Not so normal...or the new normal???

Well my hopes of a normal weekend have not materialized, tripped up by the abdominal bloating that has rendered me practically incapacitated.  I am basically on self-imposed bed rest because it is so painful and exhausting to be upright.  A morning trip to the Apple Store to fix an issue with my Apple ID, left me exhausted and miserable.  Oh, and, by the way, they couldn't fix but the issue but I figured it out later.  If you have an old Apple ID and add a new email address to it, it really messes things up.

So, here I am, lying in bed watching movies and basketball hoping this isn't the new normal.  Dr. Efebera said it could be a side effect from the steroids given with the chemo.  Maybe it will resolve in a day or 2.  But, I'm looking ahead a week when I'm supposed to be taking ski lessons in Steamboat and I'm hoping this isn't the new normal so I'll have a chance to participate in our trip.  This ski trip is my last chance at fun before the descent into the depths of the stem cell transplant and aftermath begins.  I pray that it can be the old normal....just for a while.

Camel Backs

In roller coaster parlance, camel backs are a series of hills on a steel or wooden roller coaster where each succeeding hill is a little bigger.  Camel backs produce negative G's or "air time".  I've been having a lot of "air time" the last few days.

Monday was great...good news from the kidney doctor, hope for some of the edema and made it through the chemo ok...or so I thought.  Turns out the super-heavy duty steroids they give with the chemo really caused me to retain even more fluid.  I was at work on Tuesday and felt my legs filling up like water balloons.  Thank God for my fat lady pants.  Was able to make it to the Meet the Team dinner for Claire's school lacrosse team but my legs were so swollen it hurt to straighten them or bend them fully.

Wednesday wasn't much better although its always better first thing in the morning.  Standing vertically just sends fluid into my legs. I got to my appointment with my favorite doctor, Doug Levin...the one who punched my ticket for this rollercoaster.  He is what I describe as "funny-grumpy" but he's got the driest, most ascerbic sense of humor I've some across in a physician.  He asked me how things were going and I told him its been quite a whirlwind.  He said looking at my chart that I have a lot of really smart physicians working on my case.  Good to know.

He talked about what a good prognosis I have due to my "excellent performance status" (why thanks, Doc, you know how to make a girl blush.)  I told him that I feel so much of my prognosis is due to his diligence in finding what was wrong.  I asked him how many cases of amyloidosis he diagnosed a year and he said he couldn't say.  He said the original assessment of "fatty liver" just didn't fit with the symptoms.  Too often when diagnosing, a physician will get "anchored" to a diagnosis and not consider other diagnoses that are more in line with the patient's symptoms.  His time practicing internal medicine many years ago taught him to look beyond his specialty and take a comprehensive look at all the systems.  Thank God he did.

He's also gotten some action on trying to get the edema under control.  He told me, "Just keep your eye on your online chart.  You should see some new prescriptions showing up there."  Sure enough, I got a call from the kidney doctor today increasing the dosage of one medicine and adding another to try to help.

This morning was pretty rough as I had my first bout of nausea and abdominal pain.  The pain was the worst pain I've felt in a looooong time...like since I was pushing out a baby without an epidural type pain.  It only lasted about 1-1/2 hours but it really knocked me for a loop.  I told Amy I'm just considering it as a preview of coming attractions.  :/

I did feel better, made it through my chemo today just fine and Alan, Claire and I went out to dinner like a normal family again.  It was a nice respite.  As we were driving to chemo today, I told Al I still wonder at times. "Is this really happening?  Is this really my life?  From normal work, family, workout, social stuff to ongoing doctors and drugs and IVs."  Seems so surreal at times.  I went from someone who avoided taking medication at all cost to someone who now takes four medicines every day and have two others to take to deal with symptoms or side effects.

Really, the worst part of the last few days was not directly due to my disease.  On Wednesday, I sent my Redfront Macaw, Pippi to another home.  It wasn't totally due to my illness but looking at having very limited time and energy over the next year, I knew it wasn't fair to her to leave her alone, parked in her cage when she needs her human family and interaction.  So, my vet found a wonderful woman who already has one Redfront to adopt her.  She's going to an awesome home but I'll miss my bud.  I've had her since 2006 when she came here as the bird version of a little puppy.

There are still plenty of mercies large and small in the midst of it.  Yesterday, I got a call from Deb, the sister of my sister-in-law, Karen.  Connect those dots.  Karen, Deb and Cindy are the three sisters with whom I spend a weekend in November every year making 13 or so different kinds of Christmas cookies.  We've also done Thanksgiving with Deb and her husband Paul and other family celebrations.  Although we don't see each other frequently, we feel really close and consider one another sisters.  Deb was so full of encouragement and uplifting words.  She reminded me of how strong I am and that I just need to focus on what I need to do to get well and that I will have a lot of life to enjoy on the other side of this.  The conversation just filled me with such joy and hope. I didn't have sisters growing up but I am so blessed to have three wonderful women as my sisters now.

The team at OSU is so responsive to make sure I have what I need to get well and feel better.  They handle all discussions with the insurance company and nothing has been slowed down because of that.  Even today, they ordered me some anti-nausea medication while I was at chemo.  While I was still there, the pharmacy called and said the insurance company required pre-approval to fill the prescription.  I was ready to call the drug plan when I mentioned it to the nurse.  She called the nurse practitioner who contacted the drug plan and pharmacy so it was waiting for us when we got to the pharmacy.  The James is definitely a well-oiled machine.

I may only have one cycle of chemotherapy before the stem cell transplant.  Hollie, an incredible nurse practitioner who works with Dr. Efebera said that the insurance company may not approve the second cycle that would occur when I get back.  I'll leave it up to Dr. Efebera to get it worked out.  Right now, I'm scheduled to have my stem cells collected on April 2.  That's the birthday of one of my best friends, Allyn.  So, we'll have something to share on April 2...the beginning of her life and the beginning of the process to start mine over.

So, I get Friday off from doctor visits and can try to have a normal weekend before I go through stem cell testing and orientation on Monday....

Keep the prayers and positive vibes coming!  I'll be here listening to the Sound of Music soundtrack, my go to happy music.   I need a happy goatherd.

Not phenomenal, just faithful

Over on my Facebook wall, as I've shared blog posts, friends have been very gracious with their praise of my attitude using superlatives such as phenomenal, inspirational.  I just see it as being faithful.  Here's what I posted on Facebook...

It's nothing phenomenal, just discipline and faith. You guys know I HATE hyposcrisy. 

How could I... 

• read the Bible all these years and believe those promises; 

• have this collect taped to my computer "Grant us, Lord, not to be anxious about earthly things, but to love things heavenly; and even now, while we are placed among things that are passing away, to hold fast to those that shall endure; through Jesus Christ our Lord, who lives and reigns with you and the Holy Spirit, one God, for ever and ever. Amen."; 

• stand in church each week and affirm my faith through the Nicene Creed or 

• say this prayer, "Send us now into the world in peace, and grant us strength and courage to love and serve you with gladness and singleness of heart; through Christ our Lord. Amen."... 

 And not trust God to work this out. Its put up or shut up time. I just don't let my mind go to the dark places. "What-if's" are the gateway drug to despair.

Every time I have my centering prayer, God tells me he's got this. How can I question when I see so much of his hand at work around me?

I heart kidney doctors

Well the big thing today was the chemo at 4 but my favorite part was my appointment with my nephrologist, Dr. Parikh.  When dealing with a serious disease, you want your doctors to be highly skilled medical practitioners.  When I worked at a teaching hospital in Jacksonville that had 13 medical residency programs, I got to know a lot of medical residents.  I found that the sub-specialties tended to attract folks who were more comfortable with the science than the patient.

After meeting Dr. Bhatt on Saturday and being so impressed with his knowledge, care and compassion, I wondered if there could be 2 equally competent and compassionate sub-specialty physicians within the same group.  Now, given a choice, I want the scientist but personality, care and compassion just add a dose of comfort to a stressful situation.  I got the whole deal with Dr. Parikh.

He was very knowledgable about managing kidney function for amyloidosis patients AND very friendly and personable, too.  I had a great appointment with him. He said there's nothing that indicates I'm at risk for permanent kidney damage.  He was very thorough and comprehensive in his review of my case.  He was clear about explaining what was going on and what we needed to do about it.  We joked about my ski trip and staying safe and we talked about the benefits of a plant-based diet and eating more turmeric and garlic.  Plus, he didn't stick me.  I didn't have a blood draw at this appointment which was the first in a long time.  He told me that Dr. Efebera did all the dirty work.

When he introduced himself to me, he said that he felt that he knew me because Dr. Efebera had told him so much about me.  He also said that Dr. Efebera was moving ahead with a great deal of urgency.  That made me really happy.

That urgency is evident by the fact that I have gone from diagnosis to referral to first chemo in 14 days....14 days.  It seems so incredible!

The chemo was really easy.  Went to the central point of my treatment, 2nd Floor James Cancer Center.  Checked in, they called me back, took my vitals and put me in treatment room 13.  Initially, I was superstitious about room 13 but then I realized, "Yes, 13 is unlucky....unlucky for those sorry amyloid proteins in my body!"  Got settled in, IV started, blood drawn, key values checked, meeting with pharmacist, anti-nausea pill taken, dexamethasone (super-duper steroid) given and then the real magic potion was delivered...

The nurse pushed it into my IV line.   We took out the IV, cleaned me up and home I went.  In and out in 2.5 hours.  The crazy thing about this chemo drug is that I have to take precautions when I pee.  Its so toxic that it could aerosolize when I flush the toilet and cause damage to any skin or mucous membranes with which it comes into contact.  So I have to close the lid and flush the toilet twice to make sure the toxic pee is gone.  Still wondering how I'll manage this at work with no lids and auto-flushers.  Alan and I joked about leaving a piece of poster board in the bathroom labeled with "Kathy's Toxic Toilet Shield" with the toxic symbol on it.  Maybe??

Right now, I'm feeling pretty good.  One of my strengths when I've done the Strengthsfinder survey (can't remember which one) said that once I see a course of action, I am restless and anxious until I see progress.  Today was a great deal of progress.  I feel great spiritually, emotionally, mentally and physically.

When Alan asked me how I was doing tonight, I said, "Really good."  He said, "Most people feel really anxious and irritated after taking dexamethasone.  It will be just like you if it makes you more productive."  I replied, "Makin' lemonade, I'm just makin' lemonade from the lemons coming my way."

Rough day...let's go Chemo!!

Today was a rough day.  My abdominal bloating was the worst its been in a while.  It feels...and looks...like I have a 10 pound sack of potatoes shoved in my abdominal cavity.  Originally I thought it was just fluid from my under-functioning kidneys.  Turns out those damn amyloid proteins are all through my stomach and intestines and causing edema there (just like you might get in your ankles) and within some of the abdominal lining...I think.  I'm not exactly sure where it is but its all blowed up, to quote Alan.

It makes me so tired and uncomfortable.  I call it my amyloid baby whom I will name Amy Lloyd which will be awkward since I already have a child named Amy but hey, if George Forman can do it, why can't I?

Anyway, I have my first chemo appointment tomorrow at 4.  Dr. Efebera said it will make me feel better....go figure.  From what I understand, this chemo will help clear out some of the amyloid protein that has built up in my tissues.  I have been trying to understand the biochemistry behind it.  I get some of it but most of how it works is way over my head.  So, in order to have a good mental image while the chemo is going on to spur the Velcade aka bortezomib, to do its job, I have come up with this mental image...

Yes, that's the arcade game Galaga that took much of my time, money and possibly some career choices while I was in college.  I spent many hours with my friends Deb and Elaine enjoying an adult beverage while defending the galaxy.  So, I will see my little space ship Velcade going through my body zapping any amyloid protein that comes within its gun sights.  Of course, when I played Galaga, I usually had a beer or black russian sitting nearby.  Dr. Efebera said no alcohol until after the transplant so I'll just have to remember the taste and hope I can spur my gun ships on while totally sober.

I also have an appointment tomorrow morning with the Nephrologist to "get him on board" to quote Dr. Efebera's nurse practitioner.  I'm assuming its so he can have an understanding of my kidney function going into the high dose chemo that can cause kidney damage and to monitor my kidney function during recovery.  I told Dr. Bhatt on Saturday that I had the appointment with one of his colleagues, Dr. Samir Parikh, on Monday.  He said he would be at the clinic and would tell my nephrologist that he's watching out for me.  How cool is that!

So, up to this point, the roller coaster has been clicking up the tracks.  Tomorrow, I go over the first hill.  From what I understand, this one will be minor compared to the stem cell transplant hill.  But it's a start.

Hands are in the air!!  Let's go chemo!!

Getting to the Amyloid Oasis

Al and I spent the day at Ohio State attending the twice-yearly meeting of the Amyloidosis Support Group....which was conveniently scheduled 12 days after my diagnosis. It was great to meet other folks who are dealing with the disease and those who are in complete remission. I met a woman named Sandy who I said is my inspiration. She was diagnosed at 54 and is now in complete remission. She shared her contact info with me and told me to call or email if I ever had any questions or wanted to talk about anything. Another gift from God.

Spending the day with us were three OSU physicians actively involved in the care and treatment of amyloidosis patients.  Dr. Efebera (my hematologist/oncologist), Dr Udayan Bhatt (nephrologist) and Dr. Rami Kahwash (cardiologist).  These highly skilled and busy academic practitioners took more than 4 hours from their weekends to listen to each patient and answer questions with skill and compassion....regardless of how outlandish the question was.  It was so inspiring to see these physicians who give equal focus to the scientific side and the human side of medical practice.

I mention the Amyloid Oasis again (my iPhone's initial autocorrect for amyloidosis) because after hearing the stories today of folks going years without a diagnosis, I had the vision of wandering in this medical desert. Once you have an accurate diagnosis and an experienced team treating you, you're in the Oasis. Until then, you are out in the desert. I know I'm now in the oasis.

Many people had their treatment at the Mayo Clinic and the support group recommends going to one of the major centers for treatment, or at least to develop the treatment plan. As frustrated and skeptical as I've been of my medical care at points on the journey, I have no skepticism with Dr. Efebera or Ohio State. Her training, her involvement in Phase 1 clinical trials, her obvious commitment to her patients gives me total confidence. And those who know me well probably find that surprising given my mantra of "In God we trust, all others bring data." Well, I have all the data I need.

After going through the process to get diagnosed, I told Alan I don't ever want to live in a city that doesn't have a major medical school and teaching hospital. I've done a lot of reading about rare diseases since my diagnosis and, as much as we think modern medicine is checklists and flow charts, its still more art than science. In my field of Customer Analytics, we talk about separating the signal in the data from the noise. That skill is especially important in medicine and it requires experience and intuition (the art part of medicine). It seems to me that its like trying to listen to about 5 different radio stations at once and slowly but surely get tuned into the one that is most relevant. That takes lot of experience and is so subject to how varied the physician's practice has been, how long they've been practicing and, the biases and assumptions that creep into any analysis.

Having an academic medical institution gives access to specialists most experienced at seeing complicated cases and they have honed the ability to diligently work through all the possible tests and results to more rapidly find the signal amidst the noise. It was a wonderful example of strong, structured, problem formulation to watch Dr. Levin order the first round of tests and then iterate through results and subsequent tests to arrive at a diagnosis. Thank God he did.

In medical education, I've learned, they train physicians that "common things are common" which means your patient with the odd collection of symptoms is most likely an atypical presentation of a common disease than a classic presentation of a rare disease. Another saying related to this that guides physicians' diagnostic process is "when you hear hoof beats think horses, not zebras." When my primary care doc couldn't find the horse, I think she thought I was imagining the hoof beats. I'm so thankful that Dr. Levin ventured out, found me on my zebra, and a brought me into the Amyloid Oasis. And, I'm thankful I've got Dr. Efebera to guide me through it.

Just another in the long list of things for which I'm thankful.

My Stem Cells

This video that parodies "My Hero" does a good job of explaining a stem cell transplant in a fun way.

"My Stem Cells"