Coming to terms with metastatic cancer

We've received confirmation that the spot in lung was a small single 6mm synovial sarcoma secondary tumour. This news was expected although still difficult to receive as there is always an outside hope that it is something else. I'm swinging  through the angry, sad and denial stages with this and still struggling to rationalise and come to terms with the development and poor prognosis. Although its very slow moving, this  disease  its unrelenting and very hard to eradicate.

In response to my post on the Synovial Sarcoma Survivors Forum "coming to terms with mets" a friend  provide this response which I though was worth reposting:

Hi Gary, there are several sub-groups in the mets club. 

One is made of people who after lung surgery never see the disease come back. I met a lady online who was still in remission 15 years after her lung surgery. Obviously, this group has very few members as far as I can tell but I am still hoping I can join it one day... 

Then there is the group of people who keep having recurrences but are able to go back into remission for a while every time. An example is me or Gina who was diagnosed in 1991, had 7 lung surgeries, was 5 1/2 years stable with yondelis and posted in July this year on the Sarcoma Alliance website (that's 20 years fighting with this disease!).

Then there is a group of people who get a "second chance" in that they are told nothing can be done, surgery is not possible and their prognosis is death within a few months but they get into a trial or find a bold surgeon and somehow go back into remission and improve significantly their prognosis. One of this patient is Hema who had some success with the NIH trial, went from 17 mets to 3 (the last 3 were removed surgically). 

Then there is a group of people who can't get into remission but are eligible for trials and are able to keep stable for a while, sometimes several years like in Gina's case. In the meantime there is always the hope that some miraculous treatment will come out. 

And finally there is the group that is not even eligible for trials and is only eligible for hospice :-( I am hoping to never join that group. I am not sure I can face death in such a direct way... Elodie

The few positives that I have at play here, is that there was only one small secondary tumour. This has been slow to grow and generally you don't get one you get many secondaries. It was successfully removed with clear margins and it is possible to get a curable outcome from this surgery and for it now to go into longterm remission. The recovery from surgery has gone well and I will be physically fully healed in a couple of weeks. 

Until I hear different I claim membership to Elodie's Met Club 1, if another medical procedure is required in the future I'll confront that when the time arises. I don't think you should bury your head in the sand with a poor prognosis, although it seems pointless getting ahead and over-analysing what may occur. For all of us there is uncertainty in the future and I guess the best option is just get on and enjoy life. 

 Gary 

Day 2 - Ouch

Ouch that was sore, I certainly don't recommend operations that involve going through the rib cage and rib spreaders.

Other than some pain issues overnight and this morn, the op and recovery has gone very smoothly. They have done a thoracotomy and a wedge resection on a suspicious spot which is now away for analysis. Unfortunately it wasn't a pea but a clearly defined fleshy hard lump approx 1cm in size. During the process they also had a good look around right lung and couldn't find anything else out or order. Good news issue was detected early, just 1 spot and they taking an aggressive curable approach taking large margin with objective to curing this completely. There is an outside hope that this is unrelated to the Synovial Sarcoma.

Another 4 days in hospital and I should be out for Christmas. Thanks for all the prayers, txts, emails and comments in support. Although I facing this personally I feel really well supported and all you guys have my back covered.

Thanks

Gary

Long Day

Gaz out of Surgery. He got taken in at 4.30 and out near 8. Spent a long time in recovery to get his respirations up at at a good level. Back in Ward at 10pm and having a cup of tea which he is thoroughly enjoying. He is looking forward to some sleep..Kat

What a difference a spot makes

What difference a spot makes

What difference a spot makes

Following a routine scan my oncologist has reported a suspicious spot on my lung and the need for a priority surgery. I'm currently lying in my hospital bed an hour before surgery. The procedure involves a shark bite (smile) cut under my right arm and gaining access to lung through rib cage. Apparently its a bit painful. They use a fancy stapler to nip the lung and resect the suspicious spot for analysis. At the moment just focused on getting through the procedure and not thinking too far ahead.

Real gutted with this setback, things had been progressing so well and feeling great. They've got on to it quickly and hopefully it's a stitch in time or the spot is just a pimple or a pea and they are getting over excited over nothing.

Will keep you posted.

Gary Taiaroa
Ph: 021 824 276

Sent from Mobile

Work is Good!

I've just started back workIng full time which is going better than expected, it's great being back in a work environment, it's fun and gives purpose.

Initially I had some concerns if I would make it through the day as still managing pain issues, but I've found that as I have got physically fitter and into the pace of business that the pain has reduced and not a hindrance. The pain is still there and significant but if you keep busy with positive stuff it can be pushed back and become secondary. Since my last post I had substantially increased and changed my pain regime, and now that I have pain in check I'm starting to reduce the RX dosage. I have reduced my work role, responsibilities and only working 4 days but there is certainly enough meat to keep me professionally challenged and stimulated. Getting back into the workforce after a 15 month break due to treatment has been yet again another challenging stage which I'm please to report that I've got through.

Pic attached outside a random house whilst walking to the Rugby World Cup Final. I attended 7 fun filled games at this year RWC the highlight being New Zealand beating Australia in Semi. Go the ABs!!

How to fix a broken spine

The meeting this week with my spinal surgeon went well, I really like the guy and find him exceptionally smart and very engaging. No more surgery for me at the moment the risk vs. benefit vs. need for my body to rest and recover after a year of medical attention means that its just not worth it. He mentioned that Pain Management could be a life time issue, but hopefully it will improve over next 6 months. Surgery is an option but it's major and would involve more metal-ware securing the broken rods, including new metal-ware on the inside of the spine :-P. The break is the suspected source of my daily pain, but its not certain and surgery may not fix the issue. The fix would make the bottom of the spine very strong and rigid which may transfer issue and cause problems higher up on the spine. Good news current broken structure although moving it appears stable and strong. My current pain regime is working well and although I'd hoped to come off this, alas no.

I'm all ok with all this and pleased to have some certainty and clearer understanding of the issues involved. I’m still coming to terms with what this means lifestyle wise, as current state restricts physical activities no Physio, no Golf, no Skiing etc etc.

So how to fix a broken spine?.. I've learnt through all this to enjoy the abilities that you possess today, were all carrying around our own "broken spine", often the only thing that's holding us back is our attitude to our situation and not getting on and enjoying life.
Today I can......

Broken Spine Pxt

Information made the difference

Gary is a successful businessman who is married and has three teenage children. He is also someone who can tell you everything you need to know about synovial sarcoma – a rare form of soft tissue cancer.....
Read more

New Synovial Sarcoma Support Forum

If your family is dealing with Synovial Sarcoma, this support group is for you. The purpose of our community is to provide patients, families and friends affected with this cancer a place to find support, information, and most importantly a place to connect!
Synovial Sarcoma Survivors forum...Click here

Montye Gardner - Keep Shining Your Light

Montye connected with me through this blog and gave me some wonderfull advise and support before going into spinal surgery. Her synovial sarcoma was in her spinal column and underwent similar surgery prior to mine. She sent me some very long emails about the impact and day to day post op recovery and at the time provided me with amazing support and reassurance as I plunged into the unknown. Unfortunately Montye lost her battle with Synovial Cancer :-( 
More about her and her battle cane be found here:
Tribute to Montye
Montye's Blog
Montyes Cancer Blog

On 19/10/2010, at 3:16 PM, Montye Gardner wrote:
Thinking about you this week, I know you are just a few days away from your second surgery. I will be praying for you on the 20th and sending you healing positive thoughts. Stay strong and take recovery one day at a time... just think after one week you will start to feel a little better, after two weeks you will be up and around (slowly but moving) and three weeks you will start to feel a little more normal... by 6 weeks you should be back to your old self just be sure to take it easy... my muscles and back were still sore until about 5-6 months.


Remember - This too shall pass.

Wishing you all the best this week,


Montye

Lunch with Whanau

Out in the big wide world

It's interesting the challenge of getting back to "Normal" after being out of circulation for a year. My main issue is back pain and the issues surrounding this. Life is fantastic, but busy and at times overwhelming.  I am back up to see both my surgeons (Sarcoma specialist and Spinal Surgeon) in a couple of weeks and hoping that they will hatch a plan to solve the post op issues. The titanium rods in my back have snapped and this causes pain and seriously limits activities and I'm only working part-time. I find it frustrating as I cant do much to fix myself and just need to wait for the body to fix itself or for the surgeons to implement a plan. Its not life threatening and just a mechanical problem and as a result I may not be high up on priority lists. Pain medication works well and now is an essential part of daily living. I have an underlying concern  that this may become chronic and unresolvable. Initially I was please that surgery was not offered too fix this but now I'm ready to get back on the table. It doesn't seem to be a major op and hopefully it will be offered and will fix pain issues.
Bye for now
G :-)  

Moldy Peach post Chemo head

Stacey Kramer: The best gift I ever survived

Stacey Kramer offers a moving, personal, 3-minute parable that shows how an unwanted experience -- frightening, traumatic, costly -- can turn out to be a priceless gift.

http://www.ted.com/talks/stacey_kramer_the_best_gift_i_ever_survived.html

Another Clear Scan

Another clear CT Scan last week showing no evidence of re-occurrence of the primary tumor and no secondary cancer (Mets) found. Yeeha I have got through my first post treatment party which included a stage at the party of being DJ, whilst dancing on a table with a Zebra head on, this was quite difficult and pleased my physio wasnt there.  I am progressively getting back into business doing 10 hours a week and even have some hair growing back. Life is good!    

How to break your spine?

My routine checkup this week of my new fancy titanium spine had an unexpected result on the X Ray..... "its snapped" pronounced the young Registrar who left scratching his head and unable to answer any of my questions on how did it break? how do you fix it? What are the current risks with the break? All he said was to take it real easy with rehab & work and that he will refer this through to the guru's and that they will get back to me shortly on a plan of attack. Although only a mechanical fault this is really annoying on top of everything else, and puts me in a hiatus with recovery and getting on with life. I also suspect in buts me on the path for more surgery, so excited about that, not. 

Titanium Physical properties
A metallic element, titanium is recognized for its high strength-to-weight ratio. It is a strong metal with low density, lustrous, and metallic-white in color. Commercial grades of titanium have ultimate tensile strength of about 63,000 psi (434 MPa), equal to that of common, low-grade steel alloys, but are 45% lighter. Titanium is 60% more dense than aluminium, but more than twice as strong. Certain titanium alloys (Used in Medicalimplants) achieve tensile strengths of over 200,000 psi (1,400 MPa). 

Out into the light

It's fantastic being out of chemo prison and back in the land of the living. 2 weeks out of the system and today is when I would normally be checking into hospital. All upside from here. It gets a little frustrating as physically and mentally I am not capable of doing all that I would like to do and also realization that it will take months to recover physical fitness. I have just started back at work and doing a few hours here and there, which is exhausting and most days when returning home I need an afternoon nap to recover. It's fantastic using the grey matter again and very pleased that it still works. Just need to keep reminding myself to take it easy and to pace myself.

Restarted rehab work at ISIS to straighten and strengthen back and spine. They i.e. Jo is fantastic and it was encouraging to see that I have made progress since the last time I was up there a couple of months back. I am now convinced that physically I will be able to do all that I want todo (including skiing, chainsawing, golf, terpsichore) and this is better than I though going into spinal surgery. I am not disabled.

I have a couple of key scans and consultations with specialists in the next 2 weeks and hopefully that they will confirm NED status and that back/spine prosthesis is hanging together. I still have my Hickman line in and expect to have another blood transfusion to spike up the blood before it's removed. I love that blood and its great for improving the energy levels.

I have a couple of big parties planned in June and July and I expect to be kicking my heals up.
June is "I am not a patient month" and I'm very excited about that.

Ciao
Gary  

That was then ... this is now

7 Months on since back and spine operation. The eye popping war scar is looking far more presentable.

Autumn Ote catching falling leaves

Is that a light at the end of the dark and long tunnel

24 days before I complete the chemo treatment which is hopeful the last medical procedure for my sarcoma. Post will be some recovery and a CT scan to get sign-off that I am clear of cancer for now. Then from mid May I plan to step up the physical recuperation of my new back and progressively get back into the business.
I am very tired from all medical procedures and after bad chemo cycle 3 one of my consultant callled this 'fatigue', not to be confuse with 'sleep tired'. Cycle 4 has been a great cycle which has given me confidence that I will complete the whole procedure and not melt down along the way. We are very well geared up with support structures with treatment and this makes a big positive difference. I am now targeting to come out of treatment strongly and for it to be weeks not months to overcome most of the side-effects of Chemo. Its going to take longer to recover physical fitness and strength and thats fine, as a a key factor will be final healing with the spine and development of the core muscle's. The rehab work at ISIS and DIY landscaping and construction have been great at straightening me up and getting a base fitness, but still a way to go and I will need to do this over a longer period, Christmas summer holidays may be a good target date to do something like this: http://www.doc.govt.nz/parks-and-recreation/tracks-and-walks/canterbury/aoraki-mount-cook/mueller-hut-route/.

My top priority post treatment is 'health'. My body created or at least supported the rapid development of cancer and I believe my lifestyle contributed to this. So in next few weeks I'm going to use the Hauora wellness model, here , to see what changes I need to make. My hope this will improve my Joule de Vivre, not reduce.

Morning of 2nd day in hospital chemo cycle 5, had a great sleep last night and have food on board. I am currently unteethered from drugs for my 1 hour in 24. Soon to have a shower and a few laps of the ward, luxury.

Ciao for now.
Gary

Sent from my iPhone

In for chemo cycle 5, 1 to go

Gazza's getting his workshop sorted

and its looking good!
He now has his own man cave and can be found out there at all odd hours fixing things..putting up spouting and installing our new water tank which is very exciting.And for those of you wondering how he is doing all of this..he does take it slowly and comes in very tired and sore but VERY pleased with himself. I like him out there doing this its good:-)
We are pleased only two more chemo cycles to go and we can start practicing some normality again.
Light at the end of the crawl space..which reminds me I was in the ceiling this last week cleaning out old batts and rat poo.YUCK!
The roof is off our house at present too which makes for an interesting Autumn.
Hopefully the rain will divert this week and we can get it sorted.Ciao KAT

Thanks to the random dude in Grafton for giving me his blood

Blood transfusion today to overcome a progressive drop in hemoglobin. This has been an ongoing issue post surgery and I've been struggling to get bloods in order and each chemo round it knocks them back further. We & spinal surgeons have had some reservations about doing it, but its just got to the situation that it needed to be sorted. I didn't like the idea of taking on some random persons blood, but I am over that now I have had 1 unit with another due and it seems to have immediately picked up my VIM, which has been lagging. Although I have just stated chemo cycle 4 and maybe the 2 DEX steroids daily have assisted also. Chemo is such a roller coaster.
The blood thing is quite interesting. The blood is given to you unpacked and when it is seeded into your blood stream it circulates picking up oxygen, nutrients etc. One unit of blood is approximate 300 mls when in the body and loaded up with goodies converts to 1 ltr of good blood. So there is also more that goes on behind the scenes with blood donation and the cleansing, testing and unpacking the blood. Apparently NZ are the best in the world in this process, maybe an export opportunity? Start milking the people rather than milking more cows.
So to random dude in Grafton, Auckland who took the time and donated his O positive universal blood, I salute you.

50% through Chemo

Just coming out of the worst of 'icky' chemo cycle 3; the side effect drugs in hospital got pretty mixed up and it has taken awhile to load up again, get into a routine and back under control. With chemo drugs you lose short term memory and at times get very confused, so throwing in getting side effect drugs out of sync, things can go pear shaped fairly quickly. Athough I haved blogged about being positive, I find  it very difficult to feel positive about something that makes you feel so sick. Maybe I just don't believe in the old cliche "if it doesn't kill you it must be good for you". Again this cycle I am coming out of the worst of the side effects quickly and its fantastic to have a pattern building that you don't stay in the dark side for too long.

Notes to self (and others) to make future chemo cycles less disgusting
- Plan the care and drug regime prior to getting "chemo brain" and stick to the plan
- Drugs are your friends, take them especially if you are sick or confused
- Try to do normal everyday activities e.g. early shower, time with kids, exercise.. even in hospital you can modify exercise regimes and do a couple of laps of the ward
- Enjoy regular fresh, good food and interesting drinks; things that encourage your appetite and make you feel good
- Enjoy the happy, between cycles there are lots of time gaps to enjoy life, participate. Even in hospital you can have a few laughs and meet amazing people.
- In the unpleasant thick of it remember Kia Kaha (be strong, move forward), its your own tenacity, courage  and resolve that will get you through the chemo just fine.
- Countdown the milestones e.g. only 2 more days in hospital, just 2 more days on the darkside and for me only 3 cycles left.

My major milestone reached this week is that I am 50% through my last planned medical procedure for my sarcoma and all going well, I up going to return to a more normal life and existence in May. Yeehaw, where's my horse.

inner at TC and Janes

RIP Pete - 16 March 1975 to 23 February 2011

Pete's mum Reggie has been sharing Pete's story battling Sarcoma for the last 2 years. Unfortunately this week Pete lost his fight. Their blog highlights the ebbs and flows of the medical treatment and prognosis and the bedside vigil of his loving mother. Reggie thanks for sharing.

More about Pete courageous battle here: http://pete-vs-sarcoma.blogspot.com/     

Riding the Chemo Cycle

Moeraki Boulders Day Trip

I have had far more happy and active days this chemo cycle and its great getting out of the chemo haze quicker and getting into more normal life activities. I'm learning to deal with side effects better although dislike the feeling that at best your 70% and your body always feels rundown, like your dragging around a spare tire.  Fresh air, exercise (what ever you can handle), good food and just trying to do normal things all help. 

I am due back into hospital tomorrow for 4 days for some more of that happy chemo juice. I have been reading some good articles on how chemotherapy works and how effective it can be at killing cancer. I think to get the most out of chemo you need to think of the obvious positive that chemo kills cancer. It doesn't work all the time, but may work in you. The side effects are horrid and need managed;  but focus needs to be on eradicating the cancer and healing.

Ciao for now

Gary

Back in hospital - Chemo Cycle 2

I have had a good week of rest and recovery and feel ready for another cycle, I am hoping that knowing what to expect will make it easier this time around. Also they are making some changes with medications that will hopefully reduce the side effects. Just had my steroid DEX which gives you the munchies and they've started injecting and pumping in the chemo drugs. At the moment feeling really good and pain free. I have a few strategies to work through the difficult times ahead and hoping that we will get through this cycle more easily. Pic above is the kids clowning around during a hospital visit.

I decided to proactively have a #2 haircut, before it all comes out

Short term pain for long term gain

I had an expectation and hope that maybe I will be one of the lucky ones and waltz through chemo with minimal side effects, but alas no. I have found chemo to be very tough and debilitating. The process of sitting in hospital for three days literally being pumped full with toxic chemicals was bearable. The following days were horrid and I think I ticked the box on most side effects. I didn't enjoy lossing abilities and sometimes control and felt I had regressed. I found it hard to stay positive and struggled to maintain that there was a good and therapeutic part with the treatment. In my chemo affected brain I just felt poisoned and pretty low, at one point I had a visual image of a soldier poisoned in the war planning to go AWOL. In fairness the positive does turn back on and for me within 2 or 3 days things started slowly getting better, drinking and eating started to get easier, the nausea reduced and eventually headaches stopped. After about 7 to 10 days from discharge I started feeling OK and apart from being very tired was relatively and progressively started to get better and better to your near normal. Chemo affects the brain and at times causing confusion and memory loss, now a couple of weeks on I can't actually remember what it was like and in many ways this makes it easier facing the next cycle.

Chemo affects everyone differently plus there are many different regimes, some less of more intensive. My experience will not be your experience.

This week we had a very positive meeting with our sarcoma specialist and he was very pleased with all the test results and my progress to date. My body is responding well to the treatment recommended and is eradicating the cancer from my body. So when in the thick of treatment and when not enjoying a specific procedure I need to think of the incremental value and that I am winning this war.

The regime begins

Another clear lung test today - "Who ha"

This is the 3rd clear lung test in 7 months and hopefully we have a permanent pattern occurring here. Originally due to the high risk of metastases spread they are testing the lungs every 3 months and will do so for a further 18 months. This test was part of the start of the chemo regime and has confirmend that we are still in NED / Mets free status and we are all very happy about that.

I did pre-admittance at hospital for chemo today which went fine and I will be in hospital for first cycle from Wednesday to Saturday this week. The drugs that I am on include Doxorubicin (Red Devil) and ifosfamide and more details about the drugs, treatment and side effects can be found here.

Mushrooms as big as your head on Otematata

Space Invaders coming soon

I'm hiding away in Otematata, a sunny, hot and restful location and not particularly enthusiastic about starting chemo next week. Although it is likely to be unpleasant I don't especially think it's Chemo I dislike, nor that I'll be in hospital for 3 days every 3rd week, I think thats its the accumulated impact of the procedures to date and that I'm over it. My first step on this cancer journey "Kat, who do I go see get this dodgy back fixed" started nearly a year ago and it's been an incredibly long, difficult and often painful process. Kids often use the term "your invading my space", well medical procedures invade your space big time! Cutting, scanning, drugging, injecting, excising my space. I often remind myself that it's all in a good cause or no short term pain no long term pain, although it's a bit hard to remain positive and get excited in the face of an upcoming invasive procedure.

But for now it's mid summer and I'm off to the lake tomorrow with a soft-chair and a good book.

Best / Gary

Sent from iPhone