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.

28.

I'm 28 years old today.

If you had asked me when I was 6 what I would be doing when I was 28 I would have told you that I was married to Prince Charming and living in a palace. Caleb has considerably less hair than Charming but I think bald guys are hot so...point Caleb. 

If you had asked me when I was 16 what I would be doing when I was 28 I would have told you that I was a writer in Hollywood, living in the hills with a pool out back.

If you had asked me at 24, on the day that I got married, I would have told you that Caleb and I were traveling the world. No big. He owns the internet now and I take gorgeous photos. We just had our first kid and are headed to Florence for Christmas.

I would not have told you that in 4 years I would be on the tail end of my second surgery in under a year and soon headed into my third. I would not have told you that I've been poked and prodded and anesthetized so many times that it now feels like a regimen, akin to working out. I would not have told you that the business I've built over the last 4 years, the thing that I live and breathe, is on hold, if not dying a slow and painful death, because of my health. I would not have told you that we've stopped making plans to travel because we don't know what the next six months looks like. I would not have told you that kids are now in the far distant future.

The day we got married we were toasted with health and happiness. I spent a lot of time thinking about the happiness part. Where would we go, what would we do, who would we be? What would make us happy? I don't think the health part even crossed my mind. But then, why would a healthy person think about their health? And I'm not talking about going to the gym and eating well. We all think about those and probably will, more than usual, as the holidays pass. I'm talking about "get out of bed in the morning, nothing creaks or squeaks too much, your body takes care of itself" health.

These last few months have been hard. Really. Hard. And there are days that I curse and rant and cry and scream because this shouldn't be happening. It shouldn't. But it is. 

The problem with the list above is that it focuses on what I don't have. On what I don't have in my life at 28. 

Well I'll tell you what I have managed to acquire. 

I have a husband that is by my side, who makes me laugh constantly, who lets me press my cold feet on his warm legs, who snuggles me whenever I need him to, who holds me while I cry, who takes out the trash, who let's me blast my bad music, and whom I love viscerally and completely.

ure

And my family. Let me tell you, I know there are some great ones out there, but mine is the best. My dad's bear hugs could crush smaller women than me, my cousin sends me leaves from Minnesota because she knows the fall colors cheer me up, and my uncle emails me the loveliest notes with quotes about pumpkins that I read over and over again like a good book. One look from my brother gives me strength, one smile from Jess warms me like a cup of cocoa, and my mom rubs my back to calm my nerves while we sit in endless waiting rooms.

My friends could kick your friends asses. They mail me the new Taylor Swift CD to cheer me up, fly me to Seattle, meet me for coffee dates, and bring me fresh pressed juice. They send me notes and tokens and trinkets and texts that make me smile and let me know that no, I am not alone, and yes, I am loved.

I do not have a palace, or a home in the Hollywood hills, or kids on the way, or a trip to Italy planned in the near future. But despite the cancer, the surgeries, and the medical bills, I have a lot going for me. Like a lot. More than most. 

A lot of people ask how I'm doing, they ask if I'm ok. I smile and say I'm good. And then I get this sweet smile and these sad eyes that say "but are you really?" Yes. I am. Really. Good. I'm going through something. But who isn't? 

27 was not the most awesome year. It was rough. And there's really no guarantee that 28 will be any better. But I'm ok with that. I have what I need to make me happy. I have the happiness they all toasted us with. And I'm slowly working on the health.

to radiate or not to radiate... that was the question.

Jen here. I'm in Seattle for a little bit. I was supposed to come up for Halloween with Jess and the girls, but surgery got in the way of all the fun. Other than being super tired I am doing well and continuing to heal well. It's freezing up here. My blood has definitely thinned since living here.

I'm having a lot of fun with my nieces. They are incredible sweet and kind little girls and it's really awesome to spend some time with Chad and Jess.

The tumor board met Thursday night and Dr. Weismann called me Friday as soon as he finished his surgeries.

The board is recommending that I undergo another surgery instead of radiation. Dr. Weismann said that he wants to remove another large section of my tongue in a "uniform" manner as well as some lymph nodes. Last year we did a sentinel node biopsy to ensure that the cancerous cells were not spreading into my lymphatic system. This time he wants to remove and sample some lymph nodes that are closer to the surgical site as we know from PET scans that it's not moving into my neck or chest. 

The purpose of an additional surgery is to sample the tissue in a more targeted manner than we have been. If all of the tissue comes back clean, then they will put me on watch again through appointments and scans. If the there are cancerous cells then we will have a better idea of where it is coming from, what it is, and how to get rid of it. At that point we will re-evaluate radiation and other treatments.

The purpose of this surgery is to avoid having to put me through radiation. Dr. Weismann and the tumor board agree that it is a moderate approach to removing the cells if there are any left. As I've mentioned before, radiation would put me at risk for long term side effects such as severe harm to my mouth and the creation of a possible cancer 15-20 years down the line.

Dr. Weismann consulted with Dr. Dent this afternoon and Dr. Dent is supportive of this approach despite his recommendation for radiation after my surgery a couple weeks ago. Dr. Weismann will be performing the surgery this time around and will then monitor my case afterward. I do not have a time frame yet for when all of this will be happening again. Dr. Weismann said that he needs the site to heal before we can go back in. I don't know if "fully healed" means a couple weeks from now or a couple months from now. I will know more when I have my next appointment with him, which I will schedule on Monday

I have also called Dr. Koka to tell her the tumor board's recommendation and it is possible that she will be taking my case to her own tumor board. The more eyes on it, the better, because as all of the doctors keep saying, "this is a rare case we're dealing with".  

So, we continue to be in a bit of limbo and there continues to be more questions left unanswered, but we'll take it over radiation for the time being.

Much love to you all and thank you for your love and support through all of this. It means the world to us.

- Jen

an update. complete with pumpkins.

Hey Everyone. It's Jen this time.

First and foremost I would like to thank all of you for your love and support over the last few weeks. This recovery was much more difficult than last year because he removed quite a bit more tissue. I was on meds and a liquid diet longer than I expected to be and lost quite a bit of weight because of it.

I spent the majority of the first week in bed and then when I was feeling a bit better I moved out to the couch where I snuggled with Pippa.

I'm feeling a lot better. All of the stitches have been removed and I am fully off the pain medication. I am eating solid foods again and trying to build up my strength.

Currently we are in limbo in regards to my treatment. The last week or so has been full of various appointments with differing opinions and I'll try to break it down for you as best as I can.

I have three doctors working on my case at this point. Dr. Dent is the ENT that has been with me since day one and has performed both of my surgeries. He has asked me to seek referrals from Dr. Weismann who is an ENT oncologist at UCSD and Dr. Koka who is a radiation oncologist at Scripps Hospital. Dr. Dent ordered a PET scan (which I had last Saturday) so that the three of them would be able to make the best decision possible with all of the current pathology and imagery.

Dr. Dent told us to see Dr. Weismann first as he would most likely be taking the lead on my case at this point. We were unable to see him first, so we took an available appointment with Dr. Koka last Thursday.

We have seen Dr. Koka before (she consulted on my surgery and course of treatment last year). She is warm and soft spoken and I like her a lot. She said that at this point, due to the fact that the tumor returned in under a year, she would recommend a 6-7 week course of radiation and we would start as soon as possible. However, she was hesitant to go into the specifics of it all because the official pathology from surgery had not come back and I had not had my PET scan. She told me that I could expect the first three weeks to be relatively manageable and then things would get difficult from there. She mentioned the possible need to insert a feeding tube because eating would be very painful, to expect dramatic weight loss, and that I should expect quite a bit of damage to my mouth. She said she thinks she would radiate the surgical site itself and the right side of my neck. It would kill my right salivary gland and severely weaken my jaw bone. I have to admit, I started to get a little woozy when she said feeding tube and the rest of the appointment is a bit of a blur. Luckily I had Caleb and my mom in there with me asking questions that I couldn't think to ask.

On Saturday I went in for my PET scan. That's always fun. They inject you via IV with a radioactive material and then put you in a freezing cold room, lay you out on a leather recliner with a thin blanket, and tell you not to move for 40 minutes. Not only can you not be around other people (because you are radioactive), you can't read or listen to music as it stimulates your brain and will impair the results of the scan.

On Monday morning I went in to have the rest of my stitches removed and Dr. Dent told me that the PET scan was clean. From what they can see nothing has spread to any other part of my tongue, lymph nodes, or throat. The surgical site lit up because it is still inflamed and healing but nothing else did. I have never had something show up on a scan. That's how small this thing is. They aren't worried about what they can see at this point, they're worried about what they can't.  The clean PET scan didn't seem to sway Dent's recommendation for radiation.

We saw Dr. Weismann on Tuesday. Caleb, Mom, and Dad all drove down with me to the appointment and we waited for over an hour as the good doc was running a bit behind. These waiting rooms are torturous. They're full of crying family members, elderly folks walking around on canes, and plenty of beanies covering chemo hair loss. I definitely need to bring a book and some head phones next time. Once we finally saw Dr. Weismann, he took the same tact of hesitancy that Dr. Koka had in talking over specific details. He hadn't seen the pathology, the slides from surgery, or the PET scan. He had seen the clean results from the scan, but not the imagery of the scan itself. Luckily, we are in a great medical community and both the UCSD and Scripps systems have something called tumor boards.

Dr. Weismann told us in the appointment that he was going to request all of my medical records, the pathology reports, slides of tissue they removed, and all scans that I have had in the past and take it to the UCSD tumor board on Thursday the 13th. There he will consult with other oncologists, radiation specialists, and pathologists and decide what to do. However, in the appointment, he said that he would be very hesitant to radiate me. In his words "you're a 27 year old healthy woman with stage 1 cancer and I'm not sure how responsible it would be to subject you to the long term effects of radiation. If it were stage 4 or if you were 60 years old, we wouldn't be so concerned with the long term because it would be the short term that mattered". In case you don't know, the long term effects of radiation are possibly doing enough damage to the cells to cause another kind of tumor or cancer in 15-20 years.

Sooooooooo. We are waiting to hear what he recommends. We should know next Friday or Saturday and Dr. Dent and Dr. Koka will most likely take their lead from him.

We will update all of you next week. It is also possible that Dr. Koka will take my case to the Scripps tumor board the following week if the three of them feel like more eyes need to be on it.

Dr. Weismann said that he's only seen one case in the last 20 years where a tumor of this kind was found in the same location in someone so young and with no risk factors (such as smoking). He said that when they find this kind of tumor, it's usually progressed to stage 4. Thank goodness we found it so soon and we've got so many eyes on it. He also said the rarity of it would make the decisions going forward that much more difficult because they have so little to compare it to.

If they do recommend radiation next week, we will fill you all in on what that will look like for us. It's going to be rough, that we know.

 
 
 
 

The Sunday before surgery I asked the family to go out with me to Julian, CA. It's a small town about an hour east of us. We went pumpkin patching, stopped for some apple pie, and went to dinner. It was a really fun afternoon spent with the people I love most and it kept my mind off of the upcoming surgery. I cannot tell you how much all of them have helped me over the last few weeks. I wouldn't be able to get through this without them.

Contax 645. Portra 160.