Life at the ECC

THE PLACE

The Hines VA ECC is a geriatric nursing home. I am by far the youngest person there if you don't count the vegetables. Not a pretty word, but an apt description. The young guys live next door and across the hall and there is nothing there. The rest of the patients are either bed ridden, wheelchair bound or barely mobile. I am likely the youngest quasi healthy person there and it seems I am the most mobile. It is supposed to be a half mile journey from the ECC to the main hospital and I believe that. The nurses are always surprised when I tell them I plan to walk every day and not ride in a wheel chair. Although it isn't too bad, the routines may kill me.

So far I have been woken up at 3am to take my vitals and at 5:30 am to draw blood. Morning meds come between 5-6:30am and breakfast follows between 6:30-7:00 am.

It seems that you can opt to eat in your room or in the dining hall. I think that if you want to choose what you get to eat, you may have to eat it in the dining room. What I do know is that eating crappy food in bed alone while watching crappy tv is never as much fun as chatting up the old farts. Besides, it forces some of the patients out of their beds and moving.

THE FOOD

We are eating hospital food, nuff said. It is a matter of degrees of edibleness. I have yet to taste the elusive chocolate pudding and am already tired of canned fruit. People can choose to eat in the room or in the dining room. Breakfast in bed works for me but because I asked to be able to choose my meals off the menu, I believe I am stuck eating breakfast in the dining room and not in bed. Hell, I wear my jammies to breakfast. Most of the other men are wearing theirs, I figure fair game.

The food tends to be very bland, generally soft and they are not fans of fresh ingredients. I finally hunted down the nutritionist and now I am able to select from a menu every day except for the Ensure Plus I now have to drink twice a day for the protein. It seems that radiation burns protein calories?? I do find myself buying snacks at the canteen, which is almost all the way to the main hospital, so quite the hike. I keep telling myself that bag of chips is NOT worth the walk so I just stay home.

A typical breakfast includes frozen waffles, canned fruit, toast, margarine type spread, fruit juice a small thing of milk and a cup of coffee in a plastic cup. Most mornings we also get a small box of some type of cereal. The eggs are simply inedible. They swear they were not powdered eggs, but whatever they are, they are caca laca. The nurse jumped down my throat when I said I was hoping to lose a few pounds. Of course, this was before I saw a menu and realized that the mile hike to treatment and the food they were giving me wouldn't require any extra effort on my part.

THE ROOM

The beds are hospital beds and the pillows and mattresses are covered in plastic. Although they adjust, they are far from comfortable and I won't even start on the sheets and blankets. The rooms are double rooms with some rooms sharing a bathroom between the rooms. Because I am a girl, I was put in a double room with a non-share bathroom. The bathrooms are quite large and there is a sink both inside and outside the bathroom so when I am taking a shower, the nurse can still give my roomie a sponge bath. There is a locker for each patient and a dresser and nightstand for each person as well. I have a key to the locker but have been told by staff and patients that the locks don't mean anything as everyone seems to have a key to all the rooms.

THE ROOMIE

Got the place to myself my first night in and slept rather well. I about froze my ass off in the A/C, but grabbed a clean blanket off the cart in the hall and was warmer the second night. My roommate moved in during the day in Wednesday while I was running about to various appointments. When I came in to prep for supper she was getting out of the bathroom and there was an alarm going off from the wound vac machine she was supposed to have been hooked up to. The alarm was going off to beat the band. A nurse was called, she was reattached and the alarm was silenced, until an hour or so later when she attempted to do it herself and managed to forget to clamp the ends of the tube so that wound fluid poured all over the bathroom floor and the floor of the room. The next morning I made sure housekeeping was called to mop the floors, but by day two, the bathroom reeks again of pee.

My roomie is an older black woman who served during Viet Nam. I think she had a colostomy bag line installed and the wound is hooked up to the wound vac. While she is able to move, she has to disconnect her machine to do it. Needless to say, we got NO sleep the first night she was in. Last night I asked the nurse to let her go pee and then hook her back BEFORE we went to sleep. No clue how she made out, but I slept like a baby.

This was a first draft and just rough notes for those insomniacs who couldn't wait for me with a cup of coffee in my hand! I have now at least spell checked so it is a bit of an easier read.

The Answer!

No sooner did I get finished blogging my fears then the lady from the VA nursing home (ECC - extended care center) call me to tell me she had my answers.

I will be staying at the ECC because the rooms are nicer and food is served in the building. The ECC, unlike the HOPTEL (like a Navy Lodge or barracks), has internet service for its residents. I do NOT need to bring my laptop because I would not be allowed to access the internet on my laptop. Still not sure of all the details, but there is NO charge for staying at either facility. The ECC serves food in their building (not sure if it is in the room or dining room) and the HOPTEL requires you to walk over to the actual hospital to eat your meals in the cafeteria.

So, bottom line, no cardboard box and no hot plate :-)

No clue...

Tomorow is the big day and I am clueless. The lady called from the nursing home last week and said she was confused about where they were putting me....she was supposed to call me back but never did so I am going into this blind as a bat.

I also have to figure out if my only source of internet is the new starbucks about a mile from the VA. I am bringing the laptop and hoping for the best. I still need to job hunt and I have had a few nibbles on the roommate front.

I expressed my concern over the possibility of having to pay for lodging or food. If self pay is the only option, I need to start looking for a large cardboard box and a hot plate for my ramen noodles....LOL I received another bill from Loyola for the follow-up mammogram, but I am pretty sure that is a mistake and the VA is supposed to cover it. I will call Loyola today and try to get them to figure it out.

Tomorrow I have to check in and I have NO CLUE where they are putting me or what the deal is. This is the VA so God only knows....LOL

I spent the weekend volunteering for both IGo cars and for the Chicago Criterium. Apparently, because I was wearing a bandana, I forgot to put my hat on at times and pretty much fried my face, even though I was vigilant about trying to stay in the shade at all times. It isn't really sun burned, but it is no longer ghostly pale either. I had a great time and it brought back wonderful memories of helping others. I miss it and it saddened me to have to tell them that I had to take yet another 5 weeks off to finish treatment.

The Phantom Itch

Aside from the fact my feet still bother me, I have developed what appears to be a phantom itch. I will have an itch in and around my chest area and no mater how quickly I get to it or how hard I scratch, it doesn't do anything to abate the itch. It even seems like the itchy spot moves. I figure it is just a bad combo of internal healing and dead nerve endings, but man it is driving me nuts.

Last weekend

Last week, I received a phone call from Becky asking me if my computer and printer were up and running and I was thrilled to inform her that I was back in the 21st century. Becky asked me if I wanted to meet at the Evanston farmers market and then do lunch. I brought 1/2 a pound of bacon, purchased killer tomatoes and had one of the best BLT's I have ever eaten. After lunch we attended an afternoon showing of Harry Potter. It was a wonderful day AND I can't wait to hit the farmers market again as soon as I figure out the cash flow thing....LOL

New Stuff

Still haven't found a roomie, but I reposted the ad. With any luck, I will find someone soon. It will be hard to show the place if I am not around and while my current roomie might be able to show the place for me, it defeats the purpose of meeting the tenants before they move in. Have to make sure the personalities mesh if you are going to share a bathroom!

Miss Kitty is in love with my current roomie Adam and will jump off my lap to meow at the door the second he walks into the building and then runs to the door to meow. She follows him around the apartment and rubs up against his legs any time he stops. She is such a whore!

I have an interview today with a new temp agency and Holly rightfully convinced me to wear my wig. I am currently sitting at the public library killing time and will slip into the bathroom to put on the wig before I leave. The minute I am out of the building though, the wig is off.

I LOVE that I can now feel free to hop in the shower any time. I finally feel clean!

The saddest thing...

The saddest thing in my life right now is the fact that I have no one to go see the new Harry Potter film with :-(

OMG not again! & How could I forget?

Wednesday was a long ass day. I left home at 9am and borrowed Nikka's car to drive to the VA. I was doing fasting blood work so no coffee and no breakfast. I valeted the car and only left the VA at 10:50. I immediately drove over to Loyola (next door) and again valeted the car. I checked in at the breast clinic and grabbed my first cup of coffee and a muffin. At 12:50 I was informed the radiologist did NOT like the looks of the mammogram for my RIGHT breast and I was going to have an ultrasound done immediately. I called over to the VA to let Dr. B know I would be late for my 12:30 with her and waited for the ultrasound. At 1:50 I was informed the large troublesome lump was a pocket of fluid, likely from the removal of my port, and released. I retrieved the car, drove back to the VA, where I was then informed that I was free to eat whatever I liked, hence the hot dog and salad on the way home :-)

How could I forget to tell everyone that I am once again a tatted woman?? On Tuesday when they did the preliminary pictures for the radiologist, I was given 3 tiny dot tattoos. One dot in the middle of my boobs and one dot above each hip. Apparently these are the dots they use to line me up on the machine when they do the radiation therapy. What a total hoot. The actual tattoo I paid for wore off but these should last forever!

Back on fruit!

As of yesterday and per Dr. B. I am back on fresh fruits and veggies with no restrictions on my diet. On my way home I stopped at Portillo's and got a Chicago style hotdog (tomatos and onions) and a chopped salad. I may not have tasted it, but the food texture was heavenly.

I spent money I didn't have to buy a 3 pound bag of fresh cherries! I can't really taste them, but boy do they eat well. Now all I need to do is regrow the tastebuds so I can actually appreciate what I am eating.

Radiation Update

I am scheduled to start radiation therapy on Wed. July 29, 2009. I don't know exactly how long I will have to go, but it should be around 5 weeks. I CAN stay on the grounds at the VA M-F so I won't have to commute! WOOHOO! Miss Kitty will hopefully be spending quality time at camp Grandma and will love the 24/7 nature show.

Now that I know my therapy will be ending after 9/1, I really need to push to find a rommmate.

I may not make rent...

...and moving is not an option. I am NOT looking for help, I am merely venting my frustrations at my current situation. I am fully aware of the fact that this is the perfect time in my life to be unemployed, but it sucks to be dirt poor broke. I spent the morning at Child Support Services downtown yesterday and found out that because unemployment is paid a week after the two weeks you are claiming and because child support is due the first day of the week in question, I will always be 3 weeks behind in child support even though he has gotten every single penny he is owed.

What this means is that they are now sucking out my "delinquency" from my unemployment to make up the amount that the computer shows I owe. Also, even though the money is taken out of my unemployment check directly, because it takes a while to get to Child Support Services, I will always be behind in the eyes of the computer. I went out of my way to make sure I wrote checks for the first two weeks that unemployment did NOT suck money out, but I still show weeks behind.

I have posted an ad on craigslist for a 9/1 roomie and I have someone coming to see the place on Thursday. I know that everyone has offered to help me move, but the reality is that I won't have a security deposit and I would have to pack and move everthing only a mere week or two after finishing radiation, which I am told will kick my ass. I have my radiation mapping appointment this afternoon and will post the news as soon as I know.

So, pray for a roommate! I love my apartment, when it is clean, and reallllllly don't want to move.

Like I said, not looking for a handout or a hand up, just venting.

The best laid plans...

As it turned out, the radiologist cancelled my Friday appointment and my friend Nikka called me to say take her car. So, Michael did not get to ride the two train one bus gravy train, BUT he did go with me to the VA to get my pic line flushed and to update my medication information with the pharmacy. It wasn't walking my mile, but it was a baby step.

Tuesday I go to see the radiologist and Wednesday is the really big day. Wed. I find out if I am back on fruits and veggies AND they will likely take my pic line out, which puts me one step closer to taking shower like a normal person!

I had a great visit with Michael. We had many talks and I think he realizes now that I put my life on hold for the boys and that is why my career is dead. Just when I was putting myself in a position to get into the non-profit sector, I was diagnosed with breast cancer and it put my life on hold AGAIN. We also discussed the fact that I feel I made a mistake in sending them to Japan and that after all those years of going it alone, it sucks that their dad stepped in as a super hero and that they all now treat me like dirt. I love my kids, I just hate what their father has turned them into.

A grand adventure

Tomorrow I have my appointment to do the pre-scan for the radiation therepy. They have to do a cat scan or mri to mark the area to be treated. I also have to have my picline flushed for what I hope is the last time! Michael will join me for this grand adventure and we will ride the redline to the blueline to the bus (aka the gravy train). I have to make the trip and could use the company. I think of it as walking that mile.

IT LIVES!!

My laptop is up and running at the house! I am BACK online and glad for it! I still have to work on finding an adapter so I can print at home, but that is the LEAST of my worries.

The family reunion was fun and exhuasting. It was only a few days after my last dose of chemo so it was a little rough going. I probably appeared rather stand offish to my family as I did not hug on anyone or spend any time crawling around with the kids. I was not snubbing anyone, I was just looking to avoid sharing germs! Virtual hugs and virtual kisses to all my family. It was good to see everyone and it seemed to do a world of good for dad to see everyone.