M-Spike is Zero!! That good news could not have arrived at a better time. Even though my honey was still spiking a fever, and felt terrible, it did bring a smile to his face.....and tears to his eyes.
It has been almost two weeks (tomorrow), and we're still taking up space in a hospital room. We've changed floors, and daughters, and are still fighting the Pneumonia and Staph infection.......and we're glad the MM decided to take a break!
On Saturday, he was moved from the Telemetry Floor to Regency Hospital (a hospital within a hospital). Regency is the Long Term Acute Care, on the 5th floor of FGH, where he can continue to receive antibiotics, breathing treatments, and physical therapy, and get well enough to "eventually" go home. (So far, he isn't to the point of having that discussion.)
He still has pneumonia in the lower lobe of his right lung, but his breathing is much better, and the Staph infection is still prevalent. The Infectious Disease group is collecting blood and growing cultures, and believe that the Infusa Port is the source of the Staph Infection. If that turns out to be correct, there will be surgery in his future....to remove the port, and try to clear up the infection. In my opinion (and you know how much that is worth) that has to be the source.....otherwise, with all the antibiotics in his body......surely it would be cleared up.
And, because his stomach is so sensitive (and he's had so many antibiotics), I'm wondering when the C-Diff (caused by antibiotics) is going to show up!! (Not that I'm a pessimist.....I just know this man, and his stomach!) And, once one has had C-Diff, it usually recurs.
We've had such a week! I ended up in the ER on two separate nights, in horrible pain. And....wouldn't you know one of the ER docs was one my honey had (before pain control). One of those that thought we were in for drugs......which we were!! So now, "the old lady" is back, in pain....."my, my". As it turned out, my pain was an abscessed tooth that took on a life of its own. And, my face looked (and felt) like I didn't win the fight. Almost one week later, I still have a "puffy" face, my lips are numb and tingling, and my mouth is sore.....and I'm minus two teeth and one permanent bridge (yep, the teeth were anchoring the bridge). I had really hated that bridge......but I just didn't realize that God was going to put me thru such misery so I could get rid of it! So, in this instance.....I didn't "blame" God......I thanked Him!!
On Sunday, we had a changing of the guard around here. Youngest daughter, Robbie, had to return to TX and her little family, and work. Our eldest daughter, Gale, was glad to escape the colder weather of PA and come to our aid. And, since she's still recovering from her own illness and accident, the timing was perfect. I don't know what I'd do without these two and their helping hands. We've all learned that when one is tired enough, a hospital "bed chair" sleeps pretty well. Thankfully, my honey is well enough to be left alone these past few nights.
MM is usually the underlying cause of many of our problems. We're so happy it didn't join this fray and cause additional problems. It was nice to have good news.......some sunshine behind those dark clouds.
Wednesday, October 19, 2011
Tuesday, October 11, 2011
An unexpected detour.......
Early last Thursday morning, my honey awakened me with chills and fever. He was extremely weak and needed help to navigate from the bed to the bathroom. I had also begun to see a pattern of 1,000 mg. of Tylenol having more success with his pain than 4 or 8 mg. of Dilaudid. I was also almost positive that the location of his pain (right, upper back just under his shoulder blade) was probably an indication of what I feared most - pneumonia. Coupled with my fear that he was getting dehydrated and beginning to have kidney problems, there was no doubt we were going to a hospital.
There were two or three hospitals within a 15 - 20 minute drive of our RV Park, but I made the decision to get him back to Hattiesburg, and the hospital where all his medical records exist. In his weakened condition, my concern was whether he could withstand the 1 1/2 hour drive. Friends helped him down the RV steps and into the car (I had barely been able to help him get to the bathroom - so I knew that trying to help him down the narrow RV steps could put us both in the hospital.)
With the flashers going, and my heavy foot (NASCAR drivers would have been so proud), we pulled under the ER canopy in about 45 minutes. Even though the ER waiting room was filled to capacity, he was bumped to the front of the line because of his age and his condition.
My worst fears were soon realized: Pneumonia and Acute Renal Failure. Little did I know that the news would soon get worse. He was moved, not to the Oncology Floor but to the Telemetry Unit (patients that are seriously ill or in danger of developing complications).
The Hospitalist on duty informed me that he was stopping Bob's Chemo (Revlimid) because his blood counts and platelets were dropping. Just 6 days earlier, his Platelets were 158,000 and now they were 78,000 (two days later, they were 43,000). He would be headed toward a Platelet Infusion and probably a Blood Transfusion, if the numbers didn't begin to correct. (Note: His last dose of Revlimid was on Thursday morning, prior to our hospital trip, and his Platelets today were 52,000. Still not great, but an improvement.)
On Friday, we were told that he had some type of unidentified blood infection, which is causing chills and fevers (almost on a 12 hour schedule.....usually at 4 p.m. and 4 a.m.). And today, I was told that there is a concern of Acidosis (excessive acids in the body fluids) which is being caused by the deteriorating condition of his lungs and kidneys. The bags of antibiotics and fluids, hanging on the IV pole at his bedside, seem to be having a hard time battling the unknown infection attacking his body.
An Infectious Disease Specialist was called in and has identified the infection as Staph (thank goodness, not MRSA), and added more antibiotics to his IV pole. The origin of the Staph is unknown, but the ID Specialist is leaning toward the Infusa Port (for administration of chemo, etc.) Cultures have been inconclusive.
A Pulmonologist has been consulted and is concerned that very little progress has been made, in treating the pneumonia, (in both the upper and lower lobes of the right lung), even with all the antibiotics. He will perform a Bronchoscopy (use of a flexible fiberoptic tube to view the insides of the lung) and obtain samples, tomorrow morning.
On a positive note, his kidney functions seem to be improving and the stoppage of the Revlimid has allowed his blood counts to begin to correct (some needed to increase and others to decrease). The good Dr. H is having his M-Spike checked......just to keep track of the Myeloma. We pray that it is taking a rest while all the other battles are being waged, in his body.
Needless to say, he is very weak and has begun to sleep much of the time. Just a short walk to the bathroom is tiring.
Thankfully, our daughters are now old enough that they feel they don't have to listen to me (everytime). Robbie arrived from Texas a little before 10:00 p.m., last night. How wonderful to have support - both physically and mentally. Gale will come, when Robbie has to return home.
We are so thankful for all the calls, text messages, emails, FB postings, visits, cards, and goodies.....and especially for your concern, thoughts, and prayers.
What a journey we've been on, this past year. Just when it seemed that we had gotten over the bumps, and around the major roadblocks, it appears there's a detour..........praying that we get back on the right road.....soon!!
There were two or three hospitals within a 15 - 20 minute drive of our RV Park, but I made the decision to get him back to Hattiesburg, and the hospital where all his medical records exist. In his weakened condition, my concern was whether he could withstand the 1 1/2 hour drive. Friends helped him down the RV steps and into the car (I had barely been able to help him get to the bathroom - so I knew that trying to help him down the narrow RV steps could put us both in the hospital.)
With the flashers going, and my heavy foot (NASCAR drivers would have been so proud), we pulled under the ER canopy in about 45 minutes. Even though the ER waiting room was filled to capacity, he was bumped to the front of the line because of his age and his condition.
My worst fears were soon realized: Pneumonia and Acute Renal Failure. Little did I know that the news would soon get worse. He was moved, not to the Oncology Floor but to the Telemetry Unit (patients that are seriously ill or in danger of developing complications).
The Hospitalist on duty informed me that he was stopping Bob's Chemo (Revlimid) because his blood counts and platelets were dropping. Just 6 days earlier, his Platelets were 158,000 and now they were 78,000 (two days later, they were 43,000). He would be headed toward a Platelet Infusion and probably a Blood Transfusion, if the numbers didn't begin to correct. (Note: His last dose of Revlimid was on Thursday morning, prior to our hospital trip, and his Platelets today were 52,000. Still not great, but an improvement.)
On Friday, we were told that he had some type of unidentified blood infection, which is causing chills and fevers (almost on a 12 hour schedule.....usually at 4 p.m. and 4 a.m.). And today, I was told that there is a concern of Acidosis (excessive acids in the body fluids) which is being caused by the deteriorating condition of his lungs and kidneys. The bags of antibiotics and fluids, hanging on the IV pole at his bedside, seem to be having a hard time battling the unknown infection attacking his body.
An Infectious Disease Specialist was called in and has identified the infection as Staph (thank goodness, not MRSA), and added more antibiotics to his IV pole. The origin of the Staph is unknown, but the ID Specialist is leaning toward the Infusa Port (for administration of chemo, etc.) Cultures have been inconclusive.
A Pulmonologist has been consulted and is concerned that very little progress has been made, in treating the pneumonia, (in both the upper and lower lobes of the right lung), even with all the antibiotics. He will perform a Bronchoscopy (use of a flexible fiberoptic tube to view the insides of the lung) and obtain samples, tomorrow morning.
On a positive note, his kidney functions seem to be improving and the stoppage of the Revlimid has allowed his blood counts to begin to correct (some needed to increase and others to decrease). The good Dr. H is having his M-Spike checked......just to keep track of the Myeloma. We pray that it is taking a rest while all the other battles are being waged, in his body.
Needless to say, he is very weak and has begun to sleep much of the time. Just a short walk to the bathroom is tiring.
Thankfully, our daughters are now old enough that they feel they don't have to listen to me (everytime). Robbie arrived from Texas a little before 10:00 p.m., last night. How wonderful to have support - both physically and mentally. Gale will come, when Robbie has to return home.
We are so thankful for all the calls, text messages, emails, FB postings, visits, cards, and goodies.....and especially for your concern, thoughts, and prayers.
What a journey we've been on, this past year. Just when it seemed that we had gotten over the bumps, and around the major roadblocks, it appears there's a detour..........praying that we get back on the right road.....soon!!
Wednesday, October 5, 2011
The knocking stopped.....and then.....
Have you ever had a car making a terrible noise.......you take it to the garage.....and NOTHING!! And then you get back home, and it starts.......again.
That's sorta' how it can be, sometime....at our house with this thing called Multiple Myeloma and pain. Last Thursday, my honey went to the Driving Range to hit golf balls. This was his first such outing in several months. And ever since he (we) has paid the price, in pain.
Sunday was just an awful day - with regard to level of pain. Finally, around sunset (isn't that when it always gets worse) I called his Pain Management Specialist. Thank goodness, this is one of the doctors that will share his cell phone number (although this was my first call to him), and he also makes house calls!! He told me what to do to get the pain under control, and said he'd see him on Tuesday (Monday was a surgery day).
Monday turned out to be a pretty good day.....for both of us (well, if he's pain free.....I'm headache free!) Then came Tuesday and our appointment. Not that I wished my honey any pain, but wouldn't you know on a scale of 0 - 10......he was 0 that day! (Take the noisy car to the garage, and it's "knock-free", everytime!)
Anyway, things were good. Doc thought the Driving Range was an excellent idea as long as honey didn't overdo it. And, he also gave me permission to increase the dose of Dilaudid, if necessary. So, we walked away with a pat on the back, a bill, and new prescriptions. Since they are controlled substance drugs, we have to do this every three months, anyway.
And along came today. It started early this morning with pain and chills. He's usually cold, because of his anemia, but here was this knocking (pain), again! He requested "one of my little white pills" (dilaudid), which usually work their magic after about an hour. Two hours later, he was still in pain.....so I gave him another "little white pill", and then there was the headache.....so I administered two Tylenol. Finally he slept, and with sleep comes relief from pain.
He rested and slept, off and on, for most of the day....and then came late afternoon, again......and MORE pain, seemingly worse than ever before. So, out came the "little white pills", and this time I gave him two as well as a Phenergan, for nausea, which always bring blessed sleep. The pain subsided......a little.
Tomorrow, we'll go back to the good pain doctor and probably an injection of steroids. This time, though, the pain is in an area of the back where it has never been .....around the T5 and T6 vertebrae. And so I worried.....could it be pneumonia??
And, I'm concerned. There is an odor......to his breath.....that I smelled way before I knew he had cancer. I later learned that it's an indication of Renal problems. Tonight, and last night, I smelled that same odor. His eyelids are his greatest telltale sign of dehydration, and they are beginning to show those signs, even though he drinks plenty of liquids.
I called the Cancer Center "on-call" doctor and she suggested that I take him to the nearest ER to be sure he doesn't have (1) Renal failure (2) another compression fracture (3) pneumonia. If there's a choice, I guess I'll take door number 2. There's a hospital nearby.....much closer than if we were at home.......but he "assures" me that he's better. I don't want to have to make this trip ......to an unknown hospital......in the middle of the night.
This time last year, when we first received the MM diagnosis, we were making these same kind of trips to the hospital. I didn't intend to mark the milestone with "celebratory" trips, this year. I thought things were really going good at our house because the knocking stopped, and then.......
That's sorta' how it can be, sometime....at our house with this thing called Multiple Myeloma and pain. Last Thursday, my honey went to the Driving Range to hit golf balls. This was his first such outing in several months. And ever since he (we) has paid the price, in pain.
Sunday was just an awful day - with regard to level of pain. Finally, around sunset (isn't that when it always gets worse) I called his Pain Management Specialist. Thank goodness, this is one of the doctors that will share his cell phone number (although this was my first call to him), and he also makes house calls!! He told me what to do to get the pain under control, and said he'd see him on Tuesday (Monday was a surgery day).
Monday turned out to be a pretty good day.....for both of us (well, if he's pain free.....I'm headache free!) Then came Tuesday and our appointment. Not that I wished my honey any pain, but wouldn't you know on a scale of 0 - 10......he was 0 that day! (Take the noisy car to the garage, and it's "knock-free", everytime!)
Anyway, things were good. Doc thought the Driving Range was an excellent idea as long as honey didn't overdo it. And, he also gave me permission to increase the dose of Dilaudid, if necessary. So, we walked away with a pat on the back, a bill, and new prescriptions. Since they are controlled substance drugs, we have to do this every three months, anyway.
And along came today. It started early this morning with pain and chills. He's usually cold, because of his anemia, but here was this knocking (pain), again! He requested "one of my little white pills" (dilaudid), which usually work their magic after about an hour. Two hours later, he was still in pain.....so I gave him another "little white pill", and then there was the headache.....so I administered two Tylenol. Finally he slept, and with sleep comes relief from pain.
He rested and slept, off and on, for most of the day....and then came late afternoon, again......and MORE pain, seemingly worse than ever before. So, out came the "little white pills", and this time I gave him two as well as a Phenergan, for nausea, which always bring blessed sleep. The pain subsided......a little.
Tomorrow, we'll go back to the good pain doctor and probably an injection of steroids. This time, though, the pain is in an area of the back where it has never been .....around the T5 and T6 vertebrae. And so I worried.....could it be pneumonia??
And, I'm concerned. There is an odor......to his breath.....that I smelled way before I knew he had cancer. I later learned that it's an indication of Renal problems. Tonight, and last night, I smelled that same odor. His eyelids are his greatest telltale sign of dehydration, and they are beginning to show those signs, even though he drinks plenty of liquids.
I called the Cancer Center "on-call" doctor and she suggested that I take him to the nearest ER to be sure he doesn't have (1) Renal failure (2) another compression fracture (3) pneumonia. If there's a choice, I guess I'll take door number 2. There's a hospital nearby.....much closer than if we were at home.......but he "assures" me that he's better. I don't want to have to make this trip ......to an unknown hospital......in the middle of the night.
This time last year, when we first received the MM diagnosis, we were making these same kind of trips to the hospital. I didn't intend to mark the milestone with "celebratory" trips, this year. I thought things were really going good at our house because the knocking stopped, and then.......
Monday, October 3, 2011
No celebrations ....just milestones
It isn't an anniversary, and it isn't a celebration ..... it's a milestone. The end of this week - Friday, to be exact, will be one year from the day that we learned that cancer had invaded our lives. Cancer. Just the mention of the word brings a shudder. Cancer. Not something that can happen in this family. Cancer. Who, us??? Cancer. Yes, us.
"Us". Bob, or my "honey", as I call him, is the one with the cancer ....but it's really "us". As our youngest daughter so aptly stated, cancer metastasizes to the entire family, so even though my honey has the cancer, we all feel the pain.
How did this happen? Why us? Why him? Why was he "chosen" to bear this burden of Multiple Myeloma? He often asks "Why me?" And, I don't know. Why him? Why does anyone get cancer?
Things have gotten so much better over these past 12 months. For some reason, it's much easier to think of it in "months" rather than a year. And, I'm not sure why. Maybe saying "months" doesn't make it seem so long.
Like childbirth - he seems not to remember those early days when there was so much pain. And for that\ I'm thankful, for it was terrible. (Those are memories I don't think I'll ever forget.) Just a few days ago, after months of being "easy" (not much pain) he decided that he'd try the Driving Range. For several days now he has paid the price, and brought me back to those days when we were battling days of pain.
I'm such a "things happen for a reason" and "God works in mysterious ways" type of person, so I have to think that God was trying to make us realize that we have it pretty easy, right now. Life is good. This is our "normal"...and it isn't bad. There are some who have it so much worse.
Life is good. It isn't a celebration. It's a milestone. It's cancer. We're just happy for every day.......whether it's good or bad. We've been given another day.
"Us". Bob, or my "honey", as I call him, is the one with the cancer ....but it's really "us". As our youngest daughter so aptly stated, cancer metastasizes to the entire family, so even though my honey has the cancer, we all feel the pain.
How did this happen? Why us? Why him? Why was he "chosen" to bear this burden of Multiple Myeloma? He often asks "Why me?" And, I don't know. Why him? Why does anyone get cancer?
Things have gotten so much better over these past 12 months. For some reason, it's much easier to think of it in "months" rather than a year. And, I'm not sure why. Maybe saying "months" doesn't make it seem so long.
Like childbirth - he seems not to remember those early days when there was so much pain. And for that\ I'm thankful, for it was terrible. (Those are memories I don't think I'll ever forget.) Just a few days ago, after months of being "easy" (not much pain) he decided that he'd try the Driving Range. For several days now he has paid the price, and brought me back to those days when we were battling days of pain.
I'm such a "things happen for a reason" and "God works in mysterious ways" type of person, so I have to think that God was trying to make us realize that we have it pretty easy, right now. Life is good. This is our "normal"...and it isn't bad. There are some who have it so much worse.
Life is good. It isn't a celebration. It's a milestone. It's cancer. We're just happy for every day.......whether it's good or bad. We've been given another day.
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