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.

 

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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!

Blood Work, CT Scan, GREAT NEWS

OLYMPUS DIGITAL CAMERAJohns Hopkins Radiology for CT scans has moved to a different building.  It is really a bright & cheerful site with modern seating and outside views throughout.  It’s really a nice environment for a generally unpleasant experience.

Thursday was totally set aside for Johns Hopkins.  First stop in the morning was with Oncology Phlebotomy for the blood draw,  They do offer complementary coffee and tea so a grabbed a cup of coffee on the way to the lab.  I have very small veins so this is not an easy task to draw blood.  Well, the phlebotomist nailed the stick and off I went in 10 minutes 2 vials of blood lighter.  Next stop was Radiology for a CT Scan with Contrast.  I had to find the new location which is a bit of a hike.  With my bad legs, I was in a good deal of pain when I got there.

I was about 45 minutes early for the appointment so I figured I’d have some time to read a book I brought that a friend had written.  No sooner did I open the book than the attendant call me & took me back to the lab.  I sat down again, started to open the book and immediately got called to have an IV inserted.  I had to drink 2 large cups of tepid water so I sat  there about 5 minutes and then was taken to the radiation room.  I was situated on the scanning table by the radiation tech & off we went.  As a side note, I didn’t even have to undress and put on one those “fashionable” gowns.  There was a base scan, then the contrast dye was introduced through the IV port,  Well there is a strong sense of warming and, don’t ask me why, a terrible taste from the chemicals.

The scans were completed and off I went.  This whole thing took less than 45 minutes.  I was off to find my way back to the Weinberg building.  Leaving a crumb trail was not an option & dutifully frowned on by JHH.  After only 1 wrong turn, I found my way back to the starting point with plenty of time to spare for my 1:30PM Medical Oncology appointment with Dr. Noah Hahn.  I grabbed another coffee at the cafe’ and proceeded to the waiting room.  Once again, got settled and went to open the book and was immediately called to get my vital taken.  Of course Dr. Hahn was on time which is not heard of at the Outpatient Clinic.

Off I went to the exam room, chit chatted and then Dr. Hahn broke the good news that my treatments were over.  The scans showed shrinkage of the cancerous areas and he felt that now I could go on a 3 month follow-up schedule.  That’s it – I’M DONE!  YEAH!  I don’t have to go back until August for another follow CT Scan.  Should the cancer reappear, the next step would be immunology treatment, but right now my fingers are crossed and I am allowing myself to be optimistic for the first time since last October.

I can now start making plans for longer than the time to my next appointment.  I don’t even remember how to do that.  As things develop I will write about it.  I still have the peripheral artery disease to deal with and have an appointment to discuss that next week.

Through the kindness of strangers…

I’m still in a funk but recovering.  I am starting to feel like a rational human being.  I will return to normalcy – really!  I’m not sure which is worse: severe depression or self-pity (or maybe they’re one and the same).

I am blessed to have the support of “friends” I haven’t seen in 50 years, 30 years and even last month.  Great encouragement and in some cases, ass kicking.  But what really made me implement the butt kicking happened this morning at the laundromat.  Not exactly the classiest place to be, but when you run out of undies there are binary choices. Only one option is the least bit appealing.  Hence the reference to “strangers.”

So I managed to get my act together (not to mention I had already scheduled the Mobility Bus) to go to the laundromat.  This took some doing.  I was at the change machine in the laundromat and one of the quarters it was dispensing fell on the floor.  I knew it but continued collecting the change.  I was going to pick up the one that dropped but before I could get to it, a total stranger reached down, picked it up and handed it to me.  He even gave me nice smile.  My first thought was “do I look that bad” but then I realized this gentleman was just being that, a gentleman.  Honestly, he looked like he didn’t have very much, but he had kindness.

As I’m going about the miserable task of laundry, I dawned on me – you still have so much, maybe not is worldly things but intangibles.  My little inner voice told be to “quit being a needy brat”  “You have people who care; so quit abusing them  and just be grateful.”

So I decided I needed to be a Big Girl, remember that this manic depression is caused by cancer treatment and live what life I may or may not have.

Thank you all (or y’all) & let me know when you have grown tired of me – I will shortly be back to my sarcastic self.  It’s sure easier to be on the giving end of kindness than being embarrassed by being on the needy end.  Thanks for the support.