It has been 48 hours since Bob's first injection on Friday morning, and he is experiencing very little discomfort. I've only had to pull out the "break-through" drugs once or twice! He has no steroids
in his body, other than the ones injected into his spine, so we know we're on the verge of success!
It would be unreasonable to think he would have no pain. At our age, these old bones are just going to hurt! Add the effects of Multiple Myeloma on the bones, plus the side effects of Chemo and other medications, and it becomes like the never-ending pain from an abscessed tooth.
I can now vehemently disagree with the "on-call" oncologist. The one that told us "He has Multiple Myeloma - this is the way it's going to be." I'm seeing that it doesn't have to be "this way". This is the very reason that patients, and caregivers, have to be aware of what's available and manage their own care. As was pointed out by Dr. H., a Myeloma Specialist in Ohio, there are too many options available. Admittedly, we had tried several that weren't working, and I have leftover drugs to prove it! Finally, after many drugs had been tried without success, I requested a Pain Management Specialist. Had we done that sooner, rather than later, we might have avoided many nights of pain and anguish, and trips to the ER!
How happy I am that we won't be having to make those late night trips again anytime soon. It seems that unrelenting, uncontrollable pain has a built-in clock and knows when night time arrives. I'm tired of having ER doctors, unaware of the pains of Multiple Myeloma, treating us as if we were just there for another "fix". Amazing that medical schools don't have a course on empathy or bedside manner!
Just the fact that he has cancer is nerve-wracking without having the added stress of dealing with excruciating pain and the complications. We work at staying positive and having a "mind over matter" attitude, and it becomes much easier when we only need to focus on the cancer and nothing else.
Injection number two will occur on Wednesday, and he could be pain-free for as much as twelve to eighteen months. Hopefully, "this is the way it's going to be"!!
Sunday, January 30, 2011
Thursday, January 27, 2011
Home again, Home again....
After almost one week of taking up space in a hospital room, we're back home. I realized last night that I felt a little overwhelmed with all the drugs - possibly because we'd added five (5) new prescriptions to our stash. It's beginning to look like I'm trying to set up my own pharmacy! We've also begun to experience the expense of cancer, with two prescriptions not covered by insurance. When (and if) the PMS procedures work, these two prescriptions will GO AWAY!!
Our first night back home was a good one, and Bob was able to sleep almost the whole night through (which means that I also slept almost the whole night!)
Tomorrow, we go back to Hattiesburg for the first injection procedure on his Facet Joints. Please keep both the specialist, and Bob, in your prayers. And, please remember to pray for our FB friend, Robert Thornton. Robert has been living with MM for several years, and isn't doing too well these days. He has been such a great source of information, and strength, for us .....and this horrible cancer is taking a toll on his body.
Our first night back home was a good one, and Bob was able to sleep almost the whole night through (which means that I also slept almost the whole night!)
Tomorrow, we go back to Hattiesburg for the first injection procedure on his Facet Joints. Please keep both the specialist, and Bob, in your prayers. And, please remember to pray for our FB friend, Robert Thornton. Robert has been living with MM for several years, and isn't doing too well these days. He has been such a great source of information, and strength, for us .....and this horrible cancer is taking a toll on his body.
Tuesday, January 25, 2011
Last Chemo treatment.....
Daughter Gale arrived on Friday night, glad to be back in the south, from a cold and snowy PA. Thankfully, she was able to come to our rescue and relieve her sister, Robbie, who had spent a week doing "everything duty". We feel so blessed that they, with families of their own, are willing and anxious to be here when we need them - almost at a moment's notice.
We have really become "nesters" in Bob's 6th floor hospital room. We've settled in as if we think we might stay - probably because I've declared that I can't take him home until his pain is under control. We aren't asking for pain free days, we know that isn't realistic, but we would like for the pain to be at a manageable level. And, to me, a manageable level means no late night ER runs!
After a couple of failed experiments, the new PMS (Pain Management Specialist) has listened to our "the only thing that seems to work is the steroids", and has prescribed the Medrol pack. He is taking 8 mg. of Exalgo (the expensive, insurance doesn't cover, drug) twice daily, 2 mg. of Zanaflex (muscle relaxer) at 4 hour intervals PRN, 4 mg. of Delaudid at 4 hour intervals PRN, and the real lifesaver - the Medrol pack.
These drugs are supposed to get him to Friday (can't do it sooner because he has to be off Plavix for 5 days), when the first Facet Joint injections will be made. He (PMS) is very optimistic that Bob will receive instant relief. I'm also working on trying to be optimistic.
The PMS looked at the new (just had it about two weeks) back brace and declared that it was all wrong! He sent me to Lowe's (!!!) to pick up a $14.99 support belt. Wouldn't it be great if there was one doctor to coordinate all this stuff - sorta' like a Project Manager on a job!
We were told today that his M-Spike has plateaued at 0.3, and probably will not go any lower without a Stem Cell Transplant. Without a SCT, he would have to be on Chemo forever. Cycle number 5, just completed, was his last Chemo treatment. When his pain is under control we'll head for Dallas to the Bone Marrow Transplant Center - possibly within a couple of weeks.
There are nerve wracking days ahead - days that we really need your continued prayers and support. Please pray that the procedure to control the pain is successful. We had almost decided against a SCT, but with Bob's M-Spike plateauting, that choice no longer belongs to us. Please pray that he will be a candidate.
And again, how very grateful we are for each and every day - especially those with little pain!!
We have really become "nesters" in Bob's 6th floor hospital room. We've settled in as if we think we might stay - probably because I've declared that I can't take him home until his pain is under control. We aren't asking for pain free days, we know that isn't realistic, but we would like for the pain to be at a manageable level. And, to me, a manageable level means no late night ER runs!
After a couple of failed experiments, the new PMS (Pain Management Specialist) has listened to our "the only thing that seems to work is the steroids", and has prescribed the Medrol pack. He is taking 8 mg. of Exalgo (the expensive, insurance doesn't cover, drug) twice daily, 2 mg. of Zanaflex (muscle relaxer) at 4 hour intervals PRN, 4 mg. of Delaudid at 4 hour intervals PRN, and the real lifesaver - the Medrol pack.
These drugs are supposed to get him to Friday (can't do it sooner because he has to be off Plavix for 5 days), when the first Facet Joint injections will be made. He (PMS) is very optimistic that Bob will receive instant relief. I'm also working on trying to be optimistic.
The PMS looked at the new (just had it about two weeks) back brace and declared that it was all wrong! He sent me to Lowe's (!!!) to pick up a $14.99 support belt. Wouldn't it be great if there was one doctor to coordinate all this stuff - sorta' like a Project Manager on a job!
We were told today that his M-Spike has plateaued at 0.3, and probably will not go any lower without a Stem Cell Transplant. Without a SCT, he would have to be on Chemo forever. Cycle number 5, just completed, was his last Chemo treatment. When his pain is under control we'll head for Dallas to the Bone Marrow Transplant Center - possibly within a couple of weeks.
There are nerve wracking days ahead - days that we really need your continued prayers and support. Please pray that the procedure to control the pain is successful. We had almost decided against a SCT, but with Bob's M-Spike plateauting, that choice no longer belongs to us. Please pray that he will be a candidate.
And again, how very grateful we are for each and every day - especially those with little pain!!
Sunday, January 23, 2011
The Final Journey.....
Tonight, I sit beside Bob's bed as he sleeps, and I hear the voices emanating from the hall outside our room. I don't know the young man, aged 39, that is in the end-of-life process, but family and friends have gathered as his time seems to be nearing the end. I've uttered words of comfort, if there are any, to his parents, and I've shed my own tears - maybe because we are also living with cancer. I cannot imagine, as his father says, losing a child - especially one with so many years left to live.
I've seen his young son and daughter as they've paced up and down the hall, on their way to their father's room. He has been in the hospital since Christmas Day, and has been unresponsive since mid week. All their lives have been placed on hold. As our daughter Robbie has said, "Cancer seems to metastasize to the entire family."
There's a sort of unspoken bond among the people on this 6th floor, for so often the stories that come from these rooms don't have a happy ending, in this life.
During our first trip to the hospital, when Bob had just been diagnosed with cancer, I met this young man as he and his wife walked "around the block". They stopped outside Bob's room, and we visited. He had only recently been diagnosed with cancer in his esophagus, and because of a misdiagnosis, it had been allowed to spread to other areas of his body. He was thin and gaunt, and his prognosis was grim.
How ironic that he would be there and we would meet on our first trip to the oncology floor, and we would be there on his last trip. Surely there was a hidden message somewhere in this sadness.
I didn't even know the name of this young man that was about to embark on his final journey out of this life, but I knew that even though this family had a few months to deal with his impending death - it would never be enough. I could feel their pain. I knew they had lumps in their throats that wouldn't go away. I knew they cried at night, in their bed. I knew they cried, as they showered and the water washed over them. I knew they must have asked "Why us? Why him?" I could feel their anguish, and even though I didn't know him, I knew their pain and their fear.
And I knew that so often, a trip to this floor is the first leg of the final journey...........
I've seen his young son and daughter as they've paced up and down the hall, on their way to their father's room. He has been in the hospital since Christmas Day, and has been unresponsive since mid week. All their lives have been placed on hold. As our daughter Robbie has said, "Cancer seems to metastasize to the entire family."
There's a sort of unspoken bond among the people on this 6th floor, for so often the stories that come from these rooms don't have a happy ending, in this life.
During our first trip to the hospital, when Bob had just been diagnosed with cancer, I met this young man as he and his wife walked "around the block". They stopped outside Bob's room, and we visited. He had only recently been diagnosed with cancer in his esophagus, and because of a misdiagnosis, it had been allowed to spread to other areas of his body. He was thin and gaunt, and his prognosis was grim.
How ironic that he would be there and we would meet on our first trip to the oncology floor, and we would be there on his last trip. Surely there was a hidden message somewhere in this sadness.
I didn't even know the name of this young man that was about to embark on his final journey out of this life, but I knew that even though this family had a few months to deal with his impending death - it would never be enough. I could feel their pain. I knew they had lumps in their throats that wouldn't go away. I knew they cried at night, in their bed. I knew they cried, as they showered and the water washed over them. I knew they must have asked "Why us? Why him?" I could feel their anguish, and even though I didn't know him, I knew their pain and their fear.
And I knew that so often, a trip to this floor is the first leg of the final journey...........
Finally, there's hope.......
Often, when it seems that the drugs have done their job and the pain has subsided, he moves or has to go to the restroom, and the spell is broken. The pain returns with a vengeance, everytime seemingly worse than the time before.
He lays in bed, almost writhing in pain, and daughter Robbie and I watch the clock as the minutes slowly tick by. He's had 45 mg. of Morphine and 6 mg. of Dilauded, and our nurse daughter Gale has told us that it will probably take 4 hours for the Morphine to begin to ease the pain. Finally, he begins to sleep but the restroom beckons. Walking has become an effort that causes unrelenting pain.
At about 2 a.m., he decides that he can no longer stand the pain, so we head for Hattiesburg and the ER. The ER doctor acts as if we're there for drugs (which we are!). Apparently, he's had little exposure to a MM patient and the unrelenting pain. Lucky for us, we have a nurse that has worked on the Oncology floor and understands. Before daylight arrives, he's moved to the Oncology floor, and we decide that, this time, we're going nowhere until they get the pain under control. These weekend "field trips" to the ER are no fun.
2 mg of Delaudid is injected into his IV line every two hours to try and control his pain.
His Oncologist visits on Friday morning, and I question what Bob's future would be without the SCT. I'm told that he would have to continue Chemo, forever. The Oncologist still thinks that the Chemo (Velcade) is the reason for the pain, and he decides to stop the Velcade but continue the Dex - so that the MM won't get out-of-hand. There are more tests - MRI and bloodwork.
We ask for a referral to a Pain Management Specialist, and on Saturday afternoon late, he finally arrives. This doctor makes house calls and has been to a nearby town to fill a pain pump for a patient. He comes into the room and his greeting is "Why haven't I been called, sooner?" I explain that our oncologist has tried to work thru the process, and examine every possible avenue before calling him.
After extensive questioning about Bob's medical history and an examination of his back, he assures us that he can "fix this"! He tells us that Bob's Genetic makeup is the reason the Morphine has not been successful, and the reason he's unable to tolerate the Fentanyl patches. He explains that he will put Bob on Exalgo (a very expensive drug, not currently covered by insurance) a new long acting, extended release of Dilaudid, along with Zanaflex (muscle relaxer), and Celebrex. He will also complete 3 injections, over an unspecified period, into the Lumbar Facet Joints. This procedure will kill the nerves, thereby eventually eliminating the problem.
The doctor tells us that the condition of his spine will prevent him from being able to play golf. This is a small sacrifice, if it enables a pain free future. Finally, a plan that sounds like it may work! Can we truly have nights without pain and discomfort, and trips to the ER?
And finally, there's hope!
Tuesday, January 18, 2011
This is the way it's going to be....
Another overnight stay in the hospital, over the weekend. All Fentanyl patches have now been removed, and the only pain meds are the 6 mg of Dilaudid for "break through" pain (not sure how it breaks through, since it never really leaves!).
Just had to love the latest doctor's fatalistic approach to the pain ......"He has Multiple Myeloma, this is how it's going to be. If he wants to control the pain, then he has to deal with the pink elephants, on the wall."
His PCP has now prescribed Cymbalta, to help with the depression, anxiety, and pain. Really sounds like a miracle drug, doesn't it!
Last week Bob met a man, in his age group, that has been living with MM for almost 6 years - with no SCT. He soon will have to make this same decision - should he, or not? I have asked family members (children, siblings, etc.) to keep their SCT opinions to themselves. I want him to be able to make his own decision without regard to what everyone else thinks. After all, it's his body that will have to experience this procedure, this pain, this success or failure.
We've had lots of company/visitors over the past few weeks, and it helps to keep his mind occupied rather than just focusing on his cancer. My brother, who has been cancer free for 6 years, is a great source of information for Bob. Although he didn't have the same kind of cancer, it was still cancer, with many of the same pains, issues, etc. It helps to talk to someone who has been where you are. Someone who can listen and just say "I know how you feel".
Our family (children, siblings, cousins) have been so supportive and "in the wings" whenever we needed them. Friends, and neighbors, call and stop by - and these are the things that help us to get by. It's a journey that will continue, and it's wonderful that we aren't travelling alone. MLK's birthday weekend allowed daughter Robbie to come home from TX, and bring her great sense of humor, along with Bob's brother Mike and sister-in-law Genann from NC. Laughter is always good for the soul, and we had plenty of that.
His lab numbers continue to be good - if the pain will just go away - things would be back to normal. (Now, I'm dreaming!)
Tomorrow, is the last treatment of Cycle 5. I expect his M-Spike to be zero........since it was 0.3 one month ago. Hopefully, he'll be in complete remission! How wonderful it would be if remission came with no pain, but that's not the way it works. I'm keeping my fingers crossed that Cymbalta really is a miracle drug! How great if a pill, taken to make the doldrums go away, also makes the pain go away!
Thanks for reading......thanks for prayers......thanks for being on this journey with us!
Just had to love the latest doctor's fatalistic approach to the pain ......"He has Multiple Myeloma, this is how it's going to be. If he wants to control the pain, then he has to deal with the pink elephants, on the wall."
His PCP has now prescribed Cymbalta, to help with the depression, anxiety, and pain. Really sounds like a miracle drug, doesn't it!
Last week Bob met a man, in his age group, that has been living with MM for almost 6 years - with no SCT. He soon will have to make this same decision - should he, or not? I have asked family members (children, siblings, etc.) to keep their SCT opinions to themselves. I want him to be able to make his own decision without regard to what everyone else thinks. After all, it's his body that will have to experience this procedure, this pain, this success or failure.
We've had lots of company/visitors over the past few weeks, and it helps to keep his mind occupied rather than just focusing on his cancer. My brother, who has been cancer free for 6 years, is a great source of information for Bob. Although he didn't have the same kind of cancer, it was still cancer, with many of the same pains, issues, etc. It helps to talk to someone who has been where you are. Someone who can listen and just say "I know how you feel".
Our family (children, siblings, cousins) have been so supportive and "in the wings" whenever we needed them. Friends, and neighbors, call and stop by - and these are the things that help us to get by. It's a journey that will continue, and it's wonderful that we aren't travelling alone. MLK's birthday weekend allowed daughter Robbie to come home from TX, and bring her great sense of humor, along with Bob's brother Mike and sister-in-law Genann from NC. Laughter is always good for the soul, and we had plenty of that.
His lab numbers continue to be good - if the pain will just go away - things would be back to normal. (Now, I'm dreaming!)
Tomorrow, is the last treatment of Cycle 5. I expect his M-Spike to be zero........since it was 0.3 one month ago. Hopefully, he'll be in complete remission! How wonderful it would be if remission came with no pain, but that's not the way it works. I'm keeping my fingers crossed that Cymbalta really is a miracle drug! How great if a pill, taken to make the doldrums go away, also makes the pain go away!
Thanks for reading......thanks for prayers......thanks for being on this journey with us!
Saturday, January 15, 2011
Just things......
I ended my last post with the new back brace experiment. Bob had been given 12 mg. of Decadron last Friday and 12 mg. on Saturday, and then on Tuesday (Chemo day) he received another 20 mg. so there has been no pain. Because the Decadron damages the bones, the oncologist gave us another prescription for a Medrol pack.
There's some disagreement between the Oncologist and the Neurologist as to what is causing the pain. The Neurologist thinks it's the cancer because the Compression Fracture is so small, and the Oncologist disagrees about the cancer theory, because his cancer is almost in remission. We really don't care if they get on the same page, if someone will just determine the cause! Hopefully, the CT Scan and the Flexion-Extension Xray, next Thursday, will help to arrive at a diagnosis.
On Wednesday afternoon, my heart skipped a beat when I heard a loud crash in the back of the house. Somehow, his feet had slipped out from under him, and he ended up on the floor. Thankfully, he wasn't injured and had no broken bones but he now has a new realization that he isn't as steady on his feet as he once was. And, I realized that even though he's lost weight, he's still pretty heavy when I'm trying to help him up off the floor! I was grateful that cousin Tianni, and another set of arms, was handy!
The Decadron always begins to wear off on Thursday, and the pain returns. We had the Medrol pack, but we needed to know if the back brace was going to do anything to help the pain so, in our infinite "wisdom", we decided to hold off on taking the steroids. Around 4:00 a.m., on Friday, it was apparent that it was time to stop testing - he had struggled through the night, so he took the first day dosage - 24 mg. If I were writing notes on the results of our "Back Brace Experiment", my assessment would have to be "Supports back but does nothing to assuage the pain".
The side effects of the Fentanyl patches (mental confusion, depression, etc., etc., etc.) seem to far outweigh the benefits. He's now only wearing one 50 mcg patch, and I'll be happy when I can safely remove the remaining patch. Thankfully, I've been able to chuckle at some of his "Fentanyl remarks". It really helps to be able to laugh, when I often feel like crying.
There's some disagreement between the Oncologist and the Neurologist as to what is causing the pain. The Neurologist thinks it's the cancer because the Compression Fracture is so small, and the Oncologist disagrees about the cancer theory, because his cancer is almost in remission. We really don't care if they get on the same page, if someone will just determine the cause! Hopefully, the CT Scan and the Flexion-Extension Xray, next Thursday, will help to arrive at a diagnosis.
On Wednesday afternoon, my heart skipped a beat when I heard a loud crash in the back of the house. Somehow, his feet had slipped out from under him, and he ended up on the floor. Thankfully, he wasn't injured and had no broken bones but he now has a new realization that he isn't as steady on his feet as he once was. And, I realized that even though he's lost weight, he's still pretty heavy when I'm trying to help him up off the floor! I was grateful that cousin Tianni, and another set of arms, was handy!
The Decadron always begins to wear off on Thursday, and the pain returns. We had the Medrol pack, but we needed to know if the back brace was going to do anything to help the pain so, in our infinite "wisdom", we decided to hold off on taking the steroids. Around 4:00 a.m., on Friday, it was apparent that it was time to stop testing - he had struggled through the night, so he took the first day dosage - 24 mg. If I were writing notes on the results of our "Back Brace Experiment", my assessment would have to be "Supports back but does nothing to assuage the pain".
The side effects of the Fentanyl patches (mental confusion, depression, etc., etc., etc.) seem to far outweigh the benefits. He's now only wearing one 50 mcg patch, and I'll be happy when I can safely remove the remaining patch. Thankfully, I've been able to chuckle at some of his "Fentanyl remarks". It really helps to be able to laugh, when I often feel like crying.
Monday, January 10, 2011
Another experiment.....
I decided that, maybe if Bob had someone to look at (other than this face he's been seeing for 50 years!), he might forget his MM, his pain, and how miserable he'd been feeling. I began to "schedule" visitors, and lucky for them, my cooking has gotten pretty good since retirement! (Maybe Cousin Pat wasn't so sure - she brought food!) And, it was much appreciated.
On Friday, the Fentanyl Patches seemed to be causing confusion and not relieving the pain. Of course this would happen, the weekend was upon us! I think I may apply for a Government Grant to study why pain is always worse at night, or on the weekend! I called the Cancer Center and was able to speak to his Oncologist's nurse. I asked if I could give him a "light" dose of the Decadron that I had on hand, to get him through the weekend, since that is the one drug that seems to appease the pain. She approved 12 mg. x 3. I gave him the 12 mg. on Friday, and 12 mg. on Saturday and continued the 6 mg. of Dilaudid every 4 hours.
Saturday, Sam and Ann Greco, friends across the years visited. Ann and I visited and also listened to some of the same old tales. (Bob and Sam were high school friends, have maintained contact through the years, and haven't forgotten one thing that happened to them eons ago!) In the afternoon, Bob's sister, Ginny, arrived knowing that she might get "snowed in" with us. The winter weather that had been making its way across the midwest turned southward. We didn't get much in our area of the state, but it certainly gave the weather commentators something to look forward to.
This morning, we headed to Hattiesburg so that Bob could get measured for a "custom back brace". As someone has written, so often MM patients must endure "experiments". What works for one MM patient may not work for another - so much of the time, it seems to be trial and error, or trial and fail.
What a great experience at Hanger Brace. Bob was measured and fitted by such a nice young man. It's too early to tell if this experiment will work, but today has been bearable. He commented that if it got no worse than this, he could stand the pain. Of course, he has accumulated 24 mg. of steroids in his body since Friday, and he still has the Dilaudid - so the back brace gets no credit just yet!
Will the back brace work? Will the time come when he tries the back brace without the pain meds? Will he ever be able to get off the pain meds? Questions, questions, questions!!!
On Friday, the Fentanyl Patches seemed to be causing confusion and not relieving the pain. Of course this would happen, the weekend was upon us! I think I may apply for a Government Grant to study why pain is always worse at night, or on the weekend! I called the Cancer Center and was able to speak to his Oncologist's nurse. I asked if I could give him a "light" dose of the Decadron that I had on hand, to get him through the weekend, since that is the one drug that seems to appease the pain. She approved 12 mg. x 3. I gave him the 12 mg. on Friday, and 12 mg. on Saturday and continued the 6 mg. of Dilaudid every 4 hours.
Saturday, Sam and Ann Greco, friends across the years visited. Ann and I visited and also listened to some of the same old tales. (Bob and Sam were high school friends, have maintained contact through the years, and haven't forgotten one thing that happened to them eons ago!) In the afternoon, Bob's sister, Ginny, arrived knowing that she might get "snowed in" with us. The winter weather that had been making its way across the midwest turned southward. We didn't get much in our area of the state, but it certainly gave the weather commentators something to look forward to.
This morning, we headed to Hattiesburg so that Bob could get measured for a "custom back brace". As someone has written, so often MM patients must endure "experiments". What works for one MM patient may not work for another - so much of the time, it seems to be trial and error, or trial and fail.
What a great experience at Hanger Brace. Bob was measured and fitted by such a nice young man. It's too early to tell if this experiment will work, but today has been bearable. He commented that if it got no worse than this, he could stand the pain. Of course, he has accumulated 24 mg. of steroids in his body since Friday, and he still has the Dilaudid - so the back brace gets no credit just yet!
Will the back brace work? Will the time come when he tries the back brace without the pain meds? Will he ever be able to get off the pain meds? Questions, questions, questions!!!
Thursday, January 6, 2011
No miracles today.....
Bob and I had both hoped that today would be the answer to our prayer. We arrived early for his appointment with the Neurological Spine Specialist, and were called back to the examining room early; and then we sat for over an hour awaiting the doctor.
I soon learned why we'd waited so long. Here was another doctor willing to give us his undivided attention for however long it took. He had a beautiful French accent and a great bedside manner, but alas he was not able to perform the miracles for which we had waited.
He informed us that he didn't think the Compression Fracture in the L1 was responsible for all the excruciating pain Bob was experiencing, because it was too small. Because the Multiple Myeloma attacks and weakens the bones, he thought that the pain was coming from the cancer. He suggested there is a possiblity that there are tumors in his bones. The MM weakens the bones to the point that the spine is unable to support the body, thereby creating and causing unbearable pain - especially when Bob is up and on his feet.
The doctor ordered a Flexation Extension Xray on the Lumbar spine, and a CT Scan of the Lumbar Spine just to ensure that there are no other issues. He suggested that a custom back brace might be in order, to help support the spine and help the spine support the weight of Bob's body. So, tomorrow he goes to be measured for a back brace. This will be another in the long list of "things we've tried" to appease the "Gods of Pain".
Dr. Benae told us that there was nothing else he could do. There were no surgical procedures that could be performed - no magic. If the back brace did not work he would suggest an Injection Specialist (Pain Management). Steroids could be injected into the bone, in the area of the pain. When asked how long the effects of the procedure would last, his answer was "3 months, 6 months, or 1 week". Knowing how bad Bob's back hurts, and how ineffective all the drugs have been ......I knew which answers his would be, and I didn't like it. We asked about a Nerve Block and he responded that there was nothing pressing on the nerves, so he doubted that would help.
Through all the Chemo, Bob has never been nauseated. Today, I had to pull over to the side of the road - and he was sick, for the first time. I knew that all the pent up emotions, and all the hope that had been focused on this day, had caused this. He could no longer hold it in.
He has had manageable pain since noon Sunday (after the trip to the ER, and the steroid injection). We have tried to "stay ahead" of the pain with the 3 Fentanyl patches and the 6 mg of Dilauded every four hours. Is there a possibility that his body is adjusting? Maybe the injection helped to break the pain cycle, and the drugs are able to keep up. Whatever the reason, please God .....let him have one more night without pain.
And, it's time to say "thank you" for all your thoughts, prayers, support, calls, and love. Without you, this journey would be even harder than it is.
I soon learned why we'd waited so long. Here was another doctor willing to give us his undivided attention for however long it took. He had a beautiful French accent and a great bedside manner, but alas he was not able to perform the miracles for which we had waited.
He informed us that he didn't think the Compression Fracture in the L1 was responsible for all the excruciating pain Bob was experiencing, because it was too small. Because the Multiple Myeloma attacks and weakens the bones, he thought that the pain was coming from the cancer. He suggested there is a possiblity that there are tumors in his bones. The MM weakens the bones to the point that the spine is unable to support the body, thereby creating and causing unbearable pain - especially when Bob is up and on his feet.
The doctor ordered a Flexation Extension Xray on the Lumbar spine, and a CT Scan of the Lumbar Spine just to ensure that there are no other issues. He suggested that a custom back brace might be in order, to help support the spine and help the spine support the weight of Bob's body. So, tomorrow he goes to be measured for a back brace. This will be another in the long list of "things we've tried" to appease the "Gods of Pain".
Dr. Benae told us that there was nothing else he could do. There were no surgical procedures that could be performed - no magic. If the back brace did not work he would suggest an Injection Specialist (Pain Management). Steroids could be injected into the bone, in the area of the pain. When asked how long the effects of the procedure would last, his answer was "3 months, 6 months, or 1 week". Knowing how bad Bob's back hurts, and how ineffective all the drugs have been ......I knew which answers his would be, and I didn't like it. We asked about a Nerve Block and he responded that there was nothing pressing on the nerves, so he doubted that would help.
Through all the Chemo, Bob has never been nauseated. Today, I had to pull over to the side of the road - and he was sick, for the first time. I knew that all the pent up emotions, and all the hope that had been focused on this day, had caused this. He could no longer hold it in.
He has had manageable pain since noon Sunday (after the trip to the ER, and the steroid injection). We have tried to "stay ahead" of the pain with the 3 Fentanyl patches and the 6 mg of Dilauded every four hours. Is there a possibility that his body is adjusting? Maybe the injection helped to break the pain cycle, and the drugs are able to keep up. Whatever the reason, please God .....let him have one more night without pain.
And, it's time to say "thank you" for all your thoughts, prayers, support, calls, and love. Without you, this journey would be even harder than it is.
Wednesday, January 5, 2011
A beautiful pain free day.....
Our Saturday night "after midnite" visit to the ER - strange doctor - 125 mg. of Medrol (steroid) has worked wonders. My honey has been without his horrendous, unrelenting back and leg pain since about mid-morning on Sunday. We always look forward to Tuesdays, since it's Chemo, and 20 mg. of Dex, day. He gets out of bed, looking for those 5 little white pills, which are worth their weight in gold. They take him, pain free, until about Thursday noon.
In preparation for the pain we expect to return, he also has 3 - 50 mcg Fentanyl patches on his back, and continues to take the 6 mg. of Delaudid every 4 hours.
His lab numbers are still good. WBC = 9.70 which is within the normal range. RBC = 3.63, HGB = 11.6, and HCT = 32.9 all are still lower than they should be, but are continuing to improve each week. His Platelets are 215,000 and finally in
the normal range. His M-Spike is 0.3, and the light chains are normal (Free Kappa Lt Chain = 11.74, Free Lambda Lt Chain = 11.26, and Kappa/Lambda Ratio = 1.04. These numbers mean that he's almost in remission!
He has two more Chemo treatments in this Cycle, and then a possibility of heading to Dallas for the SCT Autologus (harvesting of his own Stem Cells) workup.
Thursday, we will meet with a Neurological Spine Specialist to learn if there's anything, other than drugs, to combat the constant pain in his back and legs. Keeping our fingers crossed, and saying lots of prayers, that this will be a "Miracle visit".
This afternoon, we sat in the rocking chairs on our front porch, and soaked up the warm, wonderful sun. Almost impossible to believe that it's January 4th, and we were able to sit outside in short sleeves! A small bird (if it's not red, blue, or a hummingbird, I can't identify it!) perched on my new filled feeder, and ate as if it had had nothing all winter. A 7 or 8 point Buck ran across the front yard, and into the woods, oblivious to us. Occasionally, the wind brushed the tops of the tall pines that stand guard beside the house. And, for that hour, we forgot that things weren't normal.
We've learned to take nothing for granted, including the fact that he's almost in remission. And, we're thankful for each and every day.........especially those with no pain!!
In preparation for the pain we expect to return, he also has 3 - 50 mcg Fentanyl patches on his back, and continues to take the 6 mg. of Delaudid every 4 hours.
His lab numbers are still good. WBC = 9.70 which is within the normal range. RBC = 3.63, HGB = 11.6, and HCT = 32.9 all are still lower than they should be, but are continuing to improve each week. His Platelets are 215,000 and finally in
the normal range. His M-Spike is 0.3, and the light chains are normal (Free Kappa Lt Chain = 11.74, Free Lambda Lt Chain = 11.26, and Kappa/Lambda Ratio = 1.04. These numbers mean that he's almost in remission!
He has two more Chemo treatments in this Cycle, and then a possibility of heading to Dallas for the SCT Autologus (harvesting of his own Stem Cells) workup.
Thursday, we will meet with a Neurological Spine Specialist to learn if there's anything, other than drugs, to combat the constant pain in his back and legs. Keeping our fingers crossed, and saying lots of prayers, that this will be a "Miracle visit".
This afternoon, we sat in the rocking chairs on our front porch, and soaked up the warm, wonderful sun. Almost impossible to believe that it's January 4th, and we were able to sit outside in short sleeves! A small bird (if it's not red, blue, or a hummingbird, I can't identify it!) perched on my new filled feeder, and ate as if it had had nothing all winter. A 7 or 8 point Buck ran across the front yard, and into the woods, oblivious to us. Occasionally, the wind brushed the tops of the tall pines that stand guard beside the house. And, for that hour, we forgot that things weren't normal.
We've learned to take nothing for granted, including the fact that he's almost in remission. And, we're thankful for each and every day.........especially those with no pain!!
Sunday, January 2, 2011
Another day, of pain.....
As the days pass, the pain in Bob's lower back and legs seems to get worse. I've not quite figured out why the days can be acceptable, and the nights unbearable. He looks forward to the one day in the week when he has Chemo and 20 mg. of Decadron (steroid). As strange as it seems, even though the steroids make the bones thinner and weaker, they are the one med that stops the pain .....for a couple of days.
The 45 mg of Morphine and later, the 50 mcg Fentanyl Pain Patch, does very little to appease the "Gods of Pain". Every 4 hours, round-the-clock, he also gets 6 mg. of Delaudid - and I could just as well flush it down the toilet for all the good it seems to do. There had also been the Vertebroplasty Procedure (bone cement injected into the fracture), and a Bisphosphonate (Zometa) injection to strengthen the bones and help with the pain - neither of which had worked. Our little pill of choice has become the Phenergan (for nausea), for it brings on sleep for a few minutes, or if we're lucky, sometimes an hour. And then, the pain returns even worse than before.
The pain has gotten so bad that it now affects his appetite - which has never been a problem. And, my concern is that he'll become dehydrated - so I search for signs in his face and on his body, and I read and research the web to ensure that I'm not missing something.
He goes to bed, at night, and I hold my breath .....praying that this will be the one night when he can sleep, free of pain. I sit in the living room, and I hear the bedroom door open, knowing that this is going to be another long night. He has never complained, never asked "why me?", so when the tears appear in his eyes, and he says "I can't stand this, anymore".....my heart breaks. I've done everything that we can do, and I've given every pill that can be given. I've massaged him with Bengay, even though the pain is in his bones ......and I know it only helps the muscles and not the bones.. I've wrapped him in ice wraps, and I've kept the heating pad by his chair.
Finally, I suggest that we make a trip to the ER. I call the Cancer Center and talk to the Oncologist that's on call. He agrees to my suggestion that we come in, even though we'll only be treated by the Hospitalist. Maybe they can do something to break the pain cycle. We can only hope. I know that his pain is unbearable, or he'd never agree to an "after midnight" trip to the hospital.
We arrive at the ER shortly after 2:15 a.m. and wait in Triage because all the 40+ beds in ER are filled. He hasn't had a stroke, and he isn't having a heart attack - he "just has cancer" and is in pain. We fall to the bottom of the list behind the crying babies, and the woman who didn't know she was pregnant, but had a baby in the public restroom.
After two hours and several questions of when we'll be treated, I tell the nurse that I have his pain meds in the car - he's in terrible pain, and I'm going out to get them, and give them to him. Within less than 5 minutes, the doctor that was visiting with a group of nurses, came rushing into the room. (Guess that trick only works if you're in pain and mention treating yourself.)
Apparently, it had been a long Saturday night in the ER so I wasn't sure if the man standing beside the bed was a newbie, or if he'd just done all the thinking he could do. He had on scrubs, but he truly looked a little out-of-place. After I went through Bob's MM history, and the meds that we'd tried without success, the expression on the doctor's face became blank. I knew there would be no miracles performed, in that ER room on this night (or morning)......not by this doctor, anyway. I had hoped to hear "why don't we try"......instead, I heard "what would you like for me to give him?" I knew it was a reasonable question, but I had hoped that for just this small timeframe someone would have a billiant idea that would fix everything.
I suggested that the steroids were the only thing that had stopped the pain, so he offered that he could give Bob 125 mg. of Medrol. Not as strong as the Decadron he gets on Chemo day, but strong enough to provide some relief. At that moment my up to that minute practically comatose hubby decided to throw a rock through the window (so to speak). He looked at this man in scrubs and asked "will this hurt my kidneys?" That almost did it. The poor man now didn't know if he should give him the steroids......why had this question been asked......was there a kidney problem? At this point, he offered that he could give Bob Toradol! Now, we've had morphine, delaudid and a Fentanyl pain patch - none of which work......so Toradol will be the magic drug??? No!! I suggest that the steroids really will be okay. Yes, they can harm the kidneys but so can the Chemo and so can the cancer.
The nurse arrives with the Medrol and a needle and begins to administer what I hope will be the magical drug. Later, the doctor returns and asks if I want another 125 mg......or do I want blood work, or a CT Scan, or an MRI? It's been a long night, and I haven't been to bed, so I only want to go home with my very painful hubby ....and hope this takes the pain away, very soon.
As I drive home, I wish there were automatic pilots for cars - like planes. I feel as if I can sleep forever. Six hours after leaving our driveway, we arrive back home, and I'm now wide awake! My honey has expected miracles, but is still in unbearable pain, so I pull out the little magic pill (phenergan), knowing that he'll sleep for a little while. Maybe he'll wake up with no pain. Finally, approximately 5 or 6 hours after it was given, the steroid takes effect.
He sits in his recliner, and sleeps, and I watch closely to ensure that he's breathing, and that his color is good. I notice that his eyelids are much darker than they should be. A quick search of the internet tells me that this is one of the signs of dehydration. His appetite hasn't been good, and he hasn't been drinking the 64 - 80 ounces of fluid, daily. Periodically, I awaken him and urge him to drink - and I threaten him with going back to the ER, if he doesn't!!
We need a better, longterm solution for his pain. His cancer is almost in remission, but the damage that it has accomplished on his bones will not, cannot, be reversed. I cry because the vibrant, energetic man that used to live in our house is a prisoner to his own body. I cry because he's in pain, and I can do nothing. I pray for a miracle, and I pray for strength, for both of us to endure.
Yes, Multiple Myeloma is treatable ......it just may be the other things that aren't.
The 45 mg of Morphine and later, the 50 mcg Fentanyl Pain Patch, does very little to appease the "Gods of Pain". Every 4 hours, round-the-clock, he also gets 6 mg. of Delaudid - and I could just as well flush it down the toilet for all the good it seems to do. There had also been the Vertebroplasty Procedure (bone cement injected into the fracture), and a Bisphosphonate (Zometa) injection to strengthen the bones and help with the pain - neither of which had worked. Our little pill of choice has become the Phenergan (for nausea), for it brings on sleep for a few minutes, or if we're lucky, sometimes an hour. And then, the pain returns even worse than before.
The pain has gotten so bad that it now affects his appetite - which has never been a problem. And, my concern is that he'll become dehydrated - so I search for signs in his face and on his body, and I read and research the web to ensure that I'm not missing something.
He goes to bed, at night, and I hold my breath .....praying that this will be the one night when he can sleep, free of pain. I sit in the living room, and I hear the bedroom door open, knowing that this is going to be another long night. He has never complained, never asked "why me?", so when the tears appear in his eyes, and he says "I can't stand this, anymore".....my heart breaks. I've done everything that we can do, and I've given every pill that can be given. I've massaged him with Bengay, even though the pain is in his bones ......and I know it only helps the muscles and not the bones.. I've wrapped him in ice wraps, and I've kept the heating pad by his chair.
Finally, I suggest that we make a trip to the ER. I call the Cancer Center and talk to the Oncologist that's on call. He agrees to my suggestion that we come in, even though we'll only be treated by the Hospitalist. Maybe they can do something to break the pain cycle. We can only hope. I know that his pain is unbearable, or he'd never agree to an "after midnight" trip to the hospital.
We arrive at the ER shortly after 2:15 a.m. and wait in Triage because all the 40+ beds in ER are filled. He hasn't had a stroke, and he isn't having a heart attack - he "just has cancer" and is in pain. We fall to the bottom of the list behind the crying babies, and the woman who didn't know she was pregnant, but had a baby in the public restroom.
After two hours and several questions of when we'll be treated, I tell the nurse that I have his pain meds in the car - he's in terrible pain, and I'm going out to get them, and give them to him. Within less than 5 minutes, the doctor that was visiting with a group of nurses, came rushing into the room. (Guess that trick only works if you're in pain and mention treating yourself.)
Apparently, it had been a long Saturday night in the ER so I wasn't sure if the man standing beside the bed was a newbie, or if he'd just done all the thinking he could do. He had on scrubs, but he truly looked a little out-of-place. After I went through Bob's MM history, and the meds that we'd tried without success, the expression on the doctor's face became blank. I knew there would be no miracles performed, in that ER room on this night (or morning)......not by this doctor, anyway. I had hoped to hear "why don't we try"......instead, I heard "what would you like for me to give him?" I knew it was a reasonable question, but I had hoped that for just this small timeframe someone would have a billiant idea that would fix everything.
I suggested that the steroids were the only thing that had stopped the pain, so he offered that he could give Bob 125 mg. of Medrol. Not as strong as the Decadron he gets on Chemo day, but strong enough to provide some relief. At that moment my up to that minute practically comatose hubby decided to throw a rock through the window (so to speak). He looked at this man in scrubs and asked "will this hurt my kidneys?" That almost did it. The poor man now didn't know if he should give him the steroids......why had this question been asked......was there a kidney problem? At this point, he offered that he could give Bob Toradol! Now, we've had morphine, delaudid and a Fentanyl pain patch - none of which work......so Toradol will be the magic drug??? No!! I suggest that the steroids really will be okay. Yes, they can harm the kidneys but so can the Chemo and so can the cancer.
The nurse arrives with the Medrol and a needle and begins to administer what I hope will be the magical drug. Later, the doctor returns and asks if I want another 125 mg......or do I want blood work, or a CT Scan, or an MRI? It's been a long night, and I haven't been to bed, so I only want to go home with my very painful hubby ....and hope this takes the pain away, very soon.
As I drive home, I wish there were automatic pilots for cars - like planes. I feel as if I can sleep forever. Six hours after leaving our driveway, we arrive back home, and I'm now wide awake! My honey has expected miracles, but is still in unbearable pain, so I pull out the little magic pill (phenergan), knowing that he'll sleep for a little while. Maybe he'll wake up with no pain. Finally, approximately 5 or 6 hours after it was given, the steroid takes effect.
He sits in his recliner, and sleeps, and I watch closely to ensure that he's breathing, and that his color is good. I notice that his eyelids are much darker than they should be. A quick search of the internet tells me that this is one of the signs of dehydration. His appetite hasn't been good, and he hasn't been drinking the 64 - 80 ounces of fluid, daily. Periodically, I awaken him and urge him to drink - and I threaten him with going back to the ER, if he doesn't!!
We need a better, longterm solution for his pain. His cancer is almost in remission, but the damage that it has accomplished on his bones will not, cannot, be reversed. I cry because the vibrant, energetic man that used to live in our house is a prisoner to his own body. I cry because he's in pain, and I can do nothing. I pray for a miracle, and I pray for strength, for both of us to endure.
Yes, Multiple Myeloma is treatable ......it just may be the other things that aren't.
Saturday, January 1, 2011
The Journey continues with Cycle 5 .......
Even though Bob has been in unrelenting, uncontrollable pain for the past weeks, he received great news on Tuesday. He is almost in complete remission with his M-Spike (Cancer count) at 0.3 (started at almost 6.0) and his light chains are normal.
Bone pain is common with Multiple Myeloma, which secretes a hormone that breaks down the bones. Compression fractures of the spine, which is what Bob has, pose an even bigger problem. The bones are weakened and can no longer support the body, thereby creating fractures - which create pain.
His pain is almost to the point of being unbearable. He is now wearing two 50 ml Fentanyl pain patches, as well as taking 6 mg. of Delaudid every 4 hours. I even have the alarm set on my cell phone so that we don't miss a dose in the middle of the night. So far, we've tried MS-Contin (morphine), Vertebroplasty (bone cement injected into the fracture), Delaudid, and now, the pain patch. On Thursday, January 6, he has an appointment with an Orthopedic Spine doctor. Hopefully, he'll be able to suggest something to alleviate the pain. Otherwise, our next stop will be a Pain Management Specialist.
He has 3 more Chemo treatments, in this cycle, before Dallas. On the one hand, MM wouldn't be so bad if it were "only the cancer" - it's the scars it leaves behind. A Stem Cell Transplant (SCT) can ensure a few more years, but the SCT that helps to put the cancer in remission can do nothing to heal the pain that the cancer has left behind.
This past week, a young (42) man in our area, died because of this terrible disease. It's treatable......it just isn't curable. Wouldn't it be wonderful, if in 2011, it became curable as well as treatable!!
Bone pain is common with Multiple Myeloma, which secretes a hormone that breaks down the bones. Compression fractures of the spine, which is what Bob has, pose an even bigger problem. The bones are weakened and can no longer support the body, thereby creating fractures - which create pain.
His pain is almost to the point of being unbearable. He is now wearing two 50 ml Fentanyl pain patches, as well as taking 6 mg. of Delaudid every 4 hours. I even have the alarm set on my cell phone so that we don't miss a dose in the middle of the night. So far, we've tried MS-Contin (morphine), Vertebroplasty (bone cement injected into the fracture), Delaudid, and now, the pain patch. On Thursday, January 6, he has an appointment with an Orthopedic Spine doctor. Hopefully, he'll be able to suggest something to alleviate the pain. Otherwise, our next stop will be a Pain Management Specialist.
He has 3 more Chemo treatments, in this cycle, before Dallas. On the one hand, MM wouldn't be so bad if it were "only the cancer" - it's the scars it leaves behind. A Stem Cell Transplant (SCT) can ensure a few more years, but the SCT that helps to put the cancer in remission can do nothing to heal the pain that the cancer has left behind.
This past week, a young (42) man in our area, died because of this terrible disease. It's treatable......it just isn't curable. Wouldn't it be wonderful, if in 2011, it became curable as well as treatable!!
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