On not being normal

If you find a truly 'normal' person, please let me know. No one is normal - its just a fact of life. But some people are more abnormal than others in different ways. Take me for example, I am very abnormal in the medical world. I have more medical ailments than my 80 something parents. 

All those health articles with tips for healthy living usually do not apply to me. I mean I can hydrate more but I can also floss more too.

Anything that relates to jump starting your metabolism to lose weight - um, I don't have a thyroid so its not going to do anything. Or more or different exercise - sorry, between RA, Fibromyalgia, lymphedema arm, and other injuries that never seem to go away - not happening.

I watch the ads on TV about the newest gym and fitness equipment - not going to do much for me. I go to my gym for dilapidated people and a trainer helps me through bumps in the health road. The  gym is running a contest this month for those who go the most often will be entered in a drawing for some big prize. I can't participate because I can't go more often. I couldn't participate in their last team challenge that was about increasing fitness. The team who increased their fitness the most won t-shirts or something - bragging rights? My goal is to maintain my fitness not increase it.

My three days a week at the gym are about my maximum. I do try to go for a walk once a week as well but that doesn't always work out.I can't just hop on my bike, sign up for a yoga or pilates class. The newest fitness apps? Doubtful.

The so called 'normal' people can lose weight by eating less and moving more. I can eat less but I can't move more.

I am not making excuses just expressing my frustration. I add medications that have that lovely weight gain feature and then I can't move more to counter act that. I try to eat less and it doesn't seem to help.

It could be compounded by that evil menopause (or in my case - chemopause) side effect of weight gain. It could be compounded by the fact that the office I work in has the tendency to bring in evil doughnuts and things like that.

I just need to accept I'm abnormal and my inner size eight is screaming to get out of the current size 12 body.

When do events take over their causes?

Here's a poser for early in the day: when do events take over their causes/ailments? Allow me to clarify a few things:

I think there are two kinds of events:

• The local event - a fundraiser for the family of someone with cancer or another ailment for example or for a local charity. The events are run by the people who know the family/organization and are close to them. The participants are mostly their friends with a few others thrown in. The amounts given are dug from deep down in their pockets with the concern for the monthly budget and mortgage payment. Every cent raised is handed over to a happy individual or family who may or may not even have known it was happening. Afterwards the recipient is amazed at the generosity of others and so grateful or the organization is able to continue to help others in the community.
• The other kinds of events come with media and hype - big fancy commercials and slick ads - to show up many  millions are touched by the disease/ailment/whatever each year and how everything you can do to help this wonderful worthy cause is so important, blah, blah, blah. Your donation/support/participation will help so many other people. The recipients don't really know who raised the money and the participants don't know the recipients. They are just running/riding/'sport'-ing their way to help a worthy cause because they may know someone who might have had the ailment. And they are required to raise a substantial amount of money and provide a credit card number to bill the amounts not raised. They ask their friends and families donations as they feel the pressure to do so.

There is a huge difference between the two kinds of events. While the donors and participants both might feel they are helping a worthy cause, there is a huge disconnect between the two types.

In my mind I am thinking of events like the Pan Mass Challenge which is run by the Dana Farber Cancer Institute and all funds raised are used to fund cancer research and the organized Komen Three Day, Avon Two Day, American Diabetes Association's Rides and all those other big events where no one knows each other and the recipients are far away and unknown. Does the hype and media pressure and obligations of the participants outweigh the cause itself?

I often donate to participants in these events because I know the pressure they are under to raise funds. But I also give to the local events because I care.  Does the event take over the cause because of the disconnect between the participant and the recipient when the media and hype set in? When does money and pressure supersede the cause?

Finally, am I making sense?

A brief list of fibromylagia symptoms

[Note I did not write this list. It was on Facebook shared by Creaky Joints. But I find it to be very true.]
I have highlighted the ones that I experience regularly. So if you ever wonder how my day is going, just think about this list.

1. PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.
2. FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.
3. SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns " feels like I haven't slept."
4. PARESTHESIA- numbness or tingling. ( non dermatomal)
5. DEPRESSION- most often reactive as with chronic pain condition.
6. ANXIETY- may include panic attacks.
7. PERSONALITY CHANGES- usually a worsening of a previous tendency.
8. MOOD SWINGS
9. SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.
10. HEADACHES- tension and or migraine.
11. COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short term memory loss.
12. FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.
13. DYSTONIA- stiff muscles due to involuntary contracture. Difficulty in moving tongue to speak.
14. FREQUENTLY SAYING WRONG WORDS
15. BURNING SENSATIONS
16. LIGHT HEADEDNESS - "Fibro Fog", spaced out, cloudy.
17. MORNING STIFFNESS
18. EASY BRUISING
19. MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.
20. NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes the symptoms and signs of Dermatographia.
21. DISEQUILIBRIUM- Vertigo
22. MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.
23. SCIATICA- like pain
24. PHOTOPHOBIA- Intolerance of bright lights.
25. ALTERATION OF TASTE, SMELL and HEARING.
26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.
27. DECREASED PAINFUL SOUND THRESHOLD.
28. TINNITUS- ringing in the ears.
29. OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movement of the eye ball.
30. CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle used for focus as well as skeletal muscles for tracking.
31. INTOLERANCE OF ALCOHOL
32. ENHANCEMENT OF MEDICATION SIDE EFFECTS
33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS
34. WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants
35. RESTLESS LEGS
36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)
37. POSSIBLE CARBOHYDRATE INTOLERANCE
38. SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)
39. HEARTBURN- secondary to I.B.S.
40. SUB-NORMAL TEMPERATURE
41. NIGHT SWEATS.
42. SENSITIVE TO TEMPERATURE EXTREMES
43. BREATHING DIFFICULTIES
44. HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic in FM than normal.
45. IMPOTENCE- reactive and occasionally.
46. SEVERE PREMENSTRUAL SYNDROME
47. FREQUENT VAGINAL YEAST INFECTIONS.
48. MUSCLE SPASM- twitching.
49. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.
50. PELVIC PAIN.
51. ABDOMINAL WALL PAIN.
52. DRY EYES AND MOUTH.
53. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.
54. RAYNAUD'S- like symptoms.
55. CARPAL TUNNEL SYNDROME-possible related condition.
56. HAIR LOSS-secondary to psychological stress from FM.
57. VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.
58. PLANTAR ARCH-or heel pain. Exacerbated in FM.

This list of symptoms has been correlated by the Arthritis Foundation S.A.

So I have just a few, well some, maybe several. What the hell, I have a whole bunch. I will not highlight my 'favorites'. We will just say, they all suck.

Thyroid cancer and life with out a thyroid

A pop quiz: What does your thyroid do anyway?

1. Something to do with weight.
2. Some weird gland thing that we all have but doesn't do much.
3. I have no idea.
4. The master gland of metabolism and energy.

If you answered #4 you get a gold star. If you answered any of the others, you are not that different from the average person.

The thyroid is our master gland of metabolism and energy. Every single body function that requires oxygen and energy -- basically, everything that goes on in our bodies! -- requires thyroid hormone in proper amounts. That means we need the proper balance of thyroid hormone in order to feel and live well. We need thyroid hormone to think clearly and remember things, to maintain a good mood, to grow hair and nails, to have basic energy to get through the day, to see well, to digest our food, to burn calories, to be fertile, to get pregnant and have a healthy baby, to have a good sex drive, and much, much more. In some ways, you can think about thyroid hormone as the gasoline that makes the car go. No gas, and there's no way to move forward. 

So if you don't have a thyroid, life is very different.

There are millions of Americans with thyroid cancer issues. But for the first time I have found something that explains, in layman's terms, what hypothyroidism, hyperthyroidism, and the implications of a thyroidectomy after thyroid cancer.

If your loved one has thyroid cancer, they have an entirely different challenge. The majority of thyroid cancers are considered highly treatable and survivable, so doctors and others often cavalierly refer to thyroid cancer as "the good cancer." But the reality is, no cancer is "good," and someone who has thyroid cancer has cancer, "the big C." Cancer as a concept is frightening, and raises fears and concerns. Someone with thyroid cancer initially may have few, if any, symptoms. In some cases, however, they may have hypothyroid, hyperthyroid, or a combination of symptoms of a thyroid imbalance. Most thyroid cancer patients require surgery to remove the thyroid -- and this can be daunting, including the idea of a several-inch incision in the neck and resulting scar. After surgery, many thyroid cancer patients will need to have followup radioactive iodine treatment to ensure that all the cancerous tissue was removed, and it can be many weeks after surgery before a thyroid cancer patient -- who by that point is typically quite hypothyroid -- can start thyroid medication to again get lifesaving thyroid hormone they need. And the thyroid cancer patient in your life will require lifetime of medical treatment for the resulting hypothyroidism, along with periodic -- and sometimes physically challenging -- follow-ups and scans to monitor for a recurrence of the cancer. 

You will note a few key statements:

• No cancer is "good"
• Require lifetime of medical treatment for th resulting hypothyroidism, along with periodic -- and sometimes physically challenging -- follow-ups and scans to monitor for a recurrence of the cancer.

So please take a few minutes to read and understand what your thyroid does and what is life like with thyroid problems. These are chronic problems and can be treated but cannot be cured.

What was I thinking?

In 2008, I participated in a weekend long retreat run by Casting For Recovery on Cape Cod where we learned fly fishing. It was a retreat for women with breast cancer and had such an impact on me, I went back and volunteered in 2009, 2011, and 2012 (no retreat in 2010, 2013, and 2014). The woman who lead the retreat for 15 years resigned in 2012 and the group sort of fell apart as others also resigned because they had been volunteering as long and it was time to move on.

Now, me, yes, me with all my health ailments has volunteered to be the new retreat coordinator for Massachusetts and Rhode Island and get the retreat going again in 2015. I do not have much to do, I am sure it will be easy with all my excess energy. I need to come up with a team of volunteers, run 3 fund raising events each year, and get it all organized.

This is what I have so far for a team: me with a few others who have promised to help once we get moving.

This is what I have far for fundraising events: I think we will have a reunion luncheon in the fall.

Otherwise, we do not have anyone, nor a location, nor a budget (I need to write that one out), nor much financing. I have a bit of work to do.

But I want to do it. The weekend I participated in the retreat I remember driving there thinking 'what the hell am I doing going away for a weekend to learn about fishing - and I'm not touching a single slimy fish - with a bunch of people I don't know - I really am crazy - I must have lost all brain cells during chemo. But wait, I have gall stones and can always claim a gall bladder attack and leave if it is really that bad.'

It really was a turning point in my coping with breast cancer. I left inspired and energized. I even got a fishing rod (not that I ever go fishing). I wanted to help other women have the same experience that I did. The three years I volunteered were all the more beneficial after seeing the participants grow and cope with their breast cancer diagnosis and treatment were even more rewarding.

So now, I am determined to get this program back on the road again. I am mailing out a letter to all previous participants in MA and RI and getting the ball rolling. Another former participant is printing the letters. I will stuff the envelopes next weekend and send them on their way.

If you want to help me in my moderately insane decision to do this, please let me know. You can volunteer (contact me) or donate (see their website for details and mark your donation for MA/RI retreat). Sometimes I may be really crazy but I think this is something I really want to do. Its all about the benefit for the women who are coping with breast cancer and the benefit it gives to them.

Not enough rest

The combination of all my ailments requires me to make the most of downtime and get enough rest. When I don't the fatigue just piles up and I end up collapsing for a few hours. I try to schedule myself with enough rest breaks built into my week so that I can stay on top of what my body needs.

I focus my life on working part time, going to the gym three days a week and fitting in all my damn doctor appointments. This gives me two afternoons in the week where I can do nothing.

If I have a few hours of doing nothing - meaning sitting around and watching tv, knitting, reading, surfing the internet, or whatever that does not require me to run up and down stairs, leave the house or anything expelling more than the smallest amount of energy. This includes avoiding house cleaning, cooking (because that requires standing), etc. Also going out of the house requires walking places which can be too much.

However sometimes my schedule is overridden by other needs. Friday was an example. I got up early to go to the gym, then grocery shopping for myself and my parents, lunch with a friend and then home for the afternoon where I could relax.

When I got home from the grocery store, I decided to cook a chicken in the crock pot for the first time. I looked it up online and found that I should cook a 3-4 pound chicken for 3-4 hours on high. I had a 6 lb chicken and it was 11 am. (Why am I blogging about cooking chicken?). I didn't want to wait to start it until I got home around 2 because I wasn't sure I had enough time. I put the chicken in on high and figured it would be okay because I would only be gone for a couple hours. Famous last words.

I met a friend for lunch where I am helping with the New England Coalition for Cancer Survivorship (www.neccs.org) annual awards luncheon on March 29. (Tickets are $50 and its a worthy cause.) Then I remembered I forgot to pick up a prescription for my husband. Then I ran into an estate sale. Then I got a phone call from a family member who needed to go to the Emergency Room at the hospital. Let me add I had no way to contact my husband because he did not have a phone or access to email at work that day. And the damn chicken kept on cooking.

I got home at 630 pm. I was completely exhausted. My back was hurting and I hadn't had pain meds with me. I had a minor temper tantrum about the damn chicken (which was cooked to perfection) because I was so tired. I got in bed in tears because I was so tired. I was too tired. I ate dinner in bed but got up to watch a little TV with my husband and then slept for 12 hours.Yesterday I ran out of steam by about 2pm. Too bad we didn't get home until about 430.

Today I am meeting a friend who I haven't seen in MONTHS, visiting sick family members, and coming home to rest for the afternoon. I really need to spend the afternoon in bed resting. I am concerned that my schedule this week will not allow enough rest. Which may lead to other temper tantrums. But I won't cook another chicken in the crock pot right away.

I do not think people understand that I need more rest than the average person. I actually do not really give a rat's ass what others think about this because I do not have the patience for it these days.

We can learn from the children

I found this article written by an adult with a pediatric cancer so she was in the pediatric cancer ward with all the kids with cancer. It was an educational experience for her with her cancer avengers and the article is a learning experience for the reader.

The author, Ann Graham, moved into the pediatric ward for a year of treatment:

"Then I became one of them: No hair. Giant, treacherous scar. Wheelchair. Ever-present IV pole, and dusty-rose colored kidney-shaped bowl to throw up in. These were all outward signs of a fraternity of warriors that no one wants to belong to. They all were enduring the same grueling treatment I was -- only they were, on average, 10 years old.

This fraternity of Cancer Avengers was wise in ways beyond their years. When faced with the courage and bravery of these little superheroes, I had to give myself the "Put your big girl pants on" speech more than once.

On my first day of treatment, while I was scrolling through my Facebook feed by the fish tank, two boys next to me started discussing their Make-A-Wish requests. Adam, about 12 years old, had just returned from a rainforest trip and asked what Sam's wish was going to be. Sam said they couldn't give him what he wished for. Adam disagreed, enthusiastically conveying that any wish could be granted. Sam stood firm: It was not possible.

Well, what is it that you want anyway? Adam wanted to know. By now, I also wanted to know.

"I want normal," was Sam's answer. "I want to go to school and basketball practice, complain about my parents and homework and turn 12.""

What do adults talk about whenthey ahve cancer? They talk about cancer and obsess about it. Children are different:

"I never got depressed with the Cancer Avengers. They never talked about cancer. They talked about friends, music, sports and Spiderman. Hope prevailed in Pediatric Day Hospital."

They have hope. They are wise beyond their years.

Exclusivity of clinical trials

I think the concept of clinical trials are great. I have tried to get into several and have always been told that I did not meet their criteria so I wasn't eligible. Very frustrating.

I understand why pharmaceutical companies are insistent on their strict criteria. They want to make sure if they take a group of similar people they can monitor for effectiveness and adverse effects. If they have a very diverse group, it can be much harder to determine the results.

The FDA is interested in changing this policy and forcing companies to include patients with chronic conditions (possibly me?) in clinical trials.

"Pharmaceutical companies routinely exclude the sickest patients from studies, fearing complications they may suffer from the drug candidates, but, as a result, the studies don’t provide a glimpse of the treatment’s “real world” effect.

To counter this, the FDA recently issued a memo to its new drug reviewers asking them to work with drug manufacturers to include a broader population in trials more regularly.


“The whole point of this is that if there really are differences in response — either favorable or unfavorable — among subsets of the population, what clinicians need is to know about it, so they can either watch for them or use a different drug,” Bob Temple, MD, deputy director for clinical science at the FDA’s Center for Drug Evaluation and Research, told reporters Friday. “This adds to the information available.”"

I find it to be a shame that so few Americans participate in clinical trials but then so many are told that they are eligible. With my medical history, no one ever wants to include me. I for one am looking forward to this change.

Weight gain is a side effect of cancer.

Weight gain is the side effect of everything these days - even breathing. I am on too many medications which have a side effect of weight gain.... So here I sit in my slightly tight clothes two sizes larger than I used to wear in dire need of a drastic deflabbification project.

"People with certain cancers – such as breast, prostate and colon cancer – are more likely to gain weight during treatment due to the therapies used to combat their disease. Hormone therapy, some chemotherapy regimens and medications such as steroids  all can cause weight gain, as well as water retention."

THEY  DIDN'T TELL ME THIS WHEN I WAS DIAGNOSED! Well there was a lot they didn't tell me - or that I didn't want to hear. But it is much harder to lose weight after breast cancer while still on hormone therapy.

And I am also on all sorts of other medications for my other ailments that might cause weight gain. I do go to the gym three times a week so its not as if I just sit around all the time.

And of course we need to remember:

"Some studies of cancer patients have linked obesity to an increased risk of recurrence and death in several common cancers, including breast, colorectal and prostate cancer. The California Teachers Study, led by City of Hope’s Leslie Berstein, showed that being obese was associated with a significant increase of dying from breast cancer for many women." More on this here.


So your treatment makes you fat and your fatness makes you more likely to die from it. So obviously something is wrong with the treatment. Does anyone see any irony with this?

The real question is if I went off the medications that might cause weight gain, would the weight magically disappear? I think that answer is a big fat no. Damn.

Prescription drug commercials

Doesn't anyone wonder why we have to put up with the warnings on drug ads and commercials? The FDA is considering shortening these lovely side effect lists that we all like to make fun of.

I have a better idea. Why don't they ban direct to consumer advertising for prescription medication. I found out that it is illegal everywhere except the US and New Zealand. So why can't they just get rid of it?

"Those who dislike the practice, according to ProCon.org, might argue that the money spent on advertising is passed on to consumers. Ads cause people to pick medicines based on the effectiveness of the ad rather than the effectiveness of the medication, and ads cause patients to desire and request medications from their doctors that may be unnecessary, thus leading to an over-medicated and unhealthy society. Those in favor of these ads argue that consumers should be informed about medical conditions and therapies, and the ads even help to de-stigmatize certain conditions. The ads might even be said to help demystify medical treatment and doctors themselves, who should not be seen in such a powerful, almost godly light."

The argument that some people will pick medicines based on the effectivness of the ad not the medication is valid. But I will agree that the ads might help de-stigmatize certain medical conditions. Who remembers being embarrassed in elementary school when your mother would write a note that said you had 'diarrhea' and had to stay home? Now we can blog about cancer and not piss off most normal people (a note to the British blogger).

Lets just say they spend $5 billion (with a b, not an m) in direct to consumer advertising each year. What if they applied that tiny chunk of change to lowering their prices? They also spend another $20 billion promoting their products in other ways - this would be maybe (and I am speculating here) conferences, speaker fees, packaging, market research, and more.That $20 billion could also help reduce medication costs.

This is all my opinion but I don't think those ads have ever helped much - just confuse everyone with their side effect lists. And allow the creative ones among us to create endless spoofs. If they are becoming a joke in popular culture, that might give you an idea of how well the ads really work.

A Post on the Olympics

My blog wouldn't be complete with out a post on the Olympics. At this point, I am waiting for the gamesmaker or Professor Dumbledore to show up and a few deatheaters hanging in the shadows.

I have seen all the pictures of the tiny athlete village beds, the athlete stuck first in the bathroom and second in the elevator, and the nasty colored water which I wouldn't want to use to flush the toilet, never mind personal hygiene.

I have sort of followed the events - I simply do not have that much time in my life to watch that many sporting events.  I have watched a few things that I find interesting and rarely seen.

But what I do miss about them, is being able to do many of the sports that they show. I must say I have never been anywhere near as good as any Olympian or other professional but I could  hold my own for many of them.

I have cross country skied, I have down hill skied, I have even run the gates a few times in slalom and giant slalom. I did like to ski the moguls but was not into losing contact with the snow for jumping. I used to ice skate and spent many hours in a practice rink. I was in shows but not in competitions. I also used to snow shoe, winter hike and all those things that involved being outside in the snow.

February 1, 2003 was one of the last days I went down hill skiing. I remember the date because the space shuttle crashed and we would learn little details from each other on the chair lift. I had a great day of skiing but my right knee with its partially torn ACL and my then boyfriend now husband both protested the event. I greatly curtailed my down hill adventures after that.

I continued my cross country and snowshoeing through the following years with my boyfriend/husband. A badly sprained ankle three miles into the woods of NH didn't help my body any.

Five years and two weeks ago was my last attempt at significant winter adventures. My husband and I headed to an annual trip outside Lake Placid in the Adirondacks. On the way out of the woods, my back would give me so much pain I was doubled over and had to head back.

Now my adventures are limited to short snow shoe treks from the house. With RA and fibromyalgia and back issues combined with everything else, has turned me into the viewer and not the participant. I have gotten rid of much of my outdoor sports gear as I realize that I should not physically even try any of them due to potential danger to my body and increased risks of falls because of my ailments.

However I wouldn't mind a few deatheaters flitting on through combined with the gamesmaker who could throw in a few twists to make things more interesting. But between pouring rain, fog, and 60 degree temperatures I am not sure the Olympics need anything more.

I'll keep watching. I'm not sure when they even end. I just know they go on and on and on and I can watch them until they end....

A weekend of eating badly ends

We eat healthy as a rule. We have lots of fruits and vegetables. Breakfast and lunch includes a piece of fruit for both. Dinner always has a green vegetable and salad. We eat fish and chicken. We do all the right things.

This weekend we did not. Friday night for Valentine's Day we had a picnic dinner of cheese, pate, and smoked salmon. I meant to cut up a pear to go with it but forgot. Saturday we met friends for a late lunch at a burger place. I had a grilled chicken sandwich but did eat fries and onion rings. We never had dinner Saturday night because we were too full.

Yesterday we celebrated Valentine's again with a fancy brunch at a restaurant which featured lots of seafood, salads, and the basic breakfasty things. We both felt like we overate again. We didn't have dinner again.

Today we are starting over. We had a nice healthy breakfast - I even had a banana. Lunch will be left over roast chicken something with fruit. Dinner will be left over roast chicken something else with green vegetables and Israeli couscous.

Its amazing how eating too much over all and eating rich food at all can make you feel like crap. I had issues with indigestion all weekend. I didn't feel right. Blach!

I hate to think what all this did to my body.... Never mind fat grams, calories, salt, carbohydrates and more.

But I do not think any of that greatly destroyed my health any further than it already is. And it was kind of nice to eat delicious non-healthy food for a few days.

Being rebellious

We all have the desire to run away and join the circus or drop everything and take the day off for fishing/skiing/golf/shopping. I usually go from required space to required space and not whine too much. My life is focused on these places: my job, my house, the hospital for doctor appointments, and the gym with side trips to the grocery store, see my parents, and occasional other events.

Recently I have been feeling over tied to my house and the hospital. I have been stuck at home because of the weather and car problems. I have been at the hospital too DAMN often recently.

On Tuesday morning I have a doctor appointment - where I break in a new doctor - and on Thursday I have a dentist appointment and get some fillings done. I really do not want to have any medical appointments this week or any time soon. Unfortunately the doctor on Monday should probably turn into additional appointments that will give me some relief in some areas.

Between those appointments and a few other obligations I will squish in my job and hope there are no more DAMN snow storms to keep me stuck at home.

What I really want to do is be irresponsible and do something fun. Today we are going out to a fancy brunch for a belated Valentine's. I feel like all we have done this weekend is eat. Tomorrow we hope to retrieve the car from where it broke down on Friday and have no other plans. My inner rebel allows me to think of irresponsible things to do to get outside.

This may include going to the beach. Yes we just had several snow storms back to back but I really could use a walk on the beach. It is not covered by snow because the tide removes it. But the tides are wrong so I need to rethink that. Or I can take my dilapidated body outside and go snow shoeing which invariably leads to pain and whininess.

My inner rebel is going to get me in some kind of trouble with my self I can tell. I'll rebel and do something I really shouldn't and then pay the price with pain and whininess. But I need to do something!

Young adults and cancer

I read an article on the Atlantic about the plight of young cancer patients. First of all, please do not use the word 'plight'. A plight is defined as: a condition, state, or situation, especially an unfavorable or unfortunate one. To me its another one of those sneaky, snarky labels with negative overtones. And the article also calls them survivors which is not my favorite term as well. A double negative for me.

Yes, life sucks after a cancer diagnosis. Particularly if you are younger and there are no others around with cancer to help you cope. I was one of them and I do not think that I had a plight. I had a life to live and figure out.

After cancer at any age, you are left with a mangled body, soul, and finances. I was luckier than most as my cancer did not require chemotherapy at age 19. My finances were covered through my parents' health insurance but I had the body and soul of a cancer patient.

Well back to the article. I did like it. I did like the information provided about the issues a young cancer patient is left with. If some one at age 20 is diagnosed with cancer, in addition to everything else, they are left with deciding what to do with their future. Maybe they were in college and were planning a career, now they have to decided can they finish their studies as previously planned and then go on with their career.

What about dating and children? Would a potential partner be turned off by their scars and medical history? Are they now damaged goods in the dating world? If you are diagnosed at age 60 which is somewhere closer to the average age at diagnosis for most, dating and children are no longer an issue.

And finances - take your average post college debt and add on top of that medical bills. Where does that leave the young adult with cancer starting their life after cancer?

Finally, how do you repair the damaged soul of a cancer patient? I can tell you it can take a very long time before you want to open up and talk about your medical crap with anyone - even a therapist. Healing is difficult, long term, and deeply scarring.

So next time you see a teenager or 20 something at the oncologists office, think about what they are going through and where they are starting the rest of their life. How do they get a to a new normal for their adulthood if they never had one in the first place?

Little bits of happiness in the medical worlds

The medical world does not need to be sterile and boring. Most waiting rooms have big screen tvs now. Chairs are comfier. They are trying to relax the patients a bit more.

I have been taking a family member for treatment to an area at the hospital where I haven't spent much time in a few years. I have noticed they are expanding the creature comforts for the patients and their family members. There is art. There is a lending library. There is saved seating. There is free coffee. Just nice little touches for long waits.

Then I saw this online:

A bunch of young men were seen running around a parking garage roof which is visible from the ICU rooms and oncology rooms of a Chicago hospital. I got a kick out of it. Apparently patients and providers a like did as well for its short life.

Engineering students made thousands of paper cranes for a hospital in Florida... The images are lovely and can be seen here.

While spending too much quality time at a medical facility, its nice for a little peek at something soothing or amusing.

A (Short but) Very Stressful Trip on the Cancer Rollercoaster

Yesterday I went to have my annual check up with endocrinologist. When I first saw her about five years ago, I was sent for a baseline thyroid ultrasound because I hadn't had either an ultrasound ever or an endocrinologist in a very long time (decades?). Big surprise there when they found a 'something' in the thyroid bed where the thyroid used to be but wasn't supposed to be anything.

We started following it with ultrasounds to see what it was. It was clearly in the evil category of 'big enough to see but too small to do anything about'. So six month and then, as its stability became established, annual ultrasounds were the result.

I ran into friends entering the hospital and then was a little late for the ultrasound but still had to wait a few minutes. I didn't have any great expectations of issues with the ultrasound. They finally called me and I went in for my turn. It met my expectations of no problems. I went on to my endocrinologist appointment to get the results and talk about my thyroid or lack of.

While in the waiting room, I ran into another friend (see what happens when you are a frequent patient - your social life happens at the hospital?) and we were chatting away. Then a doctor showed up in scrubs and asked the front desk attendant for me because of the innocuous reason that 'the doctor needed more pictures'.

My stress level grew. Immensely. No cancer patients ever want to hear that. They sent me back to the ultrasound waiting room for a few minutes and my stress level continued to grow. I was the only one in the waiting room - me and my mind which quickly goes down that evil little road to hell.

After a few minutes they called me in again. Another tech started another ultrasound and would only tell me that 'the doctor had requested more pictures'. After a few minutes of clicking away on her screen and squishing the side of my neck with the stupid wand thing, she left to check with the doctor to make sure they had enough pictures.

My stress level grew some more. I was in tears.

The attendant came back with the supervisor/instructor. They resumed the ultrasound and whispered away while clicking and and pointing at the screen. I was more stressed.

Finally they decided they had enough pictures and sent me and my kleenex back to endocrinology where I was greeted with 'there you are - we called you and you weren't here even though you had checked in'. I was told to take a seat, no they would take me, not sit, no go in. Eventually they said go in. The nurse said she had forgotten I was sent back over to ultrasound....

She stuck me in an exam room and attempted to take my blood pressure. I have no idea what it was but I bet it was a bit high. I stressed.

Then the doctor came in and apologized and said everything is fine. She told me to take a few deep breaths. My stress level started to go down. She told me she could not imagine what I went through as even she was very surprised to learn that I was sent back to ultrasound. She wasn't the doctor who wanted more images, it was the radiologist so she was surprised as well. My stress level went down so more.

What happened is that the evil little something they were following was not found in the first ultrasound. The tech measured something different which was a completely different size. They had to go back and find what the first tech had measured and then to decide that the evil something was no longer there. Great big sigh of relief. That was about 45 minutes of sheer hell on my part. Then I went to the gym to finish destressing.

I do not blame the techs as they were doing their job and I do not expect them to tell me what they see as the doctor needs to put it in context. I'm just glad I had the results of the ultrasound about 10 minutes after it ended.

This is a day in the life of a cancer patient. Every test no matter the expectations can quickly go to hell in a hand basket. If you haven't walked the walk, you have no idea what its like.

Winter weather interfers with medical needs

If you ask any medical professional, they will probably tell you that they are essential personnel and  when the governor or someone else important decides non essential people get to stay home because of the weather, they do not - the same as for police and fire. They will be at their appointed place all day long through rain, sleet, snow, etc. The hospital is always open.

Patients have a slightly different perspective. If there is a snowflake or a rain drop they may change their schedules. Usually it does not make a difference. No big deal, an appointment is rescheduled for a slightly later date. The only time this is a problem is when the next available appointment is 90 days or more out. Or when you are in the middle of a series of treatments at scheduled intervals. Like me.

I have had two out of three in a series of Synvisc injections on my left knee. The last one is scheduled for 3pm tomorrow. No big deal? We are expecting another storm tomorrow. This is what they are telling us will happen between 7am and 3pm.

It will start as snow, switch to rain and then back to snow. I live right behind the 5 in the 5.1" prediction for Boston.

So Friday morning I will get up and deal with freezing temperatures and solid glaciers in the front yard to go drive to another (damn) appointment. 

It really isn't that much snow. It is the problem of six plus inches of snow with an inch of rain on top, and then snow again. And we live on a hill. A short but very steep hill.

I don't mind driving in the snow and ice. I am concerned about other people and their driving. I really do not want to cancel/postpone either of those. But I may be whiney about it.

How rude, tasteless, insensitive and completely stupid

The UK based Pancreatic Cancer Action recently ran a series of ads saying such lovely things as "I wish I had breast cancer". Please close your mouth if you are gaping at this.

And the woman in the ad says she would do it again.

How bad is this? Let me count the ways.

1. The organization claims it is hard hitting on purpose - a shock campaign to raise awareness. Well tough cookies. I know you want to be hard hitting but you could do it with out being offensive. And rude, tasteless, insensitive and completely stupid. Where were your brains people? Where was your reality check on your ad campaign?
2. The woman in the ad says she would do it again and has no regrets. I'm sorry you have pancreatic cancer and a short time to live. But you could have gotten the same diagnosis and prognosis with breast cancer. 
3. This is a nice clear example of how the pink ribbon campaigns and awareness have frivolized (if that wasn't a word, before it is now) the real severity of a breast cancer diagnosis. Cancer is cancer. And even if you paint it pink and put a little ribbon on it, its still cancer.
4. No cancer is better than any other. I have had two 'good' cancers if you must (but really please don't). There is no good cancer. Stop comparing them.

 This gets the tasteless and insensitive award for 2014 from me.

Who reads your blog?

This is a real question. I started writing my blog to keep my family and friends up on my cancer adventures in 2007-2008. Very few of them every read it. I know my mother reads my blog. An old family friend who lives in France reads my blog. The rest of my family to the best of my knkowledge does not read my blog.

My husband does not read my blog unless I prod him but his point is that he is living it so I give him a lot of slack on that.He usually knows more about me than my blog does.

Of my closest friends, one who lives far away, reads my blog regularly. I have one good friend who lives locally who reads my blog regularly. Most of the ones who live closer do not read my blog. Its not like I talk to them any more often than I talk to the one who lives far away.Every so often, I find out that someone else I know reads my blog. Some facebook friends read my blog too.

I'm not complaining. I'm analyzing and thinking - even though its early in the day.

My intention was to have friends and family read my blog so I wouldn't have to write emails or answer calls on my on going cancer adventures. That did not work out.

My daily writing has helped me developed a coping mechanism where I am journaling my life experience through on going medical disasters. Since its not my friends and family who read my blog for the most part, it is my impression that the other readers consist of other bloggers, cancer friends who I have met online and complete strangers.

At first I was a little bit frustrated by the fact that my intention not to have to call and email people updates didn't work. But now I really do not care. If they say they are my friend and don't bother to ask me about my health and they know I have issues. Are they my friend?

For most people who breeze in to my life and call me up and ask how I am doing, I give them a vague answer because honestly its too complicated to answer a single question. What part do they want to know about - my latest developments, my RA progression, my fibromyalgia stability, my last blood work, my upcoming tests? Its not a one sentence reply.

So the people I had hoped read my blog do not. There are  many people who read my blog and give me feed back. Sometimes posts get picked up here and there and more people read them. But that's okay. So who reads  your blog?

My cat doesn't understand me.

Many people may say 'my spouse doesn't understand me' or 'my family doesn't understand me'. I am an exception - well I always was a rule breaker so I'll always be the exception, never mind all my health crap.

First I need to state the cat was in no way harmed by the writing of this post. I was pestered to nearly to death from my point of view. The vet just said his blood work is very good and he should be good for another 19 years. Yes, 19 years. My husband does understand me pretty darn well (sometimes its scary). Its just the cat.

You say, train the cat. Have you ever tried to train a cat? They are above that. Have you ever tried to train a deaf cat? A deaf, mostly blind cat? A deaf, mostly blind, cat who is 19 and can't smell either? Its not possible.

There are two human beings who live in this house. The other human, my husband, owned the cat before I cam along and he proved he is capable of feeding the cat. Now, the cat insists I be the one to feed him. If I want to sleep in, the cat wants breakfast around 7am - I should feel privileged - in his younger years the preferred dining time was 5 am.

Once my husband heads downstairs, he waits about thirty seconds before he tries to figure out if I am awake. He will come over and look at my face. He will walk across me. He will settle down on top of me.When the cat wants, he sleeps for hours on end. When he wants something he has no problem waking me up.

The problem is my cat doesn't understand me. Here are the issues.

I need sleep in my life. Uninterrupted sleep. Uninterrupted sleep without being poked, prodded, or walked on by the delicate 15 lb pointy paws of the cat.

I have multiple ailments which cause things like fatigue, insomnia, and require sleep for healthy healing. He disagrees. I am supposed to live my life the way he wants.

Right now he is standing on my right shoulder with his front paws and his back paws on the pillows behind me. This is slightly better than when he stands on my left shoulder which has more pain issues. I can stand this for a few minutes before I shove him off.

He likes to sleep on my knees which I keep elevated by a pillow so my back is more relaxed when I sleep so I have less pain. He squishes my knees down making my knees compress and makes my back hurt. So I wake up in pain. Without enough sleep. That makes me cranky.

He just doesn't understand me and will continue to stand on my shoulder until I get up and go feed him.

A very unsettling conversation

Yesterday, as part of my day to myself, I dragged my sorry a$$ to the gym. As part of my getting ready ritual, I pulled on my lymphedema sleeve. An older woman entered the previously empty locker room and asked me if it was a lymphedema sleeve. Often I just say it is a compression sleeve so as not to enter the 'what is lymphedema' conversation and get into my medical history with a virtual stranger.

She looked somewhat on edge. I told her it was a lymphedema sleeve. She said she had been diagnosed with breast cancer 28 years ago when she had a lumpectomy and radiation. Then she had a recurrence 7 years ago (I am pretty sure it was 7, it might have been 4) when she had a mastectomy and more treatment.

Three weeks ago she started to get swelling around her implant and around to her back. She had had an MRI and a CT scan to make sure it was not more cancer. It was lymphedema. I believe she said her doctor called it 'sectional lymphedema'.

She wondered how she could have gotten lymphedema at such a late date for no reason. I did remind her you can get it from a little cut or injury. She replied but it wasn't on her arm and just her torso on that side. I did suggest she call and get some treatment asap as it is important to get lymphedema under control as soon as possible. She said she was going to call her doctor back later in the day.

Then we both went our separate ways.

Later I started thinking.

First of all a recurrence over 20 years after the first diagnosis. Crap.

Second of all, lymphedema 28 years after the first diagnosis and 7 years after the second surgery. Double crap.

You start to get comfortable with a cancer diagnosis. And then whammy. You find out about late recurrences and it all becomes a little too close to home. Triple Crap.

That brief conversation gave me a lot of food for thought and was very unsettling.

A day to myself

Even though I work part time, I seldom have days to myself. I usually am running all over with volunteer work, errands, doctors appointments and whatever. I did stay home on Wednesday this week but that doesn't count. There was a blizzard and I couldn't go anywhere. And my husband was home so I spent time with  him. Not that there is anything wrong with spending time with him but it wasn't a day to myself.

Today I dropped my husband off at work because the car is being worked on. Now I am up early and have time to do the things aI want. I will go to the gym on my own schedule. I will deal with the garage and the car repair and I will pick up my husband later. But for most of the day I am here, by  myself - well with the cat - to do what I want.

Next week I believe I have three days with doctor appointments. And I have to get to work four days because of the blizzard day this week. I am not looking forward to next week.


But that is next week and I'll stick with this week first. I will enjoy reading the paper with my feet up and sipping tea. And focus on me for the day. Although I am really in avoidance of next week.

A cancer diagnosis is not time to start using the past tense

Yesterday Curt Schilling, former NBL player for the Boston Red Sox and elsewhere, announced he was diagnosed with cancer. He did not say what kind of cancer nor his prognosis, which is really no one's business but his own.

And the media immediately started using the past tense when speaking about him and eulogizing him.

Hello! A cancer diagnosis is not the time to start putting someone in the ground. It is a time to give them respectful privacy so they can deal with their illness and its treatment.

According to this morning's news, he is 'dealing with a health crisis'. Well, yes its not a good thing but let the man have some peace while he copes. And he's still here.

Tips for surviving cancer

Here they are for the 20 somethings and the rest of us.

1. Surround yourself with good people.
2. Buy yourself something special - besides a cancer wig. I have a nice fancy watch as a treat after chemo was over.
3. Play that cancer card...
4. Expose yourself to meaningless and funny entertainment.
5. Keep it real, you have a right to feel shitty. And if you are with good people they will  understand.

 Life is too short not to make it as enjoyable as possible.

World Cancer Day

Today, February 4, is World Cancer Day. The target of the day is to Debunk the Myths surrounding cancer.

World Cancer day started a few years back. They presented signatures to the United Nations in 2011 with the goal by 2025 of:

There will be major reductions in premature deaths from cancer, and improvements in quality of life and cancer survival rates.

I like their way of thinking. They set up a list of targets and this year is to Debunk the Myths. You can go to their website and see more details on the myths and their other targets.

To show your support for this day, if you had cancer you are supposed to wear purple. Hmmm.... Isn't that labelling? I hate labels. I am not the S-word. But I want to show my support.

Today I am taking a family member to chemotherapy so will be hanging out in the oncology department. How much purple will be there?

My compromise is a purple patterned shirt and purple undergarments. Am I a weenie? I'm not sure. I just hate the labels.

I digress. Today is World Cancer Day.  Show your support by learning more about it and seeing what you can do to help.

I was wrong

When I blogged about 'Blogging About Others' on Saturday, I was wrong. I misinterpreted Frances' post. I didn't mean to. Maybe because it is such a touchy topic for me that I misinterpreted it. I got negative feedback from both Frances and another reader. I did go back and clarify my blog post and posted an update as well. This is something I never do. I usually let a post stand as it is without editing.

I do not claim to be perfect. I know I can be critical of others - particularly those who piss me off - but this was not the case. In this case, I was just wrong and I apologize.

Stem cells anyone

I am not a biochemist or anything, nor am I a medical professional. So I do not pretend to understand everything about this kind of scientific stuff. But I do realize this is a major breakthrough.

Someone discovered how to make stem cells cheaply and easily.

The genial 63-year-old anesthesiologist who left stem cell scientists shaking their heads in wonder and puzzlement last week, with the discovery that a simple acid bath could be used to generate powerful stem cells, doesn’t even have a PhD.

I read about this earlier this week when I read this article that said it was essentially a 30 minute acid bath and voila, stem cells.

From the little I know, I still consider this big news.

But also it shows how research can go in the wrong direction for years and for billions of dollars. Not just for stem cells but for anything. It just took a new pair of eyes to figure out what other people had been trying to figure out for so long.

Now we need more progress....

Blogging about others.

I blog about myself and my oh-so-healthy-body. I don't really blog about other people and their stories. I mean I occasionally whine about a co-worker or a doctor or a rocket scientist that did something earth shattering utterly stupid. Crooked politicians, medical researchers, and scammers also hit my blog once in a while.

But I do not blog about other people and their medical ailments. I have family members who have their own health problems. But that is their story too tell. Its not for me to tell.

But Frances over at Hospice and Nursing Homes Blog writes about blogging as a way to share experiences, about their health problems or life and about others when they are terminally ill - as a way to cope.

I do feel it is their story to tell. Also, if all of a sudden I started blogging about another's health and someone who knew the family member but not about their ailment would find out about it through me and not through the patient.

Am I making sense? Sometimes I wonder. I believe that if you get an ailment, unless you are under 10, you should take responsibility to tell who you want to know. There is a line of privacy. Imagine if you are a high school student and you get diarrhea (a moderately embarrassing ailment at that age), do you want anyone to know? Should your mother's note say - he was sick and couldn't come in. Or should it spell out the intimate detail of mad dashes to the bathroom?

The same thing goes for the rest of your life. Its your body, you get to decide who knows what. I don't want to be the one to tell. If someone wants to write about your ailment and you don't want them to, they should start a private journal and not share it. That's their problem and not yours.

And its your choice to decide when and if to tell your story. I think I blog about this a lot but I think its important to me as well....

2/2 - I'll add an update and a clarification based on Frances' comment below. The way I read her blog post was that blogging about others illness is a way of coping. From my point of view I would never write about another.