After a few almost surreal almost perfect healthy months a huge shocker came our way i guess you could say its a "crappy" situation...guess it yet... Oh yeah its back! C-dff, the awful infection that crippled my body during treatment and the single reason i stopped treatment early. A couple weeks ago i started have trouble and went to visit my GI doctor, and we started at the beginning he mentioned he wanted to test me for c-diff and i didn't think much of it. Until a few days later when the cramping became awful and i became seriously dehydrated and my abdomen very distended. That day he called me to tell the test result was positive and i was shocked! I tried not to let it slow me down the next day Tim and i did the Covey run for Seattle Children's (that we ended up walking because i really wasn't feeling all that great) and i started my antibiotics that day. Admitting me became a very real possibility but i have been trying to give it time. I am still not quite feeling better and am concerned that after a year and a half the infection has come back but am hoping that my very expensive medicine takes care of it. I have been working full time at a local chiropractic office as a assistant and although it is tiring at times especially when sick but i really enjoy it. I have started running again, life seems to be resuming almost like normal i can eat just about everything its just keeping it in me that seems to be the problem. Tim is doing great he is very busy working and is either playing soccer or watching it in his spare time. We hopefully will get to go to Oak Harbor to visit family and friends for the long weekend, with our busy schedules it can be hard to find time so the extra day will hopefully give us some time to relax with our loved ones and enjoy our precious time together! All my love
Mary
Thursday, September 1, 2011
Monday, July 18, 2011
Update
Hi!
It has been forever since i have posted but for anyone who is still following this blog i thought i should update it! Last month i had my routine CT and MRI scan. After a couple weeks of stress and wondering i had my appointment and my scans a clean, NO cancer. It has been an awful transition from Seattle Children's to Seattle Cancer Care alliance or SCCA as i will refer to it as. They scheduled my scans over a month late only after i had called many times to get them scheduled and have been awful with my follow up care. We have called the nurse practitioner in the sarcoma clinic for two weeks everyday and never received a call back, at my last appointment we mentioned all of these concerns to my Dr. who assured me it wouldn't happen again, at this point i think it is best to transfer my care to another facility that can better manage my follow up care. My scans are the most important part of my follow up care and critical in detecting cancer and i want to not have to worry every three months if they are doing their job. Children's was amazing and i never had to worry, and i don't feel i should have to sacrifice my health because they are not organized enough to at least schedule my appointments in a timely manner and call me back within a reasonable time. It is like pulling teeth..speaking of i have oral surgery on Wed this week to have all four of my wisdom teeth removed. I am so happy...i am sure it won't be bad, all my friends say it is awful but i don't think any of them quite have the experience that i have with pain.
I have had some thyroid issues, it is normal for people to have thyroid issues after radiation it just scares me a little more because your thyroid is right in front of your larynx and that is where i had cancer so i guess i just don't like anything in that area to to be going wrong. Getting my medication right is tricky but i am feeling better not as tired and my hair isn't falling out like it was. Many other changes almost too many to mention, i got a job as a chiropractic assistant in Seattle and i enjoy it! My eating has greatly improved and i am finally above 95 pounds and think i am going to have to start working out soon, i am hoping my stricture stays open for at least a few more months until i have to have another dilation. I very much enjoyed my birthday cake last week, almost a little too much its crazy think i am 26 but feel so blessed that i am hear to celebrate yet another year! When i think of how incredibly lucky i am to be able to live another year it makes me so grateful to have experienced everything even all the pain, frustration, tears and profound sadness just has made life that much more beautiful. Here is to another hopeful cancer free year filled with love happiness and many more memories!! I will post a few recent pictures. All my love
Mary
Beach day
Deborah and i
Melanie backstage at Giselle
Playing dress up with Fiona
Birthday weekend
Laides night with Ally and Cherise
It has been forever since i have posted but for anyone who is still following this blog i thought i should update it! Last month i had my routine CT and MRI scan. After a couple weeks of stress and wondering i had my appointment and my scans a clean, NO cancer. It has been an awful transition from Seattle Children's to Seattle Cancer Care alliance or SCCA as i will refer to it as. They scheduled my scans over a month late only after i had called many times to get them scheduled and have been awful with my follow up care. We have called the nurse practitioner in the sarcoma clinic for two weeks everyday and never received a call back, at my last appointment we mentioned all of these concerns to my Dr. who assured me it wouldn't happen again, at this point i think it is best to transfer my care to another facility that can better manage my follow up care. My scans are the most important part of my follow up care and critical in detecting cancer and i want to not have to worry every three months if they are doing their job. Children's was amazing and i never had to worry, and i don't feel i should have to sacrifice my health because they are not organized enough to at least schedule my appointments in a timely manner and call me back within a reasonable time. It is like pulling teeth..speaking of i have oral surgery on Wed this week to have all four of my wisdom teeth removed. I am so happy...i am sure it won't be bad, all my friends say it is awful but i don't think any of them quite have the experience that i have with pain.
I have had some thyroid issues, it is normal for people to have thyroid issues after radiation it just scares me a little more because your thyroid is right in front of your larynx and that is where i had cancer so i guess i just don't like anything in that area to to be going wrong. Getting my medication right is tricky but i am feeling better not as tired and my hair isn't falling out like it was. Many other changes almost too many to mention, i got a job as a chiropractic assistant in Seattle and i enjoy it! My eating has greatly improved and i am finally above 95 pounds and think i am going to have to start working out soon, i am hoping my stricture stays open for at least a few more months until i have to have another dilation. I very much enjoyed my birthday cake last week, almost a little too much its crazy think i am 26 but feel so blessed that i am hear to celebrate yet another year! When i think of how incredibly lucky i am to be able to live another year it makes me so grateful to have experienced everything even all the pain, frustration, tears and profound sadness just has made life that much more beautiful. Here is to another hopeful cancer free year filled with love happiness and many more memories!! I will post a few recent pictures. All my love
Mary
Beach day
Thursday, April 28, 2011
365 days, 525,600 minutes cancer free!
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
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
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
Monday, March 28, 2011
Spilled milk...
Today was my Derm surgery for the melanoma on my back. I am really surprised at how much skin they removed. When they explained it to me for some reason I thought they would remove a small square or circle.....20 stitches later I am still surprised and pissed. Just as warning, you know how I am mostly positive and optimistic, this will not be one of those blogs today so if you care to stop reading this would be a good time. Today is going to be my day just one day to be angry, sad, irritated and negative. Mom always said no use in crying over spilled milk...well no one tells you what to do when you slip on that milk and cut your foot, that cut causes an infection the infection calls for antibiotics that causes a worse infection that reqiures hospitalization leads to amputation that leads to blood clots..you get the idea. Time heals all wounds blah blah blah. Like I said just one day.
So I don't know if anyone has realized that I mostly live in denial, ignorance is bliss right? Well when a dr mentions cancer I don't even think twice or blink, mostly because it comes up every other sentence and because It's like saying my heart pumps blood or I have green eyes. I almost wish they would stop looking because the more they look the more the find and then they want me to be surprised or upset and cry and all I do I sit. Frankly how can it be surprising you did a biopsy of course it could cancer. It's like winning the lottery rare but someone eventually wins, although I don't think I have ever heard of someone winning the lottery over and over again. Well today I blinked today I thought twice I let it sink in, and wow it sucks! Its not even the melanoma its everything. All I want to do is move my arm or any part of my back NO, eat a steak NO, sleep NO, not have pain NO, work NO, take a bath NO,stop complaining NO.
I saw a guy the other day who freaked out because his shopping bag broke and his frozen peas hit his toes....really???? That's your big problem your frozen peas? Really? He started yelling at the cashier about the quality of the shopping bags and the pain in his foot...really take the frozen peas out of the damn bag and ice it then! To be fair he could have had an awful day and it had nothing to do with the peas. We all have a breaking point, so i will share mine. I was playing wii the other day with Tim and we do this body fitness check it measures your balance, weight etc the It gives you a wii fit age, well my goal was to gain 5 pounds this was 5 months ago yeah I lost 8. The scale dipped to underweight and my BMI was below normal and my wii fit age was 44 years old..the animated person exasperated a sigh and then it read failed. Really I need one more reminder that I am failing I get it I am the BIGEST loser. I just started crying hysterically and Tim was really confused, I think he thinks I have a hormonal imbalance. So that was my freak out, and today was such a rude awaking. I am again waiting on the results from today's biopsy to figure out the next step, and hoping it's good. I will have to see the dermatologist every 3 months for the next year and then every 6 months for a year and similar to my sarcoma people at childrens, I should get a discount like at Costco because I'm buying medical procedures in bulk. Tim took pictures today, they kept telling him it was ok if he didn't want to see it I swear he would have scrubbed in if he could have he thought It was fascinating, me not so much.
All my anger
Mary
I saw a guy the other day who freaked out because his shopping bag broke and his frozen peas hit his toes....really???? That's your big problem your frozen peas? Really? He started yelling at the cashier about the quality of the shopping bags and the pain in his foot...really take the frozen peas out of the damn bag and ice it then! To be fair he could have had an awful day and it had nothing to do with the peas. We all have a breaking point, so i will share mine. I was playing wii the other day with Tim and we do this body fitness check it measures your balance, weight etc the It gives you a wii fit age, well my goal was to gain 5 pounds this was 5 months ago yeah I lost 8. The scale dipped to underweight and my BMI was below normal and my wii fit age was 44 years old..the animated person exasperated a sigh and then it read failed. Really I need one more reminder that I am failing I get it I am the BIGEST loser. I just started crying hysterically and Tim was really confused, I think he thinks I have a hormonal imbalance. So that was my freak out, and today was such a rude awaking. I am again waiting on the results from today's biopsy to figure out the next step, and hoping it's good. I will have to see the dermatologist every 3 months for the next year and then every 6 months for a year and similar to my sarcoma people at childrens, I should get a discount like at Costco because I'm buying medical procedures in bulk. Tim took pictures today, they kept telling him it was ok if he didn't want to see it I swear he would have scrubbed in if he could have he thought It was fascinating, me not so much.
All my anger
Mary
Friday, March 11, 2011
Melanoma
By biopsy results came back today from the mole that I had removed on Wednesday and it's melanoma. I am not all that worried about it, it is rare for a 25 year old to have malignant melanoma so they will do a few tests to make sure that it has not spread to my lymph nodes or liver. Most likely it's just that one mole that is cancer. Early next week I will meet with a surgeon who will remove more skin from my back and remove a few more moles and hopefully we will know more next week. Most likey it's from radation although it is extremely rare to get melanoma this soon after radation I am not all that surprised because getting a stricture from radation was also rare and yet I have that also. I really wish I had good news for once, but it could always be worse and I am glad that so far it seems to be caught early.
All my love
Mary
All my love
Mary
Thursday, March 10, 2011
Insanity
Today was a long day. I had three appointments, the first appointment was to have a mole removed and will be biopsied I have a few more that will also be removed,they are most likey from radiation as they are in the same area and have only gotten significantly worse since radiation ended. The results will be back in a week or so. When they finished they gave me a few stiches that will be removed in about two weeks. I am really hoping it's not melanoma, even if it is they would just need to remove more skin.
The second appointment was a meeting with the Dr who is the head neck tumor board director and we had a very interesting and informative discussion about my case. We talked mostly about my esophageal stricture and what other options I have besides dilations. Since my stricture is located by my voice box the surgery that would require taking skin from another part of my body would mean the removal of my voice box and would require a tube that would be permanently inserted in my neck. The second option would be for them to make a incision and cut the muscle to allow then muscle to relax, but is not garenteed to work. I have another few options as far as helping then pain and swelling all of which I am considering. His advice is to continue with the dilations before doing anything drastic and i agree. We also talked about my MRI and biopsy last month and since it is benign it just has to be watched again only time will tell.
Then I had a dilation done today, in was put under general anesthesia this time and it seemed to be much better than last time because of the breathing tube they could not inject the steroids. This next one will be the 8th one I have had in the last 7 months and am hoping they work. My body is getting tired from going under anesthesia and each time I wake up it seems to take me longer to recover from the last. Since I have never been under anesthesia at UW they had many questions they asked how many times I had gone under and thanks to Tims amazing record keeping we found since July of 09 in have gone under 12 times.
I guess I feel like my life is moving in a circle and i am fine with that as long as I am not moving backwards. You know how people say the definition of insanity is doing the same thing over and over and expecting a different outcome...well I guess i am insane but I have faith that these dilations will work and if not I did everything that i could and gave it everything I had and that's good enough for me.
All my love
Mary
The second appointment was a meeting with the Dr who is the head neck tumor board director and we had a very interesting and informative discussion about my case. We talked mostly about my esophageal stricture and what other options I have besides dilations. Since my stricture is located by my voice box the surgery that would require taking skin from another part of my body would mean the removal of my voice box and would require a tube that would be permanently inserted in my neck. The second option would be for them to make a incision and cut the muscle to allow then muscle to relax, but is not garenteed to work. I have another few options as far as helping then pain and swelling all of which I am considering. His advice is to continue with the dilations before doing anything drastic and i agree. We also talked about my MRI and biopsy last month and since it is benign it just has to be watched again only time will tell.
Then I had a dilation done today, in was put under general anesthesia this time and it seemed to be much better than last time because of the breathing tube they could not inject the steroids. This next one will be the 8th one I have had in the last 7 months and am hoping they work. My body is getting tired from going under anesthesia and each time I wake up it seems to take me longer to recover from the last. Since I have never been under anesthesia at UW they had many questions they asked how many times I had gone under and thanks to Tims amazing record keeping we found since July of 09 in have gone under 12 times.
I guess I feel like my life is moving in a circle and i am fine with that as long as I am not moving backwards. You know how people say the definition of insanity is doing the same thing over and over and expecting a different outcome...well I guess i am insane but I have faith that these dilations will work and if not I did everything that i could and gave it everything I had and that's good enough for me.
All my love
Mary
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