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April 27, 2016 at 4:29 pm #22838
I can’t tell you what a great heart warming experience it was to meet both Frank and Matt and I should mention our other Courage Award winner Robyn. All truly deserving. Please send your good thoughts to Frank as he is having some health complications. And Mary Sue’s wonderful husband who won our Caregiver award, missed you Mary Sue. I hold all of you in a special place in my life!April 28, 2016 at 12:37 pm #68782msue5Participant I was there just never saw a good opportunity to talk to you. It was a great event and thank you for nominating my husband for the caregiver award. He is one of many great caregivers on this site. In my opinion that is a harder job than being the patient. We are allowed to break down but the caregiver must try to remain strong at all times. My heart goes out to all the caregivers.
Mary SueApril 28, 2016 at 1:13 pm #68783
Absolutely and he said he was totally surprized, good job Mary Sue. I will be emailing you today, please write me back!!
Caregivers are prone to low immune systems I read so we must take care of ourselves!April 28, 2016 at 3:14 pm #68784buffcodyParticipant
It was just great to finally meet Catherine after all her assistance to me over the past 4 years of my Stage IV journey. Even better in person good as she is online. And Matt and I began a relationship that I plan to continue off Forum. He is an amazing man, some of which probably does not come through in a context so often dealing with physical woes, but he there are also triumphs of which Matt has had many. He sure looked good and feels good for the most part as well. The health problems I have been having recently and erupted on my trip from Michigan to Safe in the Sun in dramatic form fortunately let up long enough to spend an hour or so at the event. They do not seem to have anything to do with the cancer, but may have something to do with the radiation treatment I received a year ago. At any rate, I am seeing a gastro specialist next week and should know more then.
FrankMay 1, 2016 at 11:55 am #68785
Just checking in with you. How are you doing?May 5, 2016 at 6:08 pm #68786goldfidlerParticipant
Catherine and Frank,
It was truly a pleasure to meet both of you in person. What a wonderful event to see and experience in person. The teams were inspiring in their drive to raise awareness and funds for the future treatment of this disease while having fun and remembering their family and friends.
After a couple of days up north, I am now back in FL. After receiving my Nivo maintenance infusion on Monday, I have been very tired all week. Of all of the side effects, fatigue is the most tolerable to me. Better than the alternatives. The only other notable issue has been continued discoloration of certain areas of my skin. What I initially thought was vitiligo actually now appears to be hyperpigmentation. It appears that I am getting patches of dark spots rather than patches of light spots. I will include more info in my next update.
Thank you to everyone who I met at the event. A truly enjoyable experience.
MattMay 5, 2016 at 8:03 pm #68787Dick_KParticipant
It is so nice to be able to meet and talk in person with our “on-line contacts”. I had to miss in 2015 but very happy 2016 was different; had a great time.May 5, 2016 at 11:03 pm #68788buffcodyParticipant Catherine knew I was not feeling well the day of the SFS. In fact, I had just been in urgent care there because of some not-pretty-to-describe stomach ills. They didn’t pass quickly, and when my wife and I got back home, I had a phone message from the urgent care folks that I had Hepatitis A. What an awful surprise/shock, particularly because I had been vaccinated just 4 years before for a trip to China and had not been visiting the 3rd world since my Stage IV diagnosis in 2012. It took a week for me to find out, but it was finally determined that I did NOT have Hepatitis A. So, what did I have? Nothing sure yet, but I do have a problem with the drainage of the bile ducts from my liver, so I will have an operation Monday where the surgeon will be both attaching plastic stents and doing a biopsy. Why a biopsy? Because my last melanoma appearance had been definitively determined in 2015, and I had undergone radiation for it between the duodenum and pancreas where it was located. My oncologist says that it is possible it is some sort of spread of the melanoma. The specifics of some problem in the liver area did appear to some extent on my very recent CT of the abdomen. But actual spread is not yet determined, and it could be some effect of the radiation last year now showing up, for instance. So I’m living it day by day and know I have not been treated with pembrolizumab yet, which is the most likely next stop if it is a spread of the melanoma. My swimming competition plans for state and national championships the weekend before and after the SFS, naturally, went down the drain. But I’m still afloat here in Kalamazoo and plan for a good surgery on Monday and back home, I hope, the next day.May 6, 2016 at 11:51 am #68789 Oh Frank, those urgent care places are so bad at times! I am so sorry to hear about the swimming competition plans cancellation and about your upcoming surgery. Good thing to have keytruda in the wings. We will be thinking of you and sending you our prayers for a quick recovery.
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