Hi!!

Long Post!

It's probably unnecessary, but I'm more than a little nervous about finally posting. I've really leaned hard on this forum several times without saying a word to anyone. I feel peaceful reading posts here. You all just... get it.

So here we go. I'm registered now and no longer "hiding!"

Here's the quickest summary/backstory about my husband's cancer that I know how to give. At first, we were told he had multiple myeloma. Then we found out it was really lymphoplasmacytic lymphoma. Thank God! We were both so new to this; we figured the experience would just involve lots of doctor visits and chemo treatments; and like with antibiotics, he'd be back to 100% after treatment. After all, it wasn't multiple myeloma! We thought. We're in the clear, life will be fine.

Towards the end of the lymphoma treatments, a hole appeared in his hard palate; a second cancer; squamous cell carcinoma. We got sent off to KC and we were given a set of surgeons who fluffed the issue. They would remove the tumor. They seemed to have no concept of what recovery looked like. Roses and butterflies. We were sent home to prepare for the surgery after being told everything was going to be fine; to prepare for a small denture like device. Yet, the idea of losing some of his hard palate was NOT FINE! He was scared, I was scared. We hadn't found this forum. I did find other people in the medical community that confirmed that we should be scared shi**less and to prepare for the worst. I warned Brice, my husband, that the surgeons seemed to be omitting some details and told him to eat like crazy.

Surgery day came. Surprise! All canine teeth and gums above them were gone without warning. The majority of the hard palate had also removed, not a small hole. He kept coughing up large amounts of blood and his nose wouldn't stop bleeding. He could hardly speak. He couldn't eat. He felt traumatized, mutilated, terrified, helpless. I can't tell you how many times I snuck away from him to cry; thinking he might catch pneumonia, or merca, or die from some other complication. It was the hardest time of our lives by far. I know now that trying to fake bravely while caring for him was a waste of energy. He couldn't fake it, either. It was rough.

That period, right after the surgery to remove the tumor, sucked up all of our initial confidence. We didn't trust his surgeons in KC post-surgery and we were just terrified of being alone at home together without a medical *team*. We didn't know what "was next to come." No doctor seemed to have an idea, except his compassionate and wonderful dentist hours away in KC, he understood the gore of it all and the horrible pain.

My husband lost over 20 lbs in two weeks. I didn't realize a human body could drop weight that quick. Eating was too painful for him. Our main oncologist said we'd have to think about a feeding tube. I begged Brice to eat, as if his life was in danger. I thought it was! He was weak from not walking at the hospital. He struggled to talk. His nose wouldn't stop bleeding. We were terrified beyond anything we'd ever experienced. We just had to wait and see; not trusting anything.

Time fixed that fear. (Reading this forum also REALLY helped.) He started healing and got comfortable with the obitratorandpromised to eat 2k plus cal/day. He's gained ALL the weight back! After many long talks, we decided that want to stay positive, busy and optimistic in our actions and conversations. We have so far! That awful time has ended and now we're on track again with so much hope.

With hope, we now understand how insidious cancer really is and what it means to FIGHT it.

We decided that, after 7 years, it was about time to get married. We agreed that I need complete access to him if he ever gets sick again, and him for me. We did Vegas on August 18th. We're very pleased and highly recommend getting married there, it was so intimate with just the two of us!

So, now we have some stress with me moving my stuff in at his place as well as marriage paperwork stress and that whole deal. But we like this kind. He's so determined to do well. I couldn't be more proud of him.

He's going through radiation now until mid-October and has some radiation rash and some steroid side effects "his hyperness is driving me nuts" but we're very pleased that these are the biggest challenges we have right now, beyond "normal" life.

That's our story so far. Again, I am so sorry for the length!

-Audrie

Im sorry you are having problems posting.

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Type your post and it should show up correctly.

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Now I can read your post. Thank you and welcome! Glad you were able to get the help you needed.

Best wishes with everything!