Chemo starts tomorrow

Here is a picture I took tonight at my most cancerous. Tomorrow the doctors are going to start to poison it out of me. In the picture, there are two superficial lymph nodes, and you get a little glimpse at the scar from my biopsy. The lymph node on my collar bone has definitely become noticeably more prominent over the past few weeks, so even though I’m not looking forward to tomorrow, I’m relieved that it’s happening.

I’m looking at 4 cycles of ABVD, with a PET scan after 2 cycles to see how it’s going. Each cycle lasts a month and consists of two treatments, so there will be 8 chemo treatments all together. Since it’s going to make my immune system go out of whack, I told my students yesterday so that we can talk about hygiene. (It wasn’t the most fun day of school, but I think it was significantly less stressful than Halloween.) I also had to give the students a lesson in breaking bad news to other people when two 8th graders walked into the room to ask me a question and a 5th grader yelled out, “we’re talking about something very serious! Ms. Molino has LYMPHOMA!”

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The Great Egg Debacle

To preface this whole story, I should say that I’m currently going through some fertility treatments to freeze some eggs before chemo because there is a risk of infertility as a result. Thankfully, there are programs that help with the crazy cost of medications for oncofertility patients because my insurance doesn’t cover it. (Most insurances are apparently not great with fertility regardless of the circumstance.)

On Friday, my nurse called in a prescription for four medications, two of which I was supposed to start on Saturday. The bag containing the medicines was huge when I picked it up. It not only included the medications, but also a number of syringes and needles and a red sharps container. There was a green sign on the bag that said one of the medications, Follistim, had to be refrigerated. When I got home, I opened up the bag and found a box that was labelled as a Follistim pen. I put that in the fridge until the next morning.

On Saturday, my parents drove to Hoboken to pick me and Jack up at 6:30 am and drive us to a fertility place in a different part of NJ. We weren’t sure if I would need the medication when I saw the doctor so I put the Follistim pen in a cooler bag with an ice pack and took the giant bag of medications with me. It turns out, it was a really quick trip to get an ultrasound and some blood work done, so the medication was not needed until the evening.

We were back in Hoboken fairly early, which was great since we were getting picked up by some friends to head to an out of town wedding. I don’t really believe in omens, but I should have known Saturday was going to have a lot of stuff go wrong when we picked up a $7 card (!) at CVS which I accidentally ruined with a very inky pen, requiring us to buy a second card.

We brought the paper bag and the cooler bag, in addition to our clothes for the wedding. At the hotel during check-in, we were given a bag with some snacks from the bride and groom. Jack had been holding the card, but while were were bringing the bags up to our room, he slipped the card into the bag with the snacks. Once we got situated in the room, I decided to peruse the snacks. I noticed a card and unfortunately, my first thought was not, “There’s the card we’re giving for the wedding.” I acted totally on impulse. I saw a sealed card and just ripped it open. Jack tried to stop me, but it was too late. I destroyed the envelope. Tape was not going to fix it. That was bad omen #2.

We decided that Jack would get his suit on and go looking for a card store so we can get an envelope. Jack then discovered he did not pack a tie. (Not the end of the world, but let’s call that omen #3)

Jack left, tie-less to go try to find an envelope and a tie. I guess we weren’t within walking distance from a pharmacy, so he did not come back with an envelope, but he did have a tie as our friend had packed an extra.

After the ceremony, we had a few hours to kill before the reception. We ate some lunch and then decided to go set up the medications in our hotel room so we could come up after the cocktail hour, inject the medication, and go back down for dinner.

We got all the stuff we needed for the Menopur (sharps container, syringe, extra needle, Q-cap for reconstitution, Menopur, diluent, and alcohol swabs) and then we took the cooler bag out of the fridge containing the Follistim. It turns out that the Follistim pen is simply a delivery method and that the Follistim AQ cartridge (which was not in the bag) actually contains the medication. I looked through everything I brought with me one more time, and then the floodgates opened up. I couldn’t remember if I had been given something else, but I immediately assumed I put two Follistim-related boxes in the fridge and only took one out.

Someone brought us an envelope. My response was this:image1According to Jack, the minor envelope debacle “was so two crises ago.”

Jack recommended I call the nurse, but I decided to call my mother first. She was bound to be more rational than I was. (See photo above.) I told her I thought I left the medication in the fridge and she didn’t even hesitate before asking me if there was any way she could get into our apartment. She volunteered to drive an hour to Hoboken, get the medication, and then drive 2 hours to Poughkeepsie.

We (Jack) called the landlord who was very helpful and my mom and dad both went to Hoboken. At some point during the cocktail hour, I saw I had a voicemail from my mom. She had spent a long time looking through my fridge, took everything out and put it back in, and did not see any Follistim. She even looked in other places, but it was nowhere to be found. Jack checked the car that we had driven up in, but it wasn’t there either. I called the fertility place and an on-call nurse called me back. She asked if I checked everywhere because she couldn’t believe that the pharmacy wouldn’t have given me the medication. She told me to take the Menopur and she would call up a Metro Drugs pharmacy in the city and that I can pick it up on Sunday. She said it was early and that I shouldn’t worry too much about it. I worried a lot about it.

I mixed the medication and took the Menopur and we made it downstairs in time for the entrees to come out. In spite of all the craziness, we managed to enjoy ourselves.

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The next day we picked up the Follistim and I knew that there was absolutely no way that I had misplaced it. I would have remembered a giant silver package with an ice pack inside.

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Four Hours of FUN!!!

I lied. It was not super fun.

The first two hours were spent in the main building of the hospital. I got an echocardiogram (sonogram of my heart), and a pulmonary function test (blew into a tube).

Afterwards, I went for the PET scan. I had been gearing up for this. Beforehand, I had to eat a high protein, no sugar/carbohydrate diet and drink A LOT of water. My last meal was most of a brick of tofu, broccoli, mushrooms, and onions that I had all cooked in the oven on a sheet pan with some spices. (Not too bad, but I’m glad I can eat carbs again.)

They brought me into a room where they took a sample of my blood and then they injected the radioactive tracer. The liquid felt cold going in, which was a weird sensation. I was then given the option of a banana flavored barium sulfate drink or mixed berry one. I opted for the mixed berry, although the only berry mentioned in the ingredient list was the artificial blueberry flavoring. Nothing else could have possibly been misconstrued for a berry that could have made the flavor “mixed”. Disappointing.

(Actual photo taken seconds after the radioactive tracer was injected)

We had to wait around for an hour before I could even get the scan. My parents and I formed a mini book club and were reading The Rosie Project by Graeme Simsion to pass the time. Every now and then someone would start laughing and then had to tell the others what was so funny and we’d all start laughing, even if we had gotten to that part already.

Finally it was time. I had to lie down with my hands above my head and my ankles on a cushion. I was told that I had to keep completely still for the duration of the scan. At first, it wasn’t too bad. The machine moved back and forth a few times. Then it moved all the way back so that my head was sticking out the other side and it stopped. For a while. Suddenly, I was hyper aware of my foot.

Why did I leave my left foot like this? It would have been so much better if I had just turned it a little bit. Maybe I can move it reeeeally slowly until it’s in a better position. No, I don’t want to risk having to start this over. I’ll just suck it up. God, my foot feels so heavy.

I think one of my hairs is tickling my forehead. My head’s out of the machine now. Maybe I can just bring my hand down and fix it. Probably shouldn’t. I’d risk moving something else accidentally. I’ll try to think of something else.

There’s a little sign above that black box that says not to look at the laser. Would there be a red dot if the laser is on or is it invisible? Is the laser on? Should the laser be on?

Am I breathing too hard? Maybe I should try to breathe so that my chest doesn’t move. I think it’s moving even more now. How do actors do this when they’re pretending to be dead on TV? This is impossible.

I wish there was some music playing. Is someone playing “This Is Halloween” outside? No, that’s just me thinking about it. Wow, I can picture it perfectly in my head. That is amazing.

I just really want to get back to that book.

Every now and then the machine moved down a little bit and then waited there for a while, but that was about as entertaining as it got.