Saturday, July 27, 2013

Observations from the front lines @ the Cancer Treatment Center.

So, yesterday the Chicago area pretended it was May weather (and it was 65 degrees and raining on the way to the Hospital). As a matter of fact, it rained the rest of the day while remaining cool. It reminded us of the day we first went to CTCA in May.

Penny went through her last chemo treatment this morning and we received the date of the Cystoscopy.... September 9th (6 weeks from now). So we will most likely be spending our 22nd wedding anniversary weekend at the Hospital (our anniversary is on 9/11). So we will be getting the trailer ready to take to Illinois Beach on September 8th (we don't know what the cystoscopy results will be.... if another tumor is found, if it has spread, or if she is cancer free). The trailer will be there for me in case of additional surgery that requires her to recover over multiple days and I need an inexpensive place to stay ($25 a day) or it will be there for us to celebrate both good news and our anniversary with some downtime at Illinois Beach (camping).

She is pretty tired lately due to the chemo and is starting to realize her limitations as a result of her treatment (and we have talked lately of just how far things have to go before she decides her quality of life is more important than continuing to put poison into her body or risking major surgery). She knows what that means also, but to put perspective on that... she has survived multiple hospitalizations and a shooting (and believes she has been living on borrowed time for a while). The possibility of a neo-bladder or other major surgery has her spooked (rightfully so) because her immune system has not been that kind to her during previous surgeries. After our experience with my mother and her battle with Pancreatic Cancer over 3 years ago plus interacting with other patients at CTCA, we are much more aware of "quality of life". 4 years ago before our experience with my mother, I would have pushed Penny to use every means possible to live another day to the point of argument.

Now? I just want her to be as comfortable and happy as she can possibly be at all times (and I will support any decision she makes as it is her life that is being lived... not mine). Sometimes the lines get blurred when trying to support one's loved one and you can see it playing out in real life when interacting with other cancer patients at CTCA (so instead of my forcing my opinion on her, we only discuss the options and we discuss them in detail). Her decision is then what we go with (and I support her 100% regarding that decision). It is what I hope she would do for me if the situation was that I had the cancer (and I know she'd afford me the same latitude given our mutual experiences).

Every time we go to CTCA, we see so many life stories unfolding In front of us (many people at different aspects of their journey). For instance: We drive up to CTCA and the first thing we see are some patients and/or caregivers going for a smoke on the front sidewalk. We are blown away by that, because when they come into the Hospital, they usually reek of that smoke (which offends and affects people close by.... especially on elevators or other close quarters). The fact that it either doesn't dawn on them or they don't care shows the deep affect of addiction (to Cigarettes in this case).... and why we see so many people walking around with masks on (who are either can be affected by the environment due to weakened immune systems or they cannot handle the overpowering smells around them).

One sees how people are especially in the cafeteria (you see who is hungry, who isn't, who needs help, who tries to be independent, etc. Some wear masks, wigs, bandannas, or are shaved/bald. We don't see people as African-American, Caucasian, Asian, etc., we see people who are trying to hang on to whatever life they have left (wanting to be treated as a person and with dignity). Each one of these people are there trying to extend their lives (and are at different stages of that).... and there are some that are at the end of their tether (trying despite evidence to the contrary to cling to the hope they have a chance). Penny is not anywhere near that, but considering everything she has endured until now regarding all of her medical issues to date.... she is much more realistic about her situation (and she is about the most brave person I know). 

On September 9th, we'll know where things are at medically. We are praying we got ahead of the cancer and that the chemo did the job and that all of this will be moot in the long run (and she will count herself as a cancer survivor with cancer in remission). Penny is due for some good news and we pray that she gets it.

Thursday, July 25, 2013

Chemo: The hair, anything but.. the hair.....

=(

No AT&T this morning either, so I left around 10:45 am to help a friend. Just before I left, Penny remarked to me that she is definitely losing hair now (and if there is one thing "Lotsa Hair" doesn't want to lose... even tho she knows it may happen, it's losing her hair). =(

It is thinning and we hope that is as far as it goes. otherwise, we have a church friend who can weave / make a Human Hair wig if Penny decides to go that route. As tomorrow is the last chemo treatment before the next cystoscopy, we are hoping that it will stop once the chemo ends. I've told her I love her no matter if there is hair or not (and I'll even get my head buzz cut to match her), we'll just have to wait and see.


I took the Sebring to get the standard tire air check done at Discount tire later this morning (the entire drive was top down as the weather is incredible.... especially for late July). I then went to help a church friend (Brigitte) with her PC's access  (consistent AT&T dsl problems). 15 minutes after repairing that, I went 2 doors away to help her 89 year old neighbor who is pretty ill and who is trying to maintain her independence (she was having issues with using her email / facebook / bank website /etc). I spent the next 2 hours automating picture upload when she connects a camera, writing down all of her online account ID's and Passwords (I had to go through multiple notepads of jotted down notes to find them), and then set up 5 tabs within Internet Explorer that leads to all 5 of her important websites. She is now fully automated. The hard part is that she would not let me leave without giving me $30.00 (after 10 minutes of her asking me to accept it, I relented). I look at occasional help as paying it forward (especially given all of the help Penny and I have received this far), and when dealing with people with a fixed income, I am not there to profit from their inability to use a computer. Alas......... 

Being that I parked the car in our friend's driveway, it was almost like pulling into a bush/ivy//tree tunnel (it has grown over her driveway in an arch like manner - I felt like I was in a German Garden).

Being the idiot that I am, I left the top down (failing to remember what sits in trees/bushes in my haste to help and then leave to get done what I had planned for the rest of the day) and when I got out 2 1/2 hours later........ D'OH!!!!
<ImageImage>

I went to the $3.00 car wash for an extensive bath, and got home (after AT&T had already been to my house to repair the line from the pole to my house and they put it in the same place as it was previously where it can smack into the side during a storm).
 
So, speaking of storms...... later this afternoon, 2 gentlemen from "Eco Shield Home Design of Roselle stopped by the house to let us know they were willing to inspect our home for weather related damage such as hail. Ahhh, grifters sez I. And then they break out their credentials. I decided to hear them out. Considering our home's roof is only 10 years old and the shingles are disintegrating on the west side of the roof and the aluminum siding has a quantity of sizable dents that are obviously from hail.... and upon lookup, they have a good BBB rating and Angie's List rating, we decided to allow a free inspection and for them to work with our Insurance Company.
 
Now....... I have to go out and finish the brakes on the minivan (the right rotor I never got to a few days ago, and I need to finish it before we go to CTCA tomorrow for Penny's final chemo treatment).
 
Another day in Paradise. =) 
 
It may be 10 years old and have 185,000 miles plus have some minor rust and a leaking valve cover gasket, but she is still "purty". =)

The Hurry up and wait experience.....

So, yesterday......

I walked outside to a beautiful day (absolutely, drop dead gorgeous blue sky and 70 degrees).



I had the day mapped out to get a lot done and then I see it. A wire from the power/telephone pole is draped in between Penny's and my car.

Oy.

So I walk over and it is still attached to the AT&T box on the side of the house, but it came off a insulating ceramic connection that was above it (keeping the wire at the 2nd story level). Oh, and my Internet is still up.

So I gingerly moved the cars away from the wire by driving on the lawn to get around it, and then call AT&T repair. Folks, this is no longer your "Ma bell"... 45 minutes spent going through prompts and different departments to finally get to "Repair". I indicate to them it is draped down from the pole and it impeding both the front of the driveway and is a hazard to people who use the sidewalk in front of our house (since the park is a block from us, many young people) walk the sidewalk in front of us and you can be sure there will be someone who either won't be paying attention while their ipod/iphone is blasting in the ears and will walk into it or someone else will play with the wire causing more issues and possibly causing harm to themselves / our wire. They prioritized it and indicated that it is at the front of the line since it can cause an issue to the public. So, I got the driveway cleared so they would have access to the area needing repair. And I waited..... and I waited.....

In the interim, we had appointments (at Illinois DHS) for an interview over our financial situation. Travis and I left for Woodstock at 1:30 pm, and of course, came upon an accident 3/4's of the way (forcing us to be late as the police blocked movement on both sides of the road until the wrecker cleared the vehicles from harms way). I got the call from DHS wanting to interview us, and I indicated I was 7 minutes away and I asked for her patience. Nope, it has to be now otherwise she will get behind (mind you, the 6 binders of information I was armed with in my back seat had all of her answers). So I said Ok and pulled off the side of the road and went though the Interview over a 30 minute time period (and since I am in the Convertible, we are exposed to the noises of the extensive truck traffic... a formation of planes flew overhead during the call, and a McHenry County Sheriff stopped to check on us since we were on the side of the road and I had to explain I was on the phone with the State of Illinois and pulled over so I could concentrate on the call and not be a hazard to other drivers)....... OY!!!! The thing is, my documentation was filled out and she would have finished the Interview in 10 minutes if she had waited for me and would have exact information to boot (versus some guesses as to exact dollar amounts). She told me when I drop off the paperwork, I can make copies of specific items when I get there (that the front receptionist will help).

So when the call was done, we take off and do exactly that. Only, the receptionist will only make copies if I hand over the documents a few documents at a time (even though business is slow and there are only 2 people waiting in the waiting area). Ugh......

So we dropped off what I had already made copies of (I had spent 3 hours collating the paperwork to ensure we had everything and ran out of time to provide make copies of everything as I thought we would have the opportunity to finish doing so at DHS) and I have to go back there with them. One would think that if they were trying to help those in need (especially the unemployed or single parents who don't have access to copiers without paying 10 cents a page), that they would have a specific machine dedicated to that purpose in the waiting room. That would eliminate a lot of frustration regarding the paperwork that DHS requires.

Travis and I then went to the Social Security Office to start work on his Disability Claim. And we find out that on Wednesday's, it is only open from 9 am to noon (????????????). Really?

So, licking our wounds..... we went to Tommy's to grab a bite to eat (the $5 pasta special) since we were out for so long and he had forgotten to eat earlier in the day.

We got home, and the wire was still in the same place (AT&T had not been by). I had to stop in front of our house (we had to be careful pulling into the driveway) and I was waving the person sitting behind us around us. He sits there... and sits there (at least 25 seconds). He finally pulls up beside me yelling at me "why I was blocking the road?". I point to the wire in the driveway and mention "don't you see that wire in the driveway and didn't you see me waving you to go around me"? Now just to picture this, we are in the old convertible with the top down, and there is no way he cannot see me waving him on. Oy.

I then cut the lawn (with the trusty ol' 25 yr old Montgomery Ward riding mower) and Travis moved the swings and obstacles (and emptied the grass clippings). We got that done, and we started to work on the rear deck (replacing the 4 year old rope light on the rear gazebo that sits on our rear deck). We got that done, and then started to put up the replacement canvas canopy on the gazebo. 15 minutes later, we are taking the canopy down as even though the box stated 10x10, it is actually 11x11 (they had to wrong replacement canopy in the box). Oy. While we are doing this, Travis and I are stung by wasps that are now streaming out of our deck bench. Our dog Maggie was stung in the nose, I got 3 in the leg, and Travis was stung twice (in the leg and right hand).

"There's the sign". Time to wrap things up, and nurse our wounds. So we went to take the Replacement Canopy back to Target, got the refund (not bad considering we got the canopy in the spring and it was past 90 days since purchase). When we got back, I carefully cleared off the deck bench and used a broom to open the bench. Aye Carumba, there are 2 HUGE nests in the bench (one was particularly large and "juicy"). I took the wasp and hornet spray and doused both nests. So the pests are now pushing up daisy's and we called it a day.

Still no AT&T, so I gingerly put both of our vehicles back in the driveway (we can't leave cars in the street overnight, as Huntley Police will ticket residents who do so).

It is now the next morning, and still no AT&T.

I called them and the ticket was on hold. I professionally urged them on (using the right words such as "danger to public and our son") and we are now waiting for them to arrive (we are allegedly next on their dispatch list).

Please note, the above are not "complaints" per se, they are observational so one can see what seems to be our average day (things could be a lot worse, like living in Kenya and starving so we do have perspective, it's just the irritating things that wear people down).

Another wonderful day in paradise (praise be to God). :-)

Tuesday, July 23, 2013

Well, things are now calming down.

We've had an influx of positive comments and support from people since last Friday plus a LOT of advice (when it seemed the world was against us). Apparently, people from our past has deigned themselves as judge, jury, and executioner of how we live our lives. We 've been attacked by these people time and time again (and it appears they have nothing better to do than to continue to try to make life miserable for us). It matters not to that person that even if what they allege was true (which it isn't), that it isn't for them to anonymously attempt to affect people they have nothing to do with (especially when they are not allowed in our lives by our choice after our last clash with them). They faded into the "sulfur" just waiting to attack again (and a family squabble opened Pandora's box for them to try again). They have failed.

Their mistake was to attack Penny directly regarding her disability by claiming she wasn't (while throwing us both under the bus for multiple reasons). And they she derided our effort at survival by questioning our efforts at fundraising by claiming we were not using those funds for the intent it was there for, they questioned the sanity of the church members - family - and friends we share our lives with, and has pursued with vigor the attempted dismantling of our family..... yet again.

We've only met evil four times in our lives: the man who shot Penny and 16 others in 2001..... the governor who politicized capital punishment and used the "Death Penalty" as his political foil in which to salvage his political legacy..... the men who harmed our daughter.... and the woman who uses people to harm others who apparently made it her mission to ensure we are not involved in our children's lives and makes it her mission for us to always look over our shoulder. Some people think they can play with us using the anonymity of the Internet to attempt to strike fear in our hearts. They are wrong, as this has only tightened up the friendships / relationships we already have with so many people. We are already such an open book, that it is hard to keep anything from our friends (and our financial lives????? a proctologist couldn't have gotten any more info from us than was already shared with everyone we interacted with). We've sold off all of our assets (including our beloved 'Class A" RV, my 401k, ESOP shares) to keep afloat (it hasn't been just the Fundraiser). We've sacrificed everything, scratched and clawed to make the numbers work, went through hospitalizations and treatments that introduce poison into Penny's body to fight cancer, and I creatively horse-trade using my Information technology / negotiation skills to barter for items. We receive no food stamps, we receive no Social Security despite the evidence that Penny and Travis are most certainly limited due to their functional condition, and the only benefits we are receiving (Illinois Hardest Hit) has been through a THOUROUGH financial vetting via the State of Illinois (including providing all of our bank statements showing every Penny we have).

This is just the "enemy" using his usual "Angel of Chaos" to try to cause chaos in lives while we were down due to adversity we were going through. Our son Travis, certainly didn't appreciate it and ultimately he is the unfortunate victim of this person's actions as it only makes it harder on him to know whom to trust in this world (especially when a person he doesn't interact with is trying to sabotage his parents lives). We pray to God that this person will finally let us go and live our lives (and if she desires anarchy, to keep it amongst herself). We will have none of it, and ultimately.... we will be the better for it. God has a plan for all of us, we only pray that those affected by her by no fault of their own (as they are in proximity of her) will not be harmed in any way and will receive the blessings of God's protection. We will be working with the elders of the church to ensure they are aware of the chaos enveloping us, and this too shall eventually pass.

In the end, we may not be perfect.... we may sin daily..... but we would not harm another human being (even though it has been tried upon us so many times). We have managed to keep a roof over our head, feed ourselves, maintain our medical coverage, retain all utilities, take care of our son who lives with us (through no fault of his own and his disability prevents his going solo), reduce our costs down to the bone, and maintain friendships / relationships with friends, family and church members while putting up boundaries towards negativity that try to affect our lives.

We are concentrating on Penny's continued care (at last count, the medical bills went past $42,000.00 since April - which is considered "out of network") and much of that has been covered by the Cobra Insurance that we continue to pay, and we meet with the financial counselor at CTCA this Friday to go over everything, and also on my hunt for a viable job that keeps me close to home to be there for Penny and Travis (especially due to the fact I worked so far away for most of our time together the past 24 years). It is not too much to ask for evil people to just leave us alone, but the "enemy" is relentless. We have made it this far (to the point of surviving Penny's shooting and her being on Life support). We shall overcome all obstacles with God's help and blessings.

Hopefully, no more posts will be needed to be posted about this. We felt it important to address head on as Cancer patients still live their day to day lives while life goes on around them, and ignoring life doesn't make it go away (and in some cases, the Jerry Springer Show cascades into one's home time and time again despite our best efforts to avoid it.

Bringing said evil to the light of day is the approach we took, so others may learn how to fight such issues in the future when faced with such adversity. We are giving it to God, but we are doing so in such a way that Evil will not get away with it should our armor be pierced. They too have to atone for their actions, and in time..... we pray they find peace in their life so the rest of us can have peace also.

A couple of scriptures come to mind:

“Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account".  - Matthew 5:11 ESV

"And I heard a loud voice saying in heaven, Now is come salvation, and strength, and the kingdom of our God, and the power of his Christ: for the accuser of our brethren is cast down, which accused them before our God day and night." - Revelation 12:10 KJV


Sunday, July 21, 2013

Church and a day of bonding with others. =)

We went to church today and got some old fashioned religion (very needed after the past couple of days). After that, Penny went to Woodstock with her friend Lydia to see the following group in the town square at the Gazebo. Here is an example of their music: Brother Sun + Their cover of "In the name of love" + Lady of the Harbor. Their website is at: http://brothersunmusic.com

Lydia and Penny met the band members afterward (and she went and bought a CD for herself and for Penny). The band even signed the CD jacket. :-) The CD is "Brother Sun" and we now have another song that Penny thinks is our new "our song" (Track 11 - "All I want is a garden"). I listened to it a few minutes ago and I love it ( http://brothersunmusic.com/audio/All_I_Want_Is_a_Garden_clip_0-69_lofi.m3u ).
 


So while Penny was bonding with our friend, Travis and I went to see the movie "Pacific Rim" this afternoon. We went to the Classic Cinema 12 in Carpentersville (since we don't mind the older theatre seating and the price is right at $5.00 each for a first run movie). Travis knows we are trying to save money, so we ate first at home before going to see the movie. It was a good time to have a "Men's afternoon out". We enjoyed the movie and came back home and enjoyed the evening with Penny watching the movie "Mercury Rising" on the Bounce TV channel.

Tomorrow, we will be making every effort to get past the latest "drama" caused by the "Family Friend" the past 2 days... as there will be repercussions. It is a shame really, as Penny took this person into confidence many years ago and that person choses to use the Internet and these blogs to try to create strife within a family (not Christian-like behavior in any way shape or form).


After that, we hope that most of the negativity in our lives will diminish while we concentrate on Penny's health and my effort to find employment.

In the interim, if there are any questions or concerns (that anyone who knows us might have about our posts) or if you want to make any general comments / observations..... please, do write in our comment section (each blog post allows for comments). No question or comment is unwelcome, we only ask that respect be shown given this is a Public Blog.

Penny's last chemo treatment is this Friday, and then it is the 4 to 6 week wait for the next Cystoscopy (the roller coaster continues).