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!