HA HA! P.E.T. & ULTRASOUND

Testing Day!

Today I am radioactive! Perfect way to spend the Leap Year. I went for a PET scan, where I spend 30 minutes in a tube. I fell asleep while in there. Guess I was not too stressed about this, but it goes to show, it can be a very relaxing experience, as at a spa.

Also got an ultrasound and I had to FORCE myself to not laugh, because it tickles! I could NOT get the tech to join my ha ha’s, she had important work to do! These tests should clarify the stage and possible metastases (spreading).

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FACEBOOK UDPATES HOPE TO SAVE LIVES

Ok, I’ve done it –

Cancer updates will be now be added to my Facebook timeline. If one person gets a life-saving colon check-up because of my experience, then I’ve made a difference.

 

ANSWERS ARE HARD TO COME BY

2/28/12 Tue. AM

Diagnosis:

Confirmed adenocarcinoma located at junction of rectum & sigmoid. 

I received the diagnosis from the colonoscopy and CT scan yesterday afternoon from my doctor. Still there were missing parts. So, the CT scan will show a blurry version of possible additional locations of cancers, but then there were spots on my liver, which could be nothing or… something!! Until I get a PET scan and ultrasound, I will not know the extent of any metastases. So, darn, I hoped to have answers, but instead more questions came up.

Tests/treatment:

Prepping for PET scan and ultrasound. Should clarify some spots on liver – cysts or masses? I am carbs-only today, then fast for tomorrow. Appointment at 11:15am. Then I will be radioactive for 24 hours! I have to stay away from small children and pregnant people.

Today’s observations:

I still feel fine! Had to get a little creative, as I’m not familiar with a low-carb diet. Did fine, ended up digging into the sardines we inherited from our neighbors (thanks Bill & Lisa!). Matt has developed some strange digestive symptoms. It is difficult to tell if we should be alarmed, as he tends to internalize stress in his gut, but he has been horribly uncomfortable, and has symptoms similar to mine. His colonoscopy this Fri. will hopefully alleviate the worry.

He is endlessly amazed & baffled by my optimism, and tells me so many times a day. He is such a hero how he manages receptionists, insurance and examines the doctors!

Tonight we were to call my parents to discuss their visit this coming weekend. I called at dinner to let them know Matt was late, and they started asking questions that Matt & I hadn’t really discussed yet. I didn’t know what to tell them, but knew they needed to prepare for a long trip! Also, they were worried for their daughter, being so far away. So Matt came back, touched base with some neighbors, and then we called my parents.

In that time, Matt had my parents totally at ease, had presented them with social plans he had just arranged, and was joking and teasing, like he does.

It made my heart so proud to think that:

1) my parents can look forward to their trip,

2) they can be here with me while I’m going through my trials,

3) Matt is bonding with them.

TODAY’S A DIFFERENT DAY

2/27/12 Mon. AM

This morning as early as a 4am bathroom trip, I felt different. I noticed very clearly an ‘elevated’ feeling. I felt the energy of dozens (?) of people praying for and thinking of me since the diagnosis 3 days ago. I imagined myself wearing a loose, flowing wrap billowing in a breeze. Just the spirit form of my self. I felt my journey was to begin now.

Then, upon wake-up this morning, I imagined myself a soldier marching into gunfire. Suddenly I felt scared; an anxious unease in my gut. I started to cry, then I told myself to put it out of my mind. All my community, friends and family, looking out for me; Matt constantly covering me, holding me, feeling for me… I must head straight into my battle.

Today is different.

Today Matt and I will drive in to the GI follow-up where time will speed up, where I will choose to get my care in Portland or in LA. I will send an announcement to my list. I will research surgeon recommendations, medical facilities, insurance guides, and either start packing for Portland or not?

COLON TALK

2/26/12 Sun AM

This morning I set up an online profile on the American Cancer Society website, WhatNext.com, and my first post went like this:

“Whee! I’m on!

Yeah, ‘Oh no‘ is right. What the heck? Ask any of my friends or family and they’ll tell you they are just as surprised as I am about the cancer results. I am 38 years old, healthy as an ox, fabulous lifestyle with good diet, exercise habits and low stress. So, what gives?

All evidence points to genetics. I have a strong family lineage of colon cancer, colitis and IBS, which I am learning all about right now, unfortunately. I am not yet officially diagnosed, by the way, but the colonoscopy results were pretty telling.

It’s 4 days total until my official diagnostic results are available, so my fiancé and I have had lots of time to think and swap stories with others. There seems to be so little attention on colons, and that part of the digestive system; people just don’t talk about it! They are afraid of and embarrassed by their colon/rectal region. Societally, we don’t talk about gas, bowel movements, discomfort, sounds, smells, frequency, etc, etc, you get the idea. It’s all taboo! Why! If more people discussed this incredibly valuable part of our anatomy, wouldn’t there be more education and therefore prevention of cancer and other ailments? YES!

At the beginning of our relationship, my boyfriend (now fiancé) and I were discrete about our colonic behaviors, like everyone else. Over time we just became more accepting and open about our digestion, yet still respectful of each others’ space. If one of us farts, we just open the window and just say, “Good onya, Honey! Get it out!”. And really, better out of ya than in ya, right? This openness and self-observation lead me to eventually get my colonoscopy exam (a whole 15 years earlier than medical recommendation), which turned up a malignant cancerous mass.

Here is an excerpt from an Oregonian article illustrating what makes our society colorectally shy:

“You don’t hear nearly as much about colon cancer as you do about breast cancer or lung cancer or prostate cancer,” he says. “Why? It’s all about the poop. People don’t want to talk about their butts. Have you ever seen a brown ribbon campaign?”

– Jay Lake, cancer survivor, blogger and science fiction writer

“Unfortunately (colon cancer) is a huge source of cancer morbidity, and it gets frightfully little press and is sort of underfunded. I’m not sure why. Maybe because it deals with bowel issues the culture is reticent to discuss. I certainly agree with Jay that there’s not the degree of cultural support, advocacy and marches like you see with breast cancer or prostate cancer.”

– Dr. Kevin Billingsley, the chief of the division of surgical oncology at OHSU 

So there you have it. My advice? Don’t be so afraid or secretive! It only encourages other people to be so, then where are we? A society in denial of a real health problem. All of us have cancer naturally occuring, and our bodies are fighting it off successfully all the time. But when our bodies get overwhelmed, the system breaks down, and the cancer cells get out of control.

Most of us will experience cancer ourselves in our lifetime. Remember, the colon is a PART of our BODY, everybody has one (‘cept for those who had theirs extracted), everybody has problems now and then, but we don’t necessarily know what NORMAL activity is and what’s not normal. I didn’t know that my problems were not normal. I just lived with the discomfort thinking it would naturally pass, as a phase. The same story I heard from my brother and my cousin (who recently had his colon removed from ulcerative colitis infection).

What could I fear? After all, I am young and healthy!”

We think humor needs to be injected into the topic of colon health to encourage people to pay attention to theirs.

NOTIFYING KIN

2/25/12 Sat. am

Yesterday I spent the day talking with friends and family, by email and phone, discussing my thoughts and feelings, and the hard facts about my diagnosis of colon cancer. This will take a lot of time, I can tell. I sent an email out to a list of people who I felt should know. Of course there were a lot of people I missed, so had to keep resending the same message to individuals.

Immediately I got a lot of responses, a few phone calls, probably more messages will be on my cell. I talked to my parents separately in the morning. My parents must be feeling disconnected by the distance (Portland vs LA). What can they do? They took the news pretty well. Matt has been the spokesperson because he greatly skilled at and accustomed to explaining very detailed topics and recalling technical info. He & I presented the news in a way that my parents would feel comfortable that we were handling the next steps as well as possible. Understandably concerned and with a lot of questions, they would have a lot of thinking to do.

All other responses came back eager to help out any way they could, were very surprised by the diagnosis and shared much compassion. That’s where my energy was most spent, and I felt it important to connect with my community to provide reassurance. Matt spent a great deal of time researching all he could find about my diagnosis and the medical system. This is one of his great strengths, as well as a form of coping for him.

By the end of the day, Matt & I were exhausted, emotionally drained. Looking ahead to 2 more days of anticipating the follow-up GI appointment, could time go any slower?

THE BIG ‘C’

2/24/12 Friday PM

The colonoscopy turned up cancer, very definitively, no question. Dr. Lai said that two years ago it would have been a polyp, and he would have removed it then. But now it’s full-blown, and it’s compressing the space in my colon, sapping my nutrients. It could have been growing since before then. No symptoms until recently, no warning.  It is a 5 cm mass in the sigmoid colon. There is also a neighboring 1 cm polyp which was removed for biopsy.  I could see colored pictures of the mass just below my name on the report, just minutes after the procedure.

Dr. Lai sent me across the street right away to get a CT scan of my whole abdomen. This test will show generally if there were other occurrences of cancer. The results of the scan, blood & stool diagnostics will be explained during a follow-up appointment with Dr. Lai this coming Monday afternoon (3 more days away!).

I’m having trouble making reality out of this. I’m too young, too healthy! And I don’t feel sick!

When I finished the scan, I found Matt outside the office on the sidewalk talking on the phone. He was talking to his daughter Chloe. She lives close by, and suggested a visit from us. I said, of course, as I was feeling fine after all the exams.

Chloe was very reassuring that I would come through any treatment fine, and I would return to a healthy life. Matt is confident, too. He had already left a message with Chloe’s mom, Olivia, who was asleep on the other side of the world (OZ).

We returned home and Olivia called immediately when she got the message, and offered assistance: finding doctors, sharing info, emotional support, etc. Olivia had survived breast cancer in ‘93/’94, and has since thrived on building foundations, support resources and a hospital/retreat for cancer patients called ‘Gaia’ (located in Australia) for patients all over the world. Amazing woman! So, I feel honored to personally have Olivia’s support. Very sweet!!! She advised me that hard times would come, breakdowns, etc, and just go with them. Just let fly and feel the emotions. “Oh yes,” I’m thinking, “I know already, I’m in for a ride…”

I hate that Matt has to go through this again after going through it years ago with Olivia. I know he will be far better equipped now than during Olivia’s ordeal. Matt is devoted to my emotional needs and to making me better, whatever it takes.

I also hate that my cousin Aaron, ulcerative colitis sufferer, is worrying for my health after going through his colon removal trauma.

I also hate that my mom and dad are in Portland, 1000 miles away, worrying.

Oh, what does this mean? Why me? Why now? What caused it to start? What could I have done differently? No answers for me, I know. I can’t complain. There are so many other people going through the same thing as me and worse. So, it is what it is!

Incidentally, the colonoscopy and initial diagnosis were the same day that 2 years ago Matt went in for his planned hip reconstruction surgery. Feb. 23rd, an auspicious day, no?

PREP DAY

2/22/12 Weds pm

The colonoscopy is scheduled for early tomorrow. Early this morning I got a fear that the problems I’m having will fix themselves, that my system got overwhelmed when I changed to mostly vegetarian diet. Then it reacted by flaring up, and hasn’t gotten a chance to settle down. I thought, what if just this fasting in prop for the colonoscopy will put my system back in gear. I worried, then we’ll have spent thousands of dollars on a procedure I don’t need. That’s my early-morning mind at work. Matt reassured me, when I told him my thoughts, that we’ll know for sure after the exam. Sigh, ok. Still, I feel optimistic about my health.

Today has been a slog, quite honestly. I was tired already when I woke up because of my midnight stool specimen ordeal – I hope that will be the last! All day I felt low-energy, tired and blah. I had decided not to make a bunch of teas, and forget about black coffee (ew). Matt was gone, so I worked, thankful to be solitary because I am tired, hungry, and impatient, but lonely!

I called the Dr’s office to ask if my TJ’s chicken broth would be ok to eat, and they said, ‘Oh yeah. That’ll be fine”.  I said “YES! I get dinner!”

BM’s came out like sludge, and blessedly waited until late afternoon to come.

Tomorrow is a 5:00am enema, which scares me!

So here we go!

Standing Ready for Diagnosis

Standing Ready for Diagnosis

Ok, February 28 I began posting cancer updates to my Facebook timeline. If one person gets a life-saving colon check-up because of my experience, then I’ve made a difference.

You Are The Wind Beneath My Blanket

How romantic. Thank you, Darling! – Michelle

Matt was rife with clever prose this morning. Uniquely inspired, I guess, considering I’ve developed a mysterious intestinal condition which causes horrible gas leaks. The good thing is that as a couple, when you talk about embarrassing bodily events, they become just what they are, normal. 

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