Mary continues to get stronger. Late in the day yesterday, she was doing some kind of lifting and apparently pulled her incision which caused her some undue pain. Her stomach is not back to normal yet and she is taking Prilosec and Tums but not as much as last week. She didn't feel great today but when I got home the potatoes were in the oven, the chicken was defrosted and ready for my limited skills with a skillet, and overall, Mary participated in fixing dinner. I always take that as a good sign.
I was back at the opthalmologist today. One thing I learned is that the vitreous humor (humor = gel or fluid in the eyeball) is needed for the first few months of gestation. After that, it does nothing and serves no purpose until you get to be my age. Then, as it pulls away it can cause detached retina and blindness. The space in the eyeball vacated by the vitreous humor is replaced with aqueous humor so the eyeball does not collapse. Anyway, the doc said I looked fine, he didn't want to see me until January and then we'll do something about my cataract. Unless, of course, I show symptom requiring his attention: Big ugly floaters or blocked vision or flashes of light.
You may have noticed the slight changes in the blog layout. The most significant is the addition of a Google search function limited to just this blog. I have also added a direct picasa web album widget so you can easily get to our pictures.
In other words, its been a quiet week in Lake Wobegon...where the women are strong, the men are good looking and all the children are above average. You do know that Mary went to college in Stearns County Minnesota, the location of Garrison Keillor's Lake Wobegon.
Tuesday, September 29, 2009
Sunday, September 27, 2009
Ingrid has an observation about her pictures
Always be yourself, because the people that matter don't mind, and the ones that mind don't matter.
A Solid Weekend
Our neighbor Bill got a nice photo of the wildlife in our arroyo (creek, gully, whatever). He was in the backyard of Al, our neighbor to the north and got this very crisp photo. I should note that Bill spends weeks and weeks driving all over the USA to go deer hunting each year. He applies for and gets proper permits and then he heads off to whichever state he has permits for. My guess is that he is a pretty good deer hunter so he knows how not to spook them like us citified folk. Today, I am glad he was shooting with a camera!
Thank you, Bill, for this great picture!
On a different note, we just got back from Nordies (Nordstroms) and for those who haven't tracked me on Facebook, you didn't get to discover how varied my interests can be in a 2 hour shopping trip when equipped with a fully charged iPhone. Oh, and Mary got a whole stack of clothes that now fit her. The simple fact she was interested in clothes and wanting to buy some that fit was a wonderful event. In between 'showings' is a lot of dead time and that's when my iPhone with its Facebook app took over.
I took this into a corner of mirrored walls. You can see Francys holding a bunch of clothes and a pretty good collection on the table next to my right side. Only a couple were not purchased.
Overall, Mary is getting stronger by the day. Its great to see it happening! I keep thinking of what the two doctors told us, "It is a miracle" and I am a believer!
Yesterday was a generally ok day. Mary went grocery shopping with me and that was very nice. Today, she skipped Farmers' Market so I went and picked up our regular supplies. Mary then joined me for an early lunch at the Purple Onion with Ingrid, who later came to the house to collect lavender and chili from our garden (pictures in previous posts). We had a nice time visiting with Ingrid.
Ingrid also brought her fantastic chicken noodle soup which will serve us well over the next few days! Remember, Ingrid is a fabulous masseuse and you can order up your treatment at http://www.massagerescue.com
Idjit Dawg on a hot day
(35.5C).
Friday, September 25, 2009
Friday Evening
Mary had a rough day today. Her digestive system was very acidic and the pepsid ac and tums didn't help too much. She did have a portion of tonight's pasta dish including a meatball so she is taking in calories. But her overall spirits today are definitely down.
Yesterday was much better. In fact, as I got home from work we went for a neighborhood walk with the two dogs. Idjit Dawg was consistent in behavior--I think the desire to attack the 90 lb black big dog was a perfect illustration of ID's mental processes. Mary had prepared a quick but nice dinner that was a mix of leftovers and some great sausage from Aidells.
This was a big week for another reason. My grandson, Daniel, had his fifth birthday. We did a video chat to Denver on his birthday and had a very nice chat. His big gift was a batman costume because Danny is a real superhero fanatic.
Other than the acidic stomach, Mary is feeling much better. Oct 12 still looks like a solid day to start the chemo.
Yesterday was much better. In fact, as I got home from work we went for a neighborhood walk with the two dogs. Idjit Dawg was consistent in behavior--I think the desire to attack the 90 lb black big dog was a perfect illustration of ID's mental processes. Mary had prepared a quick but nice dinner that was a mix of leftovers and some great sausage from Aidells.
This was a big week for another reason. My grandson, Daniel, had his fifth birthday. We did a video chat to Denver on his birthday and had a very nice chat. His big gift was a batman costume because Danny is a real superhero fanatic.
Other than the acidic stomach, Mary is feeling much better. Oct 12 still looks like a solid day to start the chemo.
Thursday, September 24, 2009
Wednesday was super
When I called on my way home from work, I asked Mary what we were having for dinner. She was preparing a squash ravioli dish (albeit from frozen ravioli) with a sage-butter sauce and a tossed salad. All I had to do when I got home was open the San Pellegrino and cut the bread. Now, Mary requests a particular bread, Acme, and two of our Los Gatos stores carry it. I didn't realize how special this bread was until I read this Wikipedia article. Now I understand why it is so good.
The bottom line is that our girl is showing signs of recovery, a little more each day. The fact she tackled dinner all by herself was a major milestone. Until now, she waited until I get home, and then we prepare the food together--she does the finesse and brainy stuff and I am the brawn (no giggles). As we finished eating, she did admit she was wiped out from the effort. But, its a huge step that she even tried to make dinner. I am really excited for our "Miracle Girl."
In other words, the Oncologist wants Mary feeling 80% of normal--similar to last February--before starting the chemo. Based on her progress in just a few days, I would say she should be there with time to spare by Oct 12. That date is the first chemo therapy (Gemzar) administered once a week intravenously.
As for me, no new problems other than the vitreous gel does interfere with vision in my right eye. The doc said three weeks or so before its settled down.
Pat
Wednesday, September 23, 2009
A Miracle--Again!
Yesterday saw both my primary care physician and my ophthalmologist. The eye doc was going to be looking for some odd stuff so Mary came along as driver. This happened last night at 7:30PM because when I described the symptoms to the doctor in the afternoon, he insisted on seeing me after his surgery session so 7:30PM was the earliest.
Given his office was empty, he invited Mary in to the examination room to participate in the banter. Heck, he even gave her one of his instruments to look into my eyeball. She said it was cool--and crazed.
We were there for almost two hours. While bantering, we talked about Mary and her Cholangiocarcinoma and he volunteered, "Mary's situation is a miracle!" Let me see, that sounds a lot like my heart specialist a couple of weeks ago. I guess when you have two medical specialists claiming a miracle, its time to think that perhaps it really is something very special!
As for my eye, I am suffering from vitreous humor (vitreous gel) detachment which means the vitreous fluid aka gel interior to the eyeball is separating from the retina. This is an extremely common behavior and happens very frequently. Mary had the same thing happen earlier this year. In her case, it also started to tear the retina which required immediate laser surgery to stop the loss of vision. Basically, it is nothing to worry about but I am not supposed to play sports with physical contact or fast head movements (a real sacrifice given my athletic bent), and I am supposed to see the doc weekly for a while. Not a biggie. He was a touch frustrated because the eye has a fairly significant cataract that we planned on removing sometime soon. Because my last regular appointment was the same month as Mary's liver surgery, I told him it I would schedule it when things settled down a bit. Now, its in the way of him seeing what he wants to see. Net, net, its this damn thing called getting old.
By the way, when he does do the cataract surgery (3 months or so from now) he can correct my vision to be 20-20. This is the eye that has been so nearsighted since my childhood. Imagine, I might be able to stop wearing glasses! I would need reading glasses, but wow!
As for my primary care physician, she was very pleased with what has been done and my situation with my heart. She reconfirmed a suspected viral infection creating the pericardial effusion. She also confirmed the best cure was time and I could use either aspirin or Advil if I was uncomfortable. She is in regular communication with the heart specialist. My next appointment is set for December for a physical so the primary care doc is feeling pretty good about me. Oh, yeah, and the symptoms that caused me to go see the doc in the first place are gone.
Mary? She's fine.
Monday, September 21, 2009
A Monday Wrap
Mary's Oncologist apparently treated Patrick Swayze in his last months. Dr. George Fisher was on Larry King Live and here is a link to the clip. We did not learn this from Dr. Fisher, but from Mary's Radiologist in our visit with him today.
OK, so here is the wrap up. As I wrote, we met with the Surgeon, Dr. Brendan Visser, last Friday after the CT Scan had been performed. That report is down the page but if you missed it, here is a link to 'A Wonderful Friday.'
Today, we met with the Oncologist (Dr. Fisher) and later with the Radiologist (Dr. Daniel Chang). The Oncologist is recommending mild chemotherapy which means a single chemo drug administered once a week for three weeks and then a week off. Nine treatments (three months) and Mary is done. The chemo trade name is Gemzar (gemcitabine) and its use is defined in this government clearinghouse website. A more recent analysis, which mirrors almost exactly Mary's situation, was published in August this year. Here is the link. Reading this link explains why Dr. Fisher is recommending this chemo treatment. For those who don't want to dig further, here is the conclusion statement.
"CONCLUSIONS: Postoperative adjuvant gemcitabine-based chemotherapy may be a promising strategy to improve survival after surgical resection for hilar cholangiocarcinoma. A prospective randomized study should be done to confirm the results of this study."
The problem is cholangiocarcinoma is such a deadly cancer that the ability to do studies is severely hampered by the lack of survivors.
Dr. Fisher talked at length about the use of Gemzar combined with Platinol which would have been much more aggressive. His opinion is that the surgery and the radiation therapy have done the heavy lifting. As such, the objective of this next therapy is to make sure every cancerous cell is gone. He did describe Mary's cancerous material from the pathology reports and because Mary presented early (how lucky was that!) the cancer is of a form that Gemzar should work if the cancer is still present. That mirrors the August report I cited previously. He also used the R word--Mary is in Remission. That is both good and bad, of course. Good in that Mary should be back to her old self fairly quickly either during or more likely after the chemo. Bad, in that remission implies the dastardly cancer can return.
The Oncologist acknowledged, as did the Surgeon last week, that cholangiocarinoma is so rare that there is no recommended protocol or documented experience base to draw from. It is pretty much up to the docs on Mary's team.
The Radiologist, Dr Daniel Chang, wanted to know how Mary was doing and to learn a little about the fluid retention. The good doctor and his resident were in a good mood and so were we because we had already met with Dr. Fisher and had learned it would be mild chemo for only 3 months. It turns out the Surgeon was of the opinion that the radiation guys hit Mary too hard, too soon which impacted the liver to the point that is caused the bloat. In fact, Dr. Chang said Dr. Visser caught him in the hallway and had a conversation about Mary and the presumed cause. The Radiologists' experience does not include previously seeing this so they are trying to figure out if it was some other cause. The humor was flying and they said, "We are trying to figure out how to blame the surgeon but it seems we can't find a good link." I commented that the technical term used by the surgeon to describe Mary's liver was "The radiation docs cooked it." The fact is, they are all a great team and they are feeling good about Mary's recovery. I am sure they see far too many cases of all sorts that are nowhere near the positive outlook they see with Mary.
The basics are:
One thing the Oncologist was very clear about is the fluidity of the chemo therapy. Each week requires a blood test and if the white count, red count, blue count (hey, I am not a doc) is below minimums, they will not administer the chemo that week. If that happens, the chemo schedule is reset. However, they indicated the 9 treatments is the goal and they'd like it done in no more than 3.5 months.
OK, so here is the wrap up. As I wrote, we met with the Surgeon, Dr. Brendan Visser, last Friday after the CT Scan had been performed. That report is down the page but if you missed it, here is a link to 'A Wonderful Friday.'
Today, we met with the Oncologist (Dr. Fisher) and later with the Radiologist (Dr. Daniel Chang). The Oncologist is recommending mild chemotherapy which means a single chemo drug administered once a week for three weeks and then a week off. Nine treatments (three months) and Mary is done. The chemo trade name is Gemzar (gemcitabine) and its use is defined in this government clearinghouse website. A more recent analysis, which mirrors almost exactly Mary's situation, was published in August this year. Here is the link. Reading this link explains why Dr. Fisher is recommending this chemo treatment. For those who don't want to dig further, here is the conclusion statement.
"CONCLUSIONS: Postoperative adjuvant gemcitabine-based chemotherapy may be a promising strategy to improve survival after surgical resection for hilar cholangiocarcinoma. A prospective randomized study should be done to confirm the results of this study."
The problem is cholangiocarcinoma is such a deadly cancer that the ability to do studies is severely hampered by the lack of survivors.
Dr. Fisher talked at length about the use of Gemzar combined with Platinol which would have been much more aggressive. His opinion is that the surgery and the radiation therapy have done the heavy lifting. As such, the objective of this next therapy is to make sure every cancerous cell is gone. He did describe Mary's cancerous material from the pathology reports and because Mary presented early (how lucky was that!) the cancer is of a form that Gemzar should work if the cancer is still present. That mirrors the August report I cited previously. He also used the R word--Mary is in Remission. That is both good and bad, of course. Good in that Mary should be back to her old self fairly quickly either during or more likely after the chemo. Bad, in that remission implies the dastardly cancer can return.
The Oncologist acknowledged, as did the Surgeon last week, that cholangiocarinoma is so rare that there is no recommended protocol or documented experience base to draw from. It is pretty much up to the docs on Mary's team.
The Radiologist, Dr Daniel Chang, wanted to know how Mary was doing and to learn a little about the fluid retention. The good doctor and his resident were in a good mood and so were we because we had already met with Dr. Fisher and had learned it would be mild chemo for only 3 months. It turns out the Surgeon was of the opinion that the radiation guys hit Mary too hard, too soon which impacted the liver to the point that is caused the bloat. In fact, Dr. Chang said Dr. Visser caught him in the hallway and had a conversation about Mary and the presumed cause. The Radiologists' experience does not include previously seeing this so they are trying to figure out if it was some other cause. The humor was flying and they said, "We are trying to figure out how to blame the surgeon but it seems we can't find a good link." I commented that the technical term used by the surgeon to describe Mary's liver was "The radiation docs cooked it." The fact is, they are all a great team and they are feeling good about Mary's recovery. I am sure they see far too many cases of all sorts that are nowhere near the positive outlook they see with Mary.
The basics are:
- Mary's CT scan from last Friday was clean in the liver area as I reported last week. It is also clean throughout her entire abdominal cavity. Big Hooray on that news! In fact, the radiologist took the time to show us the CT scan results on a computer screen. Cool!
- All of Mary's blood tests results are "nominal" which is fantastic. They told her to put salt back in the diet. And, she should continue her late afternoon protein treat. Mary did buy some Boost. Anyone want to buy 11 bottles of Boost? After the first bottle, Mary immediately switched to a protein powder in a home made smoothie. Her taste buds are re-emerging! Yeah!!
- They are hoping Mary continues to get stronger over the next few weeks. Dr. Fisher said he likes his patient's self assessment to be "80% of feeling normal" before starting the chemo. Mary's self report today was "50% to 60%" so three weeks should be just perfect.
- Mary does experience acid stomach which is something new for her--she rarely ever experienced it prior to all of this. The reason is that the radiation viciously attacks stomach and intestinal linings and they need more time to heal. If there is no food in her digestive tract, stomach acid will attack the damaged tissue causing heartburn.
- Wine with dinner now and then and an after dinner hot tub soak would be just peachy from now on. The wine is easy (we had some tonight for our 13th anniversary) and I'll fire up the hot tub over the weekend.
One thing the Oncologist was very clear about is the fluidity of the chemo therapy. Each week requires a blood test and if the white count, red count, blue count (hey, I am not a doc) is below minimums, they will not administer the chemo that week. If that happens, the chemo schedule is reset. However, they indicated the 9 treatments is the goal and they'd like it done in no more than 3.5 months.
Its mild and only 3 months
Dr Fisher is recommending 3 months of mild chemo. "Frosting on the work of the surgeon and radiologist" is the way he put it. Again, there is no known protocol and it's strictly best judgement.
One injection per week for 3 weeks and one week off. That is a total of 9 injections. However, if Mary's blood work shows too much of a drop, then it would go to 2 on and 1 off.
We picked the start date for Monday Oct 12.
Sent from my iPhone
Sunday, September 20, 2009
Trying soooo hard
We've had a wonderful weekend, if you can discount the fact that I've been pulled in to support a big presentation to the financial community on Monday in the afternoon. Part of the team is here in Silicon Valley and the other part is in Hamburg Germany. The nine hour time difference leads to some interesting late night work. The presentation is after lunch in Hamburg on Monday. Watch for news from www.appliedmaterials.com
Mary had a very good weekend, I think. On Saturday, we shopped at Lunardi's for groceries and that was followed by Mary taking a big role in the kitchen preparing dinner. We had mushrooms and onions sautéed to go with the cube steak I cooked.
Today, Mary went to Market with me and then down to the Onion. We missed Ingrid and MaryR but we had a nice noon meal.
I have to tell you about our technology environment. Ingrid was in San Francisco somewhere near Cliff House on the coast. While we are at the Onion, Ingrid sends me a text message asking where Suppenkeueche on Laguna is located AND how to get there. I drag out my iPhone and look up the target. The first issue is that Ingrid has misspelled it but my iPhone figures that out. The correct spelling is Suppenküche and its located on Laguna. I then ask my iPhone how to get from Cliff House to Suppenküche and it promptly tells me. I then text those instructions to Ingrid. I get a big thank you right away. Later, I get a message from Ingrid, "
Tonight, Mary was not as active but definitely helped me fix the carrots, fresh corn on the cob from Farmers' Market and pacific red snapper from our Market's fishmonger.
Tomorrow afternoon is the Oncologist and Therapy Radiologist at Stanford. We are trying soooo hard to not jump ahead of what we will hear. Mary pointed out to me tonight that the surgeon on Friday told us the CT scan was clear, but he was referring to the liver only. What we know about Cholangiocarcinoma is that it does not necessary 'metastasize' but instead transfers to create tumors on other, remote (from the liver) organs. We'll hear the complete CT scan report tomorrow.
We will also hear about the recommendations for further chemotherapy. As I have written before, the recommendation will be a) none, b) mild or c) hair falling out aggressive. And, whether it lasts four or six months.
Milt sent a note to the blog. Thank you Milt! (And I have fixed his typo). Its a small world. Our friend Ute was here last weekend on a trip from her home near Dresden Germany. She stopped in New York State on her way to Silicon Valley to attend a meeting run by our friend...Milt! Our history includes Ute being my customer while Milt was part of the group I worked for at Applied Materials. It is a small world.
If you would like to send a note to the blog, send an email to lamey(dot)pat(dot)california(at)blogger(dot)com Replace the (dot) with . and the (at) with @
We did watch the end of the Minnesota-Cal game on Saturday. When we tuned in, it was early in the 4th quarter and the game was tied. Unfortunately, Cal then scored two TDs based on the Gopher quarterback passing the ball to the Cal defenders--more than once! The bad news is that here in Silicon Valley we have more than just a couple Cal grads who will be very pleased to tell me about the game tomorrow. However, nothing is as sweet as USC losing to the Huskies just because of my co-worker David's fascination with USC sports teams.
Anyway, both my Vikings and 49ers won today and the are both undefeated this season (I know, its only the 2nd week and 2-0 is no big deal). However, the 49ers travel to Minnesota for next weeks game and I must decide who to root for! Mary has said that if the Vikings get to the Superbowl, we'll have a Superbowl party that includes some authentic Minnesota food--you don't want to know.
All in all, Mary's spirits are up but we are leery of what tomorrow will bring. I'll keep you posted.
Mary had a very good weekend, I think. On Saturday, we shopped at Lunardi's for groceries and that was followed by Mary taking a big role in the kitchen preparing dinner. We had mushrooms and onions sautéed to go with the cube steak I cooked.
Today, Mary went to Market with me and then down to the Onion. We missed Ingrid and MaryR but we had a nice noon meal.
I have to tell you about our technology environment. Ingrid was in San Francisco somewhere near Cliff House on the coast. While we are at the Onion, Ingrid sends me a text message asking where Suppenkeueche on Laguna is located AND how to get there. I drag out my iPhone and look up the target. The first issue is that Ingrid has misspelled it but my iPhone figures that out. The correct spelling is Suppenküche and its located on Laguna. I then ask my iPhone how to get from Cliff House to Suppenküche and it promptly tells me. I then text those instructions to Ingrid. I get a big thank you right away. Later, I get a message from Ingrid, "
Tonight, Mary was not as active but definitely helped me fix the carrots, fresh corn on the cob from Farmers' Market and pacific red snapper from our Market's fishmonger.
Tomorrow afternoon is the Oncologist and Therapy Radiologist at Stanford. We are trying soooo hard to not jump ahead of what we will hear. Mary pointed out to me tonight that the surgeon on Friday told us the CT scan was clear, but he was referring to the liver only. What we know about Cholangiocarcinoma is that it does not necessary 'metastasize' but instead transfers to create tumors on other, remote (from the liver) organs. We'll hear the complete CT scan report tomorrow.
We will also hear about the recommendations for further chemotherapy. As I have written before, the recommendation will be a) none, b) mild or c) hair falling out aggressive. And, whether it lasts four or six months.
Milt sent a note to the blog. Thank you Milt! (And I have fixed his typo). Its a small world. Our friend Ute was here last weekend on a trip from her home near Dresden Germany. She stopped in New York State on her way to Silicon Valley to attend a meeting run by our friend...Milt! Our history includes Ute being my customer while Milt was part of the group I worked for at Applied Materials. It is a small world.
If you would like to send a note to the blog, send an email to lamey(dot)pat(dot)california(at)blogger(dot)com Replace the (dot) with . and the (at) with @
We did watch the end of the Minnesota-Cal game on Saturday. When we tuned in, it was early in the 4th quarter and the game was tied. Unfortunately, Cal then scored two TDs based on the Gopher quarterback passing the ball to the Cal defenders--more than once! The bad news is that here in Silicon Valley we have more than just a couple Cal grads who will be very pleased to tell me about the game tomorrow. However, nothing is as sweet as USC losing to the Huskies just because of my co-worker David's fascination with USC sports teams.
Anyway, both my Vikings and 49ers won today and the are both undefeated this season (I know, its only the 2nd week and 2-0 is no big deal). However, the 49ers travel to Minnesota for next weeks game and I must decide who to root for! Mary has said that if the Vikings get to the Superbowl, we'll have a Superbowl party that includes some authentic Minnesota food--you don't want to know.
All in all, Mary's spirits are up but we are leery of what tomorrow will bring. I'll keep you posted.
All Good News!
Mary and Pat,
Great to hear that Mary's recovery is proceeding well! Sorry that tests are still required, but I guess it comes with the territory. Mary, I bet you didn't mind skipping that oral-die crap.
I am glad that Ute, Thomas, and Susan got to stop by and see y'all. Ute and Thomas came through Albany. She attended my advisory-group meeting before heading your way. Joki will be coming to Austin to attend our ISMI Symposium in October. Pat, I'll be teaching Yield Class again.
Love,
Milt
Friday, September 18, 2009
A Wonderful Friday!
The alarm went off at 5AM so Mary could eat a bit before the 5:30AM cutoff required by her CT scan. We arrived at the imaging center a few minutes early--thanks to our GPS unit that took us to the right place instead of where I thought we were supposed to go. Hey...I didn't have to stop and ask for directions.
Mary caught a break right away and she did not have to drink the imaging goo. Instead, she was given an injection and taken to the scanner. It was all over by 8:20AM so we went to the closest Starbucks (thank you iPhone--there is an app for that) and had our drinks and a breakfast thingy.
The first task after arriving at the hospital was a blood draw. From there, we went to the reference library in Stanford's Cancer Center. We are looking for technical papers on the effectiveness of chemotherapy applied to cholangiocarcinoma in resected (operated on) patients. I did find one that cited a very old study (8 years) that reported a result from ~550 patients. It said there was no impact on the cancer for those who had chemo vs those who did not have chemo. At that point, the Librarian asked if she could run a search for us so Mary gave her the particulars and they will email us their results. Nice!
The good doctor was a bit late. We were called in about 12:10 for our 11AM appointment. And, we only had to wait in the examination room for another half-hour. What we learned is (get ready to cheer):
- The CT Scan shows no visible cancer sites.
- The CT Scan shows the liver is about back to where is was before radiation therapy.
- The blood tests show her electrolytes (sodium, potassium, etc.) are all a-ok, nominal, no problemo!
- Mary can stop the diuretics when the bottles are empty in about six days.
- And, the official weigh in at Stanford shows Mary has eliminated all the bloat!
Dr. Visser was very strong in his opinion that "Mary is young" and she has the best odds of having a great quality of life for a long time. He said "You are young" at least four times so he is really trying to pump Mary up to keep the fight going.
Mary told him, by the way, that as of yesterday she felt the best she has felt since radiation started. He explained that radiation therapy is not immediate in its action and having the peak of negative impact occur on the liver generally occurs weeks after the radiation stops. Thus, the major concern with her system bloating for it may have indicated something more serious. The opinion now is that it is under control and she is in a super place.
OK, so today is a preview of Monday and the signs are good. We'll have a conversation with the Oncologist and then Mary will decide what she wants to do!
Wednesday, September 16, 2009
Tuesday, Wednesday
And not much to report. Mary continues to lose the excess fluids and is now within 3 lbs of the weight she carried from early June to late July before the fluid retention started. I want her to drop the diuretics but she is waiting until we see the surgeon this Friday.
Every other Wednesday is Maids day. For the first time since the surgery in May, Mary took a big role in straightening the house and getting it ready for the maids. That was great because I was under the gun for work and was up until 1AM followed by telecon meetings at 7AM. Mary simply took on what she had been doing before all this started. Why, you ask, do we have The Maids come in? We have a Devil Dawg aka Cavalier King Charles. We don't have dust bunnies any more, we have hair gorillas. Our English Cocker barely sheds while the Devil Dawg can turn any dark fabric white in a flash. Our favorite instrument (after our iPhones) is a sticky roller.
Friday and Monday are both big days, with Monday being the champ. On Friday, Mary has another high resolution, biphasic CT scan. That is followed by a visit with the surgeon to take a look at the water retention issue. Its too bad they are in the same morning, the CT scan radiologist and surgeon will not have time to evaluate the CT scan before the visit with the surgeon.
On Monday, she sees the Oncologist and the Radiologist who ran her program. This is the big meeting where we find out if (a) the CT scan shows a tumor has developed somewhere in her abdomen in spite of the radiation and chemo. Or, (b) there is no tumor visible but the recommended course of action is chemo. And, (c), if chemo is prescribed, is is mild chemo or aggressive, hair falling out, weight losing chemo. Of course, there is a alternate to (b) and that would be there is no tumor visible and because chemo has not been proven effective against cholangiocarcinoma, no chemo is recommended. Only Monday will tell.
All in all, Mary continues to heal. I suspect the diuretics are adding some stress to her digestive system and that is why I want her to stop. However, she does still have her nausea meds so she is treating her tummy discomfort using those. As I said, we see the doc on Friday and we'll get an answer then. By then, she may be within 1 lb of her pre-bloated weight.
Other than too many early morning phone calls and late night work sessions, we are doing just fine. In fact, Mary has now started to use her Facebook account so if you would like, you can find her there. To find her, search for Mary Hughes and then filter by school for ASU. There are only three and you'll recognize her picture, I hope.
Tuesday, September 15, 2009
Monday was a quiet day
Mary drove herself to Stanford for the weekly blood test. And, she continues to lose weight from the retained fluids. She has just a few pounds to go so I expect by the time she sees the surgeon this Friday, she will be back to her pre-bloat weight--or within a pound of it. That should let her stop the diuretics and leave her with blood pressure pill and glaucoma eye drops as her only daily meds.
Our next door neighbor came over on Sunday when Charli and Tim were still here. He took them down to the creek to show Charli some of our wild life (I was on the phone and couldn't go and Mary wasn't up to the 69 steps down to our creek). Our neighbor tells us this doe has been hanging around for several weeks now. On Sunday, Tim and Charli saw this doe and also the buck with his antlers. I am still hoping to see these neighbors.
I want to thank our neighbor, Tim B, for these photos. Frankly, I haven't seen these local residents yet! 
Sunday, September 13, 2009
Sunday Evening
I took Tim and Charli to the airport about 3PM. Mary and I were both sad to see them go but it was good to have them be here for a visit. I'll keep adding pictures to the album from this weekend over the next day or so.
Ute, Thomas and Susan dropped in later in the afternoon. It was very good to see them again. We saw Susan and Thomas in mid-July when Ute's husband, JoKi, was here for a visit. I forgot to take pictures but I can assure you Ute was here.
Mary was still exhausted today so she pretty much stayed home and only went for a short walk with Charli, the dogs and me in the early afternoon. On my run to Farmers' Market, I dropped Tim and Charli at Los Gatos' Oak Meadow Park. Mary was not up to joining either Tim and Charli or me at either location. Charli had an urge to see the ducks and ride the Carousel and that mission was accomplished.
The coming week is pretty calm. Mary will take herself to Stanford for her weekly blood test on Monday. On Friday, she has another biphasic CT scan followed by a visit with the surgeon because of her fluid retention issues and I'll be there for both of those. The following Monday (8 days from now) she sees both the radiologist and the oncologist. That's when we'll learn if or what chemo will be recommended going forward.
Ute, Thomas and Susan dropped in later in the afternoon. It was very good to see them again. We saw Susan and Thomas in mid-July when Ute's husband, JoKi, was here for a visit. I forgot to take pictures but I can assure you Ute was here.
Mary was still exhausted today so she pretty much stayed home and only went for a short walk with Charli, the dogs and me in the early afternoon. On my run to Farmers' Market, I dropped Tim and Charli at Los Gatos' Oak Meadow Park. Mary was not up to joining either Tim and Charli or me at either location. Charli had an urge to see the ducks and ride the Carousel and that mission was accomplished.
The coming week is pretty calm. Mary will take herself to Stanford for her weekly blood test on Monday. On Friday, she has another biphasic CT scan followed by a visit with the surgeon because of her fluid retention issues and I'll be there for both of those. The following Monday (8 days from now) she sees both the radiologist and the oncologist. That's when we'll learn if or what chemo will be recommended going forward.
Saturday, September 12, 2009
A Big Day
There were signs it would be a big day. We had thunderstorms in the wee hours of the morning. We almost never get real thunderstorms here so it was truly a big deal. Some parts of the bay area got quite a bit of rain. Here in Los Gatos we only had a trace but I am sure it counts as our first rain since May or June. I really don't recall--probably because I was distracted this year.
We had a great time today. Roaring Camp Rail Road is a fun event with a real live, 100 year old steam engine pulling a half a dozen open cars up a small mountain (aka Bear Mountain). The noise of the old chug, chug and the hiss of the steam and the clanging of the bell are all topped with the sound of the steam whistle. What a blast! I kept thinking of my grandfather Connolly who was an engineer for one of the two RR in St Paul. Great Northern or Northern Pacific, I can never remember. He drove the train for decades. It turns out that Roaring Camp RR was built in 1964 in Felton CA, the same year my grandfather died. It is basically a living history museum (for profit) with a neat atmosphere and a great experience.
From there, we drove to the Santa Cruz Wharf and had a very late lunch at Olitas Cantina and Grill. Mary and I split a lunch order of shrimp tacos while Charli had the quesadilla and Tim dove into a pair of tacos. Frankly, I overdid it on chips and salsa too. Anyway, we had a major toast for that meal. It was the last restaurant Mary ate in on the eve of her major liver surgery, May 10. It was truly good to have her back at a familiar place!
We stopped at the Los Gatos Apple store on the way home. Mary bought the new Snow Leopard OS upgrade for her big iMac and Tim decided to upgrade his iPhone 3G to a 3GS. Well, somehow we convinced him to sell me his 3G so I could upgrade from my 2G. Recall, if you are a regular reader, that I recently acquired the nearly two year old 2G when Mary bought her new iPhone 3GS a short time ago. Anyway, we have a load of gizmos to start up, sync, install and otherwise make work. It will keep us busy for a while. Actually, everything is working already. Hey, they are Apple products and they just work.
Frankly, this big day was all a bit too much for Mary. When we got home, she was exhausted. Charli and I entertained the neighbors and the dogs in the front yard. None of us had dinner--well, Charli did but she is five. Mary nibbled a bit but her tummy wasn't great because we were off her normal food cycle. Lunch was too late and she was too full to get back on her normal cycle.
Tomorrow, Sunday, we expect to see Ute. That will be fun! We haven't seen her since her wedding to JoKi in Germany last November. Tim and Charli will fly home to Tucson in the afternoon.
Pictures? You bet. Here is a link to the album for Charli and Tim's visit.
We had a great time today. Roaring Camp Rail Road is a fun event with a real live, 100 year old steam engine pulling a half a dozen open cars up a small mountain (aka Bear Mountain). The noise of the old chug, chug and the hiss of the steam and the clanging of the bell are all topped with the sound of the steam whistle. What a blast! I kept thinking of my grandfather Connolly who was an engineer for one of the two RR in St Paul. Great Northern or Northern Pacific, I can never remember. He drove the train for decades. It turns out that Roaring Camp RR was built in 1964 in Felton CA, the same year my grandfather died. It is basically a living history museum (for profit) with a neat atmosphere and a great experience.
From there, we drove to the Santa Cruz Wharf and had a very late lunch at Olitas Cantina and Grill. Mary and I split a lunch order of shrimp tacos while Charli had the quesadilla and Tim dove into a pair of tacos. Frankly, I overdid it on chips and salsa too. Anyway, we had a major toast for that meal. It was the last restaurant Mary ate in on the eve of her major liver surgery, May 10. It was truly good to have her back at a familiar place!
We stopped at the Los Gatos Apple store on the way home. Mary bought the new Snow Leopard OS upgrade for her big iMac and Tim decided to upgrade his iPhone 3G to a 3GS. Well, somehow we convinced him to sell me his 3G so I could upgrade from my 2G. Recall, if you are a regular reader, that I recently acquired the nearly two year old 2G when Mary bought her new iPhone 3GS a short time ago. Anyway, we have a load of gizmos to start up, sync, install and otherwise make work. It will keep us busy for a while. Actually, everything is working already. Hey, they are Apple products and they just work.
Frankly, this big day was all a bit too much for Mary. When we got home, she was exhausted. Charli and I entertained the neighbors and the dogs in the front yard. None of us had dinner--well, Charli did but she is five. Mary nibbled a bit but her tummy wasn't great because we were off her normal food cycle. Lunch was too late and she was too full to get back on her normal cycle.
Tomorrow, Sunday, we expect to see Ute. That will be fun! We haven't seen her since her wedding to JoKi in Germany last November. Tim and Charli will fly home to Tucson in the afternoon.
Pictures? You bet. Here is a link to the album for Charli and Tim's visit.
A fun day
We went to Felton to ride the Roaring Camp Railroad. That was a lot of fun. Then we went to Santa Cruz and had lunch on the wharf at Olitas. That was a milestone in itself. Our last dinner before Mary's surgery on May 11th was at that restaurant. It was really nice to be back there with her!
She continues to lose weight. Its been a pound a day for several days now so the liver appears to be working and the diuretics are doing there thing! Hooray!
I'll post more later. We do have house guests!
Friday, September 11, 2009
They're here!
Charlize and Tim arrived on time, thank you Southwest. From Willow Street, we ordered up pizza and salad for the adults. Grandma made blue box mac and cheese for Charli. Feeding our travelers was a priority given they had left Tucson in the middle of the afternoon and we got home about 8PM.
Its fun to watch the twinkle in Mary's eye as she observes or interacts with Charli. After dinner, Grandma and Charli played a card game called "Go Fish" with Charli's rules. Most notable of Charli's rules is the batch processing of her hand. She lays down all her cards and asks if you can match any of them. It sort of takes the drama out of the game and Grandma didn't care.
Mary noted last night that her ankles had returned. Again, a little less fluid so the meds and diet are working.
Its fun to watch the twinkle in Mary's eye as she observes or interacts with Charli. After dinner, Grandma and Charli played a card game called "Go Fish" with Charli's rules. Most notable of Charli's rules is the batch processing of her hand. She lays down all her cards and asks if you can match any of them. It sort of takes the drama out of the game and Grandma didn't care.
Mary noted last night that her ankles had returned. Again, a little less fluid so the meds and diet are working.
Thursday, September 10, 2009
Thursday is minus 4!
No, I am not talking about the first frost in Minnesota. September is a bit early for four below. I am talking about Mary's report this morning that she is four pounds down from her high weight. That's about 1/3rd of the total she gained. Good news! Between the low salt diet and the diuretics, she is slowly but surely losing the fluid weight!
Nothing to report really.
Our friends, Dave and Marge, headed for a wonderful Paris vacation this week. And, about ten hours ago Marge reported that after 20 hours on the ground, Dave was urgently called away to Taipei. So, she is stuck in Paris all alone with reservations for all sorts of neat places and restaurants. On her facebook page, she asked for "any volunteers" who'd like to join her?
Mary is doing quite well although low energy. She is eating well but small portions and often. The 5PM meal is a protein enhanced smoothie of various berries. We generally have a regular meal about 7 to 8PM and Mary eats everything that I fix but very small amounts. It makes for great leftovers. Last night was chicken breast, yams and broccoli and the chicken breast fed us for lunch today too.
Tim and Charli are on the way and should land in about an hour. Having them visit until Sunday will be a great time.
Wednesday, September 9, 2009
Another Good Day
Tuesday was a good day overall. I took my car in to the dealer for service and Mary was ready to come and pick me up but it turns out they had a loaner waiting for me so that saved her the trip. I then went into "Driving Miss Mary" mode and took her to Stanford for her weekly blood test and on the way home, a visit to Cosentino's to pick up PB2, a low salt, fat free dry peanut butter that she mixes with water to provide protein as needed.
In the afternoon, I continued playing "Driving Miss Mary" and took her to her Opthalmologist where she had an interocular pressure reading of 12 mm, down from her high of 21mm earlier this year. It was that high reading that caused the doc to put her on Xalatan to lower the pressure. And, as expected, the known side effect has happened. It turns out Xalatan is also sold as Latisse for eyelash growth. Mary's got great eyelashes right now!
From there, the driver took Miss Mary to a quick hit for both Lunardi's and Whole Foods. Fortunately, they are both in town and across the street from each other.
Dinner last night was BLT sandwiches. Mary had purchased some great tomatoes on Sunday and we wanted to use them in a traditional summer dish. One of the reasons to go to Lunardi's was to pick up bacon for the sandwiches. And, yes, her salt management was a wee bit off yesterday in total but the sandwiches tasted great!
On the overall healing front, Mary reported she lost another pound yesterday (total of 3 out of the 12 or so she gained in the last weeks of radiation/chemo) so we think the liver and the diuretics are doing the work. She'd like them to work faster, but they are working. And, the last bit of incision that didn't heal due to the radiation treatment is now just about completely healed.
We ended the day by watching another episode of Band of Brothers, the HBO mini-series based on Stephen Ambrose' book of the same title. Spike TV was showing it on Labor Day weekend and we watched the first few episodes via TiVo. Well, we also own the DVD set so we slapped the next episode into the DVD player and continued enjoying the story last night.
Overall, a good day.
Monday, September 7, 2009
My sister found this great video
And, the dogs in this clip are beagles, a breed that Mary knows very well from her dog breeding days. Our Houdini dog has nothing on the beagle in this video.
Devil Dog Escapes!
When we got Devil Dog from Mary's son and granddaughter, the dog had been conditioned to sleep in a crate. We thought that was an excellent idea and have continued crate sleeping ever since.
We also think Shauna (and the late Wolfie too) appreciated the quiet hours when Devil Dog was locked away and not able to be a fully intolerable puppy. Shauna is free to wander the house all night, although she simply curls up in her dog bed in our bedroom and sleeps soundly.
One of Devil Dog's behaviors is that she likes to attack Shauna's ear--sort of like Kato would attack Inspector Clouseau in the old Pink Panther movies. At any time, Devil Dog will charge Shauna and nuzzle her ear. Its especially fun to watch as Shauna is running away and Devil Dog holds position with her nose in the ear. Turns out Devil Dog can run sideways faster than Shauna can run straight! Shauna, bless her soul, has not implemented the obvious dog discipline move. Drawing blood usually causes the attacker to stop the objectionable behavior, and Shauna has not invoked that solution.
Back to the crate. Our bedtime routine consists of me taking Devil Dog out to the dog run for a night run. Then, its time for a cookie midnight snack--for the dog! A dog cookie! Devil Dog runs to her crate expectantly waiting for her cookie. After I give it to her, I secure the latch on the front of the crate and turn out the lights. Devil Dog sleeps quietly, and we assume comfortably, until we let her out in the morning. This has been the routine since Devil Dog arrived in our house. And, this is how I put her to bed on Sunday evening. I am absolutely certain of that.
We have no explanation as to how Houdini Dog appeared bedside this morning at 7AM, barking loudly for her breakfast.
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| From 2009-01-31 Garden |
We also think Shauna (and the late Wolfie too) appreciated the quiet hours when Devil Dog was locked away and not able to be a fully intolerable puppy. Shauna is free to wander the house all night, although she simply curls up in her dog bed in our bedroom and sleeps soundly.
One of Devil Dog's behaviors is that she likes to attack Shauna's ear--sort of like Kato would attack Inspector Clouseau in the old Pink Panther movies. At any time, Devil Dog will charge Shauna and nuzzle her ear. Its especially fun to watch as Shauna is running away and Devil Dog holds position with her nose in the ear. Turns out Devil Dog can run sideways faster than Shauna can run straight! Shauna, bless her soul, has not implemented the obvious dog discipline move. Drawing blood usually causes the attacker to stop the objectionable behavior, and Shauna has not invoked that solution.
Back to the crate. Our bedtime routine consists of me taking Devil Dog out to the dog run for a night run. Then, its time for a cookie midnight snack--for the dog! A dog cookie! Devil Dog runs to her crate expectantly waiting for her cookie. After I give it to her, I secure the latch on the front of the crate and turn out the lights. Devil Dog sleeps quietly, and we assume comfortably, until we let her out in the morning. This has been the routine since Devil Dog arrived in our house. And, this is how I put her to bed on Sunday evening. I am absolutely certain of that.
We have no explanation as to how Houdini Dog appeared bedside this morning at 7AM, barking loudly for her breakfast.
Sunday, September 6, 2009
Sunday Evening
Reenie sent these pictures today of a pleasant Labor Day weekend in northern Minnesota. They had a celebration meal with her son Colin for a promotion he had received at work. Otherwise, they have had and are having a quiet end of summer weekend.
Mary and I joined MaryR at the Purple Onion after we did a stroll through Farmers' Market where we picked up veggies, fruit, fresh tuna and fresh halibut. Overall, Mary is improving each day, has lost another pound of fluids but is not always at the top of her game. This recovery is definitely positive but it isn't absolute progress all the time. We didn't see Ingrid today, too busy, but we hope to see her next weekend.
Mary's granddaughter, Charlize, and son, Tim, arrive Thursday evening this coming week. We have two full days with them and Sunday they head back to Tucson.
Also, our friend, Ute, will come for a visit on Sunday. Ute and Joki were married last November which caused me to fly from Hawaii to Berlin to attend the wedding. You may recall that Mary joined me when I changed planes in San Francisco. The wedding was located between Berlin and Dresen so we had a very nice visit as part of the wedding events! I wrote about Thomas, Susan and Joki visiting back in July. Now Ute gets to stop in and see Mary.
Monday is the Labor Day holiday here in the USA. We plan another quiet day and we'll be cooking the halibut. I did the tuna tonight with a baked potato and sugar snap peas.
Dick Dryden's 80th Birthday
Click on the pictures to start the show or click on the icon in the lower right corner to visit our web album.
Dick Dryden had his big eight zero birthday yesterday. Mary was feeling strong enough to attend and they had a lovely outdoor party in their beautiful backyard. It was good to see the gang again, even if Arnie and his wife appeared late in the evening as Mary and I left to head home. To be fair, Arnie's wife fell at Pruneyard Shopping Center and they had spent most of the party time in the emergency room.
Idjit Dawg
Idjit Dawg was underfoot yesterday as I was folding and putting away the laundry (yes, this IS Pat writing.) Apparently, I dropped one of Mary's hospital socks and it landed on Idjit Dawg. And, it stayed there long enough for me to snap a few pictures. Apparently, the dawg never felt it. ID is such a supply of laughs...
Friday, September 4, 2009
Not since May 10th
Mary did the drive to Stanford with no difficulties. She called me when she got home just to let me know she was home and feeling ok.
What came out was a bit different. During the course of our conversation Mary said she was feeling very good, in fact, "I haven't felt this good since May 10, the day before the liver surgery." Double hooray!!
I had a suspicion she was feeling better. This morning while preparing breakfast, Mary told me she had lost a little more than one pound.
My comment was, "In addition to your salt management, perhaps your liver size is very close to balance with your body's fluid production. After all, we know you have a really tough liver given everything its been through."
Mary's response surprised me, "I am the tough one, not my liver. Its part of the package but I am the tough one."
Hey, she's baaaccckkkk!!!
A collection of thoughts
The first is humor because its too good to pass up.
Click on this website. This is so good, even Judge Mary asked that I post it. For those who have forgotten, Mary was the Chief Administrative Law Judge for the State of Arizona in the Department of Real Estate.
Mary news:
Mary reports our home scale shows more than a pound weight loss. Now, that isn't much but it is certainly better than no change or gaining more weight. Yeah!!! The hepatologist asked her to limit her salt intake to 2,000 mg per day and Mary is attacking that with a vengeance. We have charts, graphs, reference books, computer internet connection, weigh scales and a log book active in the kitchen. Last night's total for the day was 1,200 mg so Mary agreed to an after dinner--but small--dish of ice cream. I had to read labels to find the one with the least sodium content but we found what she wanted.
Mary is also feeling good enough that she is heading to Stanford today alone. She has been out and about driving in Los Gatos and the trip to Stanford is truly a simple drive, albeit a touch longer than going to LG. Its four turns to get on the freeway (Hwy 85), one freeway to freeway interchange (I-280), one freeway exit (Sand Hill) and then three turns into the parking garage at Stanford. Very simple, she should be more than ok.
Other News:
Bill is likely to come home today with his newly inserted stent. We certainly hope his recovery is quick and any discomfort is minor. Go Bill!
I am on the 24 hour heart monitor and I get to rip it off at noontime when the 24 hours is done. Yeah!! Its really not a big deal EXCEPT they wouldn't let me take a shower. I feel inhuman.
My next door neighbor reports the deer are getting pretty bold down in the creek. Tim reports, "Last week, I stayed home a couple days...and just after lunch my son and I found a large buck sleeping up against the creekside fence; he awoke shortly after and walked off once he realized we were in the area. That creek comes alive at night, though; if you shine a bright light down there well after dark, lots of eyes looking back at you."
Yeah, we had one of those sets of eyes in the garage trying to eat the dog food supply earlier this week. I didn't report it then because Comcast was on the top of my mind. One evening, I put Mary to bed and went out to the TV room to do a little email. I heard a loud noise like Idjit Dawg had just pulled over a trash can or something but as is a guy's prerogative, I continued to work on my email (which probably looked to the casual observer like I was sleeping). I then heard a really large metallic noise and thought, "Ah ha! Idjit Dawg is attacking the large trash can in the utility room." At that point I stood up and nearly crushed Idjit Dawg who was sound asleep at my feet. So too was Shauna. OK, plan B! I realized the noise was much closer and likely from the garage. So I opened the door into the garage and found one of our two dog food storage cans had fallen from the shelf and was rolling around on the floor with the top removed. I never did see the creature but if it had been skunk, I would have smelled it. I am assuming raccoon. We now make sure the big garage door is closed at dusk.
Recovery is not routine?!?
The chemistry of the human body is in abject rebellion to the tendency
of its surroundings. Hot begets cooling. Cold begets warming. Input
begets pooling? Oh well, the body does as it will. At least it sounds
like a temporary set back and, Mary, you sound mobile. You know, when
you're moving, you are defying time. The faster you move, the more you
are removed from the current timeline. I always look upon this process
as the human spirit defying the iniquities of normal existence. But
then, I'm nuts!
of its surroundings. Hot begets cooling. Cold begets warming. Input
begets pooling? Oh well, the body does as it will. At least it sounds
like a temporary set back and, Mary, you sound mobile. You know, when
you're moving, you are defying time. The faster you move, the more you
are removed from the current timeline. I always look upon this process
as the human spirit defying the iniquities of normal existence. But
then, I'm nuts!
Love,
Milt
Thursday, September 3, 2009
The b-b-b-bbbbeat of a heart
OK, we have heart news today--not about Mary, she is fine although she is still stretched with the abdominal bloat. And, she told me she is definitely feeling better so perhaps she has turned the corner between regenerated liver capacity and the demand being placed by her body. All we can do it wait.
Hey, Bill's a guy! Seems rational to me that he didn't acknowledge the pain until it was very late. No Pain, No Gain! Well, Bill has gained a stent for his blocked heart vein.
I wrote a couple of days ago that one of our taxi team, Bill, went to the local hospital with a heart problem.
His Mom dropped me a note last night: "Saw Bill this evening. He was sitting up in bed and in good spirits. We took him a large decaf coffee because the hospital decaf was SO awful--I tasted it. He has no pain, no arrythmia and his enzymes are coming down.
The dr visited him early this evening and told Bill his heart attack was not a little thing but very serious. I don't think Bill realized HOW serious it was."Hey, Bill's a guy! Seems rational to me that he didn't acknowledge the pain until it was very late. No Pain, No Gain! Well, Bill has gained a stent for his blocked heart vein.
Some of you may remember I had an episode about 5 weeks ago. I finally got in to see the specialist today. Did a stress test, she put me on a recording EKG monitor that will run for 24 hours, requested a blood work up in the next week or so and scheduled a follow up in 4 weeks. In other words, things are not perfect but there is no reason for panic. Oh, my symptoms? Irregular heartbeat. Consistent with my PVC diagnosis of 8 years ago which took caffeine out of my diet. The doc says that once everything is confirmed that I am fine, she will put me on an exercise and weight loss regimen. Frankly, I knew it was coming, its the right thing to do.
Finally, my heart specialist and I were chatting while I was on the treadmill--at the initial slow speeds, that is. I described Mary's diagnosis and her face went blank. I explained about the liver resection and the almost 6 full weeks of radiation and that she is on the road to recovery. The doc's response? "That is a miracle."
The technician running the computers and ultrasound looked quizzically at the doctor who responded with, "Cholangiocarcinoma is a deadly cancer. I have never heard of anyone living more than a month or so once they were diagnosed! His wife's situation is truly a miracle."
Wednesday, September 2, 2009
Breath easy
We saw the hepatologist about noon today.
All the tests: blood, ct scan, ultrasound, more blood, even more blood, etc. all came back nominal. No problems of any import.
The theory is the same. Her liver's capacity was reduced by the radiation and now that the radiation has stopped, her liver is regenerating. But, it is too small to process all of her bodily fluids. When that happens, it simply bypasses the fluids into the abdominal cavity--hence the bloating. (Think of a spillway on a power producing damn. When there is too much fluid, it flows over the spillway instead of the power generating system.)
Data point: The official Stanford scale showed her up 1 lb from last week instead of the 5 and 5 from the two prior weeks. Part of that is the diuretics, part is the liver catching up with the body's needs.
So, now she is on a low sodium diet (and weekly blood tests for electrolyte balance) and was asked to add Boost to her diet. Her albumin is low indicative of too little protein in her food intake. Heck, I think she has too little food intake of any kind but her appetite is increasing.
Smile, breath, she continues to heal.
All the tests: blood, ct scan, ultrasound, more blood, even more blood, etc. all came back nominal. No problems of any import.
The theory is the same. Her liver's capacity was reduced by the radiation and now that the radiation has stopped, her liver is regenerating. But, it is too small to process all of her bodily fluids. When that happens, it simply bypasses the fluids into the abdominal cavity--hence the bloating. (Think of a spillway on a power producing damn. When there is too much fluid, it flows over the spillway instead of the power generating system.)
Data point: The official Stanford scale showed her up 1 lb from last week instead of the 5 and 5 from the two prior weeks. Part of that is the diuretics, part is the liver catching up with the body's needs.
So, now she is on a low sodium diet (and weekly blood tests for electrolyte balance) and was asked to add Boost to her diet. Her albumin is low indicative of too little protein in her food intake. Heck, I think she has too little food intake of any kind but her appetite is increasing.
Smile, breath, she continues to heal.
Tuesday, September 1, 2009
Back to Stanford on Wednesday
The hepatologist's office called today and we are seeing the doc at 11AM on Wednesday. Frankly, this spooked Mary a bit. The only other time they have called us in for a next day appointment was when they confirmed cholangiocarcinoma after the gall bladder surgery.
I told her it was more likely that the surgeon put a priority on it and now that all the test results including Monday's blood work was done, she simply wanted to see Mary right away. I feel this is better than waiting a few more days. We really need to understand what is happening to make Mary bloat and retain fluids.
Mary is on two diuretics prescribed last Friday, her bp medication and her glaucoma drops. Oh, and protonix for stomach acid prevention--by now, she may be able to terminate that as well. She is off of everything else that has been prescribed since this all began. That is good news.
Mary did make the trip downtown, had her hair done and made it back without a problem. Well, except she left a shirt jacket at the salon. We will pick it up in the AM.
I told her it was more likely that the surgeon put a priority on it and now that all the test results including Monday's blood work was done, she simply wanted to see Mary right away. I feel this is better than waiting a few more days. We really need to understand what is happening to make Mary bloat and retain fluids.
Mary is on two diuretics prescribed last Friday, her bp medication and her glaucoma drops. Oh, and protonix for stomach acid prevention--by now, she may be able to terminate that as well. She is off of everything else that has been prescribed since this all began. That is good news.
Mary did make the trip downtown, had her hair done and made it back without a problem. Well, except she left a shirt jacket at the salon. We will pick it up in the AM.
One of Mary's taxi drivers...
Bill is in the hospital because of a heart attack. Bill is a neighbor and a great one at that! Always willing to help and also willing to ask for help. He is a super guy and we hope the docs can fix him up and get him on his way.
It never figures, does it. He is younger than me by a few years, slender, is always doing a lot of outdoorsy manual labor kind of stuff, drives this wonderful ancient Ford Bronco and typically takes the fall months to go hunting in various states all across the USA. If there is anyone who doesn't fit the profile, I would think it is Bill.
We wish Bill all the best in this time of need.
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