Improvement

After several weeks of anxiety, anger, and depression, I have finally come to peace with the need to change oncologists.  I am looking forward to my appointment with Johns Hopkins on 2/24 with Dr.  Dan Laheru.  I feel like I'm going to the best doctor at the best clinic in the world for pancreatic cancer.  It's difficult not to feel a little upbeat about that.   Still, I don't expect my prognosis to change dramatically.  Nor do I expect miracles.  I am looking forward to better and competent treatment, albeit in Baltimore rather than local.  My weight has been fairly constant throughout this second round of chemotherapy.  I am typically about 195 lbs.  My appetite is good and I've learned to adjust my eating habits to avoid discomfort to the extent possible.  Of course, this routine may all get changed after my visit to JHU, but I am enjoying some consistency in my bodily functions and energy level.  I still get very sad and anxious, but my medications help with that, and I've learned how to use them as well, without feeling like a junkie.  All in all I would say I'm doing a lot better than when I wrote my previous entry. I'll take it.

Time to change...

Tomorrow (2/11) I have chemo treatment #10 of 12. I usually have chemo on Tuesdays, but this week it's Wednesday. I am anxious about it for all the same reasons I'm anxious before chemo. Will I barf? Will I be able to eat and sleep tomorrow night, etc. I am particularly anxious this time because if have decided that I must change oncologists. My current oncologist has me on the right chemo regimen, and is a very nice, personable man. However, I do not care for his communication style (or lack thereof). Without going into great detail, I have lost confidence in him because of something he said during my last office visit. He said that Cyberknife and radiation generally are ineffective against pancreatic cancer. This is completely inaccurate as far as I can tell...Johns Hopkins University appears to have a completely contrary view. I emailed my oncologist about this apparent conflicting information, and I have yet to get a reply. He has responded to 1 of the 5 email messages I have sent him since I began with him in August. T me this is unacceptable. So, I am shopping for a new oncologist, although I intend to complete this round of chemotherapy to get the benefit of it. It stopped the growth of the cancer before, and may actually shrink the tumors this time. I think it would be foolish to stop treatment right in the middle, especially since it is clear that I am receiving the right chemotherapy. It also gives me time to gather my medical records for the next phase. I have intended to seek a second opinion at Johns Hopkins, and still may, but am now also considering Georgetown University Hospital, which has a similar approach to pancreatic disease as Hopkins. It also happens to be closer to my home. Georgetown is a fine institution, and my late grandfather was on staff there for a long, long time. I've done some reading about it, and am now somewhat conflicted about where to go next. If anyone who reds this has an informed view on the merits of one or the other, please share. Thanks! http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/pancreatic_cancer/index.html http://m.georgetownuniversityhospital.org/body_dept_home.cfm?id=489&CFID=148607579&CFTOKEN=19347642 Meanwhile, I will soldier on with my current chemo regimen...tomorrow. Ugh.

MD News - Clinical Trials are Key to Doubling the Survival Rate for Pancreatic Cancer

http://www.mdnews.com/news/2012_01/clinical-trials-are-key-to-doubling-the-survival#.Twmy5XuHy4c.mailto

Mike Markey
Email: mdmarkey@mac.com

Pancreatic Cancer | Cancer.Net

Pancreatic Cancer | Cancer.Net

2011 - A Good Year?

What a year! I've spent a fair amount time reflecting upon 2011, and have concluded that it was actually a good year.

I suffered a lot of physical and emotional pain starting in early April and it continues today; I've just learned how to cope with it and get on with life as best I can. I was in and out of the hospital on a bi-weekly basis it seems (once for 25 days) from April through August. On August 1 I went under anesthesia thinking I was getting the Whipple procedure to fix my bile and pancreatic duct problem, and woke up to the news that I have stage 4 pancreatic cancer. That was a brutal day for Elaine and I. I will never forget it. Since then, I've been receiving chemotherapy and am ready to take it as long as my body can stand it.

Anyway, my point is that 2011 was a good year. Why? Because on April 7 I became severely jaundiced and the medical search for answers led the docs to the cancer eventually (slower than I would have liked, but that is the nature of pancreatic cancer...it hides). Had I not developed the bile duct strictures that caused me to turn yellow, I could still be walking around with untreated, metastasized cancer, or dead. So it was a blessing that my body sounded the alarm when it did. Yes, the whole process (surgeries, tests, hospitalization, over-medication by hospital psychiatrists) was gut-wrenching, but I learned a lot about myself, my marriage, and my family and friends along the way. I've been able to re-connect with people from my past and discovered how lucky I am to have so many great friends who care about me. I'm closer to my family than ever before, and I've discovered the importance of living in the moment and letting go...two things I have struggled with my whole life. My experience this past year has helped me finally win that struggle.

I'm looking forward to a quiet New Year's Eve at home with my baby in front of the fire, and writing another one of these on December 31, 2012...Happy New Year!

Article of interest

Just a link to an article discussing the 40 years since Pres. Nixon and Congress tacitly declared war on cancer.

Feeling good after chemo treatment 9 of 12

Yesterday I had my 9th of 12 scheduled treatments, and it went fairly smoothly, although it was an especially long day because I had an appointment with my oncologist before the treatment began. Since he was 45 minutes behind schedule, I didn't get home until 5 pm. Aside from that, I handled the treatment well, and am still handling it. My appetite was good last night, having discovered that mashed potatoes (easy on the butter) are THE magical post-chemo food elixir I've been searching for (or for which I was searching for you preposition nazis out there). I slept untile almost 4:30 this morning and am still feeling stable. I'm fatigued from the chemo, but there's no way around that. Caffeine in large quantities only brings nausea. I'm looking forward to a restful, uneventful day. When I saw my oncologis yesterday, he marked several times how good I look and how happy he is to see me gaining weight. He said an oncologist is the only doctor who will applaud weight gain. I'm 202 lbs. after a decade at 180-185. I'd ordinarily be pissed at being "overweight" but I need all the buffer I can get, and with the cold sensitivity from the oxaliplatin, the extra insulation isn't a bad thing. All of this has bolstered my optimism about beating this damn cancer. Christmas was great, and peaceful. I hope everyone who reads this (and who celebrates) did as well. I will end this with a quote I really like: "It is not length of life, but depth of life." --Ralph Waldo Emerson

Inner Strength

"The good Lord gave you a body that can stand most anything. It's your mind you have to convince." --Vince Lombardi

This is a good one for me. That's all. Hope everyone is enjoying the holiday season. I am. So far so good anyway. I'm still fatigued a bit, but my appetite and energy levels are returning to normal, just in time for Christmas. This makes me happy. Next chemo is 12/27, so I can enjoy the next week, I hope...

Peace.

Chemo today

Today was the 8th of 12 treatments, and the second of Round 2. The nurse practitioner at VCU Stony Point has found the perfect combination of anti-emetics (puke and nausea fighting meds) so that today was by far the least challenging treatment I've had so far. Of course, it's only 5:30 pm and I have slow drip of 5-FU for the next 2 days, so the treatment isn't over by a long shot. I'm going the optimistic route and thinking I will sleep tonight (as well as one can sleep with a needle in one's chest) and there will be no puking. I'm eating drop biscuits and vanilla pudding as I type and feel decent given what went into me today. It's weird, but I'm starting to get used to this chemo thing. Hopefully this time the tumors will shrink and give me some hope going forward. I'm talking with my oncologist about the cyberknife when I see him in 2 weeks, before the next treatment. It's a different type of treatment involving radiation, but it's an effective non-surgical way to zero in and attack the tumors. The question is whether I'm a candidate for that (and whether insurance will cover it). We shall see soon enough. I'm tired so that's it for this über-interesting post (rolling my eyes).

Ups and downs

Last night and this morning were awful.  I've been feeling fantastic lately, but woke up at about midnight feeling completely dreadful, and that lasted through to about 11 am.  I'm starting to feel better now, but it was a rude wake up after what seemed like weeks of smooth sailing.  I haven't been sleeping too well lately, but waking up last night at midnight was the last straw.  I finally took a nap this morning and that helped, but I am very aware that I do not get enough sleep on a regular basis.  It's starting to impair my already impaired thinking, and it makes it more difficult to deal with my anxiety issues (for which I take meds on a daily basis).

I don't know why I'm writing any of this, other than perhaps to remind myself that as I move through this battle, I'm going to have good days and bad days.  I have to be ready for both.  The bad days have been fewer lately, and I very much want that to continue.  Anyway, I guess I'm just bitching and moaning because today hasn't been all too pleasant.  It's dreary and raining buckets here as well.  That doesn't exactly enhance the ambiance around here.

Here's hoping for a better tonight and tomorrow...