Life in hospice is going well. I can’t say enough about how nice the hospice nurses and other hospice workers are. The social worker has been a Godsend in helping Dude and in helping us tell the girls what’s going on.
Telling Cam and Teeny the truth, that I’m not going to get better, was the most heart breaking things I’ve ever had to do. It is NOT easy to tell your children that you are dying. Listening to them cry was one of the worst things I’ve ever heard. Not being able to fix it is the worst feeling in the world.
Dude and I decided to deliver the news to the girls last Saturday afternoon, a few hours before they had to go to church. Teeny has been consistently lighting a candle for me every week and she finds a lot of comfort in going to mass with Dude. Cam doesn’t complain about going nor does she get real excited. Dude and I thought they might find some extra comfort in going to church after talking to us earlier in the afternoon.
I’ve been too sick to go to mass for a while so Dude takes the girls by himself. He said that each girl was snuggled up as close and as tight to his side as they could be during mass. And of course, Teeny lit a candle as she always does. When she got home she told me that she still believes in the hope that I’m going to get better. God, how I wish that little ray of sunshine was right.
It’s not that I’ve given up hope but I’ve accepted my situation. I still take it day by day because I don’t know how I’m going to feel day by day. Take today for example. I might sleep all day long like I did on Tuesday OR I might feel fantastic and full of energy like I did on Friday. Every day is a crap shoot and I’ve just got to roll with it.
During the week the kids asked questions and spent more time “taking care” of me. In fact there were arguments over who was going to take care of me so I had to schedule their time out. They’ve also been busy cleaning and helping around the house.
My kids are strong but they have been dealing with cancer in their lives for five years. I hope the lessons they’ve learned and continue to learn make them stronger and don’t scar them. Although how do you tell an 8 and 11 year old there’s a lesson to be learned when their mom dies?
Well, I’ve got them surrounded by great people and a good support system that I hope pulls through for them. That’s how you do it.
Tagged as:
Cam,
Cancer Sucks,
hospice,
Teeny
After spilling everything that was inside my head twice this week, it’s safe to say that I’m kind of drained.
This weekend my girlfriend Nancy and I are going to finish the last wall in Teenie’s room. Yes, the poor kid has been living in a bedroom for the past few months with one wall unwallpapered. Not once has she complained.
Finally, the Hannah Montana bedroom will be complete.
Next project? Finishing the kitchen.
Tagged as:
Hannah Montana,
Teenie
Madness need not be all breakdown. It may also be break-through. ~R.D. Laing, The Politics of Experience
Yesterday I went to Reading Hospital to see my oncologist. Just a routine visit to see how my last round of chemotherapy went and to see how I’m doing. I’m extremely puffy from the steroids and I don’t even look like myself. Other than that, I’m very tired and still in pain. Next Thursday will be Round #3 of chemotherapy.
After my appointment I went out to the parking garage and got into my car. I put the key in the ignition and tried to start the car. The dashboard started to go crazy and I heard this terrible clicking noise but the car didn’t start. I yelled, “Oh fuck me!” hoping that would help and tried starting the car again. The dashboard did the same crazy thing and the car didn’t start.
I panicked. One of my worst fears is having my car break down and being stranded with no help. Here I was in a parking garage, broke down and stranded. It could have been worse. I could have been on the side of a road but at that moment it was no different.
I know, I’m very strange.
So, I called Dude in a panic, “DUDE! MY CAR WON’T START!!!! WHAT AM I GOING TO DO???”
He told me to calm down. “No problem, I’ll come and get you.”
We live about 15 minutes from the hospital, so I found a bench inside, near a window and watched for Dude to arrive. Thirty minutes later I was still waiting and I was pissed. I couldn’t understand what was taking so long! Forty minutes later, Dude finally showed up.
“WHAT TOOK YOU SO LONG???”, I snapped.
Well, Teenie was playing across the street, he had to shut his computer off and he decided to go buy some jumper cables.
I never told him to buy jumper cables so we started arguing in the parking garage. He was convinced my battery was dead. I was convinced it was something much more serious. After arguing for five minutes I gave him and let him try the jumper cables.
Dude gave me the motion to start my car and son of gun if it didn’t start right up.
Dude told me I should go get a new battery right away. I asked him to follow me over to the Honda dealer just in case I broke down on the way. We left the hospital’s parking garage and headed towards the Honda dealer except…
I wasn’t clear on which Honda dealer I was going to.
I just assumed Dude knew I was going to the Honda dealer in Reading because we were in Reading. It made sense, right? When we got on the highway Dude and I got separated. He says I “took off like a bat out of hell”. I say he drives like a little old lady.
I got to the dealer and realized that I had thrown my purse in Dude’s car. I kept my car running and waited about 10 minuted and there was no signs of Dude. Angry and pissed, I drove home.
I was home for about thirty minutes when the phone rang. It was Dude and he was at the Honda dealer…in Pottstown. Now he was angry and pissed. I tried really hard not to laugh. Why he thought I was going to drive that far is beyond me.
So now my Honda is sitting in the driveway, dead. This morning we started the argument about where to take it all over again. I’m ready to just shoot the damn thing and put it out of it’s misery…not Dude…the car.
Tagged as:
Breakdown,
Dude,
Honda
I’m home from the hospital. I was discharged yesterday but when I came home I slept to catch up on the sleep I lost while I was there. You know they have to wake you up every three hours to check your vitals. At least they were nice about it.
When I woke up yesterday morning I noticed that there was hair all over my pillow. Then I ran my finger through my very short hair and came out with a handful. It turns out that it decided to fall out while I was in the hospital. My hair had only started to grow back in but still it was a mess so one of the nurses volunteered to shave it all off. I told her about the video my sister and I made the first time I shaved my hair. I think she was kind of bummed out we couldn’t do the same thing.
The doctors never figured out what was wrong with me. They think it the swelling in my face might have something to do with the steroids I was taking prior to chemo and two days after chemo. It might possibly be a delayed reaction.
I’m happy to be out so I can go to the Bead Expo today. I was so afraid I wouldn’t be able to go. I know I should probably be resting today but the Bead Expo comes one time a year so I’m NOT missing it.
Thanks to all of you who send all your good vibes and good thoughts my way. I really appreciate it so very much!
Tagged as:
Bead Expo,
Hospital
Do unto others as you would have done unto to you. ~The Golden Rule.
As a blogger, this past week has been a nightmare. Over the years I’ve seen other people get dragged though the mud and raked over the coals and thanked God that it’s never happened to me. I’ve always prided myself on being nice and staying neutral whenever there has been a huge controversy over any sort of issue.
I’ve always acted here, the way I act offline with family and friends, with the people who really know me. As a blogger, I always tried my best to show respect to other people.
This past week I got it all wrong and I’m adult enough to admit it. I allowed my emotions to take over and break me down. In doing that I lost my ability to think rationally and act like a normal, sensible human being. As a result, it brought out a lot of ugliness in so many people. For that fact alone, I am ashamed.
First, I called out Jeremy Pepper publicly and unfairly. Although I’ve already apologized to him in a phone conversation and posted a public apology, it was still very unfair for me to call him out the way I did. What ensued after I wrote that post still bothers me so much that the post is now private. The post and the comments do not need to see the light of day. I don’t believe that anyone deserves that kind of treatment.
I also lumped in the BlogHer community into my anger in that post unnecessarily. BlogHer is what it is. I don’t want to be responsible for an attacks on a community that really didn’t do anything substantially wrong to me. Again, I allowed my misguided emotions and anger lash out at a group of people who didn’t deserve it.
My last apology goes to Jester of Jestertunes. I regularly read Jester’s blog and he is in fact in my feed of favorite blogs. When I read his post of annoyances I should have contacted him directly instead of reacting by writing a post in anger. Once I published the post I took it down five minutes later because I realized it was the wrong thing to do. I honestly never thought about the fact that it already went out to everyone’s feed reader.
The ugliness that ensued afterward was my worst blogging nightmare come true. Seeing the comments of some people who once supported me who and were now doubting me, rocked me to the core. Reading the comments of complete strangers who thought I was a pathetic, a bad parent, and faking cancer, did more than hurt me. It taught me some very valuable lessons. The most valuable lesson I learned is that karma is a bitch.
And just for the record, I have privately apologized to Jester for my part in what transpired this week.
I cannot change the things I have said or anything that has happened, however I accept full responsibility for the parts I played in it. I can only hope that if you contributed to any of the situations in a mean or ugly way that you can take responsibility for your actions as well. Even though this is the Internet all of us have to remember that behind the text lies a REAL person with REAL emotions, REAL feelings and a REAL life.
I think one of the the most important lessons I’ve taught my children as they have been growing up is the Golden Rule: Do unto others as you would have them do unto you. It appears as if I acted like a hypocrite with my actions. I’ve learned my lesson and learned it very well.
Cessation of work is not accompanied by cessation of expenses. ~Cato the Elder
~William Henry Beveridge
Yesterday I received a joyful piece of mail from the Unemployment Office. Those kind folks wanted to inform me they were refusing my claim, once again. Their refusal was based on facts provided by the Temp Agency…all false facts.
It infuriated me and it also infuriated Dude.
Last night when I told him about the letter he yelled, “THAT’S IT! Tomorrow we are driving up to that Temp Agency and getting THIS straightened out once and for all!”
He was frustrated because for five weeks he knows that I’ve been trying to get the agency to change what’s in their system because their payroll person keeps providing the Unemployment Office with the incorrect information. Like, I REFUSED WORK. Like, I WENT ON A JOB INTERVIEW. Like, I WON’T TAKE A JOB AS A CSR BECAUSE I PAID 8OK FOR A COLLEGE EDUCATION.
Get it straight…it was 90K.
None of those facts are true.
So, Dude and I drove to the Temp Agency and marched into the office. I requested to speak with the owner. Ten minutes later she appeared looking surprised to see me. She escorted Dude and I into a small interview room. We all sat down and I proceeded to give her the story…THE FACTS.
She said, “Are we going to court?”
I said, “No, not yet…”
She told me how her unemployment taxes are through the roof so they do every thing they can to deny claims. I told her I understood all about the unemployment taxes that she is accessed however there is right and there is wrong…and what her agency is doing is wrong. They are providing false facts to the Unemployment Office.
I made it clear that I cannot take a job that is stressful for 8 hours a day and that I offered to provide medical documentation. I assured her medical documentation will be provided to the Unemployment Office stating that fact.
We had a lengthy conversation and she was very nice about the entire situation. I could tell that she does NOT want to spend a day in Unemployment court as well. She promised to investigate what happened in her office and personally look for an assignment for me.
I thanked her and informed her that I’m sending a big ole’ APPEAL to the Unemployment Office. She asked if we would be going to court AFTER that. I wanted so much to say, “Most likely sweetie, most likely.”
As Dude and I walked out of the office and out to the parking lot I said, “THAT WAS AWESOME! You totally had my back!” because he threw his 99 cents in as well. I’m telling you we were like the Dynamic Duo. My Dude, who is normally shy and quiet spoke up and threw in his constructive criticism about the situation AND stood in as my witness.
I totally think I love him more than ever now.
Today I’ll be working on my APPEAL so I can send it certified mail. Mediation…here we come. Thank GOD I have a witness for some of the really STUPID things the owner of that Temp Agency said. Woo Hoo!
I swear if I don’t win this time then they system is totally corrupt.
Kudos to Dude!
The goal of all life is death. ~Sigmund Freud
Yesterday I had lunch with Sister D and we discussed the fact that I may not be here to see my children graduate from high school or get married. It’s realistic, not morbid.
I asked her if we could stop by the book store after lunch so that I could purchase two blank journals for Cam and Teenie. I’m committed to writing an entry everyday to each of them until the end of my life be it next month, next year, 10 years, 20 years or 30 years from now. I just know that I don’t want to leave this life without a tangible part of me to give to them. I NEVER want them to doubt that I loved them.
Sister D also promised me that no matter what she would always be there for Cam and Teenie. She better be because I can probably haunt her from my next life.
We continued talking about death on the way home and I asked her if she thought it was wrong if I burned CD’s of the music I want played at my wake. Of course Sister D had to first explain to me what a wake is and asked me if indeed a wake is what I would want. She agreed that it would be fine to plan the music. Any requests?
All I know is that when I leave this life…and I hope that isn’t for some time to come…I want people to celebrate my life. I want my family and friends to get drunk and talk about all the good times we had together. I want them to reminisce about all the stupid and hilarious antics I’ve pulled in this lifetime because I’m sure there isn’t one person I know who doesn’t have a story.
I also hope there will be a few people who will remember some of the good things I’ve done as well because God knows I tried.
Anyway, one of the best parts about our conversation was about urn choices because I’ve been saying for 20 years that I DO NOT want to be buried in a casket, however I do want to be cremated. I asked Sister D if she thought it was appropriate to pick out an urn prior to passing away.
See, I love Dude dearly but I just fear that he might pick out something, how do I put this, tacky? Not that I don’t think he has good taste or that he doesn’t know me very well but if I pass away before he does he will probably be pretty sad and having to make that choice at that time might be, well, stressful and well, making a decision like the right urn choice may not be his forte at that time.
So Sister D and I discussed what type of urn would be best for my ashes and determined that one in the shape of a gnome would be perfect being that I collect gnomes. Can you imagine a gnome urn? Somebody somewhere has to make one. I challenge you to find it because I have yet to look.
Look, I’m having open conversations about death and dying because it’s going to happen to all of us. I just happen to be a control freak and in being a control freak I want things to be a certain way. I’d like lots of The Rolling Stones played at my wake and if we could find a Stones tongue pinata then that would be way cool. I think that if I want my ashes in a gnome urn they should be in a gnome urn. If I want my urn to ride in the 4th of July Parade just one last time before my ashes are spread then dammit get me in the parade!
I’m sorry if I seem so morbid it’s just that I want those around me to know what my wishes are. Have no doubt that this will all be written in a Word document, burned on Dude’s “Idiot List” flash drive I’ve made for him and backed up on a CD-ROM. Now that has CONTROL FREAK written all over it!
God made so many different kinds of people. Why would he allow only one way to serve him? ~Martin Buber
For the past few days I’ve found myself a bit introspective, a bit sad and maybe even depressed. Although yesterday I had a Mexican lunch with my friend Dave…which rocked! I hate to admit when I’m struggling but it is what it is. Before you even ask or suggest it, yes, I’m talking to someone professionally because geez, how the hell do you face something on this scale without professional help?
I’ve even thought of seeking spiritual guidance however finding it at church just isn’t the way to go for me. My religious background is worse than a mixed breed mutt that you’d find at the local humane society. I was baptized in the Catholic Church and often went to the Catholic Church with my nana, my great-grandmother, as a young child. Sometimes I went to the Methodist Church with my father’s mother and got a dose of what the Protestants were dishing out.
My parents divorced by the time I was about five and both remarried. My mother converted to Judaism and started sending me to Hebrew school. That’s when I started attending services at the Temple with my step-grandmother every Saturday. I have fond memories of her Jewish apple cake, gefilte fish and challah bread with cream cheese. There were many weekends when I went to Temple on Saturday and the Methodist Church on Sunday. I didn’t know if I was coming or going. I didn’t know if Jesus was in or if Jesus was out.
Needless to say at age six and seven I found it very confusing to read a bible in one direction on a Saturday and then read it the opposite direction on a Sunday. Just one more reason for calling this blog Clusterfook.
I remember receiving my first Torah and how I coveted it’s scrolls and gold covering. I loved the Temple and all the Jewish holidays. I always thought it was cool how I got to take days off from school for Yom Kippur and Rosh Hashanah early in the school year while the rest of the kids had to go to school. Back then I was the only “Jewish” kid. I loved the ceremonious celebration that went with each holiday as well.
Things got confusing though because we also celebrated the Christian holidays in our house. My mother loved Christmas and I guess she didn’t want to deny me the Christmas tree or the presents so we always had a tree in the living room…which was across the room from the Menorah. I know I received a fuckton of presents.
The same thing with Easter. I always had an Easter basket and it seemed as if Easter and Passover were forever crossing with each other causing total conflict. I’d spend the week with my mother and step-father listening to the kosher rules of no HAM, PORK, BACON or HOT DOGS. Then I’d go spend Easter weekend with my dad and step-mother…who would serve a fat ass ham.
It’s no wonder I needed years of therapy.
Now here I am as an adult with no religion but I have a lot of faith in a higher power. And I have children with no structured religion. I have one child with a very Catholic name who has a strong desire to go to the Catholic Church and be baptized. Teenie is only eight but she’s adamant about being baptized…in the Catholic Church.
Her grandmother, Dude’s mother, used to take her to church almost every Saturday evening…Saturday mass at the Catholic Church. So, those are Teenie’s memories of her grandmother and her impression of church just like my childhood memories of the Temple. I’m most comfortable in the Temple because of my childhood memories so why wouldn’t Teenie be most comfortable in the Catholic Church?
For once in my life I have to set aside what I know and what I believe. I have to put myself in Teenie’s shoes and do the right thing and I have to do it now. Like yesterday. After I post this I need to call the church and find out exactly what we need to do to get that child baptized IMMEDIATELY based on my circumstances. If they have to call the Pope to break some rules…then call the Pope.
Oh come on, you know it’s so like me to demand that they call the Pope…and I’ll rally you to call him too if we can’t get this child baptized.
