I believe in miracles....miracles happen each and every day! I wake up, I enjoy feeding our pets, emptying the dishwasher and even washing dishes that didn't fit in it., doing the laundry...I enjoy seeing and talking with people, even emailing or messaging them on fb. This is my miracle that happens every day! Waking up and enjoying this day!
I also believe God has given me this journey. Although I did visualize as a long road with a few pot holes along the way....but now I feel it as a roller coaster! The ups and downs the sideways and even going around! And oh how I hate roller coasters!!!! It's even like playing poker....seems I never win!!!
on that note....Paul, Charlie and I went to see Dr. Kemeny at Sloan Kettering. We were to discuss the hepatic arterial pump and all that goes along with it. My appointment was for 2:30...but you all know how appointments go - more so for me - you play the waiting game.....Paul was lucky enough to have a casting call in Midtown at 4 pm....Charlie and I went into the office about 3:30 and waited some more. A nurse practitioner spoke with us and asked a million questions, then a young woman came in with the pump so we could see it and hold it....It is quite large! Then Dr. Kemeny came in....she began discussing this pump then said that when she read the scan results (not sure which one = CT or MRI) she noticed two (2) very tiny lesions which are brand new = in my lungs! One on each of them....okay, I'm human....I cried! Poor Paul was with us - because it was now about 5:30....She also highly suggested that along with this pump - chemo should be administered! I wasn't ready for that one...then she gave me the news on these new lesions....So...now I have to go to have this port put in....I had/have a choice of either as outpatient in Sloan or back to Newton by Dr. O'Brien who put it in originally....you all know me - I opt for Newton....so I have a date of either Monday, July 9 or Tuesday the 10th - they will get back to me. I need this before the 15th as I had all the pre-admission tests done in NY that are only good up to 30 days.... I have a call into Dr. May to find out if she spoke with Dr. Kemeny on what chemo's to use. Dr. K. suggested that I use the Panatubmab (the original one I had as a clinical study drug) and the 5 FU = the bag that I would carry for 2 days and another drug.... I'm so excited: NOT...I will get alligator skin, finger cuts, mouth sores, facial hair, darker eyebrows, longer eyelashes, a little hair loss, but no finger/feet tingling......I told Dr. K. the reason that I didn't want to ever do chemo again because of the last two cycles...she found out that it was the most aggressive approach and if it were to be used again, it would be a much lower dosage so my body could handle the side effects. I can still do the chemo in Sparta.
Right now = no hepatic arterial pump will be 'installed'....if I need chemo for these two new lesions than why bother with the pump as the chemo will also get the two lesions in my liver (which have increased in size from last month -- not alot -- but they still got bigger). I will post my scan results in another blog. They (Sloan) uses a little different language as Sparta...which is a bit harder to understand.
We left the city about 6 and decided to meet Nicholas at a restaurant in Dover (his choice) to celebrate his 28th birthday!!! Sam joined us (as she had to work until 4 pm), and Bre joined us as well. It was a great and happy time!!! Paul had to watch what he ate due to his 'new' food allergies and we all shared two little dessert cakes.
I was telling Paul that I feel really bad for him...he is my son - I am his mother...for him to have to hear all this 'bad' news each and every time...I know it is so stressful to him. Charlie was a bit upset that I felt worse for Paul and not him...I know the love for your very own child is a little different than the love for your spouse....It seems to be equal but I still think it's a little different. The worst part is that they say that they feel worse for me....
When we got home I received a note card from one of my 'old secretarial friends' that lives down in Florida (we've kept in touch). This note came at the perfect time!!! She enclosed a poem that a oncologist in Fl. wrote to his patients 10 years ago. It was printed again in their local newspaper by a cancer survivor gynecologist. I will post that poem separately.
I'm human, first I cry, then wonder where God is...then I get this note in the mail and this morning I read an email from my 'old time school mate' that was a prayer...timing couldn't have been better!!!!
I have one other thing that urks me....If I have to wait in the waiting room for over an hour to see and talk to a doctor...why on earth - can't they call you into their office and let you know what the test results are - good or bad news....put you in another room --- so you can cry or just let what they said - sink in! Rather than you waiting all that time to see you and then they say this to you - how do they expect you to be logical at that point??? My first response was -- I'm done! I don't want to do anything!!! Of course after 'letting go' a few minutes later....I was ready to fight!!! and do whatever is needed.
The doctor did say she sees this very hopeful...as my CEA is 10 and when I began going to Sloan last year for the first liver resection my number was up in the 200's...so she really thinks that I can do this with chemo and then have the pump 'installed'....
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