Friday, April 15, 2016

Well, so much for the idea of walking and getting out of the house and in the sunshine.  I went for a short...very short walk yesterday.  Big mistake.

I'm back in my big orthopedic boot and have limited walking.  This is just so frustrating.  I was hoping to get to enjoy the nice weather for once.  After all, it's been years since I've gotten to do that.

Color me very, very discouraged.

Thursday, April 14, 2016

It's been a couple of months since I posted anything; things have been status quo for a while, except for the proverbial sinus infections.

Yesterday was a long day. My parents and I went to Fox Chase Cancer Center in the morning, then went straight from there to Rothman Institute to see the orthopedic surgeon.  We were all exhausted when we got home!

Things were good with the gyn oncologist.  I had blood work done (CA-125), and it came back at 3.7, which is great.  I have to go for a breast MRI before I see the oncologist in July.

The doctor at Rothman said my ankle had still not healed completely, but he thought it would be OK for me to start walking like like a normal person.  This afternoon I went for a short walk with my mother.  It was the first time I was out for a walk in over two, maybe three years.

So, this weekend I will be shopping for shoes...another thing I haven't gotten to do in a long, long time.


Thursday, February 25, 2016

It's been a while since I posted, so I thought I would do a bit of an update.

My lymphedema has come back with a vengeance, so I'm going back to therapy to try to get it under control.  It's a real balancing act.  The meds that I take to get rid of the fluid throw my electrolytes off; the other week I got a call from the cardiologist because my potassium was 2.5...way too low.  He wanted to admit me to the hospital, but I talk him into letting me take extra potassium and magnesium at hime to bring it back up.

It has just gotten so frustrating: running from doctor to doctor, taking all these meds.  It feels like my life just revolves around doctors' appointments and pharmacies.

My pain has gotten much worse.  On Tuesday I went to a palliative care doctor.  She made some adjustments with my pain meds.  I hope it works; the pain just grinds me down.

Some days it really gets overwhelming.

Saturday, January 9, 2016

Haven't been posting here lately because things have been status quo.

On Wed. I went to the oncologist.  My CA-125 was good, but she wants me to have a CT scan because I've been having abdominal pain.

Then it was off to Rothman Institute to see the orthopedic doctor.  Things were looking good with the surgery, so now I'm allowed to start walking.  It's painful, but it feels good to be able to stand up and walk around.

All in all, it was a good day, but a long and tiring one.  I spent the next two days sleeping.

It seems that life can go back to normal for now.  I could do with a bit of boring for a while.

Friday, November 20, 2015

Here are some pictures of my foot post-op:

Pretty, isn't it?

Wednesday, November 11, 2015

Home from the hospital, and I am so, so glad.  

I remember waking up in the PACU in searing pain.  Every other time with the surgeries on my L leg, I woke up with a catheter and a PCA.  This time?  No PCA, no catheter.  By the time I got upstairs I was crying non-stop, I was in that much pain.  I kept begging them to do something about the PCA, but no one would listen to me.  Believe it or not, they wanted me to get OOB and sit on the BSC.  I refused.

That night was horrible; I couldn't rest because the pain was relentless.  The best way to describe it was non-stop pain in my heel that felt like throbbing, electric jolts;  burning as if my leg were in fire;  and, feeling as if a bunch of rats were gnawing on my heel.

The next morning was no better.  A nurse practitioner came in, and when I asked her about a PCA she said, "We don't do PCAs."  She had absolutely no compassion whatsoever.  She did end up relenting when it came to the catheter, and by mid-morning I at least had a catheter.  When it came to the PCA though, she couldn't have cared less.

The first day after surgery was even worse than when I woke up after surgery.  I am on long acting pain medications due to cancer and neuropathy.  For some reason, they chose to not restart them, so I was going into withdrawal on top of everything else.

Finally around 4:00pm, my father called the surgeon's office, and by 6:00pm I had a PCA.  I finally was able to get the pain under control and do all of the things they want you to do  post-op: cough and deep breathe, sit out of bed in a chair, eat, drink, etc.

The next morning the foley was taken out, then I got my long-acting pain medication.  Around 12:00pm the PCA was D/C, and I was comfortable from thereafter.

On Friday morning, a nurse practitioner from the palliative care and hospice dept. came in to talk to me.  She said she had heard about what happened to me, and she apologized over and over.  She said I should never have been treated that way.  I told her that I was concerned because I will be having surgery again.  She told me that if I need surgery again to give her a call, and she will make sure I am on their list of patients to follow.

This has always been a great hospital, but that nurse practitioner from the pain mgmt. dept. was ridiculous.  What I really don't get is why she wouldn't restart my home meds; if she wasn't going to manage my pain appropriately, then at least let me have what I take at home.  I'm not big on reporting people, but I am going to say something when I see my ortho.  If I were absolutely positive I had her name right, I would go to her manager, too.

I am now a firm believer in having a family member at your bedside when you are hospitalized.  My parents were there a good part of the day; if they hadn't been, I believe I wouldn't have gotten that PCA.

What happened to being an advocate for your patient?  With the exception of one nurse, most of them just shrugged their shoulders as if they were helpless.  What happened to going up the chain of command?  Certainly that NP was not at the very top of the food chain.  I know what I would have done if the situation would have been reversed.  How can I know?  Because I've done it.  How you could just stand idly by while your patient is crying in pain.  Do they just not care anymore?

What a sad state of affairs we've come to!  



Monday, November 2, 2015

It's Deja Vu All Over Again..

Well, tomorrow is it.  Another surgery.  I'm going to be having a tibiotalocalcaneal fusion of the right ankle, the same procedure I had on the left ankle.  If you want to have an idea of what the surgery looks like, here it is on youtube.  (Scroll to the three minute mark if the video starts with power point presentation.  I tried to edit that out.)

The surgery will require me to be under house arrest, I mean, total non-weight bearing status, for two months.  It's not like I haven't done this before, but I'm getting tired of hospitals, surgeries, and pain.

For everyone who has been supportive, I thank you.  This has been a long road, and there is still another surgery to go.  Bear with me...