Goodbye, Kathy….

My cousin’s Life Celebration event is happening next Saturday (3-29-2104).  She died from neuroendocrine colon cancer on March 2, 2014, after a horrendous eight plus month battle.  She fought hard.  She had so many complications from the cancer, as well as the expected miseries of chemotherapy (which nobody really anticipates, because any prior frame of reference is just far too inadequate).  She wasn’t able to catch a break during that whole time, from a month or so before she was diagnosed until she died.   But her support system was amazing !  Her mom and brothers (and their entire families) were there as much as possible. I am still in awe of her co-workers and friends who never stopped caring, or offering some type of transportation, meals, or other ‘actions’ of support.  I was so thankful she had that. I wish I could have done more.  I wish I could be at the Life Celebration to meet so many of her close friends and co-workers.  My own medical issues prevent me from doing an all-day-away-from-home thing with the equipment I have to have.  So, I’ll have to be there in spirit only.  SO, I write, and hope that I don’t dishonor my amazing ‘editor-of-textbooks’ cousin with inconsistent verb tenses and other grammatical horrors 🙂   Emotions and tears are messing up my self-editing a bit.

When I moved back to my hometown in very late 2002, we reconnected at the legendary family Swedish Christmas Eve party.  That was the beginning of us becoming good friends, as well as cousins.   We e-mailed and talked on the phone periodically, and it was always as if we’d just been in contact the day before.  We reminisced about past Christmases and various relatives, and laughed a lot. She was always so supportive about the myriad of medical issues I’ve gone through, eventually ending up disabled.  As an RN,   I was able to help out when there were things going on medically  with family members (including Max, her cat), as well as herself.  I’d try and explain the crazy confusing medical things.  And then came May 2013.

She called me before her trip to San Francisco, telling me of some troubling symptoms, and asked me what I thought, as she’d seen one doctor who just wasn’t giving her the idea he really heard her.   I had my usual “piss on him” reply, since doctors work for the patient, and if it’s not a good fit, the doc is the one who needs to get the boot.  I suggested she ask her primary doc for a referral before the San Fran trip to get an appointment scheduled, which she told me she planned to do.  My memory of what happened when is blurry from that point on, since Kathy began having intense pain, with frightening changes in symptoms not that long after her first appointment with the new doctor.

When she finally got the diagnosis, I suggested she send her first full colostomy bag to the jerk doctor that blew her off.  Then, I started looking things up on the internet about neuroendocrine tumors.  I’ve worked in many different areas as an RN, but not specifically on any oncology floors (where the chemo and cancer-specific care takes place).   I can take care of post-op (surgical) cancer patients in my sleep… but when I saw the information online, I just cried.  I had to reboot myself, so I could be more useful.  The statistics were grim, but very few things in medicine are absolute, and with her otherwise good health and age, I really hoped she’d be able to beat this.  She was offered some treatment options.  Kathy never had any other intentions.  LIVING was the only option she considered.  We never discussed anything about her dying, aside from a few statements and questions at the very end.

Something really important began to happen over and over again during her battle.  Whenever she felt something wasn’t quite right, or the explanations given by the doctor just didn’t seem to fit, she’d call me.  That wasn’t what I noticed nearly as much as how incredibly well she knew her own body, when she was having to get used to SO many ‘new normals’.  She just knew when things weren’t right.  AND, she did something about them.  She didn’t wait for something to completely fall apart before finding out what could be done to fix it, or at least figure it out. If what the doctors were saying just didn’t feel like what she was experiencing, she found one of them who could explain what was going on in terms that made sense. Doctors can be so good at blowing through explanations that sound like Greek dipped in Latin, leaving patients more confused or just unsure; add chemo-fog to that, and it gets even worse.  More people need to follow her  example- keep asking until you know.  I told her that I was going to blog about that at some point, and she was fine with it.  I also promised not to throw her identity out into the universe in the blog (as well as not name too many others’  names). Thankfully, she was given a name that still allows me to recognize her, while honoring her wish for anonymity.  Those who know her will know that this is about her.  And her amazing fight.  And ongoing strength in the midst of hellish situations.

I was SO glad to finally see Kathy last Christmas, at the family Swedish Christmas Eve party.  I’d seen photos of her, looking quite well for someone going through so much.  But I had to SEE her for myself.  We took a bunch of photos (most of which have people looking off in various directions at a LOT of different cameras 😀  I’m so glad we all have those photos… ).    We talked.  And she was hurting.  It was  new pain, which worried me.   When she got home, she had it checked out, and that pretty much started the beginning of the end, as I saw it.

In early January, I noticed she wasn’t replying to e-mails, which was not like her at all (I have hundreds of e-mails between us during her cancer battle), or writing much on CaringBridge herself.  She called a few times, telling me what was going on, and what else she had to have done TO her.  And then, she was told there was nothing left to do.  I was in contact with her mom and brother during this time as well.  I knew things weren’t good before she was ready to tell me herself.  I never wanted her to think I’d given up, or to bring something up that she wasn’t ready to talk about .  She never wanted to know that living and surviving weren’t an option… but at some point, it has to be acknowledged and dealt with.  It’s not something that is ‘wanted’ information… but it is necessary for the best possible care to  be made available.  I’m thankful that she had someone looking out for those painfully hard things.

That started the last of our phone calls.  During the earlier ones after treatment stopped, she said she didn’t feel like she was dying.    She wanted to find some alternative options, and why not?  She was still in ‘fight mode’.  She told me that if she just wasn’t so tired, she thought she could do some work from home like she’d planned.  In the next few weeks, she sounded more and more tired. And then we had  the heartbreaking phone call when she asked me what she had done wrong that she wasn’t going to be able to live.  I told her that she had gotten a really mean, cruel cancer, and nothing she had or hadn’t done caused it. Then, in an almost childlike tone  the last time we spoke, she very gently asked me why I’d been able to survive the cancer I had.  There was no bitterness in her voice, but what sounded like a painfully desperate attempt to understand the incomprehensible. She knew she could ask me anything.   I told her I’d just been very lucky, and agreed when she said she felt like she’d been dealt a really harsh hand.  And we both said “I love you.”.

Shortly after that phone call, I talked to her mom and found out that hospice was  in the picture.   Her brother and sister-in-law called me the night she slipped away.  I knew from the caller ID who it was, and what they were going to say.  I think I just bawled and sounded like an idiot. I knew it was coming, and it still hurt like hell.  I can’t imagine what this has been like for those who have been right there since the day she was born, or spent the better part of the last decades knowing her.

It’s been three weeks today, and it’s still hard to believe she’s gone, and on the other hand, it feels like she has been gone for so long, maybe because life as she  knew it stopped last summer.   I feel so privileged to have had Kathy in my life, and as family !  I’m humbled by her courage and strength during some indescribably difficult situations.  She personified so much good.   She always looked for the things to smile at, and had a laugh that I can still hear when I remember good times.  When I found individually packaged slices of Spam on Amazon, I had to pause and remember that I had nobody to send it to… that she wouldn’t be able to laugh at that.

I know I’m not alone when I say that my life was better having known Kathy.

Everyday Poisons… To Which EVERYONE Is Exposed

This month marks 4 years since I started the journey to surviving leukemia (acute promyelocytic leukemia – always fatal without treatment).  Since then, I’ve become much more interested in doing things to minimize risk of relapse, as well as other types of cancers. I’m not perfect at it, but I’m making progress 🙂   I’ve been surprised at the things that put all of us at risk, and even more surprised at the lack of concern by the Food and Drug Administration (FDA) about the safety of personal care products, cosmetics, and household cleaning items.  In the European Union, there are over 1,300 banned chemicals from such items.  In the USA, there are ten.  That’s it.  So, we’re left on our own to figure out what is safe and what isn’t. Skin is the largest organ of the body.  That’s right- skin is an organ.  It absorbs things.  The ingredients in whatever we touch end up in our bloodstreams, and then moves into  other organs.   I’ve known that skin is the largest organ since nursing school days in the early 1980s, but I just never thought about what all it’s exposed to until I learned about a company that focuses on just that…

I’ve recently been introduced to Ava Anderson Non Toxic products.  They are toxin-free, vegan, cruelty-free, and often organic products.  AANT has cosmetics, skin care, personal care (deodorant, shampoo, conditioner, lotion, etc), baby skin care, and household cleaning products (laundry, dishwasher detergent).  They even have essential oil combinations for toxin and alcohol free fragrances and candles.  The company was started by a teenager who was horrified to find out what was considered acceptable in her cosmetics and skin care products.

The following is from the AANT brochure ‘Did You Know?’  (I had trouble matching the font size… it goes to the other line of asterisks):

*****Read your labels and avoid the following chemicals: 


FRAGRANCE is a “trade secret” in the industry and
manufacturers can legally include hundreds of chemicals
in this one ingredient. More than 75% of the time if you have
fragrance, you have legally hidden phthalates (THAL ates),
known endocrine disruptors, that are linked with birth
defects, breast cancer, infertility, liver, cancer, diabetes,
obesity, and now with autism and ADHD in pregnancy
by Dr. Philip Landrigan, Mt Sinai, Children’s Environmental
Health Center. 

PARABENS: are preservatives linked to breast cancer,
endocrine disruption, reproductive toxicity, and
developmental defects. California Study (10/11) of BPA
and methyplaraben combination turned healthy cells into
cancer cells, and rendered tamoxifin ineffective.

TRICLOSAN: is the active ingredient in “anti-bacterial”
products, is registered with the government as a pesticide,
and is a known endocrine disruptor. Triclosan is believed
to disrupt thyroid function and contribute to liver and
inhalation toxicity.

OXYBENZONE and OCTINOXATE: (and other chemical
sunscreen “active ingredients”) are UV ray filters that are
known endocrine disruptors.

PETROLATUM & PETROLEUM INGREDIENTS: endocrine
disruptors and carcinogens.

IMPORTANT NOTE: ALL SIX OF THE ABOVE ARE “ENDOCRINE 
DISRUPTORS” which are important to avoid, because the endocrine 
system regulates ALL biological processes in the body: development 
of the brain and nervous system, growth and function of the 
reproduction system, metabolism and blood sugar levels, ovaries, 
testes, pituitary, thyroid and the adrenal glands. (Natural News) 

The World Health Organization and the UN recently released 
a report that called endocrine disruptors a “Global Threat.” Small 
amounts matter, especially to the developing fetus. 

PEG’s (polyethylene glycol) are petroleum byproducts. 
During manufacturing process carcinogenic 
contamination is created: 1,4-dioxane, which is a known 
human carcinogen, with liver and kidney effects. 

SODIUM LAURYL SULFATE (SLS) and SODIUM LAURETH SULFATE 
(SLES) are considered carcinogens. SLES is sometimes 
contaminated with 1,4-dioxane. You will never see 
1,4-dioxane on a label, as companies are not required 
to list carcinogenic contaminants. 

INGREDIENTS THAT END IN “-eth”: like ceteareth, 
triceteareth, etc., carry the contamination concern 
for 1,4-dioxane. 

IMPORTANT NOTE: all THREE of the above ingredients carry 
carcinogenic contaminant concerns created during manufacturing 
for 1,4-dioxane. The government allows 10 ppm (parts per million) in 
any one product, but no one is testing. 1,4-dioxane can be stripped 
for pennies, and must be done for any product exported to EU. 

RETINYL PALMITATE: in the presence of sunlight enhances 
skin cancer lesions by 21% (FDA, 2011 Report). It is in 
many sunscreens and moisturizers. 

NANOPARTICLES: can cross the cell barrier and drive into 
organs, including the brain in humans. There is no way 
of knowing particle size, unless stated on the label. EU 
manufacturers must list nanoparticles. 

ALUMINUM and metals: these are bio-accumulative, 
meaning they store in your fat cells and accumulate, 
and are very hard to get rid of. 

DIETHANOLOMINE (DEA) and COCAMIDE DEA, LAURAMIDE 
DEA: DEA reacts with other ingredients to become the 
extremely carcinogenic nitrosodiethanolamine. Beware 
of other ethanolamines like triethanolamine (TEA) and 
monoethamolamine (MEA). 

FORMALDEHYDE RELEASERS– DIAZOLIDINYL UREA, DMDM 
HYDANTOIN, QUATERNIUM: found in most personal care 
products. Formaldehyde can cause allergic reactions, 
dermatitis, joint pains and headaches, cancer and 
immune dysfunction. 

SYNTHETIC COLOR/DYES: made from coal tar, which is 
a mixture of many chemicals, derived from petroleum. 
These colors may be contaminated with low levels of 
heavy metals and some are combined with aluminum 
substrate. Aluminum compounds and many heavy 
metals are toxic to the brain. 

GLYCOL (propylene, butylenes, etc): is a synthetic 
petrochemical mix known to cause allergic and 
toxic reactions. Has been linked to cancer, developmental/
reproductive issues, neurotoxicity and 
endocrine disruption. 

MINERAL OIL: a petroleum ingredient that coats the 
skin like plastic wrap, disrupting the natural immune 
barrier, inhibiting its ability to breathe and absorb 
natural moisture and nutrition, and its ability to release 
toxins, which can promote acne and other disorders. 
The process slows down skin function and normal cell 
development causing premature aging. 

TALC: is in the same family as asbestos. Talc is dangerous to inhale and has been linked to ovarian cancer. 

SILOXANES: cyclomethicone and ingredients ending 
in “siloxane” (e.g., cyclopentasiloxane) are toxic, 
persistent, and have the potential to bioaccumulate. 
The EU classifies some as endocrine disruptors and 
possible reproductive toxicant that may impair fertility. 
Research shows some to cause uterine tumors and harm 
to the reproductive and immune systems. Some siloxanes 
can also influence neurotransmitters in the nervous 
system. Cyclomethicone is a mixture of three siloxanes.

*******

Now, that’s a mouthful, eh? The FDA doesn’t care that these ingredients are in our everyday products, or that we subject ourselves to toxins repeatedly. They don’t require labeling that such toxins are in the various personal care, cosmetic, and household products we use, thinking they are safe.

They don’t care that the BABY CARE products in this country contain many, many of the toxins in the above list.  They don’t care that newborns in this country have, on average, more than 275 synthetic chemicals in their cord blood at birth.  Do a search for ‘toxins in newborn cord blood’ and be ready to be appalled.  The ‘tearless, gentle’ shampoo contains many toxins.

One of the worst offenders is air freshener, which I’m guilty of using like it’s oxygen (hey, I have a paper-trained dog, and some intestinal issues… ).  Any product with ‘fragrance’ listed in the ingredients could have all sorts of toxins that are protected by trademark concoctions of smell-good stuff.  Organic essential oils and candles made with essential oils and organic beeswax, coconut oil, and lead-free wicks are better options.

Mascara is packed with poisons, legally. I’m glad I don’t wear make-up.  One less thing to figure out.   Lip balms often contain alcohols- which dries out lips !   What a great way to make sure you keep lubing up your lips !!  Shampoos are full of sulfates.  I stopped using those ages ago, as my scalp peels off in sheets from that stuff.  Antibacterial hand soap actually helps increase the problems of ‘antibiotic resistant’ bacteria.  It’s main ingredient  (usually triclosan) is actually registered as a pesticide…among other problems.  Other products contain ‘nano-particles’. I’m still figuring out what those go in- but I know if I get the Ava Anderson Non Toxic products, I don’t have to worry about it.  They’ve done all of the figuring out of stuff.  BUT, there are other companies that say ‘natural’, ‘organic’, and ‘pure’, which mean absolutely nothing unless you read the label.  There are NO regulations about putting those words on a label.  OR, something could have one organic item in it, but be swimming in other ingredients that are toxic waste.  Not OK.    There are some other good brands of toxin-free cosmetics, personal care items, and cleaners… but know what to look for on the ingredient label 😉

Be aware that Burt’s Bees sold out to a major corporation recently, as did Tom’s of Maine (my OLD favorite toothpaste).  I checked out my old  Tom’s of Maine toothpaste box, and it now contains bad stuff (I don’t have a box from when I first started using the stuff- to be fair, maybe it’s always had something on the ‘avoid list’).  I’ve switched to Spry Xylitol toothpaste.  I also tried Earth Paste (great ingredients)… it looks like grout, but tastes OK, and has absolutely NO foam.  It was kind of weird… but it’s an option.  Check the ingredients 🙂

An option to talc is organic cornstarch (I avoid the regular cornstarch when I can, as it comes from GMO corn).  You can mix it with essential oils in one of those little blender thingies.  If you like the ‘cool’ feel of talc like Gold Bond medicated powder, some tea tree oil (organic if possible) will give you the same sensation, and tea tree oil is a  known antibacterial/antifungal.  Besides being linked to ovarian cancer, talc is bad for  the lungs if inhaled while applying it (so hold your breath the entire time… ).  It’s VERY bad for babies’ lungs.  I like using a 4×4 piece of woven cotton gauze as a powder ‘puff’.  It helps keep the cornstarch less airborne.  But talc should be avoided.  ‘Powders’ can be made from many things.

Whatever you do, be informed. Make decisions based on knowledge.  Don’t assume the FDA has approved or tested anything in the products you use on your body, or in your home.  Don’t assume that the companies that make these toxic products care about your health.  They want your money. Until there is a mass class-action lawsuit naming the products that have these toxins in them, nothing will change- so we all have to be our own detectives and decide what is worth the risk.  Some of these products can cost a bit more than the commonly found grocery store versions- but I can guarantee you, chemotherapy costs a lot more, both financially and physically, but also emotionally.  I figured up what my costs will be to change over to Ava Anderson Non Toxic products (for the items I normally use).  It will be less than $30/month.  I can do that !

Just So Lousy… Death Is An Ugly Business

I’ve been looking back on the last year and a half, and it has become mind-boggling how many of my friends (or their close family members), family, former co-workers, and people who were part of my everyday life are now dead.  I don’t really even know where to start.

Most people know that my cousin died on March 2, 2014, so almost two weeks (tomorrow).  She had a  horrendous fight with neuroendocrine colon cancer, with every complication known to nurse-kind.  I was her ‘go to’ person (as she described me) for bouncing around ideas of what might be going on, and getting my take on what the symptoms she was having could mean.  Being eighty miles away didn’t help, but I did what I could, and my standard line was “you probably need to go to the ER” or “It would be a good idea to call your doctor now and let him/her know what’s going on.”  I was glad to be of some use- and it was also hard to know she was going through so much.

During the last twelve to eighteen months, I’ve looked up former coworkers to see if we could reconnect, and ended up finding their obituaries.   I’ve also been informed about friends’ family members- and in the case of two particular children, it was really so incredibly sad.  One died at age eleven from the same leukemia I had- less than a day after being diagnosed. Another child (8 years old) in that same extended family died from brain cancer, less than a year after she was diagnosed.  She had the best treatment there is (St. Jude’s), and she still lost the fight.  Even though their names are available on public ‘search’ links, I won’t post their names because they were minors- and I don’t have the family’s permission to name them.  I remember some kids who died when I was a kid (friend’s brother had a brain hemorrhage, kid at school had a brain tumor, skating coach’s six kids were murdered by her husband)… but as an adult, with the experience of  pediatric nursing-  hearing the screams of the parents when an infant or child died back in the Pediatric Intensive Care Unit isn’t something I’ll ever forget.  It was the most guttural, primal PAINFUL sound I think I’ve ever heard.

I am going to name a few of  the people I’ve lost in the past few years, as I have nothing but good to say about them- and they too are easily found when looking their names up.  I hadn’t expected to find their obituaries, but ….

Madeline Spenrath, R.N. was one of my nursing supervisors in Kerrville, TX.  She was one of the best supervisors I ever had anywhere.  She maintained a bit of a strict ‘ship’…but she had a heart of gold.   I reconnected with  her after her breast cancer was found, and after she’d had to have her right hip removed from the socket (along with the whole leg), as the cancer had spread.  It continued to spread, and she eventually died at one of the nursing homes I used to work at (it helped to know she was getting good care).   Madeline was ‘good people’.   She was down to earth, very knowledgable, and could get an IV into a mosquito in motion.  She had amazing BBQs for the night shift crowd every year for a long time- those were great.  She had someone tend the pit, and everyone brought a dish to pass.  She was all about team work, and it was obvious she was an amazing team leader- and player. She wasn’t above getting her hands dirty.

I had started looking for the mom and godfather of a baby I took care of for most of the first 18 months of his life when his mom worked.  I worked 2-12 hour night shifts on the weekends, and his mom worked 3-11 shifts Monday through Friday, so it was perfect.  The first 3-4 months I had him 5 days a week (had the car seat so I could get errands done), then cut back to 3 days a week so I had some time off.  But he was my little angel bug.  He’s about 25 years old now- last time I saw him he was twelve !   Anyway, when I looked up Jae Arkeen and Dana Coy, I found their obituaries.  It stunned me when I later found out that Jae had relapsed into addiction, and had elevated levels of drugs in his system that he wouldn’t have touched when I knew him.  That broke my heart. He had been SO solid in recovery.  It reinforced that ANYONE can relapse and die with drugs and alcohol.  I really don’t think he’d mind me saying that, because he’d know it could possibly reach someone who is rocky in recovery, thinking they’re invincible with their 12-Step Program.  He was the kindest, most caring guy, and thought that his godson hung the moon. He was so funny, and great to work with.  He later worked in a very intense area of counseling, and I’m sure that, along with what seems like some serious instability in his addiction recovery, was very difficult.  I had contact with  someone who had been very close to him (that I didn’t know), via e-mail, and she let me know what happened.  While it was horribly sad, there was some partial comfort in knowing it was fast- at least at the end.  I’m sure there were some painful times emotionally for him to get to that place.  I worked with him on an adolescent psych unit… he was great with those kids before he moved into a much more specialized area that is polarizing, and very difficult. He was outstanding with those kids.

Dana Coy (RN in several psych units over the years) had a very brief obituary.  brief battle with cancer.  She had been divorced from her adopted-at- birth son’s dad for years, though the son kept in contact with him- so after losing two people who were so close, I’m sure it helped to have his dad there with a long history together.  Dana and I didn’t work shifts together… but we saw each other nearly every day when she dropped the baby off (starting at 9 days old since he was adopted, so not much time off for ‘maternity’ leave), and when she’d pick him up, or I’d take him to work to do a ‘hand off’ if I was working an 11-7 during the week.  I liked Dana.  She was very easy to interact with when I took care of her son… not high strung about things, and also appreciative of having an R.N. for a regular babysitter.   I loved the baby as if he were my own.  She knew that- and also knew that I knew my boundaries as ‘the babysitter’… I always asked her before doing anything with him.  Whether it was a trip to the store, or just going to the apartment complex swimming pool, I made sure she was OK with it.

Another shock was finding out that Tricia Heath, the administrator (and an RN) at a really nice nursing home I worked at in Round Rock, TX back in the early ’90s had died. She was so supportive when I was dealing  some personal things, and was just a kind, compassionate person, who wanted the residents in that facility to have the best possible life they could in an institution.   I really cared about her, and when she and her family moved to Memphis, TN for a job her husband was offered, it was so sad to see her go.  As often happens, people say they’ll keep in touch once they get settled, and then life happens, and they’re in the wind.  Back then, there were no internet search engines for finding people, and it was all basically just luck if phone numbers were in the 411 for a particular city.  Tricia was a great administrator- she kept the place in line for state requirements, but she also had a heart.  I had a lot of respect for her.

Madeline, Jae, Dana, Tricia, and Kathy were parts of my life for a long time. Madeline, Jae, Dana, and Tricia were people I saw every day I worked, depending on the schedule I was on. I wonder how all of their families are doing.  When Facebook and other internet ‘reconnection’ things were available, it was like we’d never been away from each other. I got to catch up with Madeline the most… Jae, only once with a postcard from somewhere, and Dana only briefly when her son was twelve, and I was in Austin for a week for my work; they came up to the hotel to see me one evening when there weren’t any seminars scheduled. But it was great to see her, and how much M had grown !      Tricia was harder to track down since she’d moved back to TX.   I could have paid to find out where she was, but there was information on that thing that was really too invasive for just trying to send a ‘hi, how are ya?” kind of note.  And then they were gone.

I stopped looking for people.  I sort of don’t want to know who else is gone. If more people pop up via Facebook, or whatever, that’s great.  But I think I’m done looking.   It hurts.

When There’s a Death In The Family

On March 2, 2014, my fifty-five year old cousin died. She would have turned fifty-six in May.  She was only five and half years older than I am, and my closest cousin on that side of the family since we reconnected as adults.  While she lived about 80 miles away, we stayed in contact by e-mail, phone calls, and the yearly family Swedish Christmas Eve party.  I’m still sort of numb, though her death didn’t come out of the blue.  She had a particularly evil form of cancer.  But it’s hard to really accept that she’s gone. She’s the first in our generation of cousins to die, who lived past infancy or early childhood; there were some tragic deaths of infants and children in the family, including my cousin’s older brother at age seven, when she was eleven months old .   If anybody could have beaten this, it would have been her.  For a while, she seemed to be handling chemo relatively well (it’s NEVER easy).  The complications  from the cancer and chemo were another story.  My brain isn’t working that well in writing this, so I apologize ahead of time if it’s scattered.  It’s disjointed, and it’s really, really long…  (for my cousin, the textbook editor… always succinct and grammatically proper… oy).

Our grandmothers were sisters who came to the US via Ellis Island from Nordmaling, Sweden (WAY up on the northeast coastal area, Lapland, reindeer, midnight sun) in the 1920s. They came over on the ship called the ‘Drottningholm’, leaving from Göteborg, Sweden when they were in their late teens and early 20s.  There were 13 siblings in all, and most of them came here, settling in the same general area in the Midwest, in and around Chicago. Nobody spoke English before they got here. They left everything they knew to start a new life .  Eventually, many moved all over the country as their families grew, and jobs took them away from the Chicago area.  Our parents are first cousins (at 81 and 89 years old)- both still very much alive and running around.

When we were kids, that five and a half year difference in age was huge, and I was in the ‘little kids’ group of cousins when we got together for family parties.  The big  yearly family  party was the Swedish Christmas Eve  shindig , and it was THE family party to look forward to  (crazy, crazy fun party !!). There is still a smaller version, that is equally anticipated and keeps that Swedish heritage alive, which is such a treasure.  Whenever possible, family came from all over to attend that party.  I’ve blogged about that elsewhere 🙂   I adored my cousin. She was ‘cool’, and always nice to us younger kids.  I was also the recipient of some of her outgrown toys when I was a little kid, which I still remember (really nice doll buggy, and a whole set of ‘Little Kiddles’ – little 3″ tall child dolls who had their own house that doubled as a carrying case !!).  We lived in the same city for many years, which not all of the cousins did, so I’d see her more often than many of the others of that generation. It was still only a few times a year, yet it was often enough to really like her and enjoy the times I did see her ( there were two of the boy cousins closer to my age that I saw regularly throughout the time I lived at home, before moving to Texas after nursing school in late 1985).  This cousin was someone I looked up to as a kid, and was so glad to reconnect with her when I moved back to my childhood hometown in late 2002.  I moved back a few weeks before Christmas Eve, so we saw each other  for the first time in many years at the now smaller Swedish family party.  We quickly became as much friends as  we are cousins.

When this all started last June 2013 (thereabouts), she called me a few times about some troubling symptoms, and her intense feeling of being discounted by the first gastroenterologist she saw (I later suggested she send her first full colostomy bag to his office).   I’ve been an RN since 1985, and she had some questions, and wanted to know what I thought about this guy saying  she was fine except for a minor problem (for which she was given some topical medication), and did that sounded ‘right’. Though disabled, I still keep my license, and need the 29 years of knowledge and experience to deal with my own medical issues- and am always more than willing to be a sounding board or ‘medical translator’ for family and friends.  This is a cousin who called me in the past for some of her family and  own questions when medical issues came up, and I knew that she knew her own ‘normal’ very well; she needed to listen to her ‘gut, in my opinion.  She’d been in France a few  weeks earlier, and had some vague symptoms there, and they were getting worse.   I told her that if she felt that something wasn’t being addressed, she might contact her primary doctor for a referral to another specialist.  And she did.  She was able to take a scheduled ‘fun’ trip to California after the initial specialist appointment, before seeing the new specialist.  While I was glad she was able to travel at the time, I’m even more thankful now that she was able to have two great vacations before her 9 months of hell began. 

She had an appointment for additional testing, but before she got there had a severe episode of rectal bleeding while at work, and was immediately driven to the ER at a nearby hospital.  She got the preliminary diagnosis (from a tactless ER doc) that she had a rectal mass.  She had known something wasn’t right.  She was admitted for more tests, and long story short, she was diagnosed with a neuroendocrine colon cancer after surgery and the full biopsy, which surrounded her rectum about %75 the way around it (basically like a fist around the end of her colon), and needed a permanent colostomy.  Surgery  took a little over week to actually get done, and in the meantime, she was in intense, constant pain.  She had a moderately ‘normal’ recovery from the surgery, and had to get used to the colostomy, and some decent pain management.  From there, she spent some time in a rehab facility to regain her strength before going home. I remember there was more going on (I still have some brain fog post-chemo), but she was looking forward to getting on with treatment. At that time, the plan was to treat it, and her plan was to do what was needed to  recover, and keep the part of the tumor that couldn’t’ be removed in check.

Now, I get mixed up as to what happened when, but over the next 9 months (give or take a week or two), she had non-stop hospitalizations and  complications with chemo and the cancer.   They were unable to completely remove the tumor because of how it was positioned and the nearby blood vessels, so lymph nodes in that area and additional tumors (spread from the main one) in her liver began to be an issue, growing and causing pressure.  She was given  various types of chemo (including a clinical trial ‘cocktail’ of already approved meds used for a different type of cancer, that was being looked at for neuroendocrine tumors), and I really felt that if anybody would be in the ‘survivor’ percentages, it would be her.  She was in otherwise  good health, and she was young, especially for this type of cancer.  But, neuroendocrine tumors are absolute bastards in the tumor world.  When I was looking up information when she was first diagnosed, I was horrified at the statistics… but I still thought that she had a chance.  It’s never over until it’s over. (Valerie Harper was diagnosed with a brain tumor and given three months to live; that was fifteen months ago, and she has said “Don’t go to your funeral until you’re dead”, and did ‘Dancing With The Stars’.  I love that. 🙂  )  And those statistics never differentiate between ages, other health issues, or actual cause of death. If someone dies crossing the street on the way to their appointment, they are included in the deaths from whatever disease is being studied and reported.  SO, someone who is 85 years old, with multiple chronic diseases, who is hit by a bus going to the store is still included in the cancer death rate because they died during some particular study.  So statistics are iffy- they are a reference point worth considering, but not the be-all, end-all ‘rules’ of survival/death.  I was looking at the possibility that a 55 year old female in otherwise good health could be in the small percentage of survivors- why NOT her?.  I couldn’t see it any other way… but I knew it would be a hard battle.

In the months she was being actively treated, she had a kidney stent (she called me about some nagging and increasing flank pain- and she was right; something was wrong– there was pressure on her ureter from the mass of lymph nodes, cutting off the flow to the bladder from the kidney- so her kidney couldn’t empty out, causing a lot of pressure and pain), low potassium and magnesium, constant vomiting (which can be a cause AND symptom of low potassium- ‘nice’ vicious cycle there),  an infection that I’m foggy about,  multiple fractures in her sacrum, blood clots in her legs, fluid around her lungs, a LOT of pain, multiple adjustments in her medications, a port placed (for giving chemo and drawing blood to avoid multiple IV sticks), medications to deal with medications, a new kidney stent, a lump in her neck from lymph nodes-which caused arm pain from the lump pressing on nerves, and on and on. And during it all, she was mentally going on as if she was sure she would be fine in the end.

I have over 700 e-mails between the two of us from the time just before she was diagnosed until January 2014, when I noticed things were changing because of the change in communication.  She wasn’t answering e-mails or posting as much on the support site for friends and family.  That was different. Something wasn’t right.  I didn’t call her much.  I knew she needed rest (and she had friends who were visiting her, which was SO wonderful), and if she didn’t answer e-mails, she wasn’t online, or up to ‘talking’/communicating. I understood that, and we had  an  arrangement that if she wanted to call, she could- and if she were at a facility, I’d call her back on the room phone so she didn’t have to use her cellphone minutes.  If she was home, she called from her landline.  I waited to hear what was going on from the site set up for family and friends as well.

I saw her at Christmas, and she was in ‘new’ pain (I was SO glad to finally SEE her after all of the  e-mails and phone calls !).  That would turn out to be the fractures in her sacrum, which she had to have glued back together.  She had her bones glued. Back. Together.    She never got a break during the entire 9 months.  There was always something else she had to deal with and/or get treated.    I cried a lot, as I knew that each time she called with something ‘not right’, it meant that the cancer was not giving up to the chemo.  In February, it became official.  The clinical trial meds weren’t working (and those aren’t given when there are ‘known’ medications that work) so that was already a sign that things weren’t going well at all… but someone has to make it, right?  There was nothing left to do. It was a matter of time, and not that much of it.

She called me in mid-February after being discharged from another rehab facility to help her get stronger after the hospitalization for blood clots, fluid around her lungs, neck nodes,  and getting her bones glued.  She  told me the doctors had no more  options for additional treatment. I’d already been told that her prognosis wasn’t good (from dad, via uncle, then e-mailing her mom, who called me back) , but I asked her if she’d been given any time frame and she said she didn’t want to think about time limits. She also said she didn’t feel like she was dying.  I’d learned a long time ago that patients do have some feeling of when their body is not going to recover.  My answer was  “then don’t” !  (Real clinical and technical, I know…).  I didn’t say anything about the time prognosis I’d talked about with her mom.  She didn’t need me to have some sort of mental countdown going on… so I blew that off as best I could.   She said she wanted to check out some alternative healing options and knew of a Chinese medicine doctor  nearby, and I told her she had nothing to lose, and who knows?  Something might help her at least feel better.  So much of Western medicine comes from natural sources (plants, animals, etc).  Why not?  I encouraged her to do whatever she felt was right for her.  She didn’t have anything to lose, and only something to gain.   She wasn’t ever able to find alternatives… she ended up on Hospice shortly after that phone call.

That was the last conversation we had about getting well.  She called me  a few more times, and each time she sounded weaker and more tired, sometimes a little foggy.  She wanted to know about how hospice decides when to do things, and when not to, and if palliative care was better (she wanted to be at home, so that pretty much answered that).  The last time we talked was within a few days of her death, and by then she sounded almost deflated and she told me she was tired of ‘all of it’. She was still denying any feeling of  ‘actively dying’, yet also sort of saying she was ready for it to be done.  She also asked me why I was able to get well (from the leukemia I had diagnosed in late March 2010, and had 19 months of daily chemo to treat, including 50 infusions of arsenic trioxide).  It wasn’t in an angry way, or in any way ‘upset’ with me  for surviving… it was almost a childlike tone, just wanting to understand the incomprehensible. I really didn’t have an answer, except that she got a meaner cancer than I did.    I told her I had just gotten extremely lucky to have been diagnosed while there was time to treat it.  Many people with what I had are diagnosed at autopsy; I know of two people, one a child, who were gone within two days of diagnosis.  I also told her to do this next phase of her life (the last days) however she needed to do them.  I guess it was how we said good-bye.  I didn’t know how soon ‘it’ would be, until I got word from the support site posts that she was sleeping most of the time, and rarely woke up…then I read she had a brief period of awareness and drank some juice.  That is common very close to ‘the end’, and I knew any calls I got from family would be to tell me she had died.   And that’s what happened.

Cancer is a mean, nasty disease, and there are various forms of cruelty that it can throw out to torment people.  She got one of the worst I’ve ever seen in the 20+ years I was working in various areas of nursing, and with other friends and family (my mom had breast cancer, second breast with suspicious cells, lung cancer, and brain cancer and all of the treatments and surgeries with those… and then dementia from the brain radiation, and lived for another 17 years cancer free).  My cousin never got a moment’s reprieve from agonizing pain, or if the pain was doing better something else would go wrong.  It was SO unfair.  It’s never ‘fair’, but she went through more in nine months than most people go through in a lifetime.  It’s not really fair to compare people’s diseases , since whoever is going through something like cancer is feeling pretty scared, and having their own journey with their disease, but from an objective standpoint with nurse eyes, she had it really, really bad.

One thing that she was so consistent with (even before the cancer)… she always knew when something wasn’t right.  She knew when there was something brewing or just outright wrong .  She knew her body- even with all of the ‘new normals’ she had to get used to- and she got things taken care of when she knew things weren’t right.  Everyone needs to do that.  She’d call me and ask what something might mean… and if she should call her doctor then, go to the ER, or wait until office hours (depending on what was going on).  Sometimes she needed an explanation about something, and sometimes I encouraged her to call one of her doctors (we’d figure out which one to start with since she ended up with several).  Other times, I encouraged her to get checked out as soon as she could.

I will miss her so much.  I already do.  And yet I’m glad she isn’t being tormented by that nasty tumor and it’s offshoots and chaos any longer.  She went through all of this with such grace and dignity, and never gave up the idea that she was going to be OK, until the very end.  And then, she went peacefully in her sleep with her mother and housemate at her side.   I’m not going to be able to go to her Life Celebration because of my own medical issues (and the logistics of getting there with various equipment).  I’m upset that I can’t be there.  I know she’d understand, since she knew I couldn’t attend but a couple of hours of the Christmas parties, after dinner was over.  I’m just really sad.  I wish I could hear more about her from the people who are going to be there.   I’d like to be there for her mom, and her  brothers (who have had to say goodbye to two children/siblings now) and their families.  So instead, I write to clear my own head, and in some very small way, pay tribute to my cousin.  There are a lot of things I’ve thought about during this past nine months, and how my cousin made my life better just by being herself.  As adults, we had a great relationship, and I found her to be   a kind, compassionate woman, with a great sense of humor and an amazing work ethic.  She was never judgmental.  She looked for the good in everything we ever discussed.  She was loyal, and able to help me out with her own perspective on a difficult situation. She knew how to have a conversation without injecting drama.  She let me be there for her, when I often feel like I’m not useful for a whole lot anymore.  I just wish it had been for something that left her here (I’ve never had a ‘nurse call’  be for anything good 😦  ).  It’s always hard to say goodbye to someone, and someone in my generation in the family is just plain scary.   Especially someone I really cared about, not just because we’re related, but because she was a person who added so much good simply by being.

I will love you always, K.P.A.