A quick update to let everyone know that I will begin treatment with the new antibody drug on January 5 at UCSF! The drug's generic name is Daratumumab and it's brand name is Darzalex.
Please send your thoughts and prayers my way that day for an uneventful beginning of this new type of treatment and that treatment will be successful. It will be a long day - check in to the infusion center at 7:15 am and won't be released until 8:00 pm that night. Pray for my dear husband, Steve, too, who will have a long day of "hanging out" at the infusion center.
Our Christmas is a happy memory now. The grand kids didn't get sick until after Christmas this year and just with sore throats and colds. No rare diseases like last year! (Hand, Foot and Mouth Disease) Everyone was home again this year - an unexpected blessing. Opening packages was rather chaotic with ages 8, 5 1/2, 4, 3, 2, & 1. 8-month old Whit slept soundly on his mom's lap through all the noise and excitement.
Thanks for the continued prayer support. It really does make a difference!
Thursday, December 31, 2015
Monday, November 23, 2015
New Drug Approved!
We received good news this week! The FDA has approved the new drug we've been waiting for. It is called an "early access" approval; which means it is only available to those who have failed all other therapies. It is the first Antibody type drug that is available for Myeloma. UCSF, and my Dr in particular, has been one of the clinical trial locations and he has kept us informed of it's success and hope for early access approval by the end of the year. It will be at least mid-December before there is enough supply manufactured for the drug to be available in quantities for treatment. I will most likely begin in January. The first few infusions will be at UCSF so they can monitor possible infusion reactions and initial side effects.
This new drug is designed to activate the T-killer cells to fight the cancer. A small dose of steroids is usually given with the infusion but the weekly large doses will not be required. Hooray!! I heard someone this week refer to it as "Tyrannosaurus Dex"; referring to the large doses of dexamethasone required with current treatment.
There was also another drug that received FDA approval this week. That's two new myeloma drugs within 5 days! Good news for myeloma patients. This drug is an oral/pill form of an existing drug that is now given through infusion.
There are many challenges for me between now and January. One is the iron overload issue. Mine has gotten quite high with all the transfusions and must be addressed. The body does not excrete the iron; it builds up and eventually damages the internal organs. There is a new form of the chelation drug that is needed - a pill that can be taken at home. This new pill does not lower the platelets as significantly as other forms. This is an important issue for me as mine are quite low due to treatment and I need to stay on the current treatment regimen until I can switch to the new drug in January. My Medicare drug plan does not currently cover this new form of the drug, and the pharmacist is trying to convince them that they should make an exception and cover this for me. Am hoping I will soon have it in my hands and can begin. Even in the pill form there are lots of possible side effects. I had to have a vision and hearing screening done as it can affect sight and hearing. My doctor said diarrhea is guaranteed and my blood will be monitored weekly for toxicity in the liver and/or kidneys. So, the excess iron can damage the organs and the "cure" can damage the organs!
Speaking of my kidneys - after repeated UTI's (bladder infections), I have been diagnosed with kidney stones. A four week wait for first opening with urologist. December 1 can't get here soon enough. Keep hoping they will call with an opening due to a cancellation. Won't know what's ahead for resolving this issue and how it's going to affect everything else I've got going on until I see the urologist for 1st consultation appointment.
Even though I continually face many health issues and side effects of treatment, I'm still living and breathing and functioning on a limited basis. We know the prayers of our friends and family sustain us and we see answers in many small ways. We have been amazed that every time a treatment quits working and we prepare for the end, a new drug will become available to carry me through a while longer. Each successive treatment typically is a shorter duration of sustainable effectiveness but we just keep taking things one day at a time.
Jen is basically all moved and getting settled into their new home. Jeff comes on his days off and will be here permanently and ready to start his new assignment at the end of the month. Jeff will be working on Thanksgiving and Jen will enjoy the day with his family here locally.
Thanksgiving will be a quiet day for us as it is typically one of the days of the week that I am dealing with side effects. We will be enjoying a Thanksgiving dinner on Friday with Jeremy and Holly and her family. Saturday we hope to all go and cut Christmas trees. Looks like there will be lots of fresh snow in the mountains. I will be the one in the truck drinking hot chocolate!
At this season of Thanksgiving, we are especially thankful for our friends and family who keep us in their hearts and prayers throughout the year.
This new drug is designed to activate the T-killer cells to fight the cancer. A small dose of steroids is usually given with the infusion but the weekly large doses will not be required. Hooray!! I heard someone this week refer to it as "Tyrannosaurus Dex"; referring to the large doses of dexamethasone required with current treatment.
There was also another drug that received FDA approval this week. That's two new myeloma drugs within 5 days! Good news for myeloma patients. This drug is an oral/pill form of an existing drug that is now given through infusion.
There are many challenges for me between now and January. One is the iron overload issue. Mine has gotten quite high with all the transfusions and must be addressed. The body does not excrete the iron; it builds up and eventually damages the internal organs. There is a new form of the chelation drug that is needed - a pill that can be taken at home. This new pill does not lower the platelets as significantly as other forms. This is an important issue for me as mine are quite low due to treatment and I need to stay on the current treatment regimen until I can switch to the new drug in January. My Medicare drug plan does not currently cover this new form of the drug, and the pharmacist is trying to convince them that they should make an exception and cover this for me. Am hoping I will soon have it in my hands and can begin. Even in the pill form there are lots of possible side effects. I had to have a vision and hearing screening done as it can affect sight and hearing. My doctor said diarrhea is guaranteed and my blood will be monitored weekly for toxicity in the liver and/or kidneys. So, the excess iron can damage the organs and the "cure" can damage the organs!
Speaking of my kidneys - after repeated UTI's (bladder infections), I have been diagnosed with kidney stones. A four week wait for first opening with urologist. December 1 can't get here soon enough. Keep hoping they will call with an opening due to a cancellation. Won't know what's ahead for resolving this issue and how it's going to affect everything else I've got going on until I see the urologist for 1st consultation appointment.
Even though I continually face many health issues and side effects of treatment, I'm still living and breathing and functioning on a limited basis. We know the prayers of our friends and family sustain us and we see answers in many small ways. We have been amazed that every time a treatment quits working and we prepare for the end, a new drug will become available to carry me through a while longer. Each successive treatment typically is a shorter duration of sustainable effectiveness but we just keep taking things one day at a time.
Jen is basically all moved and getting settled into their new home. Jeff comes on his days off and will be here permanently and ready to start his new assignment at the end of the month. Jeff will be working on Thanksgiving and Jen will enjoy the day with his family here locally.
Thanksgiving will be a quiet day for us as it is typically one of the days of the week that I am dealing with side effects. We will be enjoying a Thanksgiving dinner on Friday with Jeremy and Holly and her family. Saturday we hope to all go and cut Christmas trees. Looks like there will be lots of fresh snow in the mountains. I will be the one in the truck drinking hot chocolate!
At this season of Thanksgiving, we are especially thankful for our friends and family who keep us in their hearts and prayers throughout the year.
Monday, October 5, 2015
Challenging Days Ahead
A quick update today after seeing my local dr. The latest test for the free light chains (which tell us how much cancer is in the bone marrow) has been done and entered on the chart I had prepared for my UCSF dr and had one for my local dr also at my appointment. The pattern is now showing that the cancer is increasing. He had received a follow-up note from my USCF dr with some additional information he hadn't shared with me. If the numbers continue to go up and things get too critical before the new drug is available, intensive salvage chemo would be needed. Don't know if it would be outpatient or inpatient in the hospital; done locally or at UCSF. The drugs used would be more general type chemo and with all of the side effects generally associated: loss of hair, gastrointestinal upset, mouth sores, etc. Not looking forward to that possibility but am thankful there is still an option, even if it will be more difficult. There is one particular drug that in the past was very effective and used frequently. With all the new targeted therapies, it is now only used to prepare the bone marrow for stem-cell transplant. I'm sure this is one of the drugs that would be used.
Received 2 more units of red blood last week and am feeling fairly good this week even though I'm entering the third week of treatment. Maybe this will carry me through it a little stronger. My local dr told me they will have to check my ferritin (iron) level in the near future due to the number of transfusions I've had since April. Iron overload in the blood can happen when there are a lot of transfusions in a short amount of time. I've had total of 11 and when approaching 20 within a year it needs to be checked. An oral medication can remedy the problem but it will cause diarrhea as the body rids itself of the excess. Hopefully, it is a short-lived process.
The next few months are a busy time with the holidays approaching and everyone home for Christmas, Jen's move, 8 birthdays to be celebrated and the possibility that I will be dealing with a much more difficult chemo routine. Your prayers are needed and greatly appreciated!
On a happier note, Steve & I celebrated 40 years of marriage at the end of September! So happy to be here and able to celebrate it. Of course, none of the special trips on our bucket list for celebrating this milestone were taken, no special dinner out as I was too exhausted. However, I'd say the blood moon was a pretty special happening which we enjoyed it from our bedroom window.
Received 2 more units of red blood last week and am feeling fairly good this week even though I'm entering the third week of treatment. Maybe this will carry me through it a little stronger. My local dr told me they will have to check my ferritin (iron) level in the near future due to the number of transfusions I've had since April. Iron overload in the blood can happen when there are a lot of transfusions in a short amount of time. I've had total of 11 and when approaching 20 within a year it needs to be checked. An oral medication can remedy the problem but it will cause diarrhea as the body rids itself of the excess. Hopefully, it is a short-lived process.
The next few months are a busy time with the holidays approaching and everyone home for Christmas, Jen's move, 8 birthdays to be celebrated and the possibility that I will be dealing with a much more difficult chemo routine. Your prayers are needed and greatly appreciated!
On a happier note, Steve & I celebrated 40 years of marriage at the end of September! So happy to be here and able to celebrate it. Of course, none of the special trips on our bucket list for celebrating this milestone were taken, no special dinner out as I was too exhausted. However, I'd say the blood moon was a pretty special happening which we enjoyed it from our bedroom window.
Tuesday, September 22, 2015
Life Giving Blood
Saw my doc at UCSF last week. My free light chain numbers have been going up and down rather dramatically depending on what day in the treatment cycle my blood is tested. I prepared a chart for him showing all the numbers, dates and day in cycle so we could look at the pattern. His explanation is too technical for me to explain and I am still trying to wrap my head around it. He indicated that the info the chart provided was helpful in his research. The bottom line to all this technical stuff and charting lab results, is that you can see a somewhat stable pattern within the parameters of the numbers. Stability is important because it appears at this time that January is the earliest to hope the next drug will be approved by FDA for early access. That is the category I fall into.
In the meantime, I am managing with very low blood counts (red, white and platelets). My week off from treatment is spent with at last 1-2 more trips to Chico for blood tests and usually a transfusion of 1-2 units red blood. Another full day is spent at the hospital in Redding getting my monthly infusion of gamma-globulin. This has been an extremely important part of my care that has kept me from serious illness so far. Speaking of illness, it's that time of year when I will have to start being more careful about exposure to people who might have flu or other illnesses we typically see in the fall and winter. The winter months are what I call my "hibernation" months. We stay pretty close to home then and by spring I've got cabin fever and am ready to get out more.
Before the holidays are upon us, we are in the process of helping our daughter, Jen, make their move back to Redding, where Jeff has been transferred. Baby #3 (a boy!!) is due the end of January and am so glad she will be close to both families who can provide lots of lovin' and help.
So, how am I feeling? I feel pretty good during my week off chemo after my transfusion and into the first week of treatment. By day 8 of the cycle, I'm starting to feel the fatigue and weakness which becomes very pronounced during the third week. Also during the third week, I become very short of breath due to the lack of adequate hemoglobin in the red blood. The brain requires the most oxygen to function and with the lack of it available to move around my body, thinking and processing information can become challenging. I move slow and have to lay down after I eat as my body needs the oxygen to digest my food. I realized this early on as the only time I fainted from low hemoglobin was when I was trying to continue doing too much after a meal, such as climbing the stairs in our house. It continues to be difficult for people to understand and believe that my health is as precarious as it really is cause I look the picture of health on the outside. It's just another reminder that we can't judge people by their appearance.
I am grateful for the many people who donate blood, some on a regular basis. I am also grateful that my blood type affords me the designation as a "universal" recipient meaning I can receive all blood types so blood has always been easily available for me. I always say a quick prayer of gratitude for the unknown person/persons who have so generously donated their life blood that I might continue to have life. It reminds me, too, of the gift Christ gave to all of us through his shed blood that we might have eternal life. There are others, too, who go through a much more rigorous screening to donate the gamma-globulin I need. The kindness and generosity of strangers for whom I also thank the Lord when I receive those infusions.
Please pray that my cancer will respond to the current treatment. Improvement would be appreciated; stability required. May the Lord bless you as you intercede for me.
In the meantime, I am managing with very low blood counts (red, white and platelets). My week off from treatment is spent with at last 1-2 more trips to Chico for blood tests and usually a transfusion of 1-2 units red blood. Another full day is spent at the hospital in Redding getting my monthly infusion of gamma-globulin. This has been an extremely important part of my care that has kept me from serious illness so far. Speaking of illness, it's that time of year when I will have to start being more careful about exposure to people who might have flu or other illnesses we typically see in the fall and winter. The winter months are what I call my "hibernation" months. We stay pretty close to home then and by spring I've got cabin fever and am ready to get out more.
Before the holidays are upon us, we are in the process of helping our daughter, Jen, make their move back to Redding, where Jeff has been transferred. Baby #3 (a boy!!) is due the end of January and am so glad she will be close to both families who can provide lots of lovin' and help.
So, how am I feeling? I feel pretty good during my week off chemo after my transfusion and into the first week of treatment. By day 8 of the cycle, I'm starting to feel the fatigue and weakness which becomes very pronounced during the third week. Also during the third week, I become very short of breath due to the lack of adequate hemoglobin in the red blood. The brain requires the most oxygen to function and with the lack of it available to move around my body, thinking and processing information can become challenging. I move slow and have to lay down after I eat as my body needs the oxygen to digest my food. I realized this early on as the only time I fainted from low hemoglobin was when I was trying to continue doing too much after a meal, such as climbing the stairs in our house. It continues to be difficult for people to understand and believe that my health is as precarious as it really is cause I look the picture of health on the outside. It's just another reminder that we can't judge people by their appearance.
I am grateful for the many people who donate blood, some on a regular basis. I am also grateful that my blood type affords me the designation as a "universal" recipient meaning I can receive all blood types so blood has always been easily available for me. I always say a quick prayer of gratitude for the unknown person/persons who have so generously donated their life blood that I might continue to have life. It reminds me, too, of the gift Christ gave to all of us through his shed blood that we might have eternal life. There are others, too, who go through a much more rigorous screening to donate the gamma-globulin I need. The kindness and generosity of strangers for whom I also thank the Lord when I receive those infusions.
Please pray that my cancer will respond to the current treatment. Improvement would be appreciated; stability required. May the Lord bless you as you intercede for me.
Thursday, July 23, 2015
Two Miracles
My life with Myeloma continues to be a day to day challenge but 2 recent miracles have lifted our spirits.
We were discouraged at the end of June when we learned my free light chains had increased. This was an indication that the treatment had stopped working so we were all set to make arrangements for the clinical trial starting this month (July). It would have required quite a bit of time in San Francisco initially, then 2 days a week and after the first month 2 days every other week. Earlier this month, I started having a lot of side effects, feeling very weak & shaky, arthritic pain and barely able to function or be up for very long. We assumed the cancer had reached a point that it was taking over. My symptoms peaked last week and I really thought I was near the end. A few days afterward, as I was starting to feel slightly better, we received the most recent free light chain test. We were shocked to see my cancer load had dropped over 100 points in one month! What I was experiencing was called "tumor lysis syndrome". It is from the body being overwhelmed with the cancer dieing off. It can be a medical emergency but I made it through without medical intervention. My adherence to drinking lots of water everyday has helped me through treatment and now through this die off. Our first miracle was the dramatic drop in my cancer load. The second, making it through tumor lysis without any organ damage, in particular, the kidneys.
We saw my doc at UCSF this week. He was pleasantly surprised at the dramatic drop in my free light chains. They are too low now to qualify for the trial so we will continue with the same treatment, and hope and pray that it will continue to work satisfactorily. There is concern that my blood counts continue to remain low in spite of the cancer diminishing. He said it could be my bone marrow is beginning to fail due to all the treatment I have had over the past 8 years. His focus, he said, is on the amount of cancer and reducing that. The blood counts can be supported with transfusions and/or special shots. My local doc has lowered the minimums for my white blood cell count and platelets, but they are even lower at UCSF. So my UCSF doc has told me if my counts are too low for treatment locally to call his nurse and I will be scheduled for the next day to receive treatment there. The last 2 cycles I've received were both without any delays; the first 2 since starting back on treatment again in March. Staying consistent with treatment is very important right now, he said.
We enjoyed a visit from our friends, Chris and Bill, at the end of June. Chris and I were college roommates. Was so grateful to feel pretty good most of the week they were here. Our other roommate, Pat, lives locally. We visited on my chemo days as we made the drive and sat through my treatment. I'm very grateful for Pat, who is also my life-long friend, who drives me frequently to chemo.
I have had the opportunity to share with many involved in my medical care that my faithful prayer warriors have contributed to my little miracles along the way. Those prayers are truly felt and appreciated. It's been 8 years now that I have fought and lived this battle day to day. Do not grow weary in your continued thoughts and prayers for us.
We were discouraged at the end of June when we learned my free light chains had increased. This was an indication that the treatment had stopped working so we were all set to make arrangements for the clinical trial starting this month (July). It would have required quite a bit of time in San Francisco initially, then 2 days a week and after the first month 2 days every other week. Earlier this month, I started having a lot of side effects, feeling very weak & shaky, arthritic pain and barely able to function or be up for very long. We assumed the cancer had reached a point that it was taking over. My symptoms peaked last week and I really thought I was near the end. A few days afterward, as I was starting to feel slightly better, we received the most recent free light chain test. We were shocked to see my cancer load had dropped over 100 points in one month! What I was experiencing was called "tumor lysis syndrome". It is from the body being overwhelmed with the cancer dieing off. It can be a medical emergency but I made it through without medical intervention. My adherence to drinking lots of water everyday has helped me through treatment and now through this die off. Our first miracle was the dramatic drop in my cancer load. The second, making it through tumor lysis without any organ damage, in particular, the kidneys.
We saw my doc at UCSF this week. He was pleasantly surprised at the dramatic drop in my free light chains. They are too low now to qualify for the trial so we will continue with the same treatment, and hope and pray that it will continue to work satisfactorily. There is concern that my blood counts continue to remain low in spite of the cancer diminishing. He said it could be my bone marrow is beginning to fail due to all the treatment I have had over the past 8 years. His focus, he said, is on the amount of cancer and reducing that. The blood counts can be supported with transfusions and/or special shots. My local doc has lowered the minimums for my white blood cell count and platelets, but they are even lower at UCSF. So my UCSF doc has told me if my counts are too low for treatment locally to call his nurse and I will be scheduled for the next day to receive treatment there. The last 2 cycles I've received were both without any delays; the first 2 since starting back on treatment again in March. Staying consistent with treatment is very important right now, he said.
We enjoyed a visit from our friends, Chris and Bill, at the end of June. Chris and I were college roommates. Was so grateful to feel pretty good most of the week they were here. Our other roommate, Pat, lives locally. We visited on my chemo days as we made the drive and sat through my treatment. I'm very grateful for Pat, who is also my life-long friend, who drives me frequently to chemo.
I have had the opportunity to share with many involved in my medical care that my faithful prayer warriors have contributed to my little miracles along the way. Those prayers are truly felt and appreciated. It's been 8 years now that I have fought and lived this battle day to day. Do not grow weary in your continued thoughts and prayers for us.
Wednesday, June 17, 2015
Living by the Numbers
My treatments have been start and stop. My blood counts have been too low for treatment at times and then they are postponed for 1 or 2 weeks. The minimum requirements at my local cancer center are higher than what is required at UCSF and it has become a concern for my doc there that my treatments are not consistent. The drugs appear to be holding my numbers at the same level but we will know next week if this is continuing. Even though my cancer numbers are very high, if we can keep them stable for the next 6 months, there are 2 new drugs my USCF doc is quite sure will have FDA approval and be available to me. If we can't keep the numbers stable, there are 3 clinical trials that I would qualify for now that my serum free light chains are so high and they can monitor progress using that test. The best option of those 3 is a trial that is due to begin in July.
There is an experimental blood test being done by a lab in San Francisco that is developing a test to follow the Myeloma DNA in the peripheral blood. I had that test done in March and my doc said they were successful in measuring my myeloma.
Currently, my blood counts are extremely low. This is my week off treatment and it's going to take a miracle for them to be adequate to begin treatment again next week. I am keeping my white blood count adequate with the use of nuepogen shots and my red blood count with transfusions - 1 to 2 units depending on how low my hemoglobin is and how severe my symptoms. I actually fainted a few days ago but was in the bedroom and felt it coming on and made it to the bed before I fell. Needless to say, after my labs this week, I am scheduled for 2 units of blood tomorrow. My platelets improved for awhile and now they are even lower than they were previously.
After my transfusions at the end of April, we were able to make a quick trip to Florida to meet our new grandson, Whittaker Daniel Rund. He was so big when he was born (9# 8 oz) that he was almost too heavy for my 10 lb weight limit with my back. But I managed to get plenty of cuddle time with my arms supported with pillows. We had such a good time playing with Bergan who was just starting to say some words and is now speaking even more clearly. It was hard to leave!
In between my weekly infusions in May, we made a quick road trip to western Colorado to attend the high school graduation of Steve's nieces triplets. It was a fun few days and great visiting with other family that either lives near there or was in town for the big event.
My annual girls trip to Ashland has been on hold the past several years but with some last minute planning we were able to put it together this year. It turned out to be a "mother-in-law" trip as it was me, Jeremy's mother-in-law and Jesse's mother-in-law. We had such a great time seeing plays, musicals, movies and eating! A unit of blood the day before we left kept me going even though I still live life in slow motion.
Jen and family were here for a long weekend and just left yesterday. I was pretty weak and dealing with side effects most of the time, but I could at least sit and play games and do puzzles with my little granddaughters.
After being so housebound all winter to avoid exposure to flu and other winter illnesses, it sure lifted my spirits to be able to get away and have some fun.
Thank you for your faithfulness in continuing to pray for us during this critical time.
There is an experimental blood test being done by a lab in San Francisco that is developing a test to follow the Myeloma DNA in the peripheral blood. I had that test done in March and my doc said they were successful in measuring my myeloma.
Currently, my blood counts are extremely low. This is my week off treatment and it's going to take a miracle for them to be adequate to begin treatment again next week. I am keeping my white blood count adequate with the use of nuepogen shots and my red blood count with transfusions - 1 to 2 units depending on how low my hemoglobin is and how severe my symptoms. I actually fainted a few days ago but was in the bedroom and felt it coming on and made it to the bed before I fell. Needless to say, after my labs this week, I am scheduled for 2 units of blood tomorrow. My platelets improved for awhile and now they are even lower than they were previously.
After my transfusions at the end of April, we were able to make a quick trip to Florida to meet our new grandson, Whittaker Daniel Rund. He was so big when he was born (9# 8 oz) that he was almost too heavy for my 10 lb weight limit with my back. But I managed to get plenty of cuddle time with my arms supported with pillows. We had such a good time playing with Bergan who was just starting to say some words and is now speaking even more clearly. It was hard to leave!
In between my weekly infusions in May, we made a quick road trip to western Colorado to attend the high school graduation of Steve's nieces triplets. It was a fun few days and great visiting with other family that either lives near there or was in town for the big event.
My annual girls trip to Ashland has been on hold the past several years but with some last minute planning we were able to put it together this year. It turned out to be a "mother-in-law" trip as it was me, Jeremy's mother-in-law and Jesse's mother-in-law. We had such a great time seeing plays, musicals, movies and eating! A unit of blood the day before we left kept me going even though I still live life in slow motion.
Jen and family were here for a long weekend and just left yesterday. I was pretty weak and dealing with side effects most of the time, but I could at least sit and play games and do puzzles with my little granddaughters.
After being so housebound all winter to avoid exposure to flu and other winter illnesses, it sure lifted my spirits to be able to get away and have some fun.
Thank you for your faithfulness in continuing to pray for us during this critical time.
Tuesday, April 21, 2015
Platelets Improved
Thanks for all your prayers! My platelets came up to a level I haven't seen since last fall. Treatment began again last week. We still won't know until sometime in May whether it's working or not, when the next set of specialized blood tests are done to check the free light chains and beta-2 microgloblin. Both of these have been elevated to a level well beyond what they have been in the past. So even a slight reduction in their numbers will be a good sign.
All the prayers definitely also broke down some walls of communication that had become very frustrating and non-productive. Time is of the essence with my treatment right now. I will spare you all the details, but please know that we are very aware that prayer is what made the difference.
Saw my local doc last week. He was a bit frustrated that the nurse practitioner had stopped my treatment without checking with him, especially since I was only 2 points below general guidelines. Treating myeloma is a complex, individualized process and doesn't fit into the standard mold of "chemotherapy". He gave me a number that was his minimum and from now on the infusion nurses are to contact him directly if they have any questions or concerns.
During the break we were able to meet our son and family in Bend for a few days and play with our newest little grand daughter, Wallis Bea. Then on to the ranch land around Arlington to see my oldest brother, Ernie, for a day. My weekly labs were done at the beautiful St. Charles Cancer Center in Bend. By afternoon we had the results and Steve had given me my neupogen shot before we headed home not realizing we were going to drive into an unexpected snow storm. A fast trip, but most enjoyable. Moments like these really lift my spirits even though everyone has to put up with a germophobe!
We're still waiting for little boy Rund to make his appearance. Mid-March, my cousin, Sherry, came to spend a week with me and we put Steve on a plane to Johanna's to spend a week helping her while Titus was gone on assignment. She was feeling very pregnant and Bergan is a bundle of energy. I was disappointed not to be able to go, too, but chemo took precedence. In spite of chemo, we managed to have a great time; especially a couple days in Medford with another cousin, Sandi.
Thanks for the phone calls, emails and cards. Your prayers and love for us are a blessing that we cherish.
All the prayers definitely also broke down some walls of communication that had become very frustrating and non-productive. Time is of the essence with my treatment right now. I will spare you all the details, but please know that we are very aware that prayer is what made the difference.
Saw my local doc last week. He was a bit frustrated that the nurse practitioner had stopped my treatment without checking with him, especially since I was only 2 points below general guidelines. Treating myeloma is a complex, individualized process and doesn't fit into the standard mold of "chemotherapy". He gave me a number that was his minimum and from now on the infusion nurses are to contact him directly if they have any questions or concerns.
During the break we were able to meet our son and family in Bend for a few days and play with our newest little grand daughter, Wallis Bea. Then on to the ranch land around Arlington to see my oldest brother, Ernie, for a day. My weekly labs were done at the beautiful St. Charles Cancer Center in Bend. By afternoon we had the results and Steve had given me my neupogen shot before we headed home not realizing we were going to drive into an unexpected snow storm. A fast trip, but most enjoyable. Moments like these really lift my spirits even though everyone has to put up with a germophobe!
We're still waiting for little boy Rund to make his appearance. Mid-March, my cousin, Sherry, came to spend a week with me and we put Steve on a plane to Johanna's to spend a week helping her while Titus was gone on assignment. She was feeling very pregnant and Bergan is a bundle of energy. I was disappointed not to be able to go, too, but chemo took precedence. In spite of chemo, we managed to have a great time; especially a couple days in Medford with another cousin, Sandi.
Thanks for the phone calls, emails and cards. Your prayers and love for us are a blessing that we cherish.
Thursday, April 9, 2015
Prayers needed!
Prayers appreciated as it looks like we're near the end of this long journey. My blood counts were too low to continue after just 2 weeks of treatment. They are not improving and are getting lower. Don't have an appointment with my local doc until next Thursday and my UCSF doc is gone again for 2 weeks. Will get another blood test Monday morning and if counts are adequate will try to do more treatment beginning Wed. Have been off all chemo for almost a week now and there has not been an improvement in my blood counts. We have prepared ourselves for the possibility that there will be no more treatment and time remaining is unknown.
Thank you again for your continued prayers and interest in our lives!! They have sustained us and encouraged us when things have looked bleak before. We continue to pray for a miracle always knowing that we in His care.
Thank you again for your continued prayers and interest in our lives!! They have sustained us and encouraged us when things have looked bleak before. We continue to pray for a miracle always knowing that we in His care.
Saturday, March 28, 2015
Back at it again!
January was a month of testing. February was spent trying to reach my UCSF doc with his response to the test results. My local doc felt I needed to be back on treatment right away - in February. Finally got everything worked out and started treatment again on March 19. Same drugs as the last time and am praying they will work again. Oral chemo pills 21 days and 7 off; infusion chemo 2 days in a row each week for 3 weeks and 1 week off. The neuropathy has returned and the fatigue is starting to build so am trying to pace myself. All the supportive meds that go along with treatment contribute to the fatigue, and cause dizziness and weight gain. Am starting off with really low platelets and white blood cells. My red blood cells and hemoglobin are a little below normal but actually pretty good for my condition. But it is now the careful "dance" of keeping everything in balance for optimal conditions for treatment.
Before treatment started we were able to squeeze in a few days with Jen and family to celebrate Lily's 5th birthday. Hopefully a trip to Portland during a chemo break to see our sweet little Miss Wallis Bea who is now 4 1/2 months old. Had a wonderful visit from a cousin I hadn't seen in many years. While she was here Steve flew to Florida to be with Johanna since Titus had to be gone for the month of March. Our original plan was to go down there for several weeks to be there to help when baby boy Rund arrives in a couple weeks. But it didn't work out with my chemo schedule. Hopefully, we can make a trip in May during a chemo break.
Ty is playing little league now so there will be games to go see. Can't believe he's 7 1/2 already! I can gauge my survival years by his age since he was born 4 months after my diagnosis and was our first grandchild. How blessed we are in a few short weeks number 7 will be born.
Even though the insurance company let me begin treatment, we have to get pre-authorization for my oral chemo and neupogen shots. My infused chemo is not covered and we have to get them to approve an exception and cover it. Please pray this will go through without any problems and that the drugs will work again this time.
Before treatment started we were able to squeeze in a few days with Jen and family to celebrate Lily's 5th birthday. Hopefully a trip to Portland during a chemo break to see our sweet little Miss Wallis Bea who is now 4 1/2 months old. Had a wonderful visit from a cousin I hadn't seen in many years. While she was here Steve flew to Florida to be with Johanna since Titus had to be gone for the month of March. Our original plan was to go down there for several weeks to be there to help when baby boy Rund arrives in a couple weeks. But it didn't work out with my chemo schedule. Hopefully, we can make a trip in May during a chemo break.
Ty is playing little league now so there will be games to go see. Can't believe he's 7 1/2 already! I can gauge my survival years by his age since he was born 4 months after my diagnosis and was our first grandchild. How blessed we are in a few short weeks number 7 will be born.
Even though the insurance company let me begin treatment, we have to get pre-authorization for my oral chemo and neupogen shots. My infused chemo is not covered and we have to get them to approve an exception and cover it. Please pray this will go through without any problems and that the drugs will work again this time.
Saturday, January 24, 2015
HO HO HO Happy New Year!
Whew! Made it through the holidays and am still healthy. Although, I did have a little cold right after everyone left, but I laid low and rested and got through it without antibiotics. That was quite an accomplishment considering all the grand kids were sick some with runny noses and a couple came down with Hand, Foot & Mouth disease, which is similar to chicken pox. That diagnosis caused a flurry of activity as Jen came home from the clinic, threw things in their car and left for home! Dr told them it was not good to be around her pregnant sister or me with my impaired immune system. However, exposure had already taken place and Jeremy's youngest got it as did all 3 of Jeff's sister's kids. The rest of us escaped, probably because in the recesses of my mind there is this vague recollection that it had visited us when the kids were growing up. Lifetime immunity is granted to those who partake!
Our household was a busy place during the holidays with all the little ones, the excitement of Christmas packages, cousins to play with and their toys everywhere, different sleeping schedules with a newborn in the house and naps for the other little ones. I even enjoyed a few naps myself. To answer your question regarding the newborn - Little Rosteeny made her appearance on November 12 and was named Wallis Bea, lovingly now referred to as Wallabea. She is a cutie and has more than doubled her birth weight of 6 pounds already.
Now to bring you up to date with my health issues. After reviewing the small amount of info that was recorded on the poorly functioning heart monitor, my cardiologist scheduled me for a chemical stress test. I was able to "walk" the last one, but that was before my diagnosis. There was quite a bit of prep for how quickly the actual test went. Radioactive tracer injected, then 3-D pictures of my heart before and after. At my appointment following all the tests, she concluded that my heart was actually in pretty good shape for my age and all that I have been through with treatment. However, there was a strange anomaly on the EKG during my stress test that she was not able to explain. She did not feel it warranted further investigation with an angiogram at this time. My blood pressure med dosage was adjusted and a very low dose beta-blocker was added to help with the racing pulse I was experiencing. It has really helped and I can tell if I forget to take it. Will see her again in March.
My most recent blood tests, done at the end of December, showed a very low white blood count and my platelets had dropped dramatically. Neither one adequately recovered after treatment was stopped but instead of recovering they have continued a decline. My free light chains (a marker for myeloma) have stayed in the normal range, but two other blood tests that can be indicators of cancer activity are elevated above normal levels, one has increased quite a bit. What does that mean for me at this point?
Saw my Dr at UCSF and he felt things looked ok for now. Thought the lower white count and lower platelets might be from the cold/virus I was coming down with when the test was done. They just received a new PET/MRI machine and wanted to see if he could get me scheduled for testing in the new machine. Would take several weeks before he could let me know, otherwise I was to return in July.
Following that appointment I saw my local Dr and he was a little more concerned about some of the test results. He felt we needed to do some testing now to see what is going on. So I am scheduled for a PET/CT, bone marrow biopsy and blood tests next week. I will see him the first week of February for the results. He said he would contact my Dr at UCSF regarding his concerns and the tests he has ordered. So, I guess I don't get to experience the fancy, new machine that would have given even more detail than the PET/CT.
I continue day to day doing what I can, looking healthy, feeling good but knowing on the inside my health is just about as fragile as it can be. It's hard not to plan lots of fun activities and travel when I feel good, but tests quickly remind me of my reality and it's the time of year to stay home and out of crowds where illness is prevalent this time of year. My confinement gives more time for reflection and prayer. Trips to the grocery store and medical appointments are like getting a "get out of jail free card" in the game of life. We do, however, have a couple things planned, as always, depending on my tests and labs.
We are especially grateful for those who continue to follow my blog and hold us up in prayer! We are grateful the years the Lord has given us since my diagnosis. It's been a miracle that 4 drugs have become available just when I needed a change in treatment which have prolonged my life but have also taken a toll on my body. My daily reminder is that He is our strength and our source.
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