Relay For Life

In light of what my mom went through, I've decided to take on the role of Team Captain for my Relay For Life team at work. The Marina Professional Fire Fighter's Association will be participating in the Marina Relay For Life on July 16, 2011. I would love for you to sponsor me in this event. I'm trying to raise $1000 myself for this cause and I have a long way to go. I would appreciate any amount you can manage. In setting the example, I've made a donation of $100 myself to get the fundraising going.

Thank you ahead of time for your support now and over the past several years. Let's help others fight what took mom away.

If you would like to support me (and why wouldn't you?) you can make a donation online here or you can send a check or money order made out to the American Cancer Society to:

Mark Sweeney

820 Park Row, #509
Salinas, CA 93901

Thank you so much for your support!

Funeral Service

Mom touched so many lives. It was evidenced by the number of people who attended her service and braved the muddy graveside service in the rain. Although there were well over 300 people in attendance, I know there were many who, because of work or other commitments, were unable to make it. Luckily, the Church was gracious enough to record the audio portion of the service. There are a few songs mixed in with Lexi, Matt, and me paying tribute to our mom.

For those of you who were unable to attend, or just want to hear it again....

You may be prompted to download a program such as QuickTime to listen to this. Go for it, don't be scared it's just a little player from Apple and should work on your PC too.

Also if for some reason it doesn't load right the first time, just try refreshing your browser. I am on a Mac so if you're on a PC and/or you are having trouble accessing the audio, please let me know by email at mark_sweeney@me.com

Below is the slideshow that I shared at the service. It's cut out of the above audio so you don't hear the music twice. In the service it was right after I finished speaking. All of the music was written and performed by my sister Lexi.

For those of you not familiar with YouTube inner workings...if you click on the resolution numbers in the bottom bar, you will have other options, also if you click on the outward facing arrows on the bottom right corner, you will get a full screen show.

Thank you to everyone who surrounded our family with love and support over the past couple weeks. It's been a rough ride, and it's only just now starting to sink in.

~Mark

Services

First of all, thank you to everyone for the phone calls, email, Facebook messages, cookies, cold cuts, text messages and other outpourings of love from all.

My brother and sister are doing well and have been surrounded by their friends. Lexi is out now shopping for a dress for the funeral, which makes me sad to think about, but I am so amazed at how well she is holding up and how strong she has been.

These are the confirmed plans:

Thursday will be a viewing/visitation at Struve & Laporte, 41 W. San Luis St., Salinas, 93908 at 7:00pm-9:00pm

Friday at 11am will be a gravesite service/burial at the cemetery in Gonzales. Here is a map. All are welcome

This is where Jake's mother is buried. Mom was extremely fond of Helen and would be proud to be by her side. Mom has no other family from the area so she will be the first to be buried on the West coast.

Friday at 1pm will be a very casual church service and reception at Shoreline Church, at 2500 Garden Rd. Monterey, 93940

We look forward to hearing and sharing stories of mom and how she's touched so many lives.

We are asking that in lieu of flowers donations be made in mom's name to the cancer related fund of your choosing or Hospice of Monterey.

This info is now confirmed

Only the good die young

She was a good one. 62 years isn't enough but they were good years.

Mom finished her 2 1/2 year fight against pancreatic cancer early this morning.

Right in line with her wishes she died peacefully and pain free in the Westland House in Monterey, in the loving care of Hospice. She spent less than 24 hours there and I believe she was ready to go. She had come to a place of acceptance and she was comfortable. She was not afraid of death any more. I assured her yesterday when she was leaving the house for the final time that we would all be okay, and that if she was ready to stop fighting, and move on, that it was okay. She said, "Thank you, I appreciate that." She was ready and she knew it. Deep down I knew it was time too.

Lindsi and I visited her one last time last night around 10:30. She opened her eyes and said hi. I asked if she knew who I was and she said, "ya, Mark". I asked if she was in any pain and she said she was not and that she was comfortable.

Thank you to everyone who has been here for us over the last two years.

Because mom has so many loving friends and family we can't possible be in contact with everyone. For that reason, I will be posting details and a schedule of services, etc. when we know more details. I don't expect a service to take place until at least Wednesday or Thursday.

Check back here for details.

Mom's been struggling to keep on top of the pain for the last week or so. She's woken up a couple times in the middle of the night in pain. Hospice has her on an oral Morphine and a variety of other drugs to keep her comfortable. She's looking very frail as well. I think her weight has probably dropped a little, although there isn't really any left to lose.

Today a social worker is coming by from Hospice to assess her needs. We're wondering if it's almost time to check her into the Hospice house (which I can't remember the name of right now).

With all that said, the other day when I stopped by, she was spot cleaning the carpets. She said, "nobody wants to go out with a dirty house."

Tonight we have an early celebration for my brother's 23rd birthday. I hope mom has the energy to join us. I'm sure she'll be there either way. She's never let a lack of energy stop her from showing up to the party.

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.

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.

Optimism prevails

We were both privately worried and a bit nervous about the visit to Stanford today. We both kept it to ourselves until after the appointment.

Based on mom's recent tests in Salinas, her CA19-9 level was elevated from her last check up several month ago. What the numbers showed were that her cancer activity had decreased after a few month of chemo to very low levels but had since had a recurrence and increased again, although not back to the original levels. Dr. Koong said that it appears the Gemcitabine (chemo drug) had run its course and was no longer having as strong an effect on the tumor as it was before. This seems like bad news--increase in cancer cell, and decreased effectiveness--but this is when the first of the good news came. What we didn't know is that there is another chemo drug she can switch to now which has proven to be very effective. Xeloda and Oxaliplatin (combined, referred to as Xelox) are commonly used for colorectal cancer, but apparently they are very effective against pancreatic cancer as well. According to Dr. Koong, there is very recent info that has come out within the last few month from Europe that says Xelox may be even more effective against pancreatic cancer than the Gemcitabine is. Instead of being used as a secondary drug it may begin to be used as the primary drug. This means that although mom has run her course of Gemcitabine, the most effective drug may have not even been used on her yet. So, we will be looking into this Xelox and starting on a new regimen of this chemo. This is great news. They haven't even pulled out the "big gun" yet and the cancer is already knocked down and struggling to get up. This could come even closer to knocking it out. Further, the doctor said when she has gone through some treatment with the Xolox, she may even be able to get a little more radiation, helping to knock it out some more.

We were going up there with the expectation of exploring the option of clinical trials. We thought the Gemcitabine was the only chemo option and that we had exhausted the traditional, proven methods. This was a little tough on the nerves.

Nurse Gillian & Mom.

Both amzaing

The recent scan also shows that there is no metastasis (spreading to other organs or parts of the body) which is the best news of all. Mom has also been having increased back pain recently which is due to the recurrence of the cancer cells in the tumor. The option of having a celiac block will be looked at which would greatly reduce her pain levels. The doctor also told her that she isn't taking nearly enough Vicodin (we should all be so lucky!) to control her pain level at night. Mom has always been very pain tolerant and doesn't like popping too many pills. She takes one a night and Dr. Koong told her she could take up to eight a day. She doesn't get nearly enough quality sleep and she has been told that she needs to make that a priority, even if it is drug induced sleep. So, she will be taking two at bedtime and another two if she should wake up in pain. This is good news on the pain control front and should result in better sleep, raising her overall health, and helping her in this fight.

Talking weight loss & food.

Sushi!

The other big issue is her weight loss. Although she looks fantastic in comparison to a few years ago, she is down about 50 pounds. That is a bit too much. The problem is that she has been in excruciating pain every time she eats and therefore eats very small quantities of food. Her protein intake is way down and weight has dropped too much. When they to the celiac block, which will be done endoscopically, they will also take another look at her stomach to make sure there is still no ulcer. The bottom line is that she must eat more and get her weight up a little, or at the very least maintain where she is at now, in an effort to maintain overall health to better fight this off. The good news is that the list of food she can eat is long. She was told to eat all the sushi she wants (which we did for lunch). She'll be trying Mylanta before meals to see if it helps with the pain. It seemed to at lunch today.

So in summary:

Slight increase of cancer cells, but we're left with possibly an even better chemotherapy than before to continue the battle against it. This is awesome news.

Additional radiation is an option, which we didn't think was the case. More awesome.

More Vicodin. Pretty sweet on the pain control.

More food, and the option (read: M.D. order) to put some weight on. Sushi overload!!

Mom is super happy with the results of this visit, as she should be and as am I. It really was nothing but good news, when we were expecting less than good news.

I told Dr. Koong that I was sensing an overall vibe of optimism from him and wondered if I was right in my observation. Are we still in this fight? Have we not run out of options yet? Are we in a good place overall? When he answered me, I had a grin from ear to ear. He said that we was very optimistic still and that we still have some great weapons left in the fight.

A very happy mom thrilled by good news

I am absolutely overjoyed after this appointment and happy to report to you all the fantastic news. We are not in the clear yet, but there is certainly sun shining down through the trees.

My mom and the rest of the family thank all of you from the bottom of our hearts for the continued outpouring of support and prayers. We see that they are being answered and God is good. Thank you. Thank you. Thank you.

Mom, I love you and I'm so happy to see the smile on your face through all of this.

Celebrating life over some sushi with mom

Mom's Day

Take it as a very good sign that I have been so bad about keeping up on this blog. Actually I haven't been bad about it, there just hasn't been anything to wrotie about. Mom has continued to do well. She's keeping up on the chemo treatments and still working two days a week. She's been feeling about the same. She jokes about how none of her clothes fit, but I can see on her face that she's pretty happy about that. I know she'd trade her cancer for a few of the pounds back, but nonetheless I don't think she minds a bit of the weight loss. She continues to look great.

She and Lexi went up and spent the night last weekend in S.F. and saw a play. It sounded like they had a good time together.

We had what I consider to be the most important Mother's Day we have had to date. This is the first time in my life that I wasn't sure there would be another Mother's Day. I really cherished the fact that she is here to spend another one with us. My girlfriend Scarlett is in town for a week and I can see that they have enjoyed spending some time together finally. On Sunday Mom, Lexi, Scarlett and I went to church in the morning, which of course mom cried through after seeing Matt and Lexi on the big screen giving tribute to moms. Later that night I cooked up a big feast for the four of us at mom's house and Scarlett made some ridiculous brownies. After dinner we settled in for a movie. It was a quiet day. I'm so grateful and blessed to be able to spend another nice, quiet day with mom.

I'm so glad you're here mom.
Love You

Test results

Hello All,

The good news is it turned out not to be an ulcer. Between the Endoscopy and ultrasound, the diagnosis is what is called varicies. Varices are dilated veins in the distal esophagus or proximal stomach caused by elevated pressure in the portal venous system. In simple terms, from what I understand, the tumor is putting pressure on an artery. The body has its own defense mechanism to create smaller vessels to bypass this artery. As Roseanne Roseann Adana so eloquently said, "it's always something".
Thanks Mark for all your postings. You're a good son.

I'm so lucky

There hasn't been a whole lot to post about lately which I suppose is a good thing. I guess these would be about as interesting as anyone else's posts would be about their day to day happenings if it were updated more.

Mom continues to do miraculously well. She continues to work 16 hours a week and do all the other normal daily activities you're average healthy person would be doing.

The one thing I wanted to note here put a smile on my face just a couple days ago. I had stopped by the house for a few to say hi to mom and she started to tell me something. She told me about how she was listening to something on TV about Patrick Swayze who has the same type of cancer mom has. She said, "did you realize only 20% of Pancreatic Cancer patients make it through the first year?" "Yes" I said. "I am sooooo lucky" she beamed. Sure enough. I told her, "Scarlett's mom would say, 'There's no such thing as luck, it's all is God's plan.'" I like that.

We're not done with you yet mom!

We have so much to be thankful for this Easter season. Mom was diagnosed nine months ago and she's doing so well. We have so much to be thankful for. As we approach that one year mark, please continue to pray hard for her.

Mark

Update from Stanford

I am posting an email sent out by mom which does well to explain the results of her visit to Stanford. She came home very happy. I added to her good news with a little of my own with my announcement of being promoted to Fire Engineer at work.

"Hello All,
My trip to Stanford was a success by cancer standards. The cancer cells remain the same, which is good. It has not advanced. My CA 19-9, which is a marker, in the form of a blood test, is in the 90 range. Considering it was 248 in July, this is good. Abnormal is anything above 37. They are keeping me on Chemo since I seem to be responding well. Tell my tired body that.

I also have what they think is an ulcer. (my self diagnosis which they, my oncologist and the Dr. at Stanford, seem to agree.) Six months following radiation is the most likely time an ulcer will show it's nasty head. I will be having an Endoscopy as soon as it can be scheduled. If it is an ulcer, they say the discomfort will last for about 6 months and it will heal itself.

I will keep you all informed.

Lots of Love,
Lorraine"

New Tests and Update

Mom recently had a check up with a PET scan and MRI. The update was that nothing has changed since her last update. There is still no metastasis, however the tumor has not diminished any further. For now she will stop the chemo. Tomorrow she has an appointment at Stanford for another checkup with them. After that we will know more. It is sounding like we might be looking into clinical trials from here on. For now that is about all the news there is. I will update more when the time comes.

Thanks

I just want to take a second to thank all of you who have visited and left such nice comments on the blog. I've made sure to share them with my mom. She is doing well right now and appreciates the support so much.

On Friday I'll be heading out to Jacksonville to celebrate the life of Scarlett's dad Johnny. I hope to meet a few of you there.

Once again, thank you for all support for my mom and our family in these challenging time.

Mark

Normalcy returns

The holidays have come and gone and with it a dozen family members from the East coast. It was a great holiday season and one I am so grateful to have been able to spend with mom. Christmas week took a toll on her as it required a bit more energy, both physical and emotional, than usual. She's now had a chance to catch up on some much needed rest. Jake said that over the weekend she had great energy levels and was in very high spirits. Apparently she even skipped her nap (this is huge).
Incredibly mom has increased her two days a week at work from five hours to eight. This is amazing.
So an update in a nutshell...
Mom has pancreatic cancer.
Prognosis not good.
Mom has radiation and one lousy stay at Stanford.
Mom has a bunch of chemo.
Mom handles chemo very well.
Mom goes back to work a few hours a day twice a week.
Mom loses a healthy amount of weight and looks better than I can ever remember.
Family comes to town and lifts spirits.
Mom has check up.
Results are phenomenal with no metastasis and a reduction of cancer cells.
Mom is ordered to undergo three more months of chemo (because it's working).
Mom increases work hours (at a job she loves) to eight hours twice a week.

So, would you say things are going well or bad?
What we are witnessing here is nothing short of a miracle in the making.
She is kicking this things ass!
Keep it up mom, there is light at the end of the tunnel.

Going to California

At last Christmas came and with it twelve family members from mom's side from the East coast. On Christmas day they left freezing temps and snow and arrived to see the last of a mild California storm. They got to see big waves and dramatic skies. After that, the skies cleared and the rest of the week was some of the nicest weather I've seen in a while.

We (17 of us) had a house rented on La Selva Beach, near Aptos, for a week. Christmas Day through New Years Day. The food and drink were good and the company even better. My family doesn't see that side of the family more than once a year or so. It was a great chance to slow down and really spend some time with each other. The house was located such that it really forced you to relax. There were only a few things to do in the immediate area, and none of them sucked. Options such as walking the beach, taking a soak in the hot tub (on the deck with a view of the beach), catching up on a book, or just sitting enjoying a cold one were the fare of the week. It was perfect.
There were a few day trips to local spots. Some went to Monterey (there was an aquarium trip of course) and some to Santa Cruz and Capitola (Gabigola as it became know). Nancy Ann organized an on the beach horse back riding trip at Molera Beach.All in all it was an amazing week and it came to a close way too quick. I think mom had a great time. Tired at times, she really hung in there. I know she cherished the chance to catch up with her sister, brother, and nieces and nephews.
A great start to what is sure to be a much better year than the last.

Stanford Visit

Mom went to visit her radiation oncologist at Stanford today. She had a good visit and the news was great, all things considered. He was pleased with her PET scan and said that the amount of active cancer cells has diminished drastically. There has been no metastasis (spreading) in her body, which is probably the best news of all. She will through another three months of Chemo then be re-evaluated.
Of course she is not looking forward to another three months of chemo but realizes that she can do it and that it really is good news.
We are all looking forward to the family coming out from Boston on Christmas day for a week. There will be seventeen of us in a beach house on La Selva beach.

I will try to update from the house Christmas week.

Great News

Well, as one person put it, yes, no news has been good news. It's probably a good thing that there have been no updates for such a long time, although I realize all of you would like to know more about how mom is doing more frequently. My appologies, life just has a way of getting in the way.

Mom is doing very well lately. She continues to put in 10 hours a week at the hospital. I think that has been a very nice escape for her. I'm sure everyone in the office is glad to have her back, if only on a limited basis.

Chemo continues once a week and it has been going well. She comes home from treatment tired and I often find her sleeping on the couch when I stop by to visit. She hasn't been sleeping well lately but I think most of that has stemmed from nerves. She's been a bit apprehensive about upcoming test and the results they will yield. This lack of sleep has led to a bit more sleeping during the day. I think it's great that she gets sleep whenever she can as I'm sure that her body needs it and uses all that energy to help itself heal.

On Thursday she had a round of tests at the hospital including a PET scan. All of the news was for the most part positive. There has been no metastasis (spreading to other parts of the body) which to me is the best news we could have possibly hoped for. The mass on her pancreas is about the same size but the active cancer cells have diminished in size and number (that's how I understood it). All in all it was very good news and it sounds like the treatments are working as they should be.

Mom will continue with chemotherapy for now and on the 17th we will go to Stanford again for a checkup with the doctor up there.

For now we are very much looking forward to our family from the east coast coming out for Christmas week. It's right around the corner and mom is going to be healthy to enjoy it. This will be the greatest Christmas yet.

Body of Lies

Mom had a good chemo session on Friday and left feeling well. I sat in with her for a bit which I always enjoy. It gives us a chance to just sit and B.S. about whatever. We have each others undivided attention because there is nowhere else to go when you have an IV stuck in your arm.
After her treatment we went and had lunch at the Loose Caboose in Salinas, a little deli which has been there since the beginning of time. She was having a hankering for their clam chowder (chowda for those back East). Disappointed, she found that the recipe had changed since the last time she had it years ago. After lunch she went home for her daily nap. Tangent: There is really something to be said for a nap I think. It's so refreshing. Obviously her body is requiring more sleep as it is in a constant battle against the tumor. I like a nice nap...
At 4:00 we went to go see Body of Lies in Monterey. Good movie and very action packed. It was a bit on the graphic side for mom, who I caught more than once hidding her eyes. I wont give away any of the detail but it was a very good movie.
After the movie we grabbed a quick burrito. OK, there was nothing quick about it. I came to realize that Del Monte Mall has turned into quite the gen Y (I like to call this latest generation "Gen Me") hangout on a Friday night.
All in all another very nice day haging out with mom.

She now has a week off chemo then three on followed by another off and three more on. After that it will be time to re-evaluate and go from there.

Back to work?

Mom has been doing very well the last few weeks. That is to say that her symptoms have been minimal. She seems to have a bit more energy day to day although she still is napping. The tumor must be shrinking some at least because her back and abdominal pain has subsided a lot.
We had a little date night the other day. She came with me to Marina's annual firefighter memorial service to recognize all the fallen firefighters from the county over the years. This year was a bit extra emotional as the young widow of a Matt Will was there to place his name on the board. Matt Will was a bulldozer operator with Cal Fire and died last year on a fire when his dozer rolled down a hill. Mom was expectantly a little on the emotional side during the ceremony but I think that's OK given her current state. After the memorial service we went to dinner at a little local spot, "Francisco's." She enjoyed it and ate much more than she thought she would. She damn near polished off a whole plate of calamari. It was great to see her out enjoying herself for the evening.
She has gone back to work twice a week for five hours a day. I'm pretty sure she has become rediculously bored sitting at home all the time. The combination of her drastic improvement since Stanford and going back to work has had a great impact on Lexi. She has been in a much better mood lately and it is so wonderful to see. At 15 all I want to see is her enjoying every moment of her life.

Shame on me

Many appologies for lagging so bad on this monster I created. Just when I think I'm full (stick a fork in me) I find a little tiny bit of room on my plate to cram something else into. I've been so busy (who isn't these days) that this has been the last thing on my mind. Work has been busy with a bit of overtime, weddings, trips out of town, and trying with all I have to get a photography business going (which is so much more work than I ever anticipated, although I am enjoying the process). Once in a while I even find a few hours to sleep. So, its 12:17 am and we just returned from a call (I'm at work) so I figured why sleep now?

Enough complaining from me.
There has been so much going on since the last post. Standford has come and gone, albeit not without a hitch or 10. In fact, what was supposed to be the easiest part of the whole treatment in reality became the most challenging for mom to get through. Rashes, back pain, neck pain, shots, blood clots, an over crowded teaching hospital and a ton of waiting were just some of the problems. On a side note (and I can't wait for the comments) I'm sure the whole socialized medicine idea will do a lot to hurry up the hospital thing. I sat in the ER one night, thinking how someday under that plan we'll be waiting months instead of hours. That will be just peachy.
As I headed to LA for a conference on Monday, mom and auntie headed to Stanford for the first of five radiation treatments over five days. The first three days went very well. Mom was tired and a bit worn out but they went well and overall there were no bad side effects. This is where it all went down hill. Wednesday night her neck swelled up badly to the point where it was difficult to swallow and talk. The next morning she was in the ER. I was able to finally catch up with them there, after returning from LA hours earlier. They had pulled the port she had in as an access point for the chemo. They suspected that it was causing the issues. Using an ultrasound it was discovered mom has a clot in her internal jugular vein, the main vein retuning to the heart from the head. The diagnosis wasn't bad but it was causing much discomfort. This coupled with a sustained elevated heart rate bought her a stay overnight to be monitored. The next day (Friday) she checked out and went home for the weekend. Now she is giving herself two shots a day of Lovenox, an anti-coagulant, to help the clot dissipate. The shots are for three months.
On Monday she was able to continue with the remaining two radiation treatments.

So, now radiation and trips to Stanford are over. Mom is home and generally feeling pretty crappy. Some days are ok. She is a bit run down, but I am optimistic it will improve over the next week or so. She will have two weeks off then back on the chemo for another three weeks. Sometime when that is over she will have more scans and see what kind of progress has been made. Dr. Koong, the radiation oncologist at Stanford, told mom that remission is a good possibility. I take this with very guarded optimism but optimism nonetheless.

The family has been going through some challenges on a more personal level lately, as we all continue to process and live with cancer. The stress level is up and emotions are high sometimes. I feel for Lexi, as I know she has such a big workload at school and her singing, and of course dealing with this. The stress is bearing down a bit. It's a lot for anyone to handle and I know that mom is all consuming to her. Collectively as a family we have all decided a little help in the psych area might be a good healthy idea. I think it will really help on many levels. I don't think this is something anyone in this situation should deal with alone. I know I look forward to it for the whole family.

It has been great having my aunt out here. She's been a big help to mom and a great guinea pig for me to test out new lenses and flash equipment on. I think I have single handedly knocked her vision down a couple rungs. She'll have to get a new prescription when she gets home. I think she heads back on Tuesday.

My cousin Nancy is planning a house on La Selva beach for the whole family over Christmas time. This should be awesome. It has been a huge amount of work and I know, many hours on the computer researching from Boston. Thank you Nancy.

Well that's all for now, I'll try to get better with updates in the future. Thank you everyone for your continued support, it is very appreciated by us all.

Ready set go.......

Well Monday is my big day. Standford here I come. I have to admit I am quite apprehensive about what I am going to face, but optimistic. Just a quick update. Judy Modena drove me to my radiation set-up on 8/25/08. 4 hrs of hurry up and wait. The best part of the day was getting the upper mold, for positioning for the radiation. It was warm and comforting and felt so good on my back. That is where the soft fuzzies ended.

Cold and anxious I waited for 45 minutes, in my hospital gown, in the waiting room, to be called for my Pet scan. Never having had one before, I had no idea I was going to have radioactive dye put in my veins and have to go in isolation for another 45 minutes, in a cold storage room with only my hospital gown and a hard plastic pillow to keep me company. (Stanford missed the education op) (I'm sure I asked the right questions).

After isolation, I now got to lay on a nice hard table (on my back) for about 45 minutes while they did the PET and numerous Cat Scans. Thank goodness for my Lamaze training all those years ago, because it sure came in handy. I knew it had to be over soon. Didn't these people have to go to lunch? a break?

The day finally over, I'm feeling quite emotionally and physically beat up, Judy came back to pick me up (she got to go shopping). While I was waiting, glad to be outside, I was struck by the people coming in and out of the clinic in far worse shape than me. I stopped and prayed for them and thanked God for all my blessings, which at that time seemed to numerous to list. It's amazing to me the glory I now see all around me.

Oh, but it's not over yet.... On Thursday after my visit to Stanford I started getting an itchy back, by Sunday evening I have a full blown body rash. A reaction from the Scans I had at Standford. Why does it always happen on the weekend and a holiday at that? I got out the Benadryl, Cortizone cream, Aveno, and cut my nails, determined to wait until Tuesday to call the doctor. Not wanting to go and sit in ER for 3-4 hours. Tuesday brought me a round of Predizone and by Friday all was well. Phew.......

As I mentioned above, Monday, 9/8/08 is my big day. My sister Nancy is flying out from Boston on Monday night to get me back and forth during the week. I hope she can get through Hurricane Hanna. We will be staying in Palo Alto a couple of nights and commuting back and forth the other 3.

I am unfortunately, on Monday night, missing Lexi's Back to School Night. She will be performing for the first time in the A Capella choir. Matt is going to video tape for me. He wants to go to all her classrooms and video interview the teachers for me. Of course she is threatening him with idol intimidation. They'll have to work that one out. I have bigger fish to fry.

I'll fill you all in after my treatment. Keep the good thoughts coming. Thanks for all the prayers

Love,
Lorraine

Yes it's really me

I guess it's about time I contribute to the blog, although I don't want to take anything away from Mark. He is doing such an outstanding job. It's no secret that anyone who knows Mark from his teen years will agree, that he has more than made up for my sleepless nights. I couldn't ask for a more supportive and caring child. I say child, although he is almost 34. Anyone know a cute single girl who would like to meet a cute never married, obviously sensitive, firefighter who takes great photographs and is very handy around the house? Forever the mother.

I'm healing well from the surgery, although it has now been 5 weeks and I feel as though I should have progressed further in the healing process. I still have some pinching and redness. I'm on my second round of antibotics. I probably went off the meds too early, but whenever I have breakthrough pain, I take some Tylonol an seem to be back on track. Anyone who knows me, knows I'm not much of a "rester". I had no idea having Cancer could keep you so busy.

I hate the night. I don't sleep well and I think I must have ADD, because everytime I try to meditate, within 2 minutes I'm thinking of what I must accomplish tomorrow. My evening prayer is to make this day pass quickly, make tomorrow sunny.

I know I am on the ride of my life. It's like a new roller coaster and right in the front seat. As I started my ascent the butterblies are in the pit of stomach and my adrenlin starts coursing through my body. When I reach the top I have no idea what is in store for me. If Chemo is the crest, then I'm not in bad shape, but I know it's a long ride.

I fortunately have eased up on the 24/7 thinking of cancer. Although now I think about when I reach the other side how there will always be this black vapor lurking behind me. Normally life travels so fast we wonder where the week went. When you have cancer every day is 48 hrs long.

Chemo has treated me well so far. I do have a burning at the site, so I can only think it must be breaking down the tumor. Power of positive thinking! Those of you who know better, don't tell me I'm living in Fantasy Land. No hair loss and no major side effects.

I had a wonderful visit with my neice Nancy and her 2 almost teen children. Nobody pushed me to "perform". The best day was the ride down to Big Sur. We had a picnic at the River Inn, coffee at Nepenthe's and a little walk at Pheifer State Beach. That was the most glorious day I can remember having in a long time.

While reading an atricle Alice Knapp sent me, a quote stuck out, as it is my philosophy. (I wish I had thought of it first) "I can be happy with cancer or sad with cancer. Either way, I have cancer. So why not enjoy life."

My focus is giving and doing anything that gives me joy and it's not traveling or the plethora of things people in my situation think they must do. It's being around my beloved family and great friends that give me the greatest joy.

Thank you all for all the wonderful cards, well wishes, phone calls, flowers, prayers and books.

For now, love to you all
Lorraine

Round 2

Mom had her second round of chemo on Friday. She told me that she still didn't feel too bad from it, maybe only slightly worse. She had a restful weekend. My cousin Nancy left on Friday after a week. They had a chance to visit with my mom and we had some good time playing cards and had a BBQ at my house one night. I spent the night in S.F. with them and we had a good visit and a great meal together at a fantastic Italian joint in N.Beach. Friday they left to go back to Boston. I was in a wedding for my long time friends Jeremy and Courtney on Saturday so the whole weekend from Friday until now has been taken by that. It was a great wedding up at the Roaring Camp Railroad which turned out to be a great idea and was an amazing place for a wedding. We took the train up to the Redwoods for the ceremony. It was a great weekend.

Mom told me tonight that she was in a little pain mostly her back and she hasn't been sleeping all that well. I think mostly it's probably a little bit of her overdoing it during the day, which is pretty typical of her. She will have one more chemo session at the end of this week then two weeks off before the radiation treatment at Stanford.
So far so good...

It's on!

Chemo was a success. She is home resting and feeling no ill effects so far. She said that she didn't feel a thing. No burning, no discomfort.

Mom got home and a had a good rest in anticipation of my cousin arriving from Boston. Nancy got to the house around five. We all had a great visit. With my mom's side of the family there is never any shortage of laughter and there was plenty tonight. We grilled up some big burgers and sat around the dinner table telling stories. Mom talked about some of the times back in the day when she was young around Somerville just outside Boston. Nancy grew up in the same house so they share a lot of common memories. Mom had a great time tonight and it was a nice break from the routine. There was very little talk about cancer, it was just family hanging out. I think it was very therapeutic for her. Nancy will be in town for the week so I'm sure there'll be no shortage of card games, which is big in mom's family.

There is nothing else on the calendar as far as treatment goes until next week when she will have her next treatment.

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We're heading to the doctor today at 9:30 to see if mom is ready for the chemo. I will try to update later today.

Visitors

Just so everyone knows, mom will not be receiving chemo in the hospital and will not be hospitalized. More to follow...

Port Call

Yesterday mom had a port and a ciliac block done. The port is basically a semi-permanent IV line so that she doesn't have to get stuck every time and doesn't have to worry about an infiltrated IV. The procedure went well and she came out of it with her back feeling much better. It has been bothering her from the pressure of the tumor. The ciliac block numbs the nerve endings in the area and should work to reduce some of the pain. The doctor said it doesn't always work but it was worth a try. The pain came back to some extent last night so I don't know how well it's working but we'll give it a couple days and see how it feels.
On Friday she will go in and see the surgeon again to have a look at her incision from the surgery. It has been a little infected. Not to the point to worry about too much but to the point that she may not be ready to have chemo if she has an infection. If the doctors think it is minor enough then she will start chemo that day. If not then it will be put off.
Mom's niece and her daughters are coming to town on Friday for a week from Boston. I know she is looking forward to seeing her as they are very close. Unfortunately mom should be starting chemo that day. My cousin is a nurse practitioner in Boston so it will be nice to have her around and she is of course understanding of what mom is dealing with and isn't expectant of mom to be too entertaining. I'm looking forward to it as well, as I have most of the week off from work while she is here.
I'll update again on Friday...

Round 1

Mom will be starting chemotherapy next Thursday. She will have it once a week for three weeks, followed by two weeks off. During the two weeks off, preparation will be done for her radiation treatments at Stanford. After her two weeks off chemo she will have up to five radiation sessions over the course of a week. This will be followed by two more weeks off then another round of chemo.

Of course, mom is a bit terrified of chemo, and rightly so I'm sure, but the doc told her that the one she is taking is not one of the really bad ones as far as side effects are concerned. Everyones body handles it differently so we'll see how she does. I know she is just happy to gt the ball rolling.

It will be mid-way through next week before I post again.

Cyber-a-go-go

The morning started early today when the family, minus Matt, picked me up at the station at 7 am. The traffic was light all the way up to Stanford which is about a 1 1/2 hour drive. The air was a little tense I sensed as we were heading into something so optimistic but yet still so unknown. We had no idea what Dr. Koong was going to have to say or even if this "Cyberknife" would be the right modality for her treatment.

Technically speaking (I've been around doctors a lot lately so I can do that) the Cyberknife is stereotactic radiosurgery (spell check hates this post btw). The other similar machine is called "Trilogy" and they are the same for our purposes. These devices deploy radiation in a very narrow, precise field, guided by high resolution CT imaging and real time 3D imagery. The machine even compensates for the patients breathing rate and delivers the radiation with millimeter accuracy leaving the surrounding organs very minimally effected. There may be some nausea and an increased occurrence of ulcers.

So without further delay...

After a brief talk with a medical student who did a short physical exam, Dr. Koong came in. When he introduced himself my mom exclaimed, "wow, you're so young!" Dr. Koong gave us a very good impression and had excellent bedside manner. I could see that this put mom very much at ease. He explained the Cyberknife to us and answered a barrage of questions with the utmost patience. He feels as though mom will be a good candidate for this technology and that it will work well for her. So, she will in fact be getting radiation at Stanford with what apparently is the best technology for this type of situation in the world. Now, this isn't a cure all. There will be about a five week wait before she can begin treatment and in the meantime she will begin chemotherapy next week in Salinas. Really the only bad news we heard today is that he is very confident that the tumor will in time return. The objective is to keep it "in check." Apparently these tumors do not go away forever. So, this is not a cure, but it could very well buy a bit of time. For the time being she will receive treatment of Gemcitabine (chemo) (link at right) once a week for the next three to five weeks. She needs to be off the chemo for two weeks before and two weeks after the radiation. The radiation will take place every day for about 1 1/2 hours for around five days. In a nutshell she will start with chemo, which should be the worst part of this of course, then move to the radiation, then back to chemo again.

So this is where we stand. The worst of it starts next week. Mom is understandably terrified of chemo. I have tried to reassure her that many before her have gone through it and that she can as well. She will need to get sick to get better. I think the next few months is the time when we are really going to need to pull together. We'll be there for her and we will all get her through it and she will come out the other side healthier. Please understand that she may not be in the best of spirits now while looking toward chemo.

The support from all over continues and it is really great. She is well aware of how many people care about her and are thinking about her and praying for her. Keep it up, it is so appreciated.

More to follow next week when chemo starts.