Chemo Round 6

While getting blood work Fred & Dr. H had a chat, and this is why I love my oncologist. I need for them to have a relationship. And the truth is, we both had a relationship with him through caring for my dad. So while it's been strange literally walking in my dad's footsteps, getting chemo from the same chair he once sat. It's also refreshing being truly comfortable with my oncologist from day one. 

During their conversation, Fred had apparently expressed our concern with Dr. S and the MRI debacle. And Dr. H was quick to put me at ease. "I would tell you if I didn't think he was a good fit, but he is your surgeon." The relief was immediate. 

Going forward chemo is changing. We were in fight mode, throwing everything I could physically manage to shrink the lesion, and now we are in maintenance mode. Instead of being knocked out for a week+, Dr. H wants to get it down to three days. So new treatment is FOLFOX with a biologic (and I can't remember the name)...it's the one that hinders growth of new blood vessels to feed any cancer lesions. And we will reevaluate after 12 rounds. Yes, I expected this. Many people with stage IV continue with maintenance chemo. 

With surgery around the corner, and because chemo causes blood levels to drop, Dr. H wants chemo to stop three weeks prior. Meaning #6 will be my last round, and it will pick back up four weeks after surgery. He doesn't want me drinking colonoscopy "fun juice" while on chemo, so trying to squeeze that in the week before surgery. 

My blood levels were still a little off from the intestinal virus, so Dr. H let me decide if I felt strong enough for this round. While I still felt a little weak, I was okay to push forward knowing it would be easier than previous rounds. 

I struggled through this round a little bit, but nothing like previous rounds. The infusion only took three hours. (Previous rounds took six-seven hours, depending on what side effects decided to show up.) A little nausea, a lot of fatigue, but by day five I felt well enough to get out of the house. For the first time since March, I'm able to enjoy every weekend. Holy moly I can manage this chemo! Especially knowing it will be even easier when my blood levels improve. 

By the way, I struggled with that intestinal virus for three weeks. That thing completely knocked me out! This virus is something healthy people recover from in 2-5 days. Having a weakened immune system is no joke!

MRI Check Up

Most people tend to get nervous before their MRI check ups, but because I had a CT that showed clear shrinkage I was feeling pretty good. At least until we started driving, and then nerves kicked in anyway. 

Dr. S (Surgeon 2) scheduled a consultation immediately following the MRI. I was expecting good news. What I got was the exact opposite. 

I have one lesion on the liver that measures 1.5 cm. What I was told is now I had four lesions. Four! (Somehow I remained fairly calm, fairly certain it was shock.) We were told I have one lesion in the middle, three surrounding. 

Then Fred asked about the markers he had placed during the MRI assisted biopsy. Blank face. "You had markers placed? How many?" (Um, yeah...three and YOU ordered them!) "Well, the radiologist is having a hard time reading the MRI." (Well, how about you & the radiologist read my damn chart before you unnecessarily scare a patient to death!) "I want to see you again after the radiologist has more time, I prefer in-person consultations." 

And then he started asking me questions about my ostomy surgery. He couldn't read the surgeon's handwriting. Totally get that, but maybe call the surgeon and ask him. (The questions were far too technical for a patient to answer, and others I simply didn't know.) 

Surgeon 2 questioning me about the ostomy and not Surgeon 1. The fact that he clearly hadn't read my chart and refreshed himself on my case before the consultation. I was left with a bad feeling about this surgeon, and if there is one thing I've learned it's trust my instincts! I went home that night and started searching for a second opinion. If he didn't straighten himself out by the next appointment, I was moving on!

The next appointment. He immediately starts talking surgery. We had to ask him for the MRI results. "It's shrunk 50%." (Okay, what about the other "lesions".) "They were reading the markers as lesions." (Thank you Jesus! ...MORONS! Next time read the chart!)

That's it. Very matter of fact. No excitement or fist-bump like Dr. H (my oncologist). But at least he had a conversation with Surgeon 1 and could clearly talk surgery and recommendations. 

Going Forward:  [TMI'ish Warning]

Liver resection surgery is planned for August 18th. Because of the location it will NOT be laparoscopic. I had already assumed that based the difficult biopsies. Recovery time is 4 weeks (I'll be in the hospital at least 5-days). 

The original colonoscopy didn't get past the bowel blockage. As a precaution, he wants to close the gap and get the other half checked. (I already had a consultation scheduled with Dr. T, a GI doctor.)

Chemo Rounds 3-5

#3

With about an hour to go with my infusion the nausea came on strong & fast. I needed a barf bag STAT. The in-house pharmacy tends to complain when they have to dose meds late in the day, but they took one look at me and shut the hell up! Needless to say, Fred had to wheelchair me out again. 

This is round I start to understand why my nurses tell me I have reason to complain. I've never seen anyone have to use a wheelchair after chemo. Never. Including when my dad was getting his chemo infusions. This chemo regiment is tough, but I'm tougher.

#4

Other than nausea, my side effects are neuropathy (numb/tingling) in my fingertips and ankles & chemical like burning in my eyes. After round 3 my ankles were terribly sore. I typically didn't note side effects unless they make life unbearable, but the eye thing made me scared and I started noting all side effects. 

Chemo adds pressure to your eyes, so they thought the eye pain could be glaucoma. They scheduled an eye exam. No glaucoma!

This round took place at the Lawrenceville office. The nurse asked if I had any side effects and I just laughed. Lady get ready to see something you've never seen! 

Sure enough chemo drunk (numb tongue) and nausea came on with an hour to go. She was quick to address the nausea so it never got out of control. But the neuropathy in my ankles was so bad I couldn't walk, and once again I needed the wheelchair. The nurse was shocked that I couldn't walk. Just a couple hours earlier I walked to the bathroom no problem. Yep. That's how I do chemo. 

I was so incredibly weak when we got home. I had to hold on to Fred just to walk from the car to our house. For the next three days I had to stabilize myself to walk around the house. Enter scary side effect number two. 

#5

I still had neuropathy in my fingertips, and with the difficulty walking Dr. H held off on the Iritotechan and upped the other drugs. This meant getting a push of the 5-FU. 

Nausea was a little harder to control this round, but I didn't have any ankle or eye pain. I had asked the nurse if it was possible to experience neuropathy in the eyes, sure enough it was the Iritotechan that caused the pain. 

I started experiencing an odd pain in my upper abdomen just under my ribs on the left side. I went in for a check and Dr. H decided to allow whatever was happening to "define itself". By that night I was cramping, and it felt like something was off in my intestines. The next morning I was sent for a CT. I could tell everyone was concerned. Anytime there's a new odd pain, they worry about new growth. 

By the time I made it back to the office, Dr. H was so excited to give me the results he didn't even wait for me to get into a room. Chemo is working! The lesion on the liver is shrinking! There was some swelling around my intestines, and I had an intestinal virus. No treatment, it simply had to run its course. 

When you have a weakened immune system, "run its course" is much harder. I was in/out of the office three times for fluids. And the third time, just getting myself ready left me breathless. I'm used to the fatigue, but getting out of breath from getting dressed was reaching a whole new level of pathetic! 

Needless to say chemo #6 was delayed. 

My chemo pal. She never leaves my side on the bad days. This is how we chemo!

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.