July 30th-the Anxious feeling Creeps back

My upbeat mindset did not last long.   I struggle with an anxiety disorder and I started to ruminate a bit more on the what ifs.   Of course, I told Chris, the oncology nurse friend, about the lesion marker results, the surgery plan, and the next steps of meeting with the oncologist.   She informed me this was all good news.   I may need a bit more testing to confirm everything.  I don’t know why but the idea of more testing and the fear of a negative outcome started me ruminating.   I think I got lucky with good news of the markers I am going to get bad news if they keep testing; like a balance in karma or something.

I am also not feeling confident because my referral from here hasn’t been received by UW yet.   When I called to follow up, the nurse faxed the phone number I sent in my message request.  To be fair, I typed the wrong fax number anyway.   It was all corrected and now I was waiting for the phone call from UW to set up my appointment for a second opinion.  

I was also antsy because I knew the cancer center was supposed to call me to set up an appointment to see the oncologist.  The surgeon had to put in the referral for this appointment.   When I called, I learned the oncologist and the surgeon were messaging back and forth.  Immediately my anxious mind went to something was wrong.  I know my age is a concern; I am a bit young for the diagnosis.  I worry it is something more serious.  

With three iffy things going on at the same time, my anxiety creeps up and I have trouble calming myself.   I need to remind myself this is a bit of a roller coaster ride.  It will end, but not before the ride has plenty of ups and downs.   I am on this ride but I am not alone.   However, I need to acknowledge the overwhelming feelings but not allow them to take over.   I will not be able to make autonomous and informed decisions.   My goodness, the places the mind goes when there is the unknown.

By late morning, I get a call from the cancer center for an appointment in 2 days.   I learned and accepted, that doctors' appointments are made and I need to adjust my schedule to accommodate.  Otherwise, I won’t receive care in a timely matter.   Chris has agreed to go with me to this appointment and I am forever grateful.   She can help explain information and choices to me.  Also, a week ago, I showed her the MRI report because there was a spot in the right breast in question too.   I had scheduled a follow-up appointment in October for this concern.   She thought by reading the report, it was too small to biopsy, at this time, but was going to see if it could be addressed sooner than October. 

I feel very lucky to have a friend who had a career in oncology and her last facility to work before retirement was the cancer center.   She knew the facility, staff, and overall order to the madness.   This gratitude of connection helps me pull out of the rumination.   Even if there is more unknown, I am not going to be in the unknown for long.  I may not like the information but I have people and resources to help me better understand. 

I am fortunate enough that UW has received the referral and I am scheduled for a nurse intake phone call for 2 days as well.   I am happy I am finally getting a second opinion.   I am happy I am finally seeing the oncologist and moving forward.    I started the day anxious because I had done everything I needed to do to get the next steps going.   I needed to wait.   An immediate response isn’t needed for everything.   I did my best to help myself; I needed to trust the process it was moving forward.   And by the end of the day, my next steps were scheduled.  

July 28th and 29th-Marcia

Marica is the first person I told of my cancer diagnosis.  She was the only one who knew I was having an MRI and biopsy on a suspicious spot.  We were on a walk and Marica was telling me she had a co-worker who would often be on the phone because she was concerned about having breast cancer.   She was on the phone a lot making appointments.  This co-worker didn’t have cancer but was always worried.  

I shared my experience of FHN watching me.   I told Marcia I never leave an imagining appointment without knowing the next steps.   I may not know the results, but I know when and what the next appointment is required.   If I need a 6 or 3-month mammogram/ultrasound, it is scheduled before I leave.   My MRI and biopsy were scheduled for different days but were planned before I left.  FHN has a nurse navigator who is the point of contact for patients.   I share this because if someone is concerned about the next steps; they need to be in a better health network.   I never leave an appointment wondering what is next.

At this point, it has been nine months of follow-up appointments and finally, a biopsy was going to happen.   I wasn’t happy I needed a biopsy but a bit relieved because while the follow-up appointments are letting me know at least these suspicious spots are being watched; now the tissue can be tested to see what is going on.  I am not telling anyone what is going on because I don’t want to feel like I am crying wolf or calling unnecessary attention to myself.   Also on a side note, I was listening to a podcast series about women who are in partnerships with narcissistic men who emotionally abuse.   As the men are being called out on their behavior, at some point they seem to lie about having a horrible cancer diagnosis to take the pressure off of their bad behavior.   I did not want to be that person; calling attention to a health concern testing was still happening.

Regardless of my reasoning for keeping quiet on all of this, I am relieved I have said it out loud.  Two other dear friends know only because of a WhatsApp group we have together, but they both live far away and aren’t able to be with me physically.   So, when I messaged Marica that it was invasive carcinoma, she asked if she needed to come over.   At that time, I didn’t know much and was trying to still process it for myself. However, I did take her up on her offer to go with me to the surgeon’s appointment.  

Marcia and I went to the surgeon’s appointment together.   One it is nice to have a second set of ears and someone who will advocate for me.   It is someone who can vouch I am not making this up.   My diagnosis is early and I don’t look or feel sick, so this feels a bit unbelievable.  I have someone who is witnessing this insanity as well.

During the appointment with the surgeon, Dr. Barnes does a brilliant job showing where in the breast the cancer is located and explains the markers.   I have makers for estrogen and progesterone.   This means it is more mature cells and essentially a very common form of breast cancer.   In this appointment, we both learned only 10% of breast cancer is genetics and 90% is environmental; meaning it is unknown why there is cancer.   I am graded at a 2 out of 3 meaning my cancer is moderately aggressive.   I will not have to rush for treatment and have a very good prognosis outcome.  All good news. 

The next step was to meet with the oncologist at the cancer center.   The oncologist will have more insight into treatment.  From his point of view as a surgeon, I would need a lumpectomy, cutting the cancer out of the breast.   Meeting with the oncologist and factoring in his perspective may require a bigger surgery; but most likely not.  

As Marcia and I left Dr. Barnes’ office we both gave each other a big hug in the elevator.   A cancer diagnosis was not ideal but the markers on the tumor were a good indicator of treatment possibilities and options.   I am grateful I had Marcia with me to take in the information and have another person who heard the same good news as I did.   It validated what I heard!   Thank you, Marcia, for being with me through the rocky unknown.

Marcia and I are standing next to a sign showing we walked almost to Orangeville and back one day. It is a long story but we walked a total of 16 miles on a whim.

July 26th- Telling My Siblings

My brother was in town today and I asked him not to leave until I had a chance to talk to him in person.  For conflicting schedules, he arrived in town in the morning and I am at the county fair all day teaching goat yoga then working one of the booths.  I was also trying to get ahold of my sister to tell her too.   It happened everyone was going to find out on the same day.

My brother took the news fairly well and matter-of-factly.   I pretty much stated I don’t know much until I see the surgeon on Monday.   I also said I was working on a referral to UW.   He is good at accepting I am in the stage of gathering more information. I can’t know much else until more results come in.

Later my sister arrived.  My brother was there as I told her.   I had the report I received on Monday with the cancer diagnosis; officially invasive carcinoma.  This was a bit scary for her because I could see her start to tear up.   I explained yes, it is a bit frightening because it is labeled as invasive.  I reminded her what Chris, the oncology nurse told me, the markers were going to be more of an indicator of my prognosis.   Having the report of my diagnosis, though not fully completed, helped me tell my sister the news and next steps.

I am the eldest sibling.  I think a diagnosis like breast cancer has caused a stressor on my sister.   From now on, she will be a bit more at risk because she has an older sister with it.   Going through all of this, I was asked by every healthcare provider family history.   I can only report my paternal grandmother who was diagnosed with breast cancer in her 80’s.  It feels intense because it is stressed if anyone is under 50.   Well, I am 41 which means my sister may want to share this with any healthcare providers of her own as a precaution.   I am sure she is concerned because I am her sister but this adds a bit of fear because it may happen to her as well.   Honestly, no one has been genetically tested so it is unknown whether there is a familial history.  

It was helpful for me to tell my siblings because I could practice talking about my condition in a way that was direct, factual, and managed an emotional response.   The reaction of others has affected me.   I don’t want to be scared so I don’t want others to be scared for me.  People can have whatever emotions they want to have.  I am going into this with an optimistic attitude and I hope others can show similar support.   This isn’t going to be a fun time but I can make the best of what I can control.  I believe having an optimistic outlook helps me take in more information and make choices moving forward.  

Metphor of Climbing a Mountain

On June 17th, I hike Rainbow Mountain in the Cusco region of Peru.   I hired a guide upon my friend’s recommendation to not only have someone help me but also inform me about the geology, culture, and environment.  My friend stressed the importance of having a guide who will educate on the cultural history of the region.  For months before the trip, I was really worried about the higher altitude and lower oxygen levels in the air.  In 2018, I was in Puno, Peru visiting Lake Titicaca at an altitude of 14,000 feet.  I had symptoms of altitude sickness with headache and nausea; even though I was taking an altitude preventative medication.  Hiking Rainbow Mountain was a dream of mine and I was going to make it happen.   I prepared with a slow transition to the higher altitudes of the Andes Mountains and gave myself five days to acclimate.

The day arrives and my guide picks me up from my hotel in Cusco at 5 am.  Rudy was magic for me that day.  I sincerely feel bad for him because the walk was supposed to take an hour starting at 15,000 feet and going up to 17,000 feet.   My anxiety disorder kicked in and I spiraled back to the months of worrying; the thin air made me short of breath.   Or was it my anxiety?  Essentially, Rudy is walking me through mini panic attacks.  He would say let’s walk 20 steps and then pause.  20 steps became more and more each time.  He built a subtle trust as we hiked up and my anxiousness decreased.

I did not do myself any favors with carrying so much water; as it was heavy.   I probably had about 2.5 liters with me and had unloaded another 1.5 liters in the car.   The week prior, I was in the Amazon and I allowed myself to get a bit too dehydrated.   I struggled that past week, trying to rehydrate and keep up hydration while maintaining my adventures.   I wasn’t dehydrated enough to seek medical attention but was on the cusp for a few days.  Dehydration does not help combat altitude sickness; so, I carried lots of unnecessary water which added weight.  

At one of our many rest points, Rudy just grabs my bag and starts carrying it.   He offered earlier in the hike but I, with stubbornness, said I can carry my stuff; it wasn’t his job. Once again, he subtly did this I couldn’t protest. 

I don’t even know the time at this point, or if we are on time, but we made it to the first spot in which you can get an iconic picture with the mountain in the background.   Rudy points out that the line is halfway up to the highest point. He suggests we try to go all the way to the top and if anything, get in line to get a picture.   I didn’t think I would make the top.   My silly anxiety and fear of passing out from lower oxygen levels was overtaking me, mentally.   Rudy was magic and he got me to the top.   A six-year goal was reached!  I know it was all in my head because we hiked back without any breaks and I walked along just fine.  The mind plays tricks when something feels unknown.

There are people like Pam, Chris, and Marcia who I have named my guides in this journey of cancer.   I have to at least try to get an appointment at UW if Pam is going to drive me.   Marcia was the first person to know I had breast cancer and stepped up to go with me as a support to the surgeon.   Chris, with all her education and experience, could inform me of what report finding meant, action steps in protocols, and treatment options and side effects; anything I could expect.  Thanks to Rudy, I remember how empowered he made me feel by my trust in his support.  I am going to apply the same trust in my guides, Pam, Chris, and Marcia.

Now, not everyone on this journey is or wants to be a guide.   There are plenty of people who are supportive in their own way.  I am appreciative and humbled by everyone who is giving a bit of their energy for my healing journey.   I had support from hikers up Rainbow Mountain too; superficially a couple from Montevideo, Uruguay.   I didn’t ask their name but met them a day earlier on a city tour of Cusco.   We were the first three of the group tour to meet at the first stop and had time for the typical traveler's small talk.   Usually in Cusco, it involves when are or did you go to Machu Picchu and what are your other plans.  Well, we learned we both visited Machu Picchu 2 days earlier and were all hiking Rainbow Mountain the next day.

It is a small world because we crossed paths hiking up.   With encouragement, we all wished each other the best.  And then, we met again hiking down!   I learned the husband made it to the highest point and saw me up there!  Essentially, we are all trying to get to the top of the mountain and are cheering each other along.  We are happy when others make it and have empathic understanding when someone doesn’t.   It is just how their journey went for them that day (not always).  

The couple from Montevideo is how I see all those who are supportive.  They don’t have to be right next to me, but I know they are cheering and being supportive of me.   There is a Ram Dass quote that says, “We are all walking each other home.”  I feel this so strongly right now as I move forward with doctor’s appointments, adjusting my business, and changing the course of my life.   It may seem lonely in the unknown, but we are just walking each other home.  

EMPOWER DAY-July 24

Today started a bit rocky, like the day before.   I had therapy via video and pretty much cried and felt sorry for myself.  I am sure it was a bit more productive than me sobbing, but my therapist was great in letting me have my emotions and worry over the unknown of a cancer diagnosis.   I include this vulnerable insight because it is the first time I am allowing myself to be upset over my diagnosis.   I can cry for myself and have a space in which I won’t spiral into a space of anxious worry.

But within hours, I will be empowered.  I ended up sharing my news with a friend named Pam.   She is a three-time breast cancer survivor and steps in with advice.   First, she tells me about the University of Wisconsin Health Breast Clinic (UW-HBC).   She convinces me I need to get a second opinion there because breast healthcare is the primary focus.   I hemmed and hawed about because I didn’t want to seem non-compliant or untrusting of my healthcare network.   Pam says she will drive me to the appointment.   With a statement like that, I at the very least need to try to get an appointment. 

Pam texts her oncology/surgeon asking to see me.  Within a moment, Dr. Wilke responds to send my name, age, and phone number.  At this moment, I felt so empowered to move forward, fiercely.   I was still waiting for a consult with my local health network while I got an almost immediate and direct response from a doctor at a much larger healthcare system.

Within hours, I received a phone call and established as a patient with the UW Healthcare system.   All I needed now was a referral from my local healthcare network.   This is kind of a hiccup for me.   My primary care provider retired in May.   I wasn’t scheduled to see my new provider for almost five months in December.   So, I reached out to the woman’s health doctor who ordered my original mammogram in September 2023, ten months early.   I sent an email through the portals and hoped their office would send the referral.  

I feel I am being effective in my health by reaching out and establishing a second opinion.  The feeling of being contrary or non-compliant is gone because the response time from UW was quick and compassionate.  I was doing something and not waiting around for more results. 

I also decided to start telling my yoga community.   For just this week, those in person.   I will reach out individually to those who join the online community.   I taught my weekly Slow Flow yoga class.  Afterward, I told those who were in person.   I started by telling everyone the month prior I climbed Rainbow Mountain in the Ande Mountains of Peru followed by I was diagnosed two days ago with an invasive carcinoma in my left breast.   This is another empowering moment in my journey.

Chris, a yogi and retired oncology nurse, knows all the questions to ask.   I am relieved because a few weeks prior I had a magnetic resonance imaging (MRI) on both breasts with the spot in question being labeled a 5.  When I Googled two weeks prior what a 5 meant, the results were not favorable.  At another time, I will address my mindset on this but I want to point out the mental chaos occurring when reading a report when more testing (an actual biopsy) is needed for diagnosis.  Even a few weeks ago, I wanted to ask Chris what it all meant.  I decided because a biopsy would be the primary diagnosis, I wasn’t going to say or ask anything until I had more information.    

I asked if Chris would look at the reports and she said yes.   Upon seeing everything, especially the size of the lesion everything was hopeful.   The next big hurdle would be the markers on the tumor.   According to Chris, those markers would help decipher treatment options.   Yes, this is bad news but this was very treatable.   Chris immediately had optimism I would be treated, healed, and off on adventures by next summer.   I am hopeful too.  Thirty-plus years as an oncology nurse, she has seen many people through this journey.

I had one question to ask Chris.   The nurse navigator, LeAnn stated I also had the option to not treat.  I had to ask Chris why she said this.   I was told some women know they have cancer but it isn’t always palpable, they don’t feel systemically ill, and can’t physically notice anything wrong.   These women will wait until they see something; oftentimes decreasing potential hopeful outcomes.   I agree, I don’t have symptoms but I want to treat this sooner rather than later!

Full Day of Knowing- July 23

The emotions today were scared, helpless, and tearful.   The seriousness of the news was becoming more of a reality.   I am still saying I have an invasive carcinoma; saying cancer makes it too real or official.  Even seeing the word, cancer, typed out shutters me a bit.  I left the appointment yesterday with partial news.   The grading and makers aren’t available.  Without this information, it is hard to know the seriousness and possible protocols available.  It is a combination of being a serious health condition but not knowing how serious it is.  

This unknowing has made it hard to tell others.  I run my own business and I need to find a way to tell clients.   At this stage, I know I will need time off.  I don’t know for how long.  I also know, when I return to work, it won’t be at the same volume I am working now.   I am a bit stressed thinking I will have to break the news to clients while also indicating, that I may not be able to help them for a long while. 

The first client I told today, did not go well.   I lost my emotions and cried.  Oh my gosh, I am putting my issues on the client; not good.   However, they were empathetic and understanding.   I got myself together, realized what would and wouldn’t work in sharing the news, and moved forward with my work day.  

I am struggling with how to tell people because I don’t have enough information about my prognosis.  I know people want to help and support but I don’t want to feel responsible for comforting them.  Regardless of whether I am sharing with family or friends or it is a business relationship, I am still sharing upsetting or even triggering information.   For now, I come up with a plan to inform I will need surgery.  I don’t know exactly what the surgery and recovery will look like.   I state I am thankful for understanding if appointments need to shift in the future.  This is my plan for a neutral approach.  I can work on the details as soon as I can handle my own emotions.  

Diagnosis Day-July 22

The plan was to meet Leann, Nurse Navigator, at 9 am Monday, July 22nd. She came to the waiting room and we began the walk to her office. Along the way, we made the awkward small talk. She told me she spent the weekend in Texas at a wedding. My biopsy was a week prior. Leann and I made the plan that I would come back in person, no matter what, for the results. There was an option to have a phone call if the results were negative; to which I said no. If i didn’t receive a phone call, then I knew I would be getting bad news. At least I set myself up for hope.

Once in her office, she said she was giving me a copy of the report. I knew this wasn’t good news. Upon looking, it said, invasive carcinoma. I don’t recall if I had a response. What is there to say? What questions do I have? I don’t know what questions to have. I can’t remember what happened next, but I know Leann started getting next steps going for me, seeing the surgeon. She also was trying to help me understand the report. However, not all the information was available yet, like the markers. It was an odd position for Leann, give bad news, but not all the information was back from testing. She also said something I thought odd, that I didn’t have to do anything. It was my choice.

I told Leann, my primary care provider retired in May and I don’t establish with the new one until December. I asked to please not let me fall through the cracks. She reassured me she’d keep an eye on me. By this point, she was able to set up the appointment for the surgeon a week later. As she walked me back to the waiting room, she said dredded this moment all weekend. Becuase in the midst of all the information given to me in her office, she told me she knew on Thursday. I just remember saying, we both got the worst over. She gave me a supportive side hug and told me I can do this.

…..now to tell those who need to know.