Sad

I was supposed to graduate today.

Last November when I had a week to decide on a hysterectomy during the hardest term of college in my life I knew that plan was in serious jeopardy. I ended up having to take the rest of the term off and repeat the classes, which meant it wasn't going to be possible. I was split from my study buddy who I did everything with since we were forced together on one of our first group projects (there were many) of our program.

Being split up and being the one left behind was hard. Being the one not at graduation was harder. Next year will be great! I have other friends that will be there and that will be wonderful, but I'm still bummed.

Don't get me wrong I'm so proud of all my friends who graduated with their CNM (certified nurse midwife) and FNP (family nurse practitioner) degrees today. I guess I'm just having a little pity party because I so wanted to be with them so badly.

Our school is based out a tiny little town in the south eastern corner of Kentucky. It is built into a mountainside and is the center of an amazing and rich history. There is something magical about Hyden, KY. I can't explain it and honestly, if I hadn't been there myself I wouldn't believe anyone else, but it's true. There is something healing about it for me and I just wish I was there "circling up" (a tradition with my school) with my friends, well, family actually.

I guess I should tell you a little about the history of my beloved Frontier Nursing University.

 

It all began with a woman named Mary Breckinridge who was born into a wealthy family. After marriage and the loss of her two beloved children and finally a divorce, she decided to travel to England to train to be a nurse midwife. After her training she moved back to Appalachia and used her knowledge to start the Frontier Nursing Service.

This was a group of midwives that would literally go out on horseback to serve the poor and under-served women and families of Appalachia. These women had some of the poorest perinatal statistics in the US and the work of the Mary Breckinridge and the Frontier Nursing Service changed everything.

An article about the Frontier Nursing Service in the June 14, 1937 issue of LIFE magazine (I have my own copy if you ever want to read it)

Letters to Mary Breckinridge from Queen Elizabeth the 2nd

They kept impeccable records and statistics. As I mentioned before they served the women and families and began the concept of family nurse practitioners. They would bring vaccines for the entire family with the recognition that if they really wanted to help moms and babes they needed to treat the entire family.

The Frontier Nursing Service spawned the Frontier Graduate School which 30 years later became Frontier School of Midwifery and Family Nursing and sometime in the past 2 years while I was a student eventually became Frontier Nursing University.

The program like many nurse-midwifery programs these days is a distance taught program. We are required to go to an orientation session before starting classes called "Frontier Bound" and another before starting our clinical orientation called "Clinical Bound." Frontier Bound is essentially a 3 day orientation and bonding session and Clinical Bound is a week-long intensive do or die learning session with a lot of blood, sweat, and tears and bonding. Some of the people that I went to Frontier Bound with I also went to Clinical Bound with, but honestly I have met a lot of Frontier sisters (and a few brothers too...but not midwives) through my journey and I have made innumerable friends.

I can't explain the bond I have with these friends. Some of them are as close to me as my best friends that I have had for years. I can talk about anything with them and talk about nothing with them. We've considered moving to different states to live together and work together. Last year when I finished chemo the first time, the weekend of Geoff and my 5th wedding anniversary, my study buddy and her husband drove from Indianapolis to celebrate with us (btw our husbands had never met before this).

This same friend and I met in Illinois this past May to drive together to Nashville for a midwifery conference. We stayed in a VRBO (vacation rental by owner) mansion that another FNU sister found and arranged the rental of. There were 14 of us and it will go down in history as the best slumber party EVER!!!

When I was first diagnosed with cancer I told my FNU sisters before I was able to get ahold of Geoff. When I have had recurrences I've looked to them for support before telling the rest of the world. Even last week when I had the lung scare, I put a message out for support before getting my CT scan and before I had my scan I had nearly a hundred messages of support.

We are a sisterhood. I am a part of something I have never had before. I know I am loved. They commissioned a piece of art for me. For me!!! It arrived the same week as I went to Surf Camp last month.

It is symbolic of support and healing. It has been titled "Circling Up." The banyon tree is the symbol of our school and the branches in this piece of art are supposed to symbolize the support I am getting from my friends and family. The stone below me is my rock, Geoff, and the two vines connecting us are E and Ella. The posture of me is symbolic of me in a fetal position and growth, healing, and rebirth as I reflect on my own mortality. The henna on my hands and belly is a blessing of safe passage through this time..

The piece itself is stunning. The idea it was created just for me blows my mind. The thought that went into it is even more mind blowing.

In reality I just wanted the opportunity to be with my sisters this weekend and frankly again, next year. It's been a bittersweet day for me as I watch with the pictures on my Facebook feed. I'm so happy for them and they make me smile and occasionally they make me cry. I read a book about the Frontier Nursing Service that one of my preceptors (also a Frontier alum) gave to me to the kids as bedtime story tonight. I told them next year I would take them to meet the "Angels" (the midwives) in the story.

I also watched the video that all of us FNU students have seen about a thousand times...and then I watched it again with Ella...and then again on my own. I cried each time...because I can literally feel my sisters there with me, singing along, and holding hands. 


It's In Every One of Us

I also can hear Kitty Ernst, one of the original Frontier Nursing Service midwives, and the founder of the distance learning program telling us to go out there and change the world. She has high expectations for each of us...no joke.

Melissa and I with Miss Kitty

In the meantime, I've decided that as soon as I'm done with my midwifery program I'm going to do the extra clinical hours to get my WHNP (women's health nurse practioner) too, so next year when I finally go to graduation I'll being celebrating dual degrees. Also, I'm planning to be happy and cancer free.

Wish List

I have been asked repeatedly for a wish list, esp. with Christmas presents for the kids.

I have said I would write one while internally debating if that was actually asking for help again which I said I would not do. In the end, I was asked one too many times and I have decided to share our wish list. I do have cancer after all, and technically if I listen to what I'm told and not what I feel this could be my last Christmas (though this is NOT the plan!!!).

Before I actually give my list I want to state that I/we are doing well. We are doing much better. Financially things are by no means fixed, but there is a long term plan and thanks to many of you things are so much better which ultimately reduces stress and makes emotionally and even physically so much better. We have even had a little extra money so that we can do things such as take advantage of a friend of a friend's discount and buy a Bitty Baby American Doll for Ella for Christmas.

Definitely not a necessity I know, but I always wanted an American Girl Doll as a child and I vowed that I would give one to my little girl someday. Then I get cancer and I'm not sure I will have the chance to see her grow up with one of the historic dolls, and I couldn't afford to buy her the baby doll right now. A friend of a friend was gracious enough to offer her discount so once we had our bills paid we allowed ourselves a little to do things like make sure this dream comes true.

It doesn't just end there...Then a friend of these two (the original friend and the one that shared her discount) anonymously bought clothes and a book for Ella's Bitty Baby with the stipulation that we would share pictures from Christmas morning. I got an email that warned me ahead of time that any "extra" American Girl packages were not in fact a mistake and I just cried and cried, then I got the package and I cried more. I called Geoff and I called my mom and then I looked through it all again and again. I have to say it was the greatest Christmas present for me, and hopefully Ella.

I despise cancer and I'm getting to a point where I'm really really sick of this being a part of my everyday life. It's been over a year and I've been in treatment almost the whole time except for 3 months when it was thought that I was in remission, but even in those 3 months I didn't feel well and I was in and out the clinic/Emergency Dept./etc. Honestly, it's depressing. Winter was really really hard for me last year and now that I know what I'm up against, it's hard facing the onset of winter again.

I'm not giving up or evening thinking about it. I'm just trying to regroup. I'm trying to figure out how to stay positive when overwhelmed with cancer. I'm trying to make sure that I live my life and cancer is just a part of it, and not what dictates it. More than anything, I'm doing what I've tried to do all along...Realize that there are a lot of good things that come from cancer and to focus on those aspects.

We have been so fortunate and dare I say spoiled by all of you. I want to make sure to share that so no one thinks that we are just trying to milk our situation for all it's worth. We know that there are other families out there that haven't been as fortunate and personally, I don't want to take away from their needs.

Ultimately though people are going to do what they want and if some of you wish to help us, then we will graciously say thank you (and probably cry). You have no idea how much this means to us and hopefully you will never be in a situation where you need to know.

Also, I have to say thank you to the person who read my blog post before Geoff's bday and anonymously bought him an iPad mini. He loves it (maybe more than me?)! :)

So here is the list...
*a small pack of size 5 Huggies Diapers (we mostly use cloth, but sometimes we cave and use disposables...esp. if traveling)
*Huggies wipes
*Paper towels
*Toilet paper
*Tidy Cat Kitty Litter
*Cat treats
*Bird Seed-I really love the birds (so do our cats, dogs, and kids), but I really really love filling the feeders and watching what comes to visit us
**Unpaper towels-yes we are that crunchy
**Planetwise bags-we love these! We esp. need zipper bags (we use them for lunches and snacks in the car)
**Cuisinart Juice Extractor-you can get it anywhere, I just knew Kohl's had it and they have coupons/discounts

Kids:
Oompa Toys-we have a wishlist here with toys that go along with things we already have
Legos-E LOVES any and all Legos
Magformers-the greatest toys EVER!!! Everyone in our house big and small loves these toys...usually cheapest on (I'm embarrased to say this) QVC website...we have two sets over the years and would love more!!!
Fulfilled: An advent calender-Playmobile, Legos, Chocolate, whatever
**E's big request this Christmas: "a remote controlled helicopter," preferably orange (no, I don't even know where to get this) "or a fire truck"

Addendum: I received an email this morning telling me I could add a wish list to Hanna Anderson (one of our favorite brands of kid's clothes), so I did...apparently it's through a registry site so I can add from any other website too, but if you would like to help with kid's clothes here is a list of suggestions...I added a few silly non-kids stuff too
Kid's clothes wish list

 

Big Ticket:
The Great Wolf-A night or two at the Great Wolf Lodge in WI Dells
The Osthoff-A night or two at the Osthoff or even just some time in the spa...esp. reiki treatments
Fulfilled:  New cordless phones-our landline phones are dying and never seem to work
New brakes for my car
A vacation ANYWHERE!

Take this list as you will. We don't expect anything to come from it, but it was kind of fun to think up what we would love to have...

Cancer Support Resources-Updated 11/6

(quick update:) My original list didn't even include Gilda's Club Madison bc apparently I take it for granted. I was horrified when it was pointed out to me that I forgot to include it because it is such an important resource for anyone affected (in any way) by cancer. I honestly, don't know how we used to survive without Gilda's. 

I have also added a few other resources suggested by others...Hope this helps!

(Original post begins now:) About a week ago I read an email from a woman who is 32 weeks pregnant and was just diagnosed with a very advanced cancer. Initially I was going to email a resource list to her, but then I thought about all the friends I have made because of cancer and how many people are affected by cancer directly and indirectly, and I decided that even though my resource list is not the most comprehensive I may be able to help others by sharing it.

I've continued to think about this and I even started writing this blog post. Then this past week I was at Gilda's house and one of my cancer friends announced that he and his family are in the same predicament as we were in my Help post. All I could think was how badly I wish I could give him and his family a large sum of money and make all their troubles go away...but since that isn't a reality for me and my family at this time I thought harder and listened more...He talked about needing a fundraiser and wanting a fundraising web site that didn't take a percentage of people's donations. He talked about doing research with his free time and energy (which believe me is another resource that he and I both wish we had more of) and I realized that I could help him in this way.

As I said, this is by no means a comprehensive list and there are many resources that are specific to the type of cancer I have, but I want to share the resources that I know about. Many of these are ones I just learned about, and many I wish I would have known about long ago...I want to make sure this list is available for someone else, so please share with your friends and family who might be able to use it. Also, if you know of other resources that I should add to this list, message me and I will update it.

Finally, this list is also a great list for those looking for a charity to support...My favorites would be First Descents and Gilda's Club Madison but I will let you decide for yourself what you think is best.

The two organizations/websites I wish I would have known about from the beginning...

Gilda's Club Madison

Our mission at Gilda's Club Madison is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. Not only does Gilda's Club offer support for those with cancer, but it also provides support for the entire family throughout their entire journey with cancer. Gilda's Club is truly a place where people, young and old, can share their experiences, questions, and feelings while sharing a cup of coffee, playing in the kids’ Noogieland area, participating in support groups, taking part in lectures such as “Your Skin During Cancer Treatment” or workshops such as “Relaxation & Guided Imagery" as well as a variety of social events from Spring Potlucks to Game Nights. ***Personally, I don't know what we (my entire family) ever did without Gilda's Club. I mean it!***

My Lifeline
MyLifeLine.org is a 501(c)(3) nonprofit organization that encourages cancer patients and caregivers to create free, customized websites. A patient – or a friend or family member like yourself – creates the site and invites guests to visit and participate in the online community.
Functioning similarily to a blog, each personal MyLifeLine.org website is designed to serve many critical functions of a strong, supportive community:

1. Stay informed about your friend's health and well-being on the My Updates page.
2. Share encouraging messages and photos on the Guest Messages page.
3. Learn about your friend's specific cancer type and treatments on the Learning Links page.
4. Volunteer to help with tasks on the Helping Calendar.
5. Share a smile on the Laughing Medicine page.
6. ***Also, supposedly allows you to set up a fundraising page where no percentage of donations is taken

Non-financial Support
YouCaring 

In just 3 steps, easily create your own site to raise money online for personal causes & life events. No fees, easy & secure. YouCaring is a free fundraising website created for individuals wanting to raise funds for medical expenses, memorials and funerals, education and tuition assistance, adoption fundraising, funding for mission trips, pet expenses or animal rescue and helping another in need. - See more at: http://www.youcaring.com/#sthash.VzFZU2Nv.dpuf

In just 3 steps, easily create your own site to raise money online for personal causes & life events. No fees, easy & secure. YouCaring is a free fundraising website created for individuals wanting to raise funds for medical expenses, memorials and funerals, education and tuition assistance, adoption fundraising, funding for mission trips, pet expenses or animal rescue and helping another in need. - See more at: http://www.youcaring.com/#sthash.VzFZU2Nv.dpuf

In just 3 steps, easily create your own site to raise money online for personal causes & life events. No fees, easy & secure. YouCaring is a free fundraising website created for individuals wanting to raise funds for medical expenses, memorials and funerals, education and tuition assistance, adoption fundraising, funding for mission trips, pet expenses or animal rescue and helping another in need. - See more at: http://www.youcaring.com/#sthash.VzFZU2Nv.dpuf

Easily create your own site to raise money online for personal causes & life events. No fees, easy & secure. YouCaring is a free fundraising website created for individuals wanting to raise funds for medical expenses, memorials, and funerals, education and tuition assistance, funding for mission trips, pet expenses or animal rescue and helping another in need.

Cancer Support Community (aka Gilda's Club in some locations)
Cancer Support Community is dedicated to providing support, education and hope to all people affected by cancer. Its global network brings the highest quality cancer support to millions of people touched by cancer.

The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Likely the largest employer of psychosocial oncology mental health professionals in the United States, CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone. - See more at: http://www.cancersupportcommunity.org/MainMenu/About-CSC/Who-We-Are.html#sthash.7zGQBz8L.dpuf

The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Likely the largest employer of psychosocial oncology mental health professionals in the United States, CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone. - See more at: http://www.cancersupportcommunity.org/MainMenu/About-CSC/Who-We-Are.html#sthash.7zGQBz8L.dpuf

The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Likely the largest employer of psychosocial oncology mental health professionals in the United States, CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone. - See more at: http://www.cancersupportcommunity.org/MainMenu/About-CSC/Who-We-Are.html#sthash.7zGQBz8L.dpuf

The Center for Patient Partnerships 
An educational program through the University of Wisconsin Schools of Law, Medicine & Public Health, Nursing, and Pharmacy that provides free advocacy services to anyone with a serious or life-threatening illness, regardless of income or residence. This is a great resource that I highly recommend!!!

Share The Care 
Share The Care™ is a detailed step-by-step model that shows people HOW TO:
• Create a unique caregiver "family" from friends, relatives, neighbors, co-workers and acquaintances.
• Answer the question all your concerned neighbors and friends have asked. "How can I help?"
• Hold a meeting that will transform and bond a group of ordinary people into a powerful caregiver team.
• Organize the team using a simple, easy-to-follow system, seven guiding principles, and 23 forms that guarantees every job will get done and no one person will have too much to do..
• Uncover the hidden talents within the group, make the most of their resources, cope with group issues and stick together in the face of adversity. 

Lotsa Helping Hands 
At Lotsa Helping Hands, Help is our middle name. We connect people through the power of community — whether you need help or you want to provide help. You may be caring for an ill loved one, an aging parent, a child with special needs or a veteran. You may want to volunteer to help a friend or others in your neighborhood.  

Family/Financial Support (some of these may be region/cancer specific)
 The Someday Foundation 
The Someday Foundation was created by two high school friends who experienced first hand the loss of family members to cancer.  Realizing that while individuals are facing many challenges from a recent diagnosis, life still goes on. What The Someday Foundation strives to do is assist with the "everyday" things and relieve some of the pressures that come with that. 

Kwik Trip Neighbors-Helping-Neighbors 
The Neighbors Helping Neighbors Program is funded by people in the community making contributions at coin boxes on our store counters. Neighbors Helping Neighbors distributes funds for individuals/families (within the community) who have experienced a disaster, medical-related hardship or have a pressing financial need.

Modest Needs
Modest Needs is a registered charity that promotes the self-sufficiency of low-income workers by helping them to afford short-term, emergency expenses.

Tricia's Troops
Through this program we focus on the practical concerns of living with cancer and help to enhance the quality of life during the journey. To achieve this we provide limited financial assistance and free services to help cancer fighters address the non-medical, cancer-related challenges that impact their daily living. Based on the unique circumstances and needs of each individual, we may offer support and service coordination in the following areas: home cleaning, care and maintenance; transportation; child care; meal support/grocery delivery; respite care; wig/cosmetic concerns; fitness/massage and more. 

The Dawn E. Petersen Foundation
The mission of the Dawn E. Petersen Foundation, Inc. (DEPF) is to support families living with serious illness. We have chosen causes that we know Dawn would have loved to support. With the Foundation's fundraising efforts we will support life enhancement grants, pre-paid gas cards to traveling patients, Kathy's House in Milwaukee, WI and other projects as determined by our Board of Directors.

Ovarian Cancer Community Outreach 
Assist individuals with financial support to offset the costs of cancer treatments and other expenses when diagnosed with ovarian cancer or undergoing treatments for ovarian cancer (and other gynecological cancers).

Net Wish
The Net Wish is the brain child of a successful Philadelphia area businessman who wishes to remain completely anonymous. The only motive behind this site is to help the less fortunate in our community and absolutely no tax benefit is received for the Wishes fulfilled. The specific focus of Netwish is on how the aid will help children, older adults and other vulnerable members of our community.

The Sarcoma Alliance 
The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support. Hand in Hand: The Suzanne Renée Leider Memorial Assistance Fund was created to support sarcoma patients in finding the treatment they need. Hand in Hand offers financial assistance for second opinion consultations by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses. The mission of the Sarcoma Alliance Peer-to-Peer Network is to facilitate positive relationships between individuals affected by sarcoma so that they may find emotional support, encouragement and information.

Young adults with cancer
Brenda Mehling Cancer Fund
The Brenda Mehling Cancer Fund (BMCF) supports patients ages 18-40 as they undergo cancer treatment. It provides services to meet daily needs that are not covered by insurance. Typical grants cover $500 worth of medical co-payments, rent and mortgage, transportation, car insurance, repairs, and groceries.

Sy's fundSy’s Fund is here to help young adults with cancer by funding their creative passions, pursuits, and hobbies as well as integrative therapies such as acupuncture, reflexology, and therapeutic massage.

(my personal favorite resource) First Descents
FIRST DESCENTS offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.

Nurses with cancer
Nurses House: A National Fund for Nurses in Need

Nurses House is a nurse-managed, non-profit organization dedicated to helping registered nurses in need. Our history begins in 1922, when Nurses House began to offer nurses a place to rest and recuperate at a Long Island, NY beachfront mansion, donated by Emily Bourne. As times and needs changed, the property was eventually sold and Nurses House became a national service program. 

Many of the pages listed above will have their own list of resources...This one is from 

General Cancer Information American Cancer Society: Choosing Treatment Facilities and Health Professionals BMT Support Cancer and Careers Chemo Care Chemo Cargo (Chicago Area) Cleaning for a Reason Evolife iCANcer app Know Cancer Love Hope Strength mAss Kickers Foundation Manage Cancer My Cancer Advisor National Cancer Institute: Dictionary of Cancer Terms National Cancer Institute: Drug Dictionary National Coalition of Oncology Nurse Navigators Resource page Patient Resource Guide Think About Your Life Advocacy and Survivorship 1 Up On Cancer Free life coaching guide & audio: Alive and Authentic After Cancer Treatment: A Guide for Cancer Survivors National Cancer Coalition for Cancer Survivorship Navigating Cancer Survivorship Caregiver Support MedTrakker - Notebook to Organize Medical Information Clinical Trials EmergingMed Clinical Trial Results from Cancer.gov CenterWatch Cure Launcher National Cancer Institute: Clinical Trial Directory Complementary/Integrative Therapies Complementary Therapies - National Cancer Institute Guide Geffen Visions Journey Through Cancer - Buy the Book on Amazon LifeSpark- Energy Therapy (Denver) Summit Cancer Solutions (Denver) Emotional Support 4th Angel Cancer Care Cancer Support Community Cancer Information and Counseling Line (CICL) Geffen Visions International - 7 Levels of Healing Imerman Angels Lance Armstrong Foundation Share: Self Help for women with Breast and Ovarian Cancer Sharsheret: young Jewish women living with breast cancer Financial Information Co-Pay Relief Clinical Trials and Insurance Coverage Financial Assistance Resources from the Patient Advocate Foundation Government Health Care Portal People Living with Cancer: Financial Resources Raymond Wentz Foundation (Colorado) Verna's Purse (Financial Assistance for Fertility Storage) Humor Therapy Comedy Cures Jest Health Chemorella (Quimiorela) Hair Loss & Wigs The Good Wishes Scarves Program The BeauBeau Head for Cover Headcovers Unlimited Just In Time Wigs and Hair Covers Donation Service (UK) Kids with Cancer Alex's Lemonade Stand Children's Brain Tumor Foundation Joseph's Journey American Childhood Cancer Organization Camp Mak-a-Dream Gabby Krause Foundation Hope Street Kids Kids Konnected Wigs for Kids LGBT Resources National LGBT Cancer Network Nutrition American Dietetic Association Cooking with Cancer Cancer Research Foundation of America Managing Eating Problems During Treatment Seniors with Cancer Senior Care at Care.com Specific Cancer Types Association of Clinical Oncology Cancer Foundation - Search 120+ specific types of cancer American Brain Tumor Association Bright Pink Breast Cancer Resource Guide of Massachusetts Colon Cancer Alliance Colorado Breast Cancer Resource Guide Cholangiocarcinoma CURE Ocular Melanoma Love Me..Love My Journey Melanoma Research Foundation Mesothelioma Pink Ribbon Survivors Network Ready for Recovery Breast Cancer Planner Transportation and Housing During Treatments Joe's House Patient AirLift Services Treatment Resources Chemo 101 Jeans Cream Young Adults with Cancer The Cassie Hines Shoes Cancer Foundation First Descents Fertile Hope Hope For Two I'm Too Young For This! Cancer Foundation LIVESTRONG™ Young Adult Alliance ReproTech, Ltd. Fertility Preservation Network Rise Above It (RAI) Planet Cancer Ulman Cancer Fund for Young Adults Winning the Fight - A Survivor/Caregiver's Story Young Survival Coalition - Breast cancer Canadian Resources Canadian Cancer Society

Tough Cookie

Today was a hard day for us. 

It was a chemo day and we started off with our usual Friday routine. Get the kids off and sneak in a quick stop at the dog park after dropping off Ella. E didn't actually have school today so we allowed ourselves to sleep in a bit, thinking it would only set us back a half hour or so. In the end it was more like an hour and seemed to really upset the kids more than anything so we won't be doing that again.

The dog park was great except that it was COLD and Geoff only wore a T-shirt. I wore a jacket but I was cold just looking at him and Wilco, our wiener dog, was shivering too, so we kept it very short.

We had just enough time to drop off the dogs at home and grab our chemo stuff and head back out the door. I had labs done as usual when we arrived and then I headed off for my chest X-ray. It took maybe 5 minutes total so it was no big deal. We got to chemo on time, but they were full so we had to sit in the waiting room for a half hour or so.

When we finally got a chemo bay it took awhile to get to get everything set up. I feel bad because I was a little crabby and I had a new to me nurse. She didn't deserve my attitude and I wanted to apologize before I left but I didn't see her again.

A friend and former co-worker of mine came to visit with us and brought us both cards...a funny, mood brightening card for me and a funny birthday card for Geoff. She may have also included a paper gift that she shouldn't have. It was really nice and a definite bright spot to the day. 

Well, that and seeing Geoff play with his new iPad mini from his birthday that I got to give him thanks to  an anon gift giver. It was the greatest to be able to give him what I knew he really wanted. I have a hard time really taking any credit for it, but I'm sure happy to take pleasure in watching him with his new love.

So back to chemo...the visit with my friend was cut short because I was barely able to stay awake after having Benadryl. My eye lids were heavy and I think I must have been dozing off because I saw her and Geoff commenting on it. I was fighting it with all I had, but I guess it wasn't enough.

After that I slept. I woke up once to go to the bathroom and went right back to sleep until I woke up to a couple people entering our cubicle. I opened my eyes and saw my Nurse Practitioner and one of my favorite oncologists. My first reaction was drowsy and I was happy to see them both and then it was immediately followed by a thought that I probably should not have voiced out load the same way as it went through my head "if you're here, it's bad news isn't it?"

They both looked at me with these looks that confirmed my suspicions and grumbled about how they always have to be the duo giving me bad news and that it was even worse in their minds because I was sleeping so comfortably.

So the news...The chest X-ray was of course, abnormal, but inconclusive. This led to a stat chest CT a few minutes after I was finished with chemo. The concern was that I had cancer that metastasized to the lungs. I had the CT at 4pm. The worst part was I wasn't thinking and I let the chemo nurse deaccess my port so I had to get another IV placed for the CT.

I talked with my NP in person for a few minutes afterward the scan because she is amazing and goes above and beyond what she needs to do and then we headed off to pick up the kiddos. By the time we picked them both up my oncologist called with the results.

The CT results...The CT showed a small inconclusive mass in my lungs. It is likely that it is cancer but it is currently too small to really know. Since I have only been on chemo a few weeks (today was my 4th week, or 1st complete round) it is too soon for the chemo to really do anything. The plan is that we stick with the current treatment regimen through my next scan in a few months and then if needed we can reevaluate. There is question if the cough I have had is just related to the probable upper respiratory infection that I think I have had or this, likely I had an infection and this isn't even causing symptoms at this time.

Regardless it was a good scare for us today. We were genuinely freaked out and still are. The news still  isn't exactly what I want to hear, but as Geoff sheepishly stated "man, you are really gearing up for quite the comeback, aren't you?" Is there really any other choice? I think not! As one of my lovely school mates stated (after i secretly confided in them for support to get through yet another scan) "you are one tough cookie!" Yes, yes, I am.

The latest

So I realize it's been awhile since I last wrote. I've wanted to write every day, but these past few weeks have been completely insane for me. We have had a lot of stuff going on and every time I thought I was going to have some time to rest, there has been a birth or a friend visiting or some other completely fun adventure that seems to trump rest. It has been pretty amazing and fun!

In addition to all the births and other adventures we had a garage sale last weekend. Well actually, my mom had a garage sale for us. In lieu of chemo Geoff tried to help her on Friday and we all helped on Saturday, but it was still nuts. I can't even remember what else happened last week except that on Saturday we were very fortunate to add a new addition to our household...my oldest niece.

Tara is 23 and moved here from Indianapolis. She had an interview set up for Monday and today started her first "real" job as a drafter. We are so proud of her and happy to have her with us. Unfortunately we weren't organized enough to have her space ready for her so we are still working on that, but she has been a good sport!

Other than that, I'm doing pretty well. I have had mostly good days with a few not so good mixed in. I've been running like crazy and I suddenly realize that I'm really tired, but I think I've been doing great. I have some neuropathy (numbness/tingling) in my feet and some nausea, but otherwise, the chemo hasn't been too bad. My cough/URI never really went away and seems to be increasing so on Friday I'm going to have a chest xray before chemo. Personally, I think it is just my upper respiratory infection lingering.

Other than that, things really are going well. I'm happy to say we have been able to pay our bills and it takes a lot of stress off of us! Geoff's bday is tomorrow and as a true procrastinator I'm still pondering what to do for him to make his day special. If we weren't in the situation we are currently in it would be so much easier to just buy him the iPad mini he has been wanting or to plan a weekend away with him, but considering our circumstances I have to be so much more creative. This is good though because I appreciate the challenge...if only I hadn't waited until the last minute!

Today Ella is home with me because she has impetigo, a contagious skin infection, in her diaper area. She can go back to daycare tomorrow, but today we get to have a second girl's day (she was sent home yesterday). We have had fun today except for a major battle over naptime. I have come to the conclusion that Ella and I are both stubborn and too much alike...It makes me laugh, but I do have to throw in that in the end, she did end up with a nap.

Thank you.

I have so many things I want to say right now and I'm not sure I have the right words or enough energy. I apologize ahead of time if this turns into some incoherent jumble of words.

Today was the second round of the new chemo routine. It went fine. On the odd weeks I get a cocktail of meds, and on the even week I only get one of the chemo meds. Of course it is the one that seems to cause more side effects and has the potential for a nasty medication reaction, so I have to take a large dose of oral steroids for the first three treatments. Each time the dose decreases, so last week I had to take 5 Dexamethasone pills 12 hours and again 6 hours before treatment. Today it was 3 and 3, and next time it will be 2 and 2. I also have to take IV Benadryl with each treatment. Originally I was supposed to take 50 mg IV (for the majority of you that don't know what that means...that is a whopper of a dose!). I can easily sleep for 12 hours if I take 12.5 mg (or half a normal Benadryl pill). Geoff and I were both concerned that 50 mg would be WAY too much for me and jokingly told them that they would have to put in a breathing tube (intubate) me if they gave me that much, so now I get 25 mg IV each time.

Usually I'm asleep within minutes of them starting the bag that they put the Benadryl in, but today the social worker came to visit us. We talked to her once before a long time ago. She is very nice, but even though I am a nurse and I wouldn't hesitate at getting social work involved for one of my patients, I have a hard time initiating it for me. Geoff asked to see her the first time and this time we saw her because my super wonderful NP read my last blog post.

Shortly after I posted the Help post my NP called. She took care of talking with the social worker and giving her the link to the blog post and more information about me, so together they could find grants and resources that may be of help to us. In the long run I am very hopeful that this will help. We talked more about social security disability and she reaffirmed that we should do it and even if we do the paperwork now it will likely take 5+ months before any checks come in. In the meantime I will have to work even less hours which I have very mixed feelings (mostly guilt) about. Geoff thinks I should do it because working has been hard for me and another thing to keep up with. I feel guilty because it is ingrained in me that I should be working and helping my family instead of putting my energy into school, but in the long run I know school will pay off and it is where my heart is right now...after my family, of course.

As I said the meeting with the social worker was very good. She came just as I was starting chemo and she was there when I got my dose of Benadryl. I could feel myself getting sleepy, but just like a certain 2 year old I live with I convinced myself to push through it and stayed awake for the rest of the meeting. By the time we were done I had about an hour of chemo to go and I wasn't feel as tired (this is likely from the steroids which in theory have the opposite effect). We distracted ourselves by watching tv on our newly gifted NetFlix account (thank you Michelle and Shannon!!!). This is ultimately our favorite way to pass the time at chemo...watching tv or movies and having "chemo dates" which essentially means we get time to watch something without the risk of small children demanding our attention every 2 seconds.

After I finished chemo today we decided to make a quick stop at Target to pick up a few little things. Once again I reveled in the fact that I could walk through the store without little children and this novelty gave me a little burst of energy. I particularly enjoyed walking through the Halloween section (one my favorite holidays) and trying on silly hats without someone yelling "let me try!" or "are you going to buy that?" or "me! me! buy that for me!" Ahhh, the simple pleasures of life. Also, I didn't have anyone screaming that we needed to buy Halloween candy nearly a month early so they could try to figure out where I hid it and eat it. Nope. We will be waiting until the last minute for that!

Finally I realized that my energy level was crashing and I was getting really crabby. I was getting annoyed with poor Geoff for walking too close or trying to hold my hand or walking too far away and not helping me. He couldn't win and fortunately I still had the foresight to see how impossible I was being. I apologized as best as my mood would allow and recommended that it was time for us to head out. I used part of an electric gift card one of my friends gifted me the other day (thank you Olga! works really slick!!!) and I whined my way back to the car.

Geoff suggested and actually stated that he would prefer if I fell asleep on the way home because in his words I was getting "belligerent." We both giggled and eventually I did. We made a quick stop at the house to do a few things and then headed out again to pick up the kids at the last minute.  After that we had dinner together and when I could tell things were headed south again I excused myself to go lay down. This is when I decided I wanted to write a blog post before falling asleep.

It's been hard for me to write lately because once again I haven't had enough time or energy. I've been tired, sick, and stressed. I've explained most of the stress, but there is always more that I don't explain...school, kids, pets, schedules...I had an upper respiratory infection for the past few weeks that peaked last week and made me absolutely miserable. I slept every chance I got and lived off Robitussen. All of this made me feel even more guilty because I felt like I was dumping on Geoff who is by this point exhausted and then I had to start chemo again.

The port is doing well and usually doesn't both me much. It is supposed to essentially feel like a triangle shaped lego under my skin and possibly look like it too, but this time it isn't "as" noticable and so far only two of the bumps can be felt. This leads me to believe that it has already moved from being straight verticle to slightly tipped back at the bottom. Hopefully this shouldn't be a problem, but I'll be honest with my history, I'm a little skeptical. Today when it was accessed it flushed fine, but then it didn't have an immediate flash (this means blood return). I immediately turned my head to the left out of habit (this helps) and the flash came. The next time they tried to get a flash it was immediate, so hopefully it is fine.

The upper respiratory infection (URI) was cause for concern last week, but they decided I could still get chemo. The deal was if it lingered then I had to let them know and get a chest radiograph. I willingly agreed. The URI lingered over the weekend and by the beginning of the week started to clear up until today. Of course today it was back with a vengence. Geoff thinks this is because now he is sick and he thinks he gave it back to me. Personally, it doesn't matter to me, I'm annoyed. I didn't have a clinic appointment today, so I decided to wait until Monday and if it doesn't go away I'm going to call. Right now it's just an intermittent annoying cough, but I'm hoping it doesn't affect my weekend too much because one of my old roommates and best friends and her family are coming to visit. Oh, and I have a couple mamas that are due anytime that I'm on call for...and I already missed a birth the other night because I slept through the phone call (this is one of those times when I'm both mortified and eternally grateful that I'm just the student!).

So, the latest chemo...I was hoping it wasn't going to have much for side effects for me and I could keep functioning pretty well. I'm not sure how much of how I've been feeling is because of the chemo vs. the URI, but I have had a lot of bone pain. My hips and ankles hurt BAD! It makes me need to take pain meds around the clock and crave my heated blanket. Netflix will be a lifesaver as a distraction these next 6 months! The pain makes me nauseous, so it can be a vicious downhill spiral if I'm not careful. Last week I lost 7 lbs in a day and 5 more the next. I'm sure I'll gain it back, but it was a little scary and it gives you an idea of how crummy I was feeling.

The low point of my week was all the financial concerns I mentioned in my previous post. That post was the hardest thing I have ever written, but I think the people that have read it, realize that. The flip side is that my low point quickly turned into a high point. We are overwhelmed by the outpouring of support and love. I'm still worried, but most of my fears have been quashed and any doubts I had in humanity are completely dissolved!

It's hard at times to know that everyone knows your dirty secrets, even complete strangers. I have never had so many people read a blog post before. As of today, it had over 1000 hits. I don't have that many Facebook friends. In fact, Geoff and I combined don't have that many. I know that it has been shared beyond the people I know and we have had complete strangers give to the giveforward account and send us checks. I wish there was some way I could hug everyone who has cared enough to help.

Within hours we had multiple offers for Netflix and sleeping bags for E. I didn't know what to do. Finally I decided that the person that offered a sleeping bag first was the appropriate person to respond to, but before I could do that someone else bought sleeping bags for both E and Ella and dropped them off at E's preschool. It's been like this for everything. Someone else paid for a week of aftercare for E and left Target giftcards...Someone else left another giftcard today and that's just preschool. I only know the person that did the sleeping bags, all the other gifts were anonymous surprises and I am clueless. I had no idea that people at E's preschool even knew about the blog and wow, what community!

Today we had someone else that I used to work with when I was in my early 20s (and I was still an immature jerk) send money to cover the tabs for our cars. Again, I'm completely overwhelmed, and unsure how to acknowledge all this amazing goodness without feeling like I'm bragging. I'm just so happy...I've had to explain to E and Ella multiple times in the past 24 hours about crying when you are happy. It's such a relief to know that I will be able to take care of simple basics and pay bills.

I had a friend that has cancer email me and tell me how when she had her last surgery she just kept waiting and hoping someone would offer to help. She really wanted someone to help clean for her, but no one ever did. I know exactly what she means. That is what I usually do and from what I can tell it's what everyone around me tends to do. Geoff and I feel guilty because we have heard from so many people how badly they are hurting financially right now and we wish everyone had the outpouring of support that we have seen. We know everyone's situation is different and we've been dealing with the frustration and humiliation of cancer for well over a year a now.

Every time we have a plan of how to help ourselves things fall apart again, and people don't see that side. I started working at Madison College last February and Geoff took a second job teaching at ITT Tech. Between these two jobs we were confident that we would make enough to pay all our bills and even have enough to set aside a small emergency cushion. In only a few weeks I was diagnosed with terminal cancer and had to start treatment all over again. There are so many reasons this news was devastating and difficult to process, but for me one of the hardest was the financial impact. I couldn't work the hours I had anticipated which meant I wasn't making the money I needed to and all I could think was what if I die and leave Geoff with debt and unable to pay the bills.

It's a really painful and difficult journey. I'm 36. We have two small kids. We really try to not live beyond our means, but life doesn't always work with us and in this last year plus, it has definitely not worked with us. This past 24 hours has been the first time that I have really felt ok. In fact, the night that I wrote the post I slept like a baby (that was the night I slept through a birth call). It was such a relief to come clean and an even bigger relief to know everyone cares and wants to help in whatever way they can. Ok, again I'm worried I'm gushing too much and I'm concerned that there are those reading this and needing the same kind of help (though I hope not).

I need to get some sleep, so I'm going to wrap this up with those two little words that seem incredibly insufficient to me right now...thank you! I love all of you.

Help

I'm crying as I begin to write this because I don't know exactly what to say or how to say it, just that I need to say it. I hate asking for help. It doesn't come naturally to me. I'm the kind of person that wants to push through no matter what and keeps stubbornly telling myself that it is better if I just do it myself.

I relate it to the concept of extra credit in school growing up. Everyone likes extra credit. To me extra credit is all those offers of love, support and help that I don't have to solicit. On the other hand, if I ask for help it is only partial credit. I don't like the term partial credit it makes me feel like I didn't try hard enough or in this case, I would rather be prideful and see what I can do on my own instead of asking for help.

It would be a lot easier to spend this entire blog post writing about my feelings about extra credit and partial credit instead of actually getting to the point. Everyone keeps telling me to let them know how they can help or if they can help. I always say "oh, of course" meanwhile I think to myself I'm never actually going to ask for help. This is where I prove myself wrong.

We need help. I don't have the energy to work enough hours and make enough to pay our bills. We are scaling them back aggressively, I promise...today we are giving up cable tv (we might keep the very basic cable so our tvs work, but that's it) and our gym membership, but the benefits of the cuts take awhile to kick in. We held out on the cable tv because it helps when I'm feeling really crummy. It helps distract me and it helps with the kids for a little bit, but in reality, we have realized that we can do netflix for a lot less in the long run (note: we have not signed up for netflix at this time).

I feel extreme guilt about school. I have had a lot of people question why I don't just give up school and I'm sure it doesn't make sense to many others. I know I shouldn't have to explain myself, but I'm going to briefly. I am almost done. I have done all the classes. I have a paper to write for a non-clinical class and then clinical work. I have over 300 hours towards my required 675 clinical hours. This is my dream. This is so important to me. There is more that I can't explain here like how the entire time I have done this program it has been a struggle with my own mortality and strength, or how much all of my family has given up to support me. I've had endless discussions about this topic with Geoff and my parents and my friends and the decision is always the same...I need this. I need to do this. Even if I am going to die, I want to die knowing that I finished my Midwifery degree. That I made it. That I have my masters degree and that I wasn't a quitter. I'll go so far as to say this is one of my dying wishes. It about so much  more than me. It's about what I believe in and what I want to be in my kid's eyes. It's about the example I want to set for them.

That being said, I have currently given one day a week to clinicals and two to work, and another to chemo. It's a full week. I'm on call all the time when I'm not at chemo or work and I plan to pick up as many hours as I can handle with the UW Midwives. I've realized that I'm struggling with energy and I'm scared knowing that we are going into fall and winter where the days are light shorter and much colder. The cold doesn't work well with all the chemo in my body. In fact, it directly affects my energy.

I've decided in the last week that it is time to give up my pride to social security disability. I absolutely hate this, but it is what it is there for. I have someone helping me figure out all the work to file it, but even so it will take months to process it all. Hopefully, once it is all done that will be enough to make up the difference we need, but for right now every day is a struggle.

Yesterday I was thrilled because I could pay our mortgage for September. On the last day of the month. We used to have it scheduled on the first. It's so hard for me to admit just that. Then to admit that today we had a phone call telling us that our cell phones were about to be disconnected because we hadn't paid our bill yet, so we scheduled a payment for our next payday, but we aren't sure it will be enough. Meanwhile I'm driving around with expired license plate tabs and I think as of today Geoff might be too. I'm not reveling in the fact that I'm breaking the law, instead I'm freaking out every time I see a police car because I'm sure that this time I'm going to get a ticket that I can't afford and is just going to set me that much further back from paying for my tabs. Geoff actually got pulled over on the way to pick me up from the airport (when I came back from CA) and got a verbal warning for the tabs and a tail light that was out...the police officer said the combined ticket would be $300.+ It makes me cry to just think about it.

There are so many other things...I need to pay utilities and the farrier for Aggie. We are constantly juggling money to pay for daycare so I can work, finish school, and go to chemo. I don't know how other people do this. Or maybe it's that we've had to do this so long. We've had a lot of extra credit help along the way, and it's always been enough...but as of this past weekend it was a year anniversary from when I finished chemo the first time.

I hate that this is what my life has become. I miss the days of signing my kids up for fancy extra Little Gym classes. I can't even buy the required sleeping bag that Ephraim needs for naptime at preschool now. We put up a good front though or so we try.

This post is the true reality. Cancer is humiliating in so many ways. This is just another way. I can't tell you how many times I've thought about how unfair this is. That above all the other losses from cancer that I have to give up any sense of financial security or any fun money to have a carefree day with my kids. Honestly, it's bullshit! Excuse my language, but it's true.

So here is how you can help...

target, grocery store, gas gift cards-any amount
subway, jimmy johns, chipotle gift cards-any amount
send a check...even $5 is greatly appreciated
set up a fundraiser...a pancake breakfast, another giveforward account, whatever, I don't care...
anything else you want to do...

I'm not going to post anything like this ever again...It's too hard and takes too much from me. I can't even begin to imagine other people's reactions...all I envision is everyone thinking I'm being greedy or irresponsible and I don't even have words for how horrible it makes me feel.

I'm trusting that my vision isn't reality and that people aren't laughing at our misfortune, but I can't explain how hard it is to come out and actually admit that we need help, badly.