Sunday, January 15, 2012

A Tale of The Little Engine That Could...

Did you ever read the classic story, The Little Engine That Could by Watty Piper?

Assuming that most of you will say "yes" to being familiar with this tale, most of you will remember the famous line from the book, "I think I can...I think I can...I think I can..."

You can also probably visualize the little train trying its best to pull the huge load up and down the hill...

Well, we have had a bit of a true-to-life "I think I can" saga going on here.

My train ride has been up and over various medical hills and valleys.

Dear Hubby has been along for the ride, as have the boys.
They have been trying to stay positive and chug along as it has been a challenging ride, to say the least.

Back in the fall, found out that I would need to have a hysterectomy and some bladder reconstruction surgery.

Hill Number 1
But then, things got interesting, the first big hill being a ruptured ovarian cyst followed by a hospital stay, as the fluid had got up under my sternum and mimicked the feeling of a heart attack.
My lymph nodes and blood pressure weren't happy about the cyst rupture, to say the least...
Stayed positive, got through Hill 1, and then, loads of tests, blood work, and such.

Hill Number 2
Tried to get clearance for the hysterectomy surgery.
Kept a positive attitude, as I was pretty sure that I would be cleared and on my way...
Did not get clearance to have the surgery from the hematologist or the cardiologist.
My blood is in need of an overhaul and since it is not working correctly, it is straining my heart.
My blood is too thin with some factors (VWD, Factor 8, Ristocetin) and too thick in others (high hematocrit, high hemoglobin) so it is sludging through instead of flowing like it should.

Hill Number 3
The doctors did a CT scan and discovered something: that I have a complex cyst in my kidney.
One of my doctors who had reviewed the CT scan felt that it needed to be taken out immediately so she referred me to a well known local cancer treatment center.
So, had another hill to climb this past week...

Luckily, Dear Hubby came along to the cancer center for Hill Number 4 , as it has been a bit more of a challenge to stay positive and feel that "I think I can" attitude.
We went last week and met with the doctor at the cancer center.
Hearing the word cancer, having to fill out a myriad of forms, having to decide about things like Living Wills and whether or not to participate in clinical research is a bit daunting, to say the least...
We got the impression from the kidney cancer doc who specializes in these sorts of things.
According to him, my kidney cyst is "in the bleacher seats", not in the front row.
He also added that he felt that at present, "the morbidity risk outweighs the benefit" of trying to go in and cut this out from where it is situated at the moment.
They would do an MRI and keep an eye on it to see if it grows or moves.
So he ordered an MRI with and without contrast...

Hill Number 5
Had the MRI and had a violent reaction.

Dear Hubby said it was so surreal, as first, they called him to say that I was done and would be out shortly...then, a half hour later, they said that there had been an incident and they were going to hold me for a little longer there...
Then, they called back another half hour later and said they were taking me to acute care...
Then, when he arrived at acute care, they told him that they had to take me for a CT scan of my brain, as I may have had a brain bleed.

From my end, it was equally surreal. Went from listening to 80's music with a little Bob Marley mixed in the sound track in the MRI tube to feeling like I was on a hay ride with 10,000 cats.
Then, went from feeling like it was one of the most wicked hay fever attacks ever, to having the blood vessels in my eyes popping, to having them test me for my reasoning, speaking, and strength, to them deciding to take me for a CT scan of my brain...just a crazy way to spend several hours.

So, now, not sure where things are going, but the train has not derailed and we are still trying to keep up the "I think I can" attitude...

Am taking meds, am trying to enjoy each and every day with the boys and my hubby, and am getting myself geared up for yet another uphill ride this week. Feel very blessed to have such a wonderful family, as well as some truly great friends who have been very supportive through all of this.

It has been quite the ride on the boys too.
They have had their own peaks and valleys on this wild ride...
Little Bro asks me daily how many doctor's appointments I have for that particular day and for that particular week.
Big Bro has been trying to be a perfect helper but gets very easily frustrated and overwhelmed.
He is feeling that he has to be the responsible one, whereas Little Bro has regressed on some days, acting very babyish and even preferring to play with some of his preschool type toys and older works from back when he was 3 or 4...
We have been getting lots of time outside to play in the park, to take in some sunshine, and to let out the stress.
Have been trying to keep somewhat of a homeschool schedule but have realized that there will just be days when we do what we can...
The boys prefer to have a regular routine as much as possible, so we have tried our best to keep things consistent.
We were happy to learn that they have several programs in place at the cancer center for the whole family, so depending on how things progress, we would like to take part in these...

Dear Hubby has had to be in the "I think I can" mode quite a bit too...

He has had to juggle work and home, the boys' needs and mine, and the toll it takes to try to keep things running smoothly when Mama is not 100%.

When Dear Hubby is stressed, he likes to throw himself into projects and into working on train sets.
Working on trains for him is a stress relief as much as a fun hobby.
I have been pinning wildly on Pinterest...over 6,300 pins and counting...
Thanks, Pinterest!  
Pinterest has helped me to keep positive and to be able to visualize happy things during this difficult time.
Cannot thank the creators of Pinterest enough, as it helps to be able to pass the time clicking on neat visual images and to be able to categorize them and think about doing all sorts of neat projects in the future related to the pins and boards...

Well, these two hobbies (Trains for my hubby and Pinterest for me) collided in a wonderful way, while perusing things to add to my Pinterest boards, while sitting at one of the many doctor's offices waiting for an appointment, had seen a Flickr photo of an amazing Lego table

Sent the link to Dear Hubby and so he cranked out and has whipped up a truly amazing train table and activity center for the boys!

Thanks to rb3wreath Boyd on Flickr for inspiring us! Hope that you will like how our train table turned out, too!

Here is the awesome and amazing train table that Dear Hubby made for the boys:

It has been a wonderful addition to our playroom / classroom. They can play with their Lego trains on this table, but they also can use the table to do their school work or to play with their other toys, etc.

Well, hope that if any of you are having to go through personal struggles, that you also keep at it with trying to have that "I think I can" attitude...

With the support of your family and friends, and with strong faith in God, even when the chips are down, it is possible to get through even the wildest and most harrowing of rides!

Am not certain as to how much blogging I will be doing, but will probably keep pinning like crazy, as it is fun to visualize positive images while going through all of this.

If you would please keep us in your prayers, for us to stay strong to get through all of this, I would really appreciate it.

Am hoping that it is in God's plan for me to be around for many, many years to come, as I love being a mommy and wife and cannot picture not being here to see the day-to-day with my family.

Am placing it in God's Hands and am hoping that somehow, there will be a viable option to get that darned cyst outta there without it being such a high risk.
Hoping that they can do the hysterectomy and bladder reconstruction, as that has been put on hold and that is something that is really also medically necessary...

If you happens to read this, and you are or you know of a surgeon or researcher specializing in complex kidney cysts, and  / or Von Willebrand's disease, along with other non-specific coagulation disorders, would be great if you have any suggestions as far as less invasive, higher success rate, lower morbidity risk procedures. Would like to get a second opinion and would love it if anyone knows a contact for me at Duke, Anderson, Mayo, or the Cleveland Clinic.

Have a great team of doctors trying to figure this out here, but am hoping that someone will pose an alternative way to take this little sucker of a cyst out before it gets the chance to get bigger.

Hope that you will all pop by from time to time, as I may do some blogging...just not sure yet what the next few weeks or months will be like here.

Here's wishing, hoping and praying for a healthy and happy 2012!!!

2/6/2012 Update:
When they got the results back from my MRI, they discovered additional kidney cysts.
I have now been referred to Duke Medical Center by my doctors. 
Have contacts in some of the specialties, but was told that I would have to find some of the specialists myself. Called the Duke Referral Line and they suggested that I consider the option of having medical students look at my case, but am not sure about that as an option, as it has been complicated for veteran doctors here in Florida. 
If you read this and you have connections at Duke in any of the specialties, please contact me so that maybe I can contact them. 
Still need to add a few to my team who will be working on me there, namely a cardiologist and a kidney doctor who has some understanding of coagulation issues as well as kidneys. 

2/16/12 Update: 
We have decided (based on both the doctors' recommendations and the general impression that we have gotten) to instead go to the Mayo Clinic. That is the plan...if anyone reads this and has had a similar diagnosis, consider going to Mayo Clinic. 
They have been wonderful to deal with so far!!!
Dear Hubby might do some updating from time to time, but other than that, I will not be blogging for a while...
Please continue to pray for me to get through the surgery and for my family to continue to be strong, as it is still a long haul ahead... 
The boys are doing well through all of this and we are continuing to go full speed ahead with our homeschooling year. We will take some time off during surgery time, but then, we hope to get back into the groove shortly thereafter. 
We have been working at making every day special, as when you are faced with things like this, you realize you need to truly enjoy every day. Live life to the fullest, but take pleasure in the simple moments too...
Today, the boys and I did PE and science at Clearwater Beach. Nothing clears the head faster than listening to the waves and watching the boys play at the beach. We feel so blessed to be able to homeschool, as it has allowed us to continue to spend quality time with each other throughout this whole time! 
Well, hope that all of you are enjoying February! 
On a side note, I have continued to pin, pin, pin on Pinterest! 
It has been a wonderful stress relief and way to keep positive and happy. 
Hope that you will check out my Pinterest boards and hope that when I get back into blogging, that you will pop back to see how things are going. 

11 comments:

Discovering Montessori said...

My family will be praying for you and your family! You have a wonderful spirit and I found this to be such a inspirational quailty to possess! Thank you for sharing. Hugs and Kisses from Lansing, Michigan.

Christie said...

I'm sending prayers your way. Stay strong:)

jojoebi said...

wow, I knew you had been having health issues but I didn't realise how bad they were. It is great you are keeping a positive attitude and I am totally with you on the Pinterest addiction lol.

Wishing you the best of luck in zapping that nasty cyst and that good health comes your way soon,

hugs

jo

Clémence said...

Hi Colleen,

I'll be praying for you and your family. I hope you'll recover soon. Thank you for sharing your story, in french "Colline" (pronounced the same way as your name) means ... little hill.
Bravo for the hills you already climbed with your family and lots of courage for those yet to come, hoping they will be smaller...

Clémence

Stephanie said...

Colleen, I am sending a ton of prayers and postive thoughts your way. I hope and pray that the doctors find out what they need to find out and that they have a sure hand during any opperations you may have. Best wishes, Good Healing, and Happy Pinning!

Leptir said...

Hi Colleen! You are so positive person! I like the way you handle your health problems. You are so strong woman, I mean, your inner strength :)
Take care! I'm thinking about you :*

Kisses and hugs

Nataša

Tracy L. Crawford said...

Colleen,
So Sorry that you're going through so much right now. My thoughts are with you! That positive attitude of yours will help.

Much love,
Tracy

Karen said...

Glad you called and we talked...My prayers and love are with you always Colleen...you are a BRIGHT light in the WORD! XOXOXO Karen

My Boys' Teacher said...

Praying!

María said...

Hi Colleen!
Your positive attitude will definetly helpa you. My thoughts are with you.
Stay strong !

María

Lesley @ early play said...

Praying you maintain your positive attitude and strength. I have posted for you at crashers and hope you win. i will mention you on my facebook page.

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