I love this post too! My mom died just over a month ago and for the last 10 days or so, a woodpecker has come right to the middle of the wall, just on the other side of my sofa and has pecked and pecked this soothing and soft sound. My mother was an avid bird lover so I have also felt that it is my mom's spirit, checking in with me, like she used to. And the day after she died, a blue jay came and hovered outside my father's window and just looked in at him, for a long minute and my dad, a very old fashioned traditional guy felt my mom and said to the blue jay, "Hello! What do want to say to me?" and it flew away. My mom is still around - I can feel her.
This is the poem I wrote for my mother and read at her memorial on Saturday.
By Melissa Palma
I remember a wild childhood
barefoot, exploring flowers, insects and rocks on the grass, in the sun, up close
finding possums on our nature trail
swimming hanging on to wolfie’s fur
listening for woodpeckers and killdeer
crossing the country road to gather eggs from the coop and visit the piglets
eating a regular dose of ipecac with every new poisonous plant I consumed
being barefoot and happy and free
I remember mom talking to everyone around her, like at her recent appointments at the cancer center-
“I like your pin. Is that a chickadee? Have you seen any blue birds this summer? We got babies this year. Do your Baltimore oriels prefer orange slices or grape jelly? Oh yeah? You live off Huron River Drive? You must know the Finley’s. They live over there too. Your maiden name is Struble? So is mine. We must be cousins.”
and on and on and on like this, with everyone
I remember an open door
no one knocked
our house was open to anyone, a refuge from the trouble in their life
our mom was the cool mom because she let you be you
always accepting and never judging
you could be fully yourself
I remember how special she made us all feel
I remember her adventurous spirit
taking us to Mexico to ride horses on the beach
Hawaii to explore volcanoes
Chile to try native fish head soup
and just one year ago, St. John to snorkel
and mom probably had cancer but we didn’t know it yet
and we handled the hurricane with grace
fully embracing our time together
I remember talking to mom almost every day for the last 40 years
talking about plans for the day, nothing special
and how I almost called her today, forgetting for a moment that she won’t ever answer
that we can’t talk about nothing special anymore
I remember my mom’s spunk, her feistiness
her boundless energy that inevitably inspired awe
she never sat still –
not until the very end
I remember her warm smile
her dry, biting, smart ass sense of humor that she inherited from my barber grandfather
and how every summer, we went to Bois Blanc where mom and I sat with our feet dangling out the back of the rusted red truck, driving down the one dirt road, singing-
Down by the old (not the new but the old)
Mill stream (not the river but the stream)
Where I first (not the second but the first)
Met you (not me but you)
I remember being so proud of my mom
she was an incredible phys. ed. teacher
she bought sneakers in all sizes for the kids who didn’t have any
she walked around the cafeteria using reverse psychology, just daring kids to try their broccoli and not love it
she had a library in her gym of women, physically challenged and minority athletes and when students read a book, she gave them a U of M cup
I remember my mom on the ground, in the dirt, in the garden
humming silly songs in the kitchen as she made homemade spatzen to go with the sauerkraut
deadheading flowers as she walked down Main Street
teaching me, my friends, my children,
anyone near her was a beneficiary of her endless love of teaching
and I remember the expanse of her love of her grandchildren
and their love of her as they bound to her excitedly exclaiming “Nana! Nana! Guess what?” as they jump into her lap, snuggle in and feel the loving warmth enveloping their little bodies
My mom was giving, loving, caring
compassionate, laughing, sharing
I remember loving her deeply
caressing her forehead
telling her to relax, that it’d be ok
and now it is, for her
she is free from pain and fear and for that I am grateful
but right now
it doesn’t feel ok for me
I miss her
I’m sad I have to remember
wanting the past to be present
wishing for a future tense with my mom
Here is my mother's obituary, if you would like to see it.
Thank you for the kind words,
I am very sad to share that my mother passed last night at 10:45pm. She was only diagnosed 5 months ago with cholangiocarcinoma or liver cancer (they never really knew). She did not respond to the chemo and she had multiple blood clots throughout the months and on Monday morning, she had a massive stroke. I sat with her and spoke with her and held her hand and caressed her forehead for almost 50 of the 60 hours she was at the hospital and I know she could feel our love enveloping her. She wasn't alone for a moment.
I wanted more time with her and wanted my kids to grow up surrounded by her love and support but the next few months or even longer would have been filled with so much suffering due to her cancer so I believe this was the most compassionate and humane way she could have passed away. I will miss her so much.
Thank you for all of your wisdom and words of encouragement over the last 5 months. You are an amazing group of people who brought me comfort when I was scared and confused.
I am very sad to share that my mother passed last night at 10:45pm. I wanted more time with her and wanted my kids to grow up surrounded by her love and support but the next few months or even longer would have been filled with so much suffering due to her cancer so I believe this was the most compassionate and humane way she could have passed away. I will miss her so much.
We made the decision (one we know that she would want) to move to comfort care so she is unhooked from all machines except oxygen and is receiving morphine to help her be more comfortable now. Thank you for the words of support. They mean a lot to me right now.
Thanks everyone. I have spent the last 30 out of 34 hours at the hospital. My mom is not responding to people or opening her eyes. Yesterday when we first arrived, she had her eyes open and she smiled when she saw my brother and I but last night and today, she won't open her eyes or respond no matter what the doctors do to arouse her. They don't think she'll make it out of the hospital but she has held steady today...no major changes. CT scans show no new swelling. Chest xrays show no new information. Pulse ox is lowering throughout the day and her breathing is labored. The docs think that respiratory issues are going to be the most problematic symptom. There were a few very scary moments last night with her breathing and she does not want to be resuscitated so we might have to make a quick decision to put her on morphine and that would signify end of life care because she would not be intubated. Agh. This is scary and exhausting and awful.
I'm curious jathy1125, did your mother recover from the stroke physically and mentally or was she pretty debilitated?
Thanks again everyone. I can use all the words of encouragement I can get. And please send healing energy, prayers, whatever you believe to my mother, Ann.
My mom had a stroke this morning some time between 7:30am and 9:30am. My dad left for work a little early today and said goodbye to her at 7:30am and she was totally normal. My mom's friend, Judy, was fortunately coming over to take her to the U of M luncheon and she fortunately came a little earlier than usual, around 9:30am. She found my mom laying on the ground, unconscious. She called the ambulance, my mom was brought to U of M and by 12 noon, we had to make a decision to try a procedure that was time sensitive to try to take out the clot (a risky procedure but our only option) or we could do nothing. We decided to try the procedure and it helped a little, the doctors got one clot out but another remains. They couldn't take a second one out fast enough and the risks for another stroke were too high.
She cannot talk or move so much or respond and the next 3-5 days are still touch and go because there will be increased swelling in her brain. They also started her on heparin which is risky either way because if they do not give her a blood thinner, she will probably develop new clots and with the heparin, there's a risk of increased bleeding in her brain. You may visit if you'd like. If all goes well, she will be here for at least 10 days before going to a rehab center. All this on top of her cancer. Are strokes common among people who have cancer?
Re: Why is Xeloda kicking Lauren's butt when 5-FU did not? (7 replies, posted in Chemotherapy)
Pam, I am sorry to hear that Lauren is not tolerating Xeloda well. My mom was only ever on Gemzar, Cisplatin and Xeloda so it is hard for us to sort out what made her feel which side effects, but the whole 9 weeks she was on this regiment, she was exhausted and slept a lot each day and she didn't eat barely any food at all. Fortunately she did not get any hand or foot syndrome symptoms but tomorrow she starts Nexavar and that seems to be a fairly common side effect so lots of lotion helps, I hear.
It was so nice to meet you at U of M last week! I am glad I saw pictures of Lauren and recognized her and got to say hi to you both! She is even more beautiful in person than in her pictures!
Good luck. I'm thinking of you!
Thanks everyone. I think I will just emailed Dr Z, like you said Pam, because he responds better that way. And Helen, I totally agree with you that this is the perfect time to re-group and get strong again but today was another set back on that front. My brother found a really good oncologist nutritionist specialist and we've been waiting to see her for 2 months. Well this morning we got the call that she has an appointment open today at 4:45pm. Great news, right? Well, not exactly. My mom and dad had dinner plans and sad today is not a good day to go and since my brother is golfing, he can't go either. I tried to tell my mom that her health is more important than seeing these friends tonight and that she should come first. I said that they will understand if she has to cancel. I said my dad could go to the restaurant and I'll drop her off at 7pm after the appointment. I said that this is perfect timing because she has 2 weeks off any chemo where she can get stronger and healthier. It's perfect timing also because I just took a chef over to meet her on Tuesday (is that just yesterday?) and for the chef and the nutritionist to work together while she is NOT on chemo is a great opportunity. She said no, not today. I started to cry and said that I am working so hard to help her but she is not taking herself seriously and all I want is for her to feel better and there's an appointment today for her that could help her feel better and she won't go and I don't know when we can get back in again. Ugh! I feel very frustrated right now. I told my dad that I need to step back because I can't care more about mom than she cares for herself. I can't be more invested in her health than she is. I said these are all just choices we get to make and it is symbolically very significant that she is choosing dinner over going to this appointment today. I'm at a loss.
Pam, thank you. I was looking at your blog and started getting teary eyed looking at your beautiful family and knowing what you are going through as well.
I was prepared for a long fight so Dr. Z's recommendation to stop chemo today, that minute, was jolting. To not recommend some other chemo or treatment to actually fight the cancer was disheartening on top of that. And while my mom really likes Dr. Z a lot, I am always wanting to ask a lot of questions and feel rushed, like there's no time to breathe or process or think or formulate another question before he's gone. He is really good at responding to emails very promptly and I very much appreciate that. Today I am probably a little frustrated that it didn't feel like he was fighting for my mom.
And yeah, I believe that tomorrow or the next day I will feel hopeful again but this is our first major blip since her diagnosis and I am just giving myself permission to feel crappy and scared for the moment.
Now I just need to figure out how to go to sleep. I think I'm a little afraid to go to bed because if I lay down with no distractions, I'll start thinking and worrying and letting more fear enter the picture.
I often think about you and Lauren too and am sending healing energy your way.
This is so interesting...my mom got her CT results back today and the tumor was mainly unchanged (grew .02 cm, from 6.8 to 7.0) but the oncologist made it sound like after 9 weeks and 1 round of 6 chemos, that we are done trying. Period. His next recommendation is Sorafenib, or Nexavar, but with the goal of prolonging life but not shrink tumors to get to resection. We just found out about her cancer in April so to give up the goal of resection this early on was kind of shocking to me. Hmmmmmmm. Thoughts?
I'm thinking about you and Lauren and hoping that this new chemo will be more effective. I also got some bad news from Dr. Z today about my mom. Oof.
Today was a rough day. The oncologist at University of Michigan said that the chemo has not been working, meaning that the tumors have grown a very small amount and the blood markers for her cancer have gotten slightly worse over the last 3 months. So he stopped treatment immediately (my mom was supposed to have chemo today but it was cancelled and she got a blood transfusion to raise her hemoglobin instead). The plan will be to take 2 weeks off of any treatment and see how she is feeling to reassess what her baseline is. Then we can decide if we want to try chemo again (the goal of this is to reduce the size of the tumor enough that it can be operable) or her second option would be this chemo by pill called Sorafenib, or Nexavar and right under the name on the fact sheet the doctor gave us, it says, “Treats late-stage kidney cancer and liver cancer that cannot be treated with surgery”. So that is a treatment that is supposed to help prolong life but not shrink the tumors (I don't like this option). The third choice is experimental treatments, new drugs, etc.
The news is not good and I am pretty freaked out and so is my mom, but what is more problematic right now is my mom's attitude. She seems to be detaching from things she likes to do or being around people much, even family. She doesn't garden much anymore, she doesn't golf, see friends, go to sporting events, or even go out a whole lot. I am worried that she is not fired up or ready to fight this but rather, is letting it happen to her, like she is a passive bystander.
I think this forum is a perfect place to ask about you, and what we caretakers struggle with through this process. I don't have experience with anti-depressants but I am thinking about asking about them for my mom. She is becoming more detached and distant but she also hates that foggy brained feeling so it might be a struggle to find something that is just right for her. Right now she is taking Ativan at night to help her sleep (it's an anti-anxiety) but it makes her so sleepy she doesn't take it during the day.
Good luck and I hope it helps!!
I'm so sorry to hear it Pam. And thank you for the positive energy. It's strange - it feels like I was just sitting here on my sofa a few days ago writing that I just found out the devastating news that my mom has stage III cancer and now she has already completed 6 chemo txs and is getting scanned. And it is getting harder all the time. She is feeling worse all the time, eating less, getting more sluggish and sleepy, depressed, etc. And I am the primary caregiver because my brother and dad aren't stepping it up. It feels like my summer hasn't even started and with young kids and a school to run, I *need* a break. Even scheduling a simple social work appointment is a huge battle in my family because they don't want to talk about it. Yes Marion, scanxiety is clearly creeping in.
My mom has completed 6 chemo treatments and gets her first post chemo scan on Thursday. She is nervous and waffling between being wildly optimistic and completely pessimistic. She said to me today, "What if it didn't work?" and I didn't know what to say. I think the plan is to keep trying, right?
Pam, hopefully there will not be a next time but if anything like that happens again, feel free to give me a call! I am a teacher and home all summer and my mom is home and lonely a lot. Hoping for positive results!
Thanks PCL and Pamela. I assumed there would be a ton of different anti-nausea and appetite enhancing drugs to try before finding the right ones for her but maybe not. I might have to ask about Remeron because the Ativan is now starting to make her feel off balance and she fell and hit her head when she missed the chair as she was trying to sit down. Wow, who knew all the drug symptoms and combinations could be so tricky? You all did probably but I'm still new to this. July 13th will mark her 3 month diagnosis on April 13th and the learning curve is tremendous.
Topic: Anti-nausea and appetite enhancer? (5 replies, posted in Adverse Reactions & Side Effects)
This has been a rough couple weeks for my mom. Chemos #5 and #6 really beat her up. She is very tired. She is starting to show early signs of depression. She doesn't get up or go out really at all. She is not eating and is getting anxious when she even thinks about food. Details - she was taking Compazine and Marinol but didn't like the foggy and forgetful feeling they were giving her. She went off of the Marinol without telling anyone because she decided it was that drug that was making her feel that way. When I found out, I emailed the onc and he said it could have been either or both, So she went off of those and tried Zofran but last week was her worst week yet and she still did not eat at all. Then yesterday we asked the nurse at chemo about it all and she said to try Ativan to help her sleep, to help as an anti-anxiety and to help with nausea. Ok, she got some with her chemo and she slept well last night and felt better today but she always feels good on Tuesdays because of the Aloxi.
Soooo-Ativan at night but she doesn't want to feel foggy or sleepy during the day. No Marinol and docs said no Megace because it can cause blood clots, which she is already prone too.
This is my very detailed and long winded way of asking, which anti-nausea and appetite enhancing drugs have helped you? Which ones are we missing? because right now, we don't have an appetite enhancer and we don't even have a strategy for the day time.
I know, I know...but it feels like I should know this by now. For clarification, is a cycle of chemo each time or each clump? Like for my mom, the onc said she'll get 8-12 rounds of chemo. Her schedule is 2 weeks on and one week off. So is a round or cycle each and every time or is a round/cycle the 2 weeks on and one week off?
I just want to wrap my head around the timeline.
(Mom goes in for fourth dose of chemo tomorrow...round 2 or round 4?)
Thanks. I will check those websites out and pass along the food suggestions as well.
It is not just that she isn't finding anything that is appetizing, which is true. But my father is 76 (as of Saturday) and doesn't know how to turn an oven on. Seriously. So making comfort food, or any food at all is not really an option for him. And just the thought of buying food and preparing food and eating food is so un-appetizing for my mom that they are just buying fast food or food at restaurants every day which is cumulatively unhealthy.
My brother and sister-in-law live 2 miles from her and are already cooking for 3 boys (8, 12 and almost 16 year old sons) so maybe I should ask if they can drop off meals one night a week. And once school is out for me in another week, I will have more time to cook for her as well.
In the meantime, and frankly throughout the whole process so we can be sustainable, I will look at those websites and see if I can get some of her friends to pitch in more.
Tiffany, do you have friends or neighbors who have said, "Let me know what I can do to help" or "Just let me know if you need anything"? If so, I think this is an easy thing for people to do to help and when people say that they want to help, I believe they really mean it!
A friend said to me to ask the parents at my school (I am a teacher and director at a small school where my kids also go to school) if they could make my kids lunches for a couple weeks until school is out. So I asked and every Tuesday and Thursday I have different families packing lunches for my kids. It has been wonderfully helpful to have 1 less thing to have to do right now.
Just got home from round 3 of chemo with my mom and she is still not eating much (even with one week off of chemo) and when she does eat, my dad picks up food at restaurants. I know it is fatty and not so healthy so I want to organize a meal system for my mom. I know she has friends and I will get their emails from her but do any of you use a website or Google docs to organize meals? There are so many online it is mind boggling. I am looking for suggestions.
Lainy, I appreciate your response. It makes me think about how I define "strength". When my mom was raising me, I was taught this very powerful lesson that being strong meant not showing emotion or asking for help. In my house, the more independent I was, the stronger I was. So asking for help or support or showing big emotions were therefore signs of weakness. In my 20s and 30s, I made great friends and husband who helped teach me a different way of looking at emotions and strength. They helped me realize that asking for help is actually very strong. I just turned 40 in January and I now believe that expressing our full emotions is healthy and not to be feared. Feelings come and go so when I feel scared or mad or sad, then I should feel that fully, let those feelings come and trust that they will wash over me and be gone, making room for happiness. So I want to feel all of this fully but think I am stuck in denial because of my care-taking responsibilities.
Deb, thanks for the compliment. I am a certified English teacher and have written poetry and journaled for most of my life. So I appreciate your comment!