My Journey and Transformation

Today was my regularly scheduled monthly appointment.  According to my doctor, everything seems to look fine.  He said the blood work looks good and everything else appears to be good too. 

Next month will be two years since my transplant.  Normally, at this milestone, standard tests and procedures need to be completed.  The biggest one is the bone marrow biopsy which will be done on November 13th.  The anxiety still hasn't dissipated, but its not ruling my life either.  One of the statistics that was given to us regarding being "cured" after transplant was 5 years.  But, I think that is the same for a lot of cancers.  Statisticians, Doctors, the medical/scientific world, state that if you remain in remission for 5 years, a person is considered "cured".  They further state, if someone has undergone a stem-cell transplant, and if that person achieves remission after two years, their chances of relapse are significantly small.  So there is a lot of HOPE.  I've made it this far and I'm still "hoping" that it will continue and has me reflecting on my journey these past three years.

It's been quite a journey.  I really don't even know where to begin.  Some may think that it begins the day of my diagnosis, but it really doesn't.  My journey began my first day I was brought into this world and took my first breath.  All of us have our "own life's journey".  And each journey shapes us into the person we are in the present.  All of us experience lessons in life and its up to us whether we learn from them or continue to ignore them.  So, as I sit here, I'm reflecting on my life lessons that I chose to learn from and others I, unknowingly, ignored. 

In one of my previous blogs, "Changes", I referred to three pictures, before cancer, in remission, and after transplant.  A friend of mine commented on those pictures stating that in the first two it appears that I have a look in my eyes that's inquisitive, like I'm searching for something and wondering what's next.  I looked back at the pictures, and think she maybe right, it really does look that way.  In my third picture, it looks as though, I'm happy and content, that I'm no longer searching.  And, I realized she may have really hit the nail on the head, because that's how I feel.  I really don't feel like I'm searching for anything.  I'm embracing life and the things that have been offered.  I'm less focused on what's next and how to make things better, in whatever thing I think needs fixing.  I always had the tendency to want to make things better, even if other's thought it didn't need to be.  I'm learning to live second by second, hour by hour, and day by day.  I'm enjoying the here and now!!!  It's unfortunate that it had to take cancer, relapse, and transplant for me to figure out what is best for me, but it's really okay.  If I hadn't been through this, I'm not sure where I would be, especially, on the inside.

Cancer doesn't define a person, but I am defined by what cancer has opened my eyes to, if that makes any sense. I definitely can say that I love myself.  I love who I am as a wife, mother, daughter, sister, aunt, cousin, and friend.  Maybe some people would say that they wish they never had to go through cancer, but I, honestly can't say that.  Cancer is a part of my life's journey and it has made me look at life differently.  It's made me look at what things I do need to take seriously and other things that really are not so important. Sure, there are things that still gets me riled up, and I bitch and vent to those who are closest to me and know me best, but after the venting, I'm done.    I can move on because what will be, will be, and I have no control of those things outside of me. 

I'm looking forward to life after cancer/transplant.  I'm looking forward to embracing what is next for me, my husband, my children, my friends and family.  There will be ups and downs, and that's okay, as long as I stay true to myself and embrace my life's journey.  Which will lead me to my next blog.  That blog may not be directly discuss the effects of cancer or transplant but a reflection of how cancer, relapse and transplant are affecting the decisions that I am making now and how it has molded me into the person I am today. 

I just wanted to thank you for reading my blogs.  There will be many more to come.  My blogs come from a deep emotional reaction to something that has or is occurring in my life.  I plan on moving forward, but in that journey, something from my experience with cancer and transplant, may trigger something that I need to discuss while I was suffering and trying to live through that dreaded disease.

Until then...Happy Reading!!!

Image source:
http://enerqihealth.com/wp-content/uploads/2012/01/Journey-of-a-Thousand-Miles-First-Steps-n-Courage-to-Change.jpg

Father of bone marrow transplant E. Donnall Thomas dies at 92

Thank You Mr. Thomas, for allowing me (and many others) another chance at life and survival. 
God Bless and Rest in Peace!!!

E. Donnall Thomas, a physician who pioneered the use of bone marrow transplants in leukemia patients and later won the 1990 Nobel Prize in medicine, has died in Seattle at age 92.
The Fred Hutchinson Cancer Research Center announced the death Saturday. A spokesman said the cause was heart disease.

"Imagine coming up with an idea, making it a reality and touching that many lives."

- Dr. Fred Appelbaum, Thomas' friend and the director of the center's Clinical Research Division.

Thomas' work is among the greatest success stories in the treatment of cancer. Bone marrow transplantation and its sister therapy, blood stem cell transplantation, have improved the survival rates for some blood cancers to upward of 90 percent from almost zero.

This year, about 60,000 transplants will be performed worldwide, according to the Hutchinson Center.

"Imagine coming up with an idea, making it a reality and touching that many lives," said Dr. Fred Appelbaum, Thomas' friend and the director of the center's Clinical Research Division.

Thomas took after his father and became a doctor after getting his medical degree from Harvard. In 1956, he performed the first human bone marrow transplant.

Thomas, along with a small team of fellow researchers, including his wife Dottie, pursued transplantations throughout the 1960s and 1970s despite skepticism from the medical establishment.
They sought to cure blood cancers by destroying a patient's diseased bone marrow with near-lethal doses of radiation and chemotherapy and then rescuing the patient by transplanting healthy marrow. The aim was to establish a functioning and cancer-free blood and immune system.

The procedure would go on to become the standard treatment for many sufferers of leukemia and lymphoma.

"He was brilliant, he was incredibly generous and he was quick to deflect praise from himself to the individuals around him," Appelbaum said.

"At the same time, while he was quiet and modest, he was stubborn," he added. "He believed in what he was doing and he was going to make it happen. It's hard to imagine today how hard it was to make this reality because it was against the prevailing medical wisdom."

Thomas joined the University of Washington faculty in 1963. In 1974, he became the first director of medical oncology at the Hutchinson Center. It is now one of the world's top cancer treatment and research institutions.

Thomas also edited the first two editions of the bone marrow transplantations reference book, "Hematopoietic Cell Transplantation," which would become a bible for the field.

"To the world, Don Thomas will forever be known as the father of bone marrow transplantation, but to his colleagues at Fred Hutch he will be remembered as a friend, colleague, mentor and pioneer," Larry Corey, president of the research center, said in a statement.

Thomas is survived by his wife, two sons and a daughter.

Article obtained from: Foxnews.com http://www.foxnews.com/health/2012/10/22/father-bone-marrow-transplant-dies-at-2/?cmpid=cmty_other_Father_of_bone_marrow_transplant_E._Donnall_Thomas_dies_at_92

Really?!?!

I came across this pic and link regarding preparation for stem-cell transplant which is really great ...although the picture not so much.  I did not feel nor look like the pic regarding my stem-cell transplant.  Maybe it's just me, but I really didn't feel like celebrating the way some people do.  Its like experiencing a death and birth at the same time, it's a mix of different emotions!!!

>>To READ, click on Link below:
https://www.facebook.com/notes/bone-marrow-and-stem-cell-transplant-survivors-club/preparing-for-a-stem-cell-transplant-tips-from-a-stem-cell-transplant-survivor/130113697026520

Image source:
 http://marrowdrives.org/illustrations/stem_cell_transplant_illustration/hickman_catheter_stem_cell_transplant_514w.gif

Ok...Shit Just Got "Real"!!!

Next week (Tuesday, October 23rd)  is my standard follow up appointment in Pittsburgh.

This is the moment each month that it all boils down to...the waiting!!! 

It begins even before I see the doctor.  It begins the week before, the days before that dreaded appointment.  It begins, all over again, that morning, when I'm getting up and getting ready.  It's while I'm in the car, driving the same roads that have been driven a hundred times before, with either the same or different outcome.  It's the same as we pull up to the clinic, walk through the doors and board the elevator.  It's there when I'm signing in and waiting for my folder to carry to Section H.  It's there as I'm looking around the waiting room, looking at all the other patients and families.  I'm wondering, "are they thinking the same things as me...what things have we experienced that are similar and what things have we experienced are different...are they just as scared as me at this moment...are they wondering whether their news will be welcoming or are they wondering if their life is going to be thrown into complete chaos, again???  I can't even begin to describe all the thoughts that race through my mind.  I think ..."this should be simple, this should be easy...I'm in remission...I was doing well last month...I should be doing well this month".  And maybe it is that way for some people, but for me, it's one big mountain of anxiousness because I've allowed myself that comfort zone.  I've allowed myself to think "it's" gone.  I've allowed myself that joy of living life...and to have it all taken away from in one appointment, saying "you've relapsed". 

So here, I am now, after transplant thinking, "yes, I'm doing well...I'm beginning to embrace life and coming to terms with the many changes that have taken place".  But, there is another part of me, in the back of my mind thinking..."you were here before and look what happened".  I am trying very hard not to dwell on it but it's there hovering over me like a gray storm cloud waiting for the storm's torrential down pour to come or waiting for the sun to push it away, opening the skies to yet another month or two, of living life.

So my name is called to have my vitals checked and to have my blood drawn.  I sit there and think..."is this the day my blood and my body betray me...or is this a day I can go home without all of this burden on my shoulders".  I exit the room and wait, yet again, to be called to see the doctor.  I try to keep myself busy by messing around on my phone or reading on my Kindle.  Then my name is called, I get up with my husband or mom and dad, and walk to the room, where we have to sit, yet again, and wait.

The doctor walks in and I'm sitting questioning whether I should look at him...should I look at his face because I will know the results...I will know it's good news or bad news.  Obviously, my last appointment was good, so what will it be this coming Tuesday???

After the doctor discloses that everything looks good and all the numbers are within the normal range, the others in the room let out the air, that we all have been holding in.  Although, mine is still being somewhat held in.  As I sit there, I question why can't I just embrace this moment right now.  This is all good news.  I should be hugging and smiling and rejoicing with the rest of them.  But, I just can't seem to be there "in the moment".  Is this typical for someone who has experienced a relapse?  I know with my initial diagnosis, there was that fear of relapse, but it wasn't as significant as it is now.  And, I'm not saying that I obsess over it.  These thoughts usually occur a week or two before my appointment and the day of I'm a complete mess!!!  I really want to get passed this, its just I don't want to be blindsided like I was before.  Like I said in an earlier post, my relapse was more of a shock than my initial diagnosis.  It was harder to come to terms with and accept.  So, if it can happen once or twice, it can happen again.  But, even though I don't allow myself to dwell on it, doesn't mean that fear isn't there in the back of my mind.

So, here I am going through the motions of life as the dreaded appointment lurks just around the corner.  It will either be a great day or something I just really do not even want to face.  I just need to keep telling myself..."it's out of my control...what will be, will be...and I'm one stubborn girl, and Iwill just keep fighting"!!!

Image source: http://www.tiedribbon.com/search/label/getting%20real

What Does That Mean...GVHD???

GVHD...what is that???

When speaking about my bone marrow stem-cell transplant, I usually get this reaction when I mention GVHD (Graft vs. Host Disease).  Basically, its my body fighting the donor cells and it is exhibited through a variety of symptoms.

GVHD is very common in transplant patients.  I have definitely dealt with a lot of it!!!  My GVHD seems to go in phases and I'm hoping some of those outbreaks do not return any time soon or really ever!!!  I can handle some of it but not the more extreme cases I had had.

Some forms of GVHD I have experienced has been nausea/vomiting, skin rashes (or burns), gastrointestinal issues, asthma/lung issues, and dry eye.  I really hope that's all I know and the symptoms I experienced early on post-transplant, I'm hoping and praying I do not have to experience again.

Most of the time, medication, is used to address these symptoms and the majority of the medication is steroid related.  So, not only have I had to suffer with the GVH symptoms themselves, but the side effects to the medications, which has included, weight loss/gain, the typical steroid "moon" face, eating or lack of.  It's been a total roller coaster of emotions and side effects.

Every transplant patient I'm sure has experienced some form of GVHD.  Noone experiences the same thing and each experience can be brief or long-term.  There really is no way of knowing how long I will have to deal with these side-effects.  It could be a few months, years and even a life-time.  And knowing that it may never end, can be very frustrating.  I guess it's just a matter of learning to live with and knowing that there is a possiblity of it just ending or lasting forever.  And the quicker, someone can come to terms with it, maybe, lasting forever, the sooner of getting your life back.  Because here again, is yet another thing that can't be controlled.  So why worry about something that may or may not go away. 

I think one of the biggest struggles for me has been the "sun" issue.  I really have never been one to lay out and soak up the sun.  I have never been in a tanning bed and, ususally, the times I have ever been to a beach was spent under an umbrella.  I have never tanned well and always seemed to burn.  But, at least, I had a choice of whether I wanted to sit out in the sun for a little bit, whether it be at the beach, a picnic, party, etc.  I still had that choice.   Now, I don't.  I have to seek out the shade wherever I am.  And if there is no shade, I need to create my own, either by using an umbrella, an umbrella tent, or layering up in clothing.  This really has not been very much fun.  Sometimes, it can be quite chilly in the shade, and I crave the warmth of the sun's rays.  But, it's either hiding out in the shade, or risking a GVH flare up.  My doctor had informed me that not only can the sun cause skin issues,like rashes/burns or even melanoma, it can also cause a GVH flare up.  And, that flare up could be any I have experienced before or maybe something new.  I have been told to keep lathering myself in sunscreen, even during the winter.  I need to be aware of how much skin is exposed in the car and I also need to protect my eyes by wearing sunglasses when I'm out, even on cloudy days, because the sun's rays still penetrate through the atomosphere and clouds.

I guess I never really thought how much we are exposed to the sun.  I do need to be more diligent in applying sunscreen.  I just hate that heavy, oily feel.  So if anyone can recommend a skin-sensitive, oil-free sun lotion, please let me know.  I need to protect myself from any future GVH issues and any bouts of possible melanoma.

I have said, in my previous blogs, about all the changes that one faces when dealing with a bone marrow stem-cell transplant, and as you can tell, there are many.  It's all about taking things day by day, because if you're constantly looking at the big picture and trying to figure things out, you're going to make yourself crazy.  And, I have had many people say to me "at least your alive".  Well, I hope now, some of you can see that it's so much more than that.  Yes, I am very thankful to be alive, but it's about coping and processing all of these changes and restrictions.  It's a different life from the one I've had before and this won't be the last of the changes.  We are forever evolving as human beings, internally and externally.  I'm just coping and processing this current journey and I'm hoping that the future won't be so complicated, but if it is, I will get through it, just like I am now!!!

Image source: http://blog.logmycalls.com/Portals/155740/images/what_is_it-call-tracking.jpg

I'm NOT the Energizer Bunny!!!

I'm definitely NOT the Energizer Bunny!!!  I never was nor will I ever be, hopefully I will regain my strength and stamina that I had pre-cancer and transplant.  After close to three years of hospital beds/rooms, tiny apartments, and seclusion in the home, I'm finally able to get out and socialize with the public.  But with that comes a lot of anxiousness.  Anxiousness of germs, and anxiousness of not having the energy to do the things that I used to do.

All that time being secluded and being on medications that totally wiped me out, my body lost a lot of its muscle mass, and its strength. It was very hard to remain motivated and exercise when you were nauseous all the time and just plain tired.  The hospital encouraged patients to walk laps around the inner air-filtered hallway, but that got old quickly.  They tried brightening the hallway with bright pictures and photos of inspiration but those got old too. I did just enough activity to maintain some strength to prevent any significant atrophy from settling in.

Within this past year, I began feeling more strength and thought I would return to Curves Inc. to rebuild the muscles and strength that I lost.  I was very motivated and excited to start this all again.  However, as soon as I began, I realized it was a lot harder than what I thought.  At first, I felt like a failure because I wasn't able to do the amount of reps I used to, and realistically, I knew why, it was just yet another change.  I can be very stubborn when it comes to things like this, so I began to push myself to keep going, knowing that my strength will come back.  So I became motivated in overcoming this obstacle and another obstacle surfaced.  I began noticing my breathing seemed more depleted and I began coughing a lot when I became active.  Whether it was exercising, taking a walk, or climbing the stairs.  It seemed like anytime I became more active, my breathing was affected and I was constantly coughing.  I spoke to my doctor regarding this and it has become an issue of GVHD of the lungs.  GVHD is graft vs. host disease, where my body begins to fight the donor cells.  GVHD can present itself in numerous ways.  I have experienced nausea/vomiting, skin rashes, sensitive skin, gastrointestinal problems, dry eyes, and breathing issues.  It seems the only way to treat most of these issues are with steroids which led to a lot of weight gain and the typical "moon face".  I will discuss GVHD more thoroughly in my next blog.

So, currently, I'm on an inhaler and asthma medicine to address this new issue.  It has helped some but not entirely and can be very discouraging.  I gave myself a break from going back to Curves to give some time for the medicine to kick in.  Well, now its time to get back into it.  I'm not going to go into it with false expectations like the last time.  I'm going to do what I can and not beat myself up on what I can't do.  At least its something and better than doing nothing.

 I have noticed that I can go, go and go for a few days, and then, WHAM!!! It all catches up to me.  I need a day to recuperate.  It was very difficult over the summer because it seemed we were constantly on the go and it even seems that way now with school.  I should be taking advantage of the kids being in school and cleaning the house and keeping things organized, but I feel little energy and motivation to do so.  Housework can be difficult because I'm very limited on what cleaning products I am able to use.  There doesn't appear to be much in our area for organic cleaning supplies.  I have heard Lowe's may carry some and I will need to look further into that. It's also difficult because we live in an old home with steep stairs to the laundry rooms and to the second floor.  I'm wiped out by the time I get to the top of the stairs, and that's even when I'm not carrying anything, like a basket of laundry or the vacuum. 

The kids have needed to adjust to my lack of energy as well.  They were able to understand it while I was sick because I was in and out of the home/hospital.  But now, almost a year and a half of being hospital free, they think that I'm better and everything should be like it was before.  I try to remind them of what I went through and the affects it can have.  I explain that it will get better someday but it will take time, and that I'm still on some medications that will prevent me from gaining that strength back right now.

We're all being patient, taking it day by day.  I know it will get better.  Eventually, I will be able to run around, exercise, and play, or even do simple household chores and not be worried about being winded, or coughing or my heart palpitating like crazy!!!

It's just a matter of one day at a time and dealing with the now rather worrying about a future that no one can control.  It's living in the moment and taking advantage of the things you can do!!!

Image source: http://funandfit.org/wp-content/uploads/2011/02/the-energizer-bunny-energizer-bunny.jpg



What the "Eff" ?!?!? Chemo Brain Does it Really Exist!!!!!!

"Don't Forget"...this should be my daily mantra!!!

I haven't always had the best memory, but this is ridiculous!!!!! 

I was just getting ready to leave to have lunch at school with my son and went to get my wallet.  I spent 15 minutes searching the house from top to bottom and could not find it.  Then all of a sudden I remember putting it in my daughters book bag after having lunch with her yesterday!!! And this is just one instance of this.  I can't even tell you how many alarms I have set on my phone to help me remember things.  It's really becoming quite a nuisance!!!!

I haven't taken the time yet to discover if "chemo brain" is an actual phenomenon or its, no pun intended, all in our heads.  It seems that whether its long-term or short-term, I can't remember a damn thing anymore.  It can be something as simple as one of my kids stating they want something to eat and, if I'm in the middle of something, I'll tell them I will get it when I'm fninshed or just give me a minute.  Well, needless to say, that minute turns into five, ten, sometimes even 30 minutes to an hour.  I realize after they come to me asking again that I needed to get them something to eat. 

It's really a wonder I haven't burnt the house down.  I have left candles burning when I've left the house. I have actually forgotten about pasta sauce on the stove which burnt to a crisp and ruined my plastic ladle that I left in the pot!!!

Conversations with friends and family I can hardly remember.  My husband just reminded me yesterday of going to a Steeler game at the end of the month and I have no recollection of having that conversation!!!  I'm sure its just as frustrating for them as it is for me.

I really don't want to do much research in what the cancer world calls "chemo brain" because the less I know medically out there the better for me.  I tend to worry too much over medical conditions and the only information I really know about leukemia is based on my doctors and the hospitals information they have provided us.  Sure, maybe I should take more of an active role, but like I said, I tend to obsess over those things and I think it would be more unhealthy to know every little aspect, good or bad, and just to continue with the "need to know" basis.

Who knows, if I did do some research, maybe I would forget what I read...Hahaha!!!

Seriously, though, does anyone know much about this or has experienced it themselves?  I know we all forget things from time to time.  But this is something chronic that I experience daily.  It can be little things as to where I placed something, to important dates or phone calls.  At least I haven't forgotten to pick my kids up from school, but that's what my timer on my phone reminds me to do. 

And I even have my online calendar synced to my cell phone to remind me of appointments!!!  It is so useful and I'm so thankful for that feature.  It's so convenient if I'm somewhere and need to schedule an appointment.  When I enter the information on the calendar, from home or on my phone, it automatically syncs it to the other device.  So, this is one way for me to keep track and a tab on things. 

But what do I do for those little things, like where I place something or put something somewhere for safe keeping?  I know we all have done it but this is beyond comprehension as too how many times it occurs.  I started a "chore basket" for my kids.  If they leave something out it goes in the basket and they have to do a chore to get it back.  Maybe I need to start a "chemo brain" basket.  If I need to put something away, I can just start a collection in the basket and when I have the actual time to put things away in their rightful spot, I will remember more easily.  I'm open to hear any suggestions!!!

Stay tuned for my next blog...hopefully, I'll remember to write it!!!  Hahaha ;-)

Image source:
http://www.doyouknowcancerblog.com/wp-content/uploads/2010/10/iStock_000011818352XSmall.jpg