Birthday & Survival Celebrations

 

Waking up this morning I smile

twenty four new hours are before me

I vow to live fully in each moment

and look at all beings with eyes 

of compassion

~Tich Naht Hanh









The Jacarandas are in bloom, gorgeous!  I have just celebrated my 60th birthday and survival, fabulous!  I have recovered pretty well from my nasal radiation, inside of the nose not quite normal but overall pretty good.

It's been quite a while since I made an entry to the blog and lots has happened.  We spent a week at Wentworth Falls in the Blue Mountains west of Sydney in a dog friendly holiday rental.  It was unusually cold for the time of year and rained most of the time.  Managed to get a couple of walks in and fortunately the house was very comfy with great heating, a great find, we will be back.  The weather being what it was we got a lot of reading done and still had a lovely time.
The waratahs were in full bloom and particularly lovely this year.  Had a white one flower in my garden.  Caught up with friends which was nice also.

Late October we went to Tea Gardens to the Myall River Festival.  We had never been before so it was a novelty.  Although rain was forecast it was acutally a beautiful day and the stalls and events (woodchopping, dancing, singing, ukelele concert) were right along the river, very scenic.

This month I had a 60th birthday & survival celebration which was great fun.  On my actual birthday Glen had taken the day off and we went to Cottage Point Kiosk for lunch with a dear friend, Carolin.  It is a small cafe right on the water in Kuringai National Park. They do the yummiest Barramundi in a curry sauce.  The weather was gorgeous and we had a lovely afternoon.  My younger sister made a surprise visit from the US, which was an amazing present,  arriving before the party and staying for a week.  One of my nieces flew down from Brisbane to be there and my other niece managed to get off work to attend.  My mother came down from Tea Gardens for a week as well.  My older sister did an incredible amount of driving to make this all possible.  I am so lucky to have such a supportive and loving family. We hung balloons and other decorations and a caterer did a beautiful vegetarian spread.  A friend and a guitarist played some lovely music including one of my favourites, Leonard Cohen's Halelujah.  Two other friends sang as well, another one of my favourites, Deep Peace.  Later we played some nice loud boppy dance music got up and danced and a good time was had by all.  It was such a joyful occasion.The weather forecast said rain but it was the most beautiful evening, no rain and no wind and a pleasant temperature.  A great way to celebrate the fact that I am still here and enjoying myself despite the predictions of the doctors in 2008 that I wouldn't make it to my 60th.

Meantime I have had several doctors appointments, including with my doctor from Germany who had come out to Australia to see patients.  The pathology results have not been encouraging.  My last cancer marker CA15.3 has reached 508.  This would indicate the cancer is pretty active.   After consultation with 2 of my doctors I started on a new drug, Megace, which is a progesterone inhibitor as the estrogen inhibitor, Fareston, did not seem to be holding the cancer.  I have continue with the Fareston in case some cells are still sensitive.  This was done after my CA15.3 had reached 330.  A month later the CA15.3 was 508.  This could be due to the fact that the new drug is useless or that it has not had long enough to work.  Will retest markers next week.  The peripheral neuropathy from the thalidomide was getting progressively worse so that has been stopped, hooray!  A little scary as I now am not really on anything that is antiangiogenesis (suppressing blood vessel development so the cancer can't grow very big).  I have had a slight reduction in foot pain so can more comfortably walk the dogs.  I have added an infusion to my twice weekly regime with alpha lipoic acid which is supposed to help with the nerve repair.  Means I spend more time attached to the drip stand but if it helps that will be great.

My appointment with my German doctor was very encouraging in the sense that there are still several new things available over there that could be helpful.  I will probably at least repeat the treatment I had in January 2010, Removab,  which made me extremely ill for about 12-24 hours but which halved my circulating cancer cell count.  I had three sessions about 5 days apart and would do that again next year.  There are a couple of other options for which I am waiting to get more details.  There is also the possibility of hyperthermia, which is now available in Melbourne.  This heating up of the body makes the cancer cells more sensitive to the anti cancer drugs, so although it is not a cure it is a way to boost the effectiveness of other treatments.



Meantime I have reduced my tablet intake from 94 to 54 which is very nice.  I am now also on some new drugs for what is termed Metronomic Therapy.  The definition of metronomic chemotherapy varies, but generally it refers to repetitive, low doses of chemotherapy drugs designed to minimize toxicity and target the endothelium or tumor stroma as opposed to targeting the tumor.  For me it consists of taking Celebrex (a non steroidal anti inflammatory drug used for such things as arthirtis) and selenium in the morning and then low dose cyclophosphamide after lunch.  This is a three month regime.  I probably will not have been on this regime long enough to have any effect on next weeks cancer marker test.  I have had no ill effects except slight nausea in the morning.

My main problems now are muscle cramping at night mainly in feet and lower legs which can get bad enough to keep me awake most of the night. I have epsom salt baths, take magnesium tablets and powder and to stretches, often to no avail.  Have also tried Scwheppes bitter lemon or tonic water (they have quinine in them which is supposed to help with cramps). Valium helps but I don't want to use that more than once a week or less as it is addictive, can cause depression and makes me tired the next day.  The peripheral neuropathy continues to be a problem as is back pain and my energy levels are still not normal.

My meditation has deepened and I am doing longer sessions and enjoying it more.  I drink about 1 liter of vegetable juice a day (freshly squeezed) and eat a very healthy diet with lots of vegetables and no meat.  So I keep plugging away enjoying my days as much as possible and valuing time with friends and family.

Surviving and thriving

Linda

Radiation Burns

Happiness keeps you sweet

Trials keep you strong

Sorrows keep you human

Life keeps you humble

~ unknown





Since having cancer I have certainly learnt a lot about my tolerance to pain.  Before cancer I always thought I have pretty good pain tolerance.  Just as an example, there was the time I was on a bushwalk with a small group in Kakadu.  It was a 6 day walk with full packs (food, tent, cooking utensils).  I think mine weighed about 23kg.  On the second day during a lunch break I was swimming in a lovely crystal clear, fast flowing stream when I kicked a rock and broke a toe.  Not a good thing to do when you are way out in the bush and there are still 5 1/2 days of walking to go.  It was the third toe, so I strapped it to the second one, took some paracetamol and continued on the walk.  After a couple of days I thought I had better replace the tape.  The wet season had lasted a bit longer than usual so we were walking in water a lot of the time.  No way to keep the feet dry.  As I pulled the tape off a large section of skin came off with it.  Gruesome and leaving a red raw surface.  More pain.  Well, I finished the walk and managed to enjoy it despite the pain.  I am just telling this story to show that I can tolerate a certain level of pain.  On Xray when I got home there were three fracture lines in the toe, fortunately no displacement of the bone fragments which no doubt would have made it a lot more painful.  The photo, below, is actually from another similar walk in the Bungle Bungles (Purnululu National Park)



The point is I am not that pitiful when it comes to putting up with pain. There have been some procedures or treatment since I have been diagnosed with cancer that have been extremely painful.  A liver biopsy early on was one.  The thing I find strange is that the doctors don't really prepare you for it.  With the liver biopsy I was told why it was painful only as it was happening.  The local anesthetic that is given is only in the skin, they can't put local in the liver capsule, so when the relatively large bore needle gets to the liver it is very painful.  There have been other painful moments along the way;  trans arterial chemo embolisation of the liver, the first time I was given Zometa, severe gastritis (needing hospitalisation and opioid pain relief) and Removab treatment, active metastases in the spine.

The radiation treatment itself deserves a short mention and a photo.   There is always a planning session for radiation where everything is lined up so that the treatment is given in the right spot.  It is obviously important to then keep very still and be lined up in the same position for each treatment.  To keep my head very still and position it the same each time, a 'plastic' mask was moulded around my face in the planning session.  A hole was made over my nose area and then a wax block was made to fit over my nose.  This is done because the radiation works better if it goes through a solid surface rather than air.  For each subsequent treatment I had to lie on my back with my head placed in a head rest and the mask placed over and bolted tightly down so I could not move my head at all.  The wax block was then placed on my nose and the measurements all checked and the radiation would start.  I had 15 treatments.  These were daily with weekends off.

Now I have second degree radiation burns to my face.  It is miserably painful.  I was warned of redness, peeling, ulcerations, blisters, crusting - but no mention of severe pain.  I was given ointment and drops for crusting and "soothing".  Every ointment I have tried causes intense stinging before the so called relief.  Then the relief only lasts a short while.  After a couple of days of pain and trying my own various concoctions, particularly fresh aloe vera plant, I could get no lasting relief.  I rang the hospital and they got me to come in and put a dressing on the burn.  This stopped the burn from drying out and stopped oxygen getting in. So a lot better but not great.  I then discover that there is local anaesthetic gel that can be put on.  Again a bit of improvement.  Nothing fabulous though but at least I don't feel like curling up into a foetal position in bed most of the time, not that that would have helped because night time in bed is the worst.  I have to get up during the night to change the dressing

Truly I do not understand why the radiation doctors and/or nurses can't suggest all this helpful treatment from the get go.  Looking on the internet and at various forums this pain issue with radiation burns is common.  On top of that the face has lots of superficial nerve endings so it stands to reason that damage caused by the radiation, which really is the whole point, is going to hurt and hurt a lot.  The only warning I got was that the damage would continue to get worse for about a week after the actual radiation treatment had finished.  It is a week today.  Hopefully I am at the turning point and the pain will start to subside.  There are other drugs apart from paracetamol I could take to help with the pain.  I am taking the maximum recommended amount of paracetamol now and don't want to go over as I don't want to burden my liver, not after having had metastases there.  The problem with stronger analgesics is that they invariably cause constipation.  I already have problems with that due to other drugs I am on so don't want to exacerbate that issue. 

The least painful and least itchy irritated time is just after I have cleaned up the burn, applied aloevera, solugel and xylocaine gel and the dressings.  It gets itchy in about an hour and then it is downhill from there.


On that note I will go and take the dogs for a walk before I get to the painful bit.

Surviving and Thriving

Linda

Radiation and more

Look for the beauty in life, in people, nature 

and most of all in yourself.

~Lee (BCNA) 

 Even though we are still having some cold days, mostly the weather is warmer and certainly drier.  I am really enjoying the garden and the park across the road.  I have a white waratah in the garden that is flowering (see picture above), the Kangaroo Paws are flowering even better than when I last wrote and there are even some red and green ones that I thought had died that have come up to say hi.

The morning walk with the dogs brings me a lot of happiness.  They really know how to enjoy themselves, such happy, enthusiastic little beings.   We took them up to the Blue Mountains for the day (that's two weeks in a row) and were again blessed with wonderful weather.  The dogs were thoroughly delighted with the new smells, certainly a lot more than the view that we humans were so entranced with.

Last weekend I went to Tea Gardens again for a few days  in between radiation treatments to visit my mother.  The beauty about that area is that it is not yet overdeveloped and has a river,  stunning bay and ocean beaches with lakes and national park nearby.  It is wonderfully quiet compared to Sydney but still has some lovely cafes along the water.  Great variety of birds and can hear a different  frogs at night.  The only ones we get at are the Common Marsh frog which sounds like a dripping tap.  Get some different sounds in the park.


Finished the radiation treatment and the predictions of effects are coming true.  Very red nose and surrounding area, severe ulceration of upper gum and inside upper lip as well as the inside of my nose is very painful and crusty and bleeding intermittently.  Using aloe vera liberally plus saline nose washes and various other concoctions up the nose and under my lip.  Nights are the hardest.  Another week or so of symptoms and things should start to improve. 

On Tuesday I saw the radiation oncologist, my usual oncologist who directs the chemo and my 'alternative' holistic GP.   The radiation oncologist said all was going as expected and to see him in a 6 months for the bcc unless I was worried.  My regular oncologist was about the same i.e. playing the waiting game. The previous week I had  a blood test to recheck CA15.3 and much to my consternation it was now 177.  Scary!  Now it could be skewed by the radiation treatment and the inflammation that has caused, so retest in a month and reassess then.  I went off the thalidomide on the 2nd of September to see if it helped with the peripheral neuropathy and I am due to go back on it at the end of the month.  There appears to be no alternative to the thalidomide (for antiangiogenesis) other than maybe avastin, which is an iv drug that I have been on before and it gave me very bad gastritis, so bad in fact that I was hospitalised.  Don't really want to use that again.  It would also mean having the infusions at a clinic as I would be unable to buy the drug and do the infusion myself. 

The GP came up with a good plan for working out the nausea.  He thinks it is gastritis and likely  due to one or more of the supplements I am taking or just the large volume of tablets (now up to 88 per day).  As more side effects start to develop from the anti cancer drugs additional supplements get added to try and counteract those effects.  That is on top of the various supplements that are 'anti cancer', immune boosters or supportive for various other body organs or functions.  Part of the plan is to not take any tablets other than Fareston for a few days, take slippery elm and when nausea subsides we have worked out a 4 stage re-introduction of the other tablets.  Can't do it one by one as it would take too long.

This week I am going to take it easy and let my face recover from the radiation.  Next week we are going to the Blue Mountains with the dogs for a full week.  Fantastic!

Surviving and thriving

Linda

Cancer Progress

Don't wait until you have no more suffering before allowing yourself to be happy.

~ Thich Nhat Hanh

I like this quote as life seems to be full of suffering but we don't have to focus on it exclusively.  It reminds me of what I used to tell myself when I was still working that I couldn't wait to have holidays or enjoy myself and take time off until I retired because I might not get to retirement, or I might not be well in retirement.  Well that certainly turned out to be true.  However, despite the difficulties and challenges that life seems to throw at me I do still have times of enjoyment, contentment and happiness.  Sometimes it takes effort and I think it is a skill that I can develop more.  Certainly the Mindfulness Based Stress Reduction course I am doing is helping.  Basically it is mindfulness meditation which is like mind training to be more fully in the present and be able to change focus and access the deep calm that is within.  We did a lovely meditation in the last class called the Lake Meditaton.  It is a meditation where you imagine a lake and observe the changes on the surface with changing weather conditions, times of day etc.  The beauty is that whatever is going on on the surface the depths remain calm.  It is not that there is nothing happening below the surface, there can be plenty happening but it is relatively calm.  I find it a great metaphor for the mental and emotional upheavals of day to day life.  Hopefully with more practice I will be able to access the still calm waters more often.
 

When my cancer marker was rising at about 8 points per month to reach 68 I was getting a little worried.  Nothing compared to the panic when at the last test it went to 106.   Somewhat reassured by follow up bone scan and CT scan.  Checked everything except my brain and everything seems to be pretty stable with just some activity in the tumours in my pelvis.  It is unlikely that I have tumour(s) developing in my brain as I have no neurological symptoms related to the brain, just the usual 'chemobrain' stuff.  The cancer markers can be unreliable and can be affected by inflammation.  I did have a very bad cold when the blood test was done so I am hoping that is all it is.  I am due for another blood test in a couple of weeks.

Symptom wise it has been a rough month or so.  Apart from the cold I have had severe nausea.  I started a couple of new supplements to try and alleviate some of the side effects of the Fareston and Thalidomide, particularly the peripheral neuropathy as walking is becoming more difficult and the neuropathy is starting in my right hand,  but had to stop them as I was just too sick.  Now I am trying to work out which particular supplement is causing the nausea and general malaise.  This morning I started back on one of the supplements and did get a little nauseous but only for a couple of hours.  Will take it again tomorrow and then reassess.

My doctor in Germany also suggested I start intramuscular injections of methylcobalamin intramuscular twice a week.  I already have twice weekly intramuscular injections of artesunate.  This poses a bit of a dilemma as those who know me might remember that I do not have well developed buttock muscles or leg muscles for that matter.  In any case I have started doing the methylcobalamin into my leg muscles and continue with the artesunate into my backside.  A pity they can't be given intravenously with my twice weekly infusions but ce la vie.

Cancer wise I feel like I have become a bit of a cancer magnet.  Since I was diagnosed with stage 4 breast cancer I have  also developed a malignant melanoma (surgically removed) and now have a basal cell carcinoma on my nose which is so extensive it needs radiation treatment.  The reason I did not really notice its development was that the area became a little red when I switched hormone treatments to Fareston after my spinal radiation treatment in February.  This drug caused a whole range of skin changes with lots of little blisters, red spots and itchiness.  It was only when the only area left with any change was that on my nose did I decide to get it checked out.  The surgical option was to remove it and take a skin graft from my neck and put it on my nose.  I didn't really like that option so have gone for the radiation instead.  It seems I can expect skin burning and blistering as though I have a really bad sunburn and the inside of my nose will ulcerate, bleed, crust and be generally very painful.  Something to look forward to!  At least it is only a matter of months and it should all settle down again.  If it doesn't work I can still have the surgery.  I have already found a few sources of Aloe Vera plant  which I intend to use liberally and hope it is not as bad as predicted.  I should be fine for the first week of treatment which is daily 5 days a week for 15 treatments.  I am extremely lucky that the hospital is really close so it won't take up much of the day.


The weather today is stunning.  There has been so much cold and rainy weather this winter it is lovely to see blue sky and sunshine and feel a bit of warmth.  The garden has already gone into Spring mode with lots of flowers.  Plenty of Fresias with their delicate sweet aroma wafting all through the front garden. The Kangaroo paws are coming up, the flannel flowers are in bud, the azaleas are looking lovely and the Geraldton Wax I planted last year looks beautiful. Life is good.


Survive & thrive

Linda

Treatment Side Effects

Don't save anything for a special occasion.

Being alive is a special occasion.

~ anonymous



It is 10 am and I am still in bed.  Usually I get up by 7am do some yoga and meditate then shower and have breakfast followed by a lovely walk in the park with the dogs.  Today I have a very bad head cold with lots of coughing and snuffling, well not so bad now after dosing up with flu tablets.  I took those tablets yesterday as well and it made me realize how much pain I usually put up with during the day.  The flu tablets contain an analgesic and it is really making me feel much more comfortable.  Normally I only take pain relief medication at night so I can sleep, during the day I just try and distract myself from the discomfort.  Today I will write a bit about side effects, but first a little update on other things.

My sister came over from the US for two weeks which was great, lovely to spend time with her.  We spent some time with our mother and did some fun day trips including whale watching just outside Sydney Harbour.  It was a perfect sunny winters day with incredibly calm seas.  We saw several pods of Humpback Whales, none breached but one rolled on its back and waved its flippers in the air.   It was a fabulous afternoon.  My sister returned to the US on the 5th July.  It is always emotional saying goodbye.  Have just come back from a few days on Magnetic Island.  We were both very tired so it was nice to go somewhere warm, quiet and easy.  Even had a swim in the ocean at a lovely little beach even though the water was very cold.  Also found a couple of places that made fresh vegetable juices and healthy lunches.  Still came back with a cold though.  Probably caught off someone on the plane on the way up to the Island.

As far as my cancer and the last scan goes I did go and see the radiation oncologist who viewed the scans and the report and decided that the active tumours were in the collar bone and on the rim of the ilium (pelvis).  The rest just seems to be arthritis.  This would seem to indicate that current treatment is holding the cancer in check reasonably well.  Cancer markers are continuing to increase, last month up to 68.  I will have another test in the next few days and I have an appointment with the oncologist next week.

So, at the moment I am concentrating on continuing with current medication and dealing with the side effects.  The peripheral neuropathy is getting worse and is affecting my legs up to my knees with the feet badly affected.  It is becoming hard to balance on uneven ground and my feet get very sore if I walk any distance or if I am on my feet for a long time.  It is weird how my feet can feel numb and painful at the same time.  Muscle cramps are continuing although they do seem to be a bit better since trying a new, and very strange,  remedy - a cake of soap in the bed at night.  I have no idea if the improvement is coincidence or real but it is a great relief not to be leaping up out of bed with severe and painful muscle cramps at regular intervals during the night.  I get up and stretch my calves only to have the front muscles cramp.  I also have cramps in my feet, hand and different parts of my back and neck.  I have to be careful about twisting my back or neck as it can cause severe muscle spasm.  Most mornings I do some yoga to try and stretch the tight muscles but it can exacerbate some of the cramping on the opposite side to the one I am stretching.  I think overall the yoga does help.  Joint pain is an ongoing problem particularly hands, hips and knees.  Then there are general aches and pains throughout my body.  Headaches are generally mild and of short duration.  My eyesight is getting worse, possibly the cataract I am developing as a side effect of the hormone treatment.  I don't think my mind is as sharp as it was either but not sure if that has anything to do with the drugs.  General lethargy continues to be a problem probably a side effect of the thalidomide, at least it helps me sleep.  I still get pain in my back where I had radiation on two tumours in the spine from time to time.  I suppose that is the bone still healing (I hope).

Next on the agenda is to see what the cancer marker is doing and to see the oncologist and reassess current treatment and timetable the next scan/test.  Meantime I have just started a new supplement that is supposed to help heal the damaged nerves and alleviate the peripheral neuropathy.  As this is starting to cause some disability  I will also discuss this problem with the oncologist.  It seems to be related to when I started the hormone treatment, Fareston.  It could be a cumulative effect as it is also a side effect of the thalidomide and zometa that I take.  The alpha lipoic acid and p-5-p don't seem to have helped.

I have started a course on Mindfulness which runs over 8 weeks which I am hoping will help me be more in the present and worry less about the future.  The homework for that at present is body scan meditation which I often do anyway.  I am already a lot better about enjoying day to day activities and the little things in life.  Funny how a life threatening illness can do that for you.  I am really enjoying doing my cross stitch embroidery.  It is very relaxing and keeps me in the moment while creating something I like.  It is also physically manageable, just the odd cramp in my hands.

Despite the cancer and the side effects I am in pretty good shape.  The 3 year anniversary of my diagnosis has passed and I am still here, that's already a year past the original prognosis.


Surviving and thriving

Linda

CA15.3 and more

If there is no wind, row.

~ Latin Proverb









Cancer marker CA15.3 has continued to rise and is now up to 60.  This has been rather disconcerting so I had a CT and bone scan to get a better picture of what is going on.  The good news is that there is no cancer in the liver and lungs.  The bad news is that there may be new tumours in the sternum and sacrum.  Both of these are at the joints i.e. at the join of the right clavicle with the sternum joint and right sacroiliac joint.  This makes it hard to differentiate it from arthritis which is showing up on both sides at these joints.  No pain in these areas at this stage.  No change in treatment either.  This is good as I am feeling reasonably well and chemo would have made me feel sick for quite some time.  There is also a limit to how much chemo is given over a lifetime and this means it can be held in reserve if it is needed later.

On recommendation of one of my doctors I had a break from most of my tablets (10 instead of 84) for a few days.  I actually had more energy on those days.  Not sure if that is coincidence or not.  Will have another break in a few weeks and see if I get the same result.  I have contemplated and have discussed reducing my tablet intake with the doctor but it is hard to know which ones to stop.  It is impossible to know which are helping and which aren't.  Maybe they all help but maybe I don't need them to stay healthy.  I have actually increased the tablet intake by adding alpha lipoic acid which is supposed to help with the peripheral neuropathy.  There does seem to be some slight improvement but I will see how it goes over the next few weeks.  It does seem to be a side effect of the thalidomide and basically means the sensory nerves to my feet, and occasionally my fingers, are firing off.  This gives a combination of numbness and hypersensitivity, which seems contradictory but occurs nonetheless.  I am reluctant to reduce the dose of thalidomide at this stage.

I am managing to do my yoga and meditation each morning and walk the dogs, weather permitting.  I have improved my diet a bit again with increased vegetable juice and raw vegetables.  I am hoping that will increase my energy levels.  Weight gain continues to be a problem with it being a side effect of two of the drugs I am taking even though I have reduced my food intake.  Just when I had discarded all my 'fat clothes'.  

Went to Melbourne and saw the Tutankhamun exhibition, it was fantastic.  The craftmanship of the statues and jewellery was amazing.  Beautiful.

So it is steady as she goes, monitoring continuing with CA15.3 over the next couple of months and enjoying life as much as possible.

Surviving and thriving

Linda

More on CA15.3

 

 Perseverance is not a long race; 

 it is many short races one after another.

~ Walter Elliott






The last cancer marker result was disappointing.  It has gone back up to 52.  This is not much of an increase from 49 but 49 is already a bit high.  That result was from blood taken on 5th April.  I will get another one done next week and will be seeing the oncologist on Friday 13th, hopefully it will be a lucky day and the cancer marker will be going down again.  If not I will need to reasses treatment options.  Have had a blood test to be sent to Greece for a cancer cell count.  Ideally I would like to get this done more regularly but it is very expensive.  There is not really any one test that is definitive for where the cancer is at so a combination of non invasive and non radiation type tests seem to be the way to go.  The PET, CT and MRI's all use radiation so want to minimize those when possible.

Symptom wise nothing much has changed other than increased nausea.  Not sure if it is the side effects of medication or just too many tablets for my stomach to deal with or cancer progression.  Joint pain continues, muscle cramping is somewhat under control with large doses of magnesium.  Energy levels are not too bad, managing to walk twice around the park with dogs but still pretty tired in the afternoons.  Toes and end part of feet are still a weird combination of numb and hypersensitive.  Hot flushes preceded by adrenalin rushes (anxiety) continue but are not debilitating other than waking me up during the night.  Back pain is intermittent but not radiating around the chest.  Morning yoga is helping with lower back pain and eases the cramped muscles in my legs and back. Haven't seen the Xray report yet but the Xrays of my spine look ok to me other than possibly some compression of T9.  Will get the report when I see the oncologist.

I have had a thermography done.  This is a non invasive scan of the body which picks up soft tissue inflammation by detecting and mapping temperature variations on the skin.  Can pick up soft tissue tumours (e.g. liver) but not any use for bony lesions.  Thought it might be a good way to keep an eye on progression.  Also trying a few other alternative treatments.  One is a electro-dermal screening mechanism which works on detecting out-of-balance meridians and then tries to re-balance them.   Have made an appointment with an Intuitive healer who includes Reiki and psychology.  It would be good to be able to reduce the side effects of the cancer and medications so that my quality of life is the best it can be. 

We had a wonderful 2 weeks holiday in the rented campervan.  It was a slow trip up the coast to Byron Bay and down again.  We were going to go inland and back down but it was so lovely at Bryron Bay we ended up staying there and enjoying the warm weather and ocean.  Saw some lovely spots on the way up, highlights were Harrington, South West Rocks, Queens Lake and Iluka.  We were very lucky with the weather considering how much rain there has been.  Had rain first few days but it always seemed to clear up for a lunch stop and the rest of the holiday was lovely and sunny and warm until the last day when the rain returned.  Would definitely rent a van again although we will try a smaller one next time and see how that goes.  I would like to try a caravan as well.


 

I am having some overdue maintenance done at home by a handyman.  I kept thinking I would get well enough to do it myself but 3 years later it is just not happening so I am getting someone else to do it.  Just had tree loppers in yesterday to prune some trees and remove a tree that had come down in a storm.  Gearing up to get some paving done on the back patio as well.  I will concentrate on doing some gardening, that is about all I can manage.  At least I am still above ground and my quality of life is pretty good really so I am grateful for that.

Surviving and thriving

Linda

Cancer Marker CA15.3

Our greatest glory is not in never falling,

but in rising every time we fall.

~ Confucius







My visit to the oncologist was much better than expected.  My cancer marker C15.3 has come down from 78 to 49.  Hooray!!!  Cancer markers are tricky things and individual.  Mine have been quite good in terms of reflecting where my cancer is at.  At it's highest it was 80 and the lowest was 29.  Some people have it in thousands.  My understanding is that it is not the amount per se that is relevant but the trend for the individual person, whether it is going up or down.  Some people don't have the marker and for some it is not a reliable indicator.

There does not seem to be a test that is completely reliable.  PET , MRI, CT scans all have their flaws and usually you need more than one test to check what is going on.  If you have a relatively reliable cancer marker that seems to be very lucky as it is easily checked with a simple blood test.  The scans all contribute more radiation to your body and they are more expensive.  The laboratory in Greece that I sometimes use does do circulating cancer cell counts from a blood sample.  It is controversial as to it's accuracy but in conjunction with other assessments can be quite useful.

Everything else in the blood screen was good.  Liver and kidney function all ok and red and white blood cell counts all good.  The new anti estrogen drug, Fareston, is causing mild problems with skin reactions.  Lots of itchy little blisters with red lumps all over my body.  Mostly arms and legs.  Oncologist thinks it is an allergy reaction so I have started taking antihistamines.  Will see how that goes.  Hopefully some improvement.  At least I am not getting as much pain in my hands and feet although hips and knees are just as sore.  Muscle cramping is about the same, as are the hot flushes, head aches, nausea and constipation.

Generally I am feeling quite good.  Still getting tired enough to need a lie down most afternoons but better than when I was first diagnosed.  Walking the dogs in the park across the road is a highlight in the morning especially when it is sunny.  It is a lovely park with a couple of creeks running through it with little cascades and plenty of trees and shrubs.  It has about a 1 km circuit with some undulations so I also feel like I am getting some exercise.  When I am having a really good day I manage to get around twice.  The dogs love it too.

I have also taken up cross stitch.  When I was visiting my mother I found one in a shop in Hawks Nest with 4 green budgies that appealed and thought I would give it a go.  My mother has been doing cross stitch for 50 years and does some beautiful work.  She has recently made one for me with a buddha on it.  Beautiful.  Never thought I would have the patience for it.  My older sister has done some and enjoyed it but it never appealed to me before.  I am really enjoying it, finding it very soothing.  It requires enough concentration so that other thoughts don't get a chance but not enough to be taxing.  Having cancer really does teach patience and I have had to slow down so much it is now a pleasant hobby.


Surviving and thriving.
Linda

Radiation....

Patience is the ability to let your light shine

after your fuse has blown.

~ Bob Levey

Radiation was daily for 10 days with a weekend off in between.  The treatments were short and not much of a problem other than issues with muscle cramps.  For the treatment I had to lie face down with my head slightly up in a foam support which arched my back slightly.  I then had to put my arms above my head which exaggerated the arch.  I have had problems with muscle cramping in my legs, feet, hands and back (side effect of something I am taking?) and there were a few days when I was having trouble staying in position for the radiation.  The idea is to lie perfectly still once you are in position as the radiation beams are aligned to hit the right spot.  Some days it took a few goes before I could manage that.

Side effects were not what I expected.  No skin burning but my eosophagus was obviously damaged and it became very painful to get food through into my stomach for about two weeks or so after treatment.  Nausea was also a problem from early on in the treatment and now is intermittent, some days are fine other days are not so good.  Not sure now if it is still the after effects of the radiation or if the new anti estrogen drug (Fareston) that I started immediately after radiation finished.

The one side effect I did expect and got was tiredness.  The nausea and tiredness are in any case ongoing problems that I have really had for about 18 months or so, well actually the tiredness has been a problems for about 2 1/2 years.  I am taking so much stuff and it is difficult to know what the cancer is actually doing so that it I can't really pin point the cause of either the nausea or the tiredness.  Is it from treatment I have had or from treatment I am on now or the cancer itself???  I think that more than half the issue with cancer treatment is dealing with side effects rather than the actual cancer symptoms, but who knows.  Oncologists don't seem to want to discuss side effects much other than prescribing more drugs that cause more side effects.  For example, the treatment for nausea causes constipation.  If I then take something for constipation I get cramps and/or diarrhoea.  So I just cope with low grade nausea (no vomiting) so I don't have to deal with constipation etc.  Same with most of the stronger analgesics, they too cause constipation.  Anyone who has had really bad constipation will know how bad that experience can be, and although I am able to give myself enemas, it is a pretty unpleasant experience all round.  So  I manage with just paracetamol which does not have that unpleasant side effect but takes the edge off the pain.

One of the main reasons for radiation to bone metastases, especially in the spine, is for pain control.  In my case it was also necessary to preserve the vertebra as the tumour in T9 was so extensive.  In respect to the pain the treatment has worked.  During the treatment I had reduced pain which returned soon after.  Since then however there has been further reduction in pain.  I am not getting any radiating pain going around the rib cage to the sides and front and the back pain has definitely lessened.  Hopefully that is a sign that the radiation is working.  Half way through the treatment I found out that the treatment is only effective in 70% of cases.  Why can't the oncologists fully inform you prior to treatment.  I would have still gone ahead but the lack of information is frustrating.  It is like getting blood from a stone.  Very little information is volunteered.  If you don't ask the right questions you just don't find things out that may be pertinent.  The problem is I don't always know what the right questions are even though I do a lot of research and participate in breast cancer forums.

Today I had a blood test to check my red & white blood cells, kidney and liver function and to see what the cancer marker CA15.3 is doing.  If it has gone down that would be a really good sign.  If it goes up it doesn't really clarify anything much.  It may mean the cancer is progressing or it may just be that the cancer that was radiated is breaking down and releasing the proteins.  So it makes it difficult to decide on the course of treatment.  I am feeling relatively ok, some days are even quite good and I feel almost 'normal'.  So do I then continue just with what I am on now and risk that the cancer is progessing or do I start chemotherapy and feel like shit for the next 6 months?  Even then that might not work either and then I have lost six months of quality.

Meantime we are planning a little holiday.  On the 3rd April we are renting a campervan and spending 2 weeks on the road.  We are going north along the NSW coast to Byron Bay and then heading inland a bit and coming back down.  Intending to keep a very leisurely pace and look at everything that interests us.  We also have a few friends on the way we will visit and we plan to just chill out.  Never traveled that way before but we both like camping and I imagine this will be a more comfortable camping trip.

Went to visit my mother again in Tea Gardens last weekend and the weather was stunning.  Glorious sunny days and lovely and warm.  Had a picnic lunch by the river, a swim in the bay (someone got bitten by a shark there a few days later - yikes), and iced coffee at our favourite cafe on the water - the Boatshed.  All in all a lovely relaxing time spent.  It was also the first anniversary of my fathers death so it was good to spend that time with my mother.  We had dinner at a restaurant on the river that dad loved going to, nice to remember him enjoying himself.

Now will wait and see what next week at the oncologist brings.

Surviving and thriving

Linda

Cancer Progression

 
The best things in life

are nearest:

breath in your body,

light in your eyes,

flowers at your feet,

the right path before you.

~ Robert Louis Stevenson

It is amazing what a difference a few weeks makes.  It has been tough and stressful.  The PET/CT scan I had on Febuary 1 was really bad news.  5 more new tumours and the tumour in vertebra T9 was now taking up most of the vertebral body and T11 now also had a tumour.  I panicked.  My great fear was that the structural integrity of the vertebra T9 was compromised and could fracture or collapse at any moment.  Worse case scenario was paraplegia.  Yikes.  Had an MRI on the 3rd, saw the oncologist on the 8th and had a more detailed CT of the spine on 10th.  All to be assessed by a  radiolgy intervention specialist to see if vertebroplasty (pumping of 'cement' into the bone to give it support) was an option.  Also saw a surgeon that day to assess possible stabilisation of the spine with steel rods if cementing was not possible or not enough.  It was a really scary week.  I felt I was walking on eggshells and worried that any sudden movement or jarring could mean collapse of the vertebra and paraplegia.  It was pretty hard to stay positive.

The good news was that the tumour in the vertebra was a mixed lytic and sclerotic tumour.  The sclerosis means that there is strong bone within the tumour and in this case enough of it that imminent collapse was very unlikely.  It also meant that vertebroplasty was not an option.  No horse riding or bunjy jumping, but otherwise ok.  Phew!!  Surgeon said there was more chance of becoming paraplegic with the surgery than from the tumour at this stage.  In other words very low risk. Back pain was increasing and radiating around the ribs to the front of the chest and I am sure the stress didn't help with that.  The rapid progression of the cancer was still scary but I didn't feel as panicked.

So, I still needed to deal fairly quickly with the spinal issues and also with the cancer progressing so quickly generally.  The Aromasin obviously wasn't working.  More visits to oncologists.  Included this time was a radiation oncologist as well as my chemo oncologist.  Now the plan is that I have radiation treatment on the spine from vertebra T8 to T11 starting today.  I will get 10 treatments, one a day, except weekends.  As breast cancer metastases are relatively sensitive to radiation a fairly low dose of 30 Gy is used so there should be minimal damage to surrounding tissue - main concern is the spinal chord of course which lies right next to the vertebral body where the tumour is.  Fortunately, these days, the radiation is beamed from different angles and only where the beams converge do you get the full dose.  This also helps protect surrounding tissue although I may get some effects to intestine and liver.  May also get some burns on the skin.   Hopefully no lasting damage to spinal chord which apparently copes well with that level of radiation. I will start a new hormonal drug, Farestin, as soon as I finish the radiation.  This is again an estrogen suppressor but works on a different pathway to the 3 previous hormonal drugs I have been on which were all aromatase inhibitors.  This is a pure anti estrogen.

Treatment progress will be monitored.  I will also have a blood test for the cancer marker, CA15.3, three weeks post radiation and revisit the chemo oncologist then.  The last CA15.3 was increased again to 78.  Some people have the marker well into the thousands but it is a relative and individual thing. The highest level I have had was when I was first diagnosed at 80.  I have had it as low as 29.  It is going up at more that 10 a month.  The results in 5 weeks will determine what other treatment I may need.  Chemotherapy will be an option then.  The reluctance with that is that I am feeling physically pretty good.  Chemo would be longer term (average is 4 months) and will make me sick.  If the new hormone treatment can hold the cancer and stop progression it may be better to just leave it and keep the chemotherapy for later problems if they occur.  There is also a limit as to how much chemotherapy the body can tolerate over time.  Unfortunately no brakes on the cancer spread while having the radiation to deal with the spine.

So, I am trying to enjoy my physical well being such as it is. The radiation should resolve the back and chest pain issues.  Now that I have a treatment plan I feel like I can get back to a more normal life.  I am very lucky that the radiation can be done at a new hospital 5 minutes away so that should have minimal impact on my daily activities.  I have not returned to Tai Chi.  A combination of the back pain and being too busy with appointments and research to get there.  Dog walking also suffered and I am just getting back into that the last couple of days.  I did spend a lovely couple of days visiting my mother at Tea Gardens in between appointments.  Also bought a portable zero gravity chair to help take the weight off my spine. Very comfortable.

Surviving and thriving

Linda

Overcoming Setbacks

                                                                                       
In overcoming fear and sharing    

our stories with others, 
we find the truth about who we really are 
- and discover that we are not alone.

~Lisa Hammond








Good grief, can't believe how many months have passed since my last entry.  My scan results in October really did hit me hard, emotionally.  Also my monthly CA15.3 (breast cancer marker via blood test)  has been increasing every month since then which hasn't helped my demeanor.   I am coming good though, despite the results.  My energy levels have been very good compared to the last couple of years.  I can manage a lot more and though I still get pretty tired in the afternoons, I am managing  a lot more physical activity.  Getting back into some gardening which I really enjoy and that helps lift my spirits.  Tai Chi classes have been on summer break but start again soon and I am looking forward to returning.  Managing more walks with the dogs in the bush.

Treatment has not changed very much.  I have started a different estrogen suppression drug, Aromasin instead of Arimidex.  This has not stopped the increase in the cancer marker but apparently it can take a while to get going.  I have  increased the amount of Haelan  intake and have added low dose Naltrexone once nightly (between 2am and 4 am).  I have stopped chelation for mercury as it was not making any difference and the infusions of EDTA were making me feel pretty sick on the days I did them.    So now I do twice weekly infusions of 30g vitamin C and glutathion.  Also twice a week intramuscular injections of Artesunate, once weekly subcutaneous injection of Polyerga.  Coffee enemas twice a week - a different kind of long black.  My tablet intake is down to 77 per day.

Main physical problems day to day are side effects of some of the drugs.  Muscle cramping, joint pain, particularly hands and feet.  Feet hurt mostly when I first get up and it is difficult to stand.  That passes pretty quickly.  Hands are sore most of the time.  Insomnia seemed to be under control for a while, which I assumed was the thalidomide overriding the other drugs.  Last few weeks insomnia is back so I have been up a lot during the night.  Not affecting my energy levels too much so far.  Weight gain is also a problem with about 1kg going on a month.  I have gained 11 kg since last January.  Now getting very serious about stopping that trend.  Hard when two of the drugs I take increase appetite and seem to increase deposition of fat despite increase physical exercise.  Mainly reducing carbohydrate intake at night and eating smaller portions.  I am doing as much exercise as I can manage.  Have had some back pain but do not think it is the tumour in my spine unless it is referred pain.  Get some discomfort in my armpit  most days but it is not debilitating.  Only occasionally does it get more severe and feels like some one has stuck a knife in my side.  Muscle cramping was severe for a couple of months but somewhat better now.  Again mostly affecting hands and feet but also legs and back.  Quality of life generally is really pretty good.

Emotionally have been trying to stay positive and enjoy my level of wellbeing and life in general.  Counting my blessings so to speak.  Mostly I am pretty good although struggled a bit for some weeks last year after my scan results.  Have had a few lovely holidays.  Went to the Blue Mountains west of Sydney and to Cairns, up north, with my mother, sister and a family of my sister's friends from the USA.  Had a great time and the weather was perfect.  Right between rainy periods and certainly no floods in sight when we went late October.  Spent three weeks at Hawks Nest in December/January.  We had a lovely Christmas with my mother, sister, brother in law and my niece, Alison.  Most enjoyable.  We had rented a house that allowed dogs and it was pretty comfortable and within walking distance to the river where we could watch dolphins coming in from the bay.  Didn't spend a lot of time at the beach as it was often quite windy but still had a very relaxing time.  We spent last weekend in the Blue Mountains.  Managed to rent a cottage that allowed our three dogs, last minute, spur of the moment thing and again were very lucky with the weather.  A friend who lives up there took us on a lovely bush walk with stunning waterfalls where we could take the dogs.  Four people and five dogs all having a great time.

Australia Day was this week and we invited four friends around for a fish barbeque lunch.  It was a very hot day and we all ended up in the pool.  It was a relaxing and enjoyable time despite the personal difficulties several of us are having.  That seems to be the trick.  Living in the moment and enjoying what we have around us at any one time, not worrying about what might happen tomorrow and being truly grateful for what we have today.

Having said that.... my next scan is next Tuesday,  a blood test for the cancer marker on Friday and a visit to the oncologist the following Tuesday to reassess treatment based on the results.  Meantime I feel inspired to catch up on maintenance around the house and garden that has been somewhat neglected.  That helps keep me in the moment and gives me a lot of satisfaction in seeing the results of my efforts.

 



I still feel my motto is relevant

Survive and thrive!
Linda