Don't answer that.
I get a call from the Chemo Hospital yesterday-
"Peggy, this is Nurse Linda, you missed your infusion appt. today and you never miss appointments."
Me: "I'm no longer on the every week chemo, so that appointment should have been deleted."
Today Becky, my oncologists Nurse calls me and tells me I missed the appt. I relayed to her that I AM positive Dr. Lo and I discussed that I was only getting an every other week chemo infusion. did she change her mind or mix me up with another patient?
So, I basically am back at the frickin' freakin' hospital every week for chemo. I was enjoying the idea of every other week, and to hanging onto my new-found energy.
I'll never know for sure if, once again, there was a communication breakdown and I "misunderstood" Dr. Lo or if I dreamt the whole conversation and made up my own schedule. It pisses me off. Because I am not clear with her, I ask and confirm her answers ALWAYS and I KNOW she said every other week, to which I replied, Yippee, or yea, or something to that effect.
Damn.
Wednesday, December 30, 2009
Wednesday, December 23, 2009
Sloan Kettering Date Set and an update on Communication Hell
Consultation with Dr. Fong at Sloan Kettering booked for January 11th.
Spoke with my surgeon, Dr. Shoup - Loyola, to let her know of my trip to see the Surgeon that trained HER. She'll call him and discuss my case and his findings as well.
I also got clarification from her regarding the "Am I a candidate for surgery to remove liver tumors or not". It was my understanding that, per the last Loyola team meeting, I was NOT a candidate. I came to that conclusion based on the fact that it wasn't presented to me as an option, only TheraShperes. Dr. Shoup explained that Theraspheres was presented as an optional treatment because it wouldn't "harm" the liver should surgery be done down the road.
Dr. Shoup also stated that I "could" have surgery but it is a matter of "should" I have surgery.
I'm not entirely clear on the reasons why I should not have surgery but here are some:
Spoke with my surgeon, Dr. Shoup - Loyola, to let her know of my trip to see the Surgeon that trained HER. She'll call him and discuss my case and his findings as well.
I also got clarification from her regarding the "Am I a candidate for surgery to remove liver tumors or not". It was my understanding that, per the last Loyola team meeting, I was NOT a candidate. I came to that conclusion based on the fact that it wasn't presented to me as an option, only TheraShperes. Dr. Shoup explained that Theraspheres was presented as an optional treatment because it wouldn't "harm" the liver should surgery be done down the road.
Dr. Shoup also stated that I "could" have surgery but it is a matter of "should" I have surgery.
I'm not entirely clear on the reasons why I should not have surgery but here are some:
- my tumors are on all lobes of liver, if all were cut out, not enough liver left to survive
- if only one side of liver operated on, that leaves other tumors, meaning not "cured"
- the liver surgery could end up compromising my ability to receive chemo and can also effect kidneys
I hope to get more understanding on the risks/benefits (although that is ALWAYS unclear) from my meeting with Dr Bertram at Northwestern today, and from Dr. Fong.
I saw Dr. Lo, my oncologist, yesterday at chemo and brought her up to date on my other consultations. I told her my continued frustrations with communication, and that as a patient, I may hear "the bad" news and not the good, or that if a limited amount of information is told to me, I will interpret and assume a host of other things. So I asked her to make sure she gives me more and clearer reasons for any team opinions and options presented to me so I can better process it and make decisions. I explained to her that I'm trying to get at much info and understanding as I can while my energy level and brain function are Good right now - while my chemo regimen is lighter, I may very well fall back into fatigue and Chemo Brain and don't want to be in a further position of weakness when making decisions on my care. I think she "got" it.
So my Angel Prayer Warriors, finish your shopping and gift wrapping and enjoy the time with your family and friends this week. As always, I thank you from the depths of my heart for all your support, prayers and good vibes.
((HUGS)) Peggy
Wednesday, December 16, 2009
I'm In - made It Behind the Iron Curtain of Appt. Screening at Sloan Kettering!
Something beautiful has been happening in the past 48 hours or so, let me try and explain:
You know when you have to deal with annoying but necessary bureaucratic procedures and phone calls? Like tech help for a computer problem and you go through 27 layers of "If X Press 1" until you finally reach a live body....It's really frustrating, highly time-consuming but you just know, that in order to get resolution, you need to get your mind all set that this is going to be a long phone call and very frustrating.
So, after my rookie attempt at getting the ball rolling at Sloan Kettering, Dr. Miller, my connection to Dr. Fong (liver surgeon at Sloan) heard my tale and emailed Dr. Fong. Dr. Miller gave him my case background and Dr. Fong replied that I should call his office to get an appt.
It was NOT the general Appt. Number, it was Dr. Fong's Office Number. Yippee! I'm behind the Iron Curtain and I have the email trail to prove it!
So, first thing Monday morning I call THE number at Sloan Kettering. I was leery, did Dr. Fong give me another general number and I'd still have to maneuver my way through the appointment labyrinth? I left a message and moved on to my next phone call - Northwestern Hospital, for an appt. with the surgeons to get their opinion on my case.
Now, back to my opening statement that "something beautiful has happened in the past 48 hours"...(I know, I know, it takes me a while to make a point):
They called back. The SAME day. Before Noon, in fact.
Terry from Dr. Fong's office said the magic words "You're approved and fax over every surgical, chemo, blood and pathology report since your diagnosis. Then we'll schedule the appt."
Linda from Dr. Beltram's office at Northwestern called to schedule surgery consultation for next week.
The cherry on the cake is that instead of having to go through the Loyola records department to get copies of all my records, my call to the Cancer Center found me connected to Nurse Jimenez, who printed everything for me and left it with the Security Guard for me to pick up last night. What an Angel! That saved me time folks, the Records Dept. is a black hole and I told Nurse Jimenez I just didn't have the leisure of time to wait on those records. She is getting some thank you treats delivered by me today!
So, the past 48 hours was a blessing of things coming together; things falling into place without so much angst and energy and worry that it won't all work out the way you want it to and NEED it to.
It may seem small, but phone calls answered in an unusually timely manner, a kind Nurse that did me a huge favor, the family friend that reached out to connect me to a highly reputable surgeon.....I so appreciate getting a 2-day feeling of peace and satisfaction amidst the constant highs and lows of cancer.
So, don't take it for granted if you have a run of things "falling into place"...there's usually someone else involved helping you along.
XOXOXO
Peggy
You know when you have to deal with annoying but necessary bureaucratic procedures and phone calls? Like tech help for a computer problem and you go through 27 layers of "If X Press 1" until you finally reach a live body....It's really frustrating, highly time-consuming but you just know, that in order to get resolution, you need to get your mind all set that this is going to be a long phone call and very frustrating.
So, after my rookie attempt at getting the ball rolling at Sloan Kettering, Dr. Miller, my connection to Dr. Fong (liver surgeon at Sloan) heard my tale and emailed Dr. Fong. Dr. Miller gave him my case background and Dr. Fong replied that I should call his office to get an appt.
It was NOT the general Appt. Number, it was Dr. Fong's Office Number. Yippee! I'm behind the Iron Curtain and I have the email trail to prove it!
So, first thing Monday morning I call THE number at Sloan Kettering. I was leery, did Dr. Fong give me another general number and I'd still have to maneuver my way through the appointment labyrinth? I left a message and moved on to my next phone call - Northwestern Hospital, for an appt. with the surgeons to get their opinion on my case.
Now, back to my opening statement that "something beautiful has happened in the past 48 hours"...(I know, I know, it takes me a while to make a point):
They called back. The SAME day. Before Noon, in fact.
Terry from Dr. Fong's office said the magic words "You're approved and fax over every surgical, chemo, blood and pathology report since your diagnosis. Then we'll schedule the appt."
Linda from Dr. Beltram's office at Northwestern called to schedule surgery consultation for next week.
The cherry on the cake is that instead of having to go through the Loyola records department to get copies of all my records, my call to the Cancer Center found me connected to Nurse Jimenez, who printed everything for me and left it with the Security Guard for me to pick up last night. What an Angel! That saved me time folks, the Records Dept. is a black hole and I told Nurse Jimenez I just didn't have the leisure of time to wait on those records. She is getting some thank you treats delivered by me today!
So, the past 48 hours was a blessing of things coming together; things falling into place without so much angst and energy and worry that it won't all work out the way you want it to and NEED it to.
It may seem small, but phone calls answered in an unusually timely manner, a kind Nurse that did me a huge favor, the family friend that reached out to connect me to a highly reputable surgeon.....I so appreciate getting a 2-day feeling of peace and satisfaction amidst the constant highs and lows of cancer.
So, don't take it for granted if you have a run of things "falling into place"...there's usually someone else involved helping you along.
XOXOXO
Peggy
Sunday, December 13, 2009
Dante's Inferno - 2nd Opinion Hell
I posted a few weeks back that my cancer team suggested a chemo break and that I am a candidate for Theraspheres. I met with radiologist and it was a frustrating session and I didn't feel he was able to "sell" me on the efficacy of the treatment, if it was a good next step etc. I was under the impression it is my only available targeted therapy to try at this point
I meet with Dr. Benson, oncologist at Northwestern - they say chemo should be continued, Theraspheres not recommended 1)not enough stats that it would "prolong life" and chemo has more evidence of that and 2) my tumors aren't vascular- that people tend to do better on targeted therapies if there tumors are vascular/lots of blood supply. It is also mentioned that, contrary to my current cancer team (onco, surgeon etc) that I AM looking like a candidate for liver surgery.
As exciting as that sounds - and Northwestern surgeon emphasizes that surgery is "the cure" to my disease, my current team has yo-yo'd on surgery and it's currently off the table. Add to that, Northwestern says that there is an optimum window of time to have surgery, when I'm on chemo break (I JUST re-started chemo this week) due to toxicity etc...
So now what do I do? I need to consult with surgeons at Northwestern for detailed opinion etc...do I go back to my original surgeon and share info? Now, does it come down to each surgeon's skill and ability, not just if I am a candidate? Until I know that Northwestern surgeons have thoroughly evaluated my PET Scan, I will not assume I am resectable right now. From my research, it appears that optimally, there are 4 or less tumors on the liver, though a very skilled surgeon may take on a case with more tumors.
I have a lot of tumors, don't know the number - though the Pet Scan in early November revealed that they weren't real "hot", several were "calcified" and not super active. That may be a factor in ability to do surgery, I'm guessing.
How do you decide? Dr. Miller, a dear friend of my family set the ball in motion for me to get an appt. with Dr. Yuman Fong- liver surgeon at Sloan Kettering, said to be the best....well, I was toltally screened out by my initial call however, Dr. Miller emailed Dr. Fong about my case and got a response that I should call directly for an appt- hopefully the number he gave is behind the Hospital's Great Wall of China/appt Screening Police.
How the heck are we to make decisions on our treatment when answers are so diverse????
there's sooo much more I could write about everything swirling around this next phase right now, but you'd be here for hours...will keep you posted.
XOXOXOX
Peggy
I meet with Dr. Benson, oncologist at Northwestern - they say chemo should be continued, Theraspheres not recommended 1)not enough stats that it would "prolong life" and chemo has more evidence of that and 2) my tumors aren't vascular- that people tend to do better on targeted therapies if there tumors are vascular/lots of blood supply. It is also mentioned that, contrary to my current cancer team (onco, surgeon etc) that I AM looking like a candidate for liver surgery.
As exciting as that sounds - and Northwestern surgeon emphasizes that surgery is "the cure" to my disease, my current team has yo-yo'd on surgery and it's currently off the table. Add to that, Northwestern says that there is an optimum window of time to have surgery, when I'm on chemo break (I JUST re-started chemo this week) due to toxicity etc...
So now what do I do? I need to consult with surgeons at Northwestern for detailed opinion etc...do I go back to my original surgeon and share info? Now, does it come down to each surgeon's skill and ability, not just if I am a candidate? Until I know that Northwestern surgeons have thoroughly evaluated my PET Scan, I will not assume I am resectable right now. From my research, it appears that optimally, there are 4 or less tumors on the liver, though a very skilled surgeon may take on a case with more tumors.
I have a lot of tumors, don't know the number - though the Pet Scan in early November revealed that they weren't real "hot", several were "calcified" and not super active. That may be a factor in ability to do surgery, I'm guessing.
How do you decide? Dr. Miller, a dear friend of my family set the ball in motion for me to get an appt. with Dr. Yuman Fong- liver surgeon at Sloan Kettering, said to be the best....well, I was toltally screened out by my initial call however, Dr. Miller emailed Dr. Fong about my case and got a response that I should call directly for an appt- hopefully the number he gave is behind the Hospital's Great Wall of China/appt Screening Police.
How the heck are we to make decisions on our treatment when answers are so diverse????
there's sooo much more I could write about everything swirling around this next phase right now, but you'd be here for hours...will keep you posted.
XOXOXOX
Peggy
Monday, December 7, 2009
Return to The Dark Side
Starting Chemo Again on Tuesday. For now, it will be "Chemo Light" - Erbatux and the 2-day take home pump of 5-FU.
Hopefully, side effects won't be as drastic for now, since I'm on a lighter poison regiment.
It's been soooo great having energy and appetite, although I have become a locust - my mouth was sooo deprived of culinary pleasure, now it just wants food ALL the time, even when I'm not hungry!
Will reschedule the TheraSpheres. I need to stay on some chemo so cancer doesn't return. Doing nothing will GUARANTEE the return of the Monster.
Have a Great Week!
XOXOXOX
Hopefully, side effects won't be as drastic for now, since I'm on a lighter poison regiment.
It's been soooo great having energy and appetite, although I have become a locust - my mouth was sooo deprived of culinary pleasure, now it just wants food ALL the time, even when I'm not hungry!
Will reschedule the TheraSpheres. I need to stay on some chemo so cancer doesn't return. Doing nothing will GUARANTEE the return of the Monster.
Have a Great Week!
XOXOXOX
Thursday, December 3, 2009
Anger, Confusion, Anger, Confusion
I am one pissed-off cancer chick. Meeting with Dr. Benson not good. Will report later when I can put some time and distance on it.
Wednesday, December 2, 2009
Today's The Day - 2nd opinion
I have an early evening appointment with Dr. Al Benson at Northwestern Memorial today. I'm anxious- will he recommend a totally different type of treatment than Loyola? Will he tell me there's nothing left to do? Will he point me towards "Hope"?
It's very hard to constantly create the "Hope" vibe.
After the appointment Lee & I are having dinner with Tim and Julie - always a great time with wonderful, dear friends.
I am feeling really really good. More energy than I've had in months & months. Chemo really does knock you for a loop. My hair is starting to grow again too!
I'll report back on the Dr Benson meeting!
XOXOX
Peggy
It's very hard to constantly create the "Hope" vibe.
After the appointment Lee & I are having dinner with Tim and Julie - always a great time with wonderful, dear friends.
I am feeling really really good. More energy than I've had in months & months. Chemo really does knock you for a loop. My hair is starting to grow again too!
I'll report back on the Dr Benson meeting!
XOXOX
Peggy
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