Bee’s Knees 5

This is a continuation of an ongoing knee issue.  It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.

What’s happened since the “quick kneecap recap” below:

After my April 22 injection, things were mostly better for a while.

May 12, I went to a Celebration of Life service where the chairs were so incredibly uncomfortable.  They looked really nice but… I had trouble sitting.  I’d have to bend part way, put my arms on the armrest and fall the rest of the way.  While seated, it was a weird angle, so I didn’t like to sit but standing back up was very difficult.  My knees were stiff and a pain through the next week.

Things were okish for a while.  June 7, we went to NYC and did a lot of walking/stairs which always makes things a little worse.  Around this time, my right leg started having an aching (bone?) pain.  I’m hoping that it’s “just” sciatica.

June 18, it was time for another stupid accident.  I got home from work, put my car in gear and the emergency brake on.  I stepped out of my car with my left foot planted on the driveway.  Somehow, the car rolled backward, twisting my knee.  Three Tylenol and a brace.  Of course, it was one of the braces I’m allergic to so I then had to take a Benadryl.  I’ll find one of my non-allergenic braces a little later.

June 22 – back to “normal” knee pain. Rest, keeping my knee up, a non-allergenic brace and Tylenol all helped.

 

A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.  Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/

May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

 

September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection).  I did notice some sleep issues that first night, probably since I had the cortisone so late in the day

It was wonderful and got me through a cruise to Maine and Canada.  In Bar Harbor, I overheard some women talking about their knees.  One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee.  I’ve asked a couple doctors and Dr. Google.  No one seems familiar with that idea at all.

It also got me through our son’s wedding in October, including climbing stairs! 

It also produced one of my only smiling photos, ever!

December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection.  We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots.  He hadn’t thought I should get this.  But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.

By then, the knee pain had returned, anyway, so no issues

March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women”
This is very good – much stronger than the one I mentioned below on September 8, 2018.  The only real issue I have with it is that it bent, so I have to bend my knee to put it on.  The other one is completely straight and just wraps around.

The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.

I do love that they’re making products for people with latex and neoprene allergies,  though!

 

April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.

On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.  Not fun!

When I got home, Tom was sure he could do it…but he couldn’t either.  He drove it in to Advanced Automotive.

One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.  

Could have been even more serious!

They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.

Car runs like new now 🙂

So, I missed my first appointment but got a “new” car.

April 10, 2019, I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.

I think over time, the elastic may stretch out, making it harder to keep on.

The whole is covered with a washable velour-like fabric.  The price was reasonable enough that I could buy another one if/whey that strap expands too much.

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

During this time, my pain was so bad that I was considering surgery – later. April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection).  This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.

I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September.  These look like places I will want to walk!

She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months!  I could have saved myself a lot of issues in early 2019 had I known that   So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.

For reasons known only to her, she did the injection in my inner knee-cap.  Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.

She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.

Death Dreams.  I don’t think I’ve posted about these before but I used to have them quite often.  I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection.  The first was about 6:00 PM.  I’d fallen asleep for a nap and DH was talking to me (in real life).  I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service.  I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.

The next was similar about 3:00am on 4/23/19.  I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was.  I just knew I needed to take “something” to stay alive and wasn’t sure what that was.  I looked through my phone for ideas and checked the meds by my bedside.  Nothing.  Finally, I woke up more completely and realized it had been another dream.  I also picked up my Kindle and went back to sleep for another hour.

This morning (4/23) there’s still a bit of discomfort but I can deal with that.  I also had a bit of trying to run to the bathroom a little quicker than usual.  I also don’t remember that from before but I assume it will go away soon.

I hope this shot lasts nearly 3 months, too!  That would take me to mid-July. 🙂

I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:

 

Starting September 2, 2019, if I get 4 shots a year they would be: September, December,  March, June, September.

Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May,  September

 

Stay tuned for…

National Cancer Survivor’s Day

 

 

Observed annually on the first Sunday in June, National Cancer Survivor’s Day has been set aside to “demonstrate that life after a cancer diagnosis can be a reality.”

Each year on National Cancer Survivor’s Day, events and celebrations are held and hosted around the United States by local communities, hospitals and support groups honoring cancer survivors.  Events may include parades, carnivals, art exhibits, contests and testimonies. President George W. Bush and the National Cancer Institute director each included a commencement at the 2008 celebration.

 

So today is my day and my mom’s day and countless other people’s day.  I’m a kidney cancer survivor – 13 years now!

My mom survived colon cancer TWICE

My sister-in-law survived breast cancer TWICE

My DH survived melanoma and is working hard at surviving prostate cancer.

It hasn’t been all good though.  There have been many more in my extended family who did not survive, including my dad and my aunt. 

 

Congratulations to the survivors on this special “Who Knew” holiday, National Cancer Survivor’s Day

 

 

13 Years Kidney Cancer Free!

WOOHOO

Amazing! It’s Been 13 Years, Already.

Today is the Thirteenth Anniversary of my kidney cancer surgery.  These thirteen years have been bonus years for me.  For my cancer stage, the 5-year survival rate was 81% and I’ve made it more than twice that long – so far.
What were the odds I’d get kidney cancer? According to my “risk factors”, I “should” have had colon cancer because both parents and an aunt had it twice each.  Of course, there’s no guarantee that I won’t get that, too.

And the risk factors for kidney cancer aka renal cell carcinoma? The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

  • Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing’s gift

  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn’t clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op but it’s back now.work

  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?  

  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic kidney disease.  I don’t have that but half my husband’s family does.  Hmmm – wonder if that’s contagious

  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I’ve wondered about this but, you know, it’s too “rare”.

  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you’ll develop one or more renal cell carcinomas.

Not that I know of. 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).
April 28, 2006, I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.
When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthesia they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.
When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.
Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.
I owe him, the original doctor, and my Cushing’s doctors, my life.
The following are extracted from posts that were made during my kidney cancer diagnosis and surgery in 2006:
From Alice April 29, 2006
This is Mary’s friend, Alice (Dearest of Power Surge).
I’m not going to go into every detail at this time. I will fill you in on more details as I receive them from Mary and Tom. I’m sure Mary posted on the boards that she recently went back to Johns Hopkins in Baltimore to be retested because the tests that had been done the past year were incorrect and she was getting the wrong dose of hGh for the past year. In any event, she was tested again on Thursday and then returned home. The above is just a preface to create a time frame of events. It isn’t the reason I’ve come here to ask for prayers for Mary.
This is: Mary mentioned to me last week that she had noticed some blood in her urine. She was going to get it checked. As it were, when she returned from Johns Hopkins, she drove her husband, Tom, to get his regular biopsy for his history of prostate cancer.
While in the emergency room, Mary started having cramps in her stomach and when she went to the rest room, discovered a great deal more blood in her urine. Fortunately, she was at the hospital with her husband when this occurred. The cramps were becoming more severe. The doctors checked her out and they found a tumor in one of her kidneys – the tumor is actually the size of the kidney.
At this point and time, the doctors are recommending removal of the kidney and one of her adrenal glands. One surgeon recommended immediate removal of the kidney. Mary and Tom wanted to first talk with her other doctors and will decide on what surgeon performs the surgery. She never left the hospital where she simply went to take Tom for his test. Instead, she was admitted. She had a great deal of pain last night, but it was helped with pain killers. I will provide hospital details later.
She’s scheduled for an MRI later this morning or early afternoon.
I don’t want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.
I know how much all of you love her (as I do), how much she’s done with this site, how hard she’s worked to provide you with so much wonderful information about Cushing’s — plus what a good friend she’s been to so many of you. I also know that those of you who talk to her may want to call her. She needs time to go through all the preliminaries before being inundated with calls.
I will do my best to keep you apprised of Mary’s situation as I receive information. When she gives me the go ahead for giving out the hospital and is ready to take calls, I’ll pass the information along.
Please take a moment to send prayers for {{{{{MaryO}}}}} (she’s “our” MaryO on Power Surge, too) that everything will turn out all right and she will get through this crisis with flying colors.
Dearest
~~~~~~~~~~~~~~~
From Alice April 30, 2006
* Addendum: 9:30 AM – made some corrections to the 5 something AM post.
What a beautiful show of love and support.
I spoke to Mary last night. She had the MRI as scheduled. She spoke with her own doctor and they decided on a surgeon, but it means going to another hospital. She said she’d probably be coming home for a day before going in for the surgery.
I hesitated to mention in my first post that the doctors said they * think the kidney tumor is malignant due to it’s size – 5 cm. I’m sure many of you surmised that, or why would the emergency room doctors recommend immediate surgery. However, as I said earlier, Mary and Tom wanted to consult with her own doctor first. She was told that if, in fact, it is kidney cancer and is detected and treated early and confined to the kidney, the chances for a full recovery are good.
Considering what she’s going through, Mary sounded good. Lord knows, she’s been through so much already. God willing, this may resolve some of the other health issues she’s been experiencing.
Knowing Mary, when she returns home for a day before checking into the other hospital for surgery, if she’s up to it, she’ll post here herself and provide you with additional details.
For now, I’ve told you just about all I know.
Keep up those prayers!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
11 AM Update:
Mary had a brain scan this morning. She was supposed to have a bone scan today as well, but they’re doing it tomorrow instead, so they told her she could GO HOME TODAY (until she checks into the other hospital for the surgery)! She’s thrilled to be going home and I’m sure she’ll be here posting to all of you herself. You know Mary can’t stay away from computers very long. I’d venture a guess that if they looked inside, her arteries and veins would look more like computer cables (ducking).
We love Mary – so keep on praying that everything goes well, that the tests all yield good results and that she’ll be getting better ‘n better until she’s finished with this whole ordeal
(please, God!)
Reminds me of the phrase . . .
Good, better, best
Never let it rest
Til the good is better
And the better, BEST!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
Update – 2:15 PM:
Spoke with Mary. She’s home. She’s resting. The brain scan, chest/lung x-ray, abdominal scan all came out clean. The only test remaining that I know of is the bone scan, but it’s excellent that the above tests yielded good results.
She’s going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.
Her attitude is very good. She sounds very good and I know, with God watching over her, and everyone showing so much love and caring, she’ll pull through this with flying colors.
It’s easier for me in conveying information to you to do so with an upbeat attitude. I try to avoid thinking of these things as tragedies or things that make me sick. Of course, I’m saddened and sorry that Mary is going through this — and has gone through so much, but such is life. You all certainly know that very well. Nobody hands us a guarantee that life is going to be without problems. And, yes, as the Morton’s salt container says, It never rains, it pours. But my M.O. is to try to keep as positive as possible, especially when in the throes of life’s unanticipated crises.
I believe the expression, “Attitude” is half the battle won.
Mary’s attitude is excellent and I know in my heart she’s going to come through this just fine.
Alice
P.S. An expression I remember my mother using, “The things we fear never happen. It’s the things we never think about that do!”
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 2, 2006
There wasn’t much to add yesterday. Mary was scheduled for a bone scan, but first had to have the radioactive tracer substance injection (I presume it was injected — she wasn’t sure herself). She was scheduled to have that around 10:30-11 AM, ET, and then had to return five hours later for the bone scan.
I didn’t speak with her last night, but she text messaged me around 6:30 that she was finally home and that the surgery had been scheduled for a week from today, Tuesday, May 9th at 9:30 AM.
I’ll post the hospital information as the time draws near.
That’s about it for now. She’s still sounding pretty good and wants to get the surgery done already!
Let’s keep those prayers going!
Alice
~~~~~~~~~~~~~~~~~~~~~~
From Me May 2, 2006
First off, I’d like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say “…and I can’t deny the fact that you like me, right now, you like me!” but I won’t 🙂
I plan to print everything out and take it with me to the hospital as a cheery-upper.
Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.
As it is, I’m currently feeling “normal” whatever that is. If I didn’t know I had a problem, I would think that I was just fine.
I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.
I know that the tumor has been growing for quite a while – it’s very large. I saw the MRI images and even I can tell that it’s not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.
When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an “emergency” (not scheduled weeks in advance) bone scan. Oh, well.
My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital (http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I’m expected to stay there for 3-5 days post op and they don’t anticipate any pesky complications like chemo or radiation at this time.
For now, I’m keeping my normal schedule, avoiding reading horror stories online, eating, sleeping – even napping! – as usual. Sometimes I even forget that I have this little medical appointment next week.
For a non-phone person I’ve talked with so many people these last few days, it’s mind-boggling.
I’m happy to report that all is not lost on the (Cushie) cruise. Someone will replace me – and there will be another cruise later in the year. YEA! My main “concern” on that now is that I’ll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.
In thinking back, I think it’s a good thing that my arginine test was messed up in Sept of 05. If it hadn’t been, I wouldn’t have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.
So, it’s all good
Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like…
~~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 09:10 AM
I’ve been in constant contact with Mary. Spoke to her at 7 this morning. She, Tom and their son, Michael, were on the way to the hospital. Mary sounded very good as she has all week. She’s going in with an excellent attitude.
She’s probably being prepped right now. The surgery is set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 – 4 hours.
Now, all we can do is pray and wait. Tom will call me after the surgery is over. As soon as I hear something, I’ll make it a point to come back and post what I know.
Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it’s over.
God? You listening? You’ve got someone very special to watch over this morning. We’re counting on you!
Alice
~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 12:33 PM
Mary’s husband, Tom, called me at 12:15
He said it’s going to be another 3 hours – around 3:15 PM – before they’re done. Surgery didn’t start as scheduled at 9:30, but more like 11:30. There wasn’t that much he could tell me except that the doctors said, so far everything is going as expected and Tom said, “so far, so good.”
I hesitate to draw any conclusions from that statement because I’m not 100% sure of what the doctors expected, so it’s a matter of waiting until it’s over.
I’ll keep you posted. Keep praying, please!
Alice
~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 2:00PM
Tom called at 1:15, but we had a bad connection. We finally connected.
The operation is over. Mary was being sewn up. Tom said according to the doctor, “the tumor and the kidney were removed.” The doctor is calling the operation a “complete success.”
I asked if they saw any signs of cancer anywhere else because Mary had told me originally that they’d said they might remove the gallbladder, too, but they didn’t remove the gallbladder – which is a good sign.
It appears as though everything was concentrated in the kidney.
Thank God. It’s over!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 9 2006, 07:39 PM
Someone said: “… I told her that I would wait until she was home and feeling much better before I talked to her again and she agreed that she wasn’t sure she would be up to taking phone calls. Again, thank you so much for keeping us updated… this way we can know how Mary is doing without her having to take so many calls…”
That’s exactly how Tom and I feel. Tom suggests people not call the hospital. I wouldn’t even call his cell phone all day. I waited for him to contact me. I know he’s also exhausted. I figured he’d call when he was up to it. He called about 15 minutes ago.
It’s important that Mary get all the rest she can while recovering. Yes, everything turned out well, but she still had major surgery, is on morphine and needs her sleep. It’s important that we all allow her this time to rest.
It just so happened she was awake when he called and he turned on his cell phone’s speakerphone so Mary and I could talk for a minute. I was so happy to hear her voice. She sounded tired, her mouth was dry, but she sounded good.
Because this is a public message board, I prefer not to post details of the room she’s in. If anyone wants this information for the purpose of sending something to Mary, please E.mail me from the address you registered with on the board, and please include your user name. Thanks.
Another thing is that Mary has allergies, so for those wishing to send something to her, Tom and I (and Mary, as we discussed before she went into the hospital) agree she’s better off without flowers.
Finally, Tom said the doctor was very pleased with how her surgery went – that her body was quite robust, that there was very little bleeding, so no transfusion was needed, and he was generally very pleased with the surgery.
It’s been a very stressful day. I love Mary like a sister. We’ve been good friends for 11 years. I cried so after he initially called and said everything went well. I know all of you love and care about Mary, too.
All I’ve thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.
That’s about it for now — she even cracked a personal joke when we said goodbye — she’ll be back to her old self again before too long.
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 13 2006, 08:10 PM
Saturday Update on Mary:
When she’s back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.
She’s doing well. The worst part is the incision which is quite large because the doctors originally anticipated the possibility of having to remove the adrenal gland above the kidney that was removed and the gall bladder as well. However, as I posted earlier, once they got in there, everything was found to be clean so they just took out the tumor and the kidney (as if that’s not enough). So, when she gets up to go to the bathroom, the incision is quite painful. I imagine an incision of that size will take a while to heal. Other than that she says she feels good!!
Additionally, the doctor was awaiting the results of the lymph node biopsy (just to be sure) and he told her yesterday, “everything looks clean.”
She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!
Spoke to her after she arrived home (sorry I didn’t post earlier, but also have my Web site to deal with).
She sounded great and was glad to be home especially since a new person checked into her room yesterday and Mary wasn’t able to sleep all night.
That’s all for now – and all very good news, thank God!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~
From Me: June 17, 2006 post-op:
Thank you all for your prayers, good wishes, cards, phone calls, gifts, general “cheery-uppers”. They all really helped me on my road to recovery.
I do have a ton of thank you cards to send out to lots of people – I’m very slow at that. Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse 😦
I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren’t so great. Of course, they were awful before. I can no longer take the GH even though I’m deficient. In 5 years (if I survive!) I can take the GH again, supposedly.
I’ve had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed – at least I think that’s what set it off. If I hadn’t had all the blood and pain for one day only, I’d have had no clue that I had this cancer and who knows what would have happened in that next week.
I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.
During my time of thinking, I have also been thinking about making changes to the boards based on what I have heard was going on here. I am not yet sure how these changes will manifest themselves but I do know that bashing others will not be tolerated. More on this later, in another area.
Again, thank you for all your support!
~~~~~~~~~~~~~~~~~~~
From Me July 6, 2006
Since I recently had surgery for kidney cancer, I’ve been looking around for another board to read and talk about this with other survivors (hopefully!) I haven’t found anyplace I’d like to visit or feel comfortable with yet, so I decided to make a new area here.
I know – or I think I know – that no one else here has had kidney cancer, although I know at least 1 other person has had a kidney removed and several others have reported kidney stones and other possible kidney diseases.
I’m sure that my recovery will be much the same as for any other major abdominal surgery, although I’d like it to be faster.
Before my surgery, I didn’t have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe… Just boom, there it is. Cancer.
Now that I’m about 8 weeks post-op, I’m thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn’t a cell hiding out.
I know I have to be careful with meds – no NSAIDs so my arthritis is worse. No GH – it’s contraindicated for 5 years…assuming I’m cancer free then.
I’m supposed to be eating less protein, more fruits/veggies, drinking more water.
And I’m supposed to avoid playing football and other things that might damage my remaining kidney.
Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.
Sometimes, at night when I can’t sleep, I wonder why I was lucky like this. What haven’t I done with my life that I should. Seems to me that I’ve accomplished what I should already.
And, in the night, I worry about the cancer returning, taking my other kidney or worse.
At this time, there’s no standard chemo unless it’s metastasized, although there are some promising clinical trials and radiation doesn’t seem to work for this kind of cancer, so if it returns it’s more surgery.
I suppose I could/should have put all this in my blog, but I put it out here in case anyone else should need this in the future. I hope not!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From me Aug 19 2006, 01:25 AM
Thanks so much for asking!
Unfortunately, I haven’t read the boards much lately – I’m spending most of my online time deleting/banning the InstaChat intruders.
I have been working on the websites, though, and that’s always fun! I’ve even added a new one to the roster and it has some cool stuff on it. New features to be announced in the upcoming newsletter.
I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.
I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.
I’m having trouble sleeping (1:20 AM here, now) although I’m always tired. My mind plays all kinds of tricks in the night. Those InstaChat people don’t help, either! When I wake up just a little, instead of falling back asleep, I’ll go check to see what they’ve done.
Whine, whine!
On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!
Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…
~~~~~~~~~~~~~~~~~~~~~~~
From me May 8 2008, 11:07 PM
I am feeling very maudlin, a bit down and depressed. It’s very nearly the anniversary of my kidney cancer surgery. I posted this in my blog a few days ago:

I’ve been feeling weird for about a week now. Last Friday, I went through the whole “Sending Prayers” topic (MKO’Note: this thread) that my good friend Alice started for me.After I read that, I started reliving all the kidney cancer events…again. I know I shouldn’t do this. My counselor says that this is a very stressful thing to do and it’s not good for me, for anyone. But I do it anyway, especially the pituitary and cancer surgery anniversaries. I wish I did this with good stuff, could relive that instead of the scary and painful.
After I finished rereading all that, I went back to my post in the cancer section: I guess I’ve talked about this more than I think! I just wish there was someone I could get answers and support from. I have never met anyone in real life who has shared my particular brand of cancer, haven’t talked to anyone on the phone or emailed anyone.
I even asked at my local cancer support center about support for me – they have all kinds of meetings, mainly for breast and prostate cancer, but other kinds, too. But they said that there weren’t enough kidney cancer people to have a meeting. The one and only book that the library there has on kidney cancer was given to me by the author to donate there.
Lucky me – two rare diseases that no one gets. According to statistics I should be a black man who smokes and works in the iron and steel industry or is exposed to certain chemical and substances, such as asbestos (a mineral fiber that can be used in construction materials for insulation and as fire-retardant) and cadmium (a rare, soft, bluish-white chemical element used in batteries and plastic industry), also increase the risk for renal cell carcinoma. I should have polycystic kidneys and not drink the copious coffee.
So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?
And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.
Although I’m not afraid of death and would like it to be as peaceful and pain-free as possible, I still dream at night that I’m dying or have died. These dreams have been going on since before the cancer and I can’t seem to shake them although I’m taking them more in stride now and can go right back to sleep.
And from last year’s post on this topic, these still concern me:
What if the lung nodules that “aren’t growing” turn out to be something on the next scan? Is the stomach distress I’m currently feeling a cause to ask for my next colonoscopy a bit earlier?
Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?
What if, what if…?
Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.
Had they told me in 2006 that I only had a year or two to live, I’d have thought it far too short a time. I guess how long a year is depends on the frame of mind!
I hate going for scans because they could show something but I get nervous when there are no scans because there could be something else! Seems like my mind is setting me up for a lose-lose situation.
I’m sure as I get closer to Friday that other thoughts will come to me. I am so grateful that I’ve had these two “bonus years”. I feel like there is so much still to do with the Cushing’s sites and I will never get them done in my lifetime but I plan to keep trucking along!

And from Wonderful Words of Life…
I’m acquiring the title of an old hymn for this next post.
After I was finished with the long Cushing’s diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
i thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.
This verse has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. On my birthday, there was “my” psalm so I had to buy this book!
Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

I carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver. On the other side there is an article I found after my kidney cancer. I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

The Best Day Of My Life
by Gregory M Lousignont
Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!
Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.
I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.
Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.
Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.
Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.
I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.
And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!

When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.

Bee’s Knees 4

This is a continuation of an ongoing knee issue.  It started with Bee’s Knees and went on to Bee’s Knees Continued.  I’m hoping to end my knee pain in the very near future.

What’s happened since the “quick kneecap recap” below:

September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection).  I did notice some sleep issues that first night, probably since I had the cortisone so late in the day

It was wonderful and got me through a cruise to Maine and Canada.  In Bar Harbor, I overheard some women talking about their knees.  One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee.  I’ve asked a couple doctors and Dr. Google.  No one seems familiar with that idea at all.

It also got me through our son’s wedding in October, including climbing stairs! 

It also produced one of my only smiling photos, ever!

December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection.  We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots.  He hadn’t thought I should get this.  But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.

By then, the knee pain had returned, anyway, so no issues

March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women”
This is very good – much stronger than the one I mentioned below on September 8, 2018.  The only real issue I have with it is that it bent, so I have to bend my knee to put it on.  The other one is completely straight and just wraps around.

The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.

I do love that they’re making products for people with latex and neoprene allergies,  though!

 

April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.

On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.  Not fun!

When I got home, Tom was sure he could do it…but he couldn’t either.  He drove it in to Advanced Automotive.

One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.  

Could have been even more serious!

They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.

Car runs like new now 🙂

So, I missed my first appointment but got a “new” car.

April 10, 2019, I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.

I think over time, the elastic may stretch out, making it harder to keep on.

The whole is covered with a washable velour-like fabric.  The price was reasonable enough that I could buy another one if/whey that strap expands too much.

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

During this time, my pain was so bad that I was considering surgery – later.

April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection).  This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.

I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September.  These look like places I will want to walk!

She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months!  I could have saved myself a lot of issues in early 2019 had I known that   So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.

For reasons known only to her, she did the injection in my inner knee-cap.  Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.

She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.

Death Dreams.  I don’t think I’ve posted about these before but I used to have them quite often.  I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection.  The first was about 6:00 PM.  I’d fallen asleep for a nap and DH was talking to me (in real life).  I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service.  I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.

The next was similar about 3:00am on 4/23/19.  I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was.  I just knew I needed to take “something” to stay alive and wasn’t sure what that was.  I looked through my phone for ideas and checked the meds by my bedside.  Nothing.  Finally, I woke up more completely and realized it had been another dream.  I also picked up my Kindle and went back to sleep for another hour.

This morning (4/23) there’s still a bit of discomfort but I can deal with that.  I also had a bit of trying to run to the bathroom a little quicker than usual.  I also don’t remember that from before but I assume it will go away soon.

I hope this shot lasts nearly 3 months, too!  That would take me to mid-July. 🙂

I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:

 

Starting September 2, 2019, if I get 4 shots a year they would be: September, December,  March, June, September.

Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May,  September

Stay tuned for…


A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.  Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/

May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

 

March ~ Kidney Cancer Awareness Month

 

Kidney Cancer awareness is very important to me, because I learned I had it in 2006.

I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

 

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

 

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

 

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my cancer in addition to my kidney.

 

More than 12,000 people in the UK are diagnosed with kidney cancer each year, according to 2014 statistics.

And although 42% of cases are deemed “preventable”, only 50% of patients survive kidney disease for 10 or more years.  I will celebrate 13 years next month, on May 9!

It’s the seventh most common cancer in the UK and is much more prevalent in males.

But do you know the warning signs of the potentially deadly disease?

Here we reveal the 12 main symptoms of kidney cancer:

1. Blood in your pee  Not until the day I was diagnosed.

You may notice your pee is darker than normal or reddish in color. This could also be a sign of chronic kidney disease and bladder cancer.

2. A persistent pain in your lower back or side, just below your ribs No

3. A lump or swelling in your side (although kidney cancer is often too small to feel) No

4. Extreme tiredness (fatigue) Possibly, although I assumed it was from Cushing’s

5. Loss of appetite and weight loss No

6. Persistent high blood pressure Yes

7. A high temperature of 38C (100.4F) or above No

8. Night sweats No

9. In men, swelling of the veins in the testicles Nope

10. Swollen glands in your neck No

11. Bone pain No

12. Coughing up blood No

If you are concerned about any of these symptoms you should see you GP, they will carry out a series of tests, including urine and blood tests, in order to get an accurate diagnosis.

What are the treatment options?

The treatment will depend on the size and severity of the cancer and whether it has spread to other parts of the body.

These are the five main treatments:

1. Surgery to remove part or all of the affected kidney Yes, all plus some other stuff

This the main treatment for most people

2. Ablation therapies No

Where the cancerous cells are destroyed by freezing or heating them

3. Biological therapies No

Medications that help stop the cancer growing or spreading

4. Embolisation No

A procedure to cut off the blood supply to the cancer

5. Radiotherapy No

Where high-energy radiation is used to target cancer cells and relieve symptoms

For more information go to nhs.uk/Conditions/Cancer-of-the-kidney

The 12 symptoms adapted from http://www.dailystar.co.uk/health/605586/Kidney-cancer-symptoms-treatment-males-females-early-warning-signs

Rare Disease Day 2019

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

My husband also passes out cards and brochures.

Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/

What are YOU doing for Rare Disease Day?

 

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Bee’s Knees 3

This is a continuation of an ongoing knee issue.  It started with Bee’s Knees and went on to Bee’s Knees Continued.  I’m hoping to end my knee pain in the very near future.

A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.  Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/ May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.