two men, one woman, one young mom and the importance of support

Since my stem cell transplant I no longer produce an important antibody, the one that fights off viruses.  So every 6 to 8 weeks I go into my oncologist for a “boost”.  The Wikipedia says, “IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities.”

Today has proven to be a very social day here.  Our infusion room is rather small, seven reclining  chairs.  As I was prepared for my infusion, I overheard two men talking about Salt Lake City.  (Living in Kalispell, Montana, when I hear patients or survivors talk about Salt Lake City I tune in.)  When there was a pause in their conversation, I asked them if they were treated at Huntsman Cancer Hosiptal.  They both were in 2009 for multiple myeloma.  One gentleman was in remission and the other has relasped.

We shared our stories and exchanged our experiences at Huntsman.  Our clinics were right next door to each other and the Bone Marrow Unit was actually a part of the multiple myeloma clinic.  I heard doctor names that I was familiar with as well as places and wings in the hospital.

M, who relapsed, said he is a custom log home builder, owning his own company.  He is also an avid outdoorsman.

During one of his stays in the hospital in Salt Lake City, he said he was rather down and negative about his diagnose with cancer.  One day when he stood in the walkway bridge between the cancer hospital and the university hospital he admired the beautiful Wasatch Mountain range east of Salt Lake City.  As M stared at their grandeur, he made the decision he was going to beat this beast and promised himself when he was well he would go hiking and recreate in the mountains again.

Huntsman Cancer Hospital, Salt Lake City, UT, the Wasatch Mountains in the background

I shared with M that those mountains also inspired me. I told him about my experience of feeling blue and wondering if God really did care about me. (You can click here to read, “Does God really care about me?”)  I told him after looking out at those mountains, I, too, was filled with a sense of how big God is and if He could create those mountains, He certainly could take care of me.

What inspires you as a patient, survivor or caregiver?  When it seems that the rope is getting awful thin and perhaps even unraveling, what or who do you turn to for strength and support?

A base of support is a tremendous source of strength and encouragement.  If you have some sort of foundational support it is surprising how fast the base broadens, it reaches out to places and persons you have lost touch with or don’t even know.  People from all over rally around you, I was blessed beyond words and I will never be able to explain to them how their care and concern inspired me to hang in there.  But even greater, my support base had people who believed in prayer and the power of prayer and I can testify that when I called on them to pray for me, the calm and peace and strength to endure returned.

If you are a reader and not a patient or survivor, you do not realize how important you are in the life of a cancer patient!  M and I agreed that people are important.  If you think your note or email or text might be received at the wrong time or circumstance, it will probably be received at just the right moment!  I had many of those moments and I can’t tell you what they did for me!

After M left, a woman walked in for a blood draw.  My back is to the area where the nurses take blood.  The nurse was telling the patient her port was plugged and she couldn’t draw blood, she recommended this woman, J, to go to the infusion room where the pic nurses are adept at correcting kinks and plugs in the line.  When I heard the name “J”, I turned around to see if this was the J I talked to about stem cell transplants three months ago and she was.  I was so happy to see her, I was wondering if she ever did get her transplant.

J is presently in chemotherapy prepping for the autologous stem cell transplant.  Next Tuesday she is to be admitted for her transplant in another city far from here.  I was glad to see her but our conversation was cut short because the infusion room was waiting for her.

I wonder if J has the support she needs so far away from home, I hope she won’t feel alone as she goes through her transplant process.  This winter I mentored another transplant patient who was  alone.  I can’t image going through chemotherapy let alone a transplant with no one there to listen to you, talk to you, cry with you, encourage you.

If you are the friend or follower of someone with cancer, write, write, write!!  You will bless beyond your knowing!  Don’t be afraid, you are not a nuisance or an annoyance – you are a blesser and support!

I encourage the patient and caregiver to let everyone know when you need prayer!  I kept a CaringBridge journal all through my treatment and transplant and beyond.  The journal was my source of receiving encouraging words and notes as well as letting me alert my followers I needed prayer.  It was an amazing way to communicate!

If you are a patient, caregiver, friend or reader and know of someone who has cancer and very little if any support foundation, adopt them.  Ask if you may occasionally call or if they have an email address could you write them.  Cancer is a very lonely disease.  That is crazy to say because all of you can probably name ten people either first hand, second hand or third hand who has cancer.  Even if the patient seems to have a sufficient base, still there are moments of loneliness, and one email may be what the patient needs; cards are welcomed, too.

This could be an individual ministry or perfect for a  small group outreach.  It is pretty simple too, the written word, a spoken word, a listening ear and a shoulder to cry on, a visit to the infusion room or the hospital room.  And best of all, we can pray for them.  You’ll find when people are in crisis they gladly accept prayer.

As I was packing up my computer this early evening, there was one patient left receiving her last bag of chemotherapy.  She was a young woman and her mom and dad were there as her support.  I overheard that she had little children and I think one is still in diapers.  I thought she had breast cancer because both she and her mom were wearing pink shirts, sweatshirts and socks so I wrote on back of one of my flyers the name of a breast cancer blog about a young mom with young children, Praise You In This Storm.  I told her I assumed she had breast cancer and she said no, she had colon cancer.  Pink sure has us indoctrinated!!

I left for a moment and came back to tell her there are two other blogs written by young moms with cancer on my blog’s side bar.  She told me her husband works for the railroad and is often away days at a time.  Can you imagine?  First, so young and has colon cancer and two, her husband is away.  And then her mom said that her daughter is well supported by their church.  We agreed that the church plays an important role for anyone going through a traumatic event.  I invited them to our cancer support group and then I left for home.

What a day!

really? cancer and laughter . . .

First things first . . . this week I had my four year post diagnose check up (April 27, 2008 diagnosed with mantle cell lymphoma).  I remain  cancer free!  The CT scan showed all is quiet and normal, my blood tests normal (my red blood count is slightly low but it has been ever since my transplant, so I guess this is “normal” for me.)  I was concerned about a “fullness” bump under my ear but the CT scan showed this is probably scar tissue from my initial cancer.  So I am – – – cancer free!  As I posted February 25, 2012, unbelievable!

The most trying time in my life, diagnosed with mantle cell lymphoma.  My treatment protocol was a very rigorous and aggressive chemotherapy including an autologous stem cell transplant.  I never thought the day would come that four years ago is, well, past . . . a distancing memory.  As I left my doctor’s office on Monday, I told Dr. Goodman that this appointment is unbelievable.  (It is a difficult emotion to define, maybe I’ll write about this at a later date.)  Then I was so sick and now I am so well!

Cancer isn’t a laughing matter.  Having cancer is very trying to the patient and to the caregiver.  On an emotional scale from one to ten, you can experience one to ten and back, and possibly dip into the negative number scale, too, all on the same day!

But today I want to focus on the lighter side of cancer – yes, there can be a lighter side, maybe not all the time but an occasional moment here and there.

One of my lighter sides of cancer happened in the fall.  I started my chemo in May, I was treated all through summer and the fall was my march towards my stem cell transplant.  During a day of appointments and testings at the hospital my husband and I had a few hours break at lunch.  We packed a picnic and went to Red Butte Gardens.  We sat on the steps outside of the entry and enjoyed the warmth of the autumn sun.  The view was outstanding overlooking Salt Lake City, it was quiet and a moment to catch our sanity before returning for more appointments.

A school bus pulled around in the parking lot to unload the occupants at the steps where we were sitting.  The occupants happened to be an elementary school on a field trip to the gardens.  On exiting the bus, the teachers and chaperones kept “shhhooshing” the kids while they hustled them into an organized line.  As the kids walked past us and up the stairs they were very quiet and oddly, they kept staring at us.  I wondered why we seemed to be a peculiar sight.  Then it dawned on me, I didn’t cover my bald head!  I was a bald woman, a sight these kids didn’t see ever day!  And we had a good laugh at the thought of a bald me and a bus load of elementary school students.

Laughter and light moments during a time of crisis – laughter is good for the soul.  For a moment laughter brings a reprieve from the seriousness of diagnose, doctors, pokings and prodings, tests and tests and tests, victories and setbacks, appointments and doctor’s reports.

I would love to write more stories about laughter during (and perhaps through) a time of trial and testing and persevering.  Do you have a story I could share in this blog?  Your story may be the hope one person needs to read in order to get through to the next day – maybe the next hour.  Please share your story with me and give me permission to rewrite it in a future post.  If you have a picture to go along with your story, you could send it to me via email, advocateofhope@gmail.com.

You can either contact me through the The Voice comment box above or send me an email.  Would you be willing to do this for another who might need a light moment right now?

A light moment!  Cyndi

The Land World, the Ocean World or the “Some Where” Shore, by cyndi

“I am available.”  That is my prayer, I am available.

I don’t know how far-reaching F.A.I.T.H.  will go.  I don’t know how or who might receive my flyers, I don’t know if we’ll ever meet face to face.  I do know this blog can be shared and forwarded to hundreds of people, some who may personally benefit from the information shared here and others who are wondering how to relate to a loved one or friend who has cancer.  I had two women thank me for this site because it helped give them insight in understanding in how to support those who have cancer.

I recently handed out flyers at two women’s Bible studies.  I introduced myself and asked the question how many women attending the study knows of someone with cancer or personally has had/has cancer.  There was a low groan and every hand raised.  A male friend of mine mentioned to me at his men’s Bible study their prayer list has over 54 names of those with cancer to pray for.  We all know someone with cancer; stop for a moment and count how many people you know with cancer, you’ll probably be shocked.

Cancer is a world of its own.  It is life changing, it has its own schedule, the patient and caregiver are at the discretion of the medical team, it is unpredictable, it is wearying, it is mental, emotional, physical and spiritual in every way.

Today I corresponded with a caregiver.  The caregiver recently started her role in supporting and coming alongside her loved one.  She said it feels like it has already been forever and  “I just feel I’m living in this different world right now.  All you can think about is . . .” and she proceeds to name her new “duties.”

Four years ago I distinctly remember talking with my parents about all the people on their street who had cancer; we were astounded.  My feelings were “I’m glad its them and not me” and felt removed and a bit indifferent.  But I was always saddened to hear “another” person was diagnosed with cancer.  Just months later I was on the other side of the fence, I was diagnosed with cancer – and my world changed.

One day while in treatment I thought about the two worlds I lived in; one, without cancer and the other, with cancer.

The world prior to cancer was like I was standing on the seashore looking at the vast ocean.  I thought about how the water starts out shallow and then plunges into a world all its own and this world went on for thousands of miles to the other “some where” shore.

In this ocean world life was so very different than the land world.  In reality I couldn’t even begin to comprehend what the ocean world was like with all of the sea life including vegetation, cliffs and canyons, reefs and mountains.  From watching T.V. documentaries I was familiar with the variety of fish and dolphin and whales, coral and seaweed but over all, this was a vague world to me.

The ocean world is like the cancer world to many of us, vague yet vast in size.  It is hard to comprehend if you are not directly involved.

I hope to help caregivers and family and friends in how they can support and encourage the one they are concerned for.  For me the best support and encouragement I received were all of the prayers offered on my behalf  followed by email notes and notes in my guest book on my CaringBridge site.  I looked forward to reading those notes daily as they buoyed me up and helped me along to face another day.  I will write more later on how you can be the best medicine for your loved one or friend, even stranger as I had people I didn’t even know write me and that was wonderful.

I started another link menu called, “Words from experience . . .”  Under this link category will be articles, blogs and videos from Christians who have traveled this cancer road.  Today I posted Pastor Matt Chandler’s account of his brain cancer diagnosed in 2009.  After having listened to the video, Matt assured me that life is tentative yet soundly rests in the hand of a sovereign God.  The following is a link to an article interview written one year after diagnose:

http://thegospelcoalition.org/blogs/justintaylor/2010/11/01/one-year-later-an-interview-with-matt-chandler/

So please consider who you might send my blog site to and then encourage them to send it on to someone they know.  This cyber world (another world!) is amazing as it allows us to connect in so many ways.  May this blog be a connection to those who need to read about and listen to those who are either in the ocean world or made it to the “some where” shore!