Tuesday, December 5, 2017

I'd like to give a big shout out to Karen Gallo, DPT @ CPRS Physical Therapy.  She helped me out in a big way a few weeks ago by giving me a pair of Velcro lymphedema wraps for my legs that she had gotten from a sales rep.  This saves me from having to have my legs wrapped with bulky layers of cotton batting and ace wraps, plus I can do them myself.

She sees a lot of patients with lymphedema, so she could have given them to another patient. They aren't cheap by any means.

There is a down side to having these straps.  Now that my edema has been relative lively stable for the last few weeks and I've been able to transition to the straps, that means I don't need to go for lymphedema therapy.  While that would normally be considered a good thing (and it is, for the most part), I will miss really Karen.  Her kindness and compassion have made a lot of bad times better.

I'm glad the swelling in my legs has stabilized, and that I have the Velcro straps to help manage it.  Most of all, I am so very thankful for having met Karen.

Saturday, November 18, 2017

It's Been A Long, Long,...Long Time.

I haven't posted on this blog in a long time.  This past Summer has been a difficult one.  I started on a new treatment (Rubraca) which has really been kicking the stuffing out of me.  I had pneumonia in June, then pneumonitis, then became very anemic from the medication.  It took until September before I started feeling like myself again.

So I just had no energy to do anything with this blog.  Most of the time I don't think anyone reads it, and I'm just talking to myself.

I was in the hospital earlier this month after one of those "worst headache of your life" episodes. I still haven't come up with a word to describe the level of pain I had. I wound up going somewhere locally because the people at FCCC were concerned about the risk of a CVA.  After having some studies, they didn't really find anything wrong, so I just spent the night and then went home later in the day the next day.

The Rubraca had been on hold because my platelets had dropped, but they're back up again, so I'll be restarting it again on Monday.

Not much else going on.  I almost hate to say that.  It's like when I was working in the ED: one never used the "q" word. (e.g. "It's been a quiet night.")  Saying that was an invitation for total chaos.

Some color for a dreary day.

PS: Bonus points to the reader who gets the connection to the title of this blog and me.

Friday, June 16, 2017

Good News, Then A Little Bad News

It's been a while since I've updated this blog.  Since I was just at Fox Chase Cancer Center to be seen as a follow-up visit, I figured this would be a good time to dust the cobwebs off this blog.

I've been on Rubraca (rucaparib) since toward the end of April.  It had cut my CA-125 from over 500 to 193 in May, which was a terrific result.  This month, when we checked the CA-125, it had dropped from 193 to 26, which is an even better result.  (The CA-125 should be under 32, for frame of reference.)

Unfortunately, with me when there is good news there is bad news.  In my case, my hemoglobin is low (7.8) and my platelets are also low (77K).  The NP I was seeing asked me if I would consent to a blood transfusion, and I told her that I could not.  As one of Jehovah's Witnesses, I cannot accept any blood products, even if health care providers believe these products might be necessary to save my life.  (Acts 15:28, 29)  So, we're holding the Rubraca for a week and then rechecking my levels.  We'll probably need to do a dose reduction once my blood counts recover.  This is a drug you take for the rest of your life unless it's no longer effective or you're no longer able to tolerate the drug's side effects, so I'm sure I will be having plenty of times I have to stop then restart the drug.

The other bad news that I got was that I have pneumonia.  I was coughing a lot, but I just chalked it up to allergies.  Then I started coughing up blood tinged sputum, and then frank blood.  When I started coughing up globs of blood, I knew I was in trouble.  Fortunately, the NP was able to give me an antibiotic that should knock it out within a week. 

So, that's what's new with me.  After all that typing, I need a nap.

(I'm not sure why I picked this cartoon to conclude this blog.  It just amuses me.)

Saturday, May 20, 2017

(I Wish It Was Not A Sin ) To Kill A Mockingbird

We have a bully in our backyard.  It's not the little boy who lives next door.  No...our bully is of the feathered kind.  Our bully is a mockingbird.

It's kind of ironic that I'm harboring such ill will toward this bird.  (There actually may be more than one.)  For one thing, I used to love how mockers would mimic the songs of different birds.  And To Kill A Mockingbird is one of my favorite books; it's a book I read at least every other year.

But the mockingbird we have is a feathered terrorist.  For some reason, he has staked out our backyard as his turf, and woe to any other bird who tries to come there to the many feeders or to build a nest in the birdhouses.  My father has watched what has been going on and said the mockingbird will actually perch somewhere just outside of our feeders, watch and wait.  When he sees a bird come to the feeder, he'll swoop in and chase the other bird away before the poor thing has the chance to grab a bite.

The worst objects of his wrath are, of all things, bluebirds.  Now, talk about your bird that isn't aggressive.  The other day one of the bluebirds came to a feeder and the mockingbird went on the attack.  My Dad broke up the dustup, saying that he was certain that had no one intervened the mocker would have killed the bluebird.

In our state it may not be a sin to kill a mockingbird, but it is a crime, because they're a protected species.  So for now, we're stuck with our feathered bully, and our birdhouses go unused.

Thursday, March 30, 2017

"Once more unto the breach, dear friends, once more..."

I'm not King Henry V trying to rouse his soldiers to battle one more time, but I am letting my friends know that I am once more going to have to do battle with "the Beast."

It was confirmed this week that my ovarian cancer has reared its ugly head again.  I had suspected it for a while because I was starting to have the symptoms I'd had before, but after hearing the results of the PET scan, there was no denying it.

After my last waltz with chemo, I swore that would be it--no more.  My doc. and I talked about treatment options that were available to me, and we decided that my best option would be an oral form of chemotherapy that has been specifically used for ovarian cancer.  (Don't be fooled; just because it's not in an IV doesn't mean it isn't harsh.)

I told her about my reservations about going on treatment again.  Remember in To Kill a Mockingbird  when Atticus says to Scout "It's not time to worry yet"?   Well, my doctor basically said to me that we weren't "there" yet, and that she would definitely let me know when she felt it was time to stop.  That made me feel better, because as a nurse, I have heard doctors say to patients/family members that they can treat "x" disease.  Well, sure..you can treat someone right into the ground.  Treating isn't making that patient better.  I feel like I can trust her, even though I haven't been going to her for all that long.

So there you have it.  I'm not sure what else to say for now.

Friday, March 10, 2017

Well, what a difference a week makes.

I wound up having to go back for surgery to remove the implants.  Fortunately, I was able to go home the next day after lunch.

I didn't expect this to affect me the way it has.  Maybe I've just hit the wall of trying to smile and be fine.  I've had so many parts of me sliced, diced, lopped off or chopped out that I feel like a piece of human sushi.

So anyway, there it is.

Friday, March 3, 2017

Since my last post, I had the second phase of my surgery on Feb. 20.  It's funny: I felt so great the day after my surgery that I talked my doctors into letting me go home, even though my Hgb. was low.  A week later, I felt like I had to drag myself to get to the doctors' offices for follow-up appointments.

The breast surgeon was pleased with my progress and said I would not need to come back again, although I do need to go for genetic counseling.  Then I went to the plastic surgeon, and that was terrific, because I got those stinkin' JP drains pulled.  To sleep in my own bed tonight...sweet bliss!
I have to go back to see him again next Friday, as well as get some blood work.

As always, I am eternally grateful to my parents for making the trip to FCCC; it's a long drive but well worth it.                                                                                                                                                

Friday, February 3, 2017

My visit to FCCC earlier this week could have gone a lot better than it did.

It started off well: I saw my gyn/oncologist for my three month check-up.  She said my exam was normal and that we'd continue with visits every three months for now.  She said she'd call me with the results of my blood work that I'd had earlier that morning.  "It's been nearly two years since your last recurrence," she said, with a bright smile.  "That's really great."

After lunch I went to the plastic surgeon for a post-op visit.  I was concerned about this because my incisions weren't healing well; in fact, one incision had separated.  The surgeon checked them and said one incision was actually fine.  The other incision will require daily dressing changes with Silvadene cream.  At least it wasn't infected, and that means in all likelihood my surgery on the 20th will still be a go.

It was sometime during the afternoon that I got a call telling me that my gyn/oncologist, Dr. Chu, wanted me to have imaging studies because my tumor markers were elevated.  I asked if perhaps the issues wth my incisions not healing were causing my labs to look like there was a problem, and I was told "She (the doctor) has taken that into consideration."

So, I have to go back to FCCC next week so the plastic surgeon can recheck my incisions, then have a CT of the chest, abdomen, and pelvis.

Sometimes it feels like you just go from one crisis to another.

Friday, January 20, 2017

I'm recuperating from the first phase of my mastectomy and reconstruction.  This part hasn't been too bad; I had implants inserted to stretch the skin.  On Feb. 6th, I go back for the mastectomy.  I'll have to stay over night for one or two days for that surgery.  At that time, the surgeon will move the implants in place,  I'll have some minor "finishing touches" to do after that, and then that should be it.

I'm so thankful to my parents for being willing to take me to the doctors at Fox Chase (FCCC).  It's not as if FCCC is just around the corner; it's an hour and a half drive to two hours to get there.  The traffic can be a bear.  But my parents have done it uncomplainingly, even on the days when we had to get up at 4am to be there for a 7am appointment.

And I really appreciate the support I have gotten from my friends as well.  The last 5 years have been really trying, and it has meant so much to me to have friends stand by me.   Having a serious long term illness really tells you who your true friends are..

Thank you, each and every one of you.