The Elephant in the Room (part 2)

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After this final post of 2019,  I’ll begin the new year with more of my usual topics. It’s funny, I can always find ways to talk about joy. This past year was a challenge, it’s true.  But it was also a time of excitement and learning.  I’m looking forward to sharing the joy.

I decided to add this article as an addendum to my last post about my cancer diagnosis this year. If nothing else, both the person going through a tough disease, and the person who is standing with them, have questions and worries about how to handle the situation. Whatever crisis or serious illness a friend, loved one, or family member is going through, it can be really hard to know how to help.

I’ve been on both sides of the spectrum and it’s not easy.

Here are some of my takeaways from this recent journey.  I hope they help someone somewhere and give them some comfort:

No matter what crisis, diagnosis, keep your hope.  Hope is the single most powerful tool I have for navigating life. Hope keeps you focused and empowered to make well thought out decisions.  Generally, the first instinct when dealing with a rough situation is to panic. It’s that fight or flight feeling, and it’s natural. But running only gets you to a safe place temporarily. After that, you need a calm, quiet mind to absorb what’s going on and decide your next step. And you have to take a step in some direction.  Hope can give you a place to put your feet and stand tall. Hope makes you strong and powerful.

Ask questions but be selective about who you ask. You need good information during this time.  There a lot of advice out there, sometimes it’s good, sometimes it’s bad, and sometimes it just doesn’t apply.  Take time to find the right information for you and the right person to help.

Trust yourself.  You are your own expert. What works for you will be different than what worked for someone else. If you are feeling uncomfortable with your care, medicine, or people around you, it’s ok to take a little time and look at all the options. My 2nd diagnosis opinion was with my G.P.  I trust him and even though he’s not an oncologist, he explained my options and why they were recommended. That made a world of difference.  I still made the same choice, but I felt confident in my understanding of my condition.

See the uncomfortable things as short term.  The chemo gave me a few side effects that were hard to deal with. I found that when I fought them or got angry about them, they were  painful,  unrelenting, and my distress was accentuated. They stuck around longer and affected me more. When I accepted them, made a game out of them (such as trying to guess what new ache I might have during this treatment round), they found a smaller place in my day, and seemed to leave faster. I refused to treat them like a big deal because they were short term problems. For instance, like a lot of folks,  I lost my hair. But after the first week of chemo, I had a friend give me a buzz cut. It had already changed texture and felt weird to me. I had read stories about how your hair will take longer to fall out if you are really gentle with it. Maybe that worked for some people, but honestly, I just wanted to move on. I got some great scarf/ cap combos and a really nice wig and I was set. 5 months after chemo it’s about an inch long and getting thicker. So yay! Neuropathy is another common side effect. Even now, I still have numbness in my toes even after my chemo has ended.  It’s fading though.  And if some of it sticks around, it’s ok, because the discomfort is minor and I’m still here. When you feel like so much of your life is beyond your control, it’s empowering to face these things head on.

Keep your sense of humor.  Some of the most joyous moments I’ve had in my life were after I got sick.  I know that sounds weird, but humor gets you through the hard stuff. I was surprised at how much I laughed this year. Sometimes it was mixed with a few tears, but I could always find a reason to smile. There were awkward moments during exams when saying something funny just broke the tension. Meeting other patients and telling stories helped too.  We all had funny stories to share.

Make difficult appointments special. My secret party bag made my chemo treatments fun. It’s a panda overnight bag that Greg bought for me when we were in Washington D.C. at the National Zoo. It’s quirky and brightly colored in pink, orange and turquoise. I brought it every time I had an infusion. I put all kinds of things in it, from unusual snacks and drinks, to things like playlists, puzzle books, headphones, embroidery projects,  lotion, and a cozy mystery. I brought more than I needed to get me through an 8 hour treatment, so I never ran out of things to do.

Every single illness is different. You can have the exact same thing someone else has, but your challenge will be different. You may have an easier time than some and a rougher time than others. It just how your body reacts. So if someone tells you how bad their illness was, you can empathize but try not to get sucked into the stress and worry about how you would handle their struggle. It about not borrowing trouble. Usually when someone tells you their story, they are trying to either prepare you for a bad time or reminding you how bad they had it. But a serious illness is not a competition. It just is what it is. Wait and see what happens and then decide how to handle it.

Seek out people and places to help you. You will need help with something, whether it’s getting a ride to an appointment, information on financial assistance, having someone prepare a meal, or learning how to do your make-up when you have no eyebrows and numb fingers. If your hospital or medical center has a nurse navigator, sign up! Nurse navigators are the bomb! They will be there with you through the whole process and can help expedite care when you need it. They are there to help even if you just need a shoulder to cry on.

Don’t be afraid to have alone time. I’m a social person, but I really do love my alone time. After all of the time I spent in the hospital, then with doctors and nurses, numerous appointments, and just having friends and family worrying about me, I was craving just to be alone. I needed frequent alone time to regroup. With so much going on, I would have to just shut the door sometimes so I could process everything. I was exhausted as well, so interactions with people were tiring.

Speak kindly to yourself. It is so easy to blame yourself for your illness. You ask yourself questions like “What did I do to deserve this illness?” “Why is my body doing this to me?” And, “Did I get cancer because I am a bad person?” No. There is no real answer to why diseases develop other than to say it just happens sometimes. The good thing is that treatments for cancer and other serious diseases are getting better each day. There are tests now that help to see is someone may be predisposed to certain problems and the ways to diagnose illnesses have gotten quicker. But there still is no guarantee that you will or will not get sick. There just isn’t. Perhaps one day there will be. That being said, it isn’t your fault you got sick. The choices a person makes on how to live their lives may hint at future illnesses and there are definitely healthy living choices that you can make to give yourself an edge to live a long life. What you can do to treat yourself like your own best friend. What words would they tell you? If they spoke badly to you, would they still be your friend, or would you say “Hasta La Vista, Baby?” When you stop blaming yourself, you will start to feel better and be empowered to move forward.

It takes whatever time it takes to get well.   Boy, this was a hard one for me. I have always been strong, capable, and independent. The cancer forced me to slow down and focus on just getting well. I think we all look at others in similar situations to our own and compare ourselves to them.  It’s a natural response, but honestly, other than gleaning some very basic guidelines, it’s not helpful. Again, we go back to everyone being different. I had to learn to just accept that I was going through the fight of my life, and I needed to find what worked for me, That included being patient about side effects from my treatments, realizing the need to have help from others, that I would have a lot of interactions with doctors and nurses, that I had to change  quite a lot the things I had planned to do this year, and just accept that life through me a curve ball.

Acceptance. Things getting easier to handle once you can bring yourself to a place of acceptance. One point I want to make here, is that acceptance doesn’t mean you’ve given up. Far from it. Acceptance is simply understanding that where you are, right now, is a starting place. You become real about your current situation. You stop denying that you are ill. You stop the mental side-stepping and deflecting.  You just stop. Once you do that, you can access what’s happening. Sure, it’s scary, but it’s also empowering and freeing. In the quiet place of acceptance, you can find your way forward. You can find direction. Most of all, you can find hope.

Have a plan for your recovery, as well as your treatment. When I was in treatment, I had a goal, a plan. I was actively fighting the good fight.  I was engaged in what was happening. I had blood tests and appointments. Chemo was scheduled in a timed manner. My immediate goal was to finish my treatment and be healed. I was focused.  When my treatment ended, I felt lost. I realized that while all of the tests said I was fine; I didn’t know what to do with myself. What should I do next? How long would it take before I felt normal? Am I really cancer-free?  What do I do if it comes back? Who was I, now? I needed another plan. Fortunately, my hospital had an end of treatment booklet that helped me deal with that. It had information as to how long symptoms last, questions to ask my doctor, and pretty much anything else I could think of. I took a few tentative steps. I came to accept I really didn’t know what recovery meant for me. And that was okay. I would learn. I decided to see what after treatment programs were available to me. I explored nutrition, meditation, Thrivorship classes, and beauty care. I gave myself permission to not know what was next, and just allowed myself to figure it out as it came.

A serious illness changes you. Like any life experience, having cancer or another disease, changes you. The core person of who you are is still the same, but you have new experiences to add to it.  I think of it like a rich and flavorful stew.  You start with a few basic ingredients. They are good, but kind of bland. Then you add some experiences, or spices. Mmm, “that’s a little better, but it needs more.”  Then you add a little something here, a little something else there, sometimes it tastes good; sometimes maybe not so good. If it’s not so good, then you add something else.  It simmers on the stove until you get the lovely blend of flavors you love. It’s still the original meat and potatoes, but man it’s now so much more. You are so much more.

Be honest with the people who help you, or the one you are helping. So often, we want to spare our loved ones trials and discomfort. If you are the helper, you try to anticipate how to support them. You make their favorite foods, you try to protect them, coddle and fuss over them, you do those things you think they need to heal. Then, surprise, surprise, they get angry, frustrated, and uncooperative. You are left to wonder what went wrong and if you are even needed. If you’re the patient, you worry about your sickness, finances, your loved ones getting enough rest. The medicines change your taste in food; you are sometimes completely tired or full of energy. You feel confused. Your partner is overly helpful, and you feel trapped. All of these things can go through your mind in a matter of seconds. You get mad and lash out.

What to do?  Talk. Pick a somewhat quiet time and just talk.  Talk often. Both of you. You are each in unchartered territory here. You won’t know what each other needs or worries about until you talk. You each have enough stress going on without assuming you know what’s best. How ever you go about figuring it out is okay. Just talk.

Create new celebrations. My surgery was on Valentine’s Day. In one way, it was pretty sucky. In another way, it was wonderful, because it was the starting point of my healing process.

Either way, I’ll never look at Valentine’s Day the same way again. While I’ve been on this journey, how Greg and I celebrated, changed. Easter was a blur, as was Memorial Day and the 4th of July.  I did go to a friend’s wedding in June. She made a special trip up here to Reno to get married and magically I was able to put the fatigue on hold and fully celebrate the day with her. I was exhausted the next day, but I was so glad I went.

We went on a vacation for our anniversary in September. It was a short 5 day trip to Las Vegas. Bear in mind, I have never been excited about going to Las Vegas.  I was always saying “No thank you!” went it was ever mentioned. But this year, something changed for me. I suggested going to Las Vegas. I was excited about it. I spent days going through what things we could do on our visit. We drove down, stopping in funky places and enjoying the atmosphere. We visited with some very dear friends and had a great time. We went to the Red Rock desert and visited the tortoises. We found a game shop Greg was interested in and spent time there. We did the Titanic exhibit, the CSI experience and the Shark Aquarium.  We walked the strip. We had a great time. We rested when we felt tired, did what we felt like doing, and just were “present” with each other for the whole trip. It was probably the best time I have had in a long time.

Last month, Greg and I went the Steampunk Ball in town. We hadn’t done something like that in years. I dug out our old costumes and revamped them, and we got dressed to the nines. I was tired by the end of the night, and sometimes I just sat, and people watched, but I came home renewed and inspired to do it again next year.

Thank your body.  This is a big one. While you may feel like your body betrayed you by getting this disease, try to keep it in perspective. You body was attacked.  It put out warning signs that something was wrong and now you are fight it, together. Your body is amazing. Your body is wonderful.  Your body is in your corner. Support it. Love it. Thank it, for everything.

Think gratitude. I have learned more about gratitude than I thought I needed to know. At first it was really hard to even think about being grateful for the basketball sized cyst that was my pal, Wilson. I was angry and just plain scared at first.  I hated being stuck in the hospital, hated the way I felt and looked. I was hurting and tired. But, slowly, as I realized just how much support and love I had, how experienced my doctor and his staff were, I saw how blessed I was. Everywhere I went I would find help. Strangers offering me their special blanket, a friend giving me a beautiful wig, the clerk at the grocery store with a smile of encouragement, were all powerful experiences. Usually, these arrived just when I needed some encouragement.

Some of the most generous and kind people that I met were those who had gone through chemo just ahead of me. They gave what they knew I needed.  I, in turn, learned to pay it forward, too. Their strength was amazing. As we talked, I realized their strength and grace came from their understanding of gratitude and keeping it at the fore front of their lives.

I sincerely hope that none of you have to take a similar journey as I did this year.  But if you do, I hope these few insights help. I wish you comfort and love.

As I’ve said before I am so much stronger and better, as a person, having gone on this journey. It’s not one I would have picked, but it’s made my life rich and given me so much.

I don’t know what’s next around the corner, but I’m planning to embrace it fully.

Thanks for reading.

 

 

 

 

 

 

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