18 years since adenoid cystic carcinoma diagnosis & treatment - I have reached old age

Back in 2006 when I was all alone in that radiation treatment room, having the machines zap my head to get rid of the leftover cancer cells, I held on to the wish that I would reach old age. This year, as my cancer diagnosis is old enough to vote, I am happy to tell you, my reader, that I have reached the old age category. 

Nothing new on the cancer front - my annual oncology visit was uneventful, still clear lung x-ray. On the old age front - much has been happening. I had been experiencing extreme leg swelling that I could not keep controlled with over the counter compression stockings, so I visited our vascular clinic (yep, leaky veins) and had a cardiac scan (heart is fine, no circulation issues there). I was then sent to our lymphedema clinic where expert occupational therapists wrapped me up every other day for three weeks. I had daily exercises to go along with the wrapping which reduced the fluid and swelling in my legs. I didn't know much before I started the treatment, and not much is out there about people's experience with the wrapping. I was fearful of what all of this would entail - and didn't get much information from my caregivers until the morning the wrapping took place. Thankfully, my lymphedema was caught in the early stages. Because my mom had severe swelling in her legs the five years before she died, I am very motivated to do nearly anything to stop the swelling and maintain movement. I don't want to get trapped at home like she was. 

Now that I have been released from the every-other-day wrapping (which wasn't bad except for the inability to get a shower whenever I wanted one), I have to maintain the work to keep fluid from building up. This involves a few more layers to wear. Back in 2006, I said out loud that going through cancer treatment meant one never had to wear panty hose again. As they say, "never say never" - I am pretty sure I jinxed myself. I now have compression panty hose that I have to wear during my waking hours, proving that whatever power is out there has a wicked sense of humor. Putting them on in the morning is my new aerobic activity. I will never again go to the bathroom quickly, and now hang out in the handicapped stall in order to haul the panty hose back up to do their rightful compression action. (I know, too much information - tough, I already said I reached old age.) The image on the panty hose box is deceiving - no, my legs do not now look like this photo on the right! I have another layer of leggings to wear if I am hiking or exercising to increase the compression on my legs. 

Making my way around campus wrapped in tight panty hose and working to get strength back into my legs reminds me that all of us are walking around wearing layers of something - sadness, grief, worry, fear. I learned first-hand about living with the layers when I was going through the initial cancer surgery and treatment. I am now reminded daily about this fact again. I hope it keeps me open and understanding to the great students and professionals around me who are dealing with their own layers while caring for me and other patiets at our medical center. I am glad I can remain committed to do a good job in my health science library career and be open to what the future still holds for me. I wish you, dear reader, a good year ahead as you work through or with your own layers. I still hold hope that #HumansWin.

Bathtub Lasagna

I am not much of a cook for family get-togethers since losing most of my taste in 2006. One item that everyone likes and I enjoy cooking is Bathtub Lasagna. Sharing the recipe complete with the cooking adventure for you here. Have a good time, and I hope reading it makes you smile. 

Bathtub Lasagna

A piece of my digital art:
 distillation
of a rainbow scarf.

The week before, go to Sam’s or Costco, buy bag of sweet peppers and a bag of onions, chop them up, combine them in ziplock gallon bags. Freeze.

While at Sam’s or Costco, get foil steam pans. I use the square ones so I can share. If I am not sharing, I use my covered turkey roaster pan.

Once a year, go to an Amish or another type of bulk food store, and buy a container of pizza spice. Keep in freezer.

Once a year, go to your local cattle rancher, buy a beef. You will need at least 3 1/2 pounds of 90% hamburger.

The day before, go to Aldi-

Buy two jars of red pesto

4 large cans of crushed tomatoes

2 cans of diced tomatoes ( if they have fire roasted, yay!)

Celery

6 containers of whole milk ricotta

2 dozen eggs (you will only use 4, the rest are because you needed eggs)

2 boxes of lasagna noodles (regular or oven ready- doesn’t matter)

4 bags of Italian shredded cheese

2 bags of shredded mozzarella

1 container of Parmesan and Romano cheese

Cooking:

Brown the hamburger. Add a cup of chopped celery, add half a gallon freezer bag of the frozen onion pepper mix, add the cans of crushed tomatoes and diced tomatoes. Note: hold the crushed tomato cans under the kitchen faucet and rinse the tomatoes stuck to the side using a small stream of water; pour the resulting 1/4 cup (approximately) of liquid in each can into the sauce pan. Stir in 1/4 to 1/2 cup of pizza seasoning (use what your crew likes). Cook for a while, adding good smells to your house. Note- you could add chopped zucchini if it is summer and your neighbor surprised you with a full grocery bag.

After it has cooked for a while, stir in the two jars of red pesto and turn off the burner. Let the sauce sit covered while you mix the white layer.

The white layer :

Find your biggest mixing bowl- you will need the stirring room. Ask the tallest person in your house to reach the bowl you only use for holiday cooking- that is the one you will need.

Open and dump in the ricotta, more pizza spice, half of the Parma/romano container, and 4 eggs. Stir with a whisk. If you thought fast enough, do the eggs first so you can whisk them good before adding everything else.

Assembling the lasagna :

Whatever pan(s) you are using, spray the pan with Pam. It won’t keep all the hard to clean bits from forming, but you will feel better for doing it.

Put the pan(s) on the counter next to the stove where the sauce is cooling. Put the huge bowl with the white layer on the other side- you will be alternating layers of sauce and ricotta filling as you assemble the lasagna. Put the shredded cheese bags nearby- open as you need them.

Depending on the age of your oven, you can preheat it now or about halfway into the assembly process. 375 degrees F.

Layer order- figure on three layers total in the smaller steam pans or up to 9 layers in the turkey roaster :

1. Meat sauce
2. Noodles
3. Ricotta mixture
4. Shredded Mozzarella
5. Meat sauce
6. Shredded italian cheese
7. Noodles
8. Repeat the layers, ending with the meat sauce and remaining Italian cheese/ mozzarella ( a mix of whatever is left over)

At this point, you will realize you should have purchased 3 boxes of noodles and 2 more bags of mozzarella so you sweetly ask another person in your house to go fetch one more box of noodles and 2 bags of mozzarella from whatever nearby store. You will probably forget to edit the ingredients list above, too. 

You may have sauce left over.

Cover the assembled lasagna(s) tightly with foil (yes, even if you are using the turkey roaster, and spray the food side of the foil with Pam). Put the pan(s) on baking sheets to catch overflow (also cover the baking sheets in foil for easy clean up. Always be kind to your future self!) Put in oven- bake 50-60 minutes, depending on what other kitchen activities are going on.

Turn off oven when the timer goes off and leave the lasagna(s) in to set. You don’t have counter space to put it on anyway. Wait about 30 minutes, or longer if dinner isn’t for a while and you don’t have housemates hollering for the garlic bread yet. Pull the lasagna(s) out and remove the foil and see if the noodles have soaked up the sauce in an appropriate manner.

Now that the oven is freed up, make your garlic bread and go toss a salad. You are ready to eat.

17 years on after Adenoid Cystic Carcinoma

If you are reeiving this because you are subscribed to my blog, I imagine this update after such a long silence shocked you a bit. Grinning over here - that isn't the intent. I just wanted to check in. 

I am still on this timeline with you. AdCC hasn't come back yet, though my doctors get at least one boat payment from me each year when I go in for my check-ups and x-rays. It isn't all a fairy tale, but no one's life is. I have outlived my mom (one of her wishes when I was diagnosed in 2006, since her fear was that she would outlive me.) Mom was boss to the end. Sharing her life story here (video made my my nephew, now videographer for the Kansas City Chiefs, so our family has a bit of Super Bowl history :-): https://youtu.be/nG6phetrppc?si=sVtDmIZs53xbP9Mk. She was my strength and advisor, the wall I bounced my angst tennis balls off of during our hour-long phone calls, even up until the very last week of her life. Thanks to her, I can continue to look forward to what tomorrow brings. Even when the tomorrows seem scarier than usual. 

I have been in grief counseling for about 6 weeks and can recommend it for anyone suffering a loss (in my opinion, that includes having a cancer diagnosis, since I lost my former self when diagnosed and treated all those years ago.) Mom's hospice recommended a counselor trained by the Grief Recovery Institute: https://www.griefrecoverymethod.com/.  I highly recommend this program and its trained experts, based on my experience with my Omaha-based counselor, Sandra Frost. 

My husband is wonderful and as supportive as ever as we both travel into aging together. He indulged me in renovating our house to be as accommodating as possible for us to live comfortably and independently for the next 10 years. This meant a kitchen and main bath redo, resulting in a walk-in shower complete with grab bars, and a new deck. We have rolled with this like other disruptions in our lives, and continue to look forward to good adventures to come.   

I have a granddaughter that joined her brother in 2022, adding more love to our family circle. Her picture on this post shows her wearing the dress I made for her mom in 1991 when my husband returned from the Gulf War. I am very glad I am around to see the continuing family history. 

I hope some of these ramblings, along with the others in this 17 year old blog, help you if you or someone you love is going through cancer treatment. I am glad to be here to say there are tomorrows, and despite life being different, it is a rich one. I may update this more often, even if it just to comment on the weather. Remember: #HumansWin. 

15 years on...

I am in the region of adenoid cystic carcinoma survival stats that I never thought I would - 15 years since original diagnosis and treatment. I also never thought I would be doing it during a pandemic, proving I can't foretell the future. According to anniversary sites, the 15th anniversary is crystal. As a lover of shiny things, I have purchased crystal drops and strong suction cups to hand out to friends and co-workers so they can have shiny plus rainbows in their spaces. I haven't connected the gifts to my anniversary - I don't want to alert the ACC that is lurking. 

At 15 years, I don't have any new effects, still dealing with long-term radiation side-effects, neuropathy, headache, head's sensitivity to cold (skull insulates, after all, so my missing section is noticed). With COVID-19 taking up hospital and clinic attention, I have not gone in for any scans since 2019 (this also means I haven't had any effects to lead me to get scans.) I would say I have been happy for the lack of scan-dancing and test result anticipating, but that COVID-19 thing has filled every stress gap left by the lack of cancer scans. 

The rest of my life: continue to teach future health professionals best methods to use when seeking information, promoted to professor on July 1, grandson nearly 1-year-old now, husband mending well after a bit of surgery of his own, grown children on their own, and living their own lives, made one post-vaccination trip to see my mom and planning one more before Delta or other variants overtake our surroundings. I have managed to stay in touch with friends during the distancing portion of the pandemic; now that we are heading into Delta territory, it looks like the distancing will continue. I am truly grateful for all my friends and family. Their support has made my survival a rich life, not merely surviving.

We said goodbye this spring to another ACC wearer, Pat Shannon: https://www.ridinon.org/pats-final-ride. I had become friends with Pat on Twitter during his cross-country motorcycle trip. I appreciate how he faced ACC on his terms and will keep his model close by as I move forward on my path. Pat did more than live a life - he inspired others to keep an adventurous spirit even when dealing with cancer limitations.  

Things are going pretty well

The weather is fantastic - in the 70's today, windows are open and the roast that I am cooking for tomorrow's dinner is making the house smell like a home. These days, eight months into the COVID-19 pandemic, there are no small positive moments. There could be major negative positives - various family members (including myself) have been tested for the virus, so far none are positive. Grandson is growing - we witness his progress nearly every day, thanks to FaceTime and AT&T. Still no hugs in person due to where we work at the hospital. Neither myself nor my wonderful husband could live with ourselves if we caused that little guy or his parents any illness. 

The rate of infection and healthcare utilization are ramping up significantly in our community. I wish I could offer some respite to the great healthcare professionals who care every day for the new and existing COVID-19 patients. All I can do is stay home, mask up if I go out, and keep my visits outside of my house to a minimum. I fear that the celebration around Biden being named the next president will be super spreader events - people just don't learn. 

NASA must know that I want to travel - they offered me a boarding pass :-). Reminds me of my Pluto trip: https://cheekylibrarian.blogspot.com/2015/03/do-you-remember-that-pluto-time-capsule.html.  It would be so cool to fly around the Earth in the space station! Maybe my grandson's generation will have regular space visits as an option. 

Be safe out there, and stay well. We need you.

5th of July

In 1981, I had the wonderful opportunity to take a theater and arts class at State Fair Community College. Up to that point, I had not traveled much, and only knew of New York through the New Yorker magazine. The semester-long class culminated with a week in New York, including 3 plays and 2 museums plus two group dinners. We were advised to not wear gold necklaces (they could be ripped off, prized for the high gold prices), and to not talk to anyone coming up to us on the street as they were likely pushing drugs. (Hey, it was 1981, and we were coming from a small town in Missouri.) I enjoyed the adventure, and had my horizons widened daily. One of the plays we saw was 5th of July by Lanford Wilson. Richard Thomas played Kenneth Talley, Jr. I loved the play, and the opportunity to talk with the cast afterwards. I remember holding hope that my gay relatives, neighbors and friends would not face the challenges the play uncovered...

Today is another 5th of July. Dang it, I am holding hope again, this time that my relatives, neighbors and friends won't be experiencing chronic illness or dying because of COVID-19.

It has been 14 years since my diagnosis and treatment for adenoid cystic carcinoma. If I had known all those years ago that I would survive my cancer treatment to face a global pandemic in 2020, I still would have fought hard to recover. There are still hopeful moments this year while the pandemic rages on in the world. Viewing things with a glass-half-full perspective: we are expecting to welcome our first grandchild in a few weeks; I am able to visit by phone with my fri3ends & senior relatives, and cancer has not returned. I had a right going-over during the Fall of 2019 due to symptoms that were attributed to aging instead of ACC mets. I am once again a boring patient while my healthcare professional caregivers are fighting another battle to return others to health.

Adenoid Cystic Carcinoma in the news

It has been a while since I did a news post. Today I will add a few links to news items (anyone following this topic probably already knows most of the news items), along with a couple of links to search Twitter, since it is a good source of up-to-date news on this rare cancer.

Brave Like Gabe Running and Bike Trail has been named in Perham, MN. Named in memory of great athlete Gabe Grunewald, who died of Adenoid Cystic Carcinoma earlier this summer. I miss Gabe's strength and model example of how to continue living with this rare cancer, and wish her family and friends peace.

Drug development news: HLB's subsidiary LSK Biopharma has been awarded permssion for Phase 2 of rivoceranib. The trial isn't yet listed on the ClinicalTrials.gov site when searching for Adenoid Cystic Carcinoma trials - stay tuned.

Wired article on carbon ion therapy experienced by an Adenoid Cystic Carcinoma patient, which promises to be even more effective than proton radiation therapy. There are two trials listed as recruiting on the ClinicalTrials.gov site.

Search for latest #adenoidcysticcarcinoma on Twitter.

Checking in, marking 13 years wearing Adenoid Cystic Carcinoma

Not much happening with the Adenoid Cystic Carcinoma side of my life these days - all recent scans have been unremarkable, and I am still NED (No Evident Disease). I am taking the view that 13 is a lucky number, and recognize that it is a pretty amazing thing that I am without evident cancer this many years after my initial diagnosis and treatment. I still keep up with ACC news, and share what I find on Twitter (you can search on Twitter for other news items on the topic using this link, or this link.) For times when I have questions regarding treatment plans or research on the long-term progression of this disease, I use my local library for information. Since I work at a medical center, I have had occasion to share what I have learned and experienced with students and faculty, which I hope brings some value to all of what I have gone (and continue to go) through.

Just an adenoid cystic carcinoma wearer sharing happiness with the world

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I am reaching out to all of the healthcare professionals and healthcare professional students that have had contact with me and other cancer patients. This head and neck cancer patient thanks you for your dedication, and resilience during the long dark hours required on the pathway to attaining your professional expertise. 

L-R: 2nd place winner & wedding officiant, groom, & bride
in Mountain Home, Idaho

Thanks to you and your grit, I kept my grit and made it to see my daughter and new son-in-law happily married on October 20^th. We drove to Mountain Home, Idaho, and witnessed the wedding as it took place before the award ceremony at the World IHGF/SAAA Highland Games. (If you are interested in how the games scores went: the groom came in 6^th, and the wedding ceremony was conducted by the 2^nd place award winner!)

Reception in Lincoln, Nebraska

One of my colleagues asked me what it felt like to have a married daughter. The flood of emotions at that moment kept me from saying what I truly felt – like I had won the biggest lottery in history. During my own dark days of treatment during 2006, I was hoping to make it to high school graduations, afraid to contemplate future weddings. Yet here I am, 12 years later, still casting a shadow and paying taxes (grin!). And I know I didn’t do it alone. I will never know how my personal cancer path influenced or impacted the many health professionals and health professional students that joined me along the way. Nurses, physicists, physical therapists, family medicine physicians, otolaryngologists, medical nutritionists, medical librarians, my family, my friends… I only hope that this message reaches some of them and lets them know that I benefitted from their hard work, and they made my life better through their care.

If you are a healthcare professional or student that works with cancer patients, I am also grateful for all of the traffic jams, DMV lines, bills, frustrations, slow grocery check-outs, missed deadlines… basically, my day-to-day life, too!

I have no idea what is coming up next. As an ‘elderly’ radiation therapy patient, I expect more side-effects of the original head/neck radiation than anticipate adenoid cystic carcinoma returning. When I have new pain, I don't leap to "mets have arrived", or I would be one very crazed Cheeky Librarian! (Ok, to be honest: more than I currently am.)

If you found this message thanks to Twitter, I hope it was worth the trip, and brightens your day. Please share it with all healthcare professionals and students you may know. If you are someone like me that wears adenoid cystic carcinoma, you can search Twitter for more news on this rare cancer using #adenoidcystic and #adenoidcysticcarcinoma. 

Here’s to all adenoid cystic carcinoma wearers enjoying more lifetime milestones together, thanks both to our personal grit, and to the healthcare professionals and students dedicated to the science and research that makes our shared world a better place.

Adenoid cystic carcinoma: latest scan dancing

Scan dancing. Definition: the periods of time that a chronic cancer wearer undergoes scans and tests

to see if a)cancer has returned, or b)is there a new cancer lurking, or c)neither a nor b, just the new normal.

I had experienced increased pain in my left jaw this spring. Saying 'increased' is relative - pain in its various levels has been my companion since the 2006 radiation treatment. It is an acceptable trade-off and one that I knew about might happen when I agreed to radiation treatment to begin with. One morning in May, though, it was a whole different kind of pain, with the added fun of additional paralysis to my mouth. I had been told way back in 2006 to watch for increased pain and paralysis, as it might be a sign of osteoradionecrosis (ORN), meaning the jaw was dying due to the radiation it received way back then. I hustled in to the Head & Neck oncologist, who looked me over and sent me to a dental oncologist (did not know that was a specialty) for a look-see. The dental oncologist looked me over, said that ORN was not taking place, and agreed that I was not going to be their new project. I was nervous at the thought that I might be losing my jaw despite all the work I continue to do to keep it healthy (mainly keeping my teeth healthy so nothing needs worked on or pulled out). [Please note below what my plans would have been if I did have to have my jaw removed. Hope it brings a smile. -th] I returned to my head/neck oncologist, who ordered an MRI (already due for one in August, just made it a couple of months early). MRI didn't locate any critters, looked about the same as the one I had back in 2015. So the increased pain level is pretty much my new normal. Luckily, the paralysis has subsided, only a little residual drooping compared to what I was experiencing before). I try to not take too many NSAIDs by sidetracking my focus: look at pretty pictures, watch comedy, visit with my loved ones by phone and in person... lots of ways to get my mind off the pain. Work is really great now, with the library kicking into high gear to support the medical center's mission. I am grateful to have a job where I can add value to others' lives, even if it is small in the wide scheme of things. 

Visited my great dentist and her team today, and had more reassurance that all my choppers are doing fine. All of my healthcare team and I have agreed that I can watch the pain for another couple of months, and if it is still as big a deal as it is now, additional exploration can be considered then. For now, I am cruising and very glad I am not an oncologist's current project. 

Note: If I ever do have to have my jaw removed: the usual treatment is to take out the jaw bone and replace it with another bone, maybe a section of rib or one of the unimportant leg bones. That is way too ordinary for me. I would like to have a 3d printed jaw that I would wear on the outside of my skin like a member of the Borg. I want it to be studded with rhinestones and flashy as all get-out. Ideally, I would have one printed up for each holiday and season, and change them out like jewelry. 

Rare Disease Day 2017 - and this rare disease wearer is very grateful to NORD

The National Organization of Rare Disorders (NORD) is holding its annual Rare Disease Day tomorrow, Feb. 28. According to their definition of "rare disease", it is "any disease, disorder, illness, or condition affecting fewer than 200,000 in the United States..." NORD keeps track of and shares information on over 7000 diseases and disorders, and is working to increase awareness about rare disorders, particularly how those of us handle life while wearing a rare disease (before and after diagnosis and treatment). This year's theme is Research, a topic near and dear to my heart, since I am only casting a shadow today because I was diagnosed & treated (and still experience annual checkups) by my research-focused heroes at Nebraska Medicine and University of Nebraska Medical Center.

I checked to see if I could locate statistics on the incidence of Adenoid Cystic Carcinoma.

• I found this 2012 article that just might include my own 2016 diagnosis statistic: Adenoid Cystic Carcinoma of the Head and Neck: incidence and survival trends based on 1973-2007 surveillance, epidemiology, and end results data. (Note - table figures were corrected in this Erratum, published later in 2012-please check this out for correct figures.) Yep, ACC fits the rare disorder category - they picked out 3026 patients diagnosed with ACC in the head/neck in that 34 year span. The article has been cited 18 times by articles in PubMed Central, and around 97 times as recorded by Google Scholar - take a look if you want to check out more recent research on ACC. Remember - always discuss with your healthcare provider if you find anything in research articles that might apply to your own condition.
• I found figures on a site maintained by the American Society of Clinical Oncology - Cancer.Net: 1200 people per year diagnosed. Sources for facts are listed as: Oral Cancer Foundation, and the Adenoid Cystic Carcinoma Research Foundation. 
• According to Adenoid Cystic Carcinoma Organization International (ACCOI), who based their statistics on SEER data, ACC is diagnosed in 1224 of all people diagnosed with cancer in the US each year. They also show Australian figures for 2006-2010, showing an average of 81 ACC cases reported per year. (I am not a biostatistician, so I may have misinterpreted that table.)

If you have been diagnosed with Adenoid Cystic Carcinoma, there are communities on the Internet that exist to help you lessen your isolation. I have linked to some on the right side of my blog, and you can message me to ask me about other sources. You can also find a local library that offers consumer health information services, and get immediate access to quality, evaluated information that you can take to your healthcare provider for interpretation.

Cheering for all of us rare disorder-wearers, and thankful for NORD to keep the awareness level up. Especially cheering all ACC wearers, no matter where it was first diagnosed. I am heading for the 11 year marker since initial diagnosis, and planning to celebrate many more survival anniversaries.

A decade of Adenoid Cystic Carcinoma-full of living

Cloud-filled sky tonight 

Today was great. I woke up and enjoyed getting ready for work with my husband. At work, I joined my team mates as we participated in a planning retreat for the department. After work, I joined other library colleagues to wish our boss a happy birthday at a local watering hole. I came home to fix a simple supper for dear husband. We experienced a thunderstorm, which brought cooler breezes to our neighborhood. We also watched a 1980's comedy movie, remembering when we first viewed it on post at Grafenwoehr, West Germany (it was West, then). All of this normal, everyday, some might call boring, life experiences took place ten years after my initial surgery and diagnosis for Adenoid Cystic Carcinoma, and is the type of day I hoped for during those dark weeks of treatment when nothing was normal, and never boring. I figure the greatest thing I can give those expert healthcare providers that reviewed my case and came up with my treatment plan is to have a lot of normal days like today. Every one of the days over the past 10 years I am glad I didn't miss (both of my kids' graduation, along with all of their cousins and our close friends' kids; being here to see my kids become the adults we hoped they would be (and more!); the arrival and departure of Cheeky; improvements at work as we continue serving the unique information needs of the same healthcare providers that treated me and thousands of others over the years; a new cancer center rising up on the campus that will treat thousands more in the decade to come; seeing my dear husband every day; visiting with my moms on their spectacular 75th birthdays; laughing with my friends; walking in the grass, under the trees, along the beach, on the city street; doing the chores; fixing the yacht; living the good life...) I am fairly sure that I didn't take everyday for granted before that summer of 2006, so cancer didn't give me this characteristic (I think my mom raised us to embrace a fleeting life.) On the other hand, cancer didn't take anything from me that is a big deal. Yeah, I cope with some different stuff (headaches from the plate in my head, lack of reliable tasting, yearly awareness that the cancer bus can come back for me while being aware that a diesel bus may beat it), but no more so other humans on earth, and a lot less than most. I am a very grateful being, and very happy to still be casting a shadow and sharing the earth with you, my care providers, my friends, and my wonderful family. I am rotten at predictions - can't do lottery numbers, won't try to guess if I get to see another decade. For now, I am very happy to have had the day I experienced, and am looking forward to a regular day again tomorrow. How lucky can one girl be?

Today is the 29th National Cancer Survivors Day...

...but as a nearly 10-year wearer of Adenoid Cystic Carcinoma, I celebrate every day, not just one per year. I wasn't paying attention to the day's arrival, actually. Happened across an announcement on Facebook or Twitter or somewhere. Evidently, many are jumping on the bandwagon - I even saw this message from Social Security. Here is the homepage of the National Cancer Survivors Day Foundation: http://www.ncsd.org . They have registered the phrase "National Cancer Survivors Day", which I guess would be done if one was going to promote such an event. They even have a catalog for official merchandise (but the deadline to order was April 1.) They have a  decent page of links for information on Cancer Survivorship issues: http://www.ncsd.org/cancer-survivorship-issues .  I tried looking up more information about the foundation, but wasn't successful. Since they have been holding this day for 29 years, I figure they know what they are doing.

The world is a big place, and I am glad if someone finds value in this type of activity. For this cancer wearer (and for a couple of my fellow cancer wearers that no longer have active emails - man, I miss them!), I would not like it much if my family or friends paid money to celebrate, Hallmark-style, my having outlived cancer. Or if they do, they know they are doing it for their own enjoyment only. I think the folks that know me well also know I am not a fan of any color of ribbons or merchandise that calls attention to a cause, nor the annual Relay For Life events. If you want to send me a greeting, just wave my way, send me a text, comment on this blog - you don't have to participate in any days or -thons or celebrations in my name, ever. Although, I am up for poking fun at the universe in snarky ways, so if you wanted to establish a cooking contest in my name (me, the one that doesn't have a reliable sense of taste, remember), have a great time, I won't stop you. I will join you in the snickering, Muttley-style.

Should you choose to donate money to cancer research, go for it. Be sure to check out the foundation to see if they put most of the funds they raise to the cause they promote, or if they spend a larger percentage towards non-cause administration. If you are looking for an ACC-related organization, I have mentioned my admiration and thanks for the scientific research work being done by the Adenoid Cystic Carcinoma Research Foundation http://www.accrf.org - look them up and see if they would be a group you could support.

And as I foreshadowed in the first sentence, I am coming up on my 10 year anniversary. I figure I am still enjoying life, casting a shadow, and paying taxes, thanks to support from my family, friends, my excellent healthcare providers, and you - my blog reader.

Farewell to a fellow Adenoid Cystic Carcinoma journey blogger

I just learned that Kathryn Seeley died March 23. She blogged her travels with cancer at A Rare Cancer Journey. Her last post, dated January 25, 2016, included a list of "do's and don'ts when it
comes to things to say to a cancer patient (or about me)":

1.  "She lost her battle to cancer."  (Read here.) The implication is that I just didn't fight hard enough.  Nothing could be more offensive.2.  "God never gives you more than you can handle."  This is another annoying cliché.  The God I believe in would never test people to see how much they can handle.  How mean would that be?3.  "Everything happens for a reason."  Really?  Bullshit.  This is one of the most insulting things a cancer patient can hear.  Classic Blame The Victim.4.  "What is your prognosis?"  Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.  And the list goes on....

I thank her for sharing her path for the rest of us to learn from, and for all the effort she put into keeping the world informed and aware.

Adenoid Cystic Carcinoma in the news

Two fantastic bits of news regarding ACC (also referred to as AdCC). 

First one is about the past, in the form of a research article just published online February 12, 2016:

Sweeney L, Vermimmen F, Sinske S. MRI of a recurrent adenoid cystic carcinoma of the trachea, treated with fast neutron therapy. British Institute of Radiology. DOI: http://dx.doi.org/10.1259/bjrcr.20150201 . The open access article describes a 51 year old patient who was operated on for ACC in 1981, and came back in 2011 for neutron radiation therapy for a recurrence. I am feeling for the patient for going through all of that, and for being a fellow wearer of ACC. My takeaway: pay attention to the number of years between procedures: 2011-1981= 30 years, the longest I have ever heard of someone with ACC. I did a happy dance when I figured out the time span. The patient might still be alive - the article goes on to say " Clinically, the patient is doing very well and is not reporting any late side effects of the treatment. "     Assuming the authors' last article update was before they submitted it in 2015, the patient would be 34 years past initial ACC treatment. I am cheering him and me and the rest of us wearing this cancer on with the hopes that more of us experience this longevity. I would welcome meeting this person via email, any day. 

Second one is about the future, regarding a cancer vaccine that is being developed in Australia:   VCA grants include Peter Mac trial of a new vaccine to prevent recurrence of colorectal cancer http://bit.ly/1TSAydA .  News from Australia says a cancer vaccine for colorectal and adenoid cystic carcinoma will be tested on humans in 2017. Professor Robert Ramsay is leading the team http://bit.ly/1pxwnaA . I find the information shared promising, since they say they will be conducting human testing in 2017. Note: this isn't a done deal. Something could change their plans, the human testing might not take place, others' research could preclude what they are studying at Professor Ramsay's lab. I am glad there is any research going on regarding this type of cancer, which is why I share the news I find.