CDC Symptom Diary Card

Monday, June 27, 2016

Fragrant Cold Pack Hack To Relieve Hot Flashes

I have been having hot flashes since 2008, ridiculous I know. I started having them in a severe way approximately 9 months or so before my diagnostic surgery. My bosses at work were a little perplexed at my sudden need to stand outside in the cold multiple times per day, HA.  I was told to "monitor" the situation because it could be early menopause.  Well, unfortunately it was not just early menopause.

So fast forward to the current day, summer heat and me trying to minimize my electric bill and you have one uncomfortable mama. So in the past 7 or 8 years I have tried many remedies to reduce or eliminate these disruptive hot flashes.  In addition to this cold pack I keep some cute oriental hand fans on hand to make the air around me breezy if I am not using a fan.

Hormone patches are a no-no for me because of my BRCA1 mutation. It is imperative to avoid them in order to reduce the risk of getting breast cancer. 

Hot flashes love me, they never want to take a break.  They arrive every hour or two, and come on with a frenzy if I am talking about anything uncomfortable, rushing to get out the door, or being active for any reason.  Exercising comes with all kinds of fun extra sweating.  I have night sweats EVERY night.  If preceeded by an anxious conversation or thought, the hot flashes are combined with nausea and panting.  Sort of a "fear" feeling that paralyzes me temporarily. My face turns tomato red and I sweat terribly. Yuck a wucka woo!

Otherwise I look normal. HA

So here are a few photos showing how I make this little neck wrap that is kept in the freezer at home. 

 I apply this directly to the back of my neck but if your skin is sensitive, you should cover this wrap with cheese cloth or a very thin dish towel/cloth to protect your skin from the direct cold.  

This fragrant cold pack feels GREAT on the back of my neck and speeds up the hot flash recovery time. I only need to have it on for a few minutes at a time. It works quickly.

If you are anticipating a hot flash coming on, place this on the back of your neck right away to lessen the severity of this unwanted experience (that is if you have time to run to the freezer) ;-)

This cold pack smells AMAZING!



Place about 1 cup of water in a stainless steel bowl.  Add just a few drops of Rosemary Essential Oil and Peppermint Essential Oil if you like.  Gently mix the oils and water together.




Place the clean large washcloth in the bowl to soak up the water and essential oil mixture. 


Wring out the washcloth and place it on a clean surface.  Straighten and then roll the cloth into a tube shape starting at one of the corners.  


Form the cloth roll into the shape of a horse-shoe and freeze.  Store in a clean ziplock bag once frozen for re-use. 

This fragrant compress will gently rest on the back of your neck when you are in urgent need of hot flash relief.  

I have placed a few links that provide some education about the benefits of Rosemary and Peppermint  Essential Oils.  You can use the essential or fragrance oil of your choice if you have any on hand, or no oil at all. It is up to you.  I recommend researching the oil beforehand just as a precaution.



I hope you find this cold pack helpful to provide some relief from those uncomfortable and sometimes intrusive hot flashes.  

Peace and Blessings,
Denise









Thursday, June 09, 2016

Energy Conservation: Its A Family Thing (or should be)

When I worked as an occupational therapist, several decades ago, one of the founding principals of maintaining independence with chronic illness was implementation of energy conservation techniques into one's daily life.  That would mean showing a patient how to complete an activity using less energy.  Back in the early 1990s it seemed a lot easier to talk about and incorporate these kinds of things into one's lifestyle because at that time our culture was not so focused on technological multi-tasking.  I miss the old days of giving 100% of my attention and energy to one thing, finishing that and moving to the next thing.

Multi-tasking is very exhausting and unfortunately for those of us in chronic states of fatigue, such as from cancer and its treatments, trying to keep up can be overwhelming.  When I am out in public, say at the store, I can sense the frustration from the person behind me in the check out line if I am not swiping my card fast enough or if I am moving my cart too slow.  Everyone else is running circles around me.  I want them to slow down and enjoy the day.  I want them to be more at ease and they probably want to slow down too.....but they can't because our culture demands that we do fifteen thousand things at once to be more productive.

So because cancer is a family thing, sometimes treatment can be a family thing as well.  In the case of conserving energy I highly recommend that anyone who may be directly involved with supporting your care learn about energy conservation as well.  It could benefit them by helping them conserve their own energy and also have more patience with changes.

I found a helpful this link about managing energy related to cancer fatigue:

Cancer Related Fatigue

Here is a scholarly article that may be of interest about energy conservation research:

http://soundideas.pugetsound.edu/cgi/viewcontent.cgi?article=1092&context=ms_occ_therapy

This all came to mind as a result of time spent on job searching.  I want to try working part time again, maybe starting at 10 hours per week. It would greatly help me with my living expenses.

My last part time job was very stressful and every second of my time was incorporated into a productivity metric. Companies nowadays are not enthused about letting employees pace themselves...ha.   I just cannot work in that kind of setting.

I am in treatment and will forever be in treatment.  Sustaining basic living will at some point be impossible unless I go into remission and regain a normal level of energy.  I trust in God that He has planned for me good things and as long as I keep Him in front I know I will be OK.

Today is a good day.

God Bless you


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!



Sunday, May 08, 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

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