My weeks have been filled with treatment and, consequently, dealing with the side effects each brings. My neuropathy continues to get more pronounced, but my Stanford doctor has asked me to try to hang in there until March when he will see me and can evaluate my response. Acupuncture treatments do help some. They're not covered by medicare but I still try to go at least once a week.
Once a month I get all of my drugs and so it has taken a little time to determine which drug is causing me such severe side effects. Through email conversations with my Stanford doctor it has been determined that I am having a rather severe reaction to the Zometa (bisphosphonate). It was given over a longer infusion time of 1 hour this past week which did reduce the level of side effects, but we have decided to switch to a different one and this infusion may also be moved to a day that I'm not getting chemo.
Friday, February 10, was my big treatment day for this month. My blood work was done the week before and my white count was too low for treatment. So we had to travel to Chico on Wednesday and Thursday for neupogen shots to force my bone marrow to make more white blood cells. As it turned out, one shot would have been enough as my white count was really high on Friday and my red count was really low and was borderline for ordering a transfusion. Blood counts always get a lot lower in the succeeding days following treatment, so within a few days I could barely get around as my red count got really, really low. A CBC was done again on the 17th prior to treatment and I was glad that things had leveled out. Fortunately, I was only getting one chemo drug and my steroids, so shouldn't have as much difficulty this week.
In January I had a follow up appointment for the kyphoplasty done here in Redding in September. We took all the reports and CD's from the MRI's done at Stanford to this appointment with the local interventionl radiologist. He discovered that there is another compression fracture visible on the CD that the Stanford report did not mention. He showed me on a chart that this is the fracture that is causing my current discomfort. He does not want to do a procedure now either, but it means I have to wear the back brace again and am very limited again with what I can do. I am to contact him after I complete my treatment. He is hopeful that if I don't have to be in treatment too long, that there might be some healing without further procedures. However, the steroids I have to take every week interfere with the healing and the bone building from the bisphosphonate will take quite a bit of time before I experience much help with my bones.
After much consideration and prayer, I did go ahead and begin another semester of choir. Since my treatments are on Friday, I am feeling pretty good on Thursday. I was told again that I need to keep moving and keep my arms moving without lifting, so choir does satisfy those requirements. Also, in all the reading I have done about living with cancer, it is encouraged that a person have something they do that is not related to cancer cause cancer can and does end up consuming your life.
We have determined at this time that the protocol for stem cell transplant at Stanford would not be a good fit for me. We have asked for a referal to the transplant program at UC San Francisco and are waiting to hear from them.
Thank you for you email, notes, cards and phone calls. They always seem to come just when they are needed most. Your encouraging messages always lift our spirits. It is a constant battle to keep our spirits up when my side effects have to be dealt with on a weekly basis and there are sometimes just a few days of feeling like I can function. It is also a struggle for me to have lost so much independence. I am very dependent on Steve, or whoever I'm with, to lift things for me and to have an arm to hang onto when I walk so I don't fall. My feet are numb, my lower legs are numb, my vision is a little blurry, and my drugs make me dizzy enough that I sometimes feel like I'm on a boat, and I must not fall anymore as my back cannot take another injury. Other than that, I still have hair, although quite thin, and I still have a rosy glow to my cheeks compliments of my steroids.
Saturday, February 18, 2012
Friday, January 6, 2012
Conquering the Tube!
I'm sure everyone is wondering what we found out at Stanford this week and how I did with my MRI's.
The first MRI on Tuesday afternoon went quite well, in spite of the fact that I was given my sedation just 30 minutes prior to the procedure instead of the recommended 1 hour. We hadn't eaten lunch until we arrived at Stanford which was just before 3:00, so it didn't help that my stomach was full of food. However, I did really well and the tech was really good about talking to me through the microphone and keeping me informed of each step and how long it would take. A friend from my support group said it really helped her to cover her eyes with something so she wouldn't be tempted to open them and then see how close around her everything was. I took her advice and covered my eyes with a handkerchief. I tried not think about the correlation to a firing squad! I did have one brief moment of panic when I realized I was entering the tube before 4:30, the time I had asked everyone to pray. But I took a deep breath and in my mind sang the words to the hymn "Abide with me....". Of course, I only remembered the first verse, but it was enough to keep me occupied for the next 45 minutes. For those who have never had an MRI, those things are NOISY! Ear plugs are required and provided and they are still noisy. I soon realized that I was singing louder in my mind as the machine got noisier! One thing that helped, too, was that I didn't feel the edges of the tube touching me which would not have been a good thing for me. The tech's assistant didn't quite know what to think when I was finished and he came to help me off the skinny little table and I lifted one side of my handkerchief and said "peek-a-boo!" I was just practicing for the next event of the day - a visit with our little granddaughters. We headed on down the road with everyone else vacating the city at 5:00 pm on our way to Jen and Jeff's where we spent the night. I was really sleepy all evening and slept really well all night and was still tired the next morning from the sedation I was given. Jeff is still laughing cause I fell asleep in the middle of a sentence when I was sitting on their comfy couch talking to him!
Just as we were leaving Jen's Wednesday morning, this dizzy gal with the numb feet took another fall. Fortunately, the steps were shallow, the fall was onto their wooden deck and I landed on my side not my bum. Having shoes on spared my ankles from serious sprain. There was some hyper-extension, pulling and bruising to the bottoms of my feet. Jen quickly got an ice pack and ace bandage and I was able to ice and elevate as we drove back to Stanford. Walking was difficult that day, but I managed with slow, rather stiff strides. I was able to ice and elevate again that evening when we visited our friends in Mountain View for dinner and then again in the motel that night and Thursday morning. Felt much better on Thursday, although still a bit sore.
After the fall, it was back to Stanford on Wednesday morning for appointments with various people in the transplant department which lasted from 11:30 to 3:00, again leaving us with a "lick and swallow" lunch just before my check in time of 3:30 for my next MRI. My sedation was given earlier this time and my procedure a little delayed so I was really relaxed. My tech was very nice but not quite as talkative. It did help both days that the initial images took about 30 minutes then they brought me out for an IV of contrast for the final 10-15 minutes of images.
Thursday morning at 8 am we met with the Interventional Radiologist and his nurse coordinator. There was another compression fracture found in the upper lumbar region and there was evidence of small patches of myeloma throughout my bone marrow. There are also degenerative discs which could be caused by aging or as a result of all the compression fractures. He didn't want to do anymore procedures right now so that I can continue in treatment without further interruption. There have been too many interruptions over the past 6 months which has not afforded the consistency that is needed. We talked about options for pain control and he highly recommended some specialized physical therapy. This is something I've been asking about for several months. His nurse coordinator will include this info in her follow-up letter to my local oncologist so it can be ordered. There is an excellent physical therapist in Anderson, so am hopeful he will have the expertise that is required for my situation.
In answer to my questions, the radiologist explained why he preferred vertebroplasty over kyphoplasty. After much research and many tests, they have found that vertebroplasty gives a better long term result for myeloma patients. Also, the two different processes create very different environments in the vertebrae. Even though the inside of the vertebrae have thinned out significantly to the point of collapse, there are still bony structures there providing some support. This is an important consideration when repair is made in a myeloma patient. Vertebroplasty fills in all the space around the bony structures giving them added support and filling all of the vertebral cavity. It is an easier procedure and doesn't require as much sedation. Kyphoplasty is a much more involved procedure requiring a larger incision and more sedation. A balloon is inserted into the vertebra to make a space where a "ball" of cement is then inserted (that's what it looked like on the MRI today). It doesn't completely fill the space leaving the outer edges still vulnerable to collapse and when the balloon is inserted it crushes all of those important bony structures.
Before we left we made my follow up appointment with the neurosurgeon. Between his schedule and mine, I won't be seeing him until March 5.
We are still processing all of the info from the meeting with the transplant department and have a notebook full of information we are to read through, so I will share more about that in a later post. In the meantime, you can continue to pray for us as we make this decision.
Thanks to your faithful prayers I conquered the tube!!
The first MRI on Tuesday afternoon went quite well, in spite of the fact that I was given my sedation just 30 minutes prior to the procedure instead of the recommended 1 hour. We hadn't eaten lunch until we arrived at Stanford which was just before 3:00, so it didn't help that my stomach was full of food. However, I did really well and the tech was really good about talking to me through the microphone and keeping me informed of each step and how long it would take. A friend from my support group said it really helped her to cover her eyes with something so she wouldn't be tempted to open them and then see how close around her everything was. I took her advice and covered my eyes with a handkerchief. I tried not think about the correlation to a firing squad! I did have one brief moment of panic when I realized I was entering the tube before 4:30, the time I had asked everyone to pray. But I took a deep breath and in my mind sang the words to the hymn "Abide with me....". Of course, I only remembered the first verse, but it was enough to keep me occupied for the next 45 minutes. For those who have never had an MRI, those things are NOISY! Ear plugs are required and provided and they are still noisy. I soon realized that I was singing louder in my mind as the machine got noisier! One thing that helped, too, was that I didn't feel the edges of the tube touching me which would not have been a good thing for me. The tech's assistant didn't quite know what to think when I was finished and he came to help me off the skinny little table and I lifted one side of my handkerchief and said "peek-a-boo!" I was just practicing for the next event of the day - a visit with our little granddaughters. We headed on down the road with everyone else vacating the city at 5:00 pm on our way to Jen and Jeff's where we spent the night. I was really sleepy all evening and slept really well all night and was still tired the next morning from the sedation I was given. Jeff is still laughing cause I fell asleep in the middle of a sentence when I was sitting on their comfy couch talking to him!
Just as we were leaving Jen's Wednesday morning, this dizzy gal with the numb feet took another fall. Fortunately, the steps were shallow, the fall was onto their wooden deck and I landed on my side not my bum. Having shoes on spared my ankles from serious sprain. There was some hyper-extension, pulling and bruising to the bottoms of my feet. Jen quickly got an ice pack and ace bandage and I was able to ice and elevate as we drove back to Stanford. Walking was difficult that day, but I managed with slow, rather stiff strides. I was able to ice and elevate again that evening when we visited our friends in Mountain View for dinner and then again in the motel that night and Thursday morning. Felt much better on Thursday, although still a bit sore.
After the fall, it was back to Stanford on Wednesday morning for appointments with various people in the transplant department which lasted from 11:30 to 3:00, again leaving us with a "lick and swallow" lunch just before my check in time of 3:30 for my next MRI. My sedation was given earlier this time and my procedure a little delayed so I was really relaxed. My tech was very nice but not quite as talkative. It did help both days that the initial images took about 30 minutes then they brought me out for an IV of contrast for the final 10-15 minutes of images.
Thursday morning at 8 am we met with the Interventional Radiologist and his nurse coordinator. There was another compression fracture found in the upper lumbar region and there was evidence of small patches of myeloma throughout my bone marrow. There are also degenerative discs which could be caused by aging or as a result of all the compression fractures. He didn't want to do anymore procedures right now so that I can continue in treatment without further interruption. There have been too many interruptions over the past 6 months which has not afforded the consistency that is needed. We talked about options for pain control and he highly recommended some specialized physical therapy. This is something I've been asking about for several months. His nurse coordinator will include this info in her follow-up letter to my local oncologist so it can be ordered. There is an excellent physical therapist in Anderson, so am hopeful he will have the expertise that is required for my situation.
In answer to my questions, the radiologist explained why he preferred vertebroplasty over kyphoplasty. After much research and many tests, they have found that vertebroplasty gives a better long term result for myeloma patients. Also, the two different processes create very different environments in the vertebrae. Even though the inside of the vertebrae have thinned out significantly to the point of collapse, there are still bony structures there providing some support. This is an important consideration when repair is made in a myeloma patient. Vertebroplasty fills in all the space around the bony structures giving them added support and filling all of the vertebral cavity. It is an easier procedure and doesn't require as much sedation. Kyphoplasty is a much more involved procedure requiring a larger incision and more sedation. A balloon is inserted into the vertebra to make a space where a "ball" of cement is then inserted (that's what it looked like on the MRI today). It doesn't completely fill the space leaving the outer edges still vulnerable to collapse and when the balloon is inserted it crushes all of those important bony structures.
Before we left we made my follow up appointment with the neurosurgeon. Between his schedule and mine, I won't be seeing him until March 5.
We are still processing all of the info from the meeting with the transplant department and have a notebook full of information we are to read through, so I will share more about that in a later post. In the meantime, you can continue to pray for us as we make this decision.
Thanks to your faithful prayers I conquered the tube!!
Thursday, December 29, 2011
Closer to the earth
The New Year is nearly upon us and with it brings multiple appointments at Stanford the 1st week of January.
The pain and muscle spasms in my back and around my ribs have increased over the past few weeks. I'm feeling like the earth is rising up to meet me, which was verified by a loss of another 1/4" in height. Finally reached the nurse coordinator for the neuroscience department at Stanford and explained my new symptoms. This generated a number of phone calls and scheduling. An MRI of my thoracic and lumbar spine is scheduled for next week. This will not be in an "open" machine, but in the "tube". Their opinion is that the open MRI's are not as accurate and they never take images of the lumbar spine in open machines. All of my previous MRI's done locally were done in open machines and maybe that explains why there wasn't more concern over the one done last August - it wasn't showing all that was happening.
So now I face the "tube" and it isn't the TV or anything related to the internet. Closeness does not begin to describe the environment and closeness is not a friend of claustrophobics! It will take 1 1/2 hours for them to take their images. In addition to a request for sedation, it has been determined that it would be best to break it into 2 sessions, each lasting about 45 minutes. Since they are trying to get me in as soon as possible and with another holiday weekend ahead, these 2 sessions will have to be on two different days. The first will be Tuesday afternoon and the second will be Wednesday afternoon, January 3 and 4. I will enter the "tube" at 4:30 each day and covet prayers for the closeness of Christ and not the closeness of what surrounds me!!
An appointment has been scheduled for 8 am Thursday morning, January 5, for possible back procedure if more repair is needed after the MRI reports are read.
I'm thankful these appointments could be made around my already scheduled appointment on Wednesday, January 4, with the transplant department. These appointments are scheduled for 11:30 am and 1:00 pm. Wednesday will be a long day.
We will probably travel back and forth some to Jen's which is a little over an hour south of Stanford. However, Wednesday night will probably be spent at a nearby motel so we can easily get to the 8 am appointment on Thursday morning. When you are traveling around a large metropolitan area, commuter traffic always has to be taken into consideration.
My initial dose of Cytoxan was postponed until Monday, December 27. I was glad I didn't have to deal with it over the Christmas weekend so I could enjoy my family. Part of the reason for the delay, however, was due to a bad burn I got on the inside of my wrist 2 weeks earlier. It was healing up just fine until I had the second dose of Velcade on the 22nd. It looked infected and angry on Friday morning, so a trip to the walk-in clinic provided antibiotic ointment and pills, and a culture done to rule our Staph and MRSA infections. My local oncologist wanted me to give it a couple of days to respond to the medication before taking the Cytoxan. It is healing up nicely now.
I got along fairly well with the first dose of Cytoxan by following all of the suggestions given by the pharmacist. Over the past few days there has been a noticeable increase in my neuropathy. My feet are very numb and the numbness is traveling up my legs to my knees now. The numbness in my fingers has increased and there is some numbness in my face and lips. Everything is still functioning, although, I am noticing that my legs aren't quite as reliable. My hair was already thinning from the Velcade, but today I noticed that it is breaking off close to my scalp in places. Tomorrow is an appointment with a wig specialist.
Your words of encouragement and prayers on our behalf sustain us! We pray blessings will be returned to you for your faithfulness to us.
The pain and muscle spasms in my back and around my ribs have increased over the past few weeks. I'm feeling like the earth is rising up to meet me, which was verified by a loss of another 1/4" in height. Finally reached the nurse coordinator for the neuroscience department at Stanford and explained my new symptoms. This generated a number of phone calls and scheduling. An MRI of my thoracic and lumbar spine is scheduled for next week. This will not be in an "open" machine, but in the "tube". Their opinion is that the open MRI's are not as accurate and they never take images of the lumbar spine in open machines. All of my previous MRI's done locally were done in open machines and maybe that explains why there wasn't more concern over the one done last August - it wasn't showing all that was happening.
So now I face the "tube" and it isn't the TV or anything related to the internet. Closeness does not begin to describe the environment and closeness is not a friend of claustrophobics! It will take 1 1/2 hours for them to take their images. In addition to a request for sedation, it has been determined that it would be best to break it into 2 sessions, each lasting about 45 minutes. Since they are trying to get me in as soon as possible and with another holiday weekend ahead, these 2 sessions will have to be on two different days. The first will be Tuesday afternoon and the second will be Wednesday afternoon, January 3 and 4. I will enter the "tube" at 4:30 each day and covet prayers for the closeness of Christ and not the closeness of what surrounds me!!
An appointment has been scheduled for 8 am Thursday morning, January 5, for possible back procedure if more repair is needed after the MRI reports are read.
I'm thankful these appointments could be made around my already scheduled appointment on Wednesday, January 4, with the transplant department. These appointments are scheduled for 11:30 am and 1:00 pm. Wednesday will be a long day.
We will probably travel back and forth some to Jen's which is a little over an hour south of Stanford. However, Wednesday night will probably be spent at a nearby motel so we can easily get to the 8 am appointment on Thursday morning. When you are traveling around a large metropolitan area, commuter traffic always has to be taken into consideration.
My initial dose of Cytoxan was postponed until Monday, December 27. I was glad I didn't have to deal with it over the Christmas weekend so I could enjoy my family. Part of the reason for the delay, however, was due to a bad burn I got on the inside of my wrist 2 weeks earlier. It was healing up just fine until I had the second dose of Velcade on the 22nd. It looked infected and angry on Friday morning, so a trip to the walk-in clinic provided antibiotic ointment and pills, and a culture done to rule our Staph and MRSA infections. My local oncologist wanted me to give it a couple of days to respond to the medication before taking the Cytoxan. It is healing up nicely now.
I got along fairly well with the first dose of Cytoxan by following all of the suggestions given by the pharmacist. Over the past few days there has been a noticeable increase in my neuropathy. My feet are very numb and the numbness is traveling up my legs to my knees now. The numbness in my fingers has increased and there is some numbness in my face and lips. Everything is still functioning, although, I am noticing that my legs aren't quite as reliable. My hair was already thinning from the Velcade, but today I noticed that it is breaking off close to my scalp in places. Tomorrow is an appointment with a wig specialist.
Your words of encouragement and prayers on our behalf sustain us! We pray blessings will be returned to you for your faithfulness to us.
Wednesday, December 21, 2011
Cytoxin for Christmas
Finally back in treatment. Began last Thursday, the 15th, with the same drug I've been on, Velcade. This week the new one will be added, Cytoxin; an old standby that is used for many different types of cancer. The new drugs are more targeted for specific cancers. The older drugs are more generalized causing the well-known side effects of nausea and hair loss. I've escaped both of these side effects with only minimal problems. However, I have had and continue to have, a great deal of difficulty with neuropathy. We're praying I will feel well enough following treatment Thursday to enjoy Christmas with our family.
The last few weeks have been a difficult time of waiting and wondering how much more damage the cancer was doing to my spine without treatment. My Stanford doctor even called again the first week of December to see how I was doing on the new treatment. I think he was a little surprised that my local doctor was not going to begin treatment again until he saw me and that appointment wasn't for another 2 weeks, December 15.
Following last week's treatment, I began to have a lot of muscle spasms and pain in my lower back and had the feeling that the muscles in my upper back were being pulled down. There was also an "icy-hot" feeling in the upper muscles. We were concerned that this might be a sign the lumbar vertebrae were beginning to collapse; or, this weakness could have been a side effect of the high dose steroids I have to take on treatment day, as I have improved some. However, I do lay down a couple of times a day to let those muscles relax and I have been doing some improvised traction on my back. I lay flat (as flat as I can) and pull on something with my hands while Steve gently pulls on my ankles. This seems to relieve the pain and spasms almost immediately.
Our household is a busy place as we prepare for Christmas and I try to pace myself. Johanna is home and Jen and family arrived last night. It's agonizing not to be able pick up and hold my little granddaughters! But I have strict limits on lifting.
Many blessings to our family and friends as you celebrate the birth of our Saviour, the One whose Hand I cling to.
The last few weeks have been a difficult time of waiting and wondering how much more damage the cancer was doing to my spine without treatment. My Stanford doctor even called again the first week of December to see how I was doing on the new treatment. I think he was a little surprised that my local doctor was not going to begin treatment again until he saw me and that appointment wasn't for another 2 weeks, December 15.
Following last week's treatment, I began to have a lot of muscle spasms and pain in my lower back and had the feeling that the muscles in my upper back were being pulled down. There was also an "icy-hot" feeling in the upper muscles. We were concerned that this might be a sign the lumbar vertebrae were beginning to collapse; or, this weakness could have been a side effect of the high dose steroids I have to take on treatment day, as I have improved some. However, I do lay down a couple of times a day to let those muscles relax and I have been doing some improvised traction on my back. I lay flat (as flat as I can) and pull on something with my hands while Steve gently pulls on my ankles. This seems to relieve the pain and spasms almost immediately.
Our household is a busy place as we prepare for Christmas and I try to pace myself. Johanna is home and Jen and family arrived last night. It's agonizing not to be able pick up and hold my little granddaughters! But I have strict limits on lifting.
Many blessings to our family and friends as you celebrate the birth of our Saviour, the One whose Hand I cling to.
Friday, December 2, 2011
A New Perspective
My local doctor and my Stanford doctor finally finished their game of phone tag this morning and had a conversation regarding my condition and treatment options. Following their conversation, my local doctor called me. It was stated again how difficult it is to track my particular form of myeloma. An appointment has been made for an interview with the stem-cell transplant team at Stanford for consideration of this procedure. I was initially told I had questionable genetic markers for success and that I would probably do just as well battling the disease with all the new drugs that were being developed. I guess in the past 3 1/2 years, there are a couple more markers they now look at and those are both on the positive side for me. It is a grueling procedure taking several months and then I would have to be extremely careful until my system rebuilt itself. Also, I would have to have all of my innoculations again, such polio, whooping cough, diptheria, measles, etc. It is unknown how long it actually takes each individual to get back to "normal". One thing we do know, is that you never completely get rid of this type of cancer since it is located at the stem cell level in your bone marrow. So eventhough you have really strong chemo to try to destroy as much of the cancer as possible before they harvest the stem cells, those stem cells may still have residual cancer. It is not a cure; it just buys time. We will have more information after our initial appointment with the transplant department on January 4.
In the meantime, I will see my local doctor on December 15 and he will go over the new treatment plan which will commence as soon as possible. This will reduce the cancer load and keep me stabilized for now.
I have had good recovery from the repair done on the 2 thoracic vertebrae the day before Thanksgiving. I am out of the back brace and able to function more. I still have 3 fractures in the lumbar area that need attention and I do want to have them repaired before I lose anymore height. The discomfort and pain from them is not as severe, but it does increase the more I'm on my feet during the day. It is really strange adjusting to a shorter height after a lifetime being a particular height and your world revolving around that perspective. Now the table top is closer when I sit down; the kitchen counter is higher; I can't reach things in the cupboards that I always could reach before; realizing when you drive the car that you have to adjust the mirrors from where they've always been; your clothes fitting differently.
Tomorrow is our monthly Myeloma Support group meeting. Two years ago this month the group began with 3 people. There will be 28 of us there tomorrow. We are having a social time this month so we can get to know one another better as individuals not just cancer patients and have an opportunity to meet spouses or caregivers that don't always attend our meetings. The coffee shop where we meet will serve a light brunch and I've been busy planning some "get acquainted" games today and arranging some Christmas decorations for the room. Through a contact with one of the pharmaceutical reps, I was able to get a sponsor for our meeting who will pay for our food.
In the meantime, I will see my local doctor on December 15 and he will go over the new treatment plan which will commence as soon as possible. This will reduce the cancer load and keep me stabilized for now.
I have had good recovery from the repair done on the 2 thoracic vertebrae the day before Thanksgiving. I am out of the back brace and able to function more. I still have 3 fractures in the lumbar area that need attention and I do want to have them repaired before I lose anymore height. The discomfort and pain from them is not as severe, but it does increase the more I'm on my feet during the day. It is really strange adjusting to a shorter height after a lifetime being a particular height and your world revolving around that perspective. Now the table top is closer when I sit down; the kitchen counter is higher; I can't reach things in the cupboards that I always could reach before; realizing when you drive the car that you have to adjust the mirrors from where they've always been; your clothes fitting differently.
Tomorrow is our monthly Myeloma Support group meeting. Two years ago this month the group began with 3 people. There will be 28 of us there tomorrow. We are having a social time this month so we can get to know one another better as individuals not just cancer patients and have an opportunity to meet spouses or caregivers that don't always attend our meetings. The coffee shop where we meet will serve a light brunch and I've been busy planning some "get acquainted" games today and arranging some Christmas decorations for the room. Through a contact with one of the pharmaceutical reps, I was able to get a sponsor for our meeting who will pay for our food.
Your prayers sustain us especially when we have difficult days. We feel so blessed that so many take time to remember us in their thoughts and prayers. I often wonder how people who do not have the security of faith in Christ deal with life-threatening events.
Thursday, November 24, 2011
A day of Thankfulness
We received a phone call Tuesday morning telling us my procedure on Wednesday had been moved to 6 am. We were already planning to drive to the city Tuesday evening and spend the night, so were glad to actually have the earlier time.
The procedure on my back went well. It was a much better experience than the one done here locally in September. It went so much smoother and I wasn't given as much sedation, so recovery has been easier. The doctor who did the procedure was doing a Fellowship and was supervised by the senior doctor. He had a gentle touch and did so well. I missed talking with the senior doctor afterward as I was in the restroom dressing when he came out and talked to Steve. He said they had to use a lot of cement to fill the cavities the cancer had caused on the 2 vertebrae.
We were so thankful they would allow me to ride home that afternoon; however, I had to have the seat completely reclined and not sit upright, and Steve was instructed not to hit any potholes. :) I was released around noon, so we were glad we could get out of the city before the holiday traffic got too heavy. Although, we still hit some really slow spots. I slept part of the time and when I got too uncomfortable we would stop so I could walk around a little.
My doctor from Stanford finally called Tuesday evening as we were driving down to the city. We had a good long chat. He told me again what a difficult case I present. Not only the rarity of non-secretory myeloma, but the difficulty in tracking it's progress. In the big picture of myeloma the information they use to try to track my cancer does not adequately indicate the activity level of the disease in my body. Although I know the numbers are high for me, they are not really all that high for normal cases. There seems to have developed a concentration of myeloma activity in my spine, producing what are called plasmacytomas, or "soft" tumors in the bone. Basically, it's an area where the cancer is destroying the bone. We talked of treatment options at length and he will call my Chico doctor with instructions for a different "cocktail" of drugs to try. He has a number of clinical trials he is supervising, but I don't meet the criteria for any of them. Also, there are several new drugs that will be available next year if we can find something to stabilize me for now. We also talked about options for monitoring my condition and trying to maintain a better handle on what is going on, if that's possible.
We know that your prayers have made a difference! My procedure went well; things are no longer at a standstill; there is a plan for further treatment. Your calls, notes, love and prayers have brought great comfort. We are blessed!
We will enjoy Thanksgiving dinner at Jeremy's this afternoon with his inlaws and Johanna, who is driving home this morning. I love cooking and entertaining, but what a joy to have our kids take on the turkey this year! Jen and Jeff are cooking their first turkey, too, and have invited others from his work that cannot be with their families either. Jesse and Lyn are in Portland with her family.
May we all find many things to be thankful for today and everyday throughout the year.
The procedure on my back went well. It was a much better experience than the one done here locally in September. It went so much smoother and I wasn't given as much sedation, so recovery has been easier. The doctor who did the procedure was doing a Fellowship and was supervised by the senior doctor. He had a gentle touch and did so well. I missed talking with the senior doctor afterward as I was in the restroom dressing when he came out and talked to Steve. He said they had to use a lot of cement to fill the cavities the cancer had caused on the 2 vertebrae.
We were so thankful they would allow me to ride home that afternoon; however, I had to have the seat completely reclined and not sit upright, and Steve was instructed not to hit any potholes. :) I was released around noon, so we were glad we could get out of the city before the holiday traffic got too heavy. Although, we still hit some really slow spots. I slept part of the time and when I got too uncomfortable we would stop so I could walk around a little.
My doctor from Stanford finally called Tuesday evening as we were driving down to the city. We had a good long chat. He told me again what a difficult case I present. Not only the rarity of non-secretory myeloma, but the difficulty in tracking it's progress. In the big picture of myeloma the information they use to try to track my cancer does not adequately indicate the activity level of the disease in my body. Although I know the numbers are high for me, they are not really all that high for normal cases. There seems to have developed a concentration of myeloma activity in my spine, producing what are called plasmacytomas, or "soft" tumors in the bone. Basically, it's an area where the cancer is destroying the bone. We talked of treatment options at length and he will call my Chico doctor with instructions for a different "cocktail" of drugs to try. He has a number of clinical trials he is supervising, but I don't meet the criteria for any of them. Also, there are several new drugs that will be available next year if we can find something to stabilize me for now. We also talked about options for monitoring my condition and trying to maintain a better handle on what is going on, if that's possible.
We know that your prayers have made a difference! My procedure went well; things are no longer at a standstill; there is a plan for further treatment. Your calls, notes, love and prayers have brought great comfort. We are blessed!
We will enjoy Thanksgiving dinner at Jeremy's this afternoon with his inlaws and Johanna, who is driving home this morning. I love cooking and entertaining, but what a joy to have our kids take on the turkey this year! Jen and Jeff are cooking their first turkey, too, and have invited others from his work that cannot be with their families either. Jesse and Lyn are in Portland with her family.
May we all find many things to be thankful for today and everyday throughout the year.
Friday, November 18, 2011
C..R..U..M..B..L..I..N..G
I have had good intentions of posting updated info every day this week, but each day has presented new situations so rapidly that I kept thinking I'll wait until things have solidified. However, that hasn't happened yet, and things have continued to get worse each day. So here is where things stand for now.
My CT scan and follow-up appointment on Monday with the neurosurgeon at Stanford was the first disappointment this week. The cancer has completely infiltrated my vertebrae and there are 5 more compression fractures causing me to lose another 1" in height. My vertibrae are quickly crumbling. Two need to be repaired right away as they are in the thoracic area and I already have one vertebra that collapsed prior to the kyphoplasty done in September here locally. This collapse has left me unable to stand up straight and has caused other problems with muscle spasms and difficulty with my throat (swallowing and vocal cords) due to the misalignment. So, on Wednesday, the day before Thanksgiving, I will be at Stanford having additional kyphoplasty. That is the plan anyway. My lab work done last Friday at chemo in Chico is such that my numbers may not be adquate for them to do the procedure. Until further repair can be made to my spine, I have to continue to wear the back brace full time and be especially careful.
I was supposed to receive a call from my oncologist at Stanford this week regarding my current state of affairs, but he never called.
I was scheduled for chemo in Chico today and saw the oncologist there prior to my treatment. My cancer numbers had gone up so dramatically and my blood counts dropped to the point that he said the current medication and dosage had lost its effectiveness and there was no point in continuing. He also has tried to make contact with my doctor at Stanford this week and his calls were not returned either. He assured me he would talk to them first thing Monday morning to see what their recommendation is for further treatment. He said alternate treatment must commence a.s.a.p. My blood counts are already really close to the low threshold of viability for treatment and the cancer is increasing rapidly. His recommendations would require use of older type chemo drugs and several days in the hospital during treatment. There would be hair loss, nausea and other more severe side effects as was seen in earlier days of cancer treatment.
He also gave us the name of a doctor at UCLA that only treats myeloma patients and made the suggestion that we might want to see him for a second opinion if we weren't opposed to travelling that distance. Also, there is a new drug that is supposed to be approved mid-2012 and there are some places that early access is available. He might be one of those locations as there are now several available in S. Cal.
In the meantime, Steve & I are trying to prayerfully process all of this latest information and waiting to talk further with our kids until we we know more about what the future holds at this point. Today (Friday) was Holly's and Ty's birthdays and we plan for a family celebration within the next days. We need some happy times together without more discouraging news for them. Holly just returned from her Grandma's funeral who died of cancer last week. We want to delay putting anymore stress on their little family as long as possible.
I am not saying anything to my choir families either at this point until I know exactly what is going to happen. I do have a couple of people who I can call on to finish out the semester and the concert if I am unable to do it.
All I can say is we need a miracle!
My CT scan and follow-up appointment on Monday with the neurosurgeon at Stanford was the first disappointment this week. The cancer has completely infiltrated my vertebrae and there are 5 more compression fractures causing me to lose another 1" in height. My vertibrae are quickly crumbling. Two need to be repaired right away as they are in the thoracic area and I already have one vertebra that collapsed prior to the kyphoplasty done in September here locally. This collapse has left me unable to stand up straight and has caused other problems with muscle spasms and difficulty with my throat (swallowing and vocal cords) due to the misalignment. So, on Wednesday, the day before Thanksgiving, I will be at Stanford having additional kyphoplasty. That is the plan anyway. My lab work done last Friday at chemo in Chico is such that my numbers may not be adquate for them to do the procedure. Until further repair can be made to my spine, I have to continue to wear the back brace full time and be especially careful.
I was supposed to receive a call from my oncologist at Stanford this week regarding my current state of affairs, but he never called.
I was scheduled for chemo in Chico today and saw the oncologist there prior to my treatment. My cancer numbers had gone up so dramatically and my blood counts dropped to the point that he said the current medication and dosage had lost its effectiveness and there was no point in continuing. He also has tried to make contact with my doctor at Stanford this week and his calls were not returned either. He assured me he would talk to them first thing Monday morning to see what their recommendation is for further treatment. He said alternate treatment must commence a.s.a.p. My blood counts are already really close to the low threshold of viability for treatment and the cancer is increasing rapidly. His recommendations would require use of older type chemo drugs and several days in the hospital during treatment. There would be hair loss, nausea and other more severe side effects as was seen in earlier days of cancer treatment.
He also gave us the name of a doctor at UCLA that only treats myeloma patients and made the suggestion that we might want to see him for a second opinion if we weren't opposed to travelling that distance. Also, there is a new drug that is supposed to be approved mid-2012 and there are some places that early access is available. He might be one of those locations as there are now several available in S. Cal.
In the meantime, Steve & I are trying to prayerfully process all of this latest information and waiting to talk further with our kids until we we know more about what the future holds at this point. Today (Friday) was Holly's and Ty's birthdays and we plan for a family celebration within the next days. We need some happy times together without more discouraging news for them. Holly just returned from her Grandma's funeral who died of cancer last week. We want to delay putting anymore stress on their little family as long as possible.
I am not saying anything to my choir families either at this point until I know exactly what is going to happen. I do have a couple of people who I can call on to finish out the semester and the concert if I am unable to do it.
All I can say is we need a miracle!
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