It seems I am seeing many doctors again and having tests and evaluations done again that were completed during my initial diagnosis phase. Follow-up to assess my current status. Today was an echocardiogram to monitor the heart murmur that was discovered which is actually the beginning of a leaking valve. Very minimal at initial diagnosis. Need to determine if there has been a change or if it is stable. When I am able in a few months, I will have another stress test, also, for my heart.
Also, today was a DEXA bone scan which will determine the mineral content of my bones. It will tell how extensive the osteoporsis is that was discovered in my spine during assessment for fractures with MRI and CT.
I am scheduled for a procedure called kyphoplasty on Sept. 16, just a few days after returning from our trip to Minnesota. I cannot have any chemo related drugs for 2 weeks prior or 2 weeks following this procedure. So, the next round of chemo will begin Oct. 7. Also, that week on Monday, Oct. 3, I am scheduled for my monthly IVIG. Tuesday I will see my Stanford doctor. Thursday is choir practice. Friday will be chemo in Chico and I will see my new doc there that day, also. AND, that is the week our new little granddaughter is due! I'm sending her my schedule to see how we can coordinate our timing! :)
I'm assuming the insurance has approved continued IVIG treatments as the orders were sent to the hospital from my doctor and they called me to schedule for this Friday, Sept 2, the day before I leave.
Yes, Minnesota. Steve's 50th high school reunion. He and Jesse left on their motorcycles yesterday and are having the great adventure of the open road and male bonding it provides. Check off one item on Steve's bucket list. Next will be an item on my bucket list. Lyn, Jesse's wife, and I will fly out on Saturday for 10 days. Yes, the radiologist told me I could make this trip. He said I might as well enjoy myself while I'm waiting on my procedure. I was given lots of instructions or maybe I should say restrictions. Looking forward to seeing all our Minnesota family in a few days!
My summer wardrobe was all in place to make packing for our travels an easy task and often fitting into a carry on bag. However, the articles of clothing required for my brace have complicated that task and I've been trying to shop and figure out what I have that will give me the layers I need and yet not be too warm. But it's hard not to be warm with shirt, the brace and an overshirt. The brace itself is quite warm to wear. After the heat they have experienced this summer in Minnesota, it's hard to know what the weather will do the first 2 weeks of September. I don't think a carry-on is going to be happening. I can't lift much of anything anyway and am grateful for Lyn's assistance with this trip. Not to mention how much I will enjoy her company as we travel.
I was grateful to my friend Barbara who drove me to my most recent Stanford appointment last week. We yakked non stop all day! As we were visiting with the nurse during my treatment she asked if we were going shopping and we replied "Yes! At the Music Store!" Barbara was the director of the choir when I was the accompanist. She now directs her church choir and was glad for an opportunity to shop for music for her choirs. We had a great time and it was a day that blessed me at a time I've been a bit discourage with the recent turn of events with my condition.
Thank you for your cards, calls and emails of encouragement and reasurance of prayers on our behalf. They truly encourage and bless us! Today's post will give you prayer focus in the weeks ahead. Thank you for your faithfulness to us!
Tuesday, August 30, 2011
Friday, August 19, 2011
Early Tuesday morning found me flat on my back on a hard surface listening the clunk and clank of the magnet in the MRI machine. An agonizing hour later, I was moved to the CT scan for further study. My back was really sore for a couple of days afterward.
We picked up the reports on Thursday morning so we would have them for the new hematologist we were meeting in Chico on Thursday afternoon. We are very pleased with this new doctor and grateful to Stanford for recommending him. He was quite distressed over the condition of my spine overall, not just the fractures. The good news is the weakened bones are from all the drugs I've had to take for the cancer and not from the cancer.
I will make one more trip to Stanford on Monday for another dose of chemo. Mid-September everything will be set up for me to begin my treatments in Chico under the supervision of my new doctor there.
Early next Tuesday morning, I will meet with the Interventional Radiologist and see what he recommends for my fractures. We are most anxious to hear his opinion.
I got along pretty well with my treatment this week. Fatigue has been an issue and yet I haven't slept well.
Today I met with my immunologist. He is sending an order to the hospital for the monthly IVIG to continue and we're hopeful the insurance company will give approval for another year. He has been a key member of my health care team. He not only understands my need to be a "germophobe", he encourages it as a means to maintaining my health.
More tests are in the near future: Bone density scan, extensive and specialized blood tests, follow-up with cardiologist to verify that my heart is managing all the chemo and drugs ok.
My address book truly is full of names that all end in MD!!!
We are so grateful for the continued prayer support for each need as it arises.
We picked up the reports on Thursday morning so we would have them for the new hematologist we were meeting in Chico on Thursday afternoon. We are very pleased with this new doctor and grateful to Stanford for recommending him. He was quite distressed over the condition of my spine overall, not just the fractures. The good news is the weakened bones are from all the drugs I've had to take for the cancer and not from the cancer.
I will make one more trip to Stanford on Monday for another dose of chemo. Mid-September everything will be set up for me to begin my treatments in Chico under the supervision of my new doctor there.
Early next Tuesday morning, I will meet with the Interventional Radiologist and see what he recommends for my fractures. We are most anxious to hear his opinion.
I got along pretty well with my treatment this week. Fatigue has been an issue and yet I haven't slept well.
Today I met with my immunologist. He is sending an order to the hospital for the monthly IVIG to continue and we're hopeful the insurance company will give approval for another year. He has been a key member of my health care team. He not only understands my need to be a "germophobe", he encourages it as a means to maintaining my health.
More tests are in the near future: Bone density scan, extensive and specialized blood tests, follow-up with cardiologist to verify that my heart is managing all the chemo and drugs ok.
My address book truly is full of names that all end in MD!!!
We are so grateful for the continued prayer support for each need as it arises.
Friday, August 12, 2011
Hands Free Straight Jacket
I received the results of my x-rays on Wednesday morning and they revealed a sad tale regarding the condition of my back. There are 2 compression fractures in the vertebrae and other issues developing as a result. I am experiencing more pain and discomfort. My primary doc referred me to an Interventional Radiologist. I was seen by the Nurse Practitioner on Thursday afternoon for a preliminary consultation. Am scheduled for an MRI and, depending on what the MRI reveals, possibly a CT scan, also, on Tuesday morning next week. They do not have an opening for me to see the specialist for 2 weeks, but they are going to try to find a spot to squeeze me in next week. I was told they are going to have me see their best doc for this type of injury.
In the meantime, I was sent to an orthotic appliance business (who are people we know from church) to be fitted for a back brace. Any of you ladies remember corsets? Well, my brace is quite similar, only much more complicated to get on and off. It fits over the top of my hips and goes all the way up my back with straps that go over my shoulders. There are all kinds of straps across the front that have to be tightened in a particular order. It does give me a lot of support, for which I am most grateful. However, the fracture in the middle of my back constantly reminds me it is there by giving me a little stab of pain whenever I move a little too much. The muscles all around my ribs and chest are tight and tense from trying to hold me up.
On Monday, we make the drive again to Stanford to begin the next round of treatment. We'll return there again on the following Monday.
The Radiology specialist is concerned about the steroids I'm taking as part of my treatment. Not only do they contribute to bone loss, but they also inhibit the bone from healing. I suspect there is going to be a request for the steroids to be discontinued temporarily. I don't anticipate this being a problem as there have been recent clinical trials where they are experimenting with my particular chemo drug as a stand alone agent without the addition of steroids.
So, prayer warriors, you have your assignment this week!!
In the meantime, I was sent to an orthotic appliance business (who are people we know from church) to be fitted for a back brace. Any of you ladies remember corsets? Well, my brace is quite similar, only much more complicated to get on and off. It fits over the top of my hips and goes all the way up my back with straps that go over my shoulders. There are all kinds of straps across the front that have to be tightened in a particular order. It does give me a lot of support, for which I am most grateful. However, the fracture in the middle of my back constantly reminds me it is there by giving me a little stab of pain whenever I move a little too much. The muscles all around my ribs and chest are tight and tense from trying to hold me up.
On Monday, we make the drive again to Stanford to begin the next round of treatment. We'll return there again on the following Monday.
The Radiology specialist is concerned about the steroids I'm taking as part of my treatment. Not only do they contribute to bone loss, but they also inhibit the bone from healing. I suspect there is going to be a request for the steroids to be discontinued temporarily. I don't anticipate this being a problem as there have been recent clinical trials where they are experimenting with my particular chemo drug as a stand alone agent without the addition of steroids.
So, prayer warriors, you have your assignment this week!!
Saturday, August 6, 2011
Deep in the heart of Texas
We just returned from a trip to Texas to attend the yearly Suppor Group Leaders' Training with the International Myeloma Foundation. It was a really good conference this year and we felt we came away with lots of encouragement and fresh ideas to assist us in leading our support group here. Our group met this morning and our former oncologist was in town to speak to us. It was a really good meeting and we all loved getting a hug from our doctor that we will never be able to replace. He has a genuine concern for each of us as a whole person and not just a cancer patient.
Following the conference we took another flight farther south in the state and spent a few days with my youngest brother, Hal, in Corpus Christi. Two of his daughters came down from Austin while we were there and it was a grand reunion for all of us.
I received two treatments at Stanford prior to our trip to Texas. I am receiving half-dose of Velcade once a week for 2 weeks; then three weeks off. In addition, I take 20 mg. of Dexamethasone every week and an anti-viral medication twice a day. Velcade leaves me very susceptible to shingles and with my particular type of myeloma, I am not able to have the vaccine to prevent it. Within hours of my first dose of Velcade, the neuropathy in my feet increased. It is hoped that this reduced schedule of treatment will keep the neuropathy from increasing too dramatically and reduce the cancer load at the same time.
In June, I had several acupuncture treatments in my feet that seemed to improve the still lingering neuropathy from previous treatment. I plan to continue with the treatments this month and see if they will help.
Injured my back in June and it is still bothering me quite a bit. Acupuncture and chiropratic treatments have helped, but there is some concern that the injury could be cancer related. Had an x-ray Friday morning, but am told by Stanford that I need a CT scan. Medicare says x-ray has to come first. Have had some improvement, but can still tell the area of the injury is very tender and it wouldn't take much for the pain and weakness to return. We are praying my back will continue to improve and there won't be any damage to bones or discs found.
Had my last IVIG infusion yesterday and am prayerfully waiting to see if they will be approved for another year. They are my lifeline! Without them, I wouldn't be able to stay healthy or have any quality of life. Please join us in praying that they will be approved quickly and easily.
Now to the doctor issue. My Stanford doctor wants me to see a Board Certified Hematologist and I am unable to get into any in Redding. We are really short of oncologists here, and I seem to get placed with whoever has room to take me. So we are having to go a little farther afield. I have an appointment with an oncologist in Chico the middle of August. It is a doctor that my Stanford doctor knew about and has sent a referral there for me. In the meantime, I will need to make 2 more trips to Stanford for my August treatments. Hopefully, I can work in a trip a little farther south, too, and visit that little magnet named Miss Lilian!
Prayer needs: IVIG infusion approval, neuropathy will improve, will find oncologist closer to home, my back will heal on its own.
Following the conference we took another flight farther south in the state and spent a few days with my youngest brother, Hal, in Corpus Christi. Two of his daughters came down from Austin while we were there and it was a grand reunion for all of us.
I received two treatments at Stanford prior to our trip to Texas. I am receiving half-dose of Velcade once a week for 2 weeks; then three weeks off. In addition, I take 20 mg. of Dexamethasone every week and an anti-viral medication twice a day. Velcade leaves me very susceptible to shingles and with my particular type of myeloma, I am not able to have the vaccine to prevent it. Within hours of my first dose of Velcade, the neuropathy in my feet increased. It is hoped that this reduced schedule of treatment will keep the neuropathy from increasing too dramatically and reduce the cancer load at the same time.
In June, I had several acupuncture treatments in my feet that seemed to improve the still lingering neuropathy from previous treatment. I plan to continue with the treatments this month and see if they will help.
Injured my back in June and it is still bothering me quite a bit. Acupuncture and chiropratic treatments have helped, but there is some concern that the injury could be cancer related. Had an x-ray Friday morning, but am told by Stanford that I need a CT scan. Medicare says x-ray has to come first. Have had some improvement, but can still tell the area of the injury is very tender and it wouldn't take much for the pain and weakness to return. We are praying my back will continue to improve and there won't be any damage to bones or discs found.
Had my last IVIG infusion yesterday and am prayerfully waiting to see if they will be approved for another year. They are my lifeline! Without them, I wouldn't be able to stay healthy or have any quality of life. Please join us in praying that they will be approved quickly and easily.
Now to the doctor issue. My Stanford doctor wants me to see a Board Certified Hematologist and I am unable to get into any in Redding. We are really short of oncologists here, and I seem to get placed with whoever has room to take me. So we are having to go a little farther afield. I have an appointment with an oncologist in Chico the middle of August. It is a doctor that my Stanford doctor knew about and has sent a referral there for me. In the meantime, I will need to make 2 more trips to Stanford for my August treatments. Hopefully, I can work in a trip a little farther south, too, and visit that little magnet named Miss Lilian!
Prayer needs: IVIG infusion approval, neuropathy will improve, will find oncologist closer to home, my back will heal on its own.
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