Thursday, March 31, 2011

Testing for side-effects???

I think I may just "hire Bob out" to some pharmaceutical company as a side-effects tester! I have learned, among other things, if a drug has side-effects......he's gonna' have them. Not all of them, but one or two, anyway......and usually, not the "common" ones.

It's so disconcerting to have him experience the side-effects, for which he was given the drug in the first place!

We're back in the hospital so they can attempt to find the reason for his stomach pain and nausea. With all the testing that was done, in Dallas, (almost every inch of his body) in preparation for the Stem Cell Transplant (which may never happen), and all the testing that has been done here - you'd think there was an answer. Not so!

We know what it isn't .... we just don't know what it is! We're happy that it appears to be nothing serious. Why is it then that he still hurts, and is still nauseous? Is it something that is just going to have to "run its course"? Should he be expected just to "deal with it"?

He's being given drugs, both orally and in his IV, to try and fix the problem. Protonix for the acid reflux, and Carafate to coat the lining of his stomach. And yes, they also have side-effects! So, once he's over this - what will happen next!!!

On a happy note, we haven't had time to worry about Multiple Myeloma. It sits quietly, on the sidelines of our lives, as we deal with other - though painful - mundane things. And, we look forward to the day when we can get back onto that porch, and into those rocking chairs!!

Wonder how Pharmaceutical companies really do test for side-effects?????   Hmmmmm.......

Sunday, March 27, 2011

Why we blog.....

This morning, another MM caregiver, who writes about her husband, his disease, and the rest of her life - shared that her blog views has reached the 100,000 mark! (And, I am happy that I'm now over the 3,000 mark!)

I started blogging when we traveled to Europe - sharing pictures and stories of our trip in our "Gorrell's Tour of Europe". Then, when we returned home, I realized that I missed writing. I began to write my "From the Front Porch". When we started out in our Motor Home, planning on seeing much of our US, I wrote about  "This Beautiful Land". Little did I know that blog wouldn't go far and would be replaced by another blog; this one.

I write about Bob's Multiple Myeloma, to help inform others - often in detail - about what we go through on a daily basis. I've shared my innermost thoughts and fears. Our life has become an open book. If it helps someone else; it is accomplishing that for which I write.

We write because we care. We write because we're afraid. We write because we've learned, and we're continuing to learn. We write because we're becoming informed, and we want others to also be informed. We write to share our experiences - because it helps to know that we're walking in the path where others have walked, and where others will walk.

I remember the day I sat and wrote "It's Okay To Cry". I had to stop feeling guilty because I couldn't stop crying ....and putting it on paper, was the only way I knew how to deal with this. People were seeing me cry, so putting it in a blog, for the world to see, didn't really matter. I wanted others to know really is okay to cry. There are those who can hide their tears, I'm just not one of those people.

My blog may never reach 100,000 - but if it helps even one person it has accomplished what I set out to do.
Thanks for reading....and thanks for the comments. We love to hear back from you!!

Thursday, March 24, 2011

Qualifications of a Caregiver.....Revised

Believers think that everything that happens is according to God’s Plan and God’s Will. Everything happens in His time, not ours……..whether it’s good or bad. In an earlier blog posting, I admitted that I sometimes (maybe often) question – wonder - why Bob/we were “chosen” for this journey.

On Thursday morning, he dozed as we drove towards home from his appointment in Hattiesburg. I was left to my own thoughts. Once again, I begin to wonder "Why Us"?

Research has no answer about what causes Multiple Myeloma. Several possibilities have been suggested: pesticides, herbicides, wood dust, chemicals, etc. – but nothing definitive. Science knows that cancer doesn’t just “happen” – there must be an answer……..

Everyone knows that Caregivers must be compassionate, kind, loving, caring, have wisdom, an inquisitive nature, strength, ability, agility, and patience – as well as dozens of other characteristics.

God looked down and thought “This couple will be the next to take this journey, because she still needs to learn”.

He said “She has compassion, and she’s kind, loving and caring. There’s nothing that she wouldn’t do for her family, or others”

He said “She has wisdom. She will know what should be done, and when to do it. She’ll be able to manage his care.”

He said “She’s inquisitive. She’ll know to ask questions, and she’ll research and look for answers.”

He said “She has strength, both mental and physical. She can endure; she has great staying power and coping skills. She’ll be able to withstand the stress of this situation, without the need for much rest.”

He said “She has the ability to deal with many situations. She’ll have her moments of desperation, and she’ll cry, but she won’t fall apart.”
He said “She will know that it’s important to make the right decisions, when he can’t, for his care.”

He said “She has patience and understanding. When he hurts she will hurt with him, and when he cries – she, too, will cry. He will know that she understands how he feels.”

He said “She has courage. She will be able to help him fight this battle.”

He said “She has friends and family, for support. She will need those.”

He said “She understands the Power of Prayer. She will pray for him both day and night. She will pray with her words, and with her unspoken thoughts.”

He said “But she is missing one important qualification. She is missing Acceptance. She will not be able to accept this path that I have chosen for them.  She must learn this, and for this reason, they must make this journey.”

And, I have not yet mastered this!  A friend of another Multiple Myeloma caregiver posted on Facebook “When God calls you, he equips you”. I think that’s very true, for I’ve noticed as the weeks and months grow, so do my “qualifications”. Maybe someday, I’ll master  Acceptance……just not yet.

Wouldn’t it be great if it were as easy as this to find the answer?  Researchers could stop looking for the reason for cancer. The answer would lie in the weakness that exists in the Caregiver. Find the weakness, create a vaccine and cancer, or disease, would be cured – no more suffering!

These "qualifications" apply to all who find themselves caring for a loved one - with any kind of cancer, or any disease. We aren't necessarily born with these, but we learn as we go along. We deal with what we must - everyday.    

Wednesday, March 23, 2011

Zippity Doo Dah....Zippity Aye......

My, oh my, what a wonderful looks like this is going to be!!

Everyone knows the story of this journey.....the trip we never expected to take, never dreamed we'd have to take.....but are on. Some say it's God's Will, and I'm sure it is (although, I've yet to understand why). For some reason, our Higher Power knew that we could withstand the hardships that the journey would exact upon us. Knew that we were strong enough to undergo whatever, whenever. There are days, though, that I question the wisdom of God's Plan (oops, sorry God!!).

This road trip has had more bumps and obstacles - if we could turn around.........boy, would we!! At every bend in the road, Bob has experienced a problem. Surgery for an abscess, in his groin, made worse by his weakened immune system which caused an infection. Back pain that was excruciating, seemed uncontrollable and unrelenting and caused multiple trips to the ER.  A C. Diff infection that manifested itself during his Apheresis. And, last.....but certainly not least.....the damage to his stomach caused by Celebrex. The stomach pains ran a close second to the pain he once experienced, in his back. Finally, I think the road is clear!
  1. The abscess and  the infection was cleared up.
  2. The pain, in his back now under control, by a wonderful Pain Management Doctor. He's now on very little pain medication.
  3. The C. Diff infection - cleared up.
  4. Celebrex - in the trash can!! And, stomach is beginning to feel better.
Amazingly enough, the Multiple Myeloma has been the least of our worries! (No, I didn't forget that if he didn't have the MM he might not have had the other things.)

It was wonderful this morning, to have him request food and tell me he's starting to feel better. I had the inclination to "pinch" myself be sure I was awake and hearing him correctly.

I've learned so much on this journey, and as I often say, things I could have lived a lifetime without knowing. I'm sure other caregivers of MM patients feel the same as I. We do what we do out of care, and concern, and love.  We arm ourselves with the latest information, and we share our knowledge with each other. Little did I know, six months ago, that I'd be a member of such an "elite" group; friends in my same situation all over these United States. When I have my moments of darkness there's always someone with words of encouragement.

Still not sure why we were "chosen" for this journey, and maybe I'll never know. And, today I'm not going to waste time wondering about it......

Yep, I think it's gonna' be a wonderful "porch sitting" day.....

     Even at dusk, or after dark, on warm nights.....this is such a comforting place to be. The sounds of the
     cicadas, the coyotes calling to each other in the woods, the wind brushing the tops of the tall pines,
     can all make us forget that our life isn't quite "normal".   

Tuesday, March 22, 2011

Cycle Two, Round One......

Sounds a lot like a boxing match, doesn't it!! And, we're in a fight.....for Bob's life.....

Had things gone as planned, right now he would probably be experiencing the worst days of the SCT. Because of the C. Diff infection, that phase had to be postponed. God often works in mysterious ways! (Meaning, if we were heading in the wrong direction, He could give us cause to rethink our decision.)

After a two month respite, Bob returned to the Cancer Center this morning to begin another round of Chemo. For now, he'll be back on Velcade/Dex. The Velcade tends to cause some neuropathy, in his legs, and the Dex (Dexamethasone) sends his Blood Glucose soaring. We have "drugs" for the neuropathy, and insulin for the Blood Glucose. His lab numbers still look pretty good. As usual, he has some low and some high - but nothing major.

We met with his PCP, after his Chemo treatment, and received acknowledgment that we had made the right decision in discontinuing the Celebrex. Dr J. prescribed an anatacid to be taken daily, to try and rescue the stomach from the damage caused by the Celebrex.

I called Pfizer, on Monday, to learn how long it would take Celebrex to get out of Bob's system. I was told 3 days. It's amazing how many law suits are in process, and how many $$$ Pfizer has paid, due to Celebrex wrongful death suits. And it was amazing at the end of the call, the Pfizer rep wanted to know if I would like to have some information mailed to me, about Celebrex. Yes, of course I would!! Not!

Dr. J. said that the Celebrex was already "out of his system", but it would take longer for damage recovery. I'm sure it may be a great drug, for some ....but it certainly didn't work for us.

I'm just waiting for the morning when he wakes up and says "I feel good....I'm hungry". Then, I'll know his tummy is all better.

My advice to any caregiver is to pay attention to the drugs that are prescribed for your patient (or even for yourself). Just because a doctor says you need them; doesn't mean they'll work for you. Stay aware - manage your own care!

Sunday, March 20, 2011

Drugs and Reactions.....

As Bob's caregiver, it's not only my responsibility to take care of him ....but to keep up with his medications. I keep an updated list of all his medications, date they were first prescribed, dosage, etc. I keep extra copies so his doctor's records are always up-to-date. And, it's a great referral tool for me.

Because he's also on some medications for pain, I keep a chart of those - listing the drug, the date and I record the time he took it. We have begun to be able to cut the dosage on some of the pain meds, so this chart isn't as important as it once was.

We have jokingly said if a drug has a side-effect, he will be affected. And, I've commented that when new drugs are prescribed, I should read the list of side-effects so I know beforehand what to expect.

For the past couple of months, he has felt worse and worse with almost flu-like symptoms. And, he's gotten to the point where food actually makes him nauseous. Before giving him food, I give him a nausea pill - which may or may not help. His tummy is tender, and hurts when he eats.

His lab results from his blood work last week were good. So what is causing the problem?

Tonight, I pulled out the drug list, and the only new drug was Celebrex - prescribed on 1/26/11. About the same time that his problem began. Celebrex, an anti-inflammatory also used for bone or joint pain, had been prescribed after one of his hospital stays because of his intense back pain. I immediately began to search online for side-effects, which included:
  • Burning in chest or stomach
  • Nausea
  • Indigestion
  • Decreased appetite
  • Flu-like symptoms
  • Difficulty sleeping
  • Chills
  • Stomach tenderness
  • Stroke
  • Heart Attack
About the only symptom he hasn't had are stroke or heart attack! On one website, there was a note that "for some patients, the benefits outweigh the possibility of a side-effect". And, on another there was mention that the drug should not be given long-term. He's been taking it for almost two months.....what is considered long term? And, did the doctor that prescribed this drug know this?

I had learned another important lesson, unfortunately at his expense. In the future, I WOULD check the side-effects.

Tomorrow is a new day - no more Celebrex! Hoping that it won't take too many days to get out of his system, and praying that this is the culprit causing the problem!

God bless the moon.....

Last night as I sat on our porch, with camera in hand, staring up at the "Supermoon",  the old childhood rhyme seemed to sing in my head......

"I see the Moon
The Moon sees me
God bless the Moon
And God bless me".....and mine.....

For some reason today I've had one of those "down" days, and I'm not quite sure why. This day is not more unusual, or more different, from any other day. It's a quiet day, at our house. Bob lies on the sofa, as he does many days, intermittenly sleeping and waking.

Next Tuesday, after Chemo, he has an appointment with his PCP to try and determine what's going on with the rest of his body. He has no appetite and food makes him nauseous, so I've begun to precede every meal with either Phenergan or Ativan. The Ativan seems to work best, but either drug makes him sleepy. I'm also going to request that he be referred to a Physical Therapist. He was in pain for so long, and unable to move because of the pain, he's no longer limber - walking is a pain, so he shies away from it.

He had a couple of good days this past week, and I'm always so thankful when those come around. I'm not sure where the "feeling bad" days come from, but if they're interspersed with one or two good ones - I can deal with one or two bad ones! His blood work, this past week, was good so I try not to worry that it's the Myeloma.

I've spent quite a lot of time reading the blogs of other MM caregivers, like me. I realize that, in spite of the fact that my honey has cancer - we're still lucky. Lucky??? We've gotten his pain under control. He hasn't had Renal Failure. He's still with us. There's just something in his body that needs to be "tweaked". Maybe we'll find out, this next week, what that "something" is.

Last night, as I looked up at the moon - this bright moon that made my country yard look like it was dusk instead of almost midnite - I thought about the childhood rhyme. "I see the Moon, the Moon sees me, God bless the Moon, and God bless me". When we were kids we also talked about the "Man in the Moon", and we wondered if there were people on the Moon.

Today, I wonder if there is life on other planets and if so, do they also have the diseases we have? Do they have cancer?  Do they have Multiple Myeloma? Have they found a cure for cancer? That's what I'd want to know, if there's life out there. That's would be my question.

So, I do want God to bless the Moon .....just in case!! And, I ask that he continue to bless us, everyone!

(And this is why I's my "antidepressant drug" Prozac, my Cymbalta, my whatever! By the time I finish putting it on paper.....I've forgotten that I was down in the dumps. Besides, I don't have time to be depressed!)

Thursday, March 17, 2011

Life is all about choices.....

Life, in general, is about choices..........what to eat, what to wear, where to go, what to do????? We met with Bob's oncologist on Tuesday to discuss his options if he chooses not to proceed with the Stem Cell Transplant.

The C. Diff infection has really taken its toll, and because of the infection, the Stem Cell Transplant scheduled to begin March 14 (this week) had to be postponed.

While in Dallas, we were told by the MM Specialist that Bob would either have to start the SCT process again, by April 1, or go back on Chemo. Because he isn't strong enough to endure the rigors of the SCT, at this time, he'll start another round of Chemo next Tuesday. His numbers are still good, and his oncologist doesn't want the MM to get out-of-hand.

His Stem Cells are frozen - safe and sound at Carter Blood Center, in Dallas. Whenever he's ready, they'll be ready. It's his decision, his choice. If he chooses not to have the transplant, there are still several chemo options available.

Life is all about choices.....

Saturday, March 12, 2011

Back home in Mississippi...

"Enjoy the little things in life, for one day, you’ll look back and realize they were the big things”

I was extremely thankful to have our son-in-law, Chris, drive us back home, from Dallas. Bob had been so sick, while in Zale-Lipshy Hospital, I was concerned about his being able to withstand the long drive with just the two of us. Maybe it was just the fact that we were headed home, but he seemed to feel better than he had, in days. He talked about playing golf, again and about traveling when he got strong enough. I sat, in the backseat, and listened to the positive conversation.

He wakes up feeling bad, but as the day wears on he seems to get better - then nightfall comes and the yucky feeling returns. His appetite seems to be better, but some of his pain has returned. Once, we were able to "blame" the yucky feeling, and the pain, on the chemo .....but it has been almost two months since his last treatment. I search for answers for the reason he feels bad, or hurts, and I begin to wonder if the Myeloma has already begun to creep back. His M-Spike, when we left Dallas, was 0.1 (really good).....but the Myeloma in his Bone Marrow was still at 15% (not so good).

Next week, we meet with his oncologist to learn what his options will be if he decides against the Stem Cell Transplant. We have great support from family and friends, but the decision is his to make. The journey won't be easy, regardless of the path he decides to take.

I have to admit, I still have those moments of "I can't believe this is happening to us". I've made it through most of the 5 Steps, with the exception of "Acceptance". It's hard to "accept" that my honey has cancer. I hate to even say the word, but I try to remain strong and keep a positive attitude. When he's down, I have to have the strength to pick him up ..... mentally.

Lucky for me - for both of us - I'm well and have no maladies. I'm so excited to be 70 years of age (and, I have a hard time "accepting" that I'm 70!) and still take no medications. Actually, I don't have anymore room on my "pharmacy counter" for meds for me!

Cancer metastasizes to the entire family. It affects everyone in some way, and until you have walked in the shoes of the patient, or the caregiver, or other members of the family, it's impossible to understand. It's just common nature for well-meaning outsiders to want to give advice. Bob has heard "you need to walk more", or "you need to eat more", or "you really need to have a positive attitude"; as well as a dozen other "you need to...". He's such a nice guy, in the past he has smiled and nodded. Lately, he's begun to say "until you've walked in my shoes - you don't know how I feel." I consider that as having spunk.....and I'm glad he's got it!!

Yes, we're back home in the Magnolia State where our days are beginning to be sunny. Just good "porch sitting" weather. It's great to sit on the front porch and watch the birds flit around the feeder as we listen to the wind in the tops of the tall pines. We await the return of the hummingbirds, and we're happy that we're back home......and have another day.

Friday, March 4, 2011

Whoever heard of C.Diff??

It's Thursday night, the Stem Cell Collection process is complete, and I'm still looking at the same Dallas skyline - meaning we're still in the hospital.

Bob's pain, in his abdomen continued to worsen and late yesterday (Wednesday) we were told that he had an infection in his intestines. The culprit is C.diff (Clostridium difficile). Because we are on the transplant floor, and the infection usually attacks people with compromised immune systems; everyone entering Bob's room must wear gowns and gloves. So now, the nurses just love (not) having to come into his room. Everytime I touch him, I must wash my hands - and no eating or drinking behind him.

It causes flu-like symptoms; cramping, nausea, vomiting, dehydration, weakness, fatigue, etc.  Since Bob has had some of these symptoms for quite awhile, I can't help but wonder how long it has been in his system, undetected. It does not appear in blood tests, and is only diagnosed with stool samples.

Antibiotic usage is usually the initial cause of this disease, and antibiotics are usually the cause of recurrent cases (it can return). But, it takes a powerful antibiotic to treat it!! Only soap and water, for hand washing, are effective - it is resistant to the alcohol based hand cleaners.

He has now had 4 doses of Flagyl and is beginning to show some improvement.

The Stem Cell Transplant, scheduled to begin March 14, has now been postponed because of the infection, as well as Bob's weakened condition. He needs time to recover - Phase 4 won't be a picnic!!

Thursday, March 3, 2011

Phase Three of this Journey ends.....

Written Tuesday night.......

I sit in Bob’s hospital room, looking out the window at the beautiful Dallas skyline, wishing we were here for more pleasant reasons.
The Bank of America building, also known to locals as "The Jolly Green Giant" stands tall above all the other buildings, outlined in green flourescent lights.

We’re very thankful to be in a wonderful facility, with great nurses who are experienced not only with his disease, but with the treatments as well as the side effects.

Monday morning started with outpatient surgery to implant the TriFusion Catheter into his right upper chest. The three lines are used during the Aphresis procedure to collect the stem cells, and circulate his blood back into his body. It will also be used during the Stem Cell Transplant to transfuse his cells, as well as for any blood transfusions or platelets that may be needed.

He didn't feel well before, or after, the surgery .....but that was nothing new. He had begun to have no appetite and just generally felt awful.

Bob had a late appointment on Monday afternoon, at the Bone Marrow Transplant Clinic, for his injection of 960 micrograms of Neupogen and 21.6 mg of Mozobil (a drug used to mobilize the Stem Cells). The appointment was late because the Stem Cell collection must begin within a specified window of time after the Mozobil injection.

Side effects for the Mozobil were listed as:
·      allergic reactions like skin rash, itching or hives, swelling of the face, lips, or       tongue
·      abdominal pain and/or shoulder pain
·      feeling faint or lightheaded, falls
·      irritation or pain at the site where injected
·      unusual bleeding or bruising
·      diarrhea
·      gas
·      nausea
·      vomiting

Between 5:30 and 6:00 p.m., the side effects made their appearance. The abdominal pain he was experiencing was like nothing that he had ever had before. He began vomiting, which he had never done. Both became so violent; the oncologist suggested we get him to the ER at St. Paul Hospital. The Neupogen injections had caused pain in his back and chest, but there had never been stomach pains or vomiting.
After xrays and CT Scans of his abdomen, and chest, to assure that there was nothing else going on, in the early hours of Tuesday morning, he was admitted.  About 8 a.m., I learned that he was not in the “right” hospital.  The Stem Cell collection (Apheresis) is normally done on an out-patient basis, in the Bone Marrow Transplant Clinic, but because of Bob’s situation it would have to take place in the hospital. Stem Cell collections are done at Zale-Lipshy, and he was at St. Paul, and that “window of time” that we had talked about was fast disappearing.

By some miracle, things moved very quickly thanks to the brilliant work of a young lady I’ve come to admire very much. Christen Bennett, the Transplant Coordinator, waved her magic wand and before we knew it, Bob was being transported to the right hospital. By the time I got the car parked and located his room on the transplant floor,  nurses were readying him to be hooked up to the Apheresis Machine.

Betty, the representative from Carter Blood Center, had the machine (shown above) set up and ready to go. Two sets of lines were attached to two of the channels of Bob's new TriFusion Catheter. One set of lines withdrew blood from his body and sent it to the Apheresis Machine, and the other set of lines returned the unused components back to the body.  The sterile tubing and needles are used only once and then discarded.Over the six hour period, all of his blood circulated through the machine four or five times (15 to 20 liters) attempting to collect 10 million Stem Cells! We had been told that, because blood thinner is added to the Apheresis Machine to prevent the blood from clotting, when it was returned to Bob's body, there could be pain. And, because calcium is lost during the process, it is normally replaced intravenously. His calcium was high enough that he didn't need an injection (maybe we have his chocolate ice cream diet to thank for this!) Some other side effects that we had been told to expect, didn't happen. Was this the secret? Expect the worst, and it won't happen!!
Blood work acceptable ranges vary from lab to lab. The range for WBC (White Blood Count) is usually in the 4.5 - 10.00 range. As Bob's Stem Cells were being collected, we learned that the Neupogen and Mozobil really had done their job .....his WBC was 65! We were complaining about pain, and they were working overtime!

If you aren't the patient, lying in the bed, the Apheresis procedure is interesting. The blood components are pulled from the patient and deposited into a container in the bottom of the machine which uses a centrifuge to separate and collect the stem cells. As the separation takes place, the blood is routed to a collection bag (shown left).

The yellow liquid, on top, is plasma which is mainly water. The stem cells are shown at the bottom.

And, this is what 6.18 million cells look like!! Bob's total for the two day period (Tuesday and Wednesday) was 9.38 million cells - not the 10 million that was desired, but enough for a Stem Cell Transplant.

The cells will be stored (frozen) at Carter Blood Center until they are ready for use.