The new adventure...

          This will be the official journal of the adventure... It will be updated periodically. 


          Sometime in May or June I started experiencing what I thought was kidney stones: pain in my back on the left but I also had a couple of other symptoms highly unusual for me, night time vomiting and something called backwash (in the middle of the night, for no obvious reason, I started salivating copiously and I would feel nauseated. That is when I had emesis... Since in my previous bout with kidney stones was drinking a lot of water, that's what I did. 

          I asked my doctor if he would do a CT Scan to look for stones and he agreed. In short, they found instead a mass in the pancreas and that likely meant cancer. Indeed, after endoscopy they confirmed the diagnosis of adenocarcinoma of the pancreas with one possible nearby lymph node involved. I felt my whole world was collapsing around me. 

          After consultations and tests the surgeon decided that he could not operate because the cancer was too close to the vital structures around the pancreas (arteries, veins, lymph nodes, nerves, lymphatics, etc.) to really have a good shot at resecting it. So, the next step was to how best try to shrink it to see if they could take it out without compromising the nearby vital structures. 

          With nothing to lose and believing in science wholeheartedly, I agreed to take part in an experimental protocol involving a drug in Phase 2 of development. It is called Triapene. The idea is that the Triapene interferes with cell affecting their RNA and/or DNA and that, even though your own cells are affected, the cancer cells are affected much more. In conjunction with the Triapene, I also have daily radiation treatments directed at the pancreas. The Tiapene is give 3 times per week, alternating weeks. It is given IV over 2 hours. Radiation is given 5 days a week. 

          So far I have received 6 days of radiation and 3 days of Triapene. This is the easy week since I only get the radiation... By the way, I am being treated at THE JAMES CANCER RESEARCH CENTER at THE OHIO STATE UNIVERSITY. I guess this makes me officially a Buckeye.

          My main symptoms so far have been decreased appetite (WOW!), nausea, reflux and constipation. The effects are cumulative so let's see how it goes in the future.

          August 5th: This week  it is all radiation therapy and, to date, I am tolerating it well. They continue to monitor me carefully. I guess one of the hardest things about all this is when we go for our treatments and we sit next to little kids waiting for their turn for treatment... They are so small and innocent and it is so heart breaking. They usually do not understand what is going on and they are lovingly taken from here to there for treatment with no choice. How brave they are... And their parents all distraught yet each and everyone of them fighting for their children and holding up in spite of all the pressure.Between patients in the waiting rooms there is a silent bond between all of us. You stop thinking of "me" and think of us. We all root for each other. The staff, doctors, nurses, techs and the secretaries are all wonderful. 

August 9th

Tonight Sunday my thoughts are on the week to come. It will be a week of combined radiotherapy and chemotherapy. A tough one. I continue to be tired and nauseated but otherwise OK. My immediate family is here with me and we are having a grand time.

August 11: I am into my second day this week of combined therapy and doing OK. I sleep well, don't have much pain, am enjoying my immediate family here, am tolerating my radiation and chemo well. I am nauseated a lot and tired and have lost roughly 30 lb. I must say, there is a certain amount of nervousness looking forward to the day (in about 2 months) when they repeat the CT-scan to see if the pancreas has shrunk enough so that they can operate.

August 13:  Today is the half way of my preliminary treatment and I am holding up OK. Tomorrow is another combination day, both radio- and chemo- therapy. After I finish these treatments I am hoping for surgery to remove the pancreas. Then I will go into conventional chemotherapy...

August 15: Well, the week of combined therapy went by and I continue to have increased nausea, fatigue and now dizziness. Now I know why they always ask me if I have fallen... I have the weekend off and next week I only get radio-therapy. I am still getting great support from all of you... thanks! 

August 21: It is better for me and you to add comments on a weekly basis since things do not change a lot day by day. The good news is that I completed my fourth week of radiation therapy and have the weekend off. Next week is significant because I will complete the IV chemotherapy treatment with Triapene and then I will only have three more days of radiation therapy. After that we wait about a month and they repeat the CT-scan. If they were able to shrink the pancreas enough, they will then operate to remove it. Then it would be more conventional chemo-therapy. If it did not shrink all the doctors have advised me to travel and do what I like to do and skip therapy... Obviously, we are hoping for the shrinking and operation because that means I have a chance. I continue with some fatigue and nausea but it is better than last week. It is likely because I haven't had chemo this week.

I continuously thank all of you for your heart-felt support.

As an addendum, I cannot begin to tell you how going through this experience  has renewed my faith in my fellow men and women. The health care providers, from the volunteers to the nurses, nurses aides, medical doctors and nurse practitioners and all their support staff have been beyond caring and nice. The nurses are like angels always encouraging, caring, gentle and hard working. They carry all the detailed work, very often overworked. 

The other aspect which has been sort of a surprise has been the comradeship that develops among all of us patients. We care for each other in a very special way and we hope for the best for all of them. The toughest patients are the children... I can hardly contain my tears when I see them waiting patiently for their turn at treatment. Why them in particular? There are some things in life that I will never ever understand... 

August 28: Well, I just completed my  five week course of experimental chemotherapy and thank goodness for Medicare. They stepped in when United Health Care dropped me. I am all for Health Care Reform... I can't begin to tell you how relieved I am not to have to have IV's in for a while. Next week they will give me concentrated radiation treatments directed at the pancreas specifically. The staff in radiation gave me a special T-shirt emblematic of people who support cancer research. There is a huge fundraising event this weekend called Pelotonia which is a bike ride spearheaded by Lance Armstrong and a lot of people are participating. After next week I will have 4 to 5 weeks to relax and work before crunch time comes along. I continue to feel very fortunate with all of you as friends. My wife Deanna is more than I could ever ask for and is always at my side cheerleading. 

September 3rd: Our first milestone... yesterday was my last day for radiation therapy and I am very glad. I actually tolerated it very well. Again, I can't begin to tell you how wonderful the whole group of techs was as well as my doctors, Dr. Kim and Dr. Gaioui. There is a very small but touching ceremony at the end of the treatment. We get to ring a bell and everybody claps, cheers you and wishes the best for you. It probably has a lot more meaning if you are part of the group. 

Now I get a 5 week break during which my nausea will recede and I will gain some energy. In late September I will have a repeat CT-scan and that will basically determine my future. If the pancreas has shrunk then they will operate and that will be followed by 6 months of conventional chemo-therapy. If it did not shrink enough, well, then it is just a matter of time...

I keep thanking all of you for your continued support. I try to stay cheerful and I keep busy. That helps a lot. I am blessed with a wonderful wife who is also my very best friend and soul mate. 

September 16: Not much happening these days, just waiting to be re tested (CT-scan) on September 28 to see if the pancreas is shrunken enough to operate and remove it. After that I meet with my oncologist to see what the future will bring... Sad to hear about Patrick Swaize. I have the same cancer.  Spirit wise I am still holding up as is my wife. I am tired all the time and my appetite has not returned although I am not nauseated.  Our very good friends Ralph and Valerie Mantecon came to visit from California and we had a great time.  We even went to the USC vs. OSU football game and it was a nail biter. 

October 2: Well, the "day of judgement" came and went and the picture is not any clearer. There was bad news and there was good news.  How much of the "good" news is palliative and how much is for real is to be seen.  We met with my doctor, Dr. Saab, a very bright and caring man specializing in oncology and he laid it out in the following manner. The bad news is that the pancreas did not shrink enough to allow for its surgical removal... In addition, they found a small metastasis in the liver which means it is spreading. On the bright side of things is that the tumor did shrink in response to the radiation therapy and the experimental chemotherapy which leads him to believe that the tumor is somewhat sensitive to treatment and, therefore, may respond to conventional chemotherapy in the sense that it will likely prolong survival and maybe improve my condition, in general (pain, nausea, fatigue, etc.). 

So, where do we stand? He recommended we undergo conventional chemotherapy starting this Monday and it will be continuous chemotherapy for a long time. It is supposedly better tolerated than the previous chemotherapy and it is only once every two weeks. They will repeat the CT-scan in a couple of months to see if indeed there is response. At this point we can only hope for the best. 

Overall, at least there is some hope that my demise will be delayed as long as possible while maintaining a reasonable lifestyle. 

I continue to thank all of you for your good "vibes' and from the response I have gotten from all of you I should be cured 10 times over. In other words, thank you so much for your continued support. 

For the time being, the main problems are back pain and fatigue. Up to now the pain medications work to some degree and the doctor feels that this will get better as well as the fatigue issue. Although I get discouraged at times, most of the time I remain guardedly optimistic.

October 7: On Monday I started my new chemotherapy and seemed to have tolerated it OK, at least till Tuesday. Now I am experiencing the effects of it and they are nausea, shaking, and abdominal discomfort. I am still working and it helps me keep distracted.   

October 16: Well, not a very good last 10 days... It has been pretty rough. It all started last Monday when I got up only to realize I was terribly dizzy and could pass out any second.  Deanna got me to the ER at Ohio State University and it was a rough go from the start. First of all my diagnosis should have been severe dehydration but the ER docs got it in their mind that it was a likely pulmonary embolus... The short of it is that I was very frustrated and disappointed in the care I received except for that of the nurses and their assistants. On Wednesday they released me and I came back home.  I have has zero energy hence my inability to keep you abreast. I also had a talk with the attending oncologist who was very straight forward and summed it up for me: it is just a matter of short time. It saddens me very much because I feel I have let so many of you down. In spite of this we will hang in there for a while. I ask you to be understanding on the course this has taken. I love all of you. I am now at home trying to keep up with my fluids and eating in spite of having zero desire to do so. Juan

October 27: Well, a couple of weeks have gone by and it is time to re start the chemotherapy at a much reduced dose initially. I continue very tired and with back pain but the back pain may get better after this Friday when I get ablation endoscopy to the nerves that serve that area. Hopefully it will work. The tiredness, who knows. It may be from the pain medications and the anemia. The chemo, if tolerated, will be every other Monday indefinitely. 

My son Joe came out for a few days from Montana and it was a great visit. It was a picker upper... Birthdays are coming up. My wife Deanna's is November 1st (all Saints Days) and mine is the 12th. We will be visited by Osito Joe Bustamante, Merle Huston and Coach Miller. We will also be visited by three of Deanna's sisters. On my birthday my son Juan Miguel will be here. I had to quit working and that hurt a lot. I just didn't have the energy anymore. 

In a couple of weeks I will add a page of pictures of our friends other than classmates... long overdue. 

The weather is changing and we have had one of the most beautiful and spectacular Fall tree color changes ever. The colors have been very vibrant and varied from dark red to the yellowest of yellow. 

I will try to be more consistent in keeping up the news. Thank all of you for your love and good wishes. Juan

November 14: Wow! What a birthday week. I have never had a greater birthday than my 70th. The outpouring of love from family, friends, classmates and patients was overwhelming. Thank you all for your love and support. 

It started with the visit by high school buddies Joe Bustamante and Merle Huston and by our senior year coach George Miller. As expected we talked about old times at the good old AHS and our classmates, we embellished everything and had a great brunch of strawberry soup and pancakes.  They are great guys and I only wish I would have kept in closer contact with them and the rest of our class throughout the years. We are a great class and we talked about how proud we are of being part of this class of '57. I received telephone calls and cards galore. Thank you all. 

We celebrated Deanna's birthday although I couldn't do much because of the fatigue. Her three sisters, Denise, Renee and Anita came to celebrate and celebrate we did. They are a hoot! Always happy, smiling, laughing and talking. I got more than a wife, I got me another very loving family.

I got my second chemo treatment and it went OK. I have been very tired and dizzy at times but with less pain. I get another treatment one a week from this Monday. 

Then my son Joe came driving from Florida on his way to Montana. We had a great time and his visit overlapped with my son Juan M. being here along with my sister Lolita and my bro in law Eduardo. We celebrated with cake and rice pudding and had a great time. Ed plays the most beautiful guitar I have ever heard, all by ear and with a lot of feeling.

We are still celebrating and today we will watch the Iowa (my wife's Alma Mater) vs. Ohio State game.

November 30: Well, another couple of weeks gone by and a week after my last chemtherapy.  It seems that the pattern is that for a week after chemo I feel pretty bad with almost no energy and nauseated. About today I will begin to feel better. Tomorrow I have a repeat CT-scan to see how much the cancer has spread... In general, the last two weeks have been  relatively good with continued great support from my wife, family and friends. I've had more visitors including my brother Alex from Houston, my good friend Rico-man from Orlando, my oldest son Juan Miguel from Maryland and Dino and his lovely children from here in Columbus.  

It was a sad couple of weeks in that I had to wrap up closing my office and withdrawing from practice.  We had a very good Thanksgiving with a simple but delicious meal of turkey, a new dressing which exceeded all expectations and we are willing to share the recipe, a cornmeal like dish prepared by our good friend Steve, potatoes au gratin and bananas Foster. I couldn't enjoy it all due to the nausea but Deanna, Steve and my daughter Vicki did. 

We made the decision to travel to Helena, Montana to spend Xmas with our older kids and my two grand daughters so we will be there from the 23rd to the 29th of December. I may skip chemo that week... 

Well, the college football season is winding down and it looks like my medical school Alma Matter will be playing against Ohio State so I have been polishing my Quack, Quack cheer and even ordered an Oregon sweatshirt. 

I heard via my sister Lolita that a dear alum of our school of several generations after ours also has advanced cancer. Some of you amy remember Coach Lazcano. It is his daughter Marta. I will ask my sister for her address so I can write to her on behalf of our class. Our good friend Juanito Duran is also struggling with diabetes but he is cheerful as usual when I have spoken to him. 

Winter has certainly arrived here in Columbus and we had our first snow flakes on the morning of Thanksgiving. 

I want to tell you once more how much I appreciate your continued support. The battle has been pretty tough but it has shown me a totally new side of life. 

I love you all.         

December 8, 2009: Yesterday was a very good day, in spite of the fact that it was chemo day. We met with my oncologist, Dr. Saab, and he went over the latest CT-scan with us. Basically it showed minimal change which for this type of cancer is very good. It is progressing but at a slow rate. Now, I am more of a spiritual person than a religious one, but I can assure all of you that your good wishes and prayers have all contributed to making this possible. There is so much love coming from all of you that we have mounted a great fight so far. Thank you all again. 

I tolerated the chemo well and today I feel fine. If I feel bad it will be tomorrow evening and then the next few days. I have had my daughter Linda from L.A. with us this week and it has been great. Winter has definitely arrived in Ohio with cold temperatures and even a little snow. On the 23rd we will fly out to Montana to spend Xmas with my oldest kids and with my grand daughters.

Juan       

January 4th, 2010: It has been a while since I have updated the "adventure" and part of it due to plain fatigue and relative routine. Since I last updated the sight Deanna and I went to Helena, Montana to spend Xmas with my sons Juan Miguel and Joe, Veronica, my daughter Linda and my two most lovely granddaughters Caroline and Natalie.  The trip  out to Montana went very well although we almost froze to death in the Denver airport. In order to have some energy they allowed me to skip one of the chemo treatments which I resumed upon our return to Columbus. 

I thank all of you very much for your continued support without which I likely would have given up already. For the time being we continue to put up a good fight... 

Montana was very cold but the locals have adapted quite well and we did well. We visited the fantastically beautiful Cathedral there and were mesmerized by its beauty. We spent beautiful time with part of our family and had no encounters with bears. 

This month I will get a followup CT-scan to see how much this darned cancer is spreading. My main challenge right now is eating. Without appetite I have to force myself to eat. Things I used to crave now turn me off and my taste is down to salty and sweet... 

Will try to update as soon as they let me know about the CT results. Love to all, Juan

February 1st, 2010: It has been a long time since I updated the site and I apologize for this. Frankly, things have been rough and we struggle day by day. I continue to receive unbelievable support from all of you and this helps a lot. Since the last time I wrote they have resumed the chemotherapy and they repeated the CT-scan. The chemo has hit me hard again and I am absolutely without energy or appetite. I continue to lose weight and I am beginning to look skinny, something I have not done in over 50 years... The scan showed little advance on the cancer but they forgot to tell my body that I am supposed to feel better... Since changes are slow I will likely update the site every month. Hope all of you are doing very well. Love to all.