SPEP – M-Spike Values from January 16 2012

When I went to my appointment at the Salmon River Oncology today, they had my SPEP and M-Spike values from January 16 2012 which I thought they did not order. My M-Spike is at 0.15 on January 16 2012 and it was 0.10 on 1 December 2011. They drew the SPEP and M-Spike again today, February 27 2012, but I will not have the results until next week.


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Have I told you?

I began this blog as a way to release the fear that seemed to seep from every part of my body after I learned that my honey had Multiple Myeloma.  It has often become my way to lighten the read, and the journey, by retelling the sometimes humorous antics that can occur with us. I often add medical data, notes and photos, as they’ve applied to my honey, whenever I feel that other MM patients, or their caregivers, may benefit from the information. Very seldom, if ever, do I delve deep into the medical field. I leave that to those who have been around this cancer longer than I, and are more knowledgeable bloggers like Margaret’s Corner or Pat Killingsworth, or the MM Specialist like Dr. James Berenson, and so many others.

Often, when things aren’t going well, when the pain feels as if it’s ripping at my heart and tearing at my soul, I allow my feelings to pour onto the paper like water poured from a pitcher. As I wrote, in one of my first posts, it’s okay to cry ……and it’s okay for others to know that you cry. I have laid open my heart, and my soul, for all to read and understand how this terrible disease has affected me, and our family.

We who live with Multiple Myeloma live for each day and for a cure, but we also exist in reality. We know that life can change in a second. We are excited and can experience joy in the smallest of things – like an M-Spike (monoclonal protein) that has dropped even a tenth of a degree (it should be zero). On days when our loved one awakens, with a smile, and says “I feel good”, it’s as if a blessing has been bestowed on us. We love those days when things go so well that we can “almost” forget they have cancer. Those are the days when we turn our eyes heavenward and say “Thank you, Lord”.

There are also those days when their pain is so unbearable that each step takes their breath away. Those days when we want to question and say “Why him, Lord?” Those days when the pain doesn’t allow them to move, once they are settled and comfortable. Those days when you hear them whisper, “I don’t think I can take this anymore.” Those are the days that bring tears to your eyes, and a lump to your throat, and the days when I beg “Lord, please let me have him for just one more day.”

Even though our numbers are spread across this United States and many countries of this world, we don’t fight our battles alone. We have forged friendships through the many avenues made available to us on The Myeloma Beacon , and the Multiple Myeloma Support List at Acor, the responses in the forums on these websites are remarkable. The Multiple Myeloma Research Foundation  , founded by Kathy Giusti, herself a victim of Multiple Myeloma, is a non-profit organization which is not only leading the race in donations to find a cure for MM, but is educating the public about this terrible, incurable disease. And, of course, Facebook has forged friendships worldwide……..strangers who have become friends, because of MM.

Two years ago, I knew nothing about Multiple Myeloma and the devastation and heartbreak it brings to families. I had no knowledge of Velcade or Revlimid or Dexamethasone. What were bone lesions? And, how painful could a compression fracture be? I didn’t realize that pneumonia, or kidney failure; or something simple, like a sinus infection, could bring almost instant death.

This holiday season seemed to be hard on those with Myeloma, and for that reason I chose to write this blog. We become friends and soulmates because of the lot we’ve been given, and four of those friends did not make it through this holiday. There are those, with MM, that have lived for years…..and then, there are those, that God chose sooner. Each patient, each treatment is different. Why one lives longer than another, is yet unknown. We are only happy for the days we’ve been given, but we constantly pray for many more.

Gene Autry wrote the first version of this old western song, and over the years even though the lyrics have been changed by other vocalists, the meaning remains the same.

Have I told you lately that I love you?
Have I told you lately that I care?
Have I told you lately that I need you?
Well, darling I’m telling you now.

It doesn’t matter if you have Myeloma, or if you’re fit as a fiddle…..it just never hurts to say……..”Have I told you lately that I love you?”

And, most important, “Thank you, Lord, for another day.”

Day 63 – M-Spike Value Results from November 9 2011 Back – November 15 2011

They repeated my SPEP on November 9 2011. The results came today, November 15 2011. My M-Spike remains at 0.1 (IgG kappa). However, now I have “hypogammaglobulinema” listed on it also. I’m not sure if this is of concern or just part of recovering from stem cell transplantation. The report also lists: Mild elevated alpha-2 fraction (alpha-2 macroglobulin). Again, not sure what that means.

Good news, at a bad time………..

M-Spike is Zero!! That good news could not have arrived at a better time. Even though my honey was still spiking a fever, and felt terrible, it did bring a smile to his face…..and tears to his eyes.

It has been almost two weeks (tomorrow), and we’re still taking up space in a hospital room. We’ve changed floors, and daughters, and are still fighting the Pneumonia and Staph infection…….and we’re glad the MM decided to take a break!

On Saturday, he was moved from the Telemetry Floor to Regency Hospital (a hospital within a hospital). Regency is the Long Term Acute Care, on the 5th floor of FGH, where he can continue to receive antibiotics, breathing treatments, and physical therapy, and get well enough to “eventually” go home. (So far, he isn’t to the point of having that discussion.)

He still has pneumonia in the lower lobe of his right lung, but his breathing is much better, and the Staph infection is still prevalent. The Infectious Disease group is collecting blood and growing cultures, and believe that the Infusa Port is the source of the Staph Infection. If that turns out to be correct, there will be surgery in his future….to remove the port, and try to clear up the infection. In my opinion (and you know how much that is worth) that has to be the source…..otherwise, with all the antibiotics in his body……surely it would be cleared up.

And, because his stomach is so sensitive (and he’s had so many antibiotics), I’m wondering when the C-Diff (caused by antibiotics) is going to show up!! (Not that I’m a pessimist…..I just know this man, and his stomach!) And, once one has had C-Diff, it usually recurs.

We’ve had such a week! I ended up in the ER on two separate nights, in horrible pain. And….wouldn’t you know  one of the ER docs was one my honey had (before pain control). One of those that thought we were in for drugs……which we were!! So now, “the old lady” is back, in pain…..”my, my”. As it turned out, my pain was an abscessed tooth that took on a life of its own. And, my face looked (and felt) like I didn’t win the fight. Almost one week later, I still have a “puffy” face, my lips are numb and tingling, and my mouth is sore…..and I’m minus two teeth and one permanent bridge (yep, the teeth were anchoring the bridge).  I had really hated that bridge……but I just didn’t realize that God was going to put me thru such misery so I could get rid of it! So, in this instance…..I didn’t “blame” God……I thanked Him!!

On Sunday, we had a changing of the guard around here. Youngest daughter, Robbie, had to return to TX and her little family, and work. Our eldest daughter, Gale, was glad to escape the colder weather of PA and come to our aid. And, since she’s still recovering from her own illness and accident, the timing was perfect. I don’t know what I’d do without these two and their helping hands. We’ve all learned that when one is tired enough, a hospital “bed chair” sleeps pretty well. Thankfully, my honey is well enough to be left alone these past few nights.

MM is usually the underlying cause of many of our problems. We’re so happy it didn’t join this fray and cause additional problems.  It was nice to have good news…….some sunshine behind those dark clouds.

Day 35 – M Spike Values are back from October 12 2011

My M Spike values done on October 12 2011 were sent to me today. No change from pre-stem cell transplant and post-stem cell transplant. I don’t really know how to interpret the “no change”, but I don’t think it is anything to be concerned about at this point. I’ll know more after I have the bone marrow biopsy on November 2 2011. I think the cytogenics are more important than the M Spike value.

Back to Dominating the Cancer Center

Today I have my check up after my five week vacation from the cancer center. I received a very warm welcome by both my phlebotomist and the receptionist. Both recognized that I have not been around for a while. I am hoping that 5 weeks will turn to three months very soon.

The point of this check up is to take a look at how I am doing now that I am in maintenance mode chemo and where my M-spike and other counts are at. We want an M-spike of 0.0! The last 6 tests have come back 0.2, 0.2, 0.2, 0.2, 0.2, 0.1 respectively. Not bad given I started at 3.0 and the target is a big fat ZERO!

On a side note, a heat wave is hitting Michigan! We hit 40 degrees yesterday…watch out. The climate change is starting to motivate me to take my health back by dominating running again. It’s been a challenge to find the time and motivation to exercise with kid #3 added to the mix.

By the way, I will be speaking in Frankenmuth (MI) this Saturday for those in the area! Feb 19th, 7:30-9:00AM, Zehnder’s of Frankenmuth – South entrance. Topic: Dominating Cancer through Faith, Cost $6.00 plus tip (breakfast). PLEASE RSVP to fcm.muth@gmail.com as seating is limited.