Coming Back to Life

We are slowly coming back to life. We are all still very sad about my father's death. But his service is finally this weekend. 

At the last minute he decided to donate his body to benefit others. However due to his age, 89, and his cause of death, cancer (love those circulating cancer cells), options were limited. He donated his body to Harvard Medical School for research. They will keep his body for up to two years, but more like 12-18 months and then return his ashes to us. 

In the meantime we are having a celebration of life type service at a local Unitarian church this weekend. The service should provide some sense of closure for all of us and help us start to put our grief behind us. 

However, in the process of putting together the service, all of our emotions are riding high and we are stressed. There are a lot of opinions and thoughts that create some conflict. But I think we will be able to pull this together and start the process of healing. 

One of the reasons I did not discuss my father's health before his death is it was not my story to tell. It was his story. I may have alluded to caring for someone and taking someone to doctor appointments but for the most part I kept it to myself.

I am trying to take care of myself as much as possible. My knee continues to heal. My exhaustion continues to thrive. And when I miss my daily nap, I tend to get cranky and go to bed early. 

Pancreatic Cancer Sucks

I haven't been blogging recently because I have been emotionally stressed. It may take me a while longer to get back to it. My father, who was diagnosed with pancreatic cancer last May, had metastases by August 1, and was in chemo until Feb 13, died on Tuesday February 27.

Since his diagnosis with Waldenstrom's lymphoma back in 2013, I had become his oncology interpreter/assistant. I went to the important appointments and answered his questions that the doctor's don't want to answer.

Due to vein damage from chemo for his lymphoma he needed a port. When he did finally get a port, his first question was 'when do I get it out?' The doctors and nurses would not answer that question. So I told him 'once you don't need it for six months or so, you can discuss taking it out.'

I also translated back to his oncologist when asked about pain levels and he replied 'just a little over here'. I would tell the oncologist that he has had several instances of extreme pain. Once he told my sister that that the pain that caused tears in his eyes was only a 5. Later he corrected himself to say it was a '10'.

Another big step in his cancer treatment was weaning him off Wikipedia for cancer research. I had to explain to him several times that Wikipedia is not a good place to do research and that the American Cancer Society was the place to start. This took several months of 'discussion'.

Aside from losing my father, the sad part is that my medical history is what enabled me to be his oncology interpreter/assistant. For the last 8 years of his life, anytime he was going to have a new procedure, test, or other medical misadventure, he would call me up and want to know if I had had it and what was it like.

Until his pancreatic cancer metastasized, he would introduce me to his doctors as "his daughter with more ailments than him." We would both make jokes through his appointments to the point that the schedulers sometimes hinted that we might be a bit crazy. Humor got us through a lot of this but now his sense of humor is gone with him.

We will miss him and we will be very sad for a while. But it was nice I could help him decipher his diagnosis and appointments as much as I could.

End Of Life Stuff

No I am not dying. But in the middle of the night I couldn't sleep and my mind wandered off to the best and funniest obituaries that you see shared around the internet. (I have no idea why my mind wandered that direction.) But I was snickering about some of the funniest ones I remember parts of.

But it made me think. I want to write my own obituary. And it will have to be a funny one. Because I want people to laugh about me or at me after I'm gone. And not mourn me sadly. But that should be in a couple of decades (I hope).

So here are some thoughts on what I will include:

• She was so uncoordinated she could walk into a wall if she wasn't looking.
• She spent many years abusing her body through ice skating, skiing, hiking, walking, and more to get her body into the sad shape it was later in her life.
• Though she went through cancer twice, she made an effort to enjoy everything she did
• Her overwhelming addiction to bacon was prevalent.... But she enjoyed cooking and would never follow a recipe.
• A early in life bookworm she managed to kill many houseplants but did love gardening
• She leaves behind her ever 'eye rolling' husband of X years, who put up with her cat fixation and tolerated her cooking.

I could go on with this list but it still needs finesse. I will keep working on it.

My grandmother, for the last 15-20 years of her life, had an 'In Case of Death' envelope. Whenever anything was remembered that would be useful after she was gone was scribbled on a piece of paper and filed in the same 9" x 12" envelope. After she died, we found many duplicates, some mysteries that may never be unraveled, and lots of last wishes. 

Maybe its my age, maybe its my 'oh so fun' medical history that prodded my mind in that direction, but I might need to get organized a bit more in this area.

A Rerun: Helping People With Cancer

I know this is a popular subject with people with cancer - how and how not to help them. Some people are idiots. I can tell you story after story about ones I have met along the way.

• You aren't going to get cancer by mentioning the word 'cancer'. Seriously? Its an ugly word but its not an obscenity that will cause someone to pass out. You can't ignore the elephant in the room. Ask how their treatment is going, how they are feeling (but not that vague, polite 'how are you today?' bullshit). 
• Never tell them about your cousin's neighbor's dog walker's hair dresser's sister's cancer treatment. You are not a doctor. It probably wasn't the same type of cancer, and even if it was, everyone's cancer is different. You do not want someone to start wondering about their treatment plan - or to think about how stupid you just sounded.
• No, they probably are not about to die so don't ask them 'how long do they have?'. I find that one pretty damn rude if you ask me. And people have asked me that. I probably gave them some gaping look and meant to say 'about another 50 years'.
• Don't be shy. You aren't to get cancer by being in the same room with them, shopping for them, eating a meal together. If you want to help them, you need to go see them and talk to them. Call first and ask 'I'm going to the grocery store, can I get anything for you?' or 'can I drive your kids to school for you tomorrow or take you to a doctor appointment?' 'Can I bring you a casserole for your family to eat later this week?' If you say, how can I help, they may not be sure what to say. You can do their laundry, clean their house, mow their lawn. 
• Be smart. Someone in cancer treatment probably has limited energy so going to the late movie, a museum where you are on your feet or a shopping spree at the mall are probably not going to work. Nor are going out for drinks or bar hopping. Or a 40 mile bike ride. Or surfing. Or mountain climbing.... I can go on. Ask them do they want to get out and do something and let them tell you what they would like to do. 
• Be respectful of them and their time. They may or may not be feeling very well. If you are visiting them and they appear to be either trying to stay awake or not run to the bathroom, it's time for you to leave. When you arrive, ask them if they are up for a visit or just drop off what you brought and leave. I know I would try to be polite with visitors and sometimes I really just needed to sleep and not throw up.
• Do not visit anyone who is an inpatient in a hospital unless they tell you they can. People in hospitals are usually pretty sick, have not gotten enough sleep (because you can never sleep in a hospital), and look like crap because they are in bed, or are bored to tears. Boredom welcomes visitors; pain, lack of sleep, and looking/feeling like crap hate visitors. Call first and ask what you can bring. Do not just show up at a patient's room EVER!

I think that covers most of my irritations. Yes I have cancer. No I am not going to die anytime soon. I would love it if someone would weed my garden (my husband has a problem telling weeds and plants apart). I like visitors who call first. If I get tired, I will kick you out. Thanks for asking.

Emotional Stress

About a year ago, I met a young woman who had had cancer since age 18 when she was diagnosed with an inherited pancreatic cancer. She had never thought she would make it to 40. But last year she did make it to 39 so she had lots of hope. Until last fall when everything changed.

In the fall, she found out nothing more could be done and she would be on hospice until the end. She got hospice at home and slowly began to decline. All of us who knew her were on pins and needles waiting and hoping. We got periodic updates on how she was doing. She was losing weight, she was not eating much, she wasn't getting out of bed much.

Then we would talk to her and she would tell us about how she is doing. She sounded fine. She admitted to being thinner and not eating much. We would hear she couldn't really get out of bed much anymore.

We realized that (a) she has been on hospice for six months, and (b) she should be close to her 40th birthday - something she never thought she would attain. Who ever thought someone would be on hospice for six months? Most people I know who go on hospice, last a few days or maybe a couple of weeks. Not six months!

In the meantime, we are all very happy she is still with us. We want to confirm the exact date of her birthday so we can make sure we celebrate it. But seriously, we are on pins and needles. We knew her too well. We knew about her cancer struggles and her family issues. She doesn't live close enough to any of us so we can just drop by. Phone contact is iffy because we don't want to wake her and she can't talk if her caretakers are there - which we never know.

How are we going to feel when the end happens? We like her and want the best for her. But this long decline is getting harder and harder to deal with. We talk about her and we care. Because we care, the emotional stress is building, the longer this she lasts.

With cancer, you have to deal with your own emotional stress. And you make new cancer friends once you are armed with your diagnosis and you share your roller coasters together. You share your emotions.

As time passes when I know I have a friend who is waiting for the end. She isn't fighting a battle or being a warrior. She is a young woman facing a terminal diagnosis which is nearing as each day passes. And as I am a friend, I am sharing it with her. And sharing her emotions too.

I Love Social Media

I am active in social media. Believe me, I blog, I'm on Facebook, my blog is posted in a bunch of different places. I am Google+, I can't list all the places I can be found online because there are so many. I get feedback and comments from lots of places too. I get comments from friends and also from people offering all kind of  'miracle' cures provided I send in a few (hundred/thousand/million) dollars to help. And every so often, I hear from some very 'odd' (odd, in the weirdest sense of the word) people.

So yesterday I wasn't very surprised to get a comment back on "Call Me Ms. Grumpy". It read:

"stop being so self centered and focus on something,somebody beyond yourself-yeah i get it,your dying,but we are all dying,your just dying faster--go to a battle field cemmaetary and see all the young people who died very early--your nothing special"

For a nanosecond, I thought to myself 'what an ass'. But then I did think that in the grand scheme of things me being self centered is the least of my worries but it is true that I can be a tad focused on me. And its my blog so I can say what I want (because its supposed to be about me anyway).

However, I do get the point. There are so many people who are dying senselessly in needless wars who we should be concerned about.  

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.

Pain and Suffering

Yesterday was not a good day. Some how I did too much (who me) and ran out of steam by the end of the day. And I got some bad news.

First off, even though its been over a week since I fell, I am still not right. I run out of steam too soon and end up feeling a bit 'off' each day. I did ask Dr Google about concussion recovery and found out it usually takes a week or more to fully recover and if you are older or have health issues, it can take longer. Drat.

I want that magic wand to make me better as always.

Second, I called a friend yesterday to see how she was doing. Her husband was diagnosed with stage IV colon cancer nearly seven years ago. He went into hospice just over a week ago. I have such poor timing. I called to see how she was doing and her daughter and step daughters. Then I found out he had died the night before. I felt like a heel. I had no idea.

I will send a card and go to the  wake and funeral. I feel awful I called and didn't know.

I am also sad. They were together a long time and married for ten years. Now my friend is a widow. She had retired early this year so they could spend time together.

Cancer sucks.

I'm Losing My Friends

Right now I have two friends in hospice care. One I have known for only about six months but we have gotten pretty close. She was in my knitting group and when I met her she was on palliative care only for pancreatic and other cancers that she has been treated for over 20 years. She is on hospice care at home and no longer goes to knitting. We have talked on the phone and skyped regularly over the past four weeks but it is unclear how much longer this will go on.

The other friend is the husband of a very old friend (friends for more than 40 years) and has been treated for stage IV colon cancer for nearly seven years. His disease has now progressed so that he is fairly 'out of it' and is in hospice care. I hope to get to see them both this weekend but am not sure due to my health. If you are incoherent and in hospice care, how long can you last?

It is hard enough to deal with one friend in hospice without having a second one to cope with as well. I am close to them both and will go to both their funerals.

Cancer sucks.

In Shock

We moved to our new neighborhood last January. January in New England is not a time when people are outside much (unless they are playing in the snow somewhere). People are not outside in their yards and being social. All socializing is inside.

We met one family of neighbors a few weeks afterwards because we were outside dealing with snow and ice. We then met more neighbors as the weather got warmer. Because of the street's turns, we have one neighbor directly across the street and one next door. Everyone else is around a corner someplace. I met the neighbor across the street, B, in April or so. We talked gardening. She works at a local school and was very nice. I met her son and grandson. She was planning on working a few more years and then retiring to enjoy her gardens.

We discussed gardening issues over the spring and early summer. She was looking forward to a trip to her home country with some family members in the summer. Then we went away for a few weeks and she was away for a few weeks. I hadn't talked to her since July or so. I just figured she was busy and I was busy.

Last week I noticed lots of cars visiting her. Her family would come over from time to time, mostly on weekends. But there were never that many cars for that many days. It was very out of place. Friday it looked like a big garden party was going on. One of the other neighbors told me that the mailman, delivering a package, told her that there was lots of crying and hugging going on.

Saturday we went to the beach for the day. Sunday one of my other neighbors asked if I knew what was going on because on Saturday she saw a hearse and a procession leaving the house. (She couldn't stop because her child had a medical emergency she was dealing with.) No one knew what was going on.

I thought about stopping by on Sunday to make sure all was okay. All the neighbors were concerned. No one knew anything. I was asked by several people.

Yesterday after the gym, I saw people sitting in the garden. I went over to ask. It turned out that was two of her children. B had felt sick on Tuesday and went to the hospital. She died Wednesday morning in the hospital. She was gone. Everyone is stunned.

It turns out B developed a horribly aggressive, very rare form of lymphoma and that was it. Nothing could be done. Its just horrible. I can picture her in my mind but I will never see her again.

Too Much Pink!

Here is an example of what too much pink has done so much wrong: What is the biggest killer of women? If you said breast cancer, you are wrong. Breast cancer kills one in thirty women. But heart disease kills one in seven. Yes you read that correctly.

So much money and focus has been put on the stupid little pink ribbons that there is now a misconception in the public that have hidden heart disease as the number one killer. As a result, more focus is being put on a mammogram is a life saver instead of a thinner waist.

Obesity can contribute to worse outcomes in breast cancer but it definitely contributes to heart disease. Healthy and active life styles not just help improve outcomes in for breast cancer and even more for heart disease.

Personally, I think we should get rid of 99% of all the pink crap and move the focus to heart disease which is killing far more of us. (But still go for our mammograms.)

I miss my friends

The other day I learned that another one of my online cancer friends passed away. I had never met her in person but we knew each other for probably close to 8 years on line. She lost most of one leg from cancer and instead of bothering to tell people the medical reason, she would just say 'shark'. As it was much more interesting.

She also became a stand up comedienne and performed at clubs in the Chicago area where she lived. She was very supportive to me when dealing with ups and downs of cancer and was quick to provide supportive words when I needed them.

She has now joined the ever lengthening list of friends who are no longer with us because of cancer. I miss them all, from the first friend who died from cancer, Andy, back in ~1983 to Lorri, just a few days ago.

You can coat cancer in a pretty color and wear boas, hats, shirts, and carry colored bags, and light up buildings. But its no pretty, its not a war, it sucks.

What would you do?

This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:

"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"

My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?

Personally I find  the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.

A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.

Lessons in dying

I started this post shortly after Elizabeth Edward's passing in December 2010. I keep going back to this post periodically and added and deleting thoughts. Each time I am usually prompted by another friend's advancing health issues.

Elizabeth Edward's death provided us new lessons in death, cancer, dignity and cancer treatment. She was educating to the end when she announced that her treatment would no longer be productive. She joins a list of famous women who have helped make cancer more understandable and less fearsome.

Real people get cancer as do famous people. But often we don't understand what they are going through unless we have been there ourselves. But even then, its can be difficult to understand as the treatments vary as do reactions to them. Some people tolerate them better than others. Not all lose their hair. Some find they react to the treatments in bad ways. I have friends who could not complete treatment because they were allergic to chemotherapy drugs or could not tolerate them for other reasons.

I have numerous friends who have succumbed to cancer since I started writing this post. Last weekend I got together with a breast cancer friend and she said that all her friends with cancer were gone, including the too young ones. There are feelings of guilt when our friends are gone. Why them when, before cancer, they had so much life left for them?

But as each of friends go, we learn from how they lived their life and die. We may not agree with them - why didn't you get your affairs in order earlier? We may admire them for what they accomplished. But we always still miss them.

Withheld information

A few times in my life, I have had people say me 'we didn't want to tell you but so-and-so was diagnosed with cancer, we thought it might upset you'. I hate this. It goes back to my request not to treat me any different because of my health. Unless you want to shower me with money.

I am capable of handling news about other people diagnosed with cancer. I live in cancerland where everyone has cancer. Its not a nice thing to hear about someone getting cancer but believe me I can handle it. The only time it would upset me seriously would be if it was me again. And it really pisses me off when information is withheld.

Just a little rant today. Its been on my mind recently.

Separately I just learned yesterday that an old friend from childhood who lived across the street was diagnosed with breast cancer and died 8 weeks later. Her cancer was hidden behind a benign breast condition so it was not diagnosed until too late. This makes me sad that this could happen in this day and age of modern medicine. She was 54.

Debating the right to die at home

I am sure you have heard of the story of Brittany Maynard who died  with help from a prescription at home after a horrible cancer diagnosis. The real story includes he fact that she had to move from California to Oregon to do this.

Now there is another woman who is suing California for the right to die at home, and not have to move out of state to do so.

I strongly believe in the right to die at home, on my own schedule. I do not want to die full of tubes in some uncomfortable, impersonal hospital bed. When I get to the bitter end, I want to be home with a few selected people. 

If I get a diagnosis like Mrs. Maynard did, I would definitely want to be able to choose when I die and have the option to make that decision.

But I can understand why others do not share the same beliefs.  There are religions who believe in the sanctity of human life. There are others who would not want to because they want their doctors to keep trying to save them.

All I want is the right to make the decision by myself. If my health took a horrible turn from which there is no treatment, I would want to be able to consult with a doctor and a psychiatrist to make the decision and get the prescription to make the decision on when. I would not want to have to file a lawsuit to be able to do so.

It should be a matter of choice, not a legal issue.

What would you do?

Here's the scenario. You had cancer once and chemotherapy almost killed you so you swore you would never do it again. You get a new cancer or a recurrence and the oncologist recommends more chemotherapy. Would you do it?

This is the case of a friend of a friend. Apparently the first rounds of chemo nearly killed her by causing life threatening diarrhea for weeks. Her doctors told her a week or so ago, its back and want her to restart chemotherapy. She said no.

My friend told me this story as she is trying to find her so she can talk to her. I can completely understand the situation.

My first inclination would probably be to refuse more chemo if I had nearly died the first time. It might take a lot of convincing to get me to try it again. I would want to know what would the doctors be able to do to help prevent of the situation. I mean would I rather die from diarrhea or from cancer? I'm being real here.

Us cancer people may make what others consider weird decisions and discussions. We have already faced a potentially deadly diagnosis. Sometimes the treatment is pretty nasty. I mean its the slash, poison and burn - surgery, chemo, and radiation. Its no fun. You feel like crap. You lose your hair. You deal with radiation burns on sensitive body parts.You may be alive during treatment but you certainly aren't living.

I know I would have second thoughts and look for options that wouldn't be as harsh. What would you do?

Right to choose

Would you move to Oregon if necessary? I would.

I hope that you do not disagree with this woman's choices but I completely support her. She has a very unfortunate medical diagnosis at age 29 and has taken steps to live her life as best she can. She has gotten the medication she needs to die with dignity as she wants. She isn't rushing to use it but is much more relaxed knowing that when the time comes, she will be able to choose.


I am a firm believer in DNR's and palliative care. But sometimes I think it doesn't go far enough. First of all with a DNR, someone else is making the decision on your body that it is time to stop treating you. Second of all, what if the DNR happened after months of agony? Instead of at the beginning of all the agony. Palliative care is wonderful but it can only do so much. What if your body develops a resistance to all the pain medications? Where would that leave you?

I would move to Oregon in a heartbeat if necessary.

Its a sad day

Robin Williams died from an apparent suicide yesterday. But I smiled after reading some of his most famous quotes. Here are some of my  favorites:

"Goooooooood morning Vietnam! It's 0600 hours. What does the 'O' stand for? O my God, it's early!" - Adrian Cronauer, Good Morning Vietnam (1987)

[Mork picks up an egg] "Hello? Hello? Anybody in there? Little hatchling brothers, you must revolt against your oppressors. You have nothing to lose but your shells."

"You're only given one little spark of madness. You mustn't lose it."

You can read the rest here.

But the sad thing is that he committed suicide after dealing with depression. I too have depression issues as do millions of other Americans. But no one wants to talk about it. Its one of those diseases, like hemorrhoids, which are embarrassing. The problem with embarrassing ailments is people don't want to talk about them. So they do not communicate them to anyone, even a doctor, which can endanger their health.

My depression got worse with my second cancer diagnosis but I probably had it for years before. But damn it, cancer is depressing. And coping with it, for a second time, isn't easy. Treatment was the answer.

I don't know more about Robin Williams' depression story and only know what I hear on the news. His humor always had a bit of an edge. But he did make us all laugh as we listened to him. It is very sad that he is now gone.

"Crying on the inside, laughing on the outside."