Jodies Journey - Blog 37
11 June, 2012
READ BELOW FOR AN AWESOME BOOK REVIEW OF ONE OF THE BEST BOOK'S I HAVE READ:
CALLED 'GOOD GRIEF' BY ERICA McNEAL - who has battled cancer 3 times and lost 5 children.
ALSO READ HERE FOR NEW LETTERS FROM WORLD LEADERS TO JODIE - HER MAJESTY THE QUEEN, HER ROYAL HIGHNESS DUCHESS OF CORNWALL (KATE MIDDLETON) & HER ROYAL HIGHNESS CROWN PRINCESS OF DENMARK (MARY DONALDSON) + MORE.
It has been far too long between now and my last blog. Alot has happened on my journey since December/11. Of course, life with family and challenges is always lots of fun, regardless of any daily problems we may face. I am on a city bus, whilst I type this, it's been a while since I caught public transport.
As I watch humanity get on and off the bus, I am reminded of how diverse we are are - but how similar we all feel inside. As a local community and world community - we are all as different on the outside as you can possibly stretch the imagination. We all complain so much about the world we live in, but I see so much more to be thankful for and so much more to be hopeful about.
Every one of us, at some stage of our lives are medical patients, from birth to earthly passing. My passion through the whole Jodie's Journey and advocacy/awareness representation push, has been to help other patients on their own journey's - young or old. As long as they have breath in their lungs, there is hope for tomorrow for everyone who needs life and a better way forward, whatever they are facing.
I wish to be a beacon of hope, against a tide of hopelessness, mis-information & passive ignorance.
In addition, I have been asked to be an Ambassador for another newer organisation fund, called 'Couee Community' (run by 2 passionate men) who wish to change lives and help charities. Check them out at www.coueecommunity.org
I am happy to take on some roles and everything else I do. However, the amount I do is always dependant on my body, mind and emotional state. For people like me: being careful not to push yourself, always - regardless of illness - this knowledge gives you the ultimate strength over how much you can and can't give back to society. Not letting your day time activities push you into a corner enables all of us to handle each challenge with grace and patience. Sleep is more important to me now that ever before and I need more, to balance my body and mind. Getting more than enough is better for each of our 'systems' and our emotional health. Connecting the topic of emotional health: getting out there to tell my story is not just good for my own self, but for others struggling with their own illness and/or disability.
For me, in terms of my body - I am still constantly in pain and must learn to live with this and also my mobility problems. I get fatigued and often wake with aches and pains from all over my body,and must pace myself, and rest more than a regular woman my age. But, THANK GOD for medication and my Norspan patch, which saves me from staying in bed. I can do more withrest and medication. Life is still everyday a challenge and this is why I relate to so many people. I also now have a better brace for my leg, so walking is easier.
Since my last blog, I have had a variety of new opportunities in media, to speak up about what I do and who need support in our communities, here and world-wide. You can see all of the media links that I haveon my MEDIA PAGE. Some of these have been an interview on 'The Journey' morning radio show for Vision Radio Network. The same interviews played on 'Historymakers' online and national radio. I enjoyed being in the Brisbane 96five studios with Peter Janetzki for 2 hour interview and discussion through the 'Talking Life' programme. I recently also participated in am interview with Leigh Hatcher and the Open House radio team....this interview was linked to my participation in the book 'Inspiring Stories of Hope'. It will be broadcast nation wide.
I am also now participating in a weekly radio spot - 'Health Matters' for consumers on Rhema Suncoast (from Gympie to North Brisbane) with Jeanette Acland, after 12pm, every Thursday. Plus, I was the subject of a feature article for the Sydney Sun-Herald, in March.
Not much has happened this year, in terms of my health, which is great - other than being able to successfully convince my doctors that I need 'Bacterim' in Autumn and Winter to protect my immune system and I have retained my port-a-cath. I am stoked that I was not admitted to hospital at all in 2011 and no admissions also in 2012. So, all is well health wise. The only set-back has been - I took a big fall at the end of my local beach stairs at Scarborough, the 2nd broken Lfoot in the last 2 years.
READ HERE ABOUT OUR NEW HOME - SOON TO BE BUILT BY BOLD PROPERTIES - CLICK ON THIS LINK TO READ
The photographer and I were trying to get a good shot for the Sydney Sun-Herald article and the bottom of the stairs to Scarborough Beach looked level, it was actually leaning. It was deceiving, the R leg went down and could not support me. I fell over to the R, like a stack of cards, as it happened in a split second, my poor L ankle was trying to keep me upright. I heard a crack and knew that was not good. The photographer, almost had a heart-attack and freaked out even more when I told him I would probably have to go to hospital - he said 'Your husband is gonna kill me'!! I felt sorry for him, but I tried to ease his concerns, as this had happened to me before. Regardless of the fall, we got some great shots straight after and one was chosen for the article. We just continued to press on.
Hospital X-rays showed a break to the end of the Fibula, last time (2 years ago) - it was the Tibula. I've been in a moon boot for 8 weeks and the last X-rayshowed it had not healed yet. So, it's a slow process. In response, I now have a scooter to use where a fall may be possible or likely. Not to depend on regularly, but more of a preventative aid.
Well, that is all from me for now. Regardless of what you are enduring, remember that if you have a heart that beats, blood in your veins and you woke up today - you are already more than blessed, you have the world at your feet. PHILLIPPIANS 4:8 - Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever s admirable - if anything is excellent or praiseworthy - think about such things.
- a woman who has battled cancer 3 times and lost 5 children.
Sometimes we find a book that seems to land in our lap for no other reason, but that God seems to place it there. The book 'Good Grief' by Erica McNeal is one of those books (awesome writer, talented woman). Then sometimes, we are searchng for that same book (asking ourselves why no-one on this earth understands) and trying to figure out why we feel so alone in our battles and strife. As we progress through life, always expecting the best, but never quite finding it - many of us endure these pockets of complete and utter life devastation and disappointment. It's not 'IF' difficulty will find you but 'WHEN'. We are soooo caught up in the every day of 'everyday'- when IT comes along - whatever IT turns out to be - often we are devastated.
That's when a copy of this book would come in handy, in fact - I would suggest to everyone reading this to consider not just buying a copy for yourself, but buy a few for the future, before they all sell out or if they ever go out of print.
Grief about whatever we are facing, can follow us in any direction. It's understanding how to handle your own grief and the reactions of those around you, that creates the greatest confusion in difficult times. Wouldn't it be great, to be prepared for those times of hardship and grief, before they come - by having a book just like this, ready to go. That's what Erica McNeal does here. She tells you her amazing story and explains the complex layers of grief, how your body and mind react, how people around you react and how people around then percieve you and treat you. You won't feel alone, any more after reading 'Good Grief'.
I had my computer fixed the other day and the computer geek guy who came to fix it, said - even when you have the best software and the top computer, your PC is still going to crash someday, it's 100% guarenteed. That statement stuck in my mind, because I never really thought about computers in this light. I guess I think most of us believe we are like that top computer (healthy mental state) with the best software(emotions & feelings). We think our data (career, family, home or health) are protected, even if we have everything prepared. It's not until a virus comes along that is un-predicted or un-known to our software (emotions & feelings), that we discover there's a 'hole in our floor' or 'our computer screen goes blank' - we put our leg through the hole or we loose all or maybe some of our data (career, family, home or health).
So, let me encourage you, whatever you believe or whatever your foundation is - do yourself a grand favour and buy a copy of this book - NO!! Don't buy A copy of this book, on second thoughts. Buy several copies, save yourself some postage, because I guarantee, after you read it - you'll be ordering more. Feel free to cut and paste this review, tell your friends. We have all be waiting for someone to write about this topic. The links for purchase are on Erica's page - CLICK HERE.
Jodies Journey - Blog 36.
24 December, 2011
Christmas Message - Hello to you all from the Guerrero's in Australia.
We are sending you this Christmas message as a way to update you all on what has happened for our family this year, where we are and what we hope will happen in 2012. PLUS, of course we wish you all a blessed and happy Christmas this 2011 from Greg, Jodie, Julia & Anna.
We also want to just say, we often forget peoples birthdays for us here in Australia, we rarely celebrate birthdays and it is more of a kids celebration for us, so please dont be offended if we forget your birthday, its not a personal thing. In regards to social media, Jodie will also often have to remove or reply to any comments that may sound slightly at chance to be misconstrued, due to all of Jodies many contacts. Recently, we had to reply to a comment a family member left that sounded offensive, its not a personal thing.
Thank you to all of you who have sent us emails/cards this Christmas and any gifts we have received for Greg and Jodie, plus the girls. We have a donation page for anyone who would like to give via Pay Pal towards the work that we do, the website or advertising the website.
Update of 2011 events
Make sure you all go to our You Tube channel and have a look at our latest family videos we are uploading more and more regularly particularly more on nature and Jodie has also started to Vlog.
January, 2011 - brought us some difficult news in that what we thought might be a third relapse for Jodie of Non-Hodgkins Lymphoma. It was actually, scarring in the S1 nerve roots, due to radiotherapy and past disease tumours. Scarring can often take up to 5+ years to develop post tumour and radiotherapy for all types of cancers and nerve roots or endings are particularly sensitive.
According to Jodies Neurologist Peripheral Neuropathy is a progressive condition that over 2 million Americans deal with and millions more around the world. It can be caused by a variety of conditions, but in Jodies case it was from scarring only around the S1 nerve and not active disease. The symptoms are weakness, drop-foot, muscle atrophy and severe nerve pain. After over a year of pain controlled with Endone, Jodie is now on a patch system called Norspan, which has given her a new lease on life and a complete relief from the nerve pain caused from the scarring. With the patch, she has more energy and can participate in more of life.
We know that Jodies delayed diagnosis was the original cause of the damage she now has. This is why her message is so important in what she does to raise awareness. She will from now on always wear a foot brace and use a walking cane for stability, particularly on slippery or uneven surfaces. As she has watched the R leg muscles gradually waste away, we are reminded that we are so blessed that Jodie is still here after so much and in remission, which is the main thing and something to definitely thank God for. We are blessed that our family remains strong and together in the face of adversity. Jodie and the family are hoping and praying that a
transplant and/or more treatment is very far away and it would be wonderful if treatment was never needed again, so we continue to pray. Jodie is supported by several doctors including a very talented Haematology Psychiatrist so as a family, we must all remember that Jodie and the family must avoid any stressful situations, including conflicts or comments that might bring stress to us. Its all part of the journey.
Jodies Journey website and Jodies health consumer advocacy goes from strength to strength. As her story becomes more powerful, more poignant and more relevant to thousands more people worldwide, the traffic on her site has increased and she is finding more avenues to tell her story, raise awareness and encourage others going through difficult circumstances in health and in life. Currently, she is getting approx. 2,000 hits per month on both Jodiesjourney.com and Consumerconsultation.com
This year marked a turning point for the Jodies Journey story with Jodies first published short story of her health challenges NOW available in Australia & New Zealand. The book will also be released in the USA & the UK in January, 2012. The book is a third in the 'Inspiring Stories' series published by Ark House Press. The title of the new book of inspiring stories is Inspiring Stories of Hope. You may purchase a copy from major bookstores in Australia & NZ, and also Christian bookstores, Word & Koorong or directly from Jodies Website as a signed item.
This year Jodie also appeared on the Insight program on the Australian TV channel, SBS. Also some of her story also appeared in the newspaper The Melbourne Age and in the Australian magazine Womens Health and Fitness. Jodies new book has given her a tool to engage with and give to world leaders, politicians and even royalty to tell her story and motivate change in our health systems, worldwide. As a result she has had some valuable conversations and developing connections with some of Australias top movers, shakers and federal decision makers. Some of her nice royal letters are displayed at this page.
We expect that 2012 will be a big year for the Jodies Journey story as Jodie is now also part of Australias top health consumer advocacy groups, called Consumers Health Forum of Australia. She recently attended a conference in Sydney on Consumers and Antibiotics participating in discussion and workshops on how we as consumers can change the Australian publics view of the use (or over-use) of antibiotics. Greg is very kind to let Jodie go away for the odd conference, as needed whilst he cares for the kids at home.
Jodie also spoke at a recent state conference for a well-known political party, on the subject of A Consumers Perspective of the Queensland Health System. She is now seeking more speaking, consulting and presentation opportunities for conferences, seminars, meetings and camps, about a variety of subjects, using her journey as a reflection. She has had interest from a finance company in Sydney and also a local New South Wales Council group. If you have a speaking opportunity you would like to discuss with Jodie, please have a look at her Speaking Page. Jodie has also recently been discussing some writing opportunities with a new health reporting website about to hit Australia watch this space.
Lots of Family News
Greg is healthy, doing well and enjoying his job at Queensland Baptists. He is constantly learning new skills in regards to accounting and Payroll and enjoys the atmosphere at QB. He has a new found passion for certain rock music these days and Jodie often gives him time off to unwind from home duties and to let down his short hair for a some rock concert fun. Greg also loves and takes care of his two white, fluffy Maltese male and female dogs, we rescued from the RSPCA. Bobby is the boy and Molly is the girl, they keep Greg busy and are almost like child 3 and 4.
Both Greg and Jodie love living in Australia and have been here now 11 years. We always wanted to live in Australia, but at the time of marrying no Fiancs visas were available for Greg to live here, so this is why we went to live in the SF bay area for 4 years. We also enjoyed our time there (1997-2001)
but our hearts were always firmly set on returning to Australia permanently to raise our kids in this country. People often ask us, will be ever return to live in the USA?
With Julias disabilities and Jodies situation, we are so pleased that we made the right choice, as Jodies health care is completely free here, Julias special schooling is also the best and free and Anna goes to one of the nations best Lutheran private schools, where she is learning German and doing well. Both girls are monitored and supported by counseling and educational assistance in regards to the trauma our family has endured.
Although, we understand that Gregs family miss us all Australia will always be our home and one that we would never leave. The high living standards and education, medical care here is the best and we are assisted and helped greatly in all of our challenges, far more than we would be entitled to, in the USA. We welcome anyone who would like to also live here also to check out the advantages and work conditions here, that are some of the best in the world. Wages and living standards only matched in Europe. For example, many patients in the USA with disease or medical conditions (even with insurance) often lose their homes and go bankrupt. Watch this video about a family who had this problem. Through our medical challenges, we retained our home and are about to build a new improved one with a pool, etc.
So, we will never discontinue living in Australia and always be here to reside permanently. However, in the future we would like to travel more to the US more often. Family and friends from the USA are always welcome here to stay and enjoy the sub-tropics and sunshine. We would love to put you all on a plane and mass ship you all here so you can see how much there is to enjoy, you would never want to leave. Family and friends are always welcome to stay with us; in fact we recently had our best man, Todd Lugli stay with us in Australia for a brief visit, which was great.
Julia and Anna
The kids recently had a ball as we took them for 5 nights and 6 days to Sea World on the Gold Coast, here in Australia they got to learn a lot more about our beautiful oceans and animals of the Pacific region and meet some Nickelodeon characters, like Dora, Boots & Patrick. We all had a great time staying at Sea World Resort, but were happy to get back to see our doggies and sleep in our beds.
Our girls grow and grow and grow. Julia is fast growing to Jodies height and she is only 11!! Anna is also one of the tallest girls in her class. Both have beautiful olive Hispanic/French/Italian skin they get from Greg. Thank goodness they did not get my burn easy extremely white Irish/Scottish skin. I would love a skin tone transplant from them, but unfortunately medical science has not come that far yet.
Julia is in Grade 3, going into Grade 4 (upper middle) in special school. She is way ahead with her English and is at a Grade 5, going into Grade 6 English standard. She also won a first prize in a city art competition out of approx. 400 won out of 2,000 entries. Julia was first prize out for the Black and White drawing prize. Below is Julias prize winning drawing of a Koala.
Anna has finished Grade 2 now and is entering Grade 3 next year. She has strong skills in German, Art and Music and Mummy is doing extra tutoring with her in Maths and English at home. Anna keeps telling us her dream is to become a Dolphin Trainer. This matched perfectly when we recently spent 5 nights at SeaWorld resort on the Gold Coast, Queensland for a family summer vacation. The kids loved being able to take their time around the park, learning more about our Ocean creatures in the Pacific and even meeting some Artic Penguins and Polar Bears.
Make sure you all go to our You Tube channel and have a look at our latest family videos we are uploading more and more regularly particularly more on nature and Jodie has also started to Vlog.
[One thing wed like to note some family think Annas name is Anna-Maria it has never been this, since birth it has always been Anna(first) Maria(second) Guerrero(last) just to clarify]
On the Horizon
We are enjoying going to a great Baptist church called Bridgeman Baptist, at Bridgeman Downs on the north side of Brisbane, affectionately nicknamed Bridgey we feel looked after, cared for and connected to a concerned community and love attending. We have had our house on the market for 8 months now and our vision is to sell and build a home with a smaller yard for easier maintenance, a pool for exercise, a granny flat for Jodie to avoid family infections and items such as non-slip floors, ramps & rails, etc. to avoid falls for both Jodie and Julia as Julia has Hypertonia issues. Hopefully the home will sell soon and we can start building or looking for the right home.
We think 2012 will be a busy and exciting year all around for our family and are looking forward to a year without treatment or chaos. Please remember that Greg and I are always here to chat to or talk to anyone who feels we can help with their personal health or disability situation.
We have both been through some of the worst and most challenging difficulties a family could face, yet we have grown stronger through it all and can now help others, dealing with their own problems.
However, we always point everyone back to the one that gives us the strength to go on, rather than looking at ourselves and struggling to fix our own needs. Sure, there are many, many times we will need medical help (either physical or mental), but often our emotional and spiritual answers are located in worlds best-selling book, The Bible.
"It is better to trust in the LORD than to put confidence in man." Psalm 118:8
Thanks for reading our 2011 year update, please feel free to send this onto your friends who might like to connect with us via social media or the website.
Here is a great video wed love you all to watch about a kids perspective on the Christmas story, CLICK HERE.
We pray you all have a happy & very healthy Christmas and NEW YEAR, 2012.
Greg & Jodie Guerrero
Julia & Anna Guerrero
Pine Rivers Shire,
Jodies Journey - Blog 35.
28 August, 2011
Well, after my last blog and the conclusion that I did not have a third incidence of disease life felt quite surreal & still does. In the last 5 years, Ive either had active disease, been in treatment or been recovering from treatment, non-stop. However, with my leg starting to show the same symptoms as disease incidence 02, in January 2010 - my expectations and those of my doctors were possibly disease again.
2 Hospitals later, how surprised and thankful we all were to find or conclude that I have only scarring.After a final review recently, both my neurologist and haematologist believe that I am definitely in remission. If disease really had been involved this time, I would be in a lot more trouble by now.
In the beginning of figuring out the puzzle, I really wanted to fix my R leg, no matter what. But over time and with increased understanding. I have become more thankful that I have my precious life regardless and if scarring & leg disability is all I have then I wear my war wounds and honour God for pulling me through. I have no option really, as this scarring is usually permanent & progressive. A leg is a leg is a leg. I will wear my brace & use my cane & smile every day. My R calf muscle is gradually wasting away & my R foot is dropping more, but who cares, its just a series muscles & I have plenty more, plus a life: in remission.
This winter in terms of infection has been pretty rough and I'm currently on my 7th box of anti-biotics this season. Last year I was in hospital with Pneumonia. My blood's look OK, but the last chemo drug I had called 'Fludarabine' is notorius for rendering one's immune system permanently supressed. I am hoping this is not the case for me, I am trying to be as careful as possible. The problem we have is that the family brings many virus' into the home and it turns into a bacterial infection almost immediately in me. This is one of the reasons we are building, to create a separate bedroom away from the rest of the family to protect me. We are selling to build for this and other disability reasons, anyone interested in a 4bed home on north Brisbane, let us know.
I have recently turned 40. I felt so happy to reach that number, what a great place to be, alive and in remission. Thank you everyone, for helping to pull me through the mud, during the last 5 years. I know all my friends, new & old, family and acquaintances all had a part to play.
My medical doctors and my medications have also saved my skin (I now wear a permanent pain patch & will keep my port-a-cath in). Ultimately, I owe my life to my creator, who walked beside me, when the rain was pouring down and some fantastic doctors. My parents and my sister & husband & children have all been awesome and so brave through this all. This Jodies Journey blog is by no means finished however, if there is nothing significant to medically blog about, you will hear about my media & advocacy work & receive some inspiring life blogs, instead.
Lets pray that a cure is found for every blood disease, not just mine. Blood cancers can happen to anyone,thought to be caused byviruses and poisons in the environment that all of us are expoposed to. Lets also pray that my advocacy work will continue with favour. So many opportunities have come my way in the last 4 months, its all stations go. Here are my latest awareness & media ventures:
My NEW Book with my short story is now released, order here!! Every book ordered through my website, I will personally sign. It is currently on sale in Australia & New Zealand and will be released in the USA & UK, in January, 2012. The book (published by Ark House Press) with myJourney in 'Inspiring Stories of Hope' is a chapter story of over 4,200 words - plus real stories from the following women: Diane Cordaire, Ruth Corlett, Kerrie Bindi, Dr. Jennifer Dawson, Elissa Macpherson, Jeannie Mok, Michelle Noerianto, Dr. Reina Michaelson, Dr. Lily A. Arasaratnam, Yoka van den Brink.
In May - I appeared on SBS Australia 'Insight' programme (about the Australian Carbon Tax, to support families); watch here (Part 2)!!
I was also in an article in the Melbourne Age, read here.
I appeared both Brisbane Channel 9 & 10 (Brisbane) on Tuesday, 14th June with comment about the Queensland state budget & the new home builders grant (as previously mentioned, we are trying to sell & will eventually build a safer home with lots of ramps, railings & many more features). I also appeared with a large photo in the Brisbane Courier-mail, page 9 on Wednesday 15th June with a write up about the same subject.
As I am probably the EBay queen, the Australian EBay magazine recently published a write-up on some of my EBay items!! I am currently in talks with 2 prominent womens websites (in Australia & the USA) about writing articles for women or featuring my book. I am also speaking to one of Australia's largest disability magazine about a possible write-up and a small write-up & photo about my experiences pre-diagnosis will be in the next Australian Womens Health & Fitness magazine.
I am taking time to write the rest of my story ready to publish should the opportunity arrive (as an auto-biography). I need approx. 40,000 words and are up to about 14,000 words. Lots of refining needed, but I'm working hard on it.
Whether my name or website is written about or featured, people Google & read about my story, as a result (my hope is) they become motivated/educated & inspired to understand the disease & its symptoms. They come to feel empathy for patients dealing with illness & disability and learn to value their own life & the blessings they may not appreciate. There is so much more, to learn, to see, to feel & to understand - from the journey.
I am always happy to hear from any of my friends or supporters. Also remember that the website: consumerconsultation.com is set up for you we have 4 consultants ready to talk to anyone who wants consumer advice in relation to managing health issues, with your doctor, team and/or family & friends.
I am also available for speaking engagements, go to my speaking page. Until next time....
Blessings Always, Jodie Guerrero.
NEW medical blog update & side note - Jodies Blog - Blog 34.
(26th February/2011) I will make this super quick - as I am sure some of you are interested in what was our final outcome in terms of the best opinion & with whom I believe is the best Neurologist. I have now sought the opinion of 3 city Neurologists. First one (through hospital B), second one (through hospital C) and the third one as a private patient - Neurologist number 03 was my former Neurologist I had been to from hospital A, at least 2+ years ago. She is (I believe) the best, in terms of her through examination, her consideration & her compassion & kindness. She is also now a professor of Neurology & although she could not recall my consultations with her 2+ years ago, she offered a more logical and understandable explanation as to what is occuring in my R leg & with my mobility. Also I had some weakness in my hands & arms.
Both the 1st & 2nd Neurologist's both (I feel) treated my situation poorly. The first one came to the conslusion that it was Anxiety related (with my current med's) - that is impossible. The second one also came to the same conclusion & stood up for the first one....a bit of 'boys club' - I think.
Finally, when I got to Neurologist number 3 - some sense prevailed. Her opinion, based on examination & history is most likely to be PROGRESSIVE SCARRING POST RADIOTHERAPY & POST LESION DAMAGE. She could not feel my loss of strength in my hands and arms, but did not discount that I could not feel it and we will monitor this, as time goes on.
Although last relapse, we were assured that the intial radiotherapy I had was not strong enough to leave any scarring, the fact that I had a large lesion next to the S1 & the sacrum, would probably be enough to explain my present difficulties. It can take 4years+ for scarring to develop post radiotherapy & cancer lesion/tumour.I am searching for more information or a name of this, to research & read. If this is the cause of my loss of mobility, weakness & pain - it is usually progressive, permanent and will have to be continuously managed. This is a mixed bag, of course - no disease is great - but - I would rather have full mobility. However, regardless - my situation will now be managed through my former Neurologist and I am being referred back to my former Haemotologist (back at hospital A). We will also do all new MRI's (Cranial, Spinal & Pelvis). She has assured me, if we find disease that I will get treatment ASAP.
In terms of my quality of life, my bloods have remained steady - but are still middle ground (they have never completely recovered from my last chemo) and in light of the new opinion, I will do what I can to try to protect myself infection wise and fatigue wise (regardless of a transplant or not). As long as I have good doctors, meds, prayers & the correct restful living situation - I think I will do OK - I remain hopeful that I will not loose the R leg altogether. Please hope and pray with me. I will blog again as I get substantial news on the medical front. On life front, I have started painting again and have added my first serious painting below....I am looking for more projects.
Blessings 2 U all, Jodie Guerrero.
05 February, 2011.
Hello to all my friends & supporters,
I have almost been thinking about avoidance of writing this blog....putting it off until I get myself and my medical treatment 100% sorted. Getting this out there is part of my journey and even though I am disapointed - I must write and inform.I think now I am getting a new medical path sorted, I am figuring in my mind & heart what I really want....and all of the below will explain. I have shed alot of tears about what I am about to update.
In January, we were all ready to commence with SCT and fix this R leg. We were shocked and amazed to find that my 2nd Heamotologist had changed his mind regarding the cause of my weak R leg, dropfoot & pain. Since late August, 2010 - I have sat patiently and waited with my family for more evidence to surface. Transplant had been halted, due to Neurology's opinion that we required more evidence and wait until my bloods had increased for a safer treatment regime. Haemotology had endorsed the delay and although they gave me the option to go forward with transplant, they highly recommended that we don't and wait as suggested.
Whilst we have waited, my R leg has become weaker, my R foot is dropped and I now require a brace on my R foot. Nerve pain has inreased. December/January 2010-11 - I started to notice more odd symptoms occurring with my speech, arms & hands. I presented all of these to my current Haemotologist & Neurologist - I have kept a tab of everything. As I keep a health log of key dates and key symptoms....what is occuring in my body and at hospital.
After my 3rd Neuro consult in January 2011, Heamotology told us that although (again) I was free to proceed with transplant - HOWEVER Neurology opinion had now well and truly changed the opinion of Haemotology. We were told that even if we were to proceed with SCT - these doctors doubted that transplant would return my leg to normal. Why? We were asking this also - this is why I changed hospitals in the first place, to proceed with transplant (to save my leg). I would not have gone to all the effort to do so - if my referring medical team had not endorsed this decision and the recieving team weren't happy to have me. Everyone was clear on the mission - we were all on the same page....now - not so.
The basic opinion now was that Lymphoma was not causing my leg/foot & pain problems - 'possibly an unknown Neurological health condition or (wait for it) Anxiety'. We were agasp - not only had we waited patiently for the right time and obeyed all our instructions. Now, we were all completely off the page and onto a unbelievable & incorrect book. During this past waiting time, I had been doing my own research into nerve roots and Lymphomas....I had come across a specific disease that sounded very similar to my own situation and papers & research about this, was ignored.
You can say (at the very least), that I am completely not happy with this - not in agreement at all, with this opinion & very unhappy with a number of issues (I have professionally & diplomatically actioned my concerns in the form of correspondance). Nothing, apart from what was intially explained to us was given to us - however, upon speaking to a Phycologist - she explained a condition called 'Conversion Disorder'. Upon reading this, I was disgusted that this is now the opinion and disagreed even more.
What happens now: I have already visited another Brisbane hospital and after an ER full neurological exam, was told they would send they're Neurologist an urgent referral. I will be following up with his office soon. I am working also with my GP to monitor my symptoms and gather a 2nd, 3rd or 4th opinion, including trying to obtain a 3.5 Tesla (higher resonance) MRI to scan nerve roots and see what cannot be seen on regular MRI equipment (there is only one in my state of Queensland). Even if I have to seek assistance in another state of Australia or MAYO, I will do so. My situation is currently urgent, but I refuse to return to the same opinion and will not allow misdiagnosis to re-visit me. Certainly, having a less dangerous diagnosis would be better....but, I have been here before and until we have firm answers....I will continue to search and blog when I have more answers. I should have my own episode of 'Mystery Diagnosis' dedicated to my story. It's been 1 year now of searching once again. We must treasure every day and thank God when a day without pain or illness visits us.
I am now writing more and have a NEW & entirely different additional blog (from a non-medical aspect) located here: Jodies Life Blog.
Love to you all, Jodie G.
07 December, 2010
Im going to make this as short as possible. I am aware that some of the details and the frequency of blogs can be a bit much for some people. Please feel free to delete blog emails (or let me know if you need to come off the mailing list) if youre no longer interested in my journey. I dont want anyone to feel pity or sorrow just send me your strength and love and care. On the other side of this transplant is success and an even more amazing journey.
Since my last blog I have seen my resident consultant Neurologist, consultant Urologist, had a Physio assessment and then the next MRI. Finally I had my progression MRI on 12th November we were looking for change in the current small tumour on the S1 nerve. No change was detected, however, this is quite common. At the same time, my R foot is starting to drop and the leg is far worse. My perception is that my leg & foot has greatly weakened in the last 2 months. My last neuro strength test was 4/5, 2 weeks later it was a high 2s/5 by Physio. Strength tests can be annoyingly objective, depending on the tester.
Upon speaking to my Heamotologist Professor, 03rd December and considering the progression of symptoms, he has encouraged me to consider starting the transplant process after Christmas, regardless of what other physicians may think. He has promised me he wont allow any other medical staff to question our decisions, about treatment. This has happened to me before and the politics involved in these processes intra & inter-hospital can be greatly difficult for the patient, both emotionally & mentally.
I will see my professor again on January 14/2011 and we will then book in the beginning of treatment and go from there. We are now concerned that the leg could completely go and be unrecoverable, so we must move regardless of the last MRI. Physio has recommended a foot brace, which we have now ordered to retain the muscle integrity of the foot and prevent drop-foot damage. Should I have any massive leg/foot failure in the next 6 weeks, I will urgently go straight in.
It has been almost 1 year (since February/10) that this progression of leg problems had started, as the 2nd relapse. I am being careful where I go, in terms of pain & fatigue just places where I can go with minimal walking. Driving is fine and morphine is great, just not the two together - that could get me in all sorts of trouble. After transplant, physio has indicated that I will need rehabilitation of the R leg to get my mobility back to the best we can, with hopefully no permanent damage. Transplant will be obviously dangerous, affect my immune system, etc but could give me a lengthy remission and were always hoping for no disease at all. I am interested in video blogging my journey through transplant to help other patients OR documenting the transplant on film for a possible doco later on. Anyone interested in assisting me with filming, let me know.
I love this video: Life. Live it Well....inspirational quotes
Along the way, I enjoy hearing the interviews of other people experiencing similar challenges,
Cabin-wise: (Gypsy Cabins, Albany Creek Apex, North Lakes Rotary) are all doing some fund raising, grant writing & consideration, raising awareness and helping me think about options to assist in getting this mini-house going. But, until we have secured it, we are very happy to receive any donations to develop this need into a reality. This really is a medical need and so we are looking for caring sponsors.
I feel that after the last 5 years of dealing with all this, this Stem Cell Transplant will be a turning point health-wise and all around for my life/my family life. After transplant, I will live away from the family for my own health, physically, mentally & emotionally, to prevent infection & burn-out, I have to put my health number one (my loved ones understand this). I am also aware of the strain that being the major Mr. Mom of 2 little girls (one being a special needs child) puts upon a man. We are talking about his health and the girls health also. Seriously, we so need a rent-a-mum/mom service find a God-Mother employ a step-mum/mom.
Whatever it takes to keep me healthy and the family healthy health is number one and we will do what we can and consider the all the options. As I step through this next phase, I am relieved but (of course) thinking deeply about all that is to come....I need lots of loyal friends to get me through this next stage keep me going hands to hold stupid jokes to laugh at chats and memories visitors (scrubbed up & masked)!! its all good and I will be cared for well in hospital, by some of the best nurses and Heamotology doctors on this side of the world.
I am looking forward to getting some more wigs and trying new styles, happy to get any suggestions....send me all your wig pictures. Hoping my hair will grow back eventually, who knows and really who cares - loosing it for the 3rd time, gives me the positive of being able to change my style daily. Thank you all for your constant love, friendship and prayers I am always here help to continue consulting and advising anyone who needs assistance in terms of consumer advocacy & health questions.
My Christmas will be very quiet, may not actually do much at all I pray yours will be blessed and the best ever. I would love to hear from lots of my friends over this Christmas Love, Kisses & Christmas blessings, Jodie G.
10 October, 2010
Hello to you all,
Since my last blog and the postponement of my Stem Cell Transplant - I have been closely monitored by the team @ my new hospital. To reduce the pain involved with the S1 nerve - I am on 1-2 morphine (Endone) a day and Temazepam to sleep through the pain at night. I am currently using a mobility aid to ensure I don't have any more falls. The R leg is still weak and I feel maybe getting weaker....but, all I can do is wait until my full team is in line, in terms of going ahead with transplant. I am considering getting an ankle brace for my R foot, which seems to be dropping a bit more - the brace may prevent any long-term muscle damage. My last blood collect & consult with Professor Gill, revealed that my bloods are continuing to slowly climb, which is great. This puts me in a place where having a SCTwon't be as risky or as dangerous when needed....my professor was very pleased about that. My last dosage of systemic chemo was in April, 2009. So, 18 months later - my system/bone marrow seems to be finally recovering.
In the last 2 consultations with my 2nd Heamotologist, we discussed in more detail - the possibility of my traveling to Mayo Clinic, MN for a S1 nerve biopsy. Only a few very skilled and confident neurosurgeons will attempt a biopsy of the S1. After researching and making some calls to Mayo Clinic in MN, I determined that it would cost me alone approx. $30,000AUD + for both the procedure, airfares and associated - so scrap that idea and after a call-out on Facebook for Neurosurgeon recommendations. My friend (Anne Whiddon) suggested a skilled young Neurosurgeon from Royal North Shore Hospital in Sydney. I have spoken to him briefly over the phone and he has asked for disk copies of my most recent MRI scans....I have now posted these to him and will await his opinion as to whether he would be willing to biopsy. Of course, with all disease having a sample will always assist doctors in treating it appropriately. His comments to me was that he must locate the part of the nerve that works and the part that is permanently damaged....he needs to take the part that is permanently damaged, instead of the functional areas. We will see what he says.
Soon, I will be also meeting with a Neurologist and Urologist @ my new hospital and I am attempting to schedule physio as well. The next MRI will be mid-November also should change of the nerve appear on the scan, we will go ahead with transplant as evidence of disease and the immediate need of an SCT.
On the awareness front, as I can I take the opportunity to speak to various organisations, politicians, media persons, prominent policy makers and patients about the issues that I feel passionate about and the importance of consumer advocacy for ourselves and for other community members. The website continues to attract 3,000-4,000 hits a month and I have added another consumer consultant to the sister site: www.consumerconsultation.com
I have now also added 2 subpages, on jodiesjourney.com as below:
I am hoping that the Jodies Case page will reveal to anyone who needs to, the process of reporting medical personnel who do not follow appropriate standards and cause delayed diagnosis for consumers. It took a long time, but cost me only time, in most states it is a free service....and I think the outcome was worth it. Not only does this process create a safer medical system, but also creates better medical professionals.
At the moment, we are looking for companies, clubs (including rotary & lions clubs), churches, organisations & sponsorships to make the cabin happen.
Thank you all for your continued prayers, love & support. We keep marching forward this is a very hard time for all involved and I thinking you for sticking with me on this journey.
23 August, 2010
Hello to all my favourite peoples,
She is determined, motivated, strong, tenacious,
unwavering, steadfast & courageous.
Additional development to the below blog:
TRANSPLANT POSTPONED @ THE 11TH HOUR
(26th August) I went to hospital (24th August) & waited for the conditioning chemotherapy, & waited & waited. Then admitted to the ward....& waited some more. I spoke to & consulted with the chief Neurology consultant & then met with my Haematology consultant. The result of the neurology consult & further meetings between several Haematologistss, was basically that the Neurology department feels there is not enough evidence to proceed, at this stage.
We were given a choice of going ahead with transplant or wait for more evidence to appear on subsequent MRI's (regular MRI's to wait for a visual change in S1 nerve). I expressed my distress at the whole event and what I felt had been a useless exercise, but have chosen to wait for change on the MRI and for all practioners at my new hospital to be in agreement, that I require a transplant. My Neuro/Haem consultant's believe I have the disease in the area & that I will need a transplant @ the right time,However they also have concerns about whether my body can tolerate the levels of toxicities needed for the transplant. The risk of death is higher for me, because I am/my bone marrow is currently still recovering from the last 3 rounds of systemic chemotherapy, which began in January/09.
So, we could have chosen against waiting, but I would rather have every doctor in line with a common opinion & all be positive that what we are doing is right. I don't want to have this transplant, if it is only my choice to go forward and I am not backed up by a full hospital team.
In the meantime, I must manage pain and an ever weakening R leg, until we find a solution....and hope, hope, hope & pray that my leg is not permanently damaged, as we wait.
Will blog again when we have major news.
This will be my last full blog before I commence high dose chemotherapy on the cusp of an Autologous Stem Cell Transplant at my 2nd hospital, Brisbane (Australia).
I start E-SHAP conditioning chemotherapy on Wednesday, 24th August. In Australia each year (out of a population of 21 Million, approx. 1100 stem cell transplants are performed).
WE ARE ACTIVELY FUNDRAISING FOR A CABIN FOR ME/TO BE PLACED ON OUR PROPERTY THIS IS FOR INFECTION AND FATIGUE MANAGEMENT (a notice about this is listed below).
A recap: The conditioning chemotherapy and treatment will be undertaken by my 2nd Heamotologist and his team. I am now in his care (as many of my readers know) because I am now experiencing a 2nd relapse of Follicular Non-Hodgkins Lymphoma (symptoms: weakened R leg, pain & bladder issues/due to S1 nerve involvement).
I was referred to this 2nd Heamotologist by the RBWH, whom had cared for me for 4 years.
If I get a good day or small spot of feeling well, during treatment, I will keep you all updated, mainly through Facebook/Twitter this is determined by how I feel physically from the disease and the chemo. I may be off Facebook/Twitter for weeks or months @ a time. If anyone wishes to contact me directly I am happy to receive text messages (from USA) 011-61-437441367 (from Australia) 0437441367 I wont be answering calls, just texts (if I am able). Before you text please read my page on What to say to a Haemotology/Oncology patient. Also be aware, that I am happy to receive prayer, but not interested in travelling to receive this from particular persons.
The general plan (as long as all goes well) is:
I am well aware also that due to the 63 previous treatments, I am already immuno-suppressed and this will greatly impact on my ability to take the treatment and the transplant. If symptoms return after the SCT (stem cell transplant), the next progression is usually Allogenic SCT (donor stem cells) or subsequent autologous SCTs (my stem cells). We are aware also that any SCT is risky and that without this procedure my life would be threatened.
Greg is happy to receive help with house duties, caring for the kids, meals and anything his wife would normally do. He will accept any help offered....as he can. His cell phone (from USA) 011-61-413235181 (from Australia) 0413235181.
If we have an emergency and need urgent support, we will post this on our Facebook/Twitter accounts. We are believing for the best, remaining positive and trusting my doctors and my God for the ultimate, remission and one day, cure. Thank you all for your continued support and love.
Love & Blessings, Jodie G.
17 August, 2010
02 August, 2010
Hello to you all,
So much has happened since my last blog and many people have been asking what is happening with me. I have deliberately decided to not overwhelm everyone with too many details, as I am sure it can be confusing and difficult to read, at times for some people. My birthday is on August 06 so glad to reach 39 and still be smilin. So, heres another blog for now to tell you all where I am at.
My last blog left my readers at the last fall (number 3) a week after recognizing that we had an injury, we knew we had to try and inject more chemo into the spinal fluid to try and holt the R leg weakness again. 7 days post this particular LP and there was still no change to the leg it was still weak and getting weaker. We used a chemo drug that we had used for LPs on relapse 2 it is called Methatrexate. The first dosage LP we performed this time, was with a drug called Cytarabine and we had 2 weeks of response to this drug (i.e: weakness & pain disappeared).the reason we changed on the second LP was due to the haziness/confusion the Cytarabine drug caused me post treatment. A bit like I was drunk and high for 6 days straight.might sound appealing to some, but believe me it aint. Writing a tiny email in that haziness took me about 30 minutes!! This Cytarabine drug was recommended to us via Professor Gill and is used because it crosses the brain/spinal membrane into the sciatic nerve, hence the reason I felt like I was drunk for 6 days.
In the foot department, the results of the CT on my L foot, showed 2 bone breaks, 2 bone fragments (Calstumdum & Talum bones) and the ripped tendon.although no surgery was needed.a moonboot was suggested, particularly due to the R leg still being weak, I will wore a moonboot for an additional 4 weeks. The moonboot is now off.
After we realized that my leg/S1 nerve was not responding to the second Lumbar Puncture Chemo inject, we made a decision to proceed with a transfer over the the second medical facility for on-going treatment (PA Hospital).this was mid June. Since that time, I have had an extended CSF diagnostic test of the spinal fluid (another 6 days of migraines) which turned up nothing unusual and 2 more plasma infusions. I also consulted again with the Professor at my new hospital and will see him again in another week. We are planning the following additional consultations, prior to commencing systemic chemotherapy:
I have also been researching as much as I can about the nerves and Lymphoma.upon Goggling Nerve Roots Lymphoma and researching more, I came across a word to describe a secondary cancer called Neurolymphomatosis then googling this term also brought up a medical document that described the symptoms of this condition and a case study of another patient. As I read through this article, I was amazed at the similarities to me and my symptoms. It was quite obvious that this was most certainly what I was dealing with. I urgently emailed my professor with the document and his response through his staff was that he was aware of the data. A nerve biopsy will be the only way to confirm a diagnosis of Neurolymphomatosis. Finding this information could be seen as very sad (it would be then that I have 2 forms of cancer/Lymphoma) however, I see it differently the more we know the better we can understand and treat appropriately.
As I continue treatment & active consultation, other Jodies Journey events are always happening, as I continue to use my story to raise awareness. My story was again published in thelatest winter edition of Christian Women with a small update.plus a lovely letter regarding the impact of my story was sent to Challenge News, who published my story recently. The letter was from a port missionary/chaplain fromEuropean Christian Mission and is posted below, it is a treasure.
The great positive out of all this is using my experience to help others, which I love doing and so many people contact me to ask for advice.surrounding this I have been developing a new website venture , which I am hoping I can launch as a small business in the future. I have now published the site www.consumerconsultation.com is specifically for consumers to meet consumers to consult about their medical experiences and also their hospital/health rights. I am looking for more consumer consultants so if you think you would like to be involved, please sign-up.
Well that is all for now, as I approach this next challenge and pray that my leg responds to ultimately the PA Hospital treatment I encourage you all to keep preserving in whatever you face. Many people come to me with their own difficult stories, prayer requests and experiences. I try to use my circumstances to change their outlook on life and so, want to inspire you all to continue even when the sun does not seem like its gonna rise.
Blessings, Jodie G.
09 June, 2010
Hello all again,
Through all things, I remember that I am blessed, regardless of my challenge or what we face as a family.we get on with it.smile, accept it & use it to make a difference. That is my dream anyway. I pray that all I endure will make a difference for someone else. This is bizarre - I had a fall (3rd fall from the R leg) 04th June out the back of the Royal Children's Hospital, whilst exiting a QLD health building (visiting a friend) my R (weak) leg crumbled underneath me - my R knee bone hit the concrete & I twisted the L ankle. I even had a massive wound to knee through my clothes. The poor bloke & his 2 kids, who picked me up off the concrete, said he heard the bone smash from about 6 metres away. Apparently I have ripped the 'extensor digitorium longus' tendon from my L leg bone, fractured part of the Talus L foot bone & a small piece of bone has ripped away with the tendon.
I went home after that, thinking I could just ice my injuries, but returned for X-rays on Sunday....I only found out Tuesday that I have been hobbling around on a fractured foot. I was at the hospital (to meet the same friend & see my therapist) - the resident Dr. just happened to call me & said I needed to immediately go to the ER & get a plaster on my L foot, as I had a ripped tendon & a fracture. I was so surprised when he called, as I thought no phone call Sunday & Monday - I must be fine. I presented to the ER and got my temporary plaster....I now understand why my foot was so sore in a particular spot. My R knee looks nastier than the L foot, so both I and the doctor were surprised, as originally we were not going to X-ray the L foot.
Immediately, before I had the fall, I had presented at the Heam. Registrar and through testing confirmed that my leg (only 20 days since the last spinal chemo) was weak again. I had not noticed that my leg had weakened again, only when he tested it. After this examination, I was trying to be careful, as I walked to see my friend. But, after coming down 4 flights of stairs, I assume this weakened my R leg more and as I came out of the building, it just crumbled. My friend who works for QLD health (in the building where I fell), has been telling me of the plight of these workers in this building that has no lift!! Workers are forced to climb 4 flights of stairs to get to their offices. They have been asking for a lift for a long time. The team in this building will now report my injury to QLD health in support of a lift for disabled workers and visitors. I find it odd that my injury may in fact help the workers in that building. A report has been lodged with workplace health & safety.
How can anything about this possibly be good? Well, this highlights a safety issue of me walking around with a weakened leg really is a sign to my home hospital medical team that my safety is being compromised and supports the need for transplant. Regardless, I try to smile and deal with everything in a positive light, as best I can. As long as I am being looked after medically and the rest of my family is healthy I am happy. I do all I can to support Greg and he supports me a very patient husband and very loyal. Even with injuries and Lymphoma and other challenges God is still good to us and helps us every step of the way.
This coming Friday, I am due for another Chemo lumbar puncture to rid this weakness again and continue with lumbar puncture treatment as we wait for more medical opinion from various doctors! Watch this space. Thank you for your continued prayers and love.
01 June, 2010.
Hello concerned citizens (family & friends),
It is a little perplexing to a patient, that the medical scientists one is consulting with are of the same organisation, but use totally different angles with different opinions? In regards to the 2 hospitals I am now talking to - I think there are some political aspects in-between hospitals and adopted methods for treatment, in regards to particular Heamtological practices and transplant protocols.
We have now consulted with both the professor expert and have a brief opinion of my home hospital panel of Heamotologists, along with my chief consultant from my home hospital. There seems to be differing opinion between the professor's opinion and my home hospital panel of doctors. Although, we are still gathering, at least 2 further opinions from a BMT (Bone Marrow Transplant) consultant and also the professor's collegue's.
Upon the professor's recommendation, 2 weeks ago, we went ahead with a Lumbar Puncture chemotherapy small dosage of a drug called Cytarabine, which crosses the brain/spinal membraine - within 48 hours of that - pain in the S1 and leg weakness had disappeared. It was confirmed....in my eyes and my consultant. Past this, the professor has recommended several further LP's with a mixture of 2 chemo drugs, followed by the same drugs as a systemic/blood stream administration and finally preparation for an Autologous Stem Cell Transplant, then radiation to the area. He expressed to us, that if we don't do that, it will return. My chief consultant agrees.
However, it is now a game of wait and see, discuss and discuss some more, my condition, my leg and the risk of proceeding with a transplant in my current state vs. the risk of more relapse....further nerve damage AND which hospital should I progress with, in terms of my treatment. This is a very strange presentation for all of the doctors involved with only the professor having seen this before, in this type of condition. It is going to be one of those grey-area decisions that may ultimately be up to me and my family, in the end. It will take us time to sort it all out, between the doctors opinions, family opinions and my own body and what it is telling me.
This tiny piece of Lymphoma, causes maximum impact on my mobility & quality of life....which just makes no sense....however - doctors need to see scans and results and have tissue. A biopsy on the nerve may be the only option to prove that we have definate disease and beat this thing, once and (in my opinion) for all.
I am not sure what I think about it all at this stage - time will tell how we all feel....I want to be healthy, I want to be a normal woman and a undistracted mother without having chemo, medication, side-effects and all that to deal with. Although, I know that there is a reason for everything and I have used all this for good, illness is certainly a grind. This whole battle has made me a strong woman, who knows exactly what she wants and where she wants to go, regardless of what others say. Having gone through what I have been through, I can honestly say now - that the regular day to day bug's that we encounter - the trials - the problems - ARE NOTHING compared to this. AND ditto to raising a child with special needs....is there anything else that can possibly be flung at me? I doubt it. I am not afraid, I don't doubt what I believe - but I have my moments and my days, just like anyone does....however, I am grateful to be here, to be given a second chance. Transplant science is incredible.
Our family was Blessed this past weekend by a church team from our awesome church (Bridgeman Baptist, QLD) under the 'Yes we care' community program - our place was blitzed with large team of volunteers who took care of a lot of odd jobs for us - so wonderful and we love them all for really blessing us!! Thanks team, so much!! We love hearing from you all (thank you for all your prayers) and will do another blog when a final decision is made or we move into deeper treatment.
I was touched by this video this week Called '99 Balloons' (CLICK HERE) from a couple, who also took a bad situation and made it into a blessing.
12 May, 2010.
Hello family & friends,
I felt I must do a blog again, as so much as happened yet again and swift treatment is the name of this game. I am certain this is a relapse of Lymphoma, as we have now found an expert to confirm this. I discharged myself from hospital, May 09/2010 (so I was in for 10 days). That was enough for me. Good News (that I am totally elated about) - we now have a clear plan. My CT & BMA were clear, however we still search for the source.
Upon my insistence - my consultant has made contact with one of Australias top Lymphoma experts. Upon seeing me, in hospital, my RBWH consultant (Dr. G (A) she is fabulous) told me about the annual ALLG conference in Adelaide. The ALLG is the chief conference every year in the Australasian region that hosts discussions between professors, consultants, and experts in Leukeamia & Lymphoma treatments, clinical trials and new methods of treating these diseases, in our region of the world.
My consultant and many others go each year. I knew that it would be probable that she may see PAH professor G (B), at the conference. Without a referral from my current Heam consultant, I cannot see professor G (B). I had first seen his work with Lymphoma on an edition of the ABC TV program, Australian Story. The episode was called From My Fathers Fridge. CLICK HERE to read the transcript of that program.
My wish to see professor G (B) stems from first seeing his story on Australian Story and his understanding and research into odd and asymptomatic/complex presentations of these blood diseases that may persist and cause problems for the patient. I knew that because the disease was tricky, I may need to talk with him someday. I just knew somehow and felt led to remember his name. CLICK HERE to read about the work of his Lymphoma team at the PAH.
Upon leaving my hospital room, requested my consultant to please speak to professor G (B) at the conference and ask for his advice. This did happen and she told me that yes, he had seen my symptoms before when biopsied as a low grade Lymphoma, but only in 4 patients in his whole career (about 22 years). Normally a low-grade/slow-growing Lymphoma does not attack nerve roots, only aggressive Lymphomas.
So, I have an urgent referral to see Professor G (B) at the PAH, May 14/2010. We will discuss a way forward from there. A lot could happen from this point and my situation is changing daily with a familiar symptom reappearing 2 days ago. The addition of that familiar, now new symptom confirmed to me that it was back, for sure. May 11/2010, I had a Lumbar Puncture to withdraw fluid for testing.on May 17/2010; we plan to do another Lumbar Puncture and inject a dose of Cytarabine, to try and return my leg to normal and relieve pain in the back. Thank God for sedation. This injection of chemo will only have a temporary effect and so a more lasting solution is required. Today also, I had a PET scan at the RBWH in search for cancer cells, located around the body. PET technology/nuclear medicine and the use of radioactive isotope for detection of cancer cells is quite amazing and saves many lives, every year.
I feel strong, calm and not worried at all. It all seems so standard to me now. I just trust in God and walk on. I think thats just what I have always done. It's part of my personality to not give up and keep going and persist in all things & circumstances. Do I really have a choice for not walking on? I am too young with too much to continue working towards and I love being with my family & friends. Its not my time and I will never willingly give up. Bless you all, I love hearing from you all.please send me your prayer requests also.
My story and journey was also recently featured on the front page of the 'Challenge News' Newspaper (Circulation is 50,000 Australia-wide. CN is also going to try to submit the story for the South-African edition, Circulation there is 300,000). Click on the links below.
Blessings 2 U - Jodster.
02 May, 2010.
Hello to my support team, family & friends,
Much has happened in the last 2 weeks, since my last blog and in order keep everyone informed, writing another blog is necessary. Most of the time I keep alot of people informed via Facebook and Twitter. However, I am aware that not everyone can use FB & T for social networking purposes. So, during this phase of the journey, I will blog a little more to keep everyone informed of the finer details of life at the moment.
In my last blog, I mentioned that I had taken a couple of falls and although for both of them, there was moisture on the ground, it was unusual for me to slide without being able to stop (particularly) my R leg. From that point on, I took extra care around the house and started using a stick for extra stability, especially outside on un-even ground.Unfortunately, though over the ensuing weeks, pain in the sacrum/S1 and weakness started to increase and it became apparent to me, when I had trouble lifting the leg in/out of my car, that something was not right. Another challenge now to face. So, over the last week, I have been visiting and consulting with my Hematology consultant and registrar, in person and via phone about my symptoms and particularly the pain. My Hematologist consultant issued me some Morphine (Endone) last week to stay on top of it.
Within 48 hours of that call, we had arrived at a scheduled urgent MRI and my leg had become even weaker. The MRI went for 1 hour and was an extensive image of my entire Spine. The next day, the news was that my spine was clear and the small lesion left from the original disease was even clearer. So, this is good and not so good....we have to try and locate what is causing this problem and try and save my leg from permanent damage or at least get it better and formulate a plan on how to tackle this long term.
I was admitted as an in-patient 30 April/2010.....I can't count how many stays I have had in this hospital, but it would add up to at least 5 months or so in the last 3 years. What is the next step? Well - we are monitoring for increased signs of weakness and are waiting for the Neurology team to see me and evaluate what we can do in terms of testing from a Neurology standpoint and have my case presented back to a panel of senior Hematologists to try and figure out what to do this time.
The reality is, that if this is Lymphoma, it could be the size of a pea or smaller, possibly even microscopic - my Hematologist has said, it could be just a few cells blocking signals through the nerve to the leg....as scary as all this sounds to the lay person, I don't feel scared at all, don't feel upset or sad at all, I am just slightly annoyed at this thing trying to come back into my life and take my leg again. I know that Greg and the girls hate me being in here and I also, however, we are all very well practiced at this now and play it all by ear for complications with my health. Greg keeps things at home normal for the girls and they talk to me every day on the phone and webcam.
What's next and how long will I be in here? We really don't know - could be 1 week to 3 months or more, depends on the treatment and what is found. If it is Lymphoma, the natural progression would be Stem Cell Transplant, however - all of our options will be considered. In other news - Recently, when shopping I realized I couldn't see a menu on a board and thought it might be time to see an Optometrist....now with glasses, everything is soooo clear.
Other news, Julia (we've found) has a real interest in and a incredible memory for world countries & cities....her talent in this area is quite amazing and we are working on ways to foster her knowledge in this area. Anna is really progressing well in her writing and we are working hard with her teacher to identify ways to make her more excited about her writing at school, year 1 is a little harder than when I was in year 1. Greg is a great dad and looks after me, the girls and our two doggies...enjoying his baseball season at the moment. The girls now have some Nintendo DS's and Daddy has been caught snatching them from time to time for his own enjoyment.
Many people offer us assistance when I am in hospital/ill and we are always very happy to receive, some suggestions are located on our GIFTS & DONATIONS page.
Thank all for your continued prayer and love.
I bring my mobile PC/Webcam and Phone to hospital - so my mini office comes with me for JJ. I am happy to chat with anyone over the web, when I am not doing testing, meeting with doctors or family.
Blessings and love to you all.
12 April, 2010.
Easter 2010 has now come and gone (Im hoping you all had a lovely time remembering the true meaning of the season) the family is all fine here & doing well & school will soon be back in session after a busy Easter season. For me this Easter, spending time thinking more about God's ultimate sacrifice, was this year more important to me. Finding frequent time alone and taking more time out for prayer is becoming a greater focus for me, day by day.
It is now time for a new blog, as a lot has happened since my last entry & I must update you all. When I say a lot, I mean regarding the website & getting the journey out there. The interest in my journey this year has really sky-rocketed & accelerated. Most of the activities & interest listed below have been, as a result of people approaching me. A lot of varied people are hearing about my story & journey & telling their friends, linking to my site. This is great; just what I was hoping would happen more this year. I had a feeling that 2010 would be a big year for JJ. It has been almost three years that www.jodiesjourney.com has been up & out on the web. I wish I could get out & promote a bit more, but my fatigue & body halt me often reminding me that everything can be done from my JJ office.
Health wise, I am glad to report that my blood counts are slowly rising.this is way behind the norm. My Hematologist believes that it has a lot to do with the depletion of my bloods prior to the last chemo regime, now 1 year ago. She has also attributed it to the 10 doses of radiotherapy I had on my R Sacrum, when I was first admitted.this lowers my blood counts overall & all the treatment in total has weakened my bone marrow over time. My marrow did not stand-up well to the last 3 doses of chemotherapy/Fludarabine. The last BMA (Bone marrow Aspirate) revealed Hypo cellular Marrow, common in cases like mine.
We are pleased to see that my bloods are finally recovering, however slowly.we will however continue the Plasma infusions during this autumn & winter to ensure I stay healthy and bug free & continue to evaluate. I have found out since that my 4 bottles of Octagam/Plasma every month are the result of 14,000 plasma donations from healthy blood donors. Just a staggering figure and I praise God also for my Port-A-Cath, which eliminates painful searches for veins in my arms. After alot of fishing around around for them, over the years - they have started to disappear in my arms, I guess similar to addicts who have to look for veins in other parts of the body.
The whole family has now had their H1N1 shots & I continue to wear a mask as a precaution, as recommended by my Hematologist. I have also mentioned to my Heam consultant that I have had 2 significant falls in the last month, due to my weaker R leg, we are watching this leg for further signs of weakness & I am taking a cane with me, when I feel it is needed. Every time, I see my Hematologist, we test both of my legs for strength to make sure, we are on track. I am still totally enjoying being part of the consulting team of the Family Advisory Council for the new Queensland Childrens Hospital and learning a lot about the work involved in setting up a better childrens hospital for our state.
Some of the great steps forward that have occurred since my last blog are:
So, as you can see interest in JJ is very intense this year I am very pleased about this.my hours of sitting at my PC developing the site, has really now started to pay off, in terms of awareness and interest.
I am also happy to offer assistance and consultation to consumers/patients worldwide on the following issues: Dealing with GPs, Negotiating with hospital staff to get better outcomes, Consumer rights, Consumer complaint procedures, Blood cancer from a consumer prospective, Accessing emergency services for respite and many other consumer health topics. I am also available for online, telephonic or in-person speaking engagements and/or media opportunities, as my body permits.
I love hearing from you all and will continue with another blog, as more interest about my journey continues to be generated. Bless you all and thank you constantly for your consistent support & healing prayers.
01 February, 2010.
Hello Family, Friends and Supporters,
BEFORE I start, a reminder to please support the annual Leukaemia Foundation event: www.worldsgreatestshave.com
I pray you all had a joyous Christmas and a wonderful New Year is shaping up to be your best ever.
Time for another blog and update....now that the kids are back at school and life is a bit quieter at home for me.
A lot has happened since the last blog....I will try to keep this one short & sweet (NOT). Since my last blog, my Hematologist expressed some concern about my waning blood counts and (it seems) their in-ability to recover sufficiently since my last dose of Fludarabine (Systemic Chemotherapy) in May/09. Also, my bodys difficulty in fighting off simple infections that most people can get rid of in a week or two (in me, getting rid of a cold can take about 2 months). Although no-one should try to compare one Lymphoma/cancer patient to another my Hematologist was telling me about another one of her Lymphoma patients who now, after 8 doses of the same type of chemo is riding bike races regularly from Brisbane to the Gold Coast. I only had 3 doses and I barely have any energy to make it through the day. So, to check if my bone marrow was not infiltrated with either Lymphoma or Pre-Leukaemia -a secondary condition after chemotherapy called: Myelodysplasia - MDS.
We ordered another BMA under sedation (Bone Marrow Aspirate)-(I have had way too many of these, probably at least 12 or more), which proved to be inconclusive (couldnt get enough marrow).I then asked if we could do another either double or triple BMA, under extra sedation or fish around in the bone until the doctor was able to get enough Bone Marrow & Bone sample out of my Hip. My Heamotologist gave me afunny'areyou sure'? like look -- 'you know it's very painful' --I wanted to get it done. The first BMA was in December and the second attempt was in early January. I was very nervous on results day, not sure what they had found. I got the results on January 15/10.No Lymphoma or Leukaemia cells were found in the sample and my bloods were up on that day. However, what can be seen & may explain my poor Bone Marrow recovery is a condition called: Hypo Cellular Marrow which is basically poor production of certain White Blood Cells (WBC) by the marrow. It is a form of Bone Marrow dysfunction/suppression or failure, post chemo and can be a pre-cursor to MDS. So, the plan is to watch and wait and continue the Octogam (Plasma) dosages once per month and make sure I dont get sick.
I have currently had 9 dosages of Plasma and will have my 10th dosage in February/10. My only concern coming into a new year (and soon Autumn in the southern hemisphere) is that Swine Flu and all other infections will soon plague the QLD community and I must take precautions. Last year, prior to Swine Flu vaccinations, I wore a mask everywhere I went and I may soon do the same again, until I get a shot. You get lots of looks in public, but I would rather be walking around being stared at (with a mask on) than lying in hospital, fighting for my life from Swine Flu or something else. Every day, I cope with pain, weakness and fatigue and over time (although not nice) my body has just learnt to cope with a higher pain threshold and larger more consistent amounts of pain that probably most people could not deal with on a regular basis. Upon looking at me, physically I look fine, happy, cheerful and beautiful I am always on pain relief and this makes me feel normal, as if I had a regular body.I believe that our human bodies find ways to cope with pain and the leftovers of chemotherapy as a way of coping and getting through each day.
Ive found from looking at a couple of government sites that Flu Tracking or Flu Surveillance has become a huge part of what governments and universities are now looking at, in order to protect and inform the general public about the current H1N1 risk and general community infection risk.
Two helpful sites that I will be watching are (in Australia): www.healthemergency.gov.auand www.flutracking.net - Flu Tracking is an online health surveillance system to detect epidemics of influenza. The sites above are not only helpful for those of us who have suppressed or compromised immune systems, but those of us who work in key areas wherecontact withlarge amounts of the public occurregularly health, retail, travel, airport, transport, etc. The health emergency site also has 2 lists of those that have more chance of severe outcome from H1N1 some of those being: Smokers/People with obstructive sleep apnoea/Children under the age of 2 years/Indigenous Australians. I have found a lot of interesting helpful information on these sites. On the Jodies Journeywebsite front: I have added 3 new pages to my site and continue to re-mould it and aim to make it one of the best survivor websites I can. The new pages are:WHAT TO SAY GIFTS & DONATIONS JODIES BLOG 01 & renamed Jodies Blog page as JODIES BLOG 02.
My blog page was getting a little lengthy, so a this new one is now up. We are currently getting approx. 3,800 4,500 hits on this website every 90 days and I have big dreams for refining it and creating a very special, more professional site. I also have 3 media opportunities coming up; a magazine article, a newspaper article and a radio interview.
Christmas was good, no cooking and no hot Brisbane.we took the kids away to Surfers Paradise and did the holiday thing over Christmas.it was enjoyable.but, for me I think the last major holiday that I can organize for the family. It was extremely difficult to carry out and left me wondering why I started the process. Fatigue & weakness often dictate what I can and cant do. In order to keep myself as healthy as possible and listen to what my body cando, I am working with my doctors to identifyareas of family responsibility that I can no longer get involved in. Eventually, I would like 1 or 2 granny flats at the rear of our property (or my own apartment) that I can use for rest, away from family responsibilities and also to shield me from family illness, especially when the kids bring bugs/infections or illness home from school. My bloods and WBCs may indeed improve however I have to consider the likelihood that I may be somewhat immuno-compromised or immuno-suppressed to some degree in the long-term, simply because of the volumes of chemotherapy and associated drugs my body has consumed (See myTriumph page for a new fulllist of all the Chemotherapy and associated drugs thatI have had infused).
My body is not what it used to be and I can no longer pretend that I can do it all (physically) working on the computer, office work is fine in short amounts, but anything of a physical nature is simply too fatiguing and goes against what my body is telling me to do. Stop & Rest/dont do anything physical. I love my housekeeper and my LitenEasy meals (no more cooking, only for the kids). Its now learninghow to ramp down my life, so I am able to stay on top of things medically. Simplify, Protect and Enjoy what I can. Over the holidays, I was able to get some letters out to prominent peoples regarding my journey. World leaders play an influencing part in the drive for more research and awareness about Lymphoma/Blood cancers (the cures & signs/symptoms). I have received two replies from both the Duke of Edinburgh (Buckingham Palace) and the Duke & Duchess of Gloucester (Kensington Palace). More letters hopefully to come.Below are 2 diagrams regarding the structure of blood cells and also what a BMA procedure looks like. The B-Cell Lymphocytes are the ones that were originallymy diseased line of cells and the faulty cells at presentare the line of cells called:The Myeloblasts (Neutrophils, Eosinophils, Basophils).
Thank you all for your consistent and constant love & support. I get a lot of emails these days from people struggling with the same issues or going through blood diseases and other conditions. I am here to talk through and discuss issues with anyone who wants advise. We value you all so, so much. Blessings, Jodie & Family.