Friday, December 26, 2014

On the 1st Day of Christmas....

....It was time to get in shape. What?  Are we really going to talk about fitness and health on the Lord's birthday?


If there is one thing I know about, it's getting back into shape after a hiatus for health reasons. As I've written about in my book "Christ Walk" sometimes fitness and health are where you are in your life at that moment. It may not always be in the fighting shape you want, but we can still have goals and we can still get back to our fitness levels when we are able to so so again. Fitness is not a static moment in time.  Fitness is not a status quo moment. Fitness comes in all sorts of shapes, sizes, and skills at varying points in your life. 

But for me this Christmas, I've decided to take a very literal view of Jesus' birth and look at my own body and life that need to be transformed as I head into this season of waiting. 

I could wait on my butt and feel sorry for myself as we wait to see what the cancer does, or I can look at Christmas as the beginning of a new me and a new chapter of my life. Now that we are settled (mostly) and my body has healed from the surgeries (mostly) and life is returning to some sort of norm (sort of), I'm ready to focus on getting back into shape and making this body a lean, mean, cancer-fighting machine. In cancer-ville, they call this the "wait and watch" treatment. Well, "wait and watch" and see what I can do with me and my body over the next couple of months. It's watch and see me transform time. 

That means daily walks with God, goals of 10K steps or more, healing fruits and vegetables from God's earth, building back my push up strength one push up at a time.  It's learning to run again. It's learning to do burpees again and it's learning to zen again.   It's a time of rebuilding and this does not happen over night. 

It's a slow and often frustrating journey to look at what you need to do in your life to be healthy again, but it's worth it. It's often frustrating to look back and see where I was versus where I am now. But my goal and your goal should be to be in the now on the path you are on. Look ahead to where you can be in the future and not living in the past. Being stuck in where you were in the past really keeps you from moving forward in your journey. Physically turn yourself around and look to a new direction of where you want to be and take that step towards it. 

For Christmas, give yourself the gift of health one step at a time. 

Tuesday, December 16, 2014

Day 70: You Will NEVER Believe What I Have Chosen

God works in mysterious ways.  Without a doubt, both my husband and I believe that God wanted us to be back on the East Coast and in the DC area (despite all the freakishness that happened [and continues to happen] with this move).  We are here for a reason.  And part of that reason was to create a waiting place between Kansas and DC.

God placed me in the waiting place for a good reason.  And I have chosen (believe it or not) to stay in the waiting place.  I dread the waiting place. I loathe the waiting place.  There isn't nearly enough activity in the waiting place.  But the waiting place has become my friend. Upon arrival in DC, we immediately set upon meeting my new oncologist (who is a rock star that looks just like a blond version of my sister in law) :)....we both had questions regarding some of my test results and so we decided to rescan my body and take a closer look at my tumors.  While we waited for the results, I also had an appointment with the National Institutes of Health (NIH) up in Bethesda, MD.  Let me tell you, that place is amazing.  While it is an ALL DAY event to go into the clinics, it was worth EVERY penny of my time to spend with incredible researchers, doctors, nurses and other staff that walked you through the entire protocol process.  Remember last week where I wrote about the top ten things every hospital should do (you can read about it here)?  Well, NIH knocked these out the park (and yes, they had Starbuck's coffee too).

Following additional testing, exams, and a review of my history, my doctor at NIH looked me in the eye and said, "Anna, I'm 39 years old too.  I have a wife, kids, a job.  If I were you, I would not seek treatment for your cancer.  It's not extensive enough.  The staging is not correct.  Your "good cells" in your tumor far out number the "bad cells" in the tumor and you are young.  This needs to be your decision and if you feel you cannot wait for treatment, then we have treatment for you.  But if you can watch and wait, you slow down entering the treatment cycle."  With my kind of cancer, once you enter the treatment cycle, you begin a cycle of remission, relapse, treatment, and over again.  This is very hard on the body and exposes the body to a lot of toxicities.  I'm young.  My tumors are not causing me to be symptomatic at this time, it behooves me to watch and wait.  My NIH doctor shared hope for me.  He wants me to be a part of a natural history study to explore WHY I have this cancer.  And he explained that when the time is right, they will have treatment for me.  It could be a multitude of different things, but when you have the opportunity to wait, you also have the opportunity for new research to be released for public protocols and each year, better and better treatment becomes available.  One day, there will be a CURE for my kind of cancer.  The waiting place gives me a chance to be a part of that "one day."

My local oncologist concurred with my NIH doctor that the repeat scan found only a small, 2.3 cm tumor cluster in my neck.  Nothing was seen in my chest or abdomen.  My blood work is beautiful and both doctors concurred that my shoulder pain was a physical ailment versus as tumor ailment (in fact, my scans DID show arthritis of by C7-C9 vertebrae, so we DO have conclusive evidence I am getting older--HA!).

Which leads me to the dreaded waiting place.  I have never liked the dreaded waiting place.  As a do-er, the waiting place blows.  But I am amazingly at peace about this decision to watch and wait.

The waiting place allows me to grow closer to God.  I am putting my trust in God that the waiting place is right for me.  The waiting place allows me to physically hand over my cancer and my care to God and trust in the Lord God with ALL my heart and ALL my body.  This gives me joy.  I still have worry and anxiety.  I still wonder if I am doing the right thing, but in this waiting place, it allows me to PRACTICE TRUST that God has a greater plan in store for me than anything I can possibly understand.  God has led me to this place, to these doctors, and to this plan.  The waiting place has allowed my tumors to either get smaller or disappear, or whatever might have happened.  Without the waiting place, I would be starting treatments that I might not be ready to use.  In this waiting place, we have the chance (albeit small, 8% chance) of spontaneous remission.  In the waiting place, there is hope, there is peace, and there is a chair with God by my side.  In the waiting place, I can hang up my coat of worry and busyness and rest a little.  In the waiting place, there are all sorts of levels of healing.

Some might say my story is a story of mis-diagnosis.  One can say that.  I would rather think of this part of my story as a testimony to prayer.  I have simply THOUSANDS of people praying for me all over the world; of all types of faith and belief, and of all sorts of denominations.  God has heard everyone of those prayers.  A friend described it "storming heaven" with prayers.  Y'all keep storming heaven for me.  This isn't over.  This isn't a sprint.  This is a long haul of the rest of my life and prayer makes a HUGE difference.

This has been a wonderful example of the power of social media.  We have a prayer chain without end when we share our lives over the Internet and ask each other to pray for each other.  YOUR prayers matter.  They have made an amazing difference in my life and I cannot express my gratitude enough.

Does this mean I will be in the waiting place forever?  No.  I am okay with this.  I will probably have treatment at some point in my life.  But today is not that day.  Does this mean my cancer will not grow?  Probably not.  But today is not that day.  Could things still go terribly wrong?  Possibly.  But today is not that day.  Could things possibly get even better?  Maybe, but today is not that day.

Today, is a waiting day.  Today, I am okay with the waiting place.

God is there.

Sunday, December 14, 2014

Sally the Comet

Friends!  Between moving and doctors, I've been hard at work with my friend and illustrator, Karen Deming, to bring you a children's book I wrote many years ago for my son.  This is a story of space, adventure, making friends and learning, "to make friends, you have to be a friend first!"  Check out "Sally the Comet" now on Amazon: Sally the Comet

This will make a great Christmas gift for your little ones!


Wednesday, December 10, 2014

TEN bits of Advice to the Healthcare industry

Between my personal health and my professional resume, I have been around the healthcare field for a long time. I've noticed things come and go over the years but I have a running list of thoughts that would improve anyone's experience. Here are some of these suggestions:

1. Be a patient for a day. You have no clue what the other side is like until you've traversed it yourself. And gotten lost in corridors. Or had a technician get mad at you for a provider putting in orders wrong. Being a patient can be one of the most dehumanizing experiences. It's not always but it is something we should always remember when working in the healthcare field. And don't presume to know my body better than me after five minutes with me. This is a partnership, not a dictatorship. 

2. Don't put flavor in contrast fluid. It does nothing to help the experience of sucking down bottles of that crap for over two hours. A straw would be nice too. 

3. ALWAYS. ALWAYS. ALWAYS serve good coffee. Life is too short for the patients, doctors, or nurses to be served terrible coffee. Everyone will be happier. Happier people = happier organization. This will always start with good coffee. 

4. If you have to make a patient wait in a clinic for two hours for a procedure, consider decorating with recliners instead of hard chairs. I can Squeeze a nap in while I wait or put my feet up when I'm hurting. Your patients will appreciate the comfort when they are stuck in the dreaded waiting place. 

5. For God's sake--I know healthcare is expensive, but don't try to save a few pennies by turning off the heat. Or at least tell us to bring gloves and a blanket. These places are like waiting in an icebox. Turn on the heat in winter and the AC in summer. Add it to my bill. 

6. Serve good food. People go to hospitals to get well. If we are serving terrible, fake food, that's never going to happen. You can make yummy food that doesn't look like cardboard. And then people will be spending more of their money on your food instead of fast food thereby reducing waste at the cafeteria. 

7. Make everyone in the hospital take a customer service class. And I mean everyone. YOUR attitude makes a huge difference in how I am handling my health. 

8. Provide integrative medicine. And teach your providers that thugs like acupuncture, massage, chiropractic are not all "woo-woo" techniques. They work. And they can make me a better patient if they are included as a part of my care plan. 

9. I'm all for patients that are proactive and engaged and informed in their treatment--but that's not a pass for patients to do a providers job. It's YOUR job to make a patients healthcare experience a good one. And it's your job to make it run smoothly from referral to diagnostics to treatment. Don't twle I'm responsible for doing your job. 

10. Finally, it's okay if patients cry. You don't have to send them off to mental health or chalk up every symptom to their emotional state. Dealing with your health is scary. Think how you would feel in their shoes and act accordingly. Compassion goes a long way in this business and we will remember you far longer for your smile and understanding than we will for your credentials or education. 

Thursday, December 4, 2014

Day ???? (I'll figure it out later): Where is My breaking point?

Do you ever wonder where your breaking point lies?  I've been flirting with mine on and off lately as you've seen from my posts. I'm in a rough patch. I'm old enough to know that eventually it will pass, but young enough that it still entangles me; consumes me; grabs me by the throat and tries to rule me. My rough patch and me are like the devil and drama dancing the tango.  

The last two weeks of my life fit this hashtag: #youcannotmakethisstuffup. I'm living my own personal soap opera and even I am left stunned by the crap that stalks me. 

There are various reasons why. Number one: I DON'T LIKE TO RELENQUISH CONTROL. Number 2: I think I walked under too many ladders or crosses too many black cats or something. Lately stuff is just stupid. 

When you have cancer (or any other kind of tragedy, disease, problem) you instantly lose control over your life. Consequently, you try to retain tighter control over those things in life that you can. For an inherent control freak (I.e. ME), this presents problems. 

I'm sorry, but the whole "Let go and Let God" approach is like Mount Everest to me. It's my sin, I know it and I try to tackle it daily but when I lack control, I find myself slipping closer to my personal breaking point.  Plus, stupid things can make me a little crazier than normal as well. 

This week has been our move. I'm used to moving. My son and I counted up 15 moves in my 39 years this week as we talked about our newest adventure. I'm an old salt. A vagabond at heart. This life suits me, so don't think I'm complaining about my lot. But it doesn't make it easy. The process of moving is inherently exhausting mind, body and spirit. 

And my body is tired. It feels old and fails to respond with the vigor I know. In my heart, I know my cancer slows me down. And I resent it immensely. I have no place in which to focus my fury. No outlet for my angst. I am stuck in this short period of time that is called my move. I am trying to focus my energy on my children who are also struggling with yet another move. This will be the fifth in six and a half years. During all this, my husband is wrapping up school--all so we can leave earlier than planned for me to try and get the right treatment. It's the perfect storm.

And the storm began brewing when we decided to stick with our plans to go to SC for thanksgiving.  I over did it as usual and then to cap the cake with more frosting, we misses our connection by five minutes (it was still on the Tarmac waiting when we arrived) but they wouldn't let us on the plane. This les to a six hour layover and arriving home about 1 am the day our move started. On top of that, I came down with some nasty virus. 

At the prodding (well, really demanding, forcing, cajoling) of friends and family, I did what I truly HATE to do and have asked for help this week. I couldn't do it on my own. It was more than I could handle. I set up friends for dinner, coffee runs, companionship, and child care. And I asked our transportation/moving coordinator for ONE thing:

I played the cancer card--not in jest-- we simply said, "I have lymphoma. We need a smooth move to DC with as quick of a delivery of our household goods as can be so I can see my doctors and get treatment". (Treatment is the only thing on my mind these days--I want this crap out of my body fiercely).   The only thing I asked of them was to send me a good team, make it as stress free as possible, do a good job, and get my stuff to DC. 

Well, this is how it played out:
Day 1:  "Ma'am:  we will be there between 9-10 am". Ok. Good. This will work. Hour after hour passes.  Finally, at 1345, they show up with three people and work for 3.5 hours. Maybe 1/4 of my house is complete. No worries, they tell me that they will come back the next day between 9-10. 
Day 2: 10 am passes by...and then another hour and then another.  Finally, they show up at 1230. With two guys. Evidently, the third has been banned from entering a military installation. All day the lead packer is calling around looking for help. He wants this job done today. There is no way with two guys.  Around 2:30 pm, four more guys show up. Things pick up, but still not enough to finish packing. At one point, they are telling me how they aren't getting paid enough to come help "me" out on this extra job. It's everything I can do not to tell them that I've had to take two days of leave without pay to wait for them to come of the job they were contracted to do. They want to stay until 10 pm to try and finish the job. I am exhausted. My body hurts. My kid is falling a part. We tell them to come back the next day. You don't get to stay all night when you can't show up at the time agreed upon. 
Day 3:  they actually show up at 0940. I'm elated. But there are only two guys and the second guy has the flu. I give him medicine. Fluids. He goes to work. I keep being told they will be done by 1. This from the same guy that told me they would be done by 6 the previous day. No time management skills. When you show up for work four hours late two days in a row, there is no getting done early. I think we all hated each other at this point. Hours roll by. They finally finish packing around 1815. A lot of things were left undone. 
Day 4:  loading van day--"ma'am, we will be there before 9 am". Time passes. At 1040 the van shows up. It's 2/3rds full of other peoples stuff.  There is no room for all of my household goods. Plus, they spent a good hour taking things off and rearranging other peoples stuff that was just thrown in the truck. At 1100, I officially lose it. I spent half the morning yelling at people on the phone that said they would take care of this and make this an easy move because of my cancer. It's been the worst move ever (and remember, I've done this 7 times as an adult). They fill the first van. My stuff is scattered across my lawn in boxes and pieces. It's like looking at your life like a broken puzzle strewn across the ground. At 1630, a second van finally shows up to get the rest of my house. So instead of one move with one delivery date, I will now have two delivery dates and two unpack dates all around three huge doc appointments that wait for me at our destination. The sad thing was that our loading team was great. If they had a van that had fit our stuff, then they actually would have been done on time. Both our loading team and my family got screwed today. 

To the man that said he'd "take care of this and make sure I had nothing to worry about". Thanks. You did a bang up job.

Then our driving adventure ensued. Because the moving fiasco was not enough, I am driving one car and my husband is driving the truck pulling the boat we cannot get rid of.  I loath, LOATH driving. Three days, 20 hours were ahead of us. It was totally a bear down and get through it deal for me. So. I'm trucking a long on my end of the trip with the plan to meet my hubby at our first stop. 

He is four hours late...WTHEck????  The boat trailer broke. I kid you not. The wheel fell off the dang thing?  YGTBKM!!! Thankfully, my husband had the great wisdom not to informs of this until we were reunited. I don't handle that sort is this well. (Control remember?)

Then upon our arrival to DC, we are greated with a traffic jam. The number one reason I've resisted DC to date is the traffic. #countrygirl

This lengthened our 8 hour trip to 10. And I'm already pooped. Grumpy car has nothing on me at this point. 

And I hate these moments. They bring out the worst in me. I can't find my Christian charity. I can't find my patience. I can't find my kindness nor understanding. I'm tired. I'm sad. My family Is sad. We both love and hate to move. On the one hand a great adventure awaits, new friends are around the corner...on the other, we leave dear people that were and have been a lifeline not only during these last weeks of finding out about my cancer, but also during this move. I simply cannot thank them enough. And as we arrived at our new home, it was ready for us. Friends had left gifts and welcome notes and beer!:). And the house itself was everything the Tully family had promised

(I'd like to end the post here, but I'm still irritated at my moving coordination so I will close with the below and say several prayers is forgiveness tonight.)

For the dude that promised to help, and then turned this into hell-- well the sinful side of me hopes you have a move just like this one in your future, and I'll hope and pray you have people by your side because today was awful, and the only thing that kept my toe from crossing the breaking point were the peeps I had by my side.