Living For Now

I am a big supporter for living for now. Sometimes we are so focused in living for the future - saving for retirement, a rainy day, or whatever. We plan our future for ourselves and our family members - education, get a good job, etc. Our culture tells us this. It seems like the biggest reason we have jobs is to save for retirement.

However once you have cancer a time or two, you start questioning this saving for the future business. Why are we doing this if we may not be here to use it? We save up to 10% of our salaries or more.... And cancer? It could take us any time.

When I was diagnosed with breast cancer, it was my second cancer and I really started questioning all this.... Today I read an article about a British news presenter, Victoria Derbyshire, decided to start living for now after her breast cancer diagnosis and treatment. She stopped saving for retirement and got rid of her mortgage protection insurance.

This is another example of how a cancer diagnosis knocks you off your feet. People may wonder why we get so stressed at a cancer diagnosis. Yes it can kill us so we may not want to plan for the future any more because we might not be there for whatever we have saved. So we like to live for now.

Wait A Minute, Back Up Please!

A new study shows "How a Chemo Drug Can Help Cancer Spread from the Breast to the Lungs". Really? How does that work? Why are they telling me now instead of before chemo?

"Researchers at The Ohio State University studied the cascade of events that lead to metastatic cancer and found clues to why it happens, opening up the possibility of one day interfering with the medication's downsides while preserving its cancer-fighting properties in breast tissue.

The front-line chemotherapy drug paclitaxel sets off a variety of molecular-level changes that allow breast cancer cells to escape from the tumor. At the same time, it creates an environment in the lung that is more hospitable to the cancer cells, facilitating the spread of the disease, the researchers found in a mouse model of breast cancer."

I know chemo drugs are strong which is why they are used to kill cancer cells. But this is just really bad. Why? Because the 'other name for paclitaxel is Taxol. Which I had. Thanks for that push back on the cancer roller coaster. 

And then there is this little disclaimer at the bottom that's supposed to make us feel better.

"She said it's important to recognize that the cancer cells in the study's mouse model are very aggressive and that it would be interesting to test whether paclitaxel also enhances the escape of cancer cells at earlier stages in cancer progression."

What Does Your Pain Medication Hide?

Last weekend I was a total idiot and forgot to change my pain patch for so long my RA was causing me agony. But I also felt pain in other places that I did not expect. My RA pain was definitely the worst of all.

What this little spurt of idiocy tells me that my pain meds, especially my pain patch, are working and do take care of my pain. This is a very nice thing to know. I am not living in pain (most of the time) because of them.

But then what concerns me is what are my pains caused by. Okay, I am no idiot but I do know that what I felt in my hands and feet is caused by my RA. But then I have pain in other places that I didn't expect. These now need to be explored (not here) but with my doctors to see what causes them - in other words, are they something to worry about.

Pain is your body telling you something is wrong. I just need to know what's wrong and hiding behind my pain medication. Damn.

Breast Cancer Treatment Benefits

Recently it was announced in a draft proposal that the UK's NHS would not cover faslodex to treat estrogen positive metastatic breast cancer. While this may be disappointing to some, at this point I agree with the decision.

The reason given for the decision is:

"While NICE [National Institute for Health and Care] Excellence acknowledged that it can stall tumour growth by up to three months compared to aromatase inhibitors, it said early evidence isn’t strong enough to show that the drug extends survival."

What is the point of spending millions of dollars on patient medication if it does not extend survival? This is a real problem with many new medications where they are shown to treat an ailment but the question often comes down to the length of extended survival. 

If you had metastasized cancer how much money would you pay and side effects would you endure to simply live a few weeks longer? I think we all want to life as long as possible but the costs to be endured can be too high. If you get side effects such as diarrhea where you are forced liquids and electrolytes to keep you alive, is that worth it? Bed ridden in extreme pain? Just because this stupid pill is slowing your tumor growth - and might be keeping you alive longer.

Again, we get to the discussion of quality of life. In my opinion that is one of the most important pieces of medical care. If you are suffering, do you want to be alive? Not me. If you are given so many pain medications that you don't know which way is up because of the other medications you are on, is there quality of life?

I'll be making my own decisions focusing on my quality life thanks.

So I am backing NICE here in this decision to hold off on approval of Faslodex, this fancy new drug that may or may not prolong life.

Why Did I Feel So Bad?

I have good days and bad days. Little changes, like a poor night's sleep, can cause me problems for a few days. I realize that. Forgetting medication can really mess me up. Last winter I had a horrible cold and forgot to take my Lyrica for a few days. Then I started feeling even worse - the Lyrica hangover.... But then I figured it out and went back on it and felt better instantly.

I have been feeling bad off and on all week but mostly with in reason. Until yesterday. I woke up achy and sore. I didn't sleep well because I couldn't get comfortable. I had a throbbing headache. My hands were really sore on Friday - I couldn't knit because they hurt so much. By 9am yesterday, I decided I was spending the day in bed.

Then I found out my brother, his girlfriend and dog were coming for the weekend so I had to motivate. My brother has a standing invitation to come visit any time with or without kids, dog, girlfriend. Our guest room, a/k/a our finished basement is where people stay with a dog free overflow upstairs in a guestroom and the pull out couch in the livingroom. Before that text message, the basement was a disaster. All my knitting and weaving stuff was everywhere in piles, being sorted, finished, etc. So I had to motivate.

While motivating and cleaning, I realized that all my problems were pain. My pain is primarily controlled by a 7 day pain patch that I change weekly. I realized I had no idea when I had last changed my pain patch which probably means it was more than a week. I never remember what day to change it. I try to change it on the same day I fill our 7 day pill boxes but when I change filling our pill boxes because of some scheduling issue, that screws it up.

And I have no brain. I can't remember anything....

All I know is that I had so much pain yesterday that even after I put my patch on it took several hours to recover. The power of one little pain patch.

What did surprise me is the level of pain that I had.... I definitely need to talk to my doctors about that one.

I've Been Sliding

The road to hell is paved with good intentions. I have been lazy this summer and taking it easy - in terms of not taking care of myself as much as I should. Why not? Summer time is nice weather. There is no snow and ice to trip me up. I usually feel better during the summer. But just because I feel better doesn't mean I can stop taking care of myself.

With every doctor appointment, there are the reminders to eat healthy, blah, blah, blah. I usually reinforce my intentions. 

But I have been sliding, I have been lazy and haven't been taking care of myself. I have been pushing myself too much and not resting enough. I haven't been eating right - wine and candy have been part of my diet. And they should be. Never mind fried clams and french fries. (But they are my favorite and I only eat them in the summer.)

So now that fall is almost here (and the temperature has been in the 40s the past few nights) its time to clean up my act. First of all, I have tons of tomatoes in my garden that I need to eat. I should start eating more of them before the first frost. There are also some green beans out there and more zucchini, cucumbers, and peppers. So lots of veggies just waiting for me.

Second of all, all these sugars (wine and candy) need to stop. I need to stop them and maybe I'll even lose some weight (very helpful). I could stop carbs all together but since I like bread too much). 

So I will reinforce my intentions and try to do better. It would be nice to be healthy person and have more leeway in my diet.

An Educational Conversation

I had an interesting conversation. I am doing some research on hospices and palliative care (for someone else, not me). I met with a social worker who used to work for a hospice. She was very helpful.

I had no idea how hospice care worked, especially at home. Basically hospice care includes palliative care. If you have hospice care at home everything comes to you. Doctors, nurses, social workers, and more. It lasts for up to six months. If, at the end of the six  months you are still alive, you can be recertified for more hospice time (I think) unless you are too healthy and stable and then its back to reality.

Hospice care is also paid by medicare or medicaid unless you have long term care insurance. So think of it as free care when you are sickest and it all shows up at your house. If you are interested in hospice, its best to start research as soon as possible.

I found it very interesting how the process works. And learned that basically if you have been given less than six months to live, sign right up.

So from what I learned, when I get to that point in life (face it we are all going to get to that point in our lives), I will sign up for hospice.