Everything has been pretty much status quo for most of the last week. Hospice came yesterday to take baseline vitals and other basic info on mom. I think today they come to go over meds. Mom's been feeling quite well the last 4-5 days and only yesterday really hit the wall. She doesn't tend to take it easy when she's feeling well so after a few days of feeling well she crashes. I stopped by yesterday to find a completely zombie exhausted mom in the kitchen making homemade baked macaroni. I'm telling you the woman does not have a pause button. There is no stopping her.

Thank you for all the emails and offers for food, etc. They are appreciated. I haven't had time to reply to all of them yet but I will get to you. I am keeping a list of volunteers for things such as meals so when the time comes when they would be most useful I'll let you know.

Mom still is not up for visits and phone calls. She really is tired of the questions and talking about nothing but how she's feeling and what's going on. Although there's not much else to talk about, if you're one of the lucky few who manage a visit over the coming months, do her a favor and talk about something else.

Thanks again for all the love and support from everyone.

Birthday

Mom had her birthday on the 8th, same day Hospice came out for the first time. Pretty shitty birthday present if you ask me. She woke up feeling pretty well on Saturday and decided she wanted to go out to dinner with all of us. I've always told her about just how good the calamari, sand dabs, and Prime Rib are at the Golden Tee at Monterey Airport. So, off we went to Monterey Airport for what I realized will probably be her final birthday celebration. 62 years young, three kids, a nice home, it's been a great 62 years for her. She had fun at dinner, didn't eat much (Matt and Lexi brought her her favorite Myo frozen yogurt earlier as a present) but she did enjoy herself and I think the calamari lived up to her expectations. When you're facing what she's facing I guess it doesn't really matter what you do or where you do it, it just matters you are surrounded by those who love you the most.

Happy Birthday mom.

The Final Stage

In the back of my mind, when she was having trouble taking a deep breath, I feared the worst. An X-ray and a CT scan confirmed my worries. "The cancer has spread to the lungs" hit like a ton of bricks when it came out of Dr. Stampleman's mouth.

Just a couple days ago at Stanford, Dr. Koong was talking about how remarkable mom has been and how he dare not cite statistics since she hadn't followed any of them anyway. Mom was put at the top of a list for a clinical trial through Stanford which sounded promising, if only a bit. It wouldn't start for another six months, and she'd have to maintain her weight and activity level, but it gave her hope and put a smile on her face. This was before metastasis. It's the one thing we all knew would come eventually, and frankly should have come two years ago.

Just yesterday we met with a representative from Hospice at the house. Mom wanted to just hear what they had to offer for when the time came. I have a feeling deep down she knew the time was now. Today the doctor's office will make the call to Hospice and mom will start her at home care. No more chemotherapy, just a big dose of acceptance. I think it's the first time I've shed a tear in a doctors office through this whole ordeal. The writing has been on the wall for months. She's had some really bad days, but then all of a sudden she's having a couple great days and you go back to thinking foolishly that she may just make it.

I don't know how long someone with metastasized pancreatic cancer can last without chemotherapy. I would venture to guess not long. It blows my mind how well she's done and how long she's persevered. Our mission now is to make her as comfortable as possible. Any time I have even an ounce of hesitation to do something for her or lose my patience in dealing with her issues, I think back to what she has done for me over the past 36 years and for Matt for the past 22, and Lexi for the past 17 years, and I realize there is no burden I could bear for her big enough to ever come close to what she has done for us.

Tomorrow the next chapter begins. Hospice. For what it's worth, mom seems very at peace with it all. She has been a part of the decision making and she's had final say in them all. She is tired and I think she is ready to be done fighting. We are all happy to know she is in no pain at all and we're told she will be pain free for the duration. The rest of us are another story. The real pain, I fear, is only just beginning. I realize we, her family, are not the only ones affected by this. I know there are many of you who would like to come say hi and give her hugs and prayers. I don't know how she is going to feel over the coming days and weeks. I would ask that if you would like to visit, please email me at mark_sweeney@me.com and I'll see what I can do. No promises though.

Long overdue, is a giant thank you and words of appreciation to my sister Lexi who has been absolutely remarkable especially over the last year. Her patience and attention to mom has been key to her care and comfort. It's a job no 17 year old should have to do but she stepped up to the plate and handled it as best she could. She has more character and integrity than most people I know. It's hard to put into words my appreciation for what she has done especially in the times the rest of us couldn't be there. I've watched her grow up faster than any young woman should need to and become an amazing person. It's been a true trial by fire for her. Lexi, you are amazing, strong just like mom, and I love you.

Mama meets Zadie

Mom's been feeling good for the most part lately. We are having a second visit from her side of the family Christmas day through New Years day. It will be much like the 2008 visit to the rental house in La Selva Beach only this year we'll be renting a house in Carmel Highlands. She is very excited for the visit.

A few days ago my long time good friend Isaiah brought his new daughter Zadie down from San Jose to meet mom and so Isaiah could see mom. You can see the pictures here.

Here's one of them:

Mom hasn't been feeling very well the last few days. She had a check up with the oncologist a few days ago and her scans she had recently came back showing and increase in the size of her tumor with no metastasis still. This was to be expected; she has been off her chemo for about five weeks in an effort to heal from the symptoms the last round gave her.

She is now back on a reduced dose of the chemo she was previously on.

Her recent labs show an increase in Ammonia levels which certainly have something to do with her feeling crummy and mentation deficiencies. She hasn't been sleeping well either.

Working on scheduling another appointment at stanford with the radiation oncologist and either a nephrologist or heptologist, I think.

I'm hoping this is just a bad few days. Mom doesn't seem very optimistic but she's certainly allowed to feel down from time to time.

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.