Like Daughter, Like Mother

Had a decent night. Up frequently but stayed on top of pain meds. Have vomited a number of times & having difficulty trying to keep anything down. Managed a walk to the mailbox.

I've been asking for prayer for my family this past week. Last week my mom found out that she has breast cancer as well. It was caught early but will still require some difficult decisions to be made about treatment.

I have an amazing family that has been carrying me through these last seven months. We will continue to so for my mom but really could use your prayers as well.

Thanks!

The ladies of my family (except one niece)

Home

Surgery done. Just got home. In a decent amount of pain. Resting...

Staff were great &  have an amazing husband!

My new "bed" for the next while.

Wednesday's Surgery

My surgery is scheduled for Wednesday at 12:30 (te Merkuren ne oren 2130 ne Kosove) at JPOC. I have to be there a couple hours before the surgery to get prepped.

Even though it is quite an extensive surgery (so I'm told anyway), it is done on an outpatient basis. If there are no complications, I'll be back at home in the evening. If there are complications, I'll be admitted to SMH.

My recliner is ready to be my "home" for the next few days. I have button up pjs and shirts as it will be difficult to lift my arms. I'm going through my plethora of medications to find my pain & nausea pills (although I'm not sure if I'll be able to open the child safety caps). I hope that wearing my chemo socks for surgery and recovery won't spoil the spirit of my chemo socks (I think the originator of the sock idea would approve).

I'd appreciate your continued prayers for:

- me: as I go through this next chapter of treatment and recovery

- Xhevat: as he takes care of me, works, is away from his son and is carrying a heavy burden as a husband and father

- Matias: as he's away from home & parents (and loving his time with his cousins, aunt & uncle, and grandparents)

- Family in Kelowna & Kosova: who are far away, concerned for us and hurting with us

- Volunteers, janitors, instrument cleaners, unit clerks, nurses, surgeons & others we'll be encountering tomorrow: each of these people will make an impact in my surgery & recovery... but each of these people have joys and concerns going on in their lives as well. Please join me in praying for what is on their hearts and minds.

A Dear John Letter to my Breasts

Dear John (aka my Breasts),

I just wanted to let you know that we're breaking up. 

For the first dozen years of my life, I couldn't have cared less about you. You did nothing for me... then again, I didn't want or need you for anything.

Then came puberty and "the change." Our awkward relationship started during this time as I tried to figure out if I looked good enough. Magazines and media (and the occasional friend) said I should look or dress one way. I didn't feel comfortable doing that and so I hid in bigger clothes. I didn't really understand what it meant to love me for me and that I was beautiful just the way I was.

College helped me change some thoughts. I was reminded that I was beautiful... and it wasn't because of either of you! I learned how to dress myself better outwardly to match what I knew was true of my inner beauty.

For a few years I lived overseas and that made me question a lot about how I felt about you and the rest of my body. I chose to dress conservatively and yet felt like I was being undressed and judged by the stares of both men and women. Never had I felt more uncomfortable and exposed. I chose to walk and dress with confidence no matter what were the reactions of others.

Then for the first time when I got married, I learned to accept you and felt way more than just "good enough." Fast forward five years and you finally served a real purpose. You helped me nourish my little boy for almost six months. Breastfeeding was by no means an easy task but again, it was a choice and sacrifice to give my boy the best that I could offer.

And then you had the audacity to try and kill me!

After all these years... I've tried to take care of you, not abuse you, and not base my life around you... I've bought you bras that made you look good and helped me feel good. I dressed you nicely but didn't show you off unnecessarily. And now you're trying kill me? Was that really necessary? I don't think so.

So I thank you for teaching me many lessons through the years about the true meaning of beauty. Thank you for helping me give my best to my little boy. And through this experience, thank you for teaching me to see past you to my heart.

In the last year and a half, I will have gone from a 34 A/B to a 36 DD to a 34 A & B and soon I'll be just a 34. I've spent more money on bras this past year than I have perhaps in the rest of my life! No more. I'm through with playing this game of changing sizes and I'm especially through with that big lump of cancer in you.

Over the last seven months I've looked in my bathroom mirror and cried as I shaved my head, my finger nails were damaged, my eyebrows & eyelashes fell out. "It's ok... they'll grow back," I was told.  

Well, my friends, you're getting cut off and you're not coming back. I'm finished with you. I no longer have need for either of you. I am better off without you. Goodbye.

But even though I no longer want you in my life, you are a part of me and I'm having a hard time of saying goodbye and letting go. I'm afraid of facing the feelings of being "less of a woman." I know that this is a lie but I'm still having to work through it to believe the truth. I'm not looking forward to the pain of our separation. I've heard to prepare for some difficult days ahead. 

I am more than relieved to know that I will have my dear husband beside me when I wake up and I know that I will be loved no matter what I look like. I really couldn't ask for a better friend and support through this than my husband. I'm struggling at the idea of being away from my son and all of the joy he brings. Not seeing his smile or hearing his voice first thing in the morning will be difficult. I know that he will be taken care of well and will have so much fun playing with his cousins. I can't wait for the day when I get to wrap my arms around him without the fear of pain.

I will be learning a new lesson about beauty tomorrow and the following days. I will look in that same mirror and cry as I learn to accept the new me with my wounds and scars... and less cancer.

I want to live... and you're trying to stop me from it... so it's either you or me.

And I choose me.

Surgery... next week

February 14:

Dr. P: You have advanced breast cancer which has metastasized to your lymph nodes, liver, ovaries, pelvis & spine. Treatment is palliative (the goal is not to get rid of all of your cancer but to help you to live as long as possible and as comfortably as possible with your cancer).

Me: Options for treatment? 

Dr. P: Chemotherapy... starting tomorrow.

Me: Radiation? 

Dr. P: No. Not unless your cancer is causing you severe pain.

Me: Surgery? 

Dr. P: No. Don't feel it would be beneficial based on how advanced your cancer is in your liver (largest liver lesion is 4.4cm).

Me: Physiotherapy? 

Dr. P: Not now.

Me: Massage therapy? 

Dr. P: Not now.

Me: Prognosis? 

Dr. P: Are you sure you want to know? Me: Yes. 

Dr. P: Average lifespan is 2-3 years.

Things didn't look promising but I have feist and I'm going to do everything I can to be lengthening that lifespan average. And I'll keep on asking the questions nicely to try & have as many options as possible.

Bring it on cancer. You've messed with the wrong lady!

March 12

Physiotherapy? Yes.

April 9

CT results? Improvement everywhere (largest liver lesion 2.2cm).

Massage therapy? Yes.

If I had NOT received chemo, what would my prognosis have been? Weeks to months.

June 4

Am I a candidate for surgery yet? Yes. Really, I'm a candidate for surgery? Yes (largest liver lesion 1.6cm).

July & August

Appointments with Gen. Surgeon, Plastic Surgeon & Gynaecological Surgeon (largest liver lesion 1.2cm).

I've held back on sharing the news of being a candidate for surgery for a few reasons -- the biggest of which has been that I was afraid my cancer would progress after treatment or that something would change the opinion of the doctors and this would no longer be an option. And then I'd have to explain even more.

My doctor feels that I've responded so well to treatment that it might now be beneficial to have a mastectomy.  The idea behind this is that by decreasing the tumour burden, my body will be able to handle the remaining cancer better and for a longer time. My surgeons want to be a little more cautious with me (perhaps because they've seen my son's energy) and have said that I'm not allowed to lift for 4 weeks... so this means someone will be needing to take care of my precious boy for a month.

I don't like the thought of removing parts of my body but I'm not going to reflect on that right now. I do enjoy the thought of getting rid of a big bunch of my cancer and striking off cancer in a couple more places in me. I'm nervous about losing parts of me, surgery & complications, a difficult recovery, not being able to care for my boy, not being able to care for myself, etc.

Yesterday I was given an OR date of next Wed, Sept. 18.

Would you please be praying for me and my family as we walk through this cancer journey together? 

Just Visiting: A Letter To My Chemo Nurses

With the abrupt stop to my chemo, I didn't really feel like I had a chance to say goodbye.  I've had a few appointments through this last month but I was finally able to get my act together yesterday to thank the nurses who had been a part of my Fridays (and some really difficult moments) for twenty-six weeks. I never had to explain my disease, sorrow or struggles. I had nurses who just listened and understood as best as they could. I met more than twelve nurses but these were the ones that I remembered to write about through my treatment. To those that I have forgotten, I blame it on my chemo brain.

(I've removed the names of the staff from the letter... because that's what I'd want if I was the nurse).

 

 

Sept. 8, 2013

To my chemo nurses:

I have never enjoyed working in oncology. As an "outsider/float nurse" or when an oncology patient was critically ill, it was always very difficult to enter into these established relationships and feel like both I and my skills were trusted. I get it now.

Being an oncology patient is hard enough... but being a nurse and an oncology patient is just down right hard! Thank you for making me feel that I was respected as both... and for accepting my questions, conspiracy theories, black humor & jokes.

Thank you too for accepting my constant questions and desire to know more about what's going on with me. I have been trying to learn to be an advocate with kindness for myself. I hope that has come across as I have nothing but huge respect for each of you.

This is NOT a goodbye... I'm only on my first line of chemo! After a good long time on oral meds (I'm happy with decades), I hope to become a repeat frequent flyer here so that my cancer and I can coexist for a long, long time.  Or perhaps I'll just amaze you all with an inexplicable No Evidence of Disease or be miraculously healed. Then I'll just have to come back to visit or volunteer... or work. :-)

Yes, that's how much you've changed my thoughts and my heart about oncology nursing. While I still don't know if I could do pediatric oncology, I've come to love and appreciate the roles you have played in my life through this time. Thank you!

Nurse S: my first chemo nurse, has given really supportive advice @ critical times (end of first chemo session: "You're leaving with less cancer than you arrived here with" and after some loud banter & a delay in giving care because I was saying congrats and goodbyes to another pt & support person @ her last chemo session: "your conversation and connecting with other patients are an important part of your treatment."

Nurse L: always up for a laugh & a joke but is also extremely empathetic, I love the environment and friendships that are created around you; a nurse that I can fall asleep with when getting chemo... but one I want to stay awake with and enjoy! Sorry for getting you in trouble... not really (next time I'm pulling the call button and blaming it on you!). Thanks too for being my "last" chemo nurse... this time.

Nurse T: gave me my first 'bad' news of low neutrophils, extremely empathetic and willing to research the weird ANC questions from my pediatric perspective, shows humility

Nurse K: very thorough and diligent in your work, thanks for letting me give you the finger as you started my IV... and thanks for not poking me on the day when my chemo was delayed

Nurse S: gentle, kind, concerned, a genuine smile; I was warned you were a great chemo nurse and those warnings were true... thank you

Nurse B: always moving and solving problems; thorough (I love that you talk through situations out loud... then again, maybe you just did that for me... I felt like I was able to be more involved in my care and what was going on)

Nurse O: a hard worker; willing to trade baby stories & pictures... it was great to see your growing belly!

Nurse Y: always willing to be a resource and share with me both as a nurse and patient ; I love that you're not only a nurse but have also done/do extremely different jobs in your life

Nurse S: my chemo teach nurse who got my first snarky comment; you always have a kind, gentle smile on your face & this calming presence about you... thank you for taking my snarky comment in stride and for not writing me off immediately

Nurse N: my football friend & made a bit of a mess spilling "fluids"; thank you for rearranging my chemo time do that I wasn't going drugged to my doctor's appointment

Nurse L: sorry that I caused you extra paperwork when I reacted; always present & super empathetic; I love how you are gentle and thoughtful in the words you choose

Nurse J: I was a bit of a nervous Nellie when getting chemo. I learned that I need to give people the benefit of the doubt rather than looking for errors to be made; thank you for clarifying things with me from the start and relieving my stress


P.S. If you were wondering why I disappeared from your Friday afternoons, here's the story... Dr. P didn't like that I gave him the finger and so he stopped my chemo.

You're thinking that Dr. P wouldn't do that... well, it's true. Ask Nurse L. She was there!

My fingernails, combined with a staph infection and low neutrophils, got the better of me. August's first Friday brought a delay for chemo and a round of antibiotics. When the infection still wasn't clearing up as quickly as desired and my neutrophils stayed low, Dr. P decided to stop chemo after I showed him my fingers (see, I told you it was true). I'm thankful for his insight as it took another round of antibiotics and my neutrophils to drop even further before things started to get better.

The remainder of August was a blur. We had lots of visitors, a vacation in WA and a big party for our boy's first birthday. My fingernails are no longer infected and I'm no longer neutropenic!

 

Thank you for bringing joy, encouragement, understanding, hope, and laughter to my Fridays for twenty-six weeks. And thank you for being a part of helping me see my son's first birthday. You have no idea how you've changed my life. Thank you!

Krista

My "thank you" to my nurses.

Celebrations

Last week we celebrated!

Between our family members we celebrated a 45th wedding anniversary, a 15th anniversary, a first birthday, a 69th birthday and an engagement. 

Birthdays, and therefore birthday parties, have always been big in my family. Weeks or even months in advance the ideas and party planning begin. The cake, games, food, decorations and gift bags are just some of the items to be ticked off the party planning list. 

Our boy is an energetic, fun-loving, constantly moving child who has proven himself to be a little monkey and so it seemed appropriate to do a monkey-themed party. Streamers were strung. Monkeys were painted. Gift bags were stuffed. Cakes were decorated. Monkey-roni and cheese was baked.

And did we ever celebrate!

Our little monkey was too excited to have an afternoon nap and instead fell asleep while eating dinner in his high chair. In his groggy state (and with a crowd watching him), the smash cake didn't turn out as we'd hoped.  Fortunately there's always whipped cream in a bowl the morning after the party for good pictures!

I live in the tension between celebrations like this and my cancer. As a matter of fact, the large pressure dressing (from my skin biopsy) that was sticking out slightly from my sleeveless shirt and my instructions to not do any strenuous activity or heavy lifting were constant reminders of this tension.

While I no longer have chemo, I still have a number of doctor's appointments and tests. Even with the skin metastasis, my doctor's plan is to continue with the oral medications only at this time. And when my body recovers from chemo, I will hopefully have more options for treatment.

My nails no longer seem to be infected (although it will take a few months for the damaged portions of my nails to grow out). My hair is growing (I have three eyelashes left... but more are growing). My neutrophils are increasing (I hope). My cancer is stable or decreasing (I hope).

It is an understatement to say that this has been a difficult year for my family. We've had many moments of celebrating and many moments where we're holding our breath and bracing for the next impact. Earlier this year a friend said that a cancer diagnosis is a family's diagnosis. We're doing ok but sure could use an uneventful month. Can you please be praying for my family as we try to catch our breath? 

- my husband & son

- parents

- sister & family

- parents-in-law

- brothers-in-law and sisters-in-law & families

Thanks.

On his actual birthday

 

The Party

 

Opening gifts

 

The "smash cake" alternative... whipped cream!