Monthly Archives: May 2013

I Don’t Want to Live Like a Refugee…

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I Don’t Want to Live Like a Refugee…

Well, at least I don’t want to look like one.  But, it turns out, I don’t have a choice.  When Dr. Fedorenko came in this morning, I asked him what time we would be shaving my hair today.  Mom was on her way and ready for photo ops.  He took one look at my scalp, which is now a very thin, heathery kind of blonde and said “We will not be cutting it today.”  “Because there is so little hair, I think that you should just continue to wash it until it all falls out.”.   That news was the pin to my balloon.  I was totally amped to go bald today.  My plan is to shampoo it, hard 3-4 times daily in order to speed along the process.  In the meantime, with my current do, I truly do look like some kind of refugee.  Lucky for me, I was given back my luggage today with all of the hats and scarves that I had purchased before my trip in preparation  for having to look presentable in public sans the hair.  Mom and I tried to have a fun little photo shoot, where we ended up laughing so hard, half of the pics were too blurry to publish.  Take a look below to see how my bald fashion is faring.

Refugee drama!

Refugee drama!

Side View #1

Side View #2

Side View #2

Bring on the hats.  I also have tan, pink, white, and charcoal.  When you can't decide...

Bring on the hats. I also have tan, pink, white, and charcoal. When you can’t decide…

I think I can do this!

I think I can do this!

This is how mom has to dress to see me, now. Did I mention she’s claustrophobic?

TODAY’S NUMBERS ARE IN AND THEY ARE OVER THE TOP!!!

Yesterday’s leukocyte #s were 2.3.  Today’s leukocyte #s are 12.9!!  12.9!!!  No wonder I can’t sleep at night.  I’ve got a lot of rebuilding going on.  This construction zone is working on O/T!  Of course, the waves, high fives, prayers and praise don’t hurt either.  In addition, my platelets have risen from 14 yesterday, to 24, today.  That helps to decrease my risk of bleeding and helps to get a little more oxygen to my brain…thank you, platelets.  I swear I’ll never take thinking clearly again for granted.  ha ha

Symptomatic Changes:  Due to the increase in leukocyte production, I have begun to experience muscle cramping in my left hand.  The kind that you get when you’re dehydrated (usually in your feet) and your hand starts to automatically clench together and you have to hold it open to alleviate the spasm.  But, that doesn’t always work.  It’s not something that’s really treated, because it’s just par for the course.  At night, I have also begun to have mid-lower aching of the spine (much like menstrual cramps), that the doc says is also due to rising leukocytes.  I choose to take no meds for it, so, it’s a suck it up Brooke situation.  Due to the hand spasms, my blog posts may take a little longer and be on a little later than usual (apologies).  Oh, I almost forgot…I am no longer required to utilize asceptic body cleansing.  I can just take your everyday shower.  Yippee!

That’s where we are today.  Holding strong, spirits up, sense of humor in tact.   I can’t thank  you all enough for keeping my spirits aloft.  That’s why we’re rockin’ this…HARD!

The Tide is High and I’m Holding on…

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The Tide is High and I’m Holding on…

What a difference a day makes here in Moscow.  And, I mean a BIG difference.

For those of you who know me, personally, and now for those who don’t, it’s no secret that I’m not the most patient chickadee in the hen house.  When I get something in my sites, I’m going to get it, and you won’t find me piddling around to wait for it.  I’m going to take care of it myself.  SET THE GOAL.  REACH THE GOAL.  DONE!  Who knew that my personal style of living would resonate into this medical adventure to rid myself of MS, but it has served me well during my stay.  Seriously, there’s really only so much that I can control with this leukocyte situation.  I can be as stubborn as an ox, but if my leukocyte numbers don’t feel like rising, it’s not like I can put the smackdown on them.   You simply must wait.  Wait is a four-letter word to me.  Grrrr.

Yesterday, my leukocyte levels were at .28, with an optimum goal for engraftment of 1.0…SET THE GOAL.  About an hour ago, Dr. Fedorenko arrived with my results (earlier than normal).  He said that my leukocytes were now at .23 (lower than yesterday).  My heart sunk.   I said “.23!!!  That’s lower than yesterday!”.  He replies “No, no, no, they are 2.3!”  The original goal, which he did not think I would reach for 2 more days was 1.0…REACH THE GOAL.  Not only did I reach my goal, but I more than doubled it in one day’s time.  DONE!   Don’t think for a moment that I’m taking credit for all of this.  With a cheer squad like I have, there’s no way I wasn’t going to reach that goal.  But, who knew it would be overnight?!

On the turn of a dime, everything changed.  He continued to ramble on that my isolation would end tomorrow, they would return my clothes to me tomorrow and that mom would now be able to visit, again.  She will have to wear a mask.  I will not.  Then, another lifestyle changing statement was made by the good doc.  He turned around and said “And, we will be shaving your head, tomorrow”.   Looks like I’ve finally got that date with Nurse Hatchet.  It works out perfectly, because then I will have access to the hats and scarves that I have in my luggage.  Of course, I will be featuring the “hair raising” event on tomorrow’s blog post.

Then what?  He said that beginning Monday, the 27th, they will begin reducing immune-supportive medications for about 4 days in order for my new immune system to thrive on its own.  I will then receive my first of 4 infusions of Rituximab, which, normally, all of his patients receive only one infusion, here, before they depart that targets B-cells.  Due to my history of MS that has been a non-responder to 4 typical MS drugs, I will be receiving 3 more of those infusions back in the States.  It is not mandatory, but it will help to keep any rogue B-cells from getting any crazy ideas about trying to take the lid off of my MS seal.  Basically, it is a triple-precaution, that is not mandatory, but wise.  It’s an additional 15 hours of my life within this year, that I’m sure I can squeeze in some kind of shopping trip to ease the inconvenience of it. 🙂  No matter the case, the MS will be halted when I leave this hospital and before I get those infusions.

By the end of next week, I will be getting released from the hospital a little ahead of schedule, and mom will be helping me to navigate the streets of Moscow in search of souvenirs, and a normal meal.  I will be weak, and the doctor says that dizziness/weakness will remain for up to 3-6 months due to the side effects of chemo.  Some of my MS symptoms will worsen before they improve due to the residual inflammatory issues that come with chemo.  But, I already knew all of this.  So, yes, I will be taking my time next week.  I have a small checklist of places I would like to go and they can all be reached by cab.

As far as my current symptoms go…for almost five days, I have lived without the MS Hug that has plagued me for years, and, when I have sporadic reprieves from my chemo weakness, my right foot continues to try to fight its way back into its correct position.  Also, clonus, which can cause an uncontrollable trembling of my feet when I place the “ball” of my foot on the ground, has begun to dissipate.  Small symptoms.  Huge to me.

I’ll leave you with this.

In the words of Blondie…I’M NOT THE KIND OF GIRL WHO GIVES UP JUST LIKE THAT!

Step it Up & Go Higher…

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Step it Up & Go Higher…

Oh, what a glorious day in Moscow!   No cloudy skies could possibly dampen this day.  THIS IS THE DAY THAT MY LEUKOCYTE NUMBERS HAVE BEGUN TO CLIMB!!  This is the beginning of the engraftment period in which my stem cells will begin to hone into position and set up camp with my new MS-free immune system.  Dr. Fedorenko predicts complete engraftment with 2 days. The goal leukocyte level is 1.0 for complete engraftment. We had already met this morning, but the numbers weren’t in yet, so, I showed him my new trick.  I leaned over my tablet, gently swished my fingertips through my bangs and a flurry of wisps of hair came floating down like snowflakes.  His eyes twinkled over his face mask and you could see that he was grinning.  His voice rose and he said “I predict, when I get your bloodwork results today, engraftment will have begun!”  He says that he will return in 30-45 minutes with the results.  When he returned, he told me that my levels had climbed from 0.12, yesterday, to 0.28, today and that, in fact, engraftment had begun.  He reminded me that the normal range of engraftment takes place within 7-10 days and mine should land at 8.  He also let me know that my platelet levels would now be adequate enough that I would not require any platelet infusions..  Yay!  To avoid the risk of a cut, he would still like me to wait to have my head shaved.  So, in the meantime, I will be playing “Lunch Lady”(see pic below)  in my room for a couple of days.  Like I’ve said…”Everybody looks good in blue.”

The Lunch Lady!!

The Lunch Lady!!

- Hemoglobin - Leukocytes - Platelets

– Hemoglobin
– Leukocytes
– Platelets

As far as my state of health.  I remain weak, but in very good spirits. All vitals are phenomenal.  Appetite is fantastic.  No pain or discomfort…AT ALL.  To date, not a single pain medication taken short of the surprise shot in the rump for a headache that was completely uncalled for.  I still struggle to get enough sleep at night, but am trying to make up for it with daytime naps.

The nurses now give me a two-handed fist pump when they show up to do my bloodwork and IVs in the morning.  I, of course, return the gestures.  Team spirit is contagious!

Please take a moment to celebrate with me today with one of my favorite Gloria Estefan dance tunes called “Higher” by clicking on the graphic below.  It’s perfect for the occasion and it gets my blood pumping  every time and gives you an idea where my spirits are at the moment.  Woo hoo!  Step it up and go “higher”!!

I’m Goin’ Down, Down, Down…

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I’m Goin’ Down, Down, Down…

That’s right!

MY RESULTS ARE IN!  My leukocytes have dropped to 0.12.  Just what we were looking for.  And, we’re not done yet.  My platelets have also dropped to 15 (yowza!)  He did mention that in 4-5 days, if my platelets remain low, I may require a transfusion to bolster those.  Whatev!  Just let me know when to be ready.

- Hemoglobin - Leukocytes - Platelets

– Hemoglobin
– Leukocytes
– Platelets

His visit with me today centered around this progressing neutropenic stage and what types of symptoms that I may experience.  He has recommended that I rest all day today, and I plan to do so.  Maybe that’s because he caught me sleeping when he walked in.  Two hours of sleep a night is not going to cut it.  He said that I will experience extreme fatigue, which is normal.  I am to be very careful not to cut or bruise myself.  He said that my MS symptoms will continue to worsen, but that will subside.  I am also to be very mindful of the cleansing regimen, and to just use common sense when it comes to any kind of cross-contamination of items that I touch.  .  Not there’s any chance in hell that there are any germs in this room.  They just came in and mopped down the walls, floors and windows with a thick antiseptic  cleanser, changed the bed linens as they do daily and, of course the antimicrobial light is always on in my bathroom.

He continues to be pleased with my blood pressure levels (though sometimes lower, but that’s just me), my temp remains normal or slightly below normal range.  I’ve lost about 4 lbs in the last two days…expected.

The last part of my meeting with the doctor today what all about…HAIR.  After talking to my US comrades who recently had their HSCT here, they each had a story of their own about when the hair came out/off.  I think I wouldn’t have been too concerned if it weren’t for a story about “Nurse Hatchet”, who just swoops in with an “off with your head” look on her face, and before you know it, you’re a cue ball.  I didn’t relay that to Dr. F.  I just said “When do we decide to shave my head?”  He said that he would like to wait 4-5 days until I have engrafted and then they will do it.  He said that it is dangerous to do it during this phase of treatment, as one misstep could cause a cut, which could lead to infection.  My hair is hanging on like a bulldog, so, I’m satisfied with his answer.

Talk about small things tickling my fancy these days.  They just brought in the package with my new hospital gown for tomorrow morning.  I think it has PINK flowers on it!!  My favorite color is blue, and the gowns I’ve had so far have all had blue or purple flowers on them.  But every once in a while, a girls wants to feel “pretty in pink”.  My second little treasure this morning was the lemon slice that was decoratively served with my breakfast.  I carefully, placed it in a bowl in the fridge and now it will be  the cherry on the top of my homemade iced tea that I make each night.  That’s right.  A lemon has me feeling all giddy and pampered.  LOL

Today, is the only day that I’ve awoken to solidly cloudy skies in Moscow.  It definitely changes the hue of my room, but it certainly won’t dampen my spirits.  The sun has been shining through the window of my life since the moment I stepped into this facility, and that will linger for a lifetime.

Peace and Love.

This Girl is on Fire….

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This Girl is on Fire….

Though my days have become rather mundane, there’s so much going on under the surface, it actually keeps me stoked as my numbers drop and this process of engraftment is soon to take place.  Well, at least, in a few days or so.  I want to explain why my leukocytes (leukocyte = t-cell) (see pic below) are dropping.  It’s because they are continuing to die due to the high-dose chemo.  In killing the t-cells, we are killing the MS that lies within the t-cell.  So for optimum depletion of the MS, the leukocyte numbers must go as low as possible so that my stem cells will be able to launch my new immune system with no defenders getting in their way.  I’m sure there’s some football analogy that would come in handy right now, but it escapes me.

This is a t-cell.  My MS resides within my t-cells.  That is why we kill them with chemo.

This is a t-cell/leukocyte. My MS resides within my t-cells. That is why we kill them with chemo.  Nasty little bugger!

Over the last three nights, and for the first time since receiving my high-dose chemo before transplantation, I’ve begun to have night sweats.  Moscow’s “White Nights” have become Brooke’s “White Hot Nights”.  You wake up each night, soaked with sweat from the neck down and you repeat this two or three times.  Dr. Fedorenko said that is the chemo at work.  When we were discussing the fact that my appetite continues to hold strong, he reminded me that even though I am carb loading, the chemo is working at a way faster rate of speed  than my level of food consumption.  He also mentioned that though I’m mostly sedentary throughout the day, my body is actually in the process of running a marathon.  Therefore, he says I can expect to lose some weight during these next two weeks.   Perfect.  I’m five pounds more than when I walked in the door, and I’d be happy to get back to my fighting weight.

I continue to sleep for only four hours per night.  Two at the beginning of the evening and two in the morning.  The night sweats don’t exactly make for a solid night of rest.   When I’m able to, I try to take cat naps during the day.  The doctor is satisfied with that.

IMPROVEMENT…EXCITING!:

During this inflammatory period of time, overall, my symptoms have gone back to their norm, which should change over the next 3-6 months, but that could begin to change while I’m here.  My fingers are incredibly numb and lack dexterity and my legs are very weak, but I’m holding my own.  However, yesterday, a symptom that has plagued me for over four years, magically disappeared.  I have suffered from what is called “The MS Hug”.  It is a tight banding that wraps around your ribcage from front to back (like a charlie horse).  It feels exactly like wearing  a corset, making it difficult to take a deep breath, difficult to speak, difficult to sleep, and, interestingly, difficult to eat anything other than small portions of food.  The tightness often turns into a painful spasm over which you have no control.  Basically, you have to ride it out.  Could be five minutes…could be an  hour…could last half the day.

Upon admission to the hospital, I quickly came to find that the eating habits and timing of meals for Russia, vary greatly in timing and portion of meals compared to our U.S. traditions. (see pics below)  You are served breakfast at approximately 9:00 a.m. that consists of oatmeal, porridge or a square of scrambled egg casserole with two slices of bread.  At 12:00 noon, you are served a snack that typically consists of two boiled apples and/or pears, with a small side of meat (yes, tongue) and two pieces of bread.  Then at 2:00 p.m., you are served lunch.  Lunch is the biggest meal of the day here, and when I say big, I mean big.  Too big for this corsetted chick to eat without having to endure some major pain due to muscle spasms.  As much as I’m starving and need to eat to sustain my weight, I end up throwing most of it away, or pay the price in a couple of hours of pain.  Dinner is served at around 6:00 p.m. and is a minimal offering of rice soup and bread.  I supplement during the evening with the protein shakes provided by the hospital.  They’re just enough to get me through the night and he encourages drinking them to complement your overall health.

Breakfast.  Oatmeal, some kind of bologna and two pieces of bread with butter.

8-9:00 a.m.  Breakfast. Oatmeal, some kind of bologna and two pieces of bread with butter.

12:00 noon-Snack Two boiled apples, two pieces of tongue, one hard-boiled egg.

12:00 noon-Snack
Two boiled apples, two pieces of beef, one hard-boiled egg.

12:00 noon - Lunch Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette...with bread.

2:00 p.m. – Lunch
Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette…with bread.

That all changed two days ago.  Honestly, I didn’t even realize it the first day.  It was after yesterday’s lunch that I had downed like I hadn’t eaten in days and realized that I had no spasms, pain or distress at all…just a full stomach and a satisfied appetite that I realized what was going on.  That’s how this HSCT thing works.  It sneaks up on you  when you least expect it and leaves behind gifts that may seem so trivial to a non-MSr, but are like winning the lottery for someone who’s ever had to live like that.  This is huge for me.  No more eating my appetizer at a restaurant and then having to have them box the entire entree to take home.  Heck, I may even be able to have a side salad.  Imagine the possibilities!!  Yay!

JUST FOR FUN! (hair still hangin’ tough)

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If you ever wonder how I look at 3:00 a.m., this would be it. This girl is on fire!!

MY LEUKOCYTE NUMBERS ARE IN!!!

They are the same as yesterday at 0.13.  He said that is completely normal, especially given that they had dropped a day earlier than expected in the beginning.  He said they will flatline within the next two days.  Otherwise, all of my other bloodwork is outstanding.  I remain very healthy, happy…and blessed.

Oh-oh-oh, Miss International Love…and Fees!

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Oh-oh-oh, Miss International Love…and Fees!

You’ve finally gotten all of the proceeds together to follow through with your HSCT here in Moscow.  You’ve made all of your financial arrangements with all of your banks and credit cards.  You’ve let them know the timeframe in which you will be moving the funds around, the approximate amount of funds that they can anticipate being transacted and that it will be for hospital payment, lodging, etc.  Well, it sounds like you really have your act together.  You should be so relieved to have that taken care of.  I know I was.  You see, I had already been warned that basically every single international patient to date that has tried to make their first payment to the hospital using a credit and/or debit card, was declined for some unidentified reason that varied from patient to patient.  So, there was no way that Brooke was going to fall into that trap.  No way!  Huh-uh!

Admission day arrives, and one of the first tasks at hand is heading to the administrative/financial offices, accompanied by Dr. Fedorenko so that he can act as translator.  On this day, you will make your first payment of $1,000, which covers the cost of your initial week of testing.  MRIs, ultrasounds, bloodwork, xrays, urinalysis and CTs, if necessary.  All of the paperwork is properly filled out with your home address, etc., and, finally the credit card transaction is put into motion.  I remember sitting there so excited to see that machine spit out that little piece of paper for me to sign…not so much!  DECLINED!  They try it again…DECLINED!  Trying to remain calm, when all the while I’m thinking “BASTARDS!”, I whip out my Target card.  Target specifically told me that they no longer charge any additional fees for international transactions, so they were first on my hit list.  The transaction goes through seamlessly.  Thank you, Target.  I’ll be seeing you again, soon.  I immediately texted my husband and put him, his mom (a former banker) and my local bank staff on the case.  Ultimately, they rocked it.  But, don’t think anyone made it easy for them.

With that all taken care of, I breathe a sigh of relief and I am made aware that the next payment will be due after my official acceptance/agreement to obtain HSCT at Pirogov.  That payment will be approximately $23,000.  then, the final payment will be approximately $16,000.  No problem.  I got this!

I’m accepted!  I’m moving forward with stimulation shots, new meds and the works.  I am on my way.  Now, it’s time for that next chunk of change to be paid.   This time, in order to avoid having to wheel me through the underground tunnel to the other side of the hospital, they have one of their financial people come to my room with a portable credit card machine.  How considerate of them.  I bet they were thrilled to be getting their money.  But they didn’t.  DECLINED!!!  I was mortified, crushed, embarrassed and incredibly stressed, all at the same time.  I thought, wait a minute, let me at least show them that I have the funds in the account. I pulled up my bank account and there was no question that the money was sitting right there,waiting for the transaction.  Please note, that at no time, did they make me feel uncomfortable or pressured, and, I think when they actually saw the funds in the account, it went a long way to relieving their fears and mine.

How could this possibly be happening?  Me!  The planner, organizer, one-step-ahead at all times person.  The entire scenario turns out to be marred with twists, turns, miscommunications, lack of communication and way too many levels of fraud security for my own good.  First, even though my bank was told the timeframe that I would be here, I was not told that I had to tell them a specific time and date that I would be making the transaction.  We finally did nail that down, and, once again…DECLINED!  This time the culprit was not my bank.  It was VISA.  My bank card is a VISA debit card, which means that I can use it at any location that accepts VISA, just like a credit card.  It turns out that my bank was allowing it to go through and VISA was blocking it due to possible fraud.  My local bank, God love them, put the hammer down on VISA and now they have cleared my cards for the entire length of my stay.  My bank’s good.  VISA is good.  Sighhhhhhh!   And, on the eve of my transplant, no less.

I am now paid in full.  I owe not another cent!  Oh, wouldn’t that be a fabulous dream?  I, of course, feel compelled to review my bank account online to make sure that everything has gone through and I can finally get a good night’s sleep before this life-changing transplant, on the next day.  Sure enough, the transactions had all gone through…IN ADDITION TO $2,000 IN “INTERNATIONAL FEES”!!!!  WHAT!!!??  Yet another small detail that the corporate headquarters of my bank failed to tell me when I was arranging my pre-trip finances.  I immediately start making mental comparisons to the things that I could have done with that $2,000.  Mainly, paying it forward when I return home…a top priority of mine.  Then I get to thinking about the fact that we have been paying our hotel bill with that card, and taking cash out of the ATM with that card.  My head starts reeling.  I pop back into my bank account and don’t you know it.  We are being charged “international fees” to do so, and at this point, they add up to several hundred dollars.  Each ATM transaction is $8.00.  The fee for the hotel was about $200.

What had to follow was the dreaded text to my husband.  “Oh, gee, honey. You know that $40,000 stem cell transplant plus extra expenses that we have to pay?”  “Well, it’s going to be a boatload more than that!”  “Love you.  Kisses.”    No amount of smiley icons is going to make up for that text.  Well, I’m married to a saint, and he took it much better than expected.  I’ve been really lucky that my mom has become quite savvy with our finances on the outside.  She finds the best deals on food, etc., in the most unlikely places, and she takes great care to be frugal.  We are very mindful that a large marjority of this money that got me here was donated and we want to honor that generosity.

To all of you future Moscow HSCTrs.  YOU HAVE BEEN WARNED!  Even the best-laid plans can be de-railed.  Have a Plan A, B & C in place. Or, just pay for everything in Rubles (cash).  Not exactly convenient, but I suppose it could be done.

TODAY’S MEDICAL NEWS…

I woke up with much more energy than yesterday.  In the shower at 6:00 a.m. and ready to face another beautiful Moscow day.  Albeit, through my room’s picture window.  As far as symptoms go, during this period of time, they all worsen.  Don’t have a panic.  That doesn’t mean that there aren’t changes being seen.  They are just currently thwarted by the inflammation caused by chemo and the lowering of leukocytes and platelet counts.   All completely normal.  The patient and the MS must heal from the chemo, the transplant and all peripheral treatment.  My appetite remains hearty, though I was warned by the doc today, that I can eat all I want, but I will be losing weight because of the energy that the body is burning to compensate for the lack of WBC, etc.  Forget the technical stuff.  I feel great…happy…peaceful.

MY NUMBERS ARE IN…

My leukocyte level has dropped to 0.13.  He predicts that they will bottom out over the next two days and then begin to rise.   That is right on schedule and I couldn’t be happier.  He seems to be genuinely pleased with my body’s resilience, and I must say that I agree.

Today's hemoglobin, leukocyte & platelet counts.

Today’s hemoglobin, leukocyte & platelet counts.

WISP WATCH!  NO MORE HAIR IS FALLING…YET!

Are You in Control, Lord? Are You in Control?

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Are You in Control, Lord?  Are You in Control?

As the days gently pass while in isolation, the routine allows for me to effectively plan my day, mostly, for no plans at all, and it is for this time that I’ve actually looked forward to, so that I might be able to give you a glimpse into what really makes me tick…who I am, why I’m here, how I got here, and why I remain so “strong, brave, committed” as so many of you have praised me for along the way. I appreciate the recognition, but, it’s not quite as simple as that. I didn’t turn into Superwoman overnight!

I know many of you following along are people “of faith”. Maybe you’re Catholic, or Protestant, or Jewish, or Buddhist. Faith is faith no matter how you slice it. Maybe you’re a non-believer. All are welcome in my world.

I was raised in the Protestant faith (Methodist), by the hand of strong-willed grandmother who wanted nothing more than her grandchildren to embrace the church, and, who now sits at God’s side. Add to that a Sunday school teacher, Albert Masood, Sr., whose teachings of over 40 years ago remain with me today and make for a very solid foundation of faith…unwavering, unquestionable faith.

Before you get carried away thinking that I carry my Bible in my purse every day and go to church every Sunday, you can just wipe that scenario right off the chalkboard. When my grandfather Warren passed away, at the funeral service, the pastor said “Warren was the most religious man I knew who never went to church!” That pastor hit the nail on the head with that remark and that is where my grandfather and I have so much in common! My grandfather also grew up in the church, but, as he grew older, he showed his faith through touching the lives of others, like taking such care of my grandmother’s every whim and the needs of their six children, caring for and taking in of family members, and in the end, making certain that every little old lady in town had the brakes and turn signals working on their cars for little or no charge (he was a retired mechanic).

I hold my relationship with God, so close to my heart that I tend to keep it just for myself. It is my happy place, and I don’t always want to share it. I’ve taken my faith with with me during my travels all over the world. Nothing says safe and secure more than having God and a quality Swiss Army knife in your back pocket. 🙂 Over the years, I have been approached by pastors, friends, family, all offering to have me come join their congregation. As much as I’ve appreciated those sincere gestures, I am 100% satisfied with the way I roll with my God and my faith. I’ll be honest. I have great difficulty walking into a church without tearing up. That’s how bad it is. It could be a wedding, a Christmas play, or a basket bingo. When I walk in, I get so overwhelmed by the fact that I’m in His house that it takes everything I have to keep it together. Yes, it’s true. I have a soft side! So, the next time you feel like asking me to a church “tea” or something, please don’t take offense when I decline. I’m just saving you from watching me break down when we walk in. ha ha

So, now, you must be like “Wow!, Brooke is way more “religious” than I thought”. No, I’m not. I just execute it in an entirely different way than you might. Or, who knows, maybe we have way more in common than you thought.

Here’s my philosophy on how I execute my faith. You will NEVER find me banging a Bible or throwing around the “Praise Jesus!” at every turn. Except, of course, if I’ve just had the most fabulous sip of Gascon Argentinian Malbec. Now, that is reason for a “Praise Jesus!”. He and God are the ones responsible for those grapes, right? You will never hear me say every day for every situation, “Well it’s all in God’s Hands.”, or “God will take care of it.”, or “Just pray and it will be okay.” There are certain extreme situations when every option available to you has been exhausted and there is nothing left but to leave it in God’s hands. In that I do believe. However, I feel and have always felt that this gracious gift of faith is no “free ride”. Do you really think that I’m over here expecting God to take care of every little thing while I just sit back and ride his coat tails?! Heck, no! I must do my part as well. I must prove how badly I want it and fight until there’s nothing left in me. It’s no different than getting a promotion at work. Just because you got the job, doesn’t mean that you don’t have to continue to earn your keep. That’s just a little more of my blunt, black and white, sensical take on life. Take me or leave me.

You may be wondering how my faith came into play when I was deciding and preparing for this rather extraordinary trip to Russia to save myself from my MS. It went a little something like this. I did the research. I knew it was the right thing to do and that I was going to make it happen, but, something inside of me longed for some kind of heavenly sign from my dad or from God. I didn’t have to have it to move forward, but it was definitely gnawing at me. Well, dad knows that I’m not that patient, and well, God knows…everything, so they humored me and gave me exactly what I was looking for. Dad (pic below) started “visiting” me when I would sit down to eat my breakfast, but, only if I was sitting in Doug’s chair at the island. One morning in particular, he came to me as soon as I sat down and, as clear as a bell I heard him say “You’re a Taylor (maiden name), and you can do this.” Well, that’s all I needed to hear. BOOM, DONE! Let’s book the tickets! God, on the other hand, visits me in the bathroom. I’m always deep in thought in front of the mirror, contemplating my day and he just kind of graces me with his presence. No visuals, no words…just a presence. And that’s plenty for me.

Dad's words of wisdom...

Dad’s words of wisdom…”You’re a Taylor, and you can do this!

Wow, man, this is getting soooo deep! NO IT’S NOT! Just hang on. It gets lighter.

So, who’s the everyday me? The one who mustered the guts to do this thang!? Here’s the deal. Much to my husband’s chagrin, I swear like a trucker. I’ve actually become quite talented at infusing swear words into multi-syllable words. The more syllables, the bigger the challenge. You try to live with MS for 10 years, and we’ll see if you aren’t slinging F-bombs on the daily. Just sayin’! Don’t worry, I keep my profanities within my domain. I know when to keep my mouth shut…sometimes. My family comes first. Work has always been a very close second. I have great friends who appreciate my sense of humor or all would be lost. I live a homemade country life while trying to infuse it with my big-city instincts. I’d like to think I have the best of both worlds…and I do.

Let’s get down to my medical status for the day. I slept for 4 hours last night…a record. It was only two at a time, but, I’ll take it. I woke up at 6:00 a.m., feeling fabulous, but weak (typical for this phase of the treatment). Get my shower, sit down to the computer, and, suddenly, I can feel my lights dimming. Not the ones in the room, but the ones in my head. I’ve passed out many times in my day, and this was it for sure. I took a deep breath and gingerly walked over to my bed and rang the nurses. I had already placed my head between my legs, pointed to the symptom sheet to let them know that I was dizzy and then they all switched into high gear. My BP was 85/48 and I was misting with sweat. They made me lie on my side, take my temp and start giving me IV fluids to assist with my electrolyte balance. They take an additional blood draw to check for infection/sepsis…it was negative. I was in no pain and not nauseous. This is simply typical and something that I need to pay close attention to and the utmost respect to in the process. Next up, Dr. Fedorenko is on the phone asking all of the usual questions and asking me to please rest until he gets to the hospital. After his examination, he once again says that this is to be expected, but to make sure to report any changes at all, and I will. The nurses just arrived with a battery of fluids to offset my little fainting drama (see the pic below).

This what you get when you get a lil' woozy around here.  Get the (!!!!!! ) out of my way.  I have to go to the (!!!!!) potty!  ha ha

This is what you get when you get a lil’ woozy around here. Get the (!!!!!! ) out of my way. I have to go to the (!!!!!) potty! ha ha

NOTHING NEW TO REPORT ON THE WISP WATCH…SO NO PIC TODAY.

MY NUMBERS ARE IN!! MY LEUKOCYTES ARE DOWN TO 0.18, EXACTLY AS THEY SHOULD BE AND ALL VITALS ARE IN CHECK.

PRAISE, JESUS!!