2am. The Ongoing Battle

I have been in some serious, and super unhealthy, denial for quite a while regarding my cancer.

I have advanced cancer.

Even further, I have stage IV cancer.

I have a primary diagnosis of stage 1A breast cancer, that I am now cancer free of. Best. Feeling. Ever.

I also have a secondary cancer diagnosis of stage IV endometrial carcinoma, that I am also cancer free of. Better. Feeling.

But why does that mean end of life? Why does every google search for stage IV cancer survivorship result in the 5 Stages Of Death & Dying. Don’t get me wrong! There is incredible information on the topic and it’s super important to accept those Elizabeth Kubler-Ross’ stages for any “death” situation. End of marriage, end of friendship, loss of a pet, loss of a job. But don’t automatically assume that because I have stage IV cancer I am actively dying! I’m absolutely not! Everywhere I search, its being beat into my head that my life is over. F*ck you, it’s not the end of me, yet! Stop rushing me down a 6′ hole. It’s hard to keep fighting when everywhere I look, I’m being coached on how to deal with the end of my life. If those books and google searches came up with nothing but that sh*t thrown in the face of a newly diagnosed patient, you’d have a lot bigger mortality rate due to new fighters giving up.

I’m still coming to grips with having advanced cancer and the gravity of how huge and overwhelming the life-long treatment is to just keep me alive and free of disease. When I start the scans, tests, procedures, and so much more, just to figure out the next step to go, it’s horrible. I’m on my first bout on this advanced cancer “merry-go-round of nightmares” since admitting I’m not going back into active treatment, and it’s terrifying to think of how huge of an ever-changing entity. I don’t know which way to turn, how to deal with the magnitude of all this, or even where to find situation-specific help.

Where’s the book for me to help me navigate this journey? Where’s the comfort at 2am? Where is everyone when you know everything is just a bandaid to keep me alive for as long as possible? Why is everyone giving up on me?!?!?

It’s incredibly depressing and a spirit killer. I need to fight with everything I have to stay healthy and cancer free for as long as possible. Then, when it does come back…and if I’m going to be honest with myself, it will…how do I put that foot back on the path and find a completely new normal? Over and over again. I have so many of the books on dealing with chemo side effects, learning about what my next step is no matter what type of cancer, what to expect after a mastectomy, and ways to help me bounce back with anti-cancer diets and ways of eating and beating this bs. These are all wonderful resources, but it’s cutting out an ever growing group of survivors. The lifers. The survivors that are just that…surviving chronic cancer one stumbling foot at a time.

Don’t ignore stage IV. Don’t give up on us. Don’t inundate us with never ending cycle of information on preparing our bodies for the grave. And for f*ck sake, don’t tell me “there’s nothing else I can do”. That’s the quickest way to find yourself with a hard throat punch.

I’m not actively dying. Stop treating me like I am and give something I can actually use.

Raise A Glass, Raise A Finger…r

1 year ago today, I saw a gynecology oncologist after 20 years of remission. For that birthday, I received a stage 4 endometrial carcinoma diagnosis and a surgery scheduled for the following month.

From that day till today, my world has been turned upside down, shaken, and then was told to pick up the pieces and find that new normal. It’s been filled with 5 surgeries, 9 rounds of chemo, and more tests, scans, and procedures than I can count.

It has also been amazing! I’ve met so many new friends that have become like family. I’ve reconnected with friends from high school and they are still the raddest chicks in the world. Some tears but a lot more laughs. I’ve learned so much about myself and what I’m capable of. I refuse to mourn my life. Life’s way too short to sit and watch it go by and I’ve fought way too hard to keep this life going.

I never thought I could handle anything like this, especially on my own. I’m pretty stoked about that.

For this years birthday, I took that chance to keep the appointment with my oncologist and believe it would bring me good luck. It was great news that will set me on yet a new road. I truly believe it’ll be a better road. Today has been great so far, even with a trip to the infusion room! Cancer invaded so many aspects of my life in the past year and a half, but I’m not going to let that that stop me from moving forward and learning how to navigate this new normal.

Raise a glass and a finger. Here’s to 42!! 🎉🎉🎉

If tears are cleansing, I must be sterile…

*photo credit needed

I spent the last week crying. A lot. It wasn’t until this afternoon, after a very inspiring conversation, that I realized why. It’s been about 6 weeks since finding out I’m cancer free, but learning everything that’s needed to control stage 4 cancer is daunting, at best. Hormone therapy twice a week, monthly check ups and blood draws at medical oncology, exams every 3 months at gynecology oncology (starting next month, every 6 months, heeeyyyy), palliative intrathecal treatment, a laundry list of new meds…and a partridge in a pear tree. I even had my 2nd experience with “chemo coma”. 23 hours later I woke up feeling awful and very dehydrated.

My friend laid it out simply. “Own it. Don’t let it own you”. So, I gave it a voice. I cried over it. Then I beat its b*tch-ass in the ground. It was satisfying. Rewarding. Horrible and wonderful at the same time.

There’s so much information for newly diagnosed patients, patients just starting treatment, books on every type of cancer, how to fight chemobrain…and I bought every book on the subject and super stoked I did. But, now what? That’s where the extensive library slows dramatically. How do you move forward in your new normal? Harder question; how do you navigate those tricky waters as a stage 4 survivor? Very little. Harder still; all that, but add beating 2 cancers to the mix? There’s nothing that specific, but I’d be happy with just more information and guidance on chronic cancer. The hashtags #Stage4NeedsMore and #DontIgnoreStage4 are more accurate than I could have ever imagined. That, straight up sucks. A whole group of fighters and survivors cut out of the equation. Why? The medical profession giving up on the whole “one foot creeping too close to the grave” thing? Terminal cancer patients not worth *truly* going out on that limb? Not much use to “rearrange the deck chairs of a sinking ship”? Whatever the reason, being in the bottom end of this cancer soup has really hit me hard this last week. I just couldn’t give it a name. Today I did…

I call you out, traitorous body.

Then, I thought about it. Not just the way of thinking that you rush through and stuff down till another day. I *thought* about it. I came to grips with it. I took inventory of my *path* that was laid out in my skin like a Rand McNally map. The changes of the terrain of my body, inside and out. It destruction of dangerous roadways to make way for new, more inhabitable travels. The whole of the old scenic route gutted. This body suffered. A lot. A breast here, another there. Don’t forget the cuff of the lower cavity, bladder and bowels that were pieced back together and tucked in neatly behind a 10″ scar. An unnecessary and very large scar in lieu of 3 tiny 1″ scars. A scar that was the product of a wayward scalpel on a fairly new version of surgical technology that would make my debulking surgery less invasive and cut down on healing time. It would have been awesome had it happened like that, but that was the half full version of the process and not at all realistic. Not the time for that story…

After making all the mental tally marks, I started to see the beauty in the exposed road. It was…is new. It’s slow going and I’m not naive enough to think I’m able to rush though this process. For better or worse, this is my body. A new body. A new start. A new normal.

12:02am. 42nd year…

Btw, yes I’m aware of the bad pun in the title. My mind was taxed. It’s been a long day.

Pre-Birthday Reflections

I was planning on posting last night but I felt exceptionally whiny so I thought I should pass. I was feeling really down. I started a new med on Saturday and slept until Sunday evening. I could do without “chemo coma”. I felt awful and my head felt so thick. It’s my 42nd birthday tomorrow and I have my monthly oncology appointment as well, but this blood draw is to make sure my body can handle the new regimen I’m starting.

Tomorrow will also be one year since I was dx with stage 4 endometrial carcinoma. It was a shit birthday last year. But that was last year. I can’t base the rest of my life off of the “but last year…” and think things are going to keep spiraling. Last year is just that. I was also dx with breast cancer earlier that year and I owned that bad b*tch too. It’s a new year of life for me. Last year I didn’t think I’d make it to 41, let alone 42! I fought hard for this life. I’m still fighting and I will keep fighting. I’m sure the tears will be plentiful…hell, they’ve been flowing for weeks! This is the 2nd year I’ve given the finger to this disease. I’m not gonna stop now.

Everyone raise a glass or a finger tomorrow! Happy birthday, dammit!!