A lot has happened for me in the past year, and not just COVID19!
My hair grew back…but like an alien! So, I’m rocking short hair for now, maybe forever!
We made a BIG move from Port Washington, New York in the middle of a pandemic and hurricane Isaias! We said some very hard goodbyes to really great friends!! Oh, and the sunsets on the water!! My heart!!
We have taken a break from our globe-trotting and landed back in Dallas, in a 22nd floor condo with a view to Oklahoma!
We are taking advantage of every minute being near family again and reconnecting with ‘old’ friends!
So far, Mike and I have managed to keep healthy as my immune system was rebuilding! Blood counts are great now!
I found an exceptional personal trainer that specializes in mobility issues! Shout out to Daniel at Special Strong!!
I’m on a 45-day streak of workouts in The MS Gym (online PT for MS)!! MS doesn’t take a day off, so I now battle the beast with NO DAYS OFF!
I have joined book clubs and Bible studies, and started painting for fun!
I found new doctors that I love, even a neurologist at UT Southwestern that believes in HSCT!!
But…I can’t wait to tell you about TODAY!
Before I give you my exciting update, let me fill you in on what led up to today. My recovery has had some really low points, mixed in with a few good days. Behind closed doors, I was getting depressed, disappointed and feeling defeated! I was struggling with extreme spasticity in my legs that was getting worse by the day/night! I started taking magnesium which helped, but only a little.
And to add insult to injury, I have fallen 3 times in the past few weeks! No real injuries, but it was a direct blow to my mojo! To make it worse, one fall was in public and then friends caught me once (almost a 4th fall). I called Mike (my HERO!) right after the almost-fall and cried. I confessed that I had started to grapple with the visions of a dim future. It was taking SO MUCH EFFORT to do anything! My positive attitude was getting harder to hang onto. I was losing hope. Yes, I know, the HSCT recovery is a 2-year roller coaster, but this felt different! This felt like a deep hole that I couldn’t claw my way out! I prayed, hard, out loud, the rest of the way home! My valiant efforts were not cutting it! MS is winning. I can’t beat this! I boldly begged God to intervene, while meekly trying to be grateful for what I could still do!
The next day I had a neurologist appointment. I usually put on my positive face for my doctor visits, but this time I laid it all out. She stunned us by presenting options! (The walking pill, muscle relaxers, botox shots into the muscles and a trial for medicinal marijuana.) I chose to start taking Ampyra again (the Walking Pill). I had stopped taking it right before HSCT and hoped I would never need it again. It made me dizzy and nauseous, but she countered that with a nausea med that I only needed for 1 day. As of today, I have been on Ampyra for 4 days!
So…that brings me to my BIG news! TODAY:
I didn’t need a cane, trekking poles or a wheelie walker!
Today! I walked SOLO and steady! Today I JOGGED, yes just a little, but still, it counts!!! Today, spasticity is just a hint, not the headline! (Check out the videos below!)
I don’t know what tomorrow will bring, but today I have HOPE!
All hope and all glory to God!
“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT
ps to MS’ers, good news! UT Southwestern is starting a trial for HSCT! Am I glad I did HSCT? Yes! Do I recommend HSCT? Yes!
Did that Turtle really win the race? I know I am only 1 month in, but this HSCT recovery feels like the turtle’s pace, so I’m counting on the story book ending!! Keeping in mind that each little SLOW step is progress!
Starting with severe anemia, it has taken me 4 weeks to get back to near normal counts. Still low, but I am on my way up and can feel the difference this week! With my compromised immune system, we have taken great pains to keep me from getting sick. And so far, we have been 100% successful!!
I have been VERY well taken care of by friends and family here in New Braunfels, TX!! We are all vigilant about avoiding germs and staying away from public places! Hand washing and hand sanitizer are used obsessively! I have a dedicated bathroom that is used only by me. All of my sweet caretakers wipe down light switches, door knobs, remote controls, car door handles, seats and seat belts daily, if not more often!
My outings are usually either to the hematologist for blood work (Dr. Zweibach), my primary care doctor (Dr. Pak), and my chiropractor, (Dr. Stamps)! I also visit both of my sisters homes, who have sanitized for me!! I do wear a mask when I go out in public and I am very careful with what I touch. Hand sanitizer!!!
My meals are carefully planned to avoid food poisoning. Most meals are prepared at home. Mike washes and cuts my raw veggies, all other meals have been carefully prepared and fully cooked. I have had meals from restaurants that is fully cooked, avoiding all raw veggies (no lettuce, tomato, raw onion, etc). Since the weather is now cooler, soup has been a staple meal! I have tried to stay with my WFPB+fish diet (OMS Diet) but I have added red meat to help with my anemia.
Pets? I have spent a little time around dogs while visiting my sisters homes. Both sisters have dogs and I pet them but I am careful to keep my hands away from their faces. Then, hand sanitizer! When I get back home to New York, this will be much harder to do with my own pup, Hank!
So…how is my progress?? It is slow, and each event is small but still worthy of celebration!! My appointment this week with my GP, Dr. Pak and his nurse Mari was very encouraging! They are huge cheerleaders for me and I wish I could take them back to NY! Their joy for my progress is the best medicine!!
Report Card: I can now shower standing up, and I don’t need to rest after to recover. I don’t have to take a nap during the day, although I do rest a lot. I now sleep through the night with almost 8 hours! I don’t lose my breath while having a conversation. I have only used my trekking poles the past week and have left my wheelie walker at home! I am very sturdy when I stand, without the ‘balloon-head’! I can close my eyes and lean my head back while standing without losing my balance or wavering!! (Think of rinsing shampoo IF you have hair!) It has been 2 weeks since I have had a MS Hug! I can walk unaided down the hall, in a straight line. I am having to re-learn the mechanics of moving my right leg to take ‘normal’ steps. It is getting better, but needs practice! My handwriting has improved due to less numbness in my right hand. The sensitivity to bright light is much improved and has reduced the need for sunglasses. I have no nausea which is more likely related to the improved balance and no more ‘fish bowl head’.
None of things by themselves seem huge (as I would like)! I wish I had grand things to report but, listed together, I can see progress! The picture I chose to attach on this blog is not new to me, but now I’m LIVING it!
Confession, I can swing from excitement to disappointment several times each day. I was more than a little discouraged last week, I thought I would skip through all the tedious parts of recovery and be out passing at least a few of the mall walkers by now! Nope! Mike listened and reminded me that this is a marathon and not a sprint! And that I AM rocking this! I also have friends and family and doctors and nurses that remind me how far I have come and I’m only at the beginning!
This journey is not easy, and it is long! (2 Years?) I am thankful that I am surrounded by encouraging and positive people that keep me on the right track or nudge me back when I waver, especially in the midst of the disappointments or stagnant times in the recovery process! I want to really seek and acknowledge all new things, no matter how small and insignificant it seems, and give each one the celebration it deserves!
“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT (emphasis mine)
My plan, if all goes well, is to return home to Port Washington, NY on November 18. I will still be immune compromised for at least 6 months and need to take special care to stay well. I can’t wait to see everyone, but please contact me in advance so we can make appropriate plans.
Oct 1, 2019 is officially my New Stem Cell Birthday! Today is only 1 week after completing the 28 Day Treatment in Mexico and returning “home.”
I have had a little time to process what all transpired over those 28 days, and thought I would share MY experience with those who might be considering this treatment, or have a friend or family member with MS. NOTE: just as there are no two MS patients the same, there will be no two HSCT experiences that are the same. This is ME.
These are my thoughts TODAY (and I hold tight to the right to change my mind at anytime!):
Do I see any improvements with my MS? YES I do! They mysteriously come and go, but it is very exciting to think that my body is trying to wake up! One thing I want to mention first is that while I was in Mexico I had a new MS symptom arise, The MS Hug. Still dealing with that but very mild.
My improvements: I stopped taking the ‘Walking Pill’ 4 weeks ago and can lift my right leg higher than when I was taking it. Less spasticity in legs. Drop foot is improving. Periods of less fatigue (however, my blood counts are still not at 100%). I did have one very exciting day early on in Mexico where I JOGGED, about 20 steps down the hall and back!! It briefly felt like I had my old legs back! If that is a tiny glimpse of my future, I am beyond thrilled!!
How am I doing 1 week after leaving Mexico? I still have low blood counts that has caused extreme fatigue. Each day they are going up, so each day is a little better. Before treatment I was a 4.5 or 5 on the EDDS (disability) scale. Today, I would say I am still the same. For those that don’t know me, before treatment I used no assistance in my home, but had progressed to needing a cane, trekking poles (for balance) or a wheelie walker for big events such as a Mets game. (I mean Astro’s!!!) During treatment, I needed a wheelchair. Chemo takes A LOT out of you! Today, I used my trekking poles to get around the house and to the car, and a wheelie walker for outings. I also just completed a Sitting Strong workout on The MS Gym. I know that building back my stamina is key and I am using extra precautions not to fall and have a set back. Do I want to do MORE? Yes, but trying to be SMART!
Was the treatment has bad or good as I anticipated? Yes and No! Sorry, this is a hard one. It went by fast, and I always felt I was receiving the best care with the quickest response time on the planet. Was it hard? Yes, sometimes is was tougher than I expected but I was never in a critical situation. I was at times more nauseated, fatigued, wiped out, or uncomfortable (used that 0-10 pain scale thing!) than I cared to be.
How did I make the decision to do HSCT? I won’t go into all the conversations I had with my husband (Mike), family and friends, but I can give you the steps I took to decide. You are not me, so do this your way.
First, as soon as I heard about HSCT I began reading everything I could find. I honed in on the Chicago trial and Mexico Cliníca Ruiz. Then, I discussed and prayed with my husband often for months. When we were ready, we added discussions with close friends and family. We got mixed comments as you can imagine. Then, I took it to my neurologist who was passionately opposed. (This is a big topic for another day.)
After plenty of fact and opinion gathering, Mike and I took a weekend away, just the two of us. We used this as a deadline for discussion. We would make a decision, and move toward it. If some new information arose, we would discuss it, once. Redecide, and move forward.
I didn’t qualify for Chicago, so Mexico was my place. They had only had 1 fatality in 700 patients. We had a real talk about that risk, and decision was made. The hope of a bright future (80% success rate of stopping MS progression, smaller but still worth noting chance of reduced disability in some patients that are responders), it was worth the risk. We booked treatment for Oct 2019. That was Feb 2, 2019.
That April, Cliníca Ruiz was holding an information conference in Houston. We decided to go and meet the main doctors in person. Get a gut check on our decision. At the end, Mike asked if I had any thoughts. This would usually lead to a day rambling of my thoughts. But my only comment was, can we get the treatment any sooner? We moved it up one month for Sept 14, 2019. (Being able to take our youngest son to college was a priority.)
We really didn’t discuss it much after that except to help friends and family know what was coming up. We didn’t ask opinions anymore. We explained and sent links to answer their questions. But then, something did happen. In July, Cliníc Ruiz reported the passing of a patient while in treatment. It shook us. That night, Mike and I had another visit to the ‘risk’ conversation. Again, we had peace, and didn’t discuss it again.
Cliníca Ruiz, Puebla or Monterrey location? Same protocol, same doctors, same Mayo Clinic education, same awards, same reputations. How to chose? In Monterrey, you cook your own food, in your own apartment. Mike should be a chef, so that was easy! And, chemo is administered in your own private room. I’m private, I liked that.
How did I prepare before the treatment? I committed to the Overcoming MS diet starting about 2 years ago, not perfectly, but as best I can. I exercise with a personal trainer 2x per week to keep my muscles strong, and do pilates once a week. The MS Gym is also in my rotation to be active every day. I go to a chiropractor once a week. I wanted to be in MY best physical shape before treatment.
Cost? Yes, this treatment is expensive. Insurance would not help. We had to pay cash in full, 2 months in advance. The treatment and care we received would be comparable to a private, exclusive treatment center for the rich and famous hidden in the Hollywood Hills that cost hundreds of thousands $$. We got more value for every penny than we ever thought was possible!!
My hair??How was I about the whole gong bald thing? Anticipating the first short haircut, 3 weeks before we left for Mexico, was the hardest. Immediately, I was fine with it. Now, all shaved short (my hair did not all fall out), I feel it says “yes, I’ve been through something! And I am brave. Better not mess with me! Ha, kinda kidding. But no, I didn’t buy a wig and haven’t felt the need to cover my head yet. But, it’s not cold yet! Cute hats will be in my winter wardrobe until I get some hair!
What do I anticipate for my future? I’m hoping to be in the 80% that stops MS in its tracks!! Anything more, is a huge BONUS!!! They call the recovery period, up to 2 years, a ROLLER COASTER! That sounds like it will be filled with twists and turns! Some days will be worse than others. Some days may be worse than BEFORE the treatment. Not to be discouraged! It’s a slow process, we won’t rush to conclusions. We will be patient, positive and have faith that God is in control, no matter the results! I don’t know the name of my ride yet, but I hope it’s something like Gentle Giant or Sleepy Ride, with no minimum height limits!!
Would I do it again or recommend it to my dearest friend? YES! No hesitation! Do it as soon as you can after diagnosis!!
Last thoughts for today: Let as many friends and family in on your journey (no matter how private you are) to support you emotionally/spiritually along the way! Dear friends, you all have carried us and loved us and we are so grateful to have you with us on this ride!!
Kim has started both daily blood draws (so the doc knows where her counts are at each day) and the second round of daily shots related to the stem cell protocol. Today was the first post stem cell transfusion doctor consult. The tone of the conversation was serious as her reaction to the chemo has been more aggressive than what is typical. She went into neutropenia right away and the chemo is still at work. This means that she will be in neutropenia for 3 or 4 days longer than most. The counts also indicated that her platelet levels are extremely low today. The nurse will continue to come to the apartment each morning so the doctor can track her status regularly. We also have instructions on when to call the doctor directly, 24/7, and what symptoms we are to be concerned about. If nothing changes over the weekend, we will see him in person on Monday and determine the next steps.
So, with all of this new info, she is expected to be tired and weak for the next few days. We intend to watch some football while getting a lot of rest, hydration, and relaxation. We feel we are in the best care in the world and have peace knowing that we are being carefully monitored every step of the way.
Things we are hoping for is an uneventful weekend and some positive feedback on Monday. Thank you for your continued thoughts and prayers, we are living on them.
At approximately 3:15 pm CST, October 1, 2019, in Monterrey Mexico, with the help of an incredible group of Doctors (hero’s), Nurses (angel’s) and unbelievable support system (warriors) from around the world, I am happy to announce that Kim welcomed into her body approximately 3,000,000 baby stem cells that have no memory of the MS disease. “HAPPY DANCE!” This is a huge milestone and we are still floating on the outpouring of love and support that helped us through the toughest period of this fight against MS. We can confirm the promise that in fact “Weeping may last through the night, but JOY comes with the morning” Psalms 30:5b. We have so much to be thankful for.
So what happens now? Chemo is doing it’s thing by completing the destruction of her immune system, so that these baby stems can reboot a brand new immune system. Kim will go into isolation as her body goes into neutropenia. Her immune system will be at zero soon therefore it won’t attack the new cells coming back in. It is a dangerous few days were any small infection or germ or bug can be fatal. We will wear masks and gloves and not go in public unless it’s an emergency. Food prep is strict. They have a team that will come sanitize our apartment twice a day. They are serious about the process and in the event of a suspected problem, critical care is in place to quickly avoid major complications! They will test her blood daily in the apartment and when her counts reach a safe level she will be out of the danger zone, sometime within the next 6-10 days. She will have one dose of Retuximab infusion with one last IV and then will be cleared to go home. We fully expect to be on our flight Oct 12. She will continue on a special diet and on a compromised immune system protocol, similar to most chemo patient recoveries. She will see a hematologist regularly over the next 6-8 months. Her full recovery period is expected to be 12 – 18 months that will look like a rollercoaster with many peaks and valleys. Basically what this all means is, no news from us in the next 6-10 days is great news. If anything changes, we will let you know.
We cannot say it enough how grateful we are for each and every one of you and your unbelievable support throughout this entire process. What a difference you have made in our lives! We ask that you continue to pray as Kim moves through the recovery period and we long for the day when we can see each one of you face to face and hug your necks!
LOOONG day!! First, I went to bed on Saturday feeling confident and hopeful. Sunday had to finally be the day. Come on stem cells!! I wasn’t only the last in my group, but 2 were going to finish today. If my counts don’t hit the mark, they would have to change to a higher-powered med. I woke up before 6am with NO bone pain at all. Gut punched by overwhelming disappointment! I think I even tried to fake it! It is the big indicator needed so that we knew it was working. Suddenly, a BEAST of a meltdown hit me! I reached over and Mike stepped up to what he does best, he listened hard and held on to me gently. I began to pour out my despair that God was not listening, so many prayers, why is He not acting? Time is up, where is He?
Then, I saw my phone light up with a text. I decided to look. It was from a dear friend, “Praying for you as I watch the sun come up. Kim, he is big enough for us. For today. And for the days ahead.” It was like a wave of surrender flowed through me. I turned back to Mike and it all came rushing out. I had been confident in my research, preparation, pain tolerance tomboy grit, positive attitude and huge support network. And God would do his thing, I was sure He would. I was not worried. Until He didn’t. And all at once it came over me, Surrender! Give it all to Me!
So, I surrendered it all to Him. No, I did not suddenly get the bone pain. I had to get up and keep going, wondering. If I got disappointing news, then I would surrender again tomorrow.
The turn of events on Sunday were not normal. My counts were 3 times higher than they needed!! 3X!!! No pain!
Then, some unexpected news came that I need platelets and they would find a donor. Mike was a match! As you can imagine that was a huge relief. Mike was a trooper and happy to be put in the game! I had a good laugh when after he was told how it would work, he asked the Doc “Are you sure there is not a better way to do this?” Although, I shouldn’t have been surprised, this is the question that is the backbone of his career! The doctor assured him that it was the best!
Since it was Sunday, the hematology department was closed. This team was here just for us for over 5 hours. I counted 2 nurses, 2 doctors, 1 resident, 3 staff members and the Head doctor of the Clínica Ruiz! For those on the fence about choosing Monterrey, have no hesitation at all!
By 1:30pm, we were at the clinic for round 3 of chemo. They provided us lunch and got busy. My chemo had been modified to avoid the problems of the first two treatments. It was the first day in over a week that I didn’t need a barf bag! Struggled with a headache that was quickly managed.
By 7pm were back home. Long day! Wonderstruck by what had transpired! I’m so thankful for the melt down, it brought me right where I needed to be!
I’m thankful for the full day that was pouring in with support from all of you!! It does matter and it’s not a little thing what you are doing for us! We are humbled!
I’ll finish with a huge victory! I woke up early today for the last round of chemo! (I hope for life!) We had decided to test stopping my “walking pill.” I was pleased that I woke up feeling very strong. We then walked out our door into the hall and I told Mike, watch how fast I can walk! Like a speed walker! Then I thought, I wonder if I could jog? So, with my wheelie walker in front of me for safety I JOGGED about 20 normal steps! and jogged back!! I felt my old legs for the first time in 6 years! The feeling only lasted about 20 minutes, but I was back to my new normal without the walking pill. What a glimpse of what might be ahead!! All glory to God!
Chemo beat me up today, but I’m almost through it. Mike shaved my hair. I survived. Tomorrow is my Stemmie Birthday!! I will now celebrate October 1 as my new beginning!
Well as you see from the photo they have placed the Hickman (corrected term) Line which will be used from here on out to both harvest and transplant the stem cells and also to administer the final two chemo treatments. Although her neck is not that excited, her poor arms are happy that it should be quite a while until the last IV!
The update for today is that her stem cell counts have thankfully jumped up quite a bit in the last 24 hours and they are hopeful that tomorrow the counts will be sufficient to harvest. If they are not, then the next step will be to take a stronger medicine to mobilize the stubborn cells. If she is in a position to harvest, they will also administer the first of the last two chemo treatments tomorrow as well. So, we are praying that the current stem cell mobilization meds will work and she can get on with the harvesting and last two chemo treatments.
She is doing great and her spirits are high as she continues
to thrive off of all out your messages, thoughts and prayers. We are in a constant state of thankfulness
for all of your support and this journey would not be the same without each one
of you.
That’s it for today and we will let you know tomorrow as
soon as we hear anything.
Mike
“Well, this proves it. I am stubborn to the (bone marrow) core!” Kim
I’m back! Whew! First off, the care here is over the top, really, white glove service (ha!)! When we arrived we were given a Blue Bag chock full (shoutout to my Aussies!) of meds and a binder with a very detailed schedule tailored just for me. We were also given a White Box full of meds that are only to be taken if the doctor deems necessary to control any side affects. AND we were issued a phone with direct numbers to the entire team and instructed to call the DOC at any hour 24/7… and he answers before the first ring stops! We know, we have had to call every day so far. I’m sure I am his favorite by now!
The truth is I went ninja and overachieved on the water consumption during chemo Day 1. That caused big problems and a trip to the hospital. Back home, some problems lingered. The great news is that every symptom that came up, there was an answer in the White Box. That means I’m not breaking into new territory around here! So, today my body is acting ‘normal’ for me. Praise!
Now I have entered into the Stem Cell Harvesting period. It lasts 7 to 9 days depending on how quickly my counts rise. A nurse comes by my apartment and gives me a shot that pulls the stem cells into your blood from your bone marrow. Science is crazy! I have 2 shots, they’re not too bad. I can expect bone pain to increase as it really begins to do it’s job. I think the number goal is around 100 million cells, but I’m going to try and go ninja on this one! We will update when we reach our goal unless there is something new to report.
I wanted to add a few things I am thankful for! Little gifts from some friends to remind me of you, each message and ‘like’ that brings me memories of you, each song and scripture. I am also glad I packed my cozy throw blanket (missing Hank pup), my noise canceling ear phones, my soft eye mask and my PILLOW. Yep, high maintenance here! And as always the reasons to chuckle, like my toilet is so high my feet dangle and to get off I use the handles like dismounting a pommel horse! Aiming for a 10!
Ending with a text from a friend: ‘Come on stem cells. MULTIPLY AND BE BIONIC!!’ Amen!
We are very thankful she has been cleared to return ‘home’ and continue her protocol. Doctor believes the nausea should subside in next 24 hours, but believes she is improving nicely according to her latest test results. Thank you so much for your response to our requests for prayers. Besides her arms looking like a battlefield, she is in good spirits and up for continuing the fight. ❤️❤️
We spent the night at the hospital. We should see the doctor this morning, he is waiting on results of a blood test. She is no longer in pain and slept quite a bit last night. Her main battle is still nausea and a bit anxious to hear from the doctor. Specifically need prayers in regards to blood test and relief from the nausea.
On the schedule today she is supposed to begin the stem cell meds. Beginning today and through the next several days. She is hoping that this stays on track. Kim wanted you to know, after reflecting over the night and a walk down memory lane, the best part that has come out of all this so far is the bringing together of all our friends and family from childhood, college, San Antonio, DFW, Bolivia, Australia and New York. Each name brings such warm memories. God is good.
Will keep you posted as things progress. #thankfulforallofyou
Kim's HSCT Journey 