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.

 

 

 

 

Depression sucks…

One of the side effects of cancer treatment is depression.  Frankly, I don’t think I can blame my mood on that.  Not having to use half of day going through treatment has provided more “think time.”  My thoughts have ranged from “I’m going to start getting my act together now” to “I’m going to die so why worry about it.”  Probably if I had been told anything about my chance of recovery, I would go on with plans and dreams.  I was told that radiation effectiveness wouldn’t be known for at least 3 months after a cystoscopy.  My Radiation Oncologist, Dr. Song, at least gave me this much information issued the ordered for what he needs.  OK, I jokingly said, “Well, at least he thinks I will live 3 months.”  Then it hit me that it really should have been “I have 3 months to live.”  Sort of takes any plans off the table.

I find it hard to get motivated this week.  Why clean the apartment when nobody visits?  Why start a new craft project when it won’t get finished anyway?  Why go to the cycle shop to learn about e-bikes when you can’t afford one?  Why update your resume when you can’t go back to work? Why get your hair cut, nails done, order MTA passes? And it goes on and on…

depression

This funk is just not me.  I may get down but it doesn’t last very long because I cry it out and something/someone takes my mind off whatever caused the blues.  Not this time. Somehow waiting for your own demise is not the same.

It doesn’t help what when you live on a small fixed income at this time of month you’ve run out of cash so shopping or going to the local Cheers can’t be a solution or diversion to affectuate mood change.  I can’t go to a baseball game Wednesday that some friends invited me to since I can’t walk. Etc, etc, etc…

I know this mood will pass, but it is intense right now.

I am only sharing this as an example of an unexpected side effect of cancer diagnosis and treatment.

 

Frustration – Grouchy Friday

Frustration!

image001.pngThis was a very nice invitation sent with the following subject line “Subject: Sent on behalf of Dr. Noah Hahn: Please Join us for a Bladder Cancer Patient and Family Program”

now, I have been living in a state of frustration, not knowing if I going to live or die.  This is sent from my Medical Oncologist and intended for the patient.  I read into this (my mistake, admittedly) that this was something that patients of Dr. Hahn needed to know.  WRONG!  I truly don’t know who the audience was made up of but it was surely not Dr. Hahn’s patients.

There was a panel of the doctors and administrators of the cancer center, the benefactors, and a surviving patient.  Each had something to say which was filmed.  The “stars” were so busy patting each other on the back and presenting pie-in-the-sky ideas, it was a total waste of my time.

I have to admit that the catered box lunch was good!

So I wasted 1/2 a day (traveling & attending), got no answers to MY issues, given no hope for survival, listened to the doctor in charge of my case kiss up to Big Pharma and ended up in total frustration ith fumes coming out of my ears! Basically, confirmation that they don’t give a shit about the patient who is only the excuse for a grant!

Movin’ Along

I have now completed 13 radiation treatments and 4 chemotherapy sessions.  Scary, but few side-effects.  Due to medication given along with chemo drugs, I’ve had no nausea or lack of appetite.  I do have numbness in my toes which I’m told is something normal with chemo.  As for the radiation, I’ve experienced a little lower abdominal discomfort but nothing to scream about,  I do tire very easily but again, I’m told that is normal.

I sorta got excited prematurely.  I thought I had one more chemotherapy treatment but it’s actually 2 treatments.  False alarm.  So the real test for the chemo regimen is an MRI with Contrast 4/13.  This will be used to compare with one taken at the start of treatment then we’ll see what next steps are.

5 more weeks of radiation so no end in sight with that.  When I get frustrated, I have to remember this is sure better than the alternative!

When this “adventure” started, I was totally at wits end.  I thought a doctor with urology and oncology i his title would take care of me throughout the journey.  WRONG!  I wish I had known earlier that I needed a Medical Oncologist (the chemo guy) and Radiation Oncologist.  I was floundering, confused and thanks to my PCP, given an increased dose of antidepressant.

I received that attached list of medical personnel involved in treatment.  I call it a “cast of thousands) but I more or less have one or more of each.  If you are getting ready to go through this or supporting someone who is, this may be helpful.  My insurance provides for a case worker who helps navigate this web of medical personal which is also helpful but nothing that you can’t do by asking questions no matter how “stupid” you think they might be.  Remember, it’s your life and medical personal are nothing but individuals paid by you.  They work for you!

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