That battle thing

Earlier this week, we went to see the rehearsal for the Battle of Lexington, which will be held at 530am on Monday morning if you wish to see the real thing. (I'll be sleeping thank you.) That is a battle, which led to a war, which led to the Constitution, the United States, and somehow to where we got to today with a polarized government, financial problems, and global warming. But I digress.

There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.

If you look at Dictionary.com we get:

bat•tle¹ [bat-l] noun, verb, bat•tled, bat•tling.

noun

1. a hostile encounter or engagement between opposing military forces: the battle of Waterloo.
2. participation in such hostile encounters or engagements: wounds received in battle.
3. a fight between two persons or animals: ordering a trial by battle to settle the dispute.
4. any conflict or struggle: a battle for control of the Senate.
5. Archaic. a battalion.

Do you see anything cancer related or medical related there? I don't. So why do we use these terms? Opposing military forces are not related to cancer. 

If one has cancer or other ailments, they are not participating in hostile encounters or engagements. 

If one has cancer or other ailments, they are not fighting with another person or animal.

Having cancer is not a conflict or struggle, its an ailment that is treated. 

And cancer has nothing to do with a battalion, even in old English.

Maybe because someone thought they made them stronger if they were battling?

Maybe because someone thought a battle or war is a better image than a person?

Maybe because someone DIDN'T think?

Please do not tell me I am battling anything. I am not. I am living with multiple ailments. I have a life and I am not at war.  Roger Ebert did not battle anything, he also was a person living with medical ailments as well.

I need to widen my interests

Yesterday I went to a luncheon sponsored by the New England Coalition for Cancer Survivorship with a friend. She has had breast cancer and remarked when we arrived that she wasn't used to seeing men at cancer events. Breast cancer events are mostly filled with pink clad women.

The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.

However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.

There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.

I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).

So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.

Recovering after a very long week

In the past months, six or so, my energy levels are significantly down. I need to make sure I have enough down time and time to stay home and do nothing. I can tire myself out quite easily and then pay the price for days.

I had a three day work week this week but am exhausted. I tried to sleep late this morning but the cat sat on me because he wants food and the sun was streaming in from the room across the hall. Note to self evict the cat and close the other shades. I will try again tomorrow.

Emotionally and physically it was a tough week. I came back home after a 380 mile to visit my brother on Monday. Tuesday was another 2" (which turned into 10") snow storm that kept my husband and I home for the day. We reassembled the (damn) dryer after my husband's minor repair. I got a fair amount of work done as well. I even snuck out to the gym in a lull in the storm.

Wednesday, Thursday, and Friday I went to work for six hours each. Wednesday I hit the grocery store on the way home, Thursday I met a friend for a walk, and Friday I went to the gym. Thursday night I was so tired and in so much pain in my feet and hips, I got in bed at 430, PJs by 6 and my husband cooked dinner which I ate in bed. I was exhausted on Friday morning.

Today I have a lunch to go to and am organizing a volunteer event that I won't attend. I am not attending because of pain and fatigue. Well guilt might get me to stop by for a few minutes.

That's just the physical side.

I also found out this week a breast cancer friend is facing a recurrence. We do not know details yet but the words chemo, radiation, and hospitalization have been bandied about. I will try to call her today. One friend talked to her and said she was really out of it but is still perky.

Another online friend passed away after a long fight with cancer. I have never met her but she was one of those people who was incredibly supportive to others in their copings with cancer. Dying way to young, younger than me.

Finally an old friend's husband with stage IV colon cancer has progression in his disease despite treatment.

I hope next week is better. My goal is to get a lot of sleep tonight and rest tomorrow. I also am home on Monday where I can take it easy then as well. The cat will have to learn to let me sleep in.

Big words to be translated

I find inspiration for blog posts everywhere. I keep open tabs  in my browser holding stories for me to write about. Sometimes I get a little backlog - like right now. I have a backlog and the problem or the source of the back log is ... drum roll.... big words. I don't feel like deciphering them and figuring out if they have content to be worthy of a blog post.

I have a Business wire story on the the first test to diagnose fibromyalgia:

• "First Test to Objectively Diagnose Fibromyalgia Now Available - New Peer-Reviewed Research Identifies Diagnostic Biomarkers for Fibromyalgia SANTA MONICA, Calif.--(BUSINESS WIRE)--A recent peer-reviewed study, published in BMC Clinical Pathology,^[1] reveals a medical breakthrough discovering multiple biomarkers based upon highly sensitive and reproducible medical investigations. Conducted by the University of Illinois College of Medicine at Chicago (UIC) and EpicGenetics, a privately-held biomedical company, the research has led to the development of The FM/a^® Test (www.thefmtest.com), the first test to objectively diagnose fibromyalgia."
  

The important thing here is that there never has been a real test. But look at those big words!

• 'Drug holidays' beat cancer drug resistance in mice -
  Introducing medication-free spells to some cancer treatments may keep patients alive for longer, studies in mice with skin cancer suggest.
  The animals had melanoma, which can rapidly become resistant to treatments.
  However, a study in the journal Nature showed tumours also became dependent on the drug to survive. Withdrawing treatment caused tumours to shrink.

I would be happy to have a drug holiday every once in a while. I mean am I building up a resistance to some of the medications I am on? Or do the days count when I just forget my pills (oops)? And then the article goes on with lots of big words!

• Skin cancer 'able to fight off body's immune system'
  A deadly form of skin cancer is able to fend off the body's immune system, UK researchers have found.
  Analysis of tumour and blood samples shows that melanoma knocks out the body's best immune defence.
  Potential test could work out which patients are likely to respond to treatment, the Journal of Clinical Investigation reports.
  Cancer Research UK said the body's response was a "complex puzzle".

So they discover treatment and then they find out it doesn't work for everyone.  Great. More research is needed, don't you think?

• Key Enzyme Missing from Triple-negative breast cancer
  Key Enzyme Missing from Aggressive Form of Breast Cancer, Groundbreaking Study Shows
  Feb. 28, 2013 — A groundbreaking new study led by the University of Kentucky Markey Cancer Center's Dr. Peter Zhou found that triple-negative breast cancer cells are missing a key enzyme that other cancer cells contain -- providing insight into potential therapeutic targets to treat the aggressive cancer. Zhou's study is unique in that his lab is the only one in the country to specifically study the metabolic process of triple-negative breast cancer cells.
  Normally, all cells -- including cancerous cells -- use glucose to initiate the process of making Adenosine-5'-triphosphate (ATP) for fuel to carry out essential functions. This process, called glycolysis, leads to other processes that use oxygen to make higher quantities of ATP -- but solid tumor cells, which have little access to oxygen, are forced to rely almost exclusively on aerobic glycolysis for survival.

 The next paragraph is a little deep:

• Zhou's study, published in Cancer Cell, showed that the powerful transcription factor complex Snail-G9a-Dnmt1 is over-expressed in triple-negative breast cancer, inhibiting the enzyme 1,6-bisphosphate (FBP1). The loss of this enzyme shuts down the glucose anabolic pathway and promotes the glucose catabolic pathway, leading to a large amount of glucose entering the tumor cells and thus "feeding" the aggressive cancer. This metabolic switch empowers the triple-negative breast cancer cells to suck more glucose from the body, increasing macromolecule biosynthesis in tumor cells and maintaining ATP production despite a dearth of nutrients and an oxygen-free environment.

Way too many big words! But behind it is some very interesting news.

• Early rheumatoid arthritis and resolving fibroblasts segregate according to Dickkopf related protein 1 expression
  Dickkopf related protein 1 (DKK1) has been proposed as the master regulator of joint remodelling. This Wnt signalling pathway inhibitor is involved in osteoblast growth and differentiation. In rheumatoid arthritis, increased DKK1 plasma levels correlate with inflammation and bone erosions. Furthermore, patients with rheumatoid arthritis who carry genetic variants in the DKK1 gene have higher serum DKK1 levels and more progressive joint destruction, suggesting a fundamental role for DKK1 in rheumatoid arthritis. In the diseased joint, synovial fibroblasts are key mediators of bone and cartilage destruction via secretion of matrix metalloproteinases and regulation of monocyte to osteoclast differentiation. In this study we analysed whether DKK1 secretion might contribute to this effect. We hypothesised that synovial fibroblasts from patients with early rheumatoid arthritis would be characterised by high DKK1 expression compared with those from patients with resolving arthritis.

Too many big words but lots of great news here. I am leaving these articles to you, the readers, to decipher as I am taking a break from big words these days. Chemobrain/fibrofog or just plain pain and fatigue are allowing me to do this. And just plain old lack of inspiration.

You can't talk the talk, if you haven't walked the walk.

While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.

A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.

One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.

I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.

Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:

"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.

“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”

Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."

So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.

Once Burned, Twice Shy

When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'

 After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'

In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.

With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.

Both are life altering. Both leave you changed forever. So why does one have to make people run away?

This is a blog about cancer after all

I realize this is a blog about cancer and living with a cancer diagnosis. but sometimes I don't blog about cancer. Well, I do have lots of other ailments to blog about. And I try to ignore cancer so I'm not living in cancerland where its all cancer all the time.

But it does loom in the background of my life often. Well, almost constantly. Its hard to make it go away. I am ignoring it. I have one of 'those' appointments coming up that I am really trying to ignore. Its one of the appointments where there are negotiations, watchful waiting and discussions on what to do next.

I have no new cancer research to write about now. I can poke around and find some - maybe later this week. I have no pinkification to whine about except this is the time of year for recruiting for all the pink walks. I skip all those commercials. 'I can walk sixty miles for someone who has cancer' and all that cutesy crap. You won't ever catch me in one of those walks. More power to anyone who chooses to do them.

One extra benefit aggravation of developing ailments which cause pains around your body is you can take your mind down that evil road to cancer hell very easily. With cancer, you need to be aware of your body and look out for aches and pains that don't go away and linger. Well with my new ailments, RA and fibro, you have ailments which cause aches and pains that don't go away and linger. I tell myself they can't be cancer because I can blame them  on RA and fibro.

I try to ignore them and live my life on the edge of cancerland as much as possible.

My goals

Now these are not by any stretch New Year's Resolutions - that isn't until next week so I have lots of time left to procrastinate on them. These are goals of things I want to do. I mean besides win the lottery or find the cure for cancer and stuff like that. These are just some basic goals.

I have been reading other people's blogs for as long as I have been blogging. Most of them are written by other cancer people. I also hang out online with all sorts of healthy and unhealthy people. I have learned a lot about how people regard life with their ailments. I know what I think but sometimes I am a slacker.

Okay, here they are:

• I will not succumb  to the 'woe is  me' attitude. So I had cancer twice now (and am still here) but it is not a case of woe is me. I will prevail.
• Cancer is not going to kill me anytime soon. I don't care what stage you are, your cancer is not necessarily what is going to kill you. You could get hit by a bus tomorrow just like anyone else. If you are Stage IV, it is still true for you - a bus could come your way. So why live like cancer is what is going to do you in? And with treatment these days, there are people living out there for decades with metastases. So my goal is to live as long as possible.
• There is a lot more to life than my list of ailments and boxes of pills and doctor appointments. I can't do some of the things I used to be able to do - like skiing off the top of the headwall into a big bowl of powder snow, or climb big mountains, or whatever. But I still can do a lot of things and have fun doing it. 

I think that's enough for today. I need to get some work done and clean the house in preparation for house guests (well sort of clean). But I do have to get to work.

The rise and fall of Lance

Lance Armstrong dealt with a pretty nasty cancer diagnosis and then turned it into something good by creating the Livestrong Foundation. However, it turns out he built his athletic career on steroids and his house of cards has collapsed. I had always admired his athletic feats but now feel like he lied to all of us.

Allow me to clarify. He won 7 Tour De France races. He won an Olympic medal. He was Mr. Clean. He told us for years that he never took performance enhancing drugs. And it turns out he lied to all of us.

This summer when he told the world he was going to stop fighting the charges, I think we started to become aware that there might be some truth to the claim. Now it has all come out that there was a secret system of performance enhancing drugs in the US cycling team. Lance has now stepped down from his world famous charity, he has lost his endorsements, will probably be stripped of his medals, and banned from all future competitions.





Earlier this year we watched another famous charity, the Komen Foundation (for the Cure) suffer a significant setback with the Planned Parenthood debacle. It would be a shame if another big charity, the Livestrong Foundation, also suffered as the result of the lies told by its founder.

It is also a shame that the dishonesty of one man will impact the lives of so many others. We have lost a hero who was a symbol of hope for many that you can return after cancer and exceed your previous expectations.

It might be time for Lance to step back from the limelight and let those who do not lie to shine. Honesty is always the best policy and its time he realized that.

Stress and Depression impact cancer survivor

Thank you to this latest study (because we needed another study) illustrating how I am doomed. I have two cancer diagnoses  under my belt. So I am a tad stressed at times. Wouldn't you be? I mean cancer? Twice? Thats a bit stressful. And its kind of depressing as well.

"A disease like cancer can be a mortal battle, often fraught with overwhelming stress. Given that stress management can be difficult even under ordinary circumstances, elevated feelings of anxiety and depression in cancer patients are certainly understandable.

Yet, several recent studies underscore how critically important it is for those fighting illness to learn how to combat stress. A team of researchers led by Lorenzo Cohen, professor of general oncology and director of the Integrative Medicine Program at The University of Texas MD Anderson Cancer Center, found that symptoms of depression among a group of patients with late-stage renal cell carcinoma were associated with an increased risk of death."

This was published in August in PLOS ONE, a scientific journal full of big words which you can read here.

Thank you. I am more stressed because you say my stress and depression will kill me. I don't have renal cancer (yet) but I am sure they will do more studies and tell us how it will affect other cancers. You made my day.

PCIP.gov

Remember that website. It stands for Pre-Existing Condition Insurance Plans. It is a US government plan for those without healthinsurance. Here are the eligibility requirements:

To qualify for PCIP, you must:

• Have a pre-existing condition
• Be a U.S. citizen, or live in the U.S. legally
• Have been without health coverage for the last 6 months

You are NOT eligible for PCIP coverage if:

• You have other insurance coverage, even if it doesn't cover your medical condition
• You're enrolled in a state high risk pool
• You have Medicare, Medicaid, CHIP, VA or TRICARE coverage
• You have job-based coverage, including COBRA, or continuation of coverage, even if it’s about to end
• You have a limited benefit plan

It is available for residents of  Alabama, Arizona, Delaware, District of  Columbia, Florida, Georgia, Hawaii, Idaho, Indiana, Kentucky, Louisiana, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, North Dakota, South Carolina, Tennessee, Texas, Vermont, Virginia, West Virginia, and Wyoming. 

All other states offer their own PCIP programs and you can find a link to them here.

The reason I am writing this post is because of this woman, Leslie Elder with four cancer diagnoses and no insurance, who died of cancer because she did not know she was eligible for insurance with these new plans. This is so wrong.

The new Affordable Care Act provides insurance to more people but I cannot say by any stretch of imagination that it is a 'simple plan'. Didn't Congress end up with a many thousand page document? Its a lot of information to get out there.

The wheels on the cancer bus go round and round, round and round, round and round.

The wheels on the cancer bus go round and round, round and round, round and round.
The wheels on the cancer bus go round and round, round and round, round and round.
The wheels on the cancer bus go round and round, round and round, round and round.
The wheels on the cancer bus go round and round, round and round, round and round.

I am not looking forward to this week. I have a dentist appointment - which I never appreciate - and then things go down hill from there. I'll report on the results later when I am ready - it depends on what I hear when I will report.

But at the end of the week we are off for fun adventures so I have things to look forward to.

Work has been crazy busy. Both jobs have been crazy busy. I have too much to do and not enough time. Well I have enough time but not enough oomph to do everything. And the house needs some serious cleaning, even by my standards. The dust bunnies were encroaching. Last night I was bad (for my back) and vacuumed the living room. I usually leave that for my husband.

This morning, my husband who currently is on antibiotics said to me 'I hate taking so many pills'. I said 'welcome to my world.'

Otherwise I'm fine. I'm going out to breakfast and then off to the gym. Yes it sounds kind of backwards - should be gym then breakfast but that's the way my schedule goes.

Moving on from cancer

I have noticed in recent months, make that years, that I blog less and less about cancer and my medical adventures and more about cancer and research and treatments (and other people's stupidity). Its not that cancer is less important in my life but that it stresses me less. I do have impending doctor appointments that make me cringe. Who was it who said that going to the oncologist is like visiting your parole officer, you never know when they are going to yank you back into some kind of hellish prison?

I only visit an oncologist four or five times a year. My radiation oncologist and my medical oncologist like to see me twice a year. My surgeon's office likes to see me once a year and will be in charge of my mammograms for life. My endocrinologist likes to seem me twice a year. That is like visiting an oncologist because she is there for thyroid cancer. So I guess I was wrong 2+2+1+2=7.

They like to have their visits nicely spaced out as well. This spring I was a bad patient and saw my medical oncologist and my radiation oncologist on the same day. One appointment was rescheduled a few weeks after it should have taken place and another one I moved up a few weeks because I wasn't available when it was scheduled. They didn't like that - I got that message. I was just trying to fit them around my schedule. Instead of sticking to theirs. They like to see me every couple of months to check for those pesky cancer cooties in their own way.

In general my cancer stress level is a little lower than previously but its still there. You can't erase two cancers. Stephanie, over at 'Bah to cancer' announced this morning (in England so she is up earlier than me) that she is moving away from cancer defining her life and on to other things. She does phrase things pretty well but then she's a writer. I am not. I am a mere blogger.

Cancer doesn't define me more than it has shaped my life. Will I move too far away from cancer? Probably not.

Warning - Smart phones are dangerous

"People are risking their health by working on smartphones, tablets and laptops after they have left the office, according to the Chartered Society of Physiotherapy."

No, they don't (think they) they cause brain tumors. Its much much worse! They hurt their..... [insert drum roll]... posture! I first read this article a couple of days ago and still find it intriguing in the sense of overhype of stupid bits of news.

"It says people have become "screen slaves" and are often working while commuting or after they get home.

The society said poor posture in these environments could lead to back and neck pain."

Here's the advice:

"Unions said people needed to learn to switch off their devices."

That's it. Use the off switch. Tell your boss to take a hike and stop bugging you after hours - unless you really have a critical profession and the world might come to an end if you didn't check your email or voice mail or catch the latest Kardashian gossip on Twitter.

The chairwoman of the Chartered Society of Physiotherapy, Dr Helena Johnson, said the findings were of "huge concern".

She said: "While doing a bit of extra work at home may seem like a good short-term fix, if it becomes a regular part of your evening routine then it can lead to problems such as back and neck pain, as well as stress-related illness. 

"This is especially the case if you're using hand-held devices and not thinking about your posture. Talk to your employer if you are feeling under pressure."

The general secretary of the Trades Union Congress, Brendan Barber, said: "Excessive work levels are not good for anyone. Overworked employees are not only unlikely to be performing well at work, the stress an unmanageable workload causes is also likely to be making them ill.

"By the time someone is so overloaded they constantly feel the need to put in extra hours every night of the week at home, things have clearly got out of hand.

"Individuals who find themselves unable to leave their work in the office should talk to their managers and learn to switch off their smartphones."

This is a real article from BBC. I personally find the article a prime example of the decay of modern society (did I really use that phrase?) Well anyway, here's my thoughts on why this is so bad.

1. Overuse of hype. Good posture is a good thing and we all knew that. Our parents always said 'stand up straight'. But I think the problem is a bit overinflated here. Its not a medical disaster.

2. I don't call it a medical issue anyway. Its a management issue. Unless your job requires it and you knew it signing up, you should not be 'on call' in the evenings and on weekends. Its time management for you and management for your boss.

3. I question how newsworthy this is anyway. I mean there's a lot more going in the world - SJC ruling on healthcare, Syria and Turkey, research on the cure for cancer.

Posture is less of a concern to me than cancer. Sorry. Since my smart phone isn't going to kill me off anytime soon and my back already hurts, posture is low on my priority list.

Let's rule the world

As of 2012, there are 13.5 million Americans with a history of cancer. That number is now expected to grow to 18 million by 2022. This is seen as a potential problem due to our health problems as a result of cancer treatment - chemo brain (a/k/a cognitive deficit), blood disorders, cardiovascular problems, muscle pain - and the emotional issues caused by the stress of fear of a recurrence.

I don't see this as a problem. I see it as progress. Fewer of us are dying. People who are alive are not a problem in any way, shape or form. (Unless they are an annoying sibling.)

Anyway, I think we should rule the world. Why not? Just because we had cancer doesn't mean we are incompetent.

We would change health care to eliminate all pre-existing condition issues. We would create laws that allow paid time off while in treatment. We would make discrimination against cancer people against the law - you know those people who think you are contagious and run away at the sight of you? We could have beauty contests to show off surgical scars. We could make special parking spots for cancer people  in treatment so we could get the good spots, next to the handicapped ones. Once you get cancer, you get free medical care for life. (Ooh. I like that one.)

This could be good. We could start the Cancer Party to run against the Democrats, Republicans, Green Party, Libertarians, and Tea Party. Our focus could be cancer prevention, care and research. Cancer research would be fully funded.

But wait, we have chemo brain, could we remember anything long enough to rule the world?

Managing your diagnosis

I was talking with a friend last week. She was diagnosed with breast cancer about the same time I was and was scheduled for the same sort of treatment. But she was allergic to chemo and never completed more than her first dose but she did have radiation.

A month or so ago she was throwing up blood and all sorts of nasty other issues. After several trips to the ER and numerous medical (mis)adventures, it turns out she has an ulcer which was irritating her her yet undiscovered stomach cancer causing it to bleed. She then had a bone scan and found all kinds of shadows and was then going to have some more medical (mis)adventures to find out what spread where - how fun. Now she is in that wonderful land of 'holy crap-more-cancer-what-do-we-do-I-need-staging-and-a-treatment-protocol'.

Next week the rest of us who were in the same 'introduction to breast cancer support group' are getting together to find out what's going on before she leaves for her two week vacation in Bermuda (and we are all jealous about that part). When she returns from vacation she gets to start whatever chemo and other fun stuff that is lined up.

She is facing a not very fun diagnosis with a smile. But we were talking about what she wants to know from her doctors and when. She has told her doctors she doesn't want to be told anything unless her daughter is there. We also talked about how this is the time to take charge and tell the doctors what to tell her and what not to.She gets to be the one to tell her doctors what they can tell her and when.

We were educated by our first diagnoses and now we can tell our doctors how we are co-managing our treatment instead of the doctor getting to take the single lead. It is unfortunate that we get to this state but once we enter that oncology department the second time, we are going to be in charge.

I need an inspiring blog post

I haven't been very inspiring recently, not that I think I am that inspiring ever. Sometimes I wonder why anyone reads my blog at all but that is another story.

Its been almost five years since my breast cancer diagnosis. Am I supposed to have a party or something? I don't think so. I'm not doing much celebrating. I'm just not in the mood. I mean what is the significance of five years? Am I all better then? I was told breast cancer would take a year out of my life and then I would reach a new normal and life would go on. Well, it didn't really get to any new normal so my expectations for a life changing event at five years are some where in the basement.

Cancer swallows up your life and you learn to deal with it and continue to cope. But it never really goes away. So I keep blogging about my little medical misadventures. I am told people read my blog and like it (for whatever reason). Sometimes I hear that its nice to see someone who has lived for so long with cancer.

But then sometimes I hesitate to write about somethings. If I have been living with thyroid cancer for over 30 years but then all of a sudden need more tests, will I cause concern among others? Am I proof that cancer will doom us all?

No there is nothing new and significantly wrong with me that I know of. I survived my annual mammogram with no bad news or additional images required. But I didn't feel any big sigh of relief. More tests this summer. But that's nothing new. I always have more tests coming up. If its not one thing its another. I just have no inspiration to write about anything.

Cancer is hilarious

Well from the patient's side it is, definitely. I posted about being funny last week (or sometime recently that has fallen into the abyss called chemobrain). But some people are funnier than me. I read a blog called 'Cancer is Hilarious' which details the life of Kaylin who had a sarcoma and all sorts of medical adventures. Then in my pursuit to read all things funny about cancer, some how yesterday I stumbled across this fun little project called "Terminally Illin'" where the same Kaylin is raising money on Kickstarter to help publish a cancer cartoon book.

Slightly cynical, slightly irreverent, and REALLY hilarious, "Terminally Illin" is a candid look into the life of a young adult battling cancer, but with a psychedelic, sci-fi twist! It’s more than a comic book: It’s provocative, educational, entertaining, and totally original.  Think of "Terminally Illin" as a chemo-induced "Alice in Wonderland' meets campy 'Hollywood' action-adventure.

In our story, our hero goes in for her first day of chemo, but ends up getting lost in a fantasy world within her own microscopic body - on a quest to meet her disease face-to-face and kick it's butt!!

She's joined by her pet kitty, Iceman, as they set out to destroy the Tumordome, the invading cancer cell army, and their leader - the little dictator that's bent on world domination. But they don't do it alone - they make friends with a rag-tag bunch of weakened immune system cells that are on their last leg.  Hilarity and butt-kicking will ensue.  

This is their second book. I wish I had a copy of the first book as I wait for this one to come out. Anything that invokes a chemo-induced Alice in campy Hollywood sounds good to me.  There is not enough humorous stuff about cancer. There is not enough cancer stuff for young adults with cancer. So you add it up and you get funny stuff for all of us with cancer, especially those on the younger side. I'm all in here.

I will donate to their cause on Kickstarter, I encourage others to donate as well.

One is the loneliest number

But why does cancer make it lonelier? Nancy over at Nancy's Point blogged about the loneliness of metastatic breast cancer yesterday - which got me thinking (I'm sorry to say). She also mentioned a few other blogs I follow in her post.

I think cancer can be very isolating and lonely. First of all you feel like crap between surgeries, chemo, and radiation. Then you lose your hair and gain those chemo pounds which make you feel completely unlike a fashion plate and more like a bald, blob. You are reduced to baggy clothes because nothing fits right and some kind of head gear to hide baldness. Finally, it drags on and on and on and on and on and on as you go from doctor to doctor. I would think if you reach the metastatic stage it gets a never ending feel. But it can feel never ending as you plod through the ups and downs of early stage treatment too.

Also, then your 'friends' stop being friends because they might catch cancer cooties. And your Friends don't drop by as often because you are always feeling like crap and they don't want to drop in unexpectedly if you aren't feeling okay. Chemo has a way of making dining out a lot less fun as you fight nausea. You cant drop everything and run off to the beach, a museum,  or Tahiti because you either are too tired, have a doctor's appointment, or need to change your chemo schedule. So you just aren't fun.

But I have learned over the years. At my first cancer diagnosis, I tried to talk about it to a few people and managed to lose a few friends in the process so I gave that up. I isolated myself in regards to my cancer. There are people who knew me for decades and didn't know about my cancer. In some ways I felt it wasn't there business but I also felt I couldn't talk to anyone about it.

With my second cancer diagnosis, I was a bit more open. I talk about it. I blog about it. I Facebook about it. One of my jobs doesn't know I have had cancer but the other one is full of cancer people. I talk to cancer people. I have decided not to let myself be lonely again. I may not scream it from the rooftops but it is part of my life and who I am.

If you have cancer, any kind and at any stage, there is no reason not to go on living and trying to go to the beach or run away to Tahiti. Or to not make plans for the next 20 years with friends and family. I have decided not to be lonely.

Cancer twice has caused me to re-evaluate my priorities. I spend less time and energy on things which aren't fun and with people who are toxic. I spend more time doing the things I enjoy with the people I enjoy. I relish the opportunities to be normal. I don't let myself get down into the 'poor me' mentality which is dangerously close to the cancer roller coaster from hell. I have decided not to let cancer make me lonely again.

While I don't have metastatic cancer, I think cancer twice has filled my life with lots of doctors who like to say 'with your medical history we need to be sure.' I make a point not to be lonely.

I'm allowed to be funny

In this morning's newspaper advice column (go to the second question), someone wrote in and said that she was someone living with cancer and had lost her mother to cancer and used humor to cope - and that offended someone. Who is this moron (and I use the term loosely)? The person who is offended I mean. The person who wrote in is sane, normal and intelligent because they questioned the 'moron's' thought process.

If us lucky people with cancer couldn't use humor, we would be boring. And depressed. And no fun whatsoever. We would need (more) therapy. We would be fat(ter) and lazier. We wouldn't be having fun with life which is a big part of living.

I use humor to cope because I can't do it any other way. I refer to us as the ones 'lucky enough' to get cancer because if I look at it any other way, it would be depressing. And that would suck. Besides it puts us in some sort of elite list - which makes us special. And we need to be special damn it. We would prefer not to have oncologists on speed dial or have their email addresses memorized.

Go Google the term 'laughter is the best medicine' and you will find numerous results - and many are based on medical studies (because we needed more medical studies) to prove that it is true. Where would life be without humor? Kind of boring. Was cancer supposed to suck the life and humor out of us? With a cancer diagnosis are we supposed to go sit in a chemo waiting room for eternity? Now that would be a real hell.

I'm allowed to be funny. I just hope other people think I'm funny. Sometimes I wonder if I am....