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.

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.....

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!

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.

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.

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.

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.

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....."