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.

Back to the Grind

I've missed work. I don't know if I realized it until I got back. It was nice to be back on shift. It was a pretty slow day at the fire station. We had a couple calls and it was nice to get back in the game. It hasn't been that long but it sure starts to feel like it. The people around the station, the radio traffic, the siren, the banter around the breakfast table, volunteer training, it was all a nice break in the world which has been the last couple weeks. I thought maybe I'd get my mind off cancer for a while but that just wasn't the case. It's still all consuming. That's OK though I think that's just about right. Selai, our fire administrative assistant made a card which everyone (fire as well as police, and all the support staff) signed. It was two full pages. That just about made me lose it. In it there are two pictures of mom pinning on my badge the day I was sworn in. There is no doubt that it's going to get mom crying in the morning when she sees it. I thought that was such a nice thing. The support around here has been awesome. I had a short talk with my Chief today about all that has been going on. That had me welling up a bit. It's weird sometimes I can talk about it on and on and not be phased and other times the reality of the situation hits me and I just can't do it. It was a good day back to work and nice to get to some sense of normalcy even if my mind is a bit elsewhere.

Tomorrow is the big day. The fam is meeting me at the station around 7 am and we'll head up to Stanford together. It will be interesting to see how the car ride is considering all the emotions that will be sitting in there. I'm really glad that Lexi is going with us. I know it is important to her to be involved and I think that is very telling of her character. I know she is having a hard time just like the rest of us but she is remaining strong nonetheless. This will certainly build character if nothing else. Of course the minute we know what Stanford has to say I will update here. I know there are many out there who will be eager to hear.

We sent off for a search of clinical trials through the Pancreatic Cancer Action Network. I received the results back and there were five or six in California. I haven't had a chance to look at them yet but I will tonight and see what they are all about. Also we want to be able to discuss them with the doctors at Stanford if we see any which may be appropriate. Updates to follow on those as well.

Mom is doing fairly well. She said she had a good nights sleep last night and went for a good walk today. She was a bid on the depressed side last night and we talked about it. She said that she hadn't been able to sleep and did a bit too much reading on the net. Of course the info she found was understandably a bit depressing. I talked to her about how normal this is and that it will rear it's ugly head many more times as she goes through this process. There will be highs and there will be lows. They are all normal and they are all a part of the process. They will come and go, and not just for her but for all of us.

Friends & Family

Life has been back to normal for the most part. The elephant in the room is still sitting there and cancer is about the only thing I think about (along with how weird it feels to be going back to work tomorrow), but life is moving right along. One more day and we head up to Stanford (Stanford Cancer Center at left). Mom, Jake, Lexi, and I will all go up. We are all eager to hear what they have to say. They said that they might not start the procedure up there until September, which is obviously too long to wait. Mom is talking with the oncologist here to see if perhaps beginning chemo here in the mean time would be appropriate. Right now no decision has been made either way and we are waiting to see what Stanford has to say when we get there.

Mom has kept herself busy cleaning around the house and going for walks daily. She has never been the type to sit around doing nothing all day. It still holds true. A few days ago she even went over to the beach for a walk along the path in Monterey, and also took in a movie with Lexi. Many friends have come by to visit and that has certainly kept her spirits up. Tonight many of the ladies from her office at the hospital and a few other friends from the hospital came by. They brought plenty of food and sat around talking with mom for a while. As always, she loves being around friends. This whole thing has shown me how sometimes you really have to live for the moment and embrace the day. Friends and family aren't going to be around forever. Time spent together making memories is so crucial.

Saturday night Pete and Sole, a couple who have been part of our family as long as mom has known Jake, came by for dinner and cards. The food was great, as it always is when the Wilrodts cook. After dinner the four of them played cards. Once in a while I see mom have such a good time and laugh so hard that it hurts. Saturday night was one of those times. She had one of those laughing fits where you are just about crying and struggling to breathe. She was laughing so hard I thought she might pass out. I sat there just watching her and being so thankful for what great friends she has surrounding her. Times like that are the ones to really cherish. I love to see that kind of joy on her face. It was a great night.
Check out past posts for some other pictures I added.


Jake's cousin Andrea came by today as well for a visit. She was on her way north after a wedding down south. I thought that was very nice of her to go out of her way to see mom. I know mom has always been fond of Andrea and I'm sure they had a good visit.

My cousin Nancy is coming out from Boston the second week of August with her two daughters for a week. I can't wait to see her and I know mom is looking forward to it. Nancy is mom's sister's daughter. My mom was the youngest child and when she was a teenager living at home my aunt lived downstairs with my cousin (her daughter). Mom and Nancy became very close and have remained so over all the years.

My dad called mom today. They haven't talked in a very long time. I know it wasn't easy for him to call but he did. It meant the world to my mom. He complimented her on her job raising me, as she did 99% of it. That meant a lot to me as well. It made her cry just telling me about the call. I was so proud of dad for doing that, I think it was one of the kindest things he has ever done. Go dad!

As if he were waiting

It's as if Randy Pausch were waiting for mom to find him. Mom was supposed to watch his lecture today (I'm sure she did). What odd timing indeed. Dr. Pausch died today at 47 years old. It's heartbreaking. He was such a voice-and one of the few-for pancreatic cancer. His legend will live on in the cancer world. http://well.blogs.nytimes.com/2008/07/25/last-lecture-professor-randy-pausch-dies-at-47/?hp

http://online.wsj.com/article/SB120951287174854465.html?mod=null_topbox

Here we come

We have an appointment next Wednesday with Dr. Koong at Stanford. After looking at mom CT scans they are optimistic the "Cyberknife" will be appropriate for her treatment. http://www.cksociety.org/
http://www.stanfordhospital.com/clinicsmedservices/coe/cyberknife/default
The surgeon at memorial is a bit skeptical of the cyberknife in her case because he doesn't feel as though the CT shows the entire tumor. This of course is one of the issues which we will be discussing with him. Everyone is remaining optimistic and realistic.

Mom hasn't been feeling great the last few days. Her back and abdomen have been hurting which were her original symptoms that brought her to the hospital in the first place. It is the tumor which is causing the pain. However, she has been taking daily walks and today went to the beach with dad and Lexi for a walk along the path. We all know how much good a little fresh air can do and I think it's great that she is getting out and having a bit.

Day to day there isn't too much to talk about as not much changes. The posts may taper a bit until next week when we see the doc. I'm glad to hear so many people are taking the time to read this as it makes it more purposeful for me. Thank you for all your continued support and nice phone calls.

Last Lecture

Don't give up today worrying about tomorrow.
Wise words from a wise man. Today I finally got around to checking out Randy Pausch on YouTube. He was recommended by a friend at the Fire Department. Turns out this guy is one of the most inspirational people I've ever seen. I sat for hours listening to him and interviews with him. Here's the background. Last Lecture is a lecture series from a university in which professors give the lecture they would give if it were their last. It could be life lessons, advise, whatever. Well, Dr. Randy Pausch was given the opportunity to give his right after being diagnosed with pancreatic cancer. He was give 3-6 months if I remember correctly. This lecture, just over an hour long, is so inspirational. This is one of the most well grounded, positive people I have ever witnessed. I would encourage anyone to check him out. If you don't want to sit through the hour lecture (which does lay down a nice background), at least check out the five part interview from 2008. This guy and his wife are remarkable. Watching this sparked a lot of ideas to write about but you can save me the time by just watching for yourself.
Lecture: http://www.youtube.com/watch?v=ji5_MqicxSo
Interview part 1: http://www.youtube.com/watch?v=BZbOQqtDAW0&feature=related
You can find the other four parts of the interview in the right side window. I'll be buying his book for mom.

As for mom, she had a great nights rest last night and told me she went on a very long walk with Sole. I think that's so great that she is up and about and not even letting this slow her down a little. We were hoping to hear from Stanford today but haven't had an appointment made yet. We'll be following up tomorrow.

(Un)comfortably Numb

It's peculiar how after a while you can get used to an idea as cataclysmic as cancer. Life and the world around you inevitably goes on. It may never be the same, but then, it never is, and it just goes on, with or without you. It's kind of like the saying that if you tell a lie enough times it becomes the truth (often evident in our media). If you think about something long enough and often enough, I guess you just get used to the idea. You may not like the idea, but it starts to lose its impact, if only a little. I think this is where I'm at now. Uncomfortably numb to the idea that my mom has cancer. Don't get me wrong, it's still oh so real to me, but I've thought about it so much that my perception starts to change I guess. You run out of tears and emotions get put through the ringer daily and it all just seems to meld together into one big, odd, uncomfortable feeling. What can you do? It is what it is. I guess I feel a bit powerless. There is medicine and prayer and positive thinking, but I can't just reach in there and rip it out. I know this will turn full circle soon and come back around again, down the road, but for now I guess I'll just be numb.

Acknowledging the fact that life does go on and the world doesn't stop and wait, I had a good weekend of respite when I went to a bachelor party for an old great friend. Coincidently his mother is dealing with cancer right now as well. It was a night in San Francisco. I was hesitant to go but my better senses knew I needed a break after a whole week living at the hospital. The party was on Saturday and we knew mom was going home that day. I had finished tying up loose ends at the hospital Friday and there was nothing left to do there so I felt OK going. It was very therapeutic being around fifteen friends. I found that several times, for a period of maybe five to even thirty minutes I actually stopped thinking about mom and cancer. It was just what the doctor ordered. I guess the brain does need that relief at times to do a little reboot. I came home very refreshed and ready to take on the next phase.

Getting up to Stanford is looking very promising. I'm expecting we'll here from their scheduler within the next day or two to make an appointment to see one of the doctors there. We've been in contact with one of the nurses there and they have been very helpful and expedient. I don't know what they'll be able to do for mom but at least they are making a concerted effort to get her seen. We are all optimistic about Stanford. I hope our optimism is well founded.

Mom had a few visitors today which she enjoyed. They brought food, which I enjoyed, and I'm sure she did too. Her back has been bothering her, which may be due to her reluctance to take too many meds. She's realized after today that she needs to keep up on them. She did seem tired today, even more so than when she was in the hospital but her mood continues to be elevated. She's been writing and reading and begging me to let her read this blog. I just don't know if she's ready. I told her I will read her the tempered version so that I can make sure nothing too upsetting gets through. We'll see.

Chapter 2--Gather Intel

Well it really does feel like the end of the first phase of so many things. Mom is well on the road to healing from surgery. There has been the ebb and flow of emotions all week which are beginning to stabilize for all of us just a bit (for now). Much of the wonderful staff at the hospital has been through this with us too. This cancer has been secondary to getting mom up and kicking again. There has been absolutely nothing we could do about it. In this next phase it will be time to approach this head on and acknowledge the elephant that has been sitting in the room. Surgery, the discovery of pancreatic adenocarcinoma cancer, and the shock and awe that came along with it is now behind us. It was a brutal chapter. I know I can speak for all, when I say, I am glad it is behind us.

It is time to assess, gather, and weigh the different options we have ahead. There will be at least several. It's a decision none of us want to make. Any choice in treatment will have it's particular consequences and risks. We, and mostly mom, has to now move forward and decide which path will be the best choice for her. Due to the need for the healing process to finish before starting any kind of radiation treatment, we have two to three weeks to gather this intel and make something of it. After that it's full steam ahead into the unknown. What we will have at that point is faith, hope, luck, prayer, friends and family to move us forward. Thank God mom is going into it with such a great outlook. She is very optimistic and so will I be.

We counted roughly 25 that managed to get through the ever so porous defenses that was the fifth floor. We laugh about this because we all no mom has no ability to say no to a friend. To the many who were turned back I hope you left with an understanding that she truly wanted to see you but it just wasn't in her best interest at times. She was beat down like I had never quite seen. Not so much physically, but emotionally and mentally. To those who made it through, mainly just due to pure lucky timing, thank you for coming, mom enjoyed all of the visits no matter how short they needed to be. The family from back east has talked of a local week long get away/reunion. I think it would be so great to open it up to anyone and everyone who mom has touched for a night. We'll see how it pans out.

To all the ladies from HR who came-Caren, Nina, & Renee- Jeri Gilbert, Missy, Debbie Avalez, Nina, Jan, and Zach Thorup, Jan Wood, Janet & Kristen, Martin & Lyn, Sole & Peter Wilrodt, Steve Delormier, Ron & Sally Fuqua, Don Tamagni, Bev Ranzenbergger, Wendy Goodsen, Flora, Ann Albano, Suzie Brusa, and April (and anyone I managed to miss over the week-give me a little slack here it's been a long week ;} ) thank you so much for you visits. You were the lucky ones who had good timing or damn near. Your interest and love towards my mom means a tremendous amount to us all. Had we allowed visitors I know the numbers would have been ten fold. Thank you. And to all who sent flowers (I don't have that one in front of me, sorry), thank you. We had to pull two extra tables into the room just to have somewhere to put them all. We opened a florist shop this afternoon and sold them all---Kiding. They were awesome and they really created a wonderful environment for her all week. Thank you.

Last but certainly not least, the SVMH staff. I can't do justice with my limited vocabulary. You were all amazing all week long. You were such a support system for me when I needed you, and it was often. My mom was so well taken care of. I couldn't ask for compassion, caring, and love toward her than you all gave. Thank you. Thank you.
Molly, Libby, Christine, Minda, London, Shena, Claudia, & Nicky, you all were so good to mom. You were at our beck and call every time and I just hope your other patients got some attention too. I hope if I ever find myself in the hospital I should be taken such good care of. A extra special thanks to Libby who really just went out of her way for us all week and really bonded well with mom. You were so caring and attentive to her needs as well as mine. Above & beyond you were. Thank you Libby. To my friends at SVMH I thank you too. Charlotte, Rolando, Maria, Ruthie, Rachel, and so many others, you were there for me in the tough moments. Thank you.

To all of you THANK YOU.

Bring on the next chapter.

A Good Day

It wasn't a perfect day but there were a few rays of light.

The day started around 7am on the old sleeper chair. I think it was the empty IV bag alarming that woke us. Last night we sat up and made two lists. The first, a list of questions to ask the surgeon and the oncologist. The second a to do list of tasks to complete before our departure on Saturday. Oh yea, she's going home Saturday! I stayed up till about 2am reading cancer web pages and writing this blog (this one will be short).***Right now mom is in the hall walking with Lexi and I just heard her tell Lexi, "OK come on, let's step it up." She's really getting around good.*** Today I spent most of the day getting together all the needed paperwork to get up to Stanford, fielding phone calls, and generally walking around like a total zombie. My one job for the day was to get all of her records faxed up to Stanford. By the end of the day, after doctor visits, and all the other daily distractions I finally got it off. Now I can go home. Tonight I will go home and sleep and tomorrow go to a very badly needed bachelor party. It will be great to get this of my mind even if only for a few minutes at a time.

The oncologist came in today and had a very lengthy and patient discussion with mom, Jake, and I. I told Lexi she might not want to be in the room for this but that it was her decision. She decided to forego the M.D. version and take the tempered brother version later. I think this was a good choice. However, the conversation did go well and was a little encouraging. I am still trying to keep things realistic but I think that there certainly some things we can have some hope in. We talked about traditional treatment methods which is what would be given if it were just done here. We also talked about Stanford and she feels as though there is certainly a chance that they could have something to offer. The biggest thing is to wait and see what Stanford has to say and when and if we go ahead with chemo and radiation how the cancer reacts to it.

For now we are in the gathering of intelligence phase. There is no decision that can be made at this point. Mom must heal from surgery before any treatments can be administered. We will take all the information we have received here and all that we will receive from Stanford and sort it all and make an informed decision at that point. Unfortunately this is one of those decision that nobody can make but mom. Time will tell and we should have a determined course of action within the next couple weeks. Mom was very optimistic when discussing anything in the future. I think we all feel as though the first phase of this is over. Time to go home and focus on step two.

Someone emailed me a great idea which I discussed with mom. Get your tissues. What a great idea would it be if she were to make a series of video recordings for all of the important days that will come along in Lexi's life. A video for prom, her first love, graduation, her wedding day. One for when she has her first child, and any other big events. If she can't be here for these events how great would it be if there were a video that mom could share her thoughts. Of course we hope that we can watch these when she passes and 70, 80, whenever. This isn't fun to think about but what a great idea. Mom liked the idea. Of course it was extremely difficult to discuss but she thought it was a great idea.

Over all it was a pretty great day and I think mom's spirits were lifted by the idea of heading home and having real (albeit hospital) food. Right now she has been up walking around the room cleaning up. How typical. She is so restless sitting in the bed. She is a busy bee.

Well it's time for me to finally go home and say goodbye to the hospital for a while. I'll pick this up after the weekend.

To all who have called, written, sent flowers, stopped by, and cared for her, thank you so much. It's been a long week and I'm glad it's over.

Telemundo and Sponge Bob

Mom had a huge day today. No nap. That was a first. There were many good moments today. She was a little overwhelmed with visitors. We made a list of all the visitor she has had since she's been here. We counted about 25. Not bad. What we both laughed about (what else can you do) was how with every effort to give her a full days rest (Phone unplugged, 2 different "STOP, No Visitor" signs on the door and the whole nursing staff looking out) she still managed to get all those visitors. She thought it was kinda funny. I had to leave for a while today so I wasn't around to run interference. I think it really goes to show how much people around her care about her. She did enjoy the visits she said. Apparently not even cancer can put a damper on mom's social schedule. I think if it were Christmas time and Mel or one of the girls from HR were throwing a ornament exchange party she would probably be tying sheets together and climbing out the window to get there. Maybe sneak out in the laundry. She always has a hard time saying "no" to anything social (or anything on Sale for that matter). She sure loves her friends.

It dawned on me today that this really isn't just about her and our family. It is just as much about all of her friends and the people that care about her. If my close dear friend were going through this I wouldn't feel a whole lot different than I do now. This morning I was talking with a co-worker on the unit who over 18 years has become a good friend to my mom. I don't remember what we were talking about exactly but she just lost it. I was there to comfort her and it opened my eyes that our immediate family aren't the only ones in this. The same thing happened later with another long time friend of hers on the phone. This is someone who mom has been there to support in the past during some very difficult times and I could feel her sorrow over her dear friend. Those are the times when it hits me the hardest. Seeing others saddened just pulls the trigger for me.

As I try to focus on the positive I like to think about the fact that I have time with her. This isn't a car crash, a plane crash, or a sudden heart attack. We have time. Tons of time, I like to think. We have always talked about how we should have a "date night" with just mom and I. With a big family, one on one time became a precious commodity and as I grew into adulthood I needed less of it. We talked about actually going out and just having dinner and a beer. Just so she could spend some time with an adult. This whole week has been like the best date night I could ask for. I can't remember the last time I had the opportunity to spend so much time with her. I have more or less moved into room 532. I have my chair/bed and my laptop and more reading to do about cancer than I can shake a stick at. She keeps me busy during the day so time goes by fast and is broken up with trips to the cafeteria and out to the floor to BS with the nurses. It's been a great date night and I'm so glad I have the time to spend with her.

When she finally hits the sack at night she is so exhausted. It quite literally takes her about 60 seconds to fall fast asleep. It's interesting to see what she falls asleep with in her hands. There is the breathing tool (Incentive Spirometry) to prevent pneumonia, which she falls asleep with mid-breath. Then there are the cancer pamphlets that are still in her hand as she sleeps. She says after two days she's almost done with page 2 because she falls asleep every couple sentences. This is the best, she will fall asleep while channel surfing and ends up asleep in the middle of the endless block of Spanish channels. She wakes up and laughs every time at the Spanish soap opera which is on. Tonight she got caught watching Sponge Bob Square Pants on Nickelodeon after falling to sleep mid-surf. She really Gets a kick out of this.

It looks like there is a good possibility that she may go home on Saturday. She is doing about 20 laps a day around the 5th floor. In all my days working here I've never seen anyone walk so much. She wants out of here (must be a party somewhere this weekend). Mom is healing up from the surgery very quickly. Friday is going to be a big day of running around here collecting reports, scans, and films for her consults at Stanford and possibly UCSF. We sat tonight and made a list of questions for the doctors and a to do list for the day. We don't want to mess with this once we are already gone from the hospital. I have nothing else to do all day anyways so it will keep me busy. In very mom-like fashion, I'm about to fall asleep mid-type, so this post is over.

Reality sets in (a lot)

I remember hearing a saying from the Special Forces military community. "The only easy day was yesterday." That sounds about right. Today was the hardest day for both mom and I. We met with the medical oncologist and the only good news was that she is behind us 110% in our desire to get up to Stanford to seek out their opinion. That was the only good news. I'll just leave it at that for now.

Following many tears we focused on the fact that we have not yet seen the doctors at Stanford. Just maybe they will be able to perform to a level that our local doctors simply aren't familiar with. Just maybe this "CyberKnife" will be something that is just right for this particular situation. Just maybe we'll get one of those miracles that we've all heard of so many others before us experiencing. Mom and I talked about focusing on today and tomorrow and not next week or next month. One day at a time is an attitude that is becoming more and more difficult to maintain as we learn more about this cancer. However, in a matter of about an hour mom went from deep sorrow and depression to coming full circle telling me how much of a fighter she is, how hard she will push back. We've both come to realize how bad of a situation we are in. I say we because we are all in this with her. It is in her body, but the fight is all of ours.

Since Monday I have only left the hospital for a few hours and as I lie on this sleeper chair once again I realize how lucky I am to be given this opportunity to spend all this time with her. Be it a back scratch or pulling her socks on and off, it's great to be able to be here to help her. I know she appreciates it and this makes it all worth it. All of the nursing staff have remained incredibly supportive, not only professionally but personally. I feel so lucky to have her here on the floor where I work and know all of the staff. I have a bunch of my friends taking care of my mom instead of a group of strangers. I can't express how much that means to her and I. She has had nothing but good to say about her care.

Lexi bought mom a little journal that she could write in. I encouraged her to do so. Obviously I think it's a good idea. I think that it gives her an opportunity to get personal thoughts off her mind and on to paper. Whatever she gets on paper is less that she needs to remember or think about and gives more mental capacity to focus on other areas. The more she frees from her mind the more she will have the ability to process the myriad information she has coming in. It also gives us a record of her thoughts later on down the road.

We would like to express our continued gratitude also for all of the flowers, cards, and visits which has been pouring in. Mom certainly has no shortage of people who care about her. Unfortunately the visits, as much as she wants to see everyone, is taking a toll on her. I think continually discussing what she is going through is making it harder on her to progress through the various stages she needs to move through. I invite anyone who would like more info than you're getting here to call me directly and I'd be happy to talk. I know exactly as much as she does at this point so it allows her to move on emotionally. We will probably forego further visits for now as she needs mental rest more so than physical.

Reality sets in (a little)

I think it hit her pretty hard last night. She woke this morning saying that last night she came out of a deep sleep and it just hit her, "I have cancer." This was the first time that she really saw this for what it is. I guess everyone kind of processes it at a different pace. I think it has set in for me and I know that we likely have a long difficult road ahead. The little bit I have had the chance to read about pancreatic cancer is not very nice. It's up there with the bad ones. Everyone says how tough mom is but she's not so sure. I am. She was tough enough to get through 18 years raising me and that was no easy feat.

As far as the hospital goes, they are taking very good care of her. We have her on the floor where I work. I know all of the staff here very well and many of them already know her through her work in HR. Mom is very popular here at SVMH. I stayed last night and all of today and I'll be here again tonight. It's been good for both of us. I'm here to get whatever she needs right away and make sure that everyone is looking after her and I get to have the chance to sit and talk with her when she's awake. I think that she should have someone here to talk whenever the mood strikes her while she is going through this roller coaster of emotions.

She has already had many visitors and the support from everyone has been wonderful. From friends and family to co-workers to the crew at the firehouse, you have all been great and it is so appreciated. I think over the next couple days as her strength comes up she will be up for more visitors.

We look forward to hopefully meeting with the medical oncologist in the morning to get some of the many questions we have answered. At some point when she is healthy enough to travel we plan to get her up to Stanford University Hospital where they actually have a dedicated pancreatic cancer center with the best doctors and processes in the world. My cousin Nancy has connections through her work at Harvard and we look forward to taking full advantage of this blessing.

Info Please

Mom is asking that anyone out there who has dealt with this kind of thing before or who is in the medical field send any info you may have. In particular she would like anyones input regarding questions she should be asking the oncologist. Suggestions could be sent to her email at lorraine.thorup@gmail.com, my email at mark_sweeney1@yahoo.com or they could be left as a comment on the blog at the bottom of each posting. Thanks.

Day One

Cancer. I can't think of too many words I'd rather not hear when a doctor is talking about my mom. It's like a ton of bricks. For someone who has never been around cancer, it's a bit tough to process. Pancreatic cancer is pretty serious stuff. We'll all get through it but it's going to be a long tough fight. Mom is tough and she is so far, very optimistic. I'm trying to be. We are getting support from all over. Family, friends, and co-workers have all been great and it's very appreciated. After 18 years at the hospital she knows everyone and many people have been coming by and sending their love. They are taking good care of her. She's on the floor that I have been working on for the last couple years so it's nice because I know all the nurses and doctors.

So far we don't know too much. The doc knew there was a mass on her pancreas and was planning to remove the spleen and part of the pancreas. When he went in today he found more than he anticipated and was unable to remove any of it because of the location and depth into the pancreas. All we really know now is that she'll likely need to go through chemotherapy and radiation very soon. At that point we just have to wait and see how the cancer reacts to the treatments. She's pain free and in good spirits. I'll be spending the night tonight at least. Say a prayer for her.

I'll do my best to keep this updated for all who are interested in following her progress. I also made is so Matt, Lexi, and Jake can write if they feel the desire. Thanks for all the support.