Sunday, April 8, 2012

Before our journey ends.......

Exactly 18 months ago yesterday our lives were forever changed; when we began this journey. Like most, we knew that  Bob had just been given a diagnosis of cancer, but we knew nothing about this incurable though treatable, and often even called chronic, disease. How quickly we began to learn!

We learned early on, that everything on the Internet isn't the gospel and shouldn't be trusted. We found great Myeloma websites, and blogs, with information and support from other Myeloma "victims" and caregivers.  We've been surrounded by wonderful friends, caring family, and above all ... great doctors.  Finally, we learned that sometimes there are comments, and people, that we just have to ignore.

It has often been a stressful year and one-half filled with everything from the initial diagnosis to pain and infections, both of  which are not uncommon for Myeloma patients. During this leg of our journey, we've had quite a few hospital visits. Again, not uncommon for Myeloma patients. I was even beginning to think we might get a "frequent visitor" card! Other than being on a first name basis with a great group of nurses, there are no added benefits.

Bob's back pain has begun to be almost constant, even with pain meds. On Wednesday, Dr. S. will perform another RFD (Radio Frequency Dennervation) which will hopefully bring much needed relief; as it did in February, 2011.

There are days when my honey doesn't feel good, but on many of those days he makes an effort to go to his shop. Hearing the sounds of the sander, planer, saws, or even the "elevator music"that plays on the television in his shop allows me (and maybe both of us) to forget, just for a minute, that he has cancer. The cancer that invaded his body hasn't taken away his ability to design and build beautiful furniture......it just takes longer.

Cancer, regardless of the type, can be debilitating, painful, stressful, and emotionally draining on everyone involved.  Amazingly enough it also provides time........time to focus on the really important things in one's life. Time to realize that nothing should be taken for granted. Time to realize that each day is a blessing. Time for each other.

The next part of our unplanned journey begins as this beautiful Easter Sunday ends.  We can only hope and pray, that somewhere along the way, a cure will be found............before our journey ends.

Wednesday, February 1, 2012

Remission .......this different place

Several blogs have been written lately by the Myelomaville People (that group of people that are either "victims" of MM or are caregivers of those victims) about Remission, and the affect on them, or their patient. Lori Puente, a good friend, designer and weaver of beautiful scarves, great blogger, (Riding the Wave), and expert caregiver on this journey for several years, with much valuable information, had a quote on her blog recently that "remission is an awkward place". I had never thought about it in that light ......but I realized, after reading her post, that's exactly how it is.

We, as the caregivers don't actually know what to expect, and I daresay the patient does either, during that time. There are several different definitions, on the web, for remission. The one that I seem to connect with, the most, is from Wikipedia. Strangely enough, it's under the definition for "Cure", and remission definitely does not mean cure.

A remission is a temporary end to the medical signs and symptoms of an incurable disease.

I would agree that remission can be a temporary thing, but I'm not so sure it means an end to
all the medical signs and symptoms. And, that is why remission is an awkward place. Remission, in our house, has not meant an end to fatigue, or pain, or feeling bad. Remission hasn't meant being back to "before cancer normal". I finally know what others, on this journey much longer than we, mean by the "new normal". The "new normal" is doing whatever one is able to do.

The "before cancer normal" was being able to play 54 holes of golf, in one day. The "new normal" is unable to play golf. The "before cancer normal" was always being able to drive. The "new normal" may not be able to drive. The "before cancer normal" was able to walk long distances. If the "new normal" walks even as much as one-half block, he's in tremendous pain. The "before cancer normal" got up very early every morning, went to his shop, and worked at least 8 hours. The "new normal" sleeps later and on days he's able to go to his shop, he may only be able to work 2 - 4 hours. The "before cancer normal" could lift anything. The "new normal" isn't supposed to lift over 10 lbs.  The "before cancer normal" loved road trips. The "new normal" is unable to ride long distances.  

My honey was first deemed to be "in remission", in April, 2011.....exactly six months after he had been diagnosed with MM.  Looking back, I think it was probably only "partial remission", because all his numbers weren't good, and he relapsed after less than 3 months. He was devastated. He knew that there isn't a cure, but I think he thought it might just "go away".

I've often written how he isn't always good about sharing how he feels. But after 15 months, I've learned to read the signals. He may not tell me, but on those days when he stays in his pjs, or is resting on the sofa most of the day......I know it isn't a good day. And when he needs more of his "little white pills" in order to endure the pains, in his back, I know it isn't a good day.

After just two cycles of Revlimid he's once again in remission. This time, all his numbers are great, and I believe he's in 'Complete Remission' or, as his onc. states, "Clinical Complete Remission". Meaning that all his simple blood tests are good, but no Bone Marrow Aspiration has been done. He's living a "new normal" kind of life on the days that he is able.

I resist allowing my mind to wander to the time when he may relapse from this period of remission. I'm living my own kind of "new normal" as a caregiver, medical researcher, pill giver, cheerleader, and optimist. Remission is definitely a different ......awkward place, but I'm so glad we're there.....for a little while, anyway.

Sunday, January 22, 2012

This is how it goes.....

I check the blogs of several other Multiple Myeloma caregivers, and patients, and in doing so realized that I hadn't written anything in almost a month. That's good! Means that things are really pretty quiet on this MM front.

My honey finally recovered from the maladies that were plaguing him.....and it's evident by the fact that he's getting bored. He's ready to get back out into his shop. I've been pretty successful in getting him to wait until the weather is better and those shop doors can be open to allow the dust and fumes to escape. (No more pneumonia or bronchitis needed!)

Last week, our Gorrell RV Park was open for business and Sam and Ann Greco, friends for many years, came and spent the week with us. We always have a good time sharing the cooking chores and playing cards (Pegs 'n Jokers), at night. Finally, it was like old times ....... with Bob feeling good (B/C).

On Friday night, we had our first night out in many months. For Christmas, our PA daughter and her family had given us tickets to a Kenny G concert at the Beau Rivage, in Biloxi. We spent the night at the Marriott Courtyard. I'm the primary chauffeur, and I had no interest in a 2 hour drive home, late at night. It was a wonderful concert.......and made me feel like things were almost "normal". My honey now walks slow, can't do a lot, but we were "out and about"! (Went to 'Mikey's on the Bayou' in Ocean Springs and had delicious Gumbo and Shrimp PoBoys.)

Maybe we did too much. He hasn't felt very good the past couple of days but this is really how it goes, at our house. One day we're up, and the next we're down, even though his numbers still look good. 

I think this is just how it goes.......with Multiple Myeloma.

Wednesday, January 4, 2012

Finally, the end is near.......

From the Friday before Christmas until now......"we" have been dealing with Pneumonia/Bronchitis. My honey spent one night, in the hospital, and I think the IV fluids/antibiotics did wonders to help turn him around and begin to get better. He isn't great about "sharing" information (I'm still searching for that class in ESP or mind-reading), but when you've lived with a man for over 50 years, you begin to be able to read some of the signs. He's talking more, and it doesn't seem to hurt so much when he gets up out of a chair (lungs are getting better).

He was supposed to use the Isometer every hour that he's awake .....and I'm just sure he's been awake for more than 2 - 4 hours in a day.....but that's about how much it has been used! I'm not sure why he hates that little device so much - but he does.  My "Hester" stubborn streak (one of the things I inherited from my mother) appeared, and I decided that he is an adult.....knows he needs to do it.....so I'm not saying a word!! Thank goodness, he's getting better without it. 

His appetite is non-existent and food makes him nauseous. This isn't anything brought on by the Bronchitis, so it's probably a side-effect of one of the antibiotics. Thank goodness, there are only a few days remaining. We're currently on an oatmeal, grilled cheese sandwiches and chicken noodle soup diet.

If he HAS to be sick, winter is such a good time. It's a great time to stay indoors - lots of pajama days in front of the fire. How miserable it would be if the weather was good, and he didn't feel well enough to be oustide.

Now, not that I'm a pessimist, but I have to wonder.......what's coming next?  We're finally nearing the end of this Pneumonia/Bronchitis thing......and I'm just hoping that there's nothing else planned (God's plan) for him, in the near future. Dear God....please let him be well, for a little while.

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 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."

Sunday, November 27, 2011

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"