THE END! And it’s happy.

pexels-photo-590513.jpegI have been released with 6 month follow-up.  Basically, it been approximately a year since treatment ended and there are no signs of reoccurrence.

My many thanks to friends whether spiritual, virtual or real for support and the occasional butt-kick when needed.  One mentor kept me occupied when a started clamming up and provided butt-kicks and laughs when needed.  Once longtime friend let me phone flirt too.

If you should know someone or you have the deafening diagnosis of bladder cancer, it does take a lot of little things beside expert medical care to get through it.

My journey will go on but thankfully cancer-free for awhile.  Bladder cancer DOES have a 25% chance of reoccurance within 5 years, but if that happens, a new journey will begin.

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One More Milestone

Follow ups with Physician, Medical Oncologist and Radiology Oncologist are scheduled for every 3 months after the last treatment.  In the case of bladder cancer, CT scans with contrast are performed along with a cystoscopy.  As they say, a picture speaks louder than words, so here’s the result.CT Result.png

It’s time to breathe for another three months.  This will be the final follow-up on this schedule.  If all is still “unremarkable” as the radiologists say, it will be the final visit with the Radiation Oncologist, and Urologist and Medical Oncologist will move to a semi-annual schedule.

Still working on the claudication issue & plan to proceed with surgery on the right leg in May-ish timeframe.  Frankly, I just didn’t realize the length of time the recovery takes so I figure being able to rehab by walking outside is a  positive course of action.  Can’t walk 18 holes, but…..

Time to keep fingers crossed!

When I started this blog (with a lot of butt kicking from my not-so-old boss), my intention was to share the emotions and knowledge gained from diagnosis through treatment.  Well, now is the first benchmark or day of reckoning.  Tomorrow is the follow-up with the Oncology Urologist for a cystoscopy to check for any new cancer activity.  I may breathe again tomorrow afternoon!

However, I have learned something about one chemotherapy side effect – neuropathy.  Peripheral neuropathy — a nerve disorder that can cause weakness, numbness, tingling, and pain (legs, fingers, feet)— is a common chemotherapy side effect. The symptoms usually peak about 3-5 months after the last dose of treatment is taken.

Personally, I thought the numbness in my feet was due to PAD  (Peripheral Artery Disease) or claudication.  However, the this issue has been “dealt with” though surgery with no relief.  Process of elimination – now the numbness has been a specific cause, chemo.  I have a scheduled checkup with my Medical Oncologist and will have him give me a second opinion, but the diagnosis makes sense due to timing and symptoms.

There is really no medication or cure.  Take 2 Tylenol and walk as much as possible helps.

I share this for anyone anticipating or supporting someone anticipating chemotherapy treatments.  Simply ask your Medical Oncologist if this is something you should prepare for.  NOT all chemo causes neuropathy!

Shameless promotion for my mentor Anura Garuge’s book: Central Pain Syndrome: Chronic, Confounding Pain Such As That Of Fibromyalgia.  This is a fairly quick read that

adds some insight into possible reactions.  Available at Amazon.com.51w4Np5YLeL._AC_US218_

Keep you fingers crossed for the result from my procedure tomorrow!

 

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.

 

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.