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Update and the Anniversary

April 5, 2012

In 2 days we will mark the one-year anniversary of my getting ill. Although I wasn't diagnosed with pancreatic cancer until August 1, 2011, I was extremely ill from April through August. I was hospitalized numerous times, including for removal of my gall bladder, during that period. One stay lasted 25 days.

In the past year I have learned a lot about cancer and about myself. I've gotten to know my body much better, and am quite adept at reading the signals it sends me. I still need to improve here though because I still over-eat too often. I have to control myself better in this regard. I have to eat small meals.

It's hard to say precisely what I've learned about myself in the past year, but I learned a lot. I learned that I have a very high threshold for pain and sedation medications. I learned that I am fascinated by Buddhism. I learned that I am constantly asking "why" about everything.

April 6, 2012

One more day until the anniversary of the beginning of my medical nightmare. It continues today. I figure I can hang as long as my weight is good and I have some good days every week. The reflux at night needs to go. We're getting an adjustable bed and insurance will pay for 80% of it with a prescription. The NP at VCU is writing that prescription. This should help me sleep through the night. I need to elevate my head at times.

April 7, 2012

Well, here it is: the anniversary of my getting sick. I woke up at 3 this morning and couldn't fall back asleep. A year ago I ruined Elaine's birthday by getting sick. This year will be different I hope. We're scheduled to go to Elaine's parents today to celebrate her birthday 2 days early, and Easter. This time I am not jaundiced or feeling particularly poor. I actually feel good for a guy who is slightly sleep-deprived.

April 8, 2012

Got a great night of sleep thanks to a memory foam back wedge donated by a friend. Maybe an adjustable bed isn't necessary after all! Woke up early and we finished our taxes and the yard work (I rode the John Deere) while Elaine did the grunt work with the trimmer and push mower. She's amazing. Nevertheless it was great to actually be able to participate and contribute at all. I am thankful for that.

April 9, 2012

Elaine's birthday! So naturally I was up at 4 a.m. with a splitting allergy headache that made me sick as hell. But I managed the old "Ralph and rally" from college days and was much better by the time we had to get me to chemo...did I mention this was Elaine's birthday? Do I know how to spoil a girl or what?

I handled the chemo well and at home afterwards had a nice appetite and very little discomfort. It sounds weird but I feel like I'm winning against this cancer. It's just a feeling though; I can't lean too far in either direction in the canoe ride that my life has become.

That's a good place to sign off...until then, thanks again to my family and friends for all the love and support. I can't win this fight alone, and I know I'm not alone. Feels good, even though I'm awake at 1 a.m. and can't sleep.

Sent with Writer.

Mike Markey
Email: mdmarkey@mac.com

Sent from my iPad

Quick One--A Good Day

March 31,  2012 Good day. Got Elaine her birthday present. Got to drive. Got to play catch. Got to play fetch with Clyde. Watched basketball. Ate homemade apple pie a la mode. Stayed up late.  Yes, it was a fine day.

On the mend?

Since being discharged from the hospital on 3/20, I have improved bit-by-bit each day.  My appetite is good, and I'm regaining the weight I lost in the hospital.  (I was down to 180 but am almost back to 190 now.)  I feel stronger and sturdier on my feet, but the peripheral neuropathy in my fingers has been maddening lately.  I hope it subsides soon because it really hampers my ability to type, write, or do anything requiring fine motor skills with my hands.  It's beyond a pain the ass now.  It needs to stop. The medication I take for it is helping some, and I hope it continues to dissipate.

I am very tired much of the time, particularly in the wake of chemotherapy.  I had treatment #2 of round 3 on Monday and was disconnected from it yesterday, 3/28.  That's a total of 14 out of 15 scheduled treatments.  After the next one in two weeks I get more images taken to see where we are.  The fatigue from the chemo compounds the sleepiness from the pain medications I take.  I nap a lot.  Still, I'd say I'm hanging in there fairly well given what I'm up against.  Again, family and friends continue to support me and motivate me to fight.  There aren't words to describe my thankfulness for that.

Getting worse

It's been several weeks since I last posted, and it has been an eventful few weeks. After returning from Johns Hopkins in February, I was scheduled to have my first chemotherapy treatment of Round 3 on Monday, March 5. When I woke up that morning however, I was sick as hell, vomiting and unable to take anything by mouth. It had been building order the preceding weekend and came to a head on the morning of March 5. I felt so badly that I had Elaine call to reschedule my chemo treatment. The folks at the clinic wanted me to come in for an abdominal exam, but I simply couldn't bring myself to to leave the house. So I was sick -- with varying degrees of severit -- the whole following week, from the 5th until the 12th, when I went for my rescheduled chemotherapy treatment. I was vomiting before I even left the house, but knew I couldn't skip it again or forego having an examination. So I went. After chemo on the 12th I felt relatively decent, and went to bed that evening hopeful that I had turned a corner. I woke up in the middle of the night to something far worse though. I had debilitating abdominal pain to go along with raging nausea. I could not take any medications or even swallow water without vomiting. On Wednesday, March 14 I was scheduled to have my portable chemo ball detached in the afternoon. Instead of waiting, we called the clinic and reported my condition. I said I thought I needed to be hospitalized, and that's precisely what happened. I was in the hopspital from Wed. 3/14 through Sat. 3/17. During that time I was on IV pain meds, with a pain pump, and IV anti-nausea meds and gradually begin to feel better. I also got a celiac plexus nerve block, which deadens the neves from my pancreas and which seems to be helping with pain and nausea. I was given the choice to go home yesterday, and chose to go. What a mistake! I wasn't ready and I think I knew it in the back of my mind. Still, I chose to leave. I slept great last night but woke up feeling worse than before I checked into the hospital last week. So here I am, back in the hospital for the same palliative treatment in the hopes that I can get my mojo back and function at home with oral medications and the ability to consume fluid and food without using my veins. I am very close to the end of my rope, but will continue to fight as long and as hard as I am able. The pain and nausea are completely unbearable much of the time, but I am doing my best to beat them. Thankfully I have a terrific family and dear friends who prop me up when they can. More importantly, I have an amazing woman who cares for me and loves me like no other. Elaine is the ONLY reason I'm still fighting.

Johns Hopkins

The doctor at JHU, Laheru, is fantastic.  He is going to contact my VCU oncologist, Grossman, about arranging for a genetic test for me in an effort to determine if my tumor has a particular genetic trait. If it has the trait he's looking for, Laheru thinks we may be able to tailor my chemotherapy to my particular tumor, rather than selecting chemo based on the experience of other patients (the way most chemo is chosen). The reason Laheru thinks this might work for me is because there's a history of breast cancer in my family. There is a suspected (not proven) genetic link between breast and pancreatic cancer.  Laheru is going to suggest to Grossman that they stay in close communication about my treatment and progress, with Grossman being in charge.  Laheru said he'd take over any time I ask, but for now he is happy to participate from the sidelines.  He's an impressive guy and I really like him.  Whether I change primary oncologists and put Laheru in the pilot seat depends on Grossman's response to Laheru. I only met Grossman once, but like him too (and his CV is insanely impressive).  I have a feeling he'd welcome a collaborative effort with Laheru.  We shall see.  I love having choices.  Chemo restarts Monday, 3/5. Yippee.

Waiting for the great unknown

As I mentioned in my last post, I had my MRI and CT scan on Monday, and am am currently awaiting the results. I will get them, along with a complete explanation, tomorrow when I meet Dr. Grossman for the first time. I'm looking forward to a fresh perspective and am hoping like hell for good news. It's supposed to be a rainy, dreary day, so hopefully that's not an omen or anything like one. (I don't really believe in that stuff.) Hoping for the best, preparing for the worst. That's my way. I'm still getting a second opinion at Johns Hopkins next week, and am looking forward to that as well. Hopefully I will be then cleared to go on vacation for a week. Elaine and I need some Florida. What happens after that is anyone's guess. One thing that has occupied a good deal of my thinking lately is the emotional/mental impact this whole experience is having on me. There are times when I'm keenly aware that my brain isn't as sharp as it was even 6 months ago. The impact of chemotherapy on my memory and thought processes has been significant. It frustrates me often. I also get extremely anxious and sometimes just plain sad about what the future likely holds for me. It isn't constant or a morbid obsession, but it happens and I have to cope with it; so far so good. I find room for optimism at times too. I'm glad I have my family and friends to continually prop me up when I'm down, and to laugh with me when I'm not. I've been sick for 10 months now, and I've needed every boost I've gotten from my peeps. For this I am truly thankful. Mike

Luck

So, VCU recently hired a new doctor to be the head of the entire Medical Oncology group, and he's an internationally recognized pancreatic cancer specialist, with an impressive CV...he has just started seeing patients since getting settled in Richmond, and has offered to take over for my current oncologist, even to act as a surrogate for Hopkins so I can keep getting chemo at VCU Stony Point, whose oncology nurses I absolutely adore. I am a seriously lucky guy, and very impressed with VCU's responsiveness to my complaints. I am so happy to have a choice as I move forward. Tomorrow is my 12th chemotherapy treatment and last of the current round. On Monday, 2/13, I am having both an MRI and CT scan to see what, if any, progress I have made. The new doctor, Dr. Grossman, will see me on 2/16 to deliver and explain the results, and let me know what he thinks I should do next. I can then take all of that with me to Johns Hopkins on 2/24 for a second opinion. After that, I will decide who will be my primary oncologist moving forward. I'm feeling good and optimistic. Thanks to my friends and family for all of the continued support. I'm still 195 lbs., so I foresee this fight going on for some time. I really want to win.

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