I totally forgot about Savi Seeds. I used to carry them in my store. Have you tried them?? The Karmalized ones are my fav. It’s crazy that this little seed has 17x more Omega 3′s per oz than Salmon! YEAH!! Plant powered!!
I can’t thank Vega enough for being such a super cool vegan company. They rock.
In other news I cried my face off today talking about my trouble with Tamoxifen with my group of ladies. It’s amazing to be with other woman who “get it”. I don’t feel so crazy … I’m not the only one struggling.
Full of gratitude today. Overflowing with love …
Love my ladies. Love for Vega. And I love the YWCA for doing this Encore Program.
I have completely disassociated and feel like I am floating above myself most of the time. Why? Because I’m in pain. The Tamoxifen is hurting me. My joints are aching. My bones are aching. I can’t seem to get relief no matter what I do.
And I’m only on 1/2 a dose. This is the medication they want me to take for 10 years.
Gerry says I’m like a helium balloon … he’s hanging on to the string and I’m floating away.
This is my 2nd time around trying Tamoxifen. This is a different brand of Tamox and we were hoping that I wouldn’t have any issues with it. I’m trying SO HARD to stay on this pill as it is part of the treatment recommended by my oncologist… but in 30 days my life has gotten really small.
I can’t walk on the beach anymore because I’m afraid my legs will give out. Walking up the stairs has become difficult. I spend more time in bed then I do out of bed.
Everything is uncomfortable. All things I normally do to self sooth – are gone. I can’t wrap myself in a big scarf (I love a big scarf) because I am having hot flashes. I can’t snuggle with Fergus because I hot flash. I can’t snuggle with Gerry because I hot flash. I can’t snuggle under covers… because I hot flash. I can’t even tolerate a hug for more then a few seconds before I hot flash.
I can’t go sit in a hot bath and relax (because I have lymphedema and have to avoid hot water). Because of my lymphedema I have to sleep with a pad that sits on my chest to help move the fluid away from my trunk. I attach it to my chest by wrapping a chest binder around me. Try and sleep with that on while you’re having hot flashes as you sleep and I dare you not to cry.
Speaking of Lymphedema I have to wear a compression sleeve on my right arm to help bring down the swelling. It’s like Spanx for my arm. Have you ever had a hot flash in Spanx?? It’s torture.
I can’t go on long walks (or even short walks) with the dog (because my knees are killing me). I haven’t been to Thetis Lake in forever … There is no way I could do it.
I haven’t had friends over or visited family in weeks. I’m canceling visits and spending more and more time in bed because sitting for too long hurts.
It hurts to stand. It hurts to sit. I hurt. I hurt. I hurt. Yesterday I stepped out of the car and almost fell because my knee gave out. WTF.
My brain is giving out too. It’s hard to have a conversation because I’m not in my body. I’m in that place you go when your body is in constant pain.
My teeth hurt. My gums are swollen. I have mouth sores. I feel like I’m getting the flu … but it never lets up.
The hot flashes are intense. The name Hot Flash should be changed to Hot Attack. First you feel woozy and uncomfortable. Like you’re in a dark basement hiding from someone who is trying to kill you. You have that feeling of fear deep inside you start to bubble up… Then the heat starts. It’s like holding a light bulb against your skin from the inside. Hot Flashes are a lot more uncomfortable on this medication then when I was on chemo. Those were more like “hot sweats”.
I tried to take Fergus for a walk around the block and I got to the end of the street and had a major panic attack. What if I can’t make it back? What if my leg gives out? We turned around and came home … Great. now I have agoraphobia?
I looked at the calendar and realized I have been on Tamox for 30 days and it feels like 30 years. I stopped taking it on Friday. Today is Tuesday and I already feel a little better. The fog is lifting and the pain is subsiding. What is this pill??
They keep telling me this pill can reduce my chance of cancer recurring … but at what cost? What is this pill doing to me?
Everyone I’ve met (through my cancer programs) who is on Tamox says the same thing. That they are in pain. That it’s uncomfortable … but that they do it anyway.
I think they are talking about a different kind of pain then I’m having. I have a high tolerance for pain … I’m a tough chick. Scrappy. I have my chest tattoo’d for fucks sakes. I can take pain. But this pain? It’s unbearable. Unrelenting. Feeling like this? I can’t do it.
I feel like a wuss.
Except that I’m NOT a wuss. I got through a mastectomy, chemo, radiation and it was REALLY FUCKING HARD but I got through it with smiles and laughter and friends and family and Fergus.
But this little white pill? It’s knocked me to my knees. Tamoxifen has drained my light. My normally glass half full is now empty.
We are seeing Dr.B on Wed to talk about what to do next …
Had my Power Port removed on Monday. I did ok … I knew I’d be stressed about it so I brought my Ativan with me.
I walked into the surgical room and told Dr.H that I took an Ativan because I was nervous.
He said “I’m nervous too so I took 5 Ativans. Are you ready to get this thing out?” Ha ha. What a joker that guy is …
Dr.H removed it using a local – so that meant I was awake for the whole thing. Ugh. It was creepy. I’ll spare you the details. I just did a lot of square breathing and let my mind wander to my happy place.
I asked Dr.H if I could keep my port and he was SO excited that I wanted to see it. He said “You’re just like a man. I’ve never had a woman ask to keep the port. It’s always men who ask. You’re just like a man…” I was like “Thank you?” and then I took my port and headed home for a long nap.
The next day I felt pretty good… in fact I felt so good that I took the dog to the park for a walk. Then I ran some errands at the drug store, went to Linens and Things and bought a juicer. Went to the grocery store and bought some veggies to make juice with and then I met up with the drywall guy (who is fixing our bathroom) and then met Gerry and our friend Roberto for dinner at the taco place down the street.
I woke up today feeling like shit. NO WONDER!! Look at all those things I did post-surgery? What is wrong with me?? Why can’t I sit still and just rest? I’m the worst patient. Ha ha.
The good news is that my body is so focused on healing this wound on my chest that my crushing joint pain seems to have subsided. Fingers crossed this means I’m getting used to the Tamox.
Here’s a little video I made of my port so you can get a closer look at it. I think it’s amazing … this little invention saved my veins from being battered by the chemo. I didn’t realize it was so BIG! It didn’t feel that big under my skin.
What should I do with it? Turn it into a ring? Or a necklace??
They make such a nice product!! Canadian made. #Vegan. Available at London Drugs! Woot!
I love it when a out and proud vegan product is available in a mainstream store!
All the products are really lush/rich. A little bit goes a loooong way. I especially love the Holy Grail body lotion. I used it after I shaved my legs and I was able to cream up my entire leg with one tiny pumps worth.
It’s been about 25 days since I started up with the Tamox and it’s not getting any easier.
You know that feeling right before you come down with the flu?
Where your whole body hurts and you feel like you’re wearing a heavy wet gorilla suit? That’s what I feel like every day.
Sore bones. Sore joints. Plus add in hot flashes and roller-coaster of out of control emotions and you can kind of understand how I’m feeling.
I went to see a councilor at the Cancer Center. I walked into her office and completely broke down. I think I sobbed through the whole conversation.
The first thing she did was give me a pad of paper and a pen and said “Let’s make a plan…” It was EXACTLY what I needed to do.
First thing. Be more gentle with myself. Right now. While the medication is so new in my system and because I’m having so many issues with side effects – I need to only do things that nourish/replenish me.
Second. Call my naturopath and see if there is anything he can suggest to help support my sore joints (and my emotional state) while my body gets used to taking the Tamox.
Third. Stop crying. These “Crazy Person” crying jags that I’m having are because of the chemicals in the Tamox. So I have to set a time of 15 minutes and limit my tears.
Plus she added some other “coping” suggestions that I already do like breathing exercises, meditation, etc etc for my anxiety.
I have always been a “glass half full” kind of girl but this Tamox makes me feel like I’m drowning. If things don’t start improving for me soon I don’t know if I can continue on this medication.
The worst part is that I’M ONLY ON 1/2 A DOSE!! I’m supposed to bump up to a full dose next week. I don’t think I can do it.
I was speaking to a woman in one of my support groups the other day. She’s about the same age as me and is on Tamox as well. We were commiserating about how miserable we are on this medication and she echoed my sentiment.
Neither of us were anticipating the Tamox to be this difficult. We both thought the Surgery/Chemo/Radiation was the hard part and that once we got through that … the pill would just be an inconvenience.
I was so uncomfortable this morning that I told Gerry I wasn’t going to take my pill anymore … but a few hours later … I somehow crawled out of bed, had a bath, brushed my teeth and choked down my dose of Tamox.
I’m going to give myself 2 more weeks (6 weeks total) to “get used” to this medication. If I don’t see a change in how I feel … I’m going to talk to my oncologist again about what I can do. I feel like such a wuss.
Thank goodness for my Magical Hummingbird.
She sits outside my bedroom window every day and chirps at me through the window.
My heart skips a beat every-time I see her. Isn’t it crazy that she sits on the same branch every single day!?
I swear she follows me around the block when I walk the dog. I’m so lucky to have a Magical Hummingbird.
The Tamox has not been kind. Nausea. Hot Flashes. Weird puke-burps. No appetite. And of course the worst part for me is the joint pain. The pain went from zero to 60 and it caught me off guard. And I’m only on a 10mg dose. I’m supposed to be on 20mg!!
Despite me feeling crappy I was determined to go see my family this weekend so we hopped the ferry and it was really great being able to see my parents and Gerry’s folks …
But the entire trip I kept thinking “Is this my life now? To be so uncomfortable that I can’t sit for too long and also so uncomfortable that I can stand for too long either?” By the time we got home I was exhausted. Thank goodness I brought my luck-dragon with me for comfort and cuddles.
Speaking of Fergus … I would like to get him certified as a “PTSD” dog but I can’t seem to find any good solid info (yes I’ve googled) about PTSD Service Dogs for Canada in particular BC. Anyone out there have any info?
Speaking of PTSD the fear I have about the Tamox is intense. I’ve been crying just about every night about the pain. Gerry rubs my back while I sit and sob. This whole year has been about learning to let it go so instead of trying to be stoic – I just let it out. It’s not cute but it’s effective.
These Tamox tears are so intense. Gerry told me I was “darker” then he’s ever seen me. It’s much more difficult to recover from Tamox tears … so I’ve made an appointment with a therapist at the Cancer Center. I have a regular therapist but I want to talk to this particular woman at the Cancer Center because she’s my favourite therapist who does the Guided Meditation.
The therapists all take turns running the meditation but this woman is particularly creative. I dig her outlook … so since she deals with cancer patients every day, I think she might have some new insight for me. Fingers crossed.
During one of my nightly melt-downs I had an epiphany. I realized I wasn’t taking everything the Naturopath suggested for joint pain so I went and looked at the sheet of his suggestions for supplements that won’t interfere with the tamoxifen and I was right. I had totally forgotten to pick them up after my appointment with him.
He had suggested Curcumin for joint pain as well as Glucosamine. I think I hadn’t bothered with the Glucosamine because I knew it was made with shellfish so I did a quick Google search found a vegan friendly Glucosamine and the next day I ran to the vitamin store so I could get started.
It’s only been 5 days since I started with both … and I already feel like I’m doing better. I still have achey knees at the end of the night but I don’t feel like jumping off a bridge. So I am now feeling a teeny tiny bit hopeful that I can navigate my way through the Tamox with the support of the supplements.
So let’s all say a tiny “yay”. I’m not ready for a big YAY yet.
In other news – I went to see Carol Armstrong who had come to my YWCA Encore class to talk to us about lymphedema. I am SO THANKFUL that she does this kind of outreach because my arm has been bugging me for a while.
I also want to say thank you to all of you out there in internet land who sent me messages to be mindful about Lymphedema.
I’ve asked my Surgeon, my Oncologist and my Radiologist to look at my chest wall/arm and they gave me a few pokes and told me I was fine. They all said “You’ve only had 3 nodes removed so don’t worry about it”.
My arm has been weak and feeling weird ever since I finished radiation at the end of Dec – but I kept waiting for it to get better. First I couldn’t really use my arm that much because of the radiation burn. Then I thought it was stiff because I had favoured it so much. Then I thought it was stiff/heavy feeling because I had started the Encore program and I was exercising it too much.
Anyway … I had a funny feeling it was something else … so I booked an appointment with Carol for an assessment and guess what. I have edema. Which is swelling in both my arm and my trunk area and some truncal rigidity where I had the mastectomy. It’s early stages and Carol feels that we can get things normal-ish again but it’s going to take some time. She’ll be doing lymph drainage massage and working on breaking down the scar tissue …
So #1. I’m pissed that none of the doctors knew to measure my right and left arm for comparison.
#2. There is no support at the Cancer Center for Edema/lymphedema except for the library. They give you an oncologist. They give you a radioligist. They give you a nurse hotline. They give you mental support with therapy. Where is the lymphedema expert?
#3. If Carol had not done outreach at the Y. And I had listened to the doctors instead of my gut I would be walking around thinking my arm was fine and it would be getting worse.
I feel like I SHOULDN’T HAVE TO DO MY OWN DIAGNOSIS. That they should know what to look for. Ugh. So now I have to get fitted for a compression arm sleeve …
I went to the Rexall located on Nanaimo Street. I love that store. The staff there are so helpful and anytime I’ve gone in there with questions or looking for something medical they go out of their way to help.
The woman who fitted me for my sleeve made me feel so comfortable and kept assuring me that I was going to be fine and that the sleeve would make me feel much better. Then she said “Do you want me to order you a black one? You look like someone who likes to wear black.”
Ha ha. How did she know??
I was talking to Dr.B on the phone the other night about how scared shitless I am not to take this Tamox. I told her that I hadn’t anticipated all the side effects from after cancer treatment.
I was so focused on the tumor and getting through the surgery then the chemo/radiation. I didn’t anticipate the Tamox to be just as difficult. I didn’t expect to have issues with my lymphatic system. I didn’t expect to be as weak as a baby. I didn’t think I would have no appetite and not enjoy food anymore. I didn’t expect to have such deep PTSD and anxiety from all the trauma of cancer treatment.
So fingers crossed this Curcumin and vegan Glucosamine keep doing what they’re doing to help offset the Tamox joint pain and while we’re at it let’s all take a deep breath and ask the universe to cut me a little bit of slack.
That’s not too much to ask for… is it?
Ok… new day. New attitude. Woke up early and went to my Encore Program …
There is nothing better than playing in the water with other breast cancer patients to make you feel like you’re not the only genetic dud in the world.
This program is so great because not only do you do Aquafit but once we’re done we get dressed and go to the yoga room and try different exercises.
Last week was BellyFit. The week before former patients came and shared their breast reconstruction. This week a woman came in and did Restorative Yoga with us. And every visit we also have a circle of chairs and go around the room and talk.
Came home and konked out on the couch and had the deepest nap. Today feels good.
Yesterday I dropped in on the Cancer Center Pharmacy to talk about my side-effects. It’s only been 5 days but … here’s what’s happening. I feel caffeinated. My heart is pounding and because of that I feel light-headed and spacy.
I get gut-rot as soon as I take my pill. I have nausea during the day and then last night I had EXTREME hunger. I could not get satiated. It was so weird. I’m also having about 8x hot-flashes a day. UGH. So I looked up Hot Flashes/Anxiety on The Google and look what I found:
The outward signs of a hot flash — sweating and pink or reddened skin — tell the world that a woman’s estrogen production is dwindling. Heart palpitations and feelings of anxiety, tension, or a sense of dread also may accompany hot flashes; some women say they feel agitated or unsettled right before a hot flash occurs. Women experience hot flashes differently. Some feel warm; others complain of burning up. A lot of women feel chills afterward. Hot flashes that occur during sleep, called night sweats, may disrupt sleep, causing fatigue and mood changes.
Ummmm… hello. That’s me. So I’m trying to be mindful that when I start to hot-flash to pay attention to what else is going on with my body.
Also now that I have a clear head … I recognize that my meltdown the other night was a full blown panic attack because I feel totally out of control with the Tamox.
But all these side effects might not be from the hot flashes or the PTSD/Anxiety. The pharmacist said that my heart racing could be a side effect from the pill and told me I could stop if I wanted and we can have a meeting on Monday with Dr B.
I decided I’m going to tough it out through the weekend and see how it goes.
In other news …. A friend of mine from the Encore class gave me this EMDR session for pain to try and it helped clear away some of the doom I was feeling. If you try EMDR make sure you use headphones as the tapping sounds go from ear to ear.
So lots of self-care going on over here. Don’t you worry about me.
Speaking of self-care … Gerry tattoo’d me yesterday.
It sounds crazy but getting tattoo’d is so therapeutic for me. The second the needle hits your skin you are awake. It’s like a cold glass of water in your face but with needles. Ha ha.
Even though the tattoo is ever so small … it made me feel so much better.
March 4th of last year I went for a mammogram that turned into a needle biopsy that found my breast cancer tumor.
Gerry and I took this photo while we were waiting … we had no idea our world was about to be turned upside down.
Cancer-versarys are weird. I’m so thankful we found the tumor. That we had it removed. Thankful I’m alive. But also so mad.
Mad that I had to have such a body-altering surgery. That chemo/radiation made more more sick than I’ve ever been in my life. Mad that chemo/radiation WRECKED me physically and mentally.
I’m thankful that the nausea has passed but I’m pissed that I have zero interest in food. I get no joy from eating anymore.
Then I think about my friends sister who started her cancer treatment around the same time I did. She passed away this week. It’s heartbreaking… I’m lucky to be alive. I should stop complaining and just be grateful.
If I had just done my mastectomy and no other treatment… there would be a 50/50 chance of recurrence. That’s 1 in 2. But because I did chemo/radiation that brings my numbers down to 35/65 chance of recurrence. That’s 1 in 3. And if I add Tamoxifen to the mix: that brings me down to 20/80 chance of recurrence. That’s 1 in 5.
So it’s kind of a no-brainer. Except that when I took the Tamox – I was in agony and it would be impossible to function like that.
So Dr. B suggested we switch brands. I first took Tamox (TEV) and this time I am taking Tamox (APO). She said that she’s seen woman take one brand and be fine and then they switch to another brand (for whatever reason) and they can’t handle it. So I agreed to go back on Tamox but we are starting slow. I am taking 10mg (instead of 20mg) a day for a month and we are going to see how I do.
She said even a little Tamox is better than no Tamox.
Gerry and I got home from the appointment and I totally melted down. Just the thought of going back on Tamox triggered something so dark and scary inside me. I am so afraid of the pain/joint flare ups I had the first time I took it. Ugh. It gives me so much anxiety.
In the middle of my melt-down I actually told Gerry he should leave me because I’m a genetic dud and he deserves a better wife. Oh man. I was so low. I sobbed my face off for about an hour. I couldn’t stop crying … So Gerry shoved an Ativan in my mouth and 2 minutes later I was fine.
I kind of love Ativan.
When I took my first dose of Tamox I got immediate gut-rot (like I did with the other brand) and I could feel my body panic. It triggered so much anxiety that I crawled into bed and spent the entire day there. I lay in the dark with Fergus curled up beside me … Ugh.
Then I looked at my calendar and realized that it was the anniversary of the day I had my needle biopsy. That was the day the doctor held my hand after he punctured my breast and said “It’s definitely something. I wish you lots of luck.” That horrible fucked up day is stuck in every cell of my body. Of course I am feeling all these feelings today. This was the day when everything changed. I am full of so much grief.
This morning Gerry said to me “You can try taking this pill for 1 day. 2 days. 2 weeks. You get to decide.” but all I can think is that if I don’t take this pill … I’m going to die. That is so much weird crazy pressure to put on myself. It’s not fair to do that.
So today when I took my Tamox I looked at it and said “Go to work little friend. Do your job.” and while my Tamox is making sure that my body doesn’t make anymore cancer … my job is to not get so hyped up and anxious that this is going to be a repeat of last time.
I took my pill yesterday and had gut-rot again (yes I’m taking it with food) but instead of obsessing about it I took Fergus to the beach for a walk. While I was at the beach I got a call from my surgeon about removing my port.
Fantastic! That’s a step forward right? …It’s a reason to celebrate but instead I’m filled with more anxiety.
They remove it with a “local” and a small incision and then they pull it out. WHAT THE WHAT?! Isn’t it connected to my jugular??
The nurse assured me it’s easier to remove then put in. I told her I would be taking ALL of the Ativan. She said that would be fine.
March 4th 2013 was the needle biopsy. March 6th was confirmation of my cancer. March 14 I shared my bad news with the world.
March came in like a lion and never left…
All year the nurses have been telling me that cancer is a marathon not a sprint and I’ve been trying to pace myself but today I am officially out of steam.