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.......

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: 

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.

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!