Life Interrupted--New York Times column on young adults with cancer

I just read this article that so clearly summarizes many of the experiences of being young and facing life-threatening health problems: http://well.blogs.nytimes.com/2012/03/29/life-interrupted-facing-cancer-in-your-20s/?hp

I was particularly struck by this paragraph:

"Cancer magnifies the in-betweenness of young adulthood: You’re not a child anymore, yet you’re not fully ready to live in the adult world, either. After my diagnosis, I moved back into my childhood bedroom. And as I get sicker, I increasingly rely on my parents to take care of me. But at the same time, I’ve had no choice but to grow up fast. Daunting questions that most of my peers won’t have to consider for many more years have become my urgent, everyday concerns: How will I hold onto health insurance if I’m unable to work? Will I be able to have children? How long will I live?"

More good news

Bevan recently had his "six" month post transplant check up and CT scan. This was something recommended by his oncologist at six months, one year, and two years to look for any signs of recurrence. There is perhaps nothing more terrifying than, after a blissful half year of no doctors, no chemotherapy, and the space to finally look forward, having to face the big C all over again. On more than one occasion I entertained the idea of not reminding Bevan of this appointment, letting it slip through the cracks and continuing to live our blissful doctor-free existence. After all, what good would come from this appointment. If they did find the unthinkable, what more could they do? Would we actually have any more options?

But, ultimately we both realized that the uncertainty of not knowing could be a much greater torture, Bevan scheduled a CT scan and follow up appointment. I've often joked that I won't miss any of these types of doctors appointments because they are the moments that Bevan appreciates me the most. And this was no exception. There is something so comforting about being able to hold someone's hand and talk about little articles in magazines in the waiting room. In these moments I also appreciate him the most--how much strength do I also find in having someone to face this tough world with?

The wait was unusually long, the tension unusually high. But the moment the doctor walked in the door his body language and cheerfulness communicated all we needed to know. No sign of cancer returning.

To celebrate, B and I had a very nice date to Strings as part of Denver's Restaurant week. As usual, we skipped the wine, but who would really miss it with good news like that!

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!

Thanks for all the support!

Wow, thanks for all the help finding a place to stay. I can truly say we were overwhelmed with great offers and suggestions. Thank you thank you thank you.  We are now staying at Staybridge Suites, an extended stay hotel by the airport. It is very nice, has a kitchen, and affords us the privacy we need right now. It is a bit far from...everything, but I think that will remind us not to over do the activities.

The past few days were great. We stayed with some friends near downtown. It was great to enjoy the company, the shady backyard, good cooking, and their lovely home. Bevan has been feeling pretty good, and we enjoyed the hint of normal life. I spent the past two days helping them with yard work and some home renovation projects. It is so satisfying to do hard work with tangible results, good stress relief.

Bevan has clinic visits Monday and Thursday. They take about 2 hours, it is an opportunity to meet with the docs, discuss any concerns, make any medication adjustments and check his blood work. They will be bi-weekly for two weeks. The first one (this week) we'll stay in Denver, and then head home (to Frisco) Thursday after his appointment. Next week we'll just drive down for the two appointments, unless the car ride is too painful for Bevan, then we might stay here Monday-Thursday. If things continue to look good, then we'll start attending clinicals only once a week after that.

Thanks again for the out-pouring of solutions to our housing situation. We feel loved.

Cancer FREE!

The doctor just came in with the final pathology report from the biopsies they took during surgery. No cancer!! Please join us in doing a happy dance!  Right after surgery he told that their initial tests showed no cancer, but they were sending in more tissue to the lab for more comprehensive testing. We've been choosing not to think about those tests or the possible implications until now. I think this puts Bevan squarely in the category of Cancer Survivor. Yippy!!

Time for a change of scenery

It is official--B is being discharged today!  I didn't write yesterday because it was just too good of a day--I couldn't take the time to sit in front of my computer.

Getting discharged from a hospital isn't a quick task. There are prescriptions to fill, IVs to disconnect, and papers to sign. I'm guessing we will actually walk out the door sometime this afternoon.

Unfortunately, the place we were planning on staying, the Transplant Living Center (TLC) doesn't have any available rooms. This leaves us in the position of sifting through a less-than-awesome list of hotels. Most won't recognize the discounted rate, all are quite far away, and none seem to really meet our needs well. To be honest, I'm a little irked that there aren't better options, it seems a little harsh to require us to stick around Denver, but not really have any options for places to stay.

I think we may rely on the generosity of  our friends and stay with them tonight and then spend a bit more time researching options tomorrow (and hoping for availability at TLC). If anyone has any recommendations for reasonably priced (under $100 per night) hotels that have mini kitchens, please let me know.

Food in + Food out = happiness

I'm sure B loves that I'm blogging about his bodily functions. But it is a pretty important part of the recovery process right now. I won't go into the details, but lets just say that the guts seem to be doing their job and he is finally able to eat. He hasn't had much in his system since last Tuesday, and due to the side effects from chemo, didn't have much food the week (or month) before surgery. I think he will be out of the hospital soon--don't want to risk saying anything more specific. We need to stay in Denver for 1-2 weeks, so I think we will stay at this place called the Transplant Care House, which has apartments that are available for people in our exact situation. I'm sooo looking forward to having a kitchen and B having an appetite again.

If anyone has any recommendations for good, easy, hearty, low fat, low vegetable meals, please post to the comments or email me!

Prayers for our donor family

It is so hard to make sense, emotionally or rationally, of the fact that all of our joy, relief, and excitement over Bevan's recovery is only made possible because of another families tremendous loss. I don't quite have words to understand, much less explain this jumble of emotions.  I feel so grateful to them--the family that, in such a difficult time, chose to donate their son/daughters organs.

I really think that having friends and family sending positive thoughts and prayers has helped Bevan. Can I ask you to join me in praying for that family, who lost their 24 year old son/daughter/brother/sister/friend?  I hope to some day write them a letter, telling them how amazing Bevan is--how something so good came out of something so tragic. Not ready yet, but hope I find the words some day. 

Recovery is speeding up. Yesterday a few more tubes came out, today even more. Bevan has been walking around the floor every few hours. Perhaps most exciting--he has been able to tolerate a bit of broth and juice. It is so refreshing to see these improvements, especially with the challenges he faced during previous operations.

The photo is from yesterday right after they removed the ng tube (a particularly terrible device he has been fighting with for days. I'll spare you the details).  Note the smile! I was going to avoid taking photos in the hospital, but this was just such a joyful moment. And he looks even better today.

More small steps in the right direction

Another day of oh-so-slow recovery.  Bevan's liver enzymes continue to go down, the doctors are in good spirits when they visit, and the nurses take a very long time to answer his calls--all signs that he is doing well. He took two short walks around the floor today, a necessary step towards recovery (ha! excuse the pun).  I think there are two challenges now--continuing to maintain my patience at the very slow paced recovery and not getting so optimistic that I don't allow for "speedbumps" in his recovery. It just sounds like it is so common for people with transplants to have at least a few issues in the first weeks, months, and often year with a new liver. We'll hope for the best, but not get discouraged at minor set-backs. After all, Bevan has a new, working, disease free liver and all signs point to him being cancer-free!

We are also measuring progress by the number of tubes, wires and drains removed each day. One more left yesterday, another last night, another this afternoon. Still quite a few to go, though. Preparing for those short walks is no small task.

His mom also showed up today. Aren't moms just the best?! It is pretty clear that there is absolutely no substitute for motherly love.

Good things from today:
- Moms
- A few guilt free hours by my self
- small steps in the right direction (both literally and figuratively)

Things are looking up

Bevan is doing much better. Liver enzymes have gone back down, he has quite a bit more energy, and he doesn't have the yellow jaundice skin he had yesterday. The second surgery seemed to help, I think it is just increasing blood flow to the new liver.  He is still sleeping lots, but is much more comfortable and it seems is more clearly on the path to recovery. He even got up and sat in a chair this morning--no small accomplishment after two major abdominal surgeries yesterday! We are also counting the number of tubes and wires they are disconnecting. He still has at least a dozen wires and tubes coming off him, but we've also watched at least 4 or 5 be removed.

A few people have asked about long-term recovery, how long we will be in Denver, etc. The short answer (of course) is that it all depends. However, we are looking at another 5-10 days in the hospital. After that we'll have to stay close while they try various combinations of anti-rejection/immune suppressant drugs. For most patients this takes 2-3 weeks with almost daily appointments. Once the frequency of appointments decreases we'll head back to Frisco but still come down for weekly check ups. Long term recovery varies significantly by the patient. Chris Klug, Olympic snowboarder who received a liver transplant at this hospital was back training for the Olympics 1 month post transplant. Others have told me that it took them 3 months to get settled into their new-normal.

Some one suggested I jot down a couple of Good Things each day as a tool for staying positive.  Good things from today include:
- Bevan feeling better! (obviously!!)
- A full night sleep for both of us
- Finding the best little coffee shop/cafe hidden in one of the medical school buildings

A few challenges

Well, Bevan has hit a few to-be-expected roadblocks. They were measuring low flows from one of his major arteries to the liver, along with elevated liver enzyme levels, which together had the doctors worried about a blood clot or constriction to blood flow which could have very quickly lead to an emergency situation and possible liver failure. They decided to open him up again, investigate and determine the best way to proceed. We just got the report from the surgeon that when the got in there everything looked fine, he just has very small arteries, possibly made worse by the radiation therapy he received earlier.  As a precautionary measure they put in a graph of a slightly larger artery, which increases blood pressure to the liver. He is currently recovering and will be back in his room soon (and not the ICU as they indicated earlier). The remaining concern is that his liver enzyme levels are remaining elevated without a clear explanation.  The docs feel comfortable monitoring him over night and just keeping an eye on things.

This is a good reminder about balancing optimism and realism. I think one of the challenges of having this blog is tempering my burning desire to share an optimistic outlook--sharing good news with friends is so much easier than sharing the challenges. We aren't out of the weeds yet, not by a long shot.

Bevan has a new liver!

Surgery was successful and Bevan is recovering. Everyone has remarked about how well things have gone--the donor liver was really good, they didn't find any signs of cancer when they opened him up (by far the biggest relief), and the recovery staff and doc all feel he is recouping well. Sigh. Thanks for all the thoughts, prayers, texts, emails and telepathic communication.

update

Just after I posted that the liver arrived and Bevan went back for surgery. They are anticipating a 6-8 hour surgery. It is going to be a long night. I'll keep you posted.