Saturday, August 16, 2014

Remission...... =) and the financial cliff...... =(

It has been almost 5 months since I posted to this Blog. The reasons are many, but it really came down to the occasional comments that this blog was more for me than for my wife (who is fighting cancer) and that it had gotten dark.

Well cancer is an insidious disease, I wonder why some people think a blog should be a ray of sunshine?

When I first started posting, the blog was for people (who knew us) so they could have a single place to get information quickly regarding Penny's cancer battle and so people could follow and maybe learn where the shortfalls are and can avoid them (lessons learned by us could spread elsewhere). It evolved into being a place for me (the blog writer) to discuss our family's journey into what most people dare not write about (the hard path regarding the journey that is cancer). Since this affects jobs, finances, friendships, medical decisions, depression, happiness, etc.... I wanted to put a spotlight on those things as many are afraid to bring it to light (or talk openly about it). Some people tried to indicate it was a pity party (without taking into consideration anything but their narrow worldview). We have survived for over 2 years with the help of family, friends, our church, and strangers..... and I would not trade that experience with anyone else in the world. I have been blessed to be by the side of my wife for her entire cancer battle (for over 2 years), and the strength of our Marriage has only improved in the face of adversity. If something gleaned from this blog that can help others (even one person), this journey will have been worth it.


On June 13th, Penny went for her 10th Cystoscopy. So, we went to the Cancer Treatment Center of America in Zion, Illinois on June 12th in order for CTCA to run labs and a prepare for the Cystoscopy on the 13th. Amazingly, the latest Chemo seemed to help Penny turn the corner as she was released that afternoon as there were no tumors to biopsy (only a small patch of bladder material).... the first time she was released the same day of the cystoscopy since her first diagnosis.

Our call to Cancer Treatment Center last year in mid-year was definitely the right call to make (every cystoscopy up to that point at Sherman Hospital had put her in the hospital for days to recover (and she was not improving). She is now officially clear of cancer for the first time in 30 months (and Penny still has her bladder).... an amazing result considering the journey thus far.

In the interim, Travis was approved for Social Security Disability in April and is now covered by Medicare (which is a HUGE relief considering that he will be disabled for the rest of his life). Now if something was to happen to us (his parents), he has options available to him regarding his future.

Regarding my VA claim, I received a denial (they did not send me to a doctor for a review, even though I waited a year for a decision), so I am appealing that decision using a company to represent me.

Regarding my Social Security Disability claim, I have received a second denial and have applied for an Administrative Law Judge review (which is almost standard nowadays), but I have an excellent company representing me regarding this appeal (so we remain hopeful that this will result in an eventual approval. My medical situation is still a mess as the VA is sending me to many specialists to determine just how "off" I am at this point (my right shoulder, my lower back, my gout, my obesity, my vestibular issues, my Depression/Anxiety/PTSD, etc.. They have found via MRI -  "Partial disc dehydration at L3-4 / L4-L5". "Mild to moderate facet arthropathy on the left at L4-5 / L5-S1". So I have s degenerative arthritis affecting the facet joints at L4-5 / L5-S1.

Also, On Saturday (August 2nd), we received 2 letters from IDHS....... indicating due to "Your eligibility cannot be determined due to your FAILURE to provide necessary information". The people dropped off Medicaid? My wife and son (I still have it... along with VA Healthcare). Stunning........

Mind you, we have provided everything they have requested (I have 7 binders of documents which I brought with me to DHS last December... of which they copied everything necessary to make a decision). Get this, I still have Medicaid (and all 3 of us were on the same case file). So we went to the Illinois DHS on August 4th to ask to see someone to find out what they allegedly didn't receive. After standing in line for 90 minutes, we get to the window. We are told that we have to appeal the decision. I asked, what is the appeal based on (what didn't they receive)? She says........ "I don't know", but for us to file an appeal. Then she indicated there was nothing more that she can do. I asked her how can we find out what the missing information is (because one can never get a live person calling their or the Springfield. IL. office... and when one does, they want us to go to the local office.... which we were already at). She then got the hint we weren't walking away with a dismissive "I don't know".

I asked..... how can a case covering 3 people accept the head of household for medical benefits, but reject the disabled spouse and disabled son after they waited a year for a decision (without being told what the definitive reason was for 2 of the 3 people to not be eligible for the same medical benefits)? How can a household get different decisions when all of our information is the same regarding income (which is the only criteria besides having medical insurance through another party)? Finally, she walks off and talks to her manager and comes back 10 minutes later asking us to come back tomorrow with all of our files/documentation and wait for a Customer Service manager to sit down with us. 

So Penny and I went to the DHS office the following day, we waited over 3 hours and when we got to the Customer Service Rep, the system they use was "down". So we had to go back again on another day.

Travis and I went to the DHS office (my 3rd visit in 5 days) on August 8th. After 90 minutes (we were 3rd in line), the re-assigned caseworker told us that the previous caseworker "made a mistake" and they were fixing that mistake today or Monday by approving Penny and Travis' Medicade coverage. Disaster has been averted and we can now concentrate on Penny's continued cancer treatment plus our mortgage / living situation.

Our Illinois Hardest Hit has ended (on July 31st), so we are now officially facing the financial cliff. We have no means to pay our mortgage, so we are now looking at the possibility of bankruptcy. We'll need a prayer for that one.

Penny's next Cystoscopy is scheduled for the day after our anniversary, so we will be at the hospital drawing labs on our anniversary. It isn't the first time Penny has been hospitalized on that day, but we are hopeful that we will have something to celebrate (the continued lack of cancer) during her recovery from that procedure.

That's about it (for now). I'll be posting a 2 1/2 year overview blogpost in a few days so anyone following can see what our road has been like (via bulletpoint) so one doesn't have to read the entire blog.

In the interim, God has blessed us and we continue to praise Him for all of our blessings.

Steinar and Penny Andersen / plus Travis.   =)