Right then confession time;
I cant get motivated to get out of bed on the weekends. I sleep, I binge watch Netflix, I cuddle with Zoe. It has been almost a year since Daddy Passed and a little less since we lost Mom. If I am to be completely honest, I'd have to admit that I'm not coping so well with their loss. Sometimes I cry, mostly I try not to.
My house is a wreck, granted there have been some maintenance and repair setbacks in the way but it is a mess and may be contributing to my inability to drag myself out of bed on the weekends. It is a bit overwhelming. I have one room which is mostly clean at the moment. I removed everything so i could rip out the wall to wall carpeting. I was planning on priming the ceiling and walls, but wasn't able to drag myself out of bed today. I feel guilty, but it is like I have no will. I'm weak. I'm incredibly overweight, and I'm yeah, kind of really sad. Mom and Daddy would be so pissed if they were here right now.
Yeah, kind of needing a kick in the ass right about now.
I just realized I never blogged about losing Daddy then Mom.
Last year about this time I went out to NM to visit Mom and Daddy. I flew into Santa Fe, Daddy picked me up from the airport. It was wonderful to see him. I had absolutely no idea the week would spiral out of control. I was going to get to spend time with Mom and Daddy, and my brother Brian and his family.
About my second day in, I got a call from Dad, he said he wasn't able to get up and he couldn't feel his leg. I ran over from feeding mom and ordered an ambulance to take him to the hospital. The emergency room doctor wasn't great. He honestly seem not terribly concerned and ordered a lidacane patch and called it sciatica. Long story short, Dad got worse. We ended up back at the ER and a new Dr. said he had a clot blocking flow to his right leg. The sent him to the Heart Hospital in Albuquerque, I followed the ambulance and spoke to the doctors there. They tried to save Dad's leg with an angiogram. It wasn't successful. Dad was 80 years old and he was tired of watching Mom fade a little more each day. His heart was broken watching her lose her memories.
Brian got there shortly after Dad came out of surgery. The surgeon was very kind but Dad refused amputation. I completely understand. He was ready to go. I know this in my head, but my heart still hurts. We respected his decision. The surgeon agreed as Dad may not have survived the amputation and it would have been a painful way to go.
Brian, Joel and I stayed with him, his sisters came down, as did Jamie & Jeff, our cousins. A couple of guys who worked for Dad came down so say Goodbye. Even got a chuckle out of Dad while they were there.
We stayed until Dad was gone, then the Aunts and cousins left. Brian, Joel and I stayed to make arrangements.
40 days later Brian called to let me know that Mom passed quietly in her sleep.
So, that was almost a year ago and I'm still grieving.
Yeah, grief sucks.
Saturday, August 18, 2018
Tuesday, July 25, 2017
In a fit of Pique; Second Verse
I called the insurance company back to check the status of my complaint. No record was found of Thursday's call. So I put in a request to have a supervisor call me back.
My scans are still not all approved. The soft tissue of the neck, code 70491, is the hold up this time. it is generally a crap shoot as to which scan will be the problem child. Sometimes it is the upper extremity, where the cancer originated, sometimes the neck, (because we all know there are no lymph nodes in the neck.)
Dr. Pok still needs to find time to do another Peer-to-Peer review. He just needs to record his discussion and play it back for the reviewers every 6 months.
My scans are still not all approved. The soft tissue of the neck, code 70491, is the hold up this time. it is generally a crap shoot as to which scan will be the problem child. Sometimes it is the upper extremity, where the cancer originated, sometimes the neck, (because we all know there are no lymph nodes in the neck.)
Dr. Pok still needs to find time to do another Peer-to-Peer review. He just needs to record his discussion and play it back for the reviewers every 6 months.
My plan does not include the rider for a case manager. This time when I spoke with the customer service person, they were very understanding and, seemingly, helpful. We'll see what the next supervisor says. I need to keep a notebook on all of these conversations so I can remember who said what.
There will be more to come I am sure so stay tuned.
Thursday, July 20, 2017
In Another fit of Pique!
In dealing with trying to get another series of scans approved for my bi-annual CT's below is a letter to my company's insurance broker. Company names have been removed to keep my ass out of court, I hope. If I missed one, let me know and I'll remove it.
Insurance companies treat patients like we are trying to get something for free. Seriously it isn't as if cancer is fun in any way. It is scary as hell. It sucks. Even after you've made it to the other side, you get nervous with every scan wondering if it will show up again.
Dear sir,
Insurance companies treat patients like we are trying to get something for free. Seriously it isn't as if cancer is fun in any way. It is scary as hell. It sucks. Even after you've made it to the other side, you get nervous with every scan wondering if it will show up again.
Dear sir,
I hope your week is going well. I
hope you are healthy and happy and enjoying the sunshine.
Just remember, you asked. Also
please know that I am venting here. This
has absolutely nothing to do with you personally.
This is the kind of thing My medical team and I have had to deal with every
6 months for the last 4+ years. It is a
pain in everyone’s ass.
I have been part of a clinical trial since January 2013. It will be ongoing for some time yet. I get bi-annual CT scans for this trial, it
is also nice to have bi-annual proof that the cancer has not returned. Nearly every time I go in for my appointment,
one scan has not been approved. This means
I need to reschedule to get the other scan on another day, taking time out of
work to go in. Sometimes I’ll get the
scans that have been approved and my Dr. will have to call in for a
Peer-to-Peer to get it approved while I am drinking the barium solution as I wait. Sometimes I end up having to reschedule the
scans or come back for the scans which were not previously approved.
EvilCompanyX is the management company that does the approvals for
Insurance Company A. They do the approvals for most of
the scans for nearly all of the insurance companies. They have been the hold up for 95% of the
scans I have had over the last 4.5 years.
Here are the steps my medical team has to go through to get approval.
Scans are scheduled 6 months in advance.
1. Dr. office requests
approval by faxing in the information for each appointment 2 weeks in advance.
2. Get denied
because the request is sent in too soon.
3. Request approval
by faxing in the information again 1.5 weeks prior to my appointment.
4. Information sits
on the fax machine for a week.
5. Dr. office
calls to ask about the scans approval.
6. eviCompanyX says
they have no request.
7. Dr. office
sends the fax again and starts making calls.
8. Monday: I
get a call from Radiology saying my scans have not been approved.
9. I get on the
phone with the insurance company and start asking questions. They are not able to give any answers. I ask for a nurse case manager. They transfer me to their nurse call line, she
and I chat for a bit so she can get an idea of what is going on. She indicates that according to her screen I
should qualify for a case manager. She
has me listed as having Insurance Company ITC & BH Cond Mgt. She calls Insurance Company back to see about getting me
into these programs. Insurance Company says they don’t
see that on their end. They hang up and
she asks me to check with my HR person to verify if we have access to ITC as it
would be very helpful for me.
10. Tuesday: I
call insurance company asking more questions about scan approvals. They conference
in eviCompanyX who can’t tell me anything because I am only the patient. They only speak with medical professionals.
11. I ask to
speak with the supervisor.
12. After another
transfer I am told that they only got the request for approval Monday. I know for a fact this is not accurate as my
Nurse has informed me that they have requested approval 2-3 times by now. They say it may be approved and I should
check back with the imaging center in the morning.
13. Wednesday: I
call Radiology, they have not received approval.
14. I call my
Clinical Trial Nurse and she starts making phone calls.
15. I get a call
at noon from my clinical trial nurse who called someone in radiology who says
they finally have approval.
16. I leave work
at 2:30 to head to MCV for my scans.
17. I leave my
car with the parking guru’s and head down to imaging only to find out they
still don’t have approval.
18. I call the
insurance company and start asking questions again.
19. While I am
on the phone I text my Clinical Nurse about the approval. So she calls Radiology asking questions. It turns out that someone up in the radiology
office was reading from the wrong date on my chart.
20. Meanwhile I am
still on hold with Insurance Company. They are
trying to call my Nurse to get information from her.
21. My nurse has
her assistant call me to let me know she is on hold with the insurance company
waiting to get through, she doesn’t want me to think she has forgotten about
me.
22. I let the
insurance company know she is on hold with her people waiting to get
through. I end up being the go between
until they finally get connected.
23. The
insurance company person finally gets both of us on the line then attempts to
conference in someone from eviCompanyX. That
takes about 17 minutes, (they have the worst Muzak btw.)
24. We speak
with someone with eviCompanyX who has to transfer us to a medical review
secretary. We give my patient
information and find that the neck scan is the hold up. Again, they say they only received the
request a few days before but that they need more information before they can
approve the final scan.
25. I chime in
to let them know they have been the hold up with my scans on many
occasions. It is always the same one or
two scans they refuse to approve. I
mention that my Dr. administers all of the clinical trials in a major teaching
hospital that handles thousands of patients.
I then mention that this happens about 95% of the time. Most clinical trials require regular
scans.
26. My nurse
mentions that this is correct. Dr. Awesome ends up going toe to toe over and over on scans that occur regularly. At this point the problem is equivalent to a
corporate cancer of wasted time, effort ,and money for everyone.
27. Today I had
to reschedule my scans for July 31st as that was the next opening
they had in their schedule. This also
required me to reschedule my appointment with my oncologist, I don’t have that
appointment date yet.
So, I have spent approximately 8 hours on the phone with the insurance
company over the last week. I left work
early to make my appointment, had to pay $5 for parking to find out I can’t
have my scans unless I sign a wavier which the insurance company could use to
make me pay for the whole thing.
Don’t shake your head. This happened
in 2012 when I need a PET scan to determine how far the cancer had spread prior
to surgery. I’ve been fighting this crap
for almost 5 years by now. That PET scan
cost me $10k because the insurance company refused to approve it after the fact. My surgical oncologist was livid. He ended up doing 3 Peer-to-Peer’s trying to
get it approved. I could go on, but who has
the damn time? I do have that cluster
fuck written down for posterity. I
actually blogged about it during my treatment.
If you are interested go here for my blog post on that cluster from hell:
https://blkliesen.blogspot.com/2013/02/ (Trivia:
my oncologist uses my blog to educate patients on the immunotherapy for
melanoma. Yeah, if it happened it went
in the blog. I'm educational and shit.)
Now, I am out the 8 hours pay spent on the phone, 2 hours at MCV, $5 for
parking, and I still don’t have approval for said scans. I have also spent about half an hour on the
phone today trying to get rescheduled.
Since they couldn’t get me in until the 31st, now I worry
that the approvals I do finally have will be void and we will have to start the
process over again.
My patience has gone the way of the dinosaur. Insurance companies are making record profits
because they couldn’t give a rats colon about the people who buy in to their
policies. They refuse to be strait with
Doctors, Nurses and patients because they think we enjoy drinking barium which
bloats the hell out of you, getting poked with needles to insert an IV to ride
a machine to see if the cancer is back.
Then I get to spend the rest of the day in the toilet because nothing
messes up my gastric system like the chemicals used in CT scans. This is not like Disney land! There is nothing that is actually fun about CT
scans. Now, I know I make it sound like
fun, but really, it isn’t.
I am now waiting to see what comes of this. Wish me luck!
Update:
After a long conversation and requests to speak with a supervisor, I finally got through. I am not terribly confident that anything will come of it, and will have to check back but at least something is on record and they promised to push it up the chain. Here's hoping I can get some relief for my medical team. Heard from my Dr. today that he was on the phone for more than one peer-to-peer today. Insurance companies exhaust him.
Wednesday, July 5, 2017
Anticipation
I haven't been around much I know but life has a way of well, getting in the way.
Thus far this spring/summer I've been gardening like a crazy woman. I've been landscaping the slope along the fence between the garage and the alley. This spot has been a great killer of lawn mowers in the past. Digging it up and landscaping it then mulching has been my job every spare moment away from the office.
I am calling it my 'Mom" garden. My mother is my gardening inspiration for that slope. Mom always loved flowers and as she isn't able to garden anymore I've taken up the task at my house to remind me of her every time I look at the flowers. I still have a tiny bit left to plant then mulch. I have daisies, yarrow, philox, roses, lavender, daylilies, and thyme planted there so far. I did manage to put in some lantana last weekend when it wasn't too hot. Hopefully I'll find time to finish it up soon.
My biannual scans are coming up next week. I tried to send my insurance information to my DR. & Nurse but haven't heard back from them yet. I wonder if I should call the radiology department to see if they have the correct information instead? Oh well, I am sure someone will let me know eventually.
I would hate to get there only to be told that the insurance hadn't approved anything. This has been a problem on occasion and it isn't pleasant. I've had to go back the next week for 1 scan which means drinking 2 bottles of the vile stuff. Then my stomach is all messed up for another week.
Beyond that I have been working an insane number of hours as I have 4 deadlines in 5 days. Yes, you read that right. One is an addendum so that isn't too bad. I am really hoping to have some time to go see Mom & Dad soon. I just need to earn enough vacation days and save up the money to go. I miss Mom & Dad so very much. They are in New Mexico near Brian now which is grand. It'll be nice to see everyone. I can fix dinner for Brian, DJ and the kids. Maybe I can even get some things prepared and frozen for them. I know both Brian and DJ are super busy so it would be nice to have some freezer meals ready for them to toss in the oven or in a crock pot, easy peasy.
Thus far this spring/summer I've been gardening like a crazy woman. I've been landscaping the slope along the fence between the garage and the alley. This spot has been a great killer of lawn mowers in the past. Digging it up and landscaping it then mulching has been my job every spare moment away from the office.
I am calling it my 'Mom" garden. My mother is my gardening inspiration for that slope. Mom always loved flowers and as she isn't able to garden anymore I've taken up the task at my house to remind me of her every time I look at the flowers. I still have a tiny bit left to plant then mulch. I have daisies, yarrow, philox, roses, lavender, daylilies, and thyme planted there so far. I did manage to put in some lantana last weekend when it wasn't too hot. Hopefully I'll find time to finish it up soon.
I picked up this amazing ceramic planter and filled it with hibiscus and a lovely variegated vine.
Day lily Bela Legosi
My first boquet from the garden.
New rose bush, one of 5 I have added to this slope.
My little day lily patch. I have more to put in but it will probably be a few years before it fills in.
I really should buy stock in sunscreen since I practically bathe in it before I go anywhere. I have also planted peppers, tomato's, cucumbers and zucchini in the back yard. I have even had my first tomato from the garden. It was incredibly delicious. I have some peppers that should be ready soon as well. I can't wait to harvest the squash and cucumbers too. Yum!
My biannual scans are coming up next week. I tried to send my insurance information to my DR. & Nurse but haven't heard back from them yet. I wonder if I should call the radiology department to see if they have the correct information instead? Oh well, I am sure someone will let me know eventually.
I would hate to get there only to be told that the insurance hadn't approved anything. This has been a problem on occasion and it isn't pleasant. I've had to go back the next week for 1 scan which means drinking 2 bottles of the vile stuff. Then my stomach is all messed up for another week.
Beyond that I have been working an insane number of hours as I have 4 deadlines in 5 days. Yes, you read that right. One is an addendum so that isn't too bad. I am really hoping to have some time to go see Mom & Dad soon. I just need to earn enough vacation days and save up the money to go. I miss Mom & Dad so very much. They are in New Mexico near Brian now which is grand. It'll be nice to see everyone. I can fix dinner for Brian, DJ and the kids. Maybe I can even get some things prepared and frozen for them. I know both Brian and DJ are super busy so it would be nice to have some freezer meals ready for them to toss in the oven or in a crock pot, easy peasy.
Wednesday, March 8, 2017
Next!
I really should get on here more often, I don't have anything to say today about cancer other than I'm getting ready to shave my head again with St. Baldrick's. March 25th is our great green shearing day. I can't wait! I love being able to do something that makes a difference. Since I have joined the skin head ranks, new treatments have been developed with the money raised. When I started, there was no treatment for Neuroblastoma. Now there is a treatment. It is important to do something to help these kids.
Resurecting an old post from the first year I joined St. Baldrick's:
"A very cheerful update today. I got to go to the Church Hill Irish Festival with friends today. My best friend, Mary, & I decided to join in the shaving fun. We managed to raise almost $300 in about an hour, not bad for a last minute entry. Then we let them shave our heads. I have to say, it felt wonderful. I think I'd like to start earlier next year and see if we can't raise some real money for St. Baldrick's Foundation.
I even got to talk about my cancer & treatment a little.
My best friend & I before, during, and after our shearing. Photo courtesy of my friend Molly Blanton.
We had a wonderful time and I really want to do it again next year. I think we look amazing! We were cheered on by the crowd and even got a few hugs from complete strangers.
This was the best Saturday I've had in 3 months! The nausea was still present but managable. I was sore, but didn't let that slow me down - too much. It was so nice to get out of the house and have some fun on a beautiful day.
Bonus: I won't have to worry about greasy hair, or buying shampoo, & it dries instantly. Maybe I'll keep this style for a little longer than I had initially planned.
What a fun memory! Now if only i were as small as I was in those photos. What can I say, I am a work in progress. If you would like to donate, please click on the link below.
https://www.stbaldricks.org/participants/mypage/889834/2017
On the employment front, I am looking for a change.
I have my resume out and have 2 offers coming, I am told. I spoke with another local company, but am not sure I am qualified enough for them. They do hospitals and I know a lot more about lighting than I do power.
I saw some former co-workers today who asked me to come back to the fold. I just submitted my application there. We shall see. Now I just have to be patient and wait to see what the future brings.
Love and hugs for everyone!
Resurecting an old post from the first year I joined St. Baldrick's:
"A very cheerful update today. I got to go to the Church Hill Irish Festival with friends today. My best friend, Mary, & I decided to join in the shaving fun. We managed to raise almost $300 in about an hour, not bad for a last minute entry. Then we let them shave our heads. I have to say, it felt wonderful. I think I'd like to start earlier next year and see if we can't raise some real money for St. Baldrick's Foundation.
I even got to talk about my cancer & treatment a little.
My best friend & I before, during, and after our shearing. Photo courtesy of my friend Molly Blanton.
We had a wonderful time and I really want to do it again next year. I think we look amazing! We were cheered on by the crowd and even got a few hugs from complete strangers.
This was the best Saturday I've had in 3 months! The nausea was still present but managable. I was sore, but didn't let that slow me down - too much. It was so nice to get out of the house and have some fun on a beautiful day.
Bonus: I won't have to worry about greasy hair, or buying shampoo, & it dries instantly. Maybe I'll keep this style for a little longer than I had initially planned.
After a long and wonderful day, I'm off to bed. May you dream of rainbows & unicorns!
Nameste!"
What a fun memory! Now if only i were as small as I was in those photos. What can I say, I am a work in progress. If you would like to donate, please click on the link below.
https://www.stbaldricks.org/participants/mypage/889834/2017
On the employment front, I am looking for a change.
I have my resume out and have 2 offers coming, I am told. I spoke with another local company, but am not sure I am qualified enough for them. They do hospitals and I know a lot more about lighting than I do power.
I saw some former co-workers today who asked me to come back to the fold. I just submitted my application there. We shall see. Now I just have to be patient and wait to see what the future brings.
Love and hugs for everyone!
Saturday, October 29, 2016
4 Years Cancer Free and counting!
As of Monday October 24th, I am 4 years cancer free.
Wow!
How amazing is that?
I spent half of this week in Philadelphia, PA and a Society of Women Engineers Conference. What an empowering week it has been.
I got to meet another Integral Group engineer from our Vancouver office. What an amazing young woman! Meeting people like her makes me feel so much better about our future. She is incredibly intelligent and inspiring. I hope to live up to her example some day.
We attended some incredible talks and walked the job fair floor speaking with the young people we met. It was a truly uplifting experience. I am definitely going to recommend we recruit from SWE next year.
I stayed pretty low key until last night when I finally went out to dinner. I had 4 amazing young women with me. We talked about engineering and how much adventure they had ahead of them. We spoke about their respective engineering majors and what the wanted to do after college. I told them what I do and what my company is about. It was a fabulous evening. I gave them my card and asked them to feel free to contact me with questions about anything.
So back to the topic of being Cancer Free!
I almost can't believe it has been 4 years. I remember at the end of September in 2012 I was competing on my office Innsbrook Corporate Games team and found a lump in my upper right arm very near the original site of my mole that proved to be Melanoma 2.5 years prior. I made a panicky call to my surgical oncologist's office for an appointment but they couldn't get me in right away. I cried on his secretary's shoulder until she got me in the day he got back from vacation. He took one look at my arm, felt the lump and said, "don't leave until the pathology folks come down to get a sample," then he left. Just 2 hours later I got the call from Dr. Neifeld confirming my worst fear. I remember calling Mom and Dad to tell them. Mom got off of the phone and looked up flights and was in Richmond within 2 days. We went round and round with the insurance company. Dr. Neifeld argued with them multiple times. I cried and Mom finally said to get the damn scan, the best one for my kind of cancer and we would deal with the cost later. Mom and I had a great month and a half together before my surgery. God I loved having her with me. I picked her up at the airport with Abby, my Great Dane, in tow. We drove north to Maryland to see some friends of mine. That was one of the best weekends we could have asked for. Mom got to meet some new friends and we had an amazing time. Mom got to eat the first baguette in years that weekend. My friend Laura is also gluten intolerant and had gone to a gluten free bakery in Alexandria where they have mastered really good bread. Mom was in heaven! (Laura - My mother always loved you for that leftover baguette. She stretched it out for 3 more meals.)
For those who don't know my Mom, she is my very favorite person in the world. I miss her terribly. I can't wait to see her and Dad in a few weeks. Sadly Mom may not know me when I get there. you see she has Alzheimer's with Lewey Body Dementia. A most insidious disease combination. Alzheimer's is bad enough, but toss in the other and it takes the mind so quickly. Just 4 years ago Mom was great. She worried about memory loss but she wasn't diagnosed yet and was fully functional. She hasn't been in a home for more than 2 years and her mind and body are failing at an alarming rate.
So, back to having my mom with me for more than a month. She got me through surgery like a champion. She made me chicken soup after the surgery. I love my mother's soup. We cooked and laughed together. We took day trips and had an amazing time. I miss her so much. I hated to see her go back home but I know she missed Dad and he missed her too. Another thing I really love is that they have always had such a strong relationship. Dad didn't like to travel like mom did. He had no problem letting her travel when she wanted to. His trust in her was complete, as was hers for him. I wish I could find something like what they have. Their Love is beautiful to behold.
So, back to being cancer free. I know I am all over the place here, but you'll just have to forgive me for it.
January after my surgery I joined a study at the Medical College of Virginia. Mom was against it as it was more than a year long and she wanted me to live a full life and just move on from the cancer. Unfortunately I couldn't move on without doing something preventative. This was round two for me and once you have round two, you really want to do something to make sure it doesn't come back. Also the tumor was in a lymph node so the chance of yet another reoccurrence was quite high. I was terrified of doing nothing. After all I had done nothing for 2.5 years, look what that got me?
I met Dr. Poklepovic his nurse, Maria Quigley around the first of January of 2013. just a few tests later and I was accepted into the study. I was randomized into the into the high dose of interferon
I went into my first treatment January 14th, 2013. If you look back to my first posts in this blog, you can see how things went. Treatment was an adventure to say the least. I also firmly believe it was the best thing I could have done for myself.
While immunotherapy wasn't a picnic, I made it through and I am so glad I did it. I met some amazing people along the way. I learned a lot about my limits and I feel stronger than I have ever felt in my life. I am still working to get my endurance back up to where it was before treatment though. There is always room to improve.
this time next year I will be having a party to celebrate being cured. I'll be able to donate blood for the first time since 2009. I plan on making an appointment to donate October 24th next year. I can't wait!
Love and hugs for everyone!
Brenda
Wow!
How amazing is that?
I spent half of this week in Philadelphia, PA and a Society of Women Engineers Conference. What an empowering week it has been.
I got to meet another Integral Group engineer from our Vancouver office. What an amazing young woman! Meeting people like her makes me feel so much better about our future. She is incredibly intelligent and inspiring. I hope to live up to her example some day.
We attended some incredible talks and walked the job fair floor speaking with the young people we met. It was a truly uplifting experience. I am definitely going to recommend we recruit from SWE next year.
I stayed pretty low key until last night when I finally went out to dinner. I had 4 amazing young women with me. We talked about engineering and how much adventure they had ahead of them. We spoke about their respective engineering majors and what the wanted to do after college. I told them what I do and what my company is about. It was a fabulous evening. I gave them my card and asked them to feel free to contact me with questions about anything.
So back to the topic of being Cancer Free!
I almost can't believe it has been 4 years. I remember at the end of September in 2012 I was competing on my office Innsbrook Corporate Games team and found a lump in my upper right arm very near the original site of my mole that proved to be Melanoma 2.5 years prior. I made a panicky call to my surgical oncologist's office for an appointment but they couldn't get me in right away. I cried on his secretary's shoulder until she got me in the day he got back from vacation. He took one look at my arm, felt the lump and said, "don't leave until the pathology folks come down to get a sample," then he left. Just 2 hours later I got the call from Dr. Neifeld confirming my worst fear. I remember calling Mom and Dad to tell them. Mom got off of the phone and looked up flights and was in Richmond within 2 days. We went round and round with the insurance company. Dr. Neifeld argued with them multiple times. I cried and Mom finally said to get the damn scan, the best one for my kind of cancer and we would deal with the cost later. Mom and I had a great month and a half together before my surgery. God I loved having her with me. I picked her up at the airport with Abby, my Great Dane, in tow. We drove north to Maryland to see some friends of mine. That was one of the best weekends we could have asked for. Mom got to meet some new friends and we had an amazing time. Mom got to eat the first baguette in years that weekend. My friend Laura is also gluten intolerant and had gone to a gluten free bakery in Alexandria where they have mastered really good bread. Mom was in heaven! (Laura - My mother always loved you for that leftover baguette. She stretched it out for 3 more meals.)
For those who don't know my Mom, she is my very favorite person in the world. I miss her terribly. I can't wait to see her and Dad in a few weeks. Sadly Mom may not know me when I get there. you see she has Alzheimer's with Lewey Body Dementia. A most insidious disease combination. Alzheimer's is bad enough, but toss in the other and it takes the mind so quickly. Just 4 years ago Mom was great. She worried about memory loss but she wasn't diagnosed yet and was fully functional. She hasn't been in a home for more than 2 years and her mind and body are failing at an alarming rate.
So, back to having my mom with me for more than a month. She got me through surgery like a champion. She made me chicken soup after the surgery. I love my mother's soup. We cooked and laughed together. We took day trips and had an amazing time. I miss her so much. I hated to see her go back home but I know she missed Dad and he missed her too. Another thing I really love is that they have always had such a strong relationship. Dad didn't like to travel like mom did. He had no problem letting her travel when she wanted to. His trust in her was complete, as was hers for him. I wish I could find something like what they have. Their Love is beautiful to behold.
So, back to being cancer free. I know I am all over the place here, but you'll just have to forgive me for it.
January after my surgery I joined a study at the Medical College of Virginia. Mom was against it as it was more than a year long and she wanted me to live a full life and just move on from the cancer. Unfortunately I couldn't move on without doing something preventative. This was round two for me and once you have round two, you really want to do something to make sure it doesn't come back. Also the tumor was in a lymph node so the chance of yet another reoccurrence was quite high. I was terrified of doing nothing. After all I had done nothing for 2.5 years, look what that got me?
I met Dr. Poklepovic his nurse, Maria Quigley around the first of January of 2013. just a few tests later and I was accepted into the study. I was randomized into the into the high dose of interferon
I went into my first treatment January 14th, 2013. If you look back to my first posts in this blog, you can see how things went. Treatment was an adventure to say the least. I also firmly believe it was the best thing I could have done for myself.
While immunotherapy wasn't a picnic, I made it through and I am so glad I did it. I met some amazing people along the way. I learned a lot about my limits and I feel stronger than I have ever felt in my life. I am still working to get my endurance back up to where it was before treatment though. There is always room to improve.
this time next year I will be having a party to celebrate being cured. I'll be able to donate blood for the first time since 2009. I plan on making an appointment to donate October 24th next year. I can't wait!
Love and hugs for everyone!
Brenda
Thursday, August 25, 2016
I know, I know. I haven't posted in many long months. I am a terrible person, sue me. Life has kind of gotten in the way, I've been worried about my folks, and my brothers, my brother's wife and kids, and aunts, and uncles, and cousins, and friends. The list really does go on. Plus there is a small amount of depression associated with all of that worry and the overwhelming feeling that I can't get it all done. I feel a bit disconnected from my family. I live so far away and I miss them all. I am working on it. I'm getting back in contact with my therapist. I am slowly learning that I don't have to handle everything on my own. It is a surprisingly difficult lesson to learn.
O.K. back on target.
back on target Brenda. Right!
Dear Pok & Faith,
When you send in a request for a CT scan, they usually don’t approve the upper extremity which means they ask for more information and a peer-to-peer with POK. This is a pain in POK’s derrière so I have been trying to get them to get their shit together so POK doesn’t have to do this anymore.
It is my sincere hope that they learn how to toe the line and stop bothering you for more information on future scans. You should only have to do one peer-to-peer. After that it should be easy sailing. Sadly insurance companies don’t ever do anything the easy way. Their profits come from making life difficult for providers and their patients. They are filthy bastards and need to be put into Permanent-Corporate Time-Out!
To anyone out there dealing with health or medical crisis
and having to simultaneously deal with insurance;
GET A CASE MANAGER! I can not stress this enough.
Usually these people come from a nursing background so they have a
pretty good idea of what you are going through.
They understand the medical jargon and have been in the insurance
industry long enough to know who to call to get things resolved.
Since I changed companies in 2014 I’ve had a different
insurance company. No kidding, change
companies = change in insurance. Who knew?
For those new to this blog, feel free to cruise back through
to see what it is like to walk blindly through cancer treatment with the best
medical staff in the free world.
Seriously, these folks are amazing!
O.K. back on target.
I spent the better part of the last few weeks trying to get my insurance company to stop fucking up my CT scans. You'd think it wouldn't be so difficult as they happen every 6 months like clockwork. I get 5 scans each time. They consist of neck, chest, abdomen, pelvis, and upper right extremity - read right arm.
Pok orders the same scans he has been ordering for the past 4+ years. Since I've been with Integral Group, I love my company and the work we do, I've had United Healthcare Insurance. They have failed to approve all of my scans by the scan date. There is always one damn scan that gets hung up in the system. Twice I've had to return for that last scan the following week. This means 4 hours in the hospital waiting for the barium solution to be absorbed, get an IV installed, ride the CT machine with contrast pumped into my veins. The whole thing takes around 4 hours give or take half an hour. It really depends on how backed up they are.
You can imagine having to take off half a day in the midst of a busy schedule full of deadlines. Everyone has deadlines, everyone needs to work to pay the bills. I am lucky in that my bosses are cool with me having to take off twice-yearly to get checked out. This would be so much worse if I didn't work with cool and understanding people. Yeah, I get it. Not everyone is as awesomely lucky like me. I know you all wish you were, but I've got to say I am blessed in that way.
The last series of scans I had was mid-July. I get there and was informed that my upper right extremity had not yet been approved. I could stay and get the other scans and they would try to get the insurance company on the line to get that last order approved. This has happened for my last 4 appointments. Two years running it has been the same problem. So I got a bit frustrated and called the insurance company with no result other than added frustration.
I then called my HR department who got me in touch with another insurance person who asked me some really stupid questions and after being transferred a few times, getting really ticked off and yelling at the trees behind the building and generally being a Grumpy Gus, and probably irritating a few insurance customer service reps, I was finally assigned a Nurse Case Manager. Thank you Marissa for getting me hooked up! Again, I have to give a shout out to my HR Maven. She pulled out her special cocktail and got me my first ever Nurse Case Manager! I finally feel like this could actually be fixed.
I should have had a case manager when dealing with Anthem on the PET Scan debacle of 2012. Had I only known then what I know now!
She called me last week and we chatted. I told her how long this has been going on and she asked a few not so stupid questions and said she would call me back today.
My case manager is named Robin and she is really nice by the
way.
Today we spent the morning speaking with a variety of people with UHC, who then finally transferred us to CareCore. (If
you go to their website they are really part of Evi-L-Core)
We were then passed around a time or two to get high enough up the food chain to find out what was what. Sadly their computer disconnected me and Robin had to call me back after she got some more information out of them. A few things are happening to the CT orders on their end.
1. They don't have my full record, so they have no idea why my Dr. wants these scans. They are subcontracted to handle the approvals for scans without full knowledge of the patient's medical history. Seems kind of dumb to have someone review orders for scans without knowing why, doesn't it?
2. My Dr. needs to call, or have someone from his office call with additional information in lieu of faxing it in. Apparently Fax's sit on the fax machine and go nowhere. Why even have a fax machine then? They can't use E-mail as private patient information is being sent. So now my Dr. has to sit on the phone waiting in a que for a rep to pick up his call to take down information and give it to whoever is reviewing his request.
It really is a wonder that anything gets done at all with all of the bureaucracy imposed by insurance companies is murky to say the least. Equally troubling is that every insurance company does things differently. Hey, lets see if we can screw the medical world by requiring this information a little differently this week? Oh, hey, those guys are doing this too? Lets really screw with them by adding this step!
Robin asked me to do 2 things before our call next week;
The first of which is to find out what information is being
requested for the unapproved scan, and then call the benefits folks for my insurance company and let them know that I am part of a clinical trial. Sweet, I can do that.
I sent an e-mail to my Dr. and his Nurse, see below for excerpts from said e-mail. I've removed the information that could be stolen and used by people with nefarious intent, I hope. (I hope no people with nefarious intent read this blog. This blog is meant for nice people to get a look at what I went through with that Bitch Melanoma. Maybe I can help someone with what they are going through, or at the very least let them know that they are not alone.)
back on target Brenda. Right!
Dear Pok & Faith,
When you send in a request for a CT scan, they usually don’t approve the upper extremity which means they ask for more information and a peer-to-peer with POK. This is a pain in POK’s derrière so I have been trying to get them to get their shit together so POK doesn’t have to do this anymore.
Here is the gist of what they said.
1.
Don’t fax additional information in. Have
someone call it in. Faxing the additional information will cause a
delay. No one knows why, this is just what happens. Apparently if
you call, they’ll handle it immediately? Just deducing here, I have no
actual fact to back that last statement up.
2.
Figure out what they are asking for each time
and see if it is the same, then just include it in the initial request for future
scans. Maybe this will mean you can avoid having to deal with these
insurance morons in the future.
Robin also asked to add the clinical trial info with the
benefits folks. I called and tried to do so but was informed that
POK would have to do that. Their clinical folks don’t speak
with low life patients. We are, apparently, filthy and they are
definitely Germaphobic Ass-Hats with severe anal blockage. Or maybe the
insurance people just have a huge crush on POK and are
dying to hear his voice over the phone. I am sure they would faint if
they actually laid eyes on your visage Sir.
I am quite positive Faith, that you are just as amazing and
wonderful as Pok and can do this for him since he lacks the gene to multi-task
with the appropriate amount of sarcasm to make it Oh-So-Much-Fun. You’ll
have to add the sarcasm and have fun on his behalf.
It is my sincere hope that they learn how to toe the line and stop bothering you for more information on future scans. You should only have to do one peer-to-peer. After that it should be easy sailing. Sadly insurance companies don’t ever do anything the easy way. Their profits come from making life difficult for providers and their patients. They are filthy bastards and need to be put into Permanent-Corporate Time-Out!
Whew, I don’t know about you, but I feel so damn much better
now.
Peace, Love and Reiki Hugs for everyone!
Remember, you don't have to do this alone. Request a Case Manager!
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