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.”

A lack of confidence ……(Part Two)

Ever since Bob was diagnosed with cancer, his bones are pretty weak, he isn’t very stable; which means that I’m left to do many of the heavy things around the house. If we take a trip, I load the car. If we end a trip, I unload the car. And I’ve almost grown to hate the RV, because it’s like moving from one house to another.

And, because his reflexes aren’t as good as they once were, I do the majority of the driving. His driving stints have been limited from home to town (4 miles) or maybe to Laurel (18 miles). Until this trip to Texas (this Thanksgiving), when we stopped to get gas. I came out of the station, from using the “necessity room” and there he sat, under the steering wheel – just grinning.

I said “Are you sure you feel like driving?” “Wouldn’t you like for me to continue?” To which I received “Yes, I’m fine.” and “No, I can do it.” Did I think he was going to bound out from under that steering wheel and let me take over?  No, but I certainly prayed that he would. We merged back onto I-20, headed west, with me sweating as profusely as if the western sun was baking me. Needless to say, it was a good case of nerves – mine.

After about twenty minutes of silence (mine). other than the deep sighs (mine), there wasn’t a sound of noise in the car ……other than the rub-a-dub-dub when he’d go from one lane to the other and linger on the caution bumps between the lanes. He was “fiddling” with the gadgets, on the dash, trying to get everything set to his specifications, and I was watching the interstate with eagle eyes (just as if I was still in charge of the steering wheel) and clinging to the door handle with a deathlike grip. I’m not sure what good I thought either action would produce.

He’d get a little too close to one lane, or the other, and I’m sure the veins in my hand looked about to burst as I gripped the door.  I was literally sitting on the edge of the seat. He lingered too long (or so I thought) on the rub-a-dub-dubs and was getting (or so I thought) too close to the 5th wheel in front of us. I’m not sure if I let out a “monumental sigh”, or made a comment, but whatever I did, I soon found myself back under the steering wheel, with a very unhappy passenger! Now, how we got from me being the passenger to me being the driver shall forever go unmentioned. Let’s just say, it wasn’t a pretty sight and there were some words spoken (his).

We did drive for many miles in unspoken silence, but by the time we got to Texas, we had mended our fences. A couple doesn’t stay married for 50 plus years without learning how to give and take. But  admittedly, I had already begun to worry about that long drive back home. Who would sit under that wheel? Not that I’m the Danica Patrick of drivers (gotta’ know NASCAR for this to mean anything), but I’ve been in control of the car for so many months – it has just become “my thing”.

God does work in mysterious ways. We were in Texas less than 24 hours when I had a major head problem; blacking out and so dizzy I could have been a blonde (sorry, girls).  Having had two cousins with malignant Glioblastomas, the thought crossed my mind that I could be in real trouble. However, a couple of trips to an ER, an overnight stay in the hospital,  a CT Scan and an MRI proved there was nothing major going on in my head (I know there are many of you who are grinning and thinking “knew that all the time”). It was just a severe case of Vertigo (Inner Ear issues). We were advised that Texas should invite the Gorrells to stay a few more days, since my honey is unable to drive the entire distance. I probably wouldn’t do any better than he did in keeping the car between the rub-a-dub-dubs. Nor did I feel like I could be in control of anything, especially a car! (Side note: For the first time, in years, I didn’t have to cook Thanksgiving dinner!)

So after a few days rest, between the two of us we’ll try to get this car, us, and everyone else on the interstate, back on home territory unscathed. And, I wonder if my honey will be as concerned about getting in the car with me, as I was with him. Yes, God really does work in mysterious ways. I’m so glad He allowed my dizzy spell to happen while my feet were on the ground rather than under the steering wheel.

Still working on building that sense of confidence! Stay tuned for “Lack of confidence …..Part Three”

A lack of confidence (mine)…..

About the first part of August, 2010, my honey closed up his shop. For years, he had designed and built cabinets, woodwork, furniture, mirrors – almost anything one could imagine; he could draw and build. His shop contained every type of power tool imaginable.

We were going to celebrate our anniversary and then take a long trip, in our RV. When we returned, he’d reopen his shop and go back to his building. Little did we know that fate had other plans. MM intervened and the shop continued to be silent until the first part of this week, over a year after it had been closed.

Before retiring, I was a software consultant and a road warrior. I traveled, for my job. My work week usually began on Sunday night when Bob would drive me to the airport, and I would fly out, and it ended on Friday when I flew back in. For almost twenty years, that was our routine. And while I was away, Bob’s work continued in his shop ……without me.

Not until this week has he felt well enough, or been well enough, to even think about plans and wood and tools. And truthfully, I was always concerned that the wood dust (he never wore a mask), or the glue, paint or paint thinner might, in some way, have contributed to his cancer.

When he began to start flipping through the pages of his Woodworking Magazines, my heart swelled. I knew he was beginning to feel well enough that he was “itching” to get back to his tools and the wood. A love of building had been inherited from his grandfather and his father. It was in his blood and strangely enough, that’s where his cancer is.

This week he opened the shop and for the first time in over a year, the sounds of the saw, and sander, and planer emanated from the shop. How wonderful! But little did I know how skittish I would be about him returning to something that he had done for years……without me being around.

Never before had I felt the need to go and sit in his shop, while he worked. I had never “hovered”. But now, it was almost as if I HAD to be there……watching over him. I found myself telling him to “be careful”, and worrying that he would get too tired.  He hadn’t been out of the hospital  but a couple of weeks, and before that he’d pretty much been a couch potato. Was he really strong enough to do this? He had been working with power tools for years, but I found myself actually being afraid that he would cut himself. (Kept that little bit of news to myself!)

I had been a big proponent of him getting exercise, getting up out of his chair, doing something…..and now that he was, I was worried. Was he doing too much, too soon?

He finally told me that I was acting like a “mother hen”. He was trying to get back to normal – his kind of normal. And, I needed to do the same. I just had to have confidence in him, and his readiness to do this.

I was happy that he was building up his strength, and that the pain in his legs was becoming less frequent – which meant that his need for pain medication was also becoming less frequent. He also knew that he couldn’t take pain meds and work with his power tools.

He had confidence in himself and his ability to return to normal …….now, I must work on my confidence, and in the fact that he really would be okay among those saws, and sanders, and planers! I’m working on my confidence ….. even if it takes valium to do it!!! (Just kidding!)

Smoking, Liquor or Myeloma…..

So much has been written lately, on Multiple Myeloma websites, about potential breakthroughs into the mystery of MM. The cause of this incurable type of cancer is unknown, but it has been mentioned that it “could be” caused by Pesticides, Herbicides, Petroleum based products, Wood Dust, and/or Agent Orange. (My honey has been exposed to all except Agent Orange.)

Of course, no one really knows the reason for MM……but it has also been stated (by New Zealand researchers) that people raised on Livestock farms may be more susceptible to blood cancers (of which Multiple Myeloma is one). http://www.medpagetoday.com/HematologyOncology/Hematology/27796  (My honey wasn’t “raised” on a livestock farm; but he was a livestock farmer. So, are our daughters in danger?)

And then there’s Dr. Bradner, of the Dana-Farber Cancer Institute, who helped to create a hybrid molecule which has been named JQ1.  This molecule is thought to attack the cancer cells and make them become normal (I’m paraphrasing and stating this in layman’s terms). Mice (not sure if they were The Three Blind, or not) were injected with Myeloma cells and then the hybrid Molecule. The mice that were injected lived, mice that were not injected with the Molecule JQ1, died. Dr. Bradner shared his findings with 40 labs, in the US, and 30 in Europe – many of them pharmaceutical companies. Hopefully, this will soon be turned into a pill and can be tested in humans. Amazing! The possibility of an oral drug which will make a cancer cell think it’s a normal cell!

http://www.ted.com/talks/jay_bradner_open_source_cancer_research.html
(The transcript of Dr. Bradner’s talk can be found on the right-hand side of the page.

Vaxil, a drug company in Israel, is in the process of developing a vaccine http://unitedwithisrael.org/israel-develops-cancer-vaccine/ and testing it against MM. This vaccine is supposed to treat cancer, and keep it from returning. Of course, this will have to be approved in the US by the FDA, and go through clinical trials here in the USA.  Admittedly, it’s a long way out……..but perhaps there will be hope for someone, somewhere down the line.

Rhubarb, a plant typically grown in cooler climates (Midwestern and Northern states in the spring) has a compound Bipterostilbene which seems to significantly inhibit proliferation of myeloma cells and has been said to EXTERMINATE myeloma cells.

http://ash.confex.com/ash/2011/webprogram/Paper42196.html

The plant stalk, which is very tart, is the only edible portion since the leaves are toxic. Usually, the stalk is combined with strawberries (Strawberry Rhubarb Pie or Strawberry Rhubarb Jam). The Chinese have used rhubarb, for centuries, as a laxative. I wonder how prevalent Multiple Myeloma is among their people?

A Florida State University Researcher has discovered that eating dried plums (prunes) helps to prevent fractures and osteoporosis.

http://www.sciencedaily.com/releases/2011/08/110818093048.htm

The testing was performed on two groups of postmenopausal women, but eating this fruit can’t hurt MM men, either. And, it was believed that eating the fruit even reversed some of the bone loss. My honey isn’t much of a “prune fan” but think of the “other” benefits (no laxatives needed)!

My favorite article was on the website http://www.medpagetoday.com/ where it was stated that smoking and drinking liquor appears to “reduce” the risk of Multiple Myeloma. http://www.medpagetoday.com/clinical-context/MultipleMyeloma/29308 Thankfully, since I don’t smoke (and don’t intend to start) it seems that liquor has the greatest benefit. My honey has always been a teetotaler, so everything I said in the first paragraph just goes down the drain. It wasn’t the pesticides or herbicides or wood dust or petroleum based products (paints and paint thinners) – it was his not drinking that caused it!  I’m now sure if he’d taken a snort every now and then, we wouldn’t be facing this problem!! Of course, this study didn’t reveal how many of the smokers ended up with lung cancer, or how many of the drinkers became alcoholics. They just didn’t have Multiple Myeloma!

Molecules, Vaccines, Rhubarb Pie, Prunes, Liquor……if it isn’t one thing, it’s another. Just never know what may be coming down the pike and what might work. But please excuse me while I put my computer away and go get my glass of wine. If liquor works, I’m sure wine does, too!!

Changes and Surprises…..among the colors

Thursday was another “trip to Hattiesburg” kinda’ day. On the drive back home, the brilliant afternoon sun shining from a cloudless sky,  made the beautiful changing colors of the trees appear even more vibrant. The brisk fall wind, sent leaves floating across the highway. As I drove while Bob napped, the words rushed around in my head …… just like the leaves rushing toward the ground. Sentences wanted to flow so badly, from my head to my fingers……but those fingers were otherwise occupied with a steering wheel!

It was a day of change. Long before Bob was diagnosed with cancer (that’s how we now define our lives…..before cancer, or after cancer), we had both discussed the need to find a new family doctor. And so, after his diagnosis, that’s just what we did. We later learned that we’d chosen a doctor without hospital privileges (the doctor’s choice). I was concerned that he did not do hospital admits, and of course, no hospital visits. How could he stay up-to-date with my honey’s needs and progress? So today we changed, again….to a doctor who specializes in Geriatrics, and has hospital privileges, and had attended him in the LTAC unit.

I was impressed that this new doctor didn’t send in a nurse to ask all the questions – which usually must then be retold to the doctor. He came in and checked his B/P (which was low) and listened to his chest. And, he said that honey’s lungs no longer sounded like a “bowl of Rice Krispies” (I may never eat those, again!). He wrote an order for blood work to try and determine if the pain in Bob’s thighs is caused by a loss of muscle mass. And, he wrote an order for a Chest X-ray, just to ensure that his lungs are really clear.

At the hospital, while providing information for Bob’s chest x-ray, there was a discussion about drawing blood, and I commented “Bob’s lucky, he has a port”. Lucky?? Really, did I just say that?  He has a port, because he has cancer. It probably wasn’t the best choice of words, but at least he doesn’t have to get stuck everytime.

Our day, at the Cancer Center, ended with a most wonderful surprise. We have two burgundy Multiple Myeloma car magnet ribbons, ordered from http://www.choosehope.com/, on the back of our car. I didn’t notice that a car had followed me into the parking lot, but I soon saw a face that I thought I recognized. It was the daughter of another Multiple Myeloma patient. She had followed our car, because of the ribbons. We had spoken, months earlier, when her dad was just beginning his treatment…..(and our wonderful Dr. H. is also his doctor). I had often thought of her dad, and wondered how he was doing, but had not seen him at the Cancer Center on the days we were there. As many of you know, I’m such a believer in “God puts us where we need to be….when we need to be” and “things happen for a reason”. I’m not sure why Lee Anne and I reconnected, but I’m so happy we did. She is so warm and has the sweetest smile……and her dad is in my prayers. (And, she now has MM car magnets on the back of her car!)

A day of change and pleasant surprises amid the beautiful fall colors.