Hospital (not Happy) Times are here again!

How this cancer adventure started is returning to the beginning.  Originally I went to Johns Hopkins to discuss what would be done about claudication that was causing leg pain.  Activity was getting extremely limited.  That’s because the arteries get clogged with clumps of fat, cholesterol and other material, called atherosclerotic plaques. These plaques can make arteries so narrow that less blood can flow through them. You feel pain because your leg muscles are not getting enough oxygenated blood.

When performing a pretty normal test, i.e. scan with contrast, an extremely alert radiologist I.D.’s the probable cancer.  Call it serendipity, luck of the Irish or just plain great doctoring – the cancer was caught, treated, temporarily in monitor-only mode.  Thanks to a great deal of prayers in multiple faiths including atheism, a beautifully gifted necklace made from citron (healing stone) and a few firm kicks in the butt, I’m going back to the beginning.

I do have to make sure I carry my Hope Stone with.

HOPE STONE PROJECT

  • Choose an image from the magazine that inspires hope, courage, perseverance, etc.
  • The image has to be the same size as the hope stone. You might consider putting the stone over the image in the magazine, tracing around the stone with a pen, and then using the scissors to cut out the image.
  • Put a small drop of glue directly on the picture (this seems odd that you put glue over your hope/courage/perseverance picture but TRUST us).
  • Then stick the image on the flat side of the stone and press it and flatten it.
  • The glue will eventually dry clear (after a few hours)
  • Once dry, trim the magazine paper around the hope stone, if it is needed.
  • Carry stone with you to remind you that you are RESILIENT.
  • Make one for yourself and if you have time, make one for another patient and place in HOPE jar.

 

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You’re Fired!!!

After the promising diagnosis by my cancer team, I started dealing what started this whole cycle, claudication.  An MRI with contrast for the vascular surgeon & an extremely alert Radiologist discover the probable cancer.  I call it serendipity!

Well, after a year I revisited the Vascular Surgeon, who decided this “fix” was a three step process.  So we, and I use the “we” liberally, decided to schedule Step 1.  He diagnosed that the blockage started in the groin area and that required stents. A stent is a metal or plastic tube inserted into an anatomic vessel or duct to keep the passageway open.

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Well, to make a long story short, the procedure went off as scheduled.  Apparently they thought it was succesful,  but the patient (ME!) can’t agree.  My discharge instructions were “take it easy” and don’t lift anything over 5lbs for 5 days and finally, don’t exercise.  I had no problem following the last instruction since excercise is not high on my priority list.  Also, if in pain, call the doctor or resident-on-call.

Procedure was on a Thursday and by Saturday I was on so much pain that I took an oxycodone.  Don’t ask, but Tylenol just didn’t make a dent in the pain nor did a stiff Scotch & Water.  By Monday, I could bear the misery and followed instructions. I called the doctor who performed the surgery and, after negotiating the phone system, left a message with his assistant.  I can’t tell if she an RN, NP or am admin assistant, but she is not helpful.  She called me back on Tuesday morning, a day later, with this brilliant advice: “call your PCP.”  A shook my head, got snapping (me?) and decided I’d have to bear the discomfort, and that’s polite.  Anyway, I finally talked to the doctor who basically had the attitude of “not my problem, the procedure should cause this”  Off he went to NYC for a conference and then on vacation,  Nothing he could do and he didn’t have any appointments before my scheduled followup.  This stenting ended with me not being able to walk without pain, longer than bed-to-couch, and have numb, cramping feet.

I do have a schedule CT with Contrast for my Medical Oncologist in a few days.  This is coincidental because of a normal follow-up appointment.  The Vascular Surgeon told me he would review the results and call me from NYC.  Right!  Maybe he will, maybe he won’t, I’m not holding my breath,

I know he has all the credentials – Georgetown through and through, respected papers, recognised as an expert, everyone that should give me confidence.  I may be a demanding patient, but I do expect a little more from my doctor than “slam bam thank you ma’am.”  I’d like a kiss at least.

I will keep the follow-up appt and talk to my Medical Oncologist.  But if he doesn’t humor me, I not proceeding with any more procedures with him.  He’s Fired!

Doc says “see you next year”

This week was the follow-up with my Radiation Oncologist.  He is the master of my high beam radiation plan.  He has kicked me out (at least for 7 months).  Actually he first said a year for follow up, but moved it up to coincide with the follow up cystoscope is January.

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New sculpture in CT Lab which moved buildings earlier this year.

Johns Hopkins is holding a workshop “Surviving Survivorship Living with Cancer.”  Apparently they hold something like this annually.  After looking at the agenda, I decided to register.

I started questioning why my happiness at the good visit with my doctors was short-lived.  “This shouldn’t happen,” I keep telling myself, “you should be shouting from the rooftop.”  Well, I realized that cancer will always be the elephant in the room.  When you realize it may occur again anytime, it sort of dampness the euphoria.

But I know, be grateful for all the good news and ignore the “Emperor of all Maladies.”  It is hard to do however.

The plus about all this is that I have been cleared to meet with my Vascular Surgeon to discuss the claudication in my legs.  This is how this entire adventure with cancer started – CT Scan with contrast should the bladder cancer.  Alert radiologists!

Of course I had my “healing” citrine necklace on.  I think that was the final kick to the finish line.

 

Manicure?

OLYMPUS DIGITAL CAMERAYesterday, I headed to get my nails done.  This is a luxury I indulge in every month.  Sure I can do it, but Lion the nail tech (yes, that’s her name) does so much better plus I get a hand massage.

Anyway, she actually had to cut my nails.  Wow, I was excited.  Why?  Because the after-effects of chemo & radiation are finally almost gone.  More energy, nails growing and I had to shave my legs.  Small things, but they’re big to cancer patients.

I have to admit not have to shave legs most of the summer was nice but the reason wasn’t.  With cancer is the lower abdomen, typically chemo/rad treatment hair loss is in the lower body, not the head area.  So head hair growth is normal and leg hair slows greatly and thins.

So in a nutshell, hair growth and bone density have recovered and I’m “zipping” around on my red scooter.

Watch out – I’m coming!

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Due to claudication, i.e. a condition in which cramping pain in the leg is induced by exercise, typically caused by obstruction of the arteries.  I also have “fat feet” as my husband used to describe them.  All of this has made getting around difficult.  Mobility Bus has been a great help but it’s those quick little errands that are a nuisance – things like going the 3 blocks to the grocery or two blocks to the laundromat.

Well, I finally got approval for Durable Medical Equipment (DME).  The bright red scooter arrived yesterday.  I not going to set any land-speed records – it only goes a rollicking 4mph. 😀 😀 😀 It’s sorta depressing though.  About 18 months ago, I walked 2 miles a couple of times per week for exercise.  I even borrowed a friend’s dog for a 2 miles doggie walk for charity.

After I meet with the Radiation Oncologist next month and (hopefully) get the OK, I will discuss the options for fix this with the vascular doctor.  Listen to me, I sound like a mega hypochondriac!

Should you need help with mobility, it is possible to get DME approved by insurance but start early because the process takes 6-8 weeks.  I will announce when I qualify for the Indy 500 next Memorial Day!

2 down, 1 to go.

Just received the results of the urinalysis from my last “procedure” as they call it. It’s actually good news! I’m starting to feel optimistic, but can’t let myself.  September is CT Scan with Contrast and appointment with Radiation Oncologist.   Of all the very good doctors that I “belong” to, this is the most informative one.  So we’ll see then.  Fingers are crossed.

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Negative for Urothelial Carcinoma

What he said-what she heard disconnect

Something I have felt throughout this journey, as other patients have concurred, is the need for emotional control.  You just can’t let yourself look ahead or to expect good news from anyone.  It’s never good to think it could be over.

Well, I had an appointment with my Urologist (also called Urologic Surgeon, Urologic Oncologist).  After performing the cystoscopy, he said “Do you want the good news, or GOOD news.”  Of course I heard “Do you want the good news, or the BAD news”  Reflex reaction in the ears is guess.

I said “Bad news first.”  Dr Johnson and his assistant gave me a puzzled look then he “It’s all good news, I didn’t see anything.”   I heard “we have to redo the test.”  He finally said, “Pat, you don’t need to come back for 6 months; I didn’t see regrowth of the tumor.”  Me: “No joke, Michael?”  Well, after everyone finished laughing at me, I did a little happy dance and scheduled an follow-up for 2018!

So at this point, I have been released by the Medical Oncologist (Chemo doc), the Urologist and only have one more to go with the Radiation Oncologist in September.  The 6 month follow-up is apparently SOP like the annual physical.

After I allowed my emotions to bubble up, fought rush hour traffic and got home I was ready for a mini-celebration.  Uncorked a California Penot and toasted everyone who have gotten me this far.

The journey is not over but I can face next week at least.  Thanks to all the medical personnel, my friends (new & old), fellow cancer patients and all the good wishes and prayers in every denomination imaginable even atheism.

Don’t go away – I will share the stories of the Hope stone and the Healing Gem art necklace that I’m sure have had influence on the progress so far.

More Waiting Tomorrow

Gosh, it’s been so nice dealing with other issues rather than The Emperor of all Maladies. But tomorrow I have to go see the Urologist and have a cystoscopy.  Not jumping up and down about the procedure, but hope the results are promising.  This needs to be done for the Radiation Oncologist.

The one small bit of good news about this procedure is that it doesn’t require general anesthesia.  The other small bit of good news is that I’m female, not male.  Less distance to travel.  HA!  HA!

I know there is a waiting list for procedure rooms and Ors for the doctors at Johns Hopkins.  I would like to think this is because they are dealing with advanced care rather than surgery-happy or performing useless procedures for billable hours.  Yes, if nothing else, cynicism comes with the amount of time one spends not knowing if it is fruitful.

Results pending in future post!

Mobility Matters (And I’m Just Whining Today)!

Yesterday was the first day that I ever felt I was handicapped.  Along with the cancer diagnosis & the treatments I have had predictable limitations, i.e. tiredness, some pain, the “sunburn” of radiation, but nothing more than a nuisance.  What started this whole cancer thing was from a CT Span ordered by the Vascular Surgeon so he could deal with something called Claudication.

Claudication is pain caused by too little blood flow, usually during exercise. … Most often, claudication is a symptom of peripheral artery disease, a potentially serious but treatable circulation problem in which the vessels that supply blood flow to your legs or arms are narrowed.  This does require bypass surgery but could not be done do to cancer diagnosis & treatment.  Don’t really know why but I figured why perform surgery on a patient who is going to die from cancer!

Back on the topic of mobility.  Because of the leg pain (which has gotten much worse after the chemo/radiation).  I have had the good fortune of being approved for the MTA Mobility Service.  This is a car/van/bus the provides door-to-door service to one or more riders for $2.  They have been excellent, but it is a bit a an inconvenience to have to schedule at least 24 hours in advance to go to the grocery. laundry or the pizza shop which are 1-2 blocks away.  And a return trip can only be booked 2 hours after drop off.

Well, yesterday I was a volunteer for Artscape.  Artscape is an annual art festival held in the Mount Royal neighborhood of Baltimore in the hottest week of July. Since its first annual event in 1982, it has become the largest free arts festival in America.  Now it wasn’t open to the public yet but road closures had begun.  Mobility dropped me off at a corner close to the volunteer spot, but could pick me up.  I did make it the 2 blocks to the light rail and caught that close to home and then got a taxi for the rest of the way.  Problem solved.  So why am I in such a funk?

I couldn’t walk around Artscape and see the exhibits.  I had planned to go see the ArtCars and their parade this but couldn’t go  because I wasn’t sure I could get home. Uber was an option but at $35-40 unaffordable.

Why don’t I drive?  I don’t have a valid license.  It was suspended 18 months ago.

Why don’t I have a scooter, bike or something similar?  That’s a real adventure.  Scooters are considered Durable Medical Equipment (DME) by Medicare.  If you want help paying for a mobility device, i.e. you can’t afford it, you have to go through this miserable process.  DME is supposed to be for in-home use only, so needing it to get around outside is very questionable.  Hence bikes & regular scooters are not covered and outside may budget limits.  I have been “interview” for a medical scooter, may or may not be approved and may know something in 4 weeks.

I’ve learned or at least conformed to mobility limitations – some brought on by myself and some brought on by physical needs.  But not being able to participate in events like ArtScape or the race track are frustrating.

Should you experience any disabling results of treatment, please contact your insurance company’s Case Worker and have that person manage scooter processing for you.  Not only is it depressing to deal with limited movability and  limited activities, dealing with the paperwork & policies to get insurance help is overwhelming.  And DON’T under any circumstance shop for something you would like because you’re NOT GOING TO GET IT!