andsoitgoestoo

Just sitting here in bed with my new laptop that I got because I want to try and work as soon as possible after the surgery but sitting in that unforgiving chair in my office seems like ... not something I will want to do.

I haven't voiced my more darker thoughts since all this Big C stuff because, well, it wasn't well formed in my head. But yesterday I did so much I am exhausted and just can't get out of bed.

Yes, I am glad after tomorrow I will not have any more periods, no more lengthy bleeding episodes but it does feel weird to know I can never get pregnant.

Now don't get me wrong. First of all there wouldn't be any ... oops pregnancies. Unless I was raped of course. (sorry my darker side is front and center)

But let's just say I met some wonderful semi-butchy dyke who wanted a kid but didn't want to birth it. I LOVED having my kids. I am proud that I did both naturally with no meds. Not that I judge anyone else ... it was just what I wanted and what I did. Although looking back Henry should have been a c-section. As I tell him ... he ripped me from here to there. (that is as graphic as they can take.)

And I did it well. (of course except for the blood disorder that Henry got because me and his donor has some rare as fuck recessive gene ... which I still feel guilty about.)

Oh well. I am sure this is the same feeling one has with normal menopause. But when I was going through that I felt like ... yay ... and it felt natural.

This doesn't feel natural and it surely isn't fair.

Can you tell I am getting a bit emotional?

Oh well I need to finish organizing the house so if I stop breathing tomorrow whoever gets to clean out this house will say ... boy was she organized. Trust me. This makes me happy.

I hear Michael downstairs making what I guess is breakfast. He is slow and he doesn't clean up after himself but you know what ... today he will! Cuz I have laundry to do and bills to pay and plants to water and kids to hug and I still have to decide what my last meal tonight will be since I can't eat after midnight. I bought a seafood medley at Trader Joe's but Michael said I can't put the calamari in with the rest of it. ahhhhhhhhhhhhhhhhhhh.

And I really wanted to live with him?

And so it goes.

Susan

I seem to go into anxiety mode in the late afternoon. And good news, I found a solution that doesn't involve alcohol or prescription drugs!

I find that cooking is really helpful. This week I made pesto pasta, fried up a bunch of zucchini and last night Henry requested Indian. While I went to Trader Joe's and bought some of those pouches, I decided to go all homemade except for the bread. Chicken in sauce, basmati rice and spicy chick peas. Pretty good and I felt so much better!

Now if I could just find cleaning soothing...

And so it goes.

Susan

My mom needed to see the surgeon yesterday. Because of her wound we decided to use a wheelchair van so I met my parents at the doc's office. I don't think she had quite gotten how bad her leg is. When he took off the bandages she got very upset. I couldn't look but my father did. I felt like I was going to throw up without even seeing it. He debreeded it some more and said it looked good but will take quite a while to heal. The wound vac (an electric drainage thingy) is doing its job but clearly she will need to be in some sort of facility until she doesn't need that anymore. The doc also said she might need a skin graft but her skin is so paper thin, it might not take.

Ugh. I haven't ever seen her this down after this and she was probably thinking she might lose her leg. It is a possibility if it gets infected. My father said she refused to go to PT yesterday. I don't blame her.

So after that I had quite a lot of phone calls with my father who kept saying how he doesn't think that Glen Meadows is a good idea because my mother my not ever return to independent living and that they might need to go into assisted living. He was backtracking but my special agent in charge of thinking clearly, Troy, suggested we find out if the deposit is refundable. It is! They have four months to put the final monies down and move in. So we are hedging our bets and at least have one option ahead of us.

I feel bad for my father. He is saying that he has really gone down hill in the last four months with all this both physically and mentally. I don't know what to say. I wanted to say ... Well, yeah, you are 88 and you fucking idiot if you had moved even a year ago we wouldn't be in this position. And if you hadn't gone out to my cousin's stupid party and did your pulling mom out of the car instead of helping her get up, she probably wouldn't have fell and gotten this wound. And, um, if you weren't such a bastard to me at times, I might offer for you to move in here again.

But no. Didn't say any of that. I did say that if god forbid my mother did die, he could still move there and get any assistance that he needs. He agreed.

I tell you this is soul-sucking. I do what I can and I know they appreciate it but for all my father's bluster about being such a good planner, this is not ... good planning.

Anyhoo, he did go and put down the deposit today at Glen Meadows. Yay! He called me right after and said his head is spinning. I'm sure. It took them five years to make a decision about selling the house and where to move to.

I did my pre-op stuff at Sinai this morning and then went to visit my mom. She was in rehab when I got there. She looked good and was in good spirits. She was walking with the walker.

In a way I am glad she will have to be there for a while so I won't have to worry about them two at the apt by themselves with no help.

I feel like I should be doing more like going over there and cleaning but I just don't have the energy. I really want to get my house clean and I can't seem to be able to even do that.

So today was a good day. My mom seemed better and my father finally made a decision.

Oh, I finally met their minister who has been visiting regularly and my mother likes a lot. She had said he is young. Um. hello. He is not ancient but I guess to her 60 is young. :)

A nurse came to ask me if the minister was still there and I said I saw him in another room and took her there but he had left. I figured what had happened and then later I heard her telling an aide that a woman had died and her husband was in the room and they were giving him privacy. Lovely. I guess it was for support because as far as I know Lutheran ministers don't give last rites.

And so it goes.

yay! got through the colonoscopy with flying colors. truth be told I was a little worried. you have like a 10% higher risk if you have endometrial cancer.

welp. not me! no polyps. see you in ten years they said.

I even have the picture to prove it. They give you a picture to prove they got all the way to your cecum - I will post it when I get a scanner ... promise. But here is something from Wikipedia for you.

From Wikipedia, the free encyclopedia

Cecum

The cecum or caecum (from the Latin caecus meaning blind) is a pouch connected to the ascending colon of the large intestine and the ileum. It is separated from the ileum by the ileocecal valve (ICV) or Bauhin's valve, and is considered to be the beginning of the large intestine. It is also separated from the colon by the cecocolic junction.

ANYHOO - No major probs with any of it.

Here is my list of things to know though ...

Buy charmin. I don't because I have environmentally stupid, low flow toilets and it stops them up but in this case ... stock up!

If you don't have a sweet tooth like me (I will take a chip over a cookie anyday) this is tough for you. Jello and pop sicles did not cut it for me. And I just couldn't even open the organic chicken broth. ick. What I did was do Miso and then strain it. It was so much better but I would have killed for food and now I don't even want it. What is up with that? Got me lots of residual gas. TMI?

If you are really sensitive to caffeine like I am, don't think drink a half gallon of lemonade ice tea like I did. I didn't even fall asleep last night watching Woody Allen's Matchpoint which pretty much deadly.

Have a good sense of humor. I have very deep veins (NO it is not fat). Always have. Giving blood is always a chore and they always go for the best phlebotomist after hitting my arm and tieing it up for quite a while. Just roll with it ... pun intended for those of you who have had a vein roll.

Accept the irony that while you are shaving your legs in the week hours, the doctor will soon only be interested in your anus.

Be nice to your housemate who is driving you eventhough he makes a pretty pungent breakfast for himself.

Be greatful that such technology exists.

And so it goes ...

Yesterday was a pretty big day. My father finally agreed to move into a CCRC. (continuing care life community a/k/a ... they keep you until you are ready to take a dirt nap.) yahoooooooo!

Glen Meadows in Glen Arm. I was cheaper (NOT cheap) than I thought. They will get a nice patio home and my father will get his god damned kitchen. I was really, really impressed with the place and the people. If he had actually made the decision six months ago we wouldn't be going through much of this shit even if she did fall. Oh well.

Then after that appt. we got my mother moved from St. Joes to Perring Parkway nursing home where she will get here leg cared for from the surgery and then rehab. Gotta love medicare and how they kick you out of the hospital so quickly. Still don't know if/when she will be able to walk good enough to go back to the apt. She might need to go into assisted living somewhere until they move.

Tentative date is October 1. They actually have 4 months from when they sign the papers which will be next week.

Not great timing since my surgery is the 30th and I won't be able to help them pack up the apt. for a while. My cousins have offered to help but I wouldn't wish that on anyone.

My poor mom has been in GBMC, Stella Maris (may be a law suit there but I can't think about it now), St. Joes and now the nursing home in the last month. She is really sick of it all but hanging in there.

My father has been relatively easy to deal with and when he starts ramping up I am able to say to him that I will not talk to him if he is yelling at me. I think I am finally growing up at 46!

Oh well, off to the GI doc in anticipation of my colonoscopy on Fri.

Roto Router thats the name. All your troubles down the drain ...

Today will be fun. First I am meeting my father at Glen Meadows, a CCRC ( continuing care retirement community a/k/a ... they take all your money but they promise to take care of you until you die.) Yesterday we were all set to put down a deposit at the Presbyterian Home of Towson. Until my father noted and then I confirmed that they don't participate in medicare. WTF?

So if you go into the what they call the health care center you have to private pay. To the tune of 6,700 a month! Who knows how long one or both of my parents might end up needing nursing home care. And the other one will be paying $6,000 a month! That is crazy. My parents paid in to medicare and have good insurance on top of that and deserve to use that.

After doing some thinking and talking to Troy, I decided this was too much of a risk. So I called Glen Meadows and the admissions director was really nice. Since they have had a deposit there for so long they are at the top of the list to get whatever is available. The entrance fee is considerably higher than the Presbyterian home but the rent is not and they do have a licensed nursing home that takes medicare.

Plus my father will get his god damn kitchen. Which actually I totally understand. They get one evening meal, can pay for more if they want but are able to do breakfast and lunch in their apt. They do have patio homes and that is what they really would like but then they have to go outside to get to the dining hall so as my father said ... he will just have to lower his standards and go into an apt. Yes, they are in apt now but they have a beloved balcony.

I felt better that they said they would accept her in a wheelchair which is a big change from when these CCRC's first started. I guess they realized that people are coming in older and in worse shape and needed to accommodate them. Also as long as my father is able to do the stuff like get her her medicine and stuff, they can be together. So that all sounds good.

It is still too bad that they didn't move sooner or that if my father wasn't such a bastard sometimes that they could move in here and we could just get help.

Anyhoo, I played hardball after he said we coudl go and look at the apartments. I told him that we are done looking and I need to know that you are willing to sign a contract tomorrow. He said yes.

On top of this my mother is getting discharged from St. Joe's today. I tried to get her in to the nursing home at Glen Meadows which would be ideal but since they are not under contract yet, they won't take her. Plus they aren't able to use the wound vac that they have in her leg draining and healing from the surgery.

So after Glen Meadows we have to move my mom to Perring Parkway nursing home. They won't give you an exact time because they have to wait until the surgeon signs the paperwork but once he does they they want you OUT! While my father as usual thinks we coudl do it ourselves, the social worker suggested a wheelchair van would be better because she wouldn't have to get in and out of a car. He agreed but feels we need to be there so she doesn't freak out like she did when she refused the surgery and the surgeon had to call my father from the operating room.

I called the social worker and said, no we can't do 4PM, get the wheelchair van for 5 because I need to get Glen Meadows straightened out and my father is just so slow about everything I don't want to have to go back tomorrow. Fuck them.

Speaking of nuts my father is really losing it too. He called me yesterday thinking that she was no longer on the wound vac and since she can lift her legs all of three inches in her lounge chair, we could get her home. WTF? Um, no. How is he going to get her in and out of bed? I said no and btw, she is still on the wound vac. They just take her off it for a couple of hours every day. Poor guy but he is really getting on my nerves with the stupid stuff he keeps saying.

Oh, and on top of that their food disposal broke and flooded the kitchen and he had to deal with that and found 6 pairs of my mothers dirty underwear hidden way in the back under the sink. Dementia just sucks.

Anyhoo, I don't know if I was fighting getting sick yesterday, (well I was, I felt pretty bad and took lots of echinecea) or just emotionally exhausted but I got little done and even took a nap which I never do. I feel lots better today so maybe that was good to build up my energy to deal with today.

My concern is that she will be discharged from the nursing home after rehab and then where will she go? I am thinking assisted living at Glen Meadows because by then we should have all the paperwork done.

But I am not going to be able to help my father pack up the house until at least August. My cousin called last night and she said she and her two sisters could help. God help them. But quite frankly my father has helped all of them out financially over the years so it would be good karma for them to help.

My father already was lamenting this morning about all the slides and photo albums that he needs to get rid of. I suggested getting just some of the slides of their trips made into pictures but then he said ... we already have hundreds of photo albums. So I give up. He just needs to vent and I need to realize eventhough I am a fixer, I can't fix everything. I just wish he didn't repeat himself so much. He always did but it is getting worse. He tells the story, and then tells it again, and then tells it again. ack.

I have two weeks before the Big C surgery and I really want to get my house in order which woudl make me feel better but I feel like I need to get over there and start. I don't know what to do.

Oh, and yeah, I guess I need to work at some point.

And so it goes ...

Don't know who actually reads this. My dear friend Mary said she does but I don't know who else.

Welp. I put it out there to the cosmos.

Took the kids swimming at the pool at my parents apartment complex today. A last hurrah. This was supposed to be our vacation but alas no funds to go anywhere. So I had planned to do daytrips but with my mom's issues I felt like I needed to stay close to home. They each went to a pool party, we saw Ratatouille yesterday (ugh, I don't know what the hype is, I thought it was boring) and then today we went swimming.

I wasn't going to swim but Henry put up a stink and said if I didn't, he wasn't going. So I quickly dry shaved and threw on a suit. I figured hell, I am fat and disgusting but life is short. It was fun.

Then my father called to say my mother had been on hold for surgery all day which meant no food and then finally at 5:30 they took her in and she refused the surgery! The surgeon called my father from the operating room and got them both on the phone and she agreed. Ugh. I ran over quickly this morning to see her and she started crying about how she just hates this and she doesn't know how much time she has left with her Henry. I couldn't help myself and I said .... hmph ... what about me? I did it in a way to get her to laugh.

It is so sad but we have been dealing with this for almost 4 months and it is getting old.

The surgeon told my father it will be a long recovery. I am hearing under that ... maybe never fully recovering to go home.

I think she has 90 days that her insurance will pay for a nursing home. As long as she qualifies for skilled nursing.

If that is the case, I will be able to help them figure things out one my surgery is over with. It is hard on my father going to a hospital/nursing home everyday. Maybe they will acquiesce and move in here with me. I don't know.

And so it goes ...

Yesterday we took my mother to see a surgeon as the cellulitis on her leg had turned into an open wound. The nurse practioner called me on Tuesday and said she thought we should see a plastic surgeon. We got an appt a week later. I didn't see the wound until Saturday because it had been wrapped. But she had just gotten a bath and they hadn't put the bandages back on.

OMG. I could hardly look at it.

I had a gut feeling that maybe we should take her to the emergency room last week and if it needed debreeding, it could be done before we had to wait for an office visit. I even call the NP back and suggested this and she said she thought it wasn't necessary.

Anyhoo. As luck would have it we had a terrible thunderstorm right when we were heading towards the hospital. My father has these goofy fans on the back windows that are supposed to be solar powered and remove hot air from the car. Something you would see late at night to buy on TV. So when he came in to get me at my house, my mother rolled down the window and screwed it up. So we were driving down York Road (I was driving. I refuse to be a passenger with him.) and I could barely see and should have pulled over it was raining so hard but there was nowhere to pull over. So my mother starts complaining she is getting wet because these stupid fan thing made the window not shut right after she had opened it. So my 88 year old father is in his chair backwards, no seat belt, trying to fix my mothers window and she has a rag over her face and I am trying not to kill us all. It was a very zen moment.

Well, we got there and my poor mother's back was killing her. We didn't think ahead and prophylactically get her pain meds. But we didn't have to wait that long. The surgeon looked at it for all of a few minutes and said it needed immediate attention and he wanted her admitted.

So now the skin is necrotic and he says the infection has gone down through the muscle. I asked if she would walk again and he said not for a while and I got the feeling maybe never. He said the hole will never fill in again. ick. And she will be on a machine for at least 3 days that is like a sponge cleaning it out or something.

I don't know who I am more mad at. Me for not being more proactive monitoring her care. Stella Maris for not. My father for allowing her to fall.

The only good thing in all of this latest fiasco is how impressed I was with St. Joseph hospital. AKA St. Joes.

After calling the hospital for the direct admit, the nurse walked us to the right elevator. I moved the car and by the time I got to admitting they were almost done and we sat down to wait for someone to take us to her room and she arrived immediately. By the time we got to her room there was already a fall precaution and warning not to take blood pressure or blood from her left arm because of the mastectomy. Then a nurse immediately came in and took her info and then someone was there to take her to radiology. I was home by 5:30! I hate, hate, hate GBMC.

So now I am going to retrieve her stuff from Stella Maris. I was going to talk to the doc or the NP but what is the point? Basically I want to say ... see you in court. When I packed up some additional clothes for her I put in a t-shirt that she must have gotten at a beach with metallic fish on it. Thought it would brighten her day. Well apparently it is missing from Stella Maris and my father keeps going on about how it was stolen. I finally said it is just a (fucking) t-shirt and he said no, it was a knit top and very fancy. OMG. This is the man who brought her a fancy dress when he brought clothes to the hospital when she was in for the first fall. My mother said that is the dress she wants to be buried in! I can't believe they have been married 60 years and he doesn't know the difference between church clothes and everyday clothes (now everyday hospital clothes).

Oh, oh. And he called me 8am Saturday morning after I had had a rare night out late. To ask how to wash her polyester pants because he didn't want to ruin them. ahhhhhhhhh. How can you ruin such an animal? Unless you want to melt them down for gasoline.

I just really, really need to get them stabilized and this newest wrinkle is NOT helping.

And so it goes ...

I don't know whether it is depression or the big C or what, but I just have no energy. I am not tired enough to nap. But when I try and do something it feels like a very big chore.

I think I need some joy in my life. Something to give my life meaning more than just getting through the day.

Next week I have the kids until Thursday night and then they are going on their annual vacation with Missy, Camille and Michel to Three Mile Island, NH. I am glad they are going because there is no money for vacation for me/us this summer.

They get back on the 21st and then Eli leaves for a week for Band Camp. He has never been to away camp. Never even been away from one of his parents for more than a sleepover. I already miss him. I can't imagine being away from him that much. Lordy, I am going to be a mess when he goes to college.

Oh well, boo hoo. Poor me. Buck up sister, buck up.

I guess I will try and continue making my office into a den/office instead of a monument to a failed business venture.

And so it goes ...

As usual, the middle class gets the shaft.

If you have money, you can pay to have your loved ones cared for in whatever kind of facility you want. If you are poor, you can go on Medicaid and hope to find a facility that has a few medicaid beds. If you are middle class and rely on Medicare and supplemental insurance, you are held to certain standards. There are things they won't pay for and everything is time limited.

Because my mom has developed cellulitis, she is no longer classified as getting rehab. She can't stand up. But she is getting skilled nursing because of the cellulitis. But the social worker called yesterday to give me a heads up that if they get the cellulitis cleared up and she still can't walk/get rehab, they will discharge her. Yikes.

Yes, you can private pay. $333 a day! And now I am not sure if she will even be eligible for assisted living. The place we are looking at ... The Presbyterian Home of Maryland ... has three levels of care below the nursing home ... Level 3 says you get lots of help but Troy seems to think if she can't transfer herself from bed to wheelchair, she won't qualify but I am not so sure. There seemed to be a number of people in wheelchairs who needed that kind of help.

I have a call in to them. Of course two months ago they had a suite but who knows how long the waiting list is now.

This is just crazy.

The other option that I discussed with my father last night is to get her into the apartment and hire help. Thing is getting her to doctors appointments would be impossible.

So maybe she will have to come here. Of course, I um, have my own issues to deal with.

And so it goes.