After Cancer Coping With The Instant Cancer Bond

So after you get diagnosed with cancer, it seems like everyone you know has cancer because:

You have met a lot of other people going through cancer treatment while hanging out at chemo, in support groups, your oncologist's waiting room, etc. That part is kind of nice. You find out you aren't alone in this cancer business. You have an instant bond with new friends.

Then you start hearing about all these other people who are diagnosed with cancer. You feel like you are supposed to be their friend too - because of that cancer bond thing again. Your cancer friends tell you about everyone they know when they are diagnosed with cancer because they have cancer and you have cancer so you can talk cancer all the time. And then it explodes, you meet and hear about more and more people with cancer and this cancer bond obligation doesn't quit. If someone you know  knows someone else with cancer, they expect you to become new best friends because you have that cancer bond so you must be alike.

If let unleashed, you will become swallowed by guilt that you are supposed to be friends with cancer people everywhere. But you have to learn to control the guilt so it doesn't swallow you.

I remember in college, I had thyroid cancer between my freshman and sophomore years. It was sort of an open secret - one some levels a lot of people knew I had cancer but no one talked about it. Back then cancer was evil and you were guaranteed to die soon.

Early in my junior year (I think), a male student I knew showed up at a party with another male student who I knew but not very well - who was now in a wheelchair dying from a brain cancer. It was a small school but we didn't have much in common. But now wait, we both had cancer so we could bond. How awesome! Not really. I felt it would be rude to excuse myself too soon because no one else wanted to talk to the guy in the wheelchair. But I also felt very much put on the spot because this instant cancer bond was there.

Finally I think I excused myself to get another beer or something. But I had felt trapped. Our mutual friend had trapped us together hoping to improve his dying friend's life by taking him to a party.

It was just awful. I felt guilt but there was nothing I could do. I did not want to talk to this guy anymore than he wanted to talk to me, we were not ready to compare cancer notes.

Another part of cancer coping is learning to manage that instant cancer bond. You can't let it suck you in so you get attached to every person in the world who has cancer (through that six degrees of separation thing) and bear their emotional burden of cancer. The guilt is killer.

While its nice to meet people with cancer and talk to them, you can't let it take over your life.

Coping with Other's Cancer

When you are diagnosed with cancer, you are faced with the World of Oncology. Inside that world lies the answers to your questions and how to keep you alive. As you go through diagnosis and treatment, you get to educate yourself on your illness and what's involved in getting through it.

Oncologists have to go to medical school to learn all this crap. Us patients get the express pass and learn it much faster and more intimately. Doctor's say 'may cause nausea and hair loss'. We know it means we will watch our hair fall out as we shop for a wig and try to keep something in our stomachs. We learn what the truth really is and how to translate their words. A year into treatment, we are pretty educated in 'oncology' and can help others.

My father was diagnosed with cancer in 2013, I got to be his entry into the Great Oncology Wall. He was diagnosed with Waldenstrom's lymphoma, a very indolent type, which is only treated when symptomatic. He was symptomatic so he started chemotherapy which ended up destroying his immune system.

Through all of his treatment my father used me as his source of information. Where to find good information on his disease and its treatment?  (and, no, Wikipedia is not a good source of medical information.) At every proposed test or medical misadventure, he would call me and ask me if I had had it and what was it like.

When his veins were destroyed through chemo, he had to get a port.When  he got his port, his next question was 'when do I get it out?'. The doctors wouldn't say anything. Finally, I said 'after you don't need it for six months, you can ask your doctor about getting it out'. He pondered that and was fine.

In May 2017 he was diagnosed with pancreatic cancer. He asked me to come to all his appointments so I could 'translate'. I would bring my list of questions that I thought we needed answers for. He didn't always agree with me but I still go the answers. I thought we should ask the oncologist 'what are the chances that this chemo protocol will work?' when he insisted there must be more chemo options and wanted to continue to try treatment. He didn't like negative answers to that.

He also cracked jokes all the time with the nurses and doctors. He criticized my wheelchair driving abilities but I complained he was the one who taught me to drive. He also would introduce me to his doctors as his daughter with more ailments.

Last fall he stopped asking me to go to his oncology appointments because I agreed more with the oncologist than with him about continuing treatment. But after three CT scans showing continued tumor growth (he would call it 'they are going forth and multiplying'), he finally asked me to take him to his fourth CT scan and following oncology appointment again. He was starting to feel weak and confessed that because of the number of meds he had to take as he was allergic to the CT contrast he wasn't supposed to drive himself. (He had selective hearing for medical advice he didn't like.)

Before his appointment, I had a discussion with him about what the oncologist might say about what the CT scan might find. We talked about quality of life and maybe it might be better without the dragging down of chemo might be better. Because I asked my pushy questions, and agreed with the oncologist that there really weren't more options for him, he agreed to stop chemo. It was a whirlwind and I think he was pleased.  It meant less doctor appointments which were beginning to tire him.

But it also meant that we moved on to his next stage in his cancer journey, when the hospice nurses showed up and could answer many more questions honestly than I was able. But he kept his sense of humor to the end.

For the past year I have not written about my father's cancer. It wasn't my story to tell. But now I am able to share and write through some of my stress. I will continue to write to help me cope better.

Apps Aren't Helpful

I found an article in Cure Magazine (if you have cancer and aren't a subscriber, you are missing out) on this 'cool' new app for people living with cancer, called LivingWith. Its supposed to help those of us with cancer in dealing with their disease and its treatment.

'With the number of moving parts associated with a cancer diagnosis and its treatments, patients now have a “one stop shop” to help them navigate their journey.'

An app? Seriously? How can an app do that? I am skeptical to start. First, are you sick and dealing with your cancer and you need to find an app and start using it to communicate with your friends and family. Also, do they want to use an app too? And are they online all the time so they would see requests and updates. 

'The app allows patients to create a tight-knit circle of friends and families to stay connected and easily update loved ones; send requests to people asking for help with daily tasks; track mood, pain and sleep; and keep track of questions or important information for oncology team appointments.

And its all connected to a website. And what does this website do for the patient? Well it can help the caregiver.

Patients, caregivers and health care teams can download the app for free, using the Apple or Google Play stores, or by visiting the This Is Living With Cancer site – which is the main hub for the program designed to share inspirational stories and offer patients and their caregivers an online tool to help.

Oh, and they can send you selected, or their fancy word 'curated' information. This means they are mining the information they send you and then selecting what to send you. 

“They are able to self-identify their tumor type and then start getting some curated information over time,” said Basavaiah. “It is not just for the patients. It is for the whole team around them: the health team, caregivers, their support network.”'

Did you see that the app wants to connect with 'the health team'? Is your oncologist going to sign up to be on the app with you? Do they seriously think medical professionals have time to check on their patients through an app?

I even downloaded the app to try it out. The first thing it wants is for you to connect with other people. So you need to get your friends and family on it before it can help you. 

I did go to their website to see what was on it, other than pushing the app. I went to the Cancer Specific section and selected breast cancer. They only had links to breastcancer.org, American Cancer Society, and Susan B Komen. That wasn't very helpful. It is depending on other sites to provide the information and doesn't seem to 'curate' an yof it. You still need to dig through those sites for information. And it only had information on nine types of cancer.

I also went to the news portion of their site and it had articles on nutrition and coping with cancer treatment - the fun stuff like nausea, getting enough nutrition when you can't keep anything down, etc. But none of the articles I read were very detailed or provided much solid information.

So I tried it. I was on their website. And I can say I would not bother with it at all. Simply not worth the effort. I think that even if you are someone who is online all the time and just diagnosed with cancer, I am not sure it would be that helpful at all. Nothing seemed to be focused to young people with cancer - who are the most likely to be users of an app.

So my rating is one star out of a possible five. I wouldn't suggest recommending it to anyone. 

A Good Book Ruined By A Bit of Reality

I am a bookworm. As a child I always wanted to go to the library and didn't mind that if I read my newly selected books on the way home I might start to be a bit woozy from the wiggly New England roads. (Highways are much better for car reading.)

In times of stress (read 'medical disasters' among other things) I often turn to books as my personal form of avoidance. This was fine until my medical maladies kept interfering with my reading enjoyment. That would really suck.

During college, after thyroid cancer, with my small paperback book collection, I would avoid studying or read in bed something less enlightening than any required reading. At point, I remember I had a book I really was getting into, something about a young woman and her life.... and she needed a heart transplant or could die... That was enough for me. I had a cancer diagnosis and was trying to deal with the same issue - I could die. I remember throwing that book across the room and giving up on it. It hit too close to home for that time in my life.

It took several tries and several years before I could finally read it. But it was a good book ruined by a dose of the mortality of man. To this day I hate it when that happens.

Shortly after my breast cancer diagnosis, someone recommended to me that I read this book written by a breast cancer patient. For the life of me I can't find it now. But I did like it. The author was writing the story about her breast cancer journey. She was a cartoonist so she wrote it in cartoon format. From diagnosis through treatment, it talked about everything - scanxiety, chemo side effects, etc.

I really enjoyed reading it. Until I got to the part where she died.... And it was finished by her husband. I was very upset.

Since then, I have been very selective on what I read. Sometimes it seems that book and book and TV show after TV show are about someone's cancer journey - good stories ruined by a bit of reality.

I found a library book this week, Virtually Perfect by Paige Roberts, about a woman who was a chef and had a TV show on the Food Network until it all falls apart. The back cover blurb promised a story about her summer adventures as a chef of the very rich and who she reinvents herself. It looked interesting. I love books about chefs because they talk about food - which is something I could talk about and eat for ever and ever. At no point did it realize it included a secondary plot.

Twenty pages into a 300 page book there is a hint about her mother's health. And presto, the secondary plot is exposed as the story of the mother's breast cancer journey and how she tried to figure out how to tell the star, her only daughter, about her breast cancer. The second plot appeared and left throughout the novel.

At first I was a little annoyed as to how a good story was being ruined by the cancer story. But then I discovered it was handled extremely well. It showed the range of emotions of how do I tell, I need to tell her, but no I don't want to ruin her summer, to no don't tell her yet. A breast cancer story was there but it was a subplot. I could handle that.

This time I decided it was handled so well, and perhaps I have come further along emotionally, that I ended up enjoying it. And would recommend it.

Maybe i won't be so selective about books I read in the future. Cancer won't drive me away as often.

Doctor Questions

We are always told to write down your list of questions for your doctors and even bring someone to write down the answers. This can be appropriate for when you are first diagnosed with something nasty. But it doesn't hold true for regular follow ups with  your other doctors.

Over the years, I have learned not only to bring a list of doctor questions to appointments. But I have also learn to break it down into as few as possible, into two categories.

Category one is for the list of issues you have noted since last seeing them. For example you had the flu in November for ten days. Or have been under a lot of stress from work recently.

Category two is for as few questions as possible. Like three if you can do it. For example, if you were seeing your cardiologist:

• What was my latest test result and what does that mean?
• What are my treatment options for now?
• What is my prognosis/next steps?

They may sound simple, like in the 'duh' category, but they are the ones you really want to get answered and take note of the answers.

I can't tell you how many times I got to my doctor appointment and have a huge list of questions and only get through the first few. Prioritize. Keep it simple. Your doctor is probably short on time so you can't overwhelm them with too many things at once.

However if you have a huge issue, you need to make sure that is the main topic of your conversation. Its your appointment and you need to make the most of it. So be efficient.

Giving Back

Or helping yourself while you help others. After going through cancer, or other nasty medical misadventure, you are traumatized, and, as in the words of Arlo Guthrie:

"...you get injected, inspected, detected, infected, ..."

You do not have fun for many months as you watch your hair fall out, your blood counts go up and down. You also follow your tumor markers more than the stock market, try to figure out how to get rid of your 'chemo pallor', and lighten up any surgical scars. At the end you feel like you have been dragged through a swamp, up a mountain, and under the proverbial bus. 

You spend a lot of time trying to find the rumored "new normal" and crawl around dealing with PTSD. At the end, you are you again but not the same. There is a lot of coping involved and it doesn't end overnight.

Since my second cancer diagnosis I have spent more time trying to cope than I have ever done anything else in my life. One thing that has been very helpful for me, because of all the cancer crap I have had to deal with in my life, has been to give back and help other people who are coping with cancer - or just plain 'giving back'. 

In the past three weeks or so I have been connected with three people who are coping with cancer. They are completely disconnected from each other. But I am trying to help them cope. 

How can I help them? I am not a doctor. I am not a medical person at all and do not claim to have any medical or psych/social training. But I do have experiences to share. Most medical personnel have not been through cancer so they cant talk about it from my side of the street.

I can talk to them and help (I hope) them cope with what they are going through. I can help them find resources to give them more information (instead of listening to Dr Google or reading wikipedia). I am also living proof that someone can live through cancer twice. 

What does all that give me? It gives me the opportunity to stay connected with the cancer community. I can never ignore the fact I had cancer twice and those thoughts never leave my head. By helping others, I get a sense of satisfaction that I am doing something good, something that helps someone else. 

In addition, I am not trying to hide my real feelings about cancer by burying it some place where I don't talk about. I can't hide my cancer feelings so it does me a world of good to use them to help other people.

So if you have cancer, go find help if you need it, or if you can, go help someone else who would benefit. Do some good by giving back.

Hibernation

I think today and tomorrow I will hibernate. Today is supposed to hit 28 degrees, the first time over 20 degrees in over a week so I might go out for a bit. Overdue library books might motivate me. The cats are going out for a bit. Tomorrow we are due to get a foot of snow. We will both be hibernating with the cats. Friday I will go to the gym and have a friend over for tea.

Hibernating is good and bad. The good thing is I don't go out and slip on the ice and snow and I won't get frostbite. On the down side, it does not help my stress levels. Hibernation can mean isolation. Today I am home alone. Tomorrow, I assume with the weather forecast, that my husband will be home as well. We will 'undecorate' the Christmas tree for fun.

Another portion of my self imposed isolation is lack of people to talk to. Yes I talk to my friends on the phone but most of them work. Thus I don't spend a lot of time on the phone during the day.

I do have a therapist to talk to but I actually haven't seen her in months - September to be precise. I had an October appointment but I couldn't drive so I cancelled it. Then I was put on the cancellation list and they would call me regularly to ask if I could come in for a cancellation that day. Unfortunately I still wasn't driving. Finally I got an appointment for December. Then I got a cold so I cancelled it. Now I have an appointment for the end of the month. Maybe I should call today and see if she has any cancellations...

Maybe I will find a new therapist closer to home. Who has more availability. And who clicks with me. I liked my old therapist but she retired. She 'got' me. She had had breast cancer and had psoriatic arthritis so she could understand where I am coming from. Also she was good at cutting through all the bullshit to help me figure things out.

I think I need a new one.

But first I need to get my day started. I have a list of things to do (if I can find the list). I need to learn to cope better so my hibernation doesn't overtake me.

Blogging In The New Year

I have many plans for 2018.

For my health, I hope to have a healthier 2018 than 2017 was. Honestly I do not think I can deal with any more ailments. I hope I can be healthier.

For my blog, I hope to go back to blogging regularly. I started blogging about breast cancer and have continued to blog through the roller coaster of the rest of my health. This all started in 2007, more than ten years ago. While I have been blogging almost every day, in the last few years I might have slowed down a little and skipped a day here and there.

Then last summer, I made the decision, due to travel and other plans, to take my blog off line for a few weeks. While the internet can be a wonderful thing, it can also be stressful and depressing. Many mental health professionals tell people to stay off the internet. So as I would be traveling and would not have access to the internet, I decided just to take a break.

Unfortunately I have not gotten back into regular blogging since. Blogging provides me emotional support. It provides me a way to cope with my feelings and emotions as I deal with my health and other issues. I need to get back to regular blogging to help myself deal with life.

For my stressors, I hope to get back on top of them. I have a couple of significant issues going on in my life that I am not ready to deal with - mostly because they are not resolved. Both are beyond my control. And one of them is not my story to tell so I am not going to blog about it until it is resolved. In the meantime both cause me stress. And I need to work on my coping and get on top of them.

Life with cancer and other medical issues is not easy. I am unique in that my pile of issues is not common. I can find support in many areas but unfortunately not in a single one. This requires me to spread myself thin in coping.

But my goal in 2018 is to blog regularly throughout the year and thus cope better. Here's to a Happy New Year and more blogging!

Celebrate the Holiday, Without the Cancer Advice

Over on Cure Magazine, Martha Carlson, who is living with metastatic breast cancer, provides a bit of advice on how to enjoy the holiday, even when confronted by the unwanted offers of 'advice' from the 'helpful' friends and family you see at family gatherings. 

Everyone knows this type of people. They think they know more than you do about how to treat your disease, because:

• They read something about it once
• They saw something about it on TV or online
• They are smarter than you and just know these things that your poor brain cells could never have found on your own
• They know someone who had a similar ailment a long time ago and their treatment must be better.
• They are positive alternative medicine will cure you instantly and you should not waste your time on traditional medicine.

After living with metastatic breast cancer for three years, she has this advice:

"Listen first.  I try to remind myself that she believes what she’s saying, thinks it’s something I’ve never heard before, wants to save my life, and, most importantly, doesn’t know any better. I listen first, at least to a few sentences.

Don’t apologize. I do my best to not say “I’m sorry, but…” If I must be blunt, I simply say that I'm following the advice of medical professionals I trust.

Lead with a fact. I’ve got several at my disposal, and which one I use depends on the conversation. 

Follow with a fact. The other common view I hear is about the value of alternative treatments, both to avoid cancer and to treat it. For breast cancer, people who chose alternative treatments were more than five times as likely to die within five years than those who chose conventional treatment.” If that doesn’t give someone pause, nothing will.

Give a little. I will often talk about my own experience with things like meditation, qi gong, exercise and healthy eating to remind the other person that we don't have to argue in stark opposition.

Be kind, not silent. Say something like, “It’s hard to confront illnesses that could end our lives. I try to be both optimistic and realistic with this disease.”

Change the subject. I try to preemptively control the conversation by asking for specifics about his kids, his retirement, his house—anything other than his health or my own.

Hold up a mirror. As is true in dating, most people would rather talk about themselves."

There is a lot more over at Cure Magazine to read. But I think you get the point. I am about to sit down with a large meal for 14 people and will cross my fingers that I don't get stuck on the topic of my health. I don't allow politics at the dinner table because I would rather talk to people about how they are doing than the latest presidential tweet. Maybe I'll just take another bite of food so I can't reply with my mouth full.

Happy Thanksgiving all!

Life After Breast Cancer Does Suck

Here's the truth. "The Secret Suckiness to Life After Breast Cancer". Go read it. Judith Basya writes the truth. There is no new normal. Cancer lurks for ever. And life on some levels, really does suck after breast cancer. And they never told us about it and we don't get to talk about it.

Judith raises some good points including this one which resonates with me most:

"And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?"

Yes, really? Why don't we talk about post breast cancer suckiness in therapy and not at the dinner table? Our family members are dealing with it all the time so why isn't it acceptable to discuss the latest brain lapse or hormonal therapy induced crabbiness between chicken and broccoli? 

In addition, remember when we were first diagnosed we would get these questions from our friends with that 'look', how are you doing? Now they ask in a lower voice 'how are you doing?' as if it better not be back, is it? 

Seriously? I'm done with that. If you ask me 'how are you doing?' in that coy little lower voice, I'm going to say things like well my knee surgery has complicated things and my back pain is better. I am not going to say the c-word because I am so sick of being asked about it. Believe me if I can get cancer again, you will hear about it. And I won't whisper. Because it should not be a secret.

I thought we got rid of all that cancer secretiveness in the 1990s when those pink people stuck a ribbon on everything. 

But I digress, go read Judith's article and you will begin to understand what life is really like after breast cancer.

Digesting

One of the big reasons I started my blog in 2007 was to allow time to digest news as I received it through my breast cancer diagnosis and treatment. I also didn't want to have to repeat the same news over and over in replies to both phone calls and emails. This blog allowed me time to digest any news before retelling it here. I needed that time to digest my latest news. To this day I still do.

Any medical news I get now, I digest it and maybe discuss it with my husband before retelling it. I need that time. I don't know how anyone else deals with their medical news but this is what I do.

I can give many examples of this but as some of them I am still digesting so I am not ready to discuss. All I know is medical news needs time to digest.

Its Not All Peaches And Roses

Life as an unhealthy person is not all peaches and roses.... Wednesday I wrote about Claire the amazing woman with CF who is full of energy and fun and talks about things we don't want to talk about - like dying. Anyway, she says she wants to wrote a book but not one about a 'happy sick person'. There are a lot of books out there about 'happy sick' people but reading them doesn't necessarily make you feel happy for them.

Honestly who can put a perky spin on being sick? One of the many downsides of life with chronic illnesses is that a little thing becomes a big thing. You have no idea.

Anyway, the world is papered with books about being cheerful, finding yourself, eating better, or walking/riding/hiking thousands of miles or something unimaginable to me.

After my first cancer diagnosis, I picked up your basic paperback fiction romance novel and found out it was about a woman who had some sort of heart defect and how she lived with it. I was not ready to read it and threw it across the room. Eventually a few years later I finished it and like it.

Later, after breast cancer I was older and more adventuresome in my reading. I read and liked 'Crazy Sexy Cancer' by Kris Carr. (I highly recommend that book and website and movie - hint, it's all about attitude). What I did like was the fact that her life was not all peaches and roses when she was diagnosed. She showed us how to cope and accept and develop the cancer attitude for making life good again - I mean what more can you ask for?

I have a bunch of other books that were noteworthy about life with cancer/other terminal/chronic ailment. If you search on the tag 'Books' on my blog, you might find them. I did read a graphic (cartoon) book that was about a woman with breast cancer (and I can't remember that title and I didn't put it in my blog). It ends when she goes to her last PET scan.... You get the idea.... I was very upset after reading that one.

I think somewhere out there is a happy medium of what life is like in the unhealthiness world in which some of us reside. I think Kris Carr is one who comes very close. But there are so many who miss the mark. Getting breast cancer and writing a book how our heroine starts wearing all pink, goes on long walks and ends up doing every Komen walk around the country, and finds God along the way, does nothing to help me feel better.

[I do not mean to offend anyone and their religion. Everyone believes differently. God did not give you your ailment. God is not going to cure your ailment. Talking or praying to God may help you feel better. However, he does not have the magic wand all of us sick people wish for.]

Anyway, we all do what we can to feel better after we find out we are not that healthy. Books about the not so rosy side of life post diagnosis can be very helpful. But the badly written ones, not so much

We Can't Be Mad About Our Cancers (Ailments)

I read someone's blog post or article about someone else who died so mad about her cancer. This is wrong. I can tell you from personal experience. When you have cancer, you do not have the luxury of being 'mad' about your medical crap. Its not worth it.

There are the five stages of acceptance. One of them is anger. We need to get past this as easily as possible. By working on our emotional side as well as our physical we can more quickly get past the anger and then learn what it is like to live with cancer.

When first diagnosed with cancer, I did everything wrong. The biggest thing was I never talked about it, discussed it, figured out its impact on my life. I was mad about it for a long time. Maybe 15 years. That was horrible. I had so many emotional issues because I hadn't dealt with my cancer.

So now I know that my biggest issue with treating physical diseases is also treating the emotional ones. The emotional ones are just as important. But are not treated that way by medical doctors. Medical doctors are focused on our medical care but do not always have the 'bandwidth' to deal with the emotional side. This is where the patients need to turn proactive.

At my first cancer diagnosis, I remember waking up in post op with the doctor sitting on the edge of my bed telling me I had cancer. All I remember thinking is I am glad he told my parents so I didn't have to.

At my second diagnosis, my husband and I met with a medical oncologist, radiation oncologist, surgeon, and social worker in the same day and we all discussed options. Much more emotional support, but not necessarily enough.

But I learned. What I learned is that I need to focus on my emotional side as much as my physical. I can't sit back and wait for care. I need to focus on getting the emotional care I need.

Coping With Breast Cancer with Friends

After living with breast cancer for nearly 10 years, I have some thoughts about how we all cope with it. I know personally I have gone from total, sheer panic to somewhat calm acceptance with a large dose of humor.

Humor has always been my 'go-to' when coping with anything. If I am not cracking jokes, I am really stressed. I mean I sometimes crack really bad jokes when stressed but if I get to the point where I am too stressed, my sense of humor vanishes. That means trouble.

I have noticed that most of my cancer friends do the same thing. We all have kept our sense of humor as we cope with life with breast cancer. We have all coped differently and faced our demons separately but we all have learned to laugh together.

Yes, our demons have been very bad at times. We have lost some friends along the way but our humor keeps us coping.

Living with breast cancer has tested us in many ways and, as each of us are unique, we have bonded together and our bonds allowed is to cope even better. I cannot imagine going through breast cancer without my friends.

Coping

Because I had an awful cold over the holidays , we postponed Christmas. It was yesterday for our family. It meant a ton of cooking, houseguests, and a big  family meal with three generations. It was nice. But I am exhausted. We have enough leftovers for a week. That means I don't have to cook all week. And can nap.  Daily. I am exhausted (did I say that already?)

Friday at the gym I was seated on the stepper next to one of the local 'characters' who reminded me that we need to treasure those family events because not everyone will be there forever and we need to appreciate them why they are here.

Yesterday I enjoyed time with my family. Then this morning I woke to the sad news that a friend who I met through Relay for Life in 2009 (I think) while she was finishing high school and was of the key people involved. After she finished high school,  she went to New York for a while until she started having some digestion problems. She came home and found she had liver cancer. She had multiplesurgeries, months in the hospital, and lost her life this morning at age 25.

A death at that age reminds me of the advice at the gym, appreciate  your times with those you care for.

Why I Don't Blog About Breast Cancer As Much Any More

I have been pondering this one for a long time, years. I used to blog about my breast cancer crap (and if it's cancer, it is crap) all the time. I mean, ALL the time. Because breast cancer was the center of my life. I was going through treatment and coping with diagnosis and all the fun stuff going along with it.

So since I got through treatment and moved on to other ailments, I have not blogged about breast cancer as much. I have thought a lot about this. I have even considered renaming my blog.

After a lot of thought, I have decided the reason I don't blog about breast cancer is that I am trying to bury all thoughts of breast cancer and not think about it. Yes, that's it. I am being a wimp. But its called me coping with breast cancer.

There are five degrees of grief, of us learning to cope with our own mortality - whether it is death of a loved one or our own mortality when faced with life threatening illness. They are: denial, anger, bargaining, depression and acceptance. So my way of coping and acceptance are burying my breast (and thyroid) cancer diagnosis and pretending they aren't there.

This way I allow myself not to think about my cancer diagnoses is by ignoring them. Any potential symptom will be uncovered by my doctors at upcoming visits. Why do I do this? Am I supposed to be hyper-vigilant about any potential cancer symptom for the rest of my life? How could I live that way? I couldn't.

So being a human being, I do what I can to cope. I spend my time pretending I don't have them and assuming that my doctors will discover anything that could be wrong with me. I will fill them in on any aches, pains, and other symptoms that I have but I will not stress myself about it and will pretend they aren't there until I see a doctor.

This is why I don't blog about breast cancer anymore.

Stop Hiding From The Holidays With Ailments

Yesterday I posted a list of a holiday to dos:

1. Be present, don't buy presents
2. Wrap someone in a hug, instead of wrapping gifts
3. Send love, not gifts
4. Donate food, don't shop for it
5. Make memories, not cookies
6. Be the light, instead of hanging lights

Then I started thinking (sorry). I know I am guilty of not being present at holidays. At Thanksgiving, hosted here, I got tired and ended up lying down in our bedroom for long enough that my mother came down to lie down for a minute and talk to me because I was gone so long.

I really have limited abilities and get tired or end up in pain and need to rest. Normally, I would sit down and let everyone else do all the work. But if we are hosting, I never get to sit down because people keep asking for something so I have to get up. Now that I have had a chance to think about it I realize that I am not being present. I am hiding away.

So I have to come up with a plan. First of all I will talk to my husband and siblings because I know I can't do everything. I can also enlist one of my nieces and nephews to help.

I think I have dealt with my health for so long that I have learned to hide away so much that I start hiding away too soon. I need to work on staying out with everyone else and relax and let everyone else do the work and delegate.

That is actually pretty funny because last week I talked to an old friend who was stressing about the holidays. I told her I thought she should delegate part of the work to her husband and let him do it. I ran into her in the grocery store yesterday and she was shopping with her husband and he was doing the work. She had delegated and was very happy to do so. I have to take my own advice.

I (state your name) will stop hiding on the holidays and delegate instead.

Pre and Post Cancer

There is a picture of me around here from back when we were dating. My then boyfriend-now-husband asked me for a framed photo for an occasion birthday/Christmas done by a professional photographer. So I went to a local studio and had a picture done where I look young and healthy. The picture has been some place packed away for a while but now is featured prominently in his office, also know as our second bedroom.

As I walk by that picture these days, more frequently now considering where it is now positioned, I contemplate, me post cancer. In the picture I have long hair with natural blonde highlights. I was a good thirty forty (lets be honest) pounds lighter. I also look happy, healthy, rested, and younger (well it was 12 or 13 years ago).

But what really strikes me in the picture is changes that have ensued. Since then, besides getting married, I have been through a cancer diagnosis and the ensuing roller coaster, gall bladder removal, numerous back procedures, and diagnoses of degenerating disks, fibromyalgia, and rheumatoid arthritis. I have also battled things like depression (and you wonder why?) and anxiety (figure that one out).

At the other end of this ordeal, I am fighting the battle of the bulge in a serious manner. My hair some how lost its ability to get natural blonde highlights when it grew back after chemo. I now keep it short. I used to have long hair because I was too lazy to go to the hairdresser regularly.  I never used to get my nails done, but their importance grew after I lost several in chemo.

The pre and post (second) cancer me are very different. My life has changed in many ways. I am happily married, I do not work (because of my health). And I cope with my physical limitations, which are not all due to cancer.

We made big changes in our lifestyle. We moved further out from the city because I don't work and I needed one floor living. This was a very positive change. In addition, I have focused on learning more crafts - crochet, knitting, and now weaving. I also started my knitting group at a cancer support center, another positive change. I need to focus on more positive changes in my life.

My life is so different than what it was. The good changes are getting married, living in a one floor house, and learning to be more creative. I wish I had not gone through the cancer crap and other medical sh*t.

I do not consider this a new normal (that whole concept is inane to me), which was supposed to be my life one year(!!!) after cancer. This is my life. I can look at the picture of the younger, healthier me, and wish I was still as young and healthy, and that is it.

Thoughts on Coping

I was talking with a friend today. She is having a nudgy little problem that is driving her crazy. She doesn't like nudgy little problems that drive her crazy. She asked me how I do it and cope with everything.

My reply after that, with some deep thought, is:

• Exercise
• Whining
• Prescriptions
• Bitching
• Ice packs
• Complaining
• Chocolate (preferably dark with cashews or pecans)
• Over eating
• Heating pads
• Under eating
• Substance abuse (just kidding)

I admit I haven't had the best week but I'm still here. Monday I was exhausted and in pain. Tuesday I was in pain. Wednesday I was okay but sore after PT. Thursday, its still morning but I feel okay, so far. 

Pain is no fun and its been way too popular this week. One of my many doctor appointments on Monday changed around some of my pain meds. But its still too early to see if that is helping me. So I will refer to my list of options above on how I will cope. But in the meantime, I might need an ice pack and/or a pain pill. 

Its How You Get Up Again

After cancer hits you, you cope and move on. But I think the most important part is how you cope. Many people are familiar with Scott Hamilton, the Olympic medal winning figure skater. But I am not sure that everyone knows about his cancer diagnoses. In addition to testicular cancer in 1989, he has also been diagnoses with brain tumors, several times. And he has also developed that awesome resource ChemoCare which provides a huge amount of information on chemotherapy regimens, including the all time favorite, side effects. His last diagnosis was last spring.

He spoke about this recently with People Magazine, that ever popular medical reference. I found the video very interesting and provided some thought provoking insights. Watch it all the way to the end (its less than 3 minutes), and then think for a bit.

A cancer diagnosis is a big fall in your life. Actually its not a fall, its more like it threw you down three flights of stairs. But you have to regroup and go on with your life.  You still need to go to the grocery store, have surgery, drive your children to school, do the laundry, deal with surgical drains, mop the kitchen floor, dust the living room, make the beds, hang out with friends, and go to more damn doctor appointments that you ever thought possible. And deal with this huge emotional wave of medical crap.

Scott Hamilton has had to deal with this four times now and he came up with this advice.

Its not what happens when you fall its how you handle it. The remember to smile like Kristi Yamaguchi as you do it.