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...

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.

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.

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.

Dread the Spread

For the past month I've had a very bad time with my asthma and/or COPD.  I depleted my rescue inhaler in les than 3 weeks, and the insurance denies an early refill, leaving me with no relief, and an inability to get even from one room to another without nearly passing out from shortness of breath.
On Monday, the 25th of April, it had reached critical peak, and after speaking to my PCP, I called an ambulance and went to the ER.  What followed was nebulizer treatments, steroids, O2, etc., and 29 hours in the ER before being able to secure a bed and be admitted.
Because my breathing was not improved with treatments, it was decided they'd do a CAT scan of my lungs to check for a possible blood clot, since I had recently had additional surgery, and it was indeed a possibility.
I was still in the ER at this time... I had been there 15 hours at this point, when a new doctor came and started discussing my history of breast cancer.
Then, came the shock of my life.  The CAT scan had revealed that the cancer had metastasized to the lymphangatic system in my abdomen, and to my bones -- specifically to my thoracic vertebrae. 
The doctor apologized for giving me this lousy news while alone in the ER.
I immediately secured a phone and called my sister (at 3am), who got so scared at the phone ringing at that time that she though someone was calling to say I had died.
I just couldn't tolerate being alone for too long with this devastating news.
Later on, Melissa came by as well, while another doctor was talking to me.  I saw her but knew I couldn't acknowledge her presence just yet, or both of us would break down.  After the doc left, I opened my arms to receive her, and we both held each other, shedding many tears.  It kills me to see her cry, and even now, my tears flow just thinking about it.  Our love in deep and unique.  She truly feels me.
Anyhow, after 29 long hours in the ER, I finally got a bed on the floor, which is where I've been now for 3 days.  Writing this on paper until I can transcribe it to my computer.
Earlier this afternoon, I had another CAT scan of my addomen and pelvis, and a full body bone scan.  Those results will probably come tomorrow.
The breathing problem is very slowly improving, and is, in most part, a separate issue from the cancer developments.
Some of the oncologists have said I will probably have to undergo additonaly chemo and radiation.  Right now I'm not too certain of my prognosis.  The oncology team will talk to me some more tomorrow.
I hope I can go home soon.

Thursday now.

Still in hospitaol, and not leaving today.  Been running a temp all night.  Had blood cultures done this a.m.  Results tomorrow.  Still pretty hard to breathe.

CAT scan showed cancer in some abdominal lymph nodes, and lung as well.  It's hard to comprehend all the info sometimes.  Still waiting to hear on the bone scan results.

In any event, I will need either a lung or bone biopsy, I believe... haven't heard which just yet.  Neither sounds like fun.

My veins are a disaster, and I've endured literally hours of being poked, trying to get IV access, draw blood, etc.  Don't know if I can handle one more attempt at this, truthfully.

So... some updated info.  My lungs have some small specks (7mm) of metastasis.  Also, my ribs and spine have been affected.  Tomorrow morning I will be going for a bone biopsy, which is a painful procedure that I certainly don't look forward to at all.

Friday, 4/29/16

So, I was NPO (nothing by mouth) from midnight last night, in preparation for the bone biopsy come morning

Half expected to be taken by 9am for the biopsy.  Breakfast time came and went without me partaking.  Then, lunch came and went.

By around 2pm I learned that the interventional radiology department was backed up with a couple of emergency cases, but that I could expect to get my biopsy by 3.  Moments later it was decided that because my blood pressure had been running high, the procedure would be cancelled, perhaps until Sunday.  Maimo is a Jewish institution, so nothing is done on Saturdays, but Sundays are an option.

I would be getting either a rib or spinal biopsy, both painful procedures, each with its own risks.  The rib biopsy risk is mainly pneum-thorax, which would result in a chest tube being placed.  A spinal biopsy is a bit more ominous in terms of risk, as paralysis can result.  Seems they will opt for the rib...let's hope so.

Saw my friends Amelia and Jeff last night.  That was a real good visit.  Besides love and good conversation, they brought me a lovely miniature white orchid plant, and a pendant of a Hindu goddess, who is a slayer of obstacles, to aide in my healing.

My sister came again today.  She is running around much too much, though, and I think it's time she stayed home and got some rest.

Also, Alice, my therapist from the mental health center, came by to visit , bringing good tidings from many folks there.

I haven't seen Evie, but I know she is right in my corner, praying for me, and she is taking care of my cat, Morrison, at home.  I miss hanging out with her.

Saw my medical oncologist, Dr Burdette-Radoux, who assures me there are good treatments to be had for what I am going through. 

Sounds like I will be able to be treated with oral medications, and not necessarily more chemo/radiation.  That's really good to hear. 

Everything will be more definitive after getting the bone biopsy.

I miss my computer, and could use a nice warm shower, but I am mostly comfortable here.  Wishing desperately for a cigarette, and will no doubt partake once I am discharged.  A good fat joint will be in order, as well.

So, I've got another 3 days here, at least, and maybe even more, depending how the biopsy goes.  My breathing status is much improved, and getting better every day

4am Saturday morning

Having a hard time sleeping through the night, despite a mix of morphine and Xanax around midnight.  Really want a cigarette.

Saturday night

I won't be getting the biopsy done until Monday, because the pathologist needs to be aournd.  Hopefully this doesn't extend the stay any, and I can go home by Tuesday.  

Evie wants me to stay with her when I am discharged, and that sounds good to me.  She's coming to see me tomorrow, which is great.  She'll be bringing my Surface Pro2 with her, so I'll finally be able to go online after so long away.

Well, as you can see, I am online again.  So good to see Evie, and she spent a few hours here.

I know this was a ridiculous amount to read, not sure many of you made it through, but as always, I like to keep an account of what is going on in my life.

I think I am doing fairly well on an emotional/mental and spiritual level, and will continue to try to do so.

Thank you all for your prayers and good thoughts.