Bouncing Back

When we do the best that we can, we never know what

miracle is wrought in our life, or in the life of another.

Helen Keller



Feeling better today. Spent the morning catching up on emails and had a swim after lunch. Not many laps but at least I got in and had a nice little splash about. Thrilled to see a red cardinal today, bright red with a little top knot. It didn't hang around long enough for a photo shoot.

Back on the iv drip in the afternoon for vitamin C and Zometa. Very time consuming, finished just before 6 pm. Get very thirsty from the vitamin C even when I slow the drip right down. Guzzle lots of water.

Booked flights to Germany for January and looks like our current house sitters will be able to oblige again then. Quite a relief to get that out of the way. The clinic has moved to just south of Stuttgart in the Schwarzwald. Near lots of forest but won't have any alps or a lake nearby. No doubt we will get plenty of snow. Will be away about 17 days and get back in time for Glen to go back to school.

Another lovely day of living.

Surviving and thriving

Linda

A Challenging Day

Adversity has the effect of eliciting talents which,
in prosperous circumstances,
would have lain dormant.

~ Horace 65-68 B.C. ~




This is one of those days when I really need an inspirational quote. Woke up feeling like crap (excuse the pun) and then had a bout of severe constipation. For those with sensitive stomachs, read no further. What follows is the result of opioid pain killers and anti nausea tablets. There is always a price for the relief they give at the time.

Spent an hour and a half in the bathroom and the process included much straining and the use of rubber gloves and an enema kit. Still wasn't enough to clear me out completely but it was a good incentive to do a thorough clean of the bathroom afterwards. Ewwww. Took another few hours of intermittent bathroom visits to feel intestinally better but my energy levels today have been appalling. Spent most of the day in bed but later in the afternoon managed a bit of a swim and sun bake.

Did manage to hold a book up for some of the time in bed and read quite a bit of Lance Armstrong's second book 'Every Second Counts'. Finding it quite a good read as it describes a fair bit about the Tour de France which I enjoy watching when it is televised. It also is a bit more philosophical than his first book and deals quite a lot with issues related to fear of returning cancer and the changes cancer made to him personally and his outlook on life. The other thing I liked was his references to the fact that it is a team effort dealing with cancer both practically and emotionally. I could say a lot about that but at the moment I am not up to lengthy typing.
I will get to my 'team' and the importance of various people in it in due course. Let me just say I owe my success so far to a lot of different people and their varying degrees of input.

One more thing I realised today has to do with my hair, or lack there of. When I first got cancer I thought about losing my hair and didn't think it would matter. I have been surprised at how much it has mattered, I find it quite disturbing and am probably a bit obsessive about it. Today I thought that it was due to the fact that it is a constant reminder of the fact that I have cancer - a real reality check every time I pass a mirror or scratch my head. This seems to disturb me more than I thought it would. The good thing about it is that it is also a reality check on the toll on my body of the treatment. Yes, it is getting rid of the cancer but my body is being battered by the treatment as well. My lack of hair can be a reminder that it is ok to lie in bed some days, to feel awful and not try and push myself too hard. I can look at my head or run my fingers through the wispy bits of hair left and say 'this is hard on the body - look what it has done to my hair!'. In some way I find that reassuring. There is a legitimate reason why I can't swim 50 laps or go for an hours walk. I just need to be patient and I will regain my energy and fitness.

Surviving and attempting to thrive

Linda

Payson

Strands

Experiences
slipping through our being
like particles of beach
cascading between our fingers
or gathered together
into castles
dreams becoming reality
ever changing
structures
of creativity

Linda de Haen

Started the day with severe nausea, remedied by a Zofran tablet. It made me think about all the things I take and why and that it requires some effort to keep all the symptoms under control and fight the cancer and boost the immune system etc. So I have decided to list the things I take on a regular basis with some explanation before describing the lovely day I had.

I have also had some positive feedback about this blog site and it made me think of the inspirational input I need from time to time to keep positive. That is why I have been putting the inspirational quotes in, I didn't want my blog to be just an account of day to day struggle. I wanted a record of the positive things that keep me going as well as the struggle that this journey sometimes requires. I have also come to believe that life has times of struggle regardless of your journey. Admittedly some peoples struggle seems much greater than others and there seems to be no rhyme or reason for that. It seems to be random and has nothing to do with justice or fairness. Whatever struggles we have to deal with in our lives, I believe we can get through them more easily if we continue to dream and continue to be grateful for the good things in our lives. The inspirational quotes I have used reflect these beliefs I have. We may not have a choice about what life deals us but we have a choice how we deal with the difficulties life presents.

That's my navel gazing for the moment. Now to the nitty gritties of daily medication. I take mostly 'supplements' as opposed to prescription medication. Many of these I have researched and are either helpful directly in combating cancer or in building the immune system so it can deal with the cancer. Others are vitamins or minerals that are either just generally good for anyone or are specific for nutritional deficiencies common for breast cancer sufferers and I have been tested as being deficient in e.g. iodine.

Daily I take: Megazyme (20), PSK (6)- a chinese fungus, Bio Zinc(1),multi vit (1), Boswelia Vayara(2) - boosts immune system, Ca D-glucarate (2), Calcivit (1), Arimidex (1), Chlorella (6), CoQ10 (2), Curcuminoid (2), Fish Oil (3), Hepa Merz (1) - liver support, Indole-3-carbinol (2), Potassium salts (2),Prilosec (2), Iodine (1 drop), Magnesium (2), Maitake(1), Melatonin (1), Priorin(3), Probiotic (4), Quecertin (4), Reishi (1), SB Floractive (2), Selenium (2), silymarin (2), vitamin D (1 per week). About 70 per day, give or take.

Injections are: thymoject (injection twice weekly), Faktor AF2 (iv injection once a week), vit C (iv injection once a week). This does not include chemo which is more intermittent and at the moment includes epirubicin, gamazin and I also take zometa and avastin.

Then I try to have at least two large vegetable juices a day and I always start the morning with a lime juice diluted with warm water. Then there are other tablets to counter side effects of chemo. The most common one I use is Zofran for nausea. This has it's own side effects namely constipation and it aggravates my nasal ulceration (another side effect of the chemo which I have had since May). I also massage the scars from my mastectomies. they are about 16 cm (6inches) long each. The massages are followed by stretches as I want to minimise contracture and maximise flexibility of my arms.

That's the routine for each day more or less. It then depends on how I am feeling on the day, it is very variable at this stage.

Having got through all that Paula and I had a lovely morning driving up to Payson to take one of the dogs, Kona, to the vet for a post knee surgery check up. Payson is at much higher elevation to where we are at Goldfields and it is a lovely hours drivve to get there. With the changing altitude there is a change in vegetation as well so it is a very interesting drive. There are also some very panoramic views on the way. It being Saturday all the bikes were out for a ride. Harley Davidsons are very popular here and mostly riden by older people, baby boomers I guess. They are the ones that can afford to buy them, they are pretty expensive even here in the US. The climate here is great for bikes as there is so little rain.

After we had been to the vet we went for a little drive to take Kona for a cool off at the river. Unfortunately there had been recent fires and we could not get to the river. Kona got a little leg stretch and courtesy stop at some old indian ruins at Shoofly Flat. Paula had also noticed a little general store on the way and we bought some ice creams. Not exactlyh on the chemo recovery diet but very enjoyable. Lovely picturesque little store.

Very tired in the afternoon but had a swim and finished off with watching a movie, First Knight, very light and entertaining. All in all a lovely day.

Survive and thrive with enjoyment

Linda

Epirubicin effects

Live your life so that the fear of death can never enter your heart. When you arise in the morning, give thanks for the morning light. Give thanks for your life and strength. Give thanks for your food and for the joy of living. And if perchance you see no reason for giving thanks, rest assured the fault is in yourself.

Chief Tecumseh, Shawnee Indian Chief

The big dipper of life took a bit of a plunge after the chemo the day before yesterday. Started chemo around 3pm and finished around 5pm. By 6pm I was feeling pretty ordinary. Soon after the gastritis flared up with severe nausea and pain. Meantime bowel cramps had started with major evacuations. Had already taken Prilosec to reduce acid in stomach and when symptoms started took Zofran (anti nausea), antacid and Percocet (for pain). After about an hour got a little relief but was still in a lot of pain so took a second Percocet. Half an hour later I was pain free and feeling drunk (Percocet is an opioid). What a relief. Unable to eat but slept well.

Yesterday morning managed an apple for breakfast and then slept most of the morning. Had some soup during the afternoon but didn't feel well enough to get up out of bed. Managed a bit of pasta in the evening and went to sleep at about 8:30pm

Much improved this morning but still a bit nauseous, weak and tired. Managed a 15 minute walk, a short lie down to recover and then made some breakfast of granola, fruit and yoghurt. Then back to bed. Managed to get my supplements down (quite a few tablets :). Now building up to a swim in the pool. Feel like I need to make a big effort with the exercise regime. It all seems to be two steps forward and one step back, I just don't want to go two steps back.

Finished reading Lance Armstong's first book "It's not about the Bike" which was quite good. Also checked on a blog from a fellow patient and got an email from another fellow patient we met at the Gawler Foundation. Neither are travelling very well. They, and their carers, are showing great courage under very difficult circumstances. Makes me grateful that my journey is not as onerous. Also makes me think about the need not just for progress in cancer cures but in supportive measures (I'm talking medical here, not carer support) while patients are going through their treatment, it can be extremely harrowing.

One of the problems, I believe, is that there are huge profits being made on conventional chemotherapy drugs and the drugs that counter the side effects of the chemo drugs. There is very little incentive to reduce the side effects of the drugs directly as the sale of, for example, anti emetics (nausea) medication gives astronomical profits. There is very little incentive to find effective anti cancer drugs that have little or no side effects due to the greed of the big pharmaceutical companies. Unfortunately they have a lot of political lobby power.

My order of fluids, syringes and needles has arrived so I am set for the rest of our stay in the US.
I only have one more repeat of the chemo I had a couple of days ago, the other stuff I will be taking shouldn't cause as much of a problem. Still have a lot of muscle wasting and still losing hair, not much left now, just some wispy bits. Oh well, monor really compared to what might have been.


Hope to be up and about a bit more tomorrow.

Survive and thrive!

Linda

Chemo plus green juice - yum

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.


Mother Teresa
Catholic Nun, Missionary

Had a good day today despite a bad nights sleep. Woke up a bit tired so only managed a half hour walk. It was very pleasant if a bit arduous (relatively speaking of course). There was very heavy rain last night with lots of lightening and thunder. Paula thinks there was at least an inch. Actually had puddles on the track.

Spent the rest of the morning catching up on e-mails and sorting out some records on the computer. I wrote a general e-mail with photos but wanted to write a few individual ones as well to answer some specific questions. I had planned on doing chemo this morning but postponed to the afternoon.

Got an email back from Ursula advising not to put the vitamin C injection in with the others. Spent some hours in the afternoon preparing and administering my various potions. It takes quite a lot of preparation to get ready. Thank goodness for my injection port, makes it so much easier to do intravenous administrations. Had Zofran (for nausea) Epirubicin, Gemzar, Factor AF2 with the usual flushing before and after and priming the port with heparin to avoid clots.
no nasty side effects so far. Usually don't feel sick till the next day. Something to look forward to :). Glen made me a green juice so I felt like that was helping with side effects.

Managed 12 laps of the pool after the chemo so feel very pleased with myself. Didn't get out to swim till about 5 pm as the pool had some work done to it yesterday and could not be used for 24 hours.

Another lovely day in the desert. The Arizona Barrel Cactus is flowering (top picture).


Surviving and thriving

Linda

Night Sky

"Be glad of life, because it gives you the chance to love and to work and to play and to look up at the stars."

Henry Van Dyke



It's been a very busy day. Went for a 40 minute walk this morning. Glen had left before me and seen a coyote quite close by. We have seen the scats along the track but this is the first sighting.

Spent most of the morning sorting through my medicines, syringes, needles, fluid bags etc. Found a few drugs missing that I should have brought over from Germany. Found a couple of items on the packing list that I have no idea what they are or where they are. I am also behind schedule for my chemo treatment so have made a revised therapy plan. Then I e-mailed Germany for clarification and the go ahaed for the new plan. Meantime I have ordered more needles, syringes and fluids and gave myself a Thymoject injection this afternoon with no nasty side effects so far. I usually feel unwell for 2 or 3 hours after it but so far so good.

Managed a bit of swimming in the pool before lunch. Up to 10 laps of the 10 meter pool, trying to increase by 2 laps every day. I had just sat down to lunch on the patio when I saw the coyote across the other side of the wash. Looked in good condition, no ribs or hip bones sticking out and the coat wasn't mangy. Very exiting.

Last night we were all lying on the chaises outside looking up at the sky, the stars were amazing. The lack of humidity here and the lack of lights as we are away from the nearest town ensures a beautiful clear view. Saw a big shooting star and a few satellites. Then we saw a much bigger light moving across the sky about the same rate as the satellites but in a diffferent trajectory. Found out today that it was the International Space Station with the shuttle attached. Wow! Then tonight we saw them again, now separated but still reasonably close together. They were only visible for 5 minutes last night and 2 minutes tonight. What luck that we were out there looking at just the rigtht time. We knew what time they were due tonight but there was a huge storm coming over and we thought it might be too cloudy but we were quite lucky again.


There was a spectacular sunset tonight. We went out on the quads to get a better view from up high. It was Glen's first go on one and she went really well. I was on the back with Paula but also had a go at driving on the way back. Lots of fun. Saw a lovely sunset over Fountain Hills and a lightening show in the opposite direction.

Surviving and thriving

Linda

Back in Arizona

"The future belongs to those
who believe in the beauty of their dreams."

Eleanor Roosevelt








Wow, can't believe it is the 7th September and I haven't made an entry since the 19th August - been too sick. Here is a summary of what has happened in that time.

On August 19 we managed to get a taxi to Gmund railway station to pick up my cousin, Joke, and take her to her guesthouse. We then had a lovely lunch at a restaurant with an outdoor section on the lake. It was a pretty hot day. We walked back to our guest house, Heimgarten, where Glen and I were staying but I started to feel pretty sick on the way and my right leg was hurting. Feeling unwell was from the vaccine I had in the morning and I assumed the pain in the upper right leg and groin was somehow related to the trans arterial chemo embolisation I had in Frankfurt on August 6.

I was pretty sick for the next few days. Managed to have a good chat with Joke one afternoon and we did getto go out to a nice italian restaurant for dinner on the last night before she left on 23 August. We also had quite a bit of organising to do to make sure that all the medications I was taking with me were there and in correct amounts etc. It seems to always be a bit stressful at the end of the clinic stay to get it all organised. Glen went and bought a new suitcase for the medication as there was quite a lot and it is easier to organise getting it all through customs if it is in a separate bag with all the paper work included.

We flew to New York via London on August 24 and it was a very long day. We didn't fly out of Munich till 5:30 pm and arrived in New York the equivalent of 6 am the next morning although with the time difference it was actually about 11:30 pm in New York. The hotel room was fine except the bar fridge didn't work so I had to store some medications in the hotels main fridge downstairs. The hotel was located close to the East River but in a commercial area full of garages and warehouses. No room service or restaurant in the hotel - bummer. It was not very restful for me as I had to try and find places for breakfast and then get enough food to last me through lunch and dinner. It was also pretty hot and we had to walk a long way to find any place that sold food. Glen went to the Met and bought dinner back the second night. I was more tired when we left New York than was planned. I also had a head cold by then and still had not really recovered from my treatment at the clinic. I felt like crap.

The flight to Phoenix was pretty bad. It is about a 5 hour flight and we were lucky to have 3 seats but even lying down for a couple of hours I found it very difficult. By the time we got to Phoenix I was quite sick. It was Monday and it was a relief to see my sister at the airport and I pretty well spent the next few days either in or on the bed. My energy levels were appalling and I had severe nasal congestion and some nausea.

Meantime the pain in my leg was pretty persistent. I wanted to get some blood tests done to check liver function and see what my red and white blood cells were doing as I seemed not to be getting any better energy wise and had a general feeling of malaise. We went to see Dr Gottfried, who I had seen last time we were in Phoenix and he referred me for an ultrasound of the arteries of my right leg. The scary diagnosis there was a complete blockage of the Femoris Profunda artery. This artery supplies the femur, the knee, the hip and some of the large muscles of the thigh. The treatment would normally include blood thinners but there was a concern about potential bleeding in the liver where I had treatment for the tumours. In the end I was given pain relief tablets and we made an appointment with a vascular surgeon. The disturbing news about this problem was that 25% of patients with this require limb amputation. Yikes!

Then on Wednesday afternoon at about 2 pm I started to get some upper abdominal pain. I took some antacids and antispasmodics but it just got worse. I had used up my last two antacids so I emailed Paula to see if she could pick up some more on the way home. By this stage I was in a lot of pain and vomited some blood. This may not have been from my stomach as I was bleeding a lot from my nose so I may have swallowed some and then vomited it up. The nasal ulceration has been a problem since I started chemo in May. By the time my sister got home I was in agony and Paula and Glen took me to emergency at a hospital in Scottsdale. It took about another hour before I got the morphine and started to feel ok. By then I had been in severe pain for about 3 1/2 hours. The doctors were not sure if they were dealing with a gall bladder problem or a stomach problem. There was also the issue of my leg pain.

I spent 2 nights in the hospital and had ultrasounds, doppler, CT scans and an endoscope. I had intravenous antibiotics and drugs to reduce acid formation in the stomach. The conclusion, after several possibilities were discussed, was a case of gastritis. Other discoveries were that the Femoris profunda was not in fact blocked but that the femoral arteries on both sides had soft plaque causing narrowing of 40% and 50%. One of the drugs I am on has a side effect of creating high cholesterol so that could have been a contributing factor. The CT scan of the liver was very encouraging as it was reported as unremarkable - no sign of active or dead tumours!!!!!

By Friday I was feeling somewhat better and really wanted to get out of the hospital. It looked like none of the problems were related to my cancer or cancer treatment so it was going to be possible to claim it on travel insurance. A great relief as the first night with only one ultrasound and some drugs cost US$8,500. So the total bill was probably going to be over $30,000.

Since coming home from hospital I have been feeling much better. My energy levels are pretty good. Managing a half hour walk in the mornings and have been swimming during the day. the pool is finally finished so that will be great for my rehab. I am hoping to get my fitness levels up and with the finding of the plaque in my arteries, exercise has become even more important. I suspect I may have had a bacterial infection somewhere and that the intravenous antibiotics took care of that. Plus the head cold is finally abating so that would help with my feeling better as well.

I have postponed my chemotherapy which was due on the 3rd September and will consider doing it in a couple of days if I continue to do well. It will of course set me back again a bit but I am hoping it will only be the Epirubicin which will be a problem.

Meantime nature is as beautiful as ever - some of the cactii are flowering, the squirrels are visiting along with some migrating Rufous Hummingbirds. There is a lot of activity around the feeders as they sort out who gets prime position.

So surviving and thriving again after a short lapse in the thriving department.

Linda