Fran's Journal Fran's Journey of Hope

About 6 years ago I came across a song by Michael Bolton, called “Go the Distance” from the movie Hercules. Over the years I have played the song many times at great volume to let the words wash over me and encourage me through tough times. Over the past 3 months I have been soaking up the words again. They are so pertinent to where I am in life. The song talks about going through life’s journey, being strong, not giving up hope, to receive a hero’s welcome at the end. Because of the significance of the song in my life, Deane is going to incorporate the song in this website.

I had a liver ultrasound on Monday to assess the effectiveness of the chemo. Last week the endoscopy appeared to indicate that progress had been made. Unfortunately, the gastroenterologist that did the scope had not seen the stomach tumour before. Also most of the stomach tumour is in the stomach wall and not observable so accurate measurement of size and therefore assessment of chemo is not possible. The ultrasound therefore would give a more accurate indication.

Last night I was told that there had been significant increase in size of the liver tumours. The scan taken in August showed the largest liver tumour to be 1.6 cm. On Monday that tumour measured 4 cm. As no scans were done in October immediately before commencing chemo, it is not known if the chemo has been effective. It maybe that over the 2 months between finding the tumour and commencing chemo the tumour has grown to a size greater than 4 cm and the chemo has reduced its size or it may be that the chemo has not been effective at all.

The concern is that there is only a small range of chemo drugs that are effective against this sort of tumour, unlike other forms of cancer. So we will be continuing with the current regime with the hope that the next 4 cycles will be effective in reducing the size. Rick had been hoping that the scan would provide me with encouragement to continue chemo especially after 2 difficult cycles.

We were also advised that after this course of chemo the expectation is that there will be residual tumour mass that is resistant to the chemo. That there would be ongoing scans to monitor for new growth and that that is more likely to occur in a matter of months rather than years. Future treatment options would be explored at that time.

It was good that Mike was here at the time Rick came, as he was also able to ask questions at a time when we try to comprehend what this means for us. We have been given opportunity to consider our priorities, what we want to achieve, what provides quality to life, what are the things that really matter. Being given that opportunity is a gift that we need to be good stewards of and not fritter away any moments.

Every time I ponder my “Bucket List” the first thing that comes to mind is saturating myself with all the amazing, wonderful people who have crossed my path. To give them back love. To thank them for all they have done. Supporting me, sharing with me, opening their hearts to me, accepting me, encouraging me, loving me, giving me opportunity to grow, experiment, learn. That is an enormous task. Life has blessed me with so many experiences, so many people. Many passing ships, but I would so much love to see them one more time and tell them how that passing moment has impacted on my life.

Go the distance

I have often dreamed of a far off place, where a hero’s welcome would be waiting for me,

Where the crowds will cheer, when they see my face,

And a voice keeps saying, “This is where I am meant to be”,

I’ll be there someday, if I can go the distance,

I will find my way, if I can be strong, I’ll know every mile, will be worth my while,

When I go the distance I’ll be right where I belong.

On an unknown road, to embrace my fate,

Though that road may wander, it will lead me to him,

And a thousand years, would be worth the wait,

It might take a lifetime, but somehow I will see it through, and I won’t look back,

I can go the distance, and I’ll stay on top, no I won’t accept defeat,

It’s an uphill slope, but I won’t lose hope,

If I go the distance, then my journey is complete.

But to look beyond the glory is the hardest part; a hero’s claims the mountain by his heart.

Like a shooting star, I will go the distance,

I will search the world; I will face it all,

I don’t care how far; I can go the distance,

Till I find my hero’s welcome waiting here, in your arms.

I will search the world; I will face its harms, till I find my heroes welcome waiting in your arms.

Michael Bolton

It has been a couple of weeks since I have been able to journal. The time has been spent in my home away from home, the Holy Spirit Northside Hospital. If you don’t find me at Petrie, it seems that will be where you find me. I have my laptop in hospital now, so I can journal and hopefully find a data point to be able to download before going home.

As planned, second cycle started and I was admitted for better side effect control. Well that was the easy part in the end. Rick organised a combination of pre and post-chemo intravenous rehydration and 4 anti nausea drugs (Ativan, Emden, Zofran and Dexamethasone) that saw the first few days more pleasant than the first cycle and did not cause a migraine. It was also sooooo good having meals prepared and served without me having my anorexic brain think or make decisions. That takes me to Friday 21st.

Friday morning was home time. A friend, Andrew was coming to pick me up, which was exciting cos I had not seen him for ages and I so much want to catch up with all the wonderful people who have been there for me in the past and amazingly are fronting up again to carry me again. As the morning wore on, I was dragging the chain in getting ready because I was feeling a bit off, but thought it was only just me feeling nervous about going home and managing again.

The brain was having a good time telling me that I was a bad patient, was getting institutionalised, dependent, self piteous. Get your spunk together, everyone else copes at home. You are just making it into something more challenging than it actually is. Get your act together girl!

It all turns out that I should have listened to my body not my mind. I went home and bounced back into hospital 24 hours later 4 kilos lighter dehydrated from diarrhoea! It took 9 days to find out the cause and get things back under control.

After multiple faecal cultures, scopes for bowel biopsies, blood test, Clostridium bacteria was found to be the cause of my diarrhoea. Most effective weight loss program that I have found!!!! I have been on a combination of Flagyl, Merren, Vancomycin and Codeine Phosphate, with the later two being what I am still on. Even though the presentation was not normal, initially it was feared the Xeloda was the cause. This was a concern as it would have resulted in significant regime changes. Rick has ceased the Xeloda for rest of this cycle in case it did contribute.

Rick has used the situation to assess the tumour response to the chemo. He usually does a CTScan after the third cycle. As the first two cycles have been tough, he thought it might be a good time to evaluate and encourage me to keep going with chemo.

The endoscopy indicated that there has likely been decrease in stomach tumour size. A different gastroenterologist did the scope than the one who diagnosed me, but I was able to give him pictures from last time for comparison. Today I am off for an ultrasound of the liver.

It is a great psychological boost. This maybe all worthwhile! And maybe even being cancer free is really a treatment outcome!! It is easy to rattle the words off, cos that is what good cancer patients say and think. I listen to other cancer stories. They speak so strongly, so positively, they are heroes, they fought the fight and won. But I mean believing this deep in my heart of hearts. Perhaps it is really there but I have just got to find that out.

This is such a mind game. My body is working its every fibre to fight this, so I have to do the mind bit. Sounds simple and logical, but while walking the path nothing is simple and logical. It comes with struggle, hardship, heartache and choice.

During the last couple of weeks many times I have struggled with the feeling of having no choices, being backed into a corner. Chemo is the only treatment on offer to me, if I refuse that then I will die. Where is choice in that? Even blind Freddy knows that chemo is the answer. That means I have no choice. Sure I want to live. I don’t want to die, that is not the issue. It probably is a matter of having control of something in my life. It was the first time that I have said, “This is not fair”. But really I do have choice. I can say yes or no to chemo. I just don’t like the two options that I have been given.

That realised, I have to get back to the real task at hand. Getting on with the chemo and working out the best path to navigate the storms each cycle. Now that I have had 7 days chemo free and 2 days of being hydrated, I am feeling more alive. It is funny how fast I forget the downs of the last couple of weeks. I survived and what was all the fuss about. I can do this chemo, 4 more cycles, here we come!!!

Since last Thursday I have felt the surreal, “this is all detached from me” emotion slowly melt. Now there is a sense of deep sadness and a desire to cry. Cry about what? Anything and everything! I am grieving for what I have lost and may still to lose. It feels like a person close to me has died. I cry if I hear something sad that has happpened to someone else. The cat was sick on the weekend and needed to have leg abscess drained, and I cried. I have lain in bed this morning feeling sad because I am off to start chemo again today. I cry because I am worn out wondering how I can keep facing this chemo. I cry because it is hard to accept that I may die and leave Mike (and everyone else too), just when our lives are the most contented and positive. I cry because there is a new manger in the position that I was hoping to have, but cant because I not reliable enough to work full time at the moment. I cry because there are such exciting opportunities at work for building up the company, that I have dreamed of over the past year and now I cant do them. I cry because every moment of the day I have a bad taste in my mouth, that no food tastes the same, that all food repulses me, that I don’t have the drive to go out and walk the dog every day. I just wish Icould feel like I used to. Not feel tired, not feel nauseated, not have to plan my day around managing side effects, not have to be a slave to tablets, not see handfuls of hair fall out every time I touch my head. I wish I could go out and do some retail therapy. But do I really need any possessions. Why collect more meaningless things just to feel good. Where’s a nice glass of wine and cheese platter? Yuk! I cry because I don’t have the motivation to make Mike’s lunchand juice in the morning, nor cook his meals. I feel like I am bludging and that he has to put up with all my crap not through any fault of his own. Icry because the house is a mess, but I don’t really care. I could just sit and let life pass me by. Why fight?

The down is that a side effect of the Xeloda is excess tear production. While that sounds like I could cry easier, it actually is the opposite. My eyes feel dry, crusty all the time and when I go to cry it physically hurts all around the eyes!!

The exciting thing is this is part of acceptance and healing.

I don’t tell you this for pity. I don’t want you to treat me with kid gloves. I don’t want you to walk on egg shells with me. I want to hear your crap. I want to know what matters to you. I want to be able to encourage and get beside you when things trouble or get you down. I want life to go on. This is healing. It is an important step for me to pass through. And I will pass through it. I am not depressed or suicidal. Nor have I given up. I think that for 3 months I have had to go on emotionally, mentally and physically in the strongest way that I could to survive. My body just wants me to give it an easy time.

Many great friends have reminded me to get “me” time. I will and must do that. It is a bit of a chore trying to organise it. Rick is going to write a letter for me so that I can organise a regular massage. I think that will help me in relieving the head, neck and back tension that hangs on. I am searching for a masseur that will come to the home. That will not do the alternative therapy preaching stuff, cos I am not in to that, and for a masseur that will be skilled enough not to do damage. So that is a task to develop a rapport with someone that I will only meet over the phone initially. There was someone but as she will have to travel an hour to get to me, she is going to charge the earth, so I am trying to find an alternative.

I do still see my psychologist, but with Christmas coming up I have the next appointment in January. I know that if I crash she will make additional time in her schedule to see me at short notice, but I don’t want to abuse that privilege.

So that means I have all my wonderful family and friends to debrief to. I find it hard to ring people and dump tings. I don’t want to make others feel sad. I appreciate that everyone else has the same lot of baggage that they carry. I know that their baggage is their reality and IS just as important as mine is to me. I don’t want to wear others out. This might be a bit of a long journey and I need all the resources I can get to travel. I need to find the strength within myself as well.

Then I get on to this website and see all the amazing people who have taken time out to send a message. This makes me cry as it is overwhelming the love that others give. It carries me, it empowers me. It fills me with a sense of hope. I am ever thankful. I have to do this. How ungrateful I must sound. What a whinger.

God is ever near and is my strength. This is all possible.

I thought I would waffle on about chemotherapy, for those that are not familiar, or want to have more insight into myjourney. Remember that there are many forms, drugs, treatment regimes and methods, so this is only about my regime and is not reflective of all chemotherapy treatments.

The regime involves one day of IV chemotherapy, followed by 14 days of oral chemotherapy and then 6 rest days. The IV drugs used are Epirubicin, which is an orangey red coloured drug. It makes you pee red urine for the rest of the day! The other one is Oxaliplatin. These are both nasty ones and make me suffer the worst side effects. The oral one is Xeloda.

The Oxaliplatin makes it so that if I ingest anything in the first 9 days that is colder than lukewarm I get pins and needles in my tongue and throat and my throat spasms. It is annoying, cos you pour something at room temperature and it might or might not cause the same. Also when you feel sick on a hot day you want something cool and soothing but you cant, it has to be warm!! With the foul taste that it leaves in the mouth I have found that I can generally taste sweeter things than savoury, but most sweet things and drinks are best cold. Therefore the first 9 days are a BIG chore in regards to nutrition.

The Oxaliplatin also causes pins and needles in your hands and feet if come in contact with anything cold. Therefore I have to wash my hands in warm water and get other people to take things out of the freezer or fridge. Generally I get the things and be very quick about it, but if I have to hold something for a period of time or it is hard to get out I get Mike to do it.

This drug is also thought to be the cause of my intermittent partial loss of sight in my left eye. The Oxaliplaitn is toxic to nerves. Rick is puzzled about the eye because it is only meant to affect small nerves, but for some reason it annoyed my suss left retinal nerve. Thankfully I don’t have permanent visual loss. We will continue to monitor that. Rick is going to reduce the dose to reduce the side effects. Generally the nerve irritation resolves after completion of the chemo, or in my case about 9 days after IV but there can sometimes be residual damage. I think this is the one that you can only have a certain amount of in a lifetime because of the accumulative damage that it can do.

The Epirubicin causes nasty vomiting, nausea, taste problems and hair loss. Since Thursday my hair has been falling out and is starting to look a bit moth eaten. That is frustrating and also a bit of a downer. Every time you wash your hair, dry your hair, rub your head, sleep, you find a lovely mat of hair falling out. I still look reasonable, but am considering shaving it all off rather than looking moth eaten. Especially if it continues to fall out at this rate. It is coming on to summer, so I really don’t need my hair to keep my head warm, but would need to be careful with getting sun burnt.

Before giving the chemotherapy, I am given IV dextrose solution and Dexamethasone (dex) and Navoban. The Dex is a steroid to reduce inflammation, stimulate appetite and to potentate the anti nausea drugs. It is taken for about 4 days after the chemotherapy (chemo). As nausea and anorexia was a big problem with the first cycle I am on it before the next chemo to help reduce symptoms. I think it also is helping at the moment with the cancer pain. As the chemotherapy is killing the cancer cells this causes local irritation and swelling and I have been getting a bit of pain in the liver and stomach. Since being back on the Dex, I have had relatively little pain. Yahoo!I I really don’t want to take this one for a day longer than necessary because it is not good for you and can have permanent side effects.

Navoban is an anti nausea drug. It ? caused my migraine last time. It may have been stress related, but Navoban is known to cause migraines in people who have migraine history. Because of that, Rick is changing that part of the treatment. I am not sure if he is using another drug or just going to increase the Dex, give me lots more IV fluids after the chemo and keep me in hospital to treat any migraines. I have the Navoban orally for a couple of days after chemo, then continue with Zofran, another anti nausea drug for the rest of the cycle.

They have added in Nexium, which is used for reflux and stomach ulcers in hope that that might also help with the nausea, anorexia and stomach pain.

The oral chemo is Xeloda. The dose is very low, so I am not having too many horrid side effects from this one. It caused my mouth ulcers and alters my sense of taste, but is nothing like the other ones. because it has to be taken with food it can become a chore to swallow and keep down, especially in the first week.

I hope this journal did not sound too negative. I don’t want you to turn off from reading what I write because it makes you sad etc. I am hoping that it gives insight and sometimes may even be a source of encouragement. I don’t want to suck you dry, nor am trying to extract pity. I don’t need that. So please be honest with me, or even tell me things that you want to hear about.

What was that I was saying about balance! When I wrote last on Tues 11th, I was developing a fever, but thought I could manage the situation. My niece, Heidi who is an Oncology RN was quietly nagging me by SMS all day to do something and not sit on my rising temperature. So off to the GP, who could not find a cause for my temperature of 38, so she sent me off to hospital for investigation. The protocol is to have blood cultures and 48 hours of intravenous (IV) antibiotics to kill off a broad spectrum of bacteria. Having the low WBC count meant that symptoms of infection are sometimes masked and the root of the infection may not always be found. My blood culture was clear and no cause was found.

While in hospital, my oncologist (Rick) wanted to get better control of my nausea, so I was also on IV fluids and anti nausea medication as well as steroids to boost my appetite. It was great to get re-hydrated the easy way – by drip without having to drink!!! Rick said that I can go in anytime to get IV fluids to take the pressure off drinking when I am nauseated.

Rick also had discussion with me about my first cycle. He said that I had had it tough and he could refine the treatment regime to reduce the side effects. So next Tuesday (18th) I start my next cycle and will be admitted for ongoing managementof the side effects. Also he is going to reduce the dose of one of the IV chemotherapy drugs and change and increase the anti nausea medication. This has made me more positive about going back again. Even though I would have gone back anyway, I was getting quite anxious about the next treatment and how I would cope with 5 (or however many) more cycles that I was going to have. I was seriously questioning if it was worth it, particularly if the treatment was not effective.

Being in hospital also gave me opportunityeach day to chat with Rick and gain greater faith in him. I was able to ask more questions about what was and might happen. My numbness is really melting and the reality of the situation is becoming very real. This has led to my need to know more about the chemotherapy.

We had discussion about potential outcomes and the indicators for good outcome. Rick was very optimistic that I fitted in to the 2 positive indicators for a good outcome. As I was young, healthy, fit, working and the liver secondaries are still comparatively small, it increases my chance of a good outcome. He explained that a good outcome means two things – the cancer will be reduced by the chemotherapy and that he will be able to buy some more healthy time for me. He was not talking of cure, he was talking about being able to function and enjoy life for a period of time longer than if I chose not to have any treatment.

He said if it was as easy as taking some vitamins or minerals or having reiki and the other things that kind people have suggested I do to be cured, then he would most willingly give them to me to spare me going through chemotherapy. Rick said he was open to any thing I wanted to try, but warned me that they are not validated cures. I have chosen to continue on the chemotherapy path and to trust Rick. He did though order multiple blood tests for trace elements, minerals, vitamins and other bobs and bibs (8 vials of blood) so that if there is any deficiency we can consider this as an adjunct to the chemotherapy. But at the moment, swallowing the chemotherapy cocktails and the other drugs to stop the side effects is a chore, I doubt that I really want to swallow anything more than I need.

I do appreciate others suggestions as gestures of trying to help me. The only problem is that I perceive that the person is telling me that they think I don’t want to be cured if I don’t take on their suggestion. The thing is that I have had so many well meaning people tell me of cures, I could be full time doing them all. But I am a more conservative medicine person, and will pursue the chemotherapy option.

This is probably enough rambling. I plan to do another journal about the chemotherapy drugs that are part of my regime, for those who are interested in the next couple of days. If you don’t hear from me for a few days, I will be in the Holy Spirit Northside Hospital. I am not sure if it will just be overnight on Tuesday or longer.

Will chat again soon.