Dear Bevan

Three hundred and sixty four days as husband and wife. And what a challenging year it has been. Who would have thought, as we stood amongst family and friends, that life would be so darn challenging this year? I think the universe knew that we needed a wedding, needed a marriage to survive it. Or maybe we knew, deep down that the timing was right. Eight years together, six months engaged, and then one month of being married before we would face the biggest challenges of our life—dealing with gallbladder cancer, chemotherapy, radiation, and a liver transplant.  Perhaps the craziness leading up to our wedding was practice?

In the two months surrounding getting married: We adopted a puppy. I defended my master’s thesis. I interviewed for my dream job. And got it. We moved halfway across the country in our 30 year old VW van. We found a place to live. We planned and executed our dream wedding, with oh so much help from our friends. We had a delightful tropical honeymoon. I started my new job. You started your new job. You ended up having emergency gallbladder surgery. We found out that you gallbladder was pissed because it was cancerous. Whew. And that was just July-October. It wasn’t exactly calm leading up to or following that storm!

I think back on our wedding and the entire thing just makes me so very very happy. Happy we have such talented friends and family to sew a dress, arrange our flowers, cook a feast, play music, prepare some desserts, take photos and give some amazing toasts! And happy that we decided to share vows, commit to creating a better, stronger, and more supportive relationship that either of us had ever witnessed before. It is so easy to be cynical about marriage as two children of divorced parents. But we are doing it. 

While planning our wedding we learned how to manage expectations, how to ask for help, and how to not get so caught up in details that you lose sight of the big important stuff, how to work together, trust each other, and most important, how to take in each very special moment and enjoy the heck out of it. And we couldn’t have got through this year without those skills.

One of the criteria for being listed for a liver transplant is a psychosocial evaluation by a social worker.  In that report it states “Mr. F has been married to his wife for the past one month. They have been together for eight years, but were just recently married. Mr. F’s wife is extremely involved in his medical care and very supportive. She has been aware of his illness for all the years that they have been together and will be a primary source of support for her husband at the time of transplant.” How odd it is to read those words, know that the strength of our relationship was evaluated and one of the criteria for being listed for a life-saving liver transplant.

As we approach our anniversary I remember with such vividness that feeling, as we drove to Wyoming days before our wedding, feeling the stress of grad school, the stress of last-minute wedding planning being left behind.; the endless expanse of prairie ahead of us and nothing but joy in my heart as we redefine our relationship, making it stronger. And I feel the same way, leaving the doctor’s visits behind, the weeks of poor appetite, the hospital rooms, the tubes and cords, and the daily discussion of liver enzymes. My heart is full of joy as we approach the next stage of life, whatever it brings, stronger for where we’ve been.

One month post transplant and so much to celebrate!

Yesterday marked the one month anniversary of B's liver transplant. Things continue to go very well and recovery continues it's slow march forward. All good stuff. In addition:

1. We are celebrating our 1 year anniversary this Sunday!  And what a year it has been! Here's to year #2 being better than #1. 
2. We just signed a contract on a house! It is one of the deed restricted homes being built in Frisco, construction will begin in September and end in February. Woohooo!  You can see it here. Don't worry, we'll still have an extra bedroom for when you come to visit.

To celebrate we went out to a nice dinner at Blue River Bistro last night. Super fancy schmancy, live music, and delicious (and rich) food.

Tips for dealing with insurance

1. Be very very very nice. If they have a southern accent use "sir" and "mam"
2. Do something else at the same time. It is important to be patient, sitting on the phone waiting doesn't help. 
3. Have everything you could possibly need in front of you, claims, explanation of benefits, ID numbers, etc
4. Don't be afraid to use their language. I had several people asked if I worked in the medical field. No, I just paid attention. ICD9= diagnosis code. Gallbladder cancer is 156.0 PSC is 571.6.
5. If the person you are talking to isn't helpful, hang up and call back. Sometimes you get someone really good... save up a bunch of questions for when this happens!  A helpful insurance person is like gold. 
6. Don't assume that just because your doctor recommends something it will be covered by insurance. We got stuck paying for a PET Scan, ordered by a doctor and recommended by several other doctors because it was deemed experimental and investigation for gallbladder cancer. This isn't the end of the world, our insurance has otherwise been so wonderful that we're willing to over look this, but a good lesson was learned. 

healthy food

We are trying very hard to cook healthy, local, real food now that we are home. One of the biggest challenges during chemo was that Bevan's appetite was very finicky. There were weeks when all he wanted to eat was Pho. So we ate out a lot, usually picking up a bowl of Pho and some spring rolls from a mediocre Chinese restaurant in Dillon. This was compounded by both of us just being so exhausted all the time--Bevan from the chemo and me from trying to keep up the balancing act.

One of the things we've really enjoyed in this past week home has been reconnecting with our kitchen. I've still not been working full time, and have been spending a lot of my time off in the kitchen or planning meals. Bevan's diet and appetite now call for very well balanced meals, lots of veggies, whole grains, protein, but low fat. Awesome--can do.

We are also trying to save some moolah, and eating in (even with our gourmet tastes) is so much cheaper than going out. Plus, to be honest, the restaurants up here aren't really that great.  I'm really hoping that we can keep this going, and maybe trade off cooking nights once B starts to feel better.

Tonight: roast chicken, green beans sauteed in almond pieces and some wild rice.
Tomorrow night: Chicken tortilla soup with the left over chicken.

Normalacy

Who knew that spending a weekend cooking, going for short hikes, and laughing at our goofy dog could be so enjoyable?  Bevan and I keep looking at each other, smiling, and letting out a big group sigh. We got through it!  We can move forward.

Both of us have returned to work. Bevan's phone has been ringing off the hook with instrument repairs, and he is tentatively taking on a few of those. It is nice to sit at my desk and reengage in the whole work world that I left behind 3 weeks ago.

Bevan reminded me yesterday that he has had six major abdominal surgeries in 8 years. Wow. I think the guy deserves a break.  Hopefully this is it!

Home sweet home

Following Bevan's clinic visit this morning we packed up and headed home. It feels wonderful to be back up in the mountains! The cool, fresh air almost makes up for the rather unpleasant smell coming from the fridge. Ah well, stuff like rotting vegetables sure seems pretty insignificant these days.

The clinic visits are now feeling routine. Bevan get's his blood drawn, then has a chance to meet with a doctor, the transplant coordinator and occasionally the pharmacist and the social worker. It is nice to have regular chances to ask questions and check in. In the afternoon we get a call from the transplant coordinator with information about the results from his blood work, most often an adjustment of doses of his anti-rejection drugs.

I think being home has really helped it sink in that we are on the other side of this whole ordeal. No more chemotherapy, no more not being able to make long term plans, no more looming liver transplant. Pretty awesome!