Tuesday, August 6, 2013

You Want Me To Do What??

 I took my honey to his GP, yesterday (it was a struggle, but he finally agreed to go...in an attempt to find out why he feels so bad.)

(1) On Friday, his Blood Glucose was 263 and daughter Gale (nurse) gave him Insulin. (In the hospital, insulin is given if it is over 150.) Said GP got irritated and told me I was "premature" in doing this. So.....here's what he advised: Increase his oral med (from 2.5 mg to 5 mg), take Blood Sugar twice each day....and if it's over 250, give insulin.  Isn't that what we did? (Except that we didn't increase the oral med.)

(2) Several months ago, we were having issues with Bob's Blood Pressure dropping. He was on a "check BP and if the Systolic (top) is over 150 give BP med, and if it's below 150, do nothing" plan. (Another GP had us doing this.) This GP (we changed docs) did not like that plan, so put him on a med to bring his BP up and I could understand this. When it finally got back to what I considered "normal," I discontinued the drug. Yesterday, when I revealed that to the GP......I was told I need to ALWAYS give him the drug to bring the BP up...and if it's over 150, give him his BP med to bring it down! So, the BP is now in a normal range and I'm going to give meds to cause it to go up and then give him meds to cause it to go down.  What????? How is that different from what I was doing....except I wasn't pushing it up (it has not been low, for months). This morning, the systolic was 122, and I really had a hard time giving him a little white pill to make it go up.

 (3) GP advised that my honey's meds for anxiety/depression should be increased, and my thoughts were......."if we keep seeing you, I'll need to have my own increased!"

(4) An antibiotic was prescribed for the bacteria and mucus, found in his kidneys. I'm hoping this is the reason he has been feeling so bad. If so, it was worth the trip!

I'm not trying to play "doctor" as I was once told, by a friend. I just have enough sense to question what sounds unreasonable or ridiculous. Too bad that our good Dr. H. isn't a Hemoc/GP!! 

My honey told me last night, as we were getting close to sleep....."I was praying that you and that doctor weren't going to get into a fight.....I could see the hairs standing up, on the back of your neck."  (Next time, he may not let me go with him!)

We appreciate your comments.......


Tuesday, May 21, 2013

The Patient or the Caregiver?

Not long ago, a Multiple Myeloma patient asked the following question on the Multiple Myeloma Support Group Facebook page:  "I often wonder, what is mentally worse, the person who has MM or the wife, husband, etc who cares for that person?"

Of course, responses were many and varied from both MM patients and caregivers. The concensus was that the patient gets the worst end of the deal.  As one would expect, most of the MM patients felt that their caregivers had it worse.

MM leaves no stone unturned, so to speak, in the patient's body. It affects the blood and bone marrow, it can leave the bones, including the skull, with lesions (looking like lace or Swiss Cheese). The bones become weakened and fragile, and with the fragility comes the risk of fractures. The kidneys are affected, as is the immune system; leaving the patient vulnerable to all types of infections.  The various types of chemotherapy treatment, while attacking the cancer cells, also attack the good cells which can also introduce other organ issues.

While it attacks the patient's body, the Multiple Myeloma metastasizes to the entire family - mentally. Everyone is affected, but the caregiver becomes immersed in everything dealing with the patient; the care, the disease, the frustration, the treatment, the decision making process, the drugs, stress, lack of rest, lack of sleep, new responsibilities that were once handled by the patient, and often financial responsibilities. Cancer isn't cheap!

The patient's body is often racked with pain, but once the journey is over - the pain is transferred to the caregiver and the family. The pain isn't the same - it's the pain of grief, lonliness, frustration, anger, despair, decisions, and again financial responsibilities.

I'm so thankful I have not yet had to travel the final leg of this journey. We've been fortunate. My honey was diagnosed in October, 2010 and after six cycles of Velcade/Dex, he achieved a short response/remission the following May. He relapsed after only three months and Revlimid/Dex was introduced. This time, after only two cycles he was, once again, in CR and has been so (without a SCT) since November, 2011.

He is bothered by almost continuous pain, in his back, if he stands too long - even with pain medications. And PN is a constant companion even though he has had no Velcade (believed to be one of the culprits) since May, 2011.

As his wife and caregiver, I've been completely "wrapped up" with him and his cancer since he was first diagnosed. He had enough going on, so I took it upon myself to take care of his medications and his appointments. I began to research every bit of information I could find on the subject as well as any supplement that might help with whatever his current issue was. I became the record keeper and started a journal with minute details of changes taking place within his body - on a daily basis. I created a medication list with the name of the drug, the dosage, the date started and the instructions. His system was, and still is, very sensitive to any change, so that list became extremely important. Whenever he began to have issues, I checked the medication list to determine if there was a new drug or a change to a drug. More than once, that list helped to resolve an issue.

I had always "bragged" about my own good health. I was in my early 70s, and I had never had to take any meds with the exception of a weekly bone strengthener. My honey was in remission and all would be right with the world.  It was not to be.

Just about three months ago, early one morning I was awakened with pains in my chest, arms and jaws. I got out of bed, took a baby aspirin, went back to bed and the pain subsided. The next morning, about the same time, the same thing happened. I allowed myself to lie in bed, for awhile, and try to reason that it was the bone strengthener - perhaps it was causing ONJ. Of course, I couldn't wrap my mind around why my chest, back, and arms were hurting! I finally got out of bed and once more, took baby aspirin - this time I took 4 rather than just 1. The pain didn't go away. I took my Blood Pressure, and I knew enough to know that there was trouble in the making.

My Blood Pressure was dropping and my heart rate had risen to well over 100 (it should be in the 70 - 90 range.)  Around 8 a.m. (4 hours after my pains had started), I called our daughter Gale, a RN.  A good "tongue thrashing" by said daughter for not calling earlier, a trip to the ER, IV meds to get the heart rate down and the blood thinned (it had gotten so thick it was unable to be drawn), a Heart Cath, a few days in the hospital, a diagnosis of AFib, and a handful of new prescriptions later....and I was now among the "elderly" (I do hate that word!) that must take meds.

I could not help but wonder why my heart issues happened AFTER things had gotten better, in our house.  As our daughter Robbie (who made the trip home from Texas to help out) said "Mom, this was a wake up call". I didn't have a stroke, and I didn't have a heart attack, but I had been given notice that I needed to start taking better care of the caregiver: me!

I know, without a doubt, that it's my honey who got the worst end of this deal. I'll continue to do everything within my power to assure that his journey is as comfortable as possible....and I'll try to take better care of me while I'm taking care of him.

Please feel free to leave a comment: 

Thursday, April 4, 2013

An Angel gets his wings....

My honey was diagnosed with Multiple Myeloma in October, 2010.  Seven months prior to that, in March, Mike Murray from our neighboring state of Alabama was diagnosed. Mike's wife, Angie, and I became friends through a mutual friend, Dina, who knew that we had something in common.....husbands with the same type of incurable cancer.

When I first became friends with Angie, her honey had already had two Stem Cell Transplants, but was taking Chemo. I couldn't understand, if he'd had transplants, why he was still having to take Chemo? Angie explained that Mike's MM was very aggressive, and he would probably always be on treatment.

For much of the time I have known Angie, they have been at MIRT (Myeloma Institute for Research and Therapy) at the University of Arkansas in Little Rock. They lived in a furnished apartment in Little Rock; supplied by a church for patients who have to be there long-term.

Angie has been Mike's full-time caregiver as he has traveled this journey. She has been his source of support and comfort, and has truly exhibited the Bible's phrase, "the strength of Job."  Her faith and love has never faltered as she has walked this often stressful, and tiring pathway with the love of her life.

On Thursday night, just before Easter, Mike was moved into a hospice facility. Those of us in the MM community knew that Mike's journey would soon end. Angie's postings on his Carepages website had become infrequent, and we knew that all her waking moments were being spent by his side.

The day before Easter, Angie's "Magic Mike" finished his battle and ended his journey. May the rest of us caregivers, in the MM community, learn from Angie Murray.  She faced the unthinkable with grace, dignity, strength, and faith .......

and her Angel got his wings, on the perfect weekend.

Sunday, February 24, 2013

Bringing you up-to-date

I've really been slacking on my blogging. In order to catch everyone up on what's been happening at this MM house, here's a quick run-through:  Home from our almost month long RV Thanksgiving trip to Texas, Christmas here and gone, wonderful and unseasonably warm 'porch-sitting' weather in January, a weekend trip to the "Big Easy" and six Mardi Gras parades, a visit in February from a dear Iowa friend, and a tornado that ripped through a nearby town and destroyed the home of another MM patient and his wife/caregiver. Suddenly you're up-to-date. (And you really missed nothing important!)

Thankfully, we got through most of the winter (it isn't over yet, is it?) without my honey having the flu ..... or worse, pneumonia. Just a bad cough and cold, while in TX, but the good Dr. H. prescribed an antibiotic which kept it from getting worse.

Lately, we've been battling issues with low Blood Pressure, which usually indicates either dehydration or a kidney infection. He's gotten fluids, at the Cancer Center, and has taken 14 days of Cipro. This week, we're going to a new Internist to determine what can be done to keep his BP where it's supposed to be.

Today has been a "walk with two canes" kinda' day........he's dizzy (it isn't the BP or his Blood Sugar), and very unstable. Seems like a bad case of Vertigo, which can be miserable. Glad he has a doctor's appointment this week!

All in all, things are pretty good at this house. My honey doesn't always feel good, gets tired very easily, and spends quite a lot of time in his recliner....dreaming about "what might have been".  He's really one of those "you don't look sick" people - he looks good.....now, if he could just feel better!!

Thank you for your support and for reading, and I'll try to be a better blogger. Just know, if I don't post....it's probably good news!

Wednesday, November 21, 2012

Giving thanks, for more than just one day.......

We made it through October! We lost a dear friend, but nothing bad, traumatic, monumental, earth-shattering, or even mildly disconcerting, etc. happened in our house.  For those of you, unaware, October is generally "the" month. If it's going to happen, it happens then.

I remember when I first began this blog, I read on the blog of another that MMers and caregivers tend to blog less when "things are good". At the time, I thought "that's not me.....I'm wordy, I'll write". Today, I realized he was right - I am blogging less, because there's really not much to say. For that, I'm extremely happy!

We moved our Motorhome back to our house at the end of October after a month's stay on the beautiful MS Gulf Coast. As I've often written, we never know if plans we make will happen - so nothing is "concrete". Plans are made - to be broken!

Ever since his diagnosis, Bob has had so much trouble with his legs. They always seem to hurt, and he has such a hard time moving around. Sometime ago, on the Multiple Myeloma Support Group FB page, someone offered a suggestion regarding a supplement prescribed by the Dana Farber Cancer Institute, for MM patients experiencing neuropathy.  I searched for, and found, the Acetyl L-Carnitine HCI - 400 mg w/Alpha Lipoic Acid - 200 mg. and began giving him one in the morning and one at night (after first consulting with his doctor, of course). Just a little under a month, and his legs are so much better. Nothing else, in his medication regimen has changed .....so it has to be these little gems that are working! I've learned that it really is (pardon this expression) a "crap shoot" .... just never know what will work and what won't. And, things that work for one patient have no effect on another.

With my honey doing so much better, we decided to try (that being the operative word) another RV trip! This time with Texas, and our youngest daughter as the destination, while the weather was still good and with Thanksgiving approaching. I had to be assured that Bob could handle the driving (that isn't my job).  I've become very adept at helping him get set up, after we arrive, and I'm a great co-pilot (you know the kind - I'm good at "move over - you're too close to the edge, get off the center line,  Bob!! you're too close to that truck, OMG!!) He just laughs.....and ignores me!!

With three puppies, I really think he had the easiest job - even with me "trying" to tell him what to do. I rode, from Mississippi to Dallas, with a pillow and 3 dogs in my lap. There were four of us in the seat, and three were comfortable - you can guess which three!

The drive across east Texas, after stopping, for the night, in Bossier City, LA was so pretty. I've never thought of Texas as a place to take a "Fall Foliage Tour", but the trees were absolutely beautiful. The yellow oaks, orange leaves of the sweet gum and red maples against backdrops of pines were stunning.

We arrived at our campsite, in the Dallas area, about mid-afternoon - ready to see our baby-daughter (42, but still our "baby"). My honey was tired - but he had done it!

MM has made so many changes, in our lives, but it has also made us so appreciative and so thankful for anything/everything/many things. I appreciate everything that my honey is now able to do .... and I tell him so. I thank him for trying. I know there are times that he hurts, and he's tired - but he tries to keep going. I'm thankful. I'm thankful for everyday that I have him.

Happy Thanksgiving to all of you - just remember.......be thankful for every day!!

Thursday, October 11, 2012

We don't really like October.......

We entered into the month of October with a bit of trepidation, and rightfully so. This past week, two years ago, we were back and forth to the doctor searching for answers. We had just celebrated our 50th Wedding Anniversary, took off on what was to be a great adventure in our RV, and things began to go downhill from there.

October, 2010 was the month my honey was diagnosed with Multiple Myeloma, and began to face the pain and treatment that accompanies cancer.

October, 2011 - one year later - back in our RV and on the beautiful MS Gulf Coast......he became very ill.  Pneumonia, Renal Failure, and later, a Staph Infection, provided him with a "most expenses paid" three week stay in the hospital.

October, 2012 - two years later - back in our RV on the MS Gulf Coast (stubborn and determinded).  Enjoying beautiful weather with newfound friends - people who had come to enjoy the week long 16th Annual "Cruisin' the Coast". Over 6,000 antique cars and trucks representing 37 states and hundreds of cities and towns converged on the cities along the coast.

This October, my honey is doing good - pain pretty well under control (with meds), no illness or infection, and still in remission. He manages the fatigue, weakness and instability that seems to accompany his disease.

Unfortunately, yesterday we realized this October was to be no different than the other two. It has been marked by sadness at the death of a dear friend, Kermit Littleton. He and my honey had been friends for over 60 years. Kermit was diagnosed with cancer just 8 months after Bob's diagnosis, and he didn't live quite as long as the doctor predicted.

Bob, Kermit, and Sam .....together for the last time ...... May, 2012
Next weekend we, along with the third couple of our group, Sam and Ann Greco, will head to the north Georgia mountain town of Ellijay, to celebrate Kermit's life and surround his wife, Nita, with our love. We'll say goodbye as his ashes float in one of the trout streams, where he loved to fish.

We'll be happy when October is behind us........

Thursday, September 6, 2012

Making Adjustments.....

“Happiness comes from... some curious adjustment to life.” ... Huge Walpole, Sr.

During the almost two years that we've been dealing with my honey's MM, we've waded through many "curious" adjustments.  Prior to his diagnosis, I'm not sure if I'd ever heard of Multiple Myeloma - but I knew, just by the suffix  'oma', it was some type of cancer.  I was definitely eager to learn more, I HAD to learn more. I HAD to know what he (we/were) was facing.

I became very inquisitive, not only of his doctors and nurses, but of others who were also dealing with this rare form of cancer. I was thankful for my computer skills and quickly learned that everything online shouldn't be construed as gospel. Being inquisitve, and prying, took me to great Myeloma websites, lists, blogs, and put me in touch with other patients and caregivers on this same journey. 

I now see others, on the various Myeloma websites, that have the same curiosity and are just as inquisitve as I was. I encourage curiosity and inquisitiveness, and I advise that everyone keep in mind that changes, improvements, advancements are being made everyday. It's wonderful to read that MM may soon be thought of as a "Chronic Disease".

We've had to make many adjustments to both our lives, while on this journey. One begins to understand that the damage the Myeloma causes to the bones may mean that former activities, once enjoyed (like golf or working in his shop), may no longer be possible.  Walking long distances can cause pain and may even be impossible.  Fatigue is a big issue, while balance and stability are even more so. Just recently, while getting ready to FINALLY try and get our RV back out on-the-road, my honey had a terrible fall in our kitchen. It can only be best described as a "stumbling, staggering, trying to stop falling" type of fall. It started at the kitchen door and ended when his head slammed into a cabinet across the room, and his knees hit the hard tile of the floor. Thankfully, no broken bones - just bruised and swelling and off his feet, with legs elevated and with ice packs to try and alleviate the swelling.  This sudden, unexpected, (certainly not needed) fall has caused a set back.

And just as we have had to make adjustments for him.....I've made them for myself. No longer do I feel that I can "jump in the car" and go somewhere. Even though he would probably be okay,  I don't leave him alone for very long periods of time.  That's an "adjustment" that I haven't been very successful in making for myself - that feeling that he shouldn't be alone. I'm working on that one!

            As another caregiver/blogger wrote, life tends to become a balancing act. We begin to realize that life isn't what it once was. We do what we can, when we can. We make adjustments. We often make plans that are unable to be kept.

Things that my honey once did, or were his responsibility, have (in many cases) either become mine.....or often just don't get done. He isn't supposed to lift anything that weighs more than 10 lbs. That's quite an adjustment for him, and he doesn't always adhere to that restriction. After all, it isn't very "manly" to allow a woman to do the lifting of heavier stuff......like a case of bottled water, etc.

Accustomed to going wherever we wanted, whenever we wanted, is no longer possible.  My honey is unable to ride long distances (we loved road trips), unable to sit for very long, unable to stand for very long, unable to walk very far ....... you get the picture.  We've had to adjust for all these new inabilities.

As Sean Murray, another MM "victim" and blogger,  wrote in his column in The Myeloma Beacon, we've had to "say goodbye" to life as we knew it.

We're learning to balance this life with the days, weeks, months, and hopefully years that my honey has left.  It isn't easy to "say goodbye" to the life we knew and enjoyed.  Probably the best adjustment has been to learn to enjoy the life we have. Treasure each and every day. Take nothing for granted.

Happiness absolutely is whatever curious adjustments you need to make....to your life (let's just hope YOUR life doesn't include MM!)