My recent bone marrow biopsy was inconclusive. As I have probably explained in previous posts, the myeloma (plasma cells) grows in sheets in the bone marrow. Depending on where that tiny needle enters the bone marrow, it can pick up a large concentration of plasma cells or a more normal amount. The radiologist included a photo copy of the slide showing half of it at 100% and the other half a normal 5%. My doc at UCSF said the slide was a perfect example of the difficulty of accurately monitoring my cancer. We both agreed that my poor body needed a rest. I was going to request the month of December off of treatment so I could enjoy Christmas with our family when they are home, but am thankful for a longer break. So it was decided that I would not have anymore treatment until I see him again the first of January. The good news is that I don't have to have another biopsy before then! In the meantime, blood tests are being done every 5 weeks for monitoring. The first one was done the middle of September and already showed quite an increase in the cancer load. It also showed how run down my body was because my white blood count had not yet sufficiently recovered to start another cycle of treatment even though I had been off treatment for 3 weeks. To continue would have required neupogen shots to increase the white count and most likely a transfusion. However, the free light chains (which help assess the cancer load) had already increased significantly. The most recent tests were more encouraging as they showed a slight improvement in everything.
This longer break has given me time and energy to attend to other health care needs. My eye doc said I was beginning to form little tiny tear drop cataracts which indicates my blood sugar has been going up and down more than normal. New glasses are needed as the vision in my left eye has gotten worse. My new dentist had to replace 2 old fillings and do a crown on another tooth.
My primary care doc ran an additional test this time to follow-up on the blood sugar issue. An A1c blood test indicates the average of your glucose over 3 months. It showed my blood sugar had been way below normal! She had never seen a result that low! A glucometer is handy now for use when symptoms of low blood sugar appear. I am wondering now if some of the weakness and other symptoms I attributed to chemo side effects were actually low blood sugar.
All of my tests with the cardiologist were okay for my age and condition. The occasional difficulties with my heart rate have subsided now that I'm not on treatment. The doc suggested wearing a heart monitor for 30 days to try and track any issues. However, the electronic equipment that was supplied kept failing. It wouldn't keep functioning adequately to record much of anything. They even sent replacements and they only worked for a few days. The doctor is now looking for a different company to provide this service.
It has been really nice to have more time at home and not spend so much time going for treatment. My doc at UCSF said to be sure I continue with acupuncture treatments as those have really helped with my neuropathy. As I get farther away from the last treatment, my energy and brain function is beginning to increase. Overdue correspondence is getting some attention; drawers, closets, etc, are getting cleaned and maybe some special projects completed for Christmas. Doesn't sound very "restful" does it!? But I do take time to rest in the afternoon and I do sleep better at night knowing what I've accomplished that day!
There are lots of anniversaries and birthdays in our family over the next few months that I will be able to really enjoy this year. Three anniversaries (including ours), 6 birthdays with the little Rosteeny making it 7 when he/she makes an appearance in a few weeks.
As much as I am enjoying this time off treatment, the thought is always in the back of my mind wondering if the cancer will get away from us and/or not respond to the drugs when I start up again. My faith and trust have to be in the Lord who knows the number of our days.
Wednesday, October 29, 2014
Thursday, September 4, 2014
Late Summer Update
The days continue to pass with continuing treatment that leaves me with just a few days a week I feel strong enough to accomplish much, and that is usually some cleaning, laundry, shopping, preparing some food for the days I don't feel strong enough or well enough. We've hired a lady who comes a couple times a month to do the heavy cleaning. We've also continued to have house guests and am thankful their schedule has fit my good days so company/family can be enjoyed. We stay pretty isolated many days of the week due to my low blood counts. Have only had to have one transfusion so far this summer. However, I managed to catch an intestinal virus that layed me up for 4 days. That was followed by a staph infection, then urinary tract infection. Lots of antibiotics and pro-biotics, and careful diet for several weeks!
Can't decide if the C-PAP machine is really helping much. Even with it at the highest setting for humidity, it still dries out my nose, mouth and throat. My chemo drugs and some of my other medications also are very drying. I ended up with an open sore in my nose that wouldn't heal and that's where the staph infection got started. Fortunately, my oncologist had told me not to use the machine until the sore healed. This was before the staph infection took off. So thankful I didn't breathe that bacteria into my lungs! Oncologist also said not to use the machine until I was completely done with all the antibiotics. Not sure how much it is helping and am a little concerned about using it now.
I will have a few weeks off treatment now as I go through the process of one week off treatment prior to bone marrow biopsy. The results will take a week then will see my Dr. at UCSF to determine next 3-4 cycles of treatment. I can already tell from the free-light chain blood test that the cancer load is going back up since he lowered the weekly dosage of Kyprolis (IV chemo). I anticipate that we will go back to the 2-day a week infusion. Sorta wish it had stayed that way as slow progress was being made and now that will have to be regained, if possible.
During this break I will have my eyes checked, see the dentist, get a pedicure, my hair trimmed. The important things! Also, it's time for my check-up with my cardiologist. That will take 4 appointments:
evaluation, testing that has to be done on different days, then follow-up for results. She has determined that my blood pressure med dosage needs to be increased. Between the steroids making it go up and the chemo making it go down, it is difficult to determine the correct dosage. However, it seems to be increasing. I do have to monitor it, though, as it always drops really low after my Kyprolis infusion.
A year ago in May we met a couple from Sacramento at an International Myeloma Foundation Patient/Family Seminar. We corresponded over the summer last year and were able to help him get a support group started in his area. We went down to help with their first meeting and the group was immediately a big success and they had to find a larger place to meet to accommodate the crowd. He was doing a great job and a couple people from the group did come forward to be of help. This summer he was invited and encouraged to attend the support group leaders conference in Dallas, TX, that IMF sponsors every year. It was immensely helpful to us when we were getting our group going here locally and we attended twice. On the way back they evidently sat by someone on the plane who had the flu. They both became very ill shortly after returning. They were being tested for H1N1 flu, but I never heard what the results were. She was finally able to recover, but he went down hill fast and passed away. These are the challenges we Myeloma patients face! The cancer greatly impairs our immune systems and the chemo drugs we take to maintain control of the cancer further lowers our blood counts and immunity. Steve is much more understanding now of why I wipe down my entire area on a plane with a sani-wipe before I even sit down and I wear a special mask that blocks viruses! I also make him sit between me and the next person so I am not sitting right next to someone who could possibly be ill or expose me to something.
Now to the effort of having fun! My two college roommates and I celebrated our 65th birthdays (which occurred last winter for the 3 of us) with 4 days in a cottage on the California coast at Trinidad. It was my 3rd week of my 3rd cycle of treatment for the summer so I was pretty weak and fragile. But we were able to cook most of our own meals and wander (slowly for me) around Eureka, the beach and a few other places, and we completed a 500 piece jigsaw puzzle. It was great fun to be together and enjoy each others company. But at our ages only a small portion was reminiscing (what we could remember!) and a lot more about health issues!
Off to Portland the following week to see Jesse & Lyn and the coming Rosteeny due Nov. 3!! An event they determined they did not want to share on social media. Of course, our visits always include the hospitality of my sister-in-law, Louann. She arranged a wonderful evening meal which also included my nephew and niece and her family. She always knows the best places to shop so we can make some needed purchases while we are there.
The fun was followed immediately by bone marrow biopsy and next day IVIG (gamma globulin infusion). Had a different doctor this time for biopsy. He believed in sedation!! Got it just right; it was the best combination I've had. He also didn't pound me with the stainless steel hammer to get through the bone. Not sure what he used but was so much easier on me. Maybe the bone is getting thin at the place they seem to continually use. He's the first doctor that let them use my port access for the IV, too! All the others wanted vein access on hand or arm. Well, I only have one good vein left on the side of my wrist just up from my right thumb. It really hurts to get access to it so they give me a shot of lidocaine which hurts just as bad. Go figure! Then it's bruised & really tender for about 2 weeks after.
The latest issue I'm dealing with, as I mentioned above, is my blood pressure. It has been getting higher over the last few weeks. Thought it would level off during my break but has just continued to gradually increase. Dr has adjusted my dosage but it hasn't helped much yet. Just started a new bottle of pills and am wondering if they are okay. This prescription comes mail order and I do have another bottle that I'm going to switch to and see if it is any different. So prayers are welcomed as we sort out this new development.
We are so grateful for your continued interest in our lives and my cancer journey. Your thoughts and prayers sustain us as health issues continue to mount with the progression of treatment resistant cancer looming on the horizon and other health issues developing as a result of all the treatment.
Can't decide if the C-PAP machine is really helping much. Even with it at the highest setting for humidity, it still dries out my nose, mouth and throat. My chemo drugs and some of my other medications also are very drying. I ended up with an open sore in my nose that wouldn't heal and that's where the staph infection got started. Fortunately, my oncologist had told me not to use the machine until the sore healed. This was before the staph infection took off. So thankful I didn't breathe that bacteria into my lungs! Oncologist also said not to use the machine until I was completely done with all the antibiotics. Not sure how much it is helping and am a little concerned about using it now.
I will have a few weeks off treatment now as I go through the process of one week off treatment prior to bone marrow biopsy. The results will take a week then will see my Dr. at UCSF to determine next 3-4 cycles of treatment. I can already tell from the free-light chain blood test that the cancer load is going back up since he lowered the weekly dosage of Kyprolis (IV chemo). I anticipate that we will go back to the 2-day a week infusion. Sorta wish it had stayed that way as slow progress was being made and now that will have to be regained, if possible.
During this break I will have my eyes checked, see the dentist, get a pedicure, my hair trimmed. The important things! Also, it's time for my check-up with my cardiologist. That will take 4 appointments:
evaluation, testing that has to be done on different days, then follow-up for results. She has determined that my blood pressure med dosage needs to be increased. Between the steroids making it go up and the chemo making it go down, it is difficult to determine the correct dosage. However, it seems to be increasing. I do have to monitor it, though, as it always drops really low after my Kyprolis infusion.
A year ago in May we met a couple from Sacramento at an International Myeloma Foundation Patient/Family Seminar. We corresponded over the summer last year and were able to help him get a support group started in his area. We went down to help with their first meeting and the group was immediately a big success and they had to find a larger place to meet to accommodate the crowd. He was doing a great job and a couple people from the group did come forward to be of help. This summer he was invited and encouraged to attend the support group leaders conference in Dallas, TX, that IMF sponsors every year. It was immensely helpful to us when we were getting our group going here locally and we attended twice. On the way back they evidently sat by someone on the plane who had the flu. They both became very ill shortly after returning. They were being tested for H1N1 flu, but I never heard what the results were. She was finally able to recover, but he went down hill fast and passed away. These are the challenges we Myeloma patients face! The cancer greatly impairs our immune systems and the chemo drugs we take to maintain control of the cancer further lowers our blood counts and immunity. Steve is much more understanding now of why I wipe down my entire area on a plane with a sani-wipe before I even sit down and I wear a special mask that blocks viruses! I also make him sit between me and the next person so I am not sitting right next to someone who could possibly be ill or expose me to something.
Now to the effort of having fun! My two college roommates and I celebrated our 65th birthdays (which occurred last winter for the 3 of us) with 4 days in a cottage on the California coast at Trinidad. It was my 3rd week of my 3rd cycle of treatment for the summer so I was pretty weak and fragile. But we were able to cook most of our own meals and wander (slowly for me) around Eureka, the beach and a few other places, and we completed a 500 piece jigsaw puzzle. It was great fun to be together and enjoy each others company. But at our ages only a small portion was reminiscing (what we could remember!) and a lot more about health issues!
Off to Portland the following week to see Jesse & Lyn and the coming Rosteeny due Nov. 3!! An event they determined they did not want to share on social media. Of course, our visits always include the hospitality of my sister-in-law, Louann. She arranged a wonderful evening meal which also included my nephew and niece and her family. She always knows the best places to shop so we can make some needed purchases while we are there.
The fun was followed immediately by bone marrow biopsy and next day IVIG (gamma globulin infusion). Had a different doctor this time for biopsy. He believed in sedation!! Got it just right; it was the best combination I've had. He also didn't pound me with the stainless steel hammer to get through the bone. Not sure what he used but was so much easier on me. Maybe the bone is getting thin at the place they seem to continually use. He's the first doctor that let them use my port access for the IV, too! All the others wanted vein access on hand or arm. Well, I only have one good vein left on the side of my wrist just up from my right thumb. It really hurts to get access to it so they give me a shot of lidocaine which hurts just as bad. Go figure! Then it's bruised & really tender for about 2 weeks after.
The latest issue I'm dealing with, as I mentioned above, is my blood pressure. It has been getting higher over the last few weeks. Thought it would level off during my break but has just continued to gradually increase. Dr has adjusted my dosage but it hasn't helped much yet. Just started a new bottle of pills and am wondering if they are okay. This prescription comes mail order and I do have another bottle that I'm going to switch to and see if it is any different. So prayers are welcomed as we sort out this new development.
We are so grateful for your continued interest in our lives and my cancer journey. Your thoughts and prayers sustain us as health issues continue to mount with the progression of treatment resistant cancer looming on the horizon and other health issues developing as a result of all the treatment.
Thursday, June 12, 2014
Chemo Holiday!
After working with my docs for weeks regarding my treatment schedules, we were able to take off for 2 weeks and travel. Always challenging, though! We left the day after my last infusion for that cycle (5/7) but the chemo pills still had to be finished over the next week. IVIG infusion had to be squeezed into that last week before our departure. The extra dose of steroids required for that created more weight gain and bloating. How do you pack when you know you'll need a different size of clothes for each week you're gone?! Mask and sani-wipes for the plane, Neupogen shots on ice to carry on (in case the nuetrophil count of white blood cells gets too low), and now a C-PAP mask to carry on and get through security, too. Lab orders for weekly blood tests so facilities have to be found for the appropriate day who can provide results the same day. But, we got to go! And go we did!
First stop, Austin, Texas, for my niece's wedding! It was a great 5 days of celebration and visiting with my 4 nieces, the daughters of my youngest brother, Hal. In addition to meeting my brother's new son-in-law, we also got to meet the beau's of two other daughters, so more weddings likely in the future. Of course, you can't visit Texas without BBQ and that was enjoyed at a local favorite, The Salt Lick in nearby Driftwood. That 5 days also included the first search for a lab.
Next stop, Pensacola, Florida, to see Johanna's sweet baby Bergan. Those 5 days went by quickly when 2 of them also included our flights in and out. But it was worth it to see her smiles and hear her giggles! Jo and I had a good time shopping at the local thrift stores and used book store, which supplied me with some missing volumes of 2 different series I'm reading. We also made a trip into Pensacola to Sacred Heart Hospital for the weekly labs. I am now in their system so for future trips to Pensacola, it will be easy to show up with my orders and quickly get my labs done. This week's report showed a very low nuetrophil count so a shot was required.
The last leg of our trip was a flight to Amarillo, Texas, followed by a 2 hour drive north the next morning to Perryton, where my niece Marcy & family live. This is my oldest brother Ernie's daughter. We got to visit with all 3 of her daughters and the one son-in-law. Most importantly, we met Marcy's grandson, my great-great nephew, Bodie. What a cutie and did we get the smiles! It was a great few days of visiting and eating! Son Jeb is now in Oregon and we do get to see him occasionally.
It was finally home and time to face reality. A bone marrow biopsy was waiting for me the day after we arrived home. Then appointments with my docs at UCSF and locally. There was no significant change since the first 2 cycles last summer of this current drug combo. These last 8 cycles have just been holding it at around 30% plasma cells (cancer) in the bone marrow. My doc at UCSF was pleased with the results but I was actually disappointed the numbers hadn't gone down some more. His recommendation was to continue with the same combo only the infusion dose has been altered to accommodate just one trip each week rather than two. What that means is I'm getting 1st day dose plus 1/2 of second day dose in one day. So even though I'm getting more chemo drug on that one day, I'm actually getting a reduced amount of this drug overall. No more additional hydration required during the infusion. My weekly dose of steroids will now be taken the night before infusion. This will cut down on my time away from home and will be a welcome relief with the price of gas.
This new regimen began Tuesday, 6/10. To be sure I was going to do okay with increased dosage, I didn't begin my oral chemo drugs until the next day. Because I've been having so much difficulty sleeping and the fatigue really sets in a few hours after I take my chemo pill, the pharmacist has recommended I take it at night before bed. Fortunately, I have not experienced any nausea from this drug. Just have to be sure it has been 2 hours after eating and that I have gotten well-hydrated during the day.
My doc at UCSF wants to see me in 3 months with a current bone marrow biopsy. Not sure if I can get 3 cycles of treatment completed by then because I have to stop treatment for the biopsies when they are done locally. So there is still consideration being given to going to UCSF to have them done as they do them in the clinic and do not require you to stop treatment.
It was sure nice to have a "chemo holiday"! A four week break. Blood counts almost got back to normal, neuropathy improved a little, less fatigue, brain functioning a little better. A person forgets what it's like to not be living everyday with the struggles of dealing with ongoing treatment. In spite of the side effects I continually deal with, I'm very grateful to have most of my hair and not experience a lot of nausea. I actually look much healthier than I am due to the weight gain and the rosy cheeks my drugs provide!
We are so grateful for the continued prayers, love and support from our friends and family!! This has been a long, challenging journey, but I am grateful to be alive and enjoying our grandchildren - all of whom have been born since my diagnosis.
I am reminded daily that "His mercies are new every morning; great is Thy faithfulness"!
First stop, Austin, Texas, for my niece's wedding! It was a great 5 days of celebration and visiting with my 4 nieces, the daughters of my youngest brother, Hal. In addition to meeting my brother's new son-in-law, we also got to meet the beau's of two other daughters, so more weddings likely in the future. Of course, you can't visit Texas without BBQ and that was enjoyed at a local favorite, The Salt Lick in nearby Driftwood. That 5 days also included the first search for a lab.
Next stop, Pensacola, Florida, to see Johanna's sweet baby Bergan. Those 5 days went by quickly when 2 of them also included our flights in and out. But it was worth it to see her smiles and hear her giggles! Jo and I had a good time shopping at the local thrift stores and used book store, which supplied me with some missing volumes of 2 different series I'm reading. We also made a trip into Pensacola to Sacred Heart Hospital for the weekly labs. I am now in their system so for future trips to Pensacola, it will be easy to show up with my orders and quickly get my labs done. This week's report showed a very low nuetrophil count so a shot was required.
The last leg of our trip was a flight to Amarillo, Texas, followed by a 2 hour drive north the next morning to Perryton, where my niece Marcy & family live. This is my oldest brother Ernie's daughter. We got to visit with all 3 of her daughters and the one son-in-law. Most importantly, we met Marcy's grandson, my great-great nephew, Bodie. What a cutie and did we get the smiles! It was a great few days of visiting and eating! Son Jeb is now in Oregon and we do get to see him occasionally.
It was finally home and time to face reality. A bone marrow biopsy was waiting for me the day after we arrived home. Then appointments with my docs at UCSF and locally. There was no significant change since the first 2 cycles last summer of this current drug combo. These last 8 cycles have just been holding it at around 30% plasma cells (cancer) in the bone marrow. My doc at UCSF was pleased with the results but I was actually disappointed the numbers hadn't gone down some more. His recommendation was to continue with the same combo only the infusion dose has been altered to accommodate just one trip each week rather than two. What that means is I'm getting 1st day dose plus 1/2 of second day dose in one day. So even though I'm getting more chemo drug on that one day, I'm actually getting a reduced amount of this drug overall. No more additional hydration required during the infusion. My weekly dose of steroids will now be taken the night before infusion. This will cut down on my time away from home and will be a welcome relief with the price of gas.
This new regimen began Tuesday, 6/10. To be sure I was going to do okay with increased dosage, I didn't begin my oral chemo drugs until the next day. Because I've been having so much difficulty sleeping and the fatigue really sets in a few hours after I take my chemo pill, the pharmacist has recommended I take it at night before bed. Fortunately, I have not experienced any nausea from this drug. Just have to be sure it has been 2 hours after eating and that I have gotten well-hydrated during the day.
My doc at UCSF wants to see me in 3 months with a current bone marrow biopsy. Not sure if I can get 3 cycles of treatment completed by then because I have to stop treatment for the biopsies when they are done locally. So there is still consideration being given to going to UCSF to have them done as they do them in the clinic and do not require you to stop treatment.
It was sure nice to have a "chemo holiday"! A four week break. Blood counts almost got back to normal, neuropathy improved a little, less fatigue, brain functioning a little better. A person forgets what it's like to not be living everyday with the struggles of dealing with ongoing treatment. In spite of the side effects I continually deal with, I'm very grateful to have most of my hair and not experience a lot of nausea. I actually look much healthier than I am due to the weight gain and the rosy cheeks my drugs provide!
We are so grateful for the continued prayers, love and support from our friends and family!! This has been a long, challenging journey, but I am grateful to be alive and enjoying our grandchildren - all of whom have been born since my diagnosis.
I am reminded daily that "His mercies are new every morning; great is Thy faithfulness"!
Monday, May 5, 2014
It's May already?!
It has been awhile since I have been able to post an update here. I am happy to report it is because I have been busy with visitors and not from being too ill. The month of February brought all of my kids home for a visit. So fun to have everyone here! Some were able to stay longer than others and, of course, Jeremy's family lives close by. What a blessing it is to enjoy my 5 grandchildren, all of whom have been born since my diagnosis. That's a lot of energy and activity under one roof! March brought various friends from Canada who stopped by during their travels. My friend from Belgium, who used to live here, also arrived in March for an extended visit and will be returning home soon.
Treatment continues for one more cycle then another bone marrow biopsy the middle of May. Appointment the first week of June with doc at UCSF for assessment and decisions regarding ongoing treatment. Weekly blood tests also continue and am thankful veins in my arms are holding up. I try to rotate which arm I offer the Lab Tech so one arm doesn't get used more than the other. However, my right arm is beginning to show signs of wear and is not always dependable so I sometimes get multiple "sticks". Neuropathy in my feet, lower legs and fingers has increased, but am hoping it will improve a little during this next break in treatment.
The results of my sleep study did show a mild case of sleep apnea and shallow breathing. I went back for a second study to try various C-PAP masks and see if I was able to sleep for a longer period of time. Now the ongoing process of meeting with the medical equipment provider and trying to get the right mask and the machine adjusted properly for my comfort has been challenging. Also, I still struggle with the challenges of medications that interfere with good sleep. But we are beginning to make some progress and a few nights a week I am getting better quality of sleep; although, I still wake up frequently during the night. Once in a while I have actually slept for 4 or 5 hours. Consequently, there are days that I am beginning to feel more rested, more alert and a little less shaky.
My new challenge has been my skin. Three trips to the dermatologist so far to monitor suspicious appearing spots. She suspects they are reactions to all the chemo drugs over so many years, but biopsies cannot be done while I'm on chemo. So, May will not only bring a short break in treatment and a bone marrow biopsy, but also some skin biopsies.
Challenges have also continued with all of the new computer programs at medical facilities, but seem to be getting somewhat resolved in recent weeks. At one place, someone entered into my profile that I was a smoker, so now every time I go there they have to talk to me about whether I still smoke or have I done a smoke cessation program or need to do a program! Since I've never been a smoker this has been a little frustrating and no one seems to be able to correct it.
We had Ty with us the weekend before Easter. Mimi's special waffles are always on the menu for breakfast when he is here. Our friend, Kim, had her grandson the same weekend, so we all went to the show, the boys fished in the pond, had a bbq at our place followed by s'mores, went to the carnival at the Mall. We didn't color Easter eggs, but I did introduce him to pickled eggs. Any of my cousins remember those? I always make some at Easter and share them with another friend who also likes them and his wife doesn't make them for him. So it's our little Easter tradition.
Easter was a quiet day of reflection for us. Church was too crowded so we "churched" on the TV with some of our favorite pastors, as we do many Sundays due to my blood counts and treatment schedules. We met Jeremy & family for late morning brunch and enjoyed a long nap in the afternoon.
We pray that Easter was also a day of reflection for you as we remember how He gave his life that we might have life eternal.
Treatment continues for one more cycle then another bone marrow biopsy the middle of May. Appointment the first week of June with doc at UCSF for assessment and decisions regarding ongoing treatment. Weekly blood tests also continue and am thankful veins in my arms are holding up. I try to rotate which arm I offer the Lab Tech so one arm doesn't get used more than the other. However, my right arm is beginning to show signs of wear and is not always dependable so I sometimes get multiple "sticks". Neuropathy in my feet, lower legs and fingers has increased, but am hoping it will improve a little during this next break in treatment.
The results of my sleep study did show a mild case of sleep apnea and shallow breathing. I went back for a second study to try various C-PAP masks and see if I was able to sleep for a longer period of time. Now the ongoing process of meeting with the medical equipment provider and trying to get the right mask and the machine adjusted properly for my comfort has been challenging. Also, I still struggle with the challenges of medications that interfere with good sleep. But we are beginning to make some progress and a few nights a week I am getting better quality of sleep; although, I still wake up frequently during the night. Once in a while I have actually slept for 4 or 5 hours. Consequently, there are days that I am beginning to feel more rested, more alert and a little less shaky.
My new challenge has been my skin. Three trips to the dermatologist so far to monitor suspicious appearing spots. She suspects they are reactions to all the chemo drugs over so many years, but biopsies cannot be done while I'm on chemo. So, May will not only bring a short break in treatment and a bone marrow biopsy, but also some skin biopsies.
Challenges have also continued with all of the new computer programs at medical facilities, but seem to be getting somewhat resolved in recent weeks. At one place, someone entered into my profile that I was a smoker, so now every time I go there they have to talk to me about whether I still smoke or have I done a smoke cessation program or need to do a program! Since I've never been a smoker this has been a little frustrating and no one seems to be able to correct it.
We had Ty with us the weekend before Easter. Mimi's special waffles are always on the menu for breakfast when he is here. Our friend, Kim, had her grandson the same weekend, so we all went to the show, the boys fished in the pond, had a bbq at our place followed by s'mores, went to the carnival at the Mall. We didn't color Easter eggs, but I did introduce him to pickled eggs. Any of my cousins remember those? I always make some at Easter and share them with another friend who also likes them and his wife doesn't make them for him. So it's our little Easter tradition.
Easter was a quiet day of reflection for us. Church was too crowded so we "churched" on the TV with some of our favorite pastors, as we do many Sundays due to my blood counts and treatment schedules. We met Jeremy & family for late morning brunch and enjoyed a long nap in the afternoon.
We pray that Easter was also a day of reflection for you as we remember how He gave his life that we might have life eternal.
Monday, February 10, 2014
Technology - Good and Bad
New computer programs at medical facilities have complicated my life and treatment! And here's my story as it relates to me. At my appointment with local hem/onc doc following appointment at UCSF, I learned that the dose of my infused drug (Kyprolis) was to be increased. This possibility wasn't discussed when I saw him at UCSF so I was a little surprised. I sent an email to him through the "patient portal" to share some concerns I had regarding higher dose to verify that it would be ok to go ahead in my situation. A response is guaranteed within 2 days which didn't happen. Right after I saw my local doc, he left on vacation. Since the orders were already sent to infusion and I couldn't get a hold of anyone, I started the first 2 infusions at the higher dose.
Also, in the midst of all this, I wasn't hearing from infusion therapy about getting my treatments scheduled. The nurse told me the day I saw my local doc, that I should hear the next day. Records had to go to financial for insurance verification and then to infusion therapy for scheduling. After I hadn't heard anything for a week, I started making phone calls. It turns out the computer in financial was not talking to the computer in infusion! This one week delay may cost me the opportunity to go to my niece's wedding in May! It was going to work out just perfectly and now I'm not sure how we're going to fit the two schedules, but I'm still trying to figure it out.
The other issue that became apparent when I started this cycle, was how it was being administered. UCSF doc had given special instructions regarding combining the two drugs I was taking since each had their own separate and different protocols. The protocol that was in the orders that 1st day were for single agent administration. So, I was getting more steroids with the infusion in addition to the oral dose, 2 days of anti-nausea meds (instead of just one day); also, pre and post hydration. I had no choice but to move forward with what was ordered or further delay getting back on treatment again. I did, however, refuse the post-hydration. It is important for the Kyprolis to get flushed through the kidneys and I drink lots of fluids on my own so putting a lot more into my veins can overload me.
When I arrived home from my second dose, the email response (8 days after my email) was waiting for me from my USCF doc saying he didn't intend to increase dosage, wanted treatment to continue the same. Told me to print his email and give to doc here. I faxed it to his office so changes would be made when I showed up for next infusion. When I arrived I find out all that had been done is dosage changed, everything else the same. The steroids were already mixed into the anti-nausea meds so another week with extra steroids (Dexamethasone). The nurses are so great, though, and they know what my routine has been and were trying to help me as much as possible and still stay within their parameters of following orders. My next appointment with my local doc was during the 2nd week of this cycle. That's when I learned of the difficulties they're having with their new computer program. It doesn't allow him to specifically tailor a patients treatment regimen. When a drug is entered for a patient, it automatically puts in the protocol that they entered when the program was set up. They're wanting everyone to use the computers rather than paper but the proper communication isn't happening. I suspect something similar happened with UCSF doc's notes. Dose escalation is standard protocol for Kyprolis. My doses are kept at levels for management of my neuropathy. My local doc is working very hard to get the powers that be to realize that treatment often has to be tailored to each patient and isn't always used according to standard protocol.
I managed ok that first week but knew that the dose definitely had to go back to where it had been. My neuropathy increased significantly in my feet, legs, fingertips, and around my mouth. I was very off-balance for days and had to be very careful when trying to walk. I felt like a boat being rolled by waves. I did fall once, hitting the back of my head; but at least I was close to the ground getting something out of a box and didn't fall far or hit very hard. The back of my head hit the side of a table as I fell backwards. Thanks to Steve's quick response with an ice pack, no blood, no big bump just a slight headache and sore neck for a day.
Weakness from treatment has made it difficult to determine if back pain is from that or more problems with my spine. It had been a year since my last MRI so doc felt we needed to take a current look at my complete spine. It was already scheduled when I had my fall the day before. It was reassuring to know there were no significant changes from last year. I do like their new computer program as the report was written in a very organized and detailed manner making it easy to assess exactly what their findings were. Even though this info has been in other reports, this one listed each vertebrae separately, describing the issues for each. It made me even more aware of how fragile my spine really is.
Next on the list was a sleep study. I haven't slept well for years and nurses have begun to notice that my oxygen levels are low and go even lower when I fall asleep during treatment, even to the point of setting off the alarm on the vitals machine. My local hem/onc doc had been suggesting a sleep study for several months and I finally moved forward with that. It required a trip to my primary doc for a referral. I really like her and enjoy our appointments, but it is another day taken up with medical stuff and travel. I was surprised how quickly this all got put into place. Saw her Thursday afternoon. Sleep center called Friday evening. Saw doc there Saturday afternoon. Did my study last night (Sunday night). Of course, I had to take some meds so I would sleep long enough for them to assess me. Nurse told me this morning they got what they needed without laying me completely flat during the night. Said she didn't want to wake me and was worried the change in position would cause my back to hurt and spasm. Since my fractures, I have to lay in a particular position to be comfortable. And, if I lay flat, I know that my throat closes up to the point I can hardly breathe.
My recent birthday was a chemo recovery day, but I was still celebrating having lived to age 65! I never thought that would happen when I was first diagnosed. It was doubtful even a year ago when they discovered my bone marrow was so full of cancer and the 3 different treatment regimens they had tried over the previous 2 years had been ineffective. I still count my blessings and am thankful for each day even though there are many when I am weak, feel lousy and can't accomplish very much. I am reminded of the promise included in the children's song. "....Little ones to Him belong. They are weak, but He is strong. Yes, Jesus Loves Me!" I'm not so little anymore but illness reduces you to child-like faith!
May you all feel loved during this month that celebrates Love! Thank you for the love and prayers for us, and especially the recent birthday greetings!
Also, in the midst of all this, I wasn't hearing from infusion therapy about getting my treatments scheduled. The nurse told me the day I saw my local doc, that I should hear the next day. Records had to go to financial for insurance verification and then to infusion therapy for scheduling. After I hadn't heard anything for a week, I started making phone calls. It turns out the computer in financial was not talking to the computer in infusion! This one week delay may cost me the opportunity to go to my niece's wedding in May! It was going to work out just perfectly and now I'm not sure how we're going to fit the two schedules, but I'm still trying to figure it out.
The other issue that became apparent when I started this cycle, was how it was being administered. UCSF doc had given special instructions regarding combining the two drugs I was taking since each had their own separate and different protocols. The protocol that was in the orders that 1st day were for single agent administration. So, I was getting more steroids with the infusion in addition to the oral dose, 2 days of anti-nausea meds (instead of just one day); also, pre and post hydration. I had no choice but to move forward with what was ordered or further delay getting back on treatment again. I did, however, refuse the post-hydration. It is important for the Kyprolis to get flushed through the kidneys and I drink lots of fluids on my own so putting a lot more into my veins can overload me.
When I arrived home from my second dose, the email response (8 days after my email) was waiting for me from my USCF doc saying he didn't intend to increase dosage, wanted treatment to continue the same. Told me to print his email and give to doc here. I faxed it to his office so changes would be made when I showed up for next infusion. When I arrived I find out all that had been done is dosage changed, everything else the same. The steroids were already mixed into the anti-nausea meds so another week with extra steroids (Dexamethasone). The nurses are so great, though, and they know what my routine has been and were trying to help me as much as possible and still stay within their parameters of following orders. My next appointment with my local doc was during the 2nd week of this cycle. That's when I learned of the difficulties they're having with their new computer program. It doesn't allow him to specifically tailor a patients treatment regimen. When a drug is entered for a patient, it automatically puts in the protocol that they entered when the program was set up. They're wanting everyone to use the computers rather than paper but the proper communication isn't happening. I suspect something similar happened with UCSF doc's notes. Dose escalation is standard protocol for Kyprolis. My doses are kept at levels for management of my neuropathy. My local doc is working very hard to get the powers that be to realize that treatment often has to be tailored to each patient and isn't always used according to standard protocol.
I managed ok that first week but knew that the dose definitely had to go back to where it had been. My neuropathy increased significantly in my feet, legs, fingertips, and around my mouth. I was very off-balance for days and had to be very careful when trying to walk. I felt like a boat being rolled by waves. I did fall once, hitting the back of my head; but at least I was close to the ground getting something out of a box and didn't fall far or hit very hard. The back of my head hit the side of a table as I fell backwards. Thanks to Steve's quick response with an ice pack, no blood, no big bump just a slight headache and sore neck for a day.
Weakness from treatment has made it difficult to determine if back pain is from that or more problems with my spine. It had been a year since my last MRI so doc felt we needed to take a current look at my complete spine. It was already scheduled when I had my fall the day before. It was reassuring to know there were no significant changes from last year. I do like their new computer program as the report was written in a very organized and detailed manner making it easy to assess exactly what their findings were. Even though this info has been in other reports, this one listed each vertebrae separately, describing the issues for each. It made me even more aware of how fragile my spine really is.
Next on the list was a sleep study. I haven't slept well for years and nurses have begun to notice that my oxygen levels are low and go even lower when I fall asleep during treatment, even to the point of setting off the alarm on the vitals machine. My local hem/onc doc had been suggesting a sleep study for several months and I finally moved forward with that. It required a trip to my primary doc for a referral. I really like her and enjoy our appointments, but it is another day taken up with medical stuff and travel. I was surprised how quickly this all got put into place. Saw her Thursday afternoon. Sleep center called Friday evening. Saw doc there Saturday afternoon. Did my study last night (Sunday night). Of course, I had to take some meds so I would sleep long enough for them to assess me. Nurse told me this morning they got what they needed without laying me completely flat during the night. Said she didn't want to wake me and was worried the change in position would cause my back to hurt and spasm. Since my fractures, I have to lay in a particular position to be comfortable. And, if I lay flat, I know that my throat closes up to the point I can hardly breathe.
My recent birthday was a chemo recovery day, but I was still celebrating having lived to age 65! I never thought that would happen when I was first diagnosed. It was doubtful even a year ago when they discovered my bone marrow was so full of cancer and the 3 different treatment regimens they had tried over the previous 2 years had been ineffective. I still count my blessings and am thankful for each day even though there are many when I am weak, feel lousy and can't accomplish very much. I am reminded of the promise included in the children's song. "....Little ones to Him belong. They are weak, but He is strong. Yes, Jesus Loves Me!" I'm not so little anymore but illness reduces you to child-like faith!
May you all feel loved during this month that celebrates Love! Thank you for the love and prayers for us, and especially the recent birthday greetings!
Wednesday, January 15, 2014
What's new in January?
The holidays are behind us for another year. The Christmas decorations are all upstairs in one room now waiting for me to sort and either put away, pass to one of the kids, or put in the yard sale box. January brings continued dry, sunny days that are difficult to enjoy when we so desperately need rain. It is also a time we think of new beginnings. My new beginnings are taxing my poor chemo brain - new cell phone, new Kindle, newer used car with all kinds of computerized stuff, new satellite TV provider. I must say, though, the satellite TV remote is much easier than the last one and thanks to my daughter-in-law, Lyn, I think I've got the Kindle figured out. The Kindle (a Christmas gift from my kids) will be so much easier to carry to chemo for reading, and a book will always be available. No more emergency trips to book stores, thrift stores, yard sales, or desperate phone calls to friends cause I need more books to read!
Steve & I both caught a cold/bronchitis virus that has been going around our area. We've been able to avoid such things for a number of years now, but many more are ill this year than in previous seasons. We've both just about completely recovered; me with the aid of antibiotics and what I felt was an unnecessary trip to the ER in Chico on the 4th. When my fever came up, the local walk-in clinic wanted me to contact the oncologist on-call before they saw me. All my labs from the previous week had not gotten entered into the computer at the doctor's office so oncologist on call was concerned my white count was too low. Since the walk-in clinic couldn't do the labs required, I had to go to Chico. I was pretty sure my white count was ok, but had to jump through the hoops to get the antibiotics that I knew I needed. Thinking I was just going to have labs done, I was surprised that I had to go through the whole ER process when I got there - gown up, a bed in a cubicle, vitals, IV, blood test (which I was expecting), blood cultures (really?), X-ray. I never did see the oncologist. She handled everything by phone with ER doc. It was a long day to say the least.
Fortunately, I was well enough on Monday, the 6th, to get my bone marrow biopsy done. I was restricted from food and water after midnight so was glad my procedure was scheduled for 9 am. However, no water when you are struggling with a cough is challenging! I ate lots of cough drops and gargled with water to keep the back of my throat moist. Different doc again this time for the biopsy. He was agreeable regarding the sedation and looked up the records from the doc who had been successful at getting me adequately sedated. Had the report in my hands by Friday. It was a sub-optimal sample, but they were able to determine that there had been pretty much no change from previous biopsy. It was good new/bad news. Good news that the numbers hadn't gone up. Bad news that there was no progress.
So where does that leave things now? Saw my doc at UCSF yesterday. He didn't seem very concerned that numbers were the same. He still monitors the free-light chains and they were going down and were actually in the normal range. They can't be used for monitoring my cancer load, but they do indicate progress by whether they are going up or down. He has ordered 4 more cycles of the same treatment then another biopsy will be done. He said things are almost to a point where he could harvest stem cells and freeze them for possible transplant in the future. Right now, all I can think about is getting into a good remission again and have some recovery time without ongoing chemo. It does take a toll on a mind and body.
Thank you for the many cards and letters at Christmas! After all the years of diligently sending a family letter to our families and many friends, it was one of the things that I've had to let go the last few years. But we love receiving news from everyone as we live a pretty isolated life these days.
Praying for blessings for all in the coming year!
Steve & I both caught a cold/bronchitis virus that has been going around our area. We've been able to avoid such things for a number of years now, but many more are ill this year than in previous seasons. We've both just about completely recovered; me with the aid of antibiotics and what I felt was an unnecessary trip to the ER in Chico on the 4th. When my fever came up, the local walk-in clinic wanted me to contact the oncologist on-call before they saw me. All my labs from the previous week had not gotten entered into the computer at the doctor's office so oncologist on call was concerned my white count was too low. Since the walk-in clinic couldn't do the labs required, I had to go to Chico. I was pretty sure my white count was ok, but had to jump through the hoops to get the antibiotics that I knew I needed. Thinking I was just going to have labs done, I was surprised that I had to go through the whole ER process when I got there - gown up, a bed in a cubicle, vitals, IV, blood test (which I was expecting), blood cultures (really?), X-ray. I never did see the oncologist. She handled everything by phone with ER doc. It was a long day to say the least.
Fortunately, I was well enough on Monday, the 6th, to get my bone marrow biopsy done. I was restricted from food and water after midnight so was glad my procedure was scheduled for 9 am. However, no water when you are struggling with a cough is challenging! I ate lots of cough drops and gargled with water to keep the back of my throat moist. Different doc again this time for the biopsy. He was agreeable regarding the sedation and looked up the records from the doc who had been successful at getting me adequately sedated. Had the report in my hands by Friday. It was a sub-optimal sample, but they were able to determine that there had been pretty much no change from previous biopsy. It was good new/bad news. Good news that the numbers hadn't gone up. Bad news that there was no progress.
So where does that leave things now? Saw my doc at UCSF yesterday. He didn't seem very concerned that numbers were the same. He still monitors the free-light chains and they were going down and were actually in the normal range. They can't be used for monitoring my cancer load, but they do indicate progress by whether they are going up or down. He has ordered 4 more cycles of the same treatment then another biopsy will be done. He said things are almost to a point where he could harvest stem cells and freeze them for possible transplant in the future. Right now, all I can think about is getting into a good remission again and have some recovery time without ongoing chemo. It does take a toll on a mind and body.
Thank you for the many cards and letters at Christmas! After all the years of diligently sending a family letter to our families and many friends, it was one of the things that I've had to let go the last few years. But we love receiving news from everyone as we live a pretty isolated life these days.
Praying for blessings for all in the coming year!
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