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. 

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.