2am – Flat Fashion Inspiration

Probably a hundred years ago, I used to alter my clothes. No shirt was safe from my scissors and most skirts and pants were bound (see what I did there??) to be adorned with bondage straps, zippers, and patches. I haven’t had the desire to pick up the shears in about 15 years. I have been severely depressed for years due to a bad marriage, health problems, family drama etc etc… Now, after a year and a half of dealing with breast and endometrial cancer, I have finally found a way to bring a bit of the old me back when it comes to my style.

All it took was a mastectomy and a friend. We clicked immediately. The first time we met, she brought a custom bag full of clothes and jewelry for me and I had a stack of clothes for her. She brought back that old spark to create. To take the boring and make it badass. This time I’m customizing clothes for my new body. It’s turning out better than it ever has! I’ve climbed and mastered another mountain in this cancer terrain.

For a while, I lost myself. Subconsciously, I started to get older in my mind, which reflected on the outside. It may seem incredibly vain of me, but I’m no different from anyone else. Most people take pride in themselves and how they look. They don’t want to go out of the house if their hair isn’t done or if they don’t have makeup on. I feel the same way, but I gave up that part of myself. I guess I fit myself into the “cancer patient look” box. It has taken lone enough for me to notice this “look”, but it has to stop. Laying here, looking at my IV beside my bed at home, it’s hard to find anything creative about this situation, but I’m doing me best to find it.

It’s still a work in progress.

I’ve never been like everyone else when it comes to style and I need to remind myself I don’t have to give it up because of life changes. These changes are an opportunity to have internal growth. To stand up and say, “I’m still me. Nothing is going to take that away!” I’m still working on loving my new body and accepting my “new normal”. It’s difficult right now, but I have pulled myself through worse things. It has only been 8 months since my mastectomy. Wow. It feels like it has been years! I just have to remind myself that it’ll get easier. I’ve never been good at waiting or being patient. I guess there’s not much that is going to change that little flaw.

One step at a time.

Shots! Shots! Chemo Shots!

Last week was pretty rad! I turned 42, I got to see friends, I felt good! Then Thursday decided to be a dick.

I woke up more tired than usual and was a bit chilly. My face felt warm but nothing crazy. My temperature was low grade. Only 99.1 Then it started making its ascent. I tried every trick I knew…cool cap, wet cloths, wetting my hair, light clothing…and nothing would get rid of it completely. I thought maybe my port was infected or one of my mastectomy sites needed a re-excision again. I contacted my oncologist and made an appointment for the next day. I got antibiotics and was off for a Labor Day BBQ!

Later that day, the lymph nodes in the right side of my neck started swelling. The headache was a bonus. I was already on antibiotics and not an emergency, so I figured an ER trip was silly.

I just got back from the doctor who is suspecting some sort of blood infection. After filling 4 bottles (yes bottles, not vials) and munching on Sees candy, I was on my merry little way.

Now the fear is setting in. I have at least a week until the results are in.

I’m so tired of cancer scares!!!

It’s All About The Accessories

There’s an infection somewhere, but not in my port. My fever is gone for now, but I have blisters on my tongue and my lips are crazy dry. She told me they look like leather haha My oncologist said to rest for a few days, avoid crowds, lots of fluids, Tylenol, and she told me to call her if my fever spikes again. Also, treatment is still on for the 6th.

She checked my mastectomy scars and said how beautifully the sites were healing after the re-excision. I’m so happy the infection isn’t coming from that again!

At least I have a fabulous hat!

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.