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.