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.

I Don't Heal

Part of one of the many 'joys' in my life is that my body heals very slowly. When you have RA or other auto-immune disease your treatment often includes a immune suppressor, such as Methotrexate. I get a weekly injection of it (courtesy of my husband). It suppresses my immune system so am very vulnerable to germs and heal slowly. A cold doesn't go away in a few days, it can take a few weeks and can result in ear infections and other 'fun' ailments.

A few examples: I have this stupid ass wart on my foot that the doctor froze off September 1. Of course it turned into a big blister but is it healed yet? No. Its only 49 days later and its not healed. It still has a scab covering an open area on the top of my foot. I was supposed to have a follow up today but I cancelled it because there is no point. 49 days, that would be 7 weeks in normal speak, and I am not healed.

I had a periodontal deep cleaning almost three weeks ago. I went for a follow up last week and it was barely healed. And I had an area that was starting to cause new problems that the dentist had to lean up.

My husband had a cold last week which he nicely shared with me. I am still sick. I have been skipping my methotrexate shots in hope that I will heal faster but it doesn't seem to have made a difference.

This also can make a difference with any 'fun' medical 'misadventure'. Recovery can be slow.

Today I feel like crap still. I really would like to go to the gym and burn off some flab after traveling and eating badly for two weeks. But I am still not sure. I feel okay for a bit and then not as well. I debate - do I stay in bed or do I pretend I am healthy and go to the gym? 

Taking back my life

Over the past few years, my life has shrunk. There are many things I can no longer do - hiking, biking, camping, skiing, vacuuming. I have decided it is time to take back my life.

I used to go for a daily walk, rarely skipping a day. A habit started years ago. I would walk in the rain and snow and heat and cold.

In the spring of 2007, I was working at a small company near home. I started walking at lunch with a co-worker once or twice a week. I left the job but kept walking weekly with her, through cancer treatment. We would walk the steep hills to keep in shape. We kept going. Some weeks would skip because one of us was traveling or busy, or my back hurt too much.


Two winters ago, she and her husband started spending two months in Utah to ski so we stopped for the time. Last winter she went for her two months in Utah, we walked once after she came back in the spring. Then my back started hurting more, and my hip (bursitis). We haven't walked since.

I have gone for a few walks since then but nothing as regular as I used to. I do go to the gym and do an hour of cardio three times a week as well as weights and stretching. But long walks result in bad effects - including hobbling home and spending a few hours or a day in bed. I find I don't have the stamina for it. My muscles aren't used to walking any more.

I am determined to start going for regular walks again. I do need a day of rest after working out. But I have a plan. A dastardly plan. My husband has no idea what he is in for.

We are going to go for a walk every weekend. We have started already. We went for a walk at a nearby wildlife refuge last weekend. And on Saturday we went for a walk in the wind and cold on the hills around our neighborhood. This coming weekend we will go for another walk.

I want to walk enough so that we can go on hikes again, something we really liked to do. One of our first dates was a hike along the edge of a cliff on western MA where we got hit by a thunderstorm and literally soaked to the skin. I would love to be able to hike like that again. It may take a while but I do want to hike again. I enjoy being out in the woods. Its part of taking back my life.

I am tired of watching things I enjoy slip away. I'm taking back my life. And maybe I'll lose some weight too.

Lessons from famous cancer people

Just because someone is rich and famous and survives cancer, it doesn't mean they can invent a new way to cure cancer. There are a few I would like to mention here. I have nothing against these women at all but am concerned about the weight their name carries and how many followers they have simply because of their fame.

Suzanne Somers - she has a book out on chemo free treatment of cancer based on interviews with doctors. I'm sorry but there is no way to globally dismiss or prescribe any type of cancer treatment without a one-on-one conversation.

Farrah Fawcett declined conventional, FDA approved cancer treatment which would have required major surgery and resulted in needing a colostomy bag for life and went to Germany for a different treatment. Which unfortunately was painful and did not work in the long run. This reminds me of the families who went to Mexico for Laetril treatments in the 1970s. If its not approved here, there may be a good reason for it. And running overseas may not be a good idea.

In a recent article in AARP, long time friends, Melissa Ethridge and Sheryl Crowe talk about their cancer treatment successes. While I found the article interesting, I was not too thrilled with the last image:

Melissa 'turned off' her BRCA gene by eating better. And Sheryl meditates so that her cells function at a higher level.  I'm sorry but you can't turn a gene off. Its part of you. And maybe meditation helps you but it doesn't mean it can cure cancer. Being healthy can help you reduce your risk of cancer but don't think daily meditation will keep you healthy.

I can go on. These four women are ones who first came to mind. If you are rich and famous you have access to the best care and the best types of supplemental treatments from personalized workouts, professional chefs, and expensive organic food and personal doctors. But that doesn't mean your treatment is going to work for anyone else. And please be clear on that to your fans and followers.

Healing and methotrexate

These days a little thing can do me in for a few days or even weeks. I have had a cold that started last week and lingered into this week. I assume its the same one as opposed to a new cold (or the flu or Ebola). But I am slowly getting better.

I was a good girl and did not take my methotrexate last week - it compromises my immune system and I am supposed to skip it if even a tiny bit sick. I went to the doctor on Saturday for an infected toe. Not an ingrown toenail but an infection along the side of my toe. I have been on antibiotics since then. So this week I also skipped my methotrexate. Again.

Per my doctors since I have been on MX for so long, a certain level has built up in my system. But if I keep skipping it, how long until my levels start going down and my RA starts acting up?

For now, a little cold can turn into a lot more. I just wish I could get heal like a normal person.

When diagnosed with cancer, get a puppy

I read a really good book last night. The whole thing. 83 pages in a 5"x 8" book so its a very quick read. 'Survival Lessons' by Alice Hoffman. Yes the famous writer Alice Hoffman.

She had breast cancer 15 years before she wrote the book which came out last year. In the introduction she tells us it is her personal path to healing on her own terms. The book then shares what she learned during the course of her treatment, looking back after all that time. I hope I am as smart then as she is now.

In addition to telling us to get a puppy during treatment, she is full of good advice including 'choose to plan ahead' and 'choose to dream'. These are two very important things we often forget when coping with a cancer diagnosis.

It made me think in a good way. I will return it to the library shortly so others can benefit from it. I might reread it before I return it and I will definitely reread it again in the future.

What was I thinking?

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

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

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

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

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

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

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

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

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

Oh CRAP, I did do that!

I am not a creative person at all. I can draw stick figures, barely. At one point I was in 4H and Girl Scouts and learned to sew, knit, crochet, embroider, and needlepoint. I might have won a 4H ribbon or two but they were given to all entries. That phase of my life changed around Junior High when I moved on to more esoteric pursuits - boys, figure skating, etc.

A few decades later, my brother and sister in law started having children. She, my sister in law, is a very crafty person. I enlisted her help in picking out yarn and a pattern to make a baby blanket for her second child - my nephew who is now 14 and nearly 6' tall. That baby blanket was never finished and now would only be of use to him for his children in another 15 years or so. It is now in a bag somewhere....

Then I got married, life got chaotic, I got cancer and I guess I was annoying my friends so much while I was home dealing with chemo, that one of them, Judie, said to me 'you need a hobby'. I agreed, calling friends while they are at work, reading bad novels, and watching bad reality television wasn't going to get me through chemo any easier.

I went back to crochet. I got some yarn and a few crochet hooks. Then I got more yarn, some knitting needles. I discovered the evil benefits of the sale section of yarn stores. Everyone in my family got a scarf for Christmas that year. Then all my friends got a scarf for their birthday.

Then I discovered I am addicted to yarn and knitting and crocheting. I have bags of finished products. I have more bags of UFOs (unfinished objects). I have even more bags of yarn (an unofficial member of SABLE - Stash Acquired Beyond Life Expectancy). I have switched to larger projects to slow down my production as I have enough scarves and cowls knit for a couple seasons of holiday craft shows.

I am finishing a knit crazy child's blanket where I will sew together a multitude of triangles and finish with a pale yellow edge. I am just starting a patchwork blanket for our bed which will be in squares of the same yarn knit in different patterns sewn together. This should take me most of the rest of the summer.

I like knitting and crocheting - its relaxing and non-fattening. 

Some where along the line I would often see information on creative arts classes to help people with cancer heal and cope. I would say that is so not me as I only draw stick figures. Besides I am not someone who feels the need to scrap book, decorate my house with handmade 'what-nots' (or dust collectors). I am not creative. I don't need those classes.

Slowly it has dawned on me. CRAP, I did do that. I did use creative arts to help heal and cope. And I didn't need a class for it. I just need more yarn stores for more yarn to fuel my addiction and increase my stash.

Positive Pets

"Pets provide comfort and relieve stress from cancer." I can agree with this. Every day when I was in treatment I would hit the 'wall' and need to rest and gaze at the crappy day time tv shows (this was before the DVR) with glazed eyes, a cup of tea, and the cat sitting next to me. He would very patiently snuggle when I wasn't feeling well and absorbed tears and commiserated with me on the state of the world (if his food dish was empty). He is no longer a spring chicken at the ripe old age of 17. He is slowing down.

In the vet's words at his annual check up a few weeks ago, his blood levels are mostly fine but he will probably sleep 97% of the time these days. He does. He greets us at the door each day when we come home (provided he has finished his latest nap) as if the world is coming to an end because he is hungry and needs attention. He is the 5am cat - his definition of the proper breakfast time. He is adept at sneaking into the bed in the middle of the night and we wake up to find him with his head on the pillows, his body under the blanket, snoring away between us. Occasionally he acts like 'psycho kitty' and runs around like a crazed kitten on catnip for a few moments but we know he won't be with us forever. We already plan on adopting two cats after he is gone - one for each of us.

Back at my first cancer diagnosis, I lived at home with my parents and we had three cats, one of them, BC, was mine - she stayed there long after I moved out - I got her while I was in high school. She lived to be 24 and died in (I think) 2001. BC was also a comfort as I went through surgery and recovery.

Medical research is finally catching up to what is known by pet owners everywhere: "... found that pet owners were more likely to survive at least a year after hospitalization for a heart attack or chest pain compared with non-pet owners. Among pet owners, 94 percent survived compared with 72 percent of those who didn’t own a pet."

My non-medical advice is if you are diagnosed with something yucky like cancer, adopt a pet if you don't have one.

Writing helps healing

I could have written this. A woman writes about how writing helps you heal.

A few points here:
- Serious upheaval in one's life associated with lowered immune function, an increased risk of heart attacks
- People who can write about life traumas seem to have fewer health problems, recover better
- Being able to see trauma from different points of view indicates a better mental state

The author is a freelance writer so she obviously has better writing skills than me (I was told by a high school English teacher that I had terrible writing skills) and she also had breast cancer. So she wrote an article about writing your way through medical issues.

Writing is something that allows us to express our thoughts and get them out there and out of our minds. Where I work, Center for Cancer Support & Education (www.centerforcancer.org) we have offered a writing program for those with cancer for several years. This year we are adding a second writing program focused on family members and care givers of those with cancer. This idea was brought to us by a journalism professor who said that she sees it in the kids that she teaches - their emotions come out in their writings and often they are about someone close to them who has or had cancer.

These are more formal opportunities for coping with the emotional aspects of cancer. But then there are blogs (like mine), or CarePages (www.carepages.com), many other services, and even written journals where people write their thoughts out. Many of them are started at their diagnosis and continue only through treatment. Others are continued for years (will I ever stop????). Others end badly, with a post by a family member of the unhappy ending.

But the written expression helps thousands each year in coping. It is not right for everyone and that is their personal choice. But emotional venting in writing seems to help us heal so I'm going to keep going.

Waiting for the medical magic wand

Still waiting. Yesterday I went back to my stupid ankle doctor (my ankle and I are stupid, not the doctor - I sprained my ankle by thinking I was smart and could look over my shoulder while walking). The last time I saw her six weeks ago she gave me a cortisone injection in my ankle to see if it could help drain some of the fluid left in it when the ligament and tendon tears healed up. It worked for a bit but then my ankle started hurting again. Her response to that was that's about the length of time that an injection will work.

The only thing she can do is if I still have pain in another six months (two years from the original injury) she can go in with a scope and clean it out. I have had enough surgeries thankyouverymuch. So as there is still no medical magic wand to heal me, I am stuck with a swollen painful ankle.... It matches so many other body parts with injuries that decline to heal - the partially torn ACL that decides to act up periodically and can only be cured by big time knee surgery, or the tennis elbow that doesn't like going to the gym and forces me to wear my stupid wrist brace, or my bursitis hips that also would prefer a life of lethargy.

Her parting words to me were to work through the pain and ignore it - the best way to heal it. Can't I just have a magic wand instead? One that works on cancer and all my other ailments too please.

Caregivers have feelings too

I have been pondering this one for a few days. A woman who has had breast cancer twice and had one mastectomy followed by another wrote into an advice column. She was writing about how her husband wouldn't have sex with her since her last surgery 3 years ago. The advice column said she was right in going to counseling because her husband was probably still upset about her second round of breast cancer and surgery and it wasn't about her loss of breasts.

Readers also commented on it. One said said he's having an affair. Two said counseling. But overall the answer was he was too scared of losing her and traumatized by it.

I have been on both sides of the cancer diagnosis. It is traumatic. If you are the patient, its mostly focused on you. Very little is focused on the caregiver.

Once the physical healing is over, the emotional healing is still going on. My husband and I have had many conversations from both sides of the diagnosis about life insurance, what if one of us dies, what would you do, that end of life conversation, and more. all the taboo topics are no longer taboo when you the c-word shows up in your life.

The woman who wrote in said her husband has his own business and works 7 days a week so he doesn't have time for counseling. Maybe his work schedule prevents him from seeing that his wife is doing okay these days. Maybe if he saw how well she was doing that would help him lose the feeling he might lose her. Maybe burying himself in his work he is hiding from his feelings?

I am no psychologist but he needs some care too.

Would you want to know?

Science is at the stage where now they can promise all sorts of things by analyzing your DNA. (This always makes me think of a cross between Igor in Dr. Frankenstein's lab with bubbling beakers and a weird 1950's black and white sci fi movie where they are trying to find martians among the residents of a normal neighborhood. But I digress.) So do you want to know? Do you really want to know that you are more likely to get cancer or any number of other life threatening or changing ailments? Really? Are you sure?

To me its kind of like knowing that you are going to die in a car accident in a certain number of years. Wouldn't you live with a feeling of doom? I think we all know now that we are going to go at some point but I don't know that we want to know when or how ahead of time.

I was surprised to hear that Walgreen's was going to offer a DNA test for sale. They have since decided not to and the test is not yet FDA approved. But a $20 DNA test available over the counter in your corner drug store? Isn't that a bit much. By the way, its $20 for the test and then $79-$249 to get the results. Its not an instant test. You have to spit in a tube and send it to a lab.

Now, what if I had known how my medical life was going to turn out ahead of time? No thanks, I don't think I would have wanted to know. And at this point, I really don't want to know anything about my medical future other than everything would go away - which unfortunately it isn't. Some things will - my ankle should heal - but my arm and back aren't getting any better anytime soon unless there are some new medical breakthroughs.

Yesterday I did get up and meet my sister and friend in the Avon Walk but I did call them when I was on my way to make sure I could find them in the crowd. They declined my offer of donuts (a healthy treat to be sure but if you are walking 40 miles you can spoil yourself) but we did connect and I walked with them for a little bit. Overall $5.8 million was raised by 2500 walkers.

I did come home to attempt to do some gardening, attempt being the operative word. Most of my plants are not yet in the ground and my back hurts. Today more will go in the ground but my husband will do the work after he gets home (but don't tell him I have plans for heavy labor). Today I have a meeting for volunteer work, work, and an appointment. I will motivate and go for a walk first as it is a beautiful spring day.