Do you consider yourself to have an invisible illness?

, Have you reached out to ASPEN (https://nutritioncare.org/) They may be able to help with referrals and advocacy. It is abhorrent that your former practitioner left you with no options. Please keep us posted. - Warmly, Donna (Team Member)

My medical oncologist feels that oral radiation is not needed and that immunotherapy is not particularly promising. Her view is that spread is what is most dangerous and so I am on surveillance. I see one of my surgeons, have a full body scan, and meet with the oncologist about the scan every 3 months. If the scans are good for some unspecified period, then the schedule becomes every 6 months. The main thing I deal with is anxiety about the future. While it appears that my cancer was detected early and that my surgery was deemed a success with wide, clear margins, from what I have read the 5 year survival rate for oral mucosal melanoma is around 35%. Intellectually, I know that doesn't necessary predict what will take place in my case but emotionally it is a kick in the pants, so to speak. My dental surgeon thinks that a dental prothesis is not viable, and that given the removal of gum tissue, implants might be problematic even with a maxilla bone graft. So, I might have to get resigned to eating only one side of my mouth, which has worked ok so far. I will get a second opinion about this though from the Yale dental folks who work with the Smilow Cancer Center where my surgery took place.

, I feel your anxiety. We always want to "fix" everything, or know that someone can. Not having that assurance does not feeds uncertainty. Having to adjust how you eat is bothersome but can be adapted.

I hope the second opinion provides a road forward to reconstruction. Dental care is so incredibly expensive. Let us know who things go. Warmly, Donna (Team Member)

I have just been diagnosed with rapid gastric emptying it was under an hour before it was in my small intestine and being digested. And gastroparesis. My stomach empties fast and my bowels empty slowly and not by themselves. I have to take Miralax every single day and if I miss a day I will be constipated for a week until I get everything going again even then it's still bad. With vomiting in the morning nausea in the morning like I'm pregnant. I was just diagnosed by lab exams and blood work along with the physical exam. I am going to a GI in a month and hopefully they will tell me what to do and how I can eat. I have a very very hard time eating and stuff hurts my stomach when I eat. I feel like I am starving to death slowly. I have a pituitary adenoma and they think I have Cushing's and they may have acromegaly at the same time. I have all the symptoms that have developed over the last 15 years. My feet have grown from a size 9 when I was 22, to a size 11 now. 2 years ago my feet were size 10 and a half. I have gone through three wedding rings in the last 16 years. My fingers just kept getting bigger and bigger and my hands got bigger and my nose got really big and my jaw has grown out. I used to have a really big overbite and now my lower jaw has grown forward so that the bottom teeth are actually chipping off because they strike the back of my front teeth now. All symptoms of acromegaly. Trying to get diagnosed with these things that are very rare along with oh I forgot. The doctor ran a genetic panel it turns out I have EDS, Elher danlos syndrome, which affects all the connective tissue in your body. I produced deffective connective tissue and so I dislocate all the time things that most people would never dislocate like ribs by coughing. Or my hip from turning. Etc it is extremely painful and you ache everywhere and your muscles feel like they are burning or fatigued all the time no matter what you do. It is debilitating and then I have all this other stuff going on. I feel like a medical freak. And I've been a health nut my whole life and have eaten no GMO no chemicals non-processed food for years and years since about 1982. Genetically I got the short end of the stick. I am just being diagnosed with all of this and exhausted going to doctors. But finally after all these years they are believing me that something is horribly wrong with me because I look so normal. That's the frustrating thing. If I was in a wheelchair or something then people would take me seriously that I am ill. And disabled. To remove the pituitary tumor I have to have brain surgery and a lot of times they don't get it all and it just grows back and some people have to have three times having brain surgery until it is gone or else they just give up and give you more medicine. So it's kind of up in the air whether I will recover from this. It's all so distressing. If this will let me I will give you a photo of my tongue which has swollen to about three times is size and I have a hard time keeping it in my mouth. This is acromegaly, a symptom of I mean.

, oh, goodness. I am so sorry you are dealing with all of this. I have a friend with EDS, so I do know a bit about the condition and how challenging it can be. I do hope that you and your doctors are able to decide whether the pituitary surgery is the best option for you. And, should you choose to get the surgery, I hope they get ALL of the tumor and it doesn't come back.

I know it's frustrating when you feel like you do everything right and take good care of yourself to end up with very serious, rare, life changing conditions. I am glad you shared here and please know you are not alone!

Best, Erin, Team Member.