Wednesday, May 21, 2014

Just a few housekeeping things...

1.  I love writing and do better with writing than speaking...but I thought I would try You Tube.  I want to do some product reviews for cancer patients, and I think it is often better to see things than it is to read about them.  So I started a channel.   I may or may not keep up with it, who knows?  But if you are interested, here it is:

There are a few videos but I have one about a product I found that helped me "even out "after a mastectomy so find that one.

There may be videos I embed here but I don't want to turn my blog into mostly reviews. Nothing wrong with it but the way I see it, this is my ongoing story of living with metastatic cancer and while certain things make life easier or are things I want to share with you, I would like this blog to mostly be my writing. (I'm more interesting in writing than in real life!)  But I'm going to try YouTube for a different experience, to learn something new and to have a place to put those things I'm interested in but may not want to blog about.  Many people ask me to share things that I don't think are right for the blog but I can expend it.

Now, I am not EVER going to be a professional YouTuber, and I realize I won't have a zillion subscribers and am not going for that.  I am not beautiful, and am outside of their age demographic, and chemo brain leaves me stuttering, "umm.-ing"and struggling for words.  My lighting won't be perfect, my backgrounds will be my messy home and it is what it is. But maybe I can show you some of my life in video - chemo, tricks of dressing with a mastectomy, helpful products, scarf tying......stuff like that.  The blog is always going to be #1 though.

While I feel healthy, it seems like a new project is the way to go and when my son leaves for college, I am going to really need something to keep my mind on. (I miss him now and he's in the next room!)  Learning how to edit videos is something I'm interested in (but for now, they are one-take unedited versions).   If people like it then maybe I'll do more. and take the time to learn how to be professional about it.

If you do go view it, and enjoy it or find it valuable, please hit the subscribe button and like the video.  I am not quite sure why but every single video I watch says to to that, so sheep that I am, I am going to say it too. I suppose like facebook, it shows how many people you are reaching.

2.  My friend Anastastia, who took the photos at the top of my facebook page of my family and the one of me and my dog, is offering an amazing deal.  She is a well-known artist whose work has been featured in magazines, brochures and art journals as you can see if you look at her page:   

"I am offering 5 photo sessions with 50% discount. Yes, that is right. 50% off. $300 for a $600 package that includes 3 hour photo session, complete privacy, 15 retouched photographs of your choice AND high resolution files. The deal will be over once I sell five photo sessions and then my prices will go back to normal. 
Men, women, couples, all ages, backgrounds and body types.
If you think you have a friend who would benefit from it, please forward them this information.""

If you tell her I sent you and she ran out of the five,  she may give you a different discount, but it won't be 50%. and won't last beyond early June.  So act fast!  It will make a great gift for a woman recovering from cancer and adjusting to her new body.

3.   Finally. my son will be graduating June 4th.  Long term readers will know why that is so important to me - it is literally what I have been staying alive for.  And I will be posting videos and discussing that to come so if you don't like people who brag about their kids, come back in mid-June.  :)  Last night's award ceremony was lovely and he is a Valedictorian, won Science Bowl and Speech and Debate.  The entire crowd cheered when his name was called which warmed my heart at how well liked he is, and one of his teachers was emotional about him - which is the best kind of teacher. I will show you that.  Life with cancer also means my life as a mother.

4.  I have not done a newsletter in a long time but I have one planned.  I want to have a giveaway but am having trouble finding things to give....  :)  Anyway, stay tuned, I"ll try to come up with something interesting.

5.  Lastly, this is for the people who live in Greater Sacramento.  If you need HVAC service, a tune-up or have an issue, call Bonney Plumbing, Heating,and Air, and ask for Chris specifically. He's amazing.

6.  On the other end of the service spectrum, stay far, far away from Paper Wishes.  Terrible service, rude people, money still missing and I was a good customer who spent quite a lot with them and was a "VIP."  Hah!  I don't expect to be ignored when I have a CS question but I always was, and then when they took my money and didn't send me my product-worse.   I am wondering if I should write up the story or not (it's long) but I suspect folks don't care about retail therapy that makes ME need therapy, plus, I keep thinking - hey, I'm alive to get bad service and be upset about it!  There is always an upside and why dwell.

Anyway, those are the little things I wanted to share.  New post coming soon!


Friday, May 16, 2014

This just happened...

A real conversation with a medical professional:

MP:  "Hello, I'm your new Primary Care Nurse Practitioner, and I'll be standing in for Doctor Mogul.  What brings you here?"

Ann:  "I need refills of my Imitrex."

MP:  Looks down at sticky note on chart, "I'm supposed to talk to you about breast cancer. "  *flips through pages on the surprisingly thin chart*   "Um, let me see, breast cancer....breast cancer...oh, okay.  I see that you have Metastatic Breast Cancer.  How are you doing?"

Ann: "I'm doing okay, thanks."

MP: "Oh, okay, so you are stable or what?"

Ann: "Yep, I'm stable. The cancer is stable and has been for 9 months."

At this point, with her using the term stable, I figured she understood the situation.

MP:  "Did you have to do chemotherapy or radiation and how did that go?

Ann:  "Yes to both.  I'm still in treatment; it never ends when you have metastatic breast cancer."

MP:  "Oh, you are? Okay, good.  How are they monitoring you?  Are you having regular mammograms?"

Mammograms?  I am starting to rethink her understanding of my condition.

Ann:  "Well, um no, not mammograms.  I usually have a CT about every three months or so and a full-body PET every six, or when symptoms arise."

MP:  "Oh PET, oh okay, that's good.  You go see a cancer doctor regularly then?"

Ann:  "Yes, I go in for treatment every couple of weeks. Right now I'm just on Perjeta, Herceptin and Zometa."

MP:  "Alright, when was your last PAP?"

Ann:  *shrugs"

MP:  "When was your last visit to the gynecologist?"  She looks concerned. "Do you even have a gynecologist?"

Ann:  "No, I don't think I really need one."

MP:  "Oh, no,  you should have a PAP because it finds cancer cells early. If you want I can do a PAP right now."  She eagerly pats the exam table and looks at me, hope in her eyes.

Ann:  "Um, no thanks, I think they have found enough cancer cells. I mean, I do have metastatic cancer."  I now suspected she may not know what "metastatic" means in relation to breast cancer, and so I added, "You know, end-stage."

MP:  She spoke the words she wrote down out loud,  "Patient refuses PAP."

MP:  "Okay, colorectal health.  You haven't had a colonoscopy?  It's important to get a colonoscopy to find cancer early."

Ann:  "I've already found cancer. I get regular PETs which would find new cancer, I think. I don't need a colonoscopy to find more."

MP:  Clearly thinking I'm clueless, "No, everyone over the age of 50 should have one. It's very important for your long-term health.  A colonoscopy is where they take a lighted tube and check your colon for cancer...."

Long te...? Wait, my God, is she really going to explain what this procedure is to me?

Ann:  "I know what a colonoscopy is."

MP:  "Oh oh, okay you do. Good, good, then you know how important it is that you get one."  She sits, lab slip in hand, ready to write the order.

Ann:  "Let me ask you a question: If a person has metastatic breast cancer, is already undergoing cancer treatment and has been for the past five years, has regular PETs and CTs to monitor whether cancer has spread anywhere else in her body - why does she need a colonoscopy?  I already have end-stage cancer which I'm going to die from, so what would be the point of doing an invasive procedure like that to find more, and why do you think a PET isn't good enough?"

Like Hillary talking about Benghazi, I really wanted to know: "What difference, at this point, does it make?"

MP:  "Oh...oh...oh, I see.  Well, I'm sorry if I upset you or brought up negative thoughts."

Ann:  "..Sigh..."

Yes, my being upset is the problem here, not the fact that you are an early detection drone to the exclusion of all common sense.

You know what questions she didn't ask? Where my cancer spread.  She never asked me what chemos I'd been on.  She didn't even say, "Tell me the course of your breast cancer and what treatments you've done."  I'd have been happy to answer those questions and it might have made a difference in the discussion.

An accurate history seems important, even before common medical tests. Maybe if I had one small bone met that had been stable for a few years and was being treated by a hormonal drug, and didn't have all the PETs and scans and monitoring that I do, then some of these early detection screening tests such as a PAP wouldn't seem so off-kilter. But for me, with cancer in my liver and my abdomen inspected cell by cell on a regular basis, and, let's face it, having a pretty short lifespan, screening tests for new, early stage cancers seem completely unnecessary.

I might have pre-cancerous cells in my cervix?  So freaking what?

I expect my primary care doctor's office to either know these tests aren't necessary for me, or tell me why I'm wrong.  Why, when the house is burning down, is it important to turn the light off when you leave?

"Ask about breast cancer" on a sticky note is how the doctor guided her and that lady needed a lot more guiding than a single sticky note can provide.  She was so focused on the early detection line of thinking  that she was unable to change mental course when that was no longer a reasonable possibility.  She didn't ask the right questions, she spoke like I was ignorant, she didn't hear what I was telling her and at the end, she assumed I was upset by thoughts of my disease rather than the truth - her lack of insight.

Unfortunately, as more people need healthcare, more nurse practitioners are standing in for doctors, and talented as many may be,  they do not have the training or education that a doctor has.  Primary Care will soon be exactly like calling first line tech support, where you have to go through that required checklist no matter what you say the problem is.

"Hello tech support, I'm calling because my printer is smoking."

"First unplug the router, turn off your computer, plug in the router, turn your computer on...."

Based on the advice of this NP, a person less vested in the understanding of their own disease than I am and who is used to doing what medical people tell them would today be spread-eagle in the stirrups of an OB-GYN's office or worse,  butt-up, anesthetized, on the table of a GI doc.

Welcome to the future of medicine.

Turn the lights out before you leave.

Wednesday, May 14, 2014

Dear Abby

It's an old story, but one that people my age around the US share: starting your day by reading newspaper advice columnists.

I've been reading them since I was a kid. Not only Dear Abby, but Ann Landers (when she was alive), Hints from Heloise and Miss Manners. Nobody can top Caroline Hax, with her spot on advice and touch of snark. I find these advice columns fascinating, and I have learned a lot about etiquette reading them, including that everybody does everything wrong.

Including myself.

So yesterday as I sat down to coffee and the paper, as I have every day of my life, I turned to Dear Abby.

"Dear Abby,

I have been married for 18 years to a wonderful woman who was diagnosed with stage 4 cancer a few years ago. We don't know how much time she has left, but she feels the cancer has robbed her of her "retirement." She is trying to persuade our family to move to Florida so she can enjoy some warm weather.

Abby, for many reasons I do not want to move. We have lived in the Midwest all our lives. My elderly parent would be all alone if we move, and I still have a sibling who is also terminally ill.

I have had the same job for 25 years, and I don't want to give it up because I have the freedom to do much of my work from home, which allows me to help my wife and have income as well. If we move, there would be no guarantee that I could find a similar work situation that is so beneficial.

My wife says I'm being selfish because I'm unwilling to leave my job, family and friends to do as she wants. I understand her desire to live in a warmer climate, but I think she's the one who is being selfish.  What do you think?

---Wants to Stay Put

Well, who is in a better position to answer this question than I am?


Honey, can you do me a favor and call your wife over and ask her to read my answer?  Bring her a fresh cup of coffee while you are at it.  Thanks. Have a good day.

Dear Stage IV in the Midwest:

I understand.  I know your deep disappointment at having been cheated out of something you'd long imagined and felt was a birthright. I, too, had plans for my golden years. A hundred times, I've taken my grandchildren on imaginary walks through the zoo, flowers blooming, monkeys chattering, treating them to forbidden ice cream and telling silly stories about their parents.  I had planned to retire somewhere warm with my husband: we were thinking Arizona.  I had hoped to have the freedom to travel, see Europe maybe, spend my golden years by a pool and condo maintained by somebody else. 

But as you know by now, these dreams are just vapors. They are best case scenarios, things we hope for.  We are all smacked by reality in big and small ways, and sometimes, our plans fall by the wayside. Somebody gets sick, somebody loses a job, a house burns down, somebody has an affair, somebody gets Alzheimer's.  Life doesn't work out exactly the way we planned.  We know this - we read tragedies in the papers, see horror stories on the news, hear about the troubles of friends and relatives and strangers every day.  We think, protectively, "That won't happen to us. We'll retire in Florida in a house with a pool and a tile floor and the kids will come vacation with us." But sometimes? Bad things happen to us.

I am alarmed by the fact that you have had Stage IV cancer for several years now and have still not adjusted to your new reality. The retirement that you feel robbed of was never reality nor was it guaranteed.  You can't be cheated out of a dream.  You can't be robbed of what you never had.  But I know it feels that way.  And, you are mad and angry and upset.  

And then you supposed to adjust to reality, because you are a grown-up.

What is reality is your husband's need to support you financially and be in a position to take care of you when the time comes.  Sure, in the movies everybody has money to do their dream bucket list thing when faced with a terminal illness, but this is not the movies. While you must still be feeling well since you are dreaming of Florida, trust me, the time will come when it doesn't matter where you are. If you haven't been sick enough to realize that yet, you are doing well.  Beds, sleep and pain are the same everywhere.  

What will matter is that your husband has his support system. More than you need warmth, he needs his job, his friends, his family around as his world crumbles. Why?  Because he'll have to take care of you. I know it feels like you are the only one suffering, but remember, you are not the only one whose dreams are dying - his dreams are dying too.  He also dreamed of being with you in Florida, playing a little golf and coming home to tell you about it, having a beer by the pool with his wife. That will no longer happen for him either, so he needs to hang on to what he has.  His brother is going to die, his parent is elderly and needs support, and his wife is going to die. The burden must be immense. Can you in good conscience have him quit the job that has given him 25 years of stability and something normal to do, and move him halfway across the country to where he knows nobody, has no support and then.....leave him alone?

I couldn't.

It's time to stop feeling robbed of what you never had,  and start appreciating what you do have.  You have a loving husband who has a good and flexible job, a person who will stick by your side when you need it the most. You are very lucky. Hey, I hate the cold too but even Florida can be cold when you are all alone. Be happy that you have a man who will see you through the dark days to come, who will care for you.  Look around at your friends, your family, the life you have created for the past 25 years in the Midwest, and appreciate and enjoy it while you still can.

Now honey, can you hand the paper back to your husband?  I want to talk to him a second. Thanks, and I hope you feel well enough to dream of Florida for many more years.


I'm happy that your wife feels well enough to want to go someplace, that is a good sign.  Trust me, the day will come when she won't care about the weather and leaving her house will be difficult. I think a few vacation days are in order here.  Start planning on trips to Florida during the harshest part of the winter months.  Maybe take one now, go someplace glamorous -  Fiji or Hawaii might be nice if you can swing it and her health can handle it.  A company that has employed you for 25 years likes you, they may let you take extra vacation or you may have some built up.  Tap into that retirement fund that your wife probably contributed to and take some leave. Get your wife some warmth during the winter and something tropical as often as you can manage it.  You will be making her happy and creating memories that will last you a lifetime.  She doesn't deserve for you to give up your entire life but she does deserve some warmth and fun while she can still experience it.



What do you all think - do you agree?  Who is selfish there?


A side note:  I am thinking of having fun with my YouTube channel and doing some reviews of products for cancer patients. I have gotten requests by companies to review products but I am not in the review writing business unless it's something I really am into (meaning, I find it hard to do and don't want to turn this blog into a spam factory).  But YouTube is something else and I'm ashamed it took me so long to think of it.   What do you think?  Shall I do it?  Do you have a product you want me to review?  Something that helped you in the early days of cancer, or in the later days?

I just did a YouTube video on a scrapbook warehouse box I got (it's silly) and am thinking of doing more.  My video is here:  I don't want to embed it but if you want me to do more, like and subscribe to that channel and let me know here or on facebook, and I'll come up with something.  I am not going to do scrapbooking ones but I do love these warehouse boxes so if I get the Pink Paislee box I'll definitely do another scrapping one!