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.

Stress

Today I had my throat dilation done at UW. This was the first time I had one done at UW and had been informed that it would be different than how Childrens did their procedures. I was not put under general anesthesia I was given some sedatives. It was quite painful, when it was over the doctor came in to talk to Tim and I and explained that it was tighter than he thought it would be he said that it had closed up so much that he couldn't get the pediatric scope down to do the endoscopy and wasnt able to inject steroids into the tissue like he had planned. The steroids are supposed to help with the inflammation and formation of scar tissue. He did dilate my throat but I will still need many more done as it seems that I am almost back to where I started. I really didn't expect it to be that bad, especially for having 5 of them already done since September. I was in a lot of pain and coughing up blood and still am but not as much. I am at home resting and have some pain meds but they do not seem to be helping. I am not able to eat or drink anything because the pain is so bad and I cannot even swallow my own saliva. I feel like I am going through radiation again. I am very concerned as these procedures are painful especially without the general anesthesia, I asked if next time in two weeks for the next one if I could go under he said it's possible but the breathing tube would make it very very hard to get enough room in my esophagus to dilate it large enough.

The most frustrating part is I feel like I am not getting anywhere. Yes I do not have cancer, but I do have a large mass of sorts just growing in my esophagus with no real cure or sure solution. I am hungry and I just want to eat and have the energy I used to, I have no energy because I can barely eat and when I do it takes a long time and patience....patience that is starting to get very thin. My throat has been hurting since december I have been on two different antibiotics and still it has been painful after today I would say it way more than painful.

Tomorrow I have a long day at childrens and my Dad will be taking me, I have my usual scans and some results from some tests. ct, MRI, ultrasound blood work and then a check up after to talk about the scans. I am so stressed out I really hope everything looks good. These will be my 9 month scans. Even if they are clean I still have quite a lot of appointments next week and more tests to figure out why my throat is so red, why I'm having chest pain and to have a very suspicious mole looked at. So lots to keep me busy, just wish it was school things or something more exciting than hospital visits. I will have the best company tomorrow I can't wait to see you Dad, you Mom and Tim are my good luck charms and let's hope for good test results and cancer free scans!

Just a Dream

It has been a while since i have posted on this blog. Mostly because a while back Tim got a new MAC desktop and i just haven't felt like tyring to figure out how to work it, and also because i honestly really didn't feel like posting anything.

To catch anyone up that might still be flowing this blog, i will try to start from the last blog. Since that time i have had about 2 more throat dilatation's, my 6 month scans, finished my treatment for my blood clot, haven't gained a single pound or gone on our honeymoon, gained some chest pain, other GI problems and strep throat along with some other minor but annoying health problems. Overall i would have to say things are going well. Besides the sever lack of sleep, it is currently 1 :40 in the morning and for some reason i have no desire to sleep. I am in the process of transferring most of my care to UW and it so far has been very repetitive and quite a lot of paperwork. They are very helpful and i am very fortunate to have some of the best specialists. Although i do miss the colorful hallways, stickers and lollipops after scans,xrays and labs, and seeing the friendly familiar faces of everyone at Seattle Children's it also feels good to be moving on. I will still be going to Children's for my scans every couple months. I have been navigating my way through my new health insurance and as always am grateful that i have such a supportive and hard working family that are always willing to help.

Currently, i am back in school auditing some classes i have already taken and am beginning to realize how far behind i am. I am working very hard to catch up but it is proving difficult with still having appointments almost every week. Only time will tell but i am hoping to stay and be caught back up before classes start in Feb. I have an appointment on Wed at UW with a specialist in the digestive disease center to talk about the next esophageal dilatation that should be in the next week or so and what the plan will be for the future. I have my 9 month scans early in Feb and i am looking forward to hopefully hearing good news again. It will be nice to be in school and just be able to concentrate on school and not my health. We will be starting our clinical practicums this semester and its exciting to be able to research where i want to want to go.

Timothy is doing great he is working, playing soccer and of course taking amazing care of me! We are enjoying married life but really are looking forward to taking a vacation. We and when i say "we" i really mean Tim will no longer be managing the buildings we live in. We are so extremely grateful to our company for being so understanding, compassionate and willing to work with us the past two years it has given us great experience and couldn't have asked for better property managers. We will still be in the same apartment just have to pay rent, we are looking to buy a place but are not in any hurry and Tim is really looking forward to no longer having the responsibility of the buildings. I am going to get my hair cut for the first time in a year and a half, for some reason i am scared that it will look bad. I think i just have to remember that it has been worse. My throat is feeling, well painful and swallowing food is still a big issue. I don't enjoy choking on food as it is one of my favorite things. I have eliminated dairy from my diet and that has really helped with my stomach pain and heart burn but also has eliminated quite a lot of the soft foods that i would normally eat, and the calories that i rely on. These are all things my new GI Dr gets to hear about on Wed, and again i will have to start from the beginning. I am hoping to have some tests done just to see why i am having so much pain in my throat either way i will find out soon enough.

I have found life after treatment to be more difficult than i imagined. Not that i thought i would just wake up one day and say wow i feel great everything is completely normal just like it was before. I just thought i would be feeling better than i am. Hindsight is 20/20 but when i started this i thought it would be different. I never really thought much about how or why i got cancer why. Sure i wondered if i drank some weird water, or ate too many packages of Swiss miss hot chocolate, jumped on the trampoline too many times, had to many multivitamins. Honestly I don't think there is any reason i got cancer. I don't think it is because i deserve it, or did something terribly wrong. I think it is bad genes, luck of the draw. Friends always would say how strong i was and that they couldn't handle cancer if it was them. I remember thinking i probably can't Handel it either but when you are faced with it what choice do you really have. Sometimes i would get a little bit of jealousy seeing friends backpacking though Europe, being nannies, going out for drinks and dancing and not worrying about health insurance. I would like to be that innocent again. Its funny doctors tell you to look for signs of recurrence. I feel like i am walking a thin line between being conscious of my health and feeling like a hypochondriac freak. For me life after cancer has left a bit of fear and pain that doesn't go away even after treatment is over. Cancer has made me so real and open. It has in a way given me an extra backbone, i have become more outspoken, i guess i am just not as nice as i used to be. It has also given me the ability to love, love in a way that i did not experience before and allowed me to find my voice and a understanding of life, friendship family, love and things we cannot control. Oh and when i hear Doctors or anyone one say that their are "good cancers" it just makes me want to vomit because lets be real, cancer is never good even if it is a "favorable" cancer no one really favors cancer. Sometimes i feel like it was all just a dream, and i am still waiting to wake up.

All my love

Mary

Ng tube...

Today i went into the clinic because in the past couple days i haven't been able to swallow very much. I lost the 4 pounds that i had gained from my last dilation. I choked on a taco last night, i had a piece of ground beef stuck in my throat..it felt like forever before it came up and i realized that it was so much worse than i thought. The surgeon who does my throat dilation is on vacation so i had to get a NG tube until Monday when i will have my 4th dilation done and hopefully be able to eat again! Its not awful having the Ng tube so much as how awful it was to have it put down. Since my esophagus is so narrow its really hard to get it to go down...so something that used to take 2 minutes took over 10 and it was awful. I am home and at least the stress of eating is less. I just hope that next week Monday i get more answers and not just a dilation of my throat, because it seems to work for a couple weeks and then i am back to nothing. Its almost a tease..what do they think i am not hungry. A little preview, oh you can eat enjoy it for a week and then its gone. I am hungry and i do want to eat, hopefully Monday i will be able to....again!

Recent pics

waiting for surgery


waking up


swollen


tired


External pneumatic compression for prevention of DVT

goodbye gallbaldder!

Wed i had my gallbladder removed! I stayed in the hospital for two nights afterwards. I am healing ok just in pain, and am worried that i might have an infection. The plan was to put in NG tube while i was a sleep so the pain wouldn't be so bad, but they couldn't get it to go down, when i woke up i my throat hurt so bad and coughed up blood for a couple days but the pain in my stomach is far worse. I can finally sit up. Eating is going great though, i have been able to eat a lot more food than i thought i would and so far everything looks good. Tim and i really wish we could have attended Brian and Jenny's wedding this weekend, i hope it was amazing and we miss all of you! All my love and goodbye gallbladder!

Mary