Julie Bruggenkamp vs. Cancer

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Raised by 68 people in 18 months
Julie Bruggenkamp is my mother. She is 63 years old. Julie lives in Snohomish, WA with her husband Jack. She attended Inglemoor Senior High School. Julie finds herself in difficult and uncharted territory. This is why I’m inviting you to give and invite your friends to do the same.

In August 2017, after being remarkably healthy, Julie learned she had lobular carcinoma in her left breast (stage and grade 2, reactive to estrogen). That cancer was also found in her lymph nodes. On September 5, 2017, Julie underwent a successful mastectomy of the left breast from which she is recovering.

In the interim between the diagnosis of breast cancer and the mastectomy, Julie also learned she has renal cancer in her right kidney (stage 2b). To be clear, the breast cancer did not metastasize to her kidney. Julie has breast cancer and renal cancer, two discreet cancers simultaneously.

It is rare that a woman has breast and renal cancer. Julie is fortunate on two counts regarding the renal cancer: one, it is unusual for this aggressive cancer to be identified at an early stage as it was in her case. Two, the renal cancer has not metastasized to the bladder or urethra. She is profoundly grateful for this as it increased her odds of survivability and the likelihood that she will continue to have typical bladder function.  On October 11, her right kidney is being removed.

While looking forward to having all the cancer out of her body, Julie understands that the removal of the kidney is a more complex surgery than a mastectomy. The healing may be slower and more painful.

Julie will also commence chemo therapy and radiation. There are many aspects of her diagnosis, treatment and recovery unfolding. It’s hard to keep up with.

It is a humbling exercise to find words that introduce my mom to the world, to present her in a way that doesn’t embarrass her and to explain why I hope she can live a long, happy life. My mom became the sole wage earner in her household about a year and a half ago when her husband had a stroke that changed his skills and ability to work. Julie works for the Snohomish School District as a para educator and she is good at it. Though not always for Snohomish, she has worked with students with disabilities for more than 30 years. Julie particularly enjoys working with young people with autism or kids with complex medical needs. For many summers she worked for Camp Prov in Everett. She brings a particular credibility and understanding when engaging with parents of children with disabilities because one of her two daughters has a disability.

Julie likes simple things such as campfires, festive holidays with all the trimmings, and wine. She has a soft spot for stray critters, especially dogs. She did find room in her heart for a rough tomcat called Brewster, a true hunter.

Julie is uniquely talented at making something out of nothing, or close to it. She has an eye and can turn a dodgy apartment or dated interior into a cozy, inviting place. She makes a decent dinner out of ingredients on hand even when no one else sees the possibilities. Julie has always been an artist. She draws, paints, and is a maven with crafts such as paper-making and doll-making. She writes stories and songs for children. She is a master thrift store shopper. When I got my first job that required a professional wardrobe and didn’t have one, for $100 she hooked me up!

What’s missing here is Julie’s really goofy side. She doesn’t hesitate to do things that make her look silly. She danced around with those kids at Camp Prov until she was too sore to move. Julie took on a bunch of chickens, named each one and took pictures of them depicting their various personalities. In one image, a chicken dawned a string of pearls. Chicken meets Jackie Onassis, sans the iconic glasses? Go figure.

Thankfully my mom has some insurance. Undoubtedly there will be expenses that will not be covered. Frankly, she is likely to miss a fair amount of work. Even with shared leave and FMLA, it is hard to anticipate and budget for these circumstances. Finances are a source of concern for her. There are currently a number of unknowns. Any gifts contributed here will go to: co-pays, deductibles, procedures that are not covered by insurance, medication, palliative care, lost income for living expenses or service, supports or resources to manage the emerging challenges.
Some choose to give based on common interests, values or experience. Some that may apply are: breast cancer, renal cancer, Snohomish, Snohomish School District, Camp Prov, Inglemoor Senior High School, Washington State native , Seahawks fan, para educator, US Army (her husband served), art/artists, crafting, animal lover, wife, mother and sister.

Thank you so much for your generosity and kindness. Thank you for being part of Julie’s recovery. We also established a CaringBridge site. Look it up under her name “Julie Bruggenkamp.”
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Wow. The rhythms and pace of cancer treatment are something particular. There is a relentless quality of starts, stops and follow ups. Since we last posted an update Julie has undergone 33 radiation treatments and completed the course. As of June 11th she completed chemo and radiation. This is a huge milestone. Consider this:
A year and 8 days ago something showed up on her mammogram
On August 17 she underwent a biopsy on her left breast
On August 24 she had a renal biopsy
On September 5 she had a mastectomy
On October 11, her right kidney was removed
After six weeks of recovery she commenced four months of chemo
A month and two days later she started an arduous radiation schedule.
Even reduced to a list with bullets it is humbling. At each of those points there has been wondering, worrying, not knowing, letting go of as much worry as possible, moving through it, discovering what she needs to know and a lot of paperwork. Did I mention the persistent glimmers of hope? There were some good cries, sleepless nights, discomfort (a favorite euphemism), the unknown and a remarkable collection of fine people who stepped forward instead of looking away. Thank you most of all for your true acts of friendship and kindness. The moving generosity, encouragement, sick leave, meals, visits, blankets, essential oils, affirming posts-- in short, there isn't a way to do justice to the impact of your profound love. Thank you. The process isn't over. There are tests and scans and more scans on a schedule. We hope to be able to tell you that Julie is done with cancer. We can't say that yet. We are more hopeful than at any point so far.
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We hope you and yours are having a lovely weekend. Over the life of this campaign the outpouring of generosity and kindness has been amazing. We want to thank each and every person who has given here . It’s hard to pinpoint anything good about cancer itself but what is purely good, is the generosity kindness and encouragement you have shared and what it says about the community of people Julie knows. Many Thanks.
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Dear Friends,

Thank you for your continued interest in this journal and for the amazing outpouring of friendship you have given Julie. We can never overstate how much this means. Every kind word, thoughtful action generous gift and moment of encouragement is so appreciated when someone is navigating serious illness.

We cannot imagine the fortitude someone with no family or few friends has to muster in a similar situation ...

I have been remiss in my duty to report. Please forgive me. There has been plenty going on. As things are unfolding I am less confident that I understand the medical information and what it may or may not mean. I don't want to share misinformation, raise alarm or misrepresent anything but as I've mentioned here before, mine is a secondhand interpretation of Julie's experience from 1,500 miles away.

Mom, if I'm off base please weigh in.

Here are some positive developments: Julie is done with chemo infusions and on the home front Jack will be re-entering the labor force on a very part-time basis. These are two milestones they feel excited about. Also, Julie can never say enough good things about her school district colleagues. One of the ways they have been so helpful is by donating sick leave which is one of the things that has given her some peace of mind. Thank you.

Julie began developing neuropathy in her hands and feet as the chemotherapy progressed. Her team felt that the risk of further damage outweighed the benefit of doing the last two infusions. The neuropathy may advance. I don't know why or what contributes to it. Julie has reduced fine motor skills and numbness. Recently when chopping something she cut herself.

Julie discovered that being done with chemo infusions doesn't mean being done with chemotherapy. She is commencing with oral chemo and is told there will be fewer side effects.

The aspect of her prognosis that I understand least relates to the renal cancer and it is one of two things that most concerns me. You may remember that cancer was discovered in her right kidney. It was not
metastatic breast cancer. It was a second distinct cancer, renal. The kidney was removed and I understood that with it went all the cancer. She offered two explanations to me. Initially she said it was discovered early at stage one but that after the kidney was removed the staging was revised to three. Still she wasn’t worried because the cancer was out. Then, more recently, she said the renal cancer was stage one, grade three. The grade determines how aggressive the cancer was. It was aggressive. Still, since all of it was removed, while not good news, we saw no need for alarmed.

Now, I at least, am less clear about what level of concern to assign the current state with the renal cancer because Julie’s understanding of it seems murky, and there seems to be miscommunication or limited communication between the oncologist and the kidney doctor. The thing that leaves me wondering is that the kidney doctor has called her twice after hours from his cell which leads me to think it is important. Further, they want to scan her every three to four months to make sure that not a single cell of the kidney cancer traveled and was missed. This is sobering.

Also, we learned that far less is known about renal cancer than breast cancer. As a consequence the treatments currently available are not yet as effective.

The second concerning development is that during a recent annual exam a spot was found on her cervix that the doctor wants to watch and biopsy. This is nerve wracking.

Emotionally, I have noticed an understandable creeping wariness in Mom. She doesn’t sound confident. I don’t blame her in the least. She has faced a lot with a lot of grace. I hear her doubt and desire to be truly cancer free, free of need for follow up at ominous intervals.

There is an undeniable dose of limbo that comes with a diagnosis like this. It’s difficult to make plans and to count on things. Julie likes to be the helper. She is less fond of the being in the weird, uncertain state that people enter when they are sick.

Here Julie would urge me to say something cheerful or hopeful or light because she would be more comfortable, if I emphasized they aren’t so bad. Things aren’t so bad. I’m not certain they are objectively good … says the narrator who strives for reliability. Thanks for your patience.
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By Joelle Brouner - An hour ago
I hope Julie comes to like shrimp again one day. There is a growing list of foods that now taste terribly rancid and metallic. Even among the gross and super gross, shrimp stands out as repugnant. Another loser? Trader Joe’s pizza. She managed one piece. The effects of chemo therapy are cumulative and as Julie takes each treatment some of the more widely known side effects have come to visit.

The short list of enjoyable foods? Beef, chocolate ice cream, gram crackers and peanut butter. She really likes to break up the gram crackers and mix them in with the ice cream. Mom, have you added the peanut butter in with the gram crackers and ice cream? Can you stomach beef swimming rama (beef on a bed of spinach with peanut sauce)?

Historically, Julie hasn’t had much of a sweet tooth. For some reason she is judging herself for eating too much ice cream. Mom, you have probably consumed one bowl of ice cream or less each year for the last forty years (including your relatively new annual birthday crab extravaganza with a little Ben & Jerry’s for dessert) you’ve earned the damn ice cream. If you gain a modest bit of weight, either don’t worry about it or turn your attention to it later.

Julie has graciously permitted me to write these journal entries. She hasn’t asked that I leave much out but she prefers that I emphasize the positive. Mom, I’m trying but I know you want me to be real also.

One side effect that Julie has encountered is axillary web syndrome. Axillary web syndrome happens sometimes as a consequence of removing lymph nodes for biopsy. The lymph nodes operate like something of a network and they don’t always respond favorably to disruption. Julie explained that her range of motion was limited and that it felt as if there was a cord of pain running from the tip of her thumb to the middle of her stomach. Fortunately, years of personal and professional associations with physical therapists, she worked the problem, created customized exercises and regained full range of motion. Yay Mom. If you like PT, have at it.

There has been some nerve pain. Julie hardly mentions it. This speaks to her pain tolerance. She added some gabapentin to her regime and it seems to be taking the edge off. Lymphedema has also been a companion. It’s uncomfortable but not painful. The last few side effects I’ll mention are brain fog (just a bit), rare instances of trouble with word finding and numbness at the site of the mastectomy.

Throughout this unexpected adventure in medicine, Julie has kept a level head and adapted to an array of changes. Yesterday we were chatting about fingernails. Hers are in rough shape and one of them is about ready to fall off. This quite irritates her. She mentioned that her eyebrows are falling out. Julie says having cancer means “completely giving up control of your schedule and waiting for parts of your body to fall off.” In the same breath she reminded me that “It won’t be this way forever.” No, happily Mom, it won’t be.

In the meanwhile, Julie is working on illustrations for a children’s story, enjoying the Olympics and hopefully eating a generous pile of chocolate ice cream with crushed gram crackers and peanut butter in it.
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Raised by 68 people in 18 months
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