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Sunday, May 22, 2016

Home Again-Single and Relocating With Cancer

What an ordeal it has been to move back home to Colorado! Exhausting for anyone and for me you can triple THAT fatigue. HA. There is no playbook on how to move when you have cancer and I think I can help you best by providing a few tips in this post. Trust me when I tell you that I could talk at great length about how I feel right now, not at home, but steadily the roots are beginning to take to the new soil.

I grew up here and came here solely for family, friends, community.  I cried many tears leaving Seattle and my loving and caring medical team.  I miss Dr. Heidi Gray tremendously, she was and remains my rock in this journey.  She knows me, she understands me as a person, in addition to understanding my cancer, she knows the minutia of what to ask and how to direct me.  I fully trust my new gynonc will be able to do the same, but I have moved from one family to be with my biological family.

My friends back in Seattle have been a bedrock of support, a base for fun, laughs, sharing and also helping.  I had these two neighbors, Judy and Rosie, who were like sisters to me.  We all helped each other with our cats, when we were sick and we took each other fun places, made memories and enjoyed learning about each other's families.  I have very special friends in Seattle, Bellevue, Gig Harbor and Shoreline.  I will miss my exhilarating walks with Joe and my teas with Colette, dinners with Kristine, Tad and little "V". I will miss mom's old neighbors who have become real friends.  I will miss my church, Sr. Giovanni and Fr. Shane.  I know my cat is missing all the trees and birds. I miss the winding roads, little shops and comfortable coolness of the air.  Thank you Seattle and Dr. Gray for keeping me whole, alive and here.  Thank you Lord for Life!

So here are a few tips if you have cancer and will be moving across state lines:

1.  Notify your gynonc/onc as soon as possible so that the two of you can work out a strategy for maintaining your treatment plan.  Reason being:  Insurance coverage probably will only begin on the first of the month and you should coordinate your move to be relocated by the first of the month for optimum care.  


The most important decision will be the referral to your new gynecology oncologist. I researched on my own plus my gynonc did some research as well.  Together we came up with the same new gynonc and I am very very very happy with the decision.  Allow yourself a few weeks or so to research on the web and even make a few phone calls to prospective oncologists.  This is daunting task. You need to make sure that they are accepting new patients. The first place I searched was the The Society of Gynecology Oncology  You may want to ask for advice in online discussion groups and local support groups in the area to which you are moving.  This decision sort of drives all the other decisions, at least in this case.

Once you are certain they are accepting new patients make a list of the new oncologist's accepted insurance and go from there.


Once you have your new oncologist then figure out which insurance you need to get. Obviously if you are on regular Medicare you will continue your coverage but your supplemental and prescription drug plans may need to change.  This is where the bulk of your energy and effort goes, the research and paperwork needed to get your health care coverage initiated.  I placed a call to State Health Insurance Assistance Program and spoke with a person representing the state to which I was moving.  I had to do this 3 times because I did get not get an important detail during the first call. These people are wonderful, volunteers who will listen to your story and help you get to the nitty gritty of selecting the best insurance option.  Even though I had to call 3 times, it was worth every second of my time. Make this call to get help with continuing your health coverage if you are not on a spouse's plan.  Be certain to ask the detail of when coverage is allowed to begin. Enrollment date and coverage beginning date are two different issues, FYI. 

If you are on SSDI you will need to notify SSDI and Medicare of your move as well.  You can contact them when you know your actual move date and they can enter it in advance. Do not do anything official until you are absolutely 100% certain of this date.  Enrolling in new supplemental plans require dis-enrollment from your existing plan and you do not want to dis-enroll too soon.  You want to keep catastrophic coverage available to you at a minimum during this transition.  Hence, fully understand coverage periods for new plans.  :-)  

Healthcare.gov is where you would go to search for insurance if you are not on Medicare or on a spouses's plan or your own company plan.  

I was in a medicare advantage plan in Seattle and it was extremely complicated to transition out of that kind of plan to a regular medicare with supplemental insurance coverage.


Get your checklist started very early. Most moving sites recommend planning to begin at least 8 weeks in advance, I say even earlier. Ask for discounts when getting bids on movers.  I unfortunately did not find many companies who offered help with moving for people who have cancer but I did take advantage of moving checklist apps and organization tips. There is however a group that supports the elderly for relocation: Caregiver.org which can be a useful resource for ideas.  If you are reading this and confirm a company that offers moving discounts to people with cancer, please comment so that I can publish their information.  It is much needed.


Here are two vital resources for help with cleaning and hotel travel. You will probably find yourself in a situation where you will need to be in a hotel during the move.  It is a very good idea, especially if you have a pet, like I do.  Marilyn is my therapy kitty. When I landed in Denver there was no possibility that I had the strength or mindfulness to go directly to the apartment complex and handle any leasing activities. I desperately needed sleep.  My body was a mess, I got very very sick with abdominal problems, headaches and nausea.  I needed a hotel for a few days in order to sign the lease and allow my body to recover because the new apartment would be completely unfurnished and I would have no food or a bed.

ACS Lodging Program Link: You will find discounted hotel accommodations 

Cleaning For A Reason:  This requires advance registration but having a professional clean for your move out will save you vital energy.  When moving out of the area, requiring EVERYTHING be in a BOX, the packing is endless.  Literally I never thought I would get it done. Let people help you pack and help you take things to be donated.  I know you don't want to bother anyone but let them if you can. I did get some help from friends with packing and thankfully my old landlord allowed me to leave a few things for the handyman to take away.  Thank you !!!

6.  Prescriptions:  

Please ask your doctors for extra prescriptions and also be sure to get a 90 day supply of all of your meds slightly before you move. This is very important. You may not be able to get appointments with new physicians and specialists right away.  Part of the reason for this is that you need your insurance coverage in place before appointments can be set, usually.  It is not like the old days when we could just call and bring insurance information with us.  So have your prescriptions filled with a 90 day supply, have extra prescriptions on hand and you will have one less thing to stress about.

7.  Scheduling Final Visits:  

Be sure to schedule a Final Visit with each of your specialties as close to your move data as possible, so that you can get their assistance with any last minute issues and concerns you may have. This will make the transition easier and they will be alert for the need to transfer records and treatment plans to a new provider in the near future.  This allows you to finalize your prescriptions and to firm up future treatment needs. Plus it is a nice way to say goodbye and thank your doctor for all of their kind care.

8.  Medical Paperwork and Records:  

Have a folder with print outs of visits with each specialist's visit summary on your person during the move to make the transition easier. Do not assume that your potential new doctors will have access to your electronic medical records. There are limitations and access restrictions. The staff may or may not be able to access your information electronically so carry on your person visit summaries with the latest meds, allergies, diagnoses and treatment plans.

Order your own records for your self, especially radiology reports. The new gynonc may want to have the original surgical slides in their office. They will tell you what they want and may order records themselves.  My records are extensive, to say the least. Be sure to ask the new doctors if they are ordering your records or do they want you to bring your records with you. Records are usually sent with the initial referral and additional records can be ordered after your initial visit.

Be sure you have important paperwork, such as DNR paperwork on your person as well. I know this is very sensitive, but you do NOT want to leave that kind of document in the moving boxes.  

9. Have a OneSheet that lists your old address and new address:

This sounds so basic but trust me, as a cancer patient with chemobrain, I cannot tell you how many times I started to forget the basics.  The fatigue is over the top when moving. Include on this sheet important contact numbers and itinerary information for your travel, movers, and emergency contact information. Have it on paper, not just on a phone that may or may not always have the proper charge.  

10. Plan time to say goodbye to your medical care providers and those who are important to you.

Saying goodbye was overwhelming for me. There is a strong tendency to procrastinate because we don't want to do this.  Thinking about what to write on a card, buying a card for that matter, can seem impossible.  What can I possibly say in a card that expresses how I feel about my doctor, nurses, friends, neighbors etc. As the one moving, pace this out, start early and plan as much as possible. I invited friends to do some things I had never got a chance to do.  I have no family in Seattle but saying bye bye to friends was heartbreaking.  I am glad I started early.  

11. Pace yourself and find peace with clutter:

I am single and have no person living with me to help carry the burden of moving.  I allowed myself to receive some help and I paced myself as much as I could.  There were some circumstances that did not allow for me to just hire someone to pack my stuff.  I had a lot of special sorting to do and most of the time was spent deciding on what should go where. Next time though, if anyone wants to just pack for me, you are welcome to do so. I spent several months living in a "mess" and this depletes energy.  

12:  Do not fly alone:

My regret!  If you are traveling via airplane to your new destination please find a friend or relative to fly with you.  I thought I would be okay to manage my luggage, the move out, my cat, the rental car etc on my own but I was not able to do so.  I got terribly awfully sick.  It was just too much.  Again, single people have these kinds of issues, sigh.  So find someone who can make that final leg with you to help out.  It will cost extra money so that is why it is a difficult request to make but I highly recommend it.

As the final days approach, save one box or drawer to place the paperwork you will take on the plane. Save another space for things that will go in the suitcase or suitcases.  Have some manilla envelopes handy, stamps, tape, scissors and pens in your suitcase too.  You will need those scissors to open the boxes...ha.  I also had what is called "the essentials" box clearly marked.  

Pack and sort your pills/meds several days in advance of the final move date. 

Invite a friend to be with you when you close the door for the final time. You will want a hug.

I did create spaces for packed boxes and sorting, but truthfully speaking things were constantly changing so piles had to be moved. Do relaxation exercises to lower stress. All you can do is all you can do. If you have an entire room you can designate for packing, do so because it will decrease the stress. 

I only had the energy to pack a few boxes a day so that is what I did. That also meant the messiness and disorganization lasted longer. HA. Now I am settled and stuff that went to family is now with family. My stuff is all unpacked and I feel free. Be patient and know the move will be over some day soon.

What we don't talk about is that when I save something now I am saving it for the future of someone else in my life, to carry on for the time I am no longer here. That is why it took forever to pack.  It isn't just about the standard move "if you haven't used it in 6 months it goes" kind of thing,  NO...this is about "is this something I want my niece or nephew to have, or my sister or brother to have?"  It is dang depressing.  But also freeing to make some of those otherwise 'final" decisions.  

I feel blessed that I had the luxury to be able to move with having cancer. Many people do not.  Sadly, many pass and never get the chance to go through all their things ahead of time like I did.  I am grateful for that. I have everything I need and made myself a new little home.  It is decorated to give me happy and warm feelings, and can be a place of inspiration. A place of peace.  I set it up so that if I were confined here I could be happy.   

May you find some of these tips handy.  God Bless you!



Saturday, May 07, 2016

For Mother's Day

I am sharing a post from the past, about Thanksgiving.  My mom was Thanksgiving to me in so many ways.  It was her favorite holiday.  In honor of my mom I will share this reflection from a few years ago.  

May our Blessed Mother bring you strength and comfort knowing our Lord loves you completely.  I love you mom and miss you enormously.  See you up in the heavens.




Love,
Denise


Thursday, May 05, 2016

Servivorgirl's Movie Pick for 05-05-16 is Dolphin: Spy In A Pod

Hello All,

I watched a funny and joyful Netflix movie last night that I just had to share.  I am sharing with an intent to help those who are having a difficult time sorting anything out because of their cancer or side effects.  If you are not aware, when on heavy chemo we tend to get numb to our surroundings.  The simplest task of choosing a movie can be difficult when you feel foggy, nauseous, sad, angry or anxious.  It can be a challenge to follow a storyline. More importantly we may just need a lift. 

 When I was on heavy front line chemo nothing really interested me.  Seriously. Especially meaningless movies or television.  I did not have the brain power to read and it was, and still is important to find activities that induce relaxation and give us a source for laughter.  So as part of a balanced life when undergoing treatment we need exercise, nutrition, healthy relationships, spiritual health and also healthy relaxation activities.

So if you are looking for a movie that brings back that sense of wonder you had as a child, watch "Dolphin: Spy In A Pod".

My selection for today is Dolphin: Spy In A Pod

"Dolphin: Spy In A Pod" is just a joy to watch.  Their happy smiley faces, antics and noises will give you the warm fuzzies and giggles you need to relax your mind.

Happy Mother's Day weekend as well.
I think my mom would have enjoyed watching this with me.  I miss you mom.  See you up in the heavens one day.  I love you. My special thoughts are with those who have lost their moms.

Peace and Blessings to all.  May you find comfort in the Lord and in our Blessed Mother.  Happy Mother's Day weekend to everyone.

Love,
Denise

#servivorgirl
#servivorgirlmoviepick
#mothersday

Wednesday, April 20, 2016

Missing The Pacific Northwest -Great Video From Joe Hendricks

Now that I have relocated back home, to be with family, I appreciate even more the memories of the Seattle area and its surrounding beauty.  I have a friend up there, Joe Hendricks, who is an avid climber and lives in adoration of our Lord.  He frequently posts photos and videos of his great adventures in the pristine forests along the shores of the Puget Sound or up high in the Cascade or Olympic Mountains.

Here is a beautiful clip, birds singing in the background bringing us to the beautiful waters in the Sound.  It is a great escape, a mini trip away from any anxiety you may feel today.  It's like therapy.......ha!

You are pry wondering why I cling to this beauty. It is because it is very peaceful being in those lush enchanted forests.  I only went on a few short walks with Joe but they are treasured in my heart.  I hope you subscribe to his 'You Tube' channel so that you can be alerted to see all of his upcoming endeavors.

I am just settling into my new place in Colorado.  I grew up here in this beautiful Rocky Mountain state and am looking forward to a mini drive up into the hills soon. I miss the fragrance of the evergreens and the views up along the Continental Divide.  My family is here. My family is the most important part of my life with God always in the forefront of each moment of my existence on earth.

I am going to miss Dr. Gray so much it hurts to talk about it.  She has referred me to a top gynonc out here and I look forward to meeting him and resuming my Avastin treatments as soon as possible.  Insurance transitions are a bear......but it will all be just fine.  My blood pressure is rising quite a bit and that is probably due to the Avastin. My fatigue is ridiculous and I have had lots of stomach issues.  All part of living with cancer  and the treatments but I thank God I get by each day independently enjoying its ups and downs.

Note to remember:  If you ever transition from a Medicare Advantage plan to regular Medicare, remember that Medicare coverage begins only on the first of the month.  Keep that in mind if you have the ability to schedule a move.  Not everyone at Medicare knows this and when you call to find out these details you may not get all the information.  It all will work out OK, I will only have a short delay in treatments.  Nightmare...........Ha.

Here is the video.  Enjoy!


Peace and Blessings

Wednesday, February 24, 2016

Johnson And Johnson: Talcum Powder And Ovarian Cancer Lawsuit

Johnson and Johnson has been proven to have known that talcum powder was linked to ovarian cancer and the company did not warn consumers. WOW.  For those of us with ovarian cancer this is sad news, big news, angering news......stunning.  For me personally I don't yet know what to make of it.  
I used baby powder in my teens, 20s, 30s and 40s.  I never knew it was actually dangerous.  How many products actually have talcum powder?  Is it on or in most feminine hygiene products?  It is not a surprise that any company would hide this kind of evidence or information from consumers when their bottom line is threatened, especially cash cow products like baby powder or the infamous "Shower to Shower".  I worry about young women and teens especially.  Being a female takes a lot of work when it comes to hygiene, it just does.  Powders were supposed to be helpful, not harmful.  Wow, this is devastating in so many ways. 
WHAT EXACTLY DOES THIS MEAN FOR ALL OF US?  

God Bless the Fox family for being persistent with their lawsuit against Johnson and Johnson.  
I am linking two articles today that show some details or links to important research for your benefit.  We are learning together.  
1.The Fort Worth Legal Examiner: 
"J&J Slammed in Baby Powder Death Lawsuit"
Shezad Malik MD JD February 23, 2016 2:49 PM
2.Medscape author Nick Mulcahy:
"J&J Must Pay $72 Million in Talc Powder-Ovarian Cancer Case"
Nick Mulcahy February 23, 2016
Quote from http://www.medscape.com/viewarticle/859275 In 1982, Dr Cramer was the lead author of the first study ever to link talc use with ovarian cancer. He has since been involved in multiple studies on the association, the latest of which was published just a few months ago (EpidemiologyPublished online December 17, 2015). He also testified at the Johnson & Johnson trial as a paid expert witness.
"I'm still absorbing the news," Dr Cramer said today. "A feeling of vindication is tempered by the realization that thousands of women continued to use talc products and died of ovarian cancer after my first study in 1982."
Peace and Blessings
#Servivorgirl
Denise Archuleta

#ovariancancer #TalcumPowder #whoknew #ovariancancer