Shots! Shots! Shots!

Shot #1:  Neulasta is the most painful. It's purpose is to produce more white blood cells to help fight off infection during chemo. But holy bone pain! 

This shot is given on my 3rd day post infusion (when I return the 5-FU bag). The bone pain starts within hours and lasts 3 days. These are the days I feel like Uncle Fester. Hunched over, barely wanting to move. If you stay in one position you're good, the second you move it feels like you've aged 50 years. 

The nurses told me Claritin & Benadryl can help, but you have to start it the day before the shot and by then they stopped administering the shot. The only time I didn't have pain was after returning my 5-FU bag a day later than usual, so the shot fell on 4th day post infusion. 

Shot #2:  Lupron is the most annoying. It's purpose is to put me into early menopause in hopes of maintaining fertility after I'm done with chemo. And holy hot flashes! Chemo alone causes hot flashes, so hot flash on to of hot flash. There are nights I wake up to a wet pillow. It's disgusting. 

It does have one positive affect. Having endometriosis I usually have to battle hormonal skin breakouts, but my skin has never looked better. At the same time it's darkening sun damage I received as a kid, so freckles and sun spots are loud & proud. But I'll take freckles over breakouts any day!

Chemo Round 2

Dr. H decided to drop my 5-FU (the chemo bag I carry for 46 hours) down to the European or American dosage (whichever is lower). I gave a little fight. I didn't want to drop dosage. I want to kick this cancer's butt. I can do this! He reminded me: slow and steady wins the race. 

Even before the chemo I started out with associative nausea. By this round they had prescribed the kitchen sink of nausea meds, and I started taking them. Seriously I'm a walking pharmacy. I still got chemo drunk, but no nausea, and no wheelchair means a successful infusion. With the new meds I was able to keep the nausea under control, and felt better after day 7 vs 14!

And then the hair thinning started. Best way to describe it is imagine taking a brush through a shedding pet, and being left with a brush full of fur. That's exactly what was happening. Hair was constantly falling out. I was getting tired of them falling into my food and having to pull them out of my mouth. Just seeing the hair all over my clothes was breaking my heart.

I had been trying to get a chemo cut for months, but we just couldn't find time. I finally made an appointment with a place that does both cuts & wig consultations. Before the appointment I took a photo of the top of my head. It was terrible. A haircut would be a complete waste of money.

It was time to shave. 

I wish I could say I was strong, but this was by far my most mentally breaking moment. I wasn't expecting to shave. I was told thin. Later rounds. Not after two rounds! When the unexpected happens, I sort of lose it. I've always been that way. I desperately wanted to be sick without looking sick. 

The following week I found my wig, and was working up some courage for the big shave. My aunt had planned on coming over and helping, but it got to the point I couldn't stand looking at all my stray hairs. Fred took over. I could tell he was ready to help me have fun with it, but I just couldn't. My hair was my crown. My most favorite accessory. My identity. I closed my eyes and fought the tears as I felt myself disappear. 

I look in the mirror and see someone I don't recognize. On the bad days she looks like Uncle Fester. On the good days she's the toughest damn chick I've ever met. But for the first time in her life, she doesn't feel confident or beautiful.

I've learned I'm most uncomfortable with pretending the wig is my hair. I get compliments, but I don't know how to handle them. I shrug a thank you, but my insides scream 'IT'S NOT YOU'! When I get compliments in the hospital, I'm quick to explain it's a wig. And then I get "oh, that's a nice wig - you spent money on that one!" And somehow that makes me feel better. A little confidence booster. Being myself. Being authentic. 

It's a strange struggle between wanting to be authentic and hide the fact that I'm sick. The truth is I hate feeling/looking weak, and I haven't accepted this new version of myself. When your body changes so vastly, over such a short period of time, it's harder to accept. Fred does everything imaginable to help, but he can't fix this. 

I've cried over the hair loss a lot. One night I was expressing my fear of loosing eyebrows & eyelashes, it feels as though they are the last feminine features I have. Fred looks at me and says you'll always have your eyes, so I laughed through the tears and added boobs to the list. I love him for always helping me laugh through my sorrows. 

Treatment Plan & Chemo Round 1

My oncologist (Dr. H) has me on an aggressive treatment. Most with colon cancer are treated with either FOLFOX or FOLFIRI. I'm getting FOLFOXIRI. Three different chemo drugs (Oxaliplatin, Irinotecan, and 5 FU) at +20% the normal dosage. 12 rounds. 6 hour infusion, and a take home chemo bag that infuses 5-FU over 46 hours. It's a harsh treatment, but attitude is EVERYTHING!

We went over side effects:  nausea, diarrhea, anorexia/loss of appetite, metal mouth, and hair thinning in later rounds. The diarrhea thing was the most emphasized side effect, and this is where I learned to be thankful for my tummy gremlin (stoma). Some people on chemo end up wearing diapers or having to apply a little butt paste. Thankfully that wouldn't be my experience. 

Round 1:  I wasn't expecting it to be hard. Everything I've read and experienced with my dad told me the first round was the easiest. Chemo compounds and gets harder over time. 

With about two hours to go the neuropathy started affecting my speech, and then the nausea hit. My tongue was half numb, so my speech was slurred. I refer to it as being chemo drunk. I was so nauseous I needed a wheelchair to get to the car. By that evening the neuropathy & nausea subsided, and I thought I was home free. 

Nope. The infusion was Tuesday, and by Saturday the nausea returned. I had Zofram and Ativan to help with nausea. Zofram is hit or miss. Ativan knocks me out. The more I moved the worse it got. Fred ran out and got ginger gum, Dramamine, and an essential oil based product to rub behind my ears. Anything he found for nausea, he bought!

I had a newborn photo shoot scheduled, and I had to leave the shoot early. I was struggling with fatigue, a hormonal hot flash on top of chemo hot flash, and nausea every time I moved. It was awful. I hate failure. I promised to return the following weekend. 

By Sunday I was weak & dehydrated. I waited until Dr. H's office opened to go in an get some fluids. I was feeling pretty terrible, and Dr. H decided to admit me for a "tune-up". He explained early on to expect 24-hour tune-ups. He'd rather me go into the hospital for a day vs. trying to tough it out and be admitted for a week. 

Once we got the nausea under control and I was able get some food down, I was ready to be released. I had gone in just before my blood levels started to drop, so the upside was now I had an idea of when I needed a "tune-up" before my levels got out of control. 

I continued through the rest of the week struggling to eat. Loss of appetite is such a strange feeling. Your body is hungry but nothing is appealing. Nothing. And sometimes trying to force food brings on nausea. I downed a protein shake so I had enough energy to get through the make-up photo shoot. (I'm truly grateful that family was so incredibly understanding.)

My appetite returned the day before Round 2 was scheduled. Needless to say Round 2 was delayed a week. But the upside is I had Biopsy #2 scheduled, and based on the first biopsy I needed time to recover without chemo. In all honesty I wanted to push through, but Dr. H's saying is slow and steady wins the race. 

CT MRI Biopsy, Oh My!

Five weeks after surgery I was finally healed enough to lay flat for thirty minutes, and able to get a new MRI. The previous MRI showed a possible spot on the liver, but it wasn't a good scan because it was post-surgery. This was a big one. The one that would confirm stage III or IV. 

•I have a tiny 1.5 cm lesion on the liver.

•I'm officially diagnosed as stage IV.

A biopsy followed to confirm colon cancer. 

Enter the most painful thing I've experienced to date. Biopsy #1. Going in I knew there was a 50/50 chance it would be painful, and because of the location they didn't allow much sedation. I felt the crunch as the needle passed through my tissues. I was crying on the table. Crying! I am not a crier. I breathe or moan through pain. When I cry, it's bad. And the pain didn't go away after the procedure. Two rounds of morphine did nothing. Dilaudid finally got the pain under control. And then I spent the next five days drugged, attached to a heating pad. 

When you label something #1, there has to be a #2. Yep. All that pain and it wasn't a good sample. Just the thought of having go through that all over again had me in tears. But the second would be done at Emory, and I made them well aware of the pain I experienced during the first biopsy. The first was CT guided, but the Emory biopsy team came in and based on the location they wanted to do MRI guided. It meant I would have to reschedule, but if there was even a slight chance it would make the procedure less painful I jumped!

By the time the MRI assisted biopsy was scheduled, I had completed my first round of chemo. This time I was under twilight sedation. You can listen and complete tasks, but typically don't remember. Oh, I remember. I let out a good moan as the needle pushed through, the doctor was surprised that I was awoken by the pain and quickly increased the sedation meds. I was given a script for Percocet to manage any post procedure pain (I wasn't prescribed anything after the first biopsy). The team at Emory did a fantastic job, and I only had minor pain. Hallelujah! 

If your lesion is high, on the "top" of the liver, ask for a MRI guided biopsy. Seriously. No one needs to experience the level of pain I went through with the CT guided biopsy. 

Recovery

After being released, cancer took a back seat to recovery. And that's why we kept the diagnosis relatively quiet. I didn't have an exact diagnosis or treatment plan, and didn't want to face those questions. It was time to focus on healing. 

Two weeks after surgery I was having terrible back spasms. I had never experienced a back spasm. It was absolute misery! Percocet wasn't strong enough to ease the pain, so I just had to breathe through. Of course this started over the weekend, so we had to wait until Monday to revisit my surgeon's office.

Dr. E removed the staples and sent me off for a CT concerned a pulmonary embolism was causing the back spasms. It wasn't, but by the time I returned to the office 4" of my incision reopened and was bleeding profusely. It couldn't be stitched. The wound had to heal from inside out, so home health turned into wound care. The one positive. The nerves didn't have time to heal, so while it looked awful I felt nothing during bandage changes. 

The hardest part of recovery, and I seem to have this with every surgery, is maintaining an appetite so I can take narcotic pain meds. I learned to set alarms so I didn't miss a dose, because a mere 30 minutes late had me practicing Lamaz. After a month on Percocet, I was able to drop down to Loratab. 

Five weeks post-surgery the scans & biopsies started. Around this time I noticed the upper part of my scar getting tight, and assumed it was part of the healing process. Then a little scab came off with a stitch that didn't dissolve, and I noticed pus on the end. Within hours it was blistered and oozing. 

Enter infection & open wound number two. Back to the surgeon's office to have the infection drained. This wound was a little over 2" long, but it was deep and had to be packed. The nerves had healed, so this one was super painful. I took Percocet before bandage changes, and it barely took the edge off. Thankfully my wound care nurses stepped in, so I was only wet packing the wound for five days. We switched over to magical silver gauze and bandage changes became tearless. 

It took three months for the open wounds to close, and amazingly they both closed at the same time. 

Diagnosis

At the end of February, I was sick. Terrible stomach cramps, vomiting to the point of dehydration. Fred and I had tickets to Oysterfest and I was thinking I would meet up with him later, nope. By the time he got home I was deciding between urgent care or going to the ER. I let him sleep and when he woke up the next morning I had decided ER. 

I was given some fluids in the ER, and they did a CT scan. There was a spot on my colon, but the doctor assumed it was inflamed because I was sick. I was recommended a surgeon, but more of an "eh, if you get around to it". My symptoms continued, so we made an appointment. 

By the time we got to the surgeon, I just knew it was endometriosis related. From my last surgery, I know my uterus is stuck to my intestines. It had to be that it entered my intestines/colon. Even given family history my surgeon (Dr. E) kept assuring me it probably wasn't cancer. I was admitted to the hospital for a colonoscopy. 

Fast forward. I had a bowel obstruction & was wheeled into surgery. 

I awoke to a body that felt like a bomb had gone off. Eighteen inch vertical abdominal incision, 34 staples, and a temporary ostomy to boot. Yeah, the poop bag. Later on I would be grateful for my tummy gremlin (stoma), but in the beginning I truly hated my body. 

I was alone when I was given the cancer diagnosis. And that was the day I learned how much of a mental game I had ahead. That day I fell apart. It was student nurse day. I was breaking mentally, and my body reacted physically. The nurse & student nurse didn't notice. The patient care tech took one look and knew I needed to relax. She gave me my first bed bath, and helped me calm myself. I'll be forever grateful for her care. 

My brother and Fred arrived at the same time. How do you tell your husband we're about to start another cancer journey? Again?! So soon after we had lost my dad, to the same damn cancer? I whispered it to my brother first, and I guess that gave me enough strength to speak it into existence. Stage III Colon Cancer, possible spot on the liver. 

Recovering from surgery, cancer diagnosis, and having to learn how to manage this new body was impossible. Fred jumped in and learned everything. From helping the ostomy nurse, to sponge baths, to distracting me so I could push through the next pain med, Fred became my saving grace. At one point he was helping me shower and wash my hair, and I look down at myself naked, body ripped apart, belching like a man and just start laughing. I tell him I've never felt sexier. The truth is I have never felt more loved. This man is truly my super hero. 

We quickly learned I was given the worst care when I didn't have someone sitting with me, so Fred started lining up "babysitters". Friends that would stay with me, and give him time off to take care of our house, rest and wrap his head around what was happening. Friends that held my hand, rubbed my feet, and helped me feel human. I even had friends jump in and help the ostomy nurse. I have some GREAT friends, and words don't exist to express my gratitude. 

My hospital room smelled like a floral shop!

I was released from the hospital after 6 days, and I spent the next month recovering. Based on how easy it was to get up and walk after surgery I expected an easy recovery, it wasn't.