Not Your Neighbor's Chemo Part I

We went in to have the first round of chemo on the 11th. Although I was very nervous all started out well. I was given some saline and a steroid through the port after the blood draw. I was very anxious about them accessing the port as I heard many complaints of pain, but for me it was merely a prick. No biggie.

I sent Jim down to get us some lunch as my wonderful oncology nurse hooked up a bag of anti nausea. That is when my head and face filled with heat and pressure and I almost passed out. My blood pressure rose and fell dramatically in the next few minutes and so I was whisked off in an ambulance to the hospital across the street (state regulations). I never even got to the chemo.
It was determined I had an allergic reaction to the anti nausea med. It was a full week before I felt even remotely like myself. I could barely stand at the kid's dentist office to pay a bill 4 days later.
I saw my oncologist on the 14th and we decided to change up the nausea med and try again on the 18th. I worried I would be starting too late, but she assured me it would be fine.

FOLFOX is presented by drs as well tolerated. I think they say this because people don't usually lose all of their hair. But FOLFOX is a doozie of a combo-drug. The biggest complaint is neuropathy. Acute and prolonged. Many people suffer for years after taking FOLFOX and most can't finish the full course of treatment because of the severe side effects. I didn't learn any of that from my doctors. I was to be given FOLFOX for 12 treatments every other week with a take home fanny pack of drugs to be infused in me for the next 46 hours after my visit to the treatment center.

FOLFOX is a combination of three drugs. 5FU, Leucovorin, and Oxaliplatin.
The list of common side effects are:
Risk of Infection
Bruising & Bleeding
Anemia
Feeling Sick
Numb or Tingling Hands & Feet
Tiredness
Sore Mouth
Diarrhea
Hair Loss or Thinning
Soreness and Redness of Palms of Hands and Soles of Feet
Skin Changes
Eye Problems

Less common side effects include:
Breathing & Swallowing Issues
Changes in the Way the Heart Works
Hearing Problems

I had done a lot of reading. I knew my hair would probably thin and that I would be extremely sensitive to cold. That I would need to wear gloves to take anything out of the fridge and warm up anything cold before even thinking about drinking it. I followed a treatment diary of another CRC patient and bought everything I thought I could possibly need to get through the next 6 months. I knew to expect most of the side effects 3 or 4 treatments in and that they would get worse as they went along.
The start of my second attempt at treatment went well. I was nervous and so they gave me some Ativan (I had already taken .05 mg. Xanax at home before arriving) which not only calms you down, but is said to aid in anti nausea as well. It made me feel loopy, but relaxed. I had no reaction to the new nausea drug (Emend) this time.
About halfway through I went to the bathroom and when I washed my hands they tingled like when they wake up after falling asleep. Its not heard of very often to have such an immediate side effect present itself during your first chemo, but I knew to expect it so it didn't shock or scare me. With 3 minutes left in the bag of Oxaliplatin however I became very nauseous. I was unable to speak clearly and was given another dose of Ativan to try and combat the nausea. I was too weak to walk and was wheeled out to our car. Once home I fell asleep and felt much better upon waking. But the neuropathy was already kicking in hard and heavy. The next day when I went to take wet laundry out to put in the dryer my throat seized from just inhaling the cold air. I lost my ability to speak and what  felt like the ability to breath for about 30 seconds. It was frightening.

For the next several days my hands and feet tingled whether I was exposed to cold or not. All drinks had to be warm otherwise I would have the sensation of swallowing shards of glass. I kept track of all my side effects so I could be sure and let my oncologist know. This all lasted for about a week.
It was decided that perhaps the combo of Xanax and Ativan is what made me nauseous and that we should stick to one or the other for the next treatment. We chose the Xanax because I had tolerated it fine before and we figured it was the Ativan that made me sick.

We figured wrong.

I Blame Ben

Recovery from surgery was pretty smooth. I would say I was back to myself at around 2 weeks. Only hiccup was they sent me home with a blood thinning prescription that was 4 times the amount I was supposed to be sent home with. They send you home with blood thinners after a major surgery to be sure you don't form clots from all that laying around and recovering. I had them in the hospital too. Being on 4 times the correct amount however landed me  back at the surgeon's office about a week after surgery because of profuse bleeding. It was then the mistake was discovered. I went off the blood thinners until the bleeding stopped and then went back on the correct dosage. We blamed it on the discharge resident Ben. We liked Ben and we joked abut the mistake, but truthfully it was a little scary and Dr. Stryker was definitely not pleased.

In retrospect I probably should have taken note of this setback, seen it as an omen. It turns out as far "things that can happen" this was just the beginning. A sign of things to come.

Having shots put into your belly 2 times a day for 28 days isn't fun. I could not muster up the strength to do it myself so my Jim did it for me. Thank God for Jim. The shots sting a bit and your belly bruises. I dreaded getting them and hating seeing the box after box after box of syringes and alcohol pads on our living room shelves. Just another suck to the list of suckage.

We met with the oncologist on the 27th. We liked her and the treatment plan was put in place. 12 rounds of FOLFOX starting in 2 weeks which would be administered through a port I would have surgically implanted on the 8th of May. First chemo treatment would be 3 days later on the 11th.

In the meantime I went to the dentist, had a pap smear, and got my hair done at an all organic salon. I was ready. Or so I thought.

If you are about to get a port you may want to skip this next paragraph. I read and read and read about the simplicity of this procedure but for me it was like a nightmare. I remember all of it because they don't want you totally out. And that sucked. Being awake and being operated on at the same time is not pleasant. In fact it was so unpleasant I'm finding it hard to even write about right now. I never actually felt any drugs kick in. I was way too conscious and aware. It felt like I was in a horror movie as I was being rolled into a basement where a woman eating her lunch in the hallway opened the surgery doors for us. I liked the young nurse I called Gus (I don't really know if that was his name or not. I may have made it up). But became concerned when his choice of music was the Elton John Pandora station. No 20 something year old should be choosing to listen to Elton John in my opinion.

And that's how I made it through the operation. Making fun of Gus' musical choices.

The nurses have to wear what looks like hockey goalie uniforms and stand behind large plastic windows so as not to be overly radiated. And you are prepped and prepped and prepped and then blue sanitary sheets are thrown over your face so that you can't see what's happening to you. I was able to say when things got too uncomfortable, which I guess is good, but the pushing and rubbing and just plan being awake was too much for me. I hated it. It took quite a few days before the pain from the surgery subsided-something I hadn't expected. And I'm still not used to the look of it protruding from my chest or the fact that I can feel it in there, but ports make everything easier when it comes to administering chemo and getting blood drawn. Or so I was told.

Surgery Day

Surgery was scheduled for April 9th at 9:15 which meant we had to be there at 7:15. I didn't really eat the day before (or many days before that!) and couldn't  drink past midnight. My mouth was unbearably dry so I kept running to the bathroom to rinse and spit.

Honestly I barely remember changing clothes. I do know I had to have a pregnancy test which was difficult to do considering I hadn't been able to drink. I met nurses, anesthesiologists, and got to see my surgeon. I was given an epidural to manage the pain and make recovery easier. Narcotics block you up and that's the last thing you want when you have a colon resection.

The epidural went pretty smoothly. I was completely unfamiliar as I had all my babies at home. But I had the utmost confidence in my pain management team even after only having just met them moments before. Shortly after the epidural was put in I was wheeled away into the operating room. Big, sterile, bright, overwhelming. loaded with people-that's how I remember it. I saw my surgeon. He asked me to lift my gown and put my left leg in a stirrup and the next thing I knew I was in the recovery room.

I remember Dr. Stryker coming in and saying "The surgery went great!", but I could only respond by saying "It hurts! It hurts! It hurts!". And it did. Apparently there is a short time between coming out of surgery and recovering where the anesthesia must wear off before the epidural really kicks in. I remember feeling my abdomen and asking if I had a bag. The nurse told me no, there was no bag. Good news #1.

It wasn't long before I was being brought up to my room, pretty much close to pain free.
As I was being wheeled into my room I kept trying to see the look on Jim's face and decipher it. He didn't look happy (nor sad) and it was making me nervous. When I asked him he said it went great. The dr. came out almost an hour earlier than expected, thrilled with the result, said that he was concerned the tumor may have left the wall a little bit, but it was altogether in one tight mass. He took 16 lymph nodes and to him, they looked good. I had to double check with Katie (she insisted on coming) whether any of this was true because Jim was his usual hard to read self. She confirmed it was and joked with Jim that he was really bad at this kind of thing.

And so I felt ok. The pain was tolerable. Jim stayed the first night. I walked a bit the second day. Katie stayed the second night. I walked more and more. Jim stayed again and then Ruth stayed. I was getting better every day, eating (what I could-hospital food is truly awful), and feeling stronger. I was released the 5th day after I had met all the requirements.
I took one Norco after my epidural was removed and one when I got home and I haven't looked back. Despite having to deal with my final period and minor aches and pains, I would say it was a snap.
On the day of my release my surgeon came in. He said again how great the surgery went. He said he had received the pathology report and the bit of tumor he thought was exiting the bowel wall was actually a lymph node. He said the tumor remained within the walls, but there was a lymph node resting on top of the wall where the tumor was and it indeed had cancer cells in it. At this point I melted a little bit ,but he wouldn't have it. I said "Oh my God", and he said "Oh my God what?! You're fine, you're going to be fine. There were barely any cells in it and everything else looks great! I took 16 total lymph nodes 15 of which were clear. You may have to have chemo, but it won't be your neighbor with breast cancer's chemo. You'll keep your hair and be able to work. You are fine!".
And with that I decided to believe him.

Paging Dr. Stryker

When I was 39, nearly 40, I got hit with an attack of kidney stones. After lots of tests it was discovered that I had a benign tumor on my parathyroid. When the local Indiana dr. discussed opening my neck from ear to ear to remove the tumor, we looked to Chicago. In the end my tumor was removed by a young surgeon named Sturgeon (love that!) at Northwestern and I was left with a barely noticeable 1 inch scar on my throat. So in the colonoscopy room when the dr. told us we needed to see a surgeon right away Jim said "We'll be going to Northwestern". Just so happens the doc had a friend at Northwestern, he gave him a buzz and that's where we got the name Stryker (love that too!).
We of course googled Dr. Stryker and as it turns out he's the guy you want to see. We made the appointment and we were in his office one week and one day after the colonoscopy. To prepare there's some more not eating and then the morning of an enema. Not entirely pleasant, but doable.
We had the CT disc and all reports ready for the doc and after he gave me what has so far been the most invasive testing I'd experienced in my life (flexible sigmoidoscopy) we were back in his office ready to talk. Just like in the movies.
The surgery is performed to remove the tumor and the surrounding lymph nodes. It is done by cutting the margins of the tumourous colon and then reattaching the two remaining ends. It's called a colon resection.
He told us all the possibilities, even how things go with people with tumors other than where mine was, he told us EVERYTHING. Bottom line was my tumor was not in the best of places, a little lower than he preferred and expected. My ovaries might be in the way. Did I need them? Hell no, take 'em! I may have to wake up with an illesotomy, but it would be temporary. Bring it! I would not need radiation, but there was a 50% chance of adjuvant chemotherapy. I'm down! Was I busy next Thursday because that was his first opening? Who cares?!
At this point Dr. Stryker told me how he thought he'd know me in 20 years. How folks come into to see him and when he takes a look at everything he wonders how he'll ever be able to help them. But when people like me come in he's happy because he's got this and it's going to be just fine. In 5 years time we'll be toasting with champagne in his office and he'll be kicking me out the door permanently. These are good things to hear and I don't think he says them lightly, and they gave me the sliver of hope I needed to keep going, but the fear doesn't really subside. I'm as scared as I was when this first started. I'm just done melting on the floor. For now.
I was sent downstairs for a blood draw and chest X-ray. The CT scan didn't include my chest so I believe not only is the chest X-ray a way to make sure you're healthy enough for surgery but also to check for any signs of metastasis. Scary.  And I was told to set up an appointment with a cardiologist and a stoma nurse and then we'd be ready to roll.

CT Scan

My dr. called  me early evening Thursday April 2nd. I didn't want to take his call, but didn't even get the chance to make that decision because I left my phone downstairs when I went to brush my teeth. 3 minutes later there's a message on my phone. I got brave and listened and all he said was he wanted to discuss the CT results with me and that it was good news. That gave me the courage to call him back and he proceeded to tell me the tumor appeared to still be within the walls of the colon and that the lymphnodes looked good.
Prior to receiving this message I had been googling hospice so that shows you exactly where I was and where I had been. Unfortunately I had succeeded in getting Jim to go there with me.
The amount of stress I put on my body since I had been diagnosed was insane. Complete sobbing breakdowns, desperate sleepless nights, not to mention all of the tests and bariums and lack of eating. My BMs began to look very suspicious of a very advanced cancer stage so says me and Dr. Google and so I tried desperately to wrap my head around that. Oh the places you go.
When I received the call the moment after was one of complete and utter joy. I could not wait to see the surgeon, have an enema, and be examined in ways I had never dreamed of. I was ecstatic, so thankful.
But about 5 minutes of this and I came back down. Not all the way down, just down enough to know a CT scan is never a guarantee and although this was good news and more than likely I could stop looking at hospice, this was just the beginning and we wouldn't know a thing until after surgery.

Ok, Is That Considered Outpatient?

Spent the morning trying to determine whether my surgery SCHEDULED FOR THURSDAY needed a precert or whatever. My very kind customer service representive repeatedly told me how great my insurance was and how it was no wonder considering I paid so much for it. I spent forty minutes on the phone with someone who thought perhaps my colon resection due to a cancerous mass would be an outpatient procedure. What. The. Fuck.

Honestly, Insurance Companies, pay attention! If you're looking to pay less in medical bills and keep more of your premiums try educating your employees. The stress put upon your customers dealing with your uneducated employees is not doing anything at all to reduce the size of their tumors, I can promise you that.

But I'm jumping ahead. I'm not sure I confirmed the colonscopy diagnosis. The pathology report agreed with my doctor and then some. This discovery led to a complete melt down on our business office carpet where I had to scrape myself up off the floor after too much googling. The following days were a complete devastation of all things normal and wonderful and the places I went to (and dragged others) were the deepest and darkest I've ever been.

One week from colonoscopy I was prepped for CT scan. Which takes a kind of strength I didn't quite have. I made it through, but not before quaking and shivering when I was told there would be an IV as well as the contrast I had forced down hours earlier. I slowly breathed through with eyes closed managing to stay calm.
Bottom line: I was alone, no matter who was in the waiting room waiting for me, and knew that I would be for much of the rest of this journey.

Oh Shit (Pun Completely and Utterly Intended)

So my story starts, apparently, like a lot of others. 
Did I have symptoms?
Yes.
Did I ignore them?
Yes. 
Am I a dumbass?
Yes.
In my defense I would not say my symptoms were overwhelming, but they were there. The occasional urgency, some blood here and there...

~I know what you're thinkng. You're thinking "Wait. You ignored a little blood here and there? You are a dumbass!" But friends that last baby, albeit 14 years ago, was 11.9! I have hemroids! I've had hemroids. Sometimes those hemroids bleed.  They're here to stay. There is just  no turning back from something like that!
Anyway,  you get the picture.~

It wasn't until my gynecologist had the audacity to give me, a 47 year old young, a rectal exam that I thought much about it.
Was I in denial?
Probably.

Truth be told this wasn't the first time my gynecologist got friendly with my other nether region. 2 years prior that same test came back negative, or was it 3?
No matter, August of 2014 my fecal occult test came back positive. I made an appointment with a gastroentologist in Skokie. They could do the colonoscopy in November. But it turned out it wasn't a colonoscopy I ended up actually being  scheduled for and this was a problem because I needed a ride for a colonoscopy. And getting a ride, an open date, any free time is not something that happens very easily in this house. So I cancelled that appointment and made one for December with a local doc Indiana side. Colonoscopy was scheduled for January- no real rush. I'm young, a religious vegetarian (almost 8 years now), exercise (sometimes), I'm not even obese. I have no "true" symptoms. I have "no family history". Enjoy the holidays!

Turns out my paternal grandfather died of colon cancer at 59. For some reason I thought he had stomach cancer. For some other reason my mom and aunt (his very own daughter) thought he died of heart problems.
Now, here comes the first of what will probably be a pretty long line of demands I will be making on you:
Get your family health history straight folks! It's a life saver.

1 day before the colonoscopy was to be performed I was called and told the surgi center "was not in our insurance network, did I want to follow through?" Hell no. Our family endured 2 separate surgeries last summer. Financially "out of network" is out of the question.
Jim immediately got on a new insurance search and a couple weeks and $500.00 more a month later we were covered. Everywhere. I rescheduled the colonoscopy for March and dreaded the mere thought of it for the next 8 weeks.

In another post I promise to reveal to you, the innocent and inexperienced never- had -a -colonoscopy- sect, the trials and tribulations  wonders of the anal endoscopy. Suffice it to say for now, when compared to a cancer diagnosis it is peaches and cream, a walk in the park, fucking heaven on earth. And that's not an exaggeration.

For now let's just say my doc did his job and then after I woke back up told us that a "30 mm sessile polypoid lesion was found in my recto-sigmoid colon". That it would have to be removed surgically and that it was "likely malignant". He told us to schedule a CEA blood test, a CT scan and an appointment with a surgeon. Like now.

Directly after hearing this we drove a few miles away to our local lab and did the CEA test. I remember very little of it. And after that we drove to a local diner where I promptly ate a patty melt. I remember eating the patty melt, but the memory comes to me in a dream-like state with foggy softness around the edges and a feeling of remoteness as if I wasn't really there. This is probably due to a certain degree of shock, but mostly because of the excellent drugs administered prior to colonoscopy!

The rest of the night sucked. We Googled, told the kids, Googled, told my sister, Googled some more and then I tried to sleep. I woke up every little bit to complete terror and sadness. I don't want to die. Not just yet.  I can't leave my kids or my husband. Not just yet. I need more time. Please.   

Today, Sunday, March 29 2015 my doctor called to confirm that I do indeed have cancer. (Did I just write that?)
At this point we're hoping I get to see the surgeon this week, schedule the surgery within the next 2 and be cancer free ASAP.
At this point I'm doing ok.
In the daylight hours.
On and off.
Definitely better when I'm not noticing every single physical twinge and wondering "Is that it?! Can I feel it?".
Night time is the worst.
I wake up at least a couple times a night and the absolute very first thought that crosses my mind is cancer. As Jim says it's like a blaring red alarm. It's almost as if it's what's actually waking you.
All I can say is thank God for electronic devices.
If I didn't have this iPad nobody would be getting any sleep.