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.  

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.

Those were the years.....

We've been home from the hospital just a little over a week. Just in time for my honey to celebrate birthday number 74. 74?? How can he be 74 when I'm only 39!!!  I look at him and still see that same good-looking young man that I met, in college, all those years ago.

Those were the years when we were healthy. Those were the years when we thought nothing about "getting old". Those were the years when cancer never entered our minds. Those were the years when we were young parents, with sweet baby girls (that had their days and nights mixed up!)

Today, we very happily and quietly celebrated number 74 with Gale (daughter/nurse). Last year, we weren't even sure that he'd be around for number 73.

Today, he received the very best birthday present of all, from the good Dr. H.  He is in Complete Remission/Response (there's a debate about the terminology.....but at any rate.....MM has taken "a hike", for the time being.)

So, without further adieu....without discussions of pain and pain meds....or being weak.....or having MM....we'll just end this posting on a positive note. Those were the years.....that have turned into these years.....these years when we face the winter of our lives.

Beautiful days, weeks, and months.......those were the years........that bring smiles from the memories we created.

Remission!! What a beautiful word.



  

How lucky we are.....

Tomorrow, we will have had my honey home from the hospital for one week. Our daughter Gale, "the nurse", gets her Stethoscope and listens to his chest.......and she says it sounds clear. Finally, the pneumonia is gone. He's still weak and feels bad, but she tells him it's going to take awhile for him to recover. Just standing, to shave, makes him weak and gasping for breath.

Today, we went to the Cancer Center for his monthly appointment with his oncologist, and Dr. H verified what "our nurse" had been saying. "You were very sick, it's going to take awhile for you to get over this." He finished up with "You are looking good". Dr. H can always put a smile on his face. If confidence in one's doctor is half the battle, then we're on our way to winning the fight!

What a long day this turned out to be! It was the day for the Zometa infusion, but because he has had pneumonia it was now necessary to begin having IVIG (immunoglobulins) infusions. The immunoglobulin is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used when the patient has had an acute infection or has a compromised immune system (as is caused by MM and the treatment thereof).

The IVIG is given in his Infusa Port, with Benadryl, Zantac, and Steroids and takes approximately 4 - 5 hours to administer. He slept much of the time during the procedure, and by the time we started toward home, near 3 p.m., the steroids had taken over ...... and he talked, non-stop!

He still has terrible pains, in his legs ...... those pains that are close to bringing tears. "Our nurse" has begun to give him Tylenol whenever he takes his Dilaudid, and it does seem to help. Dr. H also agreed it was a good idea as long as he doesn't receive more than 4 grams (4,000 mg), per day.

We know that it's getting close to time for "our nurse" to get back to her home, and her family (just as our TX daughter had to do), and I'm dreading that time.  How lucky we are. I thank the Good Lord, everyday, for these two special daughters. They are my strength. How lucky we are.

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.

An unexpected detour.......

Early last Thursday morning, my honey awakened me with chills and fever. He was extremely weak and needed help to navigate from the bed to the bathroom. I had also begun to see a pattern of 1,000 mg. of Tylenol having more success with his pain than 4 or 8 mg. of Dilaudid. I was also almost positive that the location of his pain (right, upper back just under his shoulder blade) was probably an indication of what I feared most - pneumonia. Coupled with my fear that he was getting dehydrated and beginning to have kidney problems, there was no doubt we were going to a hospital.

There were two or three hospitals within a 15 - 20 minute drive of our RV Park, but I made the decision to get him back to Hattiesburg, and the hospital where all his medical records exist. In his weakened condition, my concern was whether he could withstand the 1 1/2 hour drive. Friends helped him down the RV steps and into the car (I had barely been able to help him get to the bathroom - so I knew that trying to help him down the narrow RV steps could put us both in the hospital.)

With the flashers going, and my heavy foot (NASCAR drivers would have been so proud), we pulled under the ER canopy in about 45 minutes. Even though the ER waiting room was filled to capacity, he was bumped to the front of the line because of his age and his condition.

My worst fears were soon realized: Pneumonia and Acute Renal Failure. Little did I know that the news would soon get worse. He was moved, not to the Oncology Floor but to the Telemetry Unit (patients that are seriously ill or in danger of developing complications).

The Hospitalist on duty informed me that he was stopping Bob's Chemo (Revlimid) because his blood counts and platelets were dropping.  Just 6 days earlier, his Platelets were 158,000 and now they were 78,000 (two days later, they were 43,000).  He would be headed toward a Platelet Infusion and probably a Blood Transfusion, if the numbers didn't begin to correct. (Note: His last dose of Revlimid was on Thursday morning, prior to our hospital trip, and his Platelets today were 52,000.  Still not great, but an improvement.)

On Friday, we were told that he had some type of unidentified blood infection, which is causing chills and fevers (almost on a 12 hour schedule.....usually at 4 p.m. and 4 a.m.). And today, I was told that there is a concern of Acidosis (excessive acids in the body fluids) which is being caused by the deteriorating condition of his lungs and kidneys. The bags of antibiotics and fluids, hanging on the IV pole at his bedside, seem to be having a hard time battling the unknown infection attacking his body.

An Infectious Disease Specialist was called in and has identified the infection as Staph (thank goodness, not MRSA), and added more antibiotics to his IV pole. The origin of the Staph is unknown, but the ID Specialist is leaning toward the Infusa Port (for administration of chemo, etc.) Cultures have been inconclusive.

A Pulmonologist has been consulted and is concerned that very little progress has been made, in treating the pneumonia, (in both the upper and lower lobes of the right lung),  even with all the antibiotics. He will perform a Bronchoscopy (use of a flexible fiberoptic tube to view the insides of the lung) and obtain samples, tomorrow morning.

On a positive note, his kidney functions seem to be improving  and the stoppage of the Revlimid has allowed his blood counts to begin to correct (some needed to increase and others to decrease). The good Dr. H is having his M-Spike checked......just to keep track of the Myeloma. We pray that it is taking a rest while all the other battles are being waged, in his body.

Needless to say, he is very weak and has begun to sleep much of the time. Just a short walk to the bathroom is tiring.

Thankfully, our daughters are now old enough that they feel they don't have to listen to me (everytime). Robbie arrived from Texas a little before 10:00 p.m., last night. How wonderful to have support - both physically and mentally. Gale will come, when Robbie has to return home. 

We are so thankful for all the calls, text messages, emails, FB postings, visits, cards, and goodies.....and especially for your concern, thoughts, and prayers.

What a journey we've been on, this past year. Just when it seemed that we had gotten over the bumps, and around the major roadblocks, it appears there's a detour..........praying that we get back on the right road.....soon!!

The knocking stopped.....and then.....

Have you ever had a car making a terrible noise.......you take it to the garage.....and NOTHING!!  And then you get back home, and it starts.......again.

That's sorta' how it can be, sometime....at our house with this thing called Multiple Myeloma and pain. Last Thursday, my honey went to the Driving Range to hit golf balls. This was his first such outing in several months. And ever since he (we) has paid the price, in pain.

Sunday was just an awful day - with regard to level of pain. Finally, around sunset (isn't that when it always gets worse) I called his Pain Management Specialist. Thank goodness, this is one of the doctors that will share his cell phone number (although this was my first call to him), and he also makes house calls!! He told me what to do to get the pain under control, and said he'd see him on Tuesday (Monday was a surgery day).

Monday turned out to be a pretty good day.....for both of us (well, if he's pain free.....I'm headache free!) Then came Tuesday and our appointment. Not that I wished my honey any pain, but wouldn't you know on a scale of 0 - 10......he was 0 that day! (Take the noisy car to the garage, and it's "knock-free", everytime!)

Anyway, things were good. Doc thought the Driving Range was an excellent idea as long as honey didn't overdo it. And, he also gave me permission to increase the dose of Dilaudid, if necessary. So, we walked away with a pat on the back, a bill, and new prescriptions. Since they are controlled substance drugs, we have to do this every three months, anyway.

And along came today. It started early this morning with pain and chills. He's usually cold, because of his anemia, but here was this knocking (pain), again! He requested "one of my little white pills" (dilaudid), which usually work their magic after about an hour. Two hours later, he was still in pain.....so I gave him another "little white pill", and then there was the headache.....so I administered two Tylenol. Finally he slept, and with sleep comes relief from pain.

He rested and slept, off and on, for most of the day....and then came late afternoon, again......and MORE pain, seemingly worse than ever before. So, out came the "little white pills", and this time I gave him two as well as a Phenergan, for nausea, which always bring blessed sleep. The pain subsided......a little.

Tomorrow, we'll go back to the good pain doctor and probably an injection of steroids. This time, though, the pain is in an area of the back where it has never been .....around the T5 and T6 vertebrae. And so I worried.....could it be pneumonia??

And, I'm concerned. There is an odor......to his breath.....that I smelled way before I knew he had cancer. I later learned that it's an indication of Renal problems. Tonight, and last night, I smelled that same odor. His eyelids are his greatest telltale sign of dehydration, and they are beginning to show those signs, even though he drinks plenty of liquids.

I called the Cancer Center "on-call" doctor and she suggested that I take him to the nearest ER to be sure he doesn't have (1) Renal failure (2) another compression fracture (3) pneumonia. If there's a choice, I guess I'll take door number 2. There's a hospital nearby.....much closer than if we were at home.......but he "assures" me that he's better. I don't want to have to make this trip ......to an unknown hospital......in the middle of the night.

This time last year, when we first received the MM diagnosis, we were making these same kind of trips to the hospital. I didn't intend to mark the milestone with "celebratory" trips, this year. I thought things were really going good at our house because the knocking stopped, and then.......

No celebrations ....just milestones

It isn't an anniversary, and it isn't a celebration ..... it's a milestone. The end of this week - Friday, to be exact, will be one year from the day that we learned that cancer had invaded our lives. Cancer. Just the mention of the word brings a shudder. Cancer. Not something that can happen in this family. Cancer. Who, us???  Cancer. Yes, us.

"Us".  Bob, or my "honey", as I call him, is the one with the cancer ....but it's really "us". As our youngest daughter so aptly stated, cancer metastasizes to the entire family, so even though my honey has the cancer, we all feel the pain.

How did this happen? Why us? Why him? Why was he "chosen" to bear this burden of Multiple Myeloma? He often asks "Why me?" And, I don't know. Why him? Why does anyone get cancer?

Things have gotten so much better over these past 12 months. For some reason, it's much easier to think of it in "months" rather than a year. And, I'm not sure why. Maybe saying "months" doesn't make it seem so long.

Like childbirth - he seems not to remember those early days when there was so much pain. And for that\ I'm thankful, for it was terrible. (Those are memories I don't think I'll ever forget.) Just a few days ago, after months of being "easy" (not much pain) he decided that he'd try the Driving Range. For several days now he has paid the price, and brought me back to those days when we were battling days of pain.

I'm such a  "things happen for a reason" and "God works in mysterious ways" type of person, so I have to think that God was trying to make us realize that we have it pretty easy, right now. Life is good. This is our "normal"...and it isn't bad. There are some who have it so much worse.

Life is good. It isn't a celebration. It's a milestone. It's cancer. We're just happy for every day.......whether it's good or bad. We've been given another day.


  

A hidden treasure in this journey.....

It has been awhile since I posted........just nothing new to report, on the homefront. I'd been thinking, for quite sometime, about writing a post on Coping, when there's nothing with which to cope. Coping when things are good .....or maybe it's just when things aren't bad.

Somehow, I was unable to get enough thoughts together to write a decent post. I got a flu shot and had no flu, but had a very "successful" cold.....and just felt miserable. Just wasn't in any mood to write anything that anyone would want to read. I knew I was getting better, when thoughts began to return to my head and were making their way to my fingers.......itching to be put into words.

My honey was not looking forward to starting his 2nd round of Revlimid/Dex. The first round made him feel absolutely terrible. He was legthargic, weak, felt bad, had no appetite, and any other adjective that I can think of. Of course, the first round started with itching and a rash .....so it wasn't a very good "first impression".

During much of his off week, he also had a cold so he didn't get too much of a break from his misery. But colds have a way of finally clearing up, and he began to feel better before it was time to begin round number two.

Monday started the 2nd round, and so far (keeping fingers crossed) there have been no side-effects this time around. In fact, he's moving better, feeling better, eating better than he has since b/c (before cancer). The Revlimid has a tendency to cause a drop in platelets and blood counts ......not the case here. His are going up!

Today, for the first time in months, we went to the Mall to do some shopping and he out-walked me.

This morning, we were sitting in the Cancer Center waiting for the results of his labs and it appears to me that instead of losing hair......his is growing! Now, my honey was his mother's son (her hair was thin, and so is his), and now it really looks like it's growing.

So, if there are no issues, it gets rid of the MM, and causes his hair to grow in the process.....I consider that an added benefit! Talk about searching for treasures - we'll take them anywhere we can find them.

A journey ends.......

When Bob was first diagnosed with Multiple Myeloma, almost one year ago (October 7 will be one year), an old friend from high school got in touch. Her husband had been living with MM for almost twelve years, They had moved from Memphis to Houston to be near his oncologist at M. D. Anderson. He was considered to be a "walking miracle", and after all those years was still doing pretty well.

She brought us great hope. It helped to hear from a positive force - someone who was a caregiver like I was about to become. And advice from someone who had been on the journey that we were about to take.

On Labor Day, her honey lost his twelve year battle against Multiple Myeloma. He was in a Nursing Home in the Houston area - a room that he shared with my friend, his wife. Not long after we spoke, she was diagnosed with incurable lung cancer which later metastasized to her brain.

And now, after only one year, my friend is in her last days.  Who knows why someone can live only one year, when another lives twelve. Maybe God thought her honey would still need her care, in heaven - or maybe God thought she couldn't live without him, here on earth. 

May you rest in peace,  Herb. And may you go in peace, when God calls for you, dear Barb.

Sadness engulfs us, but knowing that these two will no longer experience pain brings us peace.  

On the other side, of the "hole"......

Already, the rash is getting better! My honey is beginning not to look so red and blotchy, and the itching is  better. The half-life of the Revlimid is 3 - 4 hours; so this stuff should be out of his system between 5 p.m. and midnite. This just may be the "easiest" side-effect we've ever experienced. (And the one that's red and scratching says "Easy for you, maybe")!

We expected this expensive chemo to immediately put him in the "Donut Hole". For those of you still on private drug plans (not on Medicare Part D), it's time for a lesson known as "Donut Hole 101". After the honey met his deductible of $50.00, at the beginning of the year (it only took one of his drugs to meet this), he moved into Stage 2 where he paid co-pays of either $7.00 or $34.00 for generic drugs, and $70.00 for Brand drugs, and the drug plan paid the remainder. Once he had paid $2,840 in total drug costs for the year (this chart says $2,830), he moved to Stage 3 ......the Donut Hole (Coverage Gap is the actual name)! In the hole, Generic drugs are $14 and any Brand name drugs are at 100%. One remains in the hole until $4,550 in drug costs have been paid.

This morning, I went to the Pharmacy to retrieve one of his "Brand name prescriptions", expecting to pay almost $200.00. When the clerk asked for $9.35, I said "There must be some mistake......we should be paying full price for this". They laughingly told me they'd never had anybody complain that their drugs didn't cost enough.

What I hadn't realized was that, not only would the Revlimid put him in the donut hole.....it would push him right on through, because of the high cost! He's now in what's known as the "Catastrophic Coverage stage" (Stage 4) which makes his other drugs costs less than when he was in Stages 1 and 2. Who knew that the high cost of the drug might, in some way, turn out to be beneficial.

Things are looking up at this house......the rash and itch are better, so much so that he will be back swallowing those chemo capsules, tomorrow. Wish all his side-effects could be resolved this quickly, and hoping this is the only one that he has - from this drug!

It only took 3 doses.......

It only took three doses of the Revlimid  (lenalidomide), and my honey looks like someone that got into a bed of poison ivy! The itching started late Monday, though in typical Bob fashion, I wasn't aware of it until Tuesday morning. The rash didn't make its appearance until later Tuesday morning.

I first gave him Benadryl, and then I called the Cancer Center. His Onc. told me that the itching is "very rare" (not what I'd read, or heard, but he's the doctor, so I didn't disagree). He suggested that he'd have his nurse call our Pharmacy and order Atarax, for Bob. Atarax is an Antihistamine which is prescribed for itching, hives, allergies, insomnia (oh good....he sleeps most of the day, now), nausea, and anxiety (can I please take one!).

I picked up the prescription and gave him one. I understand why it's for itching.......when you're sleeping, you don't have a tendency to scratch!! The Atarax can also cause dizziness (and, it did), and can cause "reddening of the skin" (really don't need anymore of that!).

The rash appeared later, and by this morning, had taken up full residence in his body. The insides of his arms don't have "whelps" or "blotches", they are just one continuous big red "splotch". It's on his stomach and on his back. My concern was when his face and neck began to be covered, and when I read on one of the Myeloma websites that his throat could begin to close if the rash got that far!

Another call to the Cancer Center. Stop the Revlimid. After a couple of days, it should clear up, and when it does (did they say "when" or "if"?) start the Revlimid, again. It "should not" cause a rash the 2nd time, around. He doesn't feel good, and bless his heart, he certainly doesn't look his best - all red and blotchy. I hope it goes away soon; I know this is getting old for him.

Just hoping this drug is doing as much damage on the inside, to the cancer, as it's doing on the outside!

Swallow, but don't touch!!

On Friday, August 12, 2011 Bob's onc suggested that his next course of treatment would be Revlimid, an expensive chemo capsule. Revlimid is shipped to the home of the MM patient, from a pharmacy distribution center.

It took one week, and multiple phone calls, to get the drug approved and finally shipped. We were told that the drug, which had been prescribed by Bob's oncologist, had to be approved by Medicare, the FDA, and a group of doctors. It has been one week since his oncologist ordered this drug;  my husband has cancer and someone who has no knowledge of his health situation is making a decision about his medication! Needless to say, I forgot my "southern raising" and gave my "opinion". (And, I couldn't help but wonder what would transpire once the Obama Healthcare plan is in place.)

The package arrived, and upon opening, we read the warning at the top of the med pack: 'Caution - Chemotherapy. Handle with gloves.' So, he can ingest......he just shouldn't touch! (We don't put on gloves, but we do "dump" it onto a napkin....and he picks it up that way.)

I, very carefully, read the list of side-effects,  and couldn't help but wonder which one he'd be having! The Revlimid is taken daily in conjunction with 40 mg. of Dexamethasone, which is taken weekly. The Dex has already begun to cause swelling in his feet, and his hiccups are back. Revlimid can cause bone pain,  rash, blood clots, low white counts, low platelets, fatigue, and probably so many other things.  There have also been many articles on the possibility of  'secondary cancer', caused by Revlimid. I just don't let my mind go there! I think I finally have him convinced to tell me if he feels any changes, in his body.

We can deal with the side-effects, if the Revlimid can deal with the cancer!

Please let this stressful day, end!!!!!

This morning we visited (well, it wasn't really a visit.....it was an appointment)  with Bob's oncologist, Dr. H. And, as expected, my honey is going to have to have chemicals (chemo) again, to try and fight the enemy (cancer).

His M-Spike (Monoclonal Protein) is still at 0.3 m/dl, but for the first time, he has a lesion. Per his recent MRI, there is a "punched out" (hole) lesion of several centimeters in his left back hip. For those of you unfamiliar with the term lesion, it's explained as holes in the bones that look like lace, or swiss cheese. His last MRI was in December, when there were no lesions. The Myeloma is really waging war. He wasn't surprised, since he has been experiencing pain, in that area.

After reading the MRI, I realize that his back is in terrible shape, because of age and the cancer.  I try to refrain from so many "please be careful" admonitions......but I don't want him in a wheelchair. He's the "man"....he's always been the one to pick up the heavy stuff, so it's embarrassing for him to have me doing the heavy lifting.  

Dr. H suggested Revlimid, this time. Velcade has been successful but has caused neuropathy (terrible pain and tingling, in his feet), and because his M-Spike has already started to creep back up (after only a couple of months), it is now considered to be ineffective. Revlimid is a tablet, taken at home, 21 days with steroids (Dexamethasone).

It's known that Revlimid can cause (1) secondary cancers (2) nausea (3) kidney problems (4) blood problems. Knowing how Bob has reactions, to EVERYTHING, it scares me to death to have him swallow, anything new, or different!

Revlimid is Chemo - a tablet - but it can't be picked up with a prescription, at your local pharmacy. This afternoon the phone call came from the pharmacy, in Florida, that will ship the drug to us (after he's approved). It's a good thing that I don't have heart problems - his Velcade was $3,710, each week. This is much worse. I would really suggest the Customer Rep not start a conversation with "your cost will be $2,000, each month". (This wasn't how we intended to "spend" our retirement!)

There is "assistance" (the Chronic Disease Fund) to help defray the cost of this drug. It helps with the $2,000 tab, but immediately puts Bob in "the donut hole", so all of his other drugs will be at full cost, for the rest of this year.....and for as long as he's on this drug. We (Bob and I) have differences of opinions. I will do anything, ANYTHING, to keep him with me. Bob, on the other hand, does not want to leave me penniless. And, Celgene (drug company that makes Revlimid) gets rich!!

What a stressful day, and we only wanted to know what his M-Spike was and if he had to have more treatments!!!

Duct Tape, Scotch Tape, and Safety Pins.....

After a thunderstorm and overnight stop in Fort Payne, Alabama, we got the RV home from Virginia without incident. Well, not really........Bob had no problems, but we were trucking down the Interstate (I-20) and suddenly, we heard a terrible noise. It sounded as if the canopy had come loose (we knew that sound, since it had happened once in terrible South Dakota winds). Bob pulled onto the shoulder (I'm really not crazy about having to do that) and we both got out and checked thoroughly (okay, we thought we checked). The canopy was fine, and nothing else seemed to be out-of-place.

Back in the RV, and headed down I-20, the noise started again. I began searching, and finally stood up and looked down (out my window). It looked as if the front panel, over the right front tire, was going to start on a trip of its own! Now, anyone that knows me, knows I didn't calmy say "the right front panel is coming off"! (Yes, I was very animated.) Bob pulled off the Interstate, at the next exit. (Thankfully, it was an exit with a Truck Stop.) After examination, Bob discovered that the screws were coming out of the panel. We dug through the tools that we had on board, and finding nothing to fix the problem, decided that the Truck Stop might have something more. (There were lots of "No, Sarah, that won't do!) After several minutes, my honey returned with the magic "Fix All" (Duct Tape). After a few minutes, and all taped up, we were ready to go. Now, didn't we just look like the Rednecks on Vacation!!

We arrived home, without further incident. What's a trip, without a little excitement!!

We had to get back home because it was time to check and see what the Myeloma was doing!  On Monday, we went to the Cancer Center so they could get vials of my honey's blood.  After the "blood-letting" we toured all the RV Campgrounds, on the beautiful Mississippi Gulf Coast. It's time to camp closer to home, in the event my honey has to get back to to his doctor.  We never know which side-effect he's going to have, next! I did suggest to him; if I completely lose my mind, or get eaten by a big dog, DO NOT allow anyone to change any of his medications, period!

After a long day of touring, we finally decided on a spot in an RV park on the Back Bay of Biloxi. We'll be able to dip our line into the water, and we're minutes from the beautiful beaches of Mississippi. It reminded us both, of happier times (before cancer), when we camped with dear friends, in Florida.

And yes, he did remove the duct tape....and the panel is fixed! And, for the record, I'm putting safety pins and scotch tape in the tool box.

Side-effects, again.....

I ended my last blog with "don't mention trip or vacation, to me", and here I am, on the road again! And no, I'm not alone....this honey of mine, that has MM, is along (and he's even doing some of the driving!)

My cousin, Howard, who died from Colon Cancer almost 4 years ago, used to say "I ain't sick, I just got cancer". (Now, Howard was well-educated, but he loved using his southern slang to make more of an impression.) For the past few months, my honey HAS been sick (and he also has cancer). He's been nauseous, couldn't eat (and no, it WAS NOT my cooking!), and has been like someone with the flu - except no cough, cold, temp, etc.

Thankfully, I keep detailed notes, calendars, medical logs, notebooks, etc., ad nauseum! (guess it comes from my many years as a consultant).  First, we went to see the wonderful Dr. H (Bob's oncologist), and learned that it probably wasn't the cancer. (Whew!!)

On Monday, we went to see his PCP, who really looked completely disinterested at the whole situation. Bob explained what was going on (with a "few" interruptions from me.) Having referred to my trusty records, I asked if he would put my honey back on his "old" (took it for 7 years without incident) Blood Pressure medication. Humana had taken his medication off their Formulary (would not pay for it), so in May a new BP med had been prescribed.  I had done some research (I could almost hear the doctor groan), and the "possible" side-effects were exactly what Bob was experiencing. (I'm still considering renting him out as a "side-effects tester".) He agreed, but obviously thought I was wrong, because he suggested it was Bob's gallbladder, and that he should see a surgeon. He also had Bob leave a urine specimen. (Note: Other than getting him back on the BP med, and the urine sample....it was a waste of time, and $$)
 
So, on Tuesday, off we go to see the surgeon. In March, Bob had a colonoscopy, endoscopy and Hidascan (gallbladder). This surgeon had visited him in the hospital when he was experiencing, as we later learned, side-effects (there's that word, again) of Celebrex. Bob's gallbladder wasn't "emptying properly", but he didn't think that was the problem, then (or now). His exact words "I can remove it, but it probably won't fix the problem .....you'll probably still be nauseated." (Oh good, that's just what we wanted to hear.) He suggested that Bob see a Gastrointerologist, because there are "many things" (his words) that can cause nausea. When I asked "Such as?", he said "The Gastroenterologist will tell you." (Hidden answer....."I don't know") (Note: Another waste of time....and $$)

The Gastrointerologist doesn't have an appointment available until the end of August. He's sick! He's losing weight! He's nauseous! He can't eat! Are you kidding me?

My honey was feeling terrible, he was weak, and his eyes were even beginning to have that "vacant" look. He would get up in the morning, and when he got to the sofa he would lie down and go back to sleep. I was researching everywhere, and corresponding with another caregiver (in Iowa) who had some wonderful ideas, info, and suggestions. What would I do without this MM community? I was frustrated, concerned, and frightened. This was beginning to remind me of those days, before we got a MM diagnosis; when he was so sick, and I didn't know what was wrong. 

I tried to get an appointment with a Nephrologist, but learned that he needs a referral (understandable), and doesn't meet their criteria. (And, that's a good thing.....probably isn't his kidneys causing the problem).  His  GFR isn't what it should be but that, alone, doesn't mean kidney issues.

So, on Tuesday night, my honey started back on his "old" BP medication. On Wednesday, there was no instant miracle. On Thursday, he began to be a little better. Friday, he was "more" better, and Saturday morning (today), he woke up, raring to go!! 

And, this time, I said "Let's go get the RV!" It was almost as if I'd give him a shot of adrenaline. I could see it on his face....the "she knows I feel good" smile. And, before I knew, it he was taking his shower, packing his clothes and getting ready to go. Hence the reason we're on the road!

He's no longer as nauseous,his appetite is back, he's beginning to feel good.  Will this happen, again? Most certainly. Somewhere down the line, something new will be prescribed, and we'll go through another episode. It's frustrating, irritating, frightening, all of these adjective, and more, but as long as it isn't the cancer, we can deal with it, if we know what "it" is.

Strange, how something as simple as Blood Pressure medication can potentially be an issue. We see the advertisements on television, everyday, of the possible side-effects of various drugs. Bob's cancer (and his sensitive digestive system) has taught me to be very cautious, and aware, of the potential danger of every drug. At the time his Blood Pressure medication was changed I voiced my opposition, and concern, and deaf ears were turned - so I'm not saying "I told you so!" (Oh heck, yes I am!!)

My honey is feeling better - he's eating, he's not nauseous....and that's what's important. Thankfully, it isn't always the cancer......maybe it's just the side-effects, of something else.....

You want me to do what?????

Just exactly two weeks from the day we left home, we returned home. What?? Weren't you planning on staying a month?? Yes, in fact, we were.

I think my honey thought this trip would be magic. We'd take off in this rolling hotel (RV) of ours, with him at the helm (most of the time, I drive .....the car), we'd stop along the way at Rest Areas, and have breakfast or lunch.......just like we used to do.......before cancer.

He got tired, as we loaded, but I thought nothing of it. I got tired, too. He said he felt okay, and he seemed okay....and silly me....I listened, and I believed.

So, on Thursday morning  - just two weeks ago - on the road we went. He seemed okay. He looked okay. He even acted okay. The man shoulda' been an actor!

We finally arrived at our campground, near Hillsville, VA on Saturday about noon. He seemed okay. He looked okay. He acted okay.

He was tired, and he rested, and I thought nothing of it. After all, Myeloma causes fatigue, and weakness, and so many other things. And, it had been a long trip, and I was tired.

One week from the day we left home, we went on our first excursion up in the mountains. (That really was a clue that things weren't as good as he was pretending.) We didn't go to the Blue Ridge Mountains, which were to our East and South......but to the Appalachian Mountains which were back to our West. I drove. Because he tires easily, it was really just a road trip and a visual experience. We never were into hiking, so not being able to climb the mountain didn't bother me. After all, I have an excellent Treadmill, in my bedroom, and it's such a great place to hang clothes and is in air conditioning, why get all hot and sweaty, outside!

For the next few days, he sat and rested....or slept on the sofa, in the RV. And, he started doing something that he hadn't been doing. He began to ask for a pain pill when he first got up, in the morning. He finally quit, as our friends like to say, "putting on a front" and began to admit that he wasn't feeling good - and really hadn't felt good for some time (even before we left home).

I began to ask "do we need to go home, while you can still drive this thing?" (I drive cars....not RVs). So finally, on Wednesday (just one day shy of two weeks from when we left home), my honey decided that we needed to head home - so he could get back to his doctor. And, because he really was no longer able to drive the RV......bless his heart....it's still on vacation, in VA!

Was I upset? Yes, a little. But, I realized that this was something he was trying to do for me. He wanted things to be as they were ....... before cancer. But our life has changed.......nothing is the same.

We have taken three vacations in the past year. The first vacation, he got sick and we came home to a diagnosis of Multiple Myeloma. The second vacation, he got sick and we came home to see the doctor. This was the third vacation, and he got sick and had to come back to the doctor.

Please, please, please don't mention the words trip, or vacation, to me.......I'm just not sure how I might react. You know what they say, "All's well that ends well"....well, so far, these vacations haven't ended too well.

A beautiful mountain ride ended with reality.......

At 5,729 feet, Mt. Rogers is the highest point in Virginia. Yesterday, it was our mission to get there, or as close as possible. There is no road, to the summit, so close meant "visually close". We left Hillsville, headed west on Hwy. 58, and soon saw a sign stating that Bristol,  VA was only 107 miles.  We discussed that this might be a new route (in our RV) when we started back home. After many miles of highway as "crooked as a dog's hind leg", with speed limit warnings of 15 mph, there were no more discussions of trying to navigate this road in a Motorhome!

Christmas Tree farms, with acres and acres of trees that seem to cling to the mountainside, dotted the landscape.

Looking east from Sugarland Overlook
in Grayson Highlands State Park, the
valley and, in the distance, the Blue
Ridge Mountains.

We stopped at Grayson Highlands State Park which borders Mount Rogers National Recreation Area on the south. There are 9 hiking trails in Grayson as well as access to almost 3 miles of the Appalachian Trail, which runs from Georgia to Maine. 78 miles of the Appalachian Trail lies within the Mount Rogers NRA and is only 1/2 mile from the summit of the mountain.

 


The Virginia Creeper Trail,  a 34 mile hiking - biking trail converted from the Norfolk and Western Railway roadbed also traverses the Mount Rogers National Recreation Area. The trail starts in Abingdon, Virginia and ends near the North Carolina state line.

Ever so often, an old settler's cabin .....from days long past......would appear.





From the beauty of the mountains, the church steeples with the mountains as their backdrops, the creek beside the highway rushing over the rocks.......we were suddenly back to reality. The tornadoes that struck our towns in Mississippi and Alabama, in April, had made their way to the mountains of Virginia. Trees had been splintered, as if they were match sticks. Houses had been blown apart and leveled. Semi-trailers had been crumpled, as if they were toys in the hands of a child.

On one side of the mountain.....beauty, and on the other.......tragedy

A different kind of journey.....

With the Motorhome loaded and "road ready" we were both excited to get on the road, again. We left home early on Thursday July 7th (one week ago, today), headed for the mountains of Virginia,  near the Blue Ridge Parkway.  We met our friends, Sam & Ann Greco, at a Rest Area in Alabama and had our first (this trip) breakfast.

Our first night out, we stopped at beautiful DeSoto State Park just outside Fort Payne, Alabama. What a great place to camp........clean, well-lit with wide, asphalt pads under the trees, and cable tv! (Camping, at its best!). Hidden in the Alabama mountains, deep in the forest are canyons and waterfalls, beautful rock formations, hiking trails, and wildlife. As night fell, we were serenaded by cicadas, tree frogs, and somewhere in the distance, two owls called to each other across the mountain.

Fort Payne, AL Train Depot - restored

 How I would have loved to have time to wander the streets of Fort Payne, with its quaint little shops, antique stores, and the 'Alabama' museum. (My 'bucket list' just grows and grows!)  We left this beautiful park, with a promise (to ourselves) to return. How picturesque it would be, in the fall, with the mountainside bathed in shades of red, yellow, and orange.

We made our way through Chattanooga -  navigating Interstate 24, always busy, regardless of the hour. We stopped for fuel in Cleveland, TN and had our first real "irritation" of the trip. The station advertised diesel, at a pretty decent price (not as good as at home, but not bad). As we, and two other big rigs pulled into the station, everyone realized we could get in.......we just couldn't get out!! We unhooked our tow vehicle, and backed the RV out ...... but not before I entered the station and "suggested" to the clerk that they should post a warning "No Big Rigs". (He barely looked up from his newspaper.....I'm sure it wasn't the first, and won't be the last, complaint.)

We had driven under cloudy skies most of the day (a great shield from morning sun). Finally, about mid-afternoon the deluge came - slowing our travel down, considerably. With about 3 hours remaining on our trip, and our final destination in the mountains.....the decision was made to stop for a second night. We spent night number two at Rocky Top Campground near Bristol, TN. A great little RV park with such friendly hosts....too bad this wasn't our final stop!

We arrived at Lake Ridge RV Park, in southwestern Virginia near Hillsville (and there is a reason it was given that name!), about noon on Saturday. The Blue Ridge mountains, in the distance to our south and east, looked as if they had been dusted with blue powder, and then covered with a tent of dusty haze. The tall peaks rose, as if stretching for the sky and then dropped into deep valleys. I imagined dozens of hikers, heartier souls than I, climbing to the mountain tops and looking out over this valley in which we camp.

And then came the joy of trying to get our Motorhome into the reserved, tree shaded spot. (Long story - short - it didn't happen!) We unhooked our tow car, and I followed behind ..... up one hill and down another, as Bob and the RV followed the guide in the Golf Cart. In many RV parks, if it's necessary to back in.....a guide is there to assist. As the guide pointed out the spot, and Bob began to back up - I realized, as our RV exhaust and backend was digging into the dirt, the guide must have considered his job done. He remained in his Golf Cart....in front....oblivious to everything happening, in the back. I quickly parked and got out of the car.....yelling like a mad woman.  When he understood that our Motorhome wouldn't fit into the reserved spot, he decided that Bob needed to pull forward and continue down the road, to another spot. Thankfully, a bright young man came along and told him "that won't work ....there's a drop off up there!" (Obviously, this guide needs training.....bless his heart!)

We finally got parked, without assistance, but there are no trees to shade us. (And yes, I did comment that we could have stayed in our own yard if we were going to park, in the sun.) But, I was very gently reminded that we wouldn't have the Blue Ridge Mountains, as a backdrop. There are just some arguments a girl can't win!!

Bob is doing great - the exercise (climbing up and down the steps of the RV) is helping tremendously. He tires, just as he does at home .....but he knows his limits and knows when to rest (and, he has his "little white pill" for emergencies!)
More adventures to follow.....

Just two months, and three weeks.....

was how long Bob's "Near CR" lasted. There are just some things that one knows, in their 'gut', and this was one of those things. He had begun to have pains reminiscent of earlier days, and he so often felt bad. So, when I made my "executive" decision to get him back to Dr. H, ahead of his regularly scheduled appointment, it was because I felt that things just weren't right.

On Tuesday, we learned that his M-Spike has begun to creep back up. It's only 0.3, but we'd much rather it had stayed at nothing! We have a trip planned to a beautiful RV park, in the Virginia mountains, near the Blue Ridge Parkway. We're continuing with our trip plans, with Dr. H's blessings and urgings. Breathing that fresh mountain air and getting away from the humdrum of everyday life is always good for the soul, and maybe the health, too!

The timing of The Myeloma Beacon's article "Early Relapse May Be Linked To Shorter Survival In Elderly Myeloma Patients" could not have come at a worse time, for me. There are things I read, that I never tell (Bob) and this was one of those articles.

Tuesday was the "I can't believe this is happening, again" type of day. As the renowned MM Specialist stated, there is tremendous anxiety among Myeloma patients ........dreading relapse......and then, it actually happens.

We knew those cells could start to proliferate, again, we had just hoped it wouldn't happen so soon. We'll enjoy our trip, each other, and the mountains.....and when we return we'll hope that the good mountain air has taken away his need for more Chemo! (I can dream, can't I?)

Shorter Survival for Older Myeloma Patients??

Based on the treatment regimen, the following article copied in its entirety from The Myeloma Beacon , indicates that older MM patients may not fare as well if they've had an early (shorter) relapse. However, the article also states that studies are being done on younger patients. It seems to me that more testing should be done on MM patients in the 65+ age group, before any predictions are made relevant to that (our) age group.

Early Relapse May Be Linked To Shorter Survival In Elderly Myeloma Patients

According to a recent Greek study, elderly myeloma patients who relapse early after receiving therapy with novel agents have a significantly shorter overall survival time compared to patients who remain in remission longer. In addition, results showed that a poorer quality of response to treatment with novel agents is associated with early relapse in these patients.

“This study confirms other data that a [better quality of] response argues for a good outcome in patients with myeloma,” said Dr. Edward Libby from the University of New Mexico Cancer Center in Albuquerque who was not involved in the study.

However, Dr. Libby added that because the patients in the study were treated with different regimens, it is difficult to conclude why some patients did better and others did worse.

Based on their findings, the study authors recommended that elderly patients who experience an early relapse participate in clinical trials or receive additional treatment to try to improve their prognosis. They also encouraged efforts to identify patients who are at a higher risk for early relapse and to customize different treatment strategies for these patients.

Since their introduction, novel agents such as Revlimid (lenalidomide), thalidomide (Thalomid), and Velcade (bortezomib) have significantly improved treatment outcomes for elderly multiple myeloma patients compared to traditional chemotherapy.

Previous studies have shown that elderly myeloma patients treated with melphalan (Alkeran)-prednisone therapy, known as MP, along with either thalidomide or Velcade have a better quality of response compared to patients who receive MP without novel agents. All of these patients also have longer progression-free survival times, and some of them have longer overall survival times.

Another recent study has shown that the achievement of a complete response is a predictor of longer progression-free and overall survival in elderly myeloma patients who receive treatment with novel agents.
Improved treatment results with novel agents, however, have not always resulted in longer overall survival times in elderly patients.

For instance, results of a previous study indicate that thalidomide-interferon maintenance therapy following MP increases progression-free survival but not overall survival in elderly patients. Moreover, because thalidomide-interferon maintenance caused more side effects than interferon alone, the study authors stated that there was only a “limited benefit” for elderly patients to use thalidomide along with interferon as maintenance (see related Beacon news).

In order to shed light on whether quality of response is associated with progression-free survival and overall survival times in elderly patients treated with novel agents, Greek researchers analyzed medical data from 135 elderly myeloma patients treated at a medical institution in Athens.

All patients included in the study were over 65 years old. The majority of patients (84 percent) had advanced disease. All patients were ineligible for stem cell transplantation and received novel agent-based therapies. Fifty-five percent of patients received thalidomide-based regimens, 37 percent received Revlimid-based regimens, and 12 percent received Velcade-based regimens.

The researchers found that 28 percent of patients achieved a complete response, 23 percent achieved a very good partial response, and 30 percent achieved a partial response.

The researchers found that patients who achieved a complete response after initial therapy had a longer median progression-free survival time compared to patients who achieved a very good partial response or a partial response (31 months vs. 20 months and 23 months, respectively).  The same was true for overall survival (62 months vs. 53 months and 38 months).

Furthermore, the authors found that poorer quality of response increased the likelihood of early relapse, which in turn decreased overall survival time.

Whereas 21 percent and 39 percent of patients who achieved a very good partial response and a partial response, respectively, relapsed early (defined as a relapse within 12 months of completing initial treatment), three percent of patients who achieved a complete response had an early relapse.

Patients who relapsed early also had a significantly shorter overall survival time than patients who did not relapse early (15.4 months vs. 53 months).

By statistical analysis of these results, the authors determined that patients who relapsed early had over a seven-fold increase in the risk of death.

“[These findings] may argue that using our best therapies upfront to achieve a complete response is the right thing to do,” said Dr. Libby. “In many circumstances, combining new therapies early [during treatment] gives the best response.”

Thirty-nine percent of patients received a second line of therapy after they relapsed or their disease progressed.

The study authors noted, however, that secondary therapies did not improve treatment outcomes for patients who relapsed early.

“The fact that [the patients] in this study had a poor performance status overall may have affected their response and their ability to tolerate subsequent therapy,” suggested Dr. Libby.

As a follow-up to the study, Dr. Libby recommended larger studies to investigate effective therapies for elderly myeloma patients.

“Most patients with myeloma are older patients, but most studies to date have been on younger patients,” he explained.  “I think, overall, we need many more [larger] studies that focus on the elderly.”

Fair to middlin'................

The South, probably more than any other area of the country, is known for its "southernisms" ......our quaint little sayings. Some phrases sound corny, or country, or just plain red-neck to those "not from around here".

In the post office the other day, a lady was attempting to stuff a wrapped package into one of the Express Mail envelopes. She told the clerk to "mash it down" as much as he needed to. In another part of the country, you probably would have heard "press it down" or "flatten it down". (We might also say "mash the button" - instead of "push the button".)

While on our trip I saw a book, by a North Carolina author, of Southern sayings. I chuckled at the notice in the front, which stated in part that nothing from the book could be copied, or quoted. I wondered if this 'Southern belle' thought she was the only one privvy to Southern expressions. Heck, we've been saying fixin' to, over yonder, set a spell, a mess of turnips, I reckon, and many other colorful sayings all our lives.

Bob and I stopped by the Pharmacy, on our way home from Dr. H's office, on Friday. As we walked into Fred's Express, the Manager exchanged greetings with us. I asked how he was doing and his response was "Oh, fair to middlin', I guess".

As I thought about it, I realized that's probably a great way to explain how Bob is doing . He's not as likely as I am to come out with these Southern sayings, so I doubt he'll ever tell anyone "I'm fair to middlin".  (And, for those of you wondering.....it just means average, or about as good as can be expected.)

Yep, bless his heart, he is fair to middlin' !!!

A Roller Coaster of Emotions.....

Yesterday, a renowned and well-respected MM Specialist posted that most of his patients have tremendous anxiety about relapse; after the treatment ends (while in remission). He questioned how patients deal with their anxiety during this "new normal" period of their lives. He suggested exercise, meditation, massage, acupuncture, etc. rather than some type of anti-anxiety medication.

Bob tried the "anti-anxiety" medication early on, when it was decided that he was depressed. The medication that was prescribed was also supposed to help with the bone pain he was experiencing. If it helped with the pain, it wasn't enough to notice - and it seemed to do a great job of making him depressed! (Not what we were going for!!)

We are thankful that he is experiencing Near CR (Complete Response or Complete Remission) - some MM patients never do. I've thought about what will happen when the inevitable occurs.....and yes, it probably will, at some point. There is no cure, so Bob's Myeloma can come back. I've read that it's often as if one is hearing the diagnosis, again, for the first time. All those raw emotions return and must be dealt with and handled.

We've just returned home from a long (over 3,300 miles) road trip, and I think all the travelling might have taken its toll on him. He hasn't felt really well, so I rushed him off to the good Doctor H. when we got back on home territory. He's nauseous when he eats, and generally hasn't felt good. But, just like a car that's making a terrible noise - take it to the garage and the darn thing purrs like a cat! Don't you know, when Doctor H. asked him "How are you?" He perked right up, and said "I'm doing great!" And, when Doctor H asked him to get up on the examining table, he looked like he was spring-loaded!  About this time, I'm thinking this doctor is beginning to wonder what's wrong with me! (Since I was the one that made the call stating that he really needed to see the doctor ahead of his normal scheduled appointment!) His blood work looked good, so he really was doing great. The results of the M-Spike take longer, but there's no reason to believe that won't also be good.

I suggested to Doctor H. that maybe I needed to relax a little. I apologized for taking up his time, when Bob was obviously doing so well. (Couldn't he, at least, have acted like he felt bad!!) Of course, the good doctor assured me I'd done the right thing. (What else could he say?)   This "new normal" that we're now living is really hard on both of us. If he's nauseous, or tired, or feels bad - it MUST be the cancer returning. If he hurts, is it back? Is it the cancer returning? I know I've become a little (or a lot) like an old Mother Hen trying to protect her nest. And, I've learned that I need to lighten up and let go - because, when I get concerned, I make him concerned about himself. He asks "Is there something you aren't telling me?"

Late yesterday afternoon, as he was getting ready to fix our dinner (yes, he's doing some of the cooking again!), he suddenly let out a sound that I knew meant pain. I rushed to the kitchen to check on him, and he asked for his "white pill" (Dilaudid). He was in a great deal of pain, in his back, and I was concerned. The "white pill" finally did what it was supposed to do, and the pain subsided. This was the first back pain that he had experienced, since the nerve dennervation (burning).

Today, after a few trips in and out of the house, he was winded and needed to rest, and there was pain;  again, the "white pill" was required.  After awhile the pain subsided, and he felt better. (And, so did I!)

Along with Near CR comes a respite from treatments, but I think I anticipated that it would also mean a respite from pain, feeling bad, and being tired. It would mean that life would be back to normal.....but I quickly learned that it only means we live a different kind of normal.  Our "new normal" is nothing like the "old normal". Life, as we once knew it, has changed considerably.

The renowned MM Specialist is correct - there is anxiety about relapse. It's there .......in the back of our minds, and it hangs over us like dark clouds on a rainy day. It isn't as if we dwell on relapse - actually, we try to forget ......we try to forget that MM has invaded our lives and is now a part of our everyday life. We try to live "normally" - or as normal as possible. Many have lived with this disease, for years, and have been in Near CR, CR, VGPR, etc., so no one knows how long this will last.

Call it anxiety, call it fear, call it reality - or call it a miracle that he is in Near CR ............because many never are. We will enjoy this time of "new normal" or maybe it should be "near normal".