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...