Friday, May 31, 2013

Cystoscopy completed. 2 more tumors found / removed. :-(

    <Penny ~ right before Surgery this morning>


the good news is that Penny is out if surgery (as of 9:30 am). The not so good news, 2 more tumors were removed (along with the stent) at the left ureter. We will know the pathology by next Wednesday (multiple biopsies were done regarding tissue in her bladder). The fact that 2 grew in less than 3 months confirms (in my mind) that the diagnosis of the cancer being "High Grade" is spot on. We will be deciding her future treatment next week, and all options are now on the table (it's just a matter of what is recommended and what Penny wants to do).

She is in recovery and is staying in the hospital through tomorrow. Once she is released, we will be going home until next Wed or Friday (when we'll meet with the urologist and the oncologist).

She is in a lot of pain tonight and so I went home so as to not irritate her migraine (her request). I am hoping she recovers a lot better than she has in the past after such procedures <knock on wood>.

<Penny ~ this afternoon after Surgery>

Thursday, May 30, 2013

A lazy day today (Tomorrow is the big day ~ Cystoscopy at 7:30 am)

Today was a free day for Penny and I to be husband and wife (in other words, she wanted to see Gurnee Mills). So, we went to the hospital for breakfast, then went to Gurnee Mills (and she got 1 bag at "Shoppers World" for $15.99 and another 5 bags of the same price for free.... essentially 6 handbags for $15.99). "Score" said she..... :-) We did a lot of window shopping (as after all, I am unemployed at the moment). I just figured she needed an opportunity to just "be normal" after being around so many people with Cancer this past week. After that, we went back to the hospital (NY Strip Steak plus roasted red potatoes for $1.15 each).... the one thing for sure, we weren't going to miss that (and the meal was incredible for Hospital food). We then went back to the hotel so she could rest and go to bed early as tomorrow will be a VERY early day.

Regarding surgery tomorrow, we'll be at the hospital @ 5:45 am for pre-op. The Cystoscopy should take about 90 to 180 minutes. They will be determining if the stent area in the left side of the bladder is inflamed (by the left ureter), and that stent will most likely be removed. If any tumors, they will be removed. They will be also be taking multiple samples from other parts of her bladder and sending them to pathology as well (to determine if there are any rogue cells). If her bladder can handle it and it is needed to prevent blocking, they will add a new stent.

By 9:30 am, we should now if her bladder is clear or if there has been additional cancer (and how much), we are praying for a clear of tumor bladder and that her blood in the urine is from an infection only.

I am praying that worst case scenario isn't there (where the cancer has spread and the surgery becomes something more significant, such as bladder removal (and the making of a new bladder out of intestine). I will update everyone by 10:00 am (by facebook on Penny's FB wall).

A lot of praying will be going on tonight. We'd appreciate as much from all whom we know and hold dear......


Pageviews from Russia, Germany, & Norway in the first week of this Blog being up? Wow. :-)

The tools that come with are pretty robust (for a free web solution). Seeing from where people redirect from to come to our Blog plus where they are in the world is quite interesting.

We are up to 250 Page views and I am hoping that this will increase once others start interacting with us. The fact that the world can interact with us is incredible and most humbling.

Travis has essentially been a trooper keeping the house and the dogs in order while we get his mother's medical situation stabilized, we are so proud of the young lad.... it can't be measured.

If anyone stumbles across our Blog, please chime in and let us know who you are (and if you are another cancer survivor or are facing cancer for the first time..... we hope you learn something from our experiences). :-)

Today is supposed to be storming in our little corner of the world. Tomorrow's Cystoscopy awaits Penny, and soon we will have more answers to our questions (and we can plan out the next 6 months of our lives). It may be storming, but the future is so bright now.... we gotta wear shades.

Many blessings to one and all ~ Steinar

Wednesday, May 29, 2013

A beautiful moment in time ~ A day at Illinois Beach State Park

After we were done with our last appointment with a doctor @ Cancer Treatment Center of America (in Zion), we went to Illinois Beach State Park to see their facilities. Given the cost to stay there daily is $25.00 a day (and the subsidized Hotel rate from CTCOA is $40.00 a day), we are looking at the possibility of taking our travel trailer here when Penny is @ CTCOA for many days regarding treatment for her Bladder Cancer.

This turned into a wonderful outing for Penny and I (we enjoyed the waves, the tree we were sitting under next to the beach, the sun, the bird life, and the lack of boats on the water). Stunningly, just 2 miles north around the bend, is the Nuclear Power plant in Zion that is being decommissioned..... so it is a surreal experience.
The RV spaces look wonderful (especially spaces 315 and 317 which have a short 100 yard trail to the actual beach), so when Penny's Cystoscopy is done and things settle down, we may spend 2 days here next week if it is possible. The experience really perked Penny up, and I can't tell you how much that made my week. :-)

Cancer Treatment Centers of America ~ Bladder Cancer journey

We've been here for a week and things are starting to get serious (we are going through the evaluation process and they are now getting an idea of what we've been facing).
After our initial discussion with our oncologist, it's official. We are looking at the possibility of a Cystectomy now officially being on the table as a treatment option (depending on the results of the Cystoscopy this Friday).
CTCOA took a look at the 4 Pathology reports provided by Sherman Hospital and did their own review of the specimens also. 3 of their 5 Pathologists reviewed them as they believed that the lab that Sherman Hospital used possibly does not a strong enough staining process (as they believe Penny's specimen's indicated papillary urothelial carcinoma - high grade) whereas Sherman's Pathologist determined papillary urothelial carcinomas - low grade. This difference is huge when it comes to treatment decisions. So Penny's Cystoscopy on Friday takes on a more important role in the planning of her treatment from this point on. They will be taking multiple tissue samples and will be testing them. Depending on the results, we will know if we continue with the every 3 month Cystoscopy and BCG treatment every 6 months... or we are looking at a "Neo Bladder" procedure (which is a very difficult surgery). Tomorrow is the consult with the Pulmonary specialist..... Thursday is a day to rest right before the Cystoscopy on Friday. We will need many prayers that Penny does not have an adverse reaction after this procedure.
A long week ahead folks......

Monday, May 27, 2013

Memorial Day 2013

I might have been born Norwegian, but I am now 100% American (and have served this country for 7 years and having become a Citizen legally). In our house, we celebrate American holidays (and we display the American flag for all to see).

To my fellow Vets, we salute you.

To the fallen, we honor you.

To those who don't share such a sentiment, we pray for you and thank God our country is the light of freedom in the world (where people who don't agree can still enjoy the freedoms that is the result of the sacrifice of so many).


Sunday, May 26, 2013

State of Illinois - the frustrations of dealing with agencies (while walking on thin ice for fear of offending the worker handling one's case).

So, to celebrate this Memorial Day, we got to enjoy opening up a letter yesterday from the State of Illinois (Vetcare) telling me I am denied Vetcare benefits because I did not submit my wife's disability check stub and my DD214 to them by 4/30/2013. Mind you, it was given to the local Elgin, Illinois VSO (Veterans Services Officer), who forwarded it to the State's Field Service Manager, who forwarded it to the Vetcare office in the 3rd week in April. So in the interim, I have officially had my file lost by the Woodstock VSO last November, who didn't respond to any inquiry on my part for 4 months (emails and his office was closed every time I visited), and now my paperwork is in "dev null" (limbo) while the State of Illinois states they never got my paperwork. One just can't make this stuff up. I am a pro-active and organized guy who documents everything (and follows through), I can't imagine how vets who are not in a stable situation handle such idiotic agencies.
So, please support your local vet today and feel for them (they are doing more than having served their country, many are also fighting the government to treat them with the respect and dignity they deserve after they finished serving.... the least of which is to have a address in which to send a classified or over night letter that is signature verified.... and a case worker available for a call). Accountability.... our government needs to learn it.

A day of reflection

Yesterday, we spent time after Penny's CT scan to drive back to our Hotel and enjoy some of the scenery. We stopped by the Jelly Belly factory store to get Travis and his friend's jellybeans for Trav's birthday party. Due to scheduling issues, Penny's surgery was changed to next Friday (so we could go home and make it to Travis' party at his friend's house). So we decided to take a few pics given how beautiful the area is. Here are a couple of those pictures. Penny had a blast at Jelly Belly (she picked up a Hello Kitty doll for her collection... she is after all, a kid at heart). :)