Tuesday, June 27, 2017

Side Effects Vs. Costs

This morning an email on the discontinuation of a certain drug which the article says is a good thing because it will save billions of dollars. The drug in question is TKI and is used to treat CML. It works well at putting people in remission but comes with a high financial cost, $147,000 per year and causes many side effects.

This made me think. Which is more important - financial cost or side effects?

I am torn on this one. A drug that costs $147,000 per year is phenomenally expensive. If it was a branded drug on my insurance I would be charged probably 40% of that cost. Could I afford that? Even without pulling out a calculator that would be somewhere north of $50,000 each year. I do not have that kind of money.

I have problems with my high cost medications. I am on several that each cost me over $1000/year - which to me is a lot.

Then there is the side effect issue. I am on medications for the side effects of some of my other medications. I also have to have regular blood work and chest x-rays done to monitor for other side effects. (Sometimes I think I might be better off if I took no medications at all.)

But this is a bit of a conundrum - side effects or costs.

Monday, June 26, 2017

People Are Still People Even With Cancer

Life does not stop with a cancer diagnosis. It should not. If you have cancer, you are still a person. You do not need to let cancer take over everything. You are still a human being and need to do normal human being things. Like going on vacation. Or moving to another state.

If you want to go on a vacation, all you need to do is talk to your oncologist and they will help you figure out what changes need to be made. If you are in the middle of chemo, you can probably take a week off. Its not that complicated.

Your cancer diagnosis does not get to swallow you whole and take over everything in your life. People in cancer treatment also do things like visit friends, go shopping, go to the movies, and all sorts of other normal every day things.

The emotional break you get on vacation while you are dealing with cancer can be very beneficial. It can be very nice to just get away and not think about infusions, surgery, oncologists, tumors, and all sorts of fun stuff. (But if its related to cancer it is all crap.)

So go plan that vacation and have fun. You may not be up to sky diving but you can still go to the beach or admire a beautiful view.

Sunday, June 25, 2017

Standing Up For Myself

I have to learn that standing up for myself again.... I have to do better with that word 'no' again. There is only so much of me - not the flabby part (I have plenty of that) - my physical abilities are what is limited. I have to be careful on what I do and how much I do.

For example, I am slowly learning not to be the perfect hostess who  jumps up to help anyone who asks a question while in our house. I just can't. If I jump up for every request, I won't have any energy left. If its a good friend who wants a corkscrew, I am happy to say it is in the top drawer of the side board... If its not that close a friend, I am happy to hand them the corkscrew and let them open their own wine.

I am also learning to use the word 'no' again. If someone wants me to go some place, I need a good reason to go with them. Basically, do I really want to go. For example, if someone wants to go shopping for one of the following items, I will be happy to go, for a short while: used clothing, yarn, or plants. If its for something else, I need a good reason to go with them. I have to decide basically if its worth the effort on my part. Its amazing how something little, like out to lunch, can take a lot out of me.

My best remedy for doing to much is lying in bed. This morning I finally got out of bed at 1145AM. I did go to bed around 945PM. So that's only 14 hours of rest. We did have a few friends over for dinner last night and I probably spent too much time getting ready. But that long lying down made me feel like a new(er) person. Today I have finally made it to my computer at 1pm. I will be lazy the rest of the day as I plan on how I will use the word 'no' this week.

I really have to get better at standing up for myself.

Friday, June 23, 2017

I've Been Away

As us New Englanders say, I have been on the Cape for a few days. What does that mean? I went to Cape Cod. I stayed with a friend and her significant other for a few days at the house they rented for a month.

Her significant other had to go back home for a few days so the two of us had fun shopping at thrift stores, consignment stores, yarn stores, and book stores. I was on the hunt for a few items - spoon rest and clock for the downstairs. I found them. And a few other things that I didn't need. Like yarn, clothes, etc.

Finally the weather cleared up and we went to the beach. It was awesome. Do I have pictures? No. But there were sand bars that went on for miles, and miles. And I did get a touch too much sun.

But then all good things need to come to an end so I came home.... But it was  wonderful mini vacation.

Monday, June 19, 2017

Insurance Only Covers What It Says It Will (Usually)

We all purchase insurance for all sorts of things. We have car  insurance, home owners insurance, renters insurance, property insurance, flood insurance, and of course medical insurance in addition to many other policies.

Recently I have seen commercial on TV that offer insurance for homeowners to cover things like dishwashers, hot water heaters, air conditioners, etc. They show 'customers' asking their homeowners insurers to cover their broken AC units. After being turned down, the announcer offers home insurance policy to cover the appliances etc. I think - what a scam. I consider this to be the same as the extended warranties offered when you purchase items.)

But I digress (again), I have a real problem when people assume their health insurance will cover things that it does not - like 'wilderness therapy'. I get it. Your teen or other family member is headed for a crisis so you try to find some kind of therapy to help them. It turns out to be successful and you expect your health insurance company to pay for it. Did you bother to ask them if they would cover it before you sent your family member?

This is where I have a problem. How can you expect your insurance company to pay for something just because you think they should? I get you were very stressed and wanted to do the best for family member, but ask first...

I also understand that we want our insurance companies to pay for new therapies as they become available and have recognized benefits. This is a constant issue. Insurance companies must be forced to change with the times.

However there is a right way to do things if you want to have the coverage. Get a preapproval and then your insurance company will be on your side. Or work with them ahead of time to get their okay.

Sunday, June 18, 2017

The Combination Diagnosis

Presto, you were a healthy person, who in addition to going out for drinks and appetizers with friends on weekends, you also used to go to the gym, hike, bike, swim, blah, blah, blah. All sorts of activities. Then, the ball drops. Now you have cancer and another ailment which prevents you from doing much of everything.

You read about those 'other' cancer people, who took their athleticism to new heights after their cancer diagnosis. They climb not just mole hills, but Mounts Everest and Denali in the same month. They learn to stand on the big fat boards and pole their way across the Pacific. They boast about their return to health by stretching their athletic abilities 1000 fold. They walk 40 miles, or 39, or 60, to show their resolve to be healed and have their new normal. Their doctors and the rest of their medical team applaud their efforts to become and athletic over-achiever.

(Honestly, I find them a tad nauseating. I mean shouldn't you be happy doing everything you used to do once your hair grows back and you find some energy?)

During chemo, my doctors thought I was great because I would take a walk every day during treatment. Then my body decided to fall apart along the way.

Me, on the other hand, manage to walk to the end of the street and back on a good day. I try to fit in a little weaving and knitting as well.

Now I do go to the gym to help me along but it is a struggle. I only can go to the gym because I have the support of physical therapists and I was already exercising there before RA and fibromyalgia. I fight the urge to nap between making meals.... (what is wrong with a nap after breakfast anyway?)

Finally, I found someone else who feels the same way. Kelly Irvin, wrote for Cure Magazine and has Ovarian cancer and primary lateral sclerosis (PLS), said:

"My range of motion is severely limited. I recently graduated from a cane to a walker. A once active seven-day-a-week queen of aerobics, I now struggle to walk to the mailbox. How do the cancer ninjas in my boat reap the benefits of exercise that include reducing stress, keeping extra weight off or losing weight, maintaining muscle mass and fighting off the side effects of chemo such as fatigue and hypertension?"

Her advice includes;

"...we can exercise our joy muscles..."

"Find the activities that make you smile. Do them regularly. We can also find the spiritual exercise that calms our souls. For me, that means I can exercise my faith muscle—the one that offers me hope because I’m reminded that someday I’ll shed my scarred, limping body and dance the two-step with my heavenly Father. That muscle goes arm-in-arm with the empathy muscle. I exercise it when I pray for others who are paralyzed and receive cancer treatment in their wheelchairs. I need only look left or right to see others who exercise their courage muscles every day. Exercise comes in many forms. We don’t have to scale Mt. Everest or finish a triathlon to reap its benefits. We simply must get in the game—our game."

We cannot feel ashamed or upset that we cannot do what we used to do nor what we see others do. We must do what we can. I realize I cannot dream of climbing any mountains any more. But I can appreciate that I do the best I can. And that is all I can do. Our goals should be joy, empathy, and emotions.

Saturday, June 17, 2017

To Test or Not To Test

Once you are diagnosed with cancer, you have two key desires:

  • Get the damn thing out of me! 
  • Make Sure It Doesn't Come Back!
So you have surgery and they remove every thing they can. You might have to have more surgery to get those pesky clean margins. Then the give you nasty drugs for chemo and might zap you a few times as well with radiation as well. You might get some pills too. All sorts of fun and games thrown at you. 

The doctors swear to you that they have done everything possible to get the cancer out of  you.  So you go back to your oncologists and they tell you... see you in three months! You kind of freak out because you had been getting day to day care from your oncology team and they wanted to know about every fart and sniffle.

So you take a deep breath and wait three months. You go back to your oncologist and they tell you: 'your blood work looks fine, see you in another three months'. You take a really deep breath and ask shakily 'aren't there any more tests? How do you know there is no more cancer in me?' Your oncologist says 'there are no other tests that have been shown to be of any value in following your cancer.' 

This is a very real scenario. Although the patient may want more scans or tests to look for any teeny tiny cancer cooties, there may not be any else they can do to look for cancer for you. There is no evidence of your disease. They have no way of looking for anything now. 

They have to wait until you get some kind of symptom. This could be anything from a fever, swollen lymph nodes, or unusual pains. Then they can run more scans.

There are two reasons that doctors cannot provide more scans: 
  1. Scans may not have the resolution to show anything smaller than say 7mm. So they have to wait until something is large enough for them to seem. Scans can include high doses of radiation or contrast agents. You really do not want to have many of them.
  2. If you have bottomless pockets, you may be able to convince your doctor you will pay for them because your insurance may not cover scans unless you are symptomatic. 
An additional cost of scans is 'scanxiety'. This is the huge emotional toll on the patient at each scan. It is often better to stay off the emotional cancer roller coaster than to push your way back to the front of the line regularly.

I get it. I really do. I did recently get rid of a back doctor who didn't see a reason to rescan my back after 7 years of treatment even though I complained of different pains over the years. But I am very happy not to have any more cancer scans than the annual mammogram and annual neck check from my endocrinologist. I will speak up if I feel anything weird or think something is going on. (But my track record in noting bad things is awful - if I think there is something there isn't.)

I do not want to have any more scans. If there is a need to have more scans, that would freak me out just as much as a new cancer diagnosis. So test me less and I will be happy.I am happy to live in my cancer free la la land, than to be rediagnosed.

Thursday, June 15, 2017

Houston, We Have A Problem

I stole that line from the episode of Brother Vs. Brother that I am watching as I type. I cannot believe how much I have been sleeping. We had a heat wave here. (In Boston terms, that means 3 days in a row over 90 degrees. The rest of the world may snicker about that but we just don't get that much heat here.) And I am not used to it.

Sunday I wore myself out completely and got overheated and I had to rest with an ice pack on the back of my neck for an hour or so. Monday was another sweltering one. Tuesday was hot as well but I went to the beach for the morning. As I left the beach, I felt the waves of fatigue start. I had lunch and went home.

Yesterday I went to the gym and then met a friend for lunch and a little shopping. I ended up taking a 1.5 hour nap before dinner. My husband made dinner even but I went back to bed at 9 pm. I have been sleeping very well - especially since we put the air conditioner in our bedroom - but I still run out of 'oomph' too early in the day.

So, Houston, we have a problem. I need more 'oomph'. I hate running out of 'oomph' when there is more 'day' left. More 'day' means I have more things I need to do. Napping more is not a cure either....

Wednesday, June 14, 2017

More News I Don't Need

You know they tell us that evil cancer cells come out of the nasty cancer tumors and send them secretly through your body so that they show up later as unwanted metastases. These little cancer cooties (the professional term) are just nasty and unwanted and really want to kill us all in the end.

Now we have new research (because we always need more research) on how metastases occur. Or more correctly where and when the cancer cooties come from the tumors. Earlier research had thought that cancer cells came from the exterior of the cells and not very early.

"Even in remission, cancer looms. Former cancer patients and their doctors are always on alert for metastatic tumors. Now scientists at The Scripps Research Institute (TSRI) have discovered why some cancers may recur after years in remission.

The findings, published in the journal Cell Reports, show that invasive tumors can begin sending out tumor cells far earlier than previously thought. These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years.

Importantly, the scientists demonstrated that the escaping tumor cells reach the bloodstream by entering blood vessels deep within the dense tumor core, upending the long-held belief that metastatic cells come from a tumor's invasive borders."

I did not need to know this. I really did not need to know that these cells can escape long before the primary tumor is detected. 

"These escaping cells – which can enter the bloodstream before the primary tumor is detected – may seed secondary tumors that don't show up for years."

I love that line. Your metastases could be sitting there, hiding, for years before and after your original diagnosis. Then you get to sit there and ponder 'did my chemo kill those cancer cooties? Or am I doomed already?' No, doomed is not a good word. But I can't think of a better one. 

In addition, now oncologists need rethink metastases...

"The research suggests a primary tumor does not have to be highly invasive to seed metastases. In fact, doctors may want to reconsider the time frame for the onset of cancer cell dissemination. While invasive tumors are more likely to manifest intravasation, the two processes – intravasation and invasion – appear to be independent of each other."

So your basic, run of the mill, cancer, could be sending out more cooties all the time. Nice.

I need to stop reading cancer research. I didn't need this.

Tuesday, June 13, 2017

Making Medical Decisions

We are given medical decisions all the time. When faced with them, there is the ever popular 'do nothing' option. The problem with that option is that it probably isn't the best option. If you are given a medical decision to make and you decide to ignore your options, you aren't doing yourself any favors. However, if you ask doctors you will probably find this to be very common.

The next option is to act and make a decision to do something, besides 'nothing'. This is usually the best option. But when making this decision, the criteria to look at are:
- benefits to you, the patient - longer life, less pain, etc
- benefits to your family and friends - you are still with them, you are less grumpy because you are in less pain, etc

Criteria to ignore:
- potential side effects of your choice. Most surgeries will leave a scar and some short term pain. Most medications carry some side effects. But you cannot know what can happen to you - how much short term pain, scars, or side effects - unless you try them.

The issue of cost can and does come up but then again you need to weigh it against the potential benefits. Many aid programs are available for those in need if you research it (ask your local social worker for assistance in this).

Then there is always the issue of deciding to doubt your decisions. No one can help you with this but you. You need to realize that you did think about it and made your decision so there is no reason to go back and rethink it unless you have some new information. And you cannot put your decision burden onto someone else. It needs to be your decision - its your body.

Okay, apparently I digress sometimes on stupid subjects but this one just annoys me to no end.

Sunday, June 11, 2017

Its Complicated

Personally, I do not consider myself to be a complicated person. However, alas, my health is very complicated. Yes. I am the kind of patient that forces doctors to consult with other doctors on my health before they see me or offer treatment options. They come to me with big sighs and long and repeated looks at my charts.

Nothing is simple for me.  I am ineligible for clinical trials because my health is too complicated so I am always kicked off the list. Medications are complicated. I am allergic to lots of things or they might interact with all my other medications.

If I go to physical therapy for anything, I can never do the standard exercises because they make my back, knee, hip, or something hurt.

I wish I was not complicated. I would be happy being very simple.

Friday, June 9, 2017

Finding Support Resources

In my personal experience the most important thing to do after a 'yucky' diagnosis (after going to the doctor and taking your meds) is to find support resources. I keep saying that the emotional part of you is just as important of the physical side of you and this is yet another example.

First I would ask your doctor for information and then look at the source of the information they give you. For example, at my breast cancer diagnosis I was given a folder of information with resources - including a flyer from the American Cancer Society, and one from a local support organization. Two good places to start. But I was also told about Breastcancer.org which was another great resource.

Second, I would skip Dr Google but would look for information for patients for that ailment. For example, going back to my Rheumatoid Arthritis I found rheumatology.org which is primarily for doctors but also for patients and I found arthritis.org which is more for patients. both provided me good information.

Third, I went back to that other flyer I got from a local support organization at my breast cancer diagnosis. They had support groups! One full of people like me grappling with their cancer diagnosis. What a great place for me to go.

Finally, I found komen.org which had online support groups.... The last piece I needed.

So when you are faced with that yucky diagnosis, work on finding support. Trust me its out there. You just need to find it.

Recently I was told about two young people around 20 who were facing fairly awful cancer diagnoses. They needed help. I quickly recommended a couple of resources for them - primarily Stupidcancer.org. (I love their tag line - we make cancer suck less. If you are offended by that language you are probably too old for them. They primarily work with people from age 15 to 35 or 40.)

It never ceases to amaze me that people with cancer, or something else yucky, try to struggle blindly without any emotional support. Trust me at my second cancer diagnosis, I quickly jumped on the support bandwagon and joined support groups and had a therapist. By the time I was diagnosed with RA and fibromyalgia I already was connected to many support resources.

Trust me your emotions are important....

Thursday, June 8, 2017

Cures

In the past few days I have learned of treatment breakthroughs for Multiple Myeloma and for Multiple Sclerosis - I have two friends which this will benefit. Both of them are very happy to learn about the progress.

The Multiple Myeloma (MM) news is that they have now found a treatment using immunotherapy which seems to put almost everyone into remission. MM is not curable but if patients can be put into long term remission with this new treatment, it looks like it is a step towards a cure. This news was announced at the ASCO conference last weekend.

"ASCO Perspective
“While it’s still early, these data are a strong sign that CAR T-cell therapy can send multiple myeloma into remission,” said ASCO Expert Michael S. Sabel, MD, FACS. “It’s rare to see such high response rates, especially for a hard-to-treat cancer. This serves as proof that immunotherapy and precision medicine research pays off. We hope that future research builds on this success in multiple myeloma and other cancers.”"


The Multiple Sclerosis (MS) news is that using nanoparticles. MS is not curable either but they have now found a way to alter a switch that regulates an immune cell. 

"“I discovered a small binary switch, controlled by a LIF, which regulates inside the immune cell itself. LIF is able to control the cell to ensure it doesn’t attack your own body but then releases the attack when needed.

“That LIF, in addition to regulating and protecting us against attack, also plays a major role in keeping the brain and spinal cord healthy. In fact it plays a major role in tissue repair generally, turning on stem cells that are naturally occurring in the body, making it a natural regenerative medicine, but also plays a big part in repairing the brain when it’s been damaged.

“So I thought, this is fantastic. We can treat auto-immune disease, and we’ve got something to treat MS, which attacks both the brain and the spinal cord. So you have a double whammy that can stop and reverse the auto-immunity, and also repair the damage caused in the brain.”"

I think this news is great. Amazing even. I am glad to see such medical research. These two instances represent big steps towards a cure for those disease. But I am bummed that there is no research yet that will help me.

Wednesday, June 7, 2017

Decision Making

Back in junior high I think, we had a class where we were instructed for the next class to make a list of all the decisions we had made in that 24 hour period. I thought I did it right and came into class the next day with a list of three decisions I had made. I quickly learned how wrong I was.

Another student stood up with his list and it was long - it listed everything from deciding when to leave the classroom the day before, which way to turn in the hallway, whether to got his locker or not, etc.

How wrong was I? Phenomenally. And it was a big learning lesson for me as well.

We make decisions constantly. What to eat for breakfast, when to get out of bed, what to wear, when to shower, what to eat. We make most decisions fairly easily because they are habits or because they are fairly simple. Do I want eggs for breakfast or a yogurt and fruit?

But when we come to medical decisions, they can get very complicated. The first ones are usually easy - does that hurt enough and for long enough that I should call my doctor? Which doctor to call? Then they can quickly get complicated. Surgery? Post treatment options?

For cancer, you can throw in all those fun decisions - chemotherapy, radiation, immunotherapy, and more. Part of the decision making process can include not just whether to try some of the treatment options but how difficult will they be to survive them. Also what about your quality of life during treatment?

We constantly make decisions. Some are just harder than others. We just need to decide what is most important to us at that time and then make our decision.

Tuesday, June 6, 2017

Balancing Cancer Recurrence Fears

So I have been blogging about cancer recurrences and then I find a study that talks about how to cope with cancer recurrence fears. Basically what it comes down to is counselling, support and knowledge.

A study was done in Holland and followed several cancer patients and provided information and support on their cancer and recurrence issues. They compared two groups, one who received access to normal psychosocial support. The other group received blended cognitive therapy consisting of:
  • five individual, 1-hour, face-to-face counseling sessions
  • three 15-minute Internet chat consultations
  • access to an informational website
It doesn't sound like a lot of support but after three months:

"Overall, about 33% of people who received blended cognitive behavior therapy had their fear of recurrence ease significantly, while none of the people who received usual care had their fear ease significantly."

So if you are concerned about recurrence don't hide in your house, go out and get some support. I think support doesn't always need to come from professionals. Sometimes just talking to others with your type of cancer is very supportive in itself. If you are very concerned you need to get some professional counseling.

All this goes back to my point that your emotional well being is just as important as your physical one. 

Sunday, June 4, 2017

More on Olivia

I am beginning to think I am her fan or something as this is my third post about her.... but once again I am blogging about Olivia Newton John and her cancer recurrence. I have another problem with her and her recurrence. This is it in her statement about what her plans are for recurrence:

"I decided on my direction of therapies after consultation with my doctors and natural therapists..."
Her plan is to focus on radiation and natural therapies.... I don't have a problem with natural therapies but I do have a problem with their use without additional medical therapies.

I used to work with a woman who was diagnosed with breast cancer and after her surgeries she decided to use graviola as her treatment, skipping other treatment options. She had a recurrence a couple of years later.....

Honestly after what I have been through I have a healthy respect for Western medicine, Asian medicine, and other modalities such as yoga, acupuncture, reiki, and more. I would not just natural treatments because I think they need to be combined with other treatments. If natural remedies solved everything, other medicines would never have needed to be developed.

I also realize its not my body in question but I can still disagree with her treatment plans.

Saturday, June 3, 2017

Going Back To That Recurrence Thing

With cancer, this is what we all want to know. Will it come back?

The other day, I blogged about cancer recurrences and being on the hook. Of course with Olivia Newton John's twenty five year later cancer recurrence, the media is now full of cancer recurrence information.

Before I start, I need to state that anyone who says they have cancer and then say they are cured after treatment are idiots. You are not cured after a cancer diagnosis, you only can exhibit 'no evidence of disease' or NED. While there have been many cancer treatment advances in recent years, there is still no cure.  Why do you think you need to keep going back to your surgeon or oncologist? They want to keep monitoring you....

So anyway, the media is now giving us lots more details on cancer treatments and recurrences. This will continue until the next big news flash that will displace it. There is a nice long article on cancer and recurrence on CBS now where they interview Dr Deanna Attai of UCLA and Dr Andrews at Hofstra Norwell School of Medicine.

""I would say breast cancer – a lot of these cancers – have become more of a chronic illness than a terminal illness. A patient may do well with bone metastasis. They may need ongoing treatment for the next five to 10 years, but it doesn't mean it's a terminal sentence. With radiation, thankfully, our techniques and technologies have improved. It all depends on how big the area is and the critical structures that have been affected," said Andrews....

Attai said a recurrence diagnosis can be very emotional for a woman.

"It's different for every patient so I do not want to generalize, but some common themes I see are that many women never truly get over having breast cancer. It's always something that's with them. Many women are changed by their experience, but the further out you get, the breast cancer takes more of a back seat. And we tell them to go back and live your life. A recurrence often brings back all the emotions and then some from when they were first diagnosed. And especially if it comes back somewhere else in the body," said Attai.

She said the first question is always, "How long do I have to live?"

Once the cancer has shown that it's gotten outside of the breast to other parts of body, she said there's the potential of dying from the disease, but she tells patients that tests can help identify what's going on and they can discuss treatment options and their effectiveness.

"We stress that we do have a lot of newer agents and many women are certainly living longer. But there's no question that women living with metastatic disease, at least right now, we can't say we can cure patients. We're much better at keeping the disease under control, gaining a remission now, but at this time, metastatic breast cancer is considered incurable. I think we will get to the point with newer, targeted agents, to talk about long term remission," Attai said."

Right now is a good time to be a cancer patient. There are lots of new treatments coming out. I have several friends who have been stage IV with breast cancer for more than a decade. Their quality of life is pretty damn good. 

It doesn't matter how long ago you have had cancer, you need to remember that it still could return. I think you are at a higher risk of getting other cancers as well. Your body may be a temple but it could also have cooties hiding in the corners.

We need to remember we need to be alert to changes in our bodies for changes to talk to our doctors. Even if you call your doctor in a total panic because you could swear you have a new tumor that is going to kill you within a year (yes, I have done that and my doctors did not tell me I was crazy). Doctors do realize that patients are the ones who notice changes first so be sure to speak up.

In the meantime, don't go crazy, just stay alert.

Friday, June 2, 2017

Weird Test Results

We all get these standard medical tests - like a colonoscopy.... I get regular chest x-rays... Why? Because back in the dark ages of my thryoid cancer, they saw a 'thingy' in my lungs. It was a benign thingy but they wanted annual chest x-rays to check on it to make sure it didn't do anything.

So after over 25 years of annual chest x-rays for the thingy, I was told they no longer needed annual chest x-rays for thingy's, they would wait until any symptoms occurred. Then, as luck would have it, I was put on methotrexate for my rheumatoid. As there is a possibility of lung problems caused by methotrexate, I was put back on 'sort of' annual chest x-rays again.

This week I saw my rheumatologist and she realized I hadn't had an annual chest x-ray for at least two years so she said it was time. So I went.

Yesterday the results showed up with a weird comment.... I hate weird little comments from radiologists. I sent a message to my rheumatologist for an explanation. I really hope its a nothing. I don't believe it is related to the original 'thingy' but I do want a definition.

The problem is that once you have cancer, with every weird test result you start to go back on that really bad cancer roller coaster with all the 'what if's' floating through your brain. I just hope I get an answer soon. Dr Google gave me lots of really bad reasons for the cause of this weird comment so I really want to know asap. And I need to remember to avoid Dr Google.

Thursday, June 1, 2017

How Long Are You On the 'Hook' For A Recurrence?

After cancer, we always wonder 'will it come back?' Actually, we don't just wonder, we obsess over this. For a long time, we think every little owie is probably cancer. We can only get our life back on the rails when we learn to cope with this. But still then every so often we still freak ourselves out about something. And life goes on.

But post cancer, every so often our doctors tell us something we don't like and we go back on that cancer roller coaster. Time goes on. Years start to roll by.... We assume we are good because its been a decade or two....

Now I must ask the question 'how long are you on the 'hook' for a cancer recurrence'?

I know that research and the past has shown that thyroid cancer has been known to recur 30 or 40 years later.... How fun. Breast cancer I always kind of thought 15 years or so you are good.

The news told us this week that Olivia Newton John has had a breast cancer recurrence. She thought she had back pain but instead it was cancer metastases. I made a point to look up how long ago was her original diagnosis. That was in 1992. You can do the math. 25 years ago.

Damn.... So my ten years out doesn't mean that much. Damn, damn, damn.....

Wednesday, May 31, 2017

Once Upon A Time, I Was A Healthy Person

I have many friends who, after cancer, get back to their old lives for the most part. I'm not talking about that 'new normal' bull, but just doing normal things like going back to work, taking part in all their family activities and all sorts of regular, every day life things.

Me, I did not get to go back to my regular life after breast cancer. My body had other plans for me. It decided it was time to fall apart.

After breast cancer, I got gall stones and had my gallbladder out six months after radiation ended. That winter I slipped on the ice, landed on my left hand and started all my lymphedema crap.

The following fall my back started hurting. When I realized I was taking OTC pain meds every day, I went to the doctor. I ended up being diagnosed with degenerating disks among other things. Later I sprained my ankle badly that included bone chips. I also hurt my right knee, again - previously injured skiing in 2001.

That went on fine until three years later when I was diagnosed with rheumatoid arthritis and fibromyalgia which is a whole barrel of fun. In 2015, I fell in my backyard and managed to tear my ACL in my left knee.

What else? I don't know. I have had basic dental stuff, possible recurrence with thyroid cancer that turned out to be nothing, and I can't remember anything. I have been to PT probably five times for different ailments.

So, I am not a healthy person post cancer. I have a very dilapidated body post two cancers. I must be 'healthy' due to all the medications I take and the doctor appointments that I have. In the first five months of this year, I have had 27 appointments with doctors and dentists.

I'm still here. I may not be the healthy person I once was. But I am here.

Monday, May 29, 2017

Is Moving On After Cancer A Myth?

I am approaching my ten year anniversary of the ten year mark after my breast cancer diagnosis. Am I supposed to celebrate? I think so but I am not sure how much of a celebration it is. It doesn't mean I can say it is gone for good. It just means that in the ten years since I was diagnosed with breast cancer and I am still here.

Now I do know that is a good thing. But am I supposed to celebrate? But I don't feel like celebrating. I am not sure that I should celebrate. I certainly won't be having a party.

The last ten years have been a growing time for me emotionally (and for my waistline). I have had many new experiences that I would never have had without breast cancer. Some I can appreciate - like learning to fly fish or making lots of new friends - but some not so much - my first CT scan, chemotherapy....

I have met many wonderful people during these past ten years. However, I have lost many of these new friends as well to cancer. I have also held hands, physically and emotionally, with many people who I never would have met, to help them and to help me coping with cancer. Some of that is good, but some of that - I still miss many friends.

My breast cancer diagnosis was not my first dealings with cancer. I had been diagnosed with thyroid cancer twenty five years and some months earlier.

It took me a long time to get my life back together after that diagnosis but I was never the same. Actually I don't really know. I was diagnosed at the age of 19 while in college so was never really an adult on my own without cancer. I don't know if I would be different if I had never had cancer because I never had the opportunity. It took me so long to deal with that cancer diagnosis, I don't think I 'grew' that much.

Since I can't tell if I had grown emotionally after that cancer diagnosis because I have no comparison. And am I any less of a person than I would have been? How much did cancer change me? I have no idea. Again, I have no comparison on that how can I tell how much my cancer diagnosis changed me and my life again?

I go back to my question - is moving on after cancer a myth? I don't know. I don't know how much I have moved on  because I can't tell how much I changed in the beginning.

All I do know is that once someone says 'you have cancer' you are changed. Your focus on life is very different. You question what is normal to every one else - life insurance in case anything happens to your children (if you can still have children), or changing jobs and getting new health insurance (with a pre-existing condition). Or planning for the future? Why should I save for retirement if it looks like I probably won't be here for it?

Personally I believe that anyone who says you can move on after cancer, has never had cancer. They are the same people who came up with the soldier/battle/warrior/s-word stuff. But I don't have the comparison so I can never be sure.

Sunday, May 28, 2017

Distractions

I realize I haven't been blogging much for the past month or so. We went away for a weekend, we are on our second set of houseguests. This one came with a dog who freaked out one of our cats (who should have stood his ground and growled at the dog and he would have hid because he is really scared of cats).

I have also been dealing with lots of fatigue. What is fatigue? When you need 12 hours of sleep each day and then make it through. I also keep getting myself in places where all of a sudden I am so tired I can't function.

An example is this past Thursday. I got up and went to the grocery store and library in the morning. I didn't carry in all the groceries - only the perishables. I relaxed for a couple of hours and went to my knitting group. On the way home I stopped at a garden center for more vegetable plants. All of a sudden I was so exhausted it was almost too much to walk to my car and drive home. Then I had to lie down for about two hours just to recover to make dinner.

There is one thing of needing sleep. There is another that is too tired to function and not needing sleep. Just needing down time. Thursday afternoon I couldn't have slept but I just needed to be off my feet, watching bad tv in bed. (What is bad tv? TV which provides no redeeming qualities and is barely entertaining.)

I have had almost two weeks without doctor appointments - I haven't had one since the 10th. But this coming week I have the dentist, rheumatologist and someone else who I can't remember. And I need to get my bloodwork done on Tuesday.

I do not have that busy a schedule and sometimes even get together with friends. I spend a lot of time at home weaving on my loom and knitting. I also get to the library regularly....

Just a lot of distractions in my life. The benefit is the distract me from the state of my health. I am and will always be the most unhealthy person in my family. I have more health problems than my parents and they are in their 80s. My siblings are disgustingly healthy as well. My husband is definitely healthier than me too.

But all these distractions do lead to a basically happy life these days. I think that is the most important thing.

Thursday, May 25, 2017

What To Do When A Family Member Has Cancer

Its different when a friend has cancer than when its a family member. When you live in the same house as someone with cancer, you need to be a bit more proactive and protective than when its not someone in the same house.

For the person with cancer, they are probably feeling a bit stressed, to say the least. They may isolate themselves or they may act in an uncharacteristic manner - drinking more, eating more or less, etc. Their whole being is probably focused on their diagnosis and how they feel, which may or may not be very well. They are contemplating their odds, their upcoming treatment, etc.

This is not a time to make undue stress on them. They need their time to regain some emotional equilibrium. They do not need reminders to take their medications, eat food, or interact with people. You can ask once but do not nag or stress them. They are not in a good place.

The most important things that they need right now is support. They may need trips to the doctor. They may want help finding more research on their health.

They do not need aggravation. Trust me. I've been there.

Family relations can be complicated. This is not a time to complicate them further. This is a time to uncomplicate them so quit all the drama.

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.