- Meat sauce
- Noodles
- Ricotta mixture
- Shredded Mozzarella
- Meat sauce
- Shredded italian cheese
- Noodles
- Repeat the layers, ending with the meat sauce and remaining Italian cheese/ mozzarella ( a mix of whatever is left over)
Sunday, November 26, 2023
Bathtub Lasagna
Saturday, September 16, 2023
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?
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.
Friday, July 23, 2021
15 years on...
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.
Saturday, November 07, 2020
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.
Sunday, July 05, 2020
5th of July
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.
Wednesday, August 28, 2019
Adenoid Cystic Carcinoma in the news
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.
Sunday, July 28, 2019
Checking in, marking 13 years wearing Adenoid Cystic Carcinoma
Saturday, November 03, 2018
Just an adenoid cystic carcinoma wearer sharing happiness with the world
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L-R: 2nd place winner & wedding officiant, groom, & bride in Mountain Home, Idaho |
Reception in Lincoln, Nebraska |
Thursday, June 22, 2017
Adenoid cystic carcinoma: latest scan dancing
Monday, February 27, 2017
Rare Disease Day 2017 - and this rare disease wearer is very grateful to NORD
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.
Wednesday, June 29, 2016
A decade of Adenoid Cystic Carcinoma-full of living
Cloud-filled sky tonight |
Sunday, June 05, 2016
Today is the 29th National Cancer Survivors Day...
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.
Monday, March 28, 2016
Farewell to a fellow Adenoid Cystic Carcinoma journey blogger
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.
Thursday, March 17, 2016
Adenoid Cystic Carcinoma in the news
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.
Sunday, February 14, 2016
Adenoid Cystic Carcinoma in the news
2. Found this recent literature review article in an online journal not indexed in PubMed: Pinakapani R, et al. Adenoid Cystic Carcinoma of the Head and Neck– literature review. Quality in Primary Care (2015) 23 (5): 309-314. http://primarycare.imedpub.com/adenoid-cystic-carcinoma...
3. I found this first-person account of life after ACC, written by Cathleen McBurney: https://www.mdanderson.org/publications/cancerwise/2015/12/embracing-life-after-adenoid-cystic-carcinoma.html .
4. Bill Allen passed away in January, after wearing ACC for 10 years. He will be missed by many of us in the ACC community: http://www.friedrichjones.com/obits/obituaries.php/obitID/192387/obit/William-G-Bill-Allen .
5. I am glad to read that Carla Offenburger of Iowa celebrated her birthday (and her own life) recently. Her wishes for her 57th year are inspiring! (And I may have to mirror her practice of celebrating a birthday *week* instead of just a day!) This Cheeky Librarian is cheering you on from this side of the Missouri River, Carla! Maybe we can get together sometime and give ACC a run for its money. http://offenburger.com/index.php/on-her-57th-birthday-she-is-celebrating-life-and-new-ways-in-2016/ .
6. In my opinion, the best honor given to an ACC-wearer-that-is-no-longer-with-us took place in January: Precision Decision Surf Festival, in honor of Lorton Mitchell: http://www.coronadonewsca.com/news/coronado_island_news/precision-decision-surf-festival-in-honor-of-lorton-mitchell/article_461eef02-be09-11e5-b477-2ff55d0b5426.html . I hope they had a wonderful time. I looked on their club page http://www.coronadosurfingassociation.com , but didn't see any event photos posted. Their festival in honor of Lorton makes me want to do something equally as wonderful for those that I have said good-bye to over the past couple of years.