The Caretaker

Hello Everyone!

It has been just over a month since Marsi's services and so many people have been reaching out to check on me, the kids, and Marsi's family, that I would like to again thank all of you for the strength and support that continues to be sent our way.  Losing Marsi has been devistating to us all.  She touched so many of us through her wonderful words and caring demeaner, that I like to think her spirit lives on with this blog.  

Generally, I am doing well, finding my way without Marsi by my side.  But during one of my harder moments of coping yesterday, I came across a blog entry that Marsi wrote for a fellow blogger last December who has a website that focus's on patient's and their caregiver's.  I, myself had never read this entry until yesterday, only now remembering that Marsi had told me she had written an article about me for another blog. With everything going on, I completely forgot she told me, so it remained hidden until now, where it was found during a casual google search.

For those of us that read Marsi's blog, it gives us another look into her fight with breast cancer and her struggle with me undertaking the role as her caretaker.  For me, it is a found treasure.  As I think back through our last year, she often would appoligize for having become such a burden, but to me, she never was. She never could be.  She was my partner in life and this was our road together, hard as it turned out to be. I never thought twice about being her caretaker and I know she loved me even more for that. She was my wife, the love of my life, my cutie pie. For my Marsi, I would and did everything I had to do.

Please read, or for some of you re-read, this article Marsi wrote and take from it that each and every one of us are only so strong.  That it is OK for any of us to accept help when life becomes overbearing. Be it help from family and friends, counslers and/or doctors, all we have to do is ask to recieve the support and strength we need to move forward in this life.

God Bless!

-----Steven


Rob Cares: Caring for Caregivers

Guest Blog: Seeing The Caregiver Through The Patient’s Eyes


My Caregiver, How Lucky Am I?

December 20, 2011 by Marsi White
0 comments

My husband Steve and I are unstoppable together.

 
It is 4:30 in the morning. I am awake like usual, with insomnia and a botched sleep schedule as a result of my chemo. My husband Steve is asleep. I grab his hand for a moment and let it fall gently back into the bed when I realize I intend to get out of it. He awakes for a moment and asks if I am okay, then almost as quickly falls back into a deep slumber. I retreat upstairs to make coffee and start my day, hoping my Twitter friends are awake for company.

 
This is our routine. He worries about me and tries to make sure I nap. I worry about him and try to be sure he naps and/or at least sits down for a couple of undisturbed minutes a day. His days are full of stress and anguish, mostly. For this, I have no recourse. Cancer has taken care of that.

 
Truth be told, Steve has always strived to be my “rock,” openly stating this as his goal since my initial diagnosis of breast cancer in 2009. However, when my cancer recurred in my liver the summer of 2011, there was a strong silence of this declaration. You could cut the air in my house with scissors because stress hung like sheets from floor to ceiling. An angry rant on Facebook made me discover how mad he really was…and not at me. At this ugly disease.

 
About a month ago, the mood lightened around here when Steve declared, “The last go around I handled your sickness wrong. I tried to be the rock. Now I realize that even the rock gets weathered in the storm.” His new goal and attitude leaves him wanting to help other caregivers and wondering why more is not said between them.

 
“I know what guys need. I also know what guys will do and not do. Maybe I should start a blog,” he stated one afternoon. A science teacher by trade, I knew that he was born to help others. But what I could not pin down is how he would find the time to keep a blog with all of the extra responsibilities at home and the dedication and long hours he puts into his job. Finally, he and I decided we would start with contacting the YoungSurvivalCoalition to find out how he and I could help the cause.

 
I feel no great joy to report he has learned many of the same lessons that I have. Tough lessons, but lessons nonetheless. He has learned that when people ask personal questions, it’s that they really want to know and it is OK to let them in. So, tell them. Find confidants that you can pour emotions into. He has learned that you may be surprised on who these confidants may be. He has learned that he is not yet comfortable seeking professional help, but there is generally not enough time to do so…hence, the importance of the aforementioned confidants.

Most importantly, by my side, we have learned that cancer is more than an inconvenience. It will forever be a part of our lives, like the unwanted pest begging for attention. He states that once he figured that out, the disease was much easier to accept for what it is and what it is not.

 
Together, we also learned that cancer cannot destroy everything. For example, we are not just caregiver and patient. We are husband and wife, mommy and daddy. We are a sister and a brother, an uncle and an aunt. We are good friends to many, as well as colleagues. Cancer will never take that away from us.

When I think about Steve as my caregiver, I have pangs of guilt on what our lives might have been, should I have not gotten sick. But then I also think about what cancer has put in our lives that has made us stronger than we have ever been. A whole new meaning to the vow we took on that June day in 1996, “for better or for worse”.



We are blessed. Together, we are unstoppable.

 

 

 

 

Finding Strength

I have been thinking of what to say to everyone as the next phase of my life starts without Marsi.  It is hard to know how to feel.  There are some things I need to say, though I don't know how to express them. I hope this blog entry is not a far cry from the emotions I shared as Marsi was dying and gives you all a glance into the soul of a husband suffering the loss of his wife.  I feel so numb right now and my path forward needs me to get this out.

I have lost Marsi to breast cancer. I did all I could to help her survive. I supported her, comforted her, loved her, and cried with her. I was her punching bag, errand boy, taxi driver, and nurse. I helped her pick doctors, hospitals, surgery’s, and drugs. I didn't leave her when the moments became unbearable. I didn't give up when medicine failed us. I couldn't give up when Hospice was called. I held her when the pain became intolerable. I had to watch my beautiful, strong, amazing wife deteriorate and die, with no way to stop it. I felt so scared. I felt so angry. I was so helpless. Yet people tell me how amazed they were at my strength.

I have thought about this for a few days now and I feel the 'strength' I put forth to survive this long, horrible ordeal, simply came from love.  The boundless love I have for Marsi, as well as her neverending love for me.  Love had given us strength.

I cry. I hurt. I now have a void in my life that I will never be able to fill. Marsi is gone, though I still wait for her to walk through the door, kiss me goodnight, or call my name. The bed feels foriegn without her next to me and the house is too quite without her laughter. She had a brightness about her that made me feel good about myself. I was the lucky one she called husband. So when she was diagnosed with cancer and everyday normalcy was shattered, it was our love for each other that gave us the strength to fight.

Love gave us strength and this strength became courage. We both decided that we must remain positive and live each moment we had left, as we fought this cancer together. Darkness and fear could have easily crept into our lives, but we helped each other through it. For the kids, for the family, for our friends, and for ourselves, we fought through it. Never giving into any negativity or fear that the cancer would win. Marsi still had a life to live and she lived it. She lived it all the way to the end.  She did what she had to do, what the doctors told her to do, and she moved forward.  She enjoyed life and grabed every moment, every second.  Even as her body started to slow down.  I comforted her and stood by her, making sure she wouldn't drown in the darkness and depression that circled her. But honestly, she also did the same for me.

Now, as my angel watches over us from heaven, I still have to be strong and find the strength to move on.  For myself, but more importantly for the children.  Harrison and Madison are fragile now, having lost their mother so young.  This loss will effect them, how could it not.  But with the foundation of love Marsi and I established for this family, our children will be fine.  How could they not be, they have their mothers strength.

Memorial Service for Marsi K. White

Please join us for a memorial service honoring Marsi Kay White on July 28, 2012. 


Location will be:

Foothills United Methodist Church
4031 Avocado Blvd. La Mesa, CA 91941

Services will begin at 11:30 and following, we would like everyone in attendence to join us in celebrating Marsi's wonderful life.  Details will be offered after the ceremony.

Thank you all for your strong voice in supporting Marsi, the kids and I through this fight with Cancer.  I know she will continue to touch us all in some way and her memory will live for many lifetimes. 

God Bless


----Steven

Final Gift

I sit at my computer screen, 42 hours later, thinking.  Thinking about a gift I was given by my dearest Marsi.  It is not a tangable gift, not one to hold and cherish or to look at or share, but one made of pure love by someone with nothing else to give.

Marsi had grown sad these past few months, being unable to help around the house or care for me and the children.  She was scarred of death and how quickly it was approaching.  How everything was being placed on my shoulders to carry the family through.  She would thank me often, for being "The best husband" or "Superdad". I can still her her voice telling me just how much she loves me and how she knows the kids will be OK when the time comes for her to go to heaven.  I blew off these moments, thanking her with a smile or a kiss, thinking only of me and how hard things are and what needed to get done.  Forcing myself to become mechanical and less emotinal, because crying or screaming would not be efficient.  What I missed in this was Marsi slowly releasing herself and entrusting me with the care of her children. That I was a good dad, husband, father, and that her little ones would be fine in my care.  I wish I had talked to her more about this.  Thanked her.  Told her that I will die for them no matter what.  Taking for granted she knew this since I was their father.  Not thinking of a dying mothers worry for the care of her children.  But I will tell her now.  Our children will grow.  They will laugh and not want.  They will become fathers and mothers themselves.  I will make this happen for you my dearest.  And I will be OK. I promise.

It is 4 AM Friday, July 13th. Marsi is now in a drug induced coma.  The pain so great she could not bear reality.  I went to write in Marsi's blog, because I was angry.  Angry because all I could do was mask her pain as she awaited death.  And I felt this was wrong.  This seemed unfair.  So I wrote the blog TIME, thinking about how fast her disease had progressed to bring us to this point where I would rather her go to Heaven, then remain with me on Earth.

At 6:50 AM, I finished the blog and headed down to our bedroom where Marsi awaited me for another round of pain medication.  I climbed into bed next to her, to lay with her and look upon her face.  To steal another moment and enbrace another memory.  But Marsi was gone.  She had died in her sleep.  Taken to heaven while I write in her blog.  I think Marsi whispered the ending to me, knowing it was time for me to let go and her pain to stop.  And now it had.  She is with God.

For the living, it is 7:40 AM and we are in agreement that death was a blessing, but that does not make it any easier.  Tears, grief and sorrow followed that morning.  Hospice came and walked us through the moments until her body was gone and the healing could begin.  No service date has been set, instead we decide to wait and thank the lord that Marsi went quickly and her suffering was at an end.

It is now 10:10 AM and I have just realized Marsi's gift.  A gift to her family, but more so for me.  A gift of release, to have her free of cancer and in no need of any care.  I think she heard me crying and questioning god why she must suffer.  I feel she let go when I layed next to her, so she could free me and allow me to move on.  Her body had failed her and it was her gift to save mine.  She did not want me to worry anymore, to put myself last as I cared for our family.  She knew how it hurt me to see her in pain and how I would do anything to help her through it.  So she gave me her last gift, to free me from my commitment of care and left this Earth, before her suffering would become unbearable. 

With god in heaven she roams now, in a new body and free of pain.  Cancer has been cast out and she is at peace.  I know she is watching over us, making sure we are OK.  Madison, my eight year old, asked me last night if there are good ghosts and if mommy was now one of them.  I replied 'yes' and that from heaven she will always be watching over us, protecting us from anything bad that may come.  Madison smiled and walked into our bedroom where Marsi passed and asked if Harrison and her could sleep with me tonight.  She said she wanted mommy to know we missed her, but that we would be OK.  That if all three of us were together, no bad ghosts could get us, because mommy would protect us from her place in heaven.

----Steven

TIME

I just recieved 4 hours of sleep, because Marsi needs medicine now every four hours, day and night.  I haven't slept more then 12 hours in the past 72, due to the curcumstances of my life right now, but that is OK.  I will take the time later to catch up on my sleep, though my family worries. Time to me now is a luxory and Marsi has so needed me to spend it with her these past few days. 

I think time is a precious gift for each of us to use as we see fit.  It is not infinite for us and it is, by some, expendable, but how should we use our time.  I am told that an average adult needs 8 hours a day of sleep to function normally.  That is a third of our day and that only leaves 16 hours of time in a day to use and enjoy.  So how should we spend our time, when we only have 24 hours in a day, 168 hours in a week, and 672 hours in a month. 

Six hundred seventy two hours ago,  Marsi was still undergoing chemotherapy and had high hopes that the cancer could be managed and a normal life would still be reached.  A new symptom had arrose, where the cancer had spread to her abdominal cavity and draining procedures were started, but overall hope was high and life went on with all the normalcy you muster, living with cancer.

One hundred sixty eight hours ago, Marsi's brother and his family arrived from Portland to spend some time with her. She was so happy, time seemed unlimited, though she was nervous about an upcoming surgery for her catheter and how it would make her feel.

Twenty four hours ago, I remember saying "I love you", as I normally would, everynight, for the past 18 years.  I then closed my eyes to sleep, happy to be next to her, knowing she was safe.  The last thing I remember was Marsi looking at me with that beautiful smile, the one I had seen so many times before, taking it for granted now as a normal close to my day.

A few hours later, time stopped.  It stopped being normal.  It stopped being a friend.  It stopped being wanted.

For lack of a better word, Marsi is now trapped.  Trapped by a body ravaged by cancer and a body too tired to go on.  Her mind is still working and screaming to live, but it can't find a way to comunicate anymore. Her body has failed. 

Marsi awoke a few hours after going to bed.  Eyes wide, mouth open, calling for help.  Nothing could come out, nothing was happening, her body no longer cooperating.  Pain and malfunction is what has taken over, so Hospice and family are now in charge of her, as well as me.  Pain meds are being given to her in liquid form now and Marsi sleeps.  Between pain meds, we get an occational word or sentence. Love is exchanged and tears are plenty, but the pain is too intense for her, so these moments are truly seconds as she drifts away, back into the landscape of her dreams.  My heart hurts now because I so need to keep her close.  To hold her. To watch her breath. To just be with her.  But I must be strong, so my heart is broken, because I know it is time for her to go, needing her to suffer no more.  Now is the time for her go to heaven and I must find a way to survive.

Marsi has always been the stong one, as her battle with cancer has proven.  She would tell you right now not to cry or grieve for her, but to live and hold true to making memories in your life.  Love, kiss, laugh and dance.  Make moments with each other everyday and enjoy the best of your time.

-----Steven

Dancing

Dancing is something we all do in some way.  Be it for fun or be it for competition, we love to watch it and we love to partake.  Be it at a wedding, a school dance, or at home to the radio, we all feel good when we move around and shake what mama gave us!  This is something Marsi and I loved to do.  It brought us together, made us one. I could see the smile on her face as  I would twirl her around and the giggle that escaped as she tryed to catch her feet.  We all have moments like this, a memory of an event where you and your life partner threw caution to the wind and just moved on the dance floor, uncaring of the looks of appreciation or horror that came from the crowd. Just the two of you is all that mattered. A moment created that means so much.

Marsi and I still dance.  With weeks to months left, as told to us by the Oncologist, we still dance.  Unfortunatly it is not the fun carefree type of dance that we would break out at weddings or events that made us laugh and live, but a more subdued dance that has meaning only to us.  When Marsi needs to use the restroom, I carefully pull her out of bed and into my arms.  She is unsteady and fearful of falling, but I know I have her and will lead her.  We walk and shuffle together through the bedroom, in a kind of rhythm, her forward and I back, moving to the restroom at a steady pace, a steady beat.  In a strange way, these moments of dance give me a kind of happiness and warmth as I remember better times with my girl.  I share this with Marsi as a smile, a quick kiss and the words "I love you" are whispered between us. Her smile makes me happy, a moment of magic like old times, and then we are back to reality as I help her sit down once we reach the bathroom.  We still have one more song on the way back to the bed and then she lays down to rest, exhausted from our dance.

To update you all on Marsi's current state, she just had a catheter put in on the left side of her lower belly yesterday. This will allow us to drain the fluid that builds up in her abdominal cavity.  The fluid comes from the cancer that now lines her abdominal wall.  Organs in our body have the ability to drain this fluid if the cancer is on an organ, but when it is on the abdominal wall, there is no natural drainage system available, so the fluid builds up in her abdominal cavity, needing to be drained by long needles or a specially placed catheter.  This obviously is no pinic for Marsi, but as I stated before, she is the strong one.

Today we sign papers, officially placing Marsi on hospice care.  I know this is the best thing for her, but it is still hard to accept or believe.  The kids will not accept that the end is approching and I often find myself questioning and wondering if there is anything else for us to do, to help her fight.  I want the kids to be right.  To find that miricle. To bask in childlike innocents and know mommy will be around forever.  It is all so unfair!  It is all so wrong!  Hospice will help Marsi now on her road to heaven.  Hospice will help the family move forward, as well.

Thank you to everyone who wrote a comment to Marsi and I at the end of the last blog entry.  I do read them and cry, and thank the lord we have such wonderful friends and family.  I have started to read them to Marsi and she loves hearing your kind words and memories.  Today, along with hospice beginning, I hope to video tape Marsi being with the kids and catching her smile a few more times.  She has touched all of us in a positive, wonderful way and know her memory will live on in all of us. 

So next time you dance, look your partner in the eyes, flash them a smile and tell them you love them, because memories can be cherished forever.

----Steven

FIGHT

Fight. To engage in battle or in single combat; attempt to defend oneself against or to subdue, defeat, or destroy an adversary.

Fight to destroy an adversary.

This is what Marsi has been doing against cancer for just under three years.  Fighting to not let cancer destroy her spirit and strength.  Fighting to maintain her time on this earth as a wife, mother, daughter, sister, and woman.  Fighting to slay the dragon, as she would say to me often, as we talked about still growing old together.  My wife Marsi, is a warrior.

I wanted to write in her blog today to update everyone on her condition.  Marsi so loved sharing herself and her battle with breast cancer through this blog that I did not want anyone to be left wondering what happen to her, as she has not been able to continue to write herself. 

The medicine Marsi takes to keep the pain of cancer at bay has taken away her ability to see clearly and type on a keyboard.  The cancer also has continued to grow, spreading across her liver and abdomine, as well as now being more prevalent in the lungs.  Over the years, Chemotherapy seemed to have some affect against this terrible cancer, but with the cancer spreading to the liver and the liver being the organ that filters these harsh chemotherapy drugs from the body, Marsi's liver and body could not keep up the fight anymore.  So today, with the recommendation of Marsi's Oncologist, we are looking into Hospice care.

Comfort and time is so precious to us now.  We now understand that in life, it is the small things that matter the most. Holding her hand as she lays in bed, a quick soft kiss or smile from her beautiful face.  This is my gold.  This is my treasure.  Strength is what she tells me I must have.  Strength for my children, my family, and for myself to not let her passing destroy what we created together.  Strength she tells me to have when she is the strong one.  But I know I will have that strength and the kids and I will survive, because of all our wonderful family and friends.  Family is the rock that gets you through it and friends are what keeps you from going crazy.  To all our family and friends that have been there for Marsi and I, in anyway through this terrible fight, please know that we love you and thank you for everything.

With all this said, please comment and offer support through the comments section of this blog, so I can read them to Marsi and see her smile.  Being positive and keeping the will to fight is everything to me and I need my girl to fight as long as she can.  She is my strength, my love, and my world.  She is my beautiful bride. 



With all my heart, with all my soul, with all I am, I love you Marsi.      ---  Steven

An Update

It has been a long month. And I have sat down to write this several times. The words just have not been there. They fail me. This might be the same reason I have not picked up the phone or that I have not answered email.

Truth be told, I struggle with pain every day. I always thought I was good with pain. I am learning that I am not. I am now working with UCSD's Howell Palliative Care Team to help me manage my medications. I am on Oxycontin every twelve hours and Oxicodone every four hours, so I am happy to have the help. These meds keep me tired most of the time. Every day tasks seem to take extra energy and I am therefore discouraged against completing them. The energy I have one day does not translate well to the next, and so on and so forth. I try to remind myself how good it feels to get out on in the sunshine and do just about anything. Seems like I always feel like going to Target or shopping, but I rarely get out and do these things.

There have been some real nice things happening around me. I went to a Women's Retreat in Julian with my mom a couple of weeks ago. It was so special it is even hard to put into words. Among my favorite parts was me getting a piece of advice from every woman in the room on growing older. I cried a lot. I suppose I needed that. My mom tucked me into bed every night. I suppose I needed that too. It was such a positive experience that I know I will remember the rest of my life.

My daughter was in her first talent show this week. I beamed with pride as I watched her sing on stage with her friend, Grace. Talent show participation was not something I would have even considered when I was her age.

With all that I have had going on, one thing that is not moving forward is chemotherapy. My platelet counts remain too low. Next week is technically my week off and though it is full of doctor's appointments of all types, I am hoping that my platelet counts come up again, so I can have chemo the week after next. Last time around, this did not happen. Maybe I will get lucky this time.

No Good Reason to Post

......Other than I feel like it. Quite a change from recently, when I have had to convince to myself to post. Truth be told, I have not been feeling that well. My stomach has been bothering me and I am not sure why. Mainly, a weird sort of nausea, light pain. They took a bunch of blood from me on Saturday. The tests are not back yet.

I walked the dog twice today - once by myself, once with the family. We are getting to my favorite part of the year where the days are long and the evening hours seem extended. Going for a walk tonight with the family was wonderful. Our dog has been overfed/under exercised for some time now....so two walks for him is great. He needs it. The fresh air was good for all of us.

I am finding myself missing my friends lately. I enjoy reading blog posts by a couple of them. It makes me feel closer to them, at least. My missing them is compounded by the fact that I am not feeling like doing anything about it. Feeling the way that I do is miserable. Eating feels like a chore. I really miss my appetite. I miss food cravings and pigging out on ice cream or pizza. In general, I was telling Steve today that I feel similar to the way I felt when we were in Florida and I was admitted to the hospital. Don't get me wrong, I do not think I need to be admitted to the hospital. I am confident that the blood work submitted is enough. I just feel so crummy. Which is the perfect time for FaceBook and Twitter. They keep me connected to you all and make me smile.

I was also touched by a new connection I made with a distant relative of Steve's. She found me by way of Ancestry.com and my blog. She sent me a very kind email and I look forward to making a new friend.

Other than that, my daughter brought home a marvelous report card. Probably the best I have ever seen from either of my children while in elementary school. My kids were on Spring Break last week and I have to say I enjoyed every moment of it. What great kids I have. So helpful. So genuine. I was really impressed. Is it wrong to be impressed by your own kids and share it with the world? I hope not.

So, I am rambling now. So I will have to cut this post here. Thank you all for listening and being "here" for me. I really appreciate you all.

An Update

In spite of my post from yesterday, today I am proud to say that I took the dog on a short walk and folded a load of laundry! My daughter helped with both. The walk was a short one and the load of laundry was a light one....and now I am exhausted. However, after the tone of my post from yesterday, I felt I owed you all an update as today I was able to "move more". I wish I could say that I knew what caused the change but for now, I am just going to bask in my accomplishments for the day and hope I have enough energy to take the kids to the movies this afternoon.

Thanks for reading my blog, all. It really means the world to me.

No Chemo Again

On Monday, I was not able to have chemotherapy again. My platelet count was too low. I like that I can say "was" because I trust it is on its way back up. How does this affect me? I bruise very easily and have to be careful not to cut myself because my body's ability to clot has been stolen by the chemo. Since I do not move around very much, this is generally not a problem.

Which is another problem in itself: I do not move around very much. I miss having energy. I am currently anemic. Yesterday, when working in my daughter's bedroom, I had an allergy attack, which really turned into what I imagine an asthmatic goes through. My chest felt really heavy and stillness was my only comfort. Luckily, I have a medicine for that too. An inhaler that I keep stashed away in my bathroom drawer for such occasions. It helped some....but my anemic tendencies seemed to win out.

Seems like I have a medicine for everything these days. I wonder what my body would feel like without any drugs in my system sometimes. Generally, I take the most meds in the morning and at night for that is when the nausea bother me the most. Sometimes, during the day, I purposefully do not take anything out of protest and figuring whatever symptom may be bothering me, I can sleep off.

However, this brings me back to the fact that I am not moving much. A couple of weeks ago, I was out to dinner with some friends and one of my friends was speaking about a conversation he had with his doctor about his cholesterol levels. The doctor had told him that the best solution was to "move more". I cannot help but think that this may help me too. Every day, I try to find the motivation to do so. Even if it just means getting up to do the dishes or walking upstairs to check on the kids or folding a load of laundry. "Move more" is a concept I understand, just not able/willing to follow through on. Most the time I am not sure which.

I try not to be too hard on myself, knowing that the fact that I have stage four cancer is a fight that is hard for any physical being. However, from time to time, I wonder if I use it as an excuse. Anyone in their right mind probably would....so I cannot be to hard on myself for that either. Still, as time goes on, I find it hard to distinguish between what is an excuse and my actual physical abilities. Generally not strong enough to do much of anything, my body loses muscle every day. I am pretty sure that my feet have shrunk a half size, my traditionally over-muscular calves seem thinner in my boots and I am just all around smaller. I really enjoy wearing the smaller sizes, mind you. I am just not happy how I got here.

In a recent conversation about him feeling overwhelmed by the amount of work it takes to run our household (which he does most of), I recommended my husband learn to appreciate what he is accomplishing rather letting what he is not accomplishing overwhelm him. It seems like I should heed my own advice. I should celebrate the fact that I helped my daughter sort through her hundreds of stuffed animals and go through a mountain of clothes. And other accomplishments of the like. And accomplishing said tasks does make me feel good. However. truth be told, it is the small chores that I miss. Menial tasks like doing dishes and taking a shower now strike a debate in my head. Do I have the energy now or should I nap first? Or will I have time to nap after? If I eat now, will I still feel nauseous and/or will my dizziness subside? Maybe if I eat now, I will have the energy to shower. Thoughts of the sort are commonplace.

So I know that the fact that I skipped chemo this week help a bit in this debate. I will have more energy. I just hope that my next scan does not reflect my missed chemo. I can only hope.....

April Fool's

Today is April Fool's Day. Though, it does not seem like a day for fooling anyone. In fact, we are in deep, cleaning our daughter's room in preparation for the new furniture we bought yesterday. Mind you, furniture we promised Maddie for her 8th birthday, September 29, 2011. So far, we have no fewer than six trash bags full of stuffed animals and pillows by our front door waiting for a Goodwill run. And more is coming. Hard to believe that much stuff was in her room. Poor girl.

Tomorrow, I will either have chemo or a blood transfusion. I honestly do not know which. Part of me thinks that since I have been feeling better than usual, I will be able to have chemo. Part of me believes that the proven pattern will stay the same and that my platelet count will go down again as will my RBC. Honestly, I think I would rather have chemo.

The last couple of days I have had periods of feeling back to normal but have also faced hours and hours of nausea. The nausea gets me good. It makes it hard for me to even tell when I am hungry and deters me from eating anything heavy. I guess this could be a good thing as I am now back in my size 8 in most clothes. Certainly not my preferred reason for diet....but it sure felt good to buy that two piece bathing suit last week! Now, I just need a tan.

So, as I start this new week. I am feeling a sense of accomplishment. Positive thoughts fill my mind and a joyful peace runs from my head to my tows. It feels so good to know we are finally starting/finishing Madison's room. Having that hanging over our heads made me feel guilty beyond belief. Now, I get to turn to another passion of mine, decorating. Let's hope I have the energy to do so....as my girl certainly deserves it.

Have a great week, all!

Taking a Break from "The Ellen Show"

I am taking a break from "The Ellen Show". It is not really Ellen's fault. There is no way that she could have known the reaction I would have to her show content. In fact, what she did more than likely had a profound impact on the family to which it was aimed. It was a very nice thing to do. As one voice in her television audience though, I was disappointed.

Ellen had an audience member on Monday that was an inspiration. A cancer survivor of a rare type of cancer, she and this woman's children created a "bucket list" of random, spontaneous tasks that as a family, they completed. The cancer survivor explained how the list kept her going when times were tough. She had my complete attention. I listened intently as she explained that completing items such has renting an ice cream truck and handing out ice cream on her birthday was memorable and rewarding. Driving through a drive through to order french fries was a highlight. Meeting President Obama ranked top of the list.

I was inspired. I wanted to make my own bucket list. The woman's smile gave me hope. If she can do it, so can I. I thought about how I have a rare type of cancer (stage 4) and do not know how much time I have but that maybe I should be more like this woman and make the best of it.

After watching the rest of the story, I was saddened to learn that this woman's time had expired. What? My heart sank. And then I got mad. Knowing the end, why would Ellen put that on her show? I realize it was done as a tribute to someone Ellen truly admired and she would have no way of knowing how it would make another cancer survivor feel. Not that I can speak for all cancer survivors'.

I always thought of "The Ellen Show" as "safe". Watching day after day, sometimes it was the only time of day that I smiled or laughed out loud. When I watch her show, I want the energy to dance. I do not have it...but I actually want it. For those who have not battled this disease, wanting to dance is half the battle. Heck, I do not want to eat half of the time.

So what do I do now? Take a break. Watch "Dr. Phil". Though, I am not quite sure how long I will be able to take some of the dark topics that he discusses on his show.

Ellen, I am disappointed. This entry is my best effort at dealing with my feelings. And trust me when I say I am not really mad.....I just took one step forward....and ten steps back. I think. Maybe that is a bit too dramatic. I am still here. My cancer is still shrinking. I still have hope. I am the lucky one. I just need to take break from watching "The Ellen Show" for a little while.

"Scan Results Moving in the Right Direction!"

"Your scan results are moving in the right direction!", says Dr. Boles to me on Friday night. I was getting ready to attend the opera with my mom when Dr. Boles called and now I felt like celebrating. Actually seeing Dr. Boles yesterday, we learned that it seems that many of my tumors have shrunk by as much as one centimeter. There is one tumor in my lung that has grown a bit, but because of the number of tumors I have, Dr. Boles was not too concerned by one tumor growing. CHEMO IS WORKING! Despite, my inconsistency in being able to complete my treatments.

I did have chemo yesterday, however. Once the steroid kicked in, I was wired. I felt the best I have felt in ages. I was wired. It did not help my sleep last night, mind you. In the end, it was worth it. I have learned to appreciate special moments where I do feel good. Even if I am attached to an I.V. pole. My mom and I had fun joking around and watching Pawn Stars on the History Channel.

Today, I do not feel so hot. My chemo dose was lowered. However, this is my third time receiving this chemo and treatments are cumulative. I do not anticipate feeling good for at least the rest of the week.

On another note, my son has walking pneumonia. He is sitting on the couch next to me as I type this. It is kind of nice to have company, although I can barely take care of myself. Steve has promised to come home early today. I can make it until then. I better go get him some cough medicine now.

CT Scans Today

Today, I had CT scans of everything from my neck to my belly button. It was pretty much uneventful, though they were unable to use my port because they did not have documentation of my port's type. They started an IV instead. So, back I go to Kaiser to obtain some sort of documentation. I hope it is something that UCSD can indicate in my chart and not something that I have to carry with me.
Scan results come Monday at my doctor's appointment with Dr. Boles. I have some pain that I am concerned about, praying it is not indicative of disease progression. I am hopeful but do not have my hopes up due to the location of said pain.

Other than that, I had a nice day today. I spent some time out in the sunshine, lunching at the Western Barbecue with Madison. It put me in a really nice frame mind, a much needed diversion after my scans of the morning. Tomorrow, I am going to an early movie with my cousin and to the opera with my mom. The Opera is a comedy, Don Pasquale. I am really looking forward to time with my mom and the opera looks fantastic. More diversions that are much needed as I await scan results.

Upcoming Scans and A Golf Tournament

The golf tournament was this past weekend. It was amazing. More than 200 people showed up to dinner. It raised more than $20,000 net. We are honored and overwhelmed. And donations continue to trickle in. Beyond the fundraising, the love in the room warmed my heart and gives me strength. It is really hard to explain, but this event could have passed for our wedding. People from all arenas of our lives in one beautifully decorated room. Hugs were abound and even a few tears, we felt like we won the lottery, in more ways than one.

So, on Monday, I went to Moores Cancer Care Center with the expectation of receiving chemotherapy only to find out that my platelet count was still too low. We also had an appointment with my doctor where we decided that I would have scans this week to make sure the chemo is working. Chemo just takes so much out of me that we felt it might be worth it to complete the scans before going through another round of the debilitating process. The scan is tomorrow morning.

A good piece of news; my liver chemistry panels are showing improvement. Normal range is 40-135. Mine was 810 in January. On Monday, it was 310. So maybe the chemo is working?

On the flip side, I am having more pain than usual. I think what I thought was nausea is actually pain in my stomach. My right side hurts from my liver and under my arm from the irritated lymph node on my right side. For these reasons, the scans make me nervous. But at least we will know.

And when we do...you better bet I am going to draw from the strength I gained through the golf tournament. See how that works?

Roller Coaster

This morning I could not even get out of bed to see my kids off to school. A new low.

Ten minutes later, friends were at my door to remind me how much fun we used to have together. Organized the week before, I actually had forgotten that morning, excited as I was to see the girls. Lack of sleep from the night before had overpowered any planned schedule memorized in my head for that day.

The girls left and I went back to sleep. It is the perfect pajama day. The skies are grey; the air outside is cold. I forgot to take my pills or do anything to take care of myself until 11:30. It was almost like I was asleep all morning until then. I got myself some lunch and texted my brother to see if he and Kelly were bringing Jed over for a visit.

They did and I enjoyed their visit very much. Jed, now 13 lbs., smiled at me when I played with him. At three months, he is just starting to grab toys and put them in his mouth. He is "talking" a lot too. Every moment I spend with him is a gift. Every moment I spend with Darin and Kelly is a gift. They go back to Portland on Monday. The thought of them leaving makes me sad but the fact that they visited for such an extended period is truly special.

So now, I am alone again awaiting Madison's return from school. Her smile will brighten the room. Her laugh will make my heart skip a beat. My tiredness will diminish. Steve and Harrison will be home shortly as well. Darin and Kelly may return tonight to eat dinner with us. I hope they do.

Looking forward to the golf tournament this weekend. So much love is being put into its planning and from those who are attending. I am both honored and overwhelmed. Mostly honored. It is sure to be a high point on my weekly emotional roller coaster. 

Special Day, Special Friends and a Golf Tournament

Today is my last official day as an employee of Rady Children's. I am trying not to be overly emotional about it. It helps that I had visitors this morning and that I got my laptop back today. It also helps that some very special friends are putting on a golf tournament in my honor on March 10. You see, now that I am not working, I can no longer accept Disability Payments from the State of California. I must now apply for Social Security Disability. I have been told that it can take up to a year to actually start receiving these payments. So what do we do in the meantime? That is a good question. Luckily, my parents have offered to supplement our income and Steve's family is helping a bit too. Plain and simple, especially considering my increased medical expenses, this household can't run on a teacher's salary alone.

This is where the golf tournament comes in too. Especially since it is not tax deductible, I am truly honored by the number of donations that we have received. Many from people we do not even know. I am even more honored by the work of the tournament committee who are sacrificing time out of their already busy schedules to get this done. I feel loved.

On the health front, I had a blood transfusion on Monday to relieve me from anemia. I feel so much better. I no longer get winded walking around my house, there is pep in my voice and I even did some laundry yesterday. The other side, however, is that I have not been able to have chemo for the past two weeks because my platelet count is dangerously low. Dr. Boles says not to worry and that my blood chemistry appears to show that my liver is functioning a little better than it was before. This is very good news. So, my goal is to have chemo February 13. It will undoubtedly wipe all of my counts out again, bring back my anemia and make me sick. I can handle it, if I know it is working.

All in all, I am really looking forward to the golf tournament, where I will speak and participate where I can. Please check it out using this link, if nothing else just to admire the good work my friends are doing. I take great pride in these friends. They are loved more than they know.

My Road to Depression

This morning I awoke with words floating through my head and I guessed it was about time I write in my blog. My laptop is still under construction; So, I am struggling through with Steve's. The keys feel foreign to me and I am not sure it it is because it is 4:30 in the morning or because the keys seem to sit slightly on the left than where they do on my lap top. Either way, I am struggling.

For those who have not already guessed, I have also been struggling with depression as of late. I think it all started when I broke down and told my mom that I should not be going on our DisneyWorld trip, guessing that I was too weak. I was, but I also knew that a lot of people had put a lot of energy into the trip, Even more than that, I wanted this trip for my kids. I wanted them to be carefree, for me and Steve to be reminded what that felt like and to make those memories. I had it all built up in my head and felt trapped. I was going.

Carefree did not happen. I ended up in the hospital for three days upon our arrival. Extremely dehydrated, with a possible intestinal blockage. While in the hospital, I was told I was crazy and given a brain CT to make sure my cancer had not spread. It was a bad experience, but yet it was needed, as I was discharged hydrated and functioning.

The rest of the trip proceeded, but I still found myself weak and unnerved to be in a wheelchair. Granted, it was needed. We saw Harry Potter World and I rested in First Aid for three hours while Steve and the kids went and drenched themselves on this ride or the other. Steve and the kids went to DisneyWorld the next day without me, we rested the day after and went to Epcot Center for the last day. We did have a lovely time at Epcot and I did not even have to rest in First Aid.

Upon return from our trip, doctor's appointments and chemo awaited. I was exhausted, but also knew that chemo had waited long enough. This particular chemo caused horrible nausea. I was not holding food down or only in very small doses. As I recovered and I am really still working on it, this is where the depression really started to hit. And I did not have too far to fall. I always try to remind myself that I did not ask to be a stage four cancer patient. I cannot blame myself for what my family goes through with me. Easier said than done.

Still, I have not want to do anything, respond to anything,or even get off my couch. It is a strange feeling for me that I am learning to deal with. I am getting help now. And I do not want all to think this an open invitation to call and check on me. I would rather not answer. Right now, I just need my time to process. And I will. And that will be that.