Is there a July 2011 group?
Comments
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Go Ana!! I am really getting my creativity going with my scarf collection. Can't decide which one to wear for dinner this evening - my big meal pre-chemo #2!
All - I think I pretty much ignore that fact that water tastes funky and my tastebuds will be dull for about 5 - 8 days. I am going to make sure to rinse with Biotene as often as possible to keep my mouth fresh and moist. Just keep drinking - water, water, and more water.
In the first cycle, I found that my tolerance for wine returned about day 11. The feeling of the alcohol stopped burning my tender mouth. Shortly after that, the flavors of the wine also came bursting back. This is kind of important for me, since I do enjoy a little wine with dinner.
So maybe I should also get a massage?
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Hi Everyone glad you all had a great weekend loved the pic Rabbit,I had severe stomache pain last night and today thought things would be okay by day 14 still have the hair.Next treatment is next monday I am the same as you Frankenboobs next treatment aug 15th every 21 days.Anna I ate ice chips the whole time during treatment i was told it helps alot I never had any weird taste in my mouth.I use Biotene toothpaste and rinse with club soda 6 x a day @ least it has kept the taste away and mouth sores.hope everyone is having a S/E free day Hugs
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hi Sandy, sometimes I get massive heartburn or gas pain or an almost migrane headache, out of nowhwere, weeks after tx and feeling great, then boom. I think these things just happen.
My darn period started yesterday, I knew something was up, I had sweet cravings like crazy (not so normal in week 3 of tx) and cramping, but it just happened 19 days ago, it's a week early AGAIN. And it's a super heavy flow...going to take a hot bath now!
Oh and going to http://www.gildasclublouisville.org/ tonight at 6 for orientation. It looks awesome, it's not close to me but I'm going to give it a go. They have a tai chi class at 7pm, I may stay for that, used to do tai chi a few years back in Australia and liked it a lot, not as much as yoga but I think the tai chi is better for me with a port and all, was told no funky positions with the port. LOL
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PhillyBird: Biotene is such a terrific help with funky tastebuds and dry mouth! I keep a spray bottle in my bag as well as the big bottle at home. Don't leave home without it
Sandy: Hope your tummy is better today. I know I get cramps and the runs a day or two after chemo. Thank goodness for Immodium -- glue in a pill! This week for the first time I had to take a compazine in the middle of the night the day after chemo. I haven't had any nausea before, so this was a first. I'm also getting minor nosebleeds almost every day -- I think my nose is just so dry that small blood vessels just pop. Anyone else having this problem? My oncologist knows and isn't overly concerned, but I'll talk to him about it again on Friday when I go in for #4.
Getting good press for my short pixie cut, but I always tell my friends and family that it's likely to be hair today, gone tomorrow, so they should enjoy it while it's there. LOL . I'm sure it will be a wrench when it really starts to come out, but at least I took a pre-emptive strike in getting it cut short first. I have to arrange for my hairdresser to style the wig I got so it looks more like what I'd like (spiky and fun) and less like the look the wig boutique lady likes (think 1970 bouffant helmet). I want to have it ready in case I need to use it -- but with this heat I think I'll probably go topless around the neighborhood and use scarves and cotton hats most of the time. Raiding my junk jewelry drawers for gaudy baubles to bling up the head treatments.
For those of you who haven't had a chance to go yet, you should definitely take advantage of the Look Good Feel Better classes. They are fun, and you get to play with a ton of free makeup that you get to keep. We got ours in a nice little red tote bag. It was really a mood lifter. Plus now I can draw on eyebrows without looking like Faye Dunaway in Mommy Dearest. LOL
In an effort to feel "normal" I'm heading out to the Monday night knitting group that hijacks a Panera's near where I live. Since I made a mad bunch of hats after I started chemo, I'm moving downward and making neck scarves -- lightweight ones that drape out of very lightweight yarns. I figure I'm going to up my game with makeup, earrings, blingy head treatments and neck embellishments. Gotta make as much lemonade as I can from the lemons I am dealt.
Tomorrow and Wednesday I work. I should probably refresh my memory on what I'm teaching so I don't make an ass of myself, but I'm in major procrastination mode right now. I'll review the software later...maybe.
I hope everyone has a great SE-free week! Depending on my white cell count (it was a little low last week, thus no Taxol) I'll have to see what kind of spa cocktail they mix up for me this week.
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Hi Ellenquilt---Re the bloody nose...I didn't get nose bleeds last chemo but the inside of my nose was so dry that it was somewhat bloody. I attributed it to the chemo killing off those fast growing cells. I'm headed to a Look Good class next Wednesday. Joan Crawford here I come. So you're headed to #4? Is that your last chemo? Do you get some time off for good behavior before you start radiation?I'm counting the days. Just had #2 last Wednesday and other than a weekend in bed am feeling pretty decent. I just notice the fatigue alot more. Feel like a wimp. I'm a knitter too and it seems sometimes that's all my brain is able to do. Been making chemo caps for the infusion center.
Someone referred to this as chemo spa. I've been calling it Really Bad Spa. But am hoping for curly hair at the end of the treatment. Oh, and no cancer. Hope all goes well for everyone.
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kk11 -- The herceptin treatments are being given now as part of the chemo treatments but after six treatments of Taxotere, Carboplatin and Herceptin, I will continue for a year with just the Herceptin. I've been told that Herceptin doesn't have the side effects like hair loss and mouth ulcers like the other two. Only time will tell. Have worked full time last week and this week up until my next treatment on Thursday and am still feeling good. Does each treatment get harder? I guess everybody is affected differently.
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khs113 - love your take on ChemoSpa being Really Bad Spa! Instead of getting our hair and nails done, well, our hair and nails are DONE. I've gotten a great bikini "wax" though. ;-)
I'm headed to Look Good Feel Better on Monday. I'm glad to hear from so many on this board that it is fun and worthwhile. Looking forward to my goodie bag. Will be a nice treat as I gear up for TC #3 on the 18th.
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khs113: I'm on 12 weeklies of herceptin + taxol and premeds. Then herceptin alone every 3 weeks for a year. I'll probably do the radiation after the12 weeklies are done, some time in October. I think he said 5x week for 5 weeks. Then the years of tamoxifen. So #4 leaves me 8 weeklies to go. The dosages are very low for the weeklies, which makes the SE less for now. The herceptin will triple when I move over to every three weeks so I'll have to see how that affects my energy levels and work schedule. I'm lucky that my boss is a friend and wants to do whatever she can to help.
I'm going to ask this week if they want me to make them some hats to keep on hand for those who might like one at the "spa." I like to knit and crochet cotton hats with brims and stuff on them like stones or pins or flowers. Fun stuff.
ANA, funny you should mention nails. The nurses at my doctor's infusion center are lobbying to get a manicurist on site. I think it would be fantastic! I know they are getting the large screen TVs in the fall with headsets for those who want to watch. If I have to get chemo, I'm glad I'm able to do it where I do it since the doctors, staff and ambiance are really friendly and cheerful. It makes things so much easier.
Enjoy your makeup session on Monday! They give you a good mix of products from different cosmetic companies that donate stuff -- from Maybelline to Clinique. A lot of fun. Plus brushes and sponges too. I feel like I'm 6 playing with my mom's makeup bag. LOL
Had a fun night with the Panera knitters and my friend Kathleen who is learning how to knit. Yarn therapy.
I have been knitting like a maniac since I was diagnosed -- it keeps me happy and I guess productive in a tangible way. Let me know how you like the LGFB class. I'm having so much fun with my bag 'o makeup these days.
I know what you mean about the fatigue. It sometimes just creeps up on me and zaps me with exhaustion. The heat seems to make things worse. I really gotta get my car A/C fixed before the school year hits or I'll be baking in traffic as I travel between my schools. Yuck. I hate investing in an eleven year old car, but I think I have no choice since I can't swing anything newer just now. And it still drives okay. Just hot.
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LMAO Ana @ I've gotten a great bikini "wax" though. ;-)
I went to the Gilda Club House in Louisville tonight, it was awesome, breast cancer support group was tonight, so I did that, probably 15 people there, very nice group. They do dinners, yoga, tai chi, all kinds of activities, if it was closer I would go several times a week. I will do the breast cancer group 2nd Monday of each month for sure.
I go to the Look Good Feel Good class tomorrow, can't wait!
Nite all and good luck to everyone getting tx this week..I'm on for Wednesday
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Well, all this feeling great seems to have ended......fatigue has hit me like a ton of bricks. No amount of sleep makes me feel rested, and my body aches. And chemo coming up on Thursday. I can only imagine how much worse it will make it. Still working full time and can't seem to do much else!
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Ellenquilt - thanks for the tip on the Biotene spray version - I have to get some since all I have is a giant bottle with Dixie cups in the bathroom.
From a lot of the comments, the BC journey is bringing out the creative side of us. I need to make some more beaded jewelry; I find it calming. Plus, I am looking forward to my Bead Fest class next Friday the 19th.
I will read the rest of the recent posts and get back to all of you later - today is round #2 in THE CHAIR.
Bye!
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OMG! The Chair! I was laughing so hard.
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Misswim-if you can get out and walk, i know it sounds painful but it truly helps. How's you vegetable intake? Darker veggies are the best. Spinach, beets, red cabbage, kale for example. If you can start eating them one a day you'll see a different as well. It sounds like you WBC might be getting low, fatigue can be sign. are you doing neulasta shots?
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Greetings ladies, Haven't posted in a few days. I was feeling like a garbage truck drove over me. I checked in to read what ya'll were writing, but didn't have the strength to interact. It is indeed comforting to be amongst kindred spirits.
I just had my weekly Herceptin dose yesterday. Not too bad. Scored lunch afterwards. Craving Liver and Onions, yummmm. I can't cook it, ewwwww, but if someone makes it for me, yeah! Had TCH the week before. Whew that was rough. Second one down though. This crap is getting old, and I still got 11 mo. to go.
I asked Onc. about Melatonin and he said sure! I guess it depends on each person though. It works for me. I had the grouchies for about a week. I asked for something for that, but doc. wants me to take melatonin and is chocking up the anger management issues to lack of sleep. I was really mean, and was snapping at everything. I don't think that is at all like me, but DH and DS would like to differ. I slept pretty good last night, so I will have to see how I react today.
I've got a bit of a head cold. Congestion, crusty bloody nose, just won't blow out though. Also some post nasal drip. Can't seem to work that out either. It is making me to gag. Disgusting SE's.
I want to attend Look Good Feel Better and now this is the second time it coincides with my chemo schedule. I'm going to call and see if I can arrive late. I want to look good and feel better!
I live in a rural area, and not much programs available for BC survivors here. You gals are very fortunate. I love Tai Chi. I've been walking a mile a day when I am up to it. Feels good to get some fresh air and listen to nature.
Thinking of each of you and wishing you SE free days.
hugs, pp
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pinkpalette: I think the goopy nose is a herceptin thing. I've been getting a bloody nose every day, and I'm dripping like a leaky faucet. Yuck doesn't begin to cover it. LOL
Try to get to a LGFB class -- it will really lift you up and we all need a good lift.
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PhillyBird, hope you are doing okay, my big chair day is tomorrow, round 3 of FEC, another one under the belt!!
I recommend the Look Good Feel Good class to everyone, if anything, the free makeup is awesome! I got some Mary Kay products, awesome cleanser and moisturizer. I'm not a big makeup person, wear mascara and powder foundation if any....but there was some great goodies and it's good to know how to put on eyebrows if I need to.
xoxoxoxo
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Hey Rabbit! I am super fine. THE CHAIR was just fine. No bruise from the blood draw; my neutrophils are great - that Neulasta is working wonders; no bruise from removal of the catherter from my vein. I had a nice view of the park and ate my lunch with the hubby while the T and C was going in. Water, water, water. I am a bit pumped up by the steroids, but that's a good thing - no nausea and no edema.
Wishing you a smooth chair day tomorrow!
I would love to do the LGFG live class and get the free samples, but in Philly, they are all scheduled for mid and late Sept. I will probably go to one, but I will only have one last cycle Sept. 20. So I watched a live streaming video that they had back in June and learned all the tricks and tips. I have been having fun with all my eye make-up. I have always been into eye make-up; hardly ever used anything else but a touch of concealer under my eyes. Use lots of Neutrogena alcohol-free facial moisturizer. Still have half my hair and loving wearing the bandana. No sign of loose brows or lashes, so far.
More later, ladies. Have a great evening and rest of the week.
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Rabbit I join you in "THE CHAIR" tomorrow. #2 of my TCH. I have had a bloody nose on and off since day 4 of my first treatment. All nose hairs are gone so now my nose is on constant drip. I'm hoping for great blood work and minimal SE's this round. Need to get to that LGFG meeting myself. It sounds wonderful. I am not a makeup person but would be helpful if I end up losing my eyebrows. Also going to ask if I can take the melatonin to sleep. Plus see if I can go back on my vit d since my level is horrible.
I was thinking the other day. After I got home from surgery everybody wanted to come by, help clean, cook, etc. Then it all stopped, almost like they wanted to come by to see what I looked like and they go their fix. Weird....when I still need the help cleaning or just someone to talk to no one is there except fo my awesome boyfriend. Think I'm going to go back and read posts again because I know someone posted there are people who help cancer patients clean.
Hope evryone with treatment tomorrow has a good SE free day.
Tina -
Good luck tomorrow, Tina.
You (and anyone else who is reading this) should also look into the Reach for Recovery program run by the American Cancer Society. They pair you up with a survivor in your area, who has a good attitude following her treatment, who had a similar diagnosis and course of treatment to yours, and who has been trained to volunteer to help you through your journey. I go to lunch with my volunteer and we chat on the phone and send emails and she is so understanding and supportive. She's not gonna clean my house, but she is not gonna get freaked out by anything I say or stop talking to me because I have this BC and all the baggage that goes with it.
Just my two cents.
Have a pleasant evening.
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PhillyBird- thanks I will have to check that resource too
Tina -
Luebbsgurl, there are 2 sources that I know of:
www.cleaningforareason.org and http://www.cleaningforcancer.org/ the first one didn't have anyone in my area for the next few months....the 2nd one said if their volunteers can't do it, they pay for a service near you and gaurantee someone within a few weeks. I have to take the application for my onco to sign tomorrow and then I should have a date set pretty soon.
Do you have skype? It maybe fun to skype with each other from chemo. I go at 8am. Anyone that wants to skype, I will have my laptop with me and my name is "pokertramp"
Good luck to us!!!!
hugs all
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The sore feet have gotten much better. I saw my onco today and there is nothing holding up my 4th and last treatment of AC on Friday. He is also not lowering any dosages due to the sore feet issue - which I read online that they do quite often for this issue. I am very excited to do this last AC and move on to the Taxol next.
Did someone in here say something about using Latisse for keeping eyelashes and eyebrows intact during chemo? I can't find it. I asked my onco about that today. He was all for it but wants to check it out more before writing script. I still have both eyelashes and eyebrows, but they are both thinned out. I am hearing that Taxol will tend to take them away and that will start in just over two weeks.
Has anyone purchased a wig from the TLC site? I just ordered a cheap one to have as a back-up for my nicer one. I wanted mine to be a bit longer, so I thought that $45 was an easy way to try something else.
Also attending a Look Good Feel Better next Monday as long as work doesn't swallow me alive. It almost did today! I am being handed off to a senior manager for the next two weeks and you wouldn't think with his level of management, but he is a huge micromanager. It should be interesting and very busy.
I am off to bed early to dig into work early and well-rested tomorrow. Good night and sleep well everyone.
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Nevermind on the Latisse info. I found a post. http://community.breastcancer.org/forum/69/topic/771546?page=1#post_2531302
Check it out if interested!
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Missswim, i agree w/ Dexxy. Be careful, it sounds like wbc may be low. Stay out of stores & make sure your kids are washing their hands too. I had to get 3 neupogen shots to bring mine up & I'm praying i can get chemo the day after you. I pray all is well with you.
Honey
Frankenboobs, great name by the way, wish i had thought of it. Don't woory about your hair when you have such pretty eyes for people to focus on! I have to admit, i am worried about the eyebrows, which will make me officially look "sick". Right now still just look like momma that can kick ass! :-)
Did any of yall get to checkout the caringbridge.org site or takethemameal.com i
recommended? Wanted some feedback if yall did. Like i said before, this is the 1 st time I've ever let people help. We're very independent, but it has been the most surprising & delightful part of this whole experience. also, it inadvertently put me in touch w/ other cancer survivors in the area that check in w/ me & is great. Also, let others know you need help w/ meals & cleaning. I kid you not...i have made 3 meals since 6/7.
Anyone loosing eyebrows/lashes yet?
I had a bad period( usually i'm normal) during my 1 st & second surgery & 1st chemo. I was
supposed to start during my chemo that got canceled on me last Friday, but it hasn't come yet. Is this normal, or did the a/c chemo through me into menopause? Will I get my periods again? I guess if i'm going to go through menopause, it may as well be w/ chemo! Kill 2 birds w/ 1 stone...woohoo
I did double check w/ my onc. & he said my 10 mcg of melatonin was fine. I also adked about acidopholis & he was fine w/ that also. As far as vitamins go, they only want me taking a multivitamin. I wish everyone in their office would give the same info, but there seems to be inconsistencies. Of course, evetyone neefs to listen to their own doc.
Sounds like a lot of us are in the chair this week, so prsy all goes well w/ yall & hope you don't have
any SE. Let yourselves be waited on like the Queens you are! :-) -
hi Honey, I am checking it out now...the blog one, very cool
Also very tired LOL gotta go to bed, big day tomorrow....nite again!
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J-bug - so glad to hear your feet are better and you are still on schedule.
Honey - I've been using CaringBridge since I was first diagnosed. It is great. Turns out I like writing and my friends (especially those out of town or not in regular contact) have appreciated knowing what is going on with me. They are also able to leave messages for me very easily. I have not needed to use the meal site - since I'm single, food is less of an issue.
One thing I did really early on is to create a "committee" of four very close friends. They know what I need and are in contact with our circles of friends. It is due to them that I did get quite a bit of food after the last treatment and have had some folks do some work in my garden. I'm not good at asking for help, but these friends are good at figuring out what I need. I know all those people who say "let me know if I can help" mean well, but I need folks to just do something and not make me figure it out ;-)
So tonight I finally started feeling like myself again. Day 13 after #2. I thought I was doing pretty well, and then just got this rush of energy. I can really tell the difference. It is a relief. Hope I can enjoy the next week that much more.
I'm still crossing my fingers that I'll be able to keep my eyebrows and eyelashes. They are not growing, but they are still there! I don't know if Latisse would help you keep them, but it should help them grow back in faster/thicker. I have a friend who is an optometrist and has used it - said it was great. Just $$$.
Oh, for those still looking for wigs - don't write off the cheap wig shops in your area. We have some shops here - mostly african american customers I think, because they carry lots of hair for weaves, etc. - that carry lots of wigs in the $20-60 range. I also went to a great costume shop this weekend. Got several inexpensive wigs and they had a discount for cancer patients. The person who helped me was wonderful. I got a couple just for fun (blue/green, red!), and a couple that look "real." I'm playing around with different looks and having fun with it now.
Time for me to sign off and get some sleep so that I don't use up all this newfound energy!
Best wishes to you all!
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Rabbit- I do have skype but am not taking my laptop. It is a pain in the butt to unhook everything since I work from home.
8 your time is either 6 or 7 here depending if you are eastern or central time. I go in at 9 to start blood work and dr visit before chemo. Long long day tomorrow.
Ana- that is the problem I had. Everyone wanted me to tell them what to do.....I was just thinking they should just do what they think.
Honey-I do have a caringbridge site. I like it because I can keep family informed and it is a nice journal of this crazy journey. I post very little to facebook and have told them if they want details they need to go to my caringbridge site.
I still have brows/lashes altho all other hair is gone. I have not gone out to get a wig. Since I work from home I figured I will just wear my head coverings.
Headng to bed and hoping for some sleep.
Tina -
Hi girls... Thank you to all for the kind words about my mastiff "Bauer"... He is hanging in there and not in horrible pain yet. I am enjoying every last minute we have together. I take so much comfort from all your posts.
Pinkpallette and Ellenquilt: I also have the yucky, crusty nose so I am thinking it does have to do with the herceptin.
Does anyone else have a "halo" wig?? I love mine. It is a wig w/out a top, just felt that goes around the head so it's not hot or itchy... I'm wearing it in my pic. You have to wear a hat or something over the top but I can't express how comfortable it is for everyday when I want to go out but want some sort of normalcy of having hair and not having to deal with the cancer looks... It cost 75.00 but was so worth it! -
Hi. Just a quick update since I havent been able to get on much.
I had my 3rd T/C today. It took 2 people to draw my labs and 3 to get my iv in. Since I have the chemical burn where my last 2 chemos were they were trying for a bigger vein and it took about an hour before they settled for a smaller vein on the other side of my wrist. My premeds were changed a bit and I have a 3 pack of emend at home with me now. According to the dr. when I was at the hospital on day 3 of my chemo my blood counts were really really low. She said I was prob so sick because they dropped so low so fast. I wound up on antibiotics and took all of them. Friday night I was at the hospital again with an allergic reaction with itchy welts and hives all over my body and some weird hard red knots in my hands and feet. Know one knows why but I am glad to not be itching as bad. Still have one knot in my foot but at least I can walk now. OK anywho back to today. I feel asleep during my chemo today and managed to keep my iv arm really still and propped up due to my iv issues. I woke up and my iv started beeping. A nurse was there and thought it was because my taxotere was almost done. Well, that was not it. I looked at the iv and the tape was peeled back and was wet. My iv had backed out of my vein but not out of my arm. The taxotere was leaking into my arm and on my arm. The nurse pulled it quickly and washed my arm but I am pretty sure I will have yet another chem burn. I am praying for no SEs this time and going to keep a postive attitude, I am 3/4 of the way there. I have been really tired lately and havent been on my comp much. Sorry I havent been more support on here lately.
Good luck to everyone and I hope everyone has a good SE free and stress free night!
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Dexxy- I am doing Nuelasta. We traveled this weekend to visit family. It was hectic, didn't eat or rest as well as I should have, and felt good Saturday, so overdid it. On Sunday, I felt yucky, Monday hit by a truck, yesterday a bit better once I got home, Half way through A/C and meet with the onc today. Otherwise have done really well except for some achiness and major tiredness for a few days after chemo. Also still working ALOT, so that doesn't help. Feel better once I get going in the morning, mid-day is tough. I need to start walking more....... I am sure it would help alot. Thanks for the advice! My husband travels 85% of the time for work so it has been very hard. He comes home and does all he can for me on the weekends and then has to leave again. Thankfully I have friends and family close, but it is tough to be alone. My son has had vacation and camp so he has not been home much either.
Jamie, you poor thing. I hope you are ok. I have a port as I have awful veins. I hope they are able to treat the burn and you aren't hurting too much.
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