Back to the Hospital We Go aka Pre-Chemo Adventures

We have spent the past week reading and preparing for chemo. Part of that was mental preparation and part of it was working with physical realities, such as getting my tattoo before killing off my immune system and getting my port installed. A port is installed in your chest in order to allow techs to simply plug you in, instead of having the start a new i.v. with every visit. This preserves your veins when you are facing a long series of treatments, like I am. It also is easier for all involved.

At first I was not thrilled at the idea of having something implanted in me. It reminded me too much of my father’s pacemaker, something that had always creeped me out. Once the doctor’s assistant explained how it worked and how easy it would make things for me, I got on board with it. Yesterday I arrived at the hospital at 5:30am in order to have the procedure done. As always, my doctor was awesome and reassured me that it was a very minor surgery in comparison with my hysterectomy. It was going to be a 45 minute procedure and everything was going to over in a jiff.

Checking in at the hospital.

More paperwork.

Before his arrival, I had been prepped and left waiting a little bit too long. I’m still not sure why it took longer than it was supposed to, but it gave me just enough time to let a few negative thoughts creep in. I was lying in the bed, feeling the itch and burn from the anti-bacterial wipes you have to use on your entire body before you put on your gown and they do all of your vitals. I kept feeling the i.v. placed in the top of my hand. It is one of my least favorite sensations, even though I know it is there for my own good and is temporary. I started to think about everything that lies ahead and yes, it started to mess with me.

Getting another i.v.

The previous day I had been through acupuncture, hypnosis (aka guided meditation and positive reinforcement), and had a relaxing massage. I had been feeling relaxed and at peace with everything and all it took was an extra hour or so of waiting in that bed, burning and uncomfortable, to lead me down the path of feeling a little bit melancholy. Fortunately, it didn’t hang around long. Sam and I just used the time to talk about how everything was going to be okay and how fortunate we are to be going into this with what we have. The point is, yes, I can write all of the funny and inspirational things I want to, but negative thoughts and feelings will sneak in. I’m not impervious to feeling down or upset. The difference is in being able to redirect yourself. In my mind, it’s the only way to make it through obstacles in life without getting caught in a vicious cycle of pity parties and depressing thoughts.

Waiting.

Once they finally came to get me, I was sedated with a drug that they were able to wake me easily from. As with my last surgery, I only remember being rolled down the hallway into the surgical suite and then being told I was being given something to help me relax as they helped me scoot onto the operating table. Boom, I was out. Last time I could see the robotics and was on a molded table, this time it was a simple gurney-like table. I woke up, realizing that it was over, and was wheeled back to my prep room to wake up, instead of spending an hour or so in recovery like last time. It was an odd sensation.

Sam was there and I could really feel the pain. My neck felt as if someone was stabbing my in my jugular. I instantly wanted pain meds. It’s funny when you consider last time I’d had a major surgery and only wanted a minor amount of pain meds when things got painful. This was a different kind of pain. I also think it is because the other pain was a lot like typical cramping, which I’d had a lifetime of experience dealing with, while this was a more intense pain that I was not accustomed to feeling. I should also say that I don’t do neck pain or headaches well. I admit it.

Sam and I.

The nurse gave me oxycodone and I waited for it to kick in. I lay there hurting and Sam held my hand. At least I knew it was over and things would only get better after that. I was sent home after an hour or so and other than the tape holding everything in place and the pain, I managed to move decently well. I found out that they have to make an incision in your neck in order to feed the line through, and that was what was hurting so badly. I looked in the mirror and sighed. I could see what they’d done and my job was to figure out ways to stay as comfortable as possible.

Can’t wait to go home and not be looking at this anymore.

I spent the rest of the day lying in bed, watching Bob’s Burgers and dreaming about the pizza we were going to have as a reward for dinner. I had finally gotten over my nausea and food was tasting good again. I wanted to take advantage of it while I could. Everything I’ve heard/read about chemo tells tales of people losing their sense of taste or having a metallic aftertaste that won’t go away. Add to that the very real probability of some serious nausea and stomach upset and you’ll understand why I was excited to eat pizza while it would still be delicious and satisfying. And it was.

We had to complete an on-line chemo class and then it was time to get some rest before our 8:30am check in for chemo in the morning. At least the oxycodone, pizza, and knowledge that the surgery was over and I just had to go and sit while they pumped me full of drugs helped me to relax and fall asleep. Two sleep deprived nights in a row would have only led to more negative thoughts and crabbiness. Fortunately, that didn’t happen. Sleep was my friend and once again, I found myself being thankful for the little things. I also found myself finding solace in the words of Maya Angelou, a woman I have long admired and who had passed away that same day.

“I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I’ve learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I’ve learned that regardless of your relationship with your parents, you’ll miss them when they’re gone from your life. I’ve learned that making a “living” is not the same thing as making a “life.” I’ve learned that life sometimes gives you a second chance. I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back. I’ve learned that whenever I decide something with an open heart, I usually make the right decision. I’ve learned that even when I have pains, I don’t have to be one. I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I’ve learned that I still have a lot to learn. I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

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Getting Ready for the Inevitable

After our last visit with my oncologist, we knew we would be preparing to start 18-weeks of chemotherapy. Yes, I did finally pick up the report in the folder and both Sam and I read through it. The good news appears to be that the cells that had spread were the not-as-aggressive variety. In the end, it doesn’t matter, we have to kill off what remains and I am finally fine with it. I’m as ready to do this as I can be. As I’ve said before, my game plan has been to be as prepared as possible for anything and everything that can possibly happen in order to feel okay with moving forward during this process. We did it with my surgery and now we have been doing it with chemo.

We have read about all possible side-affects and have also prepared a nutrition plan to keep me healthy while we kill off the remaining cancer cells. We have healing oils from specific plants and natural remedies for dealing with nausea and appetite issues. This week I am starting acupuncture and cancer hypnosis. A friend is going to work out any kinks in my muscles tomorrow from my post-surgery days of sitting around in order to get me ready for sitting during chemo. We have fundraising efforts happening to help us during this time when I most likely will not be able to go back to work. We have support everywhere we turn and it makes my job of being the patient so much more doable.

 When I found out that I was starting chemo in a week I told the nurse at the oncology clinic that I had wanted to get an inspirational tattoo before starting chemo. She told me to get it done before chemo or I would have to forget about it until chemo was over. This is because we will be killing off my immune system and I won’t be able to take any extra risks for infection during that time. I wrote to my friend Kirsten Holliday who works out of Wonderland Tattoo in Portland, Oregon and told her we had a week to make it happen. She is normally booked out 2 months ahead of time and it just happened that she could get me in yesterday morning. I gave her reference photos and trusted her to do the rest.

When I received my cancer diagnosis, I could think of no better inspiration for staying positive and brave than Piglet. Piglet was rescued through Panda Paws Rescue after being used as a bait dog for dog fighting. What that means is that her teeth were filed down, her ears cut off, and she was bound in order to keep her from fighting back. She was used as bait for the aggressive dogs to attack, repeatedly. She had other injuries, including having had part of her lip torn off and a limp from a broken leg that had never healed properly. After experiencing that life one would think that she would be mean, but she isn’t. She is a sweet love bug who is an excellent representative for her breed. Piglet was adopted into the perfect home and now lives a sweet life where she is safe and loved and happy. 

I was fortunate enough to spend one afternoon with Piglet while she was at Panda Paws and I instantly loved her. She also was recently diagnosed with 2 cancerous spots, which were successfully removed and she is now cancer-free. I wanted to be able to look at her face with the words “be brave” underneath her during this process. I walked into the tattoo shop and Kirsten showed me the drawing and it was perfect. She had also included healing plants, lavender and evening primrose, for me. I settled in and 3 hours later I had the finished piece I had been dreaming of. I also had the privilege of having a video chat with Piglet and her mom Jeri this morning and was able to show them how it looks today. Seeing her just reinforced the idea that I had followed my heart and she was meant to be my inspiration/spirit animal through all of this. Hopefully they will be venturing up to our area in July and then we will be able to see one another in person. Puppy kisses heal everything, yes?

That is all of the latest news. I’m taking a rare break right now to just sit at a local favorite coffee place with some delicious iced tea while I enjoy 80’s alternative music and the breeze outside. It is in these little moments I am content and grateful and happy to be able to experience what I’m experiencing. I also ran into a few friends today, unexpectedly. What a great feeling, to be able to hug them and catch up in person for a few minutes. Those are life’s little treasures that we take for granted while rushing around from one thing to the next. I have nothing to do but to slow down and savor each and every one of them. That is a gift. 🙂

Post-Op Reality and the New Game Plan

I’m currently sitting in the living room at my wife’s house. I’m on the sofa and I keep looking across the room to the table where my paperwork from yesterday’s oncology visit is sitting. I know what is inside the folder and I really want to pick it up and look closer, but then I really don’t feel ready yet. My doctor briefly touched on the findings from my post-op pathology report yesterday. He covered the most important parts and rattled off a few numbers and facts that all come back to the same fact – I have stage 3 endometrial cancer.

Stage 3 means the cancer cells have left their place of origin and gone rogue. As he drew cartoonish diagrams of my anatomy and pointed at things, he told us that cancer cells were found in both of my ovaries and in the lower lymph nodes he sampled. The one bit of good news is that the higher-up lymph nodes and the area near my stomach tested negative, meaning that the cancer has not traveled north yet. Once it starts to do that, it settles into other organs and causes a whole other set of issues to deal with.

I was not prepared to hear the words “stage 3” or for the fact that my doctor is starting my chemo treatments next week, just 3 weeks after my initial surgery. He wants to kill what is left in my body on a molecular level before it has a chance to settle in somewhere else. It has been 24+ hours of an emotional roller coaster, although we are both holding it together and talking our way through everything. I am facing 6 – 3 week cycles of chemo. This means I will be locked into a cycle of weekly visits to my oncologist’s office for 18 weeks. I was hoping for a little bit more time to feel well before poisoning myself in order to hopefully save my life. That’s the way the cancer cells crumble.

This also means I may not ever get my pre-chemo tattoo that I wanted to help keep me motivated through the process. I learned that it would have to be completed before I start chemo because we will be killing off my immune system and I will not be able to get work done after we get started. So many little depressing things add up, but I’m allowing myself to process it all in the hopes that by this time next week I will be ready for 18 weeks of treatment without any baggage. Maybe a tattoo seems like a low-priority thing at a time like this, but it really does become about the little things.

We are also having to cancel a beach trip I had been looking forward to. Throughout my surgery/recovery I’ve focused on being strong enough to make that trip before chemo. I’m also giving up a massage coupon that’s going to expire and a few other positive things I was looking forward to. I can’t mow my lawn or plant my seasonal veggies. I can’t do any of the home projects I desperately wanted to work on this summer. Heck, I can’t even pick up or move anything because I am still on a lifting restriction right now. These are all things that weigh on me, knowing I can’t even have that little bit of my “regular” reality in my life. At the end of the day, focusing on saving my life is what is important. I have to tell myself that 18 weeks of chemo will heal me and allow me to do all of those things and more down the road.

We have managed to find a few light-hearted moments in the midst of taking on all of this overwhelming new information. Sam had put googly eyes on a few things in my hospital room while I was sleeping. The nurses loved it. She drew a mustache on me (with my permission) and posted it on Facebook for our friends. It sparked a support campaign of self-portraits of friends with silly mustaches that made me giddy. My doctor is finally catching on to the fact that we have a sense of humor and are using it to keep things light. He was examining my stomach and the 5 entry wounds that are healing and said it looked great. We told him it was huge and the most beautiful shade of purple after surgery. He said, “You’re artists, you probably took photos, right?” I told him not only did we take photos, but I told Sam my stomach looked like a grumpy monster and that she should put googly eyes on it and take photos. Those photos are my favorite thing by far through this whole experience. The doctor laughed and thought that was great.

During my appointment, the doctor also drew a diagram of what “normal” lady parts look like and then drew an example of what my “new” vagina looks like after surgery. To use his exact words, “It now looks like a tube sock, rounded on the end, with stitching”. Let’s say Sam is making lunch and going through food options for me. She will ask if something “tickles my tube sock”, instead of asking if something floats my boat. Sometimes you’ve just got to embrace the little things and find the humor in whatever life throws at you. Googly-eyes on my swollen, purple belly, drawing a mustache on me while I’m waking up from surgery, and giggling over silly words and imagery – this is how we cope.

I am fortunate enough to have a positive support system that includes friends, family, and community. They make me laugh, listen to me talk, offer to drive me to my appointments and sit with me, and now are offering to do fundraising to help me pay my bills while I can’t work as well. I know how rare my situation is and I am appreciative. Please don’t think that I am ever feeling sorry for myself or ungrateful for what I have. It’s exactly the opposite – those things I just listed are the things that keep me going and will see me through all of this. Most of all, I have a best friend/spouse who gets it, all of it, and is ready to be whatever I need depending on how I’m feeling each day. With her by my side, my support system, and my kick-ass doctor and his team, I’m going to stay positive and do this thing. I mean, really, who could ask for anything more? Maybe tomorrow I will feel strong enough to pick up the report on the table and read through the entire report of the dissection of my lady parts. Just maybe.

And Now For Something Completely Different…

I have been away for a while, working, creating artwork, and dealing with other everyday stuff. All of that came to a halt when I very recently was diagnosed with endometrial cancer. The system has worked for me and they found it early and have been pushing me through quickly in order to heal me.

Tomorrow I am having a complete hyterectomy. I’ve never had major surgery like that, but I know it will be okay. My oncologist/surgeon is wonderful and I have faith that all will go well. After that, I will be recovering for a while – approximately 8 weeks total. They say some people feel pretty good at 2-3 weeks, others don’t. I’ve just promised myself that I will take it easy and go at my own pace. Overdoing it isn’t an option.

There has been talk of chemo around July, and I will know more in the coming weeks. Apparently my body has decided that it’s a good idea to not only have one form of cancer cell, but to have a mix with a second, more lethal variety. I’ve heard from many already about how I shouldn’t do chemo and/or radiation and I should try natural remedies. I get it, I do, but according to my doctor, those aggressive cells will be in me even after we remove my lady parts and will resurface and kill me if I don’t take measures now.

Believe me, if I had a less aggressive form of cancer, I would try healthier options. As it is, I’m dealing with genetics and this same thing killed my great-grandmother. I don’t have cancer because I didn’t eat the right things or worked at an asbestos factory. I have a genetic mutation that wants to assassinate me in a slow and painful manner. I am fortunate that it appears that we caught this early. I am going to do what I need to do in order to kill off these cancer cells before they kill me. I will also eat, drink, and take supplements in a way that will support my overall physical well-being before, during, and after these procedures are done.

I have a wife and friends who are already doing research, comparing notes, and want to see me beat this disease. In fact, I have so much positive support from my local community, family, friends, and everyone I speak with, I can’t believe it. There has been a constant feeling in my throat lately that makes me feel like any situation or words can bring on tears. Not sad, “oh, poor me” tears, just tears. I do have some fear of the unknown and a glimmer of sadness every once in a while, but I firmly believe it is the overwhelmingly positive response I’ve received from everyone. The momentum has made me want to survive for myself and everyone else I know. The outpouring of love I’ve experienced is humbling and reminds me of all of the reasons I have to live.

While being prepped for a ct scan the other day I just found myself crying. No reason, it just happened. The guy inserting my iv thought he was hurting me. I kept saying “no”, but he clearly didn’t believe me. I cried for 15 minutes after I left and got to my car. There is no identifiable marker, my body just wanted for it to happen. Strange things happen when we are placed under stress and in unfamiliar situations. Try reading blogs and medical pages about an upcoming surgery you’re going to have to have and it will mess with you. The cold, hard reality that YOU have to be the one who undergoes procedures and be poked and prodded sets in. It isn’t easy, even with the best support system.

I finally feel as ready as I can be for tomorrow’s surgery, but yes, I do still think about the unknown factors and worry a bit. I also know what is waiting for me when I wake up and get moving again. People, projects, ideas, and lots of love and support will be there waiting for me. I am so fortunate and I will never take that for granted. I can do this. I will also be blogging here to give updates on what’s happening with me in the realm of cancer and everyday life. If you want to join me on the journey, please do. I also love hearing other people’s stories, if you want to share.

See you on the other side. xoxo, me