I am Still Alive and Kicking

Just a short note to let every one know I am okay. I have heard from some readers out of concern for me because of my lack of current blogs. I have been dealing with depression to some degree and just not motivated to write or delve into my emotions. Crazy as I have always used writing as a tool for just that, but couldn’t muster up the time needed to do so. Maybe just plain laziness. Depression causes that too ya know. ;o) I will get caught up on here very soon. Lots to share!!

 

Marvelous Marvelous Baby

APRIL 7, 2011

It was actually wonderful to get my PET scan results last week. Can you believe it. Finally something good. Had it done on March 21, but was in no rush for the results for my situation has not been so positive for a while now. I waited for my regular monthly visit with Doctor Browne.  This will be pretty plain and simple. It showed there is absolutely NO new cancer growth anywhere in my body. Now as for the cancer that has already been in place, it all has retreated. My body fought a good fight and the cancer had no choice but to back off the front lines of battle.

My last scan back in October was not a good one. Cancer had progressed drastically so to hear this news was such a shock. A wonderful, blissful shock. For the first time ever in 5 years my breast where it all started showed absolutely NO signs of cancer at all. Even though the tumor had shrunk to oblivion, the scarring it created had formed a hard knot and it always showed some degree of uptake from the radioactive serum in past PET scans. So this was just great news to me. Cancer in the five badly damaged vertebra of my spine were also unremarkable, no uptake values registered.  The cancer in my sacrum and left hip had deduced as well, but still showing some activity.  But the most important area of concern for me right now is my right hip and pelvis for surgery sake.  As it stands my last scan showed the uptake value in my right hip as 9.7 (very high) and the current results showed 3.1. Praise Jesus!!  I couldn’t ask for anything better (well I could, but I am happy with this). The good news does not stop there. All the bony lesions that were detected only showed uptake activity from their bone scarring (called sclerosis). Meaning it’s kind of a bones version of a scab. The bone cancer lesions are healing. Can I get an Amen! 

That is all I needed, or should I say the surgeon needed to hear to know that at least the cancer will not be a concern for my hip replacement and reconstruction.  Do you think God was listening? I know he was.  He heard my prayers and he most definitely heard all of ya’lls prayers.

There was one suspicious area. A minimal vague 2mm density was seen in my left upper lung, however it did not show any activity, no uptake. So it’s just something to keep an eye on. Maybe nothing at all. Maybe I swallowed a pea and it went down the wrong tract.

Still waiting on the authorization from my Primary care Physician to have my CT scans, and nuclear med testing that the surgeon ordered.  I saw that Doc on March 28th. She gave me a referral so my insurance would cover those scans and tests my surgeon ordered. However on the referral she was sending me to an imaging center in Sarasota and my Surgeon specifically stated I needed to have them all done at the hospital where I will be having the surgery. I told her this at my appointment and she said no big deal just use it at the hospital. He wants everything there so it can be on video in the surgical suite during the operation, and so that it all is available to the other surgeons he is calling in to assist with my surgery. When we tried to get this cleared up it was noticed an authorization code was never put on the referral form. A mandated requirement!! The woman responsible for handling this at my Primary Care Physician said she would have to start all over now. Start from where I’m wondering?  It was easy enough for them to give me the referral at my appointment so this should not be a week long project. She should have put the authorization code on the form to begin with, go back get it and fax it to my surgeon so they can set everything else up.  I mean really I am a human being here with a fractured hip!!

Whoof!  Sorry I went from such great news and happy happy to getting pissed off. Well that is a perfect example of that “not so positive” series of events I have been dealing with.  So still great news on the cancer front and still waiting not so patiently on the rest.  Oh yea I have a great tan started already before summer. Now I won’t look so sickly while in the hospital. ;o)

 

Four Wheelin’ it into the surgeons office

I saw Dr. Lowry (my surgeon in St. Pete) on Wednesday. LaTrisha wheeled me inside via my wheel chair. He had to take me seriously, so I couldn’t just walk in there with my canes. Oh yea note the “s” in canes. I had to buy two matching canes because I can no longer walk with just one (surely could not be seen with two mis-matched canes). That’s how bad it has gotten. I just can’t put any weight on my right leg any more. Even with the canes giving me the ability to walk better and reduce some pain while mobile, I was not going to take any chances. So the wheel chair it was, revved up and ready to go. When he examined me I made sure he knew I felt the pain. More so than I actually did, but I couldn’t have him telling me I still needed to see a neurologist about “not feeling enough pain”.  I also made sure he was aware of how much pain medicine I take on a daily basis. It is in very high doses, so of course that helps relieve some pain. He took note and it seemed to have enlightened him. Now to the nitty-gritty.

Well you know how a femur (large thigh bone) has a neck with a femoral head attached to that. The head is what goes into the socket in the pelvis which forms the hip. My  head had completely disintegrated, and now the neck is gone as well. So what’s left of the upper femur is grinding against my pelvis, being held in place by the rod that was previously placed through the neck and head. And said rod has grinded it’s way through my pelvis (through to the other side tapping my pubic bone. There is nothing left of my upper femur nor my pelvis to even foster a hip replacement. Know what I mean. The surgeon was thrown back a bit after reviewing that MRI and the x-rays his office did. He could not believe the destruction he saw. He thought it was bad before, but this was beyond that. He said we are looking at some very extensive work.  He ordered additional specialized CT and bone scans, as well as a nuclear test, at the hospital where I would be having the surgery in St. Pete.  He said after he gets those results he will need to have a consult with two or three of his associate surgeons to determine what could possibly be done to repair and rebuild. If even possible at all. He said it’s not a surgery he can perform on his own any longer.  They will need to determine if they can rebuild my pelvis to make it receptive for an artificial hip. Another major concern is that I might require a total “Femur” replacement too. First time I broke my femur, they had to put a rod in it down to my knee. Then when I broke it again, they had to get that broken rod out, ream my femur bone a little bigger to put a little larger rod in it. That bone can not be reamed any larger now, there is nothing left (I have small bones). So normally in a hip replacement the new artificial ball is put into a receptive socket in my pelvis/hip to form a new hip joint, it is that apparatus that is attached to the femur bone by a pointed metal spike hammered into the upper femur. It’s looking like that will be impossible to do with my bones. When they remove the rod that’s in it now, my femur bone may very well break, or not be strong enough for them to hammer the hip replacement spike back into it because the cancer has left my bones too brittle. In that case I will need a very rare total femur replacement. I looked it up!!  It is made from medal and heavy plastics with the hip prosthesis at top. They would have to pull all the muscles, tendons, ligaments, etc. from the bones and remove my femur and my entire knee. Then there is all the veins and such. Brrrrr, just the thought of it makes me shake.  My knee would then just be a metal joint as part of the new femur replacement being attached to my shin bone via a spike hammered into upper part of that bone  with the knee joint above it and so forth upward. That’s just part of the rebuilding. They have to see if they can make a socket in the brittle pelvis to form the hip like I mentioned above. All day surgery and may require follow up surgeries. The recovery time will be very very long and will require extended physiotherapy.  With all that said however it all comes down to whether the insurance will pay for all that. Just the prep work and scans ahead of the surgery will be into the $20,000 to $30,000.’s. I am having a PET scan on Monday (the one I missed last Monday due to 104.2 fever). He has to know where the cancer is in my bones. If that area is riddled with cancer no surgery can be performed for it won’t heal.   So those are the possibilities and just that till everything else is done and the doctor says Okay, he has a plan and we can set a date for surgery.

That high fever really had my oncology nurses alarmed, so before chemo yesterday they ran a set of blood cultures to see if I have blood poisoning, bacterial infection in my blood or possible fungi. Won’t have the results till Tuesday. If that is the case I can’t have anything done till that is cleared up and that can be life threatening in itself. The Doc started me on strong penicillin based antibiotics yesterday just in case. I am normally allergic to penicillin but I have not tried any in over 20 plus years so I said go for it. I need the strongest possible so there is always the chance I have outgrown my allergy to it. So far no serious side effects from taking it.  The darn folliculitis of the scalp is coming back (hair follicles get infected, brought on from the chemo). Talk about some crazy itching. The nurse said these antibiotics should take care of that too. Normally I take a different kind for it.  

My mind has been reeling. Just have to focus on the here and now and getting all this leg work done. All the stupid referrals needed and such before I can move forward with the other stuff. Have to see my Primary Care Physician to get a referral for the CT scan and so forth. Always one step backward to get one step forward and in my case I don’t need to be taking all these damn steps it’s too hard to freakin walk. LOL 

Basically right now I really don’t know a damn thing. It’s all up in the air till we can determine what is really required and what if anything is really surgically possible. So will get my scans done and will go from there.

 PS:  UPDATE  – The Blood Cultures came back negative. So it’s still undetermined why I had such a high fever for those 24 hours.

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