Starting Radiation August 2021 - Anyone else?
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Oh Michele, your "harbor seal" description ... LOL. How wonderful that you will have a new position for the boosts. I'll trade you the new position for my awkward samba pose. I can't trade you my Depends tailbone pad though, because I lost it! It fell out of my pants somewhere last week. Makes me laugh whenever I'm heading into the dressing room area. I keep looking down everywhere like I'm going to see it lying there on the floor 5 days later, like they don't have a cleaning crew. I guess I will just have to cut out another swatch and keep better tabs on it next time.
Jen, did they get you scheduled yet for the lymphedema specialist? While you're waiting, they need to get you that compression sleeve prescription right away since you had symptoms. Either your MO or your SO needs to send a prescription for the compression sleeve to the local supply store- usually in the same hospital where you had surgery, or the place that specializes in wigs will also sell compression sleeves. The supply store should get you in right away if you mention that you have had symptoms of lymphedema and need it addressed right away. Upsets me that you have to wait. I went to PT today (chose Mondays) and my arm has been so tight. I have cording (like a guitar string running down the arm) for the past few weeks that has'nt gone away yet but my PT is massaging it and working on it. Ugh-
Jasmine, that video looks great!! I'm going to check it out in the morning. Thank you!How is everyone else doing?
Love and blessings,
Esther
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Thanks Michele for all the great info on the prone board position. I have to say I've been thinking the same thing about the sexy positioning of my boob
! Believe it or not I have NEVER had a massage, so this will be some great introduction to the massage table. You gotta laugh or you cry right! Thanks also for the tip on distracting the technicians with a joke so when I grunt and groan getting on the table they won't even notice !!I'm so glad I found this group, because last week I was feeling way too sorry for myself and you all have made me feel less alone. My husband is supportive, as are my daughters, but I hate burdening them with all my anxiety. I think that's a thing we all do as women, right? We try to be stoic and strong so we don't upset anyone else. Take care everyone and have a lovely Tuesday!
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Esther - I am laughing so hard at your lost depends cushion! Would a super thick maxi pad help your tailbone? At least it has sticky tape
Jasmine - I agree that the stoic and strong thing is something we inherently do as women. I have felt the same way about not wanting to burden anyone, so I have really felt better here where I feel not so alone. And, I think you need to treat yourself to a massage as soon as you're able!! Just ask for a gentle relaxing massage, I tried deep-tissue once and felt like I'd been hit by a truck, no thank you to that!!
Today at 3pm will be my 10th session - Which means I am halfway through this!
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Esther01 - You are KILLING me with the Depends tailbone pad. OMG that is WAY too hilarious! Seriously!??!?! And you keep looking around for it as if it would still be there?!?!?! LOLOLOLO LMAO! I can hardly breath that is one of the funniest things I've read in AGES. You are too much!
And Jasmine2717 - Yes, like you, I try not to overdo it with my kids and my husband. Although I wouldn't describe myself as stoic, LOL. I'm quite verbal and expressive (as you can probably tell here ) but still, it is too much for even my husband at times. And so it does help me, as well, to have you all here to vent with and to lean on and to laugh with. It helps A LOT more than I could have guessed it would. In fact, I have found myself wondering about how you're all doing - as I go through my days. And I've been thinking of you all so much. I just really am grateful you are all here.
My 12 year old son is currently in the room with me so I cannot continue. He is using my phone to do a search for items for his hermit crab's home. He's not permitted to do unsupervised web searches - his phone is mostly a brick as a result of our parental controls. LOL. We're quite strict. Anyway, no privacy right now so I have to run. I love/adore/cherish this boy - he's my moon and stars. But after 1.5 years at home due to covid, I think he and I are both looking forward to school starting - maybe each for our own different reasons - but still! LOL
Love and more later,
Jen
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I'm so glad the little pad falling out of my pants brought laughter to our sweet group. I should have put my name on it. They could have returned it from Lost and Found. Haha!
Jen, that was precious about your son. I don't know what furniture a hermit crab needs in his home, but it probably includes a little flat-screen tv and a tiny kitchen stove with oven mitts for entertaining friends. Oh, wait, he's a hermit. Maybe they prefer to be left alone? What a fun project. I think that's so wise of you on the parental controls these days. You sound like wonderful parents.
Congratulations Michele on being halfway through! I'm so happy for you. I hope the second half flies by. I have to admit, each session does seem to go much faster as we go along.
Jasmine, I haven't ever had a massage either. Oh, wait, I had one a long time ago. The masseuse kept making me talk the whole time and it wasn't the least bit relaxing, so I'm not sure it counts. I read that massage therapy is very helpful for us as breast cancer patients as we go through treatment. It can help reduce pain and side effects. If I do it, I'm definitely not choosing the deep tissue massage you had, Michele. That was so funny, how can that be relaxing? LOL I would rather run out to my car and drive away, even if they already had my money.
I agree with you all on appearing stoic and strong. I have my moments, too. It does seem that our strength uplifts our families, and I'm blessed to see that. But we need comforting, too. We need for someone else to understand how very difficult this all is, how much we are enduring and how scary it can be. I'm glad we can comfort and support each other. I have no doubt we will get through this.
How long are your drives going to be? Mine is 30 minutes but for some reason it doesn't seem very long. I've been singing along to the three worship stations we have here in southern CA but why do they keep playing the same ten songs? Ahhhhhhh!!! I can't take it anymore. I'm now lugging old CDs back into my car and I accidentally loaded one with Gene Autry singing old Christmas songs. In August.
Ok, off to lotion up. Michele, I gave up the greasy greasy for just calendula cream and radiaplex. I couldn't take what it was doing to my nightgown and sheets. I hope I'm putting on enough. You know how they say to start taking care of our skin and lotioning before we start radiation? The skin has a healthier baseline starting point that way. Wish I had known that in advance. I have a farmers tan and should have been wearing sunblock all summer.
Night all! Sleep well, you are not alone!
Love and blessings,
Esther
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I love getting massages! Back in Nov. 2020 I started experiencing unbearable pain; MO thought it was side effects of the ACT & Carbo treatment I had over the summer, however I had just started Xeloda. Regardless, the pain in my whole body was so bad that I could not finish my Xeloda treatment; I was convinced Xeloda was to blame, but I see how it could be delayed SE's from chemo. I couldn't reach to even tuck a shirt into the back of my pants, it hurt so much. I was so depressed, it was scary. I started PT for cording and to help with ROM. After a couple months I had plateaued. My MO suggested I try massages at the cancer clinic to see if it helped. I went once a week and four sessions in I was able to reach around and touch my back and my ROM had increased significantly. I have gone almost every week since. I am currently working with a group of oncology nurses and other bc patients to help advocate for massage therapy for bc patients as there are added benefits.
I highly recommend getting one! Even if it's for relaxation purposes.
Esther - loving your creativity...a Depends for the tail bone LOL LOL!!! And then you lost it?! Even funnier! My RO showed me am memory foam type wedge that's used to conform to my body to make it more comfortable. Before being rediagnosed I spent my mornings at the pool and am very tan, but due to still healing from my exchange surgery, my "girls" were covered and are their natural color.
I luckily only have to drive 15 minutes to my appointments (that is, once they begin).
I put on a really good game face when speaking with others about my bc. Soo many praise my positive outlook, but there are so many times I think to myself "if they only knew that deep inside I'm just a mess." The way I look at it is, if I let the world see me a mess I'll get the pity that I don't want and will make me feel worse or risk the possibility of more people alienating me as they don't know how to handle it.
I'm very nervous about rads, especially with implants. I started PT last week and go today with the hopes of prepping me for rads and have some minimal effects on the implants and maybe prevent capsulitis and avoiding additional surgeries than what's already on the calendar. I have no idea what to expect.
But like all of you, I'm staying positive.0 -
Esther - I'm in So Cal as well. I currently drive 30 minutes each way to the UCSD Moore's Cancer Center in La Jolla. My fiancé is my chauffer and on the way home we usually take a more scenic route along the coast line so it's not too bad. We've also been listening to a book on Audible which has been really fun because the plot gives us something to comment on and talk about and takes our mind off of the drive and the treatment. Today will be your 10th treatment, right? How are you feeling? I've been a little pink but last night I actually felt a little bit of a sunburn sting. Calendula helped. Today I accidentally bumped the oven door with the back of my hand while taking something out and that little burn spot stings 100x worse than my breast. It's silly but it gave me perspective. I was starting to stress over feeling something, and now I realize that on the scale it's really nothing.
Oh, and due to an overcast day and bottomless mimosas back in May, I am also rocking the farmer tan! Twinsies! Haha
Ivy, I'm like you - Cool as a cucumber (On the outside!). ((Hugs)) I'm hoping that everything will be super easy and just fine with the implants. Did they tell tell you how many sessions you'll need?
Jen -- I think he definitely needs a little oven with oven mitts! Even hermits need cookies.
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Mich21 - I'll be having 25 sessions.
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Esther01....OMG a tiny stove and a flat screen tv for the hermit crab! LOL!!!! And Mich21 omg cookies! You two are hilarious!
And being forced to chat during a massage - no thanks! I had some when I was in my 20's - so long ago it's almost like it never happened.
I just got off the phone a few hours ago from the Lymphedema PT people and they told me they'll be giving me special kinds of massages. I kind of freaked because I'm so sore and sensitive and I know they'll know what they're doing but yikes! I used to get deep tissue massages but now I'm old and cranky and sore and scared! LOL. No thanks. Gentle please. And NO CHATTING! LOL! And Ivy09 that's SO amazing that you now go every week and have seen such progress and now you advocate for massage therapy for bc patients? I really ought to look more deeply into this. Thank you for sharing that. That's awesome that you do that.
I'll be driving 25 minutes or so each way. I love the idea of Esther singing along to music - you're so funny about the same 10 songs. OMG. why not xmas songs in august! HA! I listen to podcasts. I have some favorites. One is called "Memory Palace" and it's always a short, sweet story written by the guy who narrates. You randomly pick any of the zillions of podcasts - in no particular order - and you can't read the summary of the story because it never captures what it's like to really hear the story. I've found myself weeping at times - sometimes they're 8 minutes and sometimes they're 18 minutes. He's a beautiful writer and story teller. Captures a small tiny slice of someone's life or a piece of history, etc. I just love that. Also: The Moth podcast. It is also story telling (pattern, anyone? LOL). The Moth is where a person stands on stage and tells a story about their life - for 10 minutes. Each story is told quickly and they're often quite funny, touching, sad, tragic - often provacative and with a moral to the story. Always personal. I love listening to people tell their stories. Anyway, those are 2 podcasts - you can randomly pick any of them without reading summaries and find you'll enjoy or at least be touched or angry or inspired or whatever. Of course, recently my family watched a live broadcast of The Moth - on the internet - we were so excited because Lin Manuel Miranda was going to do a story from his life (we loved Hamilton) but there were others on stage too. We had to turn one off had because there we were, with me bald and going through chemo, and one guy was telling the truly heart wrenching story of his wife having breast cancer...nope! None of us could handle it! LOL. The others turned out to be material that was wayyyy too mature for my kids and I was lilke "um, nope!" and we had to wait for Miranda to do his story and skip most of the others. Miranda's was awesome and clean and not too triggering LOL. Anyway, omg I'm so chatty! Sorry!
Michele - you're half way through! Amazing!!!
I am having a hard time keeping track of where everyone is in the process. I wish we had some spot where we could all put our names and where we are in the process - so we could all cheer one another on with more clarity - like spectators in a marathon or something.
Ivy09 - makes perfect sense to me that you're nervous about rads.It's hard to stay positive when things are looming and feel daunting and it's so hard to know what to expect.. I SO hope that things go smoothly for you and that you are able to avoid further surgeries, etc. But it is reasonable - as far as I'm concerned - that you're scared and that it's hard to stay positive. We don't have to stay positive all of the time. We can feel our real feelings and accept that it sucks royally - to be in this situation. It just is so scary, isn't it?
And "if only they knew " - I so know what you mean. I'm noticing now that even some of my closest people - people who are typically so loving - are starting to get worn out and tired of the seeming endlessness of my situation. Believe me, I'm worn out by it too - but if I don't put on my "game face" for certain friends these days (not all, but some), I see that they're struggling to stay present, struggling to hang in there with me. I mean, here's the thing: this is a long haul. Cancer treatments don't just end after surgery or radiation. This shit goes on and on! At least for many of us, sadly. For me, for sure. I mean, after each chapter, I have had people who want to "celebrate" and say "YAY!" - and it's not that I don't feel glad that each chapter is ending, it's just that I'm acutely aware that nothing ends for me - just more treatments, tests and surgeries and check ups into the future as I see it. I'm trying to learn how to adjust to that new reality - it's rough! And my kids and husband have to join me and adjust too, somehow. But outside of them - no one else has to adjust. They just have to find ways to cope with knowing that their friend or cousin or whatever - someone they care about - is going through this hard thing and it won't just go away and be over. And many times people don't cope well and are deeply uncomfortable if I don't show my "positive attitude." I've never experienced anything quite like this. I've found myself thinking "I simply cannot take care of her and make it ok for her right now."
We missed a super duper important wedding due to my surgeries and although the bride and groom and the whole family showed compassion and understanding back then, when I was going through chemo weeks after my 2nd surgery, they all wanted to come visit or have us visit them and I was like "NOPE" and they were hurt. I mean, they were REALLY hurt! I was like - um, really? This is not about you and how much we love you. I get that they love us, and that is so wonderful, but I'm going through cancer treatment, and I am simply not in a place to host - even people I love and adore - or travel and be social, etc.They see themselves as "like family" so they think they should be the exception. And they are like family - but I just cannot do it. I cannot make exceptions right now. I'll tell you what. If anyone I love or care about goes through something like this down the road (God Forbid, but still) they won't have to put on their "game face" with me. That's for sure. I won't need them to host me or visit me or pretend to feel good or to be positive or act like they feel less bad. It's like, on top of enduring life threatening illness and nightmarish treatments, we have to work to make others feel ok about how we're doing. Ok - onward from that lovely topic! LOL Sorry for going on and on.
Mich21 - What book are you listening to? And I like your perspective about burning your hand (ouch!!!!) on the oven. That makes sense. That's so nice that you take a scenic drive and you're with your fiancé. I love that. I'm glad you have someone with you who loves you.
You guys are so funny about the farmer tan!
Ok - can you tell that my son is out of the house right now?! LOL. When he's around, I have to type quickly or come back later. His Dad is with him at a baseball game right now - so I have some space to think, reflect, write, etc. My 14 year old daughter had a long day at writing camp and field hockey practice, so she's allowed to play video games for a couple of hours...the house is quiet! OMG!
Love to all.
Jen
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Jen - We are listening to a book called the Wanderers by Chuck Wendig - Here’s a synopsis: A decadent rock star. A deeply religious radio host. A disgraced scientist. And a teenage girl who may be the world's last hope. From the mind of Chuck Wendig comes an astonishing tapestry of humanity that Harlan Coben calls "a suspenseful, twisty, satisfying, surprising, thought-provoking epic." ... Google Books
It’s an overcast day, but this is my view of the coast on the drive home:
Ivy - I’m doing 20 treatments, so are close in that regard. I tend to go a little Pollyanna in my “Everything will be okay” thinking otherwise I will worry myself to death. I don’t have implants & I know that everyone is different, but I can say that I am so far doing well. And I was terrified of the whole process. ((Hugs))
Side note- Speaking of people’s reactions. My fiancé’s late wife died of cancer (Melanoma) by the time she was diagnosed they gave her months to live. So, when I was diagnosed almost everyone was worried about My fiancé. “Poor Richard” they’d say & I found myself comforting him too & reassuring him that I’d be okay. I felt like I needed to be stronger and tougher, a better fighter. It. Sucked! Of course I hate that he’s going through it again, but poor Michele needed the love and care!! I was a certified trauma counselor- So I tend to go into auto-pilot mode and just deal with things. I really appreciate this place where I can just be me. Thank you all.
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Why don't we add where we are in our # of sessions (or pre-radiation waiting) to our posts?
I'll start...#10 of 33 today
You gals are great. I really enjoy reading your updates. And Jen, your posts are never too long! They are rich with humor, truth and wisdom. So many deep nuggets that we can all identify with, quite a bit!
Yes, it was my Day 10! Thanks Michele for remembering, you have an awesome memory. No issues thus far. No redness or itching. I am wondering about the X they marked in pen on my chest because it's covered in tape and I can't lotion it. I asked them to switch the direction of the tape so I could alternate lotion on the sides better, but I am wondering how long that X area of skin will hold up. I love that your fiance chauffeurs you and that you have quality time together! I know La Jolla well and it can be trafficky even if you don't go down into the Village. (I lived in SD for 15 years and loved it there). I also love your Audiobook idea and Jen's Moth podcasts. I don't have to sing all the time
Listening might be more relaxing!Re: DIBH (deep inspiration breath hold) for left sided rads... I experimented with my breathing today, and I'm glad I did. Every day they put a camera on my stomach and have me breathe for a few minutes before they start and give me the actual radiation. The camera measures your natural breaths. Sometimes we breathe shallowly without realizing it! I noticed a few days ago that they were telling me to "Breathe in" and "HOLD" when it didn't seem like a very deep breath yet, and you want it to be a deep breath, because you want your heart as much out of the way as possible. I must have been breathing shallowly with the camera before they started. So, today I tested that theory. As soon as they taped the camera on me, I did deep diaphragmatic breathing and kept it up until they were ready to turn on the radiation. Sure enough, today when he said, "Breathe in," and "HOLD," my heart was even further out of the way for a nice deep breath. Anyway, just wanted to share that. It might be perfectly safe to take a smaller breath, but I'd rather have my heart as far away as possible from those rads.
Ivy, your experience with the cording and ROM massage made me feel a lot better about my tightness and cording. I didn't have it until a month after surgery. Jen, the massage is not painful. The PT massages down your arm toward the armpit. I like the way it feels. I hope they get you a compression sleeve right away. Hopefully they will do that the first day.
I keep forgetting to tell you, here's a good post on systemic enzymes. I have taken them since diagnosis thanks to my brainy doctor. Never heard of them before bc. They break down the scar tissue/fibrin we get from surgery and radiation, they reduce inflammation caused by rads, ease joint pain, help circulation, strengthen our immune system, and on and on. None of my oncologists had any problem with them because they are natural to the body. I know... more pills... But, here's all they do: https://drjockers.com/systemic-enzymes-cancer/ I like the illustrations... and below is the one my MD recommends most to her patients.
Ok, that's it for me tonight. I hope you all mention your progress through radiation so we can cheer each other on!
Love,
Esther
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FYI Just like Michi21, my ex reached out after not having contact with him for a long time. I never thought about him being able to find these conversations if he searched the internet, so I, too, changed my username.
Esther thanks for sharing all the helpful information you've researched or been given to you. I really want to go into this prepared and hopefully minimize any discomfort.
I cannot stress how much the cording and especially the massages have helped me. They are not painful at all, it's very relaxing. Maybe some pinching feeling during cording because the pulling of the skin, but it's not terrible. Trust me, if I can handle it, anyone can. My cancer side is still numb, but during yesterday's cording I started feeling the nerves reacting, that gives me hope hat I will eventually get most of the feeling back in my armpit.
Like I said above I put a good game face for everyone, but my son is constantly calling me out on it. I'm trying not to worry him. He took the brunt of it all when I was diagnosed last year and because of covid it was that much more difficult for him, I believe. He has a full plate, working and starting his last year in college next week. He's studying EMT/Paramedic and Firefighting so he gets it. However, I want him to live and have fun, he deserves it. I try to have my emotional breakdowns at the doctor's visits or in the shower. I'm a worrier to, but by turning that positive attitude it I feel like I practice what I preach. We're entitled too having our moments. For me, most days are good days. Having you all to turn to and know your experiences has really helped me feel a little better about going into rads. So, from the bottom of my heart, thank you for sharing.
So on a completely different topic.... does anyone know if it'd be ok to dye my hair? I'm one year out (yesterday) from last IV chemo and I really want to dye my hair as it grew back much darker.
Ivy
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Morning Ivy,
It happened to you too! Why do ex'es have such rotten timing? I guess that's one reason why they're our ex'es.
Are you having once weekly PT massages or twice weekly? I am thinking of asking for twice weekly if it might resolve it sooner.
I think of you all during the day and always hope all is going well at your stage of treatment. Your son sounds like a remarkable young man. I'm glad you have that support.
The game face is tough. The more I am learning though about how cancer operates (by fermenting glucose, not by being held hostage to my genetic mutation) the more hope is rising in my heart daily. The Metabolic approach to cancer thread on here has more on that - what we can add to our treatments to make them more effective and build our immune systems to handle treatment better and reduce recurrence risk). My oncologists didn't have a clue about any of that, but to be fair, it wasn't in their training, and none of them has a biochemistry degree. Thankfully, my MD does, with thousands of cancer patients like me flocking to her.
Yes! I had my hair dyed a few days before starting radiation. During the pandemic shutdowns, my hair stylist didn't trust me to self-apply bleach at home (haha, she's right) so she kept dropping off a gentle color for me at my door that doesn't have bleach or as harsh chemicals. I like it so much now that I had her put it on me a few days before starting radiation. It really lifted my spirits.
Have a great day today! I'm off to # 11.
Love and blessings,
Esther
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Esther - Yes, my ex was, and still is a piece of work! I did not bring up my bc, but I ran into his brother not too long ago. My hair is what gave it away, I used to have long, time to the middle of my back, super curly, thick, blonde, beautiful hair. His brother must have said something. Since we have so many friends in common all he had to do was ask around. However, we live in the same city and this is my second dx in just over a year. So I don't know what the intention behind the call was as I was short, but friendly with him. I will give him some credit, his sister recently passed away after a very long battle with bc and so he said he was thinking of me. Of course, all the other bs came after..."I was really happy with you", "I really wanted things to work out for us", "I think about you all the time", blah, blah, blah. I honestly have too much on plate right now to even think about him.
My son truly is awesome, my angel throughout all of this.
I have PT once a week and a massage once a week. They work so well with each other. Sometimes I can go without the PT and do every other week so long I continue doing my daily stretches at home, but because I know that once I get cleared for rads on the 25th it's going to be go, go go beginning the 27th, I'm making sure to get all the PT I can prior to.
Thanks for letting me know that I can dye my hair. Going to call and see if my beautician (do they still use that word, lol?) can fit me in, or maybe mix something up for. I really could use he pick me up.
Enjoy your music on the drive in!!
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Esther by now you're done with #11? YAY! And Ivy, I love your description of your hair "super curly, thick, blonde, beautiful" - I love that. My hair was the same way but brown (well, brownish grayish? LOL). The thing is: that whole cliche of you really don't know what you have til it's gone - it was true for me and my hair.
I only started really loving it and being sad about losing it - once it was going to go away. I've learned so much about how mean I have been to myself all my life - about my body and hair etc. Now that I've gone through this frightening and horrifying experience, I look at photos of myself from before and think "she was beautiful. Her hair was beautiful. What was I thinking!?" I think - just seeing images of myself looking healthy and taking my health for granted - I yearn for those days. Of course, when the photos were taken I was thinking how awful I looked, etc. I was raised by a very messed up Mom who really messed up my self-image. Here I am in my 50's starting to see it all with such clarity. I'll be happy with WHATEVER hair comes back to me! LOL. I have promised myself and God that I will be grateful and appreciate the hair, whatever it looks like! LOL. And I'll do everything I can to care for my body and not be so angry at it for not being the perfect body I was told I should have. Oh the many levels of learning and awakenings I've experienced already through out this process. But if you want to dye your hair, I say go for it! Anything fun that lifts our spirits, right? As long as it's safe, which it seems to be!I just got back from mapping and tattooing.
I hated it. No matter how much I mentally prepared, I was scared! When I entered the room and saw the machine and the spot where they wanted me to lay down, I was suddenly full of terror. The two sweet women there saw the look in my eyes (was wearing a mask, of course) and quickly said "it's nothing to be afraid of! Chemo is worse!" LOL. I explained to them that I'm not rational - I'm just worn out and sick of doctors and machines and so afraid of radiation even though I know this is a good radiation - intellectually. They asked what would calm me down. I told them to please tell me each and every little thing they're doing so I don't have space to freak out and wonder. They were great. They did exactly that. It helped a lot. I start with #1 a week from today. I'm so worn out. Truly. I got home and was like "enough!". Next week on Thursday morning I have my first lymphedema PT appointment, then radiation, then a CT scan on my neck for another lump. For God's sakes people. All in one day! The neck thing is likely nothing, but we're playing it safe. Still - omg. I'm soooo over it. Thanks for letting me vent. I'm feeling worn down. But as I was lying on that table, I was trying not to chuckle about my position and knew enough to say " I want to be as comfortable as possible" because of you, Esther. I knew any strange, awkward position would haunt me! LOL.
I love this group and hate all of your ex husbands/boyfriends! LOL! I want them to leave you all alone so you can go through all of this without more drama!
Sending hugs to all.
Jen
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Hello everyone,
Since I don't go to the RO until tomorrow afternoon and I had my Oncologist appointment last week, I gave myself a day yesterday to totally forget about my bc. It wasn't easy but I was at least able to stop myself from googling stuff! I'm anxious to meet the doctor tomorrow and get my appointment scheduled for mapping. I have a feeling I'm going to be scared too Jen! I know my blood pressure will spike and I will start talking a lot from the nerves.Does anyone else have problems with their blood pressure rising during all of these nerve wracking appointments? I try to do deep breathing in the waiting room to calm myself down but inevitably I get a high reading. It's always something, eh?
I listen to a lot of podcasts also, I like the Memory Palace as well as The Truth. All the radiotopia group of podcasts are all really good! The drive to my appointments as well as radiology are all around 35 minutes, which isn't too bad, but I'm really hoping the radiology appointments aren't late in the afternoon so I get stuck in traffic on the way home afterwards! I'm hoping I will feel well enough on the way home to buy some kind of treat to boost my spirits. Ice cream, fancy coffee or something else I don't usually buy for myself, do you all do the same?
Take care everyone! I'll let you know how my appointment goes tomorrow. I hope the doctor's nice. So far I've been lucky, my surgeon is amazing!
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#12/20
Funny you should ask about hair Ivy, I am literally here fresh out of the salon. She was so sweet, she gave me an extra long shampoo with scalp massage and I'm in Heaven!! I didn't have to do chemo, so I never lost my hair. But, I'll be 50 in April and I found the stress of everything was really making me gray. So last appointment I asked her to embrace the gray and match my color to it, I now have an ashy brunette/blonde and you really don't even notice the grays. Some self confidence restored!!
Jen, I also found mapping to be a little overwhelming emotionally. I'm glad you got through it and I hope you treated yourself to something nice after and know that I am sending you a million virtual hugs! Just think, you are one day closer to it being over!!! I, on the other hand, apparently have not had enough ...There are these huge posters all over the hospital about how you should get screened for colon cancer earlier than 50 now and how it's the #2 cancer...So, I am having a colonoscopy next month just to be safe. Well, before hand I have to drink half of the prep liquid the night before and then the remaining half the day of. I picked it up today and I am NOT KIDDING this jug could be a spare gas can! Are you kidding me?? I just started laughing like a maniac at the pharmacist. Of course it's a ginormous jug! Of course it is. LoL.
Esther, yay on being officially 1/3 of the way done!! Your tips and tricks and information are invaluable, thank you so much!!
Jasmine, I hope you don't get stuck in traffic either & I think it's important to treat yourself! Lately I've been getting smoothies as a treat. My blood pressure is always high when I go in, even when I'm trying to relax myself! My fiance says I have "White coat syndrome" now where I just get nervous and my blood pressure spikes. I hope your RO is wonderful, can't wait to hear tomorrow.
Have a great night everyone!
Michele
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Well, it was the same 10 songs again, so Whitney Houston and I drove to #11 today. Seriously, did I really need to be singing, "I wanna dance with somebody?" How funny is that when in reality you are driving to radiate yourself.
What timing, Ivy and Michele! I'm glad to hear about the relaxing salon visit, Michele! We need something like that during all of this.
Serendipity, you are SO funny. You have such a healthy attitude regarding your ex.
Jen, as always, great insights in your posts. Isn't that true? We are way too hard on ourselves. Later in life we look at our younger pictures and think, why didn't I appreciate that more? I've been thanking God a lot lately for the blessings I didn't see until life skidded to a halt with this diagnosis. I'm glad you made it through today. Hurray! You did it!! Truly, the mapping is the hardest part by far, and now it's behind you. I abhored it too, as you all remember from my whining
Ok, I took a look today at the big radiator (my eyes have always been tightly shut, hahaha) and this will sound ridiculous but it was designed in such a way that it looked like it was reaching out and embracing me, helping me beat this cancer. If I can get the photo to upload, I will post it here later. Lately my phone doesn't want to cooperate. I accidentally caught the tech in the photo, but he's facing the other way.
And, I celebrated today because I GAINED A POUND. I am officially one less pound too underweight. Hopefully some of that padding went to my tailbone
Two tips for the day...
1. Water, water, water.... for our skin and connective tissues.... even before we start. I am using one of those cute thermoses from Amazon and typically take in 56 oz.
2. Friction... Today was the weekly chat with my RO. He reminded me that even if we don't see redness in our skin, keep friction away from it. He said put a cushion between you and the seatbelt, and to keep your left hand on my hip all the time, like the song, I'm a little teapot, short and stout.
This is why we are told to wear soft, loose, breathable cotton. I'm going to grab that lumpectomy pillow and start driving with it. I could invest in some quality sheepskin, but hey, I feel like I've had to buy so many things lately that I don't want to buy one more thing right now unless I can eat it.I love all of your posts... Night...
Love and blessings,
Esther
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Hahahaha!!!! I saw a hilarious typo in my post, but it's so funny I'm leaving it!
No, my RO was not flirting with me. I meant to say, "keep my hand on my own hip."
HAHA LOL
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Esther, I saw the typo and literally laughed out loud. My RO is a hottie! He's got this George Clooney thing going on, and even though I don't like the reason as to why I need to see him, I do look forward to my visits with him. LOL.
Thanks for the tip on no friction. I'll be sure to take my pillow. I have no feeling on my breasts so I'll have to keep be conscious about the different things you all are experiencing on here.
Hoping today is a great day for all of you lovelies!
Ivy
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Hey not fair! All my doctors have been women! LoL.
So, I have great news! I just went from 12/20 to 12/16 treatments!! When I did my 2nd mapping on Monday for the boosts, there was some question of position and the tech called in the Resident Dr who called in my RO so they could all discuss. Today I got a call from my RO who said that they went over the treatment plan extensively and they concurred that the tumor area is getting adequate coverage from the whole breast radiation and they don't believe that there would be any significant benefit to the boost sessions. Therefore, they are just doing a single boost session next Wednesday (Which is also my engagement anniversary!) I'm so excited to be done early.
Hope you all are having a great Friday -- Any fun weekend plans?
xoxo - Michele
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Congratulations, Michele, that's fantastic news. I'm going to calendar week 6 so I will remember to start negotiations with my RO about maybe shaving off a few sessions at the end
I wonder if he'll go for it. Probably not, but never hurts to bring it up.How did everyone else do today at rads?
Ivy, the George Clooney thing going on... that was hilarious! Can you tell even with the mask?
I wish I could say that we have fun weekend plans, but I need to spend some time at my home office catching up on these med bills that keep rolling in. We do love going to garage sales on Saturday mornings so we might do that in the morning. I'm just so happy for weekends because at least the work emails stop!
I'm now officially driving with the lumpectomy pillow again. Found a spot for it out to the side that keeps the seatbelt off my collarbone.
Love and have a great weekend,
Esther
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Mich21 that is awesome! I'm so happy for you!
Esther - even with the mask I could tell he was cutie, lol, it's all in the eyes. Oh and the salt and pepper hair! But don't think I didn't look up his profile on my patient portal page to see his pic.
No plans really for me. It's going to be warm and humid here as it has been, and ever since I started chemo in April 2020, I haven't tolerated the heat very well. I used to love summer...the heat and humidity; all of it, but, and, I'm sorry to say this, I cannot wait for the summer to be over. It's been unbearable for me. Not sure what chemo did to me. I thought this summer would be different, but nope.
Have a good night!
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Well friends my RO was no George Clooney, not even close but he was very nice! I felt very well taken care of in the office between the nurse and the doc. Mine was only the consultation so I have a feeling I may not be starting in August but I hope you don't mind if I hang around with you all for awhile!
Have any of you kept your diagnosis from friends/family? Since I was VERY fortunate not to have chemo I have been able to keep things private. I've told very close friends and our family but I haven't told anyone in my neighborhood or people I don't see very often. We just moved to this area when we retired so I don't feel very connected to a lot of folks, so I guess I didn't want to broadcast my news and have a lot of questions constantly. It's very friendly, and people are well meaning, but I just figured it was best this way. Believe me I've almost slipped up a few times, but I know if I tell just one person, everyone will know!
Enjoy your weekend!
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Jasmine - I'm right there with you, I haven't started rads either, but have had my consultation with the RO, twice. We expect for my PS to clear me for rads on Wednesday (I'll be 7 weeks out from my exchange surgery and 4 weeks from tumor excision). Assuming she clears me, I'll meet with the RO and his team again on Friday to get everything going. I'm hoping this group will keep me too
When I was diagnosed April 2020, I only told my mother and my older brother and asked them to not tell anyone. Because the pandemic had just started, I told two friends in the neighborhood as I knew that in an emergency they would be the one's I'd call and also I knew they'd be a support system for my son (they were the mothers of his friends). My mom lives half an hour away and was not well, so to expect her to come help me was not an option. I chose to keep it quiet only because I wasn't comfortable with everyone knowing and I'm glad I made that choice. I wasn't comfortable in my own skin.
When I had my exchange last month and thought I was at the end of this ride, I started to tell others as I had ditched my wig and questions were bound to come up. Little did I know that I'd be diagnosed again three/four days after my exchange. This time around I, again, have kept it quiet as my mother was in the hospital and knew she couldn't handle it without worrying herself sick (she knows now, but isn't speaking to me (that's another story). I ended up telling an uncle I'm close to as I was having another surgery and listed him as my emergency contact and again so that my son had someone to call if necessary. My brothers alienated me the first time around, I don't think they'd be around this time. There are several reasons why I chose to keep quiet, not so much a secret this time around, and that was/is my right, as it is yours. We need to be comfortable as we're already going through quite a bit.
Hoping you have wonderful day! {{Hugs}}
Ivy
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Jasmine and Ivy,
Wouldn't be the same around here without you at all! I'm so glad you are staying with us, and we will stick with you when it's time for your first day. I can't wait to hear Jen's wonderful laugh at the George Clooney lookalike.
Ivy, my heart goes out to you with respect to your mom and brothers. I am so sorry. You have been through so much and family situations can really complicate things. When Jasmine mentioned whether we have told friends and neighbors about our diagnosis, I thought, Yes! It is a very personal, individual choice we get to make, and there is no wrong decision about that. I am a very private person, and I have never told people about my health matters.
Due to my personal weirdness, this time I felt different. My neighbors opened up when I told them, and are so much friendlier. Sometimes people are looking for ways to be kind and it feels good to make a difference to help someone out. Not to make too much light of what is definitely a serious issue - you both know my ridiculous sense of humor by now - I will say jokingly that I am reaping some pretty sweet benefits from having spilled the beans.
I figured I would, since they always see me race off (running late) to daily appts and come home wearing a colorful armband from the IVs, and I've obviously lost 25 pounds, so I must look like I just came off a deserted island without food. Now they all smile and wave with a thumbs up sign. A few have sent sweet cards; cancer has touched their families too. My favorite perks have been one neighbor coming over and dragging my garbage cans to the curb each week, and also that no one is complaining about my new windchimes. I've had them for a month and I'm worried they're too loud, but not a peep from anyone! Then I thought, Oh, wait, they might be giving me a pass for now.
Once when I did not have a ride to an IV infusion, a neighbor, who had offered previously, was delighted to drive me. It comforts me to know that my neighbors are no longer strangers and that I am not alone here in case I need help. Just my own experience so far. I look forward to being there for my neighbors now, if they ever need me.
Not sure if I told you, I have been craving cheese enchiladas for weeks but hate not knowing what the restaurants cook them in, so I am making non-GMO, non-rbst cheese enchiladas today and also trying macadamia nut milk in my protein smoothie!
I hope you're all having a great Saturday.
Love,
Esther
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Hello ladies!
Well. So much to catch up on and it's only been a little bit of time! I know I'll miss responding to a bunch of stuff, so I'm sorry - in advance.
First: you are all killing me with the George Clooney thing! LOL! Honestly, I haven't even really looked at my doctors - I've been so full of overwhelming feelings when I've been with them, I wouldn't have known if one of them had actually BEEN George Clooney! LOL! That said, I have described my oncologist as a "genius/doctor version of Mr. Rogers" when talking about him with friends - LOL. He has that demeanor and way about him, which is very soothing to me, as I'm 52 and I loved Mr. Rogers as a kid. I swear, you'd think it was Mr. Rogers if you met him! LOL.
Esther: yes, water water water (and now that I can drink it without gagging, I'm so happy and I'm drinking it as much as I can stand!). And also, yes, friction. I'll be using that cushion between my chest and seatbelt, etc. Thank you so much for the suggestion! Also - yay that you've gained a pound! You are beyond hilarious about the padding. OMG.
Mich21 - I'm so glad you had a chance to enjoy time at the salon! Sounds so relaxing and good. And I'm working so hard to find ways to be kind to myself. Thank you for your virtual hugs. I'll take them! xo You are so sweet! And hilarious! You saw the posters about colon cancer! OMG you are too much! But good for you - get your colonoscopy! It's yukki, the prep part...I've done it, but it will give you peace of mind to get that off of your plate! And yes - it is a Giant jug - LOL! Also: I'm so happy for you that they reduced the number of treatments for you! That's AMAZING. Also: What is a "boost session"? Anyway, I'm so happy you'll be done sooner! xoxoxo
And the discussion about keeping the diagnosis from friends/family. My goodness that topic has occupied my mind and heart and spirit relentlessly since day #1. Who to tell? Who not to tell? Why? Why not? You may have already figured out that I literally never, ever turn my brain off - like ever. LOL. I always have to figure out why I'm making choices, I'm always checking in with myself about if I'm making healthy decisions with a clean heart or if I'm doing something because I've been triggered re: something from my difficult childhood, etc. I tire myself out with all of this! LOL. And my poor husband! LOL. He's often like "honey, really? Can't we just watch a show?" LOL. Nope! Anyway, it's the way I am.
My beloved Grandmother, may she Rest In Peace, once talked with me about the difference between privacy and secrecy. I have always appreciated that talk, and I have had the same talk with both of my kids. She explained to me that privacy is about self-respect, respect for others and trust of others and healthy boundaries. Secrecy, on the other hand, is toxic and is more about shame and is very unhealthy. I've always found that so useful and so I check in with myself about this a lot. When I first was diagnosed, I was enraged that I'd have no privacy once chemo happened. I found it painful to be so "public" and it felt so unfair that I wouldn't get to choose privacy if I wanted or needed it. Honestly? I still struggle with that. I am a very verbal, gregarious person - I'll chat with anyone and everyone without hesitation. That said, just because I'm comfortable engaging with people - doesn't mean I am not a private person. In fact, I'm a very private person. But this experience. I"ve felt challenged on so many levels.
I initially shared some of the diagnosis stuff with a few of my closest people. I really had to deal with the privacy issue when my son started baseball season and he 100% wanted me to attend games. When I said "if I don't wear a wig, people will know. You get to choose if you want me there or not - but please know, if I go, I won't wear a wig - just a hat." (my scalp has been so tender since chemo started - not only do I hate wigs but they hurt) He paused and said "Mom, I want you there one way or another. It matters to me." So I've been navigating this privacy vs secrecy thing the whole time as deliberately as I can. I've ended up telling more people than I would have imagined telling. And I've been approached by neighbors who have been kind - and one neighbor who was horrendously intrusive when she saw me walking down the street with just a cap on (remember, I had a ton of curly hair before - tons). People have said and done such generous, lovely things - and then there have been horrendous, gross things said to me. I could give examples that would make you all furious and also examples that would warm your hearts. I've learned so, so much about myself and about others and about how we all do or do not cope with mortality and about leaning on people and about asking for help and about setting firm boundaries throughout this process. Really even the learning exhausts me! LOL.
I'm sure there were like 20 other things to respond to, but I'm exhausted and I'm going to rest. I'm sending all of you love.
I am glad to share that today was the first day I've felt a bit happy - since before my diagnosis. That's the truth. I haven't been depressed, but I have either been so sick or in pain or tired - it's all always too much (I know you all know what I mean). Today is our 22nd wedding anniversary and we spent the day with the kids wandering around a beach town and we had dinner outdoors on the beach at a really yummy classic Maine restaurant and went to a fun candy store and now the kids are watching shows with their Dad and I'm up here in my PJ's wiped out. I was even able to taste a Diet Coke! It was so thrilling!
We had fun today. And I can honestly say I haven't had "fun" in many, many, many months. I may not have much fun or feel happy for a while again - but it's good to know it's possible, even with cancer. It's hard to escape or forget about all of the cancer stuff - even for a few minutes. At least for me it is. but I managed it for a bit today. What a relief. I start radiation on this coming Thursday, the same day I start PT for my hand, and I'll do 20 days of radiation.
I'm so grateful you're all here. I wish I could hug you all in person. But since I cannot, I'll hold you all in my heart. Hope you all have a peace-filled Sunday.
Jen
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Ivy, my heart goes out to you when I hear about your mom and brothers, but I'm so glad you've found all of us. It's so nice to chat with people going through the same thing at the same time even though I wish it was for a better reason like...maybe recent lottery winners support group, or how to deal with the problems of being rich and famous!
It is funny how the first thing I thought of when I got confirmation of my diagnosis was how will I tell my two daughters. Even though they are married adults they are still my babies and I didn't want them to be upset. They've been a great support ,but since they don't live close by, I still find myself keeping things light and funny to not worry them.
Enjoy your Sunday everyone. I was going to write a lot more but all of sudden I've gotten so sleepy. Night
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Serendipity09 - I said to my husband this morning, "I cannot wait for Autumn" - Like you, I've always loved summer and heat and humidity and just sunshine in general. Since I started chemo, I have not been able to stand/tolerate it at all. I have been wondering what chemo did to me and if it will ever wear off or if I'll just not be a summer/heat person ever again? I have found the heat truly unbearable. I'm reading your note from the other day now and maybe it just won't change? I don't know if I've said this to this group already (sorry, still dealing with chemo brain - ugh), but there is a lovely tree in front of our house. Every year, around mid-August, it changes and turns a bright, gorgeous red - way too early. Every summer I've called out to the tree - a few times - often in front of my kids: "hey, tree! It's not autumn yet - wait a few more week, please!" - we've always been eager to stretch out the days of summer. This year I saw it turn red and said "I'm with you, tree, bring on Autumn!"
Anyway, who knows what chemo does. But it does something, that's for sure. xoxoxo
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Jen, your day sounds wonderful! And since I’m currently trying to kick the Diet Coke habit I’m insanely jealous of your little taste and so very happy for you!! They were going to do 5 boost sessions which are a different type of beam that goes more shallow and just to the scar/lumpectomy area. But they decided that the whole breast treatment was adequately getting the surgery site and there was no significant benefit to the boosts. I am so okay with that.
Yesterday I was wiped out and slept half the day and spent the other half binging Netflix- it worked because today I’m in a spring cleaning type house cleaning whirlwind. It feels extraordinary to have my old energy back. I’m 49 and pre-menopausal so on the 30th they are starting me on Lupron shots (1 every 3 months for 5 years) to stop my periods and Anastrazole. I’m getting slammed into menopause. Luckily my fiancé has a great attitude about it, he said maybe I’ll have hot flashes and will actually let him turn the AC down as cold as he’d like lol. He really is so supportive and loving.
it’s funny talking about privacy- I’m extremely private. I am so talkative and open and friendly, but I don’t ever reveal my own vulnerabilities. I’m proud and stubborn. When I first got diagnosed I struggled with feeling broken or somehow less-than people who don’t have cancer. I told only those close to me at first. I felt shamed by my diagnosis.And then I went off the rails and put it on social media. To face my fears I suddenly developed a “This is me” mentality- And while I still don’t share my fears outside of this forum, I do talk about being at radiation and what’s going on. I have so far had a very positive response. (Not counting the friends that disappeared).
Jasmine and Ivy - So happy you’re sticking with us
Esther - Enchiladas sound amazing. Let me know how they turn out.
Xoxo- Michele
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