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.