You Just Don't Understand...Unless You've Been There...

What's it like to be a breast cancer survivor, or any cancer survivor - and go thru more testing and possibilities that life could change again in a flash?

You just don't understand, unless you've been there!

Doctors like to give you hope, but now I've had an experience four times over the years, that hasn't turned out exactly as I would have liked.  This experience is - waking up from a procedure, and not getting good news.

Each time I heard doctors say at an office visit before the procedure, "we'll do a biopsy, but it doesn't look like anything serious."   Each time the news that I got when I woke up in the recovery room was, "I'm sorry, it's cancer."

So if and when I need to have a new test - whether it's a biopsy, an MRI, a CT scan...my stress level rises.   I don't like those MRI "tunnels."  You know what I mean?  Lay flat, very still, going inside a tube, hearing loud noises - even with the music that they put on for you.  Bang, Bang, Bang.  It's annoying and nerve wracking.  Even choosing my favorite music doesn't help, when I lie there and try to listen to the tunes thru the head phones.

Last month I was on this merry go round of a medical adventure.  Yea, I'm calling it an adventure.  If I didn't call it that, I'd say it was a shit show.  Plan and simple.

You see, it started pretty simply.  Following my hip surgery in October and 8 weeks of recovery, it was more clear to me than previously in the year, that one of the reasons I'm having trouble walking is because of back pain, not just my hip.  I was on crutches for 8 weeks following hip surgery, and my back didn't hurt much, and walking was pretty easy using crutches.  As soon as I was cleared by my doctor to put the crutches away, and begin walking, the back pain returned.  I have a pretty high pain threshold, but this was pain that keeps me from getting up, taking a step, turning over in bed, and walking thru a grocery store.  It's hard to ignore, and hard to accept.

I understand I'm getting old.  But to think that I will suffer with this the rest of my days is more than I can bear.

So, I decided I needed to find a back/spine doctor in Rhode Island.  Earlier in the year I consulted with a neurosurgeon in Arizona, and orthopedic surgeons in Illinois.  I had an MRI showing some problem areas in my lower spine.  I was ready to meet with a doctor in Rhode Island because I really would like to stay home and have this surgery, if I'm going to have surgery.  Simple? I thought so.  I needed an opinion from a doctor near home, in Rhode Island.

A name of a reputable spine surgeon was given to me from my physical therapy folks.  I called the office of the doctor that was recommended, and requested an appointment.  I was asked if I had an MRI, and I said yes, I have a CD of my MRI, and it was taken in February.  I was told an appointment could not be scheduled because the MRI was too old.  I would need a new one.  Ok, fine.  I would need this doctor to give me a script for a new MRI of my lower spine.  But I was told that was not possible, because I wasn't a patient there.

Hmmmmm.....

So I called my hip surgeon and asked him if he would send thru an order for an MRI of my spine.

Of course he did, and I had the MRI.

Within a few days my Internist called me to tell me the MRI of my lower back showed a small nodule on my adrenal glands.  She thought it was something we might want to look into further, to be certain nothing more serious was going on.

She ordered another MRI of my abdomen, focusing more on this area.  Also, some blood work to be certain my counts were okay.

Within a few days I had a call from her again telling me the small nodule did not show up on the 2nd MRI, but something else was seen.  An enlarged bile duct.  It measured 1.2 cm.  Normal bile ducts measure 4 mm.

We chatted for about 20 minutes about what this could be caused by.  Possibly it was just scar tissue from my gall bladder surgery years ago...but that was more than 20 years ago.  The concern was that it was quite larger than what is "normal."  So she was going to consult with her colleagues and get back to me, wanting me to see a gastroenterologist.

In the meantime, I was called back by the back/spine surgeon's office and given a date of Jan. 15th for the consult on my back.  Yay!  I was going to get another opinion in Rhode Island!  They received the MRI and agreed I was a candidate to see this doctor.  Ok! Great!  The appointment was halfway into January, but I'm willing to change my flights to Arizona so I can see him.  So I did - I moved my flights out another week.

Meanwhile, the gastro doctor's office called and said I would need to have a consult with her and decide what next steps should be.  All the while I'm wondering if I have a serious bile duct problem.  I've heard about bile duct cancers.  They are not something one survives.  With my cancer history it was difficult to NOT go to that place.  Bile duct cancer.

Now we're in to January, the holidays are over and I see the gastro doctor.  She's awesome, well spoken, listened to my concerns, took time to explain to me what she would do and we agree that I need a endoscopy as well as a endoscopic ultrasound.  The new scopes can go much further and measure, take samples and see all the areas that need to be seen.  Her office is awesome to call the hospital and schedule me for the following week for this procedure.

More blood tests are ordered and once again I'm off to the lab.

My stress and anxiety is growing thru all this.  I keep telling myself that I should not worry.  After all, worrying is not going to change the outcome.  What is going on - or not going on - is there.  Not gonna change with worrying.

Once I have the hospital appointment I have to cancel the appointment I've waited for to see the back surgeon, because it's on the same date!  Very discouraged, I called that office and of course they couldn't move my appointment to earlier in the day - it would have to be rescheduled for another week or two.  Well, I'm not waiting and postponing flights again.  I'm just seeking a consult, and I'm not ready to make a decision about back surgery - so I decide to reschedule that appointment to March, when I'm home for 10 days in RI.

The hospital appointment is for 2 pm on January 15th, which never is easy to have these appointments late in the day,  because you can't eat and you just wait all morning to go to the hospital and find out your fate - do you have cancer or some other serious issue - or not?

So, now I head to the hospital,  a new hospital, one I have not been to before, and that is always a little stressful for me as well.  I've been thru a lot, and I know all the things that can go wrong when in a hospital.   Of course I'm trying NOT to think of these things.

For this procedure I'm wheeled in to an operating room and the anesthesiologist comes in to talk.  I ask to be put out as soon as possible (my stress level is high, just let me go to sleep), but he says they have a policy where they have to have a "call in" with the entire crew in the OR, and until that happens, I have to wait.   It seems endless to me.  I'm starting to tremble a little as I think about what I could hear when I wake up - words I've heard before.  I wonder if this is the beginning of the end for me.  I wonder what I'll hear when I wake up.  I wonder how I'll tell my family.  Tears start to fall.  I think of the people I've lost that I've loved and I thought about how my family will feel and be sad that I'm sick again.

Next thing I know I'm waking up but I'm not sure where I am and I'm remembering something I'm dreaming - about a baby and some family members.  None of it makes sense to me and I can't put it together while I'm trying to wake up and understand what is being told to me about the outcome.  Fairly quickly I realize nothing serious was found, that I'm going to be okay.  That my bile duct was measured and it was not as enlarged as recorded on the MRI, it was still a little larger, but nothing to be worried about.

The relief I feel is beyond words.  More tears of relief....and the smile on my face as I talk to the nurse tells all.

So now it's 6 weeks from when I first started to find a doctor who I could consult with for my back.  The appointment that I was given had to be rescheduled for March, and I made the decision to travel to Arizona because I was so exhausted and worn out from the stress of all the medical appointments, I couldn't possibly think about talking about my lower back/spine issue and what options I could consider for improvement.  It can wait.  I'll give myself more time to heal emotionally and physically from the hip surgery and this medical merry go round.

I've heard it said aging is not for the weak of heart.  Very true words.