What a year! There is so much I haven't told you. So much I havent shared. I haven't told you about how I think of my decision everyday to stop chemo and how it eats away at me, I havent told you much about my relationship with my parents and Tim, I haven't told you about my most isolated days during treatment when would just put the song home by michale buble on repeat and cry while in the hospital, or how we used to find humor in everything even the sad stories that would make anyone cry.
During treatment I was happy and positive, sometimes it would feel wrong to be that happy. I still find the transition from being a cancer patient, as a hushed word to being a cancer survivor a word of strength hard. You always hear the stories of people climbing mountains after cancer, but I feel that if you can climb into bed at night with the truth and fear you have faced to be much more amazing. I am sorry I am just not that person that could work full time and do marathons during treatment, and so many people I would talk to said the same thing. I have been more careful who I talk to about my experience, I have realized that some people simply don't respond well or even in a way that makes me feel better, and that it is ok.
Sometimes I don't feel like cancer is so misunderstood. Just because cancer left my body dosent mean it left me. When I was Finished I was dropped off in a sea on new medical problems, my feet where destroyed and left me with weeks of walking around with casts, I was throwing up twice a day and still not able to swallow my esophagus ruined with scar tissue, my skin burned and a bad case of pancreatitis and lost 10 more pounds all left me feel worse than when I started. It lead to a serious of new medical tests and diagnosis and treatment options and surgery that left me more confused than the next.
This has giving me more of a reason to get any small medical issue I have checked out, most people in their 20's have a delayed onset of symptoms and little to no medical coverage and leaves them with more advance diagnosis and a less chance of survival. When I still could not swallow for 7 months after raidation and was loosing weight I was automatically labeled as anorexic after months of complaining I had my barium swallow and the massive stricture in my esophagus was found. Your body never lies, and never let anyone tell you different. I will never forget what I read once " don't fight the cancer, fight those who get In the way of you receiving the best possible treatment."
All my love
Mary
Thursday, April 28, 2011
Friday, April 8, 2011
Medical wasteland
Surprise, my wound got infected! I had a special trip back to the Derm surgeons today to have my wound drained, clutured, cleaned and then stitched again. I got some yummy liquid grape flavored antibiotics since I still can't swallow pills I have to take 20ml twice a day, it's quite a lot of liquid grape medicine. I'm just happy that it is at least flavored unlike my daily meds that need to be crushed and taste like chalk. While I was talking I asked if the pathology report came back, totally expecting the worst but they seemed cautiously optimistic that they got all of it! I will get a copy of the report tomorrow when I have to go in again. I am very happy. They seemed to be a little concerned, so my next scans will check lymph node activity but for today I am slightly reassured that it hasn't metastasized rapidly or something crazy.
I love it when Doctors talk percentages and sastictics to me, I find it hysterical. The melanoma is at a 92% cure rate and that makes me happy but I asked what happens to the other 8% because I have kind of noticed this trend with me and rare side effects. Then we talked about the antibiotic and its rare one in a million chance of causing a severe rash that could burn your skin so much so that it could start falling off and I started laughing hysterically so much so that I was tearing. They seemed confused and just kept telling how rare that would be but they have seen it before, Im sorry but your telling someone who got an already rare cancer that most people get before the age of 5 that I got at 24 that this side effect is rare. Rare seems to be my normal. I had so many antibiotics in the past two years for infections all the side effects I could write a book! The dr asked just out of curiosity what antibiotics I had taken in the past few years, I responded with the following, ammoxaclin, keflex, clindimycin, cefazolin, ceftaz, flagyl and vancomycin he stopped be before I could finish my list I think he lost his curiosity. I found it so ammusing I actually had to pee I was laughing so hard. I have a new antibiotic to add to my list. I will return tomorrow so they can make sure it still doesn't look so angry and hopefully have most of the sutures removed!
It felt so great to be angry last blog, after I posted I felt so much better and have moved on. Thank you for the supportive emails it feels great that I can express myself, no matter how awful or sarcastic my mood. We are moving, it's a mixed bag of emotions. Our apartment is like a pharmacy. So many medical supplies that I needed to get rid of. I spent days on the phone, I called Dr's without borders,red cross, local organizations, community health centers, so many medical supply places the state. No one would take unused still packaged medical supplies. I'm talking thousands of dollars of unused supplies clean needls, central line kits, heparin, saline, tagaderms, antiseptic wipes, tubing, syringes, tape, gauze, gloves, tpn supplies, pill crushers, gauze. And so much of it the only place that would take it was the humane society. Sad. This is not even including the cases upon cases on infant formula that I did get to donate to a local food bank. The unused medicine took another full day to organize and then dispose of properly. It made Tim and I incredibly sad we had a sea of important basic and sometimes life saving supplies still unopened and no one could use it to help suffering people. I guess we could have helped a few animals, although sadly most of it is waste.
All my love
Mary
I love it when Doctors talk percentages and sastictics to me, I find it hysterical. The melanoma is at a 92% cure rate and that makes me happy but I asked what happens to the other 8% because I have kind of noticed this trend with me and rare side effects. Then we talked about the antibiotic and its rare one in a million chance of causing a severe rash that could burn your skin so much so that it could start falling off and I started laughing hysterically so much so that I was tearing. They seemed confused and just kept telling how rare that would be but they have seen it before, Im sorry but your telling someone who got an already rare cancer that most people get before the age of 5 that I got at 24 that this side effect is rare. Rare seems to be my normal. I had so many antibiotics in the past two years for infections all the side effects I could write a book! The dr asked just out of curiosity what antibiotics I had taken in the past few years, I responded with the following, ammoxaclin, keflex, clindimycin, cefazolin, ceftaz, flagyl and vancomycin he stopped be before I could finish my list I think he lost his curiosity. I found it so ammusing I actually had to pee I was laughing so hard. I have a new antibiotic to add to my list. I will return tomorrow so they can make sure it still doesn't look so angry and hopefully have most of the sutures removed!
It felt so great to be angry last blog, after I posted I felt so much better and have moved on. Thank you for the supportive emails it feels great that I can express myself, no matter how awful or sarcastic my mood. We are moving, it's a mixed bag of emotions. Our apartment is like a pharmacy. So many medical supplies that I needed to get rid of. I spent days on the phone, I called Dr's without borders,red cross, local organizations, community health centers, so many medical supply places the state. No one would take unused still packaged medical supplies. I'm talking thousands of dollars of unused supplies clean needls, central line kits, heparin, saline, tagaderms, antiseptic wipes, tubing, syringes, tape, gauze, gloves, tpn supplies, pill crushers, gauze. And so much of it the only place that would take it was the humane society. Sad. This is not even including the cases upon cases on infant formula that I did get to donate to a local food bank. The unused medicine took another full day to organize and then dispose of properly. It made Tim and I incredibly sad we had a sea of important basic and sometimes life saving supplies still unopened and no one could use it to help suffering people. I guess we could have helped a few animals, although sadly most of it is waste.
All my love
Mary
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