Can you belive that yesterday was my 11 month post transplant anniversary? I am still dumbfounded that it has been that long already! I visited Dr. P today up at USC, and he couldn’t be more happy with my progress. I am down again on the prednisone (steroid) to 10 mg per day. He said he was really happy with that, and not to worry about the dosage because 10 mg is what a normal body would produce on its own on a daily basis anyway. We will continue to lower my dosage over time, but can’t risk doing it too fast and have to start all over again. I’m perfectly fine with that! All my blood counts look great, and my GvH symptoms, although still lingering, are a good thing proving that my “new” system is up and running and strong! Can’t argue with that. I’ll take the skin discoloration, sore hands, and mouth sensitivity any day!

Dr. P was so impressed with my physical ability, fitness level and overall appearance (and of course, my test results), that I don’t have to visit him for one month! This will be the first time that I don’t see him for that long of a period. When I do return I will be celebrating my 1 year anniversary of my transplant! Coincidentally, (although I believe it is fate), that will be the weekend of the Disneyland 1/2 marathon that I love so much! My goal last year was to run in the race and this year I WILL be running!

My next set of tests at one year will be health based tests, such as bone density, mamo, pap, and tests that will determine if I need all of my immunization shots again. We will also check hormone levels to determine if the radiation has put me into menopause….

I LOVE LIFE, AND ALL OF YOU! Keep your prayers flowing and your spirits high!

With Grace and God,
Karen

Last month Dr. P found a blood clot behind my left knee.  An ultrasound confirmed that it was a complete block of the main artery so my blood flow has been limited from the knee down.  My ankle and calf have been swelling.  We first thought the swelling was due to my steroid medication, but then found the clot.  My body just has to dissolve the clot on its own, but blood thinners help the process along.  Dr. P but me back on blood thinners, first, shots in my tummy, then to oral medication.  I am going to need to stay on the blood thinner for approximately 3-6 months, or longer if needed.  I have been “ok’ed” to continue working out at the gym, working both with my trainer and cardio on my own, but I am to avoid hard pounding on my leg as to not dislodge the clot and have it travel to my heart or lungs.  I think it is already in the process of dissolving….I’ve been willing it away!

On the other hand, we have continued to lower my Prednisone (steroid) down to 7 1/2 mg per day.  I have been having side effects to the lower dosage, but working my way through them.  I have been experiencing horrible headaches, but Tylenol takes the edge off and I manage them well.  Looking forward to them going away…

I have been a guest speaker for two events in the last month.  One being for The Be The Match Foundation.  It was a gala fundraiser event held in Long Beach.  The theme was “Sing for Hope” and the night included a silent auction, dinner, Broadway revue entertainment, and live auction.  I shared my story, and a donor/recipient first meeting took place.  It was very touching and emotional.  I look forward to attending more events to support Be the Match Foundation.

Overall, I am doing well.  I find myself getting a bit impatient with my recovery.  I want to be back to normal.  I have to remind myself what I have been through and go from there.  Sometimes my body reminds me….

I hope all is well with everyone.  I will try to update more often.  I am seeing Dr. P every two weeks at this point.

Love,

Karen

Steve, Christian, Lauren and I took a wonderful, needed, and well deserved family trip to Florida.  After almost a year of this battle, we as a family really needed to “get out of the element”, go somewhere where we could relax and escape the stresses and “fears” of  this Leukemia.  No one knew us, and we enjoyed quality family time that we all truly missed out on this last year.  We participated in a  Walt Disney World 5K  run as a family.  I wanted Christian and Lauren to realize that life will get back to normal soon, and Mom is still Mom!  We didn’t really want to come home!

It is with deep sorrow that I mention that my sister Heather’s sister-in-law, Sarah Allison Greene (Allie), passed away last Tuesday March 1, 2011.  She battled colon cancer for two years.  This last year she and I had a connection with our diseases and we were able to share stories about our treatments and feelings.  If you are local to Orange County, you may have heard about Allie and her beautiful life in the newspaper or on channel 7 news.  Her husband Brian celebrated her life with a “Cancer Free Party” following her funeral service in a big, red barn as Allie had always wished for.  The party was emotional and inspirational, and most of all, fun!   Allie will always live in our hearts.  She was 31 years old and is survived by her husband Brian and 3 year old beautiful daughter, Riley.

Once again, God has our plan.  I have a gift of life here on earth that I will never take advantage of and always respect and honor.  Allie now has an eternal life watching over us and guiding her daughter through life from above.  No one has the answers, we just need to BELIEVE!

I know my entries have become less frequent, but I will keep writing!  Just keep checking!

It is with God’s grace, family, loved ones, and friends that I keep on keepin’ on!

Karen

I received the most exciting letter in the mail this week.  It was from the MUD  (Matched Unrelated Donor) department of City of Hope.  When I opened it, I had to sit down…. It was a letter from my donor!  It was short and sweet due to the fact that although we can have contact with each other through mail, we really can’t say anything about ourselves due to privacy laws.  Our correspondence with one another has to go through the MUD department of City of Hope and be reviewed before it is forwarded on to each other.   My mom and I each sent her a thank you card after my transplant, but I never expected to hear back from her!  Below I have re-written her letter for you to see.  I did not change anything, as you can see, English is a second language for her.

Dear recipient,

I was very happy, receiving the good news of your state.  Your rehabilitation reveals a meaning for the things I do and that’s the most beautiful Christmas present for me!

Whenever you need a second donation, I will be there for you.  Have yourselves a merry, meaningful, calm and especially healthy Christmas Eve.  In the end I would like to thank you for the nice card.  Hugs!

Your donor friend

You can only imagine the tears I shed reading this heartfelt letter.  I am tearing up as I share it now with you.  I can only keep saying it over and over…GOD IS GOOD!  I lay in bed thinking about the fact that I had 4 perfect anti-body stem cell matches, and this Angel sent to me was categorized as the #4 option.  Reason being that she was female and the oldest of the four (at only 38 years old I might add!).  We learned that being male and younger is a better option.   I can only believe that God had a reason that donors #1,2, and 3 were either unreachable or unavailable to donate my gift of life.  I feel a spiritual connection to my donor #4, as I am glad to understand from her letter that she feels the same with me.  She has been placed in my life, in my body, for a reason.  I am so blessed to have not only a spiritual connection with her, but literally, a physical connection, as our DNA is now the same.  How does God do that????  I can only BELIEVE!

I have been asked to be a guest speaker to share my story at a fundraiser gala in April for the BE THE MATCH foundation!  It will be an evening of entertainment, food, auction and fun in Long Beach at the Grand Hotel.  I am hoping it comes to fruition and that I can start the journey and path of motivation and life giving opportunities of Marrow Registry to others.  God has me on a mission, and I can only follow what He is providing for me.  I will keep you updated on the specifics of the event.  It would be great to have friends and family attend and support the cause.

Our family is taking a trip next week to share in our love for each other, and reconnect as a family unit without the fear of “mom being in the hospital” or “mom still being sick”.  We are all excited to spend quality time together and reaffirm “mom isn’t going anywhere”!  Life is slowly getting back to normal.

Please continue to pray for Allie and Bart, as God’s healing powers are miraculous!

With Love,

Karen

Steve and I have a friend that we met at City of Hope, Bart, who had a stem cell transplant just weeks before me.  We became companions, both having our ups and downs in the hospital during recovery.  We enjoyed art classes together, playing cards, bingo, and just talking about our situations and lives, and how AML has impacted our lives, good and bad.  Bart went home on target a few weeks before me back in September, but was readmitted with GvH complications.  He has been in and out of the hospital several times since.  He is still struggling with major GvH and possible allergic reactions to specific meds that we must be on after stem cell transplant to avoid rejection issues.  Bart’s body is not reacting in a positive way, although his incredible strength and mind are getting him through this tough time.  PLEASE keep Bart in your thoughts and prayers.  Bart went home again yesterday in the care of Hospice.  Bart, if you are reading, you are always in our hearts, thoughts and prayers.  Steve and I can’t wait to visit with you, Leslie, and meet your kids!

Hug your family today!

Karen

My blood counts are doing great!  I’m actually in the “normal” range for white blood cells and hemoglobin.  My platelets are just under “normal” range, but to no risk.  This last few days I have acquired a head cold and cough and I thought that Dr. P would be more concerned about it today at my appointment, but my lungs are clear, which is our main concern, so he gave me an antibiotic prescription to fill if I feel that I get any worse.  I am feeling better each day so I don’t expect to have to fill the prescription.

I am on an incredible road to recovery that I thank God for every day.  I am so grateful for all the thoughts and prayers that you all send daily….they truly get me through each and every day.  I am still working with a trainer at the gym a few days a week.  Although I am self motivated to get back into shape and remain healthy, it sure is comforting to have a gym trainer by my side to watch my every move and monitor my strength and muscle control.  I jog on the treadmill for short periods of time and I am always mindful that I can hit the “stop” button or grab onto the side rails if needed.  I do suffer from tingly and numb feet (as I understand is common among chemo patients), so once again the treadmill is my friend.

The family is doing great.  Steve is working like a maniac and likes the fact that I have become “mom” again.  Christian has proudly been accepted to Servite High School, an all boys private Catholic school for the fall.  We are very proud of his achievement!  He has also found a new love…the sport of lacrosse.  He has played locally for the last two years and hopes to further the sport through high school.  Lauren is in 6th grade at SSJ and plays soccer year round (her first love), basketball, and volleyball.  We are proud of all of her accomplishments as well.

We are ready to dive into our active lives that we are used to (doctor approved, of course!).  God has given me a cross to bear that I accept with Grace.  I will one day understand my true calling to this disease.  I believe the lessons learned by myself, my family and friends will lead us all to a life of understanding, forgiveness, gratitude and mercy.  Keep in mind that cancer does not discriminate….

I have had the comment made to me, “but why you?, you are so nice!”.  Although I understand what that person meant to say, we must remember that God chose me for a reason, and I will listen to Him and open my heart to the path he is leading me to.

With Passion,

Karen

My first visit at the Norris Cancer Center/Hospital at USC was last Wednesday with Dr. P.  Steve and I were  not sure what to expect from the freeways, to the downtown area, to the facility itself.  We were happily surprised at how easy the drive was and how nice and upscale the Norris Center is!  We registered as a new patient, drew my blood (directly from the vein now that my PICC line has been removed from my arm), and saw Dr. P.  At the beginning of the year he had reduced my steroid meds down to 10 mg.  That didn’t go over very well with my body.  GvH set in with intense mouth pain and sores as well as skin irritation and blistery hands.  Let me tell you, it is not easy not having the use of your hands!!!  Kiss yours right now and tell them you love them!  Dr. P increased my steroid at the appointment so that I could have immediate relief from the pain.  He also prescribed me another drug that works in conjunction with my immunosuppressant drugs (we call them the” limous brothers” because they are named Sirolimous and Tacrolimous).  This additional drug should take effect and help eliminate the steroid….eventually.  I hope it is sooner than later…I don’t particularly like being related to the Pillsbury Dough Boy!  One thing to understand is that experiencing GvH is not a bad thing.  It actually lets us know that the new stem cells are in there fighting my old sick cells and doing their job.  We just need to monitor them and get them to settle into my body and treat it as its own.  The drugs keep it “in control” until that happens naturally.  This process could take months or years.

I began working out back at the gym with a trainer 2 days a week!  Wow, what a great feeling!  The days I do not meet the trainer I do cardo on the tread mill or eliptical machines.  I don’t have the courage yet to go out of my neighborhood on a “run/walk” yet because I’m nervous I may have trouble making it all the way home.  I am up to about 20 minutes of walking on the treadmill, but by that time my legs are tingling and feel as they are falling asleep on me.  My hip and knee joints are very weak and give out whenever they feel like it.  They have taken on a mind of there own.

If you can imagine having an injury, lets say you stress your back, or sprain a joint, your rehab is slow and possibly painful but most likely you can push through it and overcome it.   What I have learned is that my ENTIRE body has been injured.  I get a lot of comments not to “push so hard and so fast”.  Believe me, I do not have the same body as I did 8 months ago!  I feel like a different person.  My mind is still as strong and positive as ever and that is the game.  I want you all to know that my doctor encourages my energy level and desire to get my body back into shape.  I do not have limitations other than “do what I can do, and rest when needed”.  I take that advice to heart.  The more I move and motivate, the more healing will go on in my body.

My next appointment is Wednesday.  Back to once a week until we get back in control with the GvH.  I have been driving the kids to school and sports and able to watch them play.  I pretty much do what I can and I am enjoying it!  Did you ever think you would enjoy doing laundry????

I must tell you again how incredible my family has been, especially my husband Steve.  The love, support, understanding, back scratching, foot rubs, and anything I need, he is always willing and available!  Christian and Lauren…..I can’t say enough about how much they help around the house and any need I have.  To my parents, sisters, and wonderful friends, THANK YOU!

Love, Karen

Today’s clinic appointment went very well. She had an MRI on her lungs and they are as clear as can be! Her blood counts are good. Karen did have her Pik line removed from her arm! YEAH! She is having an issue with her mouth and taste. The inside of  her mouth is like raw. She explains it as sucking on a cough drop or hard candy for a long time. Everything is beginning to taste nasty again. Her doctor says it is GvH (graft vs host) and it may be chronic, meaning she will have to live with it. Because of this current issue, he did not lower her steroid medication at this time. Her next appointment is 01/05/11 at USC.

We all had a wonderful Christmas celebration together. Karen and family saw all of the Jolliffe side of the family on Christmas Day. Grandmother, Aunts, Uncles, cousins, and cousins kids, were there. She hadn’t seen most of them, for over a year. It was a surprise and so beautiful! We saw my side of the family the week before Christmas.  

We wish you all a Safe, Happy and Healthy New Year!

 LOL

As of today, Karen is cancer free! The results we have been waiting for, show NO abnormal chromosomes. And as I posted earlier, 99% donor DNA (Hilda) and 0 Blasts (no cancer). Her red blood cell, white blood cell and platelet counts are good. She remains at 10 mg. of steroid medication and has stopped the IV drug for the fungal pneumonia. Her muscle strength is gaining, and she got the ok to drive. Her next appointment is on 12/28. She will have her blood work done, a lung  x-ray, probably her pick line taken out of her arm and her steroid medication lowered to 5mg.

One bit of news that we did receive about a month ago, is that Karen’s doctor is moving from City of Hope to USC Medical Center. His patients could follow him or stay at City of Hope. We will now travel to USC. Ha! No thought needed there. I told him we would follow him home, if we needed to. USC has a small cancer treatment center, but does not have a transplant center. Her doctor will be in charge of putting one in place.

With the love of God, Steve, Christian, Lauren, family and ALL of you, we will celebrate the birth of Jesus and the new life of Karen on Christmas Day!

Have a very Merry and Blessed Christmas!

Karen’s last bone marrow biopsy shows 99% Hilda (donor DNA)!!   Karen’s “BLASTS” are at 0 – no leukemia!! Today’s blood counts are great!! We need to wait another week on the findings of any sign of abnormal chromosomes.

Karen’s doctor told her today that the regiment she went through of all the chemo and radiation was the most aggressive that they would give anyone. We knew all along that it was harsh, but not to that extent. The doctor said Karen’s counts and levels are exactly where they should be and that they couldn’t be happier, to be where she is at this point, is rare.

It’s going to be a blessed Christmas!!

LOL