Ziggy Fights!

There is so much to report from my appointment today that I thought I should blog it instead of trying to just Facebook the information.

Bone Marrow Biopsy: shows NO sign of Mantle Cell Lymphoma.  It also shows that my Stem Cells are now 100% Gene.   However, I still do not feel any loyalty to the Cleveland Brown’s yet (sorry Gene).

PetScan:  No evidence of Lymphoma!   However there was new activity on my vertebral bodies.  They think this is related to bone marrow activity as Gene’s stem cells continue to take over.  There was a short segment of the small bowel that lite up and is most likely related to Graft vs Host Disease.  Bottom line is that I was told not to worry and continue to use steroids to control GVH.  I can back off on the steroids again tomorrow as things are moving like they should or are at least getting better.

Pulmonary Test: No results were ready to be shared so I am sure I will hear something Tuesday.

Blood Flow from Lines and Port:  None of my lines would give blood today so they had to use CathFlo on the port again.  Cathflo, prayers and meditations finally produced enough blood for testing after 3 hours in the clinic!!!!!  Tuesday I will have to have a Flow Study to determine why there is no Blood Return.  They will not consider taking out the port as I still have to give myself magnesium 5 nights per week.  Having GVH means they cannot back me off any medication yet so I have to just be patient awhile longer. 

What a journey!!!!!  I am glad that my appetite and energy are slowly returning as I have felt like a zombie most of the month.  Ben and I went out for breakfast and I had my favorite Corn Beef Hash and Cheese Omelet.  I ate the whole thing!!!  I cannot tolerate bread right now so Ben got my toast but he did not seem to mind.

August 18, 2011 marked day one hundred days since stem cell transplant. It was not a day celebrated with miraculous healing, sudden energy and all the things secretly hoped for. It was another day filled with the difficulty of keeping food on my stomach with an energy level at near zero. These one hundred days have had their ups and downs. Just encase you missed any of them let me recap the physical side of healing.

• The first 30 days or so were uneventful which caused some concern among the doctors and nurses. They all wanted to see some Graft vs Host Disease occurring to know that Gene’s stem cells had the ability to fight against any attacks from my lingering stem cells. They got their wish when I developed GVHD of the skin. It started in my arms and spread to face and scalp and legs and feet. The itching at times was unbearable and I was on various creams and anti-itching pills and finally Oxycodone just to take me away from the itch. This last several weeks. Slowly it fading and I thought I was in the clear.

• Then I was told my globulin level was low and needed an Intravenous immunoglobulin (IVIG) treatment. I was not looking forward to this as last time I had this my blood pressure skyrocketed. The treatment took 5 hours and during the treatment they decided to try and open my lines on my Hickman Port using Cathflo. When the IVIG finished they began work on opening these lines. The first two cleared fairly well but when I took a deep breathe to help them but during trying to clear the third my ears started ringing and weird sounds came from my mouth. I tried to tell the Tim and the nurse what was going on but no one could understand me. Doctors and nurses were called into the room and I was accessed for a stroke. My symptoms started to improve but as a precaution my doctor sent me to the Emergency Room for an EKG and CT Scan of the head. I was observed for 5 five and when all test came back clear I was sent home. No one is really sure if it was a reaction to IVIG or Cathflo or a combination of the two but man did it scare me to death.

• Blood work one week revealed I had a urinary track infection but that was cleared up quickly.

• Blood work also showed that my magnesium was staying too low so I went from 3 IV infusions at home weekly to 5. I am still at five today.

• I noticed when the number of days I was to give myself magnesium increased so did my diarrhea. This went on for a couple weeks but suddenly decided to turn nasty and vomiting was thrown into the mix. I had trouble taking my medications as I was gagging. The last full meal I remember having was on August 5, 2011. Boast, Sierra Mist, Jello and Applesauce became my friend. However, the time came when I could not even keep these down. Tim became alarmed as I would “black-out” or faint during some of these vomiting episodes. The doctor ordered another CT Scan of the head with and without contrast and an EEG. He wanted to rule out a brain tumor and seizures. He also ordered a colonoscopy where I would be scoped from top to bottom. All these tests occurred last week. The CT Scan and EEG showed a tumor less normal functioning brain so that was a relief. A biopsy taken during the colonoscopy revealed GVHD pretty much throughout my intestines and stomach. I was stated on a high dose of steroids. I am finally able to eat more and keep food on my stomach longer so I hope my energy level improves with that.

• However, steroids come with their own set of nasty side effects. The first one being depriving of sleep. Last night I think I got an hour of sleep. Instead of fighting it I have loaded up my iPod with books and listen to them to relax. It helps some. Steroids have also caused my blood sugar to rise so I am on insulin to control that. I have to check my levels 4 times a day and correct when my blood sugar is over 150. I am okay with checking my blood sugar but I cannot give myself a shot so I look to Tim, Ben and Becca to do this for me. I am told this is only a temporary situation and they could start tampering back my steroid after a week.

The Positive Side of the First 100 Days

So as you can see this has been quite a ride for me. I am not use to be so beaten down physically. However, my circle of family and friends keep me going spiritually and emotionally. Last week a 5K walk was held in my honor. This was sponsored by my Church, Messiah Lutheran, spearheaded mainly by Laura and Susan Bennett and Carol Bray. My sons Cross Team showed up in huge numbers either to run or support the runners. There were about 150 runners/walker there.

My secret desire was for Ben to win the race, but isn’t that every mom’s. As it turns out his cross country coach Mark Bierkan won. I could not think of a better winner then my son’s coach/mentor and friend. The day after the race Mr. Bierkan gave his Gold Medal to Ben saying he desired it. Ben in turn gave it to me saying I was the real winner. Wow tears really flowed.

Mark Bierkan - Winner

Many members of the Church were there as well as many of my clients from Project SEARCH. I was unable to attend because of my physical state but the pictures warmed my heart. I hope you enjoy them as much as I did.

It’s been awhile since I have posted but I know that many of you  keep track of what is going on with Jennifer either on facebook or at://helpjenniferlinnabary.blogspot.com/.  We continue to be overwhelmed by the outpouring of family, friends, strangers and community.  Jennifer is doing so well in her fight and recently received two good pieces of news.  Her bone marrow continues to show that it is 99.5 my brother Gene’s.  We figure the other .5 must be the milkman – sorry mom!!!!  Her most recent petscan shows “no evidence of recurrence lymphoma”  We are truly blessed.

As we all know for the next year this is a very precarious situation and one that calls for constant vigil.  Thru faith and the support of this extended family, we know we will get her to the next part of the journey.

The journey continues.  There are still battles to fight and I am sure there will be times of frustration for Jennifer.  I know I speak for a lot of us that her strength has been a tremendous source of inspiration and pride.  She battles this foe with such fortitude that it rallies us to do all we can.

It is that rallying that brings me here tonight.  We all need to rally in continuing the support and in encouraging people to join our fund raising efforts.  Fighting cancer is not an inexpensive endeavor.  It is quite an expensive one.  Being unable to work and being the being the main source of income for the household has left the family financially strapped.  We need to enlist individuals, groups, families, school groups to take on our cause.  No amount is too small and certainly non is too large!!!  No activity is to minor.  Car washes, yard sales, bike events, runs, etc are all great ways to help raise monies.  We hope soon to have some products available on the web site to sell as part of this fund raising effort.

It is your help that will get us to our goal – having Jennifer in full remission and not financially strapped and worrying about how all the medical expenses will be paid.  Encourage everyone you know to visit  http://helpjenniferlinnabary.blogspot.com/ and hit that donor button.  The life we continue to safe and support is one that pays us back so much more in inspiration.

Thanks for taking the time to read this and thanks for allowing me to encourage you to help in our fund raising efforts.

BELIEVE

Still the oldest sister

Nora

Tomorrow I turn 51 and I can truly say “What a difference a year makes!”  Last year on my 50^th birthday I was parasailing above the ocean, free as a bird and rejoicing over being cancer free. This year there will be no parasailing but I feel freer than ever. In addition, I can still rejoice being cancer free although I am still in the midst of this battle. 

Life has taken on a whole new dimension for me, one that maybe I can best describe through these selected verses.

Ecclesiastes 3:1-8 (New International Version (NIV)

A Time for Everything

 ¹ There is a time for everything,
   and a season for every activity under the heavens:

 ² a time to be born and a time to die,

I cannot tell you how many times in the past few months I heard the words “…and you could die.”  My treatment was/is not without risk and I am reminded of almost daily.  Death has become a reality which makes living each moment, each day more important.  A Cliché I know but for me it has become more than that.  I am not promised tomorrow (nor are you) but while I am here I am going to live as though today were my last day.  It has become important to me to improve my relationship with God and to have that take on a more personal feel.  I want to be fully alive so death will have no sting.

 ³ a time to kill and a time to heal,

How well a cancer patient knows this statement to be true.  In this round of treatment a lot of Jennifer had to die.  The Lymphoma had to be killed and with that, most of my stem cells.  Now I am 98.5 my brother (THANK YOU GENE) but this transformation has also occurred on a spiritual level.  It truly feels like a literal re-wiring of my spiritual system as well as the medical as my body actually changes to accommodate more of my spiritual essence as well as Gene’s stem cells. I have had the chance to stop and blame God and say “Why me AGAIN” but I did not.  I chose to settle deeper into God’s word and find strength in what the Bible has to say about suffering but more so what it has to say about LOVE.

   ⁴ a time to weep and a time to laugh,

Judith Orloff states. “Tears are your body’s release valve for stress, sadness, grief, anxiety and frustration. Also, you can have tears of joy, say when a child is born or tears of relief when a difficult time has passed. In my own life, I am grateful when I can cry. It feels cleansing, a way to purge pent up emotions so they don’t lodge in my body as stress symptoms such as fatigue or pain.”  As a therapist I know this is true but as Jennifer I have a hard time letting down my guard and letting the tears flow.  Mostly I cover then up with humor.  There is a time for each but I do believe that I have become better at finding the balance. I have witness the physical consequences of holding on to the tears for too long and do not want to repeat that experience.  

¹ There a time to mourn and a time to dance,

I have done plenty of mourning as I realize that I will never be the Jennifer I once was. Things will never be the same again and with that realization I dance because I know God can create something more beautiful then what was there before. I can find more time for dancing (well rejoicing…this body don’t dance).

   a time to embrace and a time to refrain from embracing,

Physical touch is difficult when you are Neutropenic as you are afraid of getting germs from others and others are afraid of giving you germs. It is probably the loneliest part of the journey. 59 days of being quarantined have made me appreciate the hugs I use to run from.  There will come a time when embracing is okay and all I can say is watch out world!!!!

 ⁶ a time to search and a time to give up,

During my first battle with Lymphoma I would search for the answers on why me, why now, why???? When I was diagnosed with recurrent Lymphoma I initially blamed myself and wondered why and what I could have done to prevent this. I gave up that quest quickly and instead focused on searching for inner peace and a closer relationship with God. I have found peace when God found me (or when I let him in).

⁸ a time to be silent and a time to speak,

This has become so critical in my personal devotion time. My mind is super activity and is always asking questions, “how does this passage relate to me, why doesn’t this passage resonate with me, what is meant by this, etc.” I have learned that I need to be silent and just listen. Some of the imagery and answers I have been given during these still moments have been truly life changing.

 ⁸ a time to love and a time to hate,

Do I still cry, scream, and wish this was not happening to me. More times then I care to admit. I HATE CANCER/LYMPHOMA! Cancer sucks BUT Love wins!  I may not be the Jennifer I was last year and I will not have 300 people singing happy birthday to me and then sail like a bird over the ocean but I KNOW I AM LOVED AS A CHILD OF GOD!

I am 44 days out from Transplant and have quickly discovered how dichotomous my life has become.  It can also be seen as choosing to look at the glass as HALF FULL or HALF EMPTY.  Here are some examples of what I mean. 

HALF EMPTY: My energy level is pretty much nonexistence, taking a shower is not the relaxing activity it once was as I feel drained of energy afterwards.

HALF FULL:  I am alive!

HALF EMPTY: I use to know what day of week it was by the meetings I had scheduled.  Thursday meant job club, etc.

HALF FULL(?):  I only know what day of the week it is by what my pill container label reads.   I have also  resorted to setting an alarm to take my afternoon medication.  I just need to remember what to do when it goes off.  If I procrastinate, I forget.

HALF EMPTY: I have GVH of the skin and I still itch after a week and a half. 

HALF FULL: I have peach fuzz on the top of my head which makes itching pleasant!!!

HALF EMPTY: I have no appetite for food and some days struggle to get in three so-called meals.

HALF FULL:  I have lost weight.

HALF EMPTY: My day usually entails getting up, setting in my recliner, taking a nap, setting in my recliner, going to bed.  My mind still feels like mush and I cannot concentrate for long periods of time.  It makes reading a book difficult and often times mindless games are all I can manage.

HALF FULL: I have plenty of time to work on my farm (Farmville) and to read and work puzzles. 

HALF EMPTY:  I am not yet at the half way point of this quarantine of 100 days and I am going stir crazy on most days.

HALF FULL:  I have been “kidnapped” and taken to my favorite little coffee shop for a chai tea latte with an extra pump of chai.  In addition, my friends Skype me into Church so I can still be with my Church family.  Skype and Facebook have become my connection to the outside world.

HALF EMPTY:  I have Chemo brain.  It can be embarrassing and has resulted in some paperwork being delayed.  I have had several forms for my Disability application returned because I have done something wrong (something stupid like putting my birthday instead of today’s date or not signing a form). 

HALF FULL:  A guess if there is anything good about chemo brain it gives me or others a good laugh at times. 

HALF EMPTY:   I was always a given, helping people in need, putting others before me.

HALF FULL:  I am LEARNING to receive and allow others to help me.  I understand that Jennifer needs to come first.  There are many wonderful people out there that have stepped forward to help.  My family and I are overwhelmed almost daily but the outpouring of love we have experienced.  I am at a loss of what to say or how to repay the many acts of kindness. 

Medical Update

I had a Bone Marrow Biopsy and PetScan that showed that my cancer is in Remission!  In addition, the stem cell transplant is working and 98.5 of my brother’s cells have taken over my bone marrow.  Only 1% of me remain.  I am not sure what the other .5% is and neither is the doctor but we can have fun with it and say that it is an Alien or whatever.

I only go into the clinic once a week and have home health care coming out once a week for line care.  My counts continue to be okay with a few minor obstacles from time to time.  They are concerned with my Magnesium level and if those counts are low again may I have to go on IV Magnesium five days a week instead of three. 

So here I sit in my recliner trying to figure out ways to make August 18 (day number 100) come quicker.  I need to remind myself that that day does not mean freedom from the disease (as I will be monitored for life).  However, it is a milestone and a major one! 

Here is a verse that has come to be one of my favorites: “to the end that you would become a huge oak of wholeness for many other broken people to see.” Isaiah 61