Tag Archive | health

Another disappointment

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.
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Dead End

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!

Pressing on…

heartplant_tcToday is June 1st, 8 months since my breast cancer diagnosis.  Sometimes it seems a lifetime ago and sometimes it seems like just yesterday.  Some days I feel I have survived the worst of it and then some days I feel like I am still fighting.  I have met many breast cancer patients and have found that some call themselves ‘survivors’  from their date of diagnosis and some from the date of their surgery.  I don’t know when I will call myself a true survivor. All I know is that I don’t feel like one just yet.

Maybe that’s because I am still going through IV infusion treatment, spending the day in the chemo ward every 3 weeks, and maybe that’s because I still have very little hair at all, and my fingernails and toenails are rotting, bleeding, and falling off. ( Gross, I know, but that’s the raw truth.)  I escaped to a movie theater a few days ago and got engrossed in the show, forgetting  for three hours that I had breast cancer, only to go to the restroom after wards and find blood on my shirt from my bleeding fingernail.  I wrap band aids around them and try to keep them on.  “This part is taking too long”, I think to myself,  this part of regaining my body after chemo therapy.  And even the therapy I am getting now, though not as toxic as the last four and a half months, still causes me headaches and fatigue and I am scheduled for nuclear heart scans every 120 days to check for cardiomyopathy, a side effect to the drug Herceptin, which I get 324every 21 days.

(Tim and me, out to dinner last weekend, with his parents who came to visit from St.Louis)

On a lighter note, though, I was traveling back from California a couple of weeks ago and in the airport magazine/book store the clerk said to me, “I love your hair color! It is really nice with your brown eyes.”  I smiled and then leaned over to her and said, “I have a dirty little secret to tell you”…and then I told her about my wig and breast cancer.

I thought to myself, I could say “thank you” and go about my business, or I could put a face to breast cancer and let people know that it is not your great aunt’s disease anymore.  It is affecting more women than ever before, in staggering numbers and to people whom you never would have suspected.  Many celebrities have hidden it from the public until now.  The risk factors are becoming more widely advertised and discovered by scientists.

I don’t know what my life after breast cancer treatment will look like, but right now it includes a desire  to let people know that finding a cure, though a great hope for us all, is only one piece in a very larger puzzle of finding the cause.  The more I read, the more I see how our society and foods, and lifestyles play a big role. Now if I could only get myself to make some of the changes that will reduce my risk of recurrence such as daily exercise and eating a large diet of fresh fruits and vegetables! I’d better get off this computer now, and put on my walkin’ shoes!!

The Wait

Six more days until the biopsy.  This must be the worst part.  The not knowing…the worrying.  I feel  shooting sensations in my breast.  I have had them for the past several months but sort of ignored it and figured they would tell me at my annual if I needed to worry about that.  It’s a constant reminder of what’s to come, although, even that I don’t really know what to expect WILL come.  I think about all sort sof things.  I think about what I will say if they tell me its benign.  I think of what I’ll do if they tell me it’s not.  I think of what I’ll tell my children and I think of what my breast will look like if they have to operate on it in any way.  I think to myself that it is all very strange that I decided in April that I would not return to work this fall and, everyone seemed so puzzled as to why I would do that!  After all, I loved my job!  I wanted to stay home full time and build my business and clean my house, I told myself.  And really, it was the truth!  But now I wonder if God has something else in the works for me and He was opening my schedule to make room for it. I could let my mind get carried away with this thing and I am trying really hard not to.  My gynecologist called last week so I could talk to her about my test results and she seemed very guarded in her answers and said that this shouild feinately be explored.  She also said (twice) “You’ll be in my prayers”.  Why would she say that?  I found it very odd.  Did she read something ominous in the report? I wish  knew for sure.  Well on a lighter note, isn’t this butterfly pretty?  I took this photo this Labor Day weekend when my husband and I went away for the night and stopped by an orchard on our way home from Pennsylvania.  It could be published in National Geographic, don’t ya think? This is a hobby I have long wanted to explore, photography, and with the purchase of a new fancy camera I am on my way!

Until next week…

BETTER THAN BEING CARDED! the thrill of youth

At age 44, I feel somedays like my life is just about half over. Another 45 years or so and I could expect to be gone. I don’t dwell on it, but it is a fact. I won’t be hanging around forever! Yesterday I took my son to a doctor’s appointment. He is 18 (yes he could have gone by himself), but this was a dermatologist and the office was quite a distance from where we live and he didn’t ask me to come but he did give me that look, like, ‘Okay Mom, if you want to, but please do, because I don’t have a clue where I’m going.’ A pesky case of excema, nothing too serious. Well, the doctor sitting across the desk from us turned to me and said, “And, you’re the sister?” HA! I nearly broke out into laughter! I wanted to kiss her! She was absolutely serious! She was probably about my age. She said she had a 16 year old son. I told her that, no, I didn’t “start having kids early”, and that I would be 45 this year. I think she was cringing inside. She had clearly let her weight get out of control, and I’m guessing she didn’t believe in make up, being a dermatologist and all. I’m just guessing here. At any rate, I swelled with pride wishing my husband could have been there. He got carded at the basketball stadium a few weeks ago when I was with him. The following week he took our sons to a game and DIDN’T get carded! When he came home he told me that he thinks they only card him when we’re together because they think he’s buying for his young girlfriend! Double Ha! This was better than that. This was a doctor who should know just by looking at a person what their real age is. She is an expert and so I am taking her estimations of me 100% and I’m not looking back! I am the sister.