I am a mantle cell lymphoma survivor

I walked out of my oncologist’s office today thinking, “How can my normals get any more normaler?”

Another four month appointment has passed.  Today at 10:30 a.m. I signed in at Dr. Goodman’s office for another “follow up” appointment.   I am feeling so well nowadays that I didn’t expect any surprises – like in relapse, you know.

First, I stood on that weight scale that did me no good my last visit.  This time I was dressed in summer clothing rather than heavy winter clothing, I am exercising regularly and I am often out in our yard gardening.  Mind you, my gardening isn’t just plucking dead flowers off the stem,  I am really laboring; I trim my flower gardens, fix sprinklers, dig holes, and so on.  This time I won on the scale!!  I lost a few pounds!!  Phew.

Then I met with Dawn, Dr. Goodman’s assistant.  We had the usual welcoming chatter and then she went on to tell my all my blood work looks good.  At this point in my cancer adventure, my blood work is what is the first indicator if all is well or not.  My CBC (complete blood count) was as normal as it can get for me.  Next Dawn said that my full blood work up showed all is well.  Of course, and to be expected, my IgG’s are in the toilet (IgG’s are viral fighting anti-bodies that my body no longer produces since my auto stem cell transplant) so I am scheduled for an infusion replenishing IgG’s in order to get a jump on the oncoming cold and flu season.

After Dawn palpably worked over my body, I asked her what part of the blood test are my marker indicators.  She said in MCL the LDH and Beta-2 Microglobulin are the two blood markers for any changes with my type of cancer.  Both are in the normal range.   Another indicator found on the CBC is the percentage of lymphocytes in my blood.  I write all this because I really never knew what my docs looked for.  I knew a CT and/or PET/CT scan shows cancer activity but that is done once a year.  So for the in between times,  my blood is drawn every four months or so to track any changes.  And, of course, any physical changes on my body are another indicator that something is up.  So between the regular blood draws and me noticing any physical changes,  that is how I can tell if something is off.

Mantle cell lymphoma is an odd and unpredictable cancer.  There is so much research being done  in MCL.  The information is a bit confusing to me.  Some world-renowned doctors specializing in MCL say this cancer can be cured, especially with the new forms of treatment (newer than my type of treatment).  Other docs say it is incurable and it is a matter of time before MCL rears its ugly head again.  So with this contradictory information I must keep on pushing forward and stand very uprightly in the fact I remain cancer free.  If I was to live by the back and forth debate the world-renowned docs’ research papers claim then I would be a wreck.

So in not waiting for an agreed upon consensus in the matter of whether MCL is curable or not, I will live my life with great joy and expectation!  I don’t sense a soon to be adieu, or even a later adieu, so I plan my life accordingly.

It is worth every penny to attend my nieces’ weddings, it is worth hiking to places I’ve never been before and paying the physical exertion price the next day; I keep planting more and more flowers in my gardens and I enjoy the presence of my two adult children joining us for dinner.  I look forward to camping and touring more of Montana and I want to plan a trip to Hawaii.  I also want to see more of the world.  I have a crazy idea of visiting Africa and the Antarctic.  I want to fly fish better (will I ever?).  I want to visit my daughter in Pennsylvania, too, especially in the fall in order to travel northward to see the beautiful fall  colors.  There is so much to do and life is too short to stay at home saving all our pennies for later in life.  (Yes, there is some financial  responsibility we must prepare for.)  And I want to see my girlfriends more often, like in an annual girls weekend.  I also want to see my cousins more often,  maybe meet at some wonderful, spa-like destination.  Oh, and I would love to ski faster and go down steeper terrain and learn how to ski powder.

I love my normal reports, I really do.

Trust and Peace in the midst of uncertainty ~ is it okay to cry?

As a Christian it is okay to have feelings!  It is okay to feel!  You don’t have to appear strong when you feel that the floor is falling out from under you.  You can cry, you can be afraid.  You can slam your fist on the desk, you can scream.  After all, didn’t Jesus have feelings?

We were driving north on S 300 W or was it S West Temple in downtown Salt Lake City?  I think it was in September because I just went through all my testing prior to my stem cell transplant.  We were hoping that my test results would be the approval to move forward into the most anxious phase of my treatment.

My cell phone rang.  Dr. Greg Pollack was calling to report the findings to one of the tests.  The PET/CT scan showed I had possible “residual” cancer in my psoas lymph nodes.  There was some doubt as to whether or not it was residual cancer as the scan detected dimly “lit up” lymph nodes.  But all the same, Dr. Greg said he and the team agreed that further treatment was necessary before I went for my autologous stem cell transplant.

I felt this sinking feeling and was devastated as Dr. Greg went on explaining the options that the team discussed and were available to me.  It was all confusing information.  But I took the news; I held on to it, I sifted through it and went on with treatment.  What else could I do?

Three years, nine months later, the floor fell through.  I finally allowed myself to feel the fear I felt that day when I was told, “Unfortunately, you are not 100% responsive to chemotherapy and the scan shows residual cancer.”  Three years, nine months later I remember feeling as if I was backed into a corner by a monster that wanted to kill me.  I felt defeated.  I was afraid but I buried my emotions, namely fear.

As Christians, when we are faced with a crisis how should we respond?  Is there a correct way?  Am I to respond in the “strength of the Lord” and stoically move on?  It sure helps all those around me. If I don’t show my fear then they won’t be fearful, they are comforted by my strength.

God was good in helping me be strong.  I trusted in Him and in that, I trusted my medical team’s decisions in proceeding with further treatment.  I did not let fear dominate, I did not panic and moved forward.  This was a set back, there was nothing I could do but follow directions.

But I wonder if I allowed myself to feel emotions all through my cancer, would my psychological recovery have been easier?  Different?  Faster?  I did trust God and God did grant me that “peace that surpasses our understanding” all through my illness.  In being blessed with those gifts I was able to cope in the time of crisis.  But now I do believe that we can have trust and peace and the freedom to express our emotions as emotions do cleanse our soul and maybe I would have been healthier by that continual washing.

Trust and Peace

“Do not let your hearts be troubled.  Trust in God; trust also in me.”  (Jn. 14:1)

Jesus was telling his disciples He was going away.  The disciples loved Him and this news was confusing and maybe for some distressing.  Jesus wanted to assure them that it is better that He goes away so that they can do even greater things than He did while He was on earth, “And I will do whatever you ask in my name, so that the Son may bring glory to the Father.” (v. 13)  Glory to the Father.

“But the Comforter, the Holy Spirit, whom the Father will send  in my name, will teach you all things and will remind you of everything I have said to you.”  Glory to the Father . . . the Comforter will remind me just as He did with the disciples to trust in Him who went away.

“Peace I leave with you; my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid.”  (v. 27)  Glory to the Father . . . the Comforter will remind me  . . . trust and peace.

This peace is other worldly.  John Piper refers to this peace as “the new world order.”  Is this the peace of the new heaven and the new earth?  Piper says no, that is not what Jesus is focusing in on.  “‘Let not your heart be troubled.  Neither let it be afraid.’  He has in view your heart, and the peace of your heart, and the fearlessness of your heart, and the untroubled waters of your heart.  He wants his people now,  to be free from anxiety.”

Do not let your hearts be troubled . .  trust . . Glory to the Father . . the Comforter will remind me . . peace . . Do not let you hearts be troubled.

“And he knows that the only kind of heart-peace the world can give is peace of mind based on good circumstances.  If the world can take away our troubles – through health insurance, big savings accounts, the best oncologist in the nation,  top research hospital, drugs and aggressive treatment – then the world can give some peace of mind.’  (italicized are my words)

“But Jesus says, ‘Not as the world gives do I give to you.’  Which means that his peace is not based on good circumstances.  It is given, and it holds sway, in spite of bad circumstances.  Here is how Jesus says it in John 16:33, ‘I have said these things to you, that in me you may have peace.  In the world you will have tribulation.  But take heart in that tribulation; I have overcome  the world.'”

His peace, not ours, is foundationally sure, it is immovable and irrevocable.  It is there, it is true and it is everlasting.  And nothing – nobody – will be able to take it from you.  The waters of fear and anxiety may wash over you but the foundation of peace will not give way under your feet.

Emotions

As we trust we are assured of peace but this doesn’t mean we are emotionless in the midst of trials and testings.  Feeling emotion doesn’t mean we show any less glory to the Father nor does it mean that the Comforter hasn’t come to dwell in us, we are no less a Christian feeling and exposing our emotion.

Jesus had feelings and He wasn’t afraid to show them to his friends and those around him

• love – Mt 19:13-15, Jn 11:3, 36, 38
• wept – Jn 11:35, Lk 19:41
• anger – Mk 11:15
• sorrowful and troubled – Mt 26:38
• sense of abandonment – Mk 15:34

So it is okay to feel.  We should all feel and in our feeling and expressing that feeling the Father is all the more glorified because we are turning ourselves over to the Comforter and allowing Him to do the work He was sent here to do.  The Comforter brings to our soul the promised peace that does indeed transcend our human understanding and this, my friend, is to the glory of the Father!

cancer does not silence us! the harmony of our songs . . .

In my last posting I wrote that I “do not lightly” follow the Christian cancer blogs I have come across in my research.  I read them, I comment on them, I try to bring hope, support and encouragement in their cancer journeys.  I am invested in them.  Is this good?  Is this bad?  When I write, “I am invested in them”, I am emotionally involved with these people.

Yesterday my email inbox filled with notifications that many of the blogs I follow have a new posting.  My first response is I am thrilled they have updated!  My second response, I hope all is well!

I was delighted to hear from emilyannelove’s aunt, Auntie Plum.  She is the author of little  Emily’s blog.  Emily has childhood leukemia.  Emily has just returned from a two week hiatus from her treatment.  She was not recovering well and rebounding from her chemotherapy as nicely as her medical team had hoped so they gave her (and her parents) time off.  Emily responded well!  Praise God!  Now she is heading back into her treatments and Auntie Plum is asking for our prayers, “Please join us in praise for the improvements in Emily’s spirits, mobility, and physical well-being. Please keep praying for an increased appetite and an overall improvement in her blood work, as evidence that the treatment is working to fight the Leukemia in her body.”

But I must say, the post that Auntie Plum wrote on April 21, 2012, “Special Beads for a Special Girl”, just blessed me!  Tell us, Auntie Plum, how can we send Emily a special bead for her necklace of courage?

Pastor Bob Jennings, who has pancreatic cancer, updated his blog, Bob Jennings Journal, too.  I was happy to read that he was able to walk his daughter down the aisle on her wedding day.  I am sure the family rejoiced as God continues to walk Pastor Jennings through this valley and in His mighty love and grace, gave to the family this treasured memory on this special day.

Pastor Jennings blessed me in his willingness to discuss the raw experience in having terminal cancer, “I lived my life for you, Lord . . . I did what I could.” Pastor Bob Jennings”.  His most recent post he compares birth to death, “Meditation:  Ecclesiastes 7:1b  … the day of one’s death is better than the day of one’s birth.  What!  How can this be?  It is true for the Christian, and only for him.  Here are some reasons why it is better…”  Again, Bob leaves me humbled . . .

“Thrilled to Death: Paul Pavao’s Leukemia Blog”, Paul writes about his after thoughts from his newly ended chemotherapy and allogeneic stem cell transplant.  Paul really was “thrilled to death” not necessarily about his diagnose but that this might be used to God’s glory.  Paul writes the pros and cons to having leukemia and now that he is post treatment, he rethinks what he initially wrote in regards to the pros and cons of having cancer.  I am delighted he is doing so well!

Tamara is in the midst of her journey with chronic lymphocytic leukemia, or CLL.  She is post “allo” stem cell transplant by 20 days and shares with us daily of her day by day, sometimes, hour by hour, recovery.  “Our Journey” educated me on the difference between our blood cancers and how leukemia may be more “curable”, the treatment seems to be more extreme.  An autologous stem cell transplant seems like a walk in the park compared to an allo!  Both Paul and Tamara face the possibility of Graft versus Host Disease, which in itself can be very unpleasant.

Lastly, through my blogging I have a new friend (but aren’t all these people my friends?), Elaine Olsen, a new breast cancer survivor, and author of “Peace for the Journey”.  She is an inspiring writer and I am challenged by her gift and because of her, I aspire to become better in my skill of communicating through the “pen”.

She recently wrote a lovely article, “Rediscovering Your Song . . .”

“Being a survivor isn’t about defeating the cancer. Being a survivor is about defeating the silence . . . . But here is the truth of the eternal song. Once the music has made its way into a heart, no amount of throwing and crying and denying its pulse can keep it buried forever. We can go to the grave refusing it a voice, but in the end, the music remains. It will find its chorus, even without our participation, because the King’s music is meant to be sung.”

I am pleased to write that Elaine gave me permission to post this inspiring article on my blog.  It is my prayer that our songs, little emilyannelove, Pastor Bob Jennings, Paul and Tamara, as well as my song will not be defeated by cancer but we will feel the elation and hope to rejoice in that melody God placed in each and every one of our hearts!  Cancer does not silence us! and in heaven our songs merge into one chorus that brings praise and adulation to our King!

“Rediscovering Your Song . . .” follows . . .

addendum:  If anyone is interested in sending little emilyannelove a bead for her necklace of courage from your area of the world, please contact me via “Your voice . . . contact me”  (found above).