And that is the understatement of the century.
I am going to try my hand at describing what it is like (for me) to undergo chemotherapy. I will undoubtedly be unable to fully achieve this objective, but I really do want to try. I simply had no idea, and I really wish I had.
Ok, so my cancer treatment plan is 3 rounds of induction chemotherapy, surgery to remove my tumor/rebuild my tongue and the floor of my mouth, and then radiation treatment to really cure that goose.
I am currently a little more than halfway through my 1st of 3 steps. I am focusing only on this first step of chemo, as the others are equally terrifying and it is way too overwhelming to look beyond today right now.
My first chemo round was several weeks back when my mom and Cheri were with me for our first trip to MD Anderson in Houston. We extended our stay by a day to get in the chemo treatment and the follow-up shot that occurs 24 hours after.
I was all prepared with my positive attitude (sorta), and while I really hate needles, I did ok with this IV (I am a hard stick they tell me and it is hard to find my veins).
This first time took over 10 hours. That is not a typo. They have to give me fluids between all the medicines and since it was the first one and they were being really aggressive, it took over 10 hours to inject me with all the different medicines necessary. I slept for most of it since part of what they gave me was Benadryl, and my poor mom was a trooper with her iPad. I had to pee like a million times and had to keep taking the IV pole down the hall with me to the bathroom. It is hard to pee when you have an IV pumping into your arm.
Anyway, we survived, and went home really, really late that night to Sharin's house. The next day, we went back and I got my follow-up shot 24 hours later. Then, we headed home for real to Mississippi and Tennessee, respectively.
Now, I was told there would be side effects. I was given both a booklet and individual packets for my different medications. I spoke directly to a doctor and a pharmacist about them. I was told I would be tired, nauseous, have muscle fatigue, get bad acne, lose my hair, have possible hand and feet tingling, etc. Cool. I was also told some people are energized by chemo if their tumors respond, and that there is really no predicting side effects for different people.
Now, let's recall that at this time, my tumor was huge in my mouth. Like huge. I was eating only pureed soup at this point for weeks and had been losing weight already. My tumor was bleeding regularly (clots, so gross), and it was horrible.
I arrive home from MD Anderson after 2 weeks of being gone, and all I can think is "oh my God, I need my bed." Not, let me hug my beautiful children and husband. I need bed. Now.
I fell into bed and did not move for I don't even know how long. Chemo sneaks up on you and apparently tends to be the worst on days 3-5. It is quite tricky how it leaves you alone for 2 days, isn't it? Lulls you into a little belief that you are fine and then BAM!
I found myself in bed with no energy, no will to live, no will to sit up, no ability to move, and constant spit.
Yes, spit. This, I was not warned about.
Since my tumor is in my mouth, when the chemo attacked it (yay - good thing!), it had to react and it reacted by creating thick mucus-y discharge that KEPT COMING out of my mouth. Constantly. It was so disgusting and if I swallowed it I felt nauseous, but I literally went through 2 boxes of kleenex spitting it out and I wiped my lips into oblivion. Seriously. I lost my bottom lip. I am not joking, It was over a week before it healed back properly.
But, that did not even matter because I had more serious issues at hand. Everyone kept telling me to drink and eat and stay hydrated. Cool. I will just do that while I cannot move and am nauseous and keep creating spit and have no lip anymore.
Basically, I tried, I really did. But, I am pretty sure I was severely dehydrated and constipated on top of it all. Brian took me to the ER in Oxford and I got fluids, was diagnosed with a UTI, and they tried to help my reflux (caused by serious constipation) by giving me something to swallow (dumb) and I vomited blood all over the hospital bed. It was fun. I felt worse when I got home from the ER.
So, our doc at MD Anderson said to get my butt back to Texas and they would sort me out. This sounds crazy in hindsight, but we were really scared and I was a total mess. We were on a plane the next day. I was wheeled through two airports in wheelchairs and given such amazing service by the crews at both locations, for the record. I was feeling like crap, but I do remember the kindness of all the people who went out of their way to help me.
So, Brian was now with me and his wonderful cousin Kendall happens to live in Houston and picked us up and took us straight to the ER.
Where I was immediately admitted and stayed for over a week.
Very long story short, I was dehydrated and could not eat because of my tumor going through its transformation thing. They decided to place a peg tube in my stomach and that way, no matter what, I can get hydration and nutrition even if I cannot orally eat or drink. I knew I was going to have to get one of these anyway later during the surgery part of this process, so I guess getting it early was not too horrible. I kind of felt like a failure, though. Like, I couldn't handle it. I had to talk to the social worker in the hospital multiple times before I finally started to let myself off the hook a bit. I want to handle this. I want to be the one who stands up to cancer and fights it down and says suck it. But, I was the one who was literally knocked to the ground and it was a hard pill to swallow for me.
But, I swallowed it, and once I stopped being so hard on myself, things slowly began to get a bit better. I got un-dehydrated and that helped the chemo finally work is way through my system. I got my tube and they taught us how to use it at home. I slowly got back on my feet and eventually got out of the hospital and rescheduled my next treatment to get back on track.
The good news of all of this was that the chemo was indeed working. My tumor is smaller (not hugely in surface area, but as far as bulging out of my tongue, that is pretty much gone). I can eat again (which makes this tube superfluous most of the time), and the doctor redid the formula for my treatment to give me a different combination of medicines that would not have such a strong side effect on me.
I have full chemo every 3 weeks and I get a "booster" dose in between. I had this booster before we left Houston again to head home.
Luckily, the booster side effects were mainly acne, a really bad taste in my mouth, and tiredness. No dying this time.
I went back for full round 2 this past week and I am not going to lie - I was nervous. It did not take 10 hours this time, more like 5 or 6, and Brian and I were on our way. Even the shot 24 hours later was easier to handle this time. I was feeling good.
We got back home to Mississippi, though, and all the sudden, I needed that bed again. Bed. It was all I could focus on the whole drive from the airport. Again, no kids or hugs or love. Bed.
And that is where I have been for the last 4 days.
And this is what I believe chemo to be, for me:
Absolute, utter exhaustion of the mind, body, and soul.
The first 2 days were the worst. I could eat and drink better this time since the spitting did not come back (thank God!!), and I had my tube, so we used that to make sure I was getting everything in and out properly. No dehydration - yay!!
The muscle fatigue is no joke. It would take me about 15 minutes to work up the energy to move my legs out from under the covers to even begin to sit up and contemplate walking to the bathroom. Like, moving my arms to move the covers off of my legs and then in turn move my legs into a sitting position. I would focus on this act for ages to get it done.
And then there was the crying. Poor Brian. I cannot say enough how he is a saint. I could not handle anything that put me into sensory overload - noises, lights, smells, touch, etc. He catered to my every whim, and I love him. The random crying I think bothered him the most, though, and I don't blame him. I cried about everything - why did I get cancer, I am so sorry for being crazy, the blanket hurts my leg, I don't have a desire to see the kids, I miss the kids, I hate this, my stomach hurts, etc. All the time. So embarrassing, and yet 100% out of my control. Ugh. Awful.
So here we are. I am now past the worst of my 2nd round of chemo. I am not 100%, but today I put on a dress and makeup and Brian took me to the Square for lunch. I spent most of the afternoon in bed since that was a lot of energy, but my head is clear and I can walk and do things as needed now. I have reconnected with the kids (I still need to work on some of that...), and I am alive to tell the tale.
I leave tomorrow for a quick trip to Houston for my booster (hopefully it will be easy once again), and then I still have one more round of chemo waiting for me on September 29th. I am not going to lie - I am terrified to go through 3 days of crap like that again, but it was infinitely more bearable the second time, so I will stock up on more Hulu and Netflix movies and books and do what I can. Hopefully, my tumor will continue to respond, at least a bit, and this 3rd round will indeed be the last and we can move on to the surgery part of this whole fun process. :)