Archive | January, 2012

God is in the Details

16 Jan

(Fair warning:  This blog post could easily be titled, “The One Where Amy Abuses Parentheses With Reckless Abandon.”)

I have a habit of always deciding how I am doing currently based on how I was doing when I first became ill.  A good many of you who are reading this were in my life 17 years ago when my health took a drastic turn and I became a walking quadriplegic in a span of two weeks.  I lost almost a full year of my life when I was 17, spending my time in both physical and occupational rehabilitation.  I had to learn how to walk again, how to hold a pencil, how to feed myself and just about anything else you could imagine along the way.

I remember hours spent one afternoon with a stack of fifty sheets of paper and a green marker held loosely between both hands.  My fingers dangled uselessly and kept getting tangled together, making me toss the marker often and have to buzz a nurse to retrieve it (I was a youngster in a rehab hospital full of senior citizens.  I was every other patient’s surrogate grandkid and the nurses’ pet.  If I had to be in rough shape, I was in the best place to get good treatment.)  I wanted so badly to will my hands to write my Dad a simple two word note, “Perk Up.”  It was an inside joke between us and I meant it to say, “I love you and I know you would fix this in a second if you could.”  I sat in my wheelchair in that hospital room and went through the entire stack of nurse procured printer paper before finally managing the words.   Pre-schoolers would tease me in the schoolyard if they saw those two short words, written horizontally and filling the page with two lines.  It was the neatest my handwriting had been in weeks.

While I worked on that note, the mailman came to my room to bring me my daily stack of 20 plus cards (you all have had my back from day one.)  He saw me sitting there with my hands covered in green marker ink and the floor littered with my failed attempts.  His kind smile made me think that he was likely some kid’s favorite Grandpa.  He invited himself to have a seat across from me. He commented that he had noticed I had a lot of daily mail and then he asked me about the project I was so feverishly working on.  Ever proud of a quality comedic, yet tender, jab, I told him all about the story behind, “Perk up.”  He laughed (I’d tell you too, but you had to be there) and then sat there and opened each one of those envelopes for me, pulling each card out slightly so I could manage to pull it out myself (which I did with my teeth.)  This became a daily visit for me while I was in-patient and he became another one of the countless, and often nameless, cheerleaders I would meet along the way.

Since then, I have felt ill to be sure, but I have never been as disabled as that.  How can I complain when I know how much worse it could be?   Even as my body has been on this slow seven year decline, I have reasoned that I am still walking (mostly) and at least I am not confined to a wheelchair for my day to day.

I think that, because I can walk generally unassisted (I sometimes use a cane when very fatigued and also use a scooter or wheelchair for most extended outings) and because I can reasonably use my hands (though, my hand sensitivity is much as though I were wearing leather work gloves), I would often rather think that my MS is a good deal better than it could be than to think that it is all that bad today.  If there is a flaw to this thinking, it is that I often don’t take the long term implications seriously and likely wouldn’t have if it wasn’t for the recent and persistent prodding I have felt from the Holy Spirit.

On this past Monday morning Eric and I went to the imaging center and I had a 2 hour MRI that looked at my brain and complete spinal cord.  My kind neurologist asked me to come to his office with the finished scans that very day and he let me sit with him while he gave it a quick going over.  He will spend further time looking at it in greater detail on his own and his final thoughts should be available in a few weeks.

Upon looking at the first few views of my brain, he marveled at how low my lesion load was.  Indeed, he initiated his perusal of my scans with such marvel at the “mild” lesion load that I have to admit my gut reaction was to worry that he would continue to say, “In fact, this brain is pristine and you have just been a big whiny baby all these years about a little bit of nothing.”

My fears were not realized and to my “relief” he found some evidence of disease.  (Am I the only ambulatory MS patient who suffers this regular episode of absurd panic?)  The center of my brain showed a moderate amount of Dawson’s fingers (a kind of MS lesion along the ventricle-based brain veins that is so typical of MS that it has a name.)   I have some degree of scarring on my brain, though not nearly as significant as I would have thought, or have seen on other patients similarly disabled as I am.  He continued to scroll around and he spent a few minutes examining my right side parietal lobe.  I have a nickel sized lesion worth being concerned about there, he tells me.  (A lesion differs from a scar in that a lesion is nerves that are actively being damaged, while a scar is the aftermath.)  He said that we needed to keep a close watch on it and then said to me, “You are in a good place to intervene and prevent further disability.”

He continued to my spine where he commented, “Here’s where we see more activity.”  My spine had 3-4 lesions on it during his cursory look, as well as measurable scarring.  This explains why a number of my symptoms are in the family of spinal cord injury – my spinal cord is injured and it happened all by its own self.   It was at this point that he stressed two more times that I needed to intervene to prevent further disability.

I have to leave this doctor’s office scene for a moment to tell you why my brain’s appearance was so very incredible…

When I was first diagnosed with MS, I had a much larger lesion load on my brain than I do now.  On MRI, lesions look like cotton balls and my scan in Feb. 1995 was dotted like the cotton fields in Lubbock, TX.  It was, in fact, very easy for the doctor to determine a diagnosis at that time because it was just that clear.   A lesion load that large would indicate that the scar load today would likely be significant, and yet my brain was incredibly low on scars.

Two years ago a dear sister in Christ prayed over me that I would be healed.  Not even knowing that MS is a disease of the brain, she said while she prayed, “I am seeing a brain with wounds all over it and I see a skillful Artist’s hand with an eraser and He is erasing the wounds.”

Shortly after that prayer time with her and others, I began to feel a good deal better than I had since my initial recovery.  I started to go on long walks, going up to three whole miles in one go at it.  While I still was very aware that I had MS, I felt better than I ever had with it.  This lasted for about three months and then seemed to stop suddenly.  Almost over night I was again unable to walk long distances, my hands fumbled, and my pain level, which had gone from a 6 to a 3 on a scale of 1-10, was ramped up to a 7-8.

I believed that God intends to heal me of MS from the very day that I first heard the word mentioned in connection to me and I have not shied away from telling people that over the years.   I do not say this because I believe that God intends to heal everyone on this side of eternity, or because I think I am extra special and deserving of something that not everyone gets.  I simply feel it and believe just as certainly as you believe that Tuesday comes after Monday.  This level of faith is one of many comforts given to me by the Holy Spirit though this journey.  Having my body return to its former state of “works okay, but could be substantially better” did not change that understanding in my mind.  It simply confirmed to me that He is the Author of my healing and the Permiter of my sickness and that healing is going to come along at His decided upon time and manner.  Those three months were tucked away in my heart and felt like a heralding of things to come.

Now, let’s go back to the doctor’s office so we can wrap this up…

My neurologist is aware of my desire to go to Israel to receive chemotherapy and he only seemed concerned with whether I would be able to gather the funds.  He finished up our visit with one last admonition that I needed to intervene immediately with “the therapy of my choice.”  Based on tone and response, I can only speculate that he understands this to be a viable option, though I would not presume to speak for a man in his position on this public forum.  He is a well regarded MS specialist and it is no secret to any of his patients what his thoughts are about what course they should take.  If he didn’t think this was viable, I am convinced he would have not only said so, but he would have thrown in a jab at the “quacks who come up with this stuff.”  (Important side note:  It is extremely rare to find a neurologist willing to be vocally supportive of HSCT for auto-immune dysfunction.   Few will argue with the results of FDA approved research into this – all the same, they remain mostly silent.)

So, I left his office with a mixed bag of news.  It would appear that the disease is modestly active in my brain with only one active spot that immediately stood out.  This is not great news, but it could be drastically worse.  It also seems that God has protected my brain from the volume of damaging scars that so many experience.  This is gloriously great news.  My spinal cord is scarred and experiences the disease more actively than my brain.  I don’t suppose I have to tell you what kind of news that is.

Here is how I understood that visit: I am at a fork in the road with MS and I am lined up to either continue on with further disability or go the other way and show MS the door once and for all.

The hospital in Israel has accepted me for treatment.  In fact, they said I could come as early as January 16.  That is nowhere near my timeline, and I told them as much.  Though I don’t intend to leave next week, I am in a hurry to stop this disease while I am at this level.  Before I saw my MRI results, I believed that God was lining me up for a whole new season of renewed health.  The results are not a determiner of that outcome, but I feel they give evidence to His intervention.

I understand that man makes his plans while God makes His.  With that in mind, here is my personal timeline:

  • The hospital total cost is $94,000.  We have to wire this to them before they will schedule my six week session.  We would like to be able to send this to them by May 31.
  • Beyond paying for the hospital, we will need to raise funds for travel and accommodations.  We would like to plan to arrive in Tel Aviv on July 15 with intentions to begin the process on July 17.  Our estimated total cost for that is $25,000.  (Some have suggested that people can donate frequent flyer miles towards this goal.  We would be happy to accept such a donation.)
  • When we return from Israel, I will need to be closely monitored by a chemotherapy trained physician to see how my immune system heals.  I will also need intense physical therapy and further MRIs/neuro check-ups to determine my results.  We estimate this to cost $8,500-$12,000.
You will notice that this leaves some flex in our fundraising goal of $140,000.  This is to cover all the unknowns that will without question come into play along the way.  Any funds remaining will be donated directly to Northwestern University to further the stateside research into HSCT for the treatment of auto-immune dysfunction.

Because of your very generous donations up to now, I have been able to fund my baseline MRI and my visits with the neurologist.  Because of God’s great kindness, I was able to see a neurologist who paid immediate and thourough attention to my case.

Information on how to donate is in the upper right hand corner of this blog.  I know that there are a few groups of people working on fundraising events.  If you have an interest in such a thing, contact me or any member of my family.

Thank you for following along, for your prayers, and for your genuine enthusiasm for this endeavor.  I said from the beginning that this is going to be fun to watch and I believe that just as much today as I did then.  The task before me is no small thing and I don’t want to appear glib about the intense seriousness of the medical intervention I have chosen.  At the same time, I do not want to discredit God’s sovereign movement in all of this.  It has been a wonder to behold.

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Why Chemotherapy?

12 Jan

Let’s talk about stem cells and chemotherapy a bit, shall we?

There are two basic categories of stem cells:  adult stem cells and embryonic stem cells.  Adult stem cells have been used for decades in the treatment of blood disorders, certain cancers, and for auto-immune dysfunction.  Embryonic stem cells remain highly controversial for a number of reasons.  Aside from the obvious, embryonic stem cells have proven unstable and not useful using current medical standards.  As a former embryo myself, I can’t get past the “Soylent Green” aftertaste of embryonic stem cell use.

Among adult stem cells, there are three sources for autologous transplant (this is a donation that comes from the patient’s own body):  Bone marrow can be extracted by means of drilling into bone (usually the hip).  Adipose tissue is stored in fat and is extracted through liposuction.  Stem cells can also be drawn from the blood using a process called pheresis.  Much like a blood donation, the blood is drawn out of the patient and run through a machine that removes the stem cells from the blood and returns the blood back to the patient, minus the stem cells.

When I first began my search into what was clinically available for MS patients, I looked very closely at autologous adipose stem cell transplant with no chemotherapy.  My own understanding (seriously,  fact check me because everything I say is based on my own understanding), is that such a transplant offers MS patients a certain degree of relief from a current exacerbation and some amount of short term damage prevention.  The main reason this method did not appeal to me the more I looked into it was because the benefits are not very long term – patients return multiple times for treatment and must remain on MS maintenance medication.  If you are interested in this method, be very careful about the clinic you choose.  The only one I researched at any length was Dr. Paz in Panama.  It looks like a good clinic, though I have no personal experience with them.

It was not very far into my research that I learned about the ongoing trials in Chicago utilizing hematopoietic stem cell transplantation (HSCT), also commonly known (and easier to spell) as a bone marrow transplant.  What struck me as incredible about this method is that stem cells are not the hero of the story – the chemotherapy is.   The chemotherapy destroys the immune system and, in a way, shocks it into rebooting with fresh stem cells.  The human body is constantly in the process of creating stem cells, though not fast enough, so the bone marrow transplant is done to speed up that process.

There are two kinds of chemotherapy with HSCT that I could choose from: myeloablative and non-myeloablative.  Non-myeloablative is also called a “mini transplant” or “reduced intensity transplant.”  It is, essentially, half the chemo and half the recovery time of myeloablative chemotherapy with HSCT.  In myeloablative chemotherapy, the stem cells are given to the patient after strong chemotherapy because without the stem cells the patient will die – whereas with non-myeloablative chemotherapy with HSCT, the stem cells are given to speed up the healing process and shorten recovery time, even as researchers suppose that a patient could theoretically survive without it.

Following HSCT, regardless of the method of chemotherapy chosen, studies have shown patients to experience a 74% to 86% chance of stopping the progression of MS for ten years or more (there is good reason to believe that  it will last longer than that – even for a lifetime.  I am being conservative in my reporting.)  Patients no longer need maintenance therapies and carry on essentially disease free, with the exception of any damage that is not repaired and is deemed permanent.

I do not believe that chemotherapy alone will be the only tool in my bag of ninja tricks.  Diet plays a role, as does physical therapy and exercise.  I believe that, following chemotherapy, I will get a greater return for my efforts in diet and exercise.  Currently I am two steps forward and three steps back because the disease is not stopping.

My next post will contain information about my anticipated timeline and details of my recent MRI and doctor’s visit.  Thank you for reading and encouraging me in this journey.

The Big Picture

2 Jan

My grandmother died with one of the most severe forms of rheumatoid arthritis imaginable.  RA is an autoimmune dysfunction.  My Mother has lupus, also an autoimmune dysfunction.  You are here because you know that I have multiple sclerosis, an autoimmune dysfunction.  There is no question that genetics plays a key role here and that the women in particular in my family seem to be plagued by varying degrees of autoimmune dysfunction.  Worry is a waste of precious energy, but I must confess to giving every minor hiccup my daughter experiences more than a moment’s pause to wonder, “Is this it?”

Hematopoietic Stem Cell Transplant with chemotherapy offers the opportunity to shut down a broken immune system and reboot it with no memory of dysfunction.  This is not just good news for people with Multiple Sclerosis, as it is a therapy that has proven effective for a number of autoimmune dysfunctions.

There is some debate as to whether this effectively “cures” immune dysfunction, or if it puts into effect a strong remission.  My personal understanding is that the genetic floor that caused the disease in the first place is not removed by chemotherapy, therefore the DNA components still exist.  I understand this to mean that the disease is shut down, packed up, wrapped in miles of packing tape, and stored neatly in a dark corner of my body’s attic.  Just like in a horror movie, some unsuspecting environmental youngster might stumble on this box many years down the road and open it up, ending my remission.  While I understand this is a possibility, the results of research thus far have proven to allow two years of recovery followed by ten+ years of being disease free.  As far as I am concerned, this gets me all the way through my kids’ time at home with us.

Many have asked me why this therapy is not available in the United States, if it is so effective.  Currently, HSCT with chemotherapy is being offered under the direction of Dr. Richard Burt in Chicago.  It is very expensive and the standards to get accepted are strict.  (Again, for MSers following along: I’d look here first.)  He is in Phase III trials, the final step to making it available across the country.  The process is very slow because funding is difficult to come by. Adult stem cells are boring old news and embryonic stem cell research is where all the buzz is.  It is difficult to get money from investors when there is no money to be made and there is no money to be made in curing MS.

This research is patient driven. The kind of people who push for and invest in HSCT research are not people looking to make a dollar, they are people like me.   The only way to mainstream HSCT as a protocol for the relief of autoimmune dysfunction is if people like me keep demanding it, chasing it, and proving it.   I have limited funds that I can invest, but I am happy to invest my own body into the research that I believe will one day revolutionize treatment for the very condition which has robbed me, my grandmother, my mother, my cousins, and so many countless others.

I know that for many, I am the scrawny kid at the top of the very high dive, knocked kneed and daring myself to jump.   There are many who are watching me very closely, because as soon as I bob up to the top of the water and give the thumbs up, they are going to scramble for that ladder.  When you invest in my jump, you invest in their hope.

Timeline Goals

1 Jan

I understand that man makes his plans while God makes His.  With that in mind, here is my personal timeline:

  • The hospital total cost is $94,000.  We have to wire this to them before they will schedule my six week session.  We would like to be able to send this to them by May 31.
  • Beyond paying for the hospital, we will need to raise funds for travel and accommodations.  We would like to plan to arrive in Tel Aviv on July 15 with intentions to begin the process on July 17.  Our estimated total cost for that is $25,000.  (Some have suggested that people can donate frequent flyer miles towards this goal.  We would be happy to accept such a donation.)
  • When we return from Israel, I will need to be closely monitored by a chemotherapy trained physician to see how my immune system heals.  I will also need intense physical therapy and further MRIs/neuro check-ups to determine my results.  We estimate this to cost $8,500-$12,000.
You will notice that this leaves some flex in our fundraising goal of $140,000.  This is to cover all the unknowns that will without question come into play along the way.  Any funds remaining will be donated directly to Northwestern University to further the stateside research into HSCT for the treatment of auto-immune dysfunction.

Because of your very generous donations up to now, I have been able to fund my baseline MRI and my visits with the neurologist.  Because of God’s great kindness, I was able to see a neurologist who paid immediate and thourough attention to my case.

Information on how to donate is in the upper right hand corner of this blog.  I know that there are a few groups of people working on fundraising events.  If you have an interest in such a thing, contact me or any member of my family.

Thank you for following along, for your prayers, and for your genuine enthusiasm for this endeavor.  I said from the beginning that this is going to be fun to watch and I believe that just as much today as I did then.  The task before me is no small thing and I don’t want to appear glib about the intense seriousness of the medical intervention I have chosen.  At the same time, I do not want to discredit God’s sovereign movement in all of this.  It has been a wonder to behold.