Tuesday, December 16, 2008

Back on Track

Ok, cutting to it:

The PET-CT scan on 12/10 was finally compared to the original one from July and everyone is happy. While I did not speak to the doctor myself, and I am very careful with my mother's description of phone conversations, I believe she's in good shape. She said the doctor's nurse called and said the comparison showed good progress, and that Dr. Tiersten was very happy with the report.

I will call myself tomorrow to get as many details as I can but every time there has been "concerned" news they have called me and not my mother because they know I am the "go to person." Today they called her and I have to believe it was because it was only a good report.

More when I get details....

Sunday, December 14, 2008

Busy 2 months--waiting game

Never, ever assume things are moving along positively all the time. November's trip to the oncologist proved there are bumps in the road. Every month they take blood and check protein markers. Up until November the markers had been steadily decreasing. November: stabilization.

While stabilization is not a bad thing, it is not what the doctors want yet. So the PET-CT scan that was scheduled for January was moved up to December just to be "conservative." Needless to say, no matter how many times they tell me not to worry....I mean, come off it!

So on Friday, 12/12 we drove up to NY, mom had the PET-CT done and we came home. Monday we go back for the December appointment and a review of the scan. If they dare tell me they don't have the results I'll scream. The scan was done on the 2nd floor of the SAME building the oncologist is in. According to my cousin, a radiologist on the other side of the city, but who did all her medical schooling at NYU, they could have read the scan right there on the spot after it was done. So go on, I dare you tell me you don't have the results.

More Monday night---just hoping and praying we didn't take any steps backwards.

Tuesday, October 14, 2008

Today was a GREAT day!

Without going into the insane details of how one has to FIGHT with doctors, nurses, health care systems, etc., when faced with the health of a loved one, I'll sum the day up in a simple statement followed by a simple summary. I'm too relieved to bash the stupid people in the world right now (Diagnostic Imaging Associates in Delaware)--now you know whom I am referring to.

Doctor's appointment today: NYU Urology Associates with Dr. Stifelman
Purpose: followup appointment to July after a followup abdominal/pelvic CT w/contrast
Outcome: NOT KIDNEY CANCER!!!!!!

The PET-CT scan my mother took in July showed a mass on her right kidney. Given the breast cancer and the liver lesions which turned out to be metastases of the breast cancer led everyone to rightfully assume that the kidney mass was also a metastasis of the breast cancer. Since you cannot biopsy a kidney due to fear of spreading any cancer/disease it may contain, you take the negative position and assume the worse.

Last Monday's CT scan w/contrast did NOT light the kidney mass up like a Christmas tree as it did the other lesions--it showed nothing but a dense mass, indicating a benign cyst!!!!!!!

And that is that when it comes to the kidney worries--mom will have a 6-month CT scan w/contrast to confirm that it is indeed just a cyst and nothing more. One HUGE bullet dodged!

...someday I'll relay the story of DIA and their incompetence, but not tonight, too worn out!

Friday, September 19, 2008

September Doc Appointment Update

We've been in a bit of a holding pattern for the last month+ and will continue that way for another 3 weeks or so. This is a good thing!

About two weeks prior to this mom called to tell me the usual morning shower story but with a twist: she usually called to tell me the scab on her right nipple had fallen off in the shower and that once again she had some bleeding for a while. NOT THIS TIME! This time she called to say that it DIDN'T bleed! We were told that eventually this would happen but I never imagined it would happen after only 4 weeks on Arimidex. I said, "Well, until I am told otherwise I will take this as a terrific/positive sign. Scabs fall off when wounds heal."

On Monday, 9/15, I took mom to her first followup oncologist appointment at NYUCI with Dr. Tiersten. Mom was asked how she was feeling ("I feel fine!); what kind of side effects she was having from the Arimidex ("None!); etc. I explained about the scab and both the nurse and doctor concurred that all of this was great news. After a physical exam Dr. Tiersten said she thought mom was making great forward progress and that everything looked terrific. (Knock and everything and anything made of wood!)

We left to set up the October appointment and stop at Plembotomy for another blood test when Dr. Tiersten came up to me and said yet again, that she was very happy with how things looked. Being as superstitous as I am I said, "Thank you so much...now stop saying that!" She laughed and said, "Yes, yes!"

So now I have the delightful task of finding a day to take mom in for a CT scan (locally done) so that on October 14th her urologist can give us an update on the state of her kidney and then the next day Dr. Tiersten can let us know how things compare in the liver.

...and I have to remember to book a hotel room NOW or we'll be in trouble....

So, the last 6 weeks--a very good period of time.

Friday, August 1, 2008

Finally, Some Good News!

Wednesday, July 30 brought a very large sigh of relief with our first visit to Mom's oncologist, Dr. Amy Tiersten at the NYUCI.

In a nutshell mom has a non-aggressive form of breast cancer that is also hormone receptor positive. This means:
  • anti-hormonal meds (Arimidex) taken once a day in pill form
  • no chemo
  • no radiation
  • no surgery (as long as the treatment does what it is supposed to do)
Anyone else just fall on the floor?

In addition, Mom's liver functions tested completely normal--it is working as if "yeah, so there's cancer in here but who cares I've got work to do."

Still lying on the floor, aren't ya?

We will go to NYUCI to meet with Dr. Tiersten once a month and monitor the effect of the meds. Remission is expected as the outcome. If that indeed does occur we will tackle the kidney situation as kidneys don't respond to any type cancer treatments. But we will cross that bridge when we come to it.

So.....as I said to Mom the other day, it is time to get back to living. We can sit and brood that she has cancer or we can move forward and approach things in a positive manner, all while taking everything as it comes but not waiting around for anything bad to happen.

That means I figure out how I'm going to get through playing a former student's wedding tomorrow afternoon (I've had such a lot of time to practice...), perhaps I head up to UMASS for part of the last DMA of the summer, and then (gulp) get ready for band camp which will be here in a matter of 20 days!

Thank you to everyone who kept Mom in their thoughts and prayers--can't get through stuff like this without the selflessness of others!

Thursday, July 24, 2008

Cousin Got Tired of Waiting....Biopsies = Good

Having a cousin whose husband is a senior faculty/surgeon at NYU can have its advantages. We all got tired of waiting to hear the biopsy results, and the thought of having to wait ANOTHER week to find out what the outcome was when we met with the oncologist seemed daunting at the very least. So cousin Joseph went to work.

Short story: liver biopsy showed lesions are metastases of the breast cancer. THIS is what we were hoping for! (Ok, the miracle would have been for them to be benign but that would have been a stretch so this is a close enough mini-miracle.)

(Mom is quite possibly still crying with relief because the odds of the mastectomy actually needing to occur are very small now. We will try treatment first in the hopes of shrinking the tumors and slowing growth and spread. If that happens most likely, no mastectomy at all.)

July 30th we'll know what the plan of treatment is to be when we meet with the oncologist at NYU.

Until then we should all now have an easier weekend and front end of the week.

Thursday, July 17, 2008

Now We Wait...

Got home about an hour ago--yesterday was long, brutal and exhausting for everyone. Here's the breakdown:

  • 5:00 AM- depart Delaware for New York
  • 7:30 AM - arrive at NYU Medical Center; cousin Patty meets us there with wheelchair
  • 9:00 AM - Mom taken into Radiology for liver biopsy
  • 10:00 AM - biopsy finished and Mom is taken upstairs to be monitored for swelling, pain, bleeding, etc.
  • 1:15 PM - depart NYUMC and go to NYU Cancer Institute for 2nd breast biopsy
  • 3:00 PM - Pathology, me and Patty VERY confused as instead of a core biopsy another fine need aspiration was ordered....something is wrong. Pathology doctor calls breast oncologist
  • 3:30 PM - Mom heads down from Pathology to breast surgeon's office (same building thankfully) for a core biopsy. (stupid, dumbshit secretary screwed up the appointment!)
  • 4:00 PM - depart NYUCI for NYU Urology Associates 2 blocks away--we walk/push.
  • 5:00 PM - meet with Mom's now assigned urologist for an exam. He then called the breast surgeon/oncologist and discussed his thoughts of action for the kidney situation, etc. We then had a discussion on the following:
  • Right kidney contains a huge mass;
  • **IF** liver tissue matches breast tissue (the cancer that is) then Mom will most likely undergo anti-hormonal meds and some chemotherapy for approximately 3 months.
  • At the end of that treatment period new images will be taken and if she has done well and the tumors have responded to the treatment (meaning shrunk), then we will deal with the kidney situation....meaning surgery to, and I quote "Get that thing out of there because **THAT** is what can kill you."
  • Nice, huh? Actually, as harsh as the above reads, the urologist was anything BUT harsh. He was open, honest and incredibly thorough. And he was NICE! He didn't leave the room to speak with Mom's breast surgeon--he made the call right in front of us. He said if the tests come back as we are all hoping it is a very positive thing, and the outcome will also be positive. He is worried that the kidney tumor, which is most likely NOT related to the breast or liver cancers, will spread eventually and that is very, very bad. BUT it is not something he feels needs to be dealt with immediately. The other two issues must get under control because kidney surgery, while only around a 2 hour procedure, is very serious and mom needs the strength for post-op recovery.

    If all this goes according to the plan above, kidney surgery would be done sometime in the mid to late fall.

    At any rate, all the tests are done and now we just sit and wait to for the phone to ring with the results.

    That's it, I'm beat and want to take a nap.

    Sunday, July 13, 2008

    Wednesday -- Gonna Be A Long Day

    The schedule for this week is set and everything is happening in one day....I just hope it's not too much.

    Wednesday, July 16---
    • 9:00 AM: CT guided liver biopsy at NYU Medical Center
    • 2:30 PM: another biopsy of the breast tumor, most likely a core biopsy @ NYU Cancer Institute
    • 4:00 PM: meet with a urologist at his office 2 blocks away from NYUCI
    I have a hotel booked for Wednesday night so we don't have to drive all the way home afterwards. The liver biopsy has me the most nervous with regard to how Mom will be. It's the most invasive of everything and while the procedure is about 20-30 minutes, she has to lie still for 1-2 hours afterwards so they can monitor her pain and the healing process of the liver itself--essentially, make sure the liver doesn't bleed.

    What I hate most about everything is actually all the waiting--talk about the proverbial "hurry up and wait" scenario. Wednesday is only 3.5 days from now and it feels like it is years away. I am the world's biggest control freak (all of you reading this know this as pure fact) and I do better with knowing details and moving forward along paths of action. I simply hate NOT KNOWING what we're dealing with.

    So I'm preparing for the worse and hoping/praying for the best......shit.

    Thursday, July 10, 2008

    One Bit of Good News

    Mom's cardiologist wanted to see her before signing off on medical clearance for surgery...whenever that is going to be. We spent the better part of the afternoon there--not becaue of anything bad but because there is ALWAYS at least a one hour wait to be seen from whatever your actual appointment time is. Why? He's one of the best cardiologists in the area so that's probably why.

    Long story short: he has no concerns at all about her undergoing any surgeries--he considers her to be a low risk patient. THANK GOD! Her last stress test (November) and her last echocardiogram (May) are both good.

    As we left he said, "See you in six months." I just looked at him and he said, "Yup, six months. December. Just make sure you schedule it before we're both in Tennessee for the football championship game." (He's a HUGE UD Football fan.) And while he was saying this he just nodded knowing the concern but mouthed "it will work out."

    From his mouth to God's ears....and I'm not talking about the stupid football game.

    Wednesday, July 9, 2008

    Surgery On Hold--Things Just Got Complicated

    Mom's surgeon called at 4:50 PM today to tell me that the results of the PET/CT scan came back showing a mass on a kidney and another mass on the liver.

    Surgeon is setting up a biopsy for the liver mass and a core biopsy of the breast cancer. The hope is that the mass in the liver is related to the breast cancer. If so Mom will go on med treatments to shrink the liver mass--these meds will also slow down the growth of the breast cancer. If the mass on the liver is not related to the breast cancer, meaning if it is a different primary cancer....well, in the words of the surgeon, "That's a whole other ballgame."

    That's all I know right now.

    None of this is making any sense to me...none of it. It's one thing when a truck runs you over. It's something else when that same truck backs up and hits you a second time....then races forward and hits you a third time....and on and on and on.

    Tuesday, July 8, 2008

    Pre-Admission Test Day...and Secaucus, New Jersey

    The last 24 hours were (fortunately) quite uneventful yet due to the entertainment value, worth writing about.

    Even though the traveling can be a bit much at times, Mom and I both thought it best that all her pre-admission tests were done in NY as opposed to here in Delaware. With the timetable being so tight and her needing both her primary care doctor and her cardiologist to give medical clearance for the surgery, the thought of having the tests done in DE and then be delayed for who knows what reason in their getting to NYU was not something we wanted to chance. So yesterday afternoon we headed north.

    The scheduling person at NYU Cancer Institute for Dr. Hiotis is, frankly, a pit bull. How she got everything scheduled for one day is beyond me, but it was clear today that when Christine calls the folks at NYU they make it work even when they don't want to. ....and part of today had to be handled elsewhere because NYU simply could not (or would not) budge.

    So yesterday at 4 PM we headed to north Jersey to stay overnight in a hotel because Mom's PET/CT scan was scheduled for 7:30 AM at Park Avenue Radiologists. After checking out a bunch of different hotels and prices it was clear that I wasn't getting away with anything under $200 for the night. So at the point, screw it all: stay at the Embassy Suites and be comfortable! ...of course, finding the Embassy Suites in Secaucus, New Jersey was another thing. Fortunately my little gps got us there with a minimum of yelling between driver and passenger.

    Mom was thrilled with the room! She had her own room with a 32" flat screen TV, a king bed, and a beautiful handicapped bathroom. And me? I had the entire living room to myself....with my own 32" tv, the microwave, the mini-fridge, the COFFEE MAKER, and a sofa bed...but frankly who cared about the sofa. I had some space, we wouldn't trip over each other, and Mom wouldn't worry about waking me if she needed to use the bathroom in the middle of the night.

    Fast forward to bedtime....here comes the entertainment I promised. Mom was all set to get into bed, wheeled herself over to the side she usually gets in on, stands up and.....the mattress hits about 4 inches ABOVE her ass! It was a pillow top and little miss "I'm 5 feet tall" (she's 4' 11" if she's anything!) can't hoist her butt high enough to get into the bed. So she gets back into the wheelchair, rolls into the living room, exclaims "I'll sleep here on the sofa and you take the bed. It's perfectly fine." And before I know what's happening she's out of her chair and starting to sit down on the sofa bed.....which is 4 inches BELOW her ass! The world now moves in slow motion. There I am reaching out and lunging forward yelling, "Www--aa--ii--tt Ffff--ooo----rrrr meeeeee toooooo heeeeeeeellllpppppp!" And there she is making contact with the mattress and rolling onto her back, legs and feet flying up in to the air heading back OVER her head, nightgown flipping up and COVERING her head....and yes, the curtains in that part of the room were still WIDE OPEN!!

    The next 10 minutes were taken up with me trying to get her upright, over to the edge of the mattress and back up and into her chair......this took place with us laughing hysterically, and yes, the curtains still wide open for all the world in the Courtyard Marriott across the way to watch.

    Finally she's up and into her chair and I told her we were going back to the bedroom and getting her in the real bed. So now, picture me ON the bed behind her so that my knees are pushing down the edge of the mattress pillow top so that it can get UNDER her butt all while she is trying to shimmy backwards onto the bed. ....and no, those curtains were NOT open.

    Finally she gets settled, I have worked up a good sweat and am now WIDE AWAKE. But she was in the bed and that was that. (Oh, and just let me tell you that it was a damn good thing I got her into that bed too. The bar running through the center of the sofa bed....let's just say I'll be sleeping nice and soundly tonight here at home because there was ZERO sleep for me last night.)

    Out of the hotel @ 6:15 AM and outside Park Avenue Radiologists at exactly 7 AM. The PET/CT scan went along right on schedule; everyone was incredibly nice and helpful; and we were out the door and back in the car @ 9:40 AM heading over to NYU......and we were starved!

    After a (gulp) magnificent....NOT...breakfast in the cafeteria at Tisch Hospital in the NYU Medical Center, we headed over to Pre-Admissions and, shocker of the day, were in and out in exactly 55 minutes! We were told it would take 3 hours....nope. 55 minutes. We headed to the car and were cruising cross town to the Lincoln Tunnel by 1:30. This meant ZERO cross town traffic, ZERO tunnel traffic and ZERO NJ Turnpike traffic. Mom was home cuddling and cooing her evil, um, er, sweet little kitty cat (thing was born of a demon seed I tell you!) by 4 PM and I was getting yelled at by the pups by 4:30 PM.

    ....and now we just have to go to see her cardiologist on Thursday and hopefully all will be set and in motion for next week's surgery....that is, if her primary care doctor remembers to fax her surgeon the medical clearance form. ...guess I'll be on the phone a lot tomorrow.

    Sunday, July 6, 2008

    Rough Day for Me

    I took my run earlier today, around high noon. It wasn't an overly hot day and I just felt the need to get out. The run was great--quite relaxing. But sometime during the middle of the afternoon I hit a wall....perhaps even a little panic attack set in. I became anxious and overwhelmed. Then my aunt called and that was the end of everything--I got off the phone and simply wanted to scream.

    My patience is shot, so are my nerves. I suppose that I'm trying so hard to "keep it together" that eventually one just can't any longer and there has to be some sort of release. My aunt didn't say anything to upset me but after 10 minutes of explaining why I can't leave earlier tomorrow for the hotel, that yes, the dogs are going to be looked after but that's part of the reason why I can't leave earlier---the last thing Emily (house/pet sitter) needs to do is clean up a mess. No I don't want to bring Mom over for dinner and THEN head to the hotel--it will be too much not only for her, but for me as well, etc. It was just annoying and tiresome. Thank you for offering to help; please don't keep calling and asking me if I need anything--right now I do not need anything. But I bet in two weeks when I'm home alone caring for Mom there will be reason after reason as to why no one can come to Delaware to help me "at that time." I hope I'm wrong but I'm willing to bet I'm not.

    I can't concentrate on much of anything right now. I'm picking at Brian's show...got another 2 pages written a few moments ago. And then I sat there incredibly annoyed that I had to create yet ANOTHER equipment change for the guard. Why the fuck do they need 3 flag changes in the first 90 seconds of the show?! Dear Lord, save me from the "more is better" colorguard instructor in Arizona! Brian, if you're reading this: if there is a way for the guard to pick up a new flag NEAR the baritone soloist on side 2, great. If not, I ask again: do they REALLY need ANOTHER flag change???

    I love my dogs, but this is the time of night they are a little "busy." And I don't have the patience. So I'm sitting on the deck with the computer surrounded by citronella candles and a delightfully strong Tangueray and tonic. It is and always has been my drink of choice. The dogs just want attention. They simply want their mommy to sit on the couch with them and watch television. But I find I can't sit still--I need to keep moving.

    I want the next 2 weeks - month over. I want to know what we're ultimately dealing with. And I want it to be simple and as easy as it can be for Mom. And then I want to play golf, I want to see a movie, I want to take a vacation where I can relax for a few moments without the world crashing in and slamming me to the floor.

    It's easy to "want" all those things--and if I could have my choice of only one it would be the "simple and as easy as it can be form Mom" choice.

    Time will tell....it always does.

    Shopping--a Positive Moment

    Mom has gotten back to calling me again--that's a good sign. And yesterday was an even better day because she wanted to go shopping for new blouses that buttoned down the front. Her motivation behind such a decision was that she 1) didn't have anything but polo shirts that she has to pull over her head and 2) she wanted some nice things to go out in after the surgery because she was not going to be seen in the big button-down shirts I brought over! This was HUGE!

    So off to Kohls we went where no matter what day of the week it is, there is always SOME kind of sale going on--and today was a good one: 50% off of everything or Buy 1, Get 1 Free! The "take" of the afternoon was pretty great. Mom got 5 new blouses....she's going to need a drink with a little umbrella in it to really pull off the ensemble--they are all pretty tropical/flowery prints but who the hell cares!....along with 6 pairs of socks and 8 pairs of underpants. She did not get any bras because, as she stated so eloquently, "If Medicare pays for 6 new bras a year the last thing I'm going to do is spend a fortune on new ones now!" GOOD FOR HER!

    As we were heading toward the cashier she saw all these cute flip-flops......and while I'm not the biggest flip-flop fan in the world because the thong hurts my toes unless I find "just the right kind of fabric," I now have 3 pairs of flip-flops that I will wear all summer. It made her happy to buy them for me so I simply allowed it.....and they were all 50% off so who can honestly pass up a pair of flip-flops with a suede thong for $7???? Not even me!

    Thursday, July 3, 2008

    Dr. Hiotis--the "C" word becomes official

    Back to back days of driving to NY from Delaware....actually no big deal. Considering the appointment today was at almost the same time as yesterday we were once again trapped in cross town traffic on 34th Street. And to make matters worse we were boxed in by those stupid double-decker sight-seeing buses.

    Parking was easy; checking in at the registration desk was easy and the women behind the desk were even nice. Something was wrong. Oh wait! That's right. We were at the NYU Cancer Institute and the women at Registration damn well better be nice because all the folks checking in HAVE CANCER!

    We went upstairs and Mom was quite quiet. There really wasn't anyone in the waiting area (it wasn't a room -- it was a whole floor) who "looked like they had cancer" ...thank God! THAT would have put her over the edge.... But still, Mom was quiet and I let her be. Eventually she said, "There are only women here." And I said, "That's because the 3 doctors here specialize ONLY in breast cancer." This actually seemed to put her at ease for some reason. ...mine is not to question why, mere to accept....

    Within 10 minutes of our schedule appointment we were called in to see Dr. Hiotis. And within 30 seconds of her stepping into her office where we waited both Mom and I LIKED her. She spoke to Mom, not me no matter how hard I tried to "butt in." And Mom was happy about that. She spoke TO Mom, but KNEW that I was the one absorbing everything--this was one smart and GOOD person. She didn't mince words yet she was kind in her presentation. After she physically examined Mom, she said,
    We're going to send you upstairs for a fine needle biopsy in a few moments but my suspicions are that we are dealing with a cancer in your right breast. I see what Dr. Mitnick is talking about on the films with regard to the left breast...wait, let me show you...here, this spot. And while I'm inclined to think it may be a concern it is not at this immediate time. We need to focus on the right side and get that taken care of as soon as possible. The left side we will watch very carefully but after examining her I cannot feel or even sense the suspected mass on the left side. Your breasts are very dense and it may simply be a fatty build up that does not warrent attention. We will still watch it very carefully however. Also, I do not feel any swelling or lumps in the lymph nodes at this time. So we will isolate the sentinel nodes during surgery only. If they are clear I will leave the rest of them alone. If they show any sign of cancer I will remove them all during surgery.

    Given your physical condition and the location of the mass--which is directly behind the nipple, you are not a candidate for a lumpectomy and radiation therapy. I suggest we do a full mastectomy. I know this may sound extreme but I do not think you will do well with radiation which would require you to lie on your stomach for extended periods of time.


    At this point we headed into another office where a woman named Christina went about scheduling Mom for a PET-CT scan and Pre-Admission testing as well as the actual surgery. She was struggling with the folks at NYU Medical Center who simply didn't want to accommodate Mom because of the holiday weekend. As we were wisked off to another floor for the biopsy she said, "I know what is best for you and I will take care of it."

    We got upstairs to another floor, filled out more paperwork for insurance purposes, and we taken to an exam room. The doctor who arrived to do the biopsy....oy! Not nice--all business. Russian Jew who still spoke in broken English even though it was clear she has been in this country for the last 25 years. Mom was PISSED!!!! And she was in agony and she did what she NEVER, EVER, EVER does...she started to cry. But please note, she did this behind the back of the doctor and just before the doctor turned to face her she wiped her face and would NOT give the woman the satisfaction of knowing she made her cry. (..and at her worse, Mom is still the tough NY broad she was born and raised as.)

    While we waited for the biopsy doctor to return, my cousin Patty showed up with bagels and corn muffins. She just barged right in like she owned the place....oh wait, that's right, she does--she's married to Joe.....go back and read about the cousin who is the Professor and Vice Chairman at NYU. The biopsy doctor returned and confirmed what we all suspected: Cancer.

    We went back downstairs, with Patty and food in tow, to Dr. Hiotis's office. Christina had booked us for Tuesday, July 8th for ALL the testing and for surgery on Tuesday, July 15th. I had my "orders" to call Mom's doctors at home and prepare them to watch for the faxed test results and a medical certification form. Surgery could not be performed without release forms from both her primary doctor and cardiologist.

    Dr. Hiotis stopped by saving us a trip back down the hall to her office, again confirmed we were dealing with cancer and said, "I will see you on the 15th. After the surgery when you return for your post-op appointment we'll have a pathology report and we can move forward from there with a plan."

    I don't like no knowing what we're dealing with but I understand--if the cancer is contained it means one thing; if the lymph nodes show signs of cancer it means something completely different. Only pathology can confirm the next step.

    We got back in the car--the driver seat has completely molded to my ass at this point--and headed back to Delaware. And by the time I got home I finally hit the exhausted point.

    And now we wait. We wait a week for the next step.

    Wednesday, July 2, 2008

    Dr. Julie Mitnick -- a second radiologist's opinion

    Today we drove from Delaware to New York. A two hour and fifteen minute drive to the Lincoln Tunnel and then a 45 minute drive across town at HIGH FUCKING NOON! Is there anything worse than trying to get across town during lunch in NYC? Yes, actually there is. Trying to do it on 34th Street!

    For all you non-New York types (you're called "hicks" by the way) the definition of "across town" is going from 9th Avenue ACROSS the island of Manhattan to 1st Avenue. The definition of 34th Street....watch that Christmas movie about Santa Claus and you'll understand.

    I love it when I get honked at from behind because some jackass in an SUV sees my Delaware plates and wants me out of HIS city. Sorry pal but it takes all ove 30 seconds for one's breeding and upbringing to come back to them---get the fuck out of my way when I'm driving in the city or you and your girlfriend will never have children! It doesn't take much to remember HOW to drive in New York. It is a God-given gift and I have been blessed with the gift and skill of an expert.

    We finally got across town and after finding the building I decided to take advantage of my "dual personality" and utilize my DE plates: I pulled into the right lane of 1st Avenue and drove REALLY SLOW in order to find a parking garage on either 37th or 38th Street within the block Dr. Mitnick's office was on. People saw the plates, gave me wide-berth and I spotted a parking garage entrance between her office's side entrance and the adjacent apartment building. My NY driving ability locked into gear and I peeled around the corner at breakneck speed and pulled up to the parking attendent. Mom was thoroughly impressed and I believe she was also quite proud. She taught me well!

    Dr. Mitnick was wonderful. Mom had a REAL mammogram taken for the first time in years (the place in DE gave into her "I can't turn that way" stuff....the folks here pretty much said "tough shit" and made her twist and turn as much as possible in order to get decent films. As I did, Dr. Mitnick didn't even need the films to confirm what she knew just by looking at Mom's breast. The films merely confirmed the presence of the very large mass in her right breast and the possibility of another small mass in her left breast.

    After consultation and discussion with Mom, myself, and the entourage of cousins who all live in NYC and came for support (that's another story for another blog), she got Mom an appointment with Dr. Karen Hiotis at the NYU Cancer Institute for the very next afternoon! Dr. Hiotis is a breast surgeon and an oncologist and was willing to see my Mom prior to the July 4th holiday. THAT was great work by Dr. Mitnick!

    My aunt and cousins don't understand....while their invitations were real and we were both welcome to stay, Mom wanted to go home and drive BACK to New York the next day for the appointment with Dr. Hiotis. Why? Go back and read about her physical condition. Now do you really think she is going to be comfortable in anyone's apartment that is not handicap accessible? Heck she wouldn't even be able to go to the bathroom without gouging the door frame! And as crazy as it sounds, both of us love driving in the car and 2 hours and change of no traffic on the NJ Turnpike is a simple commute (that's right, you read correctly, no traffic!).

    So home we went....and besides, she was all worried about her cat and if her cat is what keeps her wanting to live then so be it!

    Tuesday, July 1, 2008

    Day Three - Eight

    The last 6 days have been fairly uneventful. In fact I'm not entirely sure they even existed. I have spent much of my time getting all of my proverbial ducks in a row with regard to the UDMB and DMA. I THINK everything is covered but only time will tell. Recruitment for the band seems to be going well--somewhere in the mid 280's at the moment and a bunch of people still missing from the database. It appears as if we'll be a solid 300 in membership again. Erin and Rob are busting their tails in the office and that's all I can ask of them.

    DMA? I will miss my friends this summer--we never get to spend enough time together as it is. But my responsibilities are here. I know that; I own that. Yes, there are plenty of days when I resent it--it's been over 20 years of caregiving on some level and I am, indeed, tired. But, as the saying goes, "It is what it is" and I accept it. There will be plenty of DMAs in the future for me to take part in so no time to wallow in self-pity.

    Mom has been doing good and not so good over the week. She's nervous (expected); depressed (expected); and at times none of those things. The most concerning issue has been her lack of communication. Mom has called me, on average, at least 6-8 times a day since Dad passed away back in 1998. This last week: not a single call. I have had to call her. This is incredibly concerning. I am giving her a little bit of space so she can come to grips with things but her silence is frightening. So I've been calling every hour or two for no reason at all. The calls go fine and she's really not aware of the fact that she hasn't been calling....I don't bring it up.

    Each day I have gone over the her place. We've either eaten in or gone out to eat lunch or dinner. Again, no matter what, keeping up strength and staying in good health (well, you know what I mean) is more important than anything right now.

    And in the evenings I go out for my "quiet time," my 2.5 mile run. And each night, around the halfway point when the endorphins kick in, I'm a mess. I keep running, but it isn't pretty. Lately I've been having quite the argument with God. He and I are not on good terms right now. Let's face it--what is the point of all this?? Hasn't my Mom been through enough in her life? Does she really DESERVE this final insult? She worked hard her entire life; she and my Dad didn't give me everything but I certainly didn't WANT for anything. A benign tumor on her spinal column robbered her of her independence--she lost almost all feeling on her right side; she has a fused set of vertebrate in her neck from the surgery; osteoporosis has increased her inability to lift her head off her chest; her right shoulder is frozen so she cannot lift that arm; she can no longer write--and when she is forced to sign something she is humiliated by the look of the signature. She is in a wheelchair because her balance is unsteady and with the weakness in her right leg she does not trust herself to stand/walk. And the worse part: she loved to drive and THAT was taken away as well.

    So again I ask God, what is the point of all this--hasn't she been through enough??

    Ok, I get it. It's my lesson to learn. I'm supposed to learn compassion, self-lessness, sacrifice, and patience. It get it. But for Pete's sake, why does she have to suffer for the sake of my learning impairment?

    So God and I are not on good terms. I run and I yell at him. ...and I do not care if the people who see me/hear me think I'm nuts. Maybe I am. But damn it, it just isn't fair.

    Right and once you accept the fact that life isn't fair it becomes fair. Sorry folks, not buying the psycho-babble bullshit today.

    So this week has been on the quiet side, and while I've written 9 pages of Brian's show, I still have 7 more to go in order to finish part one and I just don't have the energy right now.

    Tomorrow we head to NY for a thorough exam, a new mammogram and a second opinion.....let the proverbial games begin.

    Wednesday, June 25, 2008

    Day Two - Evening

    No matter where one ends up geographically, if your roots are embedded in New York, THAT is where you are from. After we returned home from an afternoon of surrealism, I spoke with my aunt and simply said, "It's not good." She simply said, "Hang up. I'll call you back." And with that the FAMILY took over.

    When you have a cousin who's husband is Professor, Vice Chairman and Director of Rhinology in the Department of Otolaryngology at New York University Medical Center, and who's daughter just finished her fellowship in Radiology and starts a job at Lenox Hill Radiologists within two weeks, you get out of the way and let the wheels of family take over. My aunt called back within the hour and said,
    Call her doctor right and get all of her films and reports for as far back as they will give you. If you can get them tonight you have an appointment tomorrow with Dr. Julie Mitnick at Murray Hill Radiology. If you can't get them tonight the soonest appointment we could get was on Tuesday. Call me back when you know.
    That was that. I hung up, called the imaging place and was told it would take them 24 hours to gather everything. I couldn't get them to move any faster because I wanted that day's ultrasound and their records office was already closed for the day--it was 3:55 PM....typical. So I said I would pick everything up the next afternoon, called my aunt back and told her to confirm the appointment for Tuesday---and she did.

    That night was fairly uneventful. No one had actually used the "C" word to my mother so she was in huge denial of the seriousness of the situation. I chose to allow her that little bit of sanity for the rest of the night.

    When I got home, I went out for my daily 2.5 mile run as I learned one very important lesson back in 1991 during Mom's first surgery and again in 1998 when Dad began to decline: take care of myself or I'm useless to her. Halfway through the run I "lost it." I kept running, but I'm sure I was quite a sight.

    Day Two - Initial Doctor Appointment

    Gotta tell ya, I really do not like this doctor. Never have. She's nice enough but hindsight is 20-20, and my hindsight slammed on the brakes so hard today that my seatbelt almost broke loose.

    I get my Mom to her doctor--a very basic internist--who looks at Mom's breast and starts asking those really stupid questions: "How long has it been like this?" "Didn't you feel the lump?" "Couldn't you see that it looks different from the other one?" Gee Einstein, apparently the 84-year old woman, who is in a wheelchair, who can't turn her head to the right because 3 vertebrate in her neck are fused, who can't lift her right arm because of a frozen shoulder, who has horrible osteoporosis, COULDN'T AND DIDN'T SEE THAT SOMETHING WAS WRONG!

    Yes, you detect hostility from me. Why? Simple. It all comes down to hindsight. Out of the blue it dawned on me at that very moment that in the last 6 or 7 years this doctor had not once given my Mom a REAL physical! It was always a quick reading of her blood pressure, a listen to her lungs and heart THROUGH her shirt, and the ending question of "do you need any precriptions?" That was it. This doctor had NEVER once LOOKED at my Mom's body to see if anything might be going awry.

    So yes, I'm angry. I'm pissed and I'm furious. Not only with the doctor for what could easily be turned into a case of medical negligence, but also because I didn't realize it sooner!

    About 30 minutes later we were at an ultrasound appointment where Mom goes for her annual mammograms--right, the same place that never saw anything suspicious. And yes, the ultrasound detected a very large mass in Mom's right breast. The doctor there then spent the next 20 minutes trying to get my Mom's doctor (the one we just came from) on the phone--but of course, her number is busy. IT'S ALWAYS BUSY! Finally he said, "Drive over there right now and demand to be seen. I'll keep trying to call and you should also try to get through. If you do have her call me immediately."

    So we drove back to the first doctor's office...and yes I got the nurse on the phone before we arrived and she acted like she didn't know who I was. (bitch) Needless to say, I pulled up at the office, wheeled my mother inside and was greeted with an "I'm so sorry" from the doctor. Essentially it was a full blown death sentence being pronounced! The next few moments were filled with more "I'm so sorries" and an appointment with a breast surgeon to do a biopsy the next afternoon. As we were leaving the doctor asks me if I want any meds for my nerves. I wanted to punch her dead in the face but I didn't. I simply said "No, I'm fine. I need to deal with this since no one else is." She didn't get the cynacism. Shocker.

    The Day all Hell Broke Loose

    There I was, checking email in the student center at ISU during the BOA Summer Symposium...actually I was done with email and was on the phone with UD's IT Help Center trying to figure out why I couldn't gain access to my course rosters (stupid other university firewalls were the apparent cause). Call waiting beeped in my ear, I looked at the phone to see who it was--it was Mom. I thought: "Just spoke to her an hour ago and everything was fine. She must have forgotten to tell me something. I'll call her back in a few."

    I finished with IT--they couldn't help....surprise....and called my back. She was upset and sounded scared as she announced: "My right nipple is bleeding."

    Right then and there the world changed.

    I was anything but pleasant because here I was 1200 miles away with no way to get home unless I was able to get a last minute flight. I argued with her to call her doctor--she finally gave in and called. The reason for not calling: "I have no way to get there so why should I call?" Gee, thanks for the guilt. I offered to get a nurse to stay with her but oh no, her pride would have none of that. So here we were, arguing on the phone about her calling her doctor to see what to do because Lord knows the daughter who is 1200 miles away is a better expert!

    When she finally hung and called, I hopped online and booked the first flight out of Bloomington, Illinois. How I got a flight for $170 I'll never know, but I did. And now I had 2 hours to get all my shit packed and to the airport. And when I arrived at the airport I found I had successfully booked a flight for JULY 24th and not JUNE 24th. Helplessness and stress finally shut anger and frustration down: I went hysterical on the ticket agent. ...and he got me out of there on the next flight.

    I managed to get to Mom's apartment at 1 AM....took one look at her breast and knew we were in trouble.