Giving it to God and trusting Him to show me the way.

Only God knows what is truth. I go to explore that truth and I pray that I find it. With God's grace, I'll be here in 2 weeks to convey to others how it went. Otherwise, it was a great ride.

Adieu and God Bless.

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.

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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.   =)

Cancer.... returns.....

Regarding Penny,

Penny's cystoscopy 2 weeks ago........ opened Pandora's box (hence the reason for not having written anything in the past 2 weeks as it has been hard to absorb / articulate).

There was definitely cancer cells (very evident to the Urologist), and he removed them and had them biopsied. We found out last Friday afternoon that they were "High Grade papillary urothelial carcinoma with invasion into subepithelial connective tissue". We discussed with the Urologist, the "options" last Friday. She is to undergo another round of chemo (this time, she will be getting treated with Valstar <Valrubicin> - 6 straight weekly treatments). We are hoping that will resolve this latest spread of cancer. If it doesn't, Penny is looking at a Bladder-ectomy (removal of the bladder) and all that entails. She has been told, if the cancer is still there at the next Cystoscopy... that in order to prevent it's spread, that it is in her best interest to have her bladder removed... otherwise, her condition could turn terminal. It was that very thing that hit both Penny and I hard. Penny has showed such resiliency / bravery regarding her condition and I only hope to be as such if I was to ever come down with such a diagnosis (she has endured so much in her life, she is an inspiration to me and those whom we know). We will get through this with God's helpful hand. If it wasn't for the support of our church friends, friends, and family... this would be so much harder to go through. 

Regarding Penny's father,

It has been over 2 months and his services have ended (through his Insurance Company). We are still trying to get the Neuro-psych evaluation done (his attending physician has put in the order, but we are still waiting on "Healthspring". With Penny's additional treatment coming up, we are at a loss as to how to continue being the solution when he is so adamant that he is "fine" when he isn't.

Regarding me,

I spent over 4 hours at the VA last week (the Neuro-psychologist testing). I will be going back to Lovell on April 2nd in order to do the follow-up with the Neuro-psych regarding their final assessment (which includes the results of the Audiology department) plus I am to be fitted for a CPAP machine to deal with my "severe sleep apnea".

It appears that congress is still going to keep extended unemployment benefits hostage to the political process, so we are now looking at the worst case scenario..... bankruptcy (as the doctor still states I cannot "return to work" and the VA / Social Security are still reviewing my Disability case). So, we are at the end of that rope......

Alas.....

Philippians 4:6-7

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.

James 1:2-4

Consider it all joy, my brethren, when you encounter various trials knowing that the testing of your faith produces endurance.

And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

Matthew 6:34

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.

Travis is finally approved for SSI (Supplemental Security Income), and life continues. =)

Regarding Penny,

Penny's cystoscopy is in 2 days. We are preparing for the trip to Zion and being away from home for two to three days (with Travis being the only person at home). I am very concerned she is overwhelming her physical well being by trying so hard to accomodate her father regarding his needs. I hope this doesn't sound selfish (but it is... I know as I love my wife with all my heart and I am seeing her try so hard to give to her father with the time they have left while... but I don't want to lose any days with her as a result). Very selfish of me...... =(  but  can't help it. I am presently watching a documentary called "LuLu" on WorldChannel (a PBS alternative station). It is about a world reknowned medical researcher (Dr. Louise Nutter) who lived life hard and who also created drugs to combat illness (including cancer). It has me thinking about how much time one has left in one's life. I feel like I am slowly wasting away while trying extensively to keep ourselves stable in a sea of chaos (with the cliff always around the corner). It seems to me that Penny and I are seemingly never going to have the opportunity to just "relax" in our lifetime as there is always something we have to battle for (as it has been for the past 24 years). I really need to sit down with my Bible and meditate / pray on this........ and yet, the medication I am on seems to be the only solution to calm me down enough to not cry. I am spending a lot of time with depression, and it isn't getting any better while we keep dealing with situations that are difficult to resolve.

Regarding Travis,

 

Travis and I walked into the Social Security office in Woodstock on Monday as it was about to close (we had received a letter indicating that I had talked to someone at their office on Feb. 26th... the thing is, I received no such phone call). They had decided that Travis cannot manage his funds and that he required a representative to manage his funds, and they picked me). So we talked with the Social Security rep behind the counter and Travis decided that I will be the representative given my handling the family's finances already. And then, we asked the status of the claim and found out that it is APPROVED!!!!!! =)

Normally, the SSI amount is slightly over $700. Unfortunately, the financial formula for those who are working Part-Time is such that they get minimal funding (in Travis' case, around $110 per month as they deduct over $240 from the $700 using the formula what he gets help on from his mother and I). So now we need to sit down with the young lad (and get help from an attorney) to establish what he will contribute to the household. Ever since he started working via District 300 six years ago, we have not asked him to contribute to the household. That may have been a mistake when using hindsight (as he doesn't understand what it takes to manage a budget for daily living). We will be praying hard on this issue.

Regarding Penny's father,

We are now into Week 3 of Penny's father temporarily coming to live with us. The situation is such that he is not improving (he thinks he is, but he honestly isn't). His single goal is to move back to his mobile home. Penny and I are very frustrated as he is not being truthful to his caregivers and has many unrealistic expectations. It is like we are fighting molasses regarding his need to be on his own (given his inability to do so) and we constantly argue about the same issues. Despite the evidence, we are accused by him of making it a bigger issue than it is (when it is actually much worse than he believes it to be). So he spends his time answering medical questions as if he was a 30 year old - young - and spry (and he will not mention his issues when asked or omits information so the medical professional doesn't pry further). This is making it harder on Penny and I as he is constantly changing his mind regarding his future (his illness and emerging dementia are part of the problem). His home healthcare medical team is intent on only working within the confines of what time frame has been allowed by the Insurance company. They continually give him platitudes that he is doing great and should be released from the need for additional care (sabotoging our efforts to get him the help he needs as he clings to anything positive as evidence that he is perfectly fine). We are desperately trying to get a Neuropsych consult done to determine his future care and to get an unbiased opinion / evidence of his present condition (and to have established what <if any> limitations he has mentally and physically) so we can have the answers needed for future care. We believe he is a danger to others if he tries to drive. His doctor agrees. He doesn't seem to care though (he is more concerned about independence than for who may be harmed if he is unable to react normally to any traffic situation). His Parkinson's disease is not mild, he is still very stiff, his right arm shakes extensively when he is not looking, and has weakness in his left arm and his left leg. He is unable to zip up his coat or put on a seatbelt without help (and is one fall away from a broken hip).  And his house is a disaster area that will take weeks to clean up (Penny and I are in no condition to do this)..... meanwhile, we now have a person who is adding to our costs of living (and yet, he is unable to help us with any of those costs as he is keeping his mobile home - even though realistically.... he will not be able to live alone again). The irony of this fact is that next month, we won't be able to pay our mortgage nor our car payment (due to my continued unemployment and no income) does not register in him. Instead, he just continues to complain about the fact we keep our furnace at 69 degrees (while he keeps appliances, TV's, and lights on in every room he leaves). If it seems like I am being petty, imagine having a 16 year old that doesn't listen to a thing one says (and demands that we adhere to their requests) and does what they want to do anyways..... it is unfortunately like that.
 

Regarding me,

I again spent over 7 hours at the VA on Friday (with the Audiology department).

• Audiologist - So the tests on Friday was the spinning chair -  V.N.G. (Videonystagmography) test and then the V.E.M.P. (Vestibular Evoked Myogenic Potential) test this afternoon.
• On March 13, I will be going for a C.D.P. (Computerized Dynamic Posturography) test.

I also saw the Psychiatrist this afternoon and brought her up to speed regarding everything I've dealt with in the past 2 months. At this point, it seems to me that all she can do is treat my symptoms (but can do nothing to resolve what I am going through). It will take the VA psychologist's efforts to help me find coping mechanisms for me to be able to eventually function without medication. Penny pretty much knows now when I haven't taken my medication yet, as she sees me "jumping out of my skin" (as she puts it).... she sees me getting very frustrated easily (and then I take my medication and then I get so tired and yet, can't sleep). it is a very frustrating cycle, especially since it snowing every couple of days and getting bitter cold on the other days (we are literally stuck in the house as we have no funds to go elsewhere).


I am frustrated about so many things, and I really need to sit down with God tomorrow and engage in some serious prayer (as I truly need to give it to God).

As I have said before, by the grace of God go I... as I am dealing with this as best I can (I just wish I was handling all of this better than I presently am).

The latest at the Andersen household.....

Regarding Penny,

 

So we are getting ready for Penny's next Cystoscopy (on March 7th). We are praying that the results will be negative and that she has beaten her cancer for another 3 month period. We are praying hard for another 3 month miracle.

 

We are now into Week 2 of Penny's father temporarily coming to live with us. As he is eligible for home health care, we are starting to see activity regarding a home health nurse stopping by (in addition to Physical Therapy). We stopped at his Attending Physician (who talked to him about his Parkinson's Disease and limited memory / physical abilities). He is now aware via the doctor, that he can't live by himself anymore and that he can no longer drive. Unless he physically / mentally improves, the situation will only see him slowly getting worse over time. We are preparing for that eventuality, we just don't know when it may happen (months or years). Our issue is that with my maladies,  Penny's many disabilities, and Travis' limitations.... if her father's condition continues to degrade, we won't be able to care for him as he needs for excellent quality of life. He absolutely loathes facilities that are there for Seniors (and I understand his concern / worry), however... it is a lot of responsibility to shoulder (not to mention the fact we live in a 2 story 110 yr old farmhouse that is not equipped to handle anyone who has limitations... and we only have 1 small bathroom). We don't mind the responsibility (and welcome it), it is recognizing that we are not healthcare experts and may not be the best solution for his needs. We do not have the activities and facilities at our house (that help older seniors to live an active lifestyle). He is essentially sitting in our living room or in his bedroom (watching TV). Penny is in no condition to be a caregiver.... and it is breaking her heart. We are making do as best we can (with prayer and patience).

 

Regarding Travis,

 

We are still waiting for his Social Security Disability decision. Apparently, it is now at their Quality Assurance office in Chicago awaiting a review of the SSD decision. It isn't helping that their search for assets regarding Travis isn't being resolved (Travis has savings bonds that he reported to the Social Security Administration as he was required to do so), unfortunately... his Uncle in Michigan has the Savings Bonds and will not provide Travis the information needed to give to the Social Security Administration (he allegedly is afraid Penny and I will turn in the bonds before they mature and insists that he is in control of those bonds until he releases them). We have no clue why he thinks that. All we were asking him for was for the information (to present to the Social Security Administration). Now, we will have to get an Attorney to get the answers (as Travis will not receive any benefits until the information reaches the government). One just cannot make this stuff up....... =(

 

Regarding me,

 

I spent over 7 hours at the VA on Tuesday. Starting with Blood letting (4 blood tests with a total of 7 vials drawn... by Nurse Ratchet who couldn't find a vein to save his life), then general surgery, radiology (for x-rays of my feet), audiology, rheumatology, podiatry, orthopedic, pharmacy, & neurology.

 

Why?

 

I fell last week (which contributed to my hernia repair ripping and returning). So they are trying to get to the bottom of why I am falling (8 times in the past 2 years).

• Neurologist - So one of my blood tests is for something called "X reflex" (a blood test to look for a genetic marker... ordered by the neurologist). He also ordered the neuropsych test to determine the extent of my memory plus neurological issues (I failed a preliminary memory / cognitive test).
• Podiatrist / Radiology - I then got an X-ray for "plantar fasciitis" in both feet (my arch is in tatters regarding my tendons) . I then received a brace to stabilize my right foot (which is the worst of the 2 feet). I now need to get a new set of shoes (2 different sizes to accommodate the brace).
• Audiologist - They want to see me for my falling (checking the inner ear). A total of 9 hours of testing (6 hours this Friday) and 3 hours on March 13th.
• General Surgery - I saw the General Surgeon and he ordered a CT scan with contrast to see how bad the ventral hernia repair is now (I may need to get another surgery to repair the damage). I took Barium tonight and will go to Lovell Hospital on this morning for the CT scan. The surgeon put me on no lifting for the next 8 weeks due to the hernia issue.
• Orthopedic - The ortho surgeon put me on "no lifting" for the next 18 months (due to my shoulder).
• Rheumatology - My gout looks like it is controlled (and they ordered labs for my liver and kidney levels regarding the allopurinol I am presently taking) plus the anti-depression medication I am on. . They need to keep a close eye on my liver as allopurinol eventually causes Liver issues in many people.
• Sleep study - I also got a call from Lovell Wednesday and the results of the sleep study are in. I apparently have "Severe Sleep Apnea" (my breathing stopped an average of 97 times per hour and I was told the tech was so worried about me, that he came in a couple of times when breathing stopped longer than a minute). So I will be getting a CPAP machine in short order.

At the end of the day, this will determine why I am falling and if there is a possible diagnosis for what I am going through (my symptoms are seriously looking like MS symptoms.... and the VA doctors are finally taking me seriously). The symptoms are evident (my brother and the former President of CGL have seen me fall), and the last 2 falls caused shoulder damage and now a recurrence of my ventral hernia.

 

Combined with my Major Depression / PTSD / Anxiety issues (which I am not allowed to "return to work"), I am no longer allowed to even try to get a job.... so the VA will work with me to present me to prospective employers (with the limitations placed on me). The neuropsych will be determining if I am still allowed to drive or not :( (I'll know within the month).

 

By the grace of God go I... as I am dealing with this as best I can (at least, I don't have a terminal disease diagnosis). *Bonus*

 

The only problem at this point is Social Security and the VA still are backlogged regarding my Disability claims (and with no income, I am in one hell of a catch 22 situation as I am not cleared to return to work).

 

Oy.

 

God has provided and I have faith that all will be resolved in God's time.

 

Dear Lord, as my loved ones and I await the results of medical tests about our afflictions, let us offer you our anxieties for our good and your glory.  Calm us in our worries, knowing these don’t add wisdom but rather stress to this situation.  Enlighten us, though the power of your Spirit, to make wise decisions as to treatment. Help us not to turn away from You in these fragile, painful moments, but rather towards you for grace and strength. Comfort us in seeking you now as we place all our concerns in your loving hands as we say “Thy Will Be Done.”

 

1 Timothy 4:8

for bodily discipline is only of little profit, but godliness is profitable for all things, since it holds promise for the present life and also for the life to come.