake, typically, with a sudden jolt of pain in the middle of the night.  Familiar pain, unwelcome, nonetheless.  So I get up to eat a pain pill, knowing I will spend at least a couple of hours slipping closer to normalcy.
Yesterday I visisted at Melissa's, with Tree.   
Had the pleasure of observing Logan's reading skills, which duly impressed me.  He says Math is his favorite subject.  I told him it was my worst.  He is just the sweetest boy, I can hardly explain.  Such a gift.

Loving his first pet, Linny, the Guinea Pig

The weather was, and has been, damp and cold.  It sinks right in your bones, and aches you up.  Thinking I need to get some Tiger Balm.  I prefer the White, but that is a little harder to find.  I like white flower oil, too, but I'd probably need to go to Chinatown to get that.  Actually will be in Brooklyn's Little Chinatown next week when I go to the Cancer Center to see my oncologist.  Store fronts, though, are usually in Chinese, and it's hard to navigate.  Not sure what each store actually sells, except for the food stuffs, mostly.

Had a pleasant surprise last night.  I was chatting with my 2nd cousin, Martin, on Facebook.  Martin is my mother's nephew, and somewhat of an ancestry hound, who found my mother several years ago.  My mom, more or less, orphaned by 5 or 6, when she had already lost both parents, has had many mysterious parts to her life.  In another country, Guyana, she had 6 half brothers and sisters.

It has been interesting to learn things from Martin, who has done (and is still doing) many years of rigorous research.

Anyway, tonight I mentioned how I have never even seen a picture of my maternal grandparents.  I doubt I'll ever get to see my Greek grandfather, Peter Nicholas, but last night Martin graced me with a photo of my Portugese grandmother, Mary Serrao (1882-1931), and here she is...

I  think she is rather stunning and modern in her look.  She has the same pin straight hair as my mom had.  I see my mother in her face.  That twinkling in the eyes.  I'm so happy to finally see her!

and so on

So, its been a month since getting my tram-flap reversal surgery.  I am still experiencing pain, though it has been somewhat different in nature.  Have had expected post-operative pain.  The old pain, which I've had for the past one+ year, has dissipated a bit, but not entirely.  I am still taking pain medication, and often find myself counting the hours to when I can take another dose.  That's not too good, I guess.
I had the drains in for a couple of weeks before they were pulled, but then ended up having fluid build up under my skin, and had to have it aspirated with a needle.  Just this past wednesday, my plastic surgeon actually reinserted a drain on the right side, because the build up was too great.  Also, he wrapped my chest tightly with ace bandages to inhibit the fluids from having anywhere to build up.  This has been super uncomfortable for me, and even makes it hard to breathe.  I'm hating it.
Much of the time I am just feeling worn out and weak.  When I am outside walking, I thank God there are benches in the neighborhood where I can sit and rest, because sometimes it feels like I will just pass out if I don't.
I do think this surgery has improved my situation some, even though I've been feeling like crap anyway.  Not sure that makes any sense, but it's how I feel.
My breathing has been especially poor.  I find myself using the rescue inhaler several times throughout the day, most especially just after sleeping, when I think the congestion really builds up in my lungs.
So, it hasn't really been the best of times, but I still hold out some hope.
I'm not sure when or if I will ever feel fully well again.  Its been so long now.
Its been two and a half years since I was first diagnosed with breast cancer.  The whole time has been filled with surgeries, treatments, and pain.  Enough already!

So many roads to recovery

Yesterday I underwent surgery to reverse the tram-flap breast reconstruction which has caused me so much pain since I had it done in January 2015.  It was ambulatory surgery lasting only two hours, but since I have diminished lung compacity, and experienced acute respiratory failure after the original reconstruction, I worried terribly that I'd wake up intubated again, and have to be admitted.  To my great relief, everything went well, and I woke with no tube, and was able to be discharged a couple of hours later.  Yay!
My sister, of course, accompanied me, waited for me, and then took me to dinner before going home.  She is a great source of strength for me, and I am so thankful.
Had I just had my double mastectomy back in October 2013, I would have have been left basically flat-chested and scarred.  As it is, I had the reconstruction AND basically the deconstruction, leaving me quite a bit more impacted.  It is only the day after the operation, so I'm hoping it will improve some once I've healed a bit, but for the most part I think I will remain fairly deformed.  Quite dented in some places, protruding in others.  Ugh.
I am in qutie a bit of new pain from being cut open again.  Extremely sore and tight.  To be expected for a while, I guess.  It will take a while before I can adequately assess the overall pain experience.
Its been a long hard road since I was first diagnosed with breast cancer two and a half years ago.  I hope this is the last of my operations, and that the pain will dissapate or at least be tolerable.  That is my primary focus.
The range of motion in my arms has lessened even more with this procedure.  After some recovery time, when I am able to do light exercising of my limbs, this may improve.
I've had good moral and emotional support from my friends and family, and am very lucky in that respect.
The visual deformity will take some time to overcome, emotionally, mentally, and even spiritually.  It is, though, secondary, to the aspect of pain which has been the most debilitating during this past year or so.  I just have to be gentle to myself, and try to accept, with grace, what has transpired.
Of course I have drains in place again... two of them, and am really hoping they can be removed after a couple of weeks, and not have to remain for the six to eight weeks I had them after the first two operations. They are just an annoyance, and pretty disgusting to have to deal with.
Having lost my mom, just shortly after the reconstruction last year, has been one of the hardest things to deal with.  There is something inside of me that just so needs to share with her what I have been going through.  Of course I do "talk" to her, and trust that her and my dad are watching over me.
On another note, Spring arrives shortly, and with it we are expecting another snow storm here in New York City. Predictions are ranging from a possible  eight inches, though some readings say it may just move out to sea.  Personally, I'm hoping for the snow, as I'm not exactly ready to say good-bye to winter just yet. I'm really not that impacted by it, since I'm mostly staying home anyway.  I kind of like the cozy quiet feel of being snowed in for a little while.
So, I am on the road to recovery yet again.  Going to try my best to regain some normality to my life once and for all.

What's been happening

As I mentioned in my last update, I was unable to get my pain meds because of the exhoritant cost due to a large deductible.  The crushing pain came back with a vengence, and I suffered for five days before calling an ambulance to take me to the emergency room.
I sat in the ER for four arduous hours before being seen.  I cried several times during the wait, just unable to hold back the tears.
The doctor gave me two percocets, that being the cheapest pain med around, and a prescription for ten more.
They let me lay down on a gurney for about fifteen minutes, and then the doctor came along with discharge papers.
I was barely out of pain by the time I left the hospital.
Walked (so slowly) a couple of blocks to find an ATM, as I had no money on me, and needed to take a car service home.
The car dropped me off at my pharmacy, where I had the script filled, and then went home to go to bed.
Days later, I went to see my pain management doctor, and asked him to please prescribe me some percocet for the pain.  He was very nasty, and literally yelled at me, saying he doesn't prescribe those kinds of narcotic pain killers.
Now, here I was, in pain again, as the ER prescription had run out.
The doctor said I'd have to see somebody else if I wanted the percocet, and he referred me to another pain management doctor a few blocks away.
This new doctor wanted to give me only two pills a day, which was a far cry from what I needed for round the clock relief.  After some pleading, he agreed to prescribe three a day.
I know there is great controversy surrounding addiction to pain medications, and doctors are afraid of prescribing drugs like percocet.  This sure doesn't help you when you are suffering from debilitating pain.
When I went to get my prescription filled, I thought it would cost maybe twenty or thirty dollars, percocet being a fairly cheap drug.  Because of my huge deductible, the cost was $72.  I couldn't believe it.  Luckily, my pharmacy lets me charge things till the next month,which is what I had to do.
The three pills a day weren't enough to keep me out of pain till the next dose was due, so I spent at least an hour or two back in pain before I could take another pill.
Once the pain comes back it is harder to get relief again.  It's very frustrating.
The side effects from this drug are hard to deal with.  Lots of sleep is necessary because it knocks you out.  Then there is the horror of your bowels seizing up, which happened to me for the first eleven days.  Stool softeners and laxatives caused massive stomach cramping, so it seemed if I didn't have one type of pain, I had another.
Give me a break already!!
I haven't been out of the house at all, in I don't know how long.  We had a massive snow storm, about 27 inches, but unfortunately I didn't even go out to experience it a little bit.
I need to see my plastic surgeon again, to schedule the reversal of the reconstruction, but have to wait for the beginning of the month, when I have some money to pay for transportation and co-pays.  Same old story.
Right now I am hungry, and so hoping my social security check comes in early, so I can buy some food.  If it doesn't come in today (friday), I will have to wait until monday.  Ugh.
I know this is all pretty boring to read, assuming you got this far.  Sorry about that, but I do want to keep an account of what's happening in my life since getting breast cancer in 2013.
Maybe someday in the future I will be beyond this misery, and I can look back on these passages with a healthy detachment.

personal update 2016

This is my first time here this year, so I want to wish everyone a great year, with good health and much happiness.

Things have been much the same with being in pain a good deal of the time.  I saw my plastic surgeon yesterday, and he said he could reverse the tram flap surgery in hopes this would relieve my pain.  He would also cut out a lot of the fat necrosis.

I don't know if this will actually help, and relieve me of pain, but I have to hope it will.

It's a not an overly long surgery, he said.  About two hours, and I would be in and out on the same day.  I'd have a couple of drains to deal with; not like I don't know what that's all about. Haven't set a date  yet.

Of course, this will leave me flat-chested and duly scarred.  After all I've been through.  Oh fucking well.

The insurance plan I had last year was cancelled at the end of the year, and I had to get a different one.   Lots more co-pays now for some reason, and the drug coverage sucks with a huge deductible.  I just went to get my pain medication filled, and they told me the cost was $380.  Needless to say, I can't get my medication.   It's not like the meds help a great deal, but they do something sometimes.  Now I am screwed.

So, that's all the mundane crap of my life.

I am just needing to start anew, pain free.  I can't go through another year like the last one.

watercolors

the pain, dissapating

cherry pie

blue diesel

shapes and color

trudge uphill, slide back, trudge up again, 2014 in 10 lines

The days go by in chaotic manner

Sleeping in shifts, hours at a time,

waking hungry at 4am, sleepy at 6.

Pain rides from my chest to my toes

and everywhere in between

I wait for narcotic scripts in the mail

and face the snow to go fill them.

Relief comes, but the mind still wanders

to things it should not.

Such is the nature of the beast.