getting through

my little girl gets me through,
so I made her a monkey...

my beautiful wife gets me through, too,
what can I possibly do for her??

This is how we do...

For those of you who thought a cancer diagnosis, two surgeries and a gaping belly wound would get in my way or slow me down......

...you obviously haven't seen my anti-abdominal surgery STANDING sewing station.

thaaaaaaaaaaat's  riiiiight.

parental advisory: really really gross

Maya mentioned that one of the six zillion balls that we are juggling right now is the fact that the incision from the most recent surgery is starting to open up. its pretty superficial, there isn't any danger of my guts falling out... but it has to stay clean and dressed and it limits my movement and activity, if only mentally.

right now, here's my math equation:

more activity = more energy = more appetite = more healing

gotta have those things, and this open wound is getting in the way!

wanna see it?
don't say I didn't warn you ....

ARE YOU SURE??!?

gross. that's my belly.

some of the many things to look forward to over the next 6 months

When I start chemo mid-August, I will likely be taking a combo of two drugs (still to be decided).
After looking through the stack of information about each drug (poison, really, let's call it what it is...)
here are some of the things that I have to look forward to....

• the feeling of difficulty swallowing, shortness of breath, jaw spasm, abnormal tongue sensation and feeling of chest pressure (phew! good thing this is a rare side effect, less than 5%)
• peripheral neuropathy - numbness and tingling and cramping of the hands or feet often triggered by cold
• nausea and vomiting
• diarrhea
• mouth sores
• low blood counts (white and red)
• fatigue
• loss of appetite
• constipation 
• fever
• generalized pain 
• headache
• cough

That's from one drug.  Here are the side effects from the other:

• diarrhea
• nausea and possible occasional vomiting
• mouth sores
• poor appetite
• water eyes
• sensitivity to light
• taste changes, metallic taste in mouth
• discoloration along the vein through which the drug is administered
• low blood counts
• dry, cracking or peeling skin
• hair thinning
• nail changes (discoloration, loss of nails)
• rash, swelling, redness and/or pain in palms or soles of feet

with all that, I'm still convinced that I can handle this.

January is not so far away,

and despite what my wife may think, she is taking excellent care of me, and will continue to.

With a support network like I have, this will be, while not fun, at least manageable.

 

Chemo

So, my husband has cancer. Not the good kind of cancer…the bad kind. The kind that is so rare, there are no studies, guidelines or expert consensus. The kind oncologists treat based on “intuition”. For an oncologist to use the word “intuition”? Not reassuring.

Last week, after my husband posted he didn’t need chemo for all the world to see, I got frustrated. I was frustrated with him for writing that blog. For leading all those that care out there in the universe to believe that everything was okay, he was cancer free and on the road to recovery. This was misleading. Jeremy is an optimist. I’m a realist.

My interpretation of the oncologist visit was different than his.  I heard the oncologist say he didn’t know what to do, he had to consult. His initial response was to not necessarily do chemo but that was based on a stage 2 colon cancer. Jeremy doesn’t have colon cancer. He has stage 2 adenocarcinoma of the appendix, colonic type. He was going to consult and get back to us by Friday. He did.

On Friday we got a phone call from his assistant saying he’d like to make an appointment with us. He had consulted and decided that Jeremy needed chemotherapy. No details. Nothing else. You can imagine what the weekend was like as we waited for the appointment today (Monday). Full of anxiety, sadness, grief, loss of control, the unknown, etc. It wasn’t a relaxing weekend.

I’ve been feeling really isolated the last week. Jeremy was home from the hospital, he posted he didn’t need chemo and it seemed like all the sudden everyone thought, “Oh, he’s cancer free, no need for chemo. Everything is okay now.” Well, on my end, everything was not okay. I suddenly had a husband and a 3 year old to take care of. The roles around the house that we normally divide were not divided. Jeremy has been recovering from 2 major surgeries within 10 days of each other. He’s not able to do anything other than walking from the couch to the bathroom and back. Suddenly I became a caregiver and a single parent with a husband who has cancer. EVERYTHING IS NOT OKAY. And please stop asking me how I’m doing unless you actually want to know how I’m doing and then I’ll tell you how I’m doing which is NOT OKAY!

Not only were we waiting the weekend to go to the oncologist appointment, but meanwhile, Jeremy’s 10 inch incision was starting to dehisce. For those non-medical people out there it means open. Not good. It began to open more and more each day, not only open, but ooze fluid, fluid that smelled and looked smelly. His incision is not healing well. So, instead of one doctor’s appointment today, we had two. Now I get to be a wound care nurse and pack my husband’s open wound with a wet dressing twice a day. Not my idea of fun. Or his.

Then came the oncologist visit. Jeremy needs chemotherapy. The oncologist consulted with the local tumor board, an oncologist at MD Andersen and another oncologist that I was able to find at UCSD who specializes in rare appendix cancers. They all said he needs chemo. The reasons: 1) he’s young, 2) the tumor was poorly differentiated and aggressive (bad), 3) there might be cancer cells that we can’t see, 4) we want him to live, we want him to live, we want him to live.

This is what it’s going to look like. He needs another surgery to place a port in his central vein (surgery #3). This is where the chemo will go. The treatment will last for 6 months. He is going to have a regimen that is used for colon cancer because that is the only reference point anyone has to go by. Not comforting. In fact, every time the oncologist referenced colon cancer in the visit, I wanted to scream, “HE DOESN’T HAVE COLON CANCER, HE HAS APPENDIX CANCER!!!!” Which I actually did several times. The oncologist is a sweet man and seems to get it. It’s so frustrating to have no data to work off of. He is using the only reference point he has, which is colon cancer.

Every 2 weeks he will go in to the office, the first day they will infuse the treatment through his port. He will be there for about 5 hours. He will come home with a pump attached to his port which will infuse the rest of the chemo treatment for the next 2 days, then he has to go back in and have the pump removed. This process will happen over and over again for 6 months. It will make him tired, probably nauseated and he might lose his hair. Not what we envisioned our next six months looking like.

The oncologist doesn’t want to start treatment until Jeremy is healed from his surgeries. I agree. It doesn’t make any sense to beat someone when they’re already down. We have a family vacation to Aruba planned at the end of July. Hopefully by then Jeremy’s incision will have healed. The oncologist believes in the power of positive thinking and rejuvenation, he wants us to go on our vacation and refuel.

So, chemotherapy will likely start the second week of August.

I’m blown away by Jeremy’s attitude. He is positive, hopeful and has accepted this with such grace. He is a better person than me by yards. I know his attitude will carry him through the hard time to come. I can’t say I’ve ever had more respect for another human being than I do for my husband right now. I love him more than I could ever say.

This is all so fresh and I am still absorbing and assimilating the last 3 weeks. I’ve been going through such extremes of emotions; from anger to frustration to sadness to guilt to anxiety to fear. It’s quite amazing how things change in an instant. We now are living in a life with cancer, but not for long…

Cancer sure does put things into perspective. 

... and now: chemo

hang on to the roller coaster.
got a call from the oncologist office this morning.
they want us to come in on Monday to talk about doing chemo now.
that's it, no details.

someone must have been awfully convincing...

another picture

this one is for Isaac: happy summer dude!

NO CHEMO for now

so here's something that maybe we haven't really said before: I got the rare stuff.
my cancer is really super rare.
(I mean c'mon what would you have expected with me?)
apparently there are something like about 300 documented cases worldwide? don't quote me on that...

having something that is super rare seems cool, and it would be if this were a baseball card or a jazz record.

but rare cancers kinda suck.
nobody knows what to do with it. there are no studies, no trials, not even enough cases to make a good guess about.
cancer docs say  "oh yeah, appendix cancer: heard of it, never seen it." 

my doctor said he's seen maybe three, but he went to school on the east coast, studied at Yale, has just had more opportunity to see it than most...
he said he needs to talk to other people, he doesn't know enough about it. that's good.

the point of all this is
when we saw him today
he was very positive about clean scans and negative pathology reports and that most likely I'm clean.
and he thinks chemo isn't necessary.
likely we do more blood tests and scans, every three months, and unless something shows up, we just keep checking in. after a few years, we start to check in less.

if something shows up, then we have a plan: maybe more surgery, maybe chemo.

and maybe he'll talk to these other docs this week, and they'll give him some really convincing reasons why 'chemo: now' is a smarter plan.

but for now: NO CHEMO

every day

feeling better every day
getting stronger  every day
moving faster every day
sleeping better every day
less pain every day
eating more every day
moving forward every day
one day at a time

got my staples out today. good riddance!
they were very uncomfortable, snagged on clothing, poked and pinched... and now they're gone. when I get the dressing off, I'll get some pictures up.

have an oncology appt. in about an hour. we will begin the  "have chemo or not have chemo" conversation.

updates to come.

WARNING! potentially too much information

So about half an hour ago I made a poop!!!

now, nothing to write home about (or to the internets about, normally) but solid material actually made its way out of my shocked and damaged and truncated bowel!!!

so seriously! after chopping out about a foot, my guts are still able to pull it together and make it work.

LOOK OUT! CAN'T STOP ME NOW!!!

Guess where I am.

home.

what's next?

another decent night sleep (about 6 hours) and this morning I'm feeling rather good.  still lifted from yesterday's good news and the assurance that I am leaving the hospital today. yeah!

again I have to say a deep heartfelt thanks to all of you for the support! it has made a tremendous difference to know you are all out there sending energy to me and my family.

this next week as I settle in at home (there is still a long road of recovery ahead ) I will start to reply to all the emails and phonecalls.

nap.

WARNING! potentially disturbing image

I have gone back and forth about whether or not to post this image.  but I have decided that with all the rawness and honesty we (mostly Maya) have been portraying our emotions, then in all fairness, and for the sake of posterity, I will be upfront about the physical, too.

without further ado, my new belly:

.woah.

Fiona Cloud and her patented Laugh Therapy

"Papa? Do you want me to give you a laugh? It will make you feel better. Okay?"

It's negative.

I couldn't wait until next week for the pathology report. Jeremy's appointment with the oncologist is Tuesday. That's a lot of days to wait.

I called the office today and asked for results...with Jeremy's go ahead.

It was negative, there was no cancer found! They removed a foot of colon and 23 lymph nodes and no cancer!!! Did you get that? NO CANCER!!!!!!!!

NO CANCER!!!!!!!

I was in the car talking on the cell phone which is illegal in our state and almost drove off the road. I can't explain the outpour of emotions that came from me when I heard that.

This has been so scary for me. Dealing with the mortality of my husband is not something anyone should have to go through, especially when we have such a long life to live together.

Now there's hope...

And time for a nap.

what last night WAS and the night before WASN'T

a comparison :

Tuesday night
total sleep : one and a half hours
quality of sleep : light, interrupted, not restorative
pain levels : high
pain control : I could press the button releasing the pain meds every six minutes. but if I was sleeping,  I wasn't pressing the button. so if I slept an hour, then I was an hour behind on pain management and it would take an hour of watching the clock, every six minutes, to catch back up. this of course meant no sleeping...
overall feeling : sweaty, dirty, discouraged

Wednesday night
total sleep : about seven hours
quality of sleep : deep, almost uninterrupted,  restorative
pain levels : managed
pain control : I'm now on oral pain meds, a big dose every three hours, much more manageable because I can rest in between, a big difference!
overall feeling : better, BETTER

SOME MILESTONES FROM YESTERDAY
- got to take a shower,  it was awkward,  exhausting but ultimately really great, thanks nurse Maya! - got to get out of that awful hospital gown and put on some of my own clothes, phew! - got the dressing off my incision, woah. it's about ten inches long and has 21 staples in it. it looks very clean, and they tell me it's looking good. it was quite a shock to me. when they pulled the dressing off, I had to lay down, dizzy sweats... but I've grown accustomed to it, maybe a bit fond of it. it will definitely be a bad-ass scar... - I went for four walks yesterday, have now covered all the carpet on this floor. I will need to find the elevator if I hope to blaze new trails... that or I'm going to have to start running laps... - I've been upgraded from clear liquids to all liquids! ate some custard and yogurt yesterday. hopefully we will see some gut action today, really hoping for some toots! okay, nap time.

My side of the story.

As many of you know, writing a blog about my feelings and personal life is very uncharacteristic for me. I’m extremely private and introverted. Opening up to the world in this way is uncomfortable to say the least. 

There are two reasons I have chosen to express myself using this format. The first and most important reason is it was my husband’s request. He asked me to do it. At this point, he gets a free pass to ask for anything he wants and I will do it, no questions asked. 

The second reason is it is practical. Writing a blog speaks to my practical sensibilities. It is so much easier to put information in a central location for all those who care to read. It takes the pressure off of me. I don’t feel like I have to text, call and email everyone individually. Doing that is exhausting. 

My husband knows me better than anyone else. In retrospect, I think he asked me to do this blog because it would be an outlet to express my emotions and feelings instead of internalizing everything, which is what I do. I’m a big time internalizer/avoider. Thank god he’s not. 

I’m sure many of you have read Jeremy’s posts over the last couple days. He is determined to get better fast. He asked me to write a blog from my perspective. He said it was “important” and would make a “well-rounded” story. So here I go…

The day before surgery, Jeremy had to do a bowel prep. I took a sip of it, super gross. It tasted like sea water. Yuck. Jeremy had to drink 4 liters of it. Not sure how that is humanly possible, he couldn’t finish it, although he tried. 

For all of you who know Jeremy, he’s a pretty mellow guy, he doesn’t have depression or anxiety. The 4 nights leading up to surgery were different. Jeremy started to wake up in the middle of the night with out of control shaking, he was having panic attacks. The first night this happened, I didn’t know what to do. It was 2am, I was super groggy and my husband’s right arm was shaking uncontrollably and words were coming out of his mouth, but they weren’t making any sense. I was scared. After a few minutes I realized this must be anxiety. I had 2 pills of Ativan left over from my last airline flight and gave him half of one. Jeremy has never taken antianxiety medication before and I wasn’t sure how he would handle it. It helped for an hour or so, then the shaking returned. I gave him the other half. 

The next night he woke up with the shaking, he took a whole pill. This was at 3am. He slept. 

The next night he took a pill before he went to sleep, he slept…mostly.

Meanwhile, I was not sleeping. Not sleeping and getting up at 6am with our early riser daughter, taking care of her, taking care of my husband, arranging doctors appointments, etc. I was losing myself with exhaustion. 

These were the few days leading up to surgery. 

The morning of surgery, we checked in to the hospital at 7am. Neither of us had slept well the night before. They immediately called us back and had Jeremy strip into hospital gear. A lovely brown and army green checkered “gown” with snap sleeves and a full length slit in the back. We sat in the pre-op room for almost an hour before we saw anyone. Then 3 nurses showed up and it went from silence to ACTION; IV in, medical history taken, vital signs taken, assessment done, clothes in brown paper bag, etc. etc. Whoa. 

I asked one of the nurses if we were going to talk to the surgeon prior to surgery. I had a few questions. She said he doesn’t normally do that. I said, I’d like to talk to him. This is the same surgeon that did Jeremy’s last surgery, the same guy who gave us the initial diagnosis. The last time we had seen him was that visit when he told us Jeremy had cancer. Yes, I wanted to see him again before the surgery! Were we supposed to have absorbed any information from that visit? 

First, the anesthesiologist shows up. He pulls a chair up to the edge of the bed and begins to talk with us. He was really nice. He discussed the idea of doing an intrathecal injection of morphine into Jeremy’s spine on top of the general anesthesia. This would provide him with extended pain control, likely up to 18 hours. Seemed like a good idea. He generously answered all my questions and made us feel comfortable. 

Then, the surgeon comes in. He immediately has an attitude. 

Let’s jump back to the visit with him where he told us the appendix had cancer in it. During that conversation I asked him if he would be the right surgeon for us, did he feel comfortable with this type of procedure? I let him know that I would have a lot of questions and he needed to be just as comfortable with us and we were with him. I said directly to him that if he did not feel comfortable with me asking questions and spending time with us, then he wouldn’t be the right guy for us. He agreed to be present, to answer questions and to take the time we needed. 

Back to the morning of the surgery. I had questions, this isn’t a minor operation, they are removing a foot of my husband’s colon, they are looking for more cancer. I HAVE QUESTIONS!! As I began to ask him my questions, his demeanor was immediately put off. He smirked at me, he rolled his eyes, he acted like a condescending pompous asshole. Meanwhile, my anxiety was elevating. I was managing before he walked in the room and by the time I walked out I was in complete hysterics. The anesthesiologist witnessed this entire interaction and actually came running out into the hall after me and gave me a hug. He actually had empathy. 

I was by myself. Jeremy’s parents were going to come around 9 or 9:30 and my dad was going to come at 11 or so. Jeremy and I didn’t know that surgery was scheduled for 9am. So, I was by myself. 

I ran outside because I didn’t have any other place to be hysterical. I found a bench in a corner of a courtyard and called Karen, Jeremy’s mother. I could barely get the words out that they already took Jeremy back. Of course, then she got hysterical. They were on their way. Then I called my father (who flew in from CA to be moral support) and could barely get the words out. He was on his way. I sat on the bench for 15 minutes waiting for my father completely hysterical. You know the kind of guttural sobbing that happens with the deepest pain, the uncontrollable kind. When my father and Natalie showed up I ran into his arms and cried for I don’t know how long. I felt so out of control, so helpless, so scared. 

We went for a little walk, got some coffee, calmed down and went back to the family waiting area. Bob and Karen were there. We hugged/cried.

We waited. Again. This time was easier because I wasn’t alone. The surgery was scheduled for 2 hours. At 2 hours, they called me. The surgery was complete and the surgeon was ready to speak to us in the “consult room”. I felt a sense of relief that the surgery actually took the time they told me it would take. At the last surgery, it took 1 ½ hours longer. This was a good sign, right?

Bob, Karen, Dad and I waited in the consult room. The surgeon came in and told us the surgery went well. He had to make a larger incision because part of Jeremy’s colon was displaced as a result of scar tissue from his previous gallbladder surgery. The surgery was uncomplicated, he was able to look at his liver which looked fine. I chose not to confront the surgeon about what an asshole he was to me then. It wasn’t the right time. I plan on writing him a letter. And we will never use him again.

It took a long time for Jeremy to get out of recovery. He wakes up hard from anesthesia.

That first day after surgery was emotional. Jeremy told me how scared he was of not waking up, he wasn’t “done yet”, he has so much to do with his life. We cried together, we hugged, we couldn’t stop holding hands. We said I love you over and over again. We talked about Fiona. He wanted to see Fiona. He needed to hold her and talk to her. I called my mother and asked her to bring Fiona. It was healing.

Jeremy is such an amazing father. Fiona means the world to him. Her brightness, smiles and empathy made everything better. 

The next day or so Jeremy was on a high. I think he was just so happy to be alive, look at the sun out the window, listen to beautiful music, have the people he loves with him, he felt hopeful for the future. And still does. 

Then the intrathecal wore off and he went through 2 nights in the hospital with literally no sleep and the world wasn’t looking quite as rose-colored anymore. 

Today hasn’t been as good of a day. Jeremy is tired, he’s painful. Although no less determined to get better. I know to expect this now, there will be good and bad days. Good and bad hours. I think the trick now is to learn how to navigate the extremes. 

I said to Jeremy yesterday that we are in the beginning of this process. He said we are in the middle. We’ll see. There is so much unknown at this point. 

We are living from event to event. Jeremy got his appendix out and we were feeling better until the post-op appointment. Then we heard it was cancer and had to wait until the oncologist appointment. Then the oncologist appointment made us feel better, hopeful. Then we had to wait for the surgery. Then the surgery went well, uncomplicated, but now we have to wait for the pathology report…and so on. 

The unknown of all this is the hardest for me. 

We’ve been so overwhelmed with love, support and positive energy. Keep it coming please. 

post performance video review

Fiona Cloud had her first official performance today, on the conclusion of her DoJump class. the first of many, many, many.

I was just SICK to miss it; fortunately, Mama got it on video.

Here is my little Martha Graham showing her modern-dance-old man her moves.

once we get the video online I'll post the link because you have just GOT to see it!

visit from the music thanatologist

one of the things that has been so helpful in providing comfort here is to be able to stream music from my Google music account thru my tablet. fortunately I mentioned, this to Maya, and she paid attention.

so serendipity:
I was on my fifteenth snooze of the day, and Richard and Natalie stopped by. Maya met them at the door and took them on a walk so I could keep sleeping.

down a floor or two Maya spotted a woman dragging a harp and went running after her. this woman is a music thanatologist:

Main Entry: than·a·tol·o·gy
Pronunciation: \ˌtha-nə-ˈtä-lə-jē\
Function: noun
Etymology: Greek thanatos + English -logy
Date: circa 1842
: the description or study of the phenomena of death and of psychological mechanisms for coping with them

in other words, she plays music and sings to patients to ease them in there final times.  FORTUNATELY for me she believes very strongly in the HEALING, NURTURING AND RESTFUL properties of music... cause you know, my final times are literally  DECADES away.

Maya told this woman my story and how music was providing so much comfort to me and she agreed to come play for me.

I can't even begin to do justice to the experience.  she played slow, soft and with true glory. the sounds wove their way into my wounds and set to healing them. I drifted into the most peaceful sleep. it was a gift.

plodding along

things continue to move forward,
I've had another walk, much longer this time, am working with the pain fairly successfully
AND
I'm anxiously waiting for the
music therapist and her harp
that Maya was able to coax into a private performance!!!!!!!!!!!!!!!!!!!!!!!!!

some nice visits today, and a lot of supportive notes THANK YOU THEY DO HEAL

pain

before  my surgery I got a big old shot in my spine of painkiller, basically an epidural. it was radical.

and about 3:30 this morning, it went away.
so there's a big chunk of pain in my guts this morning. hard to take deep breathes. which, you know is kinda important. keeps away the pneumonia they tell me. among other things...

at first I could press the morphine button every ten minutes, but it wasn't touching it.

so they switched me to dilaudid every six minutes, which is better. I'm listening to that Mountain Goats song over and over.

so if you want to share in this morning's soundtrack, bust out The Sunset Tree, and mash play!  thanks, John

sleeping in the hospital stinks!

3:36am

sleeping in the hospital smells like an elephant foot
like an elephant who's been running around all day in the hot sun
like an elephant who's sweaty from running and just stepped in his own poop

that's how it stinks sleeping in the hospital

I mean can you believe it??!?

...seriously.

what a view

right out my window
healing light

more belly shots:

getting colorful!

i just went for a walk!

my man, Mike came in and offered to take me on a stroll. I jumped at the chance (well, maybe my eyebrows jumped a little).  I stood up, leaned on my wheelie-pole-of-bags, made it out the door and about 20 feet up the hall and back.  The guts hurt like everything, but it was AMAZING to be up and walking!  slow going, inch long steps, a little dizzy, the nausea hit when I sat back down, but a few minutes of sitting and a few ice cubes, and I was back in top form.  can't wait for my next walk! maybe when maya gets here...

I have my Sketchbook and some music playing, DOING FINE.

Oh, and let me tell you about the little crummy plastic cup of lemon sorbet.... NECTAR FROM OLYMPUS! A ROYAL TREAT FROM THE KING AND QUEEN OF HOLY-MACKERAL-LAND. CAN I GET A HALLELUJAH??!?

it was that good. 

fiona comes to visit and it makes me feel a bazillion times better

the best medicine in the world

Post surgery pictures

Out of surgery, sleepy, but feeling good.
Jeremy

out of surgery

Jeremy just got out of surgery. It went well, no complications. I will post more later.
Maya

yipes

it's starting to be a lot like Niagara falls around here...

can't say thank you enough

first, it is important to say that the outpouring of help and support has been both enormous and overwhelming. Maya and I can't tell you how much we appreciate it.

second, I thought I'd give you a glimpse of my day tomorrow (Sunday) before I head into surgery on Monday.

when I wake up I am restricted to clear liquids. ( does beer count?? ) everyone mentions jello like jello is the one consolation for being stuck on clear liquids. sort of like your tonsils and ice cream. yup, we're going to cut out a chunk of your throat and its gonna hurt like crazy for weeks but... you get to eat ice cream!  I'd love it if ice cream was a clear liquid. because I don't eat jello. you're welcome, cows.

I have a special antibacterial soap I have to use, smells stinky.

starting at noon I have to drink a gallon of golytely which will flush out every nook and cranny. will spend the rest of the day sitting down...

four pills of two different antibiotics at 3,6 and 9, then hopefully I will be able to sleep....

have to be at the hospital by 7on Monday after another antibacterial shower, and the start cutting shortly after 11. I imagine that I will be in recovery until after 3. Maya will update this site with any news. we won't have any results until our appt. the following Tuesday.

until then, I won't be very good about answering my phone, but I read every text and email and comment, sometimes more than twice.

Appendix cancer.

Appendix cancer. Yeah, I hadn’t heard of it either until 4 days ago. The organ that’s not an organ, a byproduct of evolution, can in fact cause harm, grow tumors and wreak havoc on a family in a matter of minutes. That’s what Jeremy’s appendix decided to do. 

It started with a little back pain over the weekend, probably a pulled muscle he thought. By the beginning of the week the pain was a little more constant and not in the back anymore, it was on the right side of the abdomen. By the second day of this right sided pain worsening, I thought it would be best to get checked out. For any of you medical people out there, you know you don’t mess with right lower quadrant abdominal pain. This is a red flag.

Jeremy had no other symptoms, he wasn’t ill. He didn’t have a fever, nausea, vomiting, anything that would indicate appendicitis (infection) other than the pain. 

That Tuesday I got an email from Jeremy at work telling me the pain was worsening. He doesn’t do that. I called the doctor’s office and made a same day appointment, then called Jeremy in his classroom and begged him to leave work. For those of you who know Jeremy, he doesn’t miss work, he doesn’t ever call in sick. He’s the most dedicated teacher I know. He agreed to leave work. Thank God!

We saw the nurse practitioner at the office. The puzzle pieces weren’t fitting together. Jeremy’s pain was in the area of the appendix, but he wasn’t acutely ill. It just didn’t make sense. They drew blood and everything was normal. If it was an infection of the appendix (appendicitis) he would have had an elevated white blood cell count or some kind of indication of an infection, but nothing. 

We couldn’t figure out what was going on, so the NP sent Jeremy to the hospital for a CT scan. After the test, the staff sent us home. Before we were even out of the parking garage, Jeremy got a phone call from the NP. Something was abnormal with his appendix. It was VERY enlarged, but there were no signs of acute inflammation. At this point, he told us to turn around and go back to the hospital, check in at the ER and Jeremy would likely need to have his appendix removed. 

After speaking to a very confused ER doctor and the surgeon (who happened to be the same guy who removed Jeremy’s gallbladder 3 years ago) the decision was made to admit Jeremy to the hospital and remove the appendix the next day. The doctors informed us of 3 possible scenarios; appendicitis (the most likely and most common), mucocele (a fluid filled cyst, benign), or a tumor (the least likely). 

The next day was Wednesday, we were taken to the surgery waiting area and told the surgery would be about 1 hour. I was given a pager and told to wait in the family waiting area. I waited and waited and waited until my anxiety was creating all sorts of worst case scenarios. It had been 2 hours and he was still in surgery. Something was wrong. 

Finally, when I thought I was going to pull my hair out and I had bugged the receptionist for the 5^th time, the surgery was done. I was told to wait in the family consultation room to speak to the surgeon. This also didn’t feel particularly normal. Why do I have to speak to the surgeon for a routine appendectomy in a private dimly lit room with a box of tissues?

By now I’m pacing. I’ve been pacing for at least 30 minutes. There is no way I’m going to sit calmly and wait for the surgeon to come and speak to me. I’m going crazy. What is happening to my husband? Don’t they know I’m a basket case? I need reassurance, not more waiting. 

After what feels like forever, the surgeon comes into the consultation room. We sit down, close the doors and he looks haggard. He starts to describe the surgery to me in detail. The appendix was larger than he had ever seen before. It was incredibly difficult to get out. He lost track of time. He had to remove a piece of bowel and peritoneum. The appendix ruptured in a plastic bag as he was removing it from the abdomen. He came “this close” to having to do an open abdominal incision (which would have instantly bought Jeremy a week stay in the hospital). As you may imagine, none of this was reassuring. 

Due to the complicated surgery, Jeremy had to stay overnight in the hospital. We wouldn’t find out results of pathology until the next week, at our post-operative appointment the following Tuesday. I had a really bad feeling. I kept asking why the presentation was so weird, why the puzzle pieces weren’t fitting together. I put it out of my mind because there is no possible way it could be cancer. Who gets cancer in their appendix? It was just appendicitis with a really weird presentation. 

We went home. Jeremy worked on healing, getting stronger. We went to our post-operative appointment the next Tuesday, thinking routine follow up. Fiona was with us. It wasn’t routine, it was cancer. Cancer? Cancer? A 37 year old man who doesn’t smoke, barely drinks, has a 3 year old daughter, no family history, no medical conditions, has cancer? He threw up. 

How do you integrate that kind of information? I quickly took Fiona out of the room. I asked the receptionist at the front desk to watch her for a couple minutes,  that we just got really bad news. I went back in the room. It didn’t feel like I was actually in my body, I couldn’t stop shaking, shaking, shaking. It was like I instantly developed Parkinson’s. Jeremy was white. The doctor was talking to us; Jeremy needed surgery, this was a cancer called adenocarcinoma, etc, etc. I’m not sure either of us actually heard what he was saying other than “cancer” and “more surgery”.

All the sudden, Jeremy became a cancer patient. In an instant. 

We scheduled the surgery, we went home, we cried, we called our family. I kept thinking, “are we just supposed to act normal now?” I didn’t know what to do, how to act. I can’t lose my husband. He is my life. He can’t have cancer. I’m the one who should have cancer. I’m the one who’s always stressed and worried and neurotic. Jeremy’s the one who is chill, relaxed, takes things one day at a time. 

A couple days go by. Neither of us know what to say, how to act, what the future holds. Luckily the surgeon printed out the pathology report for me and I started to read it over and over again. This was appendix cancer, it was graded a 3 due to the size of the tumor, the margins were clear, the appendix didn’t rupture in the abdominal cavity. 

I called my friend and asked her to be my brain. I couldn’t research because all I could see was “extremely rare”, “survival rate” and “prognosis”. I called the surgeon and asked him to order a full body PET scan. I made an appointment with an oncologist. We waited. Jeremy worked on the chicken coop. We went and saw a movie. We didn’t sleep.

Today was our appointment with the oncologist. Jeremy had his PET scan yesterday. It was clear. It didn’t show any metastases. That is the good news. The bad news is this type of cancer is extremely rare. The estimated incidence is 0.004% to 0.08%. No one really knows how to treat it, there are no guidelines, there is not even an expert consensus. There are 4 types of adenocarcinoma of the appendix. Jeremy has the colonic type. This is the more aggressive type of cancer. 

Jeremy is scheduled to have a right hemicolectomy on Monday June, 11. This involves removal of a large part of his colon and lymph nodes. Once the lymph nodes are examined we will know what stage cancer this is. If this is a stage 3 cancer (involving the lymph nodes) he will need to have 6 months of chemotherapy. If the lymph nodes are not involved, it will be stage 2 and we don’t know what the treatment will look like. 

At this point, we feel optimistic. The lack of metastases was good news. The surgery Jeremy is going to have on Monday is a big one. Open abdominal surgeries require lengthy hospital stays and recoveries. He’ll be in the hospital for about a week. We will find out the results of the surgery the following week. 

All prayers and good vibes accepted right now. (and jelly beans. - jeremy)

Post number one.

Two weeks ago, I had some funny pains in my side.
At first they came and went, then they just stayed.
Maya ordered me to the doctor.
The doctor ran some tests and eventually I was admitted to the ER.
Some surgeons decided my appendix needed to come out.
I spent two days in the hospital.  Everything went relatively smoothly.

But as it turns out, there was a big cancerous tumor in my appendix.