Cancer Purgatory: Not Out of the Woods Quite Yet

Last night I was all prepared to write an upbeat post about how my CA 125 levels dropped and how well I’m doing and feeling. I was going to knock you on your ass with positive vibes and post fun meme’s like this (inspired by Tony at http://effleukemia.com):

terminalcancer

Today is not that kind of post so bear with me.

This morning I started my last round of chemo. I had a blood test yesterday to check my CBC (Complete Blood Count) and CA 125. The CA 125 is what I was really interested in. Because I had made such a significant drop last time I was really thinking that my numbers would have dropped below 21. I was ready to shout good news from the rooftops until my chemo nurse told me that my CA 125 was 42. The only words I could muster were “Wait, that’s up not down?” Way to go genius (when I say things like this I am shocked that I was awarded a masters degree). I just couldn’t effing believe that after EVERYTHING I’ve been through and how well I’ve been feeling that my numbers didn’t reflect that. Of course I cried because that’s what I do (I’d make a killing bottling my tears if there were a market for it).

My chemo nurse Sheila sat down and hugged me. She reassured me that this is a very very very small jump and she would tell me if she was concerned. She said we should be worried if my numbers double or triple but a jump like this is likely a result of inflammation in the body. Basically this is what a few of my nurses and some other medical professionals that were consulted think: Fluid retention in the legs causes inflammation in the body,inflammation impacts CA 125, thus raised numbers. The CA 125 is only ONE tool used to measure progress and is incredibly variable and different from person to person (examples: zero doesn’t mean cancer free, and normal for one person could be 21 while normal for another person could be 5). My trends over time are good so I have that in my favor. So yes, I get it, this isn’t the end of the world. So no big deal right? Ehhhh kind of. I’m still grappling with the news because once again my expectation clashed with the reality of the situation.

Cancer is a very gray disease. There are no black and white quick answers when it comes to cancer. When you live within the gray the uncertainty can be incredibly anxiety provoking. My anxiety is not overwhelming or overpowering. It does not prevent me from doing my job or exercising or anything like that. There are days from time to time where the lingering uncertainties turn into fear. Facing your own mortality is a process. Though I am so appreciative of the support and reassurance from friends and family, it is important to me to acknowledge the fear as it is a very real and raw part of this experience. I am in a position where I am re-learning how to trust my body. Due to the lack of absolutes involved in my disease, all I can do is blindly trust my body. I think we can all agree that it is a difficult task to trust a person that tried to kill you. The reality of the CA125 elevation is minor, I acknowledge this but it’s also important to think about the emotional impact this has on someone with this disease. At this time I have nothing beside my blood tests to gauge how I am responding to treatment. I have no other peace of mind. I acknowledge that the CA125 is only one tool and the CT scan will be more accurate but I’m left with nothing else to give me any peace of mind for a couple weeks. Again, I just need to trust the process.

So where do I stand? I mean, I’m kind of okay. I’m not cancer free nor can I say that I’m cancer free for 5 years. This is a stage that I fondly refer to as Cancer Purgatory. I’m better than I was before but not quite where I hope to be. Cancer Purgatory is another chapter with its own intricacies. Just because chemo is over or almost over, sometime people just assume you’re okay and a shift in support occurs. This is a hard one to explain because of course you just want people to treat you normally because, you’re still you. The twist is that you’re still you but you’ve changed. You need a different kind of support than you did at the beginning of the journey. The truth of the matter is that you will never really feel totally “okay”. You will have strings of great days and weeks but in the back of your mind you have to come to terms with the fact that this disease is part of you and could potentially affect you in the future. I don’t want you to think that I’m being a Debbie Downer because I can assure you that I’ve been pretty darn positive through this whole journey and still am. Accepting these possibilities, in my opinion, is quite different than being negative. When chemo ends I will still be monitored but not as frequently as I am now, that takes away from peace of mind, especially when aftercare ends. Every headache, pain, bump, rash is harder to brush off now that you know that your body is capable of “turning on you”. I’m anticipating the response to this being “don’t go there now”, “take it one day at a time”, “cool your jets brah”, etc. Tell me that all you want, I’ll tell myself that all I want but the fear is very real and must be dealt with.

On a more positive note…

That being said I am forever lucky to have such a tight support system. I talk about this all the time but it is important to acknowledge the people that are in it for the long haul with you. My family, roommate/”husband”, friends, coworkers, and strangers have gone out of their way to make me feel at peace with my situation. I wouldn’t be doing as well as I am if I was doing this in isolation.

Most recently I have found energy and joy in exercise (man I missed being in the gym!). My trainer Matt is an awesome cheerleader and I am leaps and bounds ahead of where we both thought I would be physically. That is encouraging! We decided that our personal challenge is to be doing one handed push ups by the end of the summer. I’ll post a progression video when we get there. I’m committed to this. I also cannot wait until my leg gets strong enough to run again. Brian Eastman- I will be “danger running” with you before you know it :).

Emotionally I have found strength and understanding through a few people that I never expected who I do not even know in real life. I have found my way to two people battling Leukemia and reading about and corresponding with both of these gentlemen have made me feel…understood? Our situations are so drastically different yet there is enough overlap where I feel like we just get each other. Talking to other young people with cancer is pretty helpful. I benefit from that far more than talking to a 60 year old  woman that has the same type of cancer as me. Having cancer at any age is beyond difficult but being young adds different complications. Talking to other twenty-somethings and young professionals who just “get it” is really beneficial. I should get more involved with the Stupid Cancer organization. It’s an organization for young people with all types of cancers. I missed the Boston conference a few weeks ago but hopefully there will be other opportunities to make connections with this group.

Other shout outs….

Many of you were very interested in my eyelash/eyebrow situation. Thank you so so much to Carly, Jes, and the woman from Florida that I’ve never met for sending brow makeup false lashes, glue and gift cards for falsies! I cannot wait to use them and bat those baby blues this weekend. (Shocki and Gomez- expect pictures). Thank you to everyone else that reassured me that I look okay no matter what.

Most importantly:

I am praying for Boston. Living where I do, much like the Sandy Hook Shooting, this hits close to home in so many ways. I have many friends living and working in that area and I am incredibly thankful that they are safe. I hope all of your loved ones are safe as well. That being said, there are many people that need help. Many people whose lives are forever changed. I want to help in some way. I don’t think donating blood is an option for me at this time so if anyone knows of a credible fund to donate to please let me know.

Despite the heart wrenching nature of this tragedy, it is also inspiring to see the kindness that has permeated through the city and beyond. Stories of runners finishing the race then running to Mass General to give blood. Strangers allowing runners and spectators into their homes for water , food and to charge cell phones. First responders quickly intervening to protect and reassure terrified victims. A flood of kindness stemming from incomprehensible circumstances. Community will help us heal through tragedy.

I appreciated this video from Stephen Colbert as he says it best with compassion and humor:

Last but not least…


DAFFODILS ARE FINALLY OUT!!!! They have a pretty short window to grow so seeing them is always exciting. Hands down my favorite flower of all time. 

daffodils

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6 thoughts on “Cancer Purgatory: Not Out of the Woods Quite Yet

  1. Liked for the shout out, but sad that you had to have a shitty day. Sometimes a day is just…a day, and it’s best left at that.

    Thanks for sharing, even though you were disappointed by the results. I hope the CT scan gives you better news.

  2. Really enjoyed meeting you today, Jessica. I couldn’t have asked for a better roommate. All the best as you begin your next chapter. And sorry we hogged all the visitor chairs.

    • Ruth,

      It was an honor to meet both you and your husband. Thanks for being wonderful roommates as well! I’m sorry you had to be there for as long as you did. Wishing you the very best!

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