Cancer changes everything the minute you hear those words. This is how I chose to deal with those changes or over-ride some. Words are my friend, I find great comfort within them. Using the written word, right here, is where I will share my every day experiences in living with cancer. How I deal. My treatments, medical processes, my alternative measures, my triumphs, my failures, All sprinkled with a sense of humor, love and laughter (sometimes). So I ask if you might, follow my journey and take a colorful walk with me as I travel this path with terminal breast cancer. After all Life goes on….
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!!
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)
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.
- A Guide to Hip Anatomy (everydayhealth.com)
- Johnson & Johnson’s Quality Catastrophe (businessweek.com)
The imaging center where I got the MRI shared in detail with my doctor not only the immediate results but why they were unable to get the second set of contrast scans. So that is what alarmed my doctor to feek the need to send me to the emergency room via the message she left on my voice mail the night after I had the MRI. See my oncologist has never seen me cry. In the (almost) five years she has been treating me I have never cried in front of her, and if I ever felt like I wanted to I just held it in. No matter what the news was or what the treatments were doing to me, No tears. So she was very alarmed to hear that I was sobbing during the scans from the pain I was experiencing. Top that with what the MRI actually unveiled and she thought it may just be causing me so much pain in general. When she never got the call that I was in the ER, she knew then it was not as bad as she had speculated. She told me that was one thing she was confident in knowing about me. I would go seek medical help if the pain threshold was something I truly could not bare. So obviously I was okay.
Now for the actual results. I have bony destruction and a new complex fracture to my right hip with superior displacement of the femoral metallic component, impacted in the iliac bone. Meaning the metallic bolt (placed in Sept 2007 after a hip fracture) has worked it’s way through the hip socket (acetabulum) like a drill, so I have a hole in the rear/bed of the socket, in which has caused the impact with the interior bone and superior fluid in pelvis. The femoral head has completely disintegrated which has allowed the bolt freedom to create havoc. It has also created a fan spread shape inside what once was a smooth circular socket. There is fragmentation/destruction of the acetabulum (again the actual hip socket). There is a capsular (gel like sac surrounding the hip joint) tear which has caused a large amount of fluid in the joint area. Partial tear of the abductor cuff (abductors are the muscles of the outer thigh that move the leg) with associated edema (an abnormal excess accumulation of serous fluid in connective tissue and cells) in the gluteus minimus and to a lesser degree the gluteus medius. There is also a partial tear in the iliopsoas (a major muscle group that run from the lumbar portion of the spine to the femur. The main action is to flex the thigh at the hip joint ) near its insertion to the lesser trochanter (a small bony protrusion on the upper femur). The iliopsoas is what keeps my leg attached to my body. That’s it.
Pretty serious stuff. Basically everything is falling apart in there. Before long I won’t be able to use the leg at all. The muscles have had to work double duty to help me walk and as this MRI shows they are just worn out and tearing. No bones left to call it a hip really. No proper rotation. I can’t even go to an emergency room to expect to have it repaired for lack of traditional insurance. As I have noted in the past I searched for months before I finally found a surgeon to do a hip replacement that would not only accept my insurance (that’s through Medicaid) but also agree to see me despite my cancer. And he is 90 miles away. So I know if I go to a local hospital I will be referred somewhere else. Again another example of being treated like a second class citizen in America. Even my oncologist had to agree with me. So we opted to contact said surgeon I had already seen to see what he will do. Dr. Browne called him and had to leave a message. So she left a detailed message and faxed the results to his office. Hopefully one of us will hear from him on Monday or Tuesday. Now remember that hip replacement surgery never happened because he felt I was NOT feeling enough pain (Have you ever heard of anything so ludicrous) for how extensive the damage was (even back then, Nov 2010) and wanted a neuropathy work up by a neurologist before proceeding. I could not find a Neurologist in my insurance network of doctors. Nor could I afford to pay to see one for I was quoted almost $400 just for the initial visit and was given a price range from $350 to $800 for the actual testing. So I put that on the back burner. Now lets hope and pray that he will consider doing surgery since there are new fractures to contend with and I am in much more pain. Really don’t these doctors have hearts? I am a human being, with broken bones and I can barely walk. All I can do is pray that we hear from him and it’s a go.
Since I can’t have any surgery while getting the Avastin form of chemo, we have pulled that out of my regimen. Supposed to be out of my system for 28 days before having any surgery, or dental work. Last week was my week off, so at least I am 7 days in with out it thus far. Might have to wait 3 weeks before I can even have surgery.
- Femoroacetabular Impingement (FAI) With Labral Tear & Bone Spurs, Arthoscopic Surgery Information (patrickruddy.wordpress.com)
- How Common Is Hip Replacement? (everydayhealth.com)
Just shy of a week before Christmas I had a run in with my dog Coach. I was standing bedside talking to my daughter Skyelar. Coach was sitting in the doorway just be a part of our conversation. Not really paying attention to him I turn to walk toward my closet, just at that very same moment he had decided to run and jump on my bed. My right side (already damaged hip) was wide open for him as he came barreling through mid air in his attempt to jump on the bed and made full contact with me instead. Just a note: Coach is a large muscular 97 LB Chocolate Lab. The impact with my hip bone and femur hurt like hell. He knocked me down luckily on the bed, and he bounced off to the floor. It took a moment to get myself together enough to check on him, I figured that really must have hurt him. Direct blow to his skull and chest. After a few deep breathes I shook it off and he did the same. Life went on. Then about 4 days later I was feeling some strange discomfort in my hip area so I reached down and rubbed my hand acrossed it, it started to freak me out. There was a huge bump (5” by 3”) and it felt hard and spongy. It rattled me a bit, thinking OMG a TUMOR. I sat on that for a few days keeping it to myself. Then Skyelar noticed it on the eve of Christmas Eve as I was standing in her bedroom before bedtime in a t-shirt and undies. It freaked her out briefly when she first saw it, but then she reminded me about the impact I had with Coach. Like WOW, why didn’t I even remember that. It brought me a little relief. Yeah it could be something as simple as that. I did not want to worry any one right there with Christmas upon us, so I asked Skye not to say anything to her brother and sister or grandma. (strange as it is with Skyelar being the youngest, she is the one who worries less about matters) let it slide. Then two weeks later at an appointment with my oncologist I showed her the lump , told her I was experiencing some new felt pain in that area. Told her the story about my ordeal with Coach and that the lump actually looked a little smaller to me now than it did when I first found it. She measured it and made note to see it again in two weeks. She felt it could very well be a contusion from the impact. Sure enough it did disappear over the next few weeks, however the pain did not and it continued to get worse and spread. That concerned her now. I was on chemo (had started again in December because the cancer had become progressive once more) so the chemo was at least holding the cancer at bay and not letting it spread. She felt as though there might be a fracture of some sort. She ordered a MRI.
With what time had passed and waiting for my MRI appointment, We are now in February. I barely made it through that damn scan. With a pelvis scan I was supposed to lie flat on my back and legs straight, which is impossible for me. My right hip joint won’t function that way to allow my leg to lay flat. The tech put a rolled up blanket under my knees, I told him I needed more support but he said “We really can’t do that, your body needs to appear flat as possible on the bed, so lets try it this way”. In my mind I was yelling “ASS”. As if that wasn’t bad enough, He then placed a band around my feet to keep them together, lay this platform thing across my body,and gave me headphones for music (I could barely hear) to block out the loud sounds of the MRI machine. He then explained it would be about 20 to 25 minutes for the first phase of non-contrast images, then I would be given an injection and would go for another 20 for the contrast images. I’ve done this before so no big deal. I was uncomfortable but psyched myself up to get through it, after all it was only 20 plus minutes. I started counting songs. I figured on average a song may last 3 minutes so I should definitely be done by the 7th to 8th song. The music was actually hard to hear over the loud machine. I hollered out for him to turn it up louder, so he either did not hear me or just ignored me for the volume never changed. I tried singing the songs to keep my mind preoccupied, but with every minute the pain escaladed. I couldn’t understand why this was causing me so much more pain than normal. Tried rationalizing it in my head, telling myself it really can’t be that bad. My hands were trembling by the time the 8th song started. Why wasn’t he stopping this damn thing. I wanted to cry, but I knew crying was not going to help the pain. It would just give me a snotty nose that I could not touch or wipe while in this damn tunnel and make it hard to breath. I already felt like I had a sore throat (had to ask for water before the scan because all I wanted to do was cough) so crying would just make matters worse all the way around. “Don’t cry Angela, don’t cry!” . Then it sounded like the loud machine was shutting down……..”Oh Thank You Jesus”……. NOPE……. it started again. I felt my heart sink, literally felt it sink. 9th song, 10th song. With no control any longer my eyes filled with tears, my body was shaking…. 11th song. “Oh My Lord Please, Please Help Me”. 12th song. Ahhhhh the machine finally stopped for good. The tech walked in, pushed the button for my scanning bed to pull out of the tube and all I could think was “Damn Idiot did you forget about me”. He starts by instructing me that he would be giving me an injection and I would once again…..”Oh no I won’t! I am not going back in there”. Then I started to really cry, sobbing. I told him there was no way that was 20 minutes. Then he remarks all light-hearted like, “Oh no that was about 35”. I am pleading with him at that point “WHY?” Like why would you do that too me. He explains he decided to try some new software that’s suppose to clarify the images more. I could have killed him at that point. He never bothered to ask me if that was okay and he knew when it began I was already in pain. He really is an idiot. Before he could say another word to convince me to follow through with the next part of the scans, I had everything off of me, scrambling to get my cane. I had to get out of there. I just might punch him. He told me at least with the new software he used the doctor may be able to see what she was looking for without requiring me to come back for the contrast scans. I said a little prayer as I hobbled out of there like Speedy Gonzales.
The Imaging center called the doctor with my results that night and then I got a call to go to the emergency room. It was via voicemail for I was sleeping when the call came in at 7:00PM. When I listened to the message I opted not to go to the hospital. I just wanted to sleep after the day I had. After all, I knew nothing would be done for me that night anyway. I decided to just wait and see my oncologist the next day at my already scheduled appointment, to see what was really going on. Those MRI results, well they showed why I was in so much pain.
- An Alternative to Painful Mammograms? (everydayhealth.com)
Oh my Lord, I don’t know what the deal was but the month that followed my last doctor appt (in July) was basically one from hell. After receiving such fantastic news at that appointment, I surely was not expecting what came to be. My over all pain started to increase, then my hip pain tripled and I could not walk. I normally use a cane, but that was no longer sufficient. I resorted to my walker and wheel chair if I had to absolutely get out of bed for some reason. Most of the time however you would find me in bed. I felt so drained and just plain sick and weak. I slept off and on as days passed. I basically lived on applesauce. Those little individual containers were convenient to keep at bedside. Gatorade and diet sodas were my drink of choice. Yea I am very much aware how bad soda’s are for us cancer victims, but I do partake when my taste buds take a hike and I need some bubbly in my mouth just to keep it alive. My poison of choice was diet orange Fanta. I craved it.
By July 18th I couldn’t bear it any longer and went to the emergency room. I was sure I had either dislocated my hip or some how broke it again. The pain was that intense. However neither of those were the case. X-rays did show a small fracture in my right iliac wing (part of the pelvis), but that was also seen in my PET scan from a few weeks prior. Nothing to really worry about and definitely not the cause of this severe onset of pain. The x-rays did show that half my femoral head has disintegrated and the bolt in place to keep the femoral head and femur together is now grinding inside the joint with every move I make; metal bolt against bone. There is a ligament that is attached to the outer part of the femur and stretches across to pull the head and joint together, by the other end of that ligament being attached inside the joint wall. Well guess what, I no longer have one in place. So with both of those problems my leg and hip kinda move very loosely and slide in and out of socket. With half the femoral head gone and the ligament gone there is nothing anatomically correct holding my femur and hip together. As well as it causing deep tissue damage. The emergency room doctor did say that was most likely causing the increased pain. Of course there was nothing they could do. I was told to see an orthopedic surgeon and should ask my oncologist for a stronger pain management regimen. As the kids say these days, FML.
I went home and climbed back in bed and continued my days of hell. After about a month and 22 pounds down(lost), some of the pain started to subside. Just in time for my insurance to stop paying for my Celebrex prescriptions. Woo fuckin hoo. Just another wall falling on top of me. One less medicine to take, however it helped greatly with some of the inflammation pain. So it was a few steps backward for a while, but just one more hurdle to get over.
After a two month hiatus from my oncologist and two and half months off chemo, it was time for a check up last Friday. I had my blood work done a week prior so my tumor marker numbers (ch27.29)would be in as well. The news was not so promising as we all had hoped. My tumor marker numbers had jumped. Had them tested twice over the past 2 months and they had went down, but this time they were up to 57. Dr. Browne said she would not be overly concerned with that jump if it wasn’t for the pain I was experiencing, especially the new areas causing pain. She wanted to start me back on chemotherapy as soon as possible.
However I had finally found a new dentist to see. I no longer needed an oral surgeon because I pulled the two teeth myself. The two teeth I needed to have surgically removed kept getting looser and looser but the pain from them was another issue for me. One of them being directly involved with a nerve in my jaw. Then infection started to set in, and one night as I was once again awaken by the teeth pain, I just had to do something. I couldn’t take it anymore, so I just pulled the one tooth that hurt the most at the moment. A few nights later it was time to deal with the one effected by the nerve. That one was much harder and more difficult to remove but I did it. Who needs an oral surgeon. LOL. It was a short lived relief as the infection continued to get worse moving down into my neck, into my glands and effecting my right ear too. The swelling was very evident over half my face. Getting off track I think as I’m writing. Dr. Browne gave me a prescription for a very strong antibiotic. Knowing we had to deal with that first and if I had that taken care of I could receive the dental work I needed much faster when seeing the new dentist. I told the Doc I was not ready to give up on finding an orthopedic surgeon either. I have been working with a case manager within my insurance company who has made it her personal goal to find me the care I needed no matter where it might be in Florida, somewhere.
As I mentioned in the past blog or one before that, I can’t have any surgery while getting Zometa or Avastin, along with chemo. After discussing my options with the Doc I decided to put it all off for another 6 weeks, in hopes of being able to have the dental work and hip surgery. I will let her know if I am successful. I am scheduled for a PET scan the end of October and then will see her again the first week of November for the results. For me, that will be the true marker of what direction I should take then. Who knows the results may be miraculous again. I do have God on my side.
Oh guess what. After calling a list of orthopedic surgeons located in Tampa, that my insurance company gave me as supposed doctors in my network, I finally found one that actually agrees they do accept Universal Healthcare. After about 30 calls today, I have an appt next week on October 5th. I am afraid to get my hopes up!
- Psychology of Pain: Pain Medicine News (psychologyofpain.blogspot.com)
- Physical Exam: Hip Hip (distractible.org)