I apologize I haven’t blogged for a week. To be honest, it’s because there really hasn’t been too much news flowing my way for me to relay and as the saying goes “no news is good news.” On the 12 days between treatment it’s really a waiting game and me trying to stay busy and focused. The most difficult thing with cancer is no matter what you are doing, watching, working on, it never leaves your mind… ever. The important thing is keeping my thoughts in a positive and motivated light, which I am able to do for the most part. My amazing support group which I have come to call “My Army” otherwise known as you, definitely makes that easier.
Anyway, the main reason for the creation of this website was to help my army stay updated, educated and most of all know that I’m happy. So I figured today would be a good day to answer another really common question people have for me: ”What does chemo feel like?” Well, I can tell you that it is most certainly different for everyone and definitely varies depending on the type of cancer you have and chemotherapy drugs you are being administered. I also think the best way to describe it is to walk you through the treatment.
Every other Monday morning at 7 am I walk into the Mass General Yawkey building and take the elevator up to the 8th floor. I check in at the front desk with Mohammadi (one of the nicest ladies I have ever met) and get my hospital bracelet for the day. I take a seat in the waiting room, which is usually pretty quiet at 7am and wait to be called in for my vitals. If I look to my left, there is an awesome view of beacon hill and the Boston city skyline. I get called in for my vitals which includes, blood pressure, weight and pulse and then return to the waiting room. Shortly after, I’m called in to have my port accessed and blood work done by one of my infusion nurse’s Nikki and sent on my way to meet with the doctor.
At 8 am I have an appointment downstairs on the 7th floor with my physician Dr. Ryan and my clinical nurse Terri. They review how I felt the previous two weeks and then go over my blood work or complete blood count (CBC). My blood is an extremely important gauge to my health and continued treatment. The CBC measure’s levels in my blood called markers. The most important markers are white blood cells, red blood cells, hemoglobin, platelets and absolute neutrophils. There is a floor to each of those markers and if the level of any of those markers drops below the floor that days chemo cycle is to be pushed back until my blood levels are healthy enough to continue. For example, after my first week of chemo my absolute neutrophil level dropped from 2.96 to 1.37, if that level was below 1 my second chemo cycle would have been pushed back. There is also a blood test which monitors Carcinoembryonic Antigen (CEA) which is a tumor marker. They will test me before the next cycle to see if the original level of CEA has dropped in my blood. A drop would be an indication that the tumors have shrank (I think).
At 9:00am I head on back upstairs to the infusion center’s waiting room. By this point the place is packed with oncology patients, each wearing their own “armor” and ready for the next battle in this long war. Their visible scars, multi-colored bandanas, bracelets, chemo pump bags and motivation t-shirts identify their specific disease yet bind us together as one, on the front line for another surge against our common enemy. As the nurse at the front calls “Anthony” and I stand up to go in to receive my treatment, shock appears in many of the others faces. Their thoughts: “For sure this “kid” is here to support one of his parents sitting next to him, not the patient himself.” My acknowledging smile to the role call confirms their shock but its intention is to put the room at ease and show my strength.
I am escorted into the infusion room where my chemo appointment can begin. I sit back and relax on my lazy boy recliner and prepare to be plugged into the matrix. My nurse Sheila enters the room with a big pretty smile as usual and greets the family and I. She is happy, positive but always concerned, everything I could ever ask for in a nurse. Before the treatment can start I am given a shot glass full of pills containing my anti-nausea medication. Combined with some water, I throw the shot back with one quick gulp, and reminisce of my college glory days. To begin the chemotherapy, I am hooked up to the first of the drugs in my FOLXFOX Avastin program: Avastin. As the medication drips into my body for 10 minutes I can feel the cool liquid enter into my chest and spread through my veins. After the last drip of Avastin enters my veins I am promptly disconnected and hooked up to two more drugs: Oxaliplatin (chemo drug) and Leucovorin (a calcium.) As the drugs slowly drip into my body over a two hour period, there really isn’t much I feel…. except constantly having to run to the bathroom to pee. With so much liquid flowing into my veins it is processed quickly by the liver and kidneys and quickly diverted to the bladder. I try to imagine that the liquid coming out of me is actually microscopic bits of the tumors, slowly draining the cancer out of my body. I will say it is definitely a humbling experience having to unplug and cart my chemo drips hung on an IV pole to and from the bathroom over and over again. Mass General is an amazing place, they have volunteers constantly walking by offering food, drinks and snacks as well as providing multiple amenities to make your time there very comfortable. When the drip bags have finally run dry Sheila returns and moves me onto the final and longest stage of my chemo cycle. A syringe or “push” of 5-FU is quickly connected to the port and injected before I am connected to my 5-FU pump and favorite fashion accessory for the next 46 hours. A wish of good luck, pat on the back and I am on my way home.
Generally speaking, the first 48 hours of chemo treatment are not too bad. Nausea is usually at a minimum as it is controlled by my anti-nausea medication. The only problem is that the anti-nausea drugs just so happens to be a constipating medication, and if you remember my post about the evil beavers, I am definitely giving them some material to build with! Because of this, cramps, bloating and nausea can be sudden, painful and exhausting. I have to carefully balance my diet, stool softeners, milk of magnesia and my medications to the correct level or I risk falling in one direction. In my case, both directions are bad. On one hand getting blocked is dangerous and can cause major complications to knock my treatments off track, on the other hand diarrhea is a major concern because my body may lose too much water and not properly digest a sufficient amount of nutrients to stay healthy. Hours 49-120 is when I really seem to feel the grunt of it. Some people say it feels like your coming down with the flu and I guess, I would have to agree with them. I’d say my body just feels off and really fatigued.
The drug Oxaliplatin causes some other really noticeable side effects in relation to how my senses respond, specifically to cold and pressure. I can not touch, drink or have any body part be exposed to an object below room temperature, as it causes what the doctors described as a “pins and needles” sensation. The colder the surface of the object the more painful the sensation is and the longer it lasts. I absentmindedly grabbed a bag of frozen vegetables the other day(about 5 days after treatment,) only to rip my hand back in searing pain expecting there to be a knife through my palm. Of course there was no knife, but the so called “pins and needles” may be a bit of an understatement and the sensation lasted for a while. This same feeling applies to eating and drinking, everything needs to be warm….that means warm water, warm salad, warm protein shakes, warm fruit, warm milk…. yuck, just the way I like it on a hot summer day! Other oxaliplatin side effects I can only describe as painful reactions to senses I haven’t used in a while. For example, when I eat, the first four or five bites feel like I am chewing on razor blades. When I read one of your awesome cards, emails or comments and my eyes start to water, the tears almost feel like acid oozing out of my tear ducts. (Please keep them coming by the way, the positive far outweighs the negatives.) And when I try to open a bottle, pull open a heavy window, or play rough with the dogs, any significant amount of pressure can send a shockwave through my fingers.
Every cycle the side effects will be a little more severe and last a little longer, but after the 5th day things usually start feeling better and life gets back to normal. I don’t know what you are all thinking, whether this sounds like heaven or hell. What I will tell you, is that to me…. it’s not that bad, I welcome the pain. Pain let’s you know you’re still fighting, it let’s you know you’re still alive. The side effects may make me feel shitty for a few days, but I can guarantee you it is not nearly as bad as what those little fuckers growing…..I mean, dying in my colon and liver are feeling.
Much Love – Teej
p.s. Feel free to send me any questions, comments or topics. They are great thought provokers and may be inspiration for my next blog.