Day 22: Welcome to the Club

As a child, we had many neighborhood clubs and they seemed to change as quickly as our interests. Some of the clubs were actual organizations – Boy Scouts, Girl Scouts or church clubs, but most were made up affiliations of a group of early elementary school imaginations.

I met a young cancer survivor a few years after my treatment and he handed me a card. On one side it said the word cancer and on the back it said, “Welcome to the Club”.  A cancer diagnosis stinks, to put it politely, but the fact that someone created a “cancer club” card was quite comical.

Being diagnosed with stage III colorectal cancer at a young age gave me immediate access to clubs that I never wanted to join or even new existed. The infertility club was the most heart wrenching. I had plenty of friends that were already in that club, but I could never truly empathize until I lost my own fertility. Then there was the ostomy club. This one isn’t as bad for me, but in a few different support groups I have learned there truly are people out there who are basically disgusted that they have to live with an ostomy. This list of clubs could go on and on – the neuropathy club, the fatigue club, the chronic pain club, etc. While most of these are not real clubs, the affiliation is genuine.

The best groups that I have come to join or participate in are non-profit advocacy groups that work hard to raise awareness by publicly sharing stories of young adults diagnosed with colorectal cancers. They collaborate to increase awareness, funding, research and access to screenings.

Through all of these affiliations, I have realized that the phrase “everybody has something” is a very true statement. Not everyone has or had cancer and not everyone has life long side effect, but everyone has something.

I know people who have lost a spouse, a child or a parent. I know people living with debilitating diseases. I know people who have lost the ability to walk, talk, see and hear. I know people who struggle with anxiety and depression  I know people that are financially strapped and have children who are living with chronic illnesses. I know students who are struggling socially and academically. I know adult and child bullies and those they choose to target. I know people who have committed suicide and those they have left behind.

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My devotional this morning was less about colorectal cancer awareness and more about life’s challenges. It was a positive spin on the mountains many of us face each day.

For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high upon a rock.
Psalm 27:5, NIV

Another devotional ended with a well said prayer, “Heavenly Father, thank You for the hope I have knowing You take my messy life and make it beautiful. Give me the patience I need to wait on You and eyes to see the masterpiece taking shape.”

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Day 21: Fatigue

Fatigue can be one of the signs of colorectal cancer. I was exhausted before I was diagnosed, but who wouldn’t be with three children under the age of six! If you know our youngest, you might just be exhausted by association.

Going through treatment, my oncology and surgical teams constantly asked me about fatigue. For the most part, I would say I had good days and bad days. I pushed through the fatigue until I was flat-on-my-face exhausted.  Fatigue hit the hardest after I had completed my treatments. Twice waiting in the allergist’s office for my daughter, I was mortified when I realized that the shaking I felt was my then 2nd grader pulling on my arm because I had fallen asleep sitting in the waiting room chair. I fell asleep waiting for my daughter’s gymnastics class to be over and in the car waiting for piano lessons to end. It seemed anytime I had to wait or sit still for more than 10 minutes, I was in danger of falling asleep!

When I brought this to the attention of my doctor’s, it was explained that while I thought I felt good, my body was working hard to repair itself on the inside and that was taking a lot of my energy. I also learned that chronic pain increases fatigue. After treatment I had chronic pain in my rear end, lower back, hip joints and pelvic floor. The more painful the day – the more tired I became. No one thinks about this stuff in their early 30’s!

Atrophy also causes fatigue. I was pretty much a morsel of the person I was prior to treatment. Trying to keep up with my life prior to a cancer diagnosis with the muscle mass of an elderly person was exhausting!

Anyone who has dealt with a chronic condition probably understands fatigue. I had no idea what true fatigue was and really probably denied that I was even experiencing fatigue until I started to find myself falling asleep in public! Fatigue is not just being tired or needing some rest. Fatigue is waking up tired and just hoping to make it through the day. Fatigue is looking forward to going to bed, but it’s only mid afternoon.

Public Service Announcement: Fatigue is not normal. Talk to your doctor.ColonCancerInfographichttps://www.unitypoint.org/livewell/article.aspx?id=a480319f-40e0-4e9d-b55c-bb896de04879

Day 19: Lighten the Mood

This week has been quite a downer…too many friends have been affected by cancer – death, surgery, treatment, tumor growth and/or new diagnosis. Before I even began treatment, a friend of mine called to remind me of Mathew 11:28.

Come to me, all who are weary and burdened, and I will give you rest. Today, I started my day off praying for friends and having faith that all will be well in God’s hands. From the broken-hearted to the physical challenges, God will heal and lead the way.

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And now, I interrupt your regularly scheduled blog for a good dose of humor. Life before irrigation was very unpredictable! I really had no control over when, where or how fast my colon decided to empty. I have had explosive episodes in a Walmart bathroom with a three-year-old working hard to hand me baby wipes to clean up my own mess. Once in the card isle of Target, Chris looked in alarm and said – “Hey, babe? There’s something on your shirt and you may have a leak going on.” It wasn’t a leak. The seal had pulled away from my skin and it was more like a break in the dam. That little opening left me running to the car to get out sight from the public, as the dam let loose down the front of my pant leg.

But I think my husband’s own story takes the cake! We were on vacation and I needed to change the bag before we headed into the Lego store with two very young Lego enthusiasts. Before we headed into the Lego store, we quickly grabbed trash from the car. I placed the opaque bag on the pile of snack wrappers and fast-food trash to be thrown away. Almost as fast as I put in on the pile, Chris took it off the pile. I thought maybe he just needed two hands to throw away the trash.

A few hours later we returned to the car with a small fortune of Lego’s and three exhausted children. With all children buckled and snapped into car seats, Chris emptied his pockets on to the driver seat before getting in. My eyes went directly to the opaque bag and my voice came out like a shriek! Why do you have that bag?! He said – “I thought it was your bag”. Shrieking and laughing I tried to say, “Yes. It is my bag. My bag of poop that needed to go in the trash!”. His eyes were huge and I immediately started laughing hysterically. Not really laughing at him, but at the fact that he took the bag off the trash pile, because he thought it was a spare bag that I may have needed. I had no idea that he put that bag in his pocket. We were in the Lego store, the food court and I’m sure at least five other stores and he was carrying a bag of poop in his pocket! I couldn’t even look at him without crying in laughter. For the rest of the day, I would randomly break out in laughter and think…he carried my poop!

Ok – back to the originally scheduled colorectal cancer awareness blog. Colorectal cancer is on the rise in young adults. While this is nothing to laugh at, life after cancer is not always easy, but it can be quite comical too!

Day 18: Port from Hell

l.gxOKgqMvRiXNwdkbMy first round of chemo was an oral medication. I called it my poison pills, but really it was much easier to tolerate than the second round. When it was discovered that my lymph nodes were involved, I need a much more intense round of chemotherapy and I had to have port implanted. A port is like a tiny silicone balloon attached to a central IV line. The balloon is placed just under the skin and the IV is threaded up over the collarbone and into the right jugular vein in the chest.

By the time my port was placed, I was so thin you could see both the port and the IV line in my chest. Placement wasn’t awful, but the more the port was accessed the more tender that part of my chest became. Probably halfway through treatment, I started getting physically sick the day before “treatment days” and then I started getting nauseous 30 minutes before we would get to the hospital. Anticipatory nausea – I was getting sick, because I knew I was going to get sick.

Once the port was accessed, the chemo (and a cocktail of other medications) were given directly into that central line. I would then leave the hospital with a fanny-pack of poison pouring into my chest for the next 48 hours. I just tucked the fanny pack into a Vera Bradley cross body purse and it was rarely noticed by anyone. There were the few occasions that the alarm went off in public and people would turn and stare, as I dug through the purse, undid the Velcro and hit every button possible trying to shut down the alarm. Once in a pharmacy, I thought there was a slight chance that I may get a “pat down” from the confused clerk.

After completing chemo, I had to leave the port in for a few more months. My doctor wanted it in for a year, but I begged for it to be removed. Life with a toddler and a port was too painful.

Removal of the port is supposed to be super easy (keep in mind I am that small print patient, so I should have expected something different). It’s considered so minor that they are able to remove it with just a local numbing injection.

There was nothing normal about my port removal. That scar tissue that had developed in my abdomen had also encased my port and the IV line. The doctor kept telling me that we were almost done. He would give me another shot of the numbing medicine and continue cutting. There was cutting and pulling, pushing and cutting. He was getting frustrated and I was getting sick to my stomach. The procedure should have taken 20 minutes. After an hour and a half, the port was finally out. As he lowered the table, I jumped off of it covered in blood and told him to stay away from me. I was too light headed to stand and quickly had to lean on the table. I grabbed my clothes and started getting dressed. The nausea had turned into anger and I wouldn’t let him near me. The nurse came in and cleaned off as much blood as she could, as I fought her to get dressed. I started to walk/wobble out of the room, but thankfully she plopped me in a wheelchair before I fainted.

In the recovery hallway, my mom was pacing back and forth. When she saw me – her face instantly changed from worried mother to angry mama bear and there was a disapproving heated exchange of words.

At my oncology follow-up, I explained the horror of the procedure to my doctor. He examined my scar and explained that I had developed a keloid around the port and I should have been put under for the procedure. I had never seen my oncologist even slightly upset, let alone mad. He was furious, but not wanting to get me upset he jokingly asked if the surgeon was wearing the robe and cross commonly associated with the Spanish Inquisition.

When you hear the word cancer your body goes into fight mode and your brain follows. You don’t have time to think about long term side effects or small print possibilities. In that moment you don’t care. You just want the cancer gone. My port scar isn’t so visible anymore, but it’s still quite painful. It’s just another scar to remind me how far I have come.

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Day 17: Happy St. Patrick’s Day

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Photo Description: Me wearing a St. Patrick’s day shirt that says “Craic Dealer” and lifting it to show my colostomy bag with a picture of a leprechaun printed on the bag. 

This is a post that I repeat every St. Patrick’s Day. Maybe when I get around to finding a new picture for my colostomy bag, I’ll change the post. Until then, it is still ever so fitting.

This photo was taken in March 2010 – halfway through my last six months of chemo. For any of my non-Irish friends, Craic is a Gaelic word and the best English translation is – fun, good times or entertaining. I blogged about my experience from the very beginning, so everyone had real-time information and updates. That was my first experience with being an advocate and spreading awareness. I had always hoped that if I shared my story enough, someone would recognize their symptoms and get diagnosed early. If caught in the early stages, colorectal cancer is preventable, treatable, beatable, and most certainly curable.

This is one of my favorite pictures. Yes – chemo was hard. Yes – learning to live with a colostomy bag was new. Yes – radiation had taken its toll on my body. Yes – I was beginning to understand that some of these side effects were never going away. But seriously – what leprechaun would not find humor in a colostomy bag!

Being diagnosed at 32 was so odd. A 32-year old mother diagnosed with stage III colorectal cancer? So odd that the newspaper was interested in my story and I was interviewed by our local television station. The only other people my age with this diagnosis I met online and finally face-to-face at my first advocacy event.

I initially shared my story hoping to prevent at least one person from going through the same experience. Now, I share my story with even more passion, because I know that colorectal cancer is no longer an “old man’s” disease and younger and younger people are at a higher risk of colon and rectal cancers than ever before. Our children will be screened at 22 for colorectal cancer because of my history. I feel like singing the Schoolhouse Rock song – knowledge is power!

b39aefb26b090e40dda7098f5d6479a5 https://www.youtube.com/watch?v=SjNM4eItNRA

Day 16: Bomb in a bag

I have often described the rectum as the 5-inch deodorizer of the colon. Once that little section is removed, there is no comparison to the odor that comes out through an ostomy. I guess I can be thankful that I live in a house dominated by toilet humor!

The first time I emptied my colostomy in the hospital I asked the nurse if it would always smell so awful. She laughed a little, but didn’t really answer me. That may have been one of the top reasons that I have such a high regard for my wound care nurses (WOCN). One look at my stoma and my WOCN said – Oh! It’s so cute! They are like the output cheerleaders. While I was shocked at the stench coming out of the bag, she was there to swoop in with uplifting ostomy spirit! I think it takes a very special person to be an WOCN. If they have a negative attitude, it could easily impact the person with the new ostomy. These nurses must be screened pretty thoroughly, because I have yet to meet a WOCN that I didn’t like.

I don’t think I ever got over the shock of the smell, but maybe just a little less sensitive to it. Knowing that I can tolerate the smell, I tease that it would be hilarious to “burp the bag” (open it slightly to let out the gas) in a full elevator. I imagine I would be the only person walking out of the elevator that day with a trail of innocent passengers clinging to the walls and gasping for air as they crawled to the exit. Yep – I’ve thought about that a little too much. Oh! It would just be hilarious!

The smell of an ostomy bag is just unmistakable. It’s like a small bomb in a bag. It’s like going to get your toddler out of bed, but the smell of a sour diaper warns you that there is a blow-out waiting within those cute zip up pajamas – another smell that is unmistakable.

This morning I came downstairs, walked into the kitchen, poured my coffee, set the cup on the table and walked into the bathroom. Same morning routine as every other day, but with one foot in the door I knew there was a problem. I was greeted by the faint smell of an open colostomy bag. (A little ostomy knowledge here – when I have to change a colostomy bag, they get discarded in an opaque plastic bag. I think it’s to be discreet in public. People might be totally disgusted to see a transparent bag of poop sitting on the top of the garbage can in a public restroom.) Side note…dogs love ostomy bags and we have three dogs.

Like a police dog on a scent trail, I just followed the stench. Bathroom cabinet door open – that’s a problem. Trashcan turned over – bigger problem. No bag in sight – sirens are now going off in my head. The stench only starts in the bathroom. I turned around and followed the still lingering odor. The dogs ran for cover as I entered the living room. Living room?! NOOOOOO!!! In my head, it was like yelling NO into a mountainous valley with the echo repeating and repeating. NO! NO! NO!

Thankfully, I must have caught the guilty party within just a few seconds of the trashcan robbery. No huge mess. Just a Clorox wipe to be sure. No carpet scrubbing. No ostomy trash taken from one room to the next. Just a bag with a tiny chewed through opening.

Life with an ostomy is never dull! As a twenty-something dreaming of my future, cleaning up an ostomy mess at 5:00 a.m. never entered the picture!

Day 15: Life Rerouting

Being diagnosed with stage III colorectal cancer at age 32, seemed unheard of. That was almost eight years ago, and at that time my local doctor had only had one other patient under the age of 50. There are multiple studies available that support the fact that colorectal cancer is on the rise in young adults, and it is encouraging to see that an article from the Dana-Farber Cancer Institute understands that a diagnosis at a younger age brings less traditional challenges that require medical teams to take more a multidisciplinary approach. http://blog.dana-farber.org/insight/2017/03/colon-cancer-on-the-rise-in-young-adults/

At 32, I thought fighting cancer would be like a hiccup in my life plan. Like making a wrong turn down a cul-de-sac, after rerouting it just takes a little longer to get from point A to point B. Being diagnosed with stage III colorectal cancer is not like making a wrong turn, it changes your route completely and you are faced with challenges and life-long complications that you never anticipated.

After seven hospital stays in six years, my surgeon decided that I needed to have scar tissue removed from my abdomen. As I mentioned in a recent post, I have now had three different surgeries to remove this scar tissue. The last two surgeries were open abdomen. My surgeon opened my original scar – from just above my pubic bone to just above my (now non-existent) bellybutton. Recovery was rough physically and emotionally, but apparently my colon has taken this last surgery as a persona affront.

The post surgery diet is the soft-food diet. Basically if you can cut it with a plastic fork, it’s on the soft food diet. Yuck! Beginning in late January, my surgeon wanted me to increase the type of food that I eat and get off the soft food diet, but my colon is rebelling. My colon prefers smoothies, soups and carbs. Throughout the day I live on the soft food diet and then at dinner I can try other foods knowing that I will be at home should my colon choose to rebel loudly or boycott with pain.

Colorectal cancer at 32 is not a hiccup in life. This is life. For a few patients, their cancer is caught early and life goes on. For those of us that had radiation, chemotherapy and surgery after surgery, life goes on as well, but it’s just a new life. A new normal.

Last night, our youngest was playing in the bathtub and he poured a pile of conditioner into his bellybutton. With pure excitement he said, “Look! I have a stoma. Too bad you don’t have red shampoo”. New normal. My daughter and I were at the mall over the weekend, and I felt the rumble of pain go through my belly. I just looked at her and we walked quickly to the nearest restroom. While I changed the bag (which I rarely have to do in public), she casually prepared wet paper towels for me. New normal.

This summer I have to schedule a round of check-ups that are comparable to someone in assistive living. Life at 40? No. New normal.

People often say to me – you never complain.  I’m sure I do, but in reality what is there to complain about. Life is complicated. Things happen. You get retouted and sometimes you end up in a cul-de-sac.

Day 14: Marching through the Storm

As this winter storm descends all across the eastern half of the country, people who I consider friends and some who are as close as family are preparing to take their place on Capitol Hill this week. They will walk in the snow from building to building, telling the lawmakers of Congress their personal stories – triumphs and losses –  to increase support for colorectal cancer research and to remove the loopholes that prevent early screenings.

882560_4500638634815_1092248043_oFour years ago, Chris and I took our daughter and joined Fight Colorectal Cancer for Call on Congress. For my husband and me, it was a chance to share my story with the lawmakers of Ohio and make it personal for them. For our daughter, it was a chance to meet many other children who had similar stories – a parent diagnosed too young.

Work obligations and hospital stays have prevented us from rejoining our friends on the Hill recently, but one day we will be able to return again. Until then, we support this cause and our friends – bringing awareness to the lawmakers who can choose to positively impact colorectal cancer research and access to screenings to prevent this awful disease.

Today, I ask for your help. Please take a minute of your time to sign this petition. It’s a little late for your name to be added to the petition that will fall on the desk of our lawmakers on Wednesday, but it will be added and that petition will be used throughout the year. We want more funding to raise awareness and we need Congress to remove those insurance loopholes that prevent early screenings.

http://action.fightcrc.org/p/dia/action3/common/public/?action_KEY=20770

 

Day 12: 80’s hair band

When my oncologist said “chemo,” I immediately thought of a bald head, and he explained that not all chemo makes your hair fall out. There are actually only a small percent of people that experienced loss of hair with the chemo that I was assigned. I did, however, talk to our kids ahead of time about hair loss. I wanted our kids to be well informed throughout my treatment and I wanted them to hear the correct information from us, their parents, not kids on the bus and not kids on the playground.

When I told our daughter that there was a possibility that my hair would fall out, with her first grade wisdom she informed me that it would be alright because we have already have that blue wig for dress up and I could just wear that one. So, that was my promise to her. If my hair were to fall out, I would wear the blue wig.

Week after week, I still had my hair. Then there was surgery, complications, surgery and a long hospital stay, but I still had my hair. Shortly after beginning my second 6 months of chemo, my hair began to change. It wasn’t falling out. It was breaking off – just about 2 inches from my scalp my hair was literally snapping off. I would blow dry my hair and just watch it fly away. I felt like I was covered in lose hair all the time. I would find it in my shirt, my sleeve and on my pillow. I clogged the shower drain like it was my daily job!

I thought getting a cute bob would eliminate the “hair, hair everywhere” effect. Wrong! With a short hair cut, I couldn’t pull my hair back into a ponytail or messy bun, so all those 2 inch strands just stuck straight up like I had been electrocuted or like I had my hand on one of those static electricity balls at the science museum.

When I brought my hair issue too my oncologist he explained that it was a combination of the body’s response to trauma (chemo, surgery) and malnutrition. Yes, malnutrition! I couldn’t eat much during treatment and in the hospital I was put on TPN – total parenteral nutrition. TPN is concentrated nutrition received through IV when the GI tract is non-functional.

It’s funny. I really hadn’t thought about that hair issue, until just recently when someone asked me when did I get bangs. Bangs? I don’t have bangs? A scrutinizing look in the mirror revealed that I did in fact have bangs and that all too familiar halo of broken hair. What the heck?

I often say that I have short term memory loss (chemo brain really never truly goes away)…which is very true, but I guess my long term memory is quite intact. One look in the mirror and it was as if I was sitting in my oncologist office listening to him describe the effects of malnutrition on the body. Damn it!

My most recent surgery was much more complicated than anyone anticipated and I quickly developed an ileus. An ileus is basically when the bowels stop functioning – no gas sounds and no movement. An ileus is treated with an NG tube (check) and IV fluids (check). After surgery the patient (me) is NPO – nil per os – Latin for nothing by mouth. I’m assuming you can guess where this is going. Nothing by mouth – no food. No food – malnutrition. Hello TPN!

After a few weeks at home, I noticed my hair felt a little different and the drain was starting to clog, but I didn’t think anything about it until the bangs conversation. Damn it!

80'S HAIRMy hair is starting to grow back in, so I have an awesome 2-inch halo of thick hair. Yesterday after blow drying my hair, I realized that I could easily fit in with an 80’s hair band or possibly Wayne’s World. As I came out of the bathroom this morning, our youngest said, “What wrong with your hair?”

Day 11: Husband Extraordinaire

I tease my husband that we are Team Wills – us against the children. We are in fact outnumbered here. Being the stay-at-home mom, I did everything kid related, and I was the parent that they ran to when they needed something. When I was diagnosed, he became the caretaker for me and the run-to-parent for them. As I recovered, I slowly took my place again on Team Wills. But somewhere over the last two years, my health has had to become the priority because of bowel obstructions. Between hospital stays and doctor’s appointments, I became the second-string parent. I just couldn’t keep up with schedules, practices, homework, housework and work-work.

A final surgery in December moved this team player from second string to the bench. The fatigue that comes with recovery is overwhelming. You want to participate in life, but your body just cannot. This Christmas I sat on the couch crying quietly to my husband because I wanted to be as excited as the kids. I wanted to be holding the camera with giggles waiting to explode as they opened their gifts, but I could barely hold my coffee cup without tiring.

While I am now post recovery, back to work and definitely have more energy, I am notorious for overdoing everything. I don’t think of myself as weak, but my body is nowhere near as strong as it was before my surgery and there are days that I am ready for bed before our 9-year-old. A few days ago, I was halfway up the stairs when I seriously questioned my legs ability to finish the climb and make it to bed. As I walked passed our son’s bedroom, I heard the familiar…Mom? The familiar call of…I have a question and an answer will require brain power and a possible trip back downstairs. I instantly called the powerhouse from Team Wills upstairs. I maybe on the recovery side of surgery, but some evenings the stamina is just gone.

I think my husband has earned an award for how seriously he has taken our wedding vowels. Sure you say – in sickness and in health – but who really thinks that –in sickness and in health – is going to kick in before your 10th wedding anniversary and continue for the rest of your life.

Now, I just tell people…I’m the driver and he is the team. I support team Wills all I can and he does a great job.

This story is not unique to me. Chris and I have met several couples through colorectal cancer groups and there are many other spouses that have had to take on the caretaker role early on in their marriages. I may be a little biased, but he truly raises the bar for supportive spouses.