September 2013 Chemo Group
Comments
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Hi Kay,
Thanks for thinking of me. I'm doing OK, mostly. I did have a total meltdown today, started while driving to PT, all through PT and continued when I got home. Just one of those days. I'm going for PT because after surgery, I can't lift my arm high enough over my head to get rads. I have my simulation on 4/14 and start the next day. I'm right behind you. I'm glad it went relatively well for you today.
I'm not sure about MamaBear, but I think BetterDay is on a cruise right now??
Hugs, Kelly
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what is worse than waiting for CT results? Waiting for your child's CT results!!
Tom ended up in the ER today. After all was said and done, they believe he had a bad virus, which caused him to become extremely dehydrated, and all the blood in his urine was from being very dehydrated and his kidneys being super kidneys (in a good way). The CT showed that he is otherwise perfectly healthy. YAY!!! Home with pain and nausea meds.
<big sigh of relief>
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That's scary. I'm glad everything's OK, Kathryn!
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Viji, I also have been having the hotflashes at night. Having a ceiling fan helps, but if I go to bed comfortably warm, then wake up a ton of times with hot flashes. If I go to bed with less layers and/or covers and with the ceiling fan on, I shiver myself to sleep, but have no hot flashes. There is no middle ground.Peacock, How'd the scan go?
KJ, So glad your son's scan turned out OK. I cannot imagine having my child go through this. I would go through it a hundred times to not have them go through it. I know several kids in town that have gone through cancer, and it brings me to tears just thinking about it. I hope your son is recovering from the virus and feeling better.
SpecialK, How are you healing from the surgery?
Alfranco and Josgirl, Glad for the vitamin E tip. I am trying it, and hope it helps to decrease the hot flashes somewhat.
Audra, I can relate to your felling of being "old and weathered". I feel like I've aged 10 years in 6 months. I think I look like I've aged 10 years in 6 months too!
Knightzoo, When are you moving? Is it a local move or a distance move? Either way, I am sure it's overwhelming. Moving is so much work, but it really will give everything a fresh start too.
Running and Josgirl, How's the running going? I definitely find myself tiring more easily. I probably just need to be more patient with myself, but patience was never one of my virtues, and as you can see, it still isn't.
Kay, I hope your skin does not suffer much from the rads. Maybe mention what you are feeling to the techs, so they can document it.
LHL, If you color your hair, let me know how it goes. I am chicken, but do plan to meet with my hair lady next week. She's all tied up this week. How's hubby's tongue healing?
Mercedes, I think c'est la vie needs to be my mantra for the next few months!
Chickchick, Yesterday must have been meltdown day. I was just really down and sad all day. I had cramps too, so I was wondering if it was PMS...geez...not ready for that yet. I'd better not have hot flashes AND PMS...probably just my hormones playing games though since I woke up today feeling 1,000 times better and more positive. I hope today is a better day for you too.
Speaking of better day, Betterday, If you are one cruise...hope it is awesome. If you aren't, check in and let us know how you're doing!
Cougar, 70charger, mama, Art, and anyone else I've missed (not purposely...just sleep deprived) that hasn't checked in recently, let us know how you are doing!
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Oh, I forgot to add...we (my family) have finally set a date for the Karen KCA (kicked cancer's ass) party. It is June 21. Hubby will be smoking and/or grilling about 6 different types of meat and fish, so if any of you will be passing through Iowa at that time, PM me, and I will give you my address. You are all invited (families too). You have been such an important part of my journey, and are all responsible fo rme coming through this with my sanity (relatively) intact. -
kj - glad your son is ok! So scary! Mine grew to six feet tall in the 8th grade and they had to have him see a neurologist to check him for a pituitary tumor with a head CT - I was pretty rattled. He was fine - just super tall. He didn't stop until he reached 6'3"!
kbee - I am still laying on the bed! One of the tears is more healed than the other and looks pretty good, but the larger one is still concerning. I have an appt. tomorrow so will know more then. Thanks for thinking of me!
You guys will find that once you get some distance from chemo that you will look better. I have some aches from aromatase inhibitors, but my face/hair started looking better the longer I was out from the last chemo.
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Hello, ladies. Thanks so much for thinking about me. I was indeed on a cruise, with no internet access. So I have a lot of catching up to do on this board. I had a great vacation -- ate and drank way too much (and loved every minute of it with only a tiny bit of guilt for the indulgences). Swimming, water slides, snorkeling, mini golf, dancing, massage at the spa. Ahhhh. The only thing I wanted to do that I couldn't was the ropes/zip line course on the ship. It included a "walk the plank" thing where you walked out a plank that extended over the edge of the boat (way up on the 17th deck!). DH and DD loved it. My PS hadn't cleared me yet to support my own weight with my arms, and I didn't think I could trust myself to rely on the harness if I slipped rather than trying to catch myself. It was still fun to watch.
The only downside was this stupid back pain. Turns out the minor arthritis they spotted on the xray wasn't in the area of my back where the pain is. So I saw my MO right away when I got back from vacation, and she's sending me for an MRI next week. Never ends, does it.
I love, love, love all the hair pics. Mine is finally filling in, though I have a long way to go before I catch up to all of you. Maybe in a couple of weeks I will have enough to make it worth posting a photo.
Best to all of you continuing and starting rads and to Peacock on the CT!
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BetterDay- Your vacation sounds like fun! Glad you were able to get away. My sister's coming to CA this weekend and we're booked for a long weekend in one of the downtown hotels. Not quite the Caribbean, but a nice little break, nonetheless.
I wish you the best for your upcoming MRI. It does seem like the medical stuff never ends! Hugs to you.
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CT shows no signs of metastatic disease. The nurse practitioner was also happy to tell me that the cyst on my liver, the fibroid in my uterus and the area of interest in my lung was unchanged. Oh but the ovarian cyst seems to have disappeared. *Huh*???? I was never told about those from my first pre chemo CT! She did appear surprised by that...as much as we were. She then sat down with us for almost 90 minutes and went thru both CTs findings, both the written report and the images. She said the onco (who didn't bother to tell me about those original findings) wants to see me in 3 months but after that I can see her from now on. I have an area of "haziness" in my left lung ( suspect changes from radiation) and she wants a repeat CT in 3 months to check the area out because it can't be imaged well right now. I also have the bad boob mammogram in the next 3 months and both boobs mammogram in July. She said breast density is getting characterized better and dense breasts are subject to MRI. Ugh. That was one test I never wanted to do again.
She told me to approach the nerve pain and swelling in my hands like an injury and really get after it with ibuprofen for 7 to 10 days. I agreed. I've had plantar fasciitis and a shoulder tendon injury in the past and I know it takes time, ice, getting the inflammation out and avoiding things that exacerbate the problem. Going to get scientific about this and get rid of it.
KJ, glad you son is okay! Better day, the cruise sounded great! Kbee, the KCA party sounds awesome. I want to do this for my 45th birthday in May.
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Yes, thanks for the invite, KBeee! It sounds like a good time.
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Thanks for the invite Kbeee.
I haven't felt like posting. Too depressed over hubby's cancer test. He had it yesterday, so we feel a weight has been lifted. It was all clear. I'm not celebrating just yet, I think they may do one more test. The stress of 2 months waiting has taken a great toll on us. We have both just shut down. Today I booked 2 weeks in Mexico! I have my RO follow up on the 10th then we are out of here, leaving this behind. I also have really bad chemo brain days if I am tired or stressed. Stressed u say! My chemo brain affects my speech. Some days so bad cannot talk 2 sentences. Just slowly one word at a time & struggle with that. So frustrating when the words won't come out. Sucks, you can't talk to anyone. I just want a happy day. Pity Party over Thanks for asking about me.
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KBee,
Save a bratwurst for me!!All,
Thanks for the kind thoughts and prayers for Tom. He is feeling so much better today. So grateful for modern medicine!Update on my radiation burn. We have definitely turned the corner in a positive way. Feeling much better the past day or two. The skin has gone from a ripe raspberry color to a raspberry lemonade color. Oh so nice!! The silvidine has been outstanding. Greasy and annoying (because it gets all over the inside of my garments), but very very effective! While it is somewhat painful, I've learned that cleaning the area very thoroughly every day is also helpful. Don't just let the dead skin linger. I take some extra pain med in the evening about an hour before getting in the shower. Then take a long shower and let the peeling skin get really soaked and easy to remove. After the shower, re-lather with silvidine and then get a good night's sleep.
I enjoy reading about everyone's experiences and daily celebrations. We have all come so far in the past 7 months!! Betterday, very jealous of your cruise. Maybe we should all take a cruise instead of Vegas? :-)
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70Charger,
Great news about your husband's tests.
I share your frustration about chemo brain. I have always been blessed with being articulate. However, chemo has affected my ability to express myself quickly and easily. It has become somewhat of a standing joke... I used to have an annoying habit of finishing other people's sentences. Now, I'm getting lots of friendly payback. ;-) Be easy on yourself. It is a small price to pay for many more years with family and friends. -
Hi friends! I had my port removed yesterday! It sounds like I had a more involved procedure than some of you (started out in day surgery, had Versed sedation plus local anesthesia and oxygen and an iv, and stayed for three hours post -surgery). I was so sleepy that I slept most of the day and night yesterday and napped today too. I'm a little sore today, but happy to have that thing out and be DONE! Just one more PT session tomorrow! Wow! 10 months of BC treatment and procedures!!! My party is June 7 -- one year after my diagnosis! Its going to be a dance party, with the theme, "We Rocked Cancer Together"!!! Come to Duluth; the snow MIGHT be gone by then!!!
I saw my MO on Thursday! He said he doesn't do blood tests for breast cancer and only does scans if we are worried about something we find. I have to have a mammo in June and need to get in for a pelvic exam as I'm now on tamoxifen... but other than that, he'll see me in three months!!
KBee, Viji, and others with hot flashes, I take 75 mg of Effexor and that reduced my hot flashes tremendously! It helps my mood too!
Kbee and Josgirl- I cross-country skied 4 times last week, which was fabulous. I'm going to Arizona next week, so I hope to get some running! It is hard to get motivated, especially when dealing with tiredness and life.
70sCharger! You're really going to Mexico!!! The last few weeks sound like they have been very stressful! I hope you and your hubby have a chance to relax and have fun!!!
BetterDay! Welcome back!!! Your cruise sounds like a blast!!! What a great way to celebrate! Good luck with more tests and getting rid of pesky pain!
Simplelife! Your hair is cute!!! I'll be interested to see what you do with the "Bermuda Triangle" of white... but you could leave it, too! You earned all those white hairs!
Knightzoo! Happy Birthday! Mine was Saturday! 49 and happy to be alive and getting healthy again!
Kj! Good news about your son! Sorry you had to go back to the Dr. and wait for test results though! Too much of that in the past year!!
Thinking of the rest of you, too, but if I try to scroll up to remember what everyone's doing, my whole post gets deleted!!!! :-)
Patty
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Hey all! I've been busy now that I've returned to work full time (after seven months off). I've done three fills in my TEs so far, and hopefully only one more to go next week. After my fill I'm scheduled for my radiation simulation. I'm a bit nervous because I still don't have full mobility in my arm - I can lift it up over my head but it definitely is tight and I'm not sure how long it can stay in that position. For those of you with rads, how long was the simulation and how long will I need to be in that position? And do I need to lift my arm if they are not zapping nodes (since I am node negative, they aren't planning on radiating nodes)?
I finally did my dentist appointment and am happy to report I got an all clear checkup! So no mouth full of root canals like I thought due to chemo.
Keep everyone's hair pics coming!! Mine is coming in dark (whew) and even. Not enough for me to go topless yet but hopefully soon. I'm at that awkward stage where the hair is long enough it itches under my wigs...but I don't want pity stares at work so I will keep wearing the wigs until I get it to a cute pixie length.
I love hearing about everyone's celebration vacations! A couple friends of ours have offered up their beachfront condo in Maui whenever we want to celebrate. I just feel bad coming back to work after a long hiatus, just to leave again a couple months later on vacation! But I do need some sort of hurrah trip after all this is said and done! Have we figured out the Vegas details yet?
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My noggin at 6 weeks Pfc...it's filled in darker now that I'm at 8 weeks
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Cougar
I go Wednesday for my rad simulation. My BMX was 3 weeks ago & PT told me my ROM is fine on that side. But still I am a bit concerned that will be a long time for me to keep it in that position.
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Rad sim about 15 min but you aren't completely flat. Your elbows rest on a pad that is about the height of a thick pillow.
Yes I'm in DC at the hockey tournament I busted my lil butt to get done with treatment to get to! Yay!
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Clickchick, have a great time with your sister. Sounds like a great weekend.
Kbeee, I so wish I was in your neck of the woods for your KCA party. Sounds awesome and delicious!
Peacock, so happy to hear no sign of metastatic disease, but wth on the info from that first CT? That is totally unacceptable. At least your NP seems to be on the ball.
KJ, so happy to hear about Tom's CT and that he is feeling better.
70charger, very happy to hear about your husband's test and your trip to Mexico! Awesome!
Running, yay on the port removal! I was as happy to get that stupid thing out of me as I was to be finished with everything else.
Simplelife, someone else had mentioned RAGBRAI. You should totally look into it. I have a friend who has done it a couple of times. It sounds like a total blast.
Cougar, if you can swing it, you should take up the Maui offer. You deserve it! Great pic too!
Vintage, hope your surgery recovery is going smoothly.
Knightzoo, enjoy DC! You went through so much so fast to get there!
To everyone else, I hope you're having a nice and easy week.
I have been trying to get a good selfie to post, but I keep trying in my office. Let's just say fluorescent lights make everything ugly. Maybe I should try the car -- it works so well for KJ!!
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Just to chime in on the rads simulation. My first session where they did the actual measurements and CT took closer to an hour. They suggested that I take a pain reliever beforehand if I thought I would have a problem. I took a muscle relaxant and didn't have any problems, but my ROM was pretty good from PT at that point. My second session (the verification session) took about 30 minutes. My arm fell asleep during that one. It might have been a good idea to take a muscle relaxant again...I just didn't think I would need it. I'm getting radiated on my left side, so they have to worry about my heart. Things might go faster if it's the right side being radiated or if the nodes are not being radiated.
Cougar, I'm getting my nodes zapped, so I don't know for sure if you will need your arm up or not. I'm guessing you might anyway just so they can zap your chest area without getting your arm....just a guess. Let us know when you find out, I'm curious now. You hair at 6 weeks pfc looks more like mine at 12, but that could be because I finished with AC....the real hair killer!
KJ, I'm glad Tom is okay. That was quite a scare. I'm also glad you skin is getting better. From everything I've read, it seems most of the time things start healing very quickly beginning about two weeks after the end of rads.
Running, I love your plans for you celebration party! That's interesting that your "deporation" was more involved. Congrats on it being removed!
70charger....I'm so glad to hear your hubby's test came back okay. I hope things continue that way for both of you. Have fun in Mexico!
Betterday, whoo hoo on the WONDERFUL cruise. That sounded like so much fun!
Peacock, that is awesome your CT turned out okay. I also had dense breasts before bc and my MO told I me while I was on chemo that I would need MRI's going forward. My breasts feel a lot different now after chemo (much softer) so I'm curious if they will say something different when I get my first post surgery mammogram done. To me, the breast biopsy and the MRI were both extremely uncomfortable tests. I'd rather have an MRI if I need it...as much as I hate the test. I had a "normal" mammo 7 months before getting diagnosed with a 2.3 cm tumor, so I kind of feel like mammos are/were a somewhat worthless test for me. I never knew that breast density increased my risk of getting BC or that mammograms were so unreliable on dense breasts until after I was diagnosed. It made me really mad....and really sad...when I learned about that a month or so AFTER diagnosis. It's something that I feel needs to be disclosed better to women with dense breasts.
I've gotten back out on my bicycle for two days in a row now. I am so happy about that! It's the one form of exercise that I truly enjoy to my core.
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Coug,
For the simulation, I had to be still for about 15-20 minutes. In regular rads treatments, it is only 5-10 minutes, maximum. You can ask them about keeping your arm more at your side. Whether you need to have your arm completely up over your head really depends on the angles they need to hit your spots well. Good luck! You can do it!! Your hair looks great, too!Vintagegirl,
They will work with you to help you be as comfortable as possible. It was easier to position my arm in the beginning than towards the end (where it was starting to stiffen up and stretch the dry skin).Betterday,
Selfies in the car are the best!! ;-)Knightzoo,
Enjoy DC. It is one of my favorite places.Tom is doing great. Back to school yesterday. Got a good night's sleep last night and was off to morning work-outs with the team this morning at 0530. :-) Thanks for your prayers and good thoughts!
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Question... I've been taking one percocet and one tylenol migraine together (every 5-6 hours) for pain management during rads recovery. Sometimes it makes me really loopy, sometimes not. Why does it vary? Is it what I'm eating/drinking with it? Time of day doesn't seem to matter. It used to be very predictable. Not in the last few days. I'm wondering if my blood counts are low again?
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Hi everybody, I've been away a while; it's great to see everyone doing so well!
I have finished up rads (25 sessions, no boosts). I was done 3/26. I had supraclavicular and full chest wall area rads. Right now, the back of my shoulder and my collarbone, which were really red and sensitive a week ago, are MUCH better. Now the skin over the breast area itself is more red and sensitive than it was a week ago, but if it follows the same pattern as the shoulder/collarbone, it should improve by early next week. I have slathered on Aquaphor, eaten a lot of protein, rested A LOT (hard for an on the go working mom like me) stayed hydrated, taken Hair, Skin and Nails (which seems to work great)....and just tried to be patient. So far, so good. I see the MO in about an hour; I think I'm getting my Tamoxifen script today (oh joy) so maybe I'll be back later.
And the hair? I'll post a pic when I get a chance. Let's just say the look is very Mia Farrow circa Rosemary's Baby right now.
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well....people's comments make me wonder while it took them so long to do my initial rads measurements. Warrior, I am also getting my supraclavicular nodes radiated. That makes me wonder about the back of my shoulder. I guess that area is going to be susceptible for me too as my rads go on. It makes sense when you think about the direction they have to shoot the beam.
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radiation simulation was today it took about 30 minutes now I have to wait for them yo call back with the date I will start I look like a coloring book upright now lol
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Southerngirl, I hope they get back to you with a date soon. The sooner it begins, the sooner it is done.Warrior, Great to see you back here! Congrats on finishing rads! I'd love to see a picture; post one when you get the chance. I hope the appointment with the MO goes well.
KJ, Do your symptoms vary based on if you take the meds on an empty or full stomach? A full stomach may slow the absorption time creating less loopiness. Glad to hear that Tom is doing better.
Simplelife, Thanks for the inspiration; I think I'll go for a bike ride after lunch. We are blessed to have a ton of bike trails around here, which is really nice.You would love, love, love RAGBRAI. My dad just rode along with a local bike club. He paid a fee and they took all of his stuff from each overnight stop to the next, which worked out great.
Betterday, Chicago is only about 5 or 6 hours from Des Moines; come on out!!! My husband built his own barbecue and smoker. I think he could give Bobby Flay a run for his money.
Knightzoo, So glad you made it to the tournament; I know you worked really hard to get all of the dates lined up so you could.
Vintage, Hope the rads sim goes well next week.
Cougar, You are beautiful! I would definitely treat yourself to the Maui trip.I also had a dentist appointment and was pleasantly surprised that I do not have a return trip until my next routine check up.
Patty, Glad you got the port out. Your party sounds fun!!! If Duluth were a little further south, I'd probably pop in! I'll be up in the Cities this weekend for a swim meet.
70charger, I am relieved to hear that your husband's test results came out clear. Enjoy Mexico; you and hubby have more than earned it!
Peacockgirl, Great news on the CT; I would be irritated that the restuls were not fully given to me before. Maybe have them put a note in your chart to give you written copies of all results from now on. I did that. They kind of rolled their eyes, but now they just hand them over without me asking. That's mostly just blood work and initial pathology, becasue my MO does not do scans which scares me...a lot.
Chickchick, Have fun with your sister!
Jen, We haven't heard from you in a while either. Everyone else that's been lurking...check in!
I finally bit the bullet and went bra shopping. I know after nipple recon in 13 days, I wll have a few weeks where I not be able to wear the sports bras I've been wearing. I also do not want the cow udder look those first couple weeks, so I knew I had to go and find some bras. I hate bra shopping and had just bought a ton of new ones about a month before I was diagnosed, so I was extra irrtated about it. It took well over an hour to find ones that fit...mostly because they do not carry too many in my band size apparently. Nothing cute, but found a few functional ones that should do the job. Treated myself to a cute pair of capris for my effort.
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Thanks for the support ladies. Don't know what I would do without all of you.
Nervous news today, we get "official " results wed on hubby's test. Should also find out if they will be doing any further testing. Very anxious about this.
Super great news. The resort we are going to has a spa. I e-mailed them this morning & the staff is trained to do lymphatic massage. I no longer have to worry about lymphedema while there. Happy dance!
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I never knew that breast density increased my risk of getting BC or that mammograms were so unreliable on dense breasts until after I was diagnosed. It made me really mad....and really sad...when I learned about that a month or so AFTER diagnosis. It's something that I feel needs to be disclosed better to women with dense breasts.
Kay, I feel the same way. I was always told I had dense breasts, but my doctor NEVER recommended further screening. I had clear mammograms the two years prior to my diagnosis, and even the one I had when I was diagnosed only showed "questionable area".... nothing definitive. Makes me wonder how long my stupid cancer had been there and might have been caught a LOT earlier before I got to Stage III if I had had an ultrasound or MRI. Grrrrrrrrrrrrrrrrr
Well, got the call today - rads start Tuesday. I don't know what the hold-up is....I was hoping they'd call early this week to start today or tomorrow...... UGH. I'll be doing rads till the end of May. Crapola.
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70charger, Praying for all good news today for you and hubby.Michelle and Kay, I feel the same way too. I have always been told that I have really dense breasts. I had a clear mammogram Dec 2012, and then a 1.9 cm tumor in Aug 2013. I was glad that I found the lump (well DH found it) because had I waited until my next mammo...5 or so months later, it would have been a whole different ballgame. I had asked previously about getting scanned more often or ultrasounds, but was always dismissed...too young, not high risk, I'm just a worrier, blah, blah, blah, blah.
I am curious how many of our cancers were detected on routine mammo, and how many were detected because we felt a lump? My lump was right by the nipple, so it was easier to feel than if it had been deeper.
One of my friends just got a call back yesterday about her mammo and had to go in fo ran ultrasound. She goes for a biopsy next Tuesday. This friend and I both have moms who've had breast cancer, so for years, we have shared our fears and gut feelings that cancer is in our future. When we found my lump, I was at the beginning of a 2 week stint in England, so I e-mailed her huge long venting e-mails each day...I had no one else to really talk to about it. Now the tides are turned (except that she is here, not traveling). I am praying for good results on her biopsy. When I went in for my mammo, the doctor moved appointments around and came in early to get my biopsy done first thing the next morning. While I greatly, greatly appreciated it, I knew it was an ominous sign. My friend's is next week. I am hoping that points to the fact that they do not think it's malignant.
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Hi BetterDay
all is going ok, surgeon was happy when he saw my thin faint scar yesterday.
Hubby had today off & while we were out, heading to lunch we got rear ended while in traffic stopped at a light. Thank Goodness however I was sitting that the seatbelt didn't tighten up on my chest when we got hit! I have a very sore sternum area as it is! We have a GMC truck so we got no damage but the gal's little Pontiac didn't fare so well on the front bumper when she smashed into our trailer hitch.
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