Blogging for money?

Now there are lots of people who are paid to blog by companies who make it part of their jobs or hire them as freelancers to blog regularly. That is a completely different issue. What I mean by blogging for money is the area of people who have personal blogs and go one of two different routes: One option is to put google ads on your blog and you can actually have little checks sent to you. Fine. You are not putting your readers under any obligation to pay money for something you are getting for free. But you can actually earn some cash this way. I think the downside is you can't decide which ads are shown on your blog at any given time.

Then there are other people who blatantly ask for donations to support their blog and help pay for their medical expenses. I know of several blogs that do this. I think I have a problem with this. Someone has a blog to write about their life/medical crap, etc. Most blogs are hosted for free. (I have never paid a sent for mine.) Then you are (repeatedly) asked to click the donate button and send money to support their blog and medical bills. Hmmm....

I feel a disconnect here. I don't know these people other than the fact that I have stumbled on their blogs some how. They want me to send money to help them out? I make donations to charities that I know are legit. I am not saying their needs aren't legit but there must be another way other than asking near strangers for money. For a blog reader, it makes me uneasy. Am I not supposed to read their blog because they want donations? Should I pay to read? I don't know. I just know whenever I see another donation request, I skip reading the blog for the day.

Today is another day but I slept for eight uninterrupted hours last night. This is the first time in several weeks this has happened. I do feel better. But my back still hurts...(so I can whine about it). Today is another very busy day. Work, work, more work, and perhaps a walk at the end....

Combining treatments

I have finally figured out a way I can combine treatments. Cancer gives me tamoxifen which gives me hot flashes (nice in January but not so nice in July). Back pain gives me pain. Both of which are solved but nice big ice packs on my back. Five minutes later, pain is starting to lessen and I need a sweater. Two for the price of one! And it didn't require another doctor visit to figure it out.

Even though my back hurt last night, I finally got a decent night's sleep (thank you little white pills) and feel better today. Yesterday morning I thought I had a nice matching pair of bags under my eyes. Today I think will be better - which is good because I am busy. Work, followed by more work, followed by a walk, followed by a 'healthy' dinner with a friend. I put 'healthy' in quotes because although it will contain all the essential food groups - vegetables, dairy, wine, etc - nachos and pinot grigio are probably not on any nutritionist's list of acceptable meals. But we get one small order of nachos and split it. And sometimes don't eat them all.

But now I will be late if I don't get off the darn computer.

Pain

I did some research and I am not sure it was a good idea.

First I heard about this news story that swearing makes pain more bearable. Not bad, every one start swearing away instead of saying 'ouch' and 'ow'. How polite.

Then I started following the links in the article. There is a very optimistic one that says a genetic cure for pain. But if you watch the video, it says tests on humans are YEARS away. (No I don't have advanced cancer as they cite in the video.)

Another enlightening article gives pain facts and says 'scientists don't understand pain'. Wow! Great news! They can't cure cancer either. It also has my favorite: Chronic pain shrinks people's brains. So between chemo brain and pain, am I getting dumber? If I lose the equivalent of a pea size piece of my brain every year? How long do I have before I lose my mind? (How many peas in a skull?) If I have to wait years for the genetic cure for pain, will I have a brain left?

Do I feel reassured after doing my research? Not really. I think I'll go back to reading trashy novels, watching cooking shows, and wasting time on Facebook.

Am I prepared?

The question of the day is: Am I prepared? A couple of weeks ago my boss at my new job recommended me to a friend of his to do work for his company as well. We went back and forth by phone and on email and negotiated a deal. I will do a marketing/branding plan for them. I have done some prep work but today is the big deal - go down and meet with them for two hours this afternoon so I can write the plan for them. I have never met these people. Am I biting off more than I can chew? I don't know.

I do know working for people who regularly yell at you and then dealing with medical crap which is overwhelming can be bad for self confidence. I have chemo brain (or claim to) and can I remember stuff long enough to write a marketing plan? My big fear in my new jobs is that what if I am looked at like I am an idiot because I can't remember if I asked something already. I just take lots of notes and reread them...

- Do I have everything I need for the meeting? I don't even know how many people I will be meeting with. Probably around 10-15 but I am not sure.

- What they hell will we talk about for two hours? Will I remember everything? I will take lots of notes.

- What do I wear? I have no idea. Its not an interview. We already have an agreement but I need to make a good first impression. (You only have one chance to make a first impression... blah, blah, blah)

- Can I get out of there before rush hour? The meeting is scheduled from 2-4 and is south of Boston which means lots of traffic if we run late.

In the meantime, my back hurt a lot last night but I bought a big reusable cold pack which comes with a cloth bag and stretchy straps so that I could strap it on and walk around with ice on my back. It was great. But my back still hurt. I took a pain pill and that helped. But Walter is out of town this week and I never sleep well when he is not here. And it doesn't help when the cat thinks that 5 am is the perfect time to demand food. (Just because the sun is up, doesn't mean I am awake. And you could have eaten the rest of the food in your dish before you woke me up!) We will have to renegotiate this one this week.

However I have a very busy week planned. Provided I don't over schedule myself...

A bucket list

In case you don't know, a bucket list is the list of things that you want to do before you kick the bucket. There was a relatively good movie with the same title a couple of years ago with Morgan Freeman and Jack Nicholson by the same title - worth watching but be aware that it doesn't have a happy ending. (I actually think they show chemo quite accurately in it).

Anyway, I think the term bucket list has a connotation that you have a short period of time ahead of you. Then a Facebook friend said 'My theory is if I just keep expanding and adding to the list, then I will never complete it and have no reason to die!' I like her theory and think perhaps I need to get a little organized about what I want to do so I might actually do them. I have already traveled a lot but there are some places I want to go to:

- Iceland on my 50th birthday. Why? Why not? Its there, I have never been and I want to go.

- Costa del Sol in Spain again. I was there 30 years ago and think I will appreciate it more now as an adult. But I also want a side trip back to Madrid to see the Prado and get some more of the best paella I have ever eaten.

- Walking tour of Scotland. But in the summer. Not the winter. Ditto for the Alps.

- Skating on the canals in the Netherlands. I used to skate. I loved Hans Brinker as a child. I want to skate on the canals.

- Hiking in Hawaii. Volcanoes, snow, and a tropical paradise! I want to go.

- Learn how to make pie crust. Don't ask. I can't make pie crust. I have made lots of other things in my life including souffles, roasts, mousse, etc. But I can't make basic pie crust. I make shoe leather.

That's enough for now. Because as my friend said if you never complete it, you will have no reason to die.

I think the key thing about bucket lists is you have to compile them for yourself. Last year some well meaning person asked me if my vacation was something that was on my bucket list. This upset me - did she think I was about to drop dead or something? Since I am in control with this year, it is my decision and I will just keep adding to it.

So now off for my walk with my husband. Then breakfast and take him to the airport this afternoon for a business trip (his, not mine) and out for dinner with a friend.

This working business is driving me crazy.

I have figured out I am working too much and it is interfering with my walks, book reading, gardening, and other fun time. One job has me working 5 days a week, at lest a couple of hours, then I have my other job that I go to three days a week for five hours each, and then two contract jobs that all of a sudden are both keeping me busy. Finally, I have a new job I have to prep for a big meeting on Monday that should turn into a consistent contract job. What was I thinking? Too much work, and I don't get to have any fun.

It seems I am experiencing a lull so to speak between doctor appointments. My next appointment was to be on Tuesday for my therapist but she canceled because she has to go to a funeral. My back doctor isn't until September (unless it gets fit in) so I only have my radiation oncologist in mid-august some time. So I guess in all this spare time, I can do more work? Hmmm... My daily walks have been lacking and my garden has weeds. I will stick with them.

In examining my calendar, I decided to start color coding things. I leave all the work crap in white so it isn't overwhelming. Medical crap is in red so I can't forget it. But vacations or time away, is in green. I have lots of green planned on my calendar in the next three months: a weekend on the beach in RI, a weekend on Cape Cod, a weekend camping in New York, and week in a cottage on the ocean in Maine, and a long weekend to my college reunion in WI. All that between now and the beginning of October.

I'll just take my pain meds and travel with them. My back doesn't like travel. And I can't carry things over 20 lbs - wheeled luggage here I come! I think I'll also have to get better at the look pathetic at the luggage that needs to go into the overhead bin when I fly to WI by myself. The rest of the time Walter knows he gets to carry everything.

Speaking of travel, Walter is going to San Diego tomorrow for the week. I will be home by myself so I am planning nights out with my friends to fill my time. I'll also have to give kitty his shots. I have now done it three times and its been okay. But the needle isn't going into me so I think I can handle it.

Its a beautiful day. We are off for a walk and then to the local diner for a breakfast of grease and fat (well maybe slightly healthy, they have an awesome side of fruit...)

My doctor needs new writers

So I went for my nasty adventure on Monday where they stuck a few 'you might feel a little pain for a second' needles in my back which, if successful, was to be followed by a nastier procedure which you get to sleep through but promises semi permanent results. I filled in my pain diary and faxed it to my doctor with a nice note on Tuesday.

They called yesterday. He doesn't want me to have the next treatment but wants me to come back and see him. His first available appointment is SEPTEMBER 4. The nurse said to me that's only six weeks (not sure where she learned to count but on my calendar that's 8 weeks) but said to call regularly to see if they have cancellations which happens all the time. The last time I wanted to see him, I had to wait a month for an appointment but someone canceled so I got in a week later so there is hope, but I am still crabby about it.

This also means that apparently he didn't like the results of the diagnostic procedure on Monday... Why? Maybe because of relieving pain, it increased my pain temporarily so I had to sit down? When I saw him before the nasty procedure, he told me that even after we deal with my lower back we still have the sacroiliac joints to deal with. I don't know. Are we skipping the lower back and moving on to the sacroiliac joints? Or are we trying something else for the lower back first? I do know I don't want to wait two months so you can be sure I will be calling regularly. Just call me the not so patient patient. Particularly when back pain makes me cranky...

It comes with a lifetime guarantee!

I was listening to the radio as I drove to meet friends for dinner last night. There was an ad that came on for mortuary stones - with a life time guarantee! But who's life? Considering you buy them for when you die? I thought this was a well 'doh' marketing moment. But my husband did point out that they wouldn't get a lot of complaints that way if all their customers were dead. So maybe its smart marketing after all.

I had dinner with some friends who we all went through cancer treatment about the same time. We did talk about the importance of lifetime guarantees, life insurance, saving for retirement, and all that long term stuff that gets skewed with cancer. Why am I saving for money to live on in forty years if my chances are being here in 40 years are somewhat less than most others? But then we all decided that Oprah gave the best advice a few years ago: save for retirement and die broke. We decided that living the best life possible is the best way to do it. Someone's advice as 'live every day like it was Christmas'. I think there are a bunch of country music songs on the topic "Live Like You Were Dying", etc. Anyway, enough morbid talk.

Then I walked out of the restaurant and in the parking lot were four men talking. I realized I worked with three of them for several years until a layoff in 2002 and hadn't seen any of them since. I had head through mutual friends on how some of them were doing so I know two are now married, who works for whom, etc. But did I want to rush over and say hello? Not really. Too much time had passed. Too much water under the bridge. And did I really want to go through how am I doing, blah, blah, blah? The last former co-worker I had told about my health issues, I have not heard from since. I am not prepared for others to say 'oh, that's too bad, we'll do lunch sometime' and drop off the planet. So I turned with my friends and we walked to our cars and drove off.

My question for myself is if there hadn't been cancer in my life in the intervening years, would I have walked over and said hello? I am not sure. Cancer changes everything.

A very nice offer

Yesterday someone posted a very nice offer on my blog. I really don't think I am going to take them up on it. In fact I deleted it to preserve their privacy. Basically, this person has done all sorts of research and found a surgery free way to cure breast cancer. If I send them my email they will send me links so they can prove this to me. Then if I send them $2500, they will give me the cure. I really don't have $2500 to spare, nor do I particularly want to share my email address with someone of this caliber so I have declined. (But if there is anyone out there who wishes to reply to this person and get spammed and ripped off, feel free to let me know and I will be sure to send you their offer.)

It is very sad that there are people like this out there. A friend of mine had a recurrence and technically is now stage IV. She was talking about being approached by people like this. The woman who runs our support group says that they will now come out of the woodwork. People who prey on sick people are right up their with child molesters as far as I am concerned. If you are sick, and not likely to get better, you deserve special protections for this kind of predator - because that's exactly what they are.

Anyway, life goes on. I faxed my pain log to the doctor yesterday but didn't hear back. I'll wait until tomorrow to call to see what's next on the agenda. I am also feeling a tiny bit overscheduled. Today: 745 cat to vet, 8-10 work at community ed, 1030-315 work at new job, 330-430 walk, 430-5 farmers market, 515 pick up cat, 630 dinner with friends.... No time to do the other work I need to do from home. Grrr... Oh, and my back hurts.

Nasty

Well, that was nasty. Horrible. Painful. Awful. Probably one of the worst medical procedures I have experienced. The literature does say 'We will numb your skin first with a small needle, which will sting just a little bit.' THAT WAS A LIE. They stuck me many times and the needle burned. Then came the painful part 'which would only hurt for 2 seconds and then take effect' when they stuck the numbing stuff down by my spine. Um, what about the part where the pain radiates to my hip? They didn't mention that part. At the end the doctor said 'next time it will be better, we will sedate you.'

When we came home, they said keep a pain log for five hours and do normal activities. So after a little computer work, we went out for a walk. At the end of 15 minutes I was in so much pain in my hip and leg, I had to sit down and then walked slowly home. Then I called the on call pain doctor who said 'this isn't an abnormal reaction, ice the hell out of it and take anti-inflammatories'. He also said to call my doctor in the AM if it wasn't better. It did get better with ice and inflammatories.

Okay, it was awful. I am done whining (for now). But I think it was helpful except when I tried to go for a walk. But perhaps now I will have the other procedure (under sedation). I will see what they say.

Today, I am off on an over scheduled day. But when I go for a walk this afternoon, Walter will go with me in case of another eventful walk.

Kitty news update: he is lazing around, some days better than others. He goes back to the vet tomorrow to see if they can determine his insulin levels.

Book report: ChemoBrain by Eileen Clegg

But first a little side note on this story of a mother who refused treatment for her then six year old autistic son who was diagnosed with non-Hodgkins lymphoma with a very high survival rate. She never took him to the doctor. Finally, she lost custody of him and he went to live with his father but by then it was too late and he had leukemia and died at age nine. She has been arrested on all sorts of charges and will face some jail time.

I am all for people getting the treatment they want to cure them. I view a doctors recommendations as suggestions and before I accept them I make sure I understand them and their impact on my body. Its my body, my choices. But if you are caring for a six year old who is autistic and not capable of making the decisions you must make the right decisions for him. If he is too young to make the decisions about his body, shouldn't you follow advice that will allow him to grow up and be able to make those decisions? Is that too much to ask?

No on to my book report.I had heard of Eileen Clegg's book on chemobrain some months ago. But then my chemo brain prevented me from remembering to purchase it, then once purchased, I kept forgetting to read it. Finally this weekend, I made it through it. Its not that the book is badly written, I found it a little technical but fairly easy to follow.

I have no medical training (merely am a professional patient) and this is what I take from it: Chemotherapy destroys fast growing cells. Brain cells are also fast growing so during chemo, new cells don't grow to replace older ones which are dying off. Those missing cells are never replaced. Hence, memory gaps, chemobrain, or cognitive deficit.

The next point is that cognitive deficit can occur as the result of stress (such as cancer diagnosis and treatment), natural aging (such as menopause - including chemo induced menopause), and other natural causes. So if a woman is diagnosed with breast cancer (stress), receives treatment (brain cells die off and menopause is induced), which factor causes the cognitive deficit? No one is rushing to call it chemo brain because it apparently occur for other reasons.

Finally, there have been small and inconclusive studies on this. The problem is a patient can have stress, chemo and menopause simultaneously so how do you separate which one is which? I am not sure that I do. I think I just claim chemo brain.

But if you want to read it for your self, please do. She also has sections on the affect of chemo brain on children and young adults. I do recommend the book.

One side note, when I purchased this book in the store, the cashier looked at the title and said something like 'hmmm Chemo brain, sounds like some weird science fiction thing.' I replied 'I only wish it was'.

So now I am through with that I am off for my nasty procedure today that I will just not think about all day. I was given the option at work to take the morning off or to work. I said 'sit around at home and stress about it or go into work and be distracted?' Thanks but I'll take distracted. See you at 8.

I Should Never Read This Stuff

When they tell you you need a procedure, they give you a little sheet of paper with questions and answers to take home and read. I most prudently do this the day before. Tomorrow, I am going to have a diagnostic facet block which means they will stick six needles in my back using an x-ray machine to guide them. 'This is a diagnostic block because you will either feel better, meaning these joints are responsible for your pain, or you won't feel better, meaning that these joints are not generating your pain and we must look elsewhere for causes. You will be sent home with a pain diary to record how you are feeling after the block. Remember this is only TEMPORARY relief that may last a few hours to a few days. If it appears as if you obtained adequate relief from this block, we will consider the next step, which is radiofrequency ablation of the same nerves.'

They next discuss the icky parts - what are the risks and what they actually do during the procedure. Then after the procedure: "you will be taken to the recovery room in a wheelchair and discharged home shortly thereafter. It is very important for you to fill out the pain diary as accurately as you can. We want to know how your USUAL pains responded to the blocks. You are encouraged to be as active as you can be, really 'test' the back. Remember, we are not really masking anything so you will not hurt yourself. You may have some local tenderness from the needles, which ice may help relieve. Also, take your normal pain medicines.'

Hmmm... so they stick six needles in my back and then I need to go home and see if my back hurts more or less. I'm not sure I like the wheelchair part either. The other injections did not involve wheelchairs (why am I thinking of "Curious George Goes to the Hospital" all of a sudden - where he gets involved in wheelchairs on ramps?)Anyway, now I am sufficiently grossed out and stressed out.

Today my back hurts. Yesterday my back really hurt. I can't take any of my back stuff this weekend so it hurts all the time. In view of that fact, I made an executive decision yesterday that if my back was going to hurt I could sit at home and do nothing and it would hurt, or we could go out and have fun and celebrate the holiday and it would hurt. We opted for plan B and went and played mini golf, games in the arcade, and had ice cream. (Ice cream is important in stress relief and I haven't had any in a long time.) Then my back really hurt so I iced it for most of the afternoon. This morning I woke up and my back hurts. We were going to get up and go to the beach this morning but decided against it for several reasons, the big one being the state of my back. (But also it would be high tide at the wrong time and really crowded because its July 4th weekend and the first nice weekend in months.)

Tomorrow I will go to work in the morning and then have my fun adventure. Then I can at least start taking my pain meds. I'll just live in my whiney state for another day.

More thoughts on counting

After yesterday's realization I had hit 750 blog posts, I started thinking about things you count - there are ones you should and ones you shouldn't.

You should count birthdays. Age is an achievement. The American Cancer Society has started a movement for more birthdays for everyone. They will sponsor your birthday. I am not sure I need a sponsor for my birthday but will happily celebrate it again this year. We will be away in Maine together for a week - our birthdays are five days apart so we always plan a vacation where we get to go do what we want.

You should count anniversaries. My husband and I just celebrated our fourth wedding anniversary. That's four years of living together happily, but unfortunately stupid medical problems continuously - but those shouldn't be counted.

Some people also count milestones in their lives: years since cancer diagnosis, or since life saving stem cell transplant, or other medical milestones. I am not so sure how I am supposed to count years since cancer diagnosis. I almost got to 26 and then do I start over two years ago at my next diagnosis? Or do I get to have two counts - one is two and one is 28 next month? (So confusing and then chemo brain kicks in and I can't figure it out...)

But there are things you shouldn't count. Like the number of doctor appointments in a year. Last year I had 79 doctor appointments. This year so far I have had 30... Which means I am on track for 60 this year. I was hoping for ten. If you count the wrong things, that would be things which are beyond your control, you can too easily set yourself up for disappointment.

There are many things in life to count but that shouldn't be counted. The important thing is to figure out which ones you should count, and keep track of them.

Yesterday I got together with a friend for lunch and we had Ethiopian food. I have never had Ethiopian food - it was yummy! I highly recommend it. We both decided that we will get together in another month or so and try Nepalese food...

My back is not happy. I am having my injections on Monday which means I can't take any of my anti-inflammatories or muscle relaxants. I spent many hours on an ice pack yesterday. When ever I start wondering if the medications help, I can tell as soon as I stop taking them.

The cat is very annoying. Which means he is healthy. Yesterday I went to the vet and bought a bad of prescription dry food which cost about three times as much as the over the counter diabetic cat food that he stopped eating after 1 week which was three times as much as the cheap stuff he used to get. So the question is, how long until he decides he doesn't like the really expensive stuff either? Good thing the vet has a money back guarantee.

Today is the fourth of July. I don't know how we are celebrating but we will go enjoy the sunshine. Possibly even cook on the grill outside. My back hurts so we will not go far.

Holy crap! Post # 750

Can it really be 750 posts about my medical crap - not just cancer but everything else (I didn't count it up, when I log in the little counter tells me how many I have written)? When I started my blog over two years ago, it was for the express purposes of dealing with my medical issues and creating a way for friends and family to keep up with how I am doing without me having to go through everything a million times on the phone. So how's it working?

- I don't think most of my family reads my blog so I am not sure if they know what I am doing. Question: what did I do the last weekend in May and what am I doing this coming Monday?

- I think some of my friends read my blog and then they call me to discuss what I wrote - which sort of defeats the purpose but is really okay. I didn't have to explain whats going on but we could talk about it.

-I have found there is a whole world of people who blog there way through cancer, leukemia, diabetes and other chronic illnesses. I have found a whole new world out there full of friends. We read each others blogs and keep up with people who I would otherwise never know. Its pretty cool.

But when I started, did I think I would write almost every day and end up at 750 entries? Absolutely not. I was supposed to be done with the medical stuff in a year. Maybe my secret inner writer is coming through... But my high school English teacher would definitely disagree that I have the capacity to have a secret inner writer. All I know is I am still blogging and people are still reading.

I just found out that Google is having its second 10th birthday (don't know why they can't say 20th birthday) and blogger (who hosts my blog) is turning ten in August. They are collecting stories about blogging... Perhaps I will harness my secret inner writer and come up with something profound.

In the meantime, my back hurts and I have ice on it (and a counteracting warm kitty on my lap). I need some sunshine or I will grow mold. Chronic pain sucks.

Embarassing ailments

Face it, we have all had them. I am not talking about the giant zit that blooms before a hot date or big event but the ones where you call your doctor's office and wish you could whisper it to the nurse... Instead of having to explain it in great detail. So you whisper it to the nurse who makes and appointment. You get in to see them and the nurse says in a normal voice 'so you have a thingy on your whatsis'. The doctor will be right in. Then the doctor examines you and asks all sorts of questions in a normal voice - which you can swear everyone in the waiting room can hear. How mortifying! But face it we all get them.

I have an 'embarrassing ailment' that tends to come and go and is basically one of those things they don't have many treatments for and it may or may not go away. I just have to deal with it and whine about it. But I am getting good at whining and we should do what we can do best.

As I walked through the living room this morning my husband is watching a rerun of Hill Street Blues (courtesy of the DVR we get to watch the same shows we did 20 or 25 years ago) and there was an episode where a character had a boil on his butt. (No I do not have a boil.) I think this is Hollywood's way of saying that TV characters aren't necessarily air brushed and completely healthy with cosmetic enhancements.

Anyway, life goes on with our embarrassing ailments. Sometimes we share them with our friends to give us something to laugh about. Sometimes we ignore them and hope everyone else will be polite enough to do so as well. During cancer treatment, or treatment for any long term or chronic condition, I think you basically lose all sense of modesty (not that I am going to stop streaking or anything) that there isn't a medical topic not to be discussed. Then the embarrassing ailment shows up and sort of pushes over the edge.

Today is another tropical summer day in Boston - 60 degrees (high temp of 64) and rain. I am not making this up. Today's newspaper had instructions on how to build an ark. It has rained for 13 of the last 14 days. The forecast is the same (I think the forecasters all conspire to show the same cheerful faces saying the same thing to reduce the insults from viewers) with rain today and tomorrow but a good chance of sun on Saturday. Tomorrow I bet it says rain today and tomorrow but with a good chance of sun on Sunday.... I am not worried about sunscreen these days. I am worried I will start growing mold (and about spending too much time on the internet and being late for work).