My Journey

October 19, 2023

In a few hours I’ll do chemo round 13. Three left after today. I’d love to say that I’m so totally in control of everything and kicking cancer’s butt however this week I just didn’t feel that way. In fact this week I felt frankly pissed off.   Monday I did a long good melt down cry and that just isn’t like me but in reflection I’m trying to cut myself some slack. The pain is getting worse and instead of 2 bad days it’s Sunday- Thursdays of bad days. The short term symptoms I have always been able to rise above. I can deal with muscle pain, hair loss, nausea, shortness of breath and fatigue as I know those will go away a few weeks/ months after chemo ends. It’s the long term damage effects that really gets to me.

Those long term issues are starting to really ramp up and lead me to be real frustrated this week. There are three of them. First, I’ve developed neuropathy of hands and feet.  It varies in severity but at it’s worse I needed to think about walking.  My toes, instep, and heal are numb and tingling. I have to focus when I walk and I’m scared if it’ll get worse and if so by how much.  Often this nerve damage does not improve, but I can sure hope that it might.  At the worst my fingers are so numb that it’s a challenge to type, text, or even use the remote control for the TV. Granted this feeling is still new to me and the human body can adjust amazingly well but I’m scared if my hands will get worse too.

The second issue is my ears. They started ringing three or so weeks ago. At first I thought I might have an ear infection but that is not the case, I’ve had them looked at twice.  I’ve come to learn that sometimes chemo damages the inner ear causing life long hearing loss. I have an appointment with an ear doctor on Halloween to confirm this. I’m very frustrated with this. I half joked with Nick that if this ringing doesn’t stop I’m going to find myself in a padded room rocking myself back and forth. It’s so annoying.  It’s sure possible that this could improve so I have hope but the potential of it being life long is another thing that made me mad this week.

The last long term symptom is lymphedema. The Radiologist confirmed that between my history of lymphedema, Family history, full lymph node surgery in December and radiation I should fully plan for severe lymphedema in the left arm. Not the end of the world, and there are things I can control to manage but on top of the ears, hands and feet- I’m frustrated.

Part of me is just shocked that in 2023, the best we can do for cancer is destroy many parts of the body and just hope cancer cells die along the way. Many of the women I’ve met during this journey have life long disabilities from the treatment. In fact most that I have some issues they managed daily. It’s just mind boggling. I was so ignorant at the beginning, it’s not a year long journey. The medicines taken after active treatment are hard core on side effects and those go for 5-10 years on top of all parts that are forever damaged.  Of course we do anything to live but depressing that we need to give up hearing, sense of touch and potentially our mobility to get there. I sure hope all these turn around and that I’m a lucky one. 

Man, I’m a downer today, apologies. This week I’ve had to proactively provoke positive thoughts, something that usually is natural. I tell myself, “there is no certainly these issues won’t improve or go away”. “Just focus on today and today I got this”.  “Not too much longer now and I’ll be done with the worst part.”

On a positive note, my hair is starting to grow back. Not sure why but I’ll take it. A few more weeks and I may have enough to dye pink.  🙂 I appreciate each of you! I’m sorry for being negative but I also want to be honest in this journey with you. My hope is that this next week I keep my eyes on each day and not stress about that I can’t control in the future. 

God is good, all the time. I may not be strong all the time but He is. I don’t understand everything but He does.

October 13, 2023

I learned a bunch this week. On Monday I had an ultrasound and there was no cancer masses they could see! Great news!  A little lymphedema but that was no surprise.  Now I did learn from the Radiologist this morning while it is good news, all that’s telling us is there is no one spot with more than a million cancer cells. That makes it slightly less exciting but still a win.

My Radiologist, that I met for the first time today, was trained at Mayo Clinic before coming to the cities. A super smart dude and he gave lots of detail for each recommendation he made. He explained that while chemo, additional lymph removal, and radiation is not common I really need to do it all.  Based on the size of the primary tumor and the fact that all lymph nodes tested were positive, I have 70-80% chance that there is cancer in those other lymph nodes.  Now hopefully most of all are dead now, we’ll find out. 

Nick asked a good question, he was curious if chemo tries to kill everything and you do surgery to take a lot more lymph nodes, why radiation too?  He explained that since I’m high risk, there is a good chance you have chance in the lymph nodes under the rib cage so that area needs to get treated. Also my neck on the left side above my collar bone is a high risk area.  Those areas are never treated with surgery because they’d need to break your rib cage and damage the muscle in your neck. No thank you.  There is also some area in the arm pit area that I’ll need radiation.  All fine, just get rid of the cancer and I’ll deal with an odd tan.   

He said if you were my wife I’d tell you to do the surgery. So I said sign me up.  I finish chemo Nov 9 and they need to give my body 4 weeks before they’ll do surgery, I’m such a type A, I asked if I can do it a week after. Hmmm no.

So looks like the first or second week in December for lymph node surgery. Then I need to heal from that before I start radiation so somewhere early or mid January I start radiation.  In terms of how long radiation will be he is suggesting a newer program for me that instead of 4 weeks on lower dose radiation, they will do 3 weeks of higher dose. I’m following his recommendation.  Then I start a bunch of new pills that my body will need to adjust too. I’ll be on those for 5-10 years.  But my doctor shared that with my scenario if it’s going to spread if generally will within the first year. Goodness how will I not be nervous for like a year. 🙈 I’ll try not to be but I’m not sure it’s totally possible.  

Then last and probably the only part I’m looking forward to- reconstruction.  6 months after radiation so it’s totally healed I’ll what’s called DIEP Flap surgery.  They take my skin, blood vessels, and fat from my low tummy and reattach all the vessels in my chest and make a new boob. No implant, it’s my own body materials and I basically get a free tummy tuck. Yes please. Healing is a bugger like 6 solid weeks but once it’s done I don’t need to go into and have an implant replaced every 8-10 years and no chance of my body fighting a foreign object. Plus they do a reduction and lift on the other side so they match. It’s like a mommy make over, like a Frankenstein version with plenty of scars.  But it’s still like a present for having a real crappy year. 😉 I’ll take it.

Im not thrilled to hear a third doctor tell me I’m high risk but I feel really good about the firm game plan. I understand the rationale.  I love my medical team. I love my work team.  I love my support network- you. My hubby continues to be amazing. I have to imagine this is getting just as old for him as it is me. I’m one lucky lady to have him be my rock. 

Here’s to just 4 more chemo treatments left! Hugs!

September 2023

Today marks half way done with Chemo!  Eight sessions done out of 16 total.  I’m getting there!  I’m taking next week off to attend a family retreat with other families going through breast cancer.  We are looking forward to a week on Lake Tahoe in California.  I’m nervous about the LONG drive but I’ll pack all my medicines and Nick said he’d drive. We leave tomorrow AM and arrive Sunday afternoon.  

The kids will miss a week of school but I’m confident they will catch up and we’ll make positive family memories during a challenging time. I try real diligently to look for the benefits during hard times.

One of the benefits of this cancer journey is reconnecting with friends. The young kid stage is a busy time in life. Between career growth, work travel, kids, volunteer and services often times friends go on the back burner. Cancer has reminded me how powerful positive relationships with friends are. Those people you can be completely transparent with- the good and bad. They celebrate life and cry with you if needed. I thank all my chemo and doctor appointment buddies. They have taken a day off work to be with me and I’m so grateful. Thank you Chemo buddies for turning a shitty experience into something I actually look forward to.

I hope all the best for you and yours as our kids go back to school.

Cancer has a way of shifting thinking patterns. I’ve always been the cup is clearly half full type person. This frame of mind has been a blessing through successes and failures. Happy times and certainly sad times.  But along this journey I feel I’m blessed to just have a cup at all.  It makes one think of time differently with greater value on today with greater focus on what I really want to do, accomplish, be with whatever time I have left whether that’s 40 years or 4.   I had chemo today and all went smoothly however the side effect of IV steroids is that I generally can’t sleep the first night. Annoying but I’m in no pain the first day or two thanks to all those pre-meds so I’ll be grateful.  

After all that random 1 Am philosophies 😏 let  me provide an update.  I’ve had some new swelling and tenderness in my left arm pit (left is cancer arm pit). So I spoke with the nurse about that today. I love my care providers. She could tell I was concerned about this. She examined the area and told me I’m likely developing lymphedema.  I’ve only had 4 lymph removed out of this area so that’s a bit of a bummer and I still have radiation to do which likely will make it worse. No cure for lymphedema and often is uncomfortable and frustrating to live with. With that said it’s the best thing she could have said since the alternative is that the cancer tumors are growing during chemo which is not really common but happens.  From a physical exam she won’t know for sure either way so I’ll be having an ultrasound of the area next week. Please send positive vibes that it’s early signs of lymphedema and not cancer growth.

The second update is that I meet with my radiologist next Friday.  It’s routine in the sense that I need to do the basic patient training and learn the timeline of my radiation treatment plan. But I’m having this meeting a few weeks early due to a large decision I need to make soon. There has been discussion of doing another surgery to remove a lot more lymph nodes prior to radiation. He is going to provide his thoughts and insight on pros and cons.  Having many more removed combined with new lymphedema developing leaves me at very high risk for severe lymphedema.  Mild lymphedema is annoying but severe lymphedema is full on disability and pain. Limiting function and reducing quality of life.  So he’ll help me assess pros and cons.  Pray that I get good advice and that I make the right decision, whatever that may be. 

A positive note is that I only having one more month of chemo! Yippee! Five months of chemo is down to one more. Symptoms are adding up and gradually getting worse but still manageable. My labs have been excellent for two months now. My body tolerates taxol way better than all that hospital drama that AC caused. On top of that I have no signs of neuropathy yet. That’s when the hands and feet have permanent nerve damage and thus losses feeling. If I can be greedy, please pray that I can continue to avoid that common taxol side effect. So far, so good! 

Bottom line, I have a cup! and I’m so very grateful. Plus that cup is rocking the pink for October Breast Cancer Awareness month. Adding some bling for good measure. 🙂 Thank you for sharing this journey with me, your support fills my cup right up!

August 17, 2023

When someone you care about has cancer this is a question you want to ask but know you just can’t.  Of course google to the rescue right? The tricky part is those are averages across a wide group with a similar stage and diagnosis profile but the Oncologist works with the patient to give them a clearer answer (which is still an educated guess). 

Big Picture: According to the National Cancer Institute (NCI), the survival rate for females with stage 3 breast cancer over a 5-year period is approximately 86%.

My personal scenario: my survival estimate for 5 years is lower, about 75%. Why?  Multiple reasons, but what I understand from the doctor (and frankly just knowing my body) this puppy grew quickly. At age 40 I had a routine, baseline mammogram done.  I almost considered skipping as I have limited family history of cancers and certainly no breast cancer in close family.  If you hear one thing it’s this- if you have boobs and are 40 or greater, get a base line mammogram. That helped prove to doctors what I knew… it grew from nothing to 8.4 CM in less than 2 years. For cancer, that is fast and aggressive.  Without that early mammogram they likely thought I had it cooking for more than five years as that would be more typical. So that’s the biggest reason for the reduction from 86% to 75%.  Another BIG factor, during the mastectomy they removed 4 lymph nodes. All 4 had cancer and 3 had visual masses. No good. That’s why I will go back for more lymph node surgery after chemo.  Hopefully they are fried at this point- charred masses.

Long story short, I’m choosing to listen to the experts – I need to throw the book at this now. Mastectomy, 5 months of chemo, more surgery, radiation, and various ongoing pills that will reduce estrogen in my body. Welcome hot flashes, good bye periods. TMI I know.  Throwing the book at it now gives me that 75% chance, if I did partial or nothing my chances go down a fair amount. 

I know this is a lot to digest but I want to be transparent as each person’s journey is different.  I can now respect more than ever why decisions are not clear cut.  Chemo and radiation and surgeries do put your life on hold and impacts your family. Period. If I were 83, I might not choose to go through this. But I’m 43, and confident I will be in the 75%. I will see my kids grow up!  I can do anything for a year. And if it comes back, I’ll fight again. 

As we are taking survival, I thought I’d share what I learned today.  I asked if my cancer center has a bell 🔔 to ring on the last day.  They don’t. Why? They are a larger center with many patients at stage 4 so they will be on chemo until there body gives out.  They don’t want to make them feel bad. I get it, I am grateful to be stage 3. I have a path to cure, many don’t.  So I will celebrate with virtual 🔔 in November but will be quiet and respectful at the center. 

Love you all! Thanks for allowing me to be transparent and sharing my journey with me!

August 17, 2023

I’m grateful to have the 8 weeks of AC treatments behind me. Today I officially kicked of my Taxol chemo journey. It will be weekly, every Thursday, for 12 treatments. I’m taking one week off in mid-September so if all goes smoothly I’ll finish the second week in November.  

I was a little nervous of this first taxol treatment. It’s known to have less intense nauseous side effects but more prone for patients to have allergic reactions.  Luckily, it went smooth for me and I’m grateful.  I’m tired and I’ve had some difficulty sleeping this past week (not a fun combo) but many other symptoms and side effects have improved.  Doctor gave me a sleeping pill option if I continue to struggle w sleep. Their eagerness to help with side effects is a blessing. 

In the picture you’ll notice some silly booties and mittens. They contain multiple ice packs. Taxol can cause numb fingers / feet and sometimes patients lose nails. The cold 🥶 is supposed to reduce blood flow to those areas while the chemo is entering the body. It’s not comfortable (ok it’s sucks) but any increase chance of saving my nails I’ll take. Those that know me well know I love fancy nails 💅. Im good with no hair but no taking my finger nails 😉

All in all today went smoothly, in the next two days I’ll learn how my body reacts to this medicine as the IV medicines will wear off. Thank for all the continued thoughts and prayers! Hugs and love to you!

August 11, 2023

So something crazy happened today!  I got a call from the Little Pink Houses of Hope non-profit organization. My family was offered a week long vacation retreat with other families going through breast cancer.  They specialize in giving families a break in the middle of the cancer journey and I was picked! At first I thought that I cant travel in the middle of chemo that’s just nuts. But I called my Oncologist and she said with 5 months of chemotherapy it’s totally ok and common for people to take one week off, it can actually be overall beneficial.  So after talking it over with the hubby… I think we are going to accept the free vacation.  Sweet!

Not only is AC red Devil behind me but now I have something to really look forward to- a break from weekly treatments!  It will be next month Sep 10-16.  God is Good!

Home

I received some good news this morning. After another x-ray, it shows that my port placement is fine where it is. That means no procedure to fix next week. Sweet!  And the blood clots are now gone thanks to the blood thinners. All positive news!

Have you ever heard of the term ‘chemo brain’? It refers to the brain fog that chemo causes.  I thought I’d share a funny example.  Last week when I was in the hospital I’d called Nick to share the good news that my white blood cells were increasing back to where they should be.   So I told him, “guess what, I’m no longer necrophiliac!” He chuckles 🤭 and asked if that was the word I meant. Oh my, no, I meant neutropenic.  Ha! Very different terms. 

Life if too short not to laugh at your own mistakes!

Bye Bye Red Devil AC!

July 31, 2023

I feel like crap but I’m still very happy, why!?  This morning was my last AC/ Red Devil chemotherapy session! I will not miss the last 8 weeks. Not even a little.  

I heal from AC and start taxol chemo treatments Aug 17. They will be every week for 12 weeks. If all goes smoothly with no delays I’ll “ring the bell” on Nov 2. That feels way too long from now but I’ve learned to focus more short term to kept everything more manageable in my mind.  I will soon finish what is likely the hardest part of this whole cancer journey but realistically this week will be the hardest of all. The AC builds up and I was feeling the crap before I felt the doctors but I can do anything for a week.  We can all do hard things when we need to.  It just so happens that Wednesday is my 43rd birthday 🥳 but it will likely be spent in bed. It’s all ok, I’ll celebrate DOUBLE time next year. 😉 

Random fun fact:  There is a drug called nulasta that is really cool. This medicine attaches to your stomach and 26 hrs after chemo it automatically injects a medicine that helps your bone marrow to jump start white blood cell production. Before it existed patients had to go back to the office to get a shot. How much would that suck?  No fun. A neat technology! Today I learned that it’s not cheap. Apparently it’s $16k a shot. Crazy but still really cool; I bet my insurance is not a fan of me about now. Sometimes insurance is so confusing, They approved this 100% without question but declined a $10 crème for my port that makes injections less painful.  

My mini celebration on completing AC is wearing pjs in the middle of the day with needless bling added. 🦄 Then add chilling on the deck. God is good, all the time.

Greetings!  I had chemo round 3 yesterday (of 16 total) and it went smoothly.  This was a 75% dose due to impacts the full doses were having.  

Today I had a CT of my heart to follow up on the clots and placement of the port.  I hear soon if I need to have surgery to fix the port placement. It’s supposed to be near the entrance of the heart but not in it.   I’m guessing I’ll need it fixed early next week. So much for avoiding the hospital this round.

My Customer Service co-workers surprised me today in a big way. They got matching #ValStrong Cancer shirts to support me and raised funding for cancer research. Since our team of appx 100 employees are spread out across the country they took pictures and left positive messages and put it in a book for me. It was so moving that it brought tears to my eyes. I am blessed with my work family!

July 12, 2023

I’d heard that cancer is journey with ups and downs but I didn’t really believe them. I thought I can handle any symptoms and plow on through, no bumps please, but here I am in the hospital again. 

Yesterday I felt good, real good actually, I even met with my boss to chat about return to work planning for August and had a zoom call with some other church leaders.  About 5 pm I started feeling sick- chills, mild fever, and sore throat.   They do a great job of explaining when to call the after hours for advice and even thou my fever was mild, I gave the nurse line a call about 5:45 pm.  Fifteen minutes later the on call Oncologist called back and after a short discussion I was packing a few items to go to the ER.  

Chemo really brings your white blood cell count (WBC) down, way down, so any possible infection is a serious deal. I took two Tylenol before I left the house and by the time I arrived at the ER my fever and chills were gone.  My throat still sucked but throat sores is common with chemo so I wasn’t worried about it. I thought they’d do some blood work and perhaps prescribe antibiotics to be on the safe side and send me home.  I was wrong.

I had lots of blood work done, a CT of my guts, x-ray of my chest, IV antibiotics, and told that I’ll be in the hospital a few days.  I learned that my counts are dangerously low.  So much so that they need to reduce the chemo drug level when they do the next round on Monday.  I have to take some deep breaths and trust the experts.  Overall, I have been very impressed with the doctors and nurses. They are kind and detailed. 

However there is other drama outside there control. The ER is full. The hospital is full. So even thou I was “admitted” last night there is no room in the main hospital. I spent all last night in a recliner chair in a back area of the ER having IV antibiotics. OMG it was a long night. Maybe two hours of sleep.  I’m still sitting in the chair. If a bed opens up I will be moved upstairs but there are no promises, there are others ahead of me. I may have 1-2 more nights in this puppy. I’m crossing fingers for a bed tonight.  But I know others are worse off than I am.  The hallways of the ER where full of very sick people waiting for a hospital room.   Because of my WBC I got a little private area so I can stay away from germs as much as possible.  They are doing the best they can. 

This journey sure has its ups and downs but I’m reminded that everyone has a journey and kindness must come first. I’m hoping your day is far less drama filled. Masked up and hand sanitized hugs to you!

July 14, 2023 – Hospital Update

After spending Wednesday night in the ER  (so not fun) I did get a room on the Oncology floor Thursday evening. I’m very grateful not only to have a bed but a room on the Oncology floor. These folks are experts in all things cancer. The ports, our symptoms, and are great about masks and being careful about germs in general.  

My labs are improving fast. Sweet. I was told they get concerned with results below 1,000 and mine where 300 when I first got here with a mild fever. Now I’m closer to normal and no fever since Wednesday night. All great news!

I was bummed to learn that they want to monitor me until Saturday but grateful that they care enough to make sure all the labs are improving and that I will be ready for Monday chemotherapy. I don’t want to slow the mission of getting this cancer gone for good. 

Victoria and Nick visited me yesterday so I’m sharing a little picture of her drawing a picture for me. Victoria introduced herself to my nurse and explained that this bald lady is her mom and that I usually have hair that looked like hers. 😉  I love that girl! The boys are still with the grandparents which is wonderful! They are having a great time being spoiled by them. 

Thank you for the prayers the last couple of days. I appreciate that, it’s been a challenging few days. I’m hopeful that reducing this next round of chemo down my 20% will mean that I NOT need to visit this place again.

Cheers to an uneventful round 3! I feel like I’ve said that before. 😉 I hope this post finds you and yours happy and healthy.

An emotional day, the hair tingling started a few days ago so it was time. I’m not sure I care much about losing my hair, it’s probably the only hair style I haven’t tried so all the better. But after, looking in the mirror, it was such a bold reminder. I’m sick. It just slaps you a little. Thank you Jackie for arranging this so I didn’t need to go out of the house. And thanks for well needed hug.

My cat officially has longer hair 🙈