Thursday, August 24, 2017

snapshot of my days

I felt like I was in trouble, physically, from the moment I awoke Tuesday morning.  That sense can loom over us before we completely understand it-  is it fear?  Uncertainty?  Just what are we feeling? Why?

I rolled out of bed convinced I'd muster the strength to get through the day.  I had labs, then a visit with Dr. P, then off to infusion, and an afternoon visit with our Fourward group.  Whew.  That is a full day.

But everything was wonky from the start.  I simply couldn't breathe.  A step here, and maybe another and I had to sit or everything felt like it was slipping away from me.  I was so short of breath, and lightheaded at the same time.  Bathing, dressing and getting ready were a tall order.

So we were running late- I simply had no control over what my body could do.  I apologized from the start of arriving at Roger Maris, and the wheelchair was not even questioned but rolled out to me instantly.  

Roger Maris was very accommodating and forgiving of me running behind.  I was soon taken back for labs and then taken to Dr. Panwalkar.  But the lab was behind too.  So when Dr. P walked in the exam room door, he got right down to business.

"A wheelchair?  Why a chair?   Oh what is going on with you?"  he loudly proclaimed.

He sat and faced me right away.

So I told him.  How late I had been, and how physically I wasn't feeling well.  My breathing, my ability to walk and stand and do anything, truly diminished.  I hadn't left the house in 3 weeks.  

Where were those labs?  It had been enough time, but they still weren't back.

Dr. P performed his thorough exam of me like always.  Surprisingly my lungs sounded clear and good.  I really didn't show many symptoms that explained how I was feeling.  The photo of me above, shows how well I can look, even when things on the inside don't match the outside.

What would tell us the most, were my lab results.   The labs just hadn't come through.  Dr P needed to move on with his day.  

So Rick maneuvered me out the door and I heard Dr. Panwalkar say, "Oh, I can get her."  The next thing I knew, I looked behind and sure enough, Dr. Panwalkar was pushing my wheelchair!  In case my adoration of him wasn't as high as it could possibly be, he shows another level of compassion for me.  You could say,  the picture of me in the wheelchair to him, didn't match my words either, but he went with his heart and treated me like I said I needed.  He even took the time to move chairs and steer me perfectly into a waiting room spot to sit and wait.  My heart was bursting for all the right reasons.

Soon, my infusion nurse, Casey, took right over with the deep level of care and concern as we continued to wait for the labs.  It was my doctor's nurse, Angela, that brought the final word to me.

The labs were back and my hemoglobin had fallen to a 5.8!  That is low- extremely low.  And it completely validated why I felt so lousy! She relayed to me how Dr. Panwalkar looked relieved too.  The way I felt and everything I had said matched the results in the blood work.     I needed fresh blood- ASAP.  They could get me in upstairs, in two hours.  I needed to come back in a week to do labs all over again, and see if then I could do chemo.  Angela completely understood the range of emotions we were all going through, and went out of her way to help me maneuver it all too.  I don't feel like I can ever thank her enough for all she does for me.  

Then Angela saved the best for last- a kernel of the best news possible was buried in the mix of some not so great news.  My tumor marker?  Had dropped- from 52, all the way down to 40!  The chemo is working! We just need to get my body up to a quality that it can take another dose of the chemo.  

The rest of my afternoon, was spent lying in a bed up on the old family birth center floor.  I watched tv, rested, and relaxed as the drops of blood started to restore me.  Its a feeling of the light coming back on, after the darkness has swallowed you up for far too long.  I could breathe.  I could walk about. Everything became so easy peasy again- as it should be.  Even when Nolan came to take me home from the hospital, he pushed the wheelchair ever so gently, guiding me down to the car.  But I felt like I could have walked on my own.  

A wonderful dinner awaited me at home.  I did happen to gain 3 pounds and it was all due to the wonderful meals and treats we've received.  I've enjoyed the food so much and it truly made a difference in my life!  Thank you to all who have done so many things to encourage and uplift my whole family so much.

I still have a lot of recovery to achieve.  My counts need to all go higher before I will be able to do chemo and get all knocked back down again.  Most of my time is still spent sitting, or lying down, between my chair and my bed.  So I'm doing all I can to just stay in today and make this day count.

One of the things I've managed to make progress on, with the help of a wonderful friend, is turning this blog, into a book!  Without her guidance, her talents, and the her gift of time, this project may never have taken flight.  She's managed to wield a kitchen chair, wedged between my bed and a recliner for me, and the weight of many posts from my blog- woven together with her deft hands.  She's seen me at my lowest, and always helped me to give my best despite everything.  

We're not quite finished, but we see the completed project on the horizon.  

Love to you all! 

Friday, August 11, 2017

life in my days

I arrived at Roger Maris, on Tuesday, the first day of August.  It was one of the valet parking men who opened my door, and for the first time in 6 years after greeting me, wondered if perhaps I might like a wheelchair?  I smiled and affirmed that yes, a wheelchair was the safest route for my little chicken legs to go. 

It was a day filled with so many new experiences, amidst so many well known activities I could do in my sleep.  Like stepping on the scale before I'm taken back to the exam room.  But this time?  I see a number I hope not to visit anytime soon.  108.  Oh my.  It shows, as much as I feel the frailty.

My blood is drawn and then the wait begins.  My tailbone is sore after a few minutes of sitting and I add this to my list of little concerns to address.  Yet mostly, I wait to hear what the nurse practitioner I'll see, will address with me.

I'm wheeled back into the exam room as my phone starts to ding, alerting me to test results coming back on my labs.  I decide to just wait and let Carrie the NP, tell me.

Moments later Carrie steps into the exam room and offers a warm hello. She sits down and turns to face me, seeking my eyes, and talking directly to me.  She simply wants me to know I'm in charge of how this will go.  That she wants to listen to me, and let me dictate how I want things. 

Its a new conversation and yet, it truly allows me to follow my heart.  I simply tell her these are new unchartered waters for me.  They leave me wanting her and my medical providers, like Dr. Panwalkar, to lead me with their experience.  I know the decisions are mine to make, but I welcome their wisdom, their perspective, and skill in navigating this new course we're on. 

So she smiles and we move right into my lab results. I'm a bit flummoxed by my results.  In the extra week I was given to recover- most of my counts had risen into the normal range!  I could do chemo!  What? I'm instantly struck by the power of prayer.  Nothing else can adequately explain how high some of those numbers grew! Just hearing that tiny bit of news was enough for me to say yes, I would do another round of chemo. Relief flooded through me. While I still have some lower counts, that leave me a little lightheaded and dizzy when I move at times, Carrie felt with time some of those counts may still climb as well.  The rest of the exam went by quickly.  

The chemo dose was reduced a slight amount, but the second infusion of Carboplatin and Herceptin went well.  With steroids in my system, the yucky side effects didn't show up for a few days.  But I also had just the right meds to help me combat them.  

So how am I doing?  Overall, I think I'm slowly starting to recover.  I have had a few days with pain that was hard to manage, but through the Grace of God I somehow made it through.  I can readily admit I have cried, and surrendered, and shouted when I need to.  And I'll see Dr. Panwalkar on the 22nd and will ask for his advice on what I can take to help get me through days like that. But after a few rough times, steadily the days have gone better.

I started reading more.  I'm hungry for some good reading suggestions.  I've also started eating more.  Thanks to all who have so generously cooked and served a meal to us, we're so grateful.  I always feel the love sprinkled in with all the comfort and nourishment the food provides. It truly makes a difference in our lives and I am always seeking my own ways to pay it forward in some small way.  

As hard as this has been on the boys, our bond just strengthens with time.  They check in with me often, and help with everything from getting me meds to laying in bed watching tv with me.  

My phone bings and bleeps with texts and emails- so many wonderful friends just checking in with me.  And so many others sharing encouraging words with Rick to bring home to me-my blessings overflow.  

And I've opened the door to my home, and my bedroom, where friends have come and chatted the hours away.  We just set something up in advance and they text before they come over.  It uplifts me so to have these face to face interactions, with so many going out of their way to offer support to us.

Love to you all!  

Tuesday, August 1, 2017

A small update

I hardly know where to begin.  I've tried so many times to get an update out to my dear readers, but I haven't found the best way in order to do so. 

In a nutshell, here is what has happened. 

I've been in and out of the hospital- 11 days total. 

 We simply couldn't find a method to use to update my blog in the hospital.  I also couldn't manage with my phone.  I had to rely on Facebook, knowing so many readers aren't necessarily connected to me in that way.  

I've been home now for almost a week.  Some strength returning, from a bout with a complicated infection which had me knocked down pretty good.

I even got to spend my 50th birthday in the very hospital I was born.  I don't recommend my venue, although the company I had was great.  My brother, Lee, flew in with my niece, Alex, to surprise me. But boy did I surprise him/them.  I had been admitted just hours after he left Pennsylvania.  The look of shock on both our faces as he walked into my room at the hospital was possibly priceless.  I can say, the best gift, was time spent face to face, one on one, just talking with Lee, and truly all of my guests.  Alex, my niece, was also a trooper and sheer delight to spend time with.  

The other guests we had were Rick's brother, Matt, his wife Julie, and their 3 kids.  My boys were in cousin heaven!  I was so grateful for the time they had together, despite the fact I could not see the younger kids. 

At some point in my first hospitalization, we figured out the infection I had, was most likely coming from my kidney stent.  The same day, I was taken into surgery by Dr. Williams who had placed my first stent.  The very next day after surgery my counts rose enough for me to go home.

Even though, less than 24 hours later, I had another bout with chills, then fever.  I was readmitted that Friday night.

 So many blessed events had already occurred- and they just seemed to continue.  Friday night as I sat at the clinic, I was given a direct admission from the Oncologist on call so that I could bypass the ER.    Dr. Panwalkar had already prepared him for the fact I may be calling him.  Plus, I also found out, the next day, Dr. P was on-call and I would see him both Saturday and Sunday.

It truly seems that, for all those who prayed for me, every prayer felt like it was heard and answered.  My care was first rate while I was at Sanford.  From garnering a private room, to Dr. Panwalkar coming each and every day to see me, I felt watched over.  I had a wonderful view of downtown Fargo, with an entire wall of windows to see out.  I could see two beautiful churches and even hear the bells ring in one of them.  I watched many sunrises, and sunsets.  I could go on and on.

No it wasn't all easy.  It was truly hard and difficult.  I surrendered to so many new things, over and over again.  

But here I am.  Still praying that whatever His purpose for my life might be, that somehow I fulfill that.  

I will be having blood work again today.  Then I will see a nurse practitioner, and we will decide if my counts are high enough to do a lower dose of the chemo I had July 5th.  I'm in a bit of a pickle.  The last thing I want to do is feel sick again, as I slowly start to feel better.  But with the new growth in cancer that showed up, I truly need that chemo to help me fend off that cancer.  

I simply don't know what is in store for me.  Neither does Dr. P, or any of the medical community.  My focus is narrowed to staying within each day and making the most I can out of that.  

The question I hear most often?  What can I do for you?  I'm so touched... it's simply this:

Will you all keep holding me up in prayer?  A few things on my heart: 

I'm a little lightheaded and my legs feel as though they can go right out from under me- I don't want to fall.  

My blood counts, both my platelets and my hemoglobin as well as my white blood cells are low and could use a boost. 

My boys and their precious hearts and minds are often burdened and sad- they just need to know in their hearts they will get through this no matter what.

Superman has been my superhero- and he also simply needs to know he has continuously met all of my needs and I'm in awe of his commitment and compassion.  Its ok for him to let others help, too.

I'm deeply indebted to you all!  Will do my best to get an update out at some point.  

~all shall be well~

When you get lucky

When you get lucky

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