Ziggy Fights!

Today we pause to remember Tom Wilson Sr, the creator of Ziggy.  While Ziggy is timeless and lives on thru Tom Jr, we pause to remember his creator on this day.  I choose to use the spelling as creator versus creater as Tom Wilson certainly created at universe and an experience in his creating of Ziggy.  I know that without Ziggy my sister in her journey would not have re-discovered on her “walk” herself.  Ziggy helped her do that.  Ziggy brought back a focus and a regeneration and yes brought her back and closer to the ultimate creator.

So today please pause and remember Tom Wilson Sr and keep his family in your thoughts and prayers.  Then ask your self the question that Ziggy is asking in this cartoon:  “How much time do you have to Waste?”

Rest in peace Tom, may the heavens be full of Ziggyisms!!!!

Nora

Below is a Copy of an Article I wrote for my Church’s Newsletter.  I wanted to share it here and everywhere so people can see Heart of Messiah Lutheran Church and the many sides of Healing.

Many of you know the story of my battle with Mantle Cell Lymphoma, diagnosed in April 2009, Stem Cell Transplant September 2009. Remission declared in that same month. Relapsed in February 2011, stem cell transplant May 2011 and remission once again declared. These are the hard facts but what I would really like to share with you is the fact that LOVE HEALS.

The heart of Messiah Lutheran Church is like nothing I have experienced before. The love of Jesus has really been shining through on me and my family. I define love not by just the monetary gifts that I am most in awe and grateful for but the other acts of love that bring healing to the forefront. It goes without saying that, your financial gifts have allowed us the opportunity to focus on healing rather than on where the next meal is coming from or whether there will be gas in the car to get me to my next appointment. I have seen financial gifts of all sizes being given and my heart sings out with each one. I am touched by all but one gift stood out early on that brought me to tears. One Sunday, one of Susan Kresser‘s boys came up to my son and handed him a wad of one dollar bills. He said this was for Ben‘s mom. I can only imagine the boys breaking into their piggy bank or taking their allowance and handing it over selflessly. I still carry those ones in my wallet as a symbol of pure love that these boys poured out for me. LOVE HEALS

The healing power of love that comes through prayer has sustained me in some of the darkest hours. One of the most anxiety producing activities I have to endure is the PetScan. This test tells the doctor definitively if the Lymphoma is in remission or is rearing its ugly head. I have to lie still for thirty minutes and focus on the positive. Without fail there is one sister in Christ that always appears in that tunnel with me saying her prayers. That person is Sharon Schuesler, it has been such a comfort to have her presence and reassuring smile in my mind. LOVE HEALS!

There has not been one day that has gone by that someone in my family is not in contact with someone from the Church. It may be a Facebook post, a Skype conversation, a call to Tim or an arm around Ben and Becca. Not one day has the love of Messiah not been present in our lives! LOVE HEALS! 

I have so many stories of love and healing to share it will take me a lifetime to write them all down but I want to share as many of them with you as I can. Please do not be offended if I forget to mention you by name but know your acts are in engraved in my heart. This journey with Lymphoma has changed me in ways that I could never have imagined possible. My faith is deeper and brighter then I could ever have imagined. My relationship with Jesus is real and alive. All of this began with a statement of love from the Church saying we are in this with you all the way and continues to grow in ways I could never have imagined. In the months to come I would like for you to walk with me as I share more of my stories of how love heals and what that really looks like and feels like on a personal level. Love that shines through in the midnight boxing matches with God, in the Bible studies where the light bulb finally turns on, where physical fatigue has let me wondering if the fight is worth it, and where I am so full of love that I am giddy and feel like I can fly. LOVE HEALS!

I rejoice greatly in the Lord that at last you have renewed your concern for me. Indeed, you have been concerned, but you had no opportunity to show it. I am not saying this because I am in need, for I have learned to be content whatever the circumstance. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well feed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength. Philippians 4:10-14

Dr. Broun has given me the okay to attend a training in Sandusky, Ohio next week.  This will be my first big adventure since this journey started in March.  I will be attending a Guided Imagery program offered by Synergy Seminars with a good friend of mine who is a Holistic Health Nurse at Children’s Hospital.  I am glad to be going with her especially since she is a nurse.  I took a class from these trainers in the Fall and fell in love with their work and how powerful Guided Imagery can be in one’s life.  I knew at that time that I had to go through certification.  While going through Chemo I used their tapes to help me envision a healthy Jennifer, to see chemo not as a chemical screaming through my veins but a healing agent.  The class will help me professional and personal so I am excited on many levels.  It will also be the most I have asked of my body in quite a while.  The training will be Monday through Wednesday in Sandusky.  We will travel back Wednesday night and have a day of rest on Thursday, then the class continues on Friday through Sunday but here in Cincinnati.  Don’t worry the trainers know about my medical condition and my friend has been with me through this latest journey so I know I will be safe.  The biggest things I struggle with are how to pack and my steroid side effects that I will get to in a minute.  I know how to pack for trips and in the past could throw together a suitcase in a matter of minutes.  Now I have to think about all the medications I need to take, my magnesium, the pump for the magnesium, what about the medication I take as needed, which ones do I bring.  I should bring my CPAP so I don’t drive my roomy out with my snoozing.  Lots to plan ahead for but I am so looking forward to it.

Steroid Woes

Steroids are wonderful in that they are relieving the symptoms of my Graft vs Host Disease.  I can eat again and my energy level is returning.  However the side effects are TERRIBLE.  They are all equal in my hatred of them.  Let’s start out with how I look.  I have developed a phenomenon called moon face.  My face is as round as the full moon.  I also call it a fat face, it is not my face and I know it freaks people out who know me but may not have seen me in a couple weeks.  Then there are the emotional roller coaster rides that come out of the blue.  Usually in the evening I can predict that one will hit around 6:00 but now I do not know.  My family has grown accustomed to these and all I need to say is that it is the steroids and they relax a bit.  So now you have an emotional Jennifer walking around sleep deprived because steroids will not let me sleep more than a couple hours at a time.  Physically the steroids have taken a toll (and I thought they were a strength builder).  My hands cramp horrible and without warning.  I can be holding a fork and all of a sudden they cramp and I drop my fork.  It usually passes in a few moments but then it comes back in waves.  I have to have my food cut up so that squeezing does not set off a cramp.  The worse of all the physical stuff is weak thigh muscles.  One day I tried to get out of my recliner and I could not do it.  The muscle in the legs do not support me unless I have solid base to push my arms on or someone pulling me up.  It is difficult situation to be in and means that I have to rely on others just to get up and get moving.  I am trying to balance the times in the recliner vs a kitchen chair when I can use the table and chair as support.  The good news in all of this is that will go away once the steroids are out of my system.  The doctor is tapering me off slowly but I still have a couple weeks on them I am sure.  Once they are out of my system I can start coming off some of my other medications and then off the magnesium pump.

I had a more testing at Jewish today and an appointment with Dr. Broun.  I thought it deserved another blog post instead just a Facebook update.   The testing was to see why my ports and catheters were not allowing blood to be drawn out.  I was not exactly sure what the procedure would be like and was a bit intimidated when I walked into the Cath Lab.  It felt so much like walking into the pre-op area that I freaked a bit.  The nurse asked if I needed to use the restroom before things got started and I said yes.  I  needed time to compose myself.  A quick prayer eased my nerves and I came back out to dress for the procedure.  The nurses were very good about explaining what would happen and soon I was wheeled off to one of the labs.  Dye was placed in my port and the x-ray showed that the port was operating just fine and no blockage was present.  Then they switch to the Hickman catheter and tested all lines and each x-ray showed that I had a developed a fibrin sheath, a tubular scar in which the catheter becomes encased in a fibrotic sheath, which may harbor bacteria and make it difficult to withdraw blood from the line.  Bottom line is that this catheter will not allow blood to be drawn but will still work to give myself magnesium treatments.  Dr. Broun agreed that instead of trying to fix it we would use the port for blood work and the Hickman for magnesium until that time I can have it removed.  I am really okay with that!!!!!!!

My GVHD is improving daily so my steroids have been reduced again!!!!!!!!  I will go back Friday and if improvement continues then it will be reduced again. 

I asked Dr. Broun to explain the PetScan results again as I was still concerned over some of the findings.  He eased my mind by saying that my bone marrow was still very active (Gene trying to outdo himself) and that the GVHD was showing on the Scan.  Nothing at all to be concerned about. 

What really blew me away were the results of the Pulmonary Function test.  I worried about this because of the fatigue I felt during the test and the tiredness I experience at home.  The test revealed that my pulmonary function had actually improved since May when I was tested prior to transplant.  They believe that the weight loss I have experienced through this process (55 lbs) has helped tremendously.  I was not expecting that at all.  I walked out of the office with a little more spring in my step. 

My appetite is improving but my taste buds are shot so trying to find something to eat is still a struggle.  Food has to be spicy and breadless in order for me to enjoy it at all so I am experimenting with new foods.  My energy level is improving and I feel more like Jennifer each day!  Life is good!  GOD is GREAT!

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.