Monday, December 26, 2011

An unwelcome surprise....again

My honey had been doing great - working in his shop, building beautiful Christmas gifts; oak serving trays, and oak hand mirrors with beveled glass.  On Friday, December 2, he sat again in the Cancer Center....for almost 5 hours .....getting his monthly Zometa and IVIG infusions. The Zometa to strengthen his bones and the IVIG to boost his immune system.

Just 3 weeks later, on a Wednesday, he felt great. The next day, he didn't feel so well and by Friday (a couple of days before Christmas)  in spite of the IVIG infusions to boost his immune system.....he had pneumonia, again.

We were in the Cancer Center and Dr. H. came into the waiting room to listen to his chest. He prescribed what I called "high-octane" antibiotics (2,500 mg. per day) and didn't think he needed to be in the hospital.

The kids weren't coming home this year, since the girls have been here several times to help when their dad has been in the hospital, so we've had a quiet Christmas (which is really what he needed).

I questioned why the IVIG would not have prevented this, and I was told if he had not had them, it might have been worse. He still doesn't feel good. His lungs hurt when he moves, or takes a deep breath, and his throat is sore .... but he isn't anywhere close to being as ill as he was in October, when he had to be helped from the bed to the bathroom.

Because the kids weren't coming home, I had made an "executive decision" not to put up the Christmas tree. It was very hard for me to do, alone, and Bob was unable to help.  I had searched, without success, for a table top Fiber Optic tree, and finally decided this house would decorate.....without a tree. After he got sick, and my mind began to have those thoughts that one should never have, I decided that I needed to put up our tree. Mind you, this was just 2 nights before Christmas.....but in days of old, trees were put up and decorated on Christmas Eve!

So, on Friday night, after my honey went to bed.....out to the storage room I went (ignoring the fact that the Bobcat, or Panther, of Cohay Creek might be lurking).  I told a friend, "I'm sure God has His hands full just trying to "redirect" my decisions". First, I couldn't get the storage room door completely open, and second there was no light. Needless to say, with all the obstacles there was no way the tree would get from the storage room to the living room. In the end, I think I was happy that God, or fate, had intervened.

As it turned out, we didn't need a tree. It was a quiet, peaceful Christmas Day at our house. And, I continue to be thankful for each day....and hope there will be many more.....days.....and Christmases.  

Thursday, December 1, 2011

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 just never hurts to say........"Have I told you lately that I love you?"

And, most important, "Thank you, Lord, for another day."