Mike.
Wednesday, August 14, 2013
Final update for Sarah
Sarah passed away this morning at 5:55am, resting comfortably with her sister Janet by her side. Irrepressible smile, indomitable spirit, that is Sarah's legacy. She enthusiastically embraced all that is good in this life, she was the embodiment of joy! She leaves our lives richer, our hearts brighter for having known her. Sarahlight! She taught me to strive to choose love over fear. Thank you, we love you, we miss you Sarah Beck!
Mike.
Mike.
Friday, June 28, 2013
Mike's Update on Sarah
This is an update written by Mike Maulsby, my hero. The last few weeks have been pretty hard for me and the pain meds and antibiotics cause me to be spacey and woozy, weepy and nauseated, thus making it really hard for me to focus and stay awake long enough to write an update. (I have nodded off many times already just writing this one paragraph.) Anyway, here it is.
Since returning home from the
hospital where she spent nine days receiving IV antibiotics for the recurring
blood infection, Sarah (and thus I) has been totally maxed out.
The antibiotic IVs make her sick and fuzzy headed and are to continue for a total
of six weeks, three times a day. This is to totally knock-out any hidden areas
of the infection that may be causing the recurrence.
She is experiencing intense
pain in her legs and hip area which requires narcotic pain relievers to manage.
These meds put a damper on her thought process; she has trouble thinking
clearly and tends to nod off occasionally for brief periods. We are nonetheless
so grateful that the pain is under control. Deterioration of lower back
vertebrae is the suspected cause, putting pressure on the sciatic nerve. It
hasn’t yet been definitively determined how much of the disk deterioration is
due to cancer spread, but it does appear that there is cancer activity in that
area.
Sarah has an unmanageable
schedule of appointments and treatments: home antibiotic IVs 3x/day, vitamin C
IVs 2-3x/week, IPT treatments in Santa Fe 2x/week, weekly appointments at the
Infectious Disease clinic, twice daily coffee enemas, home nebulizer treatments nightly, when possible
appointments with her chiropractor, acupuncturist and primary care NP. Add
appointments with the oncologist, the oncologist’s assistant, and schedule an
X-Ray and MRI somewhere in between, and you get the picture.
Due to the pain meds, Sarah
can’t drive. We've been blessed with the help of neighbors and friends to pitch
in and help out with transportation. Sarah’s diet has to be especially good
now. She doesn't have the time or energy to cook, so we've been ordering out
from some of the healthier restaurants nearby and relying on friends and neighbors
to help with shopping.
Sarah is experiencing some
incontinence issues as well as swelling feet and lower legs. She coughs
regularly and experiences occasional nausea and vomiting due to the
antibiotics.
Here’s the bottom line with
Sarah: irrepressible smile, indomitable spirit. Right?! The most
courageous person I know.
Saturday, June 15, 2013
Bumps in the Road
This will be a short update with very little commentary.
I am in the hospital; here since Tuesday night and as of now I do not know how long I will be here. We are still dealing with the same blood infection I mentioned in the last post. We've gotten clean cultures several times and I was back to getting the Vitamin C infusions and had worked back up to 125 grams. But in May the fevers started again and blood cultures were drawn and I was treated with oral Bactrim and got the PICC line removed and a new one placed and got a clean culture again but in no time the fevers came back. Very frustrating!
So, then I say I am willing to do almost anything to treat it, short of going the ER route into the hospital.The infusion center stopped my Vitamin C infusions and recommended the ER route to the hospital for IV antibiotics again. I told them I would be happy to get a consult with their ID (infectious disease) doc on staff and do the IV antibiotics at home if they can set it all up for me. I was even willing to do four infusions daily. In the meantime I was having more coughing and more congestion and had developed new lumps along my jaw line and neck, as well as new sciatica pain in my left butt/thigh (a very new and never seen before symptom and three chiropractic adjustments and one acupuncture treatment didn't touch the pain).
Time for some new scans; I got a next day appointment with the PA (physician's assistant) at the NM Cancer Center (her first name is Darling, lovely woman) and she ordered a PET/CT scan for last Monday.
After the scan on Monday I got in to see Dr Andrea DeMeter, the ID doc at the infusion center for a consult. She was very thorough and said we need to go to the hospital and do IV Meropenem and do the necessary testing to find where in my body the Burkholderia Cepecia Complex is hiding. She thought that we've kept the Burky bug (my name for it) at bay enough to get it out of the blood, thus clean blood cultures. But it is a colonizer and can attach to blood vessels, joints, PICC lines, and any foreign devices in the body, and can thus surface again. Dr DeMeter thought my situation was very serious (even though she, like most medical people I've talked to, has not encountered the Burky bug), and that the burky bug could be hiding in my heart valves (endocarditis) and she said she was willing to work to get me a direct admit to the hospital through the ID doctors group that has privileges at Presbyterian Hospital. It was very nice of her to be willing to go the extra mile for me this way.
The last CT scan in March showed shrinkage of some tumors and no growth in others, good news. The scan last Tuesday showed increase in some of the tumors and lymph nodes plus new areas of inflammation. Both cancer and inflammation light up the same on a PET scan so further investigation was necessary to tease out what is what. But the scan didn't show anything to explain the severe pain I've been experiencing in the left butt/thigh. There were several places that were suspicious of bone metastasis but not definitive.One thing it did show was pneumonia in my right lung. Once I saw that I decided I'd take Dr DeMeter up on her offer to get the direct admit, so the phone calls began. Next thing I knew I was told to show up to the hospital at 6:30 pm.
In hospital I've had IV Meropenem, my PICC line removed, a full body bone scan, two echocardiograms (one transthoracic, and one with an esophageal probe). The echocardiograms showed no infection, Yay! The info on the bone scan I've received is sketchy. One of the ID docs who has seen me once and never returned, and who has zero bedside manner and no communication skills, made an offhand comment that I had bone metasteses and that a bone scan cannot show infection. I've gotten conflicting info from others so I'm not sure of anything now.
I have a very sweet, kind and polite hospital doc who is from Egypt, very handsome. He gets the info for me from the ID Doc that I refer to as Dr Dull, or Sans Character and passes on what he can but he didn't even know about my pain and that I was on narcotics, so even he is lacking in the communication area. Today and yesterday I heard from him that they have changed their minds about the original plan to keep me here for 4 to 5 days and give me a new PICC and send me home with IV antibiotics home care. Now, I'm being told they want to wait a week or two to place the new PICC. So how I can go home with a regular IV line and get my antibiotics and my Vitamin C infusions and my IPT treatments is a mystery. No ID docs are communicating. I have been told several times that Dr Dull is making rounds but he's not been by to see me for 2 days. WORD!
The pain is still bad and barely managed with a Fentanyl patch, Norco, Ibuprofen, and morphine shots. Standing and walking are better than sitting in the bed. Lying flat is the best.
The nursing staff here are great and the food is decent. I know enough about my health issues to demand they inform me of what decisions are made and what orders they do. But with the communication so lacking I get a bit frustrated. The narcotics do help the mood though, and take the edge off enough that I can maintain a pretty good mood through the ups and downs of all the mistakes made in a hospital. And I do have a private room, so that makes it tolerable.
Questions to be resolved:
Where is the Burky bug hiding out?
Who will give me a copy of the bone scan? Some policy here says they cannot give me a copy but when I was here a year ago there were docs who took it upon themselves to print out a copy for me in spite of the hospital policy. They were women.
How can I get my IVs done at home with no PICC?
What if I get re-exposed to the Burky bug while still getting IV Meropenam; will it kill it and I have no need to worry?
What the hell is causing the left side sciatica? All the spine issues on the bone scan do not correlate to the sciatic nerve.
As always, Mike is my hero and is taking good care of me and my needs, coming back and forth with things I need from home and taking care of Wiley and comforting him when he gets anxious without me there, plus working full time. He's the best!
Please do not worry about me. Send me love; I always say my body knows what to do with that!
Now for a photo of Mike and me at Christmas in Richmond.
I am in the hospital; here since Tuesday night and as of now I do not know how long I will be here. We are still dealing with the same blood infection I mentioned in the last post. We've gotten clean cultures several times and I was back to getting the Vitamin C infusions and had worked back up to 125 grams. But in May the fevers started again and blood cultures were drawn and I was treated with oral Bactrim and got the PICC line removed and a new one placed and got a clean culture again but in no time the fevers came back. Very frustrating!
So, then I say I am willing to do almost anything to treat it, short of going the ER route into the hospital.The infusion center stopped my Vitamin C infusions and recommended the ER route to the hospital for IV antibiotics again. I told them I would be happy to get a consult with their ID (infectious disease) doc on staff and do the IV antibiotics at home if they can set it all up for me. I was even willing to do four infusions daily. In the meantime I was having more coughing and more congestion and had developed new lumps along my jaw line and neck, as well as new sciatica pain in my left butt/thigh (a very new and never seen before symptom and three chiropractic adjustments and one acupuncture treatment didn't touch the pain).
Time for some new scans; I got a next day appointment with the PA (physician's assistant) at the NM Cancer Center (her first name is Darling, lovely woman) and she ordered a PET/CT scan for last Monday.
After the scan on Monday I got in to see Dr Andrea DeMeter, the ID doc at the infusion center for a consult. She was very thorough and said we need to go to the hospital and do IV Meropenem and do the necessary testing to find where in my body the Burkholderia Cepecia Complex is hiding. She thought that we've kept the Burky bug (my name for it) at bay enough to get it out of the blood, thus clean blood cultures. But it is a colonizer and can attach to blood vessels, joints, PICC lines, and any foreign devices in the body, and can thus surface again. Dr DeMeter thought my situation was very serious (even though she, like most medical people I've talked to, has not encountered the Burky bug), and that the burky bug could be hiding in my heart valves (endocarditis) and she said she was willing to work to get me a direct admit to the hospital through the ID doctors group that has privileges at Presbyterian Hospital. It was very nice of her to be willing to go the extra mile for me this way.
The last CT scan in March showed shrinkage of some tumors and no growth in others, good news. The scan last Tuesday showed increase in some of the tumors and lymph nodes plus new areas of inflammation. Both cancer and inflammation light up the same on a PET scan so further investigation was necessary to tease out what is what. But the scan didn't show anything to explain the severe pain I've been experiencing in the left butt/thigh. There were several places that were suspicious of bone metastasis but not definitive.One thing it did show was pneumonia in my right lung. Once I saw that I decided I'd take Dr DeMeter up on her offer to get the direct admit, so the phone calls began. Next thing I knew I was told to show up to the hospital at 6:30 pm.
In hospital I've had IV Meropenem, my PICC line removed, a full body bone scan, two echocardiograms (one transthoracic, and one with an esophageal probe). The echocardiograms showed no infection, Yay! The info on the bone scan I've received is sketchy. One of the ID docs who has seen me once and never returned, and who has zero bedside manner and no communication skills, made an offhand comment that I had bone metasteses and that a bone scan cannot show infection. I've gotten conflicting info from others so I'm not sure of anything now.
I have a very sweet, kind and polite hospital doc who is from Egypt, very handsome. He gets the info for me from the ID Doc that I refer to as Dr Dull, or Sans Character and passes on what he can but he didn't even know about my pain and that I was on narcotics, so even he is lacking in the communication area. Today and yesterday I heard from him that they have changed their minds about the original plan to keep me here for 4 to 5 days and give me a new PICC and send me home with IV antibiotics home care. Now, I'm being told they want to wait a week or two to place the new PICC. So how I can go home with a regular IV line and get my antibiotics and my Vitamin C infusions and my IPT treatments is a mystery. No ID docs are communicating. I have been told several times that Dr Dull is making rounds but he's not been by to see me for 2 days. WORD!
The pain is still bad and barely managed with a Fentanyl patch, Norco, Ibuprofen, and morphine shots. Standing and walking are better than sitting in the bed. Lying flat is the best.
The nursing staff here are great and the food is decent. I know enough about my health issues to demand they inform me of what decisions are made and what orders they do. But with the communication so lacking I get a bit frustrated. The narcotics do help the mood though, and take the edge off enough that I can maintain a pretty good mood through the ups and downs of all the mistakes made in a hospital. And I do have a private room, so that makes it tolerable.
Questions to be resolved:
Where is the Burky bug hiding out?
Who will give me a copy of the bone scan? Some policy here says they cannot give me a copy but when I was here a year ago there were docs who took it upon themselves to print out a copy for me in spite of the hospital policy. They were women.
How can I get my IVs done at home with no PICC?
What if I get re-exposed to the Burky bug while still getting IV Meropenam; will it kill it and I have no need to worry?
What the hell is causing the left side sciatica? All the spine issues on the bone scan do not correlate to the sciatic nerve.
As always, Mike is my hero and is taking good care of me and my needs, coming back and forth with things I need from home and taking care of Wiley and comforting him when he gets anxious without me there, plus working full time. He's the best!
Please do not worry about me. Send me love; I always say my body knows what to do with that!
Now for a photo of Mike and me at Christmas in Richmond.
Tuesday, April 30, 2013
No news is good news, but that doesn't mean it's been an easy time.
Today was a very hard day, quite the ordeal. I was sick, emotional, mean and cranky. And Mike was with me the whole way, smoothing, soothing, focusing, and centering. What a guy! I love you, Mike!
I've been crashed since January with no energy to post a blog entry, hence folks are wondering what's been happening with me. My last postings were so upbeat and positive; I was waiting for the same energy to return before I posted again. But I've found that that energy doesn't stay here long enough for me to get focused enough to write, so I'm posting anyway, upbeat or not.
I had great energy through December and traveled back to Richmond for a week at Christmas with Mike. We stayed with my sister Janet's family (Janet Beck Thoroman and Jim, Carrie and Anna Thoroman) and then with Jean and Tom Washburn (my stepmother and her husband). I had phenomenal energy the whole time and kept up a steady pace of visiting with family and reconnecting with old friends. It was the best trip I've had in a very long time.
Then after a few days home I crashed and have not recovered since. I'm accustomed to overdoing it at Christmas and then being low in January and gradually regaining my strength, but this was worse. Then I started spiking fevers. (the fevers were kinda fun at first because my body has not been able to make a fever for years; I've always had very low temperatures.) The blood cultures showed a bacterial infection. My IPT doc said it was something she'd seen several times before in patients with PICC lines and it was not serious and we could address it gently. The conventional medical folks at the infusion center where I get my Vitamin C infusions were all in a panic and said I was septic and demanded I go to the ER, get admitted to the hospital and get on high dose IV antibiotics. When I refused their orders, I was dismissed. (I'm such a bad patient.)
So from the beginning of February I was without my three times a week 125 grams of Vitamin C infusions. And I had a blood infection, probably in my PICC line. And I was weak and lethargic. Chronic fatigue syndrome revisited. And I started a new chemo drug combo with my IPT. The last CT scan had shown the tumors and lymph nodes were stable. We'd done the genetic testing to determine what chemo drugs were best suited for my cancer and so we changed drugs to get better results.
The new drugs were hard on me, especially one. My blood counts decreased gradually and I got weaker and weaker and I was still having fevers. We tried several natural treatments for the bacterial infection but the cultures kept coming back positive. So we did oral antibiotics, still positive blood culture. Then a course of mild IV antibiotics, still positive culture. In the meantime, I'm feeling really lousy from the chemo drugs (IPT only uses a fraction of the standard chemo dose and most people tolerate it well but I am a sensitive weenie with long history of chronic fatigue syndrome and an already weak immune system so I'm not like most people.)
After 9 treatments with the new chemo drugs we got a CT scan that showed definite shrinkage. But by then I was so weak I begged to stop the harshest one so we switched to another one that had shown high sensitivity to my cancer on the genetic test. By then I was doing home infusions of a more powerful antibiotic to wipe out the blood infection. And yes, all this made me feel even more weak and drained. But I could have felt worse...My IPT doc had been giving me high nutrient infusions with lots of vitamins, minerals, antioxidants, amino acids and lots more good stuff to boost me and keep me strong and to balance out the harshness of the chemo and the antibiotics. She works hard to figure out what is going on with me and tries to tailor the treatments to address my weaknesses. I'm quite the complicated case for her and she sticks right with me through it all, never giving up and always problem solving and seeing what works and what doesn't work. Like iron infusions, Yay! they helped alot.
So presently, I finally got back into the infusion center on April 19th after getting a negative blood culture. I'm getting 50 grams of Vitamin C three times a week and working back up to the high dose gradually. The newest chemo drug has turned out to be harder on me than the last one and I've lost some hair, I've gotten very very sensitive to chemicals, and I react to just about everything in the environment. I'm wearing a mask a lot when I am around people or outside because I get sick from synthetic fragrances, exhaust fumes, and now I think I've developed hay fever. I've been sick for a week with what I thought was a cold but it may just be seasonal allergies. All I know is I've been running a low grade fever at times, I'm runny and stuffy, I'm sleeping all day, and I feel like shit.
Back to today, it was an ordeal. I'm tired of feeling tired. I was doing fine on just the Vitamin C infusions and they were strengthening me. The IPT was tolerable until I got the blood infection and the Vitamin C infusions were stopped. The infection and lack of Vitamin C had nothing to do with the IPT; it was just bad timing and a combination of weird circumstances. Today I was mad and upset and frustrated with all of it. I was ready to quit IPT. It makes no sense to me to continue to weaken my body just to kill cancer cells. A strong body, fortified with what it needs and detoxed of what it doesn't need will stop making cancer, as I see it. Feeling lousy, weak, sickly, mad and frustrated doesn't help to stop cancer; it all probably adds to it.
So, today we agreed to cut back to once weekly IPT treatments without the latest harsh chemo drug. It was on board for 8 treatments which is a standard IPT course. We are going to wait a month or so to get another CT scan (don't need the radiation too often, ya know). And the tumor marker blood tests are showing decrease so that is good. The IPT treatments are working, we know that.
I'm tired of focusing on cancer. I talk about it too much lately. There was a time I wouldn't say the word, hah! Now it seems to be in every conversation. Sometimes it comes in handy and I've learned to play the cancer card when appropriate, like when we went to Virginia, it helped to make that happen.
But I do not think about dying, never have. I don't think that is what this is about. This cancer journey for me is about learning to listen to my own knowing and staying centered in that knowing. The rest of it is just information to be considered and kept or thrown out.
It's also about love and feeling the care and compassion of those around me and being astounded daily at the power of love to meet the challenges of this crazy cancer bump in the road. The power of love to push through and around and up and down and over that bump in the road. And it's just a bump.
All that said, here are a few fun pix of me at age 16 back in Richmond, Va taken by my old friend John Moser. He gave them to me when we were there at Christmas and they make me smile every time I look at them. Enjoy!
And thanks for all the love! Back at ya!
I've been crashed since January with no energy to post a blog entry, hence folks are wondering what's been happening with me. My last postings were so upbeat and positive; I was waiting for the same energy to return before I posted again. But I've found that that energy doesn't stay here long enough for me to get focused enough to write, so I'm posting anyway, upbeat or not.
I had great energy through December and traveled back to Richmond for a week at Christmas with Mike. We stayed with my sister Janet's family (Janet Beck Thoroman and Jim, Carrie and Anna Thoroman) and then with Jean and Tom Washburn (my stepmother and her husband). I had phenomenal energy the whole time and kept up a steady pace of visiting with family and reconnecting with old friends. It was the best trip I've had in a very long time.
Then after a few days home I crashed and have not recovered since. I'm accustomed to overdoing it at Christmas and then being low in January and gradually regaining my strength, but this was worse. Then I started spiking fevers. (the fevers were kinda fun at first because my body has not been able to make a fever for years; I've always had very low temperatures.) The blood cultures showed a bacterial infection. My IPT doc said it was something she'd seen several times before in patients with PICC lines and it was not serious and we could address it gently. The conventional medical folks at the infusion center where I get my Vitamin C infusions were all in a panic and said I was septic and demanded I go to the ER, get admitted to the hospital and get on high dose IV antibiotics. When I refused their orders, I was dismissed. (I'm such a bad patient.)
So from the beginning of February I was without my three times a week 125 grams of Vitamin C infusions. And I had a blood infection, probably in my PICC line. And I was weak and lethargic. Chronic fatigue syndrome revisited. And I started a new chemo drug combo with my IPT. The last CT scan had shown the tumors and lymph nodes were stable. We'd done the genetic testing to determine what chemo drugs were best suited for my cancer and so we changed drugs to get better results.
The new drugs were hard on me, especially one. My blood counts decreased gradually and I got weaker and weaker and I was still having fevers. We tried several natural treatments for the bacterial infection but the cultures kept coming back positive. So we did oral antibiotics, still positive blood culture. Then a course of mild IV antibiotics, still positive culture. In the meantime, I'm feeling really lousy from the chemo drugs (IPT only uses a fraction of the standard chemo dose and most people tolerate it well but I am a sensitive weenie with long history of chronic fatigue syndrome and an already weak immune system so I'm not like most people.)
After 9 treatments with the new chemo drugs we got a CT scan that showed definite shrinkage. But by then I was so weak I begged to stop the harshest one so we switched to another one that had shown high sensitivity to my cancer on the genetic test. By then I was doing home infusions of a more powerful antibiotic to wipe out the blood infection. And yes, all this made me feel even more weak and drained. But I could have felt worse...My IPT doc had been giving me high nutrient infusions with lots of vitamins, minerals, antioxidants, amino acids and lots more good stuff to boost me and keep me strong and to balance out the harshness of the chemo and the antibiotics. She works hard to figure out what is going on with me and tries to tailor the treatments to address my weaknesses. I'm quite the complicated case for her and she sticks right with me through it all, never giving up and always problem solving and seeing what works and what doesn't work. Like iron infusions, Yay! they helped alot.
So presently, I finally got back into the infusion center on April 19th after getting a negative blood culture. I'm getting 50 grams of Vitamin C three times a week and working back up to the high dose gradually. The newest chemo drug has turned out to be harder on me than the last one and I've lost some hair, I've gotten very very sensitive to chemicals, and I react to just about everything in the environment. I'm wearing a mask a lot when I am around people or outside because I get sick from synthetic fragrances, exhaust fumes, and now I think I've developed hay fever. I've been sick for a week with what I thought was a cold but it may just be seasonal allergies. All I know is I've been running a low grade fever at times, I'm runny and stuffy, I'm sleeping all day, and I feel like shit.
Back to today, it was an ordeal. I'm tired of feeling tired. I was doing fine on just the Vitamin C infusions and they were strengthening me. The IPT was tolerable until I got the blood infection and the Vitamin C infusions were stopped. The infection and lack of Vitamin C had nothing to do with the IPT; it was just bad timing and a combination of weird circumstances. Today I was mad and upset and frustrated with all of it. I was ready to quit IPT. It makes no sense to me to continue to weaken my body just to kill cancer cells. A strong body, fortified with what it needs and detoxed of what it doesn't need will stop making cancer, as I see it. Feeling lousy, weak, sickly, mad and frustrated doesn't help to stop cancer; it all probably adds to it.
So, today we agreed to cut back to once weekly IPT treatments without the latest harsh chemo drug. It was on board for 8 treatments which is a standard IPT course. We are going to wait a month or so to get another CT scan (don't need the radiation too often, ya know). And the tumor marker blood tests are showing decrease so that is good. The IPT treatments are working, we know that.
I'm tired of focusing on cancer. I talk about it too much lately. There was a time I wouldn't say the word, hah! Now it seems to be in every conversation. Sometimes it comes in handy and I've learned to play the cancer card when appropriate, like when we went to Virginia, it helped to make that happen.
But I do not think about dying, never have. I don't think that is what this is about. This cancer journey for me is about learning to listen to my own knowing and staying centered in that knowing. The rest of it is just information to be considered and kept or thrown out.
It's also about love and feeling the care and compassion of those around me and being astounded daily at the power of love to meet the challenges of this crazy cancer bump in the road. The power of love to push through and around and up and down and over that bump in the road. And it's just a bump.
All that said, here are a few fun pix of me at age 16 back in Richmond, Va taken by my old friend John Moser. He gave them to me when we were there at Christmas and they make me smile every time I look at them. Enjoy!
And thanks for all the love! Back at ya!
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