As I pulled into our driveway after work last night, what do I see but Mary through the kitchen window buzzing around. When I came in, she had set our places, had the potato baking, was prepping the carrots and was that a great scene or what? At that point I asked, "Are you ok or are you pushing it?" She said she was pushing it so I sent her to sit and I finished the dinner preparations.
How can I explain how great if felt to see that little thing--Mary in the kitchen window at night buzzing and prepping dinner like it was one year ago before this all started! Once we get this back pain under control, maybe, just maybe, we can be hopeful that her energy returns, stamina rebuilds and she becomes that wonderfully active person we all know and love.
We did get to the jeweler today to see the platinum formed into Mary's YAHT neck piece. This week he'll solder the individual pieces together and select a chain. Mary and Ken, the jeweler, decided that fewer diamonds were better than many diamonds...I could hear my father's voice again, "Diamonds, diamonds, isn't platinum expensive enough. And, what is wrong with silver?'' Again, I managed to keep my mouth shut.
Mary's son Daniel called today and he sort of set up a conference call with his girlfriend, Kamie. He added fuel to the fire saying the YAHT item needed more and bigger diamonds. Fortunately, Mary isn't a big bling kinda gal so she is toning it down nicely. Daniel, on the other hand, simply wanted to impact my wallet! I'll be communicating separately with Kamie about her expectations from his pocket!
Thursday morning and Friday morning, Mary's pain got bad again so she had two doses of the liquid morphine each morning--one dose long before my alarm clock sounded, the other about an hour after her regular MSContin dose. A bit disappointing after not having breakthrough pain on Tues and Wed. We called the Pain Medicine Ace we met last Friday and she was glad to hear she made it Tues and Wed with no liquid morphine and not terribly happy about Thurs and Fri. Anyway, she authorized upping her MSContin dose by 50% for the two daytime doses and by 100% for the late night dose. That started yesterday afternoon and definitely worked well. We also removed her fentanyl patch about lunchtime today during Mary's shower and forgot to replace it. No difference in her pain behavior so we may not replace it at all. This is something the Pain Ace suggested anyway and it looks like a good idea.
This has been a great week. Sometimes, weeks are just like that. From the no charge replacement of the milk frother to the Oncologist kissing Mary goodbye and pronouncing her cancer free, it has been an exceptional week. One of my Nikon lenses has been malfunctioning and they won't repair it under the five year warranty unless I produce proof of purchase. Amazingly, I stumbled into the long missing receipt this afternoon! The reason I had not found it was that Mary bought it for me so it wasn't in my history of purchases and it was, for some long forgotten reason, tacked to up on the garage wall. Who can say? And, Mary's car has had a slow leak in the left rear tire. This is the third weekend that I was going to fill it when I decided to simply take it to my regular tire shop to have them fix it. When I picked it up, no charge! I bought the tires there and much to my surprised, all tire maintenance is free!
MaryR gave me a ride back to the tire shop today so I could pick up the car. I told her about all the good stuff that seems to be happening. I said with all this positive luck, I should head to a casino and place a bet or two. She suggested I buy a lottery ticket at 7-11. I did--I don't know the answer yet!
Mary's appetite is good, she is eating well and expanding her menu interests. She also said I need to prepare the week's supply of oatmeal cereal and I need to bake some muffins for the week. Excuuusssseeee me! You want me to bake something! You have got to be kidding!
Again I want to thank Ingrid and MaryR for visiting during lunchtime this week. MaryR commented that it was so good to see the difference from a week ago when the narcotics had Mary on the ropes and unable to do just about anything (recall the remote control problem) to this Friday when she was up and in the kitchen helping with preparations for lunch. Thank you!
Sunday, February 28, 2010
Wednesday, February 24, 2010
Progress, definitely progress
What a difference in just one week. Last week, I didn't dare leave Mary alone. This week, she has been alert although taking reasonable naps. Last night, I needed to stay at work until 8PM. Mary fixed her own dinner--Campbell's chicken noodle, but she did fix it. She has been on her own from lunch time until I get home from work with no problem. In fact, today she did some laundry during the day much to my surprise! Mary seems to be fixated on the Olympics. We have TiVo and it records everything NBC broadcasts. These are 5 and 6 hour shows that Mary watches with great interest--especially short track, half-pipe, figure skating, ice dancing and several others. It is nice to see her paying attention. She is also following American Idol so multitasking is the order of the day!
No liquid morphine for two days now. The MSContin is doing a great job!
Ingrid or I have been at the house for lunch because Mary likes the company. Ingrid is coming on Thursday and MaryR is penciled in for Friday. Lunch is straightforward because Mary is fully alert and has a pretty good appetite. Ingrid brought a German pretzel from the German Bakery in Mountain View near where she lives. Tonight, I cooked chicken breast, asparagus and potatoes for dinner and Mary ate a very healthy portion. The leftover chicken breast will be lunch for Mary and Ingrid tomorrow.
Mary took a call from Stanford today in preparation for the procedure on Wednesday. They said we need to be there at 6AM for a 7:30 AM procedure and Mary should be in recovery 45 minutes later and ready to go home by 9AM. Do we look like we fell off the turnip truck yesterday? We know what hospital time is, give me a break. And, Mary does not snap out of anesthesia quickly so I figure it will be noon before we can seriously head home. I just hope the procedure really does something!
Finally, I want to thank everyone for their email responses to the incredibly great news about Mary's cancer. Your good wishes and celebratory feelings are wonderful. Thank You.
And, we all know that cancer is a tenacious beast. The fact that Mary won round #1 against huge odds does not preclude a nasty round #2. Let's just hope and pray that it never happens.
No liquid morphine for two days now. The MSContin is doing a great job!
Ingrid or I have been at the house for lunch because Mary likes the company. Ingrid is coming on Thursday and MaryR is penciled in for Friday. Lunch is straightforward because Mary is fully alert and has a pretty good appetite. Ingrid brought a German pretzel from the German Bakery in Mountain View near where she lives. Tonight, I cooked chicken breast, asparagus and potatoes for dinner and Mary ate a very healthy portion. The leftover chicken breast will be lunch for Mary and Ingrid tomorrow.
Mary took a call from Stanford today in preparation for the procedure on Wednesday. They said we need to be there at 6AM for a 7:30 AM procedure and Mary should be in recovery 45 minutes later and ready to go home by 9AM. Do we look like we fell off the turnip truck yesterday? We know what hospital time is, give me a break. And, Mary does not snap out of anesthesia quickly so I figure it will be noon before we can seriously head home. I just hope the procedure really does something!
Finally, I want to thank everyone for their email responses to the incredibly great news about Mary's cancer. Your good wishes and celebratory feelings are wonderful. Thank You.
And, we all know that cancer is a tenacious beast. The fact that Mary won round #1 against huge odds does not preclude a nasty round #2. Let's just hope and pray that it never happens.
Monday, February 22, 2010
He kissed her goodbye!
We spent quite a bit of time with the Physicians Assistant, Anne Johnson. Anne's career included 15 years in pain management before joining the Cancer Center. Anne has been a reference for the staff as we tried to find the solution to Mary's narcotic fog. Anne is the one who unlocked the fog by switching her to MSContin from fentanyl at the end of last week, thank you Anne!
Interestingly, when the good doctor arrived, he arrived with Anne. He then gave Anne credit by saying, "Anne seems to have solved the problem that neither Dr. Visser or I could solve."
Dr. Fisher then went on to confirm Mary was feeling better, observed she was vastly improved from only last Friday when he dropped in on Dr. Visser's appointment and then told us that Mary should start engaging with her primary care physician again. The reason? Based on all the recent evidence, and that the pain/narcotics are apparently under control, Mary is cancer free and needs to get on with life. At that point he gave Mary a big hug and I think I saw a peck on the cheek too!
I stated with a gleeful tone in my voice and a twinkle in my eye, "Hey Mary, the Doc is kissing you goodbye! He is blowing you off!" The Doc's response is "Doing this with a patient is such a treat given that I am an Oncologist." Oh, yeah.
The bottom line is magnificent! Mary is cancer free! Hallelujah!
Some more information. Anne, the former pain PA, said that the pain docs's report diagnosed Mary with upper back arthritis. And, the procedure set for the 3rd will tell them what they are dealing with. She tossed terms around like "facet joint arthropathy" which does show up on google as a real thing. Anne also commented that the various images showed the extensive lower back arthritis that Mary had been experiencing before all this cancer stuff started.
Anne also reviewed all of Mary's meds and we are quitting some of the marginal drugs, cutting back on others, increasing yet others and focusing on the drugs that are doing some good. Mary was very glad to hear that. She has been taking: 4 doses of Zofran a day, now its three: 800mg of Celebrex has become 200mg: The two daily diuretics are now zero: The "make the tummy work better because of narcotics" drugs have been increased slightly.
Best of all, her 8 to 11 doses a day of liquid morphine that she was taking as needed for pain are now down to to two based on the past 72 hours. Another Hallelujah!
Mary has asked for sirloin steak for dinner with potatoes and asparagus. No wine because of the narcotics but wow, talk about an appetite coming back! I may open a bottle if it doesn't cause her to grab a bat and do an upside the head thingy on me!
I can tell you the past 3 days have been fantastic as I watch Mary regain her faculties. She is up and moving around, reading the paper, talking to relatives and generally being the Mary we all know and love. She is weak and thin, but she is clearly on a path to regain her strength and some of her weight.
The odds? What odds? We don't care 'bout no stinking odds! For this round, she has beaten cholangiocarcinoma--a cancer than wins the first round 97% of the time!
A self proclaimed 85%
That she then reduced to 80% and a few minutes later after she had gotten out of bed and joined me in the kitchen was adjusted to 60%. Hey, that is a huge improvement from the 1% days she has been having for the last month or so.
For breakfast, instead of the oatmeal which is the only thing she has been able to keep down for four weeks, she ordered a fried egg, over easy with toast, honey and tea. She ate it all, pronounced she was as full as full could be AND kept it all down!
Lunch was a muffin Lara left (frozen and I defrosted).
Dinner was Italian herb chicken from Lunardi's, fresh Acme bread, beans and potatoes from Farmers' Market. Mary ate as close to a full adult portion as I have seen from her since Christmas! In addition, Mary came into the kitchen and helped me plate the food when it was all prepared and ready to go. I expected thunderbolts from the sky to match my shock of having her in the kitchen and helping!
The weather here was rainy, cold (for us, 59 degrees at noon) and generally miserable. Mary decided she did not want to go out. But, she was active in spurts all day, insisted on a shower right after breakfast, loaded some clothes into the washer, read the NY Times, watched hours and hours of Olympics -- who invented 'ski cross', what a wild event. And generally had a damned good day. What an unreal change from just two days ago!
I did go out in the rain to Farmers' Market to get the first growth asparagus from Soso, our veggie lady. She had them last week too and although I prepared them twice for Mary, she only ate them one night and limited herself to three stalks--I sacrificed and ate the rest. Soso saves us a bunch each week and I could not miss picking them up. Ah, yes, for you non-Californians, locally grown, first growth asparagus in Feb is another pleasure we enjoy while waiting for the "Big One."
Our fruit lady, Kalayada (click here and here), is a retired ICU nurse so she is very interested in the treatments that Mary is getting. When I told her that Mary was feeling so much better as she reduced the dose from the fentanyl patch and started MSContin pills, she reacted, "They are exactly the same!"
My response, "Well, they may be the same but Mary is clearly doing a million percent better as we drop the fentanyl patch and put her on MSContin."
Kalayada thought about it for a minute and said, "OK, the change in form can create that kind of effect, but it generally last for about two weeks and then its the same as before."
Clearly, I was disappointed to hear that (and we don't know if it will happen to Mary) but then I realized, "Hey, that might be ok, she has the Medial branch nerve block in 10 days or so and, with luck, that will knock the pain down even more and she won't need the narcotics!"
Tomorrow we see Dr. Fisher again. Given Mary's stunning change, we plan on focusing on the medicines she is on. We confirmed the two diuretics with the surgeon on Friday and we want an assessment of the collection of meds she has been prescribed by the oncology team. My guess is he will be as shocked as I am given the change from Friday.
On a totally different note, I walked into Sur La Table to buy a replacement for our milk frothing device (Nespresso Aeroccini) which died yesterday. We use it for my lattes and for Mary's night time warm milk so it had to be replaced right away. Amazingly enough, when I answered the question about where we bought it with "We bought it here" I got a stunning answer.
"Oh sir, we replace that no charge if you purchased it here." I was sure she was wrong because the manufacturer's warranty is six months. She directed me to the checkout stand so they could look up the purchase records. And, yes, we bought it Dec 2008. And yes, I get a no charge replacement under the Sur La Table warranty! I had to return to the store with the old dead unit, they took it and handed me a brand new Aeroccini which, of course, is now a new and improved model from our Dec 2008 purchase. I always wondered why they recorded our name and address with major purchases and now I know!
For breakfast, instead of the oatmeal which is the only thing she has been able to keep down for four weeks, she ordered a fried egg, over easy with toast, honey and tea. She ate it all, pronounced she was as full as full could be AND kept it all down!
Lunch was a muffin Lara left (frozen and I defrosted).
Dinner was Italian herb chicken from Lunardi's, fresh Acme bread, beans and potatoes from Farmers' Market. Mary ate as close to a full adult portion as I have seen from her since Christmas! In addition, Mary came into the kitchen and helped me plate the food when it was all prepared and ready to go. I expected thunderbolts from the sky to match my shock of having her in the kitchen and helping!
The weather here was rainy, cold (for us, 59 degrees at noon) and generally miserable. Mary decided she did not want to go out. But, she was active in spurts all day, insisted on a shower right after breakfast, loaded some clothes into the washer, read the NY Times, watched hours and hours of Olympics -- who invented 'ski cross', what a wild event. And generally had a damned good day. What an unreal change from just two days ago!
I did go out in the rain to Farmers' Market to get the first growth asparagus from Soso, our veggie lady. She had them last week too and although I prepared them twice for Mary, she only ate them one night and limited herself to three stalks--I sacrificed and ate the rest. Soso saves us a bunch each week and I could not miss picking them up. Ah, yes, for you non-Californians, locally grown, first growth asparagus in Feb is another pleasure we enjoy while waiting for the "Big One."
Our fruit lady, Kalayada (click here and here), is a retired ICU nurse so she is very interested in the treatments that Mary is getting. When I told her that Mary was feeling so much better as she reduced the dose from the fentanyl patch and started MSContin pills, she reacted, "They are exactly the same!"
My response, "Well, they may be the same but Mary is clearly doing a million percent better as we drop the fentanyl patch and put her on MSContin."
Kalayada thought about it for a minute and said, "OK, the change in form can create that kind of effect, but it generally last for about two weeks and then its the same as before."
Clearly, I was disappointed to hear that (and we don't know if it will happen to Mary) but then I realized, "Hey, that might be ok, she has the Medial branch nerve block in 10 days or so and, with luck, that will knock the pain down even more and she won't need the narcotics!"
Tomorrow we see Dr. Fisher again. Given Mary's stunning change, we plan on focusing on the medicines she is on. We confirmed the two diuretics with the surgeon on Friday and we want an assessment of the collection of meds she has been prescribed by the oncology team. My guess is he will be as shocked as I am given the change from Friday.
On a totally different note, I walked into Sur La Table to buy a replacement for our milk frothing device (Nespresso Aeroccini) which died yesterday. We use it for my lattes and for Mary's night time warm milk so it had to be replaced right away. Amazingly enough, when I answered the question about where we bought it with "We bought it here" I got a stunning answer.
"Oh sir, we replace that no charge if you purchased it here." I was sure she was wrong because the manufacturer's warranty is six months. She directed me to the checkout stand so they could look up the purchase records. And, yes, we bought it Dec 2008. And yes, I get a no charge replacement under the Sur La Table warranty! I had to return to the store with the old dead unit, they took it and handed me a brand new Aeroccini which, of course, is now a new and improved model from our Dec 2008 purchase. I always wondered why they recorded our name and address with major purchases and now I know!
Saturday, February 20, 2010
What a difference a day makes!
We dropped Mary's fentanyl trans-dermal patch to half size at 12 micrograms/hr on Thursday evening. Also on Thursday, we started the MSContin at a 45 mg per day rate. The plan was/is to increase the MSContin to make up for the reduction of the patch, going slow in both directions so we don't cause withdrawal symptoms nor overdose Mary on narcotics. And, for breakthrough pain, we'd give her oral doses of liquid MS.
As I wrote yesterday, Mary went to Stanford yesterday and visited both doctors. What I didn't write was that she was having a pretty good day so I left her unattended from 2:30PM to 6:00PM as I went to work. She called at 5:30 and asked that I come home for a liquid morphine dose. Otherwise, she took care of herself. And last night she was aware and awake but not interested in eating even though I prepared one of my culinary masterpieces. (Definition of a Pat masterpiece: 1) It was a hot meal 2) It wasn't dessicated and 3) there were no violations of bacterial contamination protocol. That is a masterpiece lately.)
Overall, she was alert last night and generally I felt positive.
Today was totally different. We got up together (actually, she woke me up), ate breakfast, showered and headed to our jeweler (Ken Gerhkins) to look at the work ups on Mary's necklace. (No laughing that the first thing Mary did when feeling good was go to a jewelry store!) When Dr. Visser told Mary about her cholangiocarcinoma last year and the expectation from the liver surgery, he said "Because you are young, active, healthy and thin, I think you have excellent chances to survive this successfully." Mary reacted stronger to his calling her "young, active, health and thin" than she did to the pronouncement of cancer, I think. Anyway, Mary said she wanted a custom neck piece made with the initials YHAT for her one year anniversary.
Ken is an artist and showed us several different mockups for Mary's piece. Once we settled on one, he started to modify it as we sat there. When he started to place many diamonds on the mock up, I heard my father's penny pinching voice but I managed to wrestle it to the ground without saying a word! We'll see the metal in a few weeks and there is a pretty good chance it will be ready for March 22nd.
As for the rest of the day, Mary was alert, interactive and generally in a state of awareness and consciousness we haven't seen for weeks and weeks! We talked to her sister and brother in law and to her son Daniel and Mary was alert and positive throughout the whole thing. Heck, she even ate lunch at the kitchen round, something she hasn't done since Christmas! The kitchen round is bar height and we have very high chairs so I was amazed that she took her place there as I fixed sandwiches...oh yeah, she hasn't asked for or had a sandwich for over a month...
Her daily breakthrough of liquid morphine has ranged from 120mg to 200mg on top of the 25 micrograms per hour of fentanyl. Today she had 40mg of liquid morphine, 90 mg of MSContin and a 12 microgram fentanyl patch. That is the least she has had since we acquired the liquid morphine. This may be a premature judgment, but it is starting to look like the fentanyl has been the bad actor here--not enough pain protection and some pretty strong side effects.
A couple days ago I wrote about Mary's different phases in the narcotics cloud with the least being a phase called "light fog". Well, if that was light fog, she is now in a light haze in full sunlight. During the phone call with Reenie, Mary made a couple of quick comments that caused Reenie to say, "Hey! My sister is back!" Mary's coordination is almost fully recovered, her jerky hand motions are gone, just about everything is much, much closer to normal. Whew!
Although she didn't go out after the trip to Gerhkins, she did click on the Olympics and watched several events that were of interest to her. She was much different today in that she clearly was concentrating, remembering names and not one moment of dozing off--heck, I was the one nodding off and forgetting which event was on the TV (BTW, don't you just love TiVo for watching sporting events? When they run highlights in slow motion, I love to set TiVo in slow motion so you get double slow mo and can really see what is happening in some of the high speed stuff.)
By the end of the day, Mary asked me to take her through all the medications in the med's box so she can take care of herself. Again, she hasn't done that for weeks and weeks...
We shall see what Sunday brings, but Saturday was an absolute, out of the park grand slam kind of day!
As I wrote yesterday, Mary went to Stanford yesterday and visited both doctors. What I didn't write was that she was having a pretty good day so I left her unattended from 2:30PM to 6:00PM as I went to work. She called at 5:30 and asked that I come home for a liquid morphine dose. Otherwise, she took care of herself. And last night she was aware and awake but not interested in eating even though I prepared one of my culinary masterpieces. (Definition of a Pat masterpiece: 1) It was a hot meal 2) It wasn't dessicated and 3) there were no violations of bacterial contamination protocol. That is a masterpiece lately.)
Overall, she was alert last night and generally I felt positive.
Today was totally different. We got up together (actually, she woke me up), ate breakfast, showered and headed to our jeweler (Ken Gerhkins) to look at the work ups on Mary's necklace. (No laughing that the first thing Mary did when feeling good was go to a jewelry store!) When Dr. Visser told Mary about her cholangiocarcinoma last year and the expectation from the liver surgery, he said "Because you are young, active, healthy and thin, I think you have excellent chances to survive this successfully." Mary reacted stronger to his calling her "young, active, health and thin" than she did to the pronouncement of cancer, I think. Anyway, Mary said she wanted a custom neck piece made with the initials YHAT for her one year anniversary.
Ken is an artist and showed us several different mockups for Mary's piece. Once we settled on one, he started to modify it as we sat there. When he started to place many diamonds on the mock up, I heard my father's penny pinching voice but I managed to wrestle it to the ground without saying a word! We'll see the metal in a few weeks and there is a pretty good chance it will be ready for March 22nd.
As for the rest of the day, Mary was alert, interactive and generally in a state of awareness and consciousness we haven't seen for weeks and weeks! We talked to her sister and brother in law and to her son Daniel and Mary was alert and positive throughout the whole thing. Heck, she even ate lunch at the kitchen round, something she hasn't done since Christmas! The kitchen round is bar height and we have very high chairs so I was amazed that she took her place there as I fixed sandwiches...oh yeah, she hasn't asked for or had a sandwich for over a month...
Her daily breakthrough of liquid morphine has ranged from 120mg to 200mg on top of the 25 micrograms per hour of fentanyl. Today she had 40mg of liquid morphine, 90 mg of MSContin and a 12 microgram fentanyl patch. That is the least she has had since we acquired the liquid morphine. This may be a premature judgment, but it is starting to look like the fentanyl has been the bad actor here--not enough pain protection and some pretty strong side effects.
A couple days ago I wrote about Mary's different phases in the narcotics cloud with the least being a phase called "light fog". Well, if that was light fog, she is now in a light haze in full sunlight. During the phone call with Reenie, Mary made a couple of quick comments that caused Reenie to say, "Hey! My sister is back!" Mary's coordination is almost fully recovered, her jerky hand motions are gone, just about everything is much, much closer to normal. Whew!
Although she didn't go out after the trip to Gerhkins, she did click on the Olympics and watched several events that were of interest to her. She was much different today in that she clearly was concentrating, remembering names and not one moment of dozing off--heck, I was the one nodding off and forgetting which event was on the TV (BTW, don't you just love TiVo for watching sporting events? When they run highlights in slow motion, I love to set TiVo in slow motion so you get double slow mo and can really see what is happening in some of the high speed stuff.)
By the end of the day, Mary asked me to take her through all the medications in the med's box so she can take care of herself. Again, she hasn't done that for weeks and weeks...
We shall see what Sunday brings, but Saturday was an absolute, out of the park grand slam kind of day!
Good News is Bad News
Yes, we went to Stanford today for a regular follow up with the surgeon, the good Dr. Visser. On the other hand, we were loaded for bear to get something going for the back pain or the narcotic fog.
We were in the examination room and the singleton rambling resident came in for the standard preliminary questions. You know you have been spending too much time with residents when you know the answers to the questions before he asks them. And, then you inform him of what he forgot to ask...
Properly adjusted, the singleton disappears. A moment later, a figure appears in the doorway and it isn't the expected Dr. Visser. Instead, its our Oncologist, Dr. Fisher, whom we are scheduled to see on Monday. He apologies for crashing the party, but he saw that Mary was in and he wanted to see her given everything going on with pain. A moment later, Dr. Visser shows up and we can play a hand of bridge!
The good news is that every test run since last October (multiple MRI, multiple CT Scans, the PET/CT combination scan, the bone scan, the x-ray) all point to the same conclusion. There is NO cancer present in Mary's abdomen and spine and from her armpits to her pelvic bone she is clean as a whistle. They even explained they had carefully done "then and now" analysis to seek differences. Why? Cancer is fast growing (out of control) cells so comparing November images to February images should quickly identify items that have grown larger during the four months. Again, more good news--absolutely nothing in any of her images shows growth from then to now. And the blood test, including good old CA-19-9 also indicate no cancer. As an aside, all of these tests have confirmed that Mary's liver is absolutely A-OK, fully functional, good as new. Obviously, this is very and I mean very good news. Back to our statistics, out of the 3,000 cases of cholangiocarcinoma diagnosed in the USA each year, about 100 patients are alive one year later. March 22, 2008 was the day Mary presented the symptoms. It is pretty clear Mary will make her first anniversary and beyond.
But this good news is also the bad news. The source of the pain remains a mystery. It is amazing to see Dr. Visser who last year was so assuring while discussing the risks and odds of removing 80% of Mary's liver now sitting in front of us with a flummoxed look on his face admitting they really could not pinpoint any cause for her pain. And so the Oncology team had no plan and no idea for a plan. And Dr. Fisher contributing to this part of the discussion with "If we could find something, then we could do something whether it be surgery or radiation therapy or whatever."
We discussed the recommendation of the pain specialist and the scheduled Medial Branch Nerve Block procedure on March 3. They both agreed that was the most logical next step and were sorry Mary had to wait so long for the procedure.
I asked about neurontin for pain as suggested by Dr. Coleman, the pain specialist. Dr. Fisher said that it could be added to Mary's pain meds because it does not interact with narcotics. After a bit more give and take, Dr. Fisher left the room and Dr. Visser stayed a bit longer.
Dr. V further explained the "then and now" analysis on the images and his frustration along with Dr. Fisher's frustration with Mary's condition. It was very clear to him that there are two really significant problems. One is the pain. The other is the effect of the narcotics on Mary. He said that when he walked into the examination room, he saw that Mary was not nearly as alert and healthy looking as she has been on previous follow up visits and clearly the pain killers are the source of that condition.
I asked him about initiating Neurontin. He explained that neurontin is a bit of a wild card in its effect on the body. It has to be prescribed and then carefully monitored because too little causes one nasty condition while too much causes a totally different really nasty condition--and, each person reacts differently so its very "touchy" to prescribe the correct dose. A very nice and thorough way to explain that he wasn't going to write that script!
Monday's appointment with Dr. Fisher will focus on how we can attempt the recommendation from the pain specialist for using the neurontin.
As for this week's saga of pain management, after I made the decision to stop the Oxy and go back to liquid morphine sulfate on Thursday morning, they recommended Mary switch from the fentanyl trans-dermal patch to MSContin, a morphine based long-term pain relief medication for her baseline pain. We started that last night and we should complete the transition by late Sunday and we'll see if that helps Mary a bit more than where we are now.
All in all, Mary had a pretty good day today. She ranged from totally clear to woozy and droopy but didn't go as far as "30 minutes after sunset" so maybe we are on the right track.
Finally, I must profusely thank both MaryR and Ingrid for their assistance this week. Until we changed Mary's meds to MS Contin, I felt I could not leave Mary alone and both Ingrid and MaryR jumped in to help so I could head off to key events at work. Thank you, thank you.
And, it looks like Reenie will come back for a visit spanning my cataract surgery so that can go forward. They require I have adult supervision for 36 hours or so Reenie gets to play adult! My surgery is March 17...St. Pat's Day!
We were in the examination room and the singleton rambling resident came in for the standard preliminary questions. You know you have been spending too much time with residents when you know the answers to the questions before he asks them. And, then you inform him of what he forgot to ask...
Properly adjusted, the singleton disappears. A moment later, a figure appears in the doorway and it isn't the expected Dr. Visser. Instead, its our Oncologist, Dr. Fisher, whom we are scheduled to see on Monday. He apologies for crashing the party, but he saw that Mary was in and he wanted to see her given everything going on with pain. A moment later, Dr. Visser shows up and we can play a hand of bridge!
The good news is that every test run since last October (multiple MRI, multiple CT Scans, the PET/CT combination scan, the bone scan, the x-ray) all point to the same conclusion. There is NO cancer present in Mary's abdomen and spine and from her armpits to her pelvic bone she is clean as a whistle. They even explained they had carefully done "then and now" analysis to seek differences. Why? Cancer is fast growing (out of control) cells so comparing November images to February images should quickly identify items that have grown larger during the four months. Again, more good news--absolutely nothing in any of her images shows growth from then to now. And the blood test, including good old CA-19-9 also indicate no cancer. As an aside, all of these tests have confirmed that Mary's liver is absolutely A-OK, fully functional, good as new. Obviously, this is very and I mean very good news. Back to our statistics, out of the 3,000 cases of cholangiocarcinoma diagnosed in the USA each year, about 100 patients are alive one year later. March 22, 2008 was the day Mary presented the symptoms. It is pretty clear Mary will make her first anniversary and beyond.
But this good news is also the bad news. The source of the pain remains a mystery. It is amazing to see Dr. Visser who last year was so assuring while discussing the risks and odds of removing 80% of Mary's liver now sitting in front of us with a flummoxed look on his face admitting they really could not pinpoint any cause for her pain. And so the Oncology team had no plan and no idea for a plan. And Dr. Fisher contributing to this part of the discussion with "If we could find something, then we could do something whether it be surgery or radiation therapy or whatever."
We discussed the recommendation of the pain specialist and the scheduled Medial Branch Nerve Block procedure on March 3. They both agreed that was the most logical next step and were sorry Mary had to wait so long for the procedure.
I asked about neurontin for pain as suggested by Dr. Coleman, the pain specialist. Dr. Fisher said that it could be added to Mary's pain meds because it does not interact with narcotics. After a bit more give and take, Dr. Fisher left the room and Dr. Visser stayed a bit longer.
Dr. V further explained the "then and now" analysis on the images and his frustration along with Dr. Fisher's frustration with Mary's condition. It was very clear to him that there are two really significant problems. One is the pain. The other is the effect of the narcotics on Mary. He said that when he walked into the examination room, he saw that Mary was not nearly as alert and healthy looking as she has been on previous follow up visits and clearly the pain killers are the source of that condition.
I asked him about initiating Neurontin. He explained that neurontin is a bit of a wild card in its effect on the body. It has to be prescribed and then carefully monitored because too little causes one nasty condition while too much causes a totally different really nasty condition--and, each person reacts differently so its very "touchy" to prescribe the correct dose. A very nice and thorough way to explain that he wasn't going to write that script!
Monday's appointment with Dr. Fisher will focus on how we can attempt the recommendation from the pain specialist for using the neurontin.
As for this week's saga of pain management, after I made the decision to stop the Oxy and go back to liquid morphine sulfate on Thursday morning, they recommended Mary switch from the fentanyl trans-dermal patch to MSContin, a morphine based long-term pain relief medication for her baseline pain. We started that last night and we should complete the transition by late Sunday and we'll see if that helps Mary a bit more than where we are now.
All in all, Mary had a pretty good day today. She ranged from totally clear to woozy and droopy but didn't go as far as "30 minutes after sunset" so maybe we are on the right track.
Finally, I must profusely thank both MaryR and Ingrid for their assistance this week. Until we changed Mary's meds to MS Contin, I felt I could not leave Mary alone and both Ingrid and MaryR jumped in to help so I could head off to key events at work. Thank you, thank you.
And, it looks like Reenie will come back for a visit spanning my cataract surgery so that can go forward. They require I have adult supervision for 36 hours or so Reenie gets to play adult! My surgery is March 17...St. Pat's Day!
Thursday, February 18, 2010
From Oxycodone to Morphine
Oxy didn't last long. Wednesday at noon Mary ate some lunch prepared by Ingrid. The rest of the day was a total wipe out including several rounds of vomiting--that were basically dry heaves after the first episode. Mary had a miserable night and at 6AM I told her she was not taking the next Oxy pill. Rather, if she had pain I would put her back on the liquid morphine. She has had four doses of Morphine today, has eaten some food and held it down and is feeling pretty weak overall but better than yesterday.
Talking to Stanford, we are switching the fentanyl patch to MS Contin. It takes three days for the conversion, slowly increasing the MS Contin will the fentanyl falls away. By Sunday evening, she will be totally on MS Contin instead of fentanyl and she can use the liquid morphine for breakthrough pain. We shall see how this works.
Tomorrow Mary sees her surgeon for a general follow up visit. As Ingrid said tonight, "Make sure you tell him how the oncology folks appear to be screwing up his fine work of the surgery." I will also explore the nerve damage theory from the pain doctor versus the compressed vertebrae theory from the oncology folks. And, the use of narcotics versus neurontin. I am amazed reading web info on the various narcotics and people report virtually no functional impact from taking the same drugs Mary is on. She is, as I have written before, living in a narcotics cloud while other folks can go to work, do regular stuff (shopping, movies, dinners, etc.) and I consider it a victory if I can get Mary to have dinner at the dining room table instead of on a bed tray.
Time for bed. I have a 6AM meeting in the office. Its one of those Asia-Europe-USA video meetings and trying to make it work around the globe can be a challenge. Pajama meetings they tend to be called because someone on the call is in their pj's at home--you can always tell, their video connection 'never' works for some reason.
Ingrid will come over early and help Mary through her morning routine. At that point, either Ingrid or MaryR will deliver Mary to Stanford. My 6AM will finish at 10:30AM and I will connect with Mary at Stanford shortly after that.
Talking to Stanford, we are switching the fentanyl patch to MS Contin. It takes three days for the conversion, slowly increasing the MS Contin will the fentanyl falls away. By Sunday evening, she will be totally on MS Contin instead of fentanyl and she can use the liquid morphine for breakthrough pain. We shall see how this works.
Tomorrow Mary sees her surgeon for a general follow up visit. As Ingrid said tonight, "Make sure you tell him how the oncology folks appear to be screwing up his fine work of the surgery." I will also explore the nerve damage theory from the pain doctor versus the compressed vertebrae theory from the oncology folks. And, the use of narcotics versus neurontin. I am amazed reading web info on the various narcotics and people report virtually no functional impact from taking the same drugs Mary is on. She is, as I have written before, living in a narcotics cloud while other folks can go to work, do regular stuff (shopping, movies, dinners, etc.) and I consider it a victory if I can get Mary to have dinner at the dining room table instead of on a bed tray.
Time for bed. I have a 6AM meeting in the office. Its one of those Asia-Europe-USA video meetings and trying to make it work around the globe can be a challenge. Pajama meetings they tend to be called because someone on the call is in their pj's at home--you can always tell, their video connection 'never' works for some reason.
Ingrid will come over early and help Mary through her morning routine. At that point, either Ingrid or MaryR will deliver Mary to Stanford. My 6AM will finish at 10:30AM and I will connect with Mary at Stanford shortly after that.
Wednesday, February 17, 2010
From Morphine to Oxycodone
Oxy is what we used after surgery and prior to radiation therapy last year. It wasn't much fun then and it isn't any better now.
Different than morphine, Mary's little gray cells are not as wonked out. But, her urge to sleep is overpowering. She is taking the Oxy at noon, 6PM, midnight and 6AM. We try to get food into her shortly after taking the pain medication. After that, she sleeps for a few hours followed by waking up for the last hour or two when she is very grim from the pain. And, when the pain is bad, she will not eat.
Last summer they suggested we add benedryl to the mix to help with managing the Oxycodone. I gave Mary two benedryl tonight after the 6pm dose of Oxy had no effect on reducing her pain level. Well, Benedryl will put you to sleep all by itself. Mix it with two narcotics and Mary went to dreamland very quickly--because the pain level reduced nicely with the benedryl.
Where are we? Back on the phone in the morning to see if there are any other ideas. And, we do see the surgeon on Friday and the Oncologist on Monday.
Different than morphine, Mary's little gray cells are not as wonked out. But, her urge to sleep is overpowering. She is taking the Oxy at noon, 6PM, midnight and 6AM. We try to get food into her shortly after taking the pain medication. After that, she sleeps for a few hours followed by waking up for the last hour or two when she is very grim from the pain. And, when the pain is bad, she will not eat.
Last summer they suggested we add benedryl to the mix to help with managing the Oxycodone. I gave Mary two benedryl tonight after the 6pm dose of Oxy had no effect on reducing her pain level. Well, Benedryl will put you to sleep all by itself. Mix it with two narcotics and Mary went to dreamland very quickly--because the pain level reduced nicely with the benedryl.
Where are we? Back on the phone in the morning to see if there are any other ideas. And, we do see the surgeon on Friday and the Oncologist on Monday.
A local catastrophy
Just before 8AM this morning, a light plane near Palo Alto's airport struck some high voltage wires. The three people on the plane were killed. No one on the ground at the crash site was killed and they think the pilot may have steered the crashing plane into the empty street rather than into one of the neighborhood houses potentially saving more lives.
The high voltage wires they hit fed the city of Palo Alto--including Stanford. As a result, the cancer center closed today so I couldn't get back to Kelly with feedback about the switch to Oxycodone from Morphine. That will have to wait until morning.
And the message is simple. Mary is feeling pain, differently than before. She used the term "sharper" to compare the feeling on morphine vs Oxy for her back pain. Mary is eating but still small portions. And so far, it has stayed with her.
Ingrid spent the afternoon with Mary. Thanks to Ingrid and even doubly so given today is her birthday!
Tuesday, February 16, 2010
As promised, several calls to and from Stanford
We talked to the Oncologist's nurse assistant, Kelly, who has been taking our calls and working with us for several weeks now so she is familiar with the situation.
As part of the initial call today, Kelly wondered if I should take Mary into the Emergency Room because the pain is so much out of control and Mary is in this narcotics cloud. Frankly, I think part of the reason for even thinking about bringing her in is to gain priority on the Medial Branch Nerve Block procedure. Patients in the hospital have near instantaneous call on resources while outpatients have to wait for their appointments. For those who remember way back at the beginning of this journey in April last year, it took several weeks to see the Stanford specialist who would perform the ERCP and then another week for the outpatient ERCP appointment. Then, 36 hours after the first Stanford ERCP, Mary was in ER due to abdominal pain and "voila!", her second unscheduled and unplanned Stanford ERCP happened within a day in the same facility and same doctor we had waited weeks for previously. (Trivia: Mary had 4 ERCPs last April, two at Good Sam and two at Stanford.)
Anyway, Kelly excused herself and promised to call back, which she did several hours later. I told Mary I thought Kelly was asking the various doctors on Mary's team their opinion on what to do next.
The result of this confab was a change in Mary's painkillers--again. We stopped the morphine which was not terribly effective against the pain anyway and put her in the depths of the narcotics cloud. Instead, she has switched to Oxycodone (aka Roxicodone). Yes, Oxy, our old friend used successfully after surgery last year and we used it (unsuccessfully) for a couple days at the end of January as part of this pain treatment. It worked well after surgery. But, appeared to cause Mary huge gastric distress when we used it recently for this pain.
As part of the initial call today, Kelly wondered if I should take Mary into the Emergency Room because the pain is so much out of control and Mary is in this narcotics cloud. Frankly, I think part of the reason for even thinking about bringing her in is to gain priority on the Medial Branch Nerve Block procedure. Patients in the hospital have near instantaneous call on resources while outpatients have to wait for their appointments. For those who remember way back at the beginning of this journey in April last year, it took several weeks to see the Stanford specialist who would perform the ERCP and then another week for the outpatient ERCP appointment. Then, 36 hours after the first Stanford ERCP, Mary was in ER due to abdominal pain and "voila!", her second unscheduled and unplanned Stanford ERCP happened within a day in the same facility and same doctor we had waited weeks for previously. (Trivia: Mary had 4 ERCPs last April, two at Good Sam and two at Stanford.)
Anyway, Kelly excused herself and promised to call back, which she did several hours later. I told Mary I thought Kelly was asking the various doctors on Mary's team their opinion on what to do next.
The result of this confab was a change in Mary's painkillers--again. We stopped the morphine which was not terribly effective against the pain anyway and put her in the depths of the narcotics cloud. Instead, she has switched to Oxycodone (aka Roxicodone). Yes, Oxy, our old friend used successfully after surgery last year and we used it (unsuccessfully) for a couple days at the end of January as part of this pain treatment. It worked well after surgery. But, appeared to cause Mary huge gastric distress when we used it recently for this pain.
The situation now is that Mary's body is used to being loaded up with narcotics so she may not encounter so much gastric distress--hey, she is taking liquid morphine up to 10 times a day without tossing her food. The theory is that three to five days were needed to get "used to" the additional narcotic (above the fentanyl transdermal patch) in the system. The morphine treatment will provide an "umbrella" to allow a switch from morphine sulfate to Oxycodone without a lot of discomfort. As of the first 8 hours, it appears to be a viable theory.
The Oxycodone routine will be every six hours. The reading I have done on the web says that for breakthrough pain, it is better to keep the patient at a constant dosage of Oxy rather than try and chase the pain when it appears. Frankly, once the pain starts, the painkillers are not terribly effective in minimizing the pain for some relatively long period of time. It works when proactive, it is less than helpful if it is reactive. I now have Mary's iPhone programmed to sound out every six hours for her to take her Oxycodone pill. And, it is also set to sound the alarm 30 minutes prior to the Oxy pill so she can take the stomach settling Zofran pill to help with stomach discomfort from the narcotic. We're going to do this on a firm schedule with the expectation that a regular schedule will be more helpful to her.
Mary went to bed early tonight. I am not surprised, she basically slept for about an hour last night before the pain woke her up. She then got me up to dispense the morphine at 3, 4, 5 and 7AM. Not a very restful night for either of us.
Tomorrow is Maids' day. Ingrid will either take Mary and the dogs out at lunchtime OR Mary will stay in her office (barely used these days so no cleaning required) while the Maids scrub down the rest of the house and Ingrid plays nice with the four-foots. It appears I may have a nearly normal day at work too!
Monday, February 15, 2010
A President's Weekend
We'd like to tell you we flew to Vancouver and watched Apolo Ohno win his 6th Olympic medal or we saw Hannah Kearney take the freestyle skiing gold away from the Canadian, Jennifer Heil, gold medalist from Torino. Or we sat in the stadium to watch Shen and Zhao grab the gold for pairs figure skating. But, no, the best we could do was TiVo a zillion hours of coverage and then patiently watch the events unfold. I try not to look at the day's results because not only is NBC running an "evening summary" program, it starts here in California at 8PM, long after most of the events have completed and medals awarded...and three hours after they show it on the East coast.
The weekend was quiet for us, again. Mary is simply living in a narcotics cloud. There are several phases to the cloud. The "light fog" phase is the closest to Mary being totally normal. During that phase, she can carry on a conversation and is very lucid. It is while she was in the light cloud phase today that she asked me to get some attention on her situation this week even before we get to the scheduled appointments. I should note that closest to being normal is nowhere close to being normal. Her coordination is off, her balance is questionable and she is prone to spilling food or drink easily.
I call the next phase "30 minutes after sunset" because its clear things are getting darker and more difficult for her to navigate. In this phase, she is clearly unable to focus and also unable to recall from her memory. In between doing household choirs, I join her in the bedroom for a few minute break to check up and see if she needs anything. During one of these breaks, TiVo was showing the downhill racing course with the athletes plunging headlong at incredible speeds. She was telling me we were watching cross country skiing--which we had watched earlier in the day. It took several minutes of carefully explaining the difference before she recognized it was downhill and not cross country skiing. Normally, she not only knows the difference, she has memorized both courses and their key features and turns.
Another example, I was working paperwork at the dining room table while Mary was watching the Olympics this afternoon. She walked out to the dining room (risky, but not too bad) to ask me how to get the TiVo controller to make the program go backward and forward. We have had TiVo for six years now and its been the very same controller that entire time. I explained it to her and she said she understood. (For those who don't have TiVo, its left arrow to go back and right arrow to go forward.) This is consistent to an incident that happened when MaryR was here last week. The TiVo-TV combination was not working. They ended up calling me at work and I talked them through it. As MaryR said, it was pretty simple but Mary insisted on calling me to get the proper instructions. And, Mary has solved that very same problem herself many, many times--changing the input on the TV from DVD player to the TiVo DVR.
Mary's final phase is "Listing 30 degrees to port." In this phase, her head droops to her left (aka port) and she is only able to concentrate for a few seconds at a time. Her eyes glaze over or completely close as if she is sleeping. A characteristic is that she will latch onto a topic and it may come back repeatedly for 10 to 15 minutes. In this phase, she will enunciate the topic by suddenly speaking in a loud voice although its typically only the first few words of a sentence before she falls silent. In a moment, she'll start the same sentence again, falling silent at about the same point. She will repeat the first part of the sentence multiple times adding a word or two with each attempt. Once in a while, she will finish the sentence and then apparently come awake for a moment or two before drifting off again. The topics can be anything from an announcer's phrase during an Olympic event to something we discussed during the day.
What is causing this? Well, we still don't know the source of the pain but the source of this behavior is the narcotics. Light fog is the result of the transdermal patch. The other two phases appear as the result of the amount of morphine she takes and she takes morphine when the pain becomes extreme a.k.a, breakthrough pain. Today, the pain broke through starting late afternoon into mid-evening. I gave her the prescribed, allowed doses of morphine but it took multiple doses over several hours before the pain was under control. By then, it was "Listing to Port" time again.
Yup, Stanford is going to hear from me in the morning. This is not living.
One last thing about the blog hijacking. One of the first things I did was change the security procedure on the blog. Now, if someone mails an entry to the blog, it is held until I approve it. And, because the blog address has been changed, the spammer/hijacker is sending his stuff to a non-existent address. Finally, unlike my previous attitude, I have not posted the "send an email to the blog" address and probably will not publish it--although I will send it to you if you ask.
The weekend was quiet for us, again. Mary is simply living in a narcotics cloud. There are several phases to the cloud. The "light fog" phase is the closest to Mary being totally normal. During that phase, she can carry on a conversation and is very lucid. It is while she was in the light cloud phase today that she asked me to get some attention on her situation this week even before we get to the scheduled appointments. I should note that closest to being normal is nowhere close to being normal. Her coordination is off, her balance is questionable and she is prone to spilling food or drink easily.
I call the next phase "30 minutes after sunset" because its clear things are getting darker and more difficult for her to navigate. In this phase, she is clearly unable to focus and also unable to recall from her memory. In between doing household choirs, I join her in the bedroom for a few minute break to check up and see if she needs anything. During one of these breaks, TiVo was showing the downhill racing course with the athletes plunging headlong at incredible speeds. She was telling me we were watching cross country skiing--which we had watched earlier in the day. It took several minutes of carefully explaining the difference before she recognized it was downhill and not cross country skiing. Normally, she not only knows the difference, she has memorized both courses and their key features and turns.
Another example, I was working paperwork at the dining room table while Mary was watching the Olympics this afternoon. She walked out to the dining room (risky, but not too bad) to ask me how to get the TiVo controller to make the program go backward and forward. We have had TiVo for six years now and its been the very same controller that entire time. I explained it to her and she said she understood. (For those who don't have TiVo, its left arrow to go back and right arrow to go forward.) This is consistent to an incident that happened when MaryR was here last week. The TiVo-TV combination was not working. They ended up calling me at work and I talked them through it. As MaryR said, it was pretty simple but Mary insisted on calling me to get the proper instructions. And, Mary has solved that very same problem herself many, many times--changing the input on the TV from DVD player to the TiVo DVR.
Mary's final phase is "Listing 30 degrees to port." In this phase, her head droops to her left (aka port) and she is only able to concentrate for a few seconds at a time. Her eyes glaze over or completely close as if she is sleeping. A characteristic is that she will latch onto a topic and it may come back repeatedly for 10 to 15 minutes. In this phase, she will enunciate the topic by suddenly speaking in a loud voice although its typically only the first few words of a sentence before she falls silent. In a moment, she'll start the same sentence again, falling silent at about the same point. She will repeat the first part of the sentence multiple times adding a word or two with each attempt. Once in a while, she will finish the sentence and then apparently come awake for a moment or two before drifting off again. The topics can be anything from an announcer's phrase during an Olympic event to something we discussed during the day.
What is causing this? Well, we still don't know the source of the pain but the source of this behavior is the narcotics. Light fog is the result of the transdermal patch. The other two phases appear as the result of the amount of morphine she takes and she takes morphine when the pain becomes extreme a.k.a, breakthrough pain. Today, the pain broke through starting late afternoon into mid-evening. I gave her the prescribed, allowed doses of morphine but it took multiple doses over several hours before the pain was under control. By then, it was "Listing to Port" time again.
Yup, Stanford is going to hear from me in the morning. This is not living.
One last thing about the blog hijacking. One of the first things I did was change the security procedure on the blog. Now, if someone mails an entry to the blog, it is held until I approve it. And, because the blog address has been changed, the spammer/hijacker is sending his stuff to a non-existent address. Finally, unlike my previous attitude, I have not posted the "send an email to the blog" address and probably will not publish it--although I will send it to you if you ask.
Saturday, February 13, 2010
Yes, being hijacked is no fun
Whomever hijacked this website to post medicines for sale is not my favorite person!
I have changed the URL to this blog to avoid a repeat of the hijacking. However, I forgot to change the links from http://www.lamey-hughes.com and thanks to Bill for bringing it to my attention. It is all fixed now.
There are some readers who are technically savvy enough to have figured out the URL and created direct links to the blog--links that are no longer active because I changed the URL to block the hijackers. I hope those readers (but not the hijackers) figure out how to locate this blog again.
On to the status. Mary is living in a narcotics cloud and neither she nor I like it. The Oncology folks said last week they did receive the recommendation from the pain doc and they are glad the medial branch nerve block will be done soon (March 3). However, they prefer to delay the switch to the neurontin from the narcotics to time it with the medial branch nerve block. I plan on making some noise about that this week.
When we filled the morphine prescription, they gave us four bottles of morphine. I opened the last one just a few minutes ago. From Jan 28 to today, Mary is has used quite a bit of the stuff. Three bottles is a total of 90 milliliters (90 ml) over 16.5 days. The morphine is diluted in a liquid, 20 milligrams of morphine in one milliliter (ml) of solution. And, we cannot forget that she is also on 800mg of non-narcotic Celebrex a day plus the narcotic fentanyl transdermal patch. We keep a daily log of all her dispensed medications just so we don't lose track.
I cannot express how much we are hoping the pain doctor is right and this procedure will point to the solution to stop this absolutely horrible pain.
What does "living in a narcotics cloud" mean? Mary is pretty much non-functional and cannot take care of herself. The are moments of clarity but generally, she is woozy, droopy and out of it. She cannot fix meals, cannot completely dress herself and as I wrote previously, I will not let her shower alone because she fell two weeks ago while unattended in the shower. She is eating regular food--tonight was roast herb chicken (from Lunardis) that I served with carrots and potato that I fixed. She has been having oatmeal for breakfast every morning. Unfortunately, the volume is small and she continues to lose weight.
A week ago, Mary's daughter Lara came up from Pasadena for the week and that was a life saver. This last week, I imposed upon MaryR and Ingrid for rather substantial chunks of their time to stay with Mary. With Mary's agreement, I am investigating in-home care that would allow me to maintain my employment and give her the care she needs. The difficulty (other than expense) is that the home care employees are not allowed to dispense medicines. And, we have not let Mary do the narcotics by herself--more for safety than anything else. It is very easy to overdose which is the reason we write each dose down and as a double check I use her iPhone timer app to make sure we are waiting the proper time between doses and not giving them too soon.
As I wrote previously, we see her surgeon for a regular follow up the end of this week and the oncologist on Monday. This will give us feedback from the recent MRI and CT Scan although the pain doctor said the MRI was clean, I want to hear that from a cancer specialist if you know what I mean. I also expect we'll have a rather in depth discussion on medication for pain. What is being done now is barely tolerable.
One item about my planned eye surgery. When I saw the eye doc last week, he gave me a new prescription for my left eye's corrective lens. Well, as I left his office with my dilated pupils, I dug out of the glovebox my old pair of "blues brothers" dark prescription glasses that I bought in college in 1967 or so. Amazingly, my left eye vision is absolutely superb with that prescription--virtually the same as the new prescription he just wrote. So I guess my left eye has changed back to some former state. Who can figure this medical stuff out anyway?
å
The Blues Brothers wearing the glasses. My skin isn't that a color, I quit smoking in 1988 and I long ago outgrew my absolutely flat black wool suit from the 60's.
I have changed the URL to this blog to avoid a repeat of the hijacking. However, I forgot to change the links from http://www.lamey-hughes.com and thanks to Bill for bringing it to my attention. It is all fixed now.
There are some readers who are technically savvy enough to have figured out the URL and created direct links to the blog--links that are no longer active because I changed the URL to block the hijackers. I hope those readers (but not the hijackers) figure out how to locate this blog again.
On to the status. Mary is living in a narcotics cloud and neither she nor I like it. The Oncology folks said last week they did receive the recommendation from the pain doc and they are glad the medial branch nerve block will be done soon (March 3). However, they prefer to delay the switch to the neurontin from the narcotics to time it with the medial branch nerve block. I plan on making some noise about that this week.
When we filled the morphine prescription, they gave us four bottles of morphine. I opened the last one just a few minutes ago. From Jan 28 to today, Mary is has used quite a bit of the stuff. Three bottles is a total of 90 milliliters (90 ml) over 16.5 days. The morphine is diluted in a liquid, 20 milligrams of morphine in one milliliter (ml) of solution. And, we cannot forget that she is also on 800mg of non-narcotic Celebrex a day plus the narcotic fentanyl transdermal patch. We keep a daily log of all her dispensed medications just so we don't lose track.
I cannot express how much we are hoping the pain doctor is right and this procedure will point to the solution to stop this absolutely horrible pain.
What does "living in a narcotics cloud" mean? Mary is pretty much non-functional and cannot take care of herself. The are moments of clarity but generally, she is woozy, droopy and out of it. She cannot fix meals, cannot completely dress herself and as I wrote previously, I will not let her shower alone because she fell two weeks ago while unattended in the shower. She is eating regular food--tonight was roast herb chicken (from Lunardis) that I served with carrots and potato that I fixed. She has been having oatmeal for breakfast every morning. Unfortunately, the volume is small and she continues to lose weight.
A week ago, Mary's daughter Lara came up from Pasadena for the week and that was a life saver. This last week, I imposed upon MaryR and Ingrid for rather substantial chunks of their time to stay with Mary. With Mary's agreement, I am investigating in-home care that would allow me to maintain my employment and give her the care she needs. The difficulty (other than expense) is that the home care employees are not allowed to dispense medicines. And, we have not let Mary do the narcotics by herself--more for safety than anything else. It is very easy to overdose which is the reason we write each dose down and as a double check I use her iPhone timer app to make sure we are waiting the proper time between doses and not giving them too soon.
As I wrote previously, we see her surgeon for a regular follow up the end of this week and the oncologist on Monday. This will give us feedback from the recent MRI and CT Scan although the pain doctor said the MRI was clean, I want to hear that from a cancer specialist if you know what I mean. I also expect we'll have a rather in depth discussion on medication for pain. What is being done now is barely tolerable.
One item about my planned eye surgery. When I saw the eye doc last week, he gave me a new prescription for my left eye's corrective lens. Well, as I left his office with my dilated pupils, I dug out of the glovebox my old pair of "blues brothers" dark prescription glasses that I bought in college in 1967 or so. Amazingly, my left eye vision is absolutely superb with that prescription--virtually the same as the new prescription he just wrote. So I guess my left eye has changed back to some former state. Who can figure this medical stuff out anyway?
åThe Blues Brothers wearing the glasses. My skin isn't that a color, I quit smoking in 1988 and I long ago outgrew my absolutely flat black wool suit from the 60's.
Friday, February 12, 2010
Pat and Mary's blog has been spammed!
My apologies, some spam agent got a the blog email address and sent advertisements for software. I'll do some work tonight to block or filter incoming email and comments so it doesn't happen again.
Pat
Thursday, February 11, 2010
Really not much to report
We talked with the Oncology staff on Tuesday and they are not so ready to switch Mary to the neurontin. It turns out that the transistion from narcotics to neurontin is fraught with difficulty including withdrawal symptoms from the narcotics and several neurontin side effects that need to be monitored during the switch over. So, for now we stay on fentanyl and morphine.
The good news is that once you start the morphine, the body tends to adapt to it after 10 to 14 days. And, based on Mary's behavior the past couple of days (#12 & #13), Mary seems to be stabilizing and getting into a routine. There are still plenty of hours of sleep and often times things come out of left field. Just tonight she told me about being in a store and someone had seen or heard my family name and they were from Alabama. Well, after several approaches she finally recalled it happened over a month ago, the someone was the clerk accepting a check she wrote and she still is not sure what store it was in. Considering she hasn't been anywhere other than Stanford or with me and one trip to her hairstylist, we'll check with the hair studio to see if it was real or if its a hallucination.
MaryR has helped a bunch this week, spending several hours in the middle of the day on Monday and also buzzing to the house at the end of the day Tuesday to give Mary her medication. We don't allow Mary to self administer the morphine--too dangerous to lose track. Anyway, I was tied up at work and thank you, MaryR!
Ingrid spent a very long time today here at the house helping Mary so thank you Ingrid! She even managed to show up just as Mary finished her shower so her timing was impeccable.
As I may have noted before, Mary does not shower unattended after falling a week ago Saturday. Fortunately, when we remodeled we built a shower for two so its easy to be with her and she does appreciate the help. Ingrid plans on being her for Mary's lunch tomorrow as I need to be at work.
On Friday, I will take Mary to her CT Scan at Stanford. We won't get results on that until we see the doctor on the following Friday--unless they find something amiss, then we'll get the dreaded "come see us" call.
Oh, and I am scheduled for cataract surgery on March 17. I am crawling out of my skin to get my eye fixed, it is driving me crazy. And, the doctor reaffirmed that my distance vision can be corrected so that I will not need distance glasses after the surgery. HooRay!
The good news is that once you start the morphine, the body tends to adapt to it after 10 to 14 days. And, based on Mary's behavior the past couple of days (#12 & #13), Mary seems to be stabilizing and getting into a routine. There are still plenty of hours of sleep and often times things come out of left field. Just tonight she told me about being in a store and someone had seen or heard my family name and they were from Alabama. Well, after several approaches she finally recalled it happened over a month ago, the someone was the clerk accepting a check she wrote and she still is not sure what store it was in. Considering she hasn't been anywhere other than Stanford or with me and one trip to her hairstylist, we'll check with the hair studio to see if it was real or if its a hallucination.
MaryR has helped a bunch this week, spending several hours in the middle of the day on Monday and also buzzing to the house at the end of the day Tuesday to give Mary her medication. We don't allow Mary to self administer the morphine--too dangerous to lose track. Anyway, I was tied up at work and thank you, MaryR!
Ingrid spent a very long time today here at the house helping Mary so thank you Ingrid! She even managed to show up just as Mary finished her shower so her timing was impeccable.
As I may have noted before, Mary does not shower unattended after falling a week ago Saturday. Fortunately, when we remodeled we built a shower for two so its easy to be with her and she does appreciate the help. Ingrid plans on being her for Mary's lunch tomorrow as I need to be at work.
On Friday, I will take Mary to her CT Scan at Stanford. We won't get results on that until we see the doctor on the following Friday--unless they find something amiss, then we'll get the dreaded "come see us" call.
Oh, and I am scheduled for cataract surgery on March 17. I am crawling out of my skin to get my eye fixed, it is driving me crazy. And, the doctor reaffirmed that my distance vision can be corrected so that I will not need distance glasses after the surgery. HooRay!
Monday, February 8, 2010
Waiting
We are both looking forward to switching to the neurontin from the narcotics. Mary's brother in law, Tom, has been on this stuff for a year because of a cyst in his spine. His side effects were minimal, with a clear head and normal functions except for the "butt stuck in the chair" problem. Neurontin does not make you an invalid, it just makes you want to sit rather than get up and do something. Mary and I would gladly trade butt in the chair for clarity of mind and simply not being on narcotics.
I called the oncologist this afternoon and left a message asking if he concurred on the medicine switch and if so, how could we get it started? No response yet, but I will call again tomorrow. I talked to an acquaintance who's spouse works at Stanford and tenacity is the best approach now to make sure Mary doesn't get lost in the crush of work. I will be tenacious!
Otherwise, Mary is generally out of it most of the time because of the narcotics. She woke me at 5am today asking for a morphine dose because of the pain and we had to follow that several times during the morning hours. Either the pain is knocking her down or the fentanyl-morphine combination is keeping her down. She has a few hours each day where "I feel fine" can be heard, but reality is that simply means the pain is gone for the moment, her tummy is stable and she is awake. Her mind exists in a narcotics cloud and neither one of us likes it. For example, we just spent 5 minutes navigating on the TiVo screen and she couldn't connect scroll up or scroll down with the right button pushes.
The scary part today is that "she felt fine" while I was fixing her breakfast. She came out to the kitchen to help. She was puttering around and all of a sudden she tried to grab the counter. I managed to get to her before she did a face plan into the floor! I walked her back to her lounge chair, she is far safer there. I am glad she wants to help and by inference, not be be so sick. However, she is sick and I hope she doesn't do herself in.
As for me, I saw my dermatologist last week and she took some biopsy sample from my face and they all came back negative--good news! She did tell me to constantly use wide brimmed hats in the sun--my red Irish skin is simply too susceptible to skin cancer.
Tomorrow I see my ophthalmologist which will, I hope, soon set up my cataract surgery. I desperately want that surgery done. We postponed it from May of last year because of Mary's surgery. Now, I am in dire need of getting the lens replaced in my right eye because it has progressed to to point of significantly impairing my vision.
Saturday, February 6, 2010
One more thing...
Mary had an MRI on Monday this last week. The pain doctor said it came back clean--no cancer, no tissue problems such as a herniated disk, no nothing which is one big clue leading him to think the source is damaged nerves.
Lara made it home just fine last night. We got a note from her just before midnight that she had arrived home in Pasadena so she did not experience any of the deep trouble from Friday's storm in the LA area.
Lara made it home just fine last night. We got a note from her just before midnight that she had arrived home in Pasadena so she did not experience any of the deep trouble from Friday's storm in the LA area.
Friday, February 5, 2010
Pain Center First Visit
We met Dr. Stephen Coleman (click here) and he spent quite a bit of time with us (Mary, Lara and me) asking and answering questions, poking and probing around Mary's back and ribs and describing what he thinks and will be doing. As is typical with Stanford, he had a rambling resident sidekick but only a singleton.
The bottom line is that Mary is set for a procedure on March 3 -- 1st available date. This procedure, a medial branch nerve block (click here), is a probing into the area of the specific vertebrae while the doctor is being directed via x-ray imaging. In the meantime, he recommended to Mary's oncologist to write a script for Neurontin (click here) which may act directly on the pain nerves rather than the effect she is having now on morphine and fentanyl.
The suspected mechanism is not necessarily a compression fracture. He thinks it is more likely collateral damage (friendly fire?) from the radiation treatment. That is why he is recommending the neurontin to wean Mary off the narcotics.
The procedure provides both pain relief and diagnostic clues. If the pain is gone after the procedure, it tells them one thing. If it is gone for a few hours, it tells them another thing and if it is gone for a month or two, it tells them a 3rd thing. So the outcome of the procedure can be 1) no change, 2) a change lasting a few hours and 3) a change lasting a few months. Option 1 is obviously not good and we didn't talk the "what if" scenario if it doesn't shut down the pain. If it works for only a few hours, then she will be recommended to take a radiofrequency neurotomy (click here). If it works for a few weeks, then she gets put on a schedule to repeat the procedure as routine.
He also scheduled Mary with the psychologist for an in-depth exploration of her overall outlook. I think this is because she has been in such pain for so long coupled with the Sword of Damocles (cholangiocarcinoma) hanging over her head that he wants to make sure she is doing ok overall. He also thinks the session may lead her to some techniques to minimize pain through posture, breathing and exercise. Mary's response was, "Let's do it, I want this pain to go away and have a life." I think what she meant was, "Living in a narcotics cloud is not living."
This feels like progress, not activity. Lara's comment as we left the complex was, "This was definitely more than a meet and greet and very productive." I have to agree.
After this session, Lara jumped on the freeway heading home to Pasadena tonight to be with her hubby and two girls. All I can say to Lara is thank you, thank you, thank you for being here this week. And, a big Thank You to Scott, Madelyn and Emma for letting us borrow Lara for the week. I cannot express the relief at having someone home with Mary while I attempt to do my job. After all, it is my employer's PPO plan that allows Mary to pursue these aggressive and extensive treatments. Plus, Lara made three kinds of soup, baked some muffins and things all to Mary's specific, bland requirements. Mary asking for bland food? Yep, that's how out of it she is with the pain and narcotics.
The line up is:
Also, Mary saw her opthamalogist this morning. Her eyes are good, the glaucoma is well under control and her perscription does not need adjustment. Whew! One more thing off the agenda.
The bottom line is that Mary is set for a procedure on March 3 -- 1st available date. This procedure, a medial branch nerve block (click here), is a probing into the area of the specific vertebrae while the doctor is being directed via x-ray imaging. In the meantime, he recommended to Mary's oncologist to write a script for Neurontin (click here) which may act directly on the pain nerves rather than the effect she is having now on morphine and fentanyl.
The suspected mechanism is not necessarily a compression fracture. He thinks it is more likely collateral damage (friendly fire?) from the radiation treatment. That is why he is recommending the neurontin to wean Mary off the narcotics.
The procedure provides both pain relief and diagnostic clues. If the pain is gone after the procedure, it tells them one thing. If it is gone for a few hours, it tells them another thing and if it is gone for a month or two, it tells them a 3rd thing. So the outcome of the procedure can be 1) no change, 2) a change lasting a few hours and 3) a change lasting a few months. Option 1 is obviously not good and we didn't talk the "what if" scenario if it doesn't shut down the pain. If it works for only a few hours, then she will be recommended to take a radiofrequency neurotomy (click here). If it works for a few weeks, then she gets put on a schedule to repeat the procedure as routine.
He also scheduled Mary with the psychologist for an in-depth exploration of her overall outlook. I think this is because she has been in such pain for so long coupled with the Sword of Damocles (cholangiocarcinoma) hanging over her head that he wants to make sure she is doing ok overall. He also thinks the session may lead her to some techniques to minimize pain through posture, breathing and exercise. Mary's response was, "Let's do it, I want this pain to go away and have a life." I think what she meant was, "Living in a narcotics cloud is not living."
This feels like progress, not activity. Lara's comment as we left the complex was, "This was definitely more than a meet and greet and very productive." I have to agree.
After this session, Lara jumped on the freeway heading home to Pasadena tonight to be with her hubby and two girls. All I can say to Lara is thank you, thank you, thank you for being here this week. And, a big Thank You to Scott, Madelyn and Emma for letting us borrow Lara for the week. I cannot express the relief at having someone home with Mary while I attempt to do my job. After all, it is my employer's PPO plan that allows Mary to pursue these aggressive and extensive treatments. Plus, Lara made three kinds of soup, baked some muffins and things all to Mary's specific, bland requirements. Mary asking for bland food? Yep, that's how out of it she is with the pain and narcotics.
The line up is:
- CT Scan on Fri the 12th
- Dr. Visser, surgeon, follow up on 19th
- Dr. Fisher, oncologist, follow up on 22nd
- Dr. Gjolgi, psychologist, follow up on March 1
- Medial Branch Nerve Block, March 3
- Dr. Stephen Coleman, follow up, March 23rd.
Also, Mary saw her opthamalogist this morning. Her eyes are good, the glaucoma is well under control and her perscription does not need adjustment. Whew! One more thing off the agenda.
Thursday, February 4, 2010
Progress!
Mary is set for her first visit to the Stanford Pain Clinic at 3PM on Friday! Hooray!
http://paincenter.stanford.edu/education/clinical.html
More later.
Wednesday, February 3, 2010
Activity but no progress...
One of my favorite rules of business is "Don't confuse activity with progress". Well, right now we seem to have stirred up some activity but there is no progress. Mary is set with another CT Scan on the 12th next week, a blood test, a visit with the surgeon (19th) and a visit with the oncologist (22nd).
We have still not heard from Stanford's Pain Management Center. Mary called twice today to confirm the referral was processed and to confirm it was acknowledged. But, no call back yet to start the process for her at the pain clinic itself. Bummer.
Lara has been a saint, fixing meals that Mary is comfortable eating. And, making sure Mary eats approximately on time. Lara has observed that getting meals into Mary on a regular schedule tends to minimize her tummy's rejection mechanism. Last night was butternut soup, tonight was winter minestrone and tomorrow is a potato soup. And, Mary is eating well with that and the rest of the food Lara has prepared. I am sorry to say Lara leaves on Friday so we're back to my limited culinary skills.
Mary was very alert most of today although she didn't manage to get out of her pajamas and take a shower. Tomorrow will be soon enough. She took two doses of morphine, one after lunch and one in the late afternoon. Other than dinner, she has been asleep since the time I got home from work. I am going to bed soon and if she wakes and wants her bedtime routine, we'll do it then.
We have still not heard from Stanford's Pain Management Center. Mary called twice today to confirm the referral was processed and to confirm it was acknowledged. But, no call back yet to start the process for her at the pain clinic itself. Bummer.
Lara has been a saint, fixing meals that Mary is comfortable eating. And, making sure Mary eats approximately on time. Lara has observed that getting meals into Mary on a regular schedule tends to minimize her tummy's rejection mechanism. Last night was butternut soup, tonight was winter minestrone and tomorrow is a potato soup. And, Mary is eating well with that and the rest of the food Lara has prepared. I am sorry to say Lara leaves on Friday so we're back to my limited culinary skills.
Mary was very alert most of today although she didn't manage to get out of her pajamas and take a shower. Tomorrow will be soon enough. She took two doses of morphine, one after lunch and one in the late afternoon. Other than dinner, she has been asleep since the time I got home from work. I am going to bed soon and if she wakes and wants her bedtime routine, we'll do it then.
Tuesday, February 2, 2010
Now What?
We did get a call from Stanford today. The MRI was negative. Nothing. Nana.
Excuse me, my Lady is in excruciating pain, she is living on multiple high test pain killers and penultimate narcotics, you've run every alphabet soup test you can think of and the answer is, "There is nothing there?" Huh?
The oncologists had a confab today, triggered in part by my phone calls to each of them first thing this AM. The MRI was negative. To the limits of the test (and I've written about the sneaky nature of microscopic cholangiocarcinoma previously) the source of the pain does not appear to be a tumor or a cancer. That, of course, is good news. And, the same answer we had in mid-December.
The bad news is that they don't know what is causing the pain.
What they did tell us is that they are referring Mary to the pain center on a "stat" basis. (Trivia bit, stat is short for the Latin word statim which translates to immediately. I just had to know.) And, there was discussion about a spinal specialist. I don't know what the basis of that part of the message was.
The call came to Mary at the house while I was at work. Well, she is doped up with fentanyl and morphine so we are not exactly sure what the message was. Don't you just love the medical folks some times? Let me give this really complex information to a patient who is higher than a kite on narcotics--Mary was so out of it she didn't even put the phone on speaker so her daughter could listen at the same time! Thankfully, Mary wrote the message bearer's name down and I will try to talk to her in the morning.
We feel relief that the answer is, again, no cancer. And very frustrated and concerned that the cause is so elusive.
Lara arrived early this afternoon from Pasadena. MaryR had volunteered to sit with Mary for the time between my departure for work at noon and Lara's arrival expected to be about 3PM. MaryR did that and reported that Mary slept the whole time. When Lara arrived before 2PM, they had a changing of the guard, Mary woke long enough to take another dose of morphine and then proceeded to sleep until I got home about 7pm. We fixed a chicken dinner but Mary didn't eat much at all, she had begun tossing her food again today and she stopped eating because the involuntary muscles were doing it again.
Modern technology. After we ate, Lara fired up her laptop and had a video chat with her husband, Scott, and her two daughters in Pasadena. Today's kids are growing up with video chat technology like i grew up with television. My Dad told stories about the installation of a telephone while he was growing up--and that no one was allowed to answer it when it rang except his Dad (my grandpa). Why? That newfangled technology was possibly dangerous and it took a man to work it safely! As for Lara's girls, last year they experienced daily video chats during breakfast with their Daddy while he was on assignment in New Zealand. The world changes...
Next stop for Mary is the Stanford pain center. i will keep you posted.
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