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

I'll be ok

I a couple of hours Tim and I will be leaving for Children's for my biopsy. My Mom will meet us so she can see me before surgery and hear what is going to happen. I still am not quite sure what is going to happen. I am sure as they always do they will explain it in detail. I am quite nervous and so is Tim. We are both not looking forward to spending a couple nights in the hospital but are but will be happy when the surgery is over. No matter what happens I will be ok. Thank you family and friends for your supportive and kind emails and text, it means so much to have so much support. Thank you. All my love

Mary

anything but

I am not really sure what to say about today. It all seems a bit blurry i think i have replayed it in my mind a thousand times. I still not sure what to think, or what it all means. My MRI showed... a lets call it a blob, mass of sorts i guess in my throat. I just remember my nurse saying its something we can't..i can't ignore.My first reaction when showed the scan and was immediately confused, denial was first. Oh i am sure its just a blob and blip on the screen or its just really really bad inflammation from my dilation yesterday. I guess i started to get concerned when she started calling the ENT surgeons to try and get a consult, and talked about a biopsy. I had a scope done and it was surprisingly reassuring for a while because you couldn't see a mass like on the MRI screen just a swollen patch of skin. Nothing really like my first scope looked like, no large mass that looked like a piece of cauliflower like before. When i came back to hemonc for some IV fluids and saw the scans again it started to sink in i think, seeing a gray area on the right side of my throat that was much larger than the left but still confused as to why it didn't show on the scope seeing people trying to analyze what it could be.

We won't know for sure for a while but the biopsy will be on Monday at Children's. They decided to let me go home on the condition that i come in Saturday and Sunday for IV fluids and that if by Monday i am still not able to swallow food i will need a feeding tube. I will probably be admitted after the biopsy on Monday as they will have to make an incision this time for the biopsy and will want to make sure the recovery is going well. I am assuming it will take at least a week for the pathology report to come back. I am still hopeful that it is not cancer but realistic in the fact that it very well could be. Just hoping and wishing that it is anything just anything besides cancer.