I've been thinking I needed to add some clarity about the obvious enthusiasm and optimism in my last post.  While the tumors and the lung embolism were gone in the last CT scan, it was not all clear sailing and it certainly didn't mean I've heard the last of pancreatic cancer.

Doctor N reminded me, as he read the radiologist report of clear scan results, that what this means is that we were, as hoped, able to delay the recurrence of cancer, and it did not mean we'd cured it.  I believe I was so encouraged by the results that I just did not take that in as deeply as I should have.

So I went and did a little browsing and homework about pancreatic cancer recurrence and found several studies that seemed quite relevant and also a little encouraging to me. One of these studies focused on the question of recurrence and survival based on the time of recurrence (early, i.e. during chemo/radiation, or later) and how that effects survival rate. The others were about the blood marker CA 19-9 and how various levels of that marker seem to effect recurrence.  This is where my issues come in. In our final visit, Dr N pointed out that my CA 19-9 marker had increased from 60 to 120 and that this is not an encouraging sign. What is encouraging is that the studies point out that survival among patients with CA 19-9 levels below 180 is considerably longer than among patients with levels above 180.  It also seems possible that levels can reduce with time following surgery and chemo/radiation treatment. So that is a possibility worth keeping in mind.

So, here are links to those studies for those who might want to dig through the details.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063904/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326972/
http://jco.ascopubs.org/content/26/36/5918.long

As a general rule, I've found the studies and articles in The Journal Of Clinical Oncology to be very well done and quite readable.

A bit of a jolt happened yesterday when I had to write to the VA to claim a hardship situation regarding my appeal of their decisions on several of my disability claims. By some strange turn of events, I was able to reach somebody in their customer service call center, and by an even stranger turn, this person was able to give me some really useful information.  I had called to make sure they actually had my appeals in their system, as for the second time since April, their computer system showed none had been filed. As we talked, I asked how long the appeal process normally takes and was told that an average simple appeal typically takes 370 days. Good grief!  I commented that I likely would be dead before they got to it and the rep thought I was just kidding. I told her about the pancreatic cancer, and she told me I could write a letter stating a hardship caused by a terminal illness and asking for expeditious handling of the appeal.

So I wrote the letter, pointing out that I likely would not survive 370 days from the date of the appeals.  And strangely,  I kept coming back to it, re-reading it nearly ten times throughout the day. Not entirely sure why this happened, but I suspect it was that I had some kind of tangible evidence or admission of my mortality. It didn't feel good at all. Not real scary, but something of a downer for sure. I guess I'm glad that I'm suffering so badly from the diabetic polyneuropathy and that the constant pain, while bothersome, keeps my attention pointed away from cancer. I hope I'm not minimizing or using the other ailments as a way to avoid dealing with it, but I'll take it whatever the reason.

Keep on keepin' on, reader. Never give up. We never have more than the moment at hand anyway. Best to you.

Namaste

Well, they said in September that it couldn't be done. All three docs. The surgeon said he might not take the tumor because I was a crappy risk for surgery. Each test told him otherwise, and he changed his mind. The oncologist said chemo might not help following surgery because pancreatic cancer is just so dang tough to deal with. The radiation oncologist said much the same, and cautioned that the side effects of radiation might be more than I wanted to handle.

Well. Wrong! Yesterday's CT scan, following surgery and months of chemo and radiation, came up clean. Even the areas that looked questionable on the last scan came up clear. Pulmonary embolism gone. No sight of any tumors. All is not quite perfect, however. There is a marker in a specific blood test that does sometimes point to pancreatic cancer, and it is trending up which is a little worrisome. Yet that can be caused by things other than cancer. However, with nothing on the scan, there is nothing  for them to work on.

So today, chemo doc concluded that we have indeed delayed recurrence and improved quality of life (I'm off pain killers for a week and now wide awake) as was the hope when we began.  Can't yet use the word cured or the word remission. But I don't need those words. I'm happy with the word gone, as in tumors all gone.

 Two unusual things happened yesterday. I was encouraged by a friend to hug the scan machine. So I did. And spoke tenderly to it. After the scan, waiting for the van, a good friend from work who I hadn't seen for more than two years, ambled up to me with her hubby. Hugs and chitchat and then learned he was back for a 3 month re-check.  Originally he had been given 12-18 months and very little hope. Now cancer free nearly two years and lovin' life. This kinda coincidence happens to me often enough to know it means something special. Confident it was a sign from Spirit and I was gonna get a clean bill today with three month re-check.  Sure enough it was. I had worked hard up till the doc walked in, to prepare for the worst news as well. This kind of result just doesn't happen with pancreatic cancer.

I don't know that this experience could apply to anyone else. But I'm convinced that faith and confidence and accepting the fear rather than being overwhelmed by it, and getting the most of each day had a great deal to do with this result. And prayer. A lot lot lot of prayer.

Never give up, people. We only have today and this moment anyway.

Namaste

Has it been a full month?  Apologies to anyone who might be looking here for useful information.

We're now a week past the final Gemcitabine treatment. Finally it feels like it's beginning to clear out of my body. Still the annoying runny nose and weepy eyes, and an awful time getting to sleep, but I now feel more "awake" at times during the day. It's a bit of a surprise because I didn't ever know I was less than fully awake.

So now I've managed to make it through all the chemo and radiation they had in mind for me and am feeling not much the worse for wear.  I did manage to sleep through my CT scan appointment last week, so will have to go do that on Monday. I'm a bit apprehensive about it because the bad news option leaves little option.  But must suck it up and go find out what is or isn't down there.

Was thinking a little while ago that I never did notice any difference from missing my spleen, which they took along with the tumor in early October. Why is that? Does it do nothing other than secrete bile? Is bile necessary for anything, really? Aside from making us bilious from time to time?

So that's all for now. Will post again after I learn the results of the scan next week.

Never give up. Today is all we have anyway.

An uneventful but informative visit with Dr N today.  Today begins my "off week" from Gemcitabine. Because my CBC numbers were dropping significantly, I asked him about it. For starters, he was not the least bit concerned about this change. (More concerned about the 4 lb weight loss) and said it's pretty normal with Gemcitabine. In fact, he explained that this is the very reason they take a week break after three treatments. Three is about all the body can take at one time. He predicted that next week the numbers will be significantly back toward normal.

I've mentioned before that there is another guy with very similar pancreatic cancer on the same treatment regimen, about a month ahead of me. I usually ask how he's getting along and when I asked today, Dr N said he was not looking forward to me asking. It turns out the guy had what was a recurrence on the day of his final treatment.  Not much they can do about it except try to retard the tumor growth and ease his pain and discomfort. Will be trying a different chemo regimen designed for that. At least to begin with. This news was a bit of a reality slap in the face. I suppose I've just been taking advantage of all the energy I have to put into the Diabetes and Peripheral Neuropathy symptoms as an excuse to ignore the mortal reality of the cancer. Gonna have to turn my mind toward that, I suppose. So I asked what most people encounter when recurrence comes along. Of course, everyone is different, but substantial abdominal pain and digestive discomfort are pretty common. I will ask Teacher to spare me that as he sees fit.

That's about it for today. Three more chemo treatments and then the PET scan to see what's new, if anything. Here's hoping there's nothing there.

Namaste. Never give up. Life is here for us to do what we can with it. Bud, on the other hand, is here to make me crazy.

So it's been a full month.  Nothing to be discouraged about, and something new today to feel a little encouragement about.

Dr N gave me a three week break following completion of the radiation/5-FU therapy. Had planned for two weeks, but the side effects during the first week off were intense enough to cause him to wait another week to clear that stuff out of my system before starting back to Gemcitabine.

Somewhere I read that the first week following daily radiation/5-FU therapy can involve side effects equal or greater than those during the treatment. That did happen with me. The side effects were more annoying than debilitating, but Dr N  wanted to make sure that stuff was cleared out completely before beginning the next phase so as not to reduce the effectiveness of the Gemcitabine.

The side effects of radiation/5-FU for me were mucositis including inflammation and some blisters from the lips all the way to the stomach. This pretty much killed my appetite, although I could still get hungry from time to time. Continued losing weight through this period and didn't put a stop to that until last week, when I finally gained two pounds, having forced myself to eat half a rhubarb pie with frozen yogurt. Ugh.  Had minor nausea throughout, mostly limited to times when taking medication or eating. I'm sure it was a consequence of the mucositis.

So about a week after stopping the radiation/5-FU therapy, the body began to get back to normal and I started back on Gemcitabine two weeks ago. Was a little concerned that the side effects might be a bit more severe following the experience with radiation/5-FU, but it turns out they have been almost identical to the first two months on the stuff.

One of the fun things that has happened during this period is the way Dr N always asks if I've experienced any abdominal pain during the previous weeks. My answer is and always has been "no", and each time it seems his smile gets a little more broad and the surprise in his voice seems a little more emphatic each time.

The first encouraging thing is one I likely manufactured in my mind, but it was there nonetheless, so I'll take it. After the 30 day followup with the radiation oncologist he said he would schedule me for a six month followup visit. Later that day I realized I had not considered or planned on anything six months out in the past year and it brought a nice warm smile, even knowing it might not be at all relevant.

Now for the (potentially) good news. I asked Dr N to see if he could find an alternative anti-coagulant to the enoxaparin because my medical pharmacy benefit had changed and my co-pay went from $5 to $380 monthly for this subcutaneous monster. Today I got a call from the group pharmacy letting me know that my new prescription for Xarelto (Rivaroxaban) was ready and it should arrive in a few days. This, of course, is for the pulmonary embolism they found in October and apparently is one of the few anti-coagulants that is effective with pancreatic cancer.  Don't know much about it except for the few Internet references I've found, but those look very encouraging. My belly will be happy to be done with the bruising and bleeding from that twice daily injection.

That's all for now. Still here. Still kicking. Still hurting. Still smiling. And still looking forward to tomorrow.

Namaste. Never give up.

A milestone that feels like a millstone.  Yesterday I finished the six week radiation/chemo component of the treatment plan. Got my certificate of achievement and got to ring the "graduation bell", ding dong day.  Actually, it was quite a treat. Got a standing O from all the patients and staff assembled in the reception area, and sweet hugs from most all the staff.  As uncomfortable as this treatment process is, I will miss the people involved. So very impressed with their dedication and humanity. These people at the Chattanooga Memorial Cancer Institute know cancer and know cancer patients. And they treat them and us wonderfully. I feel most fortunate in this regard.  I've made a few nice friends among the patients I saw daily and always worry some when I don't see them. Some of these folks have had a much rougher time of it than I.

Before they disconnected my 5-FU pump, doc told me what to expect in the coming weeks. Almost wish he hadn't told me to expect that the side effects can get worse before they get better. Sure enough, he was right.

So in the end, the inventory of side effects feature a bit of nausea and significant mucositis, leaving tenderness and sores from my lips to my stomach. Indeed, it is a little worse today but I'm sure it's gonna turn in another day or two. Those and the low level fatigue are about it for the side effects in this treatment segment. I am looking forward to the two week break and the six week weekly Gemcitabine infusions. Found very little discomfort with that in the beginning six weeks.

A trickier matter is what to think and do about the answer Dr. N gave me to my question about what he would expect my future to be given his experience with other patients with similar conditions, with this treatment regimen, and with my response so far.  He agreed that finding only one cancerous lymph node among the nineteen they removed could be a  good sign, suggesting they might have gotten most all of it with surgery. However, the fact that they'd found some in the fatty tissues on the margins argues in the opposite direction. So, while he hopes we may have a cure, the history of pancreatic cancer suggests otherwise.

So his guess was that we may well have delayed the recurrence following surgery. That some have survival rates of 18 - 24 months, and a few survive about 36 months. Without the chemo and radiation, many survive 12 months or less. There is no telling if or where I might fit into that picture. One effort to find comfort in that finds me concluding that given my family history, I'd be very lucky to survive 36 more months for any reason, including "old age".  Actually, I've always believed that for me, anything beyond 56 years would be gravy, and thus I've had quite a lot of gravy, for which I'm grateful.

So there remains the thinking and deciding what to do with the rest of this time. I really have only a few powerful beginning ideas, and realize it would take a pretty big chunk of time to even get moving on them.  But whichever path we choose, enjoying the present moment and day will be the feature part of the plan.

Never give up.  Namaste.

Heading into the home stretch of the 5-FU/radiation treatment regime. Four sessions remain of the planned 28.  Chemo doc removed the 5-FU pump for the weekend, largely due to nasty mucositis,  and radiation team gave me Monday off so both can end on Friday. Saturday was not too bad in that I got outdoors for a while and could mostly ignore the discomfort. But it's significantly worse today, and that's surprising as I expected it to go the other way. Ah,well... just five calendar days left for that regimen and then after a break it will be two three-week programs of Gemcitabine IV therapy. I tolerated that very well the first time and hope to have the same experience.

Overall, today is kinda miserable. All food except scrambled eggs looks and tastes bad. Can't chew and teeth remain in glass on sink. As of yesterday, had lost exactly 80 lbs since the diagnosis was made. Be happy to stop after 40 more and chemo doc says that plan should be ok.

So as crappy as it feels, I am determined to make the best of this deal and be grateful that I'm so close to the end of radiation.

As for you, survivor, I hope you are well. Better days may well be ahead.

Keep on truckin' and never give up.

So much for looking forward to radiation treatments. They're starting to take a bit of a toll and that will no doubt increase as we go for the next two weeks.  The only problem I'm sure is related to radiation is the diarrhea. It was bound to happen as I can't imagine how they could get a beam in there without damaging some of the surrounding organs and tissue. The pancreas is, after all, surrounded by other organs and the beam has to go through them to get to the target. Still and all, I have great faith in the oncology radiation doc and the techs. They are extremely careful to get me positioned properly and watch closely as the beam travels across my abdomen.  Chemo doc prescribed a med for the blasts and it appears to be working for now.

The 5-FU has begun to have adverse effects again. After they had the pump disconnected for a week, my mouth and throat finally healed and were good as new. That's encouraging to think about how quickly they will heal once we're done with this stuff in two weeks. The effect is common, and I believe is called mucositis, and it inflames the skin of the throat and mouth to the point where I don't really want to eat anything. It could also be caused by radiation in that local area. Guzzling the protein shakes now and then works somewhat. But the stuff I can eat with this problem (dairy mostly, scrambled eggs and hot cereal) tend to aggravate the other problem.  There is a deal called Magic Mouthwash that helps some in that the Lydocaine in it numbs the mouth and throat for a couple hours at a time.

Please don't take this as complaining. I'm not. Just passing on the information about this experience so that anyone looking here for information will get what's real.

There is a new release about how Doxepin relieves some Mucositis pain.  Here...

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2BTumors&d_id=148&i=February+2013&i_id=932&a_id=22583

All for now. In two weeks I get to ring that damn bell. Never give up. You are a survivor.

Made it to the half-way point today, both for the radiation/chemo segment and the overall treatment regimen.  Up until last week I had been looking forward to this point. But the side effects are kicking in and kicking my butt a bit.  Actually wasn't sure I'd make today's treatment because in the middle of the night I considered a cab ride to the ER.  Mouth sores, mild nausea, sore throat to the point of feeling like throat tissue is peeling and there is some obstruction lodged there.

This didn't happen with the Gemcitabine alone, so it's down to the 5FU. Disappointing because they convinced me that this was the less powerful when it comes to side effects.
Will pour down the cough drops and lemon/honey tea and keep my fingers crossed for some sleep tonight.  Just three more weeks of that brand of poison.

One thing that's encouraging is observing the others undergoing radiation as we come together in the waiting room. A most cordial gang of geezers, all very kind and thoughtful. What's encouraging is they never talk about their cancer. They talk about life. That makes for a very healthy perspective for me.

Never give up.

Not sure what chemo day this is, but I've finished two three week cycles of Gemcitabine.  I have been blessed with few and mild side effects. Some sniffles and sneezes that typically lasted only an hour.  Usually occurred on the third day after a chemo treatment. Got a little fatigued in the second cycle and I have only the chemo to point toward.

Now in a period of chemo pause while we prepare for the radiation/chemo phase. Great news today is that it's a 28 treatment plan, a full month less than I'd come to expect. Getting up the gumption to go in there every weekday for six weeks is the biggest challenge so far.

I'm blessed to be at this point, as the CT scan done two weeks back showed no new metastatic growths around the pancreas. There was some swelling and a small pulmonary embolism in the lung which we continue to treat with blood thinner injections.

Today we did another scan, this one to map the parts of my body that are to be blasted with the accelerator.  I'm impressed with the docs, but the organization structure for getting to and supporting the treatments gives me pause and pains.

I suppose it's a mixed blessing that I have so many health problems separate from cancer. Leaves very little time to think about the cancer and my prospects.

This below received in an email from Pancreatic Cancer Action Network (PANCAN) today. Keep in mind that PA'NCAN is all about promoting clinical trials and I make no judgment about that one way or another. They do seem to do pretty good and useful work.

**Important Clinical Trial News**

Last November, we shared that Celgene Corporation (Celgene) released positive news relating to its pivotal clinical trial in the treatment of pancreatic cancer. Celgene conducted a phase III clinical trial with the intent to show that the combination of its chemotherapy drug ABRAXANE® with gemcitabine would improve overall survival in patients with untreated, metastatic pancreatic adenocarcinoma when compared with gemcitabine alone. Use of gemcitabine alone has been the standard of care for pancreatic cancer.

The supporting data was released today by Celgene, showing that overall survival increased by nearly two months (8.5 vs. 6.7) in patients who received the combination treatment. A
59 percent increase in one-year survival was also reported. This information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. On average, patients treated with gemcitabine and ABRAXANE did experience more side effects than patients treated with gemcitabine alone, though the combination was still well-tolerated.

The complete findings of this study will be presented at the Gastrointestinal Cancers Symposium in San Francisco later this week. Celgene will then take this data to the U.S. Food and Drug Administration (FDA) for approval in pancreatic cancer. ABRAXANE is already approved to treat breast cancer and non-small cell lung cancer. Before FDA approval of ABRAXANE for use in pancreatic cancer, physicians may prescribe ABRAXANE if they feel it is the patient’s best option.

These positive results indicate another step forward in the treatment of this disease. This success also illustrates that clinical trials can give patients access to state-of-the art treatments that may be their best option. Overall, patients who participated in this trial experienced more time with their families and loved ones. Treatment progress for pancreatic cancer will only be achieved through the clinical trials process. Further, this positive news brings us one step closer to the Pancreatic Cancer Action Network’s goal of doubling pancreatic cancer survival by 2020.

If you or a loved one is facing pancreatic cancer, we recommend that you consider clinical trials as a treatment option every time you discuss your treatment plans. At the Pancreatic Cancer Action Network we maintain the most comprehensive database of pancreatic cancer-specific clinical trials in the country, and we are staffed to help patients understand access and eligibility for these trials. If you have questions about this important news, please call our Patient and Liaison Services (PALS) program at 877-272-6226, Monday through Friday from
7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.

Sincerely,

Julie Fleshman, JD, MBA President and CEO

Day 29 was a mixture of pleasure and pain, but overall I'm happy how it turned out. The past week side effects have been mostly absent again. Some sniffles and sneezing, but it always goes away in an hour or so.
Nothing else.

And that's the pleasure part. Doc N is both pleased and surprised by my progress so far with Gemcitabine. He asked me three times about stomach pain, as though he couldn't believe I hadn't had any. The bad news was I was stuck in a wheelchair made for a pre-schooler when what I need is one with a wide load sign.. A couple hours in that and my normal jovial demeanor was heading for the exit fast. Also stumbled several times transferring from and to the wheelchair, but luckily had managed to position my fanny at least part way above the seat when the knees gave out.

The good news?  A misinterpretation on my part of Doc N's initial description of the chemo drugs and their side effects. If all goes well with the next three weeks, I will start 5-FU or whatever along with daily radiation. The first good news is that those drips are weekly, not daily. The second is that between the two chemicals, 5-FU is not the one with more pronounced side effects. It turns out the Gemcitabine has more pronounced side effects. So this is likely close to as bad as it gets for me. Unless of course those baddies go viral and we have to get radical.  Should get first clue about that in three weeks, as they want to do a scan to check for new malignancies before doing the radiation. Fingers and eyes crossed about that.

Time to drag my achin self to bed. Best to you all. And best wishes for a peaceful pain free holiday.

Oh. It appears that one of the local VA Social Workers has pulled a rabbit out of the hat and convinced the low-income transportation service from the next county north to take me to daily radiation treatment for two months. I hope this does work, as that would be a very large pile to taxi fares. Thank you, young man.

Day 21 - My juice-free day. I am curious to see what will happen with side effects, etc. after missing the regular weekly chemo drip this week. I was supposed to go in for blood work, but they allowed my Home Health Nurse to come wake me at half past the crack of dawn to stick me at home.  I am grateful to avoid the two hour round trip, the time getting ready, the shaky transfer to and from the driver's car, and the wheelchair trip up and down my Super Ramp Of Death.  Instead, I took Bud for a long romp in Larry IV. Cold and bracing but nice.

This week have been fighting sniffles and coughs and chills. Mostly they pass quickly but today they're sticking around a while. Add to that some difficulty getting to sleep and some hard to shake blues and you have the possible side effects for the week.  Mostly get around them ok. For the blues I took Bud out to the woods to find a nice dead branch that we made into a Christmas Tree.  Got the new boob tube configured and watched my first home 3-D movie last night. The Avengers, a pretty good flick and a little fun in 3-D with great visual effects anyway. Have done some cleaning in preparation for a visit from a bestest friend Christmas week.  And stayed in touch with some friends and acquaintances via social networks and telephone. Those little moves can take a pretty big chunk out of the time the blues have to do their dirty work on me.

Read a NY Times article about aspirin, including a line about a clinical trial that shows it to have remarkable effect in preventing adenocarcinoma. Like the one that was in my pancreas. Too little, too late. But may be good to pass along to those who aren't here yet.

http://www.nytimes.com/2012/12/12/opinion/the-2000-year-old-wonder-drug.html?adxnnl=1&smid=fb-share&adxnnlx=1355339522-Lmxk0bQGoo958jCWGABcEA

With that, I shall continue my adventure with sniffles and Bud. Today we steam clean carpets from the wheelchair. This should be fun.

Day 18. Another largely uneventful few days.  These little side effect bouts are a little annoying at worst. Thought I'd add today because we changed the treatment schedule and wanted to see if  delaying today's treatment four days had some kind of effect. I believe it did. But not much. I'm getting the sense that the chemo dosage is carefully planned to last the duration of the time between treatments. I know the mind has an awful lot to do with this as well, at least in my history it does. Originally supposed to get treatment #3 on Day 14.  I'm sure that I felt the side effect sniffles and cough clear up more and more Monday through Wednesday.  Sure enough, my body seemed to have little or no chemical left today, and my blood work seemed to suggest that was true, with the white cell count climbing back above average into it's usual spot.  So today I began with sniffles and chills even before the treatment was finished. That should last a few more hours at most. (Sure enough. They've disappeared even before I've finished this.) Next week is my "week off" so I'll be off the juice for about 14 days. Still must go for blood work, but no time in the snack chair.

For some reason, today as Brenda opened the IV line, I could "feel" that juice running off to kill some bad cells. Now, I know it could not work that fast, but the thought was more than b.s. as I've experienced such images a number of times as or just before they came about. We'll see.

The Treatment Room nurses are a breed apart. With four nurses covering up to 28 patients with each at a different place in their treatment sequence, these ladies never ever stop running.  Literally.  Always a smile and a gentle word or laugh for us, no matter what they're grappling with.  And they have the eyes of a hawk and are about as fast on the move. Today, Brenda asked me how the anti-nausea med was working at home and I told her the only nausea bouts were unexpected and brought on by coughing. About ten minutes later I sneezed and she jumped from the station across the room to see if I was going to cough and need the bag. Nope, just smiled instead. I think if we scratch our nose in there, we will have a nurse on it checking for side effects.

Thank you all.

Uh-oh. Chemo Brain. As if I didn't already have enough trouble remembering anything for more than two minutes. I suppose in some ways this is a good thing, as it explains how and why this problem happens, and suggests at least one way to deal with it.  Make lists. Have caregivers or others make lists for you.

http://www.medicalnewstoday.com/articles/253277.php

http://www.foxnews.com/health/2012/11/27/evidence-chemo-brain-verified-by-researchers/

On a different note, here's a question. In one of his presentations, Kabat-Zinn speaks of a condition whereby  some people come to think of themselves as being defined by their disease. I wonder what that looks llike. Know anybody with that condition?

Nothing but some minor sniffles yesterday and today. Hoping you do at least as well.

Best to all. Hang in there.

Day 9

A pretty strange day today. Began by waking in my recliner to find home health nurse changing a bandage on my IV.  Seemed to suggest the day was pointed downward, but it turned somehow.  Highlights include getting some overdue chores done while working with housekeeper, Tami. Favorite was driving Larry IV (power chair) out the yard to the storage shed and maneuvering it through the wet grass and mud to where I had stored the remnants of RoD. (Ramp of Death). The point? Retrieve a piece of 2X4 lumber to make bed elevator blocks. Found a saw in the shed and even managed to saw the block in half without shredding my hands. Why share? Because elevating my legs in bed this way will keep my lymph edema down, and get my fat butt out of the recliner every night. Just a shred of normalcy at a time when they are few and far between.

Next was a new person coming to help me get a bath. I always get a little anxious about hanging it all out in front of someone I've never met, but I'm learning to live with that. It was a great sponge bath at a time when I must be very careful about skin-borne infections as well as all the others. And it feels great to be clean.

The trip to my long time primary care doc was perhaps the highlight, though I barely made it in and out of the car both coming and going.. He agreed to send a letter supporting my disability claim to the VA based on the draft I left him. This is no small favor, as he needs to edit it, have it processed, copies made and mailed. Better yet, he completed a lab order for the chemo clinic doc asking for three tests and a couple preventive injections they apparently hadn't thought of.

But the real kicker with Dr. O. was him sharing his opinion about my diabetic peripheral neuropathy compared to the obvious nerve damage in the lumbar spine caused by several pretty serious disc problems. His point was that he has never seen neuropathy so serious as to cause the kinds of mobility problems (can't walk a step without a walker) and loss of use of all organs in the lower unit.  Of course, this is not good news for several reasons, the worst of which is that we have to go back to square one with the diagnostics to figure our what if anything can be done to relieve those problems. I suppose it could also call my VA disability claim into some question, although he makes the point that both neuropathy and spinal damage are obviously involved. He just doesn't know how much damage to attribute to each.

What does all this have to do with pancreatic cancer? We the point of taking the time to share it is that I'm learning daily life must go on with cancer and we do have other things to think about and deal with. That's not to minimize the importance and terror of the cancer. But to say that if we dig into life, we can work with it and find a few smiles here and there.

Best to all.

Day 8 - Nov 26, 2012

Today seemed like a whole lot of drama or excitement or flurry of hustle over the act of dripping two very small bags of medication.  Could easily have done this at home and saved all the drama. But it wasn't ALL bad. So, here's the short version.

Because I had a 4 AM departure via taxi, I just avoided going to sleep by doing overdue chores, and got there a little early. Very large hospitals, when empty, seem somehow less than lifeless. The reason for the early shine is that I was having a "PortaCath" device implanted under my collarbone in a day surgery. Easy enough for someone with no attachments, but my catheter bag (cleverly disguised by Wal*Mart bag) wants to flop and tangle and pull itself out when I move from chair to bed to gurney. And if they leave you on the bed to dress, with no wheelchair within reach, well...... Just about every move takes 4 times longer than normal and often some creativity in using "Stick", my cane and constant companion.  Imagine using a cane to put on a sock. Happens all the time here.

The procedure was apparently simple and quick. I awoke elsewhere, grateful for the sleep. The Porta Cath was implanted to facilitate chemo drips, blood draws, etc. I am a notoriously horrid stick for blood draws and IVs with many bruises to prove the point. They dance and scream and run around when they see a needle. So this dzugyi can be accessed any time by most anyone with a needle. A small reservoir under the bone but protruding at the surface, with an attached tube running into a large vein just above the heart. Perfect for mainlining. So after 12 hours, the small (1.5") incision hurts and stings a little, but that should be gone within a day or two.. I will be sooooo glad to get rid of these IV lines and their daily flushing ritual. Another half hour to an hour I really don't have to spare. But onward.

I used Kabat-Zinn's mindfulness meditation several times during this adventure. Mostly, when I found my neck and shoulder muscles tensed to the point they could not be relaxed by pulling or kneading. Tension gone in less than a minute. Needed three tries to make it gone altogether. What nice relief.

The chemo treatment room was SRO today. Literally, there were people standing around waiting for one of the thirty treatment chairs to be open. All very friendly. I now I soon saw why. Lunch!!!!  A daily ritual, somebody brings in boxes of a hundred or so sandwiches, a box of chips and crackers, a box of Little Debbie snack desserts and a box of drinks. It takes five kids to make the rounds in a line, several times and be sure everyone, patient and staff, does not leave hungry.  You can argue the ethics of passing out less than healthy food, but you cannot argue that it gets people to their appointments on time. Same doses as last time. Small bag of anti-nausea liquid, medium bag of Gemcitabine, less than an hour with the pump running.

Then, Ben, my occasional volunteer driver, brought me home to Bud, who started doing backflips for treats and demanded to go out to play "Let's Be Idiots".  Great fun, actually.

And there it is. If you are approaching a chemo regimen. My only advice at this point is ask and read. Best bet, by far is your physician, like it or not. The information could mean the difference in your treatment results. Best of luck to you.

b.

Well, we've begun. I was beginning to wonder if we'd ever get here, but we have and all's well so far.

Day 1 (Nov 19, 2012)
Largely uneventful. Depending on who's reporting I suppose.  A good appointment with CB prior to treatment. Beginning to like this doc more and more. He couldn't be less like me, but I am grateful that he treats me as an intelligent adult who can understand all his thoughts if only he's mindful about how he puts them out. We talked briefly about nutritional supplements as I had been talked in to taking a green tea concoction for it's cleansing powers. One of the five ingredients in this compound has the very same physical effect on cancer cells as chemo. For that reason, and needing to be able to understand my body's reactions quickly and accurately, he advised me off the stuff so we are working in a more controlled environment.

The treatment room was my biggest worry and it turned out to be kinda funny. The impression is that of a large hair salon. With several dozen comfy easy chair recliners lining the walls. About a dozen patients when I went in, some there for dialysis as well as some for chemo. What struck me was that everyone seemed to be very familiar with each other and the half dozen or so on the nursing staff. A lot of chit chat back and forth and good-natured greetings and well wishes to departing patients. All very friendly and casual.

They started me off with a small bag of anti-nausea stuff in the IV pick line, followed by a larger bag of the Gemcitabine. Altogether maybe an hour of IV drips. The highlight was their sandwiches and snacks and a really good cup of coffee.  The lowlight was my catheter bag springing a leak for no apparent reason while I was in the chair. Seemed like I was the only one in the room the least bit concerned about it.

Day 2.
Virtually no side effects last night. Today nothing more than a mild temp and some sniffles. Could have been from the flu shot I had following the chemo treatment.

Day 3.
Even fewer side effects than yesterday.

Day 4.
Thanksgiving Day. I won't go into the mental gymnastics I did about thankfulness today. One thing I was grateful for was there were no side effects. I did get a number of emails and texts from friends wishing me well, and housekeeper came over just to visit for a couple hours with a treat of some sugar free cookies. Was Skyped by all my girls and first wife, Cindy and we all had some very nice visits. Very grateful for that. It's not easy doing this chemo thing as a disabled old guy alone.

Day 5.
No side effects today. Well one small nausea flare up that amounted to nothing. Came about from a strong cough. Took the nausea pills and nothing more that day.

Day 6.
Cold out there dragging Bud through the woods on the power chair. ("Larry") Led to some sniffles but didn't amount to much or last long.

And so it went. Most of the first week of chemo was pretty uneventful. Monday morning, before my next treatment, I'm going in for outpatient surgery to put a Portacath thing in my neck so they can put the IV drip in their without messing with veins. Supposed to be at the hospital at 5:15. Right. We'll see.

One of the things I'm counting on to help me get through this treatment regimen, and particularly the middle two months of daily radiation, is the practice of mindfulness meditation as espoused by Jon Kabat-Zinn. I've had great success with his work in past years during periods of profound emotional pain. He has practiced this form of pain management at  the University of Massachusetts medical center for decades. Look him up and give it a try. You won't be sorry.

See you next time.

Here's what's up, based largely on my Tuesday appt with Dr. Benjamin
Nadeau. aka ChemoBoy Although I met with ChemoBoy several times while
in the hospital, this was my first visit to his clinic. He happened to
be wearing the same disgusting orange shirt he had on at our first
visit. I really wanted to rip it off and set it on fire in the trash
can.

So, here's the chemo plan. Begin on Nov 19 if possible.We're getting a
bit anxious about delaying, but have to get my infections gone before
we start. That also depends on getting a permanent vein port stuck
into my neck so they can pour in the juice more easily than with a
normal IV. I had underestimated the time involved. As it stands, his
plan is weekly for two months on Gemcitabine, the primary popular
standard chemo for pancreatic cancer.Then two months on 5-FU. (love
the name) 5-fluorouracil along with daily radiation.This is the one
that carries the most yukky side effects.Then another two months on
Gemcitabine.

I was pretty encouraged by my visit with ChemoBoy. Perhaps just
because he's been less downbeat than he was in our first meeting. He
went line by line through the mystery of the CBC blood panel results
and explained them in intelligent adult ways. CB was clear about not
getting involved in any clinical trials and not considering some of
the innovative stuff they're doing at Vanderbilt as it really doesn't
seem to work with Pancreatic Cancer. He did say though that their
practice is affiliating with a larger practice in Nashville that is
doing some more innovative things. He referred to these options as
things to consider "if it comes back". Asked him about that and what
he said was it is possible, though not terribly likely that they got
rid of all the cancer with the surgery. If pushed, he's betting there
are some cancer cells running around, likely near the former home of
the pancreas and spleen.

When I asked him why he seemed more optimistic than in our first
visit, he said that he has to be careful and conservative in initial
visits lest patients, in their hopefulness, hear something that makes
them believe he brings a cure.  When I asked him why he decided to go
ahead with chemo and radiation/chemo in spite of my present and past
infections and problems, he said he was wanting to go forward because
he "thinks he can do me some good".  Having no other place to hang my
hat, I'll take that for now.

Generally, each chemo treatment is a couple hours, though they can
last as long as six. Perhaps a good time to do some leg exercises when
I'm not scooting Larry to the barf room.

 Still have the drain in that they used in hospital to drain the
abscess and that will be there till about the 15th. Using a very cool
self administered IV thingy for potent antibiotics.  My legs have
become substantially weaker, and it's now a challenge to stand more
than a few minutes, while walking more than a few steps with walker is
pretty much out. Maybe I can improve that with exercise.

Finally, weight is down under 290, from 350 six months ago in
hospital, which we all think is a good thing. Must work on keeping my
appetite and eating good stuff to keep diabetes from running amok.

These days are pretty much eaten up by getting ready for some medical
treatment, going to the treatment, having home treatments from Nursey,
and dealing with questions that come up about previous medical
treatments. Gets old fast. But trying to keep making at least a little
progress each day