It’s been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.
One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying my body’s ability to produce mechanisms for absorbing nutrients. He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population. Needless to say, I think we are on to something! Here’s to keeping my fingers crossed that this might lead me to the relief I’ve been waiting for!
We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim’s condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from. While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon. In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.
“Til next time!
Blood tests came back today. I did not test positive for the antigen necessary for me to participate in the San Antonio clinical trial breast cancer vaccine. I really had my hopes up – why else would I have been led down this path? That remains to be seen now. If anything I guess it goes to show that as patients it is really up to us to know what is out there in the way of cutting edge research and available trials. The doctors certainly aren’t focused on doing that across the board. I just really am at a very down place right now in all of this.
I am scheduled for a breast mri next Friday and then my oncologist would like to investigate further into why I am not getting relief from the pain in my side and wants to determine what that is. He emphasised again today that he does not want to give up on that. Personally, I am tested OUT, and scanned to the point of “glowing”. I’m not sure what more there could be but he has some ideas. I told him I want to get past next week’s mri first.
After getting today’s news, I got in my car and turned on the radio and here is the song that was on. Thanks God.
I’ve been trying to put into words where my mind is now, 2 1/2 years after a breast cancer diagnosis. You would think that by now I would have “moved on” or returned to life as it once was, “normal”. So why hasn’t that happened? I am often asked in my counseling work, how long it takes for life to feel normal again and I must say, I personally have not found that “place”. Sometimes you hear it referred to as “the NEW normal”, but that is kind of misleading because it doesn’t feel like it should feel and “normal” feels out of reach, somehow. Last week I laid in bed, ready to fall asleep but I wasn’t asleep yet. There in the dark of night, my mind wandered. I have no idea what brought on the thought, but there I was, in the operating room the morning of my breast surgery and it felt every bit as real as it did on that day. I had just been through a very painful, torturous node biopsy injection of dye, where I laid fully awake, with no anesthetic (that was the protocol at the time, believe it or not – not so anymore), and now here I was in the O.R. prep room having a nurse attempt for the third time to start an IV on me, yet blowing my veins out at every try. I was shaking in pain and fear. I could not believe that within just minutes I was going to be rolled into surgery where I was forever to be maimed. How could they not even get this simple step right? I remember the look that my husband gave them, “Enough you people. Can’t you see she has been put through hell already?” and within seconds they gave me an injection of a sedative. That was when tears began rolling down my cheeks to my pillow. I knew in that moment that I am experiencing post traumatic stress. I re-live the events of two years ago and they are clear as day in my memories. Why can’t I just say to myself that the cancer is gone and I can go back to my old life? Because no doctor will tell me that I am cancer free and no doctor will say that I have been cured. I can only liken it to what soldier must go through when he returns from war. His family is so happy he emerged alive and safe, but in his “world”, the world of war, terror reigns and fear is a familiar voice in the back of his mind whispering “watch out – I’m gonna get you!” It’s as if I’ve returned from my war, the war on cancer, with the enemy in my back pocket – just waiting for his chance to come back and attack. When you’ve been attacked once, you never let it go. You never forget. Ever on guard, always the strategist, aware on a daily basis of every possible change in your body, every ache, pain, – it changes you. Survivors told me this when I was first told that I had breast cancer, but I had no idea what that meant – it will change you. You’ll hear soldiers return from the Middle East and say the same thing. It changes you. How can it not? And those who have never been through an attack, can’t seem to understand, and with that the survivor feels a distance from even those whom she loves. No wonder military soldiers ask to be returned to their brothers in arms. Coming home is difficult. Re-joining society after an experience like this feels empty and foreign. Only other survivors seem to feel your pain and loss. When I was growing up, my father always answered our front door with his gun in his back pocket. It wasn’t as if we lived in a bad neighborhood. We didn’t. We were the upper middle class Americana, where kids played hide and seek until late at night in their yards, and we had annual Christmas potluck parties with all the neighbors. But our home had been broken into once by a burgler when we were away from home, and ever since that experience my dad has never let his guard down. Even now. Even forty years later he is aware that the enemy’s attack is just one broken window away from becoming … a bad reality. Isn’t that what terror is after all? The fear of a very bad reality.
Today I saw a gynocologist at Walter Reed Army Medical Center. She had been in practice over 30 years. She was sort of that cold, hardened, brash type, well, you can picture her. (I do not mean any disrespect at all to our fine women serving in the US military.) But, with 30 years under her belt, I figured I was in good hands.
She, without even doing an exam wanted to tell me I should have my ovaries shut down (this due more in part, I suspect to my breast cancer history being positive for hormone stimulation), and I explained that my oncologist and I have discussed that and that was not the reason for my visit today.
I explained the pain I have been having since August and that it is on my side (rib area) and near my navel, and that my oncologist was able to find it precisely when palpating near the navel, and that
it is intermittent, but persistent, daily, and spontaeneous. She did an exam and told me she believed that I may have adhesions of the uterus but that the chances of them causing problems now 16 years after my last c-section was pretty slim, and that if that is the cause of this pain they would have to take the whole uterus and ovary anyway. Wait, but didn’t she just say she didn’t think that was the cause of this pain? I think she just wants my ovary! Maybe she keeps them in a jar on her shelf or something. Strange! Oh yeah, and then she proceeded to tell me to stop all coffee and diet cokes for a month and that may be the cause of this. Huh? Then she said that the pain on my side might be “gas”. I said, “For 4 and a half MONTHS?” Really?
Never once did she palpate the area of my pain. Only the area of the uterus and ovary, which doesn’t hurt at all. My oncologist had suggested an abdominal AND pelvic mri but this gynocologist only put in for the pelvic stating that gyn is her specialty. So I now have a message in to my oncologist to ask him if he might spare me a trip and put in for the abdominal mri along with the pelvic mri which is scheudled for the 12th of January.
Round and round and round we go – where this stops, nobody knows!
Today was my colonoscopy. This was after 2 straight days of not eating. Needless to stay I was a wee bit grumpy to start with. Up all night as the prep took affect, then fasting with no coffee this morning, but I made it and had looked so forward to having the answers I have desperately been seeking for 4 months. Why this pain in my abdomen? The nurse who started my IV got it going on the first try which was a first! Whew! Hard part down! I waited about 30 – 45 minutes and then they took me back to the room where they sedated me and performed the procedure. This is the same place I had my endoscopies in August and October recently, and according to them the same exact dosing of anesthetic drugs to sedate me. Well, that was a disaster today. I did not fall asleep, in fact I was relaxed and awake and screaming in pain for most all of the 27 minute procedure. At every turn in my colon I felt terrible pain. The doctor kept telling me it would almost be over, and for short periods the pain would pass but then he would have to make another turn. I just couldn’t believe it. I had never heard of this happening to anyone before. After I went back to recovery, the doctor came to speak with me and told me he didn’t find anything to explain the pain I have had for 4 months, nothing to biopsy, nor explanation for the pain during today’s events. He said that if I ever have to have this procedure done again he would recommend general anesthesia since he had given me the highest possible dose today and for some reason it did not do the trick. From what I understand, colonoscopies are not normally painful and so patients generally just dose off to sleep during them. So why so much pain in there? I hope to follow up with all of my questions tomorrow with my g.i. doctor and or oncologist. My g.i. doc was not the one to do today’s test, but maybe he has some ideas. I feel like I have reached a dead end in this pursuit and and I am very frustrated and exhausted from all of my searching and I am no closer to an answer. Only that when I searched on line I am NOT the only patient that this has ever happened to. It’s more common than I realized. I’m going to go eat some ice cream!