JackieandSal

Hello! Here is a quick update on what has been going on.  We have had lots of doctor appts. and finally my husband started Gleevec.  So far no side effects!!! :)  Hopefully it can stay that way.  He has to go for blood work next week and the week after that he goes for a follow up appt. with his oncologist and next month he is due for his ct scan.  Sometimes I still can’t believe he has cancer and there are days I am coping pretty well but then it hits me again or when I read the memoriam list of the liferaftgroup, again, I start feeling down.  This past weekend and all this week I have been feeling depressed and scared of losing him! I try to stay positive but it is difficult.  I know our life has changed ever since he was diagnosed with gist and I just feel my life will never be the same again.  Even though he is doing good right now, that fear and doubt in my mind of “will the cancer come back” is always there and drives me crazy.  But I do have to say that my life has also changed in a good way so I give god thanks for this.  We have gotten better about not arguing or fighting over petty stuff like we did before, life is too short to sweat the small stuff and we have gotten better about not holding grudges.  I have met some wonderful people who are also gisters or caregivers and it does make us feel better to speak to these people or just to know that we are not alone in this difficult situation.  I thank god for all this and for having 2 beautiful boys with my husband.  But I wish I can feel better when it comes to my pain I feel in my heart and anxieties of my daily life!  Thanks to all my friends and family who take the time to read my stories and thank you liferaftgroup for having that wonderful site!!

I know its been a while since I have wrote but there are times I just don’t feel like writing because I am trying not to think about whats going on but its just impossible.  Ok, my husbands ct scan came back all good! He got his Gleevec but has not started taking it because he decided he wanted to go for 1 more opinion at the Northwestern Memorial Hospital.  The doctor their decided to do a pet scan because of the cysts and lesions on his liver we got the results back which confirmed that it is only cysts and not gist (some good news :))! But she did mention that the spot where he had the tumor removed (small bowel) was lit up on the pet scan but she said this is normal after a surgery.  They also got pathology slides from where he had his surgery and sent them to their pathology dept and the results came out to be different.  She said the mitotic count was 29/50 which is pretty high.  She also tested him for Hepatitis because he still looks very pale but the results were negative.  He will start Gleevec this week.  I am starting to feel a bit better and trying to stay strong. 

This past Saturday (October 11) we went to the University of Chicago Hospital for my husbands blood work and CTscan and today (October 14) he has an appt. with his gist doctor.  I hope we get some good news.

Its been very hard trying to deal with this.  I am nervous for Tuesday to come and hear something we do not want to hear.  I am trying really hard to stay strong and think positive but at times I feel weak and have no strength.  I ask myself why us??

 Jackie

My name is Salvador, 44 years old, married (my wife’s name is Jackie) we have 2 boys (Giovanni 5 yrs old and Jonathan 2 yrs old) and we live in Chicago, IL.  Since my English is not that great my wife Jackie will be posting new messages and updating our blog.  My wife made a doctors appt. for me in August, 2008 because everyone kept making comments to her about how pale I was and that I looked as if I was losing weight.  I had my appt. with our family doctor on August 14, I explained all my symptoms I had (I had not told my wife all my symptoms so I wouldn’t worry her) which were bleeding when I had a bowel movement, black stools, heartburn, nausea, fatigue, and dizziness.  My doctor did some blood work and requested for me to have a CT scan of my stomach done.  She also poked my finger and told me I was anemic (that explained why I was so pale and yellowish).  On Saturday, August 16 I went for my CT scan and a couple days later I got a call from my doctor saying that the CT scan showed a 5 cm tumor in my small bowel and it also showed I had lesions and cysts in my liver.  It did not worry me to much because I thought it was just a normal cysts or a benign tumor but Jackie was very worried and couldn’t even sleep, she also told me they had found a bacteria in my blood called H Pylori which I felt it was not a big deal since it could easily be cured with antibiotics.  She then put me on a 14 day antibiotic (prevpac) and referred me to a surgeon.  We seen the surgeon and he explained to us that tumors in the small bowel were very uncommon and said it should be removed as quickly as possible, therefore, he scheduled the surgery for September 11.  I went in for my surgery and everything seemed to turn out good that day. Doctor told my wife everything came out good and that he did not do a biopsy of my liver because he felt it was not necessary since they looked like cysts and in 1 week our pathology results would be in.  I was in lots of pain of course but I was able to manage it.  I was hospitalized for 3 days and Friday, September 19 I had my first follow up appt. with the surgeon.  My wife and I went to my appt. and when the doc walked in with the paper work in his hand he had a look in his face that seemed to worry me and Jackie.  He told us that the tumor he removed was a GIST and that it was not 5cm but instead 10cm! We were a bit lost there because we had never heard of GIST so the first question we asked was if it was malignant.  He told us he could not tell us and he needed to refer us to a cancer doctor who would be able to give us more information on it.  The word “cancer” was a scary thought but we still had some hope that it wasn’t really cancer.  Jackie made the appt. and requested the first available and in the meantime she did lots of research on Gist and found out that yes it was a rare uncommon cancer which not a lot of treatments or options are available but she also read that some Gist can be benign and never re-occur.  On September 30th we went to see the oncologist and before he even started to examine me Jackie’s first question was if it was cancer and his response was “yes it is”.  So this time, confirmed that it was cancer, we pretty much couldn’t have gotten any worse news. As you can imagine, hearing all of this was devastating!! This was the worst situation to be in and Jackie started to cry he explained to us that this type of cancer can not be staged and it was hard for them to say if it would come back because most of the time it did come back!  All they can base it on was the size of the tumor and the mitotic count which I turned out to be intermediate to high risk! He also mentioned that he had not had a Gist patient in about 10 years, that is not what we wanted to hear so Jackie decided to do some research to find an oncologist experienced in GIST.  The doctor also said he was sure that the surgeon had removed all the cancer and he felt I didn’t need to be on a chemo therapy pill called Gleevec unless the tumors came back.  Jackie then found an experienced Gist Cancer doctor at University of Chicago and scheduled the appointment.  Our appt. was for October 7, 2008, we were nervous and anxious to go and hoping we can hear some good news.  We were there for 5 hours and found out that she has LOTS of experience with Gist patients she was just wonderful and gave us lots of information and answered all of Jackie’s questions.  We felt a bit better knowing that I was in good hands now.  She went through all my test results and seemed a bit concerned about the lesions and cysts I have on my liver and recommended for me to have another CT scan done and a possible biopsy just to be sure that the cancer had not already spread to my liver.  She said that on scans Gist on the liver normally look like cysts but can actually be the cancer that spread and just to be on the safe side she needed to run more test.  She also mentioned that she would like to put me on Gleevec for 1 year so just in case there is any cancer left the pill will stop it from growing and spreading BUT also mentioned that Gleevec not always works on every patient.  I am scheduled to go have my CT scan this Saturday, October 11 and she wants to see me back on Tuesday, October 14.  We are hoping and praying that gist has not spread to my liver.  We will keep you posted.    Thanks!