~ Days 28 - 35 ~ Vacation

No, I didn't have days off from work. There was no Margarita sipping on an exotic beach. But I did have an eight day rest from the medications. That alone was worth it's weight in tequila. I decided that it would also be a good time to take a break from the daily posts and the blog. I suppose I needed a break from reality. Feeling free of the grip that this monster has on me has been the mental rejuvenation I need to fight this next round of the battle.

When you have cancer, almost every decision is based on this fact. I worry about the meds, what food to eat, resting enough, not over-exerting myself, avoiding sick people as much as possible, watching my stress, tests, procedures, appointments and the effect on the boys (something I haven't been able to write about just yet). I took this week to focus on normalcy. We did a little shopping for Connor's Outdoor School trip coming up, ate out a couple times and visited with friends. I even found a couple vintage pieces to add to my ever expanding collection of things to redo when I'm back to normal. Matt and I enjoyed Valentine's Day, sleeping in Saturday morning and lounging all day watching movies. It has been a great week off in that regard.

Tomorrow begins the new treatment regimen. I'm apprehensive at best. The unknown is the scariest part of all this as I have no idea what my tomorrows look like anymore. I do know this one will be tougher than the last but I am strong enough to handle anything. When strength is the only option, you find out what you're made of.
~ still climbing mountains ~

~ Day 27 ~ Off to see the Wizard

Today I had an appointment with my nephrologist (the Wizard).  Yeah, I really call him that.  Everyone has a nickname in my world.  I was apprehensive going into today because I knew it wasn't going to be the news I wanted.  That instinct proved to be right.  The treatment that I was doing was Phase I of a clinical trial I was to enter into Phase II in mid-March.  My team feels that the damage sustained by my liver in the almost 4 weeks I have been on it has proven too risky to continue.  Of all the pharmaceutical approaches possible, only one remains suitable for me.  The risks of the others exceed what I am willing to accept.  I am out of the clinical trial altogether now.  That also means I have to pay for the treatment now. :(  The great news is that I have a 9 day reprieve from all medications before I start the new stuff (just when I was getting used to the vomiting, bathroom issues, and no appetite).  It is hard to be back at square one but I know that this is for the best.  I'm also somewhat relieved I won't be a guinea pig for science although it would have been pretty cool to be a part of creating a new new drug therapy.  Oh well, next time!
~ still climbing mountains ~

~ Day 26 ~ Devil is in the Details

I have been asked repeatedly why I haven't shared the specifics of my treatment like which medications I'm taking, who is my doctor, surgical options, transplant, second opinions and natural approaches taken.  The simple answer is:  I don't want to talk about it.  If I were to share the details it inevitably leads to someone commenting: My Aunt Sally on my dad's side had cancer and they tried this, that and the other thing and it worked great (or she died.  I get that a lot too).  Each person is different.  Each cancer is different.  Type, size, location, stage, and other medical issues are all factors in determining a course of action.  Your medical history and current state of health also factor greatly.  The decisions about my treatment are made after careful analysis by my entire medical team and me.  I have been fortunate that my doctors also consider quality of life highly important as well as quantity.  While I appreciate all your comments, public and private, I don't have any intentions of discussing the details of my treatment.  I wholeheartedly believe that everyone's experiences are different and I don't want to endorse or detract from any treatment that may work for some people.  So, no arm-chair quarterbacking unless you have M.D. behind your name.  That being said, chances are if you're sitting on my sofa with me having some tea, you'll probably here all the gory details because I know you can handle them and I trust you.
~ still climbing mountains ~

~ Day 25 ~ "Served" with a smile

I ran into a friend in the store who heard that I had cancer. After exchanging the normal brief pleasantries and updates on kids and jobs, she asked when I started treatment. Normal question. I answered, just over 3 weeks ago. What followed completely astonished me: "Well, the cancer must not be too bad because you haven't lost your hair yet, you're still working and you're able to go shopping. So why do you have people bringing you meals?" 
I took a deep breath and exhaled with the following in a cadence that rivals the best poetry slam:
Now let's just break down your comments one by one.
1. The cancer must not be too bad - Cancer is bad. Yes, there are different stages of cancer and different treatments, but it's ALL bad. I don't wear my stage like a rank on my sleeve as if this hierarchy garners more respect as I earn my stripes. The idea that you could even put those words together, cancer and not too bad, makes me happy you are not in my support circle.
2. You haven't lost your hair yet - Yes, thanks for noticing. Did you happen to see that it's losing pigment and I'm afraid to dye it because it surely would fall out then. I am not on chemotherapy, yeah not the cure for all cancer, but the drugs still can make it fall out. I haven't decided what to do with my hair yet because I have bigger things to worry about like my will, my kids needing their mother, etc. But thanks for noticing.
3. You're still working - Damn straight I'm still working. Do you know how expensive cancer is? I'd love to stay home and take care of myself but I am my only source of income and health insurance and those $800 in meds every month don't pay for themselves. How's your part-time job so you can go to Maui every year treating you?
4. You're shopping - If you call Target at 9pm to avoid the crowds that can make me sick to buy TP, toilet bowl cleaner and disinfectants shopping then yes, I'm shopping. I spend a good portion of my day, while not at work, in the bathroom getting sick or eliminating the only food I could tolerate that day so I try to keep that area as nice as possible. I see you get to shop for that fine boxed wine in your cart. Have fun with that!
5. Why do I have people bringing me meals?: (Huge inhale) You see, I spend my energy fighting my cancer that is that bad, not worrying about my hair but whether or not I'll get to see my kids grow up, I go to work because I have to, and for goodness sake, life's responsibilities don't take a break for cancer. My friends aren't just bringing me a meal, they are providing love, friendship and above all, support.........(exhale...SMILE).........I hope you know that I will be the first person on your doorstep if you ever hear that diagnosis. I will bring you a meal or five. I'll tell you that no matter what happens with your body, you're still beautiful. I'll marvel in all that you manage to get done in a day with or without cancer. And I'll shop for your TP cuz you're gonna need it! Enjoy that boxed wine.
~ still climbing mountains ~

~ Day 24 ~ Perspective

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” ― Abraham Lincoln......I can't tell you why I feel the latter about having cancer. About life, really, in general. I have had enough bad things happen in my life that any one of them could have destroyed my spirit. I simply don't believe I was put on this Earth to suffer. I've failed, I try again. I've been abandoned, yet I trust again. I've been hurt in love but I still love with my full heart. I can't see what's around the next corner but I have faith to continue to walk the path. We can waist so much time waiting until our perspective on a situation is just perfect and miss the beauty right in front of us, or we can open our heart to love and the rose on the thorn bush. Don't wait until you are faced with life or death to finally change your perspective on what really matters. Rejoice in the blessings and love you are surrounded by.
~ still climbing mountains ~

~ Day 23 ~ Makeover

So when I beat this cancer crap I want a makeover! This disease is taking a toll on my body, inside and out. The disease and meds mess with your hair, your skin, your nails, and your weight. It's not a vanity thing as much as it is a constant reminder that you're not well. It also takes a little of my defense mechanism away. If I look ok then I can fool the world (and myself) that I am ok. When I'm healthy again I just want the outside to match what I feel on the inside. I want something different because I have been forever changed by this disease.
~ still climbing mountains ~

~ Day 22 ~ Help

I could not have gotten through today without a huge amount of help. Matt and Raiden were here at 7:30 to take the boys to Connor's basketball game. Matt called me on Tango and videoed the whole game so I got to see it live!!! Even saw Connor make his basket. Then this afternoon, Lisa and her family picked the boys up and took them to see the Lego movie. What a thoughtful thing to do. I got to actually take a nap. And huge thank you to everyone who has brought food over, visited and lifted my spirits. Your kindness and generosity is overwhelming and extremely appreciated. i am so blessed to have friends like you. xoxoxox
~ still climbing mountains ~