Embrace the Space

I was extremely apprehensive about chemo #2. I knew what to expect and dreaded the outcome. My port was used for the process and I was so grateful for it. On the day, it seemed everyone in the room was having trouble with their veins. My chemo seemed to flow in faster and the whole process was easy.

I went in very hydrated. I have always struggled to get enough water into my day because I never feel thirsty and just forget to drink. I expected the ‘red wee’ like last time but it didn’t come. It’s weird because the red wee is so strange but you rationalize it because one of the chemos is red and they tell you it will happen. When it didn’t, I thought there was something wrong. I called oncology the next day to ask. Can you imagine? “Um, hi, it’s Kristina Vonow, I had AC chemo yesterday and I don’t have red wee.” It’s laughable. Apparently all was fine so I went with that verdict and will ask more questions of my oncologist when I see her next.

Within days my scalp became hot and inflamed. I sought advice from my GP and got a medicated cream for the sores that itched and oozed. 12 days after chemo, they are just starting to abate. I think my immune system becomes so low, it can’t even fight a little soreness of a hair follicle. My scalp hurts and itches like hell but the cream helps, a bit.

While I was grateful this chemo round was overall easier with fewer side effects, I have heard No. 3 and 4 can be grueling. I will see on Jan 9, but until then I’m savoring the little joys of life; early morning walks with Lynton, trimming leggy petunia flowers, light summer rose pruning, butterflies, Christmas, wonderful family and friends.

I have received the gift of ‘space’ in my life. I have space to think, give and receive love, smile, worry less, appreciate more, enjoy moments (and even micro-moments), laugh, and not get ahead of myself.

I am going to write a play based on one of my favorite books for young people. I have the time and I think I’m getting some creativity back. That’s the plan. I wonder if I can make it happen… J  

Hair Loss

Two weeks after Chemo 1, my hair began thinning. I’d had a short haircut but it was still very strange to have 40 or so strands in my hand if I combed my hair with my fingers. I cried. The physicality of it made the cancer somehow more real.

What they didn’t tell me was how much the scalp hurts through the hair loss process. You know when you wear your hair up and then let it down at the end of the day and it kind of aches at the roots? It’s like that, all the time, purely from the weight of your hair. 

As the days progressed, so did the hair loss, until I was too thin to go out in public without a head cover of some sort. I’d been experimenting with chemo caps and scarves in preparation but when it was a necessity… that was different. Three days after the loss began, I took the scissors to my hair and chopped it about 1cm all over. I shook as I cut but I hoped the pain would go. It helped but didn’t resolve it until I took the clippers to my head two days later. I wish I’d taken the advice of experienced friends who had told me to ‘just shave it off’. 

18^th Dec

I had a pre-Chemo 2, blood test this morning and saw my local GP. I have developed a few sores on my scalp (not uncommon) so she swabbed them and sent them off. With chemo pending, my immune system will be compromised again so I may need antibiotics to get on top of it. Also, after a few dizzy days recently, I can now stop taking my blood pressure medication and monitor it to see how it goes. This is all common too, apparently. 

It’s been nice to feel well this week and catch up with lots of friends and prepare for Christmas.

I have significant bald patches now and change up the scarf combinations daily. I often add a blingy brooch to sparkle it up a bit. I look forward to getting home and hanging out bald around the house. I don’t think I’ll ever go public with my bald head, besides how would I add the bling!

I'm not looking forward to chemo tomorrow but at least I know what to expect. 

X

Chemo and Port Surgery

Chemo

Chemo sucks!

I don’t care for those who say they ‘breezed through’ chemo. They couldn’t have had my cocktail.

Wednesday Nov 29^th,  Chemo 1.

As they administer the liquid benefit, they take you through a long list of possible side effects. It’s daunting but you know that it’s the only way to kill off this thing, so you know you have to just do it.

I had three steroid tablets and a large anti-nausea tablet and had to wait for an hour for them to take effect. They found a line in my forearm and hooked me up. Two different bags. It’s called ‘A/C’ and kills off the hormones that my cancer is feeding from.

It took about two and a half hours for the chemo to drip into my body and I was sent on my way with a collection of information and gifts from various groups.

Since then I’ve experienced a range of side effects including; dizziness, metal-taste, headache, a near fainting moment (followed by a drenching – maybe a huge hot flush?), tremors, and oh my, the constipation. No one could have prepared me for that.

There’s once again a curiosity and need to hear how others coped. I feel like I haven’t really done very well but how is that measured? Most seem to say day 1-5 are the worst so I’m expecting to feel a heck of a lot better tomorrow, just in time for surgery to have a port put in.

Every message and card, of love and encouragement fills me with joy. Thank you.

Monday Dec 4

I rang the Cancer Council yesterday and got some perspective. They have people ready to listen and I needed a good chat and cry with someone who could understand. I think it’s partly the speed of everything; less than three weeks ago I thought I was fit and well. I feel refocused and better.

Tuesday Dec 5 –surgery for the chemo port

I’d done the research and knew this was the right thing to do. My veins are hopeless at the best of times and chemo also shuts them down. It could get difficult for doctors and nurses to access my system and this also allows them to take blood if necessary. This little thing sits just under the right collarbone and feeds the drugs to near my heart.  

However, it was a general anesthetic, another thing.

I fasted from 6.30am but knowing I’d feel unwell, decided to take a ‘Maxalon’ before breakfast. I think this drug will be my new best friend. I couldn’t believe the difference and will start my day with it for a while.

The team at Modbury day surgery unit were so lovely. It’s a weird thing… sit here, come here, change into these, sit here, pee into this (just to absolutely make sure I’m not preggas! hahaha), wait here with these other nervous people about to go under for various things… walk into the operating theatre, see Dr Bev. And there she was. My surgeon. She is just the loveliest woman. Smile, warmth and hugs. She held my hand as I went to sleep.

Recovery. Done.

Another visit from Dr Bev while in recovery. All went well. More hugs and, ‘You’re doing really well’.

I’m not sure what they put in that anesthetic but I did not sleep one blink until 5.30am.

Bravery and Chemo

Sunday Nov 26

While there is power in knowledge, I shouldn’t have Googled.

In my last blog I said ‘one step at a time’, and last night I got ahead of myself and quite frankly, it scared the bejesus out of me. I haven’t talked about my fear much, I’ve painted the bravery picture but fear is all a part of this process.

“I have breast cancer”, was really hard to say aloud.

“I have breast and probably liver cancer”, was impossible.

“I have stage 4, metastatic breast cancer”, is unthinkable, but true. That’s its name, but I call her Pauline.

The bad news is it can’t be cured.

The good news is it can be treated, very well.

It’s like saying you have type 1 diabetes. You can’t be cured but you can live a long happy, productive life. There’ll be challenges along the way, but as one friend told me his friend has been ‘monitored’ for the last 20 years for liver cancer.

Lesson- Do not, I repeat, do not get ahead of yourself Kristina! 


Tuesday Nov 28
Oncologist meeting. 

Dr Jackie Adams is in charge of oncology at Lyell McEwin Hospital. She was great. I've been extremely lucky with all my (public) doctors and specialists. 

We chatted for a while about what I knew, what is needed and the plan of attack. She said I could have chemo next Wednesday, the day after I have my port fitted but I wanted it sooner. So it goes like this... blood tests and baseline heart tests today, CHEMO STARTS TOMORROW!, port put in on Tuesday next week. The first four chemos will be three weeks apart, the next eight, weekly. I'll be bald within three weeks. (Doesn't concern me if I'm killing Pauline.) 

We hung around to get the tests done and it was a long day. I was less impressed with the team who did the baseline heart test. The guy who put in the cannula couldn't find a vein and when I got in there they didn't talk to me. Just a few words like, 'nearly done' or this may take about ____ minutes. So I had to lay there, 'giving myself a good talking to' for what seemed like eternity.  

It's all happening fast and I have to stay 'in the moment' to cope. 
Managing, mostly.  

So here's to tomorrow, Chemo 1 day! Deep breath. I've got this. 

#4 To port or not to port

Friday Nov 24

I was looking forward to seeing Dr Bev again (breast surgeon). She's just really good and I feel like we connect. She told me it had been a busy morning. Nine new cancer clients! Holy cow!

Eager to get 'Pauline' (the name of my cancer) killed off, I wanted to know the plan of attack and how soon it could all happen. So here it is... 1) See oncologist Dr Jackie Adams on Tuesday at Lyell McEwin.  2) Start chemo asap.  3) Dec 5 Surgery to insert a port. (Na, I didn't understand what this was either.) There are three ways to get chemo in... through a vein eg hand, through a picc line which sits on the outside of your upper arm and has to be re-inserted every 3 months, or through a port. The port is put in under anesthetic and a 20c piece sized thing sits just under the skin under your right collar bone. It can be injected directly into and has a line taking it near the heart to get the chemo pumping. Apparently it is the best option, so we are doing that.

There is one more test before I start chemo. It's a simple ultrasound heart baseline test. There is no reason why I couldn't have my first round of chemo next week before the port is put in...

We went on to meet Deb the McGrath Foundation Breast Care Nurse. So much information and so much kindness. Funny isn't it, it's easy to handle the facts but when people are loving, understanding and kind, I get wobbly. She gave me the best hug I'd had in ages.

We left, armed and confident. We are on our way Pauline...
 

The MRI

Monday Nov 20.

MRI Day

Pretty sure Dr Bev’s intern, Paul was meant to organize my MRI on Friday but I didn’t hear from him.

At about 10am, I received a call from Deb, a Breast Care Nurse. Boy! Did that hit hard. Why would I need one of them? Oh, that’s right, I have breast cancer. It still doesn’t feel right to say that aloud. Weird.

She promised to ‘get onto the MRI’. Within 5 minutes of her call, Paul called and had organized an appointment for the MRI at Ashford, Benson’s at Ashford called to confirm the appointment and Deb called to make sure I’d got a call. Efficient!

Jack was home so he came with me for the MRI. Not too much to say there except I had to fast for 4 hours before and they needed to get a Dr to get a vein for the dye. It was like stepping into a Sci-Fi movie set walking into the MRI room. Strapped in, tubed up, headphones on for the jackhammer noise, I’m guessing it was smooth sailing.

No call with results tonight from Dr Bev. Does that mean good or bad news? Do I or don’t I have liver cancer as well? I’ve not been good tonight. Why hasn’t she called? Am I expecting too much? She set the precedent? If I have it, I have to beat that too… tricky one. If I don’t, hallelujah! I guess I’ll call my local Dr in the morning…

Tuesday Nov 21

My sooky la la day.

Still no word on the MRI.

I messaged my local Dr. She had no news.

I spent the morning calling or emailing my insurance, car lease company, car service centre and hairdresser. At times I got wobbly and was relieved when a friend came to visit. We laughed, cried and talked. It was lovely.

Still no word on the MRI.

Paperwork.

Another visitor in the afternoon. Just as lovely.  

Posted paperwork and took some more to the Doctor to fill out. She popped out and called me in: her last patient for the day.

I cried. She reassured me that MRI results take longer… 48 hours is normal and doesn’t necessarily mean bad news. If it comes to it, cancer of the liver is treatable too. 

I felt better.

Still no word on the MRI, but I can wait until tomorrow.  

Wednesday Nov 22
A friend invited me to an art group. It was nice to concentrate on a drawing. 
Message from the local Dr to see her at 2.30pm. 
The good news... suspect cysts on the surface on my liver are cysts. 
The not so good news... the MRI found a "few small spots" IN my liver. They can't be 100% sure they are cancer but due to the circumstances, they are assuming they are. 
The good news... it is absolutely nowhere else. Not in any lymph nodes, other organs, bones etc.

Big specialist appointment on Friday to get the low down on a treatment plan. Let's get started. 

I got this...!