I’ve been thinking about how to write this post for a few days now. I couldn’t decide if I wanted to just make it a quick update or a long, very honest post about my latest visit to MD Anderson. Considering one of my main reasons in creating this blog was to possibly help others on their cancer journey, omitting things because of embarrassment or sadness or fear or any other reason would be a disservice to anyone who reads it for the unadulterated truth.

Caleb and I hopped on a plane headed for Houston on Wednesday afternoon. We arrived late in the evening and were welcomed back into the home of our friends, Gary and Margaret. I need to say how truly thankful we are that we were brought together. Being able to visit/stay with friends while in Texas helps to alleviate some of the anxiety of being away from home and waiting for the results from each scan.

I arrived at the radiology center on Thursday morning for my CT scan while Caleb headed off to the blood donation center. He does his best to do so each time we are in Houston. After waiting two hours for the scan, I headed off to the lab for bloodwork. Shortly after leaving the hospital in search of caffeine and food (I have to fast for the scan), I received a call from a nurse in the sarcoma clinic. She informed me that most of my blood levels looked fine. However, my platelets were incredibly low and they’d like to check them again the next day to make sure they weren’t still decreasing. Now, the last time my platelets were checked was a week prior (three days after receiving chemotherapy). At that time, they were 55; the normal range is approximately 120-400. My platelets on Thursday were only 30. The doctor was concerned that I may need a transfusion to get me home if the didn’t start to go up. If platelets dip down to 10 or less, a person is at risk for spontaneous internal bleeding (including in the brain). I shudder to think what happened between Friday and this past Thursday.

Thankfully, when tested the next morning, they had increased to 42. However, we realized that I’m going to need more frequent monitoring if my platelets were going to laze about like that.

On Thursday afternoon, we headed to the sarcoma clinic to see Dr. Ravi. I expected him to make a comment or joke about the fact that my hair hadn’t yet (completely) fallen out. It has thinned out a lot but the casual observer wouldn’t really notice any difference. However, instead, he made a joke about how Caleb must be doing all the work around the house and waiting on me. At the time, I did not understand what he was talking at all but I laughed out of politeness (or maybe just to hide my confusion). His meaning became quite clear a few minutes later.

He informed us that my CT scan was clear; there was no evidence of any cancer in my body. My lungs, however, showed signs of atelectasis. The bottom portion of both my lungs appeared to not be inflating completely. Dr. Ravi said based on that and my considerable weight gain, I must not be moving enough. I was considerably taken aback. I know I had gained weight but I was not expecting him to say that, nor was I expecting him to talk about it for what felt like ages.

Now, if you’ve read my previous posts, you’ll know that I’ve been struggling with the amount of weight I’ve gained since beginning treatment in October. Other people undergoing treatment had warned me about the likelihood of it happening. I’ve been really trying to cope with it since March when I noticed that my clothes were starting to become a bit snug and uncomfortable. I’ve done what I can to make sure I wasn’t eating only unhealthy things. It wasn’t always easy considering the nausea and the way the chemo changes the way everything tastes.

Dr. Ravi asked about my eating habits and I informed him that I eat less than I used to (which honestly wasn’t a lot before) because food just doesn’t taste good most days. He nodded and agreed that everything probably tastes like cardboard because of the chemo. He said that I should continue eating in much the same way I do now, making sure I get the calories in. But he also said that I need to start doing more, moving more, getting off of the couch more. I tried to tell him that, apart from the few days after chemo, I AM moving. I still take care of the kids, the dishes, the laundry. I still cook meals and move furniture and vacuum. I honestly feel as though I’ve been moving more than I should in the last couple of months. My family and friends tell me I should take it easy more. But he didn’t agree. I could feel the shame and embarrassment bubble up and threaten to overflow as he continued. He told me I should start exercising, join a gym. The doctor even suggested swapping the central line in my arm for a port so that I can go swimming at the Y since it’ll be easier on my (out of shape) body. After that, I went very quiet and spent the rest of the appointment holding back the tears I could feel welling up.

He and Caleb discussed the low platelets and came up with a plan if they continued to be a problem. Instead of continually delaying doses, Dr. Ravi said we could drop the second chemo drug (docetaxel) and just continue with the gemcitabine for the remaining cycles. He also said, just as we were leaving, that immunotherapy may be an option for me later on if he decided it was necessary. Previously, due to my autoimmune conditions, the doctor said it wasn’t an option as it would just aggravate my symptoms. They’ve begun to treat patients like me which is good news as it gives us other options if they’re needed.

I was able to make it to the end of the hallway before the waterworks unleashed. I don’t know why I felt so ashamed, guilty even. I felt like I was doing everything right, everything I could. I was getting my treatments, fighting the cancer, all while still taking care of my children and my house and myself. I was (am?) even considering going back to work. But I feel like my body is betraying me again. Or I’ve been lying to myself and I’m not actually doing enough. Did I actually make my lungs unhealthy because I should be doing more? It’s hard to feel like you can’t get anything right or that what you’re doing just isn’t enough.

It took me a few hours to break out of the mood the appointment put me in. I was able to talk through everything with Caleb. I realize that Dr. Ravi was coming from a good place. He doesn’t want me to fall into what he called the “chemo lull” that people often do. He wants me to get through treatment and be able to resume life much as I was before the diagnosis. What good is getting better if you end up too heavy or too unhealthy in other ways to enjoy the life you fought so hard for? I understand what he’s saying. What I don’t understand is how he discounted all the other reasons for the weight gain, how he didn’t seem to believe me when I said I’m not a couch potato but much the opposite. I may not be out running marathons or spending hours in the gym; I’m sure if I pushed myself more I could probably schedule some stereotypical cardio into my days. But I am not lazy and in no way am I just sitting back and waiting for all this to be over.

I still feel some of that shame that washed over me on Friday. I was feeling it before then but was able to ignore it for the most part. Looking in the mirror is a little harder now, especially knowing that I don’t look like your typical cancer patient right now. People often tell me how “healthy” or “good” I look. I do my best to act normal and not let the cancer change who I am. So I smile and laugh and enjoy each day as much as I can.

But I’m still struggling inside. Today I woke up feeling down and nothing seemed to go right. I found myself looking at photos from “BEFORE” and just wishing that this had never happened to me. I wish this past year was nothing but a bad dream. So I sat on my bedroom floor and just let myself cry. Because, sometimes, nothing else helps. Most days I’m stronger than the struggle and the sadness. Some days I’m not. And that’s okay.

This is definitely one of my most open and raw posts. I don’t know what, if anything, you can glean from this long ramble of a post. Maybe the lesson is that only you can truly know yourself and what you’re capable of; even doctors can miss the forest for the trees. Or maybe that’s not it at all. Maybe it’s just a girl with cancer laying out some raw truths so that she can pick herself up by her bootstraps and move on. Whatever it is, thanks for reading.

Hiding behind the shame or the guilt wasn’t going to do me any good. For a cancer patient, I’d say I’m doing pretty darn well. So just know, if you’re struggling, you’re not the only one. And it won’t last forever. Bad days happen but better ones are around the corner.