Thursday, September 27, 2012

Thursday, September 27th

I went to Sparta Cancer Center to have my port flushed (this should be done if the port is not accessed for chemo and should be done between 4 to 6 weeks)...it's flushed with a saline solution.

I spoke with Dr. May afterwards and told her my experience at Sloan and the lovely Dr. Kemeny.  She laughed and said she was sorry but she had a feeling she may not have any bed side manners!!!  Anyway, I told her what was suggested = chemo and the pump put in....Dr. May said the same thing as we did this last time...why do chemo AND the pump....do one or the other.  She also said there is a new drug and something I should think about.  I still have to 'look it up' but I think I remember seeing it on the Sloan site.  One of the side effects could be 'bleeding'...I think it's internal, gastro...something....but don't quote me here....I still have to look it up.   But she also said that because I get these symptoms that I find hard to bear that if we do chemo again we don't necessarily have to do it every other week - all the time.  We maybe able to skip a week here or there and then maybe even take a break.

I'm feeling a bit more positive about this.  When I first heard about the pump, I was excited and ready to do it...but finding two 'new' lesions in my lungs - I knew chemo only, was the way to go for me....now hearing about it - again - I'll find anything to be negative about it....winter is coming and to travel back and forth to the city - you never know...even with going to Sparta - but that is so much closer.

I think I'll just take off the month of October and most likely start in November.....

Oh, Dr. May also said I should 'report' her to the hospital....AND Dr. Halabe (spell??) said that she was NOT the woman that founded this pump.  A doctor in Indiana did...so she 'stole' his research....well, not really...she just jumped right on it!!!!  No wonder why she's so mean!  She has skeletons in her closet!

Thursday, September 20, 2012

very late Thursday, Sept. 20th or Friday morning the 21st

I spoke with a friend of a friend that has stage 4 colon cancer.  He found out a few months ago and I told him of my journey....He ended up going to Sloan and now has a pump!  He also sees Dr. Kemeny and he feels the same way seeing her disposition! but feels she can act that way because she was the one that did the main research for this pump.

He is very comfortable using this pump...he also had a colon resection at the same time he had the pump placed.  He is also going for chemo which gave/gives him the same symptom as I complained of = diarrhea.  Dr. Kemeny gave him a script for it and he used it for the first time...said he was okay - so far....but he also experienced it for six days!  He said the worst part is the waiting to get into the office for either the chemo or the pump chemo.  He and his wife drive into the city for each visit.

I will contact the surgeon (Dr. Allen) later today to talk to him about this.  I'm thinking of doing this.  It really does have great results and the chemo wouldn't be forever...not sure how long....but if the pump is only for 6 months...that maybe the same amount of time - 2 x a month for both = which equals to every week of doing something.....I think.....

I just hate the idea of having to actually 'see and talk' to Dr. Kemeny - again!!!!  The feeling of your fingernails scratching a chalkboard!!!! is the feeling I get just thinking about this!!!!

A new adventure!

Wednesday, September 19, 2012

Wednesday, Sept. 19th

I just got back from the doctor in Bangor, PA......Paul took me and Charlie is working so he knows nothing....

This doctor (seems really nice) looked over my blood work and scan results and feels that I should continue with the chemo! and have the hepatic pump placed.....something I really wasn't ready for! He said, as Dr. May has, that as long as the chemo is working I should continue.

According to that sweetheart doctor (Kemeny) she said that with the pump and chemo - I should go about six months - every two weeks to have the pump filled then emptied....I don't remember the exact schedule....I just hope that I can see another oncologist - hopefully Dr. May in Sparta can do the chemo....

Charlie made arrangements to go to S.C. for our niece's wedding the end of October....meaning I will wait for the surgery to have the pump put in....but I'm sure before the actual surgery I would most likely need another scan and then bloodwork for pre-admission testing......

I am NOT looking forward to this at all!!!! I feel so good now! The PA doctor said that I should do a 'coffee enema' during chemo and that should make the diarrhea discomfort a little easier....oh, sounds like so much fun!!!!


Monday, September 17, 2012

Monday, September 17th

I feel soooo good! Like my 'old' self! a reason for not blogging....not much to say.

I did have to go to the dentist today. Two weeks ago, my back molar - a piece broke off...the dentist was on vacation that week and I finally had an appointment for this morning. Thinking the worst...my tooth had to be pulled or capped....but for the first time - I was lucky -- gee, I should have stopped at the store to get a lottery ticket!!! All I needed was for the tooth to be built up....easy as pie! Of course he novocained me and keeping my small mouth open with a waggling tongue and lots of saliva is the hardest thing for me! As always, I survived! I do have to go back next week to have the molar on the other side filled - I have a cavity. Another good thing - this tooth has a cap on it and he said he can fill it with the cap on.....Maybe my luck has changed!!! The only thing about going to the dentist...is I have to take amoxicilin before any procedure...4 of them @ 500 mg each at one time! an hour before...due to having the port. People with heart mummers have to do that too.

I go to see this 'new' doctor on Wednesday. I thought it was the allergist but it's not. Father and son are both doctors and one works mainly as an allergist and the older one (Dad) is the medical family doctor that I will see. I'm ready to change my diet....I see Paul cooking all his veggies - if he can do it....I can too! I'm sure the first thing he'll tell me is 'no' chocolate or sugar.....once it's out of my system I'll be able to handle it.....heck, I'll probably loose a few unwanted pounds too! I will also ask him if he could 'flush' my port...if not, I will go to Sparta either the end of this week - or next week some time.

Still having fun putting together the family tree - right now I'm finishing up the Panzica/Pellerino side. I enjoy the memory portion! We actually have such a large family -- too bad we are spread out all over the place! Cousins that we don't even know as well as second cousins!!! I can not imagine us every getting together.....we'd need a convention hall!!!! Once this family tree is completed I will begin the Marra's family tree.

Nicholas just arrived on US ground - he was away in Belgium this past week. He stayed the weekend to do some sightseeing but he emailed me and said that Belgium was had all their streets closed and no cars were allowed on the roads...they do this one day a year -- and that was then!!! He wouldn't have made it back to the airport if they left...so he went sightseeing in that country....I'm sure he will fill us in one of these days!

Charlie and Paul are closing up the pool today. We should have done it a few weeks ago....we had a lot of leaves in the pool....funny - leaves are still green - except for the ones that are falling on the ground!

Again, as always, I thank everyone of you for your continued support and prayers!

Tuesday, September 11, 2012

Wednesday, Sept. 12th - 12:50 am...

Sorry I haven't blogged in a few days....I'm feeling like my old self! Really good!

I still have 'chemo' in me....my hair is still falling out - just a little - but then again, my hair is short...so even a little hair loss looks like alot.....and now that I'm typing this....I think that is the only thing or symptom that I have....which is a good thing!!! I have my energy level back too!

I've been busy, on my computer...I'm putting together family tree's....one for the Sinatra side - that is finally completed and now to work on the Panzica/Pellerino side....then the Marra side....It really is so much fun....learning about family that I haven't seen in a long time or even realizing family that now exists! --My computer programs are old...so when I add an attachment to my emails - not many can open it...so I end up 'copy and pasting'...which is a pain because I have to 'indent' lots of info - to make it understandable...and it really doesn't look as neat as a hard copy.....so I tried going on the Internet to set up a 'web' page to put the family tree on and all family members would be able to 'log on'....Well, after sitting here at the computer and putting in as much info as I pretty much had...I went to 'view' it.....and it was gone!!! I couldn't get back onto the 'site'.....all that time wasted! So, I went back to my old copy and paste....

I have an appointment with the allergist to consult with him next Wednesday....to see if he can help me in any way - changing diet...etc........then I will make a decision.

found out the other day that a high school friend - that we hooked up after years - computer age is great....passed away. I was in touch with her about the same time I found out that I had cancer...and we reminisced and wrote about our lives.....she was single, had open heart surgery in her 50's, traveled the US and abroad, engaged twice but never married...learned about her life in a few emails....then she emailed saying she had just found out she had lung cancer......she was very positive but had a lot of trouble with her chemo treatments....she suffered less than a year and is now at rest.... It amazes me how this terrible disease takes life in an instant. God Bless Cris, RIP.....she was a trooper! and a fighter to the end.

Not to end my blog in a sad note....boy, this weather has been a bit chilly! Great sleeping weather! I have had the windows open during the night...but last night and tonight...the windows are closed!!! Too chilly! Charlie's body is 'hot'....at night...so if I'm cold - I just roll over and touch him!!! warms me up right away! Much better than an electric blanket!......I'm going to bed now....good night.

Thursday, September 6, 2012

Thursday, Sept. 6th

I posted my story first then the scan...but as you are reading this...it will show up scan results first then my story....read on!

I hope you don't get the impression that I'm not being positive here. I just think I have had enough of running back and forth for all these appointments. Not that I'd be doing other stuff....but how much longer can I keep this up? I think I'm just frustrated right now...with the doctor and thinking of another surgery......

scan results from August 30th - and my thoughts...

CT scan of chest

I will just type in the Impression and Other results and a few other stuff:

radiation dose: (DLP): 429 mGy-cm

OTHER: Left-sided chest wall port with catheter tip in SVC. Noncontrast liver evaluation further limited by hepatic steatosis. A segment 7 ablation defect is again seen. Partially visualized left renal cyst. Small hiatal hernia.

IMPRESSION: since June 27, 2012
1. Nonspecific subcentimeter nodules in the right lower lobe and left upper lobe, first seen on the prior study and possibly metastases, are stable to minimally smaller. Continued follow-up recommended. Pulmonary findings otherwise stable with no new suspicious nodule seen.
2. Recommend correlation with same day abdominal MR imaging.

--------------------------------

CT PELVIS

radiation dose (DLP): 627 mGy-cm

IMPRESSION: Since April 1, 2011 no findings to suggest recurrence or metastatic disease in the pelvis.

---------------------------------

MR LIVER W/WO CON

TECHNIQUE: Axial in- and out-of-phase T1-weighted; axial fat-saturated T2-weighted; coronal single-shot fast spin-echo T2-weighted; dynamic and delayed hepatobiliary-phase gadolinium-enhanced 3D axial T1-weighted images were acquired using Gd-EOB-DTPA (Eovist).

IMPRESSION:
1. Since June 27, 2012, decreased tumor recurrence at hepatic resection margin. Stable segment 4a metastasis.
2. Decreased ablation defect in segment 7.

============================================
my thoughts:

I just wanted to add the 'stuff' the injected and the 'stuff' that I had to drink for these scans.....what is this doing to my body too?! I've had a total of 18 scans - MRI and CT's.........am I wrong for wanting to stop all of this????

I think of Robin Roberts...she did probably the same - chemo and scans for her breast cancer and was a survivor of 5 years (for a shorter period than I have)...then she gets this bone marrow cancer --- from all the scans, radiation and chemo????

So, when I think of all the complaining I am doing - not enjoying going through any of this - and having done this for 2 years: chemo, surgeries, and chemo again........with the possibilities (yes, I did say possibilities) of something else growning elsewhere or more lesions......what is the quality of life here..........
I will stay as positive as I can and I am really putting this in the hands of God. I will try this other doctor and see what other options I have -- to live a life that I can still do things when I want to.




Thursday, Sept. 6th

OMG!!! Is all I can say at this point!!! Dr. Kemeny is the WORST doctor with the WORST bedside manner ever!!! First of all we left here at 12:30 and 'ran' (literally) for the train in Secaucus...Paul didn't check the train schedule before we left...remembering that they come every few minutes - except for that time of day. If we didn't make the 1:37 train, we'd have to wait until 2:05....Charlie and I ran to the station from the parking garage, Paul parked in valet, he ran before us and got the tickets and we ran down to the platform and made it with 2 minutes to spare!!! Arrived at MSKCC at 2:15 - plenty of time before my scheduled appt. of 2:45....when I checked in I asked how long we'd be waiting....receptionist said about 1 1/2 hours...due to the holiday.........why on earth did I need an appt. on this day?! I could have waited......anyway, we waited and waited and waited = 3 hours!!! We didn't go into the office until 5 pm!!! and waited then too! Spoke with the nurse (who was mean on the phone), then to the nurse practitioner - she's a doll! the only nice one there!!! Then the 'sweetheart' doctor comes in - about 5:30. With all this --- they all knew that I didn't want to do the chemo anymore. I was really there to find out what the scans showed.

I couldn't review the written reports ahead of time - which annoys me.....Dr. Kemeny asked me why I didn't want to continue chemo....then I repeated (what I told the others) - all my symptoms. Of course they all had the same answer...there are medications out there that will help this, that and the other....I am not a medication taker and who wants to keep this 'crap' in me - let it out!!! Dr. Kemeny was okay then....she said....oh gee--here I am babbling and I forgot to say that the scans were good....the 4 lesions did shrink (that's what I said, not her) --- okay back to what Kemeny said......You did well with the chemo, I still don't understand why you'd want to stop....again, I told her why....then she said you could still have the pump put in but it would really be better if you also did the chemo.....I said, I'd never be able to get back and forth here to the city by doing chemo....she said - you don't have to take the 'full' dose, they can lower it. I said, Dr. May said she lowered it as much as she could and I still had these symptoms. She was getting upset by then.....I told her I had to think about what I would be doing next. Now shes getting huffy. She said that the surgeon could remove the one lesion and ablate the other - while putting the pump in. The two lesions in my lungs could be ablated at a later date. I asked again to repeat what she said, then to confirm it she checked with Dr. Allen (the surgeon). After he spoke with her - one more time I questioned what she said originally...then she said that I should make an appt. to see him and discuss what he will actually do. I said, could I do this via telephone......well, she lost it then!!! What a BIACH!!! OMG....this woman stood up and said 'did you see all the people in the waiting room to see me' ...duh, yea, and I was one of them for three hours! and she walked away in a huff saying I'm here to help you, if you don't want me to help you then don't waste my time! and walked out of the room!!! --what a bedside manner she has! I was so upset with her!!!! I'd NEVER go to her ever again!!!! I emailed her when I said I didn't want to do the 4th chemo and should I go for the scans and keep her appt....her nurse called and said 'yes' to all - with her attitude too! ---so I already told Kemeny that I didn't want to waste her time -- I just followed what that stupid nurse said --- all this --- to find out what the scans said. I just couldn't believe my eyes and ears. This woman has a problem and it's not me. We all walked out of there frustrated!

Went to dinner at Mustang Sally's....and we finally got home at 9 pm.

I really hate going into the city.....if we could go and come home at a reasonable time - I wouldn't mind but 9 hours....that's frustrating!!!

With all this said and done....I'm not sure if I want to have the pump put in. I am a positive person that wants to fight....but how much chemo can a body take?! Plus to have this pump put in that would deliver the chemo right to the liver - doesn't mean that the lesions could come back to any other part of my body = meaning I'd have to do the chemo to eliminate that.....meaning=why do both???? I am going to make an appt. with the allergist that Paul is seeing. Paul discussed my situation with him and this doctor has worked with other cancer patients.....so, that is my next option and I will wait until next week (I think, as Paul is working every day this week) to discuss this with him. I'll fight to the end...but don't anyone that hasn't had chemo tell me that there are other meds that will make you comfortable why the chemo knocks the crap out of you....knowing that I have to do this - forever!!!

I will now type up the scan reports in a separate blog.