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.

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!