Cancer

A dear friend recommended a NetFlix special on Tig Notaro called "Tig". It felt like someone was telling pieces of my own story. And if she thought her story was funny, well, mine is down right hysterical! If you're filling in the blanks, you already know what's coming next.

I've got the cancer.

I was diagnosed at then end of February, and decided to fight silently. But for some reason, in the last few weeks, I've felt like it is time to share my story. I've been weak. Mentally. Physically. But as I started writing, I started feeling stronger. And that was one of my goals. So here we go...

Note:

•Most of this has been written at night while experiencing pain med induced insomnia and recovering from an intestinal virus. Don't judge too harshly. 

•Though this has all been written over the last month, I've post dated everything to correspond with the correct date. I've provided links to posts in chronological order below.

~~~

Everyone hears the word "cancer" and has the same reaction. I still remember when my dad's cousin, Barbara, told me he had cancer. The shock. The tears. The fear. But when I was given my own diagnosis, I felt peace. Cancer has worn out its shock value. The only thing going through my mind was "Okay Schiller, put your heels on, it's your turn to fight." [Cue 'Eye of the Tiger'] Yep, I could hear the 'Bam! Bam Bam BAMs!' in my head. 

And then came the hard part. Friends. When you were your dad's primary caregiver, and you find yourself walking in his shoes two years after he passed, the places your mind goes aren't so fun. But those thoughts will remain between me & God. Words have power, and I choose not to give them that power. At the same time, I want to acknowledge that I went "there". And occasionally, on the hard days, I find myself "there" again. 

My lowest point was when I started loosing hair. My chemo regiment (FOLFOXIRI) is aggressive, but hair loss isn't a side effect. I was told my hair would thin, and it would start midway through treatment. But by the second round, I was shedding hair. Shedding! I had held on to the idea of being sick but not "looking" sick. Lady with bald head screams "I HAVE CANCER!" 

Fred tried to make the shave fun, but I was miserable. I closed my eyes as the long hairs fell to the floor and felt my identity slip away. I look in the mirror at a body full of scars and face that I simply don't recognize. And that's on a good day. The bad days it's straight up Uncle Fester. (No, I haven't tried the light bulb trick...yet.) 

So I write. I write in hopes I'll find strength in giving this story a voice, and with that strength I'll find my reflection. I write because I want to recognize the lovely friends and family that encourage and lift me up when I am weak. I write because, once again, my husband finds himself being a caregiver to a cancer patient. I write because I want people to know cancer doesn't always come with a warning. I write because my treatment is so rare I haven't found much information, and hopefully others facing the same treatment will find this and go in little more prepared. 

Cancer type:  Colon...just like my dad. The kind that "older" people get. Typical reaction from anyone in the medical field is "oh, you're so young". Yep. Story of my life! 

Symptoms:  ZERO. I went to the ER because I was vomiting & dehydrated. I thought it was food poisoning. It was a bowel obstruction, and that's the only reason the cancer was found. I thank God every day for that bowel obstruction!

Family History:  It's recommend that with family history you get a colonoscopy 10 years prior to family member's diagnosis. That would have been 50 (52 to be exact), the typical age you start getting checked. I had planned on 40 to be extra precautions. Ha! If Fred & I are able to have children, their screenings would need to start at 24. 24?!!

Fun Fact:  I'm the second youngest patient my oncologist has treated for colon cancer. The other person was 18, and genetically predisposed. My genetic test came back negative. 

Warning:  Being colon cancer there may be things some find a bit TMI. I'll give a TMI warning!


Chronological Order:

1. Diagnosis*
2. Recovery
3. CT MRI Biopsy, Oh My!*
4. Treatment Plan & Chemo Round 1*
5. Chemo Round 2
6. Shots! Shots! Shots!
7. Chemo Rounds 3-5
8. MRI Check Up*
9. Chemo Round 6*
10. Digging Deep (pun intended)
11. Inspired

*Diagnosis & Treatment Updates

Inspired

Last night I randomly decided to watch Bryant Gumble's sports thingy on HBO. Yes, pretty sure that's the actual name of the show. (Probably not.) It was a segment about the domestic violence rate within the MMA. They interviewed Christy Mack who was beaten by her ex and sporting a bald head. And the reason she gave for being bald, it signified a rebirth. 

Well, isn't that a lovely way to think about chemo and going bald!?

I have never watched Bryant Gumble's sports thingy. I have never watched more than 30 seconds of a MMA fight. I have never heard of Christy Mack and something called a War Machine. A quick Google search and I learned she's apparently a porn star. The ex hacked her hair during the attack. She shaved the rest. And she too struggled with her new look, "It's hard to look in the mirror every day and see someone you don't know." 

My goodness! I'm always fascinated by how and whom God speaks through. So many would ignore her simply because of her occupation, but I deeply thank her. I have struggled with my hair loss. I needed desperately to rethink my situation. I needed hear those words. From a porn star beautiful human being. 

So here I am

Fighting

Proud 

Strong

Being reborn

And I know one day

me and this bald head

will feel beautiful again

Digging Deep (pun intended)

Another day. Another doctor. 

Dr. T is my GI doctor that I've never actually met. Dr. E (Surgeon #1) wanted to personally do the first colonoscopy, so Dr. T got the boot. The only difference between the two colonoscopies (besides the doctor) is drinking the fun juice. This appointment was basically to meet and prescribe the medication. 

The one thing Fred and I noticed was how uncomfortable he seemed. We've noticed this with every first meeting of each new doctor. They don't seem to know how to handle someone my age having this particular cancer. 

Dr. T must have thought I needed some hope. He kept telling us about a friend of his with the same cancer/same stage/same mets (older, of course) that is doing well over five years later with maintenance chemo. I think they expect me to be afraid, or nervous about the future. 

What they don't know is that I've had an amazing life. Every new experience has perfectly prepared me for the next. The night before my dad passed, as he made his final transition, was the hardest thing I had ever experienced. Honestly, it left me terrified. I knew it was preparation for the next hardest thing, and what could be harder than watching someone you love pass away while being responsible for their care?  

Well, here I am. Facing down the same disease. Knowing all the statistics (that I push to the back of my mind and ignore). Knowing what the end stage looks like. But also knowing wherever this experience takes me, I have the strength to push through. Physically. Mentally. Spiritually. I entered this world made to be breakable, but repairable. And after everything I've been through, I like to think of myself as bendable. 

"The robbed that smiles steals something from the thief."

-Shakespeare 

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!