Help Dondee Battle Cancer
Late last spring, in the midst of our kitchen flood and remodel, I had some lower abdominal pain. After palpating my abdomen, I found a large lump below my belly button. After a few doctor appointments and an abdominal ultrasound, it was determined I had a fibroid cyst. On July 21st, 2014, I went to the gynecologist who reassured me my situation wasn't a big deal - many women have these, treatment is a hysterectomy. Mine was large and I had two choices, laproscopic or open abdominal (a c-section minus the gift of a baby to care for). During our pre-op appointment, my doctor explained she thought I should go laproscopic because there would be a faster healing time, with a decreased rate of infection and I would lose less time off. I was ready to sign up until she said, "Oh..and I need to tell you there is a surgeon on the east coast who had this procedure..and hers came back malignant. When we do this procedure we use a morcellator ( a machine that grinds the uterus for removal laproscopically). With malignancy, morcellation increases your cancer staging and metastasis rate because it drastically spreads cancer cells. The MD on the east coast is on a war path to get all morcellators removed from the OR."
She went on to explain that 1 out of 40,000 women with fibroid cysts will have malignancy - this type of cancer is called Leiomyosarcoma. My doctor fully believed I would not be that 1 woman "You are so healthy, have no history other than the previous uterine ablation, I am not worried about you at all." I reminded her this came from out of nowhere - which is a red flag. She agreed but still encouraged me to go laproscopic. I told her, "No, It's not worth the risk - I prefer to go open."
Because she didn't believe it to be urgent, I wasn't scheduled until 2 months later. I didn't push because my kitchen was a nightmare, we were living in a hotel, and I wanted to work as much as I could, to create a cushion for the six week loss of work. On October 8th I had the surgery and all went very well. A week later, I received the phone call that the pathology results came back..."I am so sorry to tell you this, it was malignant...thank God you were insistent on not going laproscopic." My stomach dropped, I was in complete disbelief. With the snap of a finger, I was no longer just in recovery, I was now a cancer patient.
I immediately had a bunch of new appointments and tests; CT scans, Gynecological Oncology consults, Cancer Counseling, Genetic Counseling. They determined I needed a second surgery. During the first surgery, I elected to keep my ovaries because I was nowhere near menopause and I wanted to keep it that way as long as I could. With the new diagnosis however, the likelihood of metastasis is great and the ovaries are a logical place - they had to go. Three weeks later, I had another surgery. My surgeon tried this procedure laproscopically but unfortunately I had already developed so much scar tissue, I had to be opened again. Two C-sections in a month is brutal, not to mention, instant menopause on top of everything else. I keep telling myself all of these different experiences are simply making me a better nurse.
It feels very difficult for me to ask for support. I am a caregiver myself and have been so healthy, I never imagined I could be in this place. I have worked as an RN for 6 years, with the last 5 of those years as On-Call, a choice we made because of our young children. I wanted to be able to go on field trips, to chaperone away camps, to volunteer in the classroom or in their school, have holidays and summers with my kids. By being On-Call I had the best of both worlds as a Mom and an RN. However, this all meant I went without the benefits of sick leave, PTO (Paid Time Off) or disability. We had these things in place for my husband, but not for myself. I do not get paid unless I work. We have attempted to apply for short-term disability, but it has been denied due to now having a pre-existing condition. I am not eligible for disability for three years post chemo. Right now, I am not released to return to work until late April early May due to the high risk of infection in my area of nursing. We have been living on half our monthly income since October 3rd and if all goes well with my treatment, that will end in May. The medical bills and monthly expenses are quickly adding up. Our insurance doesn't cover all the extra modalities such as: mindful mediation for cancer patients, nutrition for cancer patients, naturopath oncology, acupuncture and massage therapy or reiki.
I was urged to create this account by friends and family who want to help. Every dollar counts for us, especially during the holiday season. If you cannot donate financially, please pray, wish, hope, sing, dance, chant, howl, meditate - whatever it is you believe - please do that for me and my family. And if you have friends or family elsewhere, please share this link and/or ask them to add my name to their prayer groups. I have someone praying for me on nearly every continent. I want that to keep going, so please spread the word and defeat this disease!
Thank you so much for all your love and support, it really does give me greater strength.
Its time for an update -
I had my second CT scan a week ago. All results were normal except for a questionable spot near the base of my lungs. I have been nothing short of a mess since then. An "Urgent" Pet Scan was ordered on Monday and this alone, threw me into a tail spin. I wasn't able to have it completed until yesterday. The wait is nothing short of lying on a bed of nails or walking into a hornets nest or treading in shark infested waters. I just received the call not long ago..
ALL CLEAR..ITS ALL NEGATIVE..NO CANCER CELLS IN MY BODY!!!!!!!
The questionable area was fluid build up from chemo..and already has decreased in size since the CT scan last week.
I have finally stopped sobbing enough to be able to post this. I have done my best to remain positive and calm..the meditative
breathing helped a ton...but the nag and inner scared voice was often loud in my ears. I chose not to share this news publicly because I didnt want to worry others needlessly..like my parents and my children...and I just needed to be still within myself.
So...I am now on my porch, enjoying the warmth and cool breeze, and exhaling in the biggest way. Please keep me on your prayer lists, keep me in your best positive thoughts, send nothing but light happy energy my way. I am forever grateful!! AND continue to share this story. Every week new people are diagnosed. Every week..women say, "I didnt know a fibroid could be malignant" EVERY WEEK! and they are young. This disease is rare but the statistic is shrinking. Sadly, unfortunatly, its becoming more and more common.
Here is to continuing on this path of strength and to a new, much improved, healthy strong immune system..for ALL of us.
Until October..if not sooner!
Much love to you all!
Its been a couple months now since the last infusion and about 6 weeks that I have been feeling better with more energy. My legs and hips continue to hurt/ache and I continue to have a little swelling, depending on what I am doing, but mostly I am on the up. I push myself to do more, its hard to have such a slow recovery, I have little patience as a patient! My hair is growing - I look like I am sporting the GI Jane look now more or less. Its coming in straight with lots of sparkle amongst the dark color. Right now I think there is more gray then I had before. Oh well, given what I have been through I am surprised its not all gray! My eyebrows and eyelashes are coming back in, and that makes me most happy. Its too hot for hats, so I am thankful my eyelashes are back to protect my eyes.
I am not back to work. I have a medical release for June but my employer informed me they no longer have a position for me, which means I am currently no longer employed. This may change at the end of summer, so in the meantime I am spending quality time with my kids, working on getting stronger and seeing what other avenues lie before me. I am doing what I need to do and simply not getting stressed out about it. I have a great supportive team that I have worked with for 6 years that I would love to come back to, so we shall see what is in store.
My kids are happy to have me back, getting back into mommy role has been fantastic - I am more tired but this makes me set stronger limits and say "Yes" to the things that really matter.
My next scan is in July..so unless something big happens before, I will be enjoying the summer with my family and figuring out my next steps. One of which may be to be a Leiomyosarcoma Patient Advocate. I have been asked to apply and have decided this would be a good thing for me to do. There is much to learn about this disease and its treatment. I learn best by doing it myself, plus being a nurse, its a natural fit. The training is over several days at Huntsman Cancer Institute in Utah this November. I have already been helping others as much as I can based on my experience and knowledge base so far, this would make me that much more effective. The training is covered by the LMS Foundation but the position is voluntary for 1 year. Volunteering allows me to give back - another goal I have set for myself. And knowing first hand the hysteria this diagnosis can cause, I am happy to help others navigate through.
So with that...
Here is to great mental health and a strong painfree body - for ALL of us!
Biggest hugs ever!
PS..keep me in your thoughts, prayers, well wishes..I continue to need all the positive love, care and energy I can get. I am not out of the woods by any means. These first 2 years are a strong focus...most telling. So keep me on the prayer chains and big wave of positivity!
PPS. Please continue to share my story. The statistic is shrinking on how many women will be diagnosed. The FBI is now doing an investigation on morcellation. Women and men everywhere need to be informed and educated on this. Please continue to share!
I had my follow up bones scan today..they just called.. AND IT'S NEGATIVE!!! NEGATIVO!! NADA!!
My hand is over my heart, I am deep breathing with huge exhales. I am so very relieved and am celebrating at the coolest coffee shop around!
Love you all...until next time!!
Dondee - She who is definitely in REMISSION!!!
In the meantime, my hair has begun to grow back. I have soft peach fuzz on my head. Where I had hoped my shaving days would be over - no such luck. Funny how body hair comes in faster then my scalp! I attended an easy yoga class today which was much much harder than I would have ever dreamed. My entire body is still so sore and so tight. Where I was once so completely flexible, I felt so awkward and unstable trying to do it. Afterward, I was so tired. My oncologist told me it can take a full year to feel normal again - I am now believing her. This process of healing, repairing, rejuvenating is one that requires a lot of patience resolve and will. I'm motivated and totally up for it however. I have no concern that I can't gain back and even further improve my physical fitness. I am just happy I can even go, let alone on my own without a wheelchair! That's major improvement right there!
I will keep you all posted on the bone scan.. please please continue doing what you are doing, with me in mind. Fingers crossed and prayers heard that it is NOTHING. and please don't forget to share my story - it's so important to continue educating and spreading awareness everywhere. Until next week!
Biggest hugs to you all!
Having had polio and experiencing scary things at age 2, like iron lungs and major disfiguring cases, I have been blessed from a very young age with compassion for anyone with an "ouch" of any kind. I have been subjected to ridicule and cruel rem arks from people that do not understand why one leg is smaller, why I could not perform as well as others in phy-ed, why I limp, etc. I totally understand your venting and it is ok. You are a strong woman!! We are strong women!! This too shall pass and know you understand disability! A horrendous way to learn it is to live it and yet it causes us to view life differently. I earnestly pray for you and yours!!!!! Cancer is NASTY in any form! My sincere love to you Dondee. You are on my m ind continually and Kelli has assured me you are a STRONG woman! I love you Dondee!! Phyllis
We have been blessed to have you in our lives! We will always be here for you no matter what! ALWAYS!!
Yay for last chemo!!!! To quote Billy Crystal, "You look MARVELOUS darling! :-) I think you rock the bald look. Sending big hugs your way. Love ya!!
Dondee, keep hanging in there! I know it is tough by your descriptions. No one would purposely put themselves through sheer torture, We are all here for you and your family. We love all of you very much, and the prayers continue with zest!! Keep on keeping on, and may the Lord bless you and give you peace!!
Keep hanging in there Dondee. I cannot understand the sheer torture of day to day life as I have not experienced it. I can understand a mom's feelings for her children and the grit it takes to go one day at a time and not only keep your self upright, but your family also. We love you and yours. May Gods blessings keep on coming in what ever form they are and give you peace!
If I had one wish in this world, I would ask that cancer be eradicated. You hang in there girl. This is one huge joint effort! My oldest sister, who was 77, had both breasts removed almost 2 years ago. Luckily, there was not a need for chemo or radiation. So far, so good for her. My heart is with you girl, and with your family. If I could take your suffering, I would. Continue to keep us posted!
Oh man! You go girl. I am big on prayer and I can assure you I am at it hot and heavy! Always will sweetie! phyllis
Ear!! Not war..ugh
I am so moved by all this love and support. I am blown away...and for all my beautiful friends who are choosing to be anonymous..I hope someday you will whisper in my war that you were one of them. We are so thankful. I cannot wait to pay it forward. Xoxox