BLOG 23
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 body's 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 (couldn't 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 a funny 'are you 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 don't 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.
I've 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.au and 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 where contact with large amounts of the public occur regularly 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.
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 can do, I am working with my doctors to identify areas 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 full list 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/don't do anything physical. I love my housekeeper and my Lite n Easy meals (no more cooking, only for the kids). It's now learning how 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 originally my diseased line of cells and the faulty cells at present are 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.
