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Friday, August 13, 2010

In Limbo Land

Limbo land...that is where I am at today.  I am glad for the break, glad I am finished with chemo.  Now I am waiting to start radiation.  First I am seeing a urologist to deal with this mystery phantom UTI which the doctors say isn't that at all.  Even though I have taken over 50 antibiotic pills, they say I have no infection.  I do however have unexplained pain.  I did look up on the internet what the symptoms of bladder cancer are and they are the same as a urinary tract infection.  Of course the doctors hate it when you do this (as does my husband).  They think you are paranoid and that you think every little ache and pain is the cancer spreading.  No, doctors, I am not paranoid.  However, I have been dealing with this pain and UTI symptoms for over ten weeks without any answers or solutions.   The nurse who said it definitely was NOT cancer would not give me a referral to a urologist (she works directly for my oncologist and surgeon).  I asked her how she knew it wasn't cancer.  She acted irrated that I even asked.  Here's the deal, I doubt that it is the cancer spreading, but I do think I deserve to know how she is so sure. I remember a radiologist that read my mammogram and sonogram that was so sure my "lumps" were not cancer either!   She said I had to go to my regular doctor and get a referral.  PLEASE!!!!  So what they are telling me is they can treat me with strong antibiotics (ones that happen to cause lung damage as a major side effect).  They can give me numerous tests, switch my antibiotics back and forth, give me chemo for cancer, but you can't send me to a urologist for symptoms that started during my cancer treatments.  I have to go to my regular doctor for this, who happens to be a nurse practitioner.  As a matter of fact, I think she is the only person I have seen who doesn't think I'm a raving paranoid idiot.  Carol Dvorack, the only person I completely trust at this point in my medical journey with this cancer.  She listens to me, takes the information and makes an informed decision based on her knowledge AND what information I am giving her.  She is the one who told me to see Mary Brian, my breast surgeon.  This was after I told her that I thought the radiologist did not know what he was doing by telling me to come back in six months after my mammo and sonogram.  She did not think I was paranoid, and it is a good thing since two weeks later I was diagnosed with triple negative breast cancer, with grade 3 tumors dividing and replicating at a 90% proliferation rate.  Normal breast cancer tumors are at 10-20%.  Being your own advocate for your own health care is a must.  I am so sick of doctors who think they are God and think that the patient's knowledge has no value.  I may have not gone to medical school, but I know when something is not right in my body.  Which brings me to this.  When I visited with the plastic surgeon in San Antonio, I had to take all my medical records and every test with me to give them.  The scan of my kidneys showed a 4 mm kidney stone that was not blocking anything at the time of the scan.  So you think that since I have been having unexplained symptoms of a UTI for over ten weeks now...probably more like twelve, with negative urine test for bacterial infection, they might have looked at the scans of the kidneys and urinary tracts.  Just a thought, people!  Maybe it is totally unrelated, but nurse (I will refrain from mentioning her name)...please don't act like I am paranoid and know nothing.  By the way, I was never told about the kidney stone by anyone.  I get it, I have cancer...it is not important at this point.  But it would have been nice to know and I guarantee this nurse has no idea.  Oh well, I guess I am irritable.  This is probably because Diagnostic Health in Keller who did my mammo and sono called me to confirm my six month follow-up (the one that the radiologist ordered who said I had 3 benign "nodules").  I explained to the lady that I just finished chemo and I had no breast at this point and would never be back there again.  So I had never cancelled the appointment; I have been busy.  So the lady who confirms all the appointments called me and we had a discussion.  She was actually very nice.  I cried when the conversation ended.  I guess if I had not followed my instincts, I would be dead right now or I would be finding out on monday that I had stage 4 breast cancer.  I have learned to count my blessings.  God has given me a strong gift of discernment.  We have had so many blessings the past six months.  There are too many to count.  But I know they have been plentiful.  Thank you Lord!  Until next time my friends...

3 comments:

SingingWarrior said...

yep. u have to push until you get answers. my friend who had lung cancer passed about 2 wks ago. shortly before, the oncologist's nurse found that the doc who did the original xrays 8 months before he was diagnosed had altered the findings. yep the mass was on the xray but the mention of the mass had been removed from the report. work comp fraud? Doc wouldn't have gotten any money from work comp if cancer had been diagnosed instead of a work injury. Oncologist said it would have been operable 8 months prior to cancer diagnosis.

Ellie K. Belfiglio said...

Oh, My dear child,
You are not paranoid. Nobody knows your body like you do. If you feel something is not right; keep on insisting. You can threaten them with lawsuit. I don't know what it is but I know it must be tested. Do what ever you can to see a specialist. We just pray that it is nothing serious and is just a UTI. But don't give up. Don't let these unfeeling medical community to tell you things for their financial gain. I see you tomorrow, baby. I love you. Hang in there. If anyone can do it, it is you. Go for it. Love you so much that it hurts.
From here to there.

willow58 said...

O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!

Refrain:
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conquerors we are!
His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!