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

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

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

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

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

Waiting

Still waiting. Not quite sure what i am waiting for but i am hoping this week brings more answers.  Last week the surgeon who did my biopsy presented my case to head and neck tumor board at UW and they discussed a surgery option for the stricture in my esophagus. I am not sure as i was not present and apparently neither was the surgeon but the surgery would consist of them taking tissue from another part of my body and wrapping it around the stricture to hold it back and it would make eating easier.  They came to the conclusion that because i already have so much scar tissue adding new tissue would not help it would only make me aspirate my food. So it looks like at this point i have many more painful dilation's ahead of me.  I am not sure i really haven't been told much. I think that is the most frustrating part, i have no idea who to talk to or who would know what the best thing for me to do at this point is.

I think the plan is to figure out why i am having so much pain in the area still do more scans and possibly more biopsy's. It is frustrating not being able to eat food, but the pain is relentless, i was almost revealed when they did a biopsy because i thought finally an answer to why i am having pain. I know its not normal but just a small piece of me wishes that the pathology report did show something because it might give some explanation.  I have been able to eat more, i think the swelling from the dilation and the biopsy has gone down so eating has been much easier but the pain remains.  They want me to take antibiotics because they think i might have an infection from the biopsy and that is why i am having so much pain, and i guess that could be, but i have been having this pain for over a month before my last dilation and biopsy, those just seemed to make the pain worse. To make things more confusing i am still not really sure what showed up on my MRI, i am not sure if whatever it is, is even still there or if it will go away. only that it is not cancer. So more waiting, and normally i wouldn't mind but one day in pain can feel like one week, one very slow week. All my love


Mary

Hallelujah

riding the waves

IV fluids



Tim walking with me after my biopsy




Mary @ the Whale cafeteria



long walk back



The train evevator




so familiar, glad to be with the amazing nurses on the SCCA floor at Children's




Really wanted to ride a tricycle

 My biopsy was less invasive than planned. I woke up of course in pain and spitting up blood. After a nights stay lots iv fuilds and plenty of pian meds I was feeling better. They let me go home today and told me that they would have the results this evening if not early tomorrow. I have been in so much pain I am hoping it goes away soon. My nurse practitioner called today and Tim said he had never heard her sound so happy. She said that the pathology report shows no cancer. I still cant't believe it. Hallelujah! before I get to exited now the work begins to figure out exactly what it is. It's scary not to know but what could be worse than cancer. Quite a lot of the mass is still in my throat We will be talking about how to remove it as it is painful and is not making eating any easier. Thank you so much for your prayers support and love Tim and I feel so blessed. Only tomorrow will tell what's next and I can't wait for tomorrow. I am so lucky not only to have the support of family and friends but an amazing team at children's that has worked tireless to help me. Enjoy the pictures of tim and I walking around children's.
All my love



Mary