Feeling better

Mom is off her chemo for a while. Looks like at least several more weeks. The toxicity of the chemo she had been on was catching up to her and making things a bit miserable. The biggest side effect was to her feet which I won't go into again since I wrote about it a couple posts ago. Since coming off the chemo she's had rapid improvement in her feet and hand and of course she is getting around much better. She still tires quickly but her spirits seem to be higher. I think just maybe I'm seeing some improvement in her mentation as well, if only a bit.

On another note, she had a run in with the wonderful California Highway Patrol a few nights ago when she was pulled over under suspicion of DUI. Apparently there was a bit of swerving going on but the stories I've heard from both sides don't exactly match up, so who knows. She was given the full gamut of field sobriety tests along with a breathalyzer which of course she passed in their entirety. After a bit the CHP officer found out what I did for a living and apparently his tune changed a bit and I got what could only be classified as a professional courtesy in the form of a phone call from the officer. We talked for a while on the phone and his concern for her wellbeing and of course that of everyone else on the road was genuine. I answered his questions about what mom has been dealing with for the last 2+ years and explained chemo-brain to him (which I discovered recently is a very real thing and a term even used by doctors) and how yes, she could possibly come across as impaired to someone who doesn't know her or to someone who has a career based around just generally assuming everyone is guilty of something. Okay, I didn't say the last part, but I would have liked to. In the end, after a phone call to his sergeant she was left to go on her way, distraught and frustrated, but free. The officer and I did agree perhaps the time has come for mom to not be driving, if only temporary. So, everyone knows she doesn't know how to ask for help, right? If you should feel so inclined, now would be a good time to throw out offers for rides to the grocery store, Costco, etc. When I'm around I take her, as we did today to the grocery store. And Lexi is around too, but who knows, she may need a lift from time to time.

Now, as far as her cancer goes, according to the wise oncologists, everything still seems to be holding steady. It's not appearing to get any worse or better. I know mom doesn't like being off the chemo because she's afraid the cancer will gain a foothold and make a run for it, but her body needed a break any way you look at it. It came down to the constant battle of treatment versus quality of life. So, for a while we are erring on the side of quality of life. She will be re-evaluated again soon to see how things are going after being off the chemo for a bit and will possibly be put back on a different chemo of a reduced dose of the one she just came off.

On a happy note we are planning another Christmas time visit from mom's side of the family just like we did a couple years ago in La Selva. This year we'll be renting a 3000+ square foot house for the week up in the Carmel Highlands. It will be nice being a little closer to home this time. We are all very excited. Last time was a blast.

Mom's out

I showed up today to run into mom getting out of a family friends car coming home from a wedding. So good to see her up and about even if she did have her special little shoe on. She looked great. She was dressed up in what must have been a new dress. Actually I guess all her clothes are new since none of the clothes from a couple years ago fit. She looked great. In fact I haven't seen her looking so good in a long time, it was a little odd actually, but great to see. Her feet are healing up very quickly now since she has stopped the chemo. I haven't seen her walking so well in weeks. Made me very happy to see.

We go to Stanford this coming Thursday so hopefully there is some good news.

A quick update.
Mom is going to be taken off her chemo due to the rapidly declining condition of her feet. That's right. She has been having big problems with her feet and wounds on them. The skin has been cracking and splitting. It's very bad to the point where she can barely walk anymore. I think she's going to be getting a wheelchair for the time being. She is seeing wound care specialists and we will get her up to Stanford as soon as possible to get their opinion and see what the next step is in her treatment. Of course she hates being off her chemo and has been very scared each time something has happened resulting in a treatment change. She feels the chemo is the only thing keeping it in check. I'll try to update when I know more.

Closing a door

They say when one door closes another opens. This week has been a tough week for any of us to accept that logic. After 20 some odd years at Salinas Valley Memorial Hospital, at a career mom loved, she's been laid off. It's hard to believe. She had a great run there and she has so many great friends she's made. She started as a nurse recruiter years ago and later took over all of the leaves of absence. Anyone in the hospital who has ever gone on leave for maternity, extended sickness, etc., has gone through mom. She's met a tremendous amount of great people there.

She accepted long ago the hospital was being generous keeping her on two days a week. They more or less made a spot for her as she was unable to do the full time job managing personnel's leave. I know she will miss her job and be missed by the other employees. She only one of many being cut in these tough times at the hospital.

In the mean time, she'll have 8 months of Cobra coverage for her health insurance reimbursed by the hospital, then she'll be on her own to cover it. Spending is going to tighten up for a while.

All in all she is in good spirits about the whole thing and says we will get through it. We will. We all know how tough and resilient she is.

She has asked for people not to call right now as she just needs some time to herself to sort things out and get back on track. The exception of course being if you would like to bring her a meal by. Those have always been appreciated.

Oh, by the way, the 14th was her two year anniversary of her diagnosis.

All the prayers you can send are always appreciated.

Thank you for everyones continuous support in the past and in the future

M

Rock-N-Water

I took mom up to see Matt & Lexi in Coloma at Rock N Water, the camp where they river guide in the summers. Coloma is up in the Sierra foothills east of Sacramento and on the south fork of the American River. It was a great weekend and very warm. We relaxed and hung out by the river, ran errands for Lexi and shared a couple great meals with the camp staff who we've all become close to over the last seven or so years. Craig and Mia, the husband and wife team who run the camp are always so gracious and they love mom. It was far too short but a very nice visit nonetheless.

Mom trying to explain to Lexi how to do laundry. All is well that ends well.



Lexi and that dreaded washing machine




Nothing like a good laundry mat photo.Mom, Haley, Linnea, Lexi



Momma T as the girls call her. I like it.




Sunday camp dinner at Rock N Water




Haley, Lexi, Mom, Linnea




Mom and Canyon

Portraits

It has been a long time coming that I get some great images of mom and Lexi. I have wanted to do this for quite a while now. Nat pointed out that I don't have any pictures of mom up on my bookshelf along with the rest of them. What kind of son am I? It never dawned on me. Problem solved. A couple weeks ago we picked a day for them to set aside so we could get some nice pictures of them together. We had a great time filled with laughter. I will always cherish these pictures. They are some of my favorite I have made yet. More will be posted once I get editing done.

Holding

Just a quick update since it's been a while.

We all recently went up to S.F. to see the King Tut exhibit. Mom has been asking to go since before Christmas, so we all crammed into Jake's SUV and took a sardine squished ride up to the city for the night. The exhibit was great and mom enjoyed it. It was nice to spend a couple days with the family, including Matt who had come up from school. We got a wheelchair for mom, which was difficult to see but it was good for her and she just doesn't have the energy to be up on her feet all day long in a crowded museum.

Other than that we are just in a bit of a holding pattern waiting to see what's next. There has been very little change. I'll update when things change.

Keep the prayers coming

Anticancer

I just finished reading Anticancer by David Servan-Schreiber, MD, PhD.

The book isn't a feel good book about living with cancer, it is about the foods and lifestyle that contribute to the high cancer rates in the western world and ways to counter them. It went into great detail about how the typical western diet is the perfect formula to promote production and growth of a tumor and the ways this diet, high in sugars and meat and veggies pumped full of hormones and pesticides, are the perfect recipe to cultivate a tumor. The book was very well written by a doctor of western medicine. He shines the light on the power of the pharmacuticle companies and points out what should be obvious, that there is little to no money to be made by the "health care" industry by recommending you eat healthy organic produce and meats. The money is to be made on treatments and drugs. Anyways, it opened my eyes to the realities of the foods most of us eat on a daily basis and the metabolic and biological effects they have on our bodies in relation to cancer. Ever wonder why we have such escalated cancer rates in this country? Check out the book, it will shed some light at the very least and maybe have you re-examining what your putting in your body. It's got me shopping a lot differently.

Of course I'll be sharing this info with mom and urging her to take some of these steps. At this point she's got nothing to lose and everything to gain.

We'll be heading to Stanford on Tuesday to see a heptologist and I'll update again after the visit.

Bottom of the Ninth

Today was mom's much anticipated appointment at Stanford oncology with the amazing Dr. Albert Koong.

Before I get into that I'll back up about a week.

At her last appointment at her medical oncologist she went over her latest PET scan and it was found that fortunately no metastasis was showing up and unfortunately she has a cirrhotic liver. Mom has been off her chemo for at least a month or more. There was an episode a few weeks back when she was very confused due to elevated ammonia levels. It was determined the elevated levels were likely due to some amount of liver damage. The local oncologist basically sent mom on her way saying there was nothing else she could do for her. We have all been terribly disappointed in this local doctor as well as her office as a whole. I have never seen an office of any type run so inefficiently.

So...off to Stanford

Our nurse Gillian and the doctor, Dr. Koong, have been absolutely amazing through this entire process. Every step of the way mom has been treated with every bit of respect and dignity she deserves. Today was no different. Along for the ride today was also Jake and Lexi. This was Lexi's first trip up to Stanford.

I think we were all a bit nervous heading up to this appointment and what it might hold. Mom has active cancer, a cirrhotic liver, and is off her chemo. Can this possibly lead to anything good? It's been a hell of a week for all of us.

Down to the nitty gritty.

Mom's liver is severely cirrhotic and probably not far from failure. This is why she was taken off the chemo some time ago. The concern about taking her off the chemo is that it is likely holding the cancer at bay. So, it's a bit of a catch 22. Leave her on the chemo to destroy the cancer and the liver gets destroyed. Take her off the chemo to save the liver and the cancer is free to do as it wishes. According to the doctor the best thing we could hope for at this point was that mom has some type of hepatitis which would be causing the liver problems. Unfortunately according to the labs back this morning, that isn't the case. This means that the liver cirrhosis is related to the disease. Whether the cirrhosis is being caused by disease progression or simply by the chemotherapy is yet to be definitively determined. When talking to the doctor, if I recall, he seems to think it is more likely from progression. Of course the chemo she's been on is known to cause liver problems, I don't think it is very common. Nothing about this cancer has been common though, so who knows.

Also back from the lab is that her CA19-9 level is now at 262 from 98.

Her most recent PET does not show that the tumor has necessarily increased in size or activity. The information is somewhat contradictory in that the CA19-9 level has increased but the scans are not showing an increase in activity or size. It seemed to have even the doctor a little puzzled.

So what's next? On monday, she will have her ascites drained again and this time will be tested at cytology for malignant cells. This would be a definitive sign of disease progression. She has been referred to a Stanford liver specialist who has an interest in hepatic issues around cancer. For now we wait for the paracentesis result, which may take a week or more, and the meeting with hepatology.

To quote Dr. Koong, "We are in the bottom of the ninth, and the relief pitcher is coming in, but the game isn't over yet."

We continue to hold out hope. Your continued prayers, notes, emails, facebook posts, phone calls, and meals are very much appreciated by the whole family. Those of you who have left messages, they aren't being ignored, sometimes mom's just too exhausted, tired of talking about it, or just plain tired of the phone. She knows your calling though and gets ever message, so don't stop.

Thanks for all of the support.

M

In the clear

A very brief post:

Mom had a doctor appointment today and the test results from the fluid draw came back negative for malignant cells. This is huge news and very good news as well. This means there is still no spread of the cancer.

Doing well

Mom had a doctor appointment today. Jake and I went with her. Overall the report was great. The best news is that her CA-19 count is down some more. It went from 312 at the last check to 118 now. That's a very significant improvement. The normal range for a healthy person is 0-35. At one point the count was in the 900's so 118 is amazing. This was outstanding news and very relieving.

Mom also had the fluid previously mention drained today. They took out 2.5L. That seems like a lot. She is much more comfortable now. They will run tests on the fluid to check for any malignant cells which would be an indication of less effectiveness by the chemo. With the news of the CA-19 level dropping, it seems that shouldn't be too big of a concern.

She had a minor fall the other night, likely due to poor balance from a sleeping pill. No injury other than a bumped up tail bone.

The doc agreed with Jake and I that she does need to be careful to moderate her activity level more. She's been overdoing it a bit lately and going till she crashes. Mom agreed that she needs to work on it more. Nobody wants her to sit around in bed all day, but some moderation would be good. We just want to see her get healthy.

A good day and good news.

I made some changes to reflect the color of the Pancreatic Cancer Action Network of purple

Swelling & Hernia

Since the last update, which I can't believe was in October (the last few month have been crazy for me with no end in sight, with some very exciting stuff going on), mom's hernia has worsened. Much of this likely has to do with the fact that she still has not learned how to say "no". I had to remind her just yesterday that she still does in fact have cancer. She said that she is in denial. At least she recognizes that. I can see that it is very true. She has been blessed all along with being able to remain at work a couple days a week and has generally remained very active. She does way too much. It's just who she is. I see her in me a lot because I'm the same way. I never know how to tell people "no" and I often burn the candle at both ends. I get it from her, no doubt. I've talked to her once and I'll talk to her again about the fact that she really needs to chill this Christmas and not over do it.

In addition to the hernia worsening it looks like the swelling and fluid build up is getting worse as well. I talked about the fluid in the last post. She may be needing to get it drained soon. In the evening she almost looks pregnant there is so much buildup. I'll spare her the embarrassment of posting the pictures we just took to send to Stanford.

She meets with her oncologist on Friday so if there is news I will update.

Randomly I did a Google search on mom and found:

she is on a prayer list at her old church

turned up on Classmates.com

found the obituaries for my beloved grandmother. They are about 11 & 12 up from the bottom (Mary M. Bond)

and of course her FaceBook page

Update Overdue

Well when we went to Stanford I took down some notes as I always do, and wouldn't you know it, I can't find them. For what it's worth, there really isn't a whole lot of change. The CA-19 count is down in the 400's again which is awesome. The tumor, on some scan, appeared to be larger, but the metabolic activity of it has not increased. My understanding is that the apparent increase in size could just be scar tissue or something similar. She has a fluid build up around her liver. It doesn't sound like anything to be overly alarmed about at this point. I may be drained in the future if it presents an issue. It may be caused by something as simple as not having enough protein in her diet, which apparently may allow excess fluid from the blood vessels out because the molecular structure is actually smaller than normal and is therefore allowed to slip out of the vessels and into the interstitial fluid area. Or something like. This is all of the top of my head from two weeks ago, so I get a little slack here. The other possible cause of the fluid build up may be simply that the ducts from the area of swelling are simple pinched/clogged/blocked by something, possibly the tumor. Let me see if I can remember from anatomy class... Basically you organs are surrounded by a very thin sack. On your heart it's called the pericardium I think (I may be way off here, I'm sure my heavily overeducated, overachieving East coast family will correct where needed). Anyways, between the given organ, in this case her liver, and the "sack", there is a layer of viscous fluid. This fluid is basically lubrication so that the layers don't rub together. I'm sure there is much more to it than that, but I'd have to turn all the way around to get to my old books, it's too late, and it's really not an anatomy lesson. So, you get the point. The fluid in this layer is generated on a regular basis. As it is made, the old stuff needs to get drained and done away with. If it doesn't drain away, it just pools up because your body keeps making the new fluid. For now it isn't a problem with mom. They could drain it but that doesn't fix the underlying issue it only relieves the symptoms. For now it's not bothering her.

The other minor issue is a new abdominal hernia. Anyone who knows my mom knows that she would never let a little pancreatic cancer, or the plague for that matter, slow her down and keep her from doing everything she would otherwise normally be doing. The hernia is probably from doing a little too much and tearing part of her incision from her exploratory laparotomy she had when first diagnosed over a year ago. Of course there is nothing they can do about this and it should heal over time. It kinda goes without saying that it is really the least of her worries right now.

Other than all this, things are good. She continues to somehow go to work, clean the house, and everything else she always does. She is looking forward to Matt coming home this weekend and is excited about me getting ready to close on my first house.

Shameless plug time. If you are in the area, click here.

Thanks for all the continued prayer and support for mom. She appreciates it always.

Latest round

Mom had her latest round of IV chemo today at Dr. Stampleman's office. It doesn't seem like it's been three weeks since her last round in the hospital when we were all so humorously entertained. I had put in a request to the doc to get her all drugged up again so I could make my debut on YouTube, but it didn't work. They did give her the Benadryl again for the reaction and she pretty much just sat there and got some sleep while the infusion ran. It wasn't nearly as interesting as the last time. Sorry, no video again...but that's ok at least I don't have to sleep (not) in a hospital again while mom wanders around the room babbling like a 30 year person of the streets.

Dr. Stampleman did stop by to update us on her latest round of scans and she basically said that we are continuing to move in the right directions. One scan showed that there is no change in the size of the mass, and it actually may appear to be bigger due to scar tissue and inflammation. The other scan showed that the activity of the tumor has continued to decrease. That is the good news. So we continue to move forward one week at a time. There continues to be no metastasis.

She's home once again resting up and I'm sure she'll be feeling good again in a couple days. She is also still working. She's a tough one!

Thanks again for all of you kind comments on the previous posts, she does read them.

Mark

Mom's doing well. Went shopping for clothes that will fit her the other day and was having a bit of a hard time finding things I think. Her sister Nancy is in town again and they had some nice time spent together. Mom has been feeling pretty well still and seems to have quite a bit of energy lately and has been eating fairly well. She will have another round of chemo next Friday so I'll update after that.

Good News

Mom received some good news today at her doctors visit. Apparently her CA-19 count is back down to the 400's from the 900's. She started a new chemo a while back, you can read the details here. This is really amazing news and has mom very excited. She called me right away to share the great news. Now, this doesn't mean that she is in the clear yet. Normal CA-19 counts are down in the double digits. But, when the other chemo she was on stopped working, her count had gone from the 400's back up to the 900's, so in essence we're right back where we were when the other chemo stopped having it effectiveness. So this is great, it means that this new chemo is working and seems to be working well. As I wrote before, she may be able to have another round of radiation at Stanford if the chemo continues to be effective.

Please continue to keep her in your prayers. They are working.

Overnighter in the hospital

So mom spent the night in the hospital last night as a precaution after her chemo. It was an interesting night to say the least. To help avoid the reaction she had last time they gave her a dose of Benadryl and to help with anxiety they gave Ativan (Lorazepam). Well...the two combined, as my mom predicted, had some interesting effects on her. It's hard to put into words and you can count on a video next time (with mom's approval of course). She was babbling like she was drunk for hours on end and making absolutely no sense. At first it was a little extreme and Lexi was even a little scared and left pretty upset. By the time her infusion was done the affects were wearing off a little but there was certainly still some lingering loopyness (not a word, I know). Thankfully when Lexi came back later that night she was a little more with it. The three of us sat around laughing about how odd some of the stuff was that was coming out of her mouth. She would nod off and start waving around with her hands, calling the dog, looking for her sewing kit. Lexi was laughing so hard her stomach was starting to hurt. Mom would wake back up and start to laugh at herself and at Lex laughing. It was really pretty funny. Next time there will be video.

I spent the night in the room with her because she really needed constant monitoring just in case. She was up and down about every 20 minutes through most of the night and would wake up very confused. Her legs were very weak and I was worried about her having a fall and breaking something. She doesn't need that now. The nurse gave her another Ativan later in the night and she finally got a couple hours sleep. The night was uneventful for the most part and her care in the hospital, as always was wonderful. We left first thing in the morning.

Day at the hospital

Mom is at the hospital today to receive her chemo since last time she had complications. As I wrote before, the last time she had this chemo administered, when she came home she had some swelling in her mouth and a difficult time breathing. So, the doctors decided to keep her in the hospital this time while she gets her chemo. She may stay overnight for monitoring. I'll update when we have more info.

Quick update

As promised I am trying to make more regular updates even if they are small/short.

I walked into the house today on my way home from work to say hi to mom and I could see on her face that she was having a great day. I asked her how she was feeling and she exclaimed "Awesome!" It has been a long time since I have seen her like that. She told me that she has been scarfing down food too! This is great news if even only temporarily. She showed me the back of truffles, and plate full of cookies, and said she was going to go buy a pound of See's candy. It really doesn't matter what she eats as long as she is getting the calories. I think she was joking about the See's. She did eat a big dinner, the largest I've seen in a very long time.

Apparently, as she explained to me, there is about a ten day window between her IV chemo treatment when she feels good and has an appetite. She said she is enjoying that time right now. She seemed like a different person today, it was amazing and uplifting to see.

Update

First off I have to apologize to all of you out there who have been anxiously waiting for updates on mom. I'm making an attempt to update more often starting today. The updates may be short and not filled with a ton of information but I'll do what I can to make them happen a little more often.

She's been fairly stable in all areas for the most part. Mom is still working two days a week most weeks, which I think she enjoys and it's great that she's getting out of the house for a day. Her weight loss seems to have stabilized for now and she's been eating better in recent days. Still not enough for the weight gain she needs but maybe enough to slow down the loss. She is on a new chemo drug which is both oral and IV. It's supposed to work well on pancreatic cancer so we have our fingers crossed. I wrote about these drugs here

Her spirits seem to be doing pretty well too. Matt is off to Azuza Pacific for school and Lexi has started her Junior year at H.S.. Jake is back home now. Seems like life is just moving along. There really isn't a whole lot of news. I'll do my best to keep up on this a bit better from now on.