My life since metastatic osteosarcoma diagnosis October 2002. I am Audra, a 34 yr old female. My husband is Glen and our 6+ year old daughter is Angela.
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Friday, November 29, 2002
Any holiday where food is the center of attention is tough for a person following a macrobiotic diet. Not just macrobiotic, a restricted macrobiotic diet. And being Italian, it goes without saying that all holidays are centered around food.
Thanksgiving dinner was at Glen's sister's house in Abington. Audra's mother, father, sister and brother Tom (no, that's not a typo) were in attendance. There were twelve adults, three children, a ton of food and lots of leftovers. Audra and Angel, the non-meat eaters, had acorn squash stuff with rice and a bunch of other vegetable based side dishes. I know what you're thinking, and I too have my doubts about Angel’s vegetarianism. Let's just go along with her for a while and some day will find her hiding in the basement with a box of Slim-Jims.
Audra's been moving about pretty well the last few days. She spent some time in the kitchen yesterday preparing food with Angel. She has gone for walks around the block each of the last three days. She's going grocery shopping in the city this afternoon with Angel. But in the meantime she's fooling around on the piano which Angel was just doing a few minutes before her.
Next Tuesday Audra goes back to NY to get her stitches removed and we'll probably get the lab tests for the removed tumor. We're not expecting anything except the obvious from those tests. Audra gets a bit anxious when she thinks about the future and the treatments that may be forthcoming.
Friday, November 29, 2002
Wednesday, November 27, 2002
Wednesday: Soup, poop and flowers. Say what?
Soup, that's all Audra wanted when she woke up. For some reason she decided that she wanted to have a few different soups available for eating any time she wanted them. Soup she wants, soup she gets. Audra and her sister Angel have been cooking all day. Well, Angel has anyway. Some of the things they're cooking are for Audra's macrobiotic Thanksgiving was well. Tofurky anyone?
Those intestinal problems noted yesterday are no longer a problem. Audra emerged from the reading room with a big smile typically on my face after such an event. As noted by the great Birdsboro philopher, Joseph Hagan, there are just three sacred activites from men, eating, pooping and sex. Mr. Hagan observed, each of the aforementioned activities will take precedence in a man's life at any time, on any day. I guess these are the common man's Maslow hierarchy of needs.
Flowers for sale! The house is filling up with flowers. I thought we had a lot of house plants before but now every horizontal surface in the house has a plant or a flower on it. Thanks to all who have called, sent flowers, sent emails or kept Audra in their prayers. Angela and I pray for mommy to feel better every night.
One other note, the last 10 minutes of they Ya-pYa Sisterhood movie have been found. The unnamed sister-in-law survived the Fario girls' verbal attack. She, like I thought is was funny.
Wednesday, November 27, 2002
Tuesday, November 26, 2002
From Glen: Audra's first full day home was a bit of an adjustment. Getting used to regular food was a bigger challenge than she/we had thought. Apparently her body got used to the liquid I.V. diet. Regular food, albeit it macrobiotic, seems to have clogged the digestive system. How one can have an such a big appetite and a 'clogging' problem at the same time is beyond me.
Noise too is a problem. Audra said that she's starting to hear a bit better in her right ear. We found that no matter how many times you tell a 5 year old that she has to talk quietly, like she's in a library, she doesn't seem to understand that means beyond just the current 'word' she is saying. Thank goodness Angela's cousin Paul came over. Immediately upon his arrival they headed straight down to the basement. After Paul left, Angela spent 15 minutes helping me recaulk the shower. That's really 15 minutes of me telling Angela to "get away" but not too far away to bother Audra.
Dutch is finally back home. I picked him up late this afternoon. He was really excited to be home and to see Audra. He really, really loves Audra. She takes him for walks and for rides in the truck, but he should still love me best. I let him run free in the yard and throw the ball around with him. Audra is the only person who regularly use shis electric collar whenver they walk out the door. Dutch the dog is just another stupid male I guess.
Audra and Angel just finished watching 1 hour and 50 minutes of the movie "Ya-Ya Sisterhood" or something like that. Apparently the movie is actually 2 hours long but the person who taped it, let's just call her the "Ya Ya sister-in-law" didn't tape the entire movie. The girls aren't too happy right now. Be certain that said sister-in-law will get an earful in the morning. I'm sure it will be toned down compared to what I heard them say this evening.
But even after the abrupt ending to the movie, Audra retreated to the kitchen for a snack. I think it was chic peas. First question, can chic peas really be classified as a snack? Second question, are chic peas like peanut butter or prune juice to the intestinal system? There should be a manual with this kind of information.
Tuesday, November 26, 2002
From Glen, Monday recap: She's back. Audra yelled at me twice within two minutes of leaving the hospital. I was supposed to drive safely, slowly and smoothly in NYC, please! It took 30 minutes to get out of the city. Once we got through the Lincoln Tunnel it took just and hour to get home. Except for the city, it wasn't too bad.
Audra got comfortable at home while I ran to get her prescriptions filled. After 3 hours getting a few simple prescriptions fill, I finally returned home.
Only a little bit of Audra's scar was sticking out from under her bandana. Angela took a quick look and asked if it hurt and why the doctor did that. The standard answer, " to fix some of mommy's boo-boo's and it really didn't hurt." Audra removed the bandana and we asked Angela the describe shape of the scar. "Kind of like a 'C'. When are we picking up Dutch?" A 7 1/2 inch scar and a bunch of stitches and the 5 year old wants to know when her dog, Dutch, is coming home. I'll be picking him up sometime today, Tuesday.
All Audra wanted to do yesterday when she got home was eat. And she did, macrobiotically of course. Between meals she rested. Eat and rest? Can I get paid to do that? Audra also spent a significant time on the telephone. She was catching up with friends and family who haven't been contacted since the operation and aren't checking this site. Being awake nearly the entire day for the first time, Audra was now getting tired.
With Angela in bed around 9pm, Audra took a hot bath and retired to bed around 10pm. Audra's sister Angel, who's stay with us for a while, retired to the basement to watch the Soap Opera channel---yes, its really exists. I was glued to the Eagles game in the family room. The more things change, the more they really stay the same.
PS - Thanks to all of your notes, emails, calls and flowers. Audra still has not read the emails but I did let her know they are waiting.
Tuesday, November 26, 2002
Sunday, November 24, 2002
From Audra: I’m looking forward to coming home tomorrow. I can’t wait to get out. Angel and Nikki bought me a huge, nearly life-size doll. Angel carried the doll on her back and told me that she thought someone was following her. We got a good laugh out of that. Glen took some pictures of me and the doll. You may see them if he ever figures out how to post the pictures on this web site. If it’s free, he’ll do it.
I’m looking forward to normal food. Normal for me is macrobiotics. Ellen and mom had been cooking for me the week before surgery. I hope both will be able to continue when I get back. They’ve been a great help.
Just before Glen left Langhorne this morning, he called our friends Regina and Tom. They were on their way to Trenton to catch the train to come see me. Instead Glen picked them up and drove them to the door of the hospital. Glen said it took just over an hour from Trenton to the hospital in NYC. That was a Sunday afternoon. I hope my ride home tomorrow, Monday, is just as quick. Did I mention that I was looking forward to going home?!?! It was great to see Regina and Tom. Regina had said the she mistakenly erased Glen’s message so she never really got an update from my surgery. Regina pretty smart, really!
I know I’m feeling better because I’m already getting anxious about what might be next for me as far as treatments go. I’m also worried what Angela will think when she sees my beautiful scar, about 7 ½” in a “C” shape behind my right ear. I miss Angela but Glen keeps reminding me that within a few minutes of seeing her, we’ll be telling her not to do something. Some things will never change. Be prepared for the scar if you come see me. I’ve been told that you can’t see the incision unless you look at me from the left. I hope so but it feels like I have a brick attached to my head.
Apartment update: Nikki and Paul found 3 more cockroaches. One was in the downstairs bathroom and two in an empty closet. Well, empty except for Nikki’s clothes. Nikki is our resident ‘neat freak’ so its extra funny that the cockroaches were in her closet. Isn’t NYC great?
When I get home tomorrow I’ll start reading some emails. Glen’s converting us to Comcast so my new email address is lloydaf@comcast.net. Glen’s is lloydgj@comcast.net.
Hi Valerie, welcome to the web. Perhaps email can be your next conquest.
Sunday, November 24, 2002
Saturday, November 23, 2002
From Glen again: Audra is recovering quite quickly. The surgeon stopped in early this morning before any family members arrived. Audra asked if she was ready to go and she said the doctor thought about it for a second then Audra volunteered to stay until Monday. So she and doctor agreed to a Monday discharge.
Overnight Friday to Saturday, Audra got in and out of bed on her own. She had little choice since she had to use the bathroom and the nurses were not timely to her call. Judi from the neighborhood came up for a few hours this morning. I met Judi at Penn Station and quickly introduced her to the NY subway system. When we arrived at the hospital morning, I saw a marked improvement in Audra's gait and color. She was moving freely and her cheeks were nice and rosy. She must be getting better because she complained about breakfast and was looking forward to a good meal. Audra can tell you how long she had to wait for her sister Angel to deliver that meal. When I left Audra's room Saturday evening, she was free from all tubes and electronics. And except for an antibiotic and a steroid to reduce swelling in the brain, she's drug free. No painkillers, no IV's.
Since Audra is coming home Monday, her father and I decided to come back to Langhorne tonight. After breakfast tomorrow with Angela and my sister, I'm going to return to NYC early Sunday afternoon with my car. I'll stay Sunday night and I'll drive Audra, mom and Nikki home on Monday. BTW, in addition to watching Angela over the past week, my sister really did a great job cleaning the house. In true Karen style, she left no footprints in the carpet. Those of you that know Karen know was I mean. I was thrilled coming home to the house. I know Audra will be too.
Saturday, November 23, 2002
Friday, November 22, 2002
From Glen: Its late Friday afternoon, about 12 hours from the start of yesterday’s surgery. Mom and Dad arrived at the hospital at 8:45am this morning, I got there soon after. Audra was still in the recovery room. Apparently no beds were available so they just kept her there. The recovery room was gearing up for a busy morning so we were quickly asked to leave. That makes about 4 times in 24 hours we’ve been asked to leave. We’re such troublemakers.
Around 1pm we found out that Audra had moved into a regular room, 10B-33. Audra is getting her wits about her. She is fully aware of everything going on albeit she’s only awake about 10 minutes of each hour. We got a few smiles out of her this afternoon when we hung some pictures that our neighbor Judi, her daughter Samantha and Angela made. The doctor stopped in at 3:30pm to check on Audra. He wants her up and about by tomorrow, Saturday. Once Audra heard that, she ordered the return of her toothbrush, pajamas and slippers. I think she’ll get out of the bed before the night is out.
We haven’t seen the scar yet. She does have a nice size bandage behind her right ear where there is a little blood leaking out. There is also some swelling around the incision and more swelling below the ear and the right side of her neck. Nice image, huh? If one would look at Audra straight on or from the left side, you would not even know she had surgery. Her color is great and as the medication is wearing off, her eyes are opening wider and becoming clearer.
Friday, November 22, 2002
Thursday, November 21, 2002
As told by Glen on 11/21/02: I didn’t sleep very well last night. Maybe it was general anxiety or, maybe it was the huge cockroach I saw in the bathroom just before I went to bed. I couldn’t take anything to help me sleep, no drugs before surgery plus I wasn’t allowed to eat or drink after midnight.
I walked with Nikki and Glen to the hospital from the apartment, about 15 blocks. It helped being out in the cool air and among the people. It kept my mind off things at least for 15 minutes or so. We arrived at the hospital at 9:30am, a half hour early. Coffee and tea for everyone except me then up to admissions.
Look out, brain surgery patient, special case coming through….
No such luck. We sat and waited, and waited, and waited until 3:30pm. Six full, anxiety packed, starving hours. They finally called my name. And not soon enough, dad simply ran out of things to read in the waiting room. He didn’t say two words in the six hours but he read everything.
We found out later that my doctors were in surgery from 8:15am until the time they called me. They’re predicting 3-4 hours for my surgery. I say, take your time. While waiting in the pre-op room, I heard someone puking, repeatedly. Since my doctor heard the guy too, he assured me that neurosurgeons have much better drugs so that won’t happen to me. Okay, I waited long enough, and heard enough. Put me under quickly and let’s get this over with.
From Glen:
As soon as Audra went in, we ran across the street from the hospital to A Big Fat Greek Wedding kind of restaurant. By 6pm we were back in the waiting room. Then, at 7:30pm we were unceremoniously kicked out of the OR waiting area. Who knew it even closed? Hector, Pedro, whoever told us we had to leave and retreat to an 8’ x 8’ physician consultation lounge located 3 feet from the waiting room. That “cube” already had three grieving family members from another operation, it seated 4 total, so we retreated to the main lobby of the hospital, all 5 of us.
At 9:30pm, exactly 12 hours after our arrival, the doctors met us in the lobby and recapped Audra’s procedure. They estimated that 50% of the tumor was removed. They avoided anything too invasive, assuring her a comfortable recovery and a chance to battle the cancer via other means. Good news? Not exactly. Bad news? Not really. One surgeon suggested enrolling her in a study being conducted in conjunction with Harvard University where they’re using a new oral chemotherapy drug to retard the growth of cancer cells. Both doctors agreed that any treatment from this point forward is a long shot but one never knows. The surgeons will consult with Audra’s oncologist on the program. I told her just before surgery, no matter the outcome, this is not the end, its just the beginning. Between macrobiotics, technology, pharmacology and God, sequence is up to the reader, one cannot predict what another 6 months, 1 year or 5 years may bring. Audra’s a fighter and she’s not willing to give up easily despite the test on her convictions over the past month.
What about the 50% of the tumor they couldn’t get? Doctor said that it was penetrating in different nooks and crannies of her brain and he wasn’t comfortable hunting and pecking, jeopardizing important nerves and other brain functions. Of course the doctors didn’t say “nooks and crannies” or “hunting and pecking” but that’s how I can best recall the image he described. You get the point.
Given the hour, I tried to convince Angel and Nikki not to call everyone on Audra’s “must call” list. However nobody wanted to face Audra and tell her that someone wasn’t called. So we called. Angel, Nikki and I divided the calls. Nikki and Angel were calling people they didn’t know. Kudos to Nikki and Angel, they’ve been amazing.
At 10:15pm we finally got to see Audra in the recovery room. Groggy is an understatement. A nice C-shaped bandage behind her right ear. But in true Audra fashion, her first call was for “pain medicine.” She never asked about the surgery. She was happy should could see and hear. I think she was even happy to see me. I think I like Audra on drugs.
BTW, there’s something cathartic about writing this log. I’m not exactly sure why, but it feels good.
Thursday, November 21, 2002
Wednesday, November 20, 2002
We arrived in NYC at 5pm via train, via subway, and we're still alive. Note, you cannot fit a person and a full-size suitcase through a subway turnstile. 2BR, 2B apartment isn't bad for NYC but second bedroom is in the basement that's fully finished. The apartment was about 90 degrees. It took about 15 minutes to find that there was not thermostat, just a hose-like valve to turn off and on the radiator. We "cranked" it down.
I'm doing fine given what's coming tomorrow. Glen noticed me limping slightly today, favoring one leg. I didn't know I was doing it and nothing really hurts. We're waiting for my sister to pick a place to eat -- she already had a few -- Dad's reading his book and we're not sure he even knows he's in NY. I'm feeling pretty good now but I'm not sure how long this will hold. As soon as we walked in the door, Glen got a call from the Dr. office confirming my arrival at 10am tomorrow at St. Luke's Roosevelt for surgery. I was hoping they were calling to cancel. Perhaps too wishful!
Wednesday, November 20, 2002
Sunday, November 17, 2002
The final weekend before my surgery. We had a big dinner at mom and dad's yesterday at my request. I had fun but Glen pointed out that I zoned out a few times. I thought the gathering would lift my spirits, and it did for some time. But then again, I thought too of the possibility that I might not be around for gathering like this in the future.
In general I feel fine but when I think about the surgery and my last scans, the more aches and pains I feel. Glen reminded me that my all previous "spots" of cancer have always bothered me until the next test revealed something new and the old spot goes away almost instantly. He reminded me of a few years ago when I wouldn't sleep on my right side because the doctor told me sI had a leision or "spot" on my hip. I haven't thought about my hip for over a year.
At night my mind races with thoughts of the cancer in my body. I am trying my hardest to turn those negative thoughts positive. Glen and I chatted about the "why me" feelings I was having. God does things like this for a reason, right?
Sunday, November 17, 2002
Tuesday, November 12, 2002
Met with my macrobiotic counselor today. He tightened my diet and recommended a few procedures to prepare me for next Thursday's surgery. I'm still anxious about the surgery. Just thinking about waking up afterwards in the intestive care unit makes me sick to my stomach. Glen and I try to explain what going on with me to Angela. We want to be honest with her but we don't want to scare her. When we explain that the Dr. is going take out a boo-boo on her bone, Angela wants to know how they're goinig to do that without making another boo-boo. Good question!
Tuesday, November 12, 2002
Wednesday, November 06, 2002
After two days of tremendous anticipation, today we received a surgery date of 11/21/02. With 5-10 days of recovery, this won't be the first Thanksgiving that Glen and I spend in a NYC hospital.
Luckily for us, Angela will be off from school the entire week of 11/25. Glen wants to bring Angela to NY, I want her to stay home with her friends and family. We'll work this out, I'm sure.
The anxiety is high and the tiny pills don't seem to help much.
Wednesday, November 06, 2002
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