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November 17
St. Francis de Sales, Belgrade
In an interesting behind-the-scenes perspective, the young priest delivered a strong message describing how seminarians are taught to write their homilies “having a newspaper in one hand and the Bible in the other.” He discussed the many voices we hear in print and online; all forms of media inundating us with messages of anything and everything except The Good News. He felt the media has lost focus from
informing, educating, ennobling and instead feeds entertainment purposes distracting us and causing us to “Focus on others’ lives more than our own.” His quip to stop pointing fingers and start lifting fingers was illustrated with several examples that ended with the message to focus on God’s grace in all aspects of life.
Before Mass started, I joined my niece Aynsley in the choir loft and appreciated the immediate welcome into the choir without question as members handed me music throughout the Mass. It was catholic, lowercase, in their all-embracing welcome. From the choir loft I could see all the windows depicting the disciples and did my level best to try to use the objects and symbols that surrounded them like the keys for Peter as clues to help identify them but most often relied on their name. Each church offered many ways for me to deepen my faith.
News: Receiving it, Delivering it
Would you rather be the bearer or recipient of bad news?
What to say to someone who has just been diagnosed? “You are in my thoughts and prayers.” “Stay strong.” “Keep fighting” “I don’t know what to say,” were the most popular and always appreciated, but a simple text “F$@#Nuts” from my straight-shooter friend Kelly was one of my favorites.
Scott told the boys of my first diagnosis. We called them in Duluth with the second. With the third, Scott called them. We always kept them informed and never kept any news from them. I called them when we had progression with four more brain tumors and was able to assure them without crying that I was working through the sadness and thankful the tumors were treatable. Both boys had been to appointments with med onc and rad onc and both made a positive impression on them, which as a Mom was fulfilling. I had always felt respected, but it meant a lot when others appreciated our sons. Maybe I hedged hope that it would make the providers try harder? Regardless, the visits made Mack and Ben realize we were transparent and would always keep them informed.
We used text messages to update our siblings and friends and CaringBridge to spread the message further. Getting the same information to everyone was easier than trying to contact people and have them contact others and the news possibly getting muddled. Without a doubt it was easier for me to nod when someone said they had read my CaringBridge than to have had to relay the information in person and repeat again with another friend. Their comments or hearts or even seeing who read the update boosted my spirits, like a former student or a coworker I hadn’t seen in decades from the College of St. Scholastica or Rush City Schools.
The first diagnosis came on a Wednesday in late October. We had a busy week planned. On Friday I had my friend Sheila’s fortieth birthday bash including a dance with a live band and was not about to miss that! Saturday was a wedding in Albany. Yes to more dancing! Monday was Halloween and I had enough of a passing resemblance to Tina Fey who had a passing resemblance to Sarah Palin that I was set to dress up as her with the signature glasses, a blue blazer and an up-do. This was only my second up-do in my life and I was prepared to rock it from Friday to Monday for all the events. After school Thursday, I had a stylist appointment in Paynesville then drove north to my parents’ farm rehearsing the news on the three mile trip.
My parents were so strong and prayed with me but later both told me separately they cried as soon as my car passed down the driveway. They both died before my stage III and IV diagnoses and though I missed them terribly, there was a small measure of relief in not having to tell them and a huge measure of relief in having them as prayer intercessors for me. Every morning I asked them to pray for me for stable health, progression-free survival, safe and effective treatments and grace to accept my situation.
At work I kept our secretary in the know. Dee was a consummate professional and would have never asked but had seen the increasing frequency of appointments that correlated with my increasing concern. She was also the first to know about the recurrence. Though outside her duties, she never stopped checking in with me. Even when I was on medical leave, she sent notes and trinkets and let me know I was always in her thoughts and prayers.
Gradually I told my close coworkers and friends. The media staff knew I had a biopsy and would get the results via phone appointment. Pat, a thoughtful and sweet coworker, offered me her office so I would not have to get the news in the media center with students around. I transferred the call, held my breath and walked to her office and in seconds was frozen, staring at the words in my hand writing: invasive ductal carcinoma. Calling Scott was awful. It was a few weeks before I felt I could call him without him seeing my name and feeling panic.
Between classes I pulled Pam into my video production class studio. We sat on the red couch and I told her my diagnosis. I remember being amazed at how quickly tears filled her eyes, but she offered me some of the best reassurance: her mother was a long-time survivor. Ten years later, she pulled me aside in a quiet hallway and told me of her own fears waiting on a biopsy. I could only hope to reassure her.
Next I told our principal who sent out a staff message to get the message out to everyone. I kept a group of coworkers, friends and family updated a few times per week via email. I included them all unedited as it was my thoughts and words at the time and I can’t recapture that better:
11/8/08
Subject: Eeyore List
Congratulations?
You made the Eeyore List (name of tumor since it is gloomy, depressing, puce-colored) Please pass along to others and if you’d rather not be on this list, sheesh, let me know since I am impervious to offense at this point. If I missed someone, also let me know. Thanks
Scott and I are off to my oncologist this morning. Results are the most common type of cancer, ductal carcinoma in situ, looks like stage I/II and treatment will include radiation for sure but hopefully not chemo. Considered early detection with great prognosis. It responds well to treatment so I’m hoping we’ll get the lumpectomy scheduled very soon and then we’ll know more about how much it has spread to determine if chemo is necessary.
“Out, out damned spot” Macbeth
Well, that’s neither fun to write nor read, but I’m really holding up well with super support all over! Please have a great weekend!
11/10/08
Subject: boring PET scan = much rejoicing
Hello
I had a PET Scan and an MRI today. PET is clear in all areas except the tumor so that is one great hunk of relief. If the nodes are clean during/after surgery I will be able to avoid chemo and have a better prognosis too.
I’m signing up for a chance to be in a clinical trial.
http://www.centracare.com/community/media_releases/mammosite.html
Randomized study so if I am not selected I will receive conventional radiation after surgery. We hope surgery is soon, soon, soon!
I’m feeling like a dog chew toy: poked full of holes and beloved all at the same time.
11/04/08
Subject: 1 big decision + lots of hopefulness
Good morning~
Webster’s definitions from one of your favorite media specialists:
Mas·tec·to·my
: excisionor amputation of a mammary gland and usually associated tissue
Hopeful:
Hope”ful\, a. 1. Full of hope, or agreeable expectation; inclined to hope; expectant.
Monday’s PET scan was good news, but MRI results came in Tuesday showing two more masses! Finding out that Eeyore has playmates benign or not was a real set back. It was just as hard to hear as the original diagnosis since it complicates everything.
Wednesday was another biopsy (no results yet, grrrrr) and a general surgical consult that all helped me to decide unequivocally to have a mastectomy. Another biopsy via MRI is scheduled for 11/19 since they can’t seem to locate mystery lump # 3 with ultrasound, but I’ll likely cancel since we’ll just remove it all. Good riddance!
This afternoon Scott and I meet with a plastic surgeon about reconstruction then a nice restaurant with Mack. Ben’s got a sleepover so we’ll all have a nice night.
Speaking of night, I know I’ve made the right decision since I’ve slept well the past two nights. I’m still up early and look as pale as a ghost, but that’s normal for me. I really feel healthy and my spirits are high. Scott has been a pillar of support and the boys are handling things well.
Hopefully they will be able to schedule everything soon. I should be able to avoid radiation. The surgeon said it would be rare in my situation for the lymph nodes to be affected. They will still check during surgery but hopefully I won’t need chemotherapy either. Recovery from surgery sounds rough but the peace of mind that reoccurrence is exceedingly rare will be worth every ache and pain plus I have a huge list of books to read and so much support–thanks to all of you!
11/15/08
With more information, I decided that bilateral mastectomy is the best option for me. I’m relieved really and am considering a Bon Voyage party at Hooters–ha ha!
Plastic surgical consult went very well! Dr G is one of very few doctors in MN who can perform DIEP, using a flap of stomach tissue but not muscle for reconstruction. His schedule is the only factor–many elective surgeries scheduled for tax purposes. I’m hoping they can rearrange but it might be 3-4 weeks. Dr G, general surgeon and the oncologist were not concerned with the wait. Surgery will be 3 hours mastectomy and 10 hours reconstruction. (Glad I’ll be out, but feel for my waiting room entourage!) Five days in the hospital then 2-3 weeks at home before I’ll be able to return to work part-time. DIEP is a less painful recovery since muscles are not affected and satisfaction rate is very high.
We had a phone call during Dr. G consult for an appointment with general surgeon, Dr. A, who was concerned about the second tumor finding and fully supports the bilateral decision. He was very reassuring that the nodes would “most likely not” be cancerous but of course no way of knowing until surgery. He really praised my positive outlook– Scott says the surgeon is fond of me. I hope so!
Both cancers are hormone positive which means they will respond well to tamoxifen which I will take for the next five years. Only 60% of cancers work this way so it was nice of them to both match up! Very unusual to have two different cancers at the same time. Just more reasons I’m at peace with my decision.
I’ll send out the surgery date as soon as it is scheduled.
Thanks again for all your prayers and support. I can feel the love!
TTFN~
Linda
PS Added a few to the list. Eeyore is the name of the first tumor since I think it is gloomy, depressing and puce-colored. Roo is the wee second tumor. TTFN–ta ta for now, Tigger’s exit line. Very profound, I know!
11/19/08
Surgery is set for Dec. 19th. My general surgeon had the day off, but is coming in since we worked to get everything in place. (He really does like me!) Oncologist, care coordinator, both surgeons have no concerns with the delay. Other option would be to have mastectomies now then wait 2-3 months for reconstructions but I’d rather have everything at once with their assurances and I think the boys would have a hard time with two surgeries. It works out very well for both our schedules and the boys too plus we’ll get to celebrate a lot of Christmas festivities beforehand. Lots of silver linings. We’ll be busy until then so that’ll help.
I’m in touch with a few survivors whose hospital stays sounded pretty rough, so I ask that you send thoughts and prayers, but hold off on visits until we’re home. When I’m up and around, we’d love some company at home.
Five days in the hospital means happy birthday to me and some new holiday hit classics:
“I’m getting morphine for Christmas”
“Twelve Days of Recovery”
“It came upon a bedpan clear”
Ok enough.
Thanks again for all the prayers and positive thoughts!
12/7/08
Not too much news, we’re mostly waiting for the big jigsaw puzzle surgery. Oncologist follow-up is Jan. 5th when we’ll learn what adjuvant treatments are needed. I’m lowering my threshold of hope from no nodes involved to planning for chemo. The onc. ran an online predictor tool which put me at 74% nodal involvement, but Scott and I ran numbers later ( using our super Wonder Twin mental powers of technology and medicine) and it could be as low as 44%. We should have results back on Christmas Eve. I’ll send out a post-Christmas letter if we have lovely news otherwise I’m taking a free pass and won’t send cards this year.
The boys are handling things well. Ben was concerned that we might have to delay opening presents and was working on celebrating early. Those are normal thoughts for a fifth grader who is itching to open gifts. We had to pry a wish list out of “I just want you to get better” Mack, but I noticed he’s shaking presents and counting gift tags as usual. Scott is so supportive, encouraging and knowledgeable; I count my blessings every day. I have a little present for them for every day I’ll be in the hospital.
Today we’ll be working on creating pony-tails for the few weeks when I won’t be able to following surgery. YIKES!!!! They all think I could wear a hat but I’ll have them french-braiding in no time!
It’s such a busy, wonderful time of year and that helps keep us all pleasantly distracted.
Thanks again for all of your kind thoughts, words and prayers!
12/19/08 Scott wrote this
Hey Everyone,
Wow! Today was a day God was watching over our little fam. The news surrounding Linds was all great. Her primary surgery went well; the sentinel node biopsy resulted in harvesting 3 nodes all of which were benign. This was the best case scenario for the staging of her cancer. The final path report will be known in about 4-5 days. If this holds true (where no lymph nodes are affected), her prognosis is awesome! Due to her young age and the fact that two different types of tumors were found, she still may need chemotherapy; however, she may only need the adjuvant therapy. This decision will rest between Linds and the Oncologist.
Her reconstruction surgery also went unbelievably well. Her plastics doc was massively impressed with the outcome. He reported hers was the quickest bilateral procedure he’s performed. He stated the vasculature was not at all tortuous and was easily transplanted. He also stated he took very little muscular tissue which should allow for a faster, less painful recovery. Can you believe all this! What a great day! I gotta be the luckiest dude alive. Linds was a rock through all this, totally fired up and ready to roll.
Thank you all for your love and support.
Love,
Scott
12/21/08 Scott wrote this
Hello,
Quick update on Linds. She had a little setback in her recovery Friday evening; needed to go back to O.R. to remove a hematoma on the right. She lost a bit of blood, but things are right back on track. She’s had 3 units of blood and her hemoglobin is up to around 10, which is satisfactory. She was transferred from the progressive unit to a regular room today. We walked about 200′ and she looked great with no light-headedness or nausea. She’s been eating well and reports she is feeling much stronger. We’re still targeting Tuesday for discharge. (the boys and I are really excited to have her back home–It’s way weird around here without her.)
Best of all: We got the final pathology report back today and the news was awesome! There was no spread of the disease to the lymph nodes. Both tumours were less than 1.5 cm with their margins well defined. This all means a wonderful prognosis for our little lady! Thanks again for all the wonderful support you’ve given to our fam.
Happy Birthday to Linds (12/22/69)!
Later,
Scott
12-22-08
Yippee I’m home! I was discharged this afternoon.
I’m glad Scott kept everyone up to date. ( His updates made me cry when I read them today) It all really went very quickly for me and I really didn’t have much pain. The second surgery and frequent monitoring due to low blood pressure made for little sleep, but with 3 units of blood, I’m back on track. Everything progressed quickly and here I am typing away. I had excellent caregivers from nurses and nutrition staff to physician assistants and surgeons. I have nothing but rave reviews.
All of the support and the clear nodes report really kept me going. It was terrific to have the patho report back, it is framed up next to RHS students in pink and staff heart picture, plus all the cards and gifts from family and friends. I’m overwhelmed with the outpouring of support. Sheesh….
On the homefront: the boys have been so amazing and helpful. The house was spotless and they’ve been jumping up to get everything. A girl could get very spoiled here! I have plastic surgery follow-up on Wednesday and hopefully everything will continue to heal up. Scott is the best care provider of all so I’m in good hands here at home. Can’t wait to sleep in my own bed!
Hugs to everyone! Our prayers were answered!
12/29/08
Today was the best by far! I was doctor-approved to drive, got my stitches out (new belly button), walked a bunch, saw a few friends as the boys redeemed gift certificates, and best of all had the last surgical drain removed. I won’t complain since it was necessary but it is sooooo nice to have it out. The plastic surgeon was very impressed with the rate of healing and overall progress.
I also was relieved to find out that my insurance will cover the OncoType “test with the ability to predict a patient’s benefit from chemotherapy as well as her risk of recurrence” which will be very helpful as we try to determine what will be the best option. We meet with Dr D (oncology)on 1/5. We’ve been warned that it will be a longish appointment will lots of numbers–risk, relative risk, absolute risk, etc. so I’m glad that darling math-savvy Scott will be there too to help process. We heard great things about Dr D while I was in the hospital.
I really feel quite well and can return to work “as tolerated.” Does that mean how well other tolerate me as well?!! I’ll see how this week goes and then will look at a wee bit of time starting 1/6. I promise not to over-do it and know my limitations.
I truly believe that all the love and support and prayers have a profound effect and could never adequately thank everyone enough!
Happy New Year — I feel like mine has already started!!
1/5/09
Updates from the follow-ups:
Dr. A, general surgeon, was very pleased with surgery. He likes to have at least 5mm of clear margins and my tumors had 14mm and 11mm so that is excellent. Neither tumor had any vascular invasion which means neither were moving into the bloodstream. He was impressed with recovery and said I was past any chance of infection or complications.
Dr. D, oncology, gave us a few options but mostly we are all waiting for the OncoType results. So we’ll wait in the tundra cold while the tumor samples enjoy their stay in a lab in San Francisco :-). I offered, but they do not need me to go too. Rats! The lab tests 21 cells 3 different times so the score will be invaluable in making decisions about chemo. Best cast scenario is a low score of recurrence which means chemo would have very little if any benefit. A score in the high range would indicate that chemo would increase odds of survival and I’m ready to go down that road too. A middle score means weighing the odds and lots of calculations and agonizing decision-making.
Today I’m going to work for only 5th hour. It’ll be great to be back even for just a little bit. When Dr. T (covering for Dr G) cleared me to work “as tolerated” he advised against “sit-ups, jumping jacks or burpees.” ( I haven’t done a burpee since 1982.) Sit-ups = YIKES! I have a scar from hip to hip from the tissue donor site so that will not happen for a very long time! Usually I do a lot of calisthenics in the media center, but I’ll lay low for awhile! = -)
We have a 4pm appointment today with Dr. G, plastic surgeon, to make plans for the next stage(s) of surgery–all out-patient with local anesthesia. Some interesting decisions to make!
We’ve been receiving lots of great meals and treats. I almost feel guilty since I’m feeling so well. It has been such a comfort. We plan on oodles of reciprocation!
Warm and toasty regards,
1/9/09
Onco score was mid-range with odds of recurrence unacceptable to us so we’ll be setting up chemo plan on 1/26. I’m happy/relieved to have a treatment option that improves the survival outlook. I should be able to complete it by the end of April.
“Fun” stuff = wig shopping. Check out sample # 1. I’m checking to see if I can get the face and the dress too! I will also alter my personality to match the wig so lookout!!!!
Have a great weekend!
1/26/09
Today we met with Dr D, oncologist, who went over the oncotype test results that really indicate that chemo is beneficial and the best option so we’ve got a bevy of appointments–baseline heart test tomorrow and port placement next Monday. Port is local anesthesia 1 1/2 hour procedure and 4-6 hours monitoring. Scott and I have a collection of crosswords and sudoku to complete (thanks Sheila C!). The port is for the IV chemo and also can be used to draw blood. After three pokes to get one little blood sample today, I’m glad it is an option!
I’m setting up chemo at Paynesville Area Health Care and am opting for treatments every two weeks with four courses of AC. Dr D said most patients return to work after the appointments and few suffer nausea. I have four types of anti-nausea meds to take so unless the meds make me sick I should be fine! Fatigue is the major side effect and is cumulative (Yes, I know a few math terms beyond the Dewey Decimal system) Neulasta is a shot I’ll need to help boost white blood count. It causes aching bones as they work to produce more bone marrow. Amazing pharmacology! Hair loss should land during President’s weekend so I’ll have a few extra days to adjust. I have my cranial prosthesis (wig) prescription ready. There is a salon just two miles from home that sells wigs so I’ll see what groovy options they have. I had my haircut in a short bob last week and a few brave souls (mostly teenage boys) have asked if it was a wig so operation “cut hair like wig” has been a success!
If all goes well I should be done by March 19th well before Easter. I’m going to give up hair for Lent!
Thanks for all the kind thoughts and prayers–it helps exponentially!
2/16/09
Subject: hair today, gone tomorrow?
Hair is hanging in there. One chemo drug is likely to cause hair loss and the other is total hair loss described as “dramatic.” I’ll let you know if I hear any theatrical lines or gestures as the hair falls out! I have a hat with me at all times just in case. Mom’s been sewing up the coolest hats in a myriad of colors and patterns–my favorite is a print my Dad picked out–I have the greatest parents! There is even one for St. Pat’s. No one would be surprised to see Dad celebrating his Irish heritage in one too!
Today I spent hours at CentraCare genetics counseling/testing. Results should be in 2-3 weeks after insurance gives the nod. Three outcomes from the testing:
- Positive for Breast Cancer gene 1 or 2 (BRCA 1/2). Hopefully not this outcome since it affects family members and also carries very high risk of developing ovarian cancer and other cruddy things. Triple Yuck.
- Negative for BRCA 1/2. They may look for other options but likely we’d chalk it up to environmental causes and just follow regular screening for other cancers.
- Ambiguous. Regular screening.
Their predicting tools suggest 13 and 17% that I’m BRCA positive. Low but worth testing. If you are related to me, I’m praying for us all and will let you know the outcome.
Follow-up labs and oncology tomorrow, then more labs + Chemo # 2 on Thursday. Scott is able to be at my appointments since these are scheduled in Paynesville. I’m spoiled rotten with the greatest husband too!
Take care~
2/20/09
Subject: A harried adventure/50% done
Yesterday the hair started shedding in the afternoon. Scott gave it a tug during Chemo and came back empty-handed. By 5:00 the boys test tugs provided enough hair for Mack to create a fu-manchu–see attached pic plus a few other gems.
Please know that I was quite ready since this means that the Chemo is also killing any cancerous cells lurking about. I think a few were hiding in my left pinkie toe. No tears here! A few observations about hair loss
- It is cold!!!!!!! Hats are my new friend.
- Finding hair you’ve lost is worse than losing it.
- My eyelashes look longer so please check them out while they are still here!
- Scott, Mack and Ben are excellent barbers if you ever need a mohawk.
Chemo # 2 went so well I forgot to mention it! Side effects were so minimal. Maybe the slightest of headache but otherwise I feel GREAT! I think I look “sicker” because of the hair loss, but sure don’t feel it. Hopefully the steroids and white blood count booster go as well.
Have a great weekend!
2/27/09
Subject: kids say the darndest thing
Wow!
Just a couple comments/revelations on the wig journey:
I’ve bravely shown a few people my skull since the hair is falling out in patches and I look like a feral tiger cat with mites. I make them all promise to laugh before I show them. Tuesday it was really coming out so I went outside on the deck and shed all over our dog, Jet. Fair play, doggie. It was nice that she didn’t bark at me as if I was a stranger. Wonder if the snack had anything to do with that?
A classmate of Mack: “Hey, your Mom doesn’t look like she’s even had chemo except for being all pale and wrinkly.”
Mack: “um, that isn’t from Chemo”
—
A student passing me in the hall: “Did anyone ever tell you you look Sally Field?”
Me: “You mean in Gidget,–thanks!” knowing full well she’s thinking of the MOTHER in Brother and Sisters. PS Sally was 23 when I was born and is the Boniva spokesperson!
Mack had a nightmare in which he had chest hair running in a diagonal sash across his body. It has given me great appreciation for HAIR LOSS. Imagine if chemo caused uncontrollable hair growth–beard, mustache, knuckles, ears– I’m relieved to have it falling out!
Have a funny weekend~
3/6/09
Subject: chemo # 3 = only 1 left!
Another tolerable treatment with only one to go! In two weeks I will be done with Chemo and in 3-5 weeks will start Tamoxifen for 5 years. Sadly my oncologist is relocating to be closer to family, but I trust that Paynesville hospital administration will pick another great provider. I’ll have frequent follow-ups for a few years, but really am feeling that the last chemo will seem like a finish line.
Today two great things perked me up. A hairdresser at school visiting her daughter complimented me on my hair and highlights, but realized it wasn’t real when she felt it. And a senior boy that I rarely see said it was cool that I don’t seem sick at all. I sure don’t want to be a role model for cancer, but hopefully if it has any impact, I do want it to be as positive as possible. And I really feel quite well. So it is cool. Very cool.
We’re settling into some season 4 Grey’s Anatomy after a dreamy dinner ala Dorweilers.
Many thanks to everyone for all the continued support!
3/19/09
Subject: Yippeeee!
All done. Please celebrate by having a drink yourself and one for me too (I’m not drinking so you must). Scott, the boys, and I are planning a theme celebration with details to follow.
The nurses let me ring a bell four times for my four treatments and sent me off with flowers, a certificate, muffins and hugs. Plus my Dad was there for a different appointment so it was a great send-off. There are still lots of follow-up appointments and port removal outpatient surgery, but as Ben pointed out, we can now refer to breast cancer in the past tense.
Happy everything!
4/16/09
Subject: More happy test results
Mayo Clinic genotype test results show my DNA will metabolize tamoxifen so I’ll have that added protection for five years. I’ve been on it for over a week and haven’t detected any side effects.
I said “Good Riddance” to my IV port which was removed on Good Friday and by Sunday was golfing up a storm. I don’t cry easily, but was choked up with happy tears on hole number 2 after a lovely drive. It’s so nice to be recovering!
Mack’s middle school has a huge number of students out for golf and with his permission, I started coaching on Tuesday. I’ve always planned to coach golf once the boys were out of school, but this will work out well for this one season while I carpool Mack anyway. The kids are great and the weather has been phenomenal.
Prom is this weekend and I’m half of the emcee duo. It’s such a blast. I’ve been joking that I might wear a tiara instead of the wig, but I bet I chicken out (especially since I do not own a tiara.) I will likely try out the false eyelashes since sadly they are getting sooo thin. I don’t mind the hair loss, but not having eyelashes is what makes a person look sick. It’s ironic that the better I feel, the worse I look! Please reassure anyone who asks that I feel fine, really and truly.
We’ve started puttering in the yard and it’s so great to see all the signs of Spring. I’ll always associate this one old winter with cancer so I’m more than ready for Spring!
—
I had not joined Facebook until 2009 when two students, my niece Danielle and Olivia, a knowledge bowl student I knew well, created the group “We Support Mrs. Liebl.” The messages from students were so uplifting, especially from former students. I read pages of notes one week after surgery, the day after Christmas. One student’s support really stuck out: “You got this. My mom made it through cancer and you are way more kick-ass then she is.”
Feeling, mighty healthy, I stopped writing the Eeyore List at this point.
Stage III
With the Stage III diagnosis, I put aside my reservations and started a CaringBridge site. I had always associated the site as a bearer of very bad news, so had avoided using it until my own was, well, very bad. It was a tough click to create my own site even though I had helped Mom with hers.
Once again, my principal helped spread the word to my coworkers:
9/7/2016
Difficult News:
Everyone,
I learned over the weekend some troubling news regarding one of our own.
Linda Liebl has learned, through her doctor last week, that her cancer has returned. According to Linda, an axillary tumor was discovered in her armpit. Future tests will be conducted this week to determine the extent of the disease and the plan for treatment.
As Linda and her family begin the second journey to battle this disease, I have been spending the weekend thinking about her and her family as well our staff here in the secondary building. I have always been impressed with the ROCORI community and outpouring of support when one of our family members is going through a difficult experience. I am reminded almost daily why I am ROCORI Proud to be part of such a great place to work.
As a staff we circle the wagons and come together in times like these. So as they move forward, I ask that you reach out when you can to lend a hand, give a hug, or just be present to listen. I believe in the power of family and our ROCORI family is so strong.
Please keep Linda and the Liebl family in your hearts, thoughts, and prayers as they begin this very difficult journey.
Stage IV
I used CaringBridge to spread the word when I hit stage IV adding this entry right after “Congratulations: See you in February” written barely one year before. As my health was stable, I had not added any journal updates.
“Words that eviscerate” Journal Entry by Linda Liebl — August 23, 2018
Concerning. Malignant. Tumor. Progression. Metastatic.
I woke this morning at 3am with an intense headache and proceeded to vomit 14 Times in 3 hours. This headache led to a day in Paynesville hospital with head CT that indicated swelling followed by a brain MRI that shows three small tumors. I am on steroids to reduce the swelling and already had a follow up scheduled with my oncology on Tuesday. I half expect a few more tests ordered soon, but for now ask for prayers and peace for our family. My boys are so good and loving, just like their amazing Dad and it hurts so much to see them suffer.
I apologize if I did not contact you directly. It was such a shock as I feel so healthy — biking 12 miles Tuesday, walking golfing yesterday—so I am blindsided. Though I kept a tiny fear of progression, there is the fully life-altering gobsmack of being diagnosed again, again, again.
My state of mind is a little befuddled, but my spirit is strong!
“At least there’s not a stage V….” Journal Entry by Linda Liebl —September 6, 2018
Today’s PET showed mets in a rib near the original tumor and lymph nodes and also some spinal mets. We are taking an aggressive approach with chemo again-same regimen I had and tolerated well 2 years ago plus radiation to those areas. Before we tackle the bone mets it’s CyberKnife in St. Paul to obliterate the brain tumors. Consult is next week for that followed by the radiation procedure 10 days/2 weeks after. Possibly having some of the rib/spine radiation there too. When your oncologist leaves your appointment to talk directly to your radiation oncologist, you know they’ll have a plan.
…
There is some peculiar comfort in being Stage IV… it cannot get to stage V. I don’t have to wonder when that might happen.
CaringBridge offered a way to reach out and I soaked up a lot of support from the comments, heart emojis and sheer number of people who read the journal entries. It was both awe-inspiring and dreadful to have thousands of visits, but I really did try to focus on providing The Good News.