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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Chemo Started

I have had 2 chemo treatments.  For mine, this takes about 4 hours.  First is an IV of saline to keep hydrated and to ultimately flush the drug from your system.  Then medicine to help nausea, etc and finally the chemo drug is added.  They also pump in another saline IV for good measure.

OLYMPUS DIGITAL CAMERAHonestly,  there is nothing remarkable – no pain, no burning, nothing.  Just sit in a lounge chair with a needle attached.  Through 2 treatments I have had no nausea; have felt very tired for one day; then was ready to rock n roll.  I’m starting to question whether this is actually doing anything or isn it a placebo!  I see the Radiation Oncologist next week along with the surgeon then the Chemo Oncologist on the 24th.

I’m just along for the ride now.  I’m trying not to believe everything is working only to find out it’s not.

The banner in the lobby of the Kimmel Cancer Center shows some of the major players in the Johns Hopkins Bladder Cancer team.  My (mine only, HA! HA!) Chemo Oncologist is the one on the left, second row.

So far, so good.

 

TURBT Done!

Friday I had the procedure which is in essence a bladder house cleaning.   Any junk that remained from the original mass was taken out is taken care of and a new specimen is sent to pathology.  This is done under general anesthesia with a cast of thousands looking on.  That is an exaggeration, of course, but it really felt that way – surgical assistant, surgical nurse, anesthesia nurse and other unidentified medical personnel (I think).  I’m extremely glad to have been in a comatose state or I would have been embarrassed.  Gurney to operating table, positioned properly – THE END.

The patient (better known as ME) can’t get discharged until 200ml of urine is discharged, translated, pissed.  I can’t tell you how many cups of ice water I had to consume, but finally I got to go home.  Because of the anesthesia, I had to have someone pick me up instead of using the Mobility bus.  My dear friend, Polly, and her granddaughter collected me.  Granddaughter just got her CNA so it was practice for her, not to mention that Polly and her GPS are mortal enemies. I have to admit I was very shaky which I didn’t expect so I was very glad the hospital was insistent on making me have a “chauffeur.”

I got home and with a little help made it up the stairs and into my apartment.  I was told to rest – no instructions needed.  When I got inside and put my “stuff” down, I laid down and immediately fell asleep for 4 hours.  I am not someone who can “nap,” especially when the sun is up.  Well, bathroom called, pain was piercing and I was still light-headed.  I had some tea and went right back to sleep until Saturday morning.  I got up and felt like I had been on a long bender – miserable hangover without alcohol!  Felt bloated, foggy and was nodding off.  Went back to bed – slept until Sunday morning.  Felt like shit but looked well-rested even with no make-up.  Vanity helps.  HA!

This is the second time I had the TURBT and the recovery was very different for both as were the recovery protocols and THE PAIN.  I have a follow-up with my surgeon next week and going to quiz him.

I also have another question – did he really do the surgery both times or did a resident or fellow?  It is a teaching hospital after all.  I would never know since I was out to the world.

Now a bit of funny (you must have a perverted sense of humor to face this).  I was talking to the anesthesiologist and said “So you are going to put me to sleep?”  Her response:  “No, I’m not a vet!”  Chuckle.

Journey through Radiation

After a few months having to make major decision regarding healthcare choices, my journey has begun.  I am starting this blog to share my experiences and possibly help someone who might benefit from what to expect in a similar situation.

I’ll fill in the background as we go along, but for right now, here’s bit of info.  I am a 67 year old widow who was diagnosed with bladder cancer in late 2016. Apparently the first choice of US physicians is surgery to remove the bladder. Well, after experiencing a rollercoaster of emotions I decided to cancel the scheduled surgery and pursue other options.

My attending  oncological urological surgeon (a mouthful!) then referred me to the Director of Bladder Cancer Oncology who then sent me to the radiation oncologist, Dr. Daniel Song. Dr. Song’s research interests include the development and refinement of new imaging methods to improve radiation targeting, as well as innovative means of reducing potential side effects of radiation treatment. His research efforts have been sponsored and funded by competitive grants from organizations such as the Department of Defense, the National Cancer Institute, and the American Cancer Society.

Dr. Song explained that most papers published on treatment with radiology are published in the UK, there there has been much research and various degrees of success.

The complete treatment plan is still in the works, but we are beginning with a second TURBT tomorrow.

Trans-Urethral Resection of a Bladder Tumor is a surgical procedure that is used both to diagnose bladder cancer and to remove cancerous tissue from the bladder.  This will be under general anesthesia, so while a cast of thousands is doing their job in the OR, I’ll be sound asleep.

 According to the American Cancer Society, “Even if the cancer is found to be low grade, a second TURBT is often recommended several weeks later…If the cancer is high grade, if many tumors are present, or if the tumor is very large when it is first found, radical cystectomy may be recommended…Radiation therapy (often along with chemo) might be an option for treatment, although the chances for cure might not be as good.”

I’m lucky to have some of the best medical facilities in the nation.  All of these procedures will be at one of the Johns Hopkins centers; tomorrow is at the Johns Hopkins Bayview campus. http://www.hopkinsmedicine.org/johns_hopkins_bayview/

I’ll try to post photos, emotions and facts along the way.  If you would like to receive updates via email notifications, please submit the contact form.