It has been almost exactly 5 years since my world was turned upside down with the words “It’s cancer.” In those years, there have been many things that sustained me: my family, my friends. I know I’ve written extensively about how my girls in YSC have held me up and helped me keep it together.
But another thing that helped me through this hell-ride of cancer survivorship is the voices of other bloggers with cancer. Through the magic of the interwebs, we were able to find each other, encourage each other, and be there for each other. These voices, I could recognize from just a couple sentences of their writing, but in many cases, I could easily pass on the sidewalk without recognition,
because we never met.
Last night, another one of those voices was silenced. Lisa Bonchek Adams died because of breast cancer.
It’s a little confusing for me. Despite all these deaths I’ve experienced over this handful of years, I still haven’t learned how to appropriately grieve, to mourn these women who, for a short while, traveled this same bumpy road with me. How do I mourn someone I only know through facebook exchanges, and blog comments?
But I’m making this about me. I’m furious and sad for children who were separated from their mother, for her husband, for her real-world loved ones, as well as all the lives she touched with her words.
But she will live on through all the lives she touched. She will live on through her words, her blog, so I will close this with a quote from Lisa:
“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”
I just returned from a quick, four-day trip to Washington D.C. for ProjectLEAD with the National Breast Cancer Coalition.
Coincidentally, my daughter’s kindergarten class has been learning about Washington D.C. in their social studies segments. She wanted me to be sure I got my picture taken with the President.
I got this close.
The White House is beautiful at night.
Our schedule for this trip was very tight: 7:30 am to 7:30 pm, so I did not actually see daylight, with the exception of one quick run to Starbucks, and then the cab ride back to the airport on the last day. But I wasn’t there for sight-seeing or picture taking, we had much more important things in mind.
I’ll be posting much more on this project in the near future.
How did you tell your kids about the cancer diagnosis?
We used the local Gilda’s club
How did your kids respond?
It was a very positive experience
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
I kept their routine as normal as possible
Did not give them too much information
Let them asked questions if they wanted to know more
Kept very open lines of communication
Used a lot of professional help- Gilda’s club and local help from my hospital with this
Is there anything you wish you’d done differently?
No
Do you have concerns about the long term impact of your cancer on your children?
Yes
What advice would you give to other moms who are diagnosed with cancer?
Don’t give your children too much info
Cancer is very scary for children.
Children process info VERY different than adults. Let them ask questions (if they have any) and follow their lead
What concerns or fears troubled you the most?
How did my diagnosis and treatment impact my children
How did you deal with those fears?
Time will tell
Have those fears and concerns changed over time?
Yes, As more time passes-I think about this less
What was your darkest moment?
Mental breakdown and depression 18 months after diagnosis
What was your best moment?
Every day (including today)
I love my life and my family and still think I am a very lucky person!!!
I am blessed
What did you do to take care of you? How did you splurge on yourself?
My husband put me first. Everything just fell into place: Whatever I needed – I got – whenever I needed it.
Were you able to get help from friends and family members while you were going through treatment?
Yes- I have an amazing group of friends
You know the statement-it takes a village. I have a village.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
Very difficult. It is very humbling. Especially when you are used to doing and not needing.
Did cancer/treatment impact your relationship with your spouse/partner?
Yes, Not in a negative way. I fully understand how much my husband loves me. As I said- I am a very lucky person
Do you have any relationship advice for young moms dealing with cancer?
Be honest.
What is something you wish your friends and family members understood about your cancer and its impact on your life? What would you tell the friends and family members of other mom’s diagnosed with cancer? What would you want them to know about what she’s about to go through, and how best they can support her?
Just because you look ok on the outside- it doesn’t mean you are ok on the inside.
Cancer is not like strep. You are not better in 5 days. It can take awhile (even years) until you are ok.
How did you tell your kids about the cancer diagnosis?
Stage by stage: chemo: “I have cancer in my breast and need to take medicine to make the cancer go away. The medicine is called chemo.” “I’ll go to the doctor a lot and might get tired. You’ll still go to school everyday. We’ll have dinner together every night….” surgery: “My doctor is going to take the cancer away in a surgery. When I come home, I’ll be sore and have boo-boos.” We practiced ways we could hug and snuggle that wouldn’t involve my chest – hand hugs, leg hugs, finger hugs. radiation: “I have to go to radiation every day. Radiation is a lot like having an x-ray. Remember when you had an x-ray after….”
How did your kids respond?
My kids were young enough that they didn’t associate cancer with death. They took it in stride and asked many questions along the way. We answered them all honestly. Sometimes they complained that I didn’t always go to swim class with them or other things that they were used to. Sometimes they worried about me, tried to take care of me by getting blankets or food for me. Mostly, they just went about their normal routines.
I think that surgery was the hardest for them. At diagnosis, I had just stopped nursing my 2 year old. He was still quite attached to my breasts. When I showed the kids my scars, he said “no more babies can drink from there anymore. I don’t like it!” They have gotten used to my flat chest and scars now. My oldest even asked why all the mannequins at Victoria’s Secret have breasts. “Not all ladies have breasts!”
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
honesty. I think my kids would have been more scared if they sensed things were different but didn’t know why. We also kept their daycare providers in the loop. We told them the exact language we were using to describe what was happening to me so they could use it too.
Is there anything you wish you’d done differently?
In terms of the kids? No.
How did the impact of cancer change as time passed, and your children grew? Did it change?
My kids still talk about it some. They play “cancer.” One kid pretends to have cancer while the other pretends to be a friend bringing over food. They take care of each other and say things like, “I’m sorry you have cancer. Would you like a leg hug?” Occasionally, something dramatic happens. My oldest recently had a nightmare about a witch plucking out all of my eyebrows and eyelashes. Clearly, it has had an impact. We just keep talking about it.
Do you have concerns about the long term impact of your cancer on your children?
Yes. Long term, I worry about a recurrence, about dying, about leaving my husband with 2 boys to raise on his own. I hope though, that this was just another experience among many in their childhoods. It will, no doubt, impact them. I don’t want it to dominate them though.
What advice would you give to other moms who are diagnosed with cancer?
Tell your kids, talk about it, don’t hide it. Secrecy causes more fear.
What concerns or fears troubled you the most?
that my biological son will get cancer
How did you deal with those fears?
deep breaths, reality checks
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
We were already fostering our oldest at diagnosis. We have since adopted him. The process was a little more difficult because of cancer.
What did you do to take care of you? How did you splurge on yourself?
regular spa visits, acupuncture, many dates with friends and hubby for movies or tea, parties
Were you able to get help from friends and family members while you were going through treatment?
Yes. I practically demanded it. The day I was diagnosed I emailed about 100 people. I told them what was happening and that I would need them. My friends then set up committees and divided duties into categories: food, childcare, chemo buddies/medical appts, housekeeping. We used Lots of Helping Hands to keep everything organized. When I needed something, I just contacted the key person for the appropriate category and it materialized.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
No. I knew that if I didn’t ask for help all of the burden would fall on my husband and mother.
Did you have an online resource that helped you through this experience?
Type of Cancer: Stage II right breast cancer.
2 out of 15 nodes +. TNBC, BRCA1+
Stage at Diagnosis: Stage 2
Treatment Plan: Have gone through surgery,
chemo (6 rounds of TAC). Radiation and more surgery to follow
How did you tell your kids about the cancer diagnosis?
We were very up front with our girls. We used a book to show them what we were talking about. We were honest about all of the treatments and surgery. It was horrible for a few days… but it made it a lot less scary for them when each step occurred. The teenager was actually a little more difficult… she hears cancer and automatically thinks death. It took lots of sit down talks with her
How did your kids respond?
The little ones cried the most when I told them I was going to lose my hair. I had very long thick hair and one of their favorite things to do was play with it and style it. The teenager sobbed off and on for days…. and again when we hit any of the numerous “bumps” in the road
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
We involved the little ones as much as they wanted to be involved. We had a head shaving party and they got to shave it with clippers. They wanted to be involved with dressings and drains too so we involved them as much as possible. Let them pick out scarves.
Is there anything you wish you’d done differently?
Not really. I do not regret for a day being as open and honest as we were
How did the impact of cancer change as time passed, and your children grew? Did it change?
I am still in treatment so a tough one to answer. I have had multiple complications with wound healing and have had 4 hospitalizations. Those are tough on the girls because usually Mommy is always there
Do you have concerns about the long term impact of your cancer on your children?
None… other than the fact that I am BRCA1+ which means they could be as well. Me having breast cancer has turned them into amazing, compassionate, strong girls
What advice would you give to other moms who are diagnosed with cancer?
Be as honest as possible. Kids are amazing, adaptive little people. They will read things off of you. If you are open about it, they will normally be open about their feelings. I would tell my girls when I was afraid of something and would at times cry in front of them. This showed them that it was okay to be afraid and cry. Although, I kept my major meltdowns for behind closed doors
What concerns or fears troubled you the most?
Recurrence or my children having the gene
How did you deal with those fears?
One day at a time… it’s all you can do
Have those fears and concerns changed over time?
No
What was your darkest moment?
Leaving my family vacation to be hospitalized…. also leaving from the hospital where my daughter had pretty significant surgery to go directly to another hospital to be admitted for almost a week
What was your best moment?
When I see my kids brag about their mom. when they tell me that I’m beautiful bald and shouldn’t wear anything on my head. My 6 year old chose me for “hero day” at school. I am in the Army Reserves… she asked me to come to her presentation bald with my uniform on. She cried when I walked it she was so excited to share me with her friends and teachers.
Do you have suggestions for other women considering a post- cancer treatment pregnancy, surrogacy, or adoption?
I had a prophylactic total hysterectomy 4 months prior to diagnosis. So, unfortunately I have no recommendations
What did you do to take care of you? How did you splurge on yourself?
Taking care of me has been the biggest struggle. I allow myself time to cry and cope with everything going around. I allow alot more time snuggling with my girls.
Were you able to get help from friends and family members while you were going through treatment?
Somewhat. I don’t have much family in the area, but I had a few friends that were absolutely amazing during treatment
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
Like many women I am my own worst enemy in asking for help. I am a nurse which makes it worse. I am also in the military so am used to being completely independent. My husband, family, and friends stopped waiting for me to ask for help. They just showed up when they knew things were rough. I knew if I told them I didn’t know how I was going to do something…. one of them would be right there
Did you have an online resource that helped you through this experience?
Facebook YSC page was great. American cancer society. I had a case manager through my insurance with a direct line and email
Did cancer/treatment impact your relationship with your spouse/partner?
Yes. Although we have an amazing relationship and have managed to make the necessary changes to our relationship to make it as great as possible under the circumstances
Do you have any relationship advice for young moms dealing with cancer?
Let him see you cry. Let him know that it is ok for him to cry. I have been on both sides of the fence… having cancer and watching a person I love go through it. At times I do not know which is worse. Be as open and honest as possible. Try and laugh about it some of the quirky side effects etc. Laughter is amazing medicine and lets your partner know that it’s okay to laugh
What is something you wish your friends and family members understood about your cancer and its impact on your life? What would you tell the friends and family members of other mom’s diagnosed with cancer? What would you want them to know about what she’s about to go through, and how best they can support her?
One of the biggest things for me was….. Just because I manage to look good (make up, jewelry and a smile) that does NOT mean that I don’t feel miserable. The little things mean a lot… a random text just to say hi. stopping in for coffee, laugh with your loved one… its really ok. Also remember…. despite having cancer and the many changes that go with treatment…. they are still the same person. Try to support, but don’t make life revolve around cancer
Were there any cancer-related activities or events in which you participated that you think were especially helpful to you or members of your family?
I signed up for Making Strides within a few weeks of being diagnosed. It made me feel somewhat in control. It also gave me as well as my family and friends something to focus on. It was an amazing experience
What are some solutions you found to practical problems of combining cancer treatment with raising young children?
I usually bribed with a special snack or extra snuggle time with Mommy. The snuggle time was the big seller. I also praised them continually when they were really good or did extra stuff to be helpful. It empowered them to feel that they had some control over things… and were helping mommy heal.
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