Eulogy for my port

Port, I requested your installation 4 years ago

Because you protect me from pain, this I know 

Thenyou tried to kill me

With bacteria you fill me

So tomorrow it is time for you to go.

Your service to me I most appreciate

The awfulness of cancer treatment you did alleviate

I despised you at first,

thought you were the worst

Until the vein access you did mediate

BUT Saturday i was to start vacation with my family

Instead you yielded bacterial growth, damningly

I drove to an emergency room

To stave off my doom

And receive IV antibiotics lengthily 

Now I lie in my hospital bed

Thinking of these words to be said

About the trusty port

I’m about to abort

To delay winding up dead 

Bodily chaos

Progress is non-linear.  Every day is different; some days I feel pretty good, whereas other days I feel quite lousy.  I have learned that extra-strength Tylenol is quite helpful to take the edge off of "lousy", but the label says not to take it for more than 10 days and I'm swiftly approaching that deadline. 

My bone scan was all clear!  Huzzah!  The radiologist even compared it to my most recent PET scan (May 2018) and confirmed that they both looked great, with no signs of cancer.  Huzzah huzzah! 

BUT Dr. Oncologist doesn't like my fevers.  Dr. Google had suggested to me that fevers are a possible side effect of the steroid step-down, but Dr. Oncologist disagrees.  So at my appointment on Friday, which wasn't until 4:30, I had my blood drawn from two locations (arm and port) to rule out a blood infection, I had to pee in a cup to rule out a UTI, and I had a chest x-ray to see if I have a lung infection.  I am very grateful to the clinic employees who work hard for patients at 6:00 on a Friday even though all of their co-workers left well before them.  For example, the radiology department was completely closed, but the folks up in the oncology department thought that they were to be open until 7:00 pm.  Rather than go home without the x-ray, I happened to catch the last technician on her way out and she kindly agreed to administer my x-ray.  She turned on a computer, turned on the x-ray machine, and took my x-rays.  She was delightful!  Like me she has two daughters, and my daughters' middle names are also part of her daughters' names.  AND her wedding anniversary is my birthday.  It seemed so crazy to discover so much in common!!

I don't have any data yet on the outcomes of these tests, but I have an appointment at 9:00 on Monday to get the results.  Right now, my fever of unknown origin is more or less managed by extra-strength Tylenol so I'm not terribly concerned.  I figure if I had a blood infection, someone would have called me by now, lol. 

The sore spot on my chest that led us to the bone scan recently erupted into a rash, so perhaps that was what was causing the pain.  I have some ointments to calm the rash. 

The fevers have been majorly interfering with my exercise routine.  I have completely fallen off of the exercise wagon, for the first time since this whole ordeal started in January!  But I'm getting back on the wagon as soon as I finish this post.  The fever hasn't yet started today. 

My dear friend, R (not to be confused with M, lol), visited over the 4th of July holiday, and we had a lovely time.  She was lucky enough to be here for my daughters' Taekwando testing for their next level belt, and my oldest's next level will be first-degree black belt and my youngest's will be red belt.  We played games on the July 4th holiday, and the spouse made a fancy hot dog bar inside because it was too rainy to grill out.  We both wish we could see each other more often!  I think that we need to plan a road trip to Boston for next summer.  :) 

Independence

I'm here to tell you that going from SOME steroids to NO steroids sucks.  It sucks a lot.  This has been the worst of the steroid step-down yet!  This week, I have had fevers (up to 101 F; oddly enough, they mostly start in the evening and are gone by morning; I'm probably the only one who has been sleeping under two blankets in this hot weather), fatigue, swollen joints (particularly knees, hands, and feet), and nausea.  Oh, and allergic reactions!  The steroids have been keeping all of my allergies at bay, including my normal allergies to pollen, but now that the steroids are gone my immune system is waking up to all sorts of insults.  In fact, my body has decided to be allergic to sunscreen, so I have itchy red bumps on my arms.  Needless to say I will soon be the proud owner of a long-sleeved swimsuit. 

Today I felt quite a bit better, finally (my last steroid was Monday morning; I felt mostly fine on Tuesday; the crummies started in earnest on Wednesday).  I even accompanied the kids to the pool today.  Nay, I DROVE them to the pool.  Because I can drive now!!  Although the process of getting off the steroids sucks, being off the steroids doesn't suck.  Huzzah for driving! 

When my youngest, E, found out that I was no longer taking steroids, she ran through the house shouting, "Mom can drive!  And eat pie!"  I presume the latter part of this is because when I first started taking the steroids, people were bringing us pies, but then Dr. Oncologist told me to eat less sugar because steroids interfere with the body's ability to process sugar.  So I quit eating pie.  And E thought that that was a big bummer for me.  She has a big heart. 

You might be thinking, was it weird to drive after 6 months of not driving?  Because I thought it was going to be weird.  But it wasn't at all!  I kinda spooked myself a bit--I checked the mirrors approximately a bazillion times before backing out of the driveway, I was super cautious at stop signs, etc.  I didn't want to screw up and lose driving privileges!  But beyond that, it didn't feel unnatural to be behind the wheel.  The weirdest part is going to be getting back into the habit of driving.  That is, we are all used to me not driving, so Ian continues to nominate himself for family errands.  But I could do that! 

It was at my appointment with Dr. Oncologist on Friday that she told me I could drive.  Also at that appointment I learned that I can quit taking the prophylactic antibiotic (it was preventing a particular lung infection--mission accomplished) and doing the 4-times daily anti-fungal mouthwash (this was preventing a thrush infection--mission accomplished).  HUZZAH for no more antibiotics and gross mouthwash!!!  I swear that when she prescribed the antibiotic, she told me I'd have to take it for 6 months.  Needless to say, I didn't argue with this turn of events!  She did say that I'm to keep taking the valacyclovir, which is to prevent shingles.  But there's really no side effects to taking that, so it's okay. 

Also at Friday's appointment, I got scheduled for a bone scan.  Bummer!  This is because I have a sore spot on my chest wall.  There's no bump or redness, just a bit of soreness.  It started about a week ago, and I figured it was related to coming off the steroids (its adjacent to an area of increased fat deposition).  This chest-wall pain has happened once before, and after doing the scans and seeing that there was nothing wrong with me, I was told that it was probably just my screwed up nerves (from the mastectomies and radiation) and I should rub the area to desensitize the nerves.  That worked.  The screwed up nerves aren't doing me any favors now, either, because I can't tell exactly from whence the pain is originating.  I think it's superficial, that is, originating in the skin and not the ribs, but I can't be sure.  Dr. O therefore ordered the bone scan to rule out an explanation for pain in the ribs.  This bone scan will be on Tuesday and will take 3 hours (inject me with some crud, then scan me 3 hours later).   I'll get the results at the end of the day on Friday. 

Happy Independence Day, everyone!  I will be celebrating my independence from steroids!