Round One…Tysabri
Finally, all the moving pieces required from the wonderful world of managed care, aka, Capital Blue, (required appointments, lab work, precertification for specific infusion center, and my medication) I was cleared for my first infusion of Tysabri!
It’s been several months of uncertainty, doubt, fear, and yes, why me? Why do I have to endure this progressing? Why do my everyday tasks, like showering, getting dressed, cooking, and household chores take forever? Is this ever going to get easier, Lord? I’m really so sick of being sick!
One of my biggest adjustments has been having my license revoked. I understand the why, but I needed to mourn and live with another loss of my independence. It was time to gracefully accept help from others. This was difficult for me. I always enjoyed helping those in need, not reversed. As my BFF is quick to remind me, “Don’t take away the joy from those who want to help you.” Ugh! Does she have to be so right?!?
Hubby and I feel so very blessed with the overwhelming offers of help for transportation, meals, shopping or anything we might need. The love, support, and care we receive from our family, friends, and church members has been amazing. I can see the peace overcome my hubby as well. He can go to work knowing I’m in good hands. Priceless for me!
Of course, the first date available to begin treatment, hubby had to attend a mandatory conference for work. I really wanted to start treatment asap and hoped he didn’t mind not being there…he agreed! Yes!!! Today was one of those days where my newfound friend from church, Allie, could take me for my first infusion.
We arrived at the infusion center, checked in, and patiently waited for my turn. I found myself nervously smiling as I glanced around the jam-packed waiting room. I struck up a conversation with Grammy and Grampy sitting next to me (imagine that). “This is my husband’s first chemo visit,” Grammy shared with a smile. “We’ll be “infusion buddies!” An instant bond was made! They called my name. I quickly told Grammy and Grampy, “I won’t say good-bye, rather see you later!”
I was taken back to the infusion area. There I was greeted by my nurse, Pamela, who quickly seated me in a comfy La-Z-Boy type chair, complete with seats for my family, a TV, snacks and drinks of all kinds, and plenty of room for her equipment and meds. She made me feel comfortable and eased my nervousness!
Pamela inserted the IV into a vein and was ready to administer my first infusion of Tysabri. I quickly turned my head to look out the window. She asked, “Are you okay?” “Yes, just can’t watch!” She chuckled and carried on sharing her routine information. “The actual infusion would take one hour and we will keep you an additional hour to watch for adverse events or allergic reactions (skin irritations, heart issues, dizziness, migraines, to name a few.)”
Like any MSer, you can take a nap anywhere, anytime, and so I did. That’s when I heard a voice, “Excuse me?” I promptly opened my eyes, and there he was, hubby!!! Was I ever surprised!!! He came to visit during his lunch break and brought me a bonus snack…a dark chocolate, sea salt candy bar! As he knows oh so well, everything is better when chocolate’s involved! Love this man!
My medicine was infused, my hour of observation was complete, with no adverse events or allergies noted! Pamela removed the IV, scheduled my appointment, and provided discharge instructions all with a smile. “You have no limitations…go home and enjoy your day!” “We’ll see you next month!”
I did it!!! Really wasn’t that bad after all! With a few more infusions, I should be able to see if Tysabri is working. I keep a daily journal to record my physical status, accomplishments, and monitoring of my symptoms: are they stabilized, improved or worse? Paints a clear picture for my doctor and me through this treatment.
Counting my blessings for this option to try. God remains oh so good!
A Kid in the Candy Store ~
Nothing beats the aroma of my kitchen filled with fresh produce and herbs each week from our local CSA (Community Supported Agriculture). With CSAs, consumers contract with their farmers to receive a share of their weekly, organic harvest. We’ve been members for nearly three years now and love it!
I tend to be a kid in the candy store, anxiously anticipating each week’s share. As we arrive at the farm, I find myself smiling as I watch the cattle grazing, the pigs racing thru the pasture and the chickens, well, their pretty oblivious to their surroundings. Into the barn we go to pickup our goods. Take a look at this week’s harvest:
This time of year screams tomato overload. Never a problem in our home. Today, I’ll be making Roasted Tomato Basil Soup (recipe compliments of foodnetwork.com) Hubby loves this! A technique that I learned (thank you pinterest) is the flavor you can achieve with roasting veggies. Never disappointed! While this soup requires just a few ingredients, combining several pounds of fresh tomatoes, fresh basil, onion, and yummy garlic, you know a home run is in the making!
Here’s what you need:
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2 1/4 lbs. Roma tomatoes, halved lengthwise
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1 1/4 lbs. Cherry tomatoes
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4 1/2 T. EVOO (I use Garlic infused)
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Salt and freshly ground black pepper
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8 cloves garlic, peeled
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2 small yellow onions, sliced 1/2-inch thick
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2 C. lightly packed fresh basil leaves
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4 – 5 C. vegetable broth
Directions:
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Preheat oven to 425 degrees
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Place tomatoes (Roma, cut side up) on a rimmed baking sheet. Toss with 3 T. EVOO, season with S&P
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Place onion slices and garlic on a rimmed half sheet and coat with remaining 1 1/2 T. EVOO, season with S&P
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Place baking sheets with tomatoes and onion/garlic into oven. Roast onion/garlic 30-35 minutes until edges are golden, tomatoes 40-45 minutes until golden
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Peel away any burnt layers of onions if necessary
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Pull peels from tomatoes (if not using a blender to emulsify)
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Pour onion/garlic and tomatoes into a large pot (or combine with tomatoes in blender)
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Add 4 C. vegetable broth and basil. Season with S&P to taste
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Bring to a boil, reduce heat, simmer 20 minutes (minimum)
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Add additional 1 C. broth to thin as desired. Blend soup with an immersion blender if you did not emulsify previously
So simply and delicious! Place soup in a bowl, top with basil, croutons, or sour cream, take your choice. If you happen to have leftovers, this soup freezes really well!
Enjoy!
“Count Your Blessings”
MS Breaking News
Been an interesting week here as I battle the wonderful world of managed care with one goal in mind…precertification! Without it, Tysabri infusions will not occur.
Meanwhile, I received an alarming email I had to share. MultipleSclerosis News Today headlined: https://multiplesclerosisnewstoday.com/blog/2016/08/15/cvs-drops-big-name-ms-drugs-from-2017-formulary/.
I personally have CVS Caremark and verified the truth behind this article. It appears treatment decisions made between doctors and patients could be compromised by prescription carriers. I’m sickened!
Often when one carrier begins this trend, others will follow. Does this effect you? Contact your personal prescription carrier, check their formulary (usually on their webpage), and follow up with your neuro’s office if needed.
Please don’t hesitate to ask any questions you might have. Together, I’m sure bloggers will unite and share resources or options that could be helpful! We’re in this together!
“Count Your Blessings”
Moving Pieces Coming Together…
Such a busy month here with PT, doctor visits, and practicing my patience (does that ever get better) while awaiting “3-4 weeks” to receive the results from my recent blood work. My “Now Whats” were literally hinged upon these results as we decide the next treatment for my MS progression.
Week four and still no call with results. As the early evening approached, it was break time (that’s right, time to kick back and give the body a rest) and catch up with the daily news when my phone began to ring. The caller ID read, “David Jones, MD.” This was it, I thought. The blood work results are finally in. I quickly grabbed my list of questions (which I’ve been carrying with me everywhere), took a deep breath, and answered the phone. We exchanged cordial greetings before cutting the the chase, his findings.
“Based on the results, you’ve been exposed to the JC virus.” An important piece of information when considering the magnitude of risk for his drug of choice, Tysabri. He explained, ideally, you don’t want to see JC virus exposure. My test result was minimal at .75. High risk range is .9 – 1.6. Therefore, I have a 1-10,000 chance of developing PML (progressive multifocal leukoencephalopathy). Translation, brain suffocation or death. We certainly did not expect these results and thought our decision was easy, NO! Dr. Jones thought differently. Let the dialogue begin.
Following several phone calls, lots of questions and conversations, it became clear this was what I needed to do. Hard to believe we would even consider such a treatment, don’t you think?
David E. Jones, MD University of Virginia
Dr. Jones shared:
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He was concerned about the my recent relapse and progression seen on my spinal MRIs in comparison to previous studies
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He was surprised to see me in a wheelchair when entering the examine room
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He felt the risk was worth taking. If not, I could still develop the same results with disease progression
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If I was his family member, he would recommend the same treatment
Compelling case. He outlined his plan of action:
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I will be followed by his colleague here in PA
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I will be assigned to an infusion center that specializes in the infusion of Tysabri, complete with two MDs on staff to monitor my care and status
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I will have frequent blood work and MRI protocols to ensure the virus, brain, and spine remain within safe limits
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I will alternate follow-up appointments every three months between him and PA neuro. In the meantime, he will be in contact with the medical team here in PA
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“I’m one phone call away for any questions or concerns from you or the medical team.”
I believe this huge decision could only be made with complete trust in Dr. Jones. For nearly ten years I was privileged to have him as my MS neurologist, as well as, being paired with him for patient education programs through work. We got to know him on a personal level. Coincidence, I don’t think so. God knew what He was doing all along. That’s a beautiful thing!
And so, all the necessary paperwork, labs, and coordination of care are underway. Within ten to fourteen days, my first infusion should begin.
From my heart, please remember my blog is solely to share my personal experiences, thoughts, and ideas. It is not my intent for readers to feel uncomfortable, troubled or even scared with the unpredictable realities I face with MS. I encourage you to reach out to your medical team with questions and concerns you may have. Together, you too can make good, educated, decisions to be the very best you can be!
Be well and make it a great day!
“Count Your Blessings”
Unraveling Continued…
The unraveling of my “Now Whats” continued. This week, we ventured down to the University of Virginia to see Dr. David Jones. My long time MS Neurologist here at home until assuming his new role at UVA several years ago. I can still remember the day he told us about this big move! He was excited! He shared he would now be doing research, teaching the next generation of neurologist at the university, and clinically see patients. For years, I was privileged to work alongside him at patient education programs with my previous employer, MS LifeLines. He was the neuro, I was the patient living with this unpredictable disease. His passion for patients was always obvious. It was an easy decision for us to make the trek to see him and get honest feedback on my current status.
We planned to arrive in Virginia the day before our appointment for a well-deserved getaway. Hubby booked a place for us to stay at the Clifton Inn, a beautiful 100-acre gem in Orange, Virginia. Added bonus, he had a 40% off coupon with Expedia! Our room was just breathtaking. Once a horse stable, now beautifully converted into warm and comfortable guest room, complete with a fireplace and a deck overlooking the lake. Hospitality didn’t skip a beat as we were greeted with freshly brewed hot tea and cookies! As you can imagine, I couldn’t stop smiling! The next morning, we explored the property (owned by Thomas Jefferson’s daughter in the late 1700’s). Gardens could be found throughout the entire property. They even had a veggie and flower garden specifically grown for the in house chef and inn arrangements. Interestingly, an electric fence was in place ready for unwelcome guests!
We quickly had breakfast and headed for my appointment. Hubby dropped me off at the main entrance. The volunteer was ready with his wheelchair and whisked me into the lobby while hubby parked the car. People were hustling everywhere as soothing music played overhead. I was pleasantly surprised to hear a piano version of “Our God is An Awesome God” throughout the lobby! Love that song! You know what that means…I began humming to the tune, then singing, when I noticed a woman sitting on the bench looking at me. Imagine that! I simply smiled and said hello! She stated, “I love that song and was glad to hear you do too!” The conversation continued! Are you ready…she was from Lynchburg, Virginia!!! What!?! We shared our connection to that area, Liberty University, where our now grown children went to college. The beauty of meeting people when out and about! Before I knew it, hubby came through the doors smiling and shaking his head. I quickly introduced him to my new-found friend, Ms. Aubrey, and shared our commonalities. Some things just don’t surprise him. He happily embraces my willingness to reach out in conversation to strangers! Love that man!
We proceeded to the 4th floor, registered, and were taken right back! Dr. Jones opened the door with, “there’s my rock star!” “I just received an email with a quote you recently made.” Long story short, a new organization had been established, Spasticity Alliance. I loved the education and information this site provided and had to send an email telling them so. Dr. Jones apparently was on their MS Medical Advisory Committee who reviews emails received. There you have it…explanation for his comment to me.
He spent 1.5 hours with us listening to our concerns, answering our questions, reviewing new MRIs and educating us on his recommendations and options. The MRIs of the spine are ugly. He shared his thoughts for treatments in light of my recent flare. Namely, several big guns: Tysabri, Gilenya, Lemtrada, and Rituximab. These all have the usual side effects plus significant risks (including death) involved. To lessen the possibility of these risks, extensive blood work is done to see if I’m a potential carrier to develop specific viruses, conditions, etc. Of course, the gamete of emotions flooded our minds. We were, quite frankly, petrified. The results should arrive in about three weeks making our decision on how to proceed clearer.
In the meantime, we are researching the top four choices. Certainly, these are not a cure or will repair the damage done, but statistically may improve and/or stop progression of disability at this juncture.
Needless to say, prayer chain alerts are out specifically for strength and openness to make good, educated decisions for treatment. Remembering, with Him, we can do this, allowing His plan to be revealed!
Know I will continue to work hard to be optimal and will never give up! I am blessed in so many ways!
“Count Your Blessings”
“Now What’s” Unraveled
It’s been a rather busy few weeks in our neck of the woods. The continual rain has subsided allowing the many benefits only mother nature can bring this time of the year. The birds are chirping and nesting, the flowers begin to bloom and yes, our defiant groundhog made her grand appearance from her sleepy slumber! As for me, I continue to unravel the “Now What’s” from my recent flare.
Have you ever come to a new and scary time in your life? Were you able to make the necessary changes to adapt to your “Now What’s?” I’m actually pretty surprised at how well my transition here at home is going. I’m beginning to recognize and embrace my current challenges, tools, and to dos God has set before me.
My Definite Tools ~
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Shower Chair: This simple tool provides me the opportunity to shower while not worrying about falling and most importantly, conserving energy.
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“Winnie” Walker: My new-found friend replacing my cane, for now! This compact, 3-wheeled rollator, complete with a basket, allows me the ability to maneuver around our home and out and about safely. I quickly recognized I wasn’t as fatigued! Bonus!
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Scooter: This four-wheeled gem, complete with horn, allows me to enjoy activities when walking longer distances. This wasn’t the easiest mode of transportation to accept! Initially, I needed the security of my sunglasses before I would considering using the scooter in public, otherwise, no way was this happening! I couldn’t handle the stares. Now, it just doesn’t matter. I needed my scooter. I’m able to have an option that allows me to do what I love, quality of life, isn’t it? Finally, I ditched my sunglasses! I simply share a smile, say hello, and keep motoring along. As my hubby put it, “the scooter allows us to do what we enjoy, like walking in the park with our puppers, together!” Love this man!
My Definite To Dos ~
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PT: Outpatient and at home. No doubt, in an effort to regain optimal strength, balance and endurance again, I need to be disciplined with daily rehab to see what progress can be made. I have outpatient PT twice a week while following an at home daily schedule. My BalanceWear Vest received its tune up, adjusting weight location for my current needs. I ‘ll share soon about new tools they are trying too!
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Diet: As things begin to settle down, it’s time to start the Wahls Protocol again. Although I realize this is not a miracle cure for my MS, I know I can’t go wrong with healthier eating, supplements, and lifestyle changes. Remember, it’s so important to continue all medications your physician has recommended! Please consult with your physician before beginning any diet, supplements, etc.! 🙂
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MS Neurologist Follow-up: As requested upon discharge, we will pay a visit to my neurologist to review current MRIs (brain, cervical and thoracic). In light of my recent flare, we will also discuss if my recent switch from Rebif to Copaxone is sufficiently protecting me from MS activity. He’s just returning from a MS conference in London…we can’t wait to talk to him! Stay tuned!
God’s miracles of nature are found in the simplest of things – the baby birds are getting ready to leave their nests, the flowers are bursting with all their beauty, and our groundhog babies will soon appear. All reminders that with a little tender care and nurturing, it’s possible to make the necessary changes to reveal your true potential. What will you do?
“Count Your Blessings”
Home Again, Home Again!
Home again, home again! The simple pleasures of life for sure! My temporary home for three weeks at Bryn Mawr Neuro Rehab Hospital was well worth the stay. I didn’t think I would ever say that. The days were long and demanding, allowing for necessary rest and of course, time to eat…and eat I did!
With this busy schedule, I really didn’t have much time to think about the long day or the projected length of stay. In fact, they originally thought I needed 3-5 weeks of “acute” therapy to safely be discharged. Rest assured, I did everything they asked while keeping their common goal in mind…MOD I…Moderate Independence.
Each morning began at 5 am with meds, breakfast, the nurse dressing you, and wheeling you to the sink to prepare for the day. It wasn’t long before “transportation” would arrive and wisk you off to the gym for therapy. Upon completion, your therapist parked you at the “bus stop” aka, waiting line, for your transporter to take you back to your room.
To be honest, the first week truly was the hardest. Not necessarily the therapy, but my raging emotions and thoughts were constantly on my mind. I was trying to wrap my head around what was going on? What progress could actually be made? Would I be able to get out of my bed? To ditch the bed pan and use the commode? To shower? To dress myself? Was I being realistic or in denial? What? What? What?
All I could do was pray without ceasing. My saving grace. I needed to turn this hardship right over to Him and trust He knows exactly what He’s doing even when I couldn’t begin to understand…again!
I knew this mindset would sustain and encourage me to think positively and do what needed to be done. All I wanted to do was to get better, get home to my husband and dance with my son at his wedding. Let the therapy begin!
The Schedule ~
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PT (Physical Therapy) – Typically consisted of ½ to 1 hour sessions throughout the day. Their primary focus was building strength, walking, managing steps, adjusting my BalanceWear vest to help with balance issues, building endurance and strategic use of the walker. This was a starting point. I went from 20 steps with a walker on admission to 225 steps upon discharge. Progress!
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OT (Occupational Therapy) – Consisted of ½ to 1 hour sessions too. Their focus was to provide tips for every day independent living. I learned exercises for my upper body and hand strengthening, lots of tips while having therapy in their “apartment.” Cooking in the kitchen – yep, went through the strategic planning to make a grilled cheese while conserving energy and using a walker. Aides to help with safely using the toilet and a shower bench (I found the bench allows me to really conserve energy). One great tool was a “leg lifter” – allows me to get one stiff leg, that refuses to bend, into the bed on my own! That’s what I’m talking about!
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RT (Recreational Therapy) – Consisted of 1 hour sessions 2-3 times a week. I quickly learned why this therapy was scheduled – fun for the patient. We all need a break and this was perfect! Activities included going to the horticultural center. My favorite, digging in the dirt. The group would transplant veggies and flowers while standing/sitting to work on strength and balance. Visit with the therapy dog support team – smiles abound for all attendees as they enjoyed time with these amazing dogs. Finally, a field trip! “What? I asked.” She responded, “A change of scenery is always good and gives you an opportunity to practice using your new found friend, the walker .” They helped by providing tips to get in and out of a car, managing sidewalks, opening doors to business, and everyday life skills. At first, I wasn’t sure this was really necessary, but I found it rather helpful. Our destination? Dunkin Donuts! One of my favorite places. Iced mocha coffee provides great incentive!
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Brain/Spinal Cord Trauma Education Series – I really had no idea what this meant or how I would benefit from attending. I was game! Afterall, it was on my schedule so it must be important. That it was! A psychiatrist headed this small, intimate ”support group” of patients with varying conditions: Parkinson’s, Stroke, MS, and GBS (Guillain-Barre Syndrome). We discuss our fears and concerns, management of respective disease, and everyday coping tips.
SO I HAVE MS...now what? 
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