Here Comes 2016


DAY +1329

Here it is, almost the end of 2015.  Another year of incredible wellness.  I continue to get checkups every three months.  The frequency of these checkups is due to receiving a haplo-allogenic (half match) bone marrow transplant in 2012.  Hopkins performed these transplants on a few hundred patients who they are following closely.  Since I am a part of that clinical trial, which began in 2011, I welcome the frequent monitoring.

I had cataract surgery performed on both eyes in September.  It was very much needed – it had been a very blurry couple of years.  I was told that all the chemo and medications I received would speed up cataract formation, and it certainly did.  The surgeries went well, and the world is clearer and brighter for the most part.  However, I still have problems with GVHD (graft vs. host disease) in both eyes.  When it flares up, my vision becomes blurry and I feel grittiness in my eyes.  I have steroid drops to use when this happens.  Most of the time they help, but not always.  I am hoping that something better will come along.  I am told my eyes aren’t “bad enough” for those Prose Lenses, which were developed a few years ago for people with severe eye issues.  They are expensive, about $10,000 per eye, but some insurance companies will cover the cost.  I know a BMT survivor who has the lenses now, and has experienced instant and total relief.  We’ll see what this coming year brings.  How bad is “bad enough”?  As an artist, I need to SEE — really well!

I still have flare ups of skin GVHD at times, mild rashes, but I have been able to manage that with steroid creams.  I have noticed that when I feel stressed and anxious the rashes appear, especially when I’m due for a doctor’s appointment and blood tests.  I try to remain as calm as possible day to day, but the anxiety sometimes wins out.  I’m also not sleeping as well as I should.  I resolve this coming year to try and do a better job of getting more rest and managing stress/anxiety.  I also resolve to get outside and walk!  Fresh air!

This is the fourth Christmas since my BMT!  The miracle of being here to celebrate is still mind-boggling to me.  There are actual whole days that pass when I don’t even think about the transplant anymore.  I never thought THAT would happen.  But there is that nagging little gremlin in the back of my mind telling me not to completely relax.  The fear that it could all go south in the blink of an eye.  I suspect all cancer survivors experience this.  I really have to get control of the anxiety this coming year, and have faith all is well.

I have been extremely fortunate medically.  There are some BMT survivors who have suffered from serious complications.  There are some wonderfully courageous people I’ve come to know on this journey, and I continue to send them my thoughts, prayers and positive vibes going forward.  I also thank family and friends who continue to be incredibly understanding and supportive of me.  I recently read in an NIH study that it can take up to five years for a BMT survivor to recover mentally from the procedure!  I can truly understand that.  We can feel very vulnerable at times, leading to anxiety and sometimes depression.  It’s good that we keep track of  ourselves mentally, and if we need extra help, to get it.

I know this post very closely resembles my last post, with a few exceptions.  But I wanted to make sure I  wished everyone a Happy and Healthy New Year.  Take care of yourselves and each other.




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Three and a half years!

DAY +1250    Kathy’s Update

It’s been quite a long while since I’ve updated this blog, but the old adage “no news is good news” applies here.  I can hardly believe that it will soon be three and a half years since my haplo-allogenic bone marrow transplant for CMML, a very rare leukemia.  My daughter was my donor.

The past eighteen months have been as normal, busy and healthy as I could have ever wanted. It’s very surreal to read this blog and travel back to a very scary time and think – did I really go through that?  I am truly one of the lucky ones. I have lingering mild GVHD issues which mostly effect my skin and eyes. The skin issue is managed with a steroid cream along with an antibiotic ointment.  There are mild flare ups from time to time.  Mostly on my face and scalp.

My eye GVHD is managed with either Lotemax (steroid) drops or an antibiotic eye drop (Vigamox).  I have severe dry eye problems at times, but was unable to tolerate Restasis.  I tried three times to use it, but it felt like I was putting acid in my eyes.  The “temporary burning sensation” lasted all day for me.  My eyes are very light sensitive and wind sensitive.  Even sitting under a ceiling fan can be irritating.  I wear wrap-around sunglasses all the time outside.

I just completed cataract surgery for each eye.  What an amazing difference!  It had really become a problem this past year.  There is always a concern that GVHD will flare up after medical procedures, and I did get a skin flare up for a few days.  I even get a skin breakout after receiving a flu shot.  My new immune system kicking into overdrive.

I still get regular blood tests at Hopkins every three months.  That’s often, I know, but my doctor wants to keep a close eye on my progress.  I don’t mind anymore, but I still get very nervous beforehand.  My mind always goes to that dark place of fear, where all might not be well.  I guess that fear will always be there.

This year, 2015, has been better than the previous two mentally.  It was very hard to transition from being a full time patient to a cancer survivor.  It was almost a feeling like – I don’t want to jinx this by feeling too relaxed or happy or even say the word “survivor.”  Very bizarre and illogical, but the anxiety is real.  I can finally say that days can go by when I don’t dwell on the experience or think about it anymore.  Sometimes it seems like eons ago, and sometimes just yesterday.

I think I have experienced a bit of PTSD at times, especially in 2013 and 2014.  Not serious, but something triggers a memory that is not so pleasant and I have to deal with that in my own way.  It has been a long journey that continues, thank God.  When other people who find themselves on this journey too reach out for help, I try to oblige.  I’ve been very blessed and I try to pay it forward in some small way.  Only someone who has been through this unique experience can truly understand.

I won’t wait as long to update in the future.  Life is good.

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Two Years Out! From Patient to Survivor

The journey these past two years has been long and challenging at times, but it has been a lot easier with all of you coming along with me. On May 10th, we had a party at our house in celebration of my second re-birthday since the bone marrow transplant. We thank you all who came to share that day with us. I can’t believe it’s been two years. Each milestone that is reached after transplant is a cause for celebration – surviving the transplant itself; the first 100 days; the first six months; the first year; and now two. A time when so much could go wrong, but thankfully in my case everything went right.

The re-birthday party was a wonderful day. It was great seeing people (family & friends) who have prayed and supported me (us) through this whole ordeal, and to be able to thank them personally for all that they did. I am convinced that I could feel the support of all of you throughout, and that it definitely got me (us) through the hard times. I hesitated about having the party on May 10th. Yes, it was the second year milestone, but I had not had my two-year checkup at Hopkins yet. I had not had all the tests and biopsy results that would tell me officially how I was doing. I felt like I might jinx the outcome if I had a celebration too soon before I knew. But in the end I decided to go ahead with it. And I’m glad that I did. No matter what the test results might show, I experienced the gift of two more years. Thank God for that.

On May 20th I had a battery of tests, many vials of blood taken and the dreaded bone marrow biopsy. I also was given six more immunizations. Five booster shots for the usual childhood diseases and one new one, the MMR vaccine (measles, mumps, rubella), the live virus. Before two years, I could not be given any vaccine with a live virus, because my immune system couldn’t have handled it. My immune system is only two years old. Three shots in each arm, a biopsy taken with a gigantic needle in my pelvis (ugh), and of course, the many vials of blood. It is a week later and my arms are still sore. The other part of my anatomy is feeling much better. If this is too much information, I apologize. It’s amazing, but all this poking, prodding and sticking has become routine for me. Not pleasant, but very necessary. The blood test results are two pages long. They test EVERYTHING.

I got the biopsy result today via e-mail from my doctor at Hopkins. His e-mail was very short, but oh so sweet. He said, NO LEUKEMIA – GREAT! BLOOD COUNTS PERFECT – GREAT! All my best……

I said recently that 2013 had been the best year I have had in a long, long time. I finally felt healthy. And 2014 is turning out to be even better. I am enjoying so much my art classes and my art friends. I am painting with a new sense of excitement. I feel like I have all my energy back again. Before the transplant I had been so fatigued all the time. I can’t wait to wake up each morning to a new day. I take zero medication now. That all ended July of 2013. I still have GVHD (graft vs. host disease) in my eyes. My eyes get irritated, dry, blurry at times. Bright sunlight and wind bother my eyes. I had silicon plugs inserted into my tear ducts and that has helped tremendously with the dry eyes. I bet you all became squeamish reading that. But really it’s nothing. I didn’t feel it when the doctor put them in, and I don’t know they are there. Who knew? Anybody who suffers from severe dry eyes should give them a try. I use Restasis eye drops twice a day every day, and that has helped a lot also. This condition will never go away, but it can be managed. Sometimes when I’m having a flareup of eye GVHD, it makes it hard to read or paint or watch TV. I have to avoid the sun like the plague, and I have a few other restrictions, but mostly everything is back to normal. And as for my hair? Well, it’s never recovered, and probably won’t. All in all, a small price to pay for a second chance at life. I see my doctor again in September, and then it will probably be six months between visits.

It’s nice to be “ordinary” again. Planting flowers. Having our house painted inside. Watching a ball game. Having a party. ACTUALLY MAKING PLANS! Each time I walk into that giant waiting room at Hopkins for a checkup, I notice all the people who are just starting this transplant journey. The ones who look so frightened, the ones who look so frail and feel so sick. I just want to give them all hugs. You recognize them right away – bald heads, masks on, a blank stare, toting around their large bags of medications and needed supplies. Just trying to get through it. Their caregiver by their side. Trying like hell to get to THEIR milestones. Larry and I look at each other and think, that was us in 2012. And look at us now. So blessed.

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Revelations – Not Resolutions – Day Plus 605

Wrote this on New Year’s, just posting it now.

As the year 2013 is coming to a close, I have been reflecting on what an incredible year it has been. I stopped making New Years resolutions a while ago, because I really never kept the ones I made, and somehow the importance of doing that seems so trivial now. I can completely understand wanting to start the new year with sort of a clean slate, and to hopefully have a more productive, full, enriching, happy year ahead. As for me, I look at 2014 the same way I did last year when 2013 was just around the corner — a most amazing gift.

It has now been 605 days – 20 months- since my bone marrow transplant. If you think it is quirky to count each day and keep track of them, all bone marrow transplant survivors and their medical teams do exactly that. So we have those numbers constantly in our heads, keeping track of each new milestone. This year (2013) has been the best year I have had for a long time. I’m still recovering, but I am definitely as close to feeling 100 percent as I can be. My energy level is high and it feels so good to be busy and do the things that I love. This year has been a true blessing.

Without getting too melodramatic about it, when I spent two months in Hopkins in isolation, I had a lot of time to think. When anyone comes face to face with a catastrophic medical illness, the reality of the situation kicks you in the gut pretty fast. When I was not in my drug-induced and chemo-induced red haze, I put a lot of images in my brain to get through it. I prayed every day, of course, but I did other things as well. I took trips, I painted pictures, I had imaginary conversations, I listened to music, I played a movie loop of my life so far — you get the idea. This was done laying flat on my back hooked up to the largest IV pole I had ever seen. I use the term “red haze” because strangely, when I closed my eyes (and my eyes were closed a lot) it appeared so red. Was it all the brand new marrow trying to take up residence in my body? I don’t know. I only experienced that for about three months.

During this time I also made up my mind to revel in each and every day that comes my way. It’s amazing how much in this world is clutter that depletes our bodies and souls of much-needed love, energy, and appreciation of life. The 24-hour news cycle that constantly bombards us with “important” happenings every day, and then relentlessly replays those happenings until we beg for relief. And all the nastiness that erupts from so many venues about almost everything is so disheartening. I have come to believe that of course there are very important issues in this world that need to be discussed and resolved, but those issues will eventually resolve themselves if good and loving people take the lead. And if those nasty, screaming people would just get out of the way.

The crazy things you think of when you are so vulnerable after being told the diagnosis. My doctor was and is amazing. Here is a man who has the reputation of being one of the best, if not THE best, oncologist/hematologist/scientist in the world when it comes to rare blood diseases at Hopkins. As I listened to him and watched him, I was impressed. He had compassion and very kind eyes with a lot of laugh lines, so I knew he must smile a lot. And he is a hugger. Larry and I have received numerous hugs from him. When he looked me straight in the eye and said, “we WILL get you through this”, I completely believed him and trusted him. And I never once thought about what his opinion was of The Affordable Care Act, gun control, immigration reform, what his religion was or if he even had a religion, what political party he liked, etc. All the hot button issues of our world faded away. All the clutter disappeared. It was just me and Larry and Kellie in that room preparing for battle, alongside my doctor and his arsenal of weapons. The biggest weapon of all was always the prayers from so many people, but the doctor’s expertise and tools at his disposal were very much needed also.

I don’t sweat the small stuff or the big stuff anymore. I feel very much at peace. My family would say that I still get “hyper” about some things, but that is just my personality. I am truly peaceful. I am in contact with two other women, both BMT survivors, pretty regularly. One just passed the two year mark and the other passed the three year mark. It’s good to be on this journey with others who have come before you. They have given me so much support and good information. I am trying in some small way to “pass it forward” to help other people in any way that I can. Amazingly, opportunities have arisen this past year to do just that. People have contacted me about their own challenges with BMT or challenges their loved ones are facing after being diagnosed with leukemia.

So, no New Years resolutions for me. Just reflections on the wonderful life I have, my loving family and extended family, all my friends in art class and elsewhere, and what I would like to experience in 2014. Take a look around. The smallest thing may inspire you. God is truly great.



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Day Plus 450-A message from Kathy

It’s been a while since I updated this blog, and for anyone who occasionally checks, I’m doing very well.  It’s hard to believe that it’s been sixteen months since the bone marrow transplant.  A lot of water under the bridge, but still paddling the boat upstream.  My last checkup was on August 1, 2013, and everything is progressing pretty smoothly.  All the labs look very good.  The blood counts are almost perfect.  The red cells are finally coming up into the normal level, so the constant fatigue and perpetual state of anemia seems to be abating.  This problem had a lot to do with still being on the antibiotic Dapsone for many, many months.  It suppresses red blood cells.  I didn’t know this until recently, when I finally researched the drug myself.  I have constantly worried and fretted about the low red cells for a year, but all the medical people kept me in the dark about the side effects of this drug, telling me not to worry, and that this low red cell count could possibly be my “new normal”.  All the post-transplant drugs are very necessary for sure for a period of time, but they all do have serious side effects.  I purposely didn’t want to know any of these side effects while I was recovering or I probably would have refused to take any of these medications.  By the way, I HATE the term “new normal” and will kindly ask anyone who uses it to please stop.  Somehow this term has found its way into the way medical professionals relate to patients’ concerns.  It seems to be a way to blow off patients concerns and questions, and sometimes it feels demeaning.  Maybe it’s just me.  I’ll get off my soap box now.
At my last checkup, I was told I could discontinue the last two medications I was taking:  Dapsone (antibacterial) and Valcyclovir (to keep the shingles virus at bay).  The doctor didn’t know it at the time, but I had already discontinued the Dapsone on my own as sort of an experiment to see whether this was the cause of the low red cells.  And it was.  I had also had an ongoing fight with trying to gain weight, feel at all hungry and to taste the food I was eating.  I have basically been a little anorexic for months.  Literally having to remind myself to eat, because I needed the nutrition.  And nothing tasted as it should.  Well, it turns out that these last two drugs had everything to do with that problem also.  After being free of those drugs for a month now, my food battle is over.  Hooray!  I feel hungry, I eat and enjoy it, and I can taste food correctly again.  No one can completely understand unless this has happened to them.  It was absolute torture for many months.  People would joke that they wish they had my problem, that is, that they wouldn’t feel hungry so they could lose weight.  But I wouldn’t wish that on my worst enemy.  It was very depressing, not to be able to enjoy myself with others at a restaurant or a party or whatever.  Sometimes even looking at certain foods made me nauseous.  Our whole culture revolves around getting together, having fun, talking and enjoying food.  I am now free of all medications for the first time in two years.  I still have a cabinet full of “just in case” medications for anything that may arise.  Creams, ointments, eye drops, Prednisone, mouth rinses, etc.  Anyone who has been through a transplant knows that there is a never-ending tug of war between GVHD and a period of calm.  My GVHD seems to involve mostly my skin with occasional breakouts of what looks like acne on my face.  And periods of intense itching other places, but no breakouts.  I did get tear duct plugs in my eyes a few weeks ago, and that has helped tremendously with the dry eyes.  My dry mouth has all but disappeared.  I think that was a result of those last two medications also.  I pray that this is all that will come my way.
My hair has completely come back — no bald spots — but it is thinner and very fine.  Not my normal hair at all.  And of course it is gray.  I expected the gray color, but not the completely different texture and thinness.  I would like to stop wearing wigs, but I need to consult with my hairdresser to figure out what to do about it.  I have an appointment next week, so we’ll see.  I have heard from some people it can take a couple of years for hair to come in “normal” again.  Whatever normal is these days.  This is another milestone for me.  My last trip to the hairdresser was in April of 2012, for a shorter haircut, because I knew I would be bald soon after.
I feel physically very well these days.  I have attended two semesters of art classes so far this year, and in a couple of weeks I will start the Fall semester.  I jump in my car and go shopping or to a restaurant or to a movie now, without thinking too much about anything.  There was a time when just driving to a nearby store would fill me with nervousness — I’m not sure why.  I’m naturally a worry wart, but leaving the cocoon of constant monitoring and care by the hospital and medical personnel, and basically being let loose to fend for myself was scary to me.  I might have been more vigilant about germs and other things than some people, bordering on being paranoid for a while, but it was the way I had to deal with the world so I could get through it.  I finally had the last booster shots for childhood immunizations at my last checkup.   I’ll get a flu shot soon, and I guess more immunizations will come next year.
Just mentioning “next year” fills me with wonder.  I have been truly blessed in my recovery as it is progressing.  The physical part is pretty stable and I am very grateful for that.  The nagging thoughts in the back of my brain are still there about relapse, because I still have mixed chimerism.  Eighty percent donor, and twenty percent me, give or take five percentage points.  My doctor ASSURES me that I shouldn’t worry about it, that people are living full and healthy lives for many years with mixed chimerism.  But I’m sure that anyone who has gone through a cancer diagnosis and recovery, no matter what kind of cancer, feels this dread at times.  Every ache, pain, hot flash, dizzy spell, rash, bruise —– what is it??  Is it back??  And that brings me to the mental aspect of recovery.  And knowing me, I will quiz him about this again at my next visit Sept. 26.
Mentally it’s very hard (at least it has been for me) to transition from a constantly monitored patient with a very serious illness and a transplant survivor, to a person who is back living a normal life again.  However you define normal.  Going through this whole process from spleen removal in 2011, to CMML diagnosis, to chemotherapy for nine months, to bone marrow transplant, to now recovery, is in itself challenging.  When I started the transplant process in April 2012, I made up my mind that the only way I could get through it was to focus like a laser beam on almost nothing and no one but myself.  It sounds so selfish to me now, because I really was worried about my family and felt so bad for them to see me like that.  But I had to dig so very, very deep inside of me with prayer, faith, grit and determination to succeed, that it was necessary (I felt) to block a lot of things out.  Other people have their own stories of how they got through it, but that was the way I handled it.  And consequently, that has probably made it a little harder for me to now let go of all that intensity and to just chill out and enjoy life again.  Getting back in the loop, the swing of things again.  It’s hard to explain it to loved ones and other people in general, but I am trying.  My goal now is to really work on decompressing.  I feel like I have been in a way on another planet for a long time, and returned a few months ago.  I have to get the lay of the land again.  Life went on without me for a great while, and I’m re-learning how to fit in again.
So, as I said in the beginning, I can’t believe it’s been 450 days since transplant.  And for everyone out there who is struggling now with going through this process, and your recovery is a series of ups and very bad downs, just keep at it.  It’s the hardest thing you have every done.  It will take time, but it will get better.  Just know that I have been where you are now.  All the aches, pains, rashes, diarrhea, G.I. problems, dry mouth, dry eyes, itchy skin, dizzy spells, weakness, insomnia, vomiting, appetite problems, nerve pain, anxiety, depression, the feeling that you could throw something through a window, but you were too weak, and a host of other things — it will for the most part be in your rear view mirror.  It’s not all roses, but the thorns are few and far between.  I will continue to pray for myself and for everyone out there who is facing this, that all will be well.  World class hospital, world class doctors, world class medicines are all important, and I am so grateful that I have access to all of that.  But what is really important is a world class attitude from each and every cancer patient that they WILL prevail and become survivors who help others on this same path along the way.  So many of those survivors have certainly helped me.  No one knows for certain about anything in life except for this — THE INCREDIBLE HUMAN SPIRIT.
I’ll update again after my next checkup at the end of September.  Take care of yourselves.
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T + well over a year

I haven’t driven to Johns Hopkins once this summer!  Mom has, but just for her one year post-transplant checkup, which told us she is doing really great.

I owe you Mom’s own words from last month– so here they are:

Hi Everyone,

It’s been a while since I’ve updated, and that’s really a good thing.
I have been feeling great the past six months.  It is now 402 days
since the transplant — over a year!  This time last year (2012) I
wasn’t even out of the hospital yet and feeling physically pretty bad.
I feel so grateful and truly blessed.  The love, support and prayers
from all of you have gotten me (us) through this.  And every day I
thank God for Kellie.  I still have some issues with GVHD which causes
dry eyes, severe dry mouth and occasional breakout rashes.  All of that
is expected and treatable.  Eating is really a challenge, because my
taste buds don’t work well, and I seem to have lost the ability to feel
hungry.  I literally have to remind myself to eat, because I need the
nutrition.  I feel plenty thirsty all the time, but not hungry.  I am
constantly popping sour lemon drops in my mouth, because they taste
good and keep the saliva flowing.  I think I have become an addict.
All and all, life is GOOD.

A couple weeks ago I had my one-year checkup at Hopkins.  A lot of
blood was drawn (15 vials), bone marrow biopsy (ouch), and the first
five childhood immunization shots were given.  The nurse said I would
feel “punky” for a couple days after the shots.  I don’t know what
punky means, but I definitely felt out of sorts and sore for a couple
days.  I feel sorry for little babies who get all those shots at once.
Next month I will get more immunizations.  Even though I had a lot of
those childhood diseases, I have to be immunized again.  And these days
there are more shots than ever before.

The day of the checkup, Larry and I went up to the fifth floor to the
transplant unit that had been my home for two months.  That was our
first time back.  As we slowly walked the hallway and discreetly looked
into the patients’ rooms, we marveled at how far I have come.
Everything looked oddly smaller than I remember.  When I used to do my
laps in that circular hallway, lugging my giant IV pole, it seemed
wider and longer.  We walked quietly and said a prayer for all the
patients lying in their beds, just starting on their journey.  We saw
familiar faces and hugs were given out.  The staff recognized Larry
before they recognized me.  I looked very different last year, as you
can imagine.  They were grateful we came for a visit.  They see
patients at their sickest and don’t always see them later on.  It was
in a way therapeutic for us, and everyone said I looked great.  As we
left the unit I kept thinking, did I really do this??  We saw my doctor
also that day, and he basically gave us a pep talk and told me to keep
up the good work.  He smiled a lot and gave us hugs.  Everyone at
Hopkins has been super.

It was a long tense ten days waiting for the results of all those
tests.  Yesterday my doctor at Hopkins e-mailed the results.  After all
that waiting I was suddenly afraid to look myself, so Larry read the
e-mail to me.  The first sentence – in capital letters was – NO
LEUKEMIA.  It took us a few minutes to gather our composure enough to
read the rest.  We were so relieved.  Everything looks very stable.  I
am still a little anemic, meaning the red blood cells are on the low
side.  The doctor feels that this will eventually work itself out.  And
I have iron overload, which is pretty much a common occurrence in
transplant patients because of having to receive so many blood
transfusions over a period of several weeks at the beginning.  They
will start to correct this at the two-year mark by either medication or
literally having me “give blood” on a regular basis for a while.  That
blood will have to be thrown away and not given to anyone else.
Fatigue is still a problem at times for me because of the anemia, but
my energy level has increased a lot.  I am doing just about anything I
want, but I pace myself.  I have no restrictions now, except common
sense ones like:  STAY OUT OF THE SUN; don’t be around sick people;
wash your hands and use hand sanitizer a lot; no salad bars or buffets,
etc.  I only take two pills a day now, a wide spectrum antibiotic and a
pill to keep me from getting shingles.  The doctor said I’ll be on them
at least a couple more years.  A couple more years?  It’s nice to be
talking about a couple more years — and beyond.  My hair has
completely grown back — gray of course, and thick — but it’s not MY
hair.  It’s chemo fried, course feeling and sticks straight up.  I
can’t do anything with it.  I’ve used all kinds of products to try and
tame it, but to no avail.  I expected the gray hair, but not THIS.
Kellie says I should just go with the flow, use a lot of gel and create
a “spiked” look.  I’m sorry, but that’s just not me or at least the me
I’ve come to know all these years.  So, while I try to come to terms
with this, I still wear a wig and try to figure out where to go from
here.  I think a trip to my hair stylist is in order soon.  It’s been a
long time.

I’ve always said that this whole process has been difficult physically.
But I think mentally it’s just as hard, maybe harder.  To keep your
mind focused constantly like a laser beam on getting past all the real
hard stuff, and to concentrate on getting well every minute of every
day is daunting.  And when things get too tough mentally, my family is
there to help chase those dark thoughts and fears away.  Meanwhile,
summer art classes are underway again, and I’ve got two paintings going
at the same time.  Remember, enjoy life and don’t sweat the small
stuff.  Most things in life are small stuff.  Take personal time for
yourselves doing what you love.  Everyone has heard those old sayings
over and over, but they are all so true.  And the truest one of all —
when you’ve got your health, you’ve got everything.

Kathy, Mom, Aunt Kathy, Grammy


Posted in July 2013 | Tagged , , , , | 2 Comments

T+307: 100% Donor!

A message from Kathy:

Hi Everyone,

It’s been a while since I updated, so here goes. The past three months have been the best months for me since the transplant. Can you believe it has been ten months?? I have felt very physically well and much stronger. There still have been some challenges, but all in all life is very good. The most challenging thing has been the severe dry mouth symptoms and tasting food. Some foods taste exactly as they should, some taste weird, and some have no taste at all to me. The doctor says this will all get better over time, how much time, we don’t know.

I have started my studio art classes again twice a week, and I feel so blessed that I can do it. In December I wondered if I should even sign up. It was so wonderful to see all my art buddies again, they have been so supportive through all of this. I have even completed my first oil painting, a very small one, but I completed it. I can’t wait to complete more.

I only go to Hopkins once a month now for blood tests, so today was that day. And what a day it was! Remember a few months ago when I said that I was a chimera, meaning Kellie’s bone marrow had not taken over mine 100 percent? And the doctor said I may always have that split bone marrow? At the time it was 70 percent Kellie and 30 percent me. I was disappointed, but was resigned to the fact that this was how it was going to be from now on. Well —– I had another test done for chimerism last month and I got the results today. All my blood counts look great, and the best news of all is that my bone marrow is now 100 percent donor. Somehow in the past few weeks Kellie’s marrow has finally taken over. What wonderful news for us. Our prayers have been truly answered regarding this. I felt like I had won the lottery. What a blessing. I got a copy of the test results and it said “no evidence of patient DNA”.

Mom and Me 2012

Here is a weird question. If I am now totally Kellie’s DNA in my bone marrow, does that mean that I am now biologically related to Larry, since he is her father and she has half
his DNA???? I also now have her blood type, O Positive – and no longer my own which was A Positive. It kind of hurts my head to think about this stuff sometimes.

Now, since it is almost coming up on a year since the transplant, I will have to get another bone marrow biopsy the first week in May. That will tell us many things, but we are praying it says “no evidence of disease”. At that time I will also have to start getting my
childhood immunizations again, as well as a lot of other shots too. This will take several weeks. In the scheme of things I’m really only ten months old, and need to get all the vaccines again. We don’t quite understand this, because obviously Kellie was immunized against everything and I now have her marrow, but it’s doctor’s orders. I am
only taking two pills a day now, an antibiotic and an antiviral. I’ll be on them for probably another year. A lot less than the 40 pills a day I was taking last summer.

Anyway, Spring is really coming soon. Buds are on the trees and my tulips are coming up. Another beautiful season. I feel so grateful to everyone for all the prayers. You have all given me and my family so much support, and it has given me the strength to get through all this. Thank you. This time last year I was trying to prepare physically and mentally to go into the hospital. I marvel at how far I’ve come, but the journey continues. One day at a time, one step at a time, one hour at a time, taking nothing for granted, and enjoying every single day. Slowly but surely getting back onto the dance floor of life.

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T+175: Some Bumps in the Road–a Message from Kathy

Hi Everybody,

Some of you may know that I have had a rough few weeks, a lot of good
days but more increasingly bad days.  It involved a lot of eating,
tasting and GI issues, without going into all the gory details.  This
past Monday I broke out all over with a serious case of hives, itching
and painful hives.  I went to Hopkins on Tuesday and they took a skin
biopsy and gave me a prescription ointment and a pill supposed to be
stronger than Benadryl.  Nothing helped.  Thursday I started puking.
During one puking session I fainted and fell to the floor like a rock.
I managed to bruise both knees and break the middle toe on my left
foot.  Larry heard the noise, asking where are you?  I weakly replied,
on the floor in the kitchen.  After much panic setting in, I was
finally able to let Larry help me to the couch.  I now hobble around
the house with a taped up couple of toes and one crutch.

To make a very long, chaotic story short, we went back to Hopkins today
(Friday) where they checked over.  The skin biopsy showed that I was
having an allergic reaction to “something”, most likely an antibiotic I
had been taking for six months.  This was causing a lot of problems.
They said a person can develop an allergy to something at any time,
even after long-term use.  They took me off of that pill and changed
the antibiotic.  Also, they determined I have chronic Graft vs. Host
disease.  A little of that is a good thing, believe it or not, because
it shows that my new immune system (which came from Kellie’s marrow) is
fighting foreign invaders (my old marrow).   I am 70 percent Kellie and
30 percent me, which means it’s not 100 percent Kellie yet.  And if it
never gets to 100 percent Kellie, that’s okay as long as my counts
remain stable.  I can live with that scenario, according to my doctor.
But GVHD can cause a laundry list of physical annoyances.  They just
don’t want it to become severe.  So there is a fine line to keeping it
under control and not giving me too much medicine so my immune system
is further weakened.

The main line treatment is low-dose steroids, in my case Prednisone,
for as limited time as possible.  In my case, maybe three months.
There are a lot of other nuances to this which I won’t go into, but we
are praying that this change in meds will do the trick.  Like I’ve said
before, it’s a marathon, not a sprint.    Thank you all for your
prayers and support.  I AM hanging in there, even if sometimes it’s
only by my fingernails.  I hate to feel sick (who does?) but I am
particularly grumpy when it happens to me.  Larry is a saint.
Sometimes he can only watch what’s happening, not being able to do
anything about it.  I, on the other hand, start yelling that I want
this situation fixed and I want it fixed NOW!   I have quite a bit of
my father in me, the spit and polish military man — and the extreme
stubborn attitude of my mother.  It has served me well through all of
this.  And Kellie says, Mom, you’ve got my good marrow now, and it’s
STRONG.  And prayers have certainly served me well too.  I’ll be in
touch again soon.

Love to all,


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Day T+96: Just Sitting Here Watching the Wheels Go Round and Round

I’ve heard from a lot of people lately asking for an update on Mom, and I apologize for letting some time go by.  Let me assure everyone, it’s all good.

Since day T+66 we’ve all been learning to wake up and not feel that clutch of fear around our heart, and we’ve shed the dark cloud we’ve been living under.  For my part, I have headed to the beach, the pool, the playground and any point of blessed normalcy I can get too.  Mom has been home, regaining her strength, and she’s happy to be there.

She had a brief weekend in the hospital  last week after experiencing severe abdominal pain.  Doctors concluded that her digestive system is still really weakened from the chemo, and it might have been as simple as having fresh corn on the cob.  She was unhappy to be there, but it was, in the scheme of things, pretty quick.  While in the hospital they did a scan of her heart, because it has some fluid around it.  Yesterday at her monthly appointment with Dr. Smith, he said the scan looked good: function is right on, and the fluid pocket is small (and a result of the chemo).  Her counts are amazing.  She has over 7000 white cells, she’s making platelets on her own, her neutrophils are in the normal range– she only sometimes needs red blood cells (those are the last things the new marrow will manufacture).  She’s been weaned down to checking in at Hopkins every 8 days.  Yesterday Dr. Smith told her it was OK to eat a restaurant– in off hours– I think she’ll try that soon.

Saturday she resumed her old job as Michael’s barber.  He got one haircut with Daddy early in the summer, but since then he’s been saving his head for Grammy.  When he left he said, “It’s really great to have you back Grammy!”

So, our music of the moment?  Some John Lennon, because I for one have experienced a real and personal transformation.  I’ve seen a bigger picture this year and I’m no longer going to be stressed by the silly little things we let ourselves get caught up in–in any part of my life.  So there.

“People say I’m Crazy doing what I’m doing
Well they give me all kinds of warnings to save me from ruin
When I say that I’m o.k. they look at me kind of strange
Surely you’re not happy now you no longer play the game

People say I’m lazy dreaming my life away
Well they give me all kinds of advice designed to enlighten me
When I tell them that I’m doing fine watching shadows on the wall
Don’t you miss the big time boy you’re no longer on the ball?

I’m just sitting here watching the wheels go round and round
I really love to watch them roll
No longer riding on the merry-go-round
I just had to let it go

People asking questions lost in confusion
Well I tell them there’s no problem, only solutions
Well they shake their heads and look at me as if I’ve lost my mind
I tell them there’s no hurry…
I’m just sitting here doing time

I’m just sitting here watching the wheels go round and round
I really love to watch them roll
No longer riding on the merry-go-round
I just had to let it go”


Posted in August 2012 | Leave a comment

T+66: Rejoice Evermore!

One year ago Mom, Dad and I sat down in Dr. Smith’s office and heard the most frightening news any family can hear.  The world was suddenly a grim and unfamiliar place and we began to live in a state of constant stress, even as Mom began her fight against CMML.

Today is 66 days past the bone marrow transplant, and once more Mom was in Dr. Smith’s office…but his demeanor was much different than last year.  Today, he was very, very happy.    The latest bone marrow biopsy shows that my marrow now makes up 75% of Mom’s marrow.

I am so proud of my bone marrow–I thought it had what it takes!

Mom is doing really well.  She was released from IPOP and has been home for a week.  She still has to go to Hopkins twice a week to be checked.   Her white cells are bouncing around in the 2000-3000 something range, her neutrophils are in the NORMAL range! and she hasn’t needed a transfusion of platelets in a week.  She is starting to eat well, she is resting, and she is doing what Dr. Smith has charged her with now– getting her strength back.   She still needs to be very careful of infection.  She has to avoid crowds– but he gave her permission to eat what she wants– that’s huge, right?  Especially for someone who existed on Ensure and tomato soup for 2 months.  My son is a little nervous around her– he misses her hair and her smile (she has had to wear the mask around him) and he’s asked me when “the old Grammy is coming back”.  She’s here!  We tell him– but he’s skeptical.  I think he’ll see a greater change in the next month or so.  And someday, maybe he’ll read these entries and he’ll understand everything he’s been through.

As Dr. Smith put it today, Mom has gotten over the 1st big hurdle.  She is cancer free, and she is accepting my marrow.  As time goes on she still has to be wary of graft v. host disease, and of infection.  But he started a sentence with “In 10 years…” and I have no idea how that ends because my mind is frozen on how much better that sounds than, “would you like to make it to Christmas 2012?”

We have been given such a gift.  I can scarcely wrap my mind and heart around it.  I am thankful for the brilliant doctors at Hopkins.  I am grateful for my Dad’s perfect care of my Mom; for my Mom’s incredible strength of will through the darkest days of this process’; my husband’s unwavering care of me as I navigated the mental and physical challenges of this crazy time.  I am sending out my love and thanks to all our friends and family for their amazing support. How many hundreds of prayers have been said for our family?

On this road, we never traveled alone.

I am not sure how to come down off the constant vigilance.  I think it will take a while to relax, to stop waiting for the next bad thing– but I think that is normal.   In the meantime, it’s an Alfred Tennyson type of night– and maybe in whatever personal journey you are taking, these words will inspire you as they always have me and my Mom:

From “Ulysses”, which first appeared in Morte D’Arthur, and Other Idyls

“Come, my friends,
‘Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew

Tho’ much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.



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