5 years already?!? May 30, 2018

Dang it HAS been a while since I have updated! Welp, let’s recap then shall we?  In 2016 I could tell that my walking distance had shortened. I could walk about 3 miles for the first 3 years post HSCT pretty consistently before my right hip flexors would start to fatigue. Something was not right. As the year went on my MS hug feeling returned with a vengeance and my cog fog was returning. MRI confirmed new lesions and so began the e- mails back and forth to Dr. F. His suggestion for Rituxan infusions was the first line of treatment. Fighting with my Dr. and Insurance company delayed the infusions for 6 months and I finally got one 500 mg. infusion. The reaction was scary ( rigors, tanking blood pressure, rash) all controlled by Tylenol and Benadryl . I decided to go on a quest for a new Dr. I interviewed 2 , and settled on the one closest to my location. Keeping a back up “sounding board” in my corner also.

The new Dr. and I decided on a game plan, following Dr. F’s advice at this point as well. Thank God this new Dr. had no problem communicating with Dr. F!!! So in December of 2017 I had (2) 1,000 mg  Rituxan infusions (2 weeks apart) and in June of 2018 I will have the 6 month dose of 500 mg.  I will have MRI’s in August. Hoping for no new lesions.

In this year, my walking has now gone to about a half mile. Climbing stairs or any incline at all makes things much worse. I have changed my work load, it is a constant battle between my will and my body. Working gives me purpose and joy. I am looking at other things to incorporate my time.

A second HSCT in Moscow is still on the table. It is not an easy decision to do it again. What if it fails again? The recovery time is daunting.  Would it be better to use the time doing worthwhile things while I still can? Whatever I decide, I know it will be done with the utmost respect for my family and my loved ones.

I have come to know that acceptance does not mean giving up. To me,  it is facing the storm and saying, “I will not be broken by you.” I choose to remain who I am. Ever evolving and learning to love in spite of the situation.

Hugs to you all.

2 years old! May 6, 2015

It is hard to believe that 2 years have come and gone since I was a newborn post HSCT’er. In that time the Moscow alumni has grown and the wait is about 2 years. Knowing that there are more hospitals around the world opening their doors to MS patients is a very good thing.

I have been able to get back to the gym, trying to find the balance between working hard and not tiring out my right leg too much. I learned the hard way by doing that my leg doth protest. 😦

I would say that the only MS symptoms that seem to be apparent are my leg weakness/pain at about mile 2,cognitive overwhelm- what I call it when I really have a hard time focusing on more than a 1 on 1 conversation.

When I am over tired I do seem to forget words and that makes me frustrated. I have the Lumosity app on my phone so I try to keep my brain learning new things.

I enjoy watching the new patients go through the hospital and blog about their experiences, there are some days I wish I was there. But, life goes on and mine sure is. Kids are growing, garden is planted, work is good.

If I was not on Facebook and part of the community of people supporting HSCT, I would probably not think of MS at all most days. 

Merry Christmas 2014 December 9, 2014

Hello! I wish you all a Merry Christmas and hope this New Year brings joy and good news.

I am  doing well and my MS is still in remission. Today all of my bladder issues are gone, no pinky tremor, no tingly/buzzing at all in my legs or feet. The cognitive improvement I experienced initially has waned a bit. I have to be a bit more careful in my paperwork for my business and am not able to track really fast conversation very well. But all in all, life is going forward without MS being in the forefront.

I admit I do get a bit nervous when I feel any kind of discomfort in my legs. I need to remember I am not 20 anymore 😉

I have some exciting news that OHSU (Oregon Health and Sciences University) is finally open to hearing what Dr. Burt has to say about HSCT. They had been resistant for some time. Dr. Burt is the Dr. heading up the clinical trials in Chicago and Seattle. Unfortunately when/if the trial is a success the MS patients that have PPMS will still be in the dark since the trial is for RRMS patients.(some SPMS patients have been treated outside the trial successfully) BUT it is one step closer to having HSCT be the primary treatment for MS.

I am eternally grateful to have had my treatment when I did since the wait to go to Russia is now about 2 years. I have been in contact with Dr. F to ask a question or just to check in, it amazes me how quickly he responds and that I can see his warm, compassionate nature come across the e mail after all this time.

I hope to do a 6 month “check in” for those of you who followed my treatment and want to know how things are going. Please have a safe holiday. Remember to hug those close to you, life changes fast.

xoxo

Tammy

Almost 1 Year! March 20, 2014

I apologies for not updating as often as I should. It’s kind of strange but I ask myself, “What is there to say? My M.S. has been stopped.” I think I need to put myself back into the position of so many newly diagnosed or people new to hearing about HSCT. Remembering how hopeless my situation was before I heard about HSCT, I can imagine others needing to know if it was successful.
In a simple word, yes.
The symptoms that have changed since treatment: leg pain/tingly/weakness gone. (If I walk for 2 hours there is some right hip weakness but recovery time is quick) M.S. “hug” reduced by 40%. Dorsiflexion of right heel (walking on the heel) is 20% better. Bladder function 85% better. Cognitive function 85% better. Pinky tremor nearly gone.
The treatment did put me into early menopause so I am just dealing with the lovely hot flashes that are manageable.

The National MS Society will have their annual fundraising walks in April, one is on my 1 year “birthday” of my new immune system. I plan to go to 2 that are near me and have my family wear T shirts that proudly display “HSCT ROCKS!”, my husband says we should make flyers to hand out since people will be asking questions. We may get harassed by big pharma reps but oh well, we are used to going against the grain in life anyway. 🙂

Our HSCT for Russia Facebook group is growing quickly. One of our members, Kristy Cruise, had her treatment documented by 60 Minutes/Australia and the word is getting out there. Woo-Hoo!!

Big Hugs everyone!

8 Month Post HSCT January 9, 2014

I am happy to report that I am doing really well. I get asked the question, “Is your MS gone?” quite often. My answer is “Yes, it has been completely stopped.” The hard part about that question is that although the disease is not progressing, the damage it has done is not gone- yet. If you imagine your puppy chewing on an extension cord and you put the cord away, it won’t have further damage but the cord will not be the same. This is what I live with daily. I am looking closely at the new treatments to remyelinate.
Most of the time I really forget that I even had M.S. It’s the long walks or days I am doing more that I notice I have issues. For example- Christmas shopping this year, I didn’t need a cane to walk the 2 hours of mall madness (yes, I am the day before Christmas shopper). Upon getting back into the car, I could not lift my right leg to get into the seat- I had to sit first and then swivel my legs into position. Not the end of the world but I get the Reba McEntire, “craaaap” sound in my head.
I do have the M.S. “Hug” that creeps in from time to time, the data shows that 12-18 months post HSCT is really where I can truly see how far HSCT has gone to stop my symptoms.
I am keeping my work day schedule to a 4-5 client maximum. That’s quite a feat for me but it’s the best for my body at this point.
In October and November I unfortunately struggled with what I thought were recurrent UTI’s. It turns out I was dealing with cystitis of the bladder. A side effect of the cyclophosphamide chemo medication, not uncommon and treatable. I had to get a second opinion in order to be treated, another reminder to continue to be my own advocate in the health care system.
It is exciting to talk with all of the people that are having HSCT done around the world. It’s a blessing to be part of their journey.
2014 will be a year of looking forward without fear. Kinda cool huh?
Big hugs to all!

6 Month MRI Report October 23, 2013

Since April 21 is my HSCT Birthday, I scheduled my 6 month follow up MRI after seeing my Neurologist. Unfortunately, her first response in walking into the room was, “So, you survived Russia.” She was not impressed with the gains in my leg strength and seemed to discount all of my improvements. It’s sad that her world view is so narrow. Maybe it has more to do with the fact that I won’t be needing to see her anymore. I don’t want to discount the seriousness of HSCT. The risk of death is between 1-3% and we all in the HSCT for MS community were shocked and saddened by a fellow forum member’s passing during her stay in India. She acquired an infection during the neutropenia phase and although she lost her life, many of us see her as a warrior who left this Earth fighting to stop this debilitating disease.

I received my MRI results yesterday and there are no new lesions (no enhancements too but I have never had any anyway). I will forward them on to Dr. F so he can see and be able to use them for data. I wasn’t surprised with the results since I think my symptoms speak for themselves. I haven’t made a mistake in my insurance billing since I have been back to work, I can hold my right leg up straight out in front of me in a seated position for 30 seconds and my left leg isn’t even dropping! (before HSCT my right would drop at about 7 seconds and my left started to drop at about 15) My left pinky rarely tremors. I do still have the MS hug from time to time and after 2 miles or so in running my right leg starts to drag. There are still some cognitive effects but NOTHING compared to 6 months ago. You see, HSCT STOPS the MS- the damage from the demyelination has been done, so communication between the nerves and muscles doesn’t work at 100%. There are up and coming treatments in order to restore the nerve sheath which would be awesome.

I look forward to the day when other people with MS don’t have to travel as far and pay so much out of pocket to stop this disease. Until then, I am happy to share my experience and look forward to giving updates as they come.

Hair We Go…. September 8, 2013

It is hard to believe it has been 4 months since my return from Moscow. I have now been back to work for a month, life has returned to it’s normal ebb and flow. My recovery period is going very well. I have been lucky enough to not get sick even though both of my kids have had the flu. I continue to make strides in my leg strength and although there are still some days that can be more difficult, it is nothing like before I left for treatment.

I received the call yesterday that my Grandfather had passed away. I am grateful to have been able to see him not too long ago. I got a little teary as he told me how he followed my blog and was very proud of me. I let him know that I got my stubborn streak from him and it has served me well. There is a difference in being obstinate and being told, “This can’t happen,” and me saying, “Watch me.”
I will see my Neurologist at the end of the month and I can not wait to see the look on her face when she sees me. I am hopeful that her tune will change with the proof that I have not only stopped declining but see clear evidence of gaining strength.

It is great to follow the other HSCT patients as they go through treatment. Knowing that the word is getting out and other MS patients don’t have to feel hopeless and helpless is amazing!

We will be sending our oldest off to College and as this stage of life brings about big changes for our family, the biggest change is that we don’t have the fear of MS hanging over our future anymore.

Big hugs everyone!!!

Independence Day Surprise July 10, 2013

My last post reflected the state of mind I had been in since coming home from Moscow. I woke up on the 4th of July and it was a beautiful sunny morning, the type of morning that made me decide “I’m going for a run.” Mind you, it had been at least 8 months that I last ran. My left leg would do the “Frankenstein” after my muscles fatigued.
I really had no goal in sight, just a test to see what would happen. Admittedly I was nervous. What if I couldn’t make it back to the car? Oh well, nothing gets done just by thinking about it. I didn’t set any records but I ran a mile! No problem walking afterwards at all- I had a smile from ear to ear 🙂
After getting home I convinced my Hubby and Son to join me on a walk/run/bike. (Hubby bikes, Son runs, I would walk) After setting out I was thinking, “Tam, just walk slow and if you tire out just head back to the car.” No point biting off more than you can chew right? Yes, I can see the eye rolls from those that know me well 😉 I ended up walk/running 3 miles!!
Naturally I felt sore the following 2 days but nothing like the leg pain I have had for 2 years.

I have lived my life with the uncertainty that MS brought to my future. How can I make plans if I don’t even know if I’ll be able to walk? Today I am allowing myself to have the confidence in making plans.
It feels strange to say,”I had MS” but that is the reality that I must have to put those running shoes on and get out the door.

I don’t want to paint the picture that everything is rosy. I still have the MS “hug” and I notice the overloaded feeling when there is too much going on around me. My hand tremors are still around but not worse. All these things I can deal with 🙂

I am completely stoked to get back to work August 1 so to all of my clients that are following my blog- give me a call and we can get you on the books!!

I will keep you posted after my first month back to work. Thank you all for your thoughts and prayers.

Big hugs 🙂

Checking In… June 26, 2013

Hi there, it’s been about 7 weeks since I have been home. I figured a little update was in order. My hair is starting to grow back, I kinda look like Pig Pen from Charlie Brown. I need to wear a beanie to bed since my head gets too cold at night. My Hubby has commented, “G’night Jacque” (after the beloved Jacques Cousteau) 🙂

Recovery is no joke. Patience is the mantra that I seem to forget at times. I tend to take one step forward and two steps back when it comes to gaining my strength back. An example would be me using the weed eater for about 15 minutes and not being able to use my arms the next day. I have a few weeks before heading back to work so I hope to do small daily exercises to gain strength back.

I am keeping busy by cleaning out closets and getting ready for a garage sale- out with the old and in with the new!
I hope that I have not come across as a Debbie Downer, I just want future HSCT patients to have a grasp on coming home and what they will be able to expect.
I have felt fortunate that I have been relatively healthy and able to spend some time with my family and friends.

The sun should be coming out here in the NW and that sounds good to me.

Big hugs xoxo

Hurry Up And Wait! June 1, 2013

I am 4 days away from the offical 1 month mark of leaving the Hospital. I developed yet another annoying UTI (urinary tract infection) and although it is cleared up now with antibiotics, I have an apppointment with a Urologist in a week or so. I did let Dr. F know just in case he had any additional recomendations.

My first hematologist appointment was uneventful. She was impressed with my experience in Russia and made copies of all the papers Dr. F sent me home with. She explained that I would get a blood draw and come back in 3 months for another if nothing looked amiss. At the first sign of fever- call her or go to the E.R. I will have a test a year from now to check for antibodies in my blood so we can determine if there are any immunizations that I need to have again. She said my hair will start to grow in about 2 months.

I am still experiencing symptoms that are worse pre-HSCT. This is still “normal” for this phase of recovery, but at times scary for me. I have been taking cat naps around 2 p.m and then doing the “couch twitch” around 8 p.m. Those of you unfamilar with that term is where I pretend to be watching a program on T.V. while having uncomtrollable twitching movements because I am FALLING ASLEEP. Much to my husband’s dismay. I get the look of, “Just go to bed sleepy head”, but I give him the shoulder shrug and look of, “But I reeeaaalllyy want to watch Master Chef!” Funny how we can communicate with thought bubbles above our heads huh?

I took a walk today, the longest since I have been home. Right now I just feel a little “wired”, like I drank waaaay too much coffee and my body is humming. I will take a nap after I get some lettuce I bought into the garden. The sun came out and we NW people are like moths to the flame when that big orb is in the sky!

I am keeping track of my symptoms so I can look back in a month and compare. I have put all the weight back on that I lost during treatment. I also completed 4 minutes on the recumbant bike on Monday, and Wednesday I did 5 minutes. I will try to do that at least twice a week and hopefully work up to more.
I am still in contact with Jeff and Brooke. I don’t think you could go through this experience and not stay in touch. I will figure out how to post their blogs on a side bar or something so many of you can look at their blogs too. I have not found 1 experience that is the same as any other so they are worth reading!

Thanks for continuing to follow me and I will keep you updated as I can.

Big Hugs!!