Wednesday, May 24, 2017

Managing Fatigue

Do you remember how tired you felt during chemo and at the end of radiation? That's how tired I feel every day. As a result, my new word of the year is 'no'. As in:
  • No, I am not going anywhere
  • No, I can't go there tomorrow
  • No, the only places I am going are the ones I carefully planned.
Nothing else. If you want me to do something with you, we need to plan ahead. (Unless an emergency and then I am happy to help.)

I cannot drop things and go to the movies or visit someone. I plan what I am going to do and then I plan how long I have to rest and recover.

Yesterday I had a fairly normal day and met a friend for lunch (and gave a neighbor a ride in an emergency) but then didn't sleep that well last night so it took me a couple of hours to get my butt out of bed. After I go to the gym and stop by my parent's house, it will be a lazy day for me. Nothing more. If I feel energetic I will set up my loom while sitting in front of the TV watching LMN movies...

And no, I am not up for any more.

Managing fatigue takes a lot of work. It takes planning and thought. I know I have obligations but I work carefully to manage meeting them. Just because I no longer work, it doesn't mean I have spare time for fun stuff. Any spare time goes to doctor appointments.

I think I sound really negative here but I often feel pressured that I am letting people down and can't get together as much as both of us would like. I'll just keep practicing the word 'no' and hope I do not offend.

Tuesday, May 23, 2017

I Keep Forgetting To Blog

I mean to. It really helps me cope with life. I will say the road to hell is paved with good intentions.... so maybe I am on the way to hell in a handbasket.

But anyway, there is a lot going on in my life right now but I am not ready to talk about it yet. I will, when I am ready. Its not my story to tell either. I will eventually get to it.

My biggest distraction in life right now is that it is gardening season. My abilities to garden are very limited but its one of the things that I really enjoy. I can't did things up, move anything heavy or even garden for very long.

This year, my husband built me a massive raised bed garden with a five foot fence to keep out the predators - deer, fox, bobcats, skunks, etc. The cats are better at small predators than large ones. Last year, he also built me a huge flower garden.

I really enjoy gardening, but I said that already. I have been having fun with my vegetable garden and my flower garden. I have lots of little baby vegetable plants so far. I failed at starting vegetables from seeds. I mean I did start them, managed to kill half of them, forgot to label some and I can't tell sunflowers from cucumbers and zucchini to date.

This is my favorite time of year and I am very happy to be distracted by gardening. I would much rather stress about gardening than my health or any medical issue.

In the meantime, I will try to remember to blog.... but I am heading for the garden in a few minutes.... because its another day.

Saturday, May 20, 2017

New News on Lymphedema

Lymphedema has long been known as a life long complication from breast cancer surgery.

I am not a doctor but here is my understanding of lymphedema: the lymph system is a second system in your body connecting hundreds of lymph nodes which help clean out your body and heal injuries or diseases. When you have surgery the lymph system is often impaired because it does not heal and reconnect after. If the lymph system is unconnected to the rest, you can end up with swollen body parts, or lymphedema.

After breast cancer if a bunch of nodes are removed under your arm as with an axillary node dissection, you can end up with problems. In previous decades when a radical mastectomy was routine treatment for breast cancer, lymphedema occurred regularly for patients. Now they skip start with the sentinel nodes which are assumed where breast cancer starts to spread and then only if they are positive, do you get an axillary node dissection.

What they told me is that if you have an axillary node dissection the chances were high of getting lymphedema. I was told that do not strain your arm, no shots or needle pricks, or blood pressure cuffs, no purse straps over your arm, no, no, no, no, no.... Basically baby that arm for the rest of your life. I do regular exercises at the gym but I do them at lower weights than my right so I don't strain it. Blah, blah, blah, blah....

So with me, I had one tiny positive node in the sentinel node so I had an axillary node dissection after my lumpectomy. Then I had chemo and radiation. Then I followed all directions and was fine, until I fell the following winter and used my left arm to break my fall. And voila, lymphedema (and no its never goes away).

But now there is new information on lymphedema. I got this from Barbara over at Let Life Happen where she wrote about "Debunking the Lymphedema Risk". There was a recent new study done on causes of lymphedema.

"The study found that chemotherapy, more advanced disease and greater than normal body weight significantly increased the risk of lymphedema for patients who had surgery of lymph nodes under their arms to assess the spread of cancer. Radiation therapy also strongly correlated with lymphedema for patients undergoing axillary node dissection (ALND), the more invasive form of axillary surgery.
"“Lymphedema rate was significantly lower among patients undergoing axillary surgery without these additional risk factors,” says study co-author Judy Boughey, M.D., FACS, professor of surgery and research chair, department of surgery at Mayo Clinic. “We must recognize that today, breast cancer is no longer a disease treated primarily through surgery, and many therapies impact the risk of this chronic condition. Risk factors appeared to be cumulative, affecting women in a step-like fashion.”

So this was my chronology with my stage II breast cancer: lumpectomy (June), axillary node dissection (July), chemotherapy (August through December, lumpectomy (December), radiation (late January through early March). I was normal body weight before breast cancer. After breast cancer about the same. My weight gain came later.... So I did not have advanced disease nor overweight but I did have chemotherapy and radiation.

Nevermind me, I just find it very interesting that the sole cause was not the surgery but the combination of surgery, radiation, and chemotherapy. 

Friday, May 19, 2017

Those Nasty Complications

I often wonder in cancer treatment, which is worse - treatment or complications? I think complications win that one. To me complications mean more doctor visits, more drugs, more expense, more whininess, and less happy results.

In recent years, we have had the whats-her-name effect (this is what happens when you blog too early in the day) where women are getting bilateral and unilateral mastectomies at higher rates than in the past. There is no real proof that mastectomies are better than lumpectomies with radiation for early stage breast cancer but many women opt for them anyway.

But there is a problem. New research (because we always need new research) shows that more often mastectomies are often accompanied by side effects and complications.

"Researchers identified 105,211 women with early breast cancer diagnosed between 2000 and 2011 and identified treatment complications within 24 months of diagnosis and compared complications by treatment. ...

"Lumpectomy plus whole breast irradiation treatment was the most commonly used treatment. Mastectomy plus reconstruction was associated with nearly twice the complication risk of lumpectomy plus whole breast irradiation treatment (54.3% vs. 29.6% complication risk among younger women with private insurance and 66.1% vs. 37.6% complication risk among older women with Medicare) and was also associated with higher adjusted total cost (an average $22,481 more for younger women; an average $1,748 greater for older women with Medicare) and complication-related cost (an average $9,017 greater for the younger cohort; $2,092 greater for the Medicare cohort). Brachytherapy had modestly higher total cost and complications than whole breast irradiation treatment. Lumpectomy alone entailed lower cost and complications in the Medicare cohort only."


And what do side effects and complications mean? More doctor appointments, more treatment, and more costs. I don't know about you but honestly, in addition to better health, I am all for fewer doctor appointments, less treatment, and less cost.

If I could go to one doctor once a year and get treated for everything all at once, I would be much happier. But since that isn't going to happen, I still want the fewest visits possible. 

If I am given a choice of two treatment possibilities. One has less invasive surgery but would require additional treatment and the other has more invasive surgery but no additional treatment, but has a higher risk of more complications? I think I would always go for the less invasive ones that requires more treatment.

More complicated is never better.

(Whats-her-name is Angelina Jolie. I think I finally woke up.)

Wednesday, May 17, 2017

A Well Explained Reason for Ditching the S-Word

I hate the S-word. I am not an s-word. I am a person living with cancer. Its always just bugged me. A lot. I hate the fact that ACS designates anyone who has been diagnosed with cancer as an s-word.

But finally I found someone who really explains it well as to why you should ditch the s-word. I was catching up and finally reading a copy of Readers Digest from last September and came across an article called "Don't Call me a Cancer Survivor". The author is a hospital chaplain for the last three decades or so and was diagnosed with breast cancer in 2005. With her diagnosis she learned a lot.

"One surprising thing I found was that only a small part of the cancer experience is about medicine. Most of it is about feelings, faith, losing and finding your identity, and discovering strength and flexibility you never even knew you had. It’s about realizing that the most important things in life are not things at all, but relationships. It’s about laughing in the face of uncertainty—and learning that the way to get out of almost anything is to say “I have cancer.”"

Upon her diagnosis she was instantly given pink ribbons, told about the upcoming walk, luncheons, and more. Someone actually told her that her cancer diagnosis was her 'wake up call'. (She wanted to hit him but couldn't because it was right after surgery. I would have hit him for her if I was there.)

She realized that being a cancer s-word was taking over her life.

"That’s when I told myself, “Claim your experience; don’t let it claim you.” We know that the way to cope with trauma, loss, or any other life-changing experience is to find meaning. But here’s the thing: No one can tell us what that meaning is. We have to decide what it means. And that meaning can be quiet and private—we don’t need to start a foundation, write a book, or work on a documentary. Instead, perhaps we make one small decision about our lives that can bring about big change."


She did move on and became happier. As part of being a chaplain she sat with many cancer patients through their treatment. She also got to see her former patients later to see how they were doing. She met with one woman and her daughters to learn that she was now NED. She started telling her story of diagnosis and treatment again and that emotional roller coaster.

"At that moment, her daughters stood up and left to get coffee. I handed the woman a tissue and gave her a hug. Then, because I cared for her, I told her, “Get down off your cross.” She said, “What?!” I repeated it. To this woman’s credit, she was able to talk about why she was clinging to her survivor identity. It got her attention, and people took care of her, for a change. Now it was having the opposite effect and pushing people away—they kept leaving to get coffee."

That is exactly my point. An s-word is not a person. Its a label. It might help you get through treatment but its not you. Let yourself deal with the experience and go on with life. Do not let you become someone who you aren't.

Tuesday, May 16, 2017

Ignore the Statistics

Once again I have been faced with explaining that a 3% death rate does equal a 97% survival rate. Often cancer patients are given numbers which they do not understand and they focus on the bad part.

First of all, you are not a number, you are a human being.
Second, numbers are generalizations.
Third, numbers should be ignored.

Finally, if you must look at numbers look at the positive side of them. Its not a 5% death rate, its a 95% survival rate. That sounds much better.

Sheesh....

Sunday, May 14, 2017

Declining Health Abilities

Yesterday, a friend and I went to the NH Sheep and Wool Festival. We are knitters,weavers, etc and bona fide yarn junkies so it was the perfect trip. However, we got exhausted. We even went and napped in the car in the afternoon so we could make it to the events we wanted to see.

On the way up, we talked about our declining parent's health. Her father is in his early 90s, my parents are in their late 80s. All of them have physically declined over the years, as would be expected for their age, but mentally are going fine.

This morning the two of us feel beat up and are exhausted after yesterday's walking and sitting. And napping. Today we are feeling closer to our parent's ages than our ages (37 still in case you are asking). I slept a solid 10 hours last night and that helps me a lot to get through today.

Days like this make me realize how much my health abilities have declined, similar to my parents. But I feel it is more expected for them than for us.

I am not trying to run a marathon, something that I have never dreamed of doing, or even go on a 15 mile hike as I have in the past. I am talking going for a day of fun which included more sitting than walking.

I realize I am getting older but I think my brain thinks I am 37 but my body thinks I'm 80. And its just not fair.

Wednesday, May 10, 2017

Losing Track of Time

I haven't worked really in a year and a half. I have no reason to watch the clock very much - except for doctor appointments. I never look at a calendar. I have to think to figure out what day of the week it is - and am often wrong.

I completely lose track of time.

I was talking to a friend yesterday and she said that her problem she couldn't remember anything. I never can remember anything either but I find losing time is more important. Priorities I guess.

This also causes me to forget to blog.

Maybe I should try wearing a watch again. But I can't because of lymphedema and RA.

Sunday, May 7, 2017

Taking Charge of My Medical Crap - Again

I try to be in charge of my medical care. I really do. I take notes at appointments and I write little notes to myself in my calendar on things to ask my doctors at each visit. I am not sure if I am weird for doing this or not but I have no brain so I can't remember anything.

In recent months, I have a new pain management doctor who has been very good at talking to me about different pain medications and what are options. I am very happy with this. Basically he is helping me switch to new medications to replace the ones that I have with ones that work better - fewer side effects, reducing the number of medications I am on, and focusing helping me. I really like this (and resent my old doctor who just gave me more medications and more medications.)

After my most visit with him this week, I am now energized to talk to my other doctors about the number of medications I am on and how they work. The next two doctors who prescribe the most meds are my meds therapist, who I see this week, and my rheumatologist, next appointment at the end of the month. I want to review all my medications and see what we can do to get rid of ones I do not need or find better alternatives if available.

I often run into problems finding medications to treat basic things such as needing antibiotics. Because of my allergy to penicillin and my other medications, I am very limited in what is available to me. Maybe with changes, I could actually get treated when I need it.

But anyway, I want to talk to my rheumatologist and meds therapist to see what we can do. I also want to take a personal inventory of current issues and decide what I should ignore and what might actually be treatable. I feel I need to do this because I have so many issues and I rarely see my PCP. I need to be organized before I see her in September so I am in charge when I see her.

I think I need to take more notes.

Saturday, May 6, 2017

A Rerun: Helping People With Cancer

I know this is a popular subject with people with cancer - how and how not to help them. Some people are idiots. I can tell you story after story about ones I have met along the way.
  • You aren't going to get cancer by mentioning the word 'cancer'. Seriously? Its an ugly word but its not an obscenity that will cause someone to pass out. You can't ignore the elephant in the room. Ask how their treatment is going, how they are feeling (but not that vague, polite 'how are you today?' bullshit). 
  • Never tell them about your cousin's neighbor's dog walker's hair dresser's sister's cancer treatment. You are not a doctor. It probably wasn't the same type of cancer, and even if it was, everyone's cancer is different. You do not want someone to start wondering about their treatment plan - or to think about how stupid you just sounded.
  • No, they probably are not about to die so don't ask them 'how long do they have?'. I find that one pretty damn rude if you ask me. And people have asked me that. I probably gave them some gaping look and meant to say 'about another 50 years'.
  • Don't be shy. You aren't to get cancer by being in the same room with them, shopping for them, eating a meal together. If you want to help them, you need to go see them and talk to them. Call first and ask 'I'm going to the grocery store, can I get anything for you?' or 'can I drive your kids to school for you tomorrow or take you to a doctor appointment?' 'Can I bring you a casserole for your family to eat later this week?' If you say, how can I help, they may not be sure what to say. You can do their laundry, clean their house, mow their lawn. 
  • Be smart. Someone in cancer treatment probably has limited energy so going to the late movie, a museum where you are on your feet or a shopping spree at the mall are probably not going to work. Nor are going out for drinks or bar hopping. Or a 40 mile bike ride. Or surfing. Or mountain climbing.... I can go on. Ask them do they want to get out and do something and let them tell you what they would like to do. 
  • Be respectful of them and their time. They may or may not be feeling very well. If you are visiting them and they appear to be either trying to stay awake or not run to the bathroom, it's time for you to leave. When you arrive, ask them if they are up for a visit or just drop off what you brought and leave. I know I would try to be polite with visitors and sometimes I really just needed to sleep and not throw up.
  • Do not visit anyone who is an inpatient in a hospital unless they tell you they can. People in hospitals are usually pretty sick, have not gotten enough sleep (because you can never sleep in a hospital), and look like crap because they are in bed, or are bored to tears. Boredom welcomes visitors; pain, lack of sleep, and looking/feeling like crap hate visitors. Call first and ask what you can bring. Do not just show up at a patient's room EVER!
I think that covers most of my irritations. Yes I have cancer. No I am not going to die anytime soon. I would love it if someone would weed my garden (my husband has a problem telling weeds and plants apart). I like visitors who call first. If I get tired, I will kick you out. Thanks for asking.

Friday, May 5, 2017

This is How Tired I Am

This morning I slept through my husband's alarm. I heard him shower and thought he was a taking a late night shower before bed. I did get out of bed for a minute and got a cup of coffee to sip while in bed. I woke up to a cold cup of coffee two hours later. It has taken me another two hours to get out of bed to my computer.

The problem is I need to leave here in another two hours and be alive enough to go to the gym and then a doctor appointment before driving home in a torrential rainstorm. I can't wait.

But I get to sleep late again tomorrow.

This is fatigue for me. I get so tired that I can't function. The reason i got so tired is that i have been running around for the last three days and got up way too early the past two days. Its not that I just need sleep. I need rest as well. Getting up early in the morning is really hard on me.

I can't stay up late so I don't try. But sometimes I just have to get out of bed too early.

My plan for the weekend: bed early, sleep late, repeat.

Wednesday, May 3, 2017

I Need A Nap

I am so tired these days. I haven't been getting enough sleep. I have been doing too much. Now that is not new but we did go away for the weekend and I have been busy all week with a bunch of things. These have involved getting up early in the morning which I am not good at any more.

This fatigue reminds me why I no longer am working and trying to get SS Disability for the past year. But all I know right now is I need a nap but I need to cook dinner and tomorrow I get to pick up my father at 7 am, meaning I have to leave here at 630 - not my favorite time of the day. I think I will take a nap when I get home.

Grrr....

Tuesday, May 2, 2017

Finding Good Medical Resources

This always amazes me. People get diagnosed with a medical ailment and then don't use the good medical resources available. If you need medical information, you need to do a little research to find the resources.

A good patient takes time to learn about any significant medical ailment so they better understand their health. If you are educated you will be less stressed and potentially handle your ailment better. You really do not want to just jump on the internet and google your ailment. That is the worst thing to do.

A good first step is to ask your doctor who diagnosed you on where you can get good information. Its their field of study so they will know where to find information. My doctor at my breast cancer diagnosis sent me to breastcancer.org, komen.org and the American Cancer Society (cancer.org). He said not to believe any information I found on line.

If you forgot to ask your doctor the question, you can start by finding where that type of medical specialty hang out on line. For example, at my rheumatoid arthritis diagnosis, I googled 'rheumatology doctor associations USA'. I ended up at the American College of Rheumatologists (ascr.us). They had a link to patient information on their front page. Then I found the American College of Rheumatology (rheumatology.org). Those two links found me lots of information that really helped me.

For any kind of cancer, I always start at the American Cancer Society (cancer.org) I do not consider any other site to provide information of any value on cancer, except for the American Cancer Institute and a few other government type sites.

Another place to start are accredited resources for general medical information. The one's I consider good are:
I do not consider any other resources to be any good. Why? Because I cannot substantiate their credibility.

It always saddens me when I hear people quoting misinformation they found on line which is completely wrong or just incomplete. That does not help them at all. Take the time to learn about your health so you can be healthier and less stress.

Monday, May 1, 2017

Taking A Break

It was our anniversary - marriage, not cancer - so we went away for a long weekend to the beach. In Maine. In April. It was 70 something degrees on Saturday - which is a heat wave there. (One of the weather people on TV said it took him a while to adjust to 80 degrees.) The hotel filled up overnight as a result. This is where we were:

We really needed a few days off to ourselves. Honestly I think its important to spend time together as a couple without distractions. For a good relationship, you need to work on it. You can't expect a happy relationship if you ignore it. We have another trip planned in about three months to keep spending time together.

What did we do? Walk on the beach every day. At least a couple of times, except for this morning when it was 43 degrees and the wind was blowing directly on shore from the 38 degree ocean water so it was freezing cold.

We also explored Portland Maine which is a nice city, ate out, played skee ball and air hockey in an arcade.

Basically I pretended I was a healthy person and enjoyed the outdoors. I may pay the price for this for a few days but I really needed to pretend I could be normal. But I also took a three hour nap the other day which helps me immensely.


Friday, April 28, 2017

Biting My Tongue (Or Letting Others Learn By Themselves)

At one's first cancer diagnosis, you are welcomed shoved into Cancerland, where no one wants to be. You learn about your cancer and probably a fair bit about cancer in general. Eventually you go on to learn more about cancer than you ever cared to know.

You get to the point where you can talk about cancer and its treatment and have a general idea of cancer treatment hell. You also understand staging and what different stages mean. You never wanted to know all this but you do and you can't deny it.

Then someone else you know is diagnosed with cancer. Do you tell them everything you know about cancer? Or, do you bite your tongue and let them learn at their own pace?

I feel strongly about biting my tongue and keeping quiet on this. If someone asks questions, I'll help them with answers but I know I am not a doctor (just a professional patient) so I can't really give advice anyway, except to say 'step away from Dr. Google'.

Part of the trauma of a cancer diagnosis is the giant pile of decisions you need to make. You have to learn a lot of information so you can make informed decisions. I learned that I needed to learn in chunks. When I was facing surgery, what were the surgical options? Then when chemo came along, a new set of decisions. And so forth. I couldn't face any more information at one time.

Also, every cancer is different and everyone's cancer is different even if the diagnosis is the same. I can't make assumptions about someone else's cancer. Nor can I force my knowledge on them. They need to start with their doctor, their prognosis, and their decisions.

The same goes for caregivers. They need to learn as they go along. If they are providing care, ie being a caregiver, they need to get on that bus to Cancerland with the patient and help them as much as they can. If they aren't helping the patient, they are not a caregiver and can go back to whatever they were doing.

A trip to Cancerland should be viewed as a journey of 10 million steps (put that in your pedometer and you are done for the decade) which comes with its own dictionary and encyclopedia and staff of 10,000 providers that you have to decipher. You need a caregiver to hold you hand as you go along and help with all the research and emotional support - even if it comes down to bringing a barf bag after chemo. You can learn together. But call me with any questions and I'll try to help.

Thursday, April 27, 2017

You Can't Put A Big Bow On A Cancer Diagnosis

When a cancer treatment commercial airs, the people are happy and smiling. The drug or medical center promises they will cure you and you will be back to yourself soon. They want you to believe that they will make it all better.

They are full of bullshit.

"Patients and families are bombarded with the news that the country is winning the war against cancer. The news media hypes research results to attract readers. Drug companies promise "a chance to live longer" to boost sales. Hospitals woo paying customers with ads that appeal to patients' fears and hopes.
"I'm starting to hear more and more that we are better than I think we really are," said Dr. Otis Brawley, chief medical officer at the American Cancer Society. "We're starting to believe our own bullshit."

The consequences are real -- and they can be deadly. Patients and their families have bought into treatments that either don't work, cost a fortune or cause life-threatening side effects.

"We have a lot of patients who spend their families into bankruptcy getting a hyped therapy that [many] know is worthless," Brawley said. Some choose a medicine that "has a lot of hype around it and unfortunately lose their chance for a cure."

Cancer doesn't come with a pretty bow on it (or a stupid ribbon). Basically cancer is nasty. Its a date with death unless you get lucky.

Current advertising wants you to believe they can cure your cancer and keep you smiling. They make all sorts of promises. But those promises are vague. they can extend your life.

But they do not tell you how long - either the medical centers or the pharmaceutical manufacturers - and it could very well only be a couple of months. And those side effects that are printed in tiny type at the bottom of the ad? Well how about a lot of quality time in the bathroom with diarrhea, extreme pain, fever, chills, and shakes? They never tell you that part.

So perhaps there is a little 'fake news' in the commercials for these cancer treatment centers and the treatments themselves. And they do not even provide enough information for patients anyway.

With a cancer diagnosis, we need to not believe the hype and accept the facts while we find the best treatment options for us.

Wednesday, April 26, 2017

Am I or Will I Get Better?

I get asked often, am I getting better? Have any of my doctors found a miraculous treatment for me?

The answers are and always will be a big fat 'no'.

There are different kinds of ailments out there. They are (in my non medical terminology):
  • Acute - an ailment which happens and gets better. Think a cut, the flu, appendicitis, Lyme disease.
  • Chronic - an ailment which occurs and lasts and lasts and lasts. Think things like arthritis, fibromyalgia, degenerating disks, etc.
  • Terminal - an ailment which will kill you. "Terminal illnesses or infections are considered incurable when there are no conservative therapies available which will eliminate it from the body." Think cancer*, untreatable MRSA infections, etc. 
My medical history includes several chronic ailments that have no cures to date but are treated to minimize deformations and relieve pain. These are: rheumatoid arthritis, degenerating disk disease, and fibromyalgia. Then I get to add a couple of cancers on top of that as well as significant injuries which are not repairable (think bad knees). Every so often I get an acute ailment like the flu to add to the fun.

My treatments all focus on making me feel better. But nothing will cure all of me. So no, I will not get better. But thanks for asking.

*Cancer gets the asterisk here because sometimes cancers are treated as chronic after standard treated. You can never be sure you got all the cancer out of your body. 

Tuesday, April 25, 2017

Stepping Back to the Big Picture

Sometimes I just need the big picture and skip the details. Yesterday I saw my knee doctor. I asked him to update his notes on my appointment on the big picture state of my knees. I need this information for my SSDI application and I sometimes just need the big picture for myself.

The status is, and I quote, "At some point they will end up being bone on bone and we will need to talk knee replacement. That could be in ten years or two." In the meantime, I can continue to get steroid injections in them and possibly arthroscopic surgery to clean up the right one.

I hate all this medical crap. Sometimes I get too bogged down in the details and the day to day crap that I forget about the big picture. And sometimes, like this one, the big picture isn't too great. The answer I wanted was 'your knees will be miraculously cured in about two months'.

But I really did need the big picture for my disability application. Which is still grinding through the system, awaiting a meeting with a judge.

I digress. I will also need to talk big picture with my other doctors as well. I could use the overview from them as well.

Monday, April 24, 2017

When Are We Done Healing and Grieving After A Cancer Diagnosis?

Is there supposed to be a secret moment that you reach and realize that you are done healing and grieving after a cancer diagnosis? I know there are the five stages of grief or whatever where you end up at acceptance. But does that mean you are done healing and grieving and don't carry around your emotional and physical scars?

I think probably after a good 20 or 30 years or so most surgical scars are pretty much invisible but I am not sure about the emotional ones. We carry those around a lot longer. We may reach acceptance but that doesn't mean we are emotional healed. The wounds run very deep.

This summer marks 36 years since my first cancer diagnosis and ten years from my second. Do I feel healed and am done grieving? I don't know. How are we supposed to know?

I am not talking about thinking back to the "what if's", "what if I didn't get cancer?" We can't undo a cancer diagnosis. Its not the physical scars or the loss of body parts.

Its the "how did cancer change me?" If you think about this, before cancer would you have:
  • made friends with the same people who you met through your cancer?
  • done the same actions - a cancer walk/ride/retreat?
  • become an advocate and called your senator regularly?
This is how cancer changed us emotionally. Is the annual cancer walk that you do part of your healing and grieving where you end up being one of the recognized survivors afterwards? Would you have done that same activity? 

I am not sure how well I am explaining my feelings on this but I am not sure we ever get past a cancer diagnosis even if we have reached that 'acceptance' when you went back to that 'new' normal.

Saturday, April 22, 2017

The Good, The Bad, and The Ugly

So my life is having its normal ups and downs. There are definitely the good, the bad, and the ugly.

What is good? A whole bunch of things:
  • I actually got enough sleep for a couple of nights. I slept late two days this week which helped. 
  • Spring is actually springing. I planted some spinach and peas. Both are cold weather tolerant. Spinach actually will not grow in the heat of the summer. 
  • I finally see some progress on my SSDI claim. This means I actually heard back from SSDI for more information for the first time in six months. 
  • My husband and I went to the beach for a day last weekend when it was 80 degrees. 
  • Next weekend we are going to have a few days away for fun. 
  • I was given a spinning wheel and am looking forward to learning something new (just what I need a new craft hobby).
  • I have been feeling okay these days. No major pain issues right now. 
The bad: There always is bad stuff. Sometimes its bigger than others. Sometimes its a stubbed toe and others its a complete disaster.
  • Right now I have a friend who might be having some bad medical stuff going on but is in the eternal 'holding pattern' for now. (That is the worst part of any medical crap situation.) 
  • I am not sure if my RA treatment is working. I have more pain issues in my hands and feet. I see the doctor next month to discuss.
  • My knees are pretty bad. I define bad as 'locking up' regularly and taking turns throbbing, aching, and little shooting pains through them. Monday morning I see my knee doctor and should know more.
The ugly?
  • My garden until more flowers start blooming. There are lots of dead things and brown. I need green and colored flowers.
  • My flabby stomach that I can't seem to get rid of.
  • This is not a political blog but I will say the state of politics in the US right now is pretty damn ugly with so much divisiveness. (Why can't people just be nice to each other and stop pre-judging them based on what they think the other is like?)
And so life goes on. There are always nice things and sometimes there are not as good things. We just have to learn to balance them all. Juggling is a necessary skill for all.

Thursday, April 20, 2017

Making Treatment Decisions

A recent article on making dialysis decisions prompted me to start thinking. Basically, just because a treatment is available, do you really want it? Its your choice. I know dialysis is not a cancer treatment but my point is there.

I am a strong believer in that doctors give you advice and how you choose to follow it is your decision. I usually follow my doctor's suggestions with medications and tests and other recommendations. But if something isn't making me happy I'm quickly going to stop it - and inform my doctor's office of my decision.

My quality of life is very important to me. I don't have a great quality of life because my health has taken many things away from me so I am diligent in preserving what is left.

If a treatment protocol is high risk or has a very low quality of life, I would be very hesitant on trying it. Taking the case of dialysis as in the article, if there is no quality of life being tied to dialysis, I think it should be up to the patient to make the decision to continue with it. The same with chemotherapy. If a patient does not want to go through with it again, it should be their choice.

But going back to my thought process. There are all these new treatment options out there. But they are also pretty strong. Strong medications will then have strong effects and strong side effects. So how bad are the side effects if you take this this medication? What will it do for your quality of life?

I think you need to think, and think a lot, before you jump at that new treatment option.

Tuesday, April 18, 2017

Thoughts on Not Blogging

I get up every day and say to myself 'I am going to blog this morning before I do anything else'. As you can tell this hasn't been happening. Why? Well there are lots of reasons

  • I have been distracted by spring time and gardening (finally).
  • I have been routinely over doing things which has tired me out (because I was trying to have fun). 
  • I have been lazy.
  • But the biggest reason is I haven't felt an overwhelming need to blog. My blog was set up to give me a way to express my thoughts on issues relating all my medical crap. I guess I haven't had huge medical crap to deal with right now.
On the plus side is I really have not had horrible medical crap to deal with and have been feeling less stressed about things. Finally spring is here so I can get outside and play in the garden which makes me very happy. But it does make me over do things and then I need to rest. 

My medical crap has receded to the background. I had a month long break from appointments recently and now I am in the middle of another two week break. Not having to go to the (damn) doctor for a week or two is always good for me since I average more than 50 appointments each year (not counting PT - as of now, I have 29 appointments in the first six months of the year).

But I have been doing okay these days. My biggest medical issue is that I have given up on my damn CPAP machine. I can't sleep with anything on my face and that's not going to change anytime soon. But I did hear about a newer option for apnea that might work for me. And it is so low on my priority list that I have given up stressing about it.

So I am enjoying myself for once and not blogging about it. But I should be able to post pictures of my garden as it grows.

Friday, April 14, 2017

Hanging Out with My Peeps

If I take a look backward, I realize that I have the best time hanging out with my cancer friends, or 'my peeps'. Sometimes I feel like I hold back on my health with everyone and more so with people who don't have cancer - a/k/a the people who don't really get it. I mean they try.

I have many friends with varying understanding of what its like to live with cancer. One friend, who has RA and has lost a husband to cancer, is very, very close to understanding the life I live. Then I also have friends who barely know what fibromyalgia is.

Part of it is me. I tend to not be very open about my medical stuff until I am ready to talk about it. The first person I tell is my husband when it comes to medical crap. Then I start telling my family and my cancer friends. My family comes next because they are my family. Then my cancer friends get it.

Every week I go to my knitting group at a cancer support center. We all have cancer in varying states of treatment and health status. We have not known each other too long. Sometimes it takes a week or two for people to open up about their cancer. But we sit there and laugh about life.  We really have a lot of fun. And there is always a little sigh when our time comes to an end and we head our different ways.

I also find that I spend most of time with other friends with cancer. First of all, they are most like to be retired like me and have time during the day (I don't go out at night). Second, we can all relate to our health issues.

So I like hanging out with my peeps and having fun. No offense to everyone else but they are my peeps.

Thursday, April 13, 2017

I Was Thinking

I'm sorry, I know I shouldn't spend time thinking because it can cause all sorts of problems. I know. I should stop spending so much time thinking. I'll think about that for a while.

Anyway, I was thinking because I read an article on the giant Rheumatoid Arthritis Time Suck. When you have RA you spend a lot of time going to the doctor to deal with doctors for RA and then all the time dealing with the side effects of your RA medications. And your low immune system which makes you high risk for everything. And blood tests every 8 weeks. And more and more.

But then I get to add in the fibromyalgia time suck which causes time wasted for pain, resting after exertion, and going to doctors. And the post breast cancer required follow ups with doctor appointments, and trying to avoid lymphedema issues - which can cause all sorts of delays in itself. And the post thyroid cancer doctor appointments, blood work, ultrasounds and more. And for every ailment I can add more time sucks.

Basically if you have an ailment, it also has your schedule. You need to go to the doctor for it. You spend more time doing things if you have any impairments because you move slower. You spend time chasing down prescriptions, dealing with insurance companies, waiting at the blood lab, doctor offices, and for tests (and their results).

Being sick has a huge time suck to go with it. Just think, if you get the flu, you spend a lot of time in bed. But then it goes away and you go back to normal. And the time suck goes away. My time sucks never go away. So I get to waste time (thinking and) in the giant time suck of being sick.

Every ailment comes with a time suck.

Wednesday, April 12, 2017

No Tofu for Me!

I hate tofu. I have never been a fan. And now I have reasons for not starting to eat it.

There has been a lot of discussion on whether soy is good or bad for breast cancer. Now finally, new research has exposed the answers.

  • If you have always eaten a lot of soy your breast cancer risk is lower, and your recurrence rate is also lower.
  • If you have not always eaten a lot of soy, your breast cancer risk is at normal levels (whatever they are but I didn't want to use the word 'worse' when talking about cancer rates).
  • If you have not always eaten a lot of soy, starting to eat soy after a breast cancer diagnosis, doesn't help you and could even cause your recurrence rate to be not as good.
So, I hate tofu and will never be a fan. Now because of my medical history (one of the few good things due to it) I never have to consider eating it. Here's to a tofu free life!

Tuesday, April 11, 2017

A Care Plan?

A long time ago, back when I was in a support group weekly, I was offered a care plan to complete with my doctor to make sure I kept track of my cancer treatment.... It was several pages that were copies of copies of copies and difficult to read. I got the point but decided to skip that.

There were several reasons (besides starting with the s-word) that I avoided it.

First of all, it only covered your cancer diagnosis. It didn't include other issues, like additional cancer diagnoses, and other ailments. It only covered one cancer treatment.

Second, I keep better records than my doctors. I started a spread sheet of my medical expenses for tax purposes to see if we could deduct them - and at least get credit for all the miles traveled. This has all the information I need to track my treatment and tests and appointments.

Now a new study (because we need new studies to keep researchers busy) says that they are surprised that very few breast cancer people have cancer care plans. This surprises them? I am surprised they are surprised.

They also expect the patient to sit down with their doctor to write up their plan. Does your doctor have time to sit down and fill out a several page form with you? I'm not sure mine does.

Personally, I am happy to keep track of my treatment. I usually go to the same hospital and once I give them my record number they can pull up all my ailments, medications, and allergies. I do take medical information with me when I travel in case something happened to me and I couldn't go to my regular hospital.

But seriously? I don't need a lot of paper work to drag around for one ailment.

Sunday, April 9, 2017

Another Try At Being A Normal Person

Yesterday wasn't the greatest day. Between going to the walk in clinic for my stupid tick bite and the antibiotic that upset my stomach, I wasn't as productive as I might want to be. So today I plan on attempting to be a normal person again. It shouldn't be that difficult but you never know with me.

My plans are to warp my loom for another project, meet a friend at noon to go see another friend's new garden center, and then maybe one more errand when I get home from that. Any bets on whether I can make it?

I just get very frustrated by trying to be a normal person and ending up spending a day or two or three recovering from what anyone else could do at the drop of a hat. I spend more time recovering from doing things than actually doing things. Grrr.....

Saturday, April 8, 2017

Being High Risk

Normal people get exposed to something and they get told 'call us if there are any changes in whatever it is that is bothering them'. They get sent home basically with a 'take two options and call me in the morning'.

Me? I'm not a normal person. With my medical history? Of course not.

We live in a wooded area with lots of deer and mice outside. Our two cats like to go in and out and in and out and in and out. They bring us home presents and usually leave them outside. But sometimes they don't.

Yesterday I came home from the gym and took a shower. The cats went in and out and in and out. I decided it was time to treat them for fleas and ticks - the beginning of the season. They were mad at me because they don't like getting the drops on the backs of their necks. After I dosed him,  I picked up Evil Kitty and held him for a minute so he would stop pouting.

Fast forward to dinner time and my husband saw a red spot on my stomach.... What was it? A tick. Of course, I get a stupid effing deer tick.

I decided to go to the walk in clinic this morning to make sure it wasn't a big deal. So if you get a deer tick bite, it is more concerning when the ticks are attached for more than 48 hours. My tick was on me for about 4 hours at most.

Because (of my medical history) I am high risk (for everything), I was also given the basic anti-Lyme disease antibiotics in a single dose. 200 mg of doxycycline which was enough to make me nauseous.

So now I get to wait and see if I get Lyme disease. Most of the symptoms would be exactly what I have already - joint aches and pains, stiff neck, etc. So the one telling one for me will be chills and a fever.

And the antibiotics made me nauseous.

I'm so excited I can't wait!

Thursday, April 6, 2017

Sleep Problems, and Solutions

I might have mentioned before that I have problems sleeping. This isn't new. I have had problems sleeping since my 30s. But its only recently that it has gotten much more complicated than just a bit of insomnia. Add in things like:

  • Back pain so it can be really hard to get comfortable to sleep at all.
  • Fibromyalgia which causes both fatigue and insomnia
  • Rheumatoid pain
  • Sleep apnea and an evil CPAP machine which keeps me awake
  • Should I go on? I can....
In the past, I have been known to get up and wash the dishes and clean the kitchen in the middle of the night because I couldn't sleep. Trust me, I have been all over the house doing things because I was wide awake. 

In recent years, I have been offered medications to help me sleep. When diagnosed with breast cancer, as most other patients, I was given ativan/lorazepam for anxiety which helps sleep as well as anxiety. More recently I was given trazadone which has helped. But not as much. 

My new pain management doctor gave me a new sleep medication which he says promotes more natural sleep. It is tizanidine which is also a muscle relaxant. So far it seems to help with sleep and some other issues. (He felt that too many of my meds were in the SSRI family and when he started changing around my meds, I ended up with too much SSRI going on and my pulse and BP were way too high.)

Anyway, I digress. I have lots of sleep problems. In addition to medications, we have a new bed where we can raise and lower the head and the foot.

So where are we? 

With a new bed and lots of pillows I can get comfortable more easily. Pain management has helped control pain. I have given up on the CPAP machine because I can't sleep with it for more than an hour. (I know this will disappoint my doctors but I am okay with it and understand the ramifications.) My new meds help a lot. 

Currently I wake up once at night between 230-330 am to pee and then go back to sleep pretty quickly. This works for me. I feel rested for the most part. 

My message is if you have problems sleeping, keep trying to figure out why you can't sleep and don't give up. It may take a while but there should be a solution somewhere.

Tuesday, April 4, 2017

Note To Self: Stop Playing Doctor and Self Diagnosing

I have no medical training whatsoever past what I have learned from my doctors in their appointments. So why do I waste any time trying to figure out what is wrong with me? Last night I was lying in bed and trying to decide what was causing the pain in my ankle? Was it referred pain from my knee or hip? Or is it a new pain and what could be the source? Is it worthy of going to the doctor any sooner than my scheduled appointment at the end of the month? I really don't want any more doctor appointments but pain is pain.

And am I trying to self diagnose myself so my doctor can just confirm what I thought it was?

I have no idea what is currently wrong with me this time. I know it isn't that serious and I am not dripping blood so I am not rushing to seek medical care. But I wouldn't mind knowing the source of this....

For all I know my doctors are going to say something 'helpful' like "I'm not really sure what the cause of it is, its probably from either your RA or fibromyalgia and there is no real way to tell." I get a lot of that.

What I really just want is a cure for everything and since my doctors have yet to find the magic wand with that magic cure, so I am trying on my own.


Monday, April 3, 2017

Treatment Changes

As I near a decade (how the hell did that happen?) since I was diagnosed, I have noticed how much breast cancer treatment has changed in the ensuing years. When I was diagnosed, it was slash, poison, burn. There was potential new treatment in the future but it was looming years ahead.

I remember being in a support group meeting and we were all overjoyed to be told that cancer was now being treated as a chronic as opposed to being a terminal disease. That was a great shift in the treatment protocol in our minds. We still mentally held our hands as our friends went through chemo, radiation and surgery. We hoped for treatment advances that were 'promised' somewhere off in the hazy future.

Now all of a sudden, I realize that I know several women who were treated for their late stage breast cancer, not with surgery, chemo or radiation, but with oral treatment. They are treated with Femara (letrozole) by itself or with Faslodex or, most recently, Ibrance.

Also in the past, Herceptin was raved about as a new and safe treatment for Her-2+ patients. And now there is even a second option of Perjeta for those women.

While progress has been made and I still look forward to more progress. I want cancer to be treated as an acute disease - meaning it comes on, is treated, and almost everyone is cured and goes on with their lives.


Sunday, April 2, 2017

Emotional Stress

About a year ago, I met a young woman who had had cancer since age 18 when she was diagnosed with an inherited pancreatic cancer. She had never thought she would make it to 40. But last year she did make it to 39 so she had lots of hope. Until last fall when everything changed.

In the fall, she found out nothing more could be done and she would be on hospice until the end. She got hospice at home and slowly began to decline. All of us who knew her were on pins and needles waiting and hoping. We got periodic updates on how she was doing. She was losing weight, she was not eating much, she wasn't getting out of bed much.

Then we would talk to her and she would tell us about how she is doing. She sounded fine. She admitted to being thinner and not eating much. We would hear she couldn't really get out of bed much anymore.

We realized that (a) she has been on hospice for six months, and (b) she should be close to her 40th birthday - something she never thought she would attain. Who ever thought someone would be on hospice for six months? Most people I know who go on hospice, last a few days or maybe a couple of weeks. Not six months!

In the meantime, we are all very happy she is still with us. We want to confirm the exact date of her birthday so we can make sure we celebrate it. But seriously, we are on pins and needles. We knew her too well. We knew about her cancer struggles and her family issues. She doesn't live close enough to any of us so we can just drop by. Phone contact is iffy because we don't want to wake her and she can't talk if her caretakers are there - which we never know.

How are we going to feel when the end happens? We like her and want the best for her. But this long decline is getting harder and harder to deal with. We talk about her and we care. Because we care, the emotional stress is building, the longer this she lasts.

With cancer, you have to deal with your own emotional stress. And you make new cancer friends once you are armed with your diagnosis and you share your roller coasters together. You share your emotions.

As time passes when I know I have a friend who is waiting for the end. She isn't fighting a battle or being a warrior. She is a young woman facing a terminal diagnosis which is nearing as each day passes. And as I am a friend, I am sharing it with her. And sharing her emotions too.

Saturday, April 1, 2017

What A Beautiful Day!

After I stretch, I'm going out for my last long run before the Boston MArathon. I'll stick to a few shorter runs between now and then. I did well enough int he New York Marathon two years ago to qualify for Boston. Next year, I might run London again or maybe switch to tris...I mean why not, I'm doing pretty well these days.

Tomorrow my husband and I are going to clean out the garage and power wash the floor. We have a lot of heavy stuff to move out but I think I can do it. I'll probably paint the dining room later.

Next week, I'm going to focus on weight training and do the spring yard clean up. Its full of debris from the winter's storms.




APRIL FOOL!


Today its snowing to beat the band and my back hurts..... Did I get you? I'm no healthier than I was yesterday - which is not very healthy at all.

"Ma'am, on a scale of one to ten, with ten being the healthiest, can you tell me how healthy you are?"

"I believe I'm a negative 37....."

Thursday, March 30, 2017

My Health Is Trying My Patience

What if I could be normal and when I tried to be a healthy person I could actually do it without having to spend time recovering?

Yesterday by the time I got home I was exhausted. I had had a very long day. What did I do? Got my hair cut, went to the gym and a doctor appointment. I had to lie down for a while. I left my house at 1030am and got home at 430pm. Six hours?

My original schedule for yesterday included a 930 appointment at the gym. I decided that would probably be too much for me and rescheduled. I knew I had down time during the day and was going to go visit my parents for a bit. But then I got the brain storm to shorten my day. Its one thing to skip the gym or the grocery store because I was too tired but its another to skip a doctor appointment.

So anyway, my health is seriously trying my patience and I am sick of fed up with it. If I can't manage six hours out of the house, including a good hour sitting down, what am I supposed to do? Just stay home and rot? Grrr.....

Call me frustrated. I think I can manage today. All I have to do is go to my knitting group and come home. A much shorter day.

Tuesday, March 28, 2017

A Useless Appointment With My CPAP

I go to a very good hospital for all my treatments. I usually have good productive appointments and don't feel I wasted my time. Yesterday was completely different.

Last week I blogged about Rebelling because I hate my CPAP machine so much. I was waiting to find out about my oh-so-important desensitizing process to be able to use the damn thing. Yesterday was my big appointment where I was to be educated. This is what I learned:

In order to get more comfortable with my damn mask, I should wear it around the house so I can get used to wearing it and then I should be able to start using the damn thing. That was not very enlightening. I had already tried it and still hate the damn thing.

I also learned what the options are for apnea treatment if you cannot deal with the damn mask:

  • surgery - where they remove your tonsils, adnoids, uvula (the thing that hangs down at the back of your mouth), and part of your tongue (doesn't that sound disgusting? It will never happen to me).
  • dental device - like a retainer which pushes your lower jaw forward at night. But then you have to be able to wear a retainer while you sleep.
I shall not be doing either of those. I will attempt to try the damn mask again but if I can't adapt, I ditch it and cope with the consequences.

I also asked about my problems when I do sleep with the mask I get these awful weird dreams and do not feel rested when I wake up. The reason I was given is that I probably never reach REM sleep without the mask and dream as much. So if I do use the mask, I can attempt to sleep with a mask on my face that I hate and have weird dreams that leave me feeling out of sorts. Not a good combination.

This is clearly a case where I should have skipped my doctor's advice and never gone on that sleep study last fall. All this in pursuit of a good night's sleep. Damn.

And I wasted an hour yesterday learning all this.

Monday, March 27, 2017

Managing Weird Symptoms

So we all get these weird feelings sometimes. Something starts aching, or tingling, or twitching, or pinching, or just not feeling right. We start having little debates with ourselves (where it is perfectly acceptable to talk to yourself, ask yourself questions, and answer yourself back) how long has it been going on, is it that big a deal, do we want to go to the doctor, do we need to get some medical care (if dripping blood, the answer always apply pressure and get to the ER stat). Then we try to make decisions on what to do and when to call the doctor, or not.

Eventually, it goes away or gets better (with or without medical care) and we move on. We might have a scar or a bottle of left over prescription pills and or a pile of bandages we stick in the back of the closet. Or do we move on, can we move on?

I have found that before my second cancer, every medical misadventure just went by the wayside. I didn't overthink anything because it wasn't really that important. Well, I do admit to asking about potential cancer crap because of my first diagnosis once in a while but I never really stressed.

Now I have to institute the five day and two week rules to prevent over-stressing and too many doctor appointments. The time limit means if something is not getting better within the time frame, its time for a doctor. Significant ailments, like extreme pain, very high fever get the five day. Anything else is on the two week rule. If I make myself wait, usually I end up not needing the doctor, or so I make myself think.

Part of relearning to be a semi-normal person after cancer treatment is learning how to handle potential ailments. I cannot let myself fall into the trap where every new symptom is a really BAD thing.

I also have learned that I need to learn to tell the story about any symptom when I get to my doctor (my old PCP taught me this). I shouldn't go to the doctor and say 'this hurts'. I need to go to the doctor and say 'this hurts, for this long, when I do this, and this is what I have done to try to deal with it'.

But with two cancer diagnoses, my tolerance for symptoms is very different. Somethings I tolerate a lot of and somethings I tolerate none of. Its my body and I get a lot of the same reaction from medical professionals - I have a lot going on medically and am not the run of the mill patient. So its up to me to make sure the medical people understand what I need and how to make me feel better (if possible).

Okay, this is a long and whiny post on me and my weird symptoms and how I deal. Frankly, I just want to be healthy again...

Sunday, March 26, 2017

Making Breast Cancer Friends

You have breast cancer, I have breast cancer, we are now friends.... For life. That's just the way it works.

It also works with people with other types of cancer or other chronic ailments. There is a bond.

Stop by the chemo waiting room and you will find it full of people who become friends because they share a common bond - cancer.

Before breast cancer, I wasn't as open about my health (and I was a lot healthier) and I wasn't as quick to jump on the cancer bandwagon and make new friends. But now, its different. If you are open about your medical crap with me and we have similar diagnoses, we will be instant BFFs.

Many others do the same. I hope even more will.

Friday, March 24, 2017

Damn The Mutations, Full Speed Ahead

So now they want to tell us that cancer is mostly the result of genetic mutations, as opposed to other factors. I'm not sure how much of this I want to believe but I'll just say 'damn the mutations, full speed ahead'.

Cancer causes are supposedly:
  • 66% - mutations when cells replace themselves
  • 29% -  environmental factors
  • 5% - hereditary factors
So can we stop blaming our parents and our bad diets, and just assume none of it is our fault? Probably not.

As a normal part of life, cells divide and multiply and little mistakes happen all the time. Its just that sometimes they turn into cancer....

"Lifestyle factors still matter for cancer prevention.
Just one mutation is not sufficient to cause cancer -- typically three or more mutations must occur, Tomasetti noted. If, say, your cells miscopy DNA and so cause two random mutations, a third mutation is still needed. Obesity, smoking, lack of exercise and poor eating habits might supply that necessary third gene defect that tips your body into a disease state."

So go eat a salad, quit smoking, and go to the gym. And for those of us who were already doing all of those and still got cancer, can we please just blame bad luck and not blame ourselves?

Thursday, March 23, 2017

I Am Rebelling

Sometimes I need to let my inner rebel out and stop being such a good patient. I usually try to be a good patient (and go to my appointments, take my meds as prescribed, talk to my doctors honestly and generally do what they want me to). But not right now.

Last fall I was told I have sleep apnea and my doctors want me to have a CPAP machine for sleeping. I got my CPAP machine and hate it. I can't stand having anything on my face while I sleep. I am on my second mask and still cannot deal with it. I wake up and want to rip it off my face. If I sleep with the mask on, I don't ever feel rested and have the weirdest dreams.

I went back to my NP for the sleep department yesterday to talk about how I am doing with my (damn) CPAP machine. She said that because of the problems I am having, I could go to a plastic surgeon and they would do some kind of 'adjustment' and then I wouldn't need a machine. (The idea of any kind of surgery like that makes my skin crawl.) Since I have rheumatoid arthritis, no one wants to operate on me because I will not heal well. So we nixed that idea.

My next step is to go see the sleep clinic for CPAP mask for desensitization therapy to get used to the (damn) mask. I am not sure this is going to work for me. I have already tried everything from taking naps with the mask, wearing it when not trying to sleep and just resting, but its not working.

If I fall asleep with it, I end up taking it off shortly afterward because I can't sleep with it. And the whole point of a CPAP machine is to sleep better. I haven't slept better with it at all. And I got it at the end of January.

This is a long way of saying that, while I am willing to actually try a little more to get used to the (damn) mask, I am running out of patience and am not going to try that hard based on two months of treatment so far. Frankly, I do not expect the machine to work for me at all. So my inner rebel is saying, while I will give it a try, I am done making a giant effort.

The (damn) mask has been hanging on the back of the bathroom door for a couple of weeks. It is staying there until they explain the desensitivity therapy to me and I get to try it.

I know apnea leaves to all sorts of issues including fatigue, sleepiness, weight gain, snoring, etc. I also know that I really hate the (damn) mask.

Monday, March 20, 2017

What Do You Want To Be When You Grow Up?

I always hated that question: what do you want to be when you grow up? Or, the job interview variation, where do you see yourself in five years?

I admit to asking it of potential candidates when interviewing them to find a new employee. I did ask it, not because I cared what they wanted to be or where they saw themselves, because I wanted to see how they responded when put on the spot.

I digress. I finally have an answer to what I want to be when I grow up. I admit it may have taken me a bit. But now I know.

I want to be healthy.

That's it. Is that too much to ask? I don't see it as being unreasonable. I think its a great goal. To be healthy.

Sunday, March 19, 2017

The Really Bad Reason For Decline in Cancer Rates

There is a really bad reason for declining cancer rates. That is when people lose their health insurance and stop going to the doctor. New research has recently found that as people lose their jobs, they lose their health insurance and stop going to the doctor so fewer cancer cases are diagnosed.

"As the country plunged into recession between 2008 and 2012, something unexpected happened: An earlier small decline in the number of new cancer cases became a much bigger one."

And...

"A 2015 analysis in the Journal of Cancer covering the years from 1973 to 2008 found that the incidence and treatment of cancer in the United States dropped during recessions and with increased unemployment rates.

During such periods, patients were perhaps more likely to forgo tests for early detection or ignore symptoms due to financial consideration, the researchers suggested."


Unfortunately this does make sense. If you lose your job and can't afford to pay Cobra coverage, medical visits will probably cease. If you don't see a doctor, you can't get diagnosed with anything. 

[This isn't a political post but now our new president wants between 14 and 24 million people to lose their health insurance. (Just saying....)]

This shows the value of health insurance. And its not just cancer. If you don't go to the doctor there are lots of other things that can also eventually kill you. If you don't have insurance, you really want to be careful about how you are feeling and if you do feel something is wrong, find some  place, any place (besides an Emergency Room) to get checked out. You are your best advocate.

Damn, the politicians.... But its not a political post.

Saturday, March 18, 2017

Back to Breast Cancer Stuff

(So my plan is coming together and my life goes back to reflecting on breast cancer crap.)

Earlier this week, the FDA approved a new medication to be used with Letrozole (Femara) or other aromatase inhibitors for hormone positive metastatic breast cancer patients. This medication (which I can't pronounce and just think of it as the 'kis...') is called Kisqali (chemical name: ribociclib). It works similar to Ibrance... Not that that means much to me but as a reference.

My real concern is the cost. Ibrance costs $9850/month for treatment. Not cheap. All new cancer treatments seem to cost so much. 

But I am pleased to learn that Novartis has developed a flexible pricing plan for Kisqali;
"The med—a first-line treatment for HR-positive, HER2-negative breast cancer that will compete with Pfizer’s Ibrance—will roll out as early as Tuesday under a flexible pricing structure, the company said on a conference call following Monday's FDA approval. A 28-day supply of the 600-mg dose will cost $10,950, while the same supply of the 400-mg dose will go for $8,760 and the 200-mg dose will run at $4,380."

My hope is that now there will be some price competition between the two. Not that many stage IV cancer patients do much price shopping while looking for treatment but maybe the insurance companies will.

However, the best thing is that more cancer drugs are being developed and are finally hitting the market. 

Friday, March 17, 2017

Forming the New Plan (Part 3)

So, my new plan is forming. I have done some thinking and some research. I also talked to my therapist and she gave me a few ideas. My biggest weakness is that I cannot over-schedule, over-commit, or over-stress myself. I need to pace myself.

I have found some events to attend - a gardening as therapy event at the library and the next monthly Garden Club meeting. Of course they are only two days apart. I hope to get my husband to go to the first one with me as it is on a Sunday. He might.

Going forward I hope to join the garden club, but their year runs September - June. They only have two more meetings this spring. I am also going to keep my eyes out for more events at the library.

So if I find an event or two there each month, add the garden club meetings, that will get me out of the house more. I should actually learn some things there too.

That's my first step. I also plan to reach out to the Senior Center to see if I can do something there. My therapist suggested starting a knitting/needlework group there. They already have a knitting group that meets at the exact same time as my other knitting group at the cancer support center.

However, I am not sure I want to commit myself to another weekly obligation. Well, its not that I don't want to commit, its that I am not sure I am physically able to commit to one. (See that's the problem....)

Starting in April, gardening season will begin and I can fill my time outside. No I can't plant anything until mid-May but I can plan and prepare. I have already started my snapdragons inside.

Then I have a friend coming to visit in May. I will go to the beach to visit another friend in June for a few days. More travel over the summer.

This is a start. The plan will continue to come together.

This is me getting my mental state together again and forming a new plan.

Wednesday, March 15, 2017

The Bad Plan (Part 2)

After moving and I came up with my 'plan' on how I would adapt to moving to a new community and stop working at the same time. But it doesn't seem to work as well now.

For the first months after we moved, I was really busy. I worked on our new house. I painted rooms, I started gardening, I got us settled in. Once you unpack you still have a lot more settling to do.

My house painting skills have improved but I go very slowly. It took me two weeks to paint one hallway. I did one side one week, and the second side the next. I spackle one day, sand the next, wash the walls, tape, and then paint - primer and two coats.... I have to break it up because i can only work for a short period before needing a break. The living room took three weeks.....

I still have more painting to do - dining room (2 walls), kitchen (2 walls), and half the basement. I also have to go back and fix some areas..... This could take me months. I promise I will get to them but some days I look at the amount of exertion required and decide I am simply not up to it.

Therein lies my problem. I get too tired. I can take days to recover from too much exertion. For example, we went some place and had to stand in line for 45 minutes. It took me 3 days to recover. If I go out for a few hours and do anything that requires standing, I come home and lie down. It is not uncommon for me to come in from the gym and the grocery store and be too tired to put away all the groceries, or even carry them inside.

I also want to garden more. Last summer, my husband worked very hard and doubled the size of our garden, significantly reducing the amount of lawn. Then we had a drought so gardening came to an end.

I think part of my problem is winter is long and it greatly limits my activities outside. I do my weaving and knit inside year round but a little fresh air now and then is appreciated.

Right now I just want winter to end so I can do some gardening. In the past, I used to be able go out and enjoy winter - hiking, skiing, snow shoeing, etc - but those have all come to an end.

As winter has dragged on, I have spent more and more time inside, by myself. My husband works full time. I keep meaning to go up to the senior center and meet more people but its 20 minutes away at the farthest end of town. I am a little young for the senior center (I can't join for five more years) but almost all their activities are during the day. I am not up to going out at night.

I have upped my volunteer work and am doing more with the local cancer support center. But I do it all at home by myself.

My plan is falling apart because I spent much more time by myself at home than I ever expected. I also have not met as many new people as I thought I would. You not easy to meet the neighbors if its winter and everyone is hiding inside. Most of our neighbors work full time and have children. I have neither in common.

I have maxed out my knitting and weaving and will continue. This is so I have enough for my craft fair months in the fall. But that's not very interactive.

I also have been having some health problems which further limit my life. My formerly good left knee became my new bad knee a year and a half ago. My formerly bad right knee which is now my 'good' knee and I have been overusing it to compensate for my left knee. It has decided to start locking up and I have already had some fluid drained to help but it will need more work.

On top of that, I have been told I have apnea and need a CPAP machine. So I got one and the mask was not right for me so I had to get a new one. The new mask still doesn't allow me to get a good night's sleep.

Last night for example, I was exhausted and took a sleeping pill. I slept for about 3 hours without my CPAP on, woke up and put it on for a couple of hours. I had the weirdest dreams and felt very restless. I gave up about 330AM and have been up since. (I think I need a nap.)

So the bad plan includes too much isolation, loneliness, and seclusion than I expected. I need to learn better to balance what I can and cannot do with getting out more. I also need to get more sleep period. Lack of sleep can be very serious and it also compounds other issues - both emotional and physical.

I am working on a new plan. But more to come.

Tuesday, March 14, 2017

Things Are Not Working As Planned

Sometimes, things just don't go as you wanted or expected. Its a fact of life and we need to learn to cope, change directions, and move on.

In the grand scheme of things, my original plans were that would I grow up, go to college, get a job, a career, married, kids, retire to a life of happiness and world travel. Well, we know what happened to that. I got as far as 'go to college' when my health started taking over my life. One little cancer diagnosis has a big emotional impact and it took time to get my life back together.

So I regrouped and started over at college, etc. The job and career went okay. I did eventually got married but it was too late for kids. (We didn't even meet until we were in our forties.) That's fine. We bought a house, traveled, had fun. But then my health took over.

I did get laid off just before my breast cancer diagnosis, and I had already had a hysterectomy because of other health issues since getting married two years before. (And no, getting married did not cause my health to fall apart.)

I regrouped again and started working part time. I got better and got up to two part time jobs that kept me busy between 35-40 hours each week. I was enjoying myself with some travel, some crafts, and mostly keeping my health in check... But not completely. My back was bothering me more and more. That went on for about five years. But I was doing okay.

Then, I was diagnosed with both rheumatoid arthritis and fibromyalgia. Both of which are responsible for pain and fatigue and greatly limited my abilities to do much. Neither of which have a cure and rheumatoid is definitely progressive. In six months from diagnosis, I had cut back working to one job at about 15-20 hours each week. Over the next three years, I cut back more and more until I finally reached the decision that I really physically could not work any more.

That was a financial hit that was hard for us. When we purchased our house, we did it based on what we needed at the time and could afford. Our house was going to be our forever house. But because I wasn't working in Boston, never mind at all, it was clear that we did not need to nor afford to live in such an expensive area. And I really needed fewer stairs in my life. Our house was a Cape Cod with bedrooms on the second floor, kitchen etc on the main floor and laundry in the basement. I would sit in the living room and ask myself 'if I went upstairs, how to could I limit the number of times I needed to go back up stairs, maybe not back up stairs until bed time.'

So we came up with the idea that we would move to a one floor house and cut our expenses. That would solve two problems at the same time. It would allow me better quality of life and loosen up our finances.

While we were house hunting, I realized that I needed a plan for my life after we moved. I needed a way to transition from working to being more home bound that I needed to figure out what I was going to do. Our new house is probably 25 minutes away from 'everything' - doctors, gym, family, etc. I decided I could work with that provided I had a plan.

I came up with a plan. Three days a week, Monday, Wednesday, and Friday, would be my 'gym, doctor appointments, family visit days'. The other two days, Tuesday and Thursday, I would not drive down to our old neighborhood and do other things in the new neighborhood. I also wanted to see if I could find a cancer support center to volunteer, allowing me to feel like I was 'giving back' and filling my time. I did find a place and started a knitting group. I go every Thursday afternoon and have made new friends. Tuesdays are my day at home and when I can meet friends for lunch or other adventures.

I like my life for the most part now. It works pretty well. I go to the gym three days a week and to my knitting group. I see other friends for lunch. I go to the library and am learning my way around our new neighborhood. But somethings are not working as planned.
[Part 2 is coming]

Saturday, March 11, 2017

Okay, I Haven't Been Blogging About Breast Cancer

I just don't blog about breast cancer as much as I used to these days. Why? Because I like to pretend it will never come back and bother me again. That is the honest answer.

When I was diagnosed with breast cancer, I lived the all breast cancer all the time channel. Slowly over time, I managed to tune out for bits and pieces. Now I am trying to pretend cancer will never come back and bug me bite me in the ass again. I am pretending because I can tell you that with cancer twice in my life there are not many chances it won't come back again. The odds are not with me.

Since breast cancer, or the mid 2000s, when my body started developing so many bullshit  ailments, I have found that it is possible that once you have cancer, and even if it doesn't kill you, no one wants to talk to you about any potential research. They also try to pretend they do not feel sympathy for you. They actually pity you because you are pretty untreatable for normal ailments.

I am not depressed. I am really annoyed that my ailments suck up so much time out of my life. I would like to pretend I am healthy but its not going to happen.

I think my real diagnosis is 'cynic' Or more likely bullshit cynic. But its not cancer.

Friday, March 10, 2017

Math Class is Important In Determining Your Cancer Prognosis

Who knew math class would be so important later in life? Here's the problem: You get a cancer diagnosis and your doctor starts spouting numbers at you. You survival rate is this, but if you do this treatment it could be more like this. All of us sit there in a daze looking at the numbers and blindly staring at your doctor and trying to make a decision.

If you are lucky, your doctor says 'take all these numbers with you and go home and think about it'. If you are unlucky you forgot all the math you ever took and can't decide if a 60% survival rate is better than a 40% death rate. And if you are afraid of math, skipped too many classes, or just hate numbers, you get really stuck.

However we have now medical research to the rescue as this is has become a recognized issue:

"Many of the toughest decisions faced by cancer patients involve knowing how to use numbers – calculating, evaluating treatment options and figuring odds of medication side effects.

But for patients who aren't good at math, decision science research can offer evidence-based advice on how to assess numeric information and ask the right questions to make informed choices."

So there is a bunch of research that was done and you can go read it all. In my mind, what it boils down to is this (and write everything down):
  • Ask your doctors for the numbers
  • Ask them to explain what they mean without using numbers - is this better or worse than average?
  • Ask about the risk in real numbers, not just in comparison. If something is 0.3% and its doubled, that is still a low risk. 
  • If there are too many numbers, ask your doctor to tell you what are the two best options and base your discussion and thought process on those.
Finally, take a number friendly person to go with you and explain all the numbers to you.

And stop worrying about all those missing math classes and forgotten algebra so you can help yourself determine the best treatment protocol for yourself.

Thursday, March 9, 2017

I Need A Vacation

After a lot of deep thought, I need a vacation. I mean a real vacation which does not involve medications, doctor appointments, and any aches and pains. I would prefer it include a beach, warm sand, and the feeling of health.

Just a thought.

Wednesday, March 8, 2017

Why Bother?

For some reason I have had a similar conversation with different women on the same topic: why take tamoxifen or aromatase inhibitors after initial breast cancer treatment. Aromatase inhibitors are Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole)

The conversations all boil down to:

  • What if I get side effects? They have heard they are awful and could cause them some real problems. But if you don't even try them how will you know if you will experience the side effects?
  • What exactly do they do? They don't really understand that they would reduce their recurrence risk by being on them
  • Why do I have to be on them so long? It used to be five years and now new research has come out to say ten years is better. And more research is going on that may lead to even longer treatment periods
[As I write this, there is a commercial on TV for Botox for migraines. Botox is botulism, which is a very nasty germ...]

I have had friends who do the same thing with their medications.They over think them and won't take them because they have heard that the side effects might be bad. Or the withdrawal from the drug could be bad. 

You won't know if you might get side effects if you don't try the medication. And you won't get the potential benefit from the medication if you don't take it. How is your doctor supposed to treat you if you won't even try their recommended medication?

Tuesday, March 7, 2017

Once Again I Wasn't The Patient

And it was nice. I went to visit my brother for the weekend. And didn't really see him. He had a kidney stone (and a lot nastier word to describe it) that caused him intense pain.

I did get to go to Lowes with him to get parts of his upstairs sink. I also ran and emptied his dishwasher twice. Drove his children all over the place and visited him in the hospital. I fed his cat several times. I walked his girlfriend's dog a bunch of times - including in a snowstorm. I let the dog hog the bed one night and then I let the cat snuggle the next nights. I had dinner with his ex-wife and two of the children one night. I also drove 7 hours to see him and then 7 hours home.

However it was fun. I am glad I went. But because I didn't see him much, I will go back out and visit him later this spring.

Honestly it was nice that I wasn't the patient for once. I feel like I am always at doctors or hospitals. (Today I have my 15th doctor appointment of 2017.)  But it was a long drive.  I find it very different for me not to be the patient - the one the doctor wants to talk to. They couldn't care less about me and I like that part. There are no questions about my numerable ailments, pain levels, or anything. I can be part of the furniture. I think I need less time with medical people.

Friday, March 3, 2017

What An Oncologist Should Not Say to a Cancer Patient

We hear all about good doctors and not so good ones. But every so often we hear about the one's you really do not want.

Yesterday someone told me about the recent visit to her oncologist for her breast cancer treatment. She brought her sister with her for moral support and to help her out. I think she said her sister asked the oncologist something about that after chemo the tumors would be gone. And the oncologist replied with 'unless there are any other tumors'. I don't remember the exact words but the point is NEVER say that to a cancer patient.

Seriously, what was she (the doctor) thinking? You want your oncologist to be full of reassurances that after this nasty brutal treatment you endured that the chances are pretty good that you are on your road to recovery. Yes, we know that you can get more tumors at any time. Just because you are treated you are not out of the woods (ever). If that was my oncologist I would be shopping for someone else.

So if your oncologist says anything like this, run, don't walk, away and find a new one. Clearly that doctor doesn't quite get it.

Thursday, March 2, 2017

Some Kinds of Cheese Can Cause Breast Cancer - Really?

Okay, I am done. I do not care what about any more news about what can or can't cause breast cancer. I am done. The latest info is that consumption some kinds of cheese can cause breast cancer. That would be American, cheddar, and cream cheese. I never eat American cheese - because its basically 'fake food' - but I probably make up for that in the amount of cheddar and cream cheese that I eat.

But that's it. I am done. I quit smoking because it causes cancer (and it smells). But that's it. I no longer care about what might cause cancer. If I listened to all the advice that is out there, I would be living in a cave existing on organic food and distilled water, staying out of the sun and away from any thing that could be carcinogenic.

I love cheese. I love good cheddars, I love a toasted onion bagel with cream cheese. I like the smelly soft cheeses. I love blue cheese. I love feta cheese, especially on a Greek salad. I want to learn how to make my own cheese. I am not going to stop eating cheese. And that's it.

Why don't they just tell us that breathing causes cancer and we can all hold our breath for the rest of our lives.

Wednesday, March 1, 2017

I Am Not A Warrior

I cannot begin to tell you how much the tv commercial for the Avon 39 annoys me. "Warriors Wanted" is so awful on so many levels.
The woman in this ad who is the 'warrior' doesn't look anything like your typical breast cancer patient. She is too young and looks too healthy. Maybe she is supposed to be walking for someone else. But sorry no. Also, wearing a low cut tank top is not the best attire for a long walk. You want sun protection and a hat. I think the Photoshopped 'pink' does nothing for her as well.

Finally, the whole idea of being a warrior is so out of touch. For me it has the same implication of the s-word. There has been a lot of push back from the breast cancer community on the terms used to describe people with cancer. The s-word, and all the 'fighting' terms are not appreciated by many people with cancer. And they are all a bunch of labels to me anyway.

I think they need new copy writers to come up with new terms that are acceptable to the cancer community.

Tuesday, February 28, 2017

Talking About Medical Crap

This morning I briefly had the opportunity to read a wonderful blog post about why the writer writes about her medical issues. It was a great post that clearly spoke about all the issues us 'less than healthy' people have in our lives. Now I can't find the link to it but it definitely spoke to me. So here are my thoughts on this, in a less well written post.

I talk about my health issues because there is no reason not to. I am not going to be job searching again so I don't need to worry that a potential future employer would learn how unhealthy I am and therefore choose to never hire me. There is no way I am every going to be able to work full time again. So that is one of the big reasons people don't talk about their health - it could prevent them from being hired at some point in the future.

But the biggest reason I do talk (and write) about my health is that it is a big coping mechanism for me. Yes, talk therapy. Its a wonderful thing. Its the reason support groups, on line groups, and all that other stuff exist. So I am not the first person to come up with this.

Also, there is that little evil voice in my head that pops up every so often that says 'I HAVE SEVERAL CHRONIC DISEASES SO THE FUTURE ISN'T THAT ROSY'. I think if I keep talking about it and my limitations I might get more comfortable with talking about it and stressing and depressing less. Although life can be made better through chemistry (read: anti-depressants), it would be even better if there were no need to require them at all. Which leads to the next question would I be better emotionally if I was healthier? One would think so but it is impossible to know if true or not.

My thought for the day is to talk and write about my health issues but not to allow them to dominate my life.

Monday, February 27, 2017

My Capabilities

I just want to make a statement about my capabilities. I have been 'accused' of only doing what I want and ignoring my responsibilities. That is wrong. I only do what I can. I need rest. I need time to recover from doing anything.

Saturday we went to the beach for a couple hours. I mostly sat there and then we went out for an early dinner. When we got home, I was exhausted and lay down in bed. Yesterday I was too tired and we stayed home and I took a nap.

I have to make sure not to over exert myself. I don't ignore my responsibilities. I just try to do as much as I can without exhausting myself too much. Topic closed.

Saturday, February 25, 2017

I Love Social Media

I am active in social media. Believe me, I blog, I'm on Facebook, my blog is posted in a bunch of different places. I am Google+, I can't list all the places I can be found online because there are so many. I get feedback and comments from lots of places too. I get comments from friends and also from people offering all kind of  'miracle' cures provided I send in a few (hundred/thousand/million) dollars to help. And every so often, I hear from some very 'odd' (odd, in the weirdest sense of the word) people.

So yesterday I wasn't very surprised to get a comment back on "Call Me Ms. Grumpy". It read:

"stop being so self centered and focus on something,somebody beyond yourself-yeah i get it,your dying,but we are all dying,your just dying faster--go to a battle field cemmaetary and see all the young people who died very early--your nothing special"

For a nanosecond, I thought to myself 'what an ass'. But then I did think that in the grand scheme of things me being self centered is the least of my worries but it is true that I can be a tad focused on me. And its my blog so I can say what I want (because its supposed to be about me anyway).

However, I do get the point. There are so many people who are dying senselessly in needless wars who we should be concerned about.