pdx

In March we met Drew and Amber in Portland to do what we do best, eat and hang out. It was an amazing trip and we can't wait to repeat it.

We spent our days wandering around the Pearl District, hopping from meal to meal, and even took in an OK GO concert. Our evenings were spent in an amazing Airbnb chatting, playing games, and enjoying each other's company. We travel mellow, people.

Make sure to Check out Tasty n Alder, Salt & Straw, Blue Star Doughnuts, Heart, Stumptown, Andina, and Porque No if you're ever in the area. 

recovery

(Full Disclosure: Caleb and I started this as a travel/personal journal for the two of us. Over the past year it has been an efficient way to keep friends and family in the loop with my what’s happening with my health. But first and forever foremost, it’s a personal journal for us. That’s how I try to write for it. I’ve had a couple friends say to me “I can’t believe you’re comfortable sharing these things.” I’m not writing this with the intent of sharing it. Most posts anyway. This is for me. For us. If it’s too much, don’t read it.)

I haven’t kissed my husband in 33 days. 33. If you’ve been around Caleb and I for any length of time, you might describe us as my friend did last week. “Yea, you guys are touchy feely.” We are. We snuggle, we hug, we hold hands, and we kiss. It’s just what we do; it’s how we communicate. This has been the hardest recovery yet and it’s not over. The surgery damaged a nerve that controls the movement in my right arm. I’m still unable to turn my neck from side to side and can only lift my arm about six inches. I can’t lay on my right side and sleeping is painful. Snuggling is out of the question and hugs are difficult. Having that taken away from us has been one of the hardest parts of this for me. Dr. Weisman has prescribed physical therapy and says that with time and work the movement will come back. I’m hoping soon, to say nothing of missing out on snuggles and hugs, it’s also my shooting arm for photography.

The physical pain from this third surgery was more than I was prepared for. Even after two surgeries, I thought I knew what I was in for, but this one threw me. And staying in the hospital made it that much worse. You don’t sleep in hospitals. You’re poked and prodded and woken up every two hours to take meds, take vitals, or have another needle stuck in you. I wouldn’t wish this past month on anyone.

After October’s surgery we simply waited. We waited to hear about appointments, about insurance, and from the tumor board. It was limbo to the nth degree. The loss of control could have been crippling; it was for a bit. We couldn’t do anything. So I decided not to dwell on it. Maybe that wasn’t the healthiest thing in the world to do but I just couldn't handle it. Should I have prepared for the worst? Perhaps. But preparing for the worst wasn’t going to make the worst any more bearable. 

Three surgeries in thirteen months is no small thing. In the last week and a half before January 27th I started to lose it a bit. The days started to feel like a countdown clock as I wrapped up projects and started putting things away for “later”. Everyone tried to take my mind off of what I was headed for. Caleb, Tim, Jess, Jared and Marley took me out for a night downtown and I had so much fun. Caleb whisked me away to Santa Barbara the weekend before surgery and we were able to let go of all the worry and just be with each other.

When you get sick people really come out of the woodwork. It’s amazing how loved and supported I felt leading up to surgery. Friends and family were constantly sending messages, cards, and texts. And even random people were chiming in with their love and support via Facebook and email.

Caleb and I spent the morning in pre-op taking selfies and talking about anything other than what was about to happen. Dr. Weisman was running late so the wait was a bit longer than we anticipated. About 10 minutes before heading into the OR he stopped by and marked up my neck. “We don’t want to go in on the wrong side now, do we?” They always rattle off this joke and I never find it amusing. No. No, we don’t want to go in on the wrong side. How hard is left and right for surgeons? You would think that would be day one in medical school.

My nurse then pumped my IV with some fluid and said, “This is just going to help you relax. We won’t put you under until we’re in the OR. It’ll feel like a really strong margarita.” It felt like two. But I wasn’t complaining. I vaguely remember being rolled down the hall and chatting with my anesthesiologist and OR nurses before everything went black. Who knows what I said to them. They probably have all my passwords or something.

As soon as I woke up I knew this recovery was going to be far more difficult than anything I’d yet been through. I was groggy, more so than waking up after my last two. It had to be the morphine. I could hear Caleb’s voice nearby, but I couldn’t seem to keep my eyes open. After my last two surgeries I felt sleepy but not disoriented and I always asked for a pen right away and wrote the word “husband”. For some reason he was never allowed to sit with me until I woke up. This time I heard him. So I had either been in and out of it and had already asked for him, or he had been sitting with me for quite some time and I just couldn’t remember.  There were a bunch of hands all over me, and despite being snuggly with Leb, I don’t particularly like being touched by others. All I could think was “Leave me alone, stop touching me.” And then my groggy brain realized I was being moved to a different bed. Which meant I was leaving recovery and headed for the Med Surg floor.

The pain was indescribable. Even with the morphine. My throat was on fire from the breathing tube and I couldn’t feel half of my head and neck. It felt puffy and swollen, like a horse had stood on my neck and face for a bit. Despite the numbness the pain was excruciating. How could I not feel anything and yet feel everything? Like I said, indescribable.

I arrived on the floor during a shift change. Worst decision ever by God knows who. The nurses seemed to have no idea who was watching me. I had my vitals taken by four different women in fifteen minutes until finally I could hear my mom say “She’s had that done four times already, could you guys leave her alone?” “That’s right, get ‘em Mama Bear” is all I remember thinking. My head was screaming and I was somehow able to communicate that to Leb and Mom. I guess severe headaches are a side effect of morphine? They covered my eyes with a mask but couldn’t keep my roommate quiet.

The first night was spent in and out of a morphine cloud and next to a very loud and lousy roommate. Every voice, every noise from her TV was excruciating. Recovery? In a hospital? You NEVER sleep. How the hell are you supposed to recover? 

When Dr. Weisman’s resident dropped by the next morning he told me I couldn’t go home until three things happened. I had to be off the morphine. I had to be up and moving. And most importantly my drain had to be producing less than 30 ccs of fluid.

Ok. Challenge accepted.

I stopped asking for morphine. It was burning the crap out of my arm anyway and making me horribly groggy. Not to mention the splitting headaches. The downside was that the alternative were pills; Percocet to be exact. I couldn't even swallow veggie broth. They cut each pill into four tiny pieces and I tried as hard as I could to swallow each piece with a tiny sip of water. That went on for the rest of my stay.

That afternoon I started taking laps around the unit floor. They have this painfully embarrassing whiteboard chart with each patient’s name and additional columns for laps completed. Apparently if you reached a certain number of laps it was a mile. They even had little magnetic race cars so you could make it a competition if you wished. Leb liked moving the car each time we passed it. I just wanted to be home. I was far from a mile that first day. Four laps would have to do.

The next two days were more of the same. No sleep, vital checks, pain pills, laps, crappy vegetable broth, and vicious cycles of pain. The nurses were horrible about getting my meds to me on time, usually a half hour behind, and by then not only had my pain built, it was running away with me.

Finally on day 4 the drain was removed (which was one of the most terrible feelings) and I was allowed to go home.

Once we arrived home it was more of the same. No food, lots of pills, and sleeping on the couch for two weeks. My wonderful couch is made mostly of pillows and each night Leb would pack me in like a can of sardines so that my neck and shoulders were stabilized. Mom and Caleb have learned how to manage my pain from the previous two surgeries and instead of it building steam like it had been in the hospital they were able to take the edge off.

After two weeks of liquids I started to venture into some soft solids. I am now able to eat most things, although slowly, and have been off heavy painkillers for about two weeks.

I’m a month out from surgery and I’d say I'm functioning at about 60%. Each day gets a little bit better and I am hopeful that I will be back to my old self soon. Caleb and I have quite a year coming up and there’s no room for cancer on the calendar.

The unbelievably good news is that there were no more cancer cells in any of the tissue removed. I won’t have to consider radiation and I’m on a monitored schedule that includes a combination of scans and visits. I will gladly take all the pain I’ve endured for a prognosis like that!

Thank you to everyone for all of the well wishes, the cards, the flowers, and the social media messages. They mean more than I can say.

post surgery round three

Caleb here, sharing a couple emails I sent to family and friends after Jen's third surgery.

January 28, 2015

Just the latest on how Jen is doing after surgery.

She had surgery Tuesday afternoon here in San Diego at UCSD Thornton Hospital. It lasted about 4.5 hours, after which her doctor came and talked to myself and Jen's parents. He mentioned that the surgery went smoothly and she did well.

They took a generous portion of tissue from her right tongue, the same area as before, and also went into the right neck for lymph nodes (although he seemed surprised there weren't very many there).

Preliminary tests on the tongue tissue were negative and he didn't find anything abnormal.

There will be more pathology tests on the tongue portion and the neck portion over the next week.

Jen and I stayed overnight last night, and are again tonight. They placed a small drain for her neck incision that they are monitoring and she is still on an IV as she can't eat anything besides liquids right now. Vegetable broth and non-acidic juices so far. Percocet for pain. She'll probably stay tomorrow night too.

She has been able to get up and walk around, doing 15 laps around the floor today. 

We're optimistic that the tests will come back negative (which I still find to be a strange way of labeling "good news" in the medical world).

If the tests come back negative she will be back to watching and monitoring via CT and PT scans.

If it is positive at all, they'll probably recommend localized radiation.

Thank you for all the emails, texts, calls, and social media messages. They mean the world.

February 5, 2015

This should be the last update on Jen for a while because we got good news at her doctor today! 

All the tests on her tongue and neck lymph nodes all came back negative.

The doctor said she is recovering well, he removed the stitches on her neck, and she'll need to keep going in for check-ups like before. Might get an MRI in a few months.

The recovery is slow going at home for Jen. Lots of rest, still not talking at all, all liquid foods still. 

surgery round three

Hey guys. Jen here.

I've been getting a lot of questions from people in the last week about surgery. When is it, what's involved, etc.

We have an official date for surgery.

I have a pre-op appointment on January 23rd to go over more specifics. I go into surgery on January 27th. The procedure is expected to take about 6 hours. Dr. Weisman will be removing more tongue tissue to pinpoint the source and removing all the of the lymph nodes in sections 1, 2, and 3 of my neck. He may have to put in a skin graft to help my tongue heal, he's going to make that decision while he's in there. He said my poor tongue has been though a lot and might need more help healing this time. He will also put a drain into my neck to help with the healing of the lymph node removal. 

I will be staying in the hospital for at least one night. Dr. Weisman said to expect at least a 24 hour stay, and depending on how well I'm healing they'll let me go home. From what we understand the concern and reason for the hospital stay is the drain and the possible complications it could cause. 

I hope you all had a wonderful holiday season and New Year! We had a great time in Petoskey, MI with Caleb's family. 

See you on the other side of this one.

the next step

Hi Family and Friends.

Jen again.

I wanted to share a photo of the family at Thanksgiving and also update you on the next stop on this lovely path we're on. But first the photo.

Awwww.

Now on to the sucky stuff.

As you know, my doctors have decided not to radiate at this time. Instead we are headed in for another surgery at the end of January. This surgery will be very similar to the last two and at the same time, entirely different.

This time, Dr. Robert Weisman, an ENT oncologist, will be performing the surgery. He's basically going to do a staging procedure. He is going to remove uniform samples of my tongue. When we've gone in before, we've gone after affected areas and essentially just kept digging until we had clean margins. This time he is going to take out a uniform piece at each level to see where the cells appear in the tongue. We are also going to remove the lymph nodes in sections 1, 2, and 3 in my neck. At the end of the procedure and after running the pathology there are two possible outcomes. He will either be confident that what he found was small enough or contained enough that he got it all and I will be on a watch and wait regimen again. Or he will find it in too many lymph nodes to be comfortable with doing nothing. At that point we will discuss things like chemo and radiation. He seems hell bent on keeping me out of radiation, and I'm all for that, considering the long term effects.

The surgery will be much more intense than the last two and instead of being an outpatient procedure, I will most likely have to spend a night or two in the hospital. He will be inserting a drain into my neck to help it heal. Once they are confident I am healing well, I am allowed to return home. The recovery will be similar to last time, but a little more prolonged as each time we do this my tongue takes more and more time to heal.

We do not have an official date for the surgery as of yet because our insurance is changing at the start of the new year and they refuse to run preauthorization on everything until we have the current information. So we should have a date in the first week of January, hopefully. Right now they are holding January 27th for me, but we shall see.

Thank you everyone for checking in on me and I hope you have a wonderful holiday season. I'll be back with updates after the new year when we have them.

My love to you all.