Hi Everyone,
Amanda's wedding was beautiful! I know many of you are eager for pictures and can't understand why I don't put any new ones up. The truth is that for some odd reason we've always had a hard time putting pictures up on this site. Amanda was the one who helped me do it and she just got too busy with school, work and wedding. Now she doesn't live with me anymore so it's even harder. I'm going to be switching to a more "user friendly" site that I can manage easily without depending on my kids for help. The hospital recommends one called "caring bridge." I've got a lot going on now so it's not my first priority, but believe me, I will try very hard to get to doing it.
As I said, the wedding was beautiful. You hear horror stories of things that can go wrong. We had a couple of little things, but nothing horrible. The bridal party was late to the reception by about 40 minutes. They got held up taking pictures and the driver got a little lost downtown. I forgot to bring the check to pay the caterer which was embarrassing, but he was very nice about it and just let me pay him Sunday morning. It also helped that he lives 5 doors down from me so the old saying, "I know where you live," was the truth.
Now I am busy getting my house ready to put on the market. We can no longer afford to stay here without my income and it's too much for us anyway. It will be much easier for Mike if I help him transition to the next place. I pray to God for the strength I'm going to need to accomplish it. The kids said they will help when the time comes so I'm counting on them. I know how much energy it takes to move. If you know of anyone looking for a house I think we've got a good one. We have 5 bedrooms and 4and 1/2 baths. It's a great house for a big family!
Jaime is just about ready to POP! She's due the 19th, but is 38 wks now so she could really go anytime. We are all looking forward to the new arrival. Having worked at a children's hospital all these years has me scared about RSV season. This is a horrible time of year to have a new baby. RSV is a respiratory virus that goes around between October and May every year like flu season. Adults can get it too, but for us it would just give us really bad cold symptoms. A small child can get so sick that they could require hospitalization, oxygen and even mechanical ventilation. Believe me, I've had my fill of RSV over the years. It usually meant all the overtime you could ever want, but also 12 hour shifts filled with running like an idiot treating these little ones and by the end of the shift you were wondering how you were going to have the energy to come back the next day! I don't think being on the other end will be any better.
Last, but not least I will gladly tell you that the CTscan from Oct. 14th were good :) The original pancreatic tumor shrunk a little, the new pancreatic tumor shrunk considerably and the liver remains "quiet." Meaning there is no new tumors and the old ones are pretty much gone. My doc is hoping that this chemo treatment I'm on will continue to give us results up to January. It seems that if a treatment works, it continues to work for roughly 7 months. After that the CA gets smart and figures out a way to grow despite the treatment. Also, the cancer (CA) will eventually just become immune to all chemo after a while. Let's just hope that doesn't happen for a long time for me. Mike needs me so much right now and my girls need me too. The new baby and I need quite a bit of time to get fully acquainted. I have yet to figure out what things I would like to do, besides babysitting, throughout my retirement.
I thank everyone who visits this site and who is praying for my family and I. It means the world to me to know that there are people out there that look for updates and care that much about me. Even if you do get a bit frustrated about pictures (or lack of)! Hang in there. I'll get it figured out!
Much love!
Sharon
10-3-10
Hello all and happy fall! Amanda's wedding (10-23) is right around the corner and we are all getting excited.
Jaime is filling out nicely as her baby is due in November.(11-19) I can hardly wait for that! Oh...I do have a major change in my life. I stopped working. I never would have thought this just a month ago, but that's how quickly the decision was made.
I had a pretty bad week following my last visit to CTCA meaning that the side effects were tough. I was in quite a bit of pain for about a week. I had to call off a couple days from work and it sort of got me thinking. That wasn't entirely the only deciding factor though. In order to go on disability through Social Security, you have to quit working no exceptions. You then could have up to a 5 month waiting period for your first check. 5 months down the road is quite a long time for someone in my shoes. We figured that the best thing for us to do is for me to quit working now since disability was very likely to be in my future.
Since my illness and transition to part-time, it's become difficult to afford living in our house. The fund raiser helped out greatly, but that money won't last forever, so that was the other major decision we made. We decided to get ready to sell our house. We love our home and our neighbors, but the writing is on the wall. We're going to wait until after the wedding, but that's coming up quickly so the fact that I had my last day at work last Wed. is a good thing. Now I will have time to work in my house.
I know I went on and on about how much I loved CTCA, but I haven't been back since my treatment Sept 3rd. I may be going back before the end of the year, but I really found the traveling difficult and I love my oncologist here at UH. I always kept her in the loop, but it wasn't the same. The only thing I really need from CTCA is the naturopath doctor that I had there. They're the ones who specialize in the supplements like vitamins or natural methods of healing. They believe that while you're going through chemotherapy you need to keep the immune system strong since it takes such beating from the chemo. Mike and I both strongly agree with this thinking. I found a doctor in Brunswick that will work with me, but she admitted that she usually refers cancer patients to CTCA. I am waiting to talk with my doc from CTCA and will ask him if he would be willing to work with her to help make her feel more confident in the oncology area. I think it could work. The other thing with CTCA is that I just don't think we'll be able to afford the out of pocket money next year.
My next CT scan is Oct 14th. The last set that I had done at CTCA showed no improvement, but also nothing worse so that equals stable. I also had a full body PET scan that showed pretty much the same. I was glad to know that the cancer is contained to my liver and pancreas just as we thought.
Well that's about it for now. Thanks again for keeping me and my family in your thoughts and prayers. I don't think I would be here writing to you today if it weren't for all the people have praying for me. Hope you have a wonderful fall. I don't meet many people who don't agree that it's a great time of the year!
God Bless!
Sharon
8/15/10
Hi Everyone,
Mike and I just got back from our trip to CTCA. We told everyone it was located in Chicago, but it actually sits 30 miles from Chicago and 30 miles from Milwaukee, Wisconsin. We were just 3 miles from the Wisconsin boarder. We stayed at a Country Inn and I have no complaints about the accommodations. It was a very clean, cozy hotel with an awesome staff and a great complimentary breakfast each morning. They also had coin laundry which I thought was a plus if you needed it. There is a shopping plaza right across the street with a grocery store, Kmart, dollar store, and thrift store. Also a couple of fast food joints within walking distance. If you don't have any idea what a CTCA facility is like, I would suggest you google it and see what it's all about. One thing I was curious about was how this place got started. I found something on their site that explained just that so I thought I would share with you:
History
Learn More About the History of CTCA: Chat with Us | Email Us
The origins of Cancer Treatment Centers of America (CTCA) treatment philosophy date back to the early 1980s following the tragic death of Mary Brown Stephenson from cancer. Mrs. Stephenson was the beloved mother of our founder Richard J Stephenson.
After his mother's diagnosis, Mr. Stephenson embarked on a mission to find the most advanced and effective cancer treatments available. He hoped his efforts would enable his mother to recover and remain an integral, irreplaceable part of his life and the lives of his children.
The Stephensons were sorely disappointed by what they found. What were regarded as world-renowned cancer treatment facilities were singularly focused on the clinical and technical aspects of cancer treatment, ignoring the individual needs of the patient and the multi-faceted nature of the disease. Tragically Mrs. Stephenson did not live to watch her grandchildren grow and mature.
To keep his mother's memory and spirit alive, Richard vowed to change the face of cancer care. He selected a group of outstanding oncologists and challenged them to find a way to deliver whole-person cancer treatment in a compassionate, nurturing environment.
Richard founded a facility in northern Illinois, where the CTCA model of care was first implemented. He ensured its success by keeping his staff members focused on one thing—making a difference in the lives of people living with cancer.
Since then, the experts at CTCA have been committed to revolutionizing cancer care. As a result, Cancer Treatment Centers of America is the only cancer treatment hospital of its kind in the nation.
By implementing the Mother Standard® of care, CTCA cancer doctors provide patients with the same warmth, unconditional support and respect we would extend to our own mothers, fathers, sisters, brothers, or other loved ones.
In caring for patients like family, our clinicians take an aggressive and individualized approach to cancer treatment. They combine the latest medical, surgical and radiation therapies with supportive therapies like nutrition, naturopathic medicine, mind-body medicine, oncology rehabilitation, and spiritual support. This whole-person approach gives those fighting cancer new options and hope.
The CTCA network of treatment facilities includes cancer hospitals in Zion, Illinois, Philadelphia, Pennsylvania, Tulsa, Oklahoma, and Goodyear, Arizona, as well as an outpatient practice in Seattle, Washington.
So this pretty much explains how/why CTCA came to be. I love my doctor here at home at the Ireland CA center, but I felt like I was missing the care of the whole me.
I am scheduled to go back on 9/2/10. My new oncologist continued the Abraxane treatment that I started on 7/8/10, but will scan me again when I come out to see if it's working. The scan that I had last week showed pretty much no change from the June scan. They gave me a treatment of Abraxane while I was there and if there's still no change by 9/2, we will move on to something else. She did explain to me that my cancer will become more resistant to chemo with recurrent treatment and there aren't many chemos left to try. That news was hard to take. I was also disappointed to learn that I'm likely a candidate for the intra-arterial chemo treatment that I was interested in getting. This is because I had the Sutent chemo back in Sept. and it fried the vasculature that I would need for the intra-arterial to work. Also is the problem of my tumor being attached to the aorta. There is a risk of nicking that vessel and potential poorly controlled bleeding.
Even with the disappointing facts, the trip was very worth while. The hospital is amazing! The "multi-disciplinary" or "integrated cancer care" approach is very refreshing. I really like the support of the other team members in dealing with issues such as nutrition, mindset, exercise, etc. Everything is under one roof. I was placed on supplements to boost my immune system and met with the dietician. Before or after my chemo treatment, I'm free to roam around and consult with any of these other areas. They have a beautiful gym to work out in, an awesome cafeteria which doesn't put out your typical "cafeteria food." I got a pedicure while I was there for only $18.00. If you have to have this disease and go through treatment, why not make it more tolerable? They will pay for my flight there for treatments and the hotel will only cost me $40.00 a night. Most of the time I shouldn't require being there more than 1 night. I can take someone with me and although they would have to pay their own airfare, meals at the cafeteria are included and they can take part in all the services offered to me. Example: Massage. Yep! I'm signing up for that at my next appt.
I will see my doc back at UH next Thursday and will explain to her why I want to be treated at CTCA. I gotta believe she's gonna miss me and I her, but I think I'm better off going to CTCA for now. UH will always be there along with my doc if I should choose to come back.
We had Jaime's baby shower yesterday and with the help of my very dear close friends, it went off without a hitch! She received an array of cute baby clothes and other needed items to help get them started. Now I have Amanda's shower to prepare for, the wedding and then our sweet little grand-daughter's arrival. I certainly have a lot to live for and hope that God agrees! No matter what the doctors have to say, God is the great physician and can change the course I've been on at any time. I have to believe that if I want to stay positive.
Hope you all have a great "end of summer" and continue to pray along with my family and I that I will see many more summers :) Take care and God bless.
7/25/10
Wow! 2 months have gone by since my last post! Sorry to all of you who actually check this regularly looking for news. I have been lacking motivation somewhat lately. I did run the race June 12th and did pretty well. I believe the race here in Cleveland raised approx. $145,000 for PC. I ran it in just under a 10min mile, however, that was the last time I ran. June 17th I got some more bad news so I guess it's just a psychological thing, but I just haven't felt like running yet. The scan I got on June 15th shows that my pancreas tumor is larger and there is a new one (about a centimeter) next to it. My liver is stable with 1 tumor remaining and the same size. I explained to my doctor here that I think it was time for a second opinion on treatment and she was fine with that. I explained that I wanted to check out The Cancer Treatment Centers of America (CTCA) because I had heard about 2 patients, both stage 4 pancreatic CA that survived after being treated there. It was in her opinion that they weren't as good an option for me as John's Hopkins in Baltimore and that if it were up to her, I would go there. So Mike and I drove out to Baltimore 6/27. I'm convinced that they got me out there quickly because I was willing to participate in one of their clinical trials. After we listened to the doctor in charge of the trial, I decided it wasn't for me. The response rate was low, side effects many, and they wouldn't get a CT scan to check for progress for several weeks. That being said, she explained that I should expect my cancer to progress because this treatment wouldn't work quickly if at all. That was about all I needed to hear. We left the next day pretty disappointed.
Since coming home from there, I have started a new chemo here at UH. It's called Abraxane, is a breast CA drug and I will loose my hair this time. We purchased 3 wigs for the occasion. I wouldn't have except it was buy 2, get 1 free and the lady gave us a really awesome deal! I do have a plan B. On 8/8/10 Mike and I will fly out to Chicago to check out CTCA. I want to go back to my original plan because I just keep getting this nagging feeling that they have something out there for me. I may be wrong, but I feel it's worth checking out. If my results should go in the wrong direction again, there is also MD Anderson in Houston. Now that's a long way from home so although they were just voted "The best CA Hospital," I will keep them in my back pocket. None of this is to say that UH isn't good, but so far, they haven't been able to shrink my pancreas tumor and that is my #1 goal right now.
The family is doing well despite our recent disappointment. Jaime is starting to show and we found out on 6/25 that she's having a girl! Amanda's wedding is only 3 months away! We are all excited for both events. Jaime's wedding should be January of next year, but that is going to be flexible based on how she's feeling. It can always be pushed a little later if need be. The weather may also be a lot nicer!
If you're visiting this site then you are surely thinking of me and
my family and for that I thank you. Thank you again for your prayers that God surely hears and will hopefully answer the way we would like. Blessings to you all!
5/25/10
This past weekend, Jaime, Amanda and myself went to a seminar put on by PANCAN (Pancreatic Cancer Action Network). It was in Pittsburg PA. Andrew drove since this is his hometown and we were graciously invited to stay with his parents. Mr. Gatti, "Big Dog" as he is referred to by his boys, made us an excellent dinner and Mrs. Gatti, "Mama G" made breakfast. They are really great people and Amanda knows she is lucky to be part of such a loving family. It also makes Mike and I really happy to know she has a wonderful new family in addition to ours.
The conference was, as one of my good friends referred to it, full of the good, the bad and the ugly. Amanda got depressed pretty quick. As for me, I felt the same soon after. As Jaime put it, it was like removing a scab. All those feelings we felt soon after diagnosis came back. I know that I will shake it off soon as I get busy with things going on around home. There's so much to do between work, treatments and home that II really don't have time to pout.
All in all it was a good experience. We did learn a lot and I got to meet others with my disease. Many of them either already had, or were preparing for surgery so I didn't really have much in common with them. If you remember from earlier, my tumor is inoperable since I'm stage 4. One of the surgeons I met there said that even if they would consider doing surgery on me,(Huge If!) there's a chance that without chemo treatments, I could have a major set back. Mike and I both agree that it's probably better not to get greedy and let well enough alone.
As I mentioned in my earlier post, my doctor is pleased with my progress. I think she's impressed that I can tolerate the chemo for this long without many side effects. I'm working part-time, trying to squeeze in exercise and look decent (according to her) for what I'm going through. Oh, and I almost forgot...I'm keeping weight on. Yep... that part I'm not so enthused about. My tumor marker did go up a little from 3.17 to 4.89, but that's still considered very low and she did warn me that it would probably bounce up and down now. I'm not supposed to worry about it. I have been really tired lately, but I just have to try every day to get something done and not be too hard on myself when I don't.
Future events: On June 12th, I will participate in PANCAN's "Purple Stride" race/walk to benefit Pancreatic CA research. Rite now, Pancreatic CA receives very little research money when compared to breast CA and others. Hopefully this will change in the future. I'm going to attempt to run the 5K or 3 mile race. My coworkers, (Sara and Andy and hopefully Sue if she can get off), my future son in-laws, Andrew and Matt, and my girls will be running or walking with me. If you would like to participate in the race or make a donation to PANCAN, check out the PANCAN.org website and follow link to the Purple Stride event. My team is named "Spank the Panc." My friend Sara from the Rainbow PFT lab came up with the name and I love it! I hope to get more involved with this organization as Pancreatic CA is in real need of support. Hopefully some real money will be generated for research and our families can have a better prognosis than I do.
Thanks for visiting my site and thanks also for your prayers and support:)
5/17/10
April showers bring May flowers...and lots of new stuff going on at the Estok house. Jaime announced recently that she and her fiance, Matt are expecting a baby! The baby is due November 19th and their wedding date is tentatively set for January 22nd. Mike and I are very excited! I have prayed that I would get to be at my girl's weddings and get to see grandchildren. I can't believe how well God listens to me. My brother Ken asked me to pray for his health since I seem to have such a good connection with God!
I saw my doctor on May 13th and she is very pleased with how I'm doing. The treatment is still working and she thinks I'm tolerating it well. She said that I could be the "poster child" for my cancer treatment! The results of the CT scan were good. Out of 4 liver tumors, I have 1 left and it's been reduced by half the size! My tumor marker score came down to 3. She said that now that it's so low it will likely bounce up and down, but not to worry if it goes up a little. The number itself doesn't really mean much. It's simply used for trending.
I've gained about 10 pounds since my surgery which I am not too happy about, but the doctor is pleased. She said it's good to have the reserve in case I were to get sicker and begin to loose. The weight gain is in part due to the steroids they give me with the treatment and also likely because of being thrown into menopause. No estrogen= decreased metabolism:( For me on my small frame, 5 pounds is huge. 10 really makes me crazy! I just plan on trying to get as much exercise as possible and really start watching what I eat. How many people with pancreatic cancer have to watch their weight? Not many I assure you!! The good news is that cancer patients who keep weight on tend to do better than those who don't. This is what they tell me anyway.
Well this pretty much sums up what's been going on lately. I hope that this finds all of you doing well. Thanks for praying for us and doing anything else you do to help us. We appreciate and value your friendship more than we could ever tell you!
4/3/10
Hi Everyone and Happy Easter to you!! This is a very special time of the year. All of us get the chance to reflect on the past year and think about how we can live better in the next. Of course I'm speaking of the church year. No doubt I'm closer to God than ever before, but feel that there is always more I could be doing. I'm giving thought to what that might be and with our Priest's help, I will have yet one more reason to get up and out of bed each day.
Chemo has been tough these past several weeks, but I just had another scan so I'll be getting some feedback soon on how things are going. My doc has been doing a blood test every month called a "tumor marker test." If you read up on it, there are several different tests they do depending on what type of CA you have. There's one for breast, lung, ovarian, and the one they do on me, the CA19 for colon and pancreas. Anything over 37 is considered suspicious for tumor growth. My numbers have been coming down with the new chemo treatment we started in December. The last number was for the test they did March 11th which was 6.4. That was down from February's number which was 21. I am cautiously optimistic that my CT scan will show continued improvement since these numbers have been coming down so nicely.
God is truly "large and in charge" of my outcome and I'm hoping we can all convince him that I am still needed down here because my family really needs me and there are still so many things that I want to do to give back for all the blessings in my life.
I recently heard someone say that "Prayer is cheap, it costs nothing, however, it is truly priceless." How true I believe that statement is! I appreciate your prayers more than I can tell you. Please continue as they seem to be helping lately! I will let you all know about my scan results. I should find out at my next doc appt on April 8th.
Again, have a great Easter and enjoy the nice weather :)
PS: Happy Birthday Amanda who turns 23 today!!
2/6/10
Hello again! It brings me great pleasure to announce that Sharon Estok has some great news! I went to see my doctor on Thursday, February 4th after repeating the CT scans the 2nd. The Nurse Practitioner came in first with a gigantic smile on her face. She explained that my doc would soon be in to give details, but the news was good! The 4 tumors that I had in my liver... well 2 packed up and moved out! The other 2 got smaller. The pancreatic mass also got smaller. Not to the same degree as the liver tumors, but none the less, smaller! I had a positive lymph node that I wasn't aware of, but it too was considered to be slightly reduced in size/stable.
I had a pretty good feeling going in to see the doctor that day. I made my mind up before I went in that I trust God's plan for me and whatever news I got I would willingly accept. I think this comes with days upon days of praying, hoping, having faith and just LEARNING to trust God. I can't deny, however, that I was elated to hear such incredible news especially for my family! Also, for all of those who have been praying so hard for me.
Naturally since the treatment is working, we're going to stick with it. Eventually the cancer will figure out a way to "morph," outsmart the chemo and we'll be back to the old drawing board again. Until that time comes, I'll just bask in the glory of winning a battle. It's not the first, and won't be the last.
Just to give you an idea of what my chemo actually did to my cancer, the following information as stated in the radiology report compares the images from the Nov. 23rd report to the new one on Feb. 4th:
"Only 2 liver lesions remain"
Right lobe nodule measuring 11mm, now measures 5mm. (Wow! that's like half the size!)
Inferior lateral segment left lobe lesion measuring 19x15mm, now measures 13x12mm. (That was the one that grew so much on the Nov. scan)
"Several other liver lesions on the previous exam have cleared." "No new or enlarging liver lesion." (Hurrah!)
There is infiltrative left para-aortic retroperitoneal adenopathy, measuring 16 x16mm that was 17x17mm on the previous scan. (This is the lymph node that the doc explained was there before, but they referred to it differently on the Nov. scan and it was "news to me" on this scan.)
Ill-defined tumor centered on the junction of the pancreatic body and tail measuring 44x36mm, now measures 40x28mm. (Not too shabby!)
Radiology Impression:
Significant improvement in metastatic liver disease. Mild decrease in infiltrative mass at the junction of pancreatic body and pancreatic tail. nearby left para-aortic retroperitoneal adenopathy is stable to minimally improved.
My chest and pelvis were clear.
Good news indeed. Thank you God and thanks to all of you who have shared in praying for me! The doctor said that she would have been pleased with me getting no worse, staying the same. To have this improvement is truly a bonus and I'll gladly take it! I feel as though I have a leg up in the game now. Please continue your prayers as they have proven to be of great benefit! I will continue to update you with how things are going:)
1/26/10
Hello to all on this cold, wintery day in January. It's time to update again. I can't believe how fast the weeks are running by. It seems that I get a treatment, another week goes by, another treatment and before you know it...another month!
As I stated earlier, I planned to return to work part-time and that I did! So far it's been great. A little overwhelming at first, but it's getting easier. The first few times I came in, I was bombarded with co-workers coming up to me asking thinks like: "Are you really back," "How are you feeling," "What are you doing for treatment," and then the wonderful compliment... "You look great!" That's always nice to hear. Sometimes I wonder if everyone realizes what it takes these days to look great. It's certainly not without some effort on my part. Thank God for makeup! It's always been a good friend to me!! The fact that I haven't lost my hair on current treatment also helps a great deal. I know I would look much worse without eyebrows and eyelashes. I told my boss that she would have to wait a while to expect some real productivity out of me because I'm busy "working the room" so to speak right now. It will take a couple of weeks for me to get through the majority of the nursing/medical staff in the NICU and PICU before I can get some uninterrupted work accomplished! Fortunately, she understands what's going on and it's been easier in the last week or so.
Amanda and Andrew got a new Beagle puppy! Mike and I suggested against it, but like most children, they didn't listen. Andrew said that this is Amanda's Valentines Day and birthday gift combined. Oh yah... it's the gift that keeps on giving! So far she's giving lot's of love and incredible entertainment, but not without little puddles and stinky puppy poop! We have a training video that we got when we went as a family for "puppy training school" with Copper. Amandrew will be watching intently this coming weekend! I'm getting a taste of what being a grandmother is all about. The perks are that you get to enjoy the little one, but then they take it home so you have a break and have time to get refreshed for the next visit. The puppy stays at Andrew's apartment in "Little Italy," but does stay at my house with Amanda a couple or few times a week as well. I guess it's sort of like shared parenting. I get that awkward feeling when my neighbors see us outside with this puppy. I imagine them thinking..."Are those Estok people crazy?" "They need another dog like a sharp stick in the back!" I need to put a sign out that says: IT'S NOT MINE!
Treatment is going well. It helps to get the treatment every other week instead of every week. They also reduced the dose by 20% because the other dose was making me too sick. The side effects are less also, but still there. I get the treatment on Thursdays, but stay connected to my portable pump until Saturday. I don't really start to feel better until Monday and that's the day that I return to work for the week. I'm still kind of weak and tired on Monday so getting dinner really helps. I've been getting meals from neighbors and friends since this all started. We get meals on Monday and Thursday nights. I can't tell you how much this means to Mike, the girls and I. Steph spends the night every Monday because she has clinicals for nursing school at Southwest Hospital in Middleburg Hts. on Tues. mornings. So it's nice that on the night she comes home, there's always a hot meal , not to mention the fact that I'm coming home tired from a long 8hr day at work. Yes! 8 hours does poop me out. Doing a 12 hour shift now seems like some sort of torture device. I'm realizing that if I must return to work for health benefits, the days of working full-time are over. Although more expensive, I can still get benefits with part-time employment and considering that I will need chemo for the rest of my life, part-time seems the most reasonable. I'm hoping that my department can accommodate me. They have to have a part-time position available and that's not always possible. God willing, something will become available when my 16 weeks of "transitional duty" has expired.
Jaime is loving her job at Rainbow and Amanda is busy going to school and working for a law firm downtown. Stephanie is busy with nursing school and working at Akron U's campus store, "Zips." Nicolette is a busy teenager going to school and working at Strongsville's ice skating/hockey rink, "Ice Land." Mike and I are enjoying spending quality time at home when we're not working, especially when I'm feeling good.
I hope this gives you an idea of what's been happening in our corner of the world. I continue to be amazed by the generosity/support of our family/friends. It would me much harder for us to deal with my illness if it were not for the caring people who place themselves in our lives. Thanks to all of you who have been and continue to be.
I will be getting scanned again on Feb. 2nd and see the doc on Feb. 4th. I hope and pray that she has good news to tell us after these tests. First I pray that it hasn't spread anywhere else in my body. Second I pray that there has been healing. If that's the case then I will likely remain on the current chemo therapy and that's good because I now know what to expect from it. Please continue to keep our family in your prayers. I thank you for this many times over :)
1/2/2010
Happy New Year!! I hope everyone enjoyed the holidays and is ready to begin a fresh new year! I know that my family and I are ready to go and are hoping for good health above everything else!
The new treatment got the best of me around the 16th of December. I was slated to get another hit on the 17th, but after being soooo sick still from the Dec. 10th treatment, my doctor (God bless her), held off until the 31st of December. She said that giving me more when I was still having a hard time with the last could end up with me in the hospital. It was a nice break and enabeled me to get the shopping done and prepare for company.
This was a very special Christmas. My Rainbow family decided they would adopt my family this year. Every year our respiratory therapy department adopts a family at Christmas time that is having a hard time (mostly financial) and this year they decided to adopt mine. We received many gift cards that will be an enourmous help throughout this new year and even wrapped presents for the girls, Mike and myself. One of the RTs even had a Mary Kay fundraiser on our behalf and presented me with a very generous check along with Mary Kay products for the entire family. What can we say?! Thank you doesn't seem to be enough!! I know that God's love for me shines through these people. I hope they know how much it means to us, not just because of what they gave, but the reason behind it. We are truely blessed in so many ways!!
Another wonderful thing that happened over the holidays was the engagement of our daughter Amanda to her boyfriend, Andrew. Andrew is from Pittsburg, goes to Case with Amanda and is a 3rd yr law student. He will be graduating in May. He also has his Masters in education and used to teach highschool economics. We are really proud to welcome him to our family. He's everything I could want in a "son-in-law" and more...he's 6ft 3in tall!! Who would have thought that I could have a kid that tall!! He comes in very handy for reaching things for me that I usually have to drag a stool around to get!! He's much more than just that though. You can tell that he loves Amanda very much and she is crazy about him. I hope I get to see a grandchild from them because they both have light, curly hair and blue eyes! I certainly have a great deal to live for!!
I am planning to return to work Jan. 4th. with limited hours. I will be doing paperwork, helping the administrators, but also plan on getting back into the units when they get busy and could use my help. I will also be precepting some of the newly hired employees. I think it will be good for me to get out of the house, back into Rainbow where I'm surrounded by people who really care about me. Hopefully it will help me forget about my chronic illness and I can return to doing something that has always been important to me.
I almost forgot to mention that as of the 13th of Dec., I graduated from Youngstown State University with my BS. Mike and the girls were very proud of me and got lots of pictures and video. I will be putting up some new pictures so stay tuned for those!
I hope everyone had a wonderful holiday season and I look forward to our continued communication!! God bless you all and thanks for your continued prayers and support :)
12/14/09
Hi! Hope everyone is enjoying and not stressing the holiday season!
I got my mediport placed per plan and I gotta say that I HATE IT! Sorry to be such a poor sport, but my chest is pretty bony so it sticks out like a sore thumb and it just feels really weird when I touch it. The only good thing for me is that it saves my veins!
I got my first infusion with the 5FU on Dec. 3rd and again this past Thursday on Dec. 10th. They also gave me the Oxaliplatin for the first time on the 10th. The Oxaliplatin gives some pretty weird side effects. Primarily a sensitivity to cold. This includes food, drink and touching cold things. I even noticed a tingling sensation in my hands putting my coat on for the first time after the treatment. I have to wear gloves to touch anything cold. If I don't, it feels like a shock or like a pins and needle sensation. Eating or drinking something cold can also hurt. Fortunately, this only lasts for about 3-4 days. I have been nauseated with the treatments so I've had to take Zofran for that. Otherwise the treatments just leave me feeling pretty blah!
I've not been feeling as well as I was in October. I seem to have less energy and some increased back pain. I also haven't been exercising the way I know I should though. It can be hard to get motivated when you're not feeling good and then it just becomes a vicious cycle I guess. You don't exercise because you don't feel like it and thus you don't feel good because you're not exercising! I'm sure everyone can relate to that!
I listened to a sermon by Matt Chandler regarding suffering. It really did make me feel better. God said that we should build our house upon rock, not sand. A good foundation assures that our house will be able to sustain the hardest of storms. However, he never said that by doing this we would avoid the storms. They will come regardless. I also listened to my priest say at a recent Mass that God made many promises to us, but he never promised that our life would be easy. It's words such as these that comfort me now. No matter how bad it gets, I know that God is right there by my side and will never abandon me.
Thanks to all of you who also stay close to my side helping me and my family through the storm. God Bless :)
11/27/09
Hi Everyone. Sorry this update took so long getting here.
The last treatment I was slated to get was on November 10th. I never got that treatment because my WBC count was too low again. Times before I was able to get half of a treatment, but this one I had to skip all together. However, I did continue taking the oral chemo.
The next week I was off to Dallas for 5 days. Friends of ours were nice enough to donate plane tickets, so we went to see my cousin Sherry and her family. Our families were very close when we were little. Sherry was my maid-of-honor and I was hers. We've only been able to see each other 3 times in the past 26 years. Mike and I had a really nice time. They spoiled us rotten. Sherry took me to some stores that we don't have and I picked up a few things I thought were special for the girls. I'll have to wait until Christmas to give them to them. It's hard to wait!
I came back late Sunday night on the 22nd and had to get up early to go for tests at UH Monday morning. I got an EKG, CT scans of my chest, abdomen, and pelvis. I also had some lab work done.
On Tuesday, the 23rd, I came into see my doctor and discuss the results as planned. The doctor explained to me that out of the 4 lesions I have in my liver, 3 of them have grown. The most significant growth was one that initially measured 11mm and grew to 19mm. My pancreas remained stable...no worse...no better. The progression in my liver is equivelent to 22% according to my doctor, but no new lesions or metastasis to anywhere else. Nevertheless, she explained that this was reason enough to pull me off the clinical trial and move onto a 2nd line treatment.
I go for a mediport Monday morning, November 30th, because one of the drugs will get infused over a 24-hour period. This drug is called Fluorouracil (5FU). I will get hooked up to a pump that I will take home and wear around my waist in a fanny pack. The following day they want me to come back to get disconected. I'm going to ask if they will let me disconect it. The girls and I will meet with the genetics doctors on Tuesday, December 1st. Nothing on Wednesday; but Thursday (Dec 3rd) I start the new treatment with the 5FU. I will get this treatment every Thursday for 4 weeks. Two of those weeks they will also give me a chemo called Oxaliplatin which gets infused over 2 hrs along with Leucovorin, which is a drug that will increase the effects of the 5FU. Then...I get 2 weeks off!
There are some bizzare side effects, but I will save that for another update. I hope everyone had a Happy Thanksgiving. The next few weeks will be busy for us all. The latest news has reminded my family and I not to take anything for granted. We continue to appreciate your thoughts and prayers, and we still have hope :)
11/6/09
Well, here we are...November all ready! This year will soon be over, but I will never forget 2009.
Since today is Friday and day 3 after the treatment, I think it's safe to say how this treatment went. First of all, it was the first full treatment I've received in some time. That's because my white blood cell count (WBC) was too low. This time, my WBC was up from 550 to 1030. This shows that my bone marrow is working well on its own so I'm happy about that. So far, I seem to be tolerating this treatment better than the others--no unpleasant side effect that can't be remedied. I've been tired, but I can deal with that. I'll have another treatment next Tuesday, followed by 1 week off and that completes 3 cycles of treatment. On November 23rd, they will repeat CT scans and an EKG. As long as the cancer isn't worse, they will continue treatment with the study protocal. But if it continues to be working, they will stay with it. When it stops working, they will try something else and my hope is that they can keep me alive and well until a cure comes or some other amazing treatment unfolds.
I continue to be optomistic with few bad days scattered along the way. I had a really special day last week on Friday when I went to visit my co-workers with a pot luck lunch. We were celebrating the end of Respiratory care week and the food was awesome, but the surprise they had for me was even better. They gave me a beatiful handmade quilt. There are 59 squares where RTs, nurses, doctors and a few other special friends signed their names. I will post a picture of it in the very near future. It's beautiful! Cindy Duke, one of my best RT buddies, made it herself and she did a beautiful job! This is one of the many ways that people have made me feel better about my situation. How can you go around with your head down when everyone around you is reaching out with so much love and support?
Thanks again for your prayers and support and stay tuned for that picture of my quilt!
10/29/09
Wow! Sorry to take so long for this up-date, but the days go by so quickly and I have been super busy. My last chemo treatment was a little better than the one before it, but I still had some unpleasant side effects. The clinical study nurse said that they will "modify" my chemo so that I can have more than 3 good days out of the week. Glad to hear that!!
One of the 2 genetic tests they're doing on my blood sample is cooking. Hope to hear the results of that sometime in November.
No chemo infusion this week with the Gemzar so I am feeling pretty normal and enjoying doing things at home. My house has become a comfortable haven for great memories . Some mornings I just walk around the house looking at everything and counting up all the blessings that this life has given me. I have pictures of my kids in many rooms so it's beginning to feel like a "Grandma's" house, but that's ok I think. There are no pictures of them in the bathrooms or kitchen, so I think I'm good.
Jaime started her new job at Rainbow a few weeks ago and all seems to be going well for her. We finally have her all organized in the basement and she said that she loves it!
It's been a little over 2 months since I had the hysterectomy. I thought I escaped the "hot flashes" of menopause, but recently I've been feeling a little warm ! I decribed the feeling to a friend that's been there and she confirms that the hot flashes have likely arrived.
Next treatment and oncology appointment is set up for this coming Tuesday, Nov. 3rd. I don't know where the time is going. I can't believe the holidays will be here soon! Thanks again for visiting my page and thank you for your prayers and encouragement :)
10/15/09
This past Tuesday I saw a genetics doctor at University Hospital. She drew out my family tree, starting with me and my daughters extending out to my grandparents on both my mom and dad's family. I must say, it wasn't very pretty. Cancer is present on both my mom and dad's side. They also took some blood and will test it for a couple of gene mutations that could point to a genetic cause of my cancer. They told me that the blood test may show something, but also may show nothing. If it shows nothing, that doesn't mean there isn't something there. They just may not be able to identify it yet. They can keep a sample of my DNA for years to come so that as they learn more about genes, they can continue to test my DNA. This of course is all for the purpose of helping my girls. Whatever they find with me, they will test the girls for. If they have the same gene mutation, they will know they're at risk and will be able to take measures to prevent, or at least catch, the disease at its earliest stage.
This is basically what I've been doing since I was 27 years old with breast health. I was 24 years old when my mom died from breast CA and started with mammograms earlier than most because I was so paranoid and my GYN wanted to put my mind at ease. I wish now that I would have known more about the genetic susceptibility of pancreatic CA since my dad died from it. He smoked most of his life and was, lets say... more than a social drinker. He was also older when diagnosed. I just figured that this was probably why he had pancreatic CA and never gave it much thought. As women, I think we're so geared to be worried about breast health. I now know that because his mother died from uterine CA, this raises a red flag for the possibility of a gene mutation that puts us at risk for pancreatic, uterine, and colon CA. Who knew?!!
Anyway, I won't have results of the blood work for about 5 weeks; so for now, I will just continue with treatment and pray that it's working.
That brings me to today, 10/18/09. The day after my resurrection from the couch! I had my treatment on Tuesday and just yesterday was able to get up and do more than take a shower. I have no idea what happened with the last treatment, but it totally consumed me. I felt like I had the flu, which I'm sure I didn't because I didn't have a sore throat or the congestion that you would expect to go along with the flu. However, I did have aches and pains like never before and simply no energy to be vertical!
My neutrophil count was so low that they almost didn't give me a treatment. Instead they gave me 1/2 of a dose. I figured that meant 1/2 the side effects, but I think NOT! My next treatment is scheduled for Tuesday, 10/20. This is also Nicki's 17th birthday. I don't think we'll be celebrating on Tuesday unless by some chance they decide not to give me a treatment. Considering what happened with the last treatment, I'm not sure what to expect.
This is why it took me so long to finish this update. I just didn't feel up to doing anything, but today is a new day and the sun is shining. Like the saying goes, "Make hay while the sun shines." I will go to church with my family and then try and get some outdoor things done. We just donated a bunch of stuff that was taking up room in my garage and now need to get things in order and ready for winter. Thanks for visiting my page and please continue to pray for my family and I as we get ready for my next treatment this Tuesday :)
10/1/09
Second chemo infusion with the Gemzar in and over! This treatment affected me somewhat more than the first, but they tell me that's to be expected. I had the treatment on Tuesday and today is Thursday. So the past couple of days have been slow and I'm hoping that today I will start to bounce back. This time I felt more tired and just generally blah! I also got a little nauseated, but I have meds to help that. It's sort of similar to the way you would feel when you're coming down with something or like you've got the flu. I felt completely zapped of energy, weak and achy. But hey, I can't complain too much because if this is what I have to go through to beat up some bad cancer cells then I think it's worth it!
The chemo pill that I've been taking daily doesn't seem to have much, if any affect on me. That's a huge relief! I've been hesitating every day before I take it because I expect something wierd to happen and then when it doesn't, I'm just so thankful!
I lost my cell phone when I went in for the treatment on Tuesday so if any of you tried to reach me and didn't get a response, that's why. Thank goodness I had insurance on the phone so as of today, I have another phone. It'll take me a while to retrieve all of the numbers I had, but no big deal! These days there are many things that don't seem to be a big deal.
I want to thank every one of you who are praying for me and my family. Thanks also to those who have made a meal, sent a card, email or contacted me through this wiki. You have no idea how these kind acts heal me. Body and mind work together and the fact that all of you bring me so much joy through your genuine concern and kind actions make me happy. Maybe your prayers are actually part of the reason that I can have a positive attitude. What ever you're doing, I'm sure of one thing and that is... it's all good !
10/1/09
Second chemo infusion with the Gemzar in and over! This treatment affected me somewhat more than the first, but they tell me that's to be expected. I had the treatment on Tuesday and today is Thursday. So the past couple of days have been slow and I'm hoping that today I will start to bounce back. This time I felt more tired and just generally blah! I also got a little nauseated, but I have meds to help that. It's sort of similar to the way you would feel when you're coming down with something or like you've got the flu. I felt completely zapped of energy, weak and achy. But hey, I can't complain too much because if this is what I have to go through to beat up some bad cancer cells then I think it's worth it!
The chemo pill that I've been taking daily doesn't seem to have much, if any affect on me. That's a huge relief! I've been hesitating every day before I take it because I expect something wierd to happen and then when it doesn't, I'm just so thankful!
I lost my cell phone when I went in for the treatment on Tuesday so if any of you tried to reach me and didn't get a response, that's why. Thank goodness I had insurance on the phone so as of today, I have another phone. It'll take me a while to retrieve all of the numbers I had, but no big deal! These days there are many things that don't seem to be a big deal.
I want to thank every one of you who are praying for me and my family. Thanks also to those who have made a meal, sent a card, email or contacted me through this wiki. You have no idea how these kind acts heal me. Body and mind work together and the fact that all of you bring me so much joy through your genuine concern and kind actions make me happy. Maybe your prayers are actually part of the reason that I can have a positive attitude. What ever you're doing, I'm sure of one thing and that is... it's all good !
9/23/09
I finally know what it's like to get good news. On Monday, the 21st, the CT scan of my brain showed something reported to be possible metastisis. I had to get an MRI yesterday morning to rule it out. The good news is that it isn't cancer in my brain, but a small venous angioma. I'm not sure what that is, but I really don't care! If it had been mets to the brain, I wouldn't have been able to move forward with the clinical trail. As it turned out, I started the clinical trail yesterday afternoon, receiving my chemo as planned. It wasn't too bad. I got the pills to take home (chemo pills that I will take daily called Sutent), and the venous infusion of the popular pancreatic cancer drug known as Gemcitabine. The drug hurt a little going in, so they diluted it with saline and that helped. They said that I have really good veins. How wonderful! I'm going to need them.
I know that many people were praying for me when we heard the cancer may have moved to my brain. As it turned out, that isn't the case. Thanks to all who knew and prayed. I want to send out a special thank you to my cousin Sherry who prayed for a solid 2 hours that my brain was ok. I also went to see Dr. Nemeh Monday night and that also may have played into how things turned out. Mike and I will go to a healing service with Dr. Nemeh this coming Sunday, 9/27 in Parma. Prayer is the most powerful tool in my arsenal right now. No matter what the doctors can do, it's ultimately up to God. Keep the prayers coming and know that in that, you are helping us all tremendously!
9/16/09
Testing will begin tomorrow with blood work, echo and EKG. On Monday I will have CT scans and that should complete the tests I need to start the trial. Get ready, get set....
9/15/09
Today I met with my oncologist to sign consent for the clinical trial and to discuss side effects. We also talked about how I've been feeling since the last time I saw her. My exam was good. She said my liver felt normal. Comments like that make me feel very good. She said that this week we will get the tests done that I need to begin treatment. I will get CT scans of the brain, lungs, abdomen and pelvis along with an echo of my heart, EKG and bloodwork. Every 2 months they will repeat these tests to see if I am making progress. Progess includes not getting worse. If that would happen, we would adjust dosages or possibly withdraw from the study and try something else. Right now I am feeling very excited to get started and pray that the side effects are not anything I can't handle. Hopefully after completing the tests this week, I will begin treatment next week. That's about it for now. Thanks for keeping my family and I in your prayers!
9/1/09
Today I met with my new oncologist, who I like very much. She will be enrolling me in a clinical study slated to begin in 3 weeks. I will be doing two forms of chemo: infusion and pill form. This will continue as long as it proves to be effective. If I fail to respond to it, we will try other chemo options. How I do will totally depend on God and I, so keep us in your prayers :)
THE VERY FIRST POST:
To my family and friends:
This picture was taken this past June (2009) on our family vacation in Palm Coast Florida. I had a couple of tummy aches on this trip, but all-in-all, I was feeling pretty good as you might guess by the smile on my face. We had great fun with a great group of friends who are actually more like family. We also celebrated our 26th wedding anniversary that week on June 25th.
If your visiting this page, then you already know about the unbelievable turn of events that have brought all of us to our knees.
Long story short... I found out this past August that I have pancreatic cancer with mets to my ovaries and liver. I got rid of the ovaries via a total hysterectomy on August 13th. That's when the doctor discovered that the ovaries weren't the first to be hit. After a thorough exam of my insides, she found my pancreas looked very suspicious and the liver was also questionable. I learned on August 26th that our worst fears had been confirmed. The pathology report proved that the cancer started in my pancreas and spread to the ovaries and liver. The mass on my pancreas is inoperable, so that leaves us with chemotherapy slated to begin very soon.
I will be going to the Ireland Cancer Center at University Hospital, which of course is my second home. I have received many cards, emails, and calls with everyone letting me know that they are praying for my family and I. I appreciate this more than I can tell you. I am also receiving meals 2 times a week, organized by my neighbor, Susie.
Cancer is tragic, but as they say, "every dark cloud has a silver lining." This experience has shown us that we have the greatest friends and family anyone could dream of. We are overwhelmed with gratitude. Truly, one of my greatest accomplisments has to be raising 4 wonderful daughters. My girls mean everything to me and although I may not get to see everything they do, they've given me more right now to be proud of than I could ever hope for in a normal lifetime.
I would love to hear from you, so please drop me a line on this page. I will update as time goes by and, God willing, will have plenty of good news to share. Please continue to keep us in your prayers!
With love,
Sharon :)
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