I Never Really Lost It To Begin With

       Those doors were the only thing separating me from the busily world that existed beyond them and the tears that were clinging to my eyelids.  I stood stoically at the counter affirming my appointment for next week as if it was like any other normal appointment I have become so accustomed to making with my cancer doctor.  My attention returned to the counter as Jodi tapped her fingers in rhythm as she waited on the phone for a set time.    She was more accommodating than usual as she reiterated that I needed the next available opening per Dr. Browne’s orders, but then requested a later time (she gave me a partial smile), knowing I liked all my appointments in the afternoon.   Even when setting the time for this new chemotherapy I am to start next Friday, she told me she would make some calls to reschedule other patients so I could come in the afternoon.  Like Wow, that’s pretty amazing of her (completely out of character), but I couldn’t really be happy.  All I could think was . . . “she knows . . . that’s why”.

       Leaving the doctors office, I pushed the door open, met with a late afternoon, 85 degree winter and I couldn’t even appreciate the breeze.  The door closed behind me just as the floodgates opened, I couldn’t stop the tears, the strong me had stayed inside. That space from the door to my vehicle seemed unending, like I was going the wrong way on an escalator.   I have not felt that alone in a very, very long time.  My hands were trembling as I looked down at my phone, thinking of who could I call, where could I go.  My (now 17 year old) daughter Skyelar was waiting at home for her father to come get her for the weekend.  I called hoping she had already left for I didn’t want to arrive home in this condition. She didn’t answer. I called my son in hopes that he was off work by then and I could stop by his house, cause if I ever really needed to feel one of his amazing hugs, it was right then.  He didn’t answer.  I had no one I could turn to at that very moment.  Oh how that huge void expanded drastically in those few seconds to add to my distress.  I wasn’t about to call my older daughter, even though she lives just a few miles from where I was parked, she had special plans this birthday weekend with a special guest and I wasn’t about to put a damper on that.  The news will still be the same on Monday.

       I wiped my eyes carefully to not smudge what was left of my mascara. I took a deep cleansing breath and I headed to the grocery store.  I needed rations to get me through the weekend so that once I got home, I need not have to leave again.  Cocoon myself in with all my favorite things and deal with reality when I absolutely had to. Well it didn’t quite go that smoothly, as both my children called me back while I was in the grocery store.  Love me like they do, they were just wondering why I called them. At that point I tried keeping it together and making it sound like it wasn’t anything important; mainly because I was standing in front of the peanut butter in an aisle full of people (its amazing how many people shop for that stuff on an early Friday evening).  Both Justin and Skyelar could hear something in my voice. They knew something wasn’t quite right. So there in the buzz of a grocery store, In two separate phone calls, I revealed to two of my children (and the strangers standing near by) that my doctor told me I am showing all the signs that my cancer has metastasized to my brain.  What I thought was side effects, she believes to be brain cancer.  I heard their hearts break in the long silence that followed.  Once again I was crying, walking aimlessly through a damn store (looking for a new brain and two hearts).

       I guess I desperately needed to believe that this vast list of issues I have been dealing with had to be related to the new drug regimen (Afinitor and Aromasin) I started in January even though some of these started before I began the medications. But when it comes down to it, if there are side effects this girl is going to feel them. If there are rare effects, I am definitely going to experience them. That has just been my luck with all the drugs I have been on over the years.  When I learned that my tumor marker numbers doubled in three weeks time and are now higher then they were when I was first diagnosed 7 years ago this month, I still didn’t correlate my so called side effects as having anything to do with that for I had to believe otherwise.  I knew it wasn’t going to be good news, but thought it was going to be a time for search and discovery to find out why the numbers escalated.  Little did I know Dr. Browne already had an idea and was only confirmed when I told her the following:  My pain level has tripled.  I experience dizziness daily and I actually faint often. Memory problems.  I am nauseated 24/7.  I vomit frequently.  Loss of appetite.  I lost almost 15lbs in just a matter of weeks.  Excruciating headaches all the time.  My vision has gotten worse and changes frequently. (I can be reading and then all of a sudden the words become unreadable either by excess blurriness or the words appear very small – thought I needed new glasses). The lethargy is the worst part. I just can’t function so I am in bed most the time.  She said to me “ALL these issues together are exactly what I would expect to hear from a brain cancer patient. We need to do an MRI of your brain immediately”.  I am fortunate I was on the exam table at the time and had no where to fall.  All those and a few more actual side effects that I now know Are directly related to the medications have made my life a living hell to say the least.  I have been wondering how could anyone stay on this treatment for long periods.  Besides those mentioned above, I also have mouth/tongue ulcers, extreme change in taste, the entire inside of my mouth and gums feel like they are burnt from scolding coffee,  rash, itching all over (more intense on head), head sores (folliculitis of the scalp) and hic ups. Oh did I say memory problems.

       The MRI of my brain is scheduled for Wednesday afternoon (per Jodi’s nice request). The doc put a rush on the results which she should have on Friday when I see her again.  I am also foregoing these new drugs  since they are obviously not working.  And as much as I despise it, I am returning to the traditional intravenous (IV) form of chemotherapy on Friday with an agent I have not used before called Navelbine. I don’t know what lies ahead of me.  This fear swimming around me is not welcome, yet all too familiar; as the terrifying nights of the unknown, from 7 years ago, splash against the movie screen inside this skull as if it’s all starting over again.  I just keep telling myself . . .  Don’t Fight the Fright, Fight the Fight!!

Dorothy:    How can you talk if you haven’t got a brain? Scarecrow:     I don’t know….but some people without brains do an awful lot of talking, don’t they?

 

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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)

 

Close to Hell

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.

 

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