Hi, friends. It's been awhile.
I'm just going to jump right into the reason for my extended absence from my blog.
Back on January 13th, I was diagnosed with Triple Positive, Stage II, Grade 3 Invasive Ductal Carcinoma. In short: breast cancer.
Needless to say, my life, as well as my family's life, has been turned upside down.
Back on July 14th, my 36th birthday, I found a lump in my left breast. I had a well-woman's check up scheduled for later that month, so I waited until then and brought it up during that appointment. The Dr. assured me that it was nothing to be concerned about. The lump was just normal, denser breast tissue. This is common for a lot of woman. And since I was young, with no family history of breast cancer, my chances of it being of any concern were low. Besides, insurance companies don't cover mammograms for woman under 40 years old without a family history of breast cancer, so did I really want to pay thousands out of pocket just to be told the Dr. was right? Despite my concerns, I was ushered out the door without even an offer of a mammogram to further investigate.
But I know my body. And I trust my gut. And I knew it was something.
I called another woman's clinic further down the Gorge. Unfortunately, since I was a new patient, I wasn't going to be able to get in until December.
I should have called more places. I should have fought harder to be seen sooner. I should have advocated for myself so much more than I did. But even though deep down I knew something was wrong, I truly wanted to believe the first Dr. So I put my blinders on, continued on with life, and I patiently waited for my appointment in December. I regret that now, but I can't change it.
On December 2nd, I finally had my appointment at the other woman's clinic further down the gorge. I told that Dr. I was dismissed back in July, and that this time, I wasn't leaving the clinic until a mammogram was ordered. I didn't care if we had to pay out of pocket for it. By now, the lump in my breast had just about doubled in size. After a chat, the Dr. agreed that ordering a mammogram, as well as an ultrasound, was of the utmost priority. It felt great to finally have the support I had been seeking.
It still took another month to actually get in for the mammogram and ultrasound. I was frustrated with how slow everything was moving, but thankful I at least was on the books. On January 2nd, I went in for the tests. I had the ultrasound first, and the look on the tech's face told me everything I needed to know. I then had the mammogram, then headed home to wait. Obviously the results came back as "suspicious," and a breast and lymph node biopsy were ordered to investigate further. On January 12th, I had the biopsies done. On Friday, January 13th, I got my diagnoses.....it was breast cancer.
I will forever remember that moment. Sam was home because he had just decided to take the day off. The Dr. was telling me it was cancer, and all I could do was cry and ask if I could pass the phone to Sam for her to tell him.
My whole world was spinning. I truly lack the words to describe the fear I was feeling. When you first hear the word "cancer" you immediately think you are going to die. Your mind goes to worst case scenario, and all I could do was picture my children and husband living their lives without me in it. Those first days after my diagnosis was extremely difficult to make it through. I was filled with so much fear, anxiety, and I was incredibly depressed. It was wasn't until after my first meeting with my Oncology team on January 18th did I begin to feel marginally better. My main Oncologist reassured me that I wasn't going to die. And I decided that I believed her.
I left Sam in charge of sharing the news with family, but I wanted to be the one to tell our children. I have always been open and honest with them, so that was my plan moving forward. It was difficult, but children are owed our complete honesty. It's better than leaving them to their imaginations to conjure up all sorts of scary possibilities. I told them that this year would be hard, for all of us. For me going through treatment and the side effects, and changes to my body, and for them to witness it all and having to be more responsible and help out around the home more. I knew they were frightened, but I don't lie to them, and they know it, and I told them in the end, everything would be ok. I was here to stay, and here to continue to love them and be their Mama.
I am so sad that my children have to go through this. I wish I could shield them from this experience. I know this year will be hard on them. I have no idea what mental and emotional trauma they will now have to endure and live with. I have no idea how this experience will affect and shape their lives.
Here are the details about my specific diagnosis: Triple Positive, Stage II, Grade 3, Invasive Ductal Carcinoma. Triple Positive means my cancer has receptors for estrogen, progesterone, and HER2. Grade 3 means it has a high proliferation rate (it's aggressive)…..which is why from July to December, it had physically grown in size. Invasive Ductal Carcinoma means it is cancer located in the milk duct AND spreading to surrounding areas. And all of that information combined, in conjunction with the size of the tumor, places me at Stage II.
It's has been really hard to wrap my head around this new reality. Sometimes, in those moments when I first wake up in the morning, I forget. But then I remember. I remember I have cancer. And it hits me like a truck. Night time has continued to be the hardest time for me. It's hard to fall asleep because all I can think about is how I wish this weren't my reality right now. I wish this weren't my life. I wish my children didn't have to go through this. I wish my husband didn't have to go through this. I wish life could go back to being normal. I'd give anything for it to. I haven't slept through the night since receiving my diagnosis. I am so, so tired.
After my first meeting with my Oncology Team at Compass Oncology out of Portland, OR, things started to pick up. I had a lot to get done before being able to start chemo. I wanted to get genetic testing done to assess my risk of other cancers, as well as be able to arm my family with their possible risks as well. I also needed to get another lymph node biopsy done because enough of a sample wasn't gotten the first time, an MRI scan, a PET scan, an ECHO, and I had to have surgery to have my chemo port placed in my chest. The rest of January was busy. But it felt good to be busy. Planning helped keep me focused and sane so I didn't spiral down into depression.
Every day I was calling Compass to see if the orders for my needed tests had been sent in. Every day I was calling various places to get all my appointments scheduled. Every day I was calling to reschedule based on some other boleshit that came up. I was researching chemo. I was researching side effects. I was researching what I would need to see me through those side effects of chemo. I was researching what I should do about my hair. I was researching wigs and accessories, etc.
My genetics testing all came back negative, which is great news. The genetics testing tested 70+ genes that are associated with cancer. If you see the chart example below, you can see that a lot of the genes raise your risk of multiple different types of cancers. So lets say I had a positive hit for the first one....BRCA1, then my chances of getting breast cancer again in the future were elevated, as well as my chances for getting ovarian and pancreatic cancer. Because all my genetic testing came back negative, I do not carry any of the predispositioned cancer genes and am at NO elevated risk for ANY cancers. This also means my existing breast cancer diagnosis is truly just a sporadic case. It will never be known why I got breast cancer. If anything good has come from me getting breast cancer, it's that now all the women in my family can now have a mammogram covered before the age of 40.....since I am now the family history of breast cancer. And Molly, my daughter, can start having mammograms covered beginning at the age of 26. My hope is that they will take my journey seriously and take the steps needed to be proactive and advocate for themselves and their health.
On Friday, January 27th, I went in for my ECHO. The echocardiogram was done to make sure all parts of my heart are healthy, strong, and functioning correctly so I can be cleared to start chemo. My heart is as healthy as can be. The chemo drugs I will be taking are notorious for weaking parts of the heart, but that weakening IS completely reversable once chemo is complete. And to ensure my continued safety throughout treatment, I'll be getting an ECHO every four months this year.
On Tuesday, January 31st, I went in for my second lymph node biopsy. A second one had to be done because not enough of a tissue sample was taken the first time to adequately determine if my lymph nodes were affected or not. If this sample came back positive, I would be bumped up to stage III. Thankfully, the results of my second lymph node biopsy were negative. No cancer cells were detected in my lymph nodes. Don't let my smile fool you. Biopsies are no joke. Each time I've had an issue. Either with the needle going in at an angle where I wasn't completely numbed, or a nerve was hit. With this biopsy, I had a nerve hit that sent an electrical shock of pain down my entire arm and I had a numbing sensation in my arm pit and arm for days afterwards. No fun.
On Wednesday, February 1st, I went in for my breast MRI. This MRI was ordered to more accurately determine the size and mass of the cancer tumor in my left breast, and double check that I didn't have any suspicious spots in my right breast. Results came back negative for my right breast, and my cancer tumor in my left breast is judged to be about 6.4 cm in size.
On Thursday, February 2nd, I headed in for my port placement surgery. My port would allow my chemo drugs to be delivered directly into my port instead of having to do an IV in my arm. Surgery went well, but I was unprepared for the healing process and shock of having the port. I am naturally thin, so the port felt extremely painful and uncomfortable under my stretched out skin on my chest. And part of the port tube runs over my collar bone, which doesn't feel great. Any movement caused me great pain. And forget about coughing or sneezing. The incision took close to two weeks to heal appropriately. But a month out now and it causes me no more pain, it's just uncomfortable to touch and have any pressure placed on it. On Tuesday, February 7th, I went in for my PET scan. This scan would determine if I had any other areas of suspicion in my body that needed to be looked at for signs of cancer. My PET scan results came back negative for any other areas of suspicion.
On Saturday, February 11th, I cut my hair. This decision was met with shock by some, but it was the right decision for me. And despite it being an incredibly difficult moment for me during my cancer journey, I stand by my decision to have it done. My Oncologist, who I trust, assured me that the specific chemo drugs I would be taking, would for sure cause me to lose my hair. So I could either wait for my hair to fall out and throw it all away, or I could take control and cut my hair before chemo could take it. I have very little control over what is happening to me. This is one of the only things I did have control over. Cutting my hair before chemo could take it, would also allow me the opportunity to send my hair in to Compassionate Creations and have a wig made out of my own hair. I am so incredibly thankful I did my research and found this duo of amazing woman. Together, we have a plan in place to make a beautiful wig out of my own hair. I was also fortunate enough to have my friend, Arron, step up and donate his hair for my wig as well. I will forever be grateful to him for this act of kindness. The process is a long one, and I don't expect to have my wig until the end of April-beginning of May. But I can be patient. In the mean time, I've purchased a few wigs. One which has come in, the others are still in the mail. Despite knowing I was making the right decision for me, I was dreading cutting my hair. The day before and morning of was the hardest. I have never cried so much in my life. During, I know I shut down. I shut off all emotions just to make it through. I don't like the end result, of course. It has been very difficult to cope with. For over a week I kept reaching for my hair brush. Reaching up to take my pony tail out. Reaching up to run my hand through my hair. But there isn't any. I truly mourned the loss of my hair. I know it's just hair. And I know it'll grow back. And I know my identity isn't wrapped up in my hair. But knowing all those things doesn't make me feel better. It's easy to say such things when it's not your reality. Until it's you, you just don't understand. I hope you don't ever have to.
Here's a rainbow wig I got, just a cheapy one for fun. And then my much better quality wig that fits pretty ok. It's got a bit too much volume on top for me, but that's ok. I figured I might as well have some fun and try out some new styles. Why not? I still have a few more in the process of getting to me. I'm excited about those.
Another way I was able to stay busy, feel in control, and prepare for chemo was to get my bedroom set up as a healing space. I had researched everything I thought I would need to get through chemo, and incorporated those items into my space. I managed to score a medical bedside table for free, and bought some organizers for it that I stocked with: tissues, wipes, lotion, muscle rub, throat lozenges, mouth moistening spray, mouth sore cream, my nausea pills and nausea lollipops, a barf bowl, and bland snacks.
I got a whole bunch of new comfy loungewear and blankets as well. And I strung up a string of lights to give the room a cozy atmosphere. For the bathroom: extra soft oncology approved toothbrush, oncology approved mouth sore wash, and all my wig accessories: stands, brushes, spray bottle, wig hair washes and conditioners, head caps, head covers, etc.
I also enlisted Sam and Anthony to build me a large table for underneath the TV that could hold my mini fridge, tea items, snacks, and all my papers and books relating to my cancer journey. That was the piece that tied everything together and I am very thankful they built that for me.
Lastly, I went public with my cancer diagnosis and journey by posting about it on my FB. Being able to write about my journey thus far and what I've been thinking and feeling has been extremely cathartic. It's also been a great way for me to enlist the help and support of friends and family. I set up a Meal Train website where friends can either sign up to provide my family with a meal on days of my choosing, or donate money for us to use on food. This has been a life saver for us. I have greatly enjoyed the many meals we have already received, and it's been nice to stock the freezer with tons of meals and veggies from Costco so the kids always have something on hand to make. We've also received many financial donations from friends and family via the mail and Sam's PayPal. That money we are using for gas on the many trips to and from Portland for all of my appointments. Along with meal and financial support, I have received many special gifts from friends. Cancer cook books, blankets, lotion, note cards, a journal, a bracelet, banana bread, flowers, carrot cake, cup cakes, a scarf, coloring books and pencils, fuzzy socks, amazon gift cards, and many, many cards filled with love and well wishes.
We also had one of Sam's long time friends, Nik, who lived with us for a summer a little while back, offer to come back up and stay with us to help out as needed. Our friends down the way offered up their camper for him to stay in, so for a month and a half now he has been living in the camper and helping to get the kids to and from the bus stop, sports activities, helping with outside chores, and spending time with the kids. I greatly appreciate his help with getting the kids to and from the bus stop, so I don't have to wake up early to do so, and I can focus on resting my body and taking care of myself.
I will never, ever, be able to thank everyone for their love, kindness, and support. There are no words to express my gratitude. I am truly humbled. I can only promise to do my part to support others and make the World a better place when I make it out the other side of this cancer journey and I'm back on my feet.
With my room completed, my support system lined up, and all my pre-chemo appointments done, I was ready for chemo. The plan was for me to start on Monday, February 13th, but that didn't happen. I was incredibly angry and upset. The week prior we got a phone call saying our insurance hadn't approved it. From what we've learned now, our insurance company has 15 days....business days....to approve a request. Compass didn't put the request in soon enough for us to start on the 13th. The very first time they dropped the ball on something. We were incredibly angry about this, but couldn't change it. Sam worked hard every day calling what felt like everyone under the sun to figure out what we could do to still start on the 13th. But it just wasn't going to happen. When the 13th came and went, the new date was set for the following Monday, the 20th. But that still was outside the 15 business day window, so we feared I wasn't going to be able to start then either. Once again, Sam worked hard to get the orders flagged as urgent and approved. I truly don't know what I would do without Sam. He has been there every step of the way handling working with Compass and the Insurance company (which has NOT been a pleasure to work with!), as well as figuring out FMLA.
Speaking of the Family Medical Leave Act, we have been so grateful for that. Through FMLA, Sam gets 12 weeks off with 90% of his pay covered during those days. This has been vital to his ability to be by my side on the days I couldn't do an appointment alone, without our finances suffering more than need be. We also learned that we get 5 codes that can be used for free extended stays at any Extended Stay America Hotel. We've already used one code, which was for when we had my lymph node biopsy, MRI, and port placement surgery over the span of 3 days in Portland. I am thankful for any help we get financially to see us through on my cancer journey.
Thankfully, our insurance company got their act together after Sam was able to flag my chemo orders as urgent and they approved them so I could start on Monday, February 20th. Sam and I decided to stay in a hotel the night before, and that was a really great decision. I liked being able to sleep in and know there was no rush in the morning. I hope to get a hotel the night before every chemo.
We arrived at Compass at 8:45am, and after getting my blood levels checked, we were ushered up to the chemo suit and was all hooked up and starting my first treatment at 9:30am. We were there until about 4:00pm. Can you believe I had $147,00 worth of chemo meds pumped into my body during that time? It's insane. I wish the chemo suits were individual and private, instead of just being one big open room, but I understand they do it so that all of the nurses can see everyone and be there in a second when alarms go off. I can't say the chemo treatment process was fun, but it wasn't difficult. I literally just sat there reading and eating snacks while bag after bag of chemo meds dripped into my body. All the nurses were truly amazing and so very kind.
I was told that I would feel pretty ok up until Tuesday evening. That's when my body would start "winding down." However, my body had other plans. I don't know if it's because I'm already going into chemo with preexisting health issues (thyroid, adrenal, and immune issues), or if it's because I had had a migraine the day before and morning of that I had to take a bunch of different meds for to get rid of. My body wasted no time taking a nose dive. I didn't even make the 2 hour drive home without starting to feel like ill.
Chemo has been, hands down, the very worst experience of my entire life. The first week right after chemo was incredibly difficult to get through. I hardly recognized myself, and in all honest, I wanted to go to sleep and never wake up again. I experienced every side effect there was:
Sore & dry throat
Loss of voice
Insanely dry mouth
Eye infection (thankfully cleared up with a remedy from my homeopathy kit)
Dry nasal passages
Lack of appetite/inability to eat
Neuropathy in my toes/feet
Inability to sleep
Skin dryness/changes on face
Starting to lose hair on my body
UTI (I had to drive myself to the Dr. to get antibiotics for this during the end of my second week post chemo)
I was so ill. So very, very ill. The only think I was able to eat was broth, and hot water with honey in it. Sam stayed home that whole first week, and if it hadn't been for him, I wouldn't have made it through. I could do nothing for myself, not even bathe. I truly do lack the words to express how awful the whole first week post chemo was. The second week post chemo was better, but I still dealt with a lot of side effects. But at least I was able to get out of bed and shower myself.
Now that I'm into my third week post chemo, I feel more human side effect wise, but still lack the stamina and ability to live my normal life. And I've been dealing with headaches daily this week, which has been awful. I'm able to do things around the house in the morning, like laundry, washing dishes, and tidying up the house, when I have a burst of energy, but by noon time I am back in bed for the remainder of the day. My mom has come over a lot during the second and third weeks post chemo and has helped with chores, which I have been immensely grateful for. I am also thankful that I was able to get out o the house this past Saturday and drive myself to town to meet up with my dear friend, Molly, for breakfast. We hung out for 3 hours, and it was SO good to spend that time with her and chat and share my thoughts and feelings. She made me feel heard and seen ,which meant so very much to me. Afterwards I was completely pooped out, but the time spent with her was worth it.
This week I've done a lot of laying in bed, resting, watching old 80's episodes of The Price is Right, lol. Just like I used to do when home sick from school as a kid!
Unfortuantely, my hair started to fall out at the end of my second week. I lost all the hair on my body from the waist down, and the hair on my head started to come out shortly thereafter. My stress and anxiety had me physically pulling it out too, I just couldn't help myself, I was creating bald spots on my head that looked awful. So last night, I decided it was time for Sam to shave my head. Another hard moment that I didn't want to do....but I couldn't stand seeing my hair all over my pillow and in the shower and such. I cried the entire time, but the task is done. Again, I am thankful for Sam. He was so kind and compassionate during the process. He first used the clippers, and then finished the job with a razor. I'm not quite ready to share photos of my completely bald head yet, but we did get photos of the process. The colored ones Timothy took for me, and the black and white ones Nik took. Despite it being a difficult moment, I love the photos Nik took. It shows Leo at me feet. My little soul pup who never leaves my side.
This coming Monday, March 13th, I head in for my second round of chemo. I am DREADING it. To think I have to do this five more times truly brings me so much dread and anxiety. I am so scared that each time is going to be as hard as the first time. I can't imagine feeling like that again. I don't know what to expect. I'm just scared. But I have no choice. I have to continue on. I can physically feel my cancer tumor has gotten softer and more pliable. So the chemo is working. I take great strength in knowing that.
I think I have covered everything on my cancer journey thus far. I do apologize for my long absence. It's taken me a long time to get my head in the right space to write this post. I can't say that I will be posting as much as I normally do, but I do hope to continue to use my blog as a safe space to get my thoughts and feelings out. I love to write, and it has forever been important to me to leave a written diary for my children and myself to later look back on. I hope to have the energy to continue to do so throughout my cancer journey....and be able to eventually write a post letting the World know I am cancer free.
I know I will come out the other side of this a better person. A better person for myself. A better person for my husband. A better person for my children. A better person for the World.
Thank you for listening.
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