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.