Surgery Tuesday

I finished chemo nearly three weeks ago and there has been a slow and steady improvement in my health. It’s like watching your hair grow, you don’t notice but all of a sudden you’ve got regrowth that needs attention or you’re looking untidy and need a trim. My health improvement is like 1% each day but if I look back two weeks, I can see I’ve come some way. But I’m impatient.

This week I’ve started walking further and sometimes twice a day. The oncologist explained that my fluid retention isn’t the regular type and it won’t respond to the fluid tablets the local doctor gave me. Chemotherapy causes damage or thinning of the veins and fluid can leak into muscle tissue. The best way to reduce the fluid is to move the muscles once the veins have had a chance to heal. It’s just this week I’ve noticed improvement and I’m very relieved to not be quite so ‘puffy’.

On Monday I saw the intern of my oncologist. Up until now, my emotional meltdowns have been in the privacy of my own home. I call them sooky la-la moments and reckon they’re healthy. In order to manage emotionally, I chunk my life into sections and deal with each bit as required. I have learned to stay ‘in the moment’ as much as possible and generally cope quite well. I spoke with my Doctor recently about tapping into some counseling after surgery as I want to talk it out and learn some meditation techniques. So there I was, with the intern, a lovely fellow. He told me they had decided to go ahead with the liver biopsy after all. I told him I had been told they might not be able to biopsy the spot as it’s too small but he assured me the ‘team’ had discussed it and they thought it was achievable. 

WHEN?

“There is no hurry, we can wait until after surgery. When would you like to have the biopsy?” he asked.

I don’t even want to have a liver biopsy. The thought of someone sticking a bloody long needle into my guts makes me sick.

“Ummm”, I mumbled. My brain went into overdrive. When will I feel comfortable to lie on a table and be needled after having a boob removed? “I don’t know”. Next year? Never?  

“Perhaps if I suggest? Do you mind if I suggest?” he asked, clearly with an idea.

“No, go ahead”, I trembled, hoping it was months away.

“Let’s do it this week?” he said with a smile.

“NO! No, no, no, no! I can’t!” I exclaimed as I began to cry, and then sob, really sob. I hiccupped my way through, “I… am just… coping with the …thought of having… the surgery. It’s too… much. I can’t!”

He apologized profusely, realizing he had pushed too hard. I think his curiosity had got the better. They so badly want to know what this liver spot is. I just want it on hold until I deal with the breast cancer.

Once the dam had burst, there was no stopping the flow. It was all too much. I thought I was there to start hormone therapy so I mentioned that and the intern scurried away to get the prescription signed by my regular oncologist. He must have told her about my emotional outpouring so she came in with puppy dog eyes and talked me through the whole liver thing again.  Hormone therapy can cause body and joint aches and tiredness (like I need more of that) so they decided to start that in four weeks too, once I’m over the worst of the surgery.

Still crying, I called my local Doctor on the way home and explained what had happened. She told me she would have lost it too. I felt normal. We decided to act on the mental health plan and she booked me in for the next morning. When I saw her, the counselor who works at the surgery had a cancellation, so I got to see her too. I left feeling supported and understood.   

So, next Tuesday May 29, Pauline will be gone; I will have my left breast and about 14 lymph nodes removed. I will be in hospital overnight and probably allowed to go home the next day where I will have a nurse visit for a few days. I wanted both breasts removed, but I’m a higher infection risk because of chemotherapy so one will have to do for now.

Deep breath.

This too shall pass.

X

Kristina

Goodbye and Good Riddance Chemotherapy! Hello Surgery.

I’ve always hated liver.

Mum used to try to get us to eat it because it was ‘so good for us’ by cooking it with onion and smothering it in gravy but it was still horrible.

My liver MRI from a few weeks ago was finally compared to the one I had three months ago and there appears to be more small spots in my liver. It’s apparently hard to really tell. The good news is they’re not breast cancer spots because they haven’t responded to chemotherapy, the bad news is they could be another metastasized cancer from somewhere else. Synchronized swimming is one thing but synchronized cancers, unbelievable!  

My oncologist is now ordering a raft of further tests to investigate. With a family history of a few different cancers, she’s ordering a colonoscopy, endoscopy and a liver biopsy. There will probably happen after my breast surgery but I’m feeling overwhelmed. 

The positive news of the day was that my breast cancer has continued to respond to treatment, including my lymph nodes which are no longer enlarged. 

(Sigh)

As of today I am meant to have 2, ‘Taxol’ chemos to go; I’ve had ten. My feet are balloons and there is some talk I may have had my last chemo today. Taxol is accumulative so symptoms and side effects can get progressively worse. My body will be the judge next Monday and the decision will be made whether to stop. Nine Taxols are minimum and more than that is bonus. My nurse today told me they rarely get to twelve and that made me feel better.

So with this big news today I have come home, had a cry and got on the phone to Deb, the breast care nurse who works with my surgeon. She’s amazing! (Thank God for the (oooh ahh) Glen McGraith Foundation.) She’s going to see if I can see my surgeon sooner as I wasn’t booked until after my 12^th week of chemo.

Surgery will happen within four weeks of chemo finishing. I’m having a mastectomy. I want a double but they are reluctant to take healthy tissue. We will see… watch this space.

Love to you

X

Kristina

Daily, Weekly, Annually, Every Now and Again

Daily, Weekly, Annually, Every Now and Again

Daily

Every day I have support. I am one of the lucky ones and I know it. Messages, calls, pop ins, meals; I have a bunch of friends who have come out of the woodwork to support my cancer process and my family. I am forever grateful. I am a ‘people person’ and I need this love. I don’t know how anyone would do this alone. It’s my ‘love bank’ and it’s in the black!

Weekly

I have moved on to weekly chemotherapy. As I write, I’ve had four of the 12 sessions. It’s accumulative so you don’t quite get over each week and they hit you with another dose. There are many side effects, including tingling or numbing of fingertips and toes, which may or may not be reversible. Thankfully that has evaded me. I really have had no side effects apart from a day of diarrhea each time. This time (No. 4) I have an appalling dry mouth and feel like each limb is twice as heavy as usual. This was the main reason for a mega meltdown today but I’ll bounce back tomorrow. My hair has started to grow back. You would need a magnifying glass to see it, but it’s coming… white, fuzzy, soft stuff!

Annually

I was lucky to celebrate my 50^th birthday recently. It was a wonderful evening with people dear to me and I felt very appreciated and loved. But turning 50 isn’t a magical line that once crossed the health checks begin. I got cancer at 49 and probably had it growing much earlier than that. I’ll never forget the words of one of the nurses in the ultrasound room when I was diagnosed, ‘Why haven’t you been having mammograms?’ (Maybe I was looking old that day? J) My thinking was that women start those when they’re 50, I was 49 with no family history.

My point in this rant is to get a health check each year. Perhaps the week before a birthday is a good time and then you can really celebrate that birthday. Don’t start at 50. Start at 18 or 21 or whenever, but START! Learn about your body before the learning is so steep it rocks your world to its core.

Every now and again

I lose my shit. I hate being here, stuck in this diseased body, feeling unwell. Every now and then it’s all too hard and I cry, really cry. I get angry and wonder what the hell this is all about. I feel sad and sorry for myself and I take it out on those who love me the most.

This is normal.

This is when I draw on the ‘love bank’.

And it doesn’t last long and I get on with it again.  

X

Kristina

No Sugar Coating

Look Good Feel Better

Last week I had the chance to go to this great workshop at the Royal Adelaide Hospital. It’s a chance to meet fellow cancer patients and be taken through a make–up makeover by volunteers with years of cosmetic industry experience. The products were donated from every cosmetic house imaginable (from Dior to Maybelline) and we got to keep everything selected for us. A wig expert came in and we got to try on some different styles.

It was a giggle and I even exchanged a number of another lady who was really scared about starting AC chemo. If you know anyone with any type of cancer, try to encourage them to attend one of these days. Great fun. 

Oncologist, Chemo No. 4 and antibiotics

My oncologist told me again that my next chemotherapy depends on the results of my liver scan on Feb 19. If nothing has changed in my liver, the ‘spots’ aren’t cancer and we proceed with weekly chemo (paclitaxel) as planned. If the spots have shrunk, they were metastasized breast cancer and we will need a different tack. This could be chemo in tablet form or two more AC chemos (urgh!).

She changed my antibiotics as they were causing me terrible heartburn and I went on to my chemo infusion.

This ol’ No. 4 hasn’t been my friend. Quite like No. 1, I have felt really unwell, shaky, nauseous, dizzy and wobbly on my feet. As I write, it is the end of day 6 and I thankfully feel a little better. I looked up the side-effects of the antibiotics I have been put onto and there they were; nausea, dizziness etc. I can’t win. 

Petrol Station

I live in a relatively small community and it is rare to be at the local shops and not come across someone I know. I had to go to the city on Saturday morning. I felt so unwell but I’m more stubborn than sensible and went anyway. I was on my way home and needed to stop for petrol at the local. An ex-student from many years ago saw me staggering along to pay and wound down her window. It was all I could do not to cry as she asked how I was. I just smiled a weak smile and said, ‘It’s not a great day today’. She spoke lovely, kind words but I was so out of it, I barely responded. I smiled, paid and got home to bed as quickly and safely as I could.

Later that afternoon, she phoned to check on me. Then I really did cry. Her kindness was so beautiful.

There is a quandary with this disease. The treatment is horrible and there really are days when I wonder if there’s going to be an end to the ‘unwellness’. It’s debilitating and really sad. In the long hours in the middle of the night, I even think about what people will remember me for.  There are many other days, closer to the next dose, when I feel quite fine. The other thing is that one dose can feel okay, the next hits me for six. There is no way to predict how well or unwell I may feel.

I am learning to be real and accept help but it doesn’t come easily to me.

I must be patient, stay in the moment, enjoy the space and take one step at a time. 

Much Love 

Kristina 

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