August 2010...anyone starting chemo besides me?!
Comments
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Zenith - I was on STD for my surgery, I still have like 22 wks left before I would have to use the LTD. I really want to try to work through this. I only missed a few days during the other chemo round. Financially I cant afford to be out on STD, they only pay 60% of my pay. Oh well, I will have to see how it goes and decide from there.
Its good to be proactive, the compazine worked great. Also, how often are u getting the taxol? I got mine every week, so it was in a lower dose than every other or every 3 wks. That could also make a difference. You will do great, and I am around on here a bit reading if you ever need to talk. Hugs..
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Ugh...my lense just fell out of my glasses! How are we supposed to find that microscopic screw without our glasses?!!?
In any case...
Zenith and Kimmie: I have to chime in here. I, like both of you, am on STD and like Kimmie, I am at 60%. I am ok with that but in October I go LTD which means separation from the company. We pay for a LTD benefit that we cannot use unless we agree to be fired! Zenith: you are lucky to have LWOP. I work in a building with 300 people and they all start coming in sick at this time of the year because no one has sick time left. Also, just like Zenith, if I attempt a reduced schedule or to go back part-time things get more complicated because lack of FMLA time and establishing ADA time etc... .
I am also afraid becaues my oncologist told me, in no uncertain terms, my SE's/potential for sickness is going to get worse with each tx. This means, for me, December is when I will be most sick and I have no sick time left, no FMLA and will have to establish ADA time. All I know is October is it for me and that is very inconvenient. I want to be relaxed and not stressed about things while I let the chemo do it's work. Going back to work means stress from work, stress from people coming in sick and stress from all of that! Stress is just one vicious circle. Zenith, if I wish I had LWOP! I really do. I wanted a LOA and was told no! I have, however, spoken with 3 other people from the company who all received LOA after STD! Does this sound subjective?! My only options are get back or get fired...or so they think! Clearly I know there is a problem with this!
They will, however, pay COBRA for me once I am on LTD but once the LTD gods, who are relentless and dying to get you off of their payroll, decide I am no longer disabled (as soon as they can establish this, they will), there goes the COBRA payments compliments of my company and here comes the $450/month bill for health insurance!!!!!
Geez...the choices are just luscious!!!!!!!!!!
Kimmie: I make it my point to quickly announce everyone and welcome you to our group and I am glad that made you feel good
Your FEARLESS Leader..I think!
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Reminder on listing regimens:
You call can be as verbose as you want because, like I said, we are shutting the barn door next week! The lists will be reworked and I am going to be liberal in listing space for each person's regimen so tell me whatever you want and I will post it. What drove me bananas about some of the other threads was the lists looks a bit dissheveled and so much information clustered together....I did not like it. I want us to be able to go down and read what each person is doing and those of you that have rads after, let me know and I will put that in there also! Our list will be palatial!!!!!!
Liz0 -
I understand the stress at work issues, I havent been at my job a year, do not have FMLA yet. I was told if i was out too long from my surgery they would have asked me to step down or released from my job. What the heck does "released" mean... fired... I was out for 4 wks. I have been lucky so far, that they have worked with me. I do understand that they have a business to run, but damn to threaten to fire us when we try so hard to do what we need to, like that will make the BC go away faster. Sorry this is a pet peeve for me, I didnt appreciate being threatened with losing my job while going through my first round of chemo and getting ready for surgery. I didnt need to have to worry about whether I would have a job to go back to while I was trying to recover. I know that there are answers out there, I just wish I knew what they all were.
I am already on a form of Cobra. I am newly divorced (April). So, when the divorce was final I lost my military benefits. Was in the middle of my trial chemo run at Walter Reed and wondering what the hell I was gonna do. I pay 331/mo for my healthcare. My job offers healthcare, but I was worried with going with it in the middle of this mess. I felt that the peace of mind was better than the lower cost of my jobs healthcare, so I stuck with the Cobra.
Maybe in the next couple of years, the current administrations health plan proposals will be all in effect and we wont have to worry. But I am not gonna hold my breath.
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Zenith/Kimmie/Lizzie---I am in Canada so things are a little different--we don't have to worry about healthcare bills--except prescription drug bills which are covered either via company plan or government if you cannot pay. I am on STL until end of November---like Lizzie, my company has ALOT of people coming into work sick over the next couple of months as the fiscal closes, they don't want to use vacation time for sick time--so instead come to work sick--not really great for a chemo patient! After my STL is done, then you go on LTL and that lasts for as long as Doc and Insurance agree--BUT your company doesn't have to keep your job--just a position at same pay. I am really not concerned about that all right now---really couldn't care less. (Hopefully my boss isn't reading this!)--Honestly dealing with cancer is one thing but hearing the stories of financial struggle during treatment really breaks my heart.
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Rachel: I am doing ok financially but I just don't know why I have to lose my job to use my LTD benefit!?!?!?!
Kimmie: You job is covered by the Americans with Disabilities Act. Read it, know it. Also, believe it or not, that little treat was one of the last things George W. Bush did before he left office!!!!!!! I am not joking! Altruism?!? Whaaaaat?!
Liz
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Hi everybody,
Wherria, I think your dog Bixby is just beautiful. He must haveleft you with lots of good memories. Go ahead cry in the checkout line if you need to. My dog Ernie died unexpectedly in my arms three years ago and I cry even now as I write this. Our pets are a special gift in our lives and if we did not mourn them we would not be human.
Neulasta yes I give myself the neulasta injection. I am distressed this time that my hip still hurts 8 days after. For thos wondering about self injecting, I find it very simple, quick and actually painless..
OTC MEDS I am treated at a large medical center, the Seattle Cancer Care Alliance. Everytime I come in to see the Doc or the Nurse, this means everytime I get Chemo, I receive a printout of every drug they are gining me, that I am taking prior to treatment and still take and any kind of OTC med, vitamin or herb. The Doc refills whatever I need from the entire list, reviews what I am taking and any changes I might need. For those of you in smaller practices I reccomend you make up your own list so that you can accurately review with your doc. It is so easy to get mixed up with all these drugs on hand and needed for various symptoms. I think the SCCA is simply brilliant in the ways it checks and counter checks what I need and what I am taking.
I am continiing to have slightly runny tummy, then not so runny then back to slightly runny and gassy tummy pretty quickly. I am trying to eat lots of fruits and veggies and might get a bit carried away. I am also eating a little more meat than usual. Home made burgers on the grill so good and I am kind of craving meat in week two once again. I also just discovered PHO a vietnamese noodle soup dish that I eat Veggie with tofu. So good and gentle too. We get a box of fresh veggies and fruit once a week and it really helps me eat better.
HAIR Mine is little wisps now. I think cutting your hair short while you still have it all will be less traumatic than having strands of your beautiful hair drifting everywhere in the house. I had long hair for years and years, old hippie here, and can't imagine losing it so randomly. I also wish I had still had long hair and the ability to donate to lock of love like so many have done. Even giving a braid to your husband is a sweet gift with the right man.
HAT I have this pink bucket hat with appliqued flowers in the same fabric and color, it is okay I feel sort of normal in it. I have a cotton scarf that is cool and comfortable.
Makeup I wish I had a class. I look so facially bald/naked/whited out, with no hair around my face. Maybe the makeup would help with that.
Night and praying for a good night and bright day for all of us who are fighting this fight.
Ginger
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Hi Liz,
Thanks for putting all the work in our August forum! You rock! Please add my treatment regimen to the list. 6 rounds of Taxotere and Cytoxan every 3 weeks. 1 down 5 to go!
Hello Everyone,
The last 2-3 days have been hell for me. I drove to work Monday thinking I could work and as I was driving felt light-headed and thought it was a bad idea. I worked for about and hour and a half and then drove home! It all went downhill from there. I felt like I was out of my body, very weak, light-headed, nauseous, anxiety, and then had 24 hours of diarrhea. On Monday, I was concerned that it would not get better and wondered how I was going to tolerate 5 months of this. I am bouncing back today. Hopefully, tomorrow I will get back to work. I called the doctor today to get a new anti-nausea med. Phernegan did not work for me. I also have taken the lowest does of Xanax twice for a just in case I need it moment. Both times Xanax has not worked for me when I needed it. He gave me Ativan to help with both nausea and anxiety.
For those of you that have made the full round of your first chemo, does it get much better? Do you feel normal again?
Thanks!
Brit
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Had my 2nd round of TCH today. The first time, they ran everything really slowly and I didn't have any problems. This time, they started with Taxotere (as opposed to Herceptin last time) and they ran it faster and I had a reaction to it. I was sitting there feeling a little loopy from the Benadryl when I felt like my heart was heavy - that is the only way to describe it. At first I thought it was more Benadryl, but then my face started to get really hot and flushed, so I called over the nurses.
I had read somewhere on this site about someone getting up to go get the nurse and having a horrible issue, so I just called out to them. I told them my face was hot, and one asked if I had tightness in my chest. I answered yes and she said "OK - so we're going to stop this now." It was a little scary, and my friend who came with me got really scared. But a few minutes after stopping the Taxotere and adding more saline, I felt better, and they started it again, only slower.
So, it was another nearly 4 hour process because they did the Taxotere so slowly. I feel alright now - just a little tired and a dry mouth and throat which I remember from last time.
Neulasta tomorrow. Oh joy. Oh rapture. Oh bliss.
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Kimmie: I too am doing AC starting tomorrow. I have already done TCHx6 & then had surgery but since I was left with a lump with some cancer cells still remainig my onc recommended more chemo so here we go again. I'm feeling sad about losing my already very short hair and eyebrows yet again. Feel like I was just starting to look okay and now wham, they will be gone again in a few weeks. Good luck with the AC.
lisasinglem: sorry to hear about your reaction tot he Taxotere, I had the same thing happen to me. For my 2nd round they just gave me more benedryl and ran it slowly and then the next 4 treatments went fine with no reaction. it is scary but I'm glad they were able to complete your Tax.
So chemo starts again for me and I am wide awake thx to my wonderful steroids and am sad yet feeling resolved tot he idea that this was my choice this time to do more chemo and I have to just suck it up and tell myself that I made the right decision and that I got through chemo and a major surgery and am strong enough to get through this again. Logically I tell myself all of this but in reality i think i am still in deniel about chemo and am not sure if won't just hit me tomorrow morning when i walk back into that room. I am scared of the AC because I don't know what to expect regarding SE's. I don't want to feel like shit again; I just want to heal and move forward. Guess I'll have to wait a little longer for this to happen.
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BEST OF LUCK TO....
YOUNGMOMOF3 & KEEPINGTHEFAITH as they are starting treatment tomorrow.
I think it is very safe to say we all wish you the best
Your FEARLESS Leader!
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Welcome Kimmie. I'll be doing Taxol after FEC so any advice you can share on that is appreciated.
Zenith: I like your analogy of a horse with blinders. I too am taking it one step at a time, first things first. Get through surgery, get through tests, get through chemo... it's too much if we look at the whole picture!
Is anybody doing anything besides Neulasta? I know there are other drugs that serve the same purpose but all I read about is the Neulasta and it sounds like it is awful. Seems like we'd have another choice.
Off for a walk. We finally have temperatures that are bearable.
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Lisa - That was me that had the bad Taxotere reaction and only made it worse by standing up to get the nurses. That heavy feeling you are talking about is exactly how mine started, except for some reason it felt like it started on my stomach and moved up my chest. I tried calling out to the nurses but they didn't hear me so I stood up and got them and that was when my face got flushed. Anyway, I'm glad to hear that they took good care of you and were able to restart the Taxotere and get through it. The oncs at my facility were afraid to restart the Taxotere so that is why I've been switched to AC. I did a lot of research about allergic reactions to Taxotere after that and I did read that if you are going to have a reaction it usually happens at the second treatment (not really sure why) so I guess you were right on schedule. Most people then go on to do fine at subsequent treatments so hopefully you will too.
Kimmie - I'm glad to see you found us here, I was the one who posted on another thread for you to come join us over here. You and I both start AC tomorrow and KatherineNaomi also starts chemo tomorrow but I don't recall what her regimen is.
Ginger - You should look to see if there is a Look Good Feel Better class in your area. The website is www.lookgoodfeelbetter.org or you can call your local chapter of American Cancer Society because they are the ones who run it. Also I think Liz had asked why they give us free makeup, if we need some sort of special chemo makeup. The answer is no, we don't need special makeup but they do give some recommendations on being careful with your makeup to avoid bacteria contamination. Things like using disposable items like cotton balls or q-tips to apply the makeup and washing your makeup brushes every day (if you use makeup brushes). I think they just give the free makeup because it is a nice thing to do for women while they are going through cancer treatments. Sweeney, I'm sorry you got sick but your "Look Good Feel Like A Pukey Frosh" cracked me up!
Youngmomof3 and Keepingthefaith good luck today! You will do great and we are all cheering you on!
I'm getting nervous for my second start attempt tomorrow, fingers crossed for no allergic reaction this time!
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TIRED, TIRED, TIRED.
Doing 4 rounds of AC then 4 rounds of Taxol. I want to force myself to go out and ride my bike but wow. Feel like I've been hit by a truck.
The infusion itself was uneventful, but as the day wore on I felt like I was sleepwalking. When does it get better?
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Good luck to Keepingthefaith and Youngmomof3 today, JSW19, Katherinenaomi and Kimmie tomorrow!
Zachsmom: I'm doing TC, but the day of infusion I also felt really out of it. Sleepwalking is a good way to describe it. Day 2 I felt better as the day progressed, but now on Day 3 I've got the bone aches and the tiredness just has not at all gone away. I guess everyday will be different.
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Zachsmom - I'm not doing AC (TCH), but I have found that every day is different. I do try to get in a walk every day, unless I'm feeling too, too bad. I also found on the first tx, I kept waiting for it to get better and it really didn't for about 7 days. That's just me, hopefully you will feel closer to normal soon.
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Hi all,
I had a rough night last night. Had to go to the ER for hydration after cramps and diahrrea. My husband can't really miss more work so I waited til he got home and then we spent 6 hrs at the hosiptal while my siter (who worked all day herself) watched the kids. it was only my first AC so I am feeling discoraged (and afraid). I can't help feeing guilty about the kids too, my son (5yo) has been saying "I'm going to die" when he's upset, so I think my mom said something inappropriate in front of him. He has special needs and some probelms with anxiety and in the past I usually don't leave them unsupervised with my parentstoo long but this is harder since I am sick. I am worried about how this will affect them.
thanks for listening
Carolyn
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I had my first round of TC yesterday and the only real negative so far is the inability to get to sleep at bedtime due to the steroids. I looked at the Dexamethasone website and it says that one should not take this med. after five PM, I will take my two tabs. at 3:00 today and see if it helps. I'm a little foggy today but don't know if it is the TC or no sleep, probably a combo. No stomach probs yet, let's keep it this way. By the way, Tylenol PM didn't help. Enough complaining, reading some of the other posts her, I'm a lucky girl if one can be lucky to be on this site.
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RE: SE from second round - My first round of A/C was I guess a typical round. Got tx late Thur, felt fine on Friday ( so much I took care of my 1 yr old) but by Sat I was whipped. I slept all day Sat. Sun the nausea hit but kept it somewhat in check with Ativan, avacados and potatoes ( I know wierd). By about Tue/Wed I felt I was turning the corner and feeling less "toxic" and more "normal". That was round 1. Round 2 two weeks later is a whole other story! Again, tx late Thur. Almost immediatly I started to get a headache while in the chair. The nurse slowed the meds down but I think it was too late. By Thur nite I had a tension headache that felt like whiplash down my shoulders and back. Mind you this was BEFORE Nuelasta. Took my Claritan before the Nuelsta on Friday but the headache just would not go away. Called the oncall onc over the weekend and was told not to take any OTC meds. I probably had nausea as well, but the pain from the headache trumped it. I slept all weekend and still felt like crap come Monday. DH stayed home to take care of our son while I tried to bounce back. Called the Onc who said to take Ibuprophen 800mg for the pain. By Tuesday, I muddled my way through barely. By Tuesday night the nausea set in and here we are on Thur and I still have it. Back to the avacados and potatoes. I am a bit discouraged that the rules of the ballgame change. I was all ready for a repeat performance to round 1 and round 2 was so different. Sorry if this isn't what those not yet into their rounds wanted to read, but I guess it's just the way BC is - different for everyone and everytime.
Shaved my head - AAAHHHHH!!!!!! It is soooo much better than shedding like some dog in the summer. No Cal we are getting 108 temps so the cool breeze from the ceiling fans really feels good - and wierd : )
Lastly, I had a friend send me a product she swears by... Brian Joseph's Lash & Brow Conditioner. She is going through chemo as well and has not lost her brows or eyelashes. http://www.brianjosephs.com/html/lash_brow_conditioning_gel.html I started using it just before tx2 so don't know if it really does "save' the brows but it's all natuaral so again - why not. FYI.
Going for my LGFG class Monday. This should be a riot since I'm 42 and don't wear makeup. I wouldnt know a blush brush from an eyeliner. I'm more interested in how to wear these darn scarfs.
Hugs to everyone beginning, in, and recovering from tx.
Michelle (42)
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About me: THE PORT IS IN!!!!! GETTING CLOSER!
YOUNGMOMOF3: can you PM me your exact regimen? I was able to get some of it from a post last night but would like to give you full credit for this luscious process we are going through!
Liz0 -
MICHELLE- I feel for you. I'm in the same boat (TC though) and round 2 is different and I'm NOT liking it. Didn't have nausea before. Tension headaches don't seem to go away, tired, but sort of strung out. Unable to sleep easily. Yuck. And my mouth feels icky. Sort of like when you use that awful Arm and Hammer Super Whitening paste that basically takes off the top 2 layers of everything in your mouth.
Liz- Yay for Port LizzyMack!
ALL- Does anyone have their mother/sister/loved one come and help out the week after chemo? We've been doing this, my dear mom has volunteered to come and has done it twice now. First time was super helpful, 2nd time was just more stress. Am now wondering about the third go round. Any insight, if you're already there?
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ZENITH: My onco goes with Neupogen and I won't know if and when I will need to use it until after weekly blood tests. If it is needed I will then be instructed as to how to give myself the shots at home. My DH said that is the one thing he can't do for me, wimp. Daughters-in-laws have offered to do the job but no son volunteers yet. I'll just look at it as something within my control, a good thing.
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LIZ: Congrats on the port, it will make a huge improvement in your infusion regimen. It also is a real reminder that the chemo is a coming. Best of luck to you and all that you do for this very supportive thread. I'm sure I speak for all of us here that this group has made this a much easier journey even if I'm sick of the term journey. Fricken journey.
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CKPTRY - I hope you are doing better. I am so sorry for your 5 year old. Do you have a counselor for him? Does your oncology office have a social worker? It might help to let him discuss this with a professional - I know just one more expense - but maybe ACS can help? I was completely discouraged on day 3 of my first tx with back pain so bad i stayed in bed or the lazy boy. it went away on day 4 and that was the worst SE. 2nd was today and i am drinking water as much as possible. hugs, zenith.
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Sweeney: I purposely do not ask anyone to come over/help because I am very independent and people get on my nerves! I try to surround myself with people who are not overly concerned with the connotations of the "C" issue at large. I really work very hard to protect myself from negativity and stress. If it is turning to stress for you, tell her you are all set and you feel confident about your ability to deal. Ensure her if that changes, she is the first one you will call!
Onemonga: Forget journey...it is a march through hell on our way to better health!!!!!!! I try to use flowery words to deceive myself, however!!!!!!!! Speaking of control, this "joker" who is trying to work his way into my life broke my lawnmower so I would NEED him to come here and mow. Well, you all know my mower story so that joker called last night to say he would be up to mow my lawn soon....I said "no you won't; I am all set, thank you!" Stammering and did you get it fixed = no, and you are no longer allowed in my shed...STAY AWAY!!!!!! More importantly, however, is the feeling that chemo takes over so anything we can do to denounce it's power, albeit small things like mowing the lawn, keeps us feeling as if we are impervious, not the disease and the psychological effects are far-reaching. Do whatever you can to feel you are in control as it is the healthiest thing you can do right now.
CKPTRY: I am sorry about your son and how someone has told him something about death and cancer. I don't have children but I do have 10 nieces and nephews and 2 great nieces and 2 great nephews (yes, I am 40 and the youngest!) but unfortunately I don't have any practical advice. I do remember being in the waiting room when my BIL was getting his operation for lung cancer and I think it was my nephew Jonathan who was there. He was really young at the time, around 5, and he insisted on staying with my sister and I in the waiting room. In any case, I remember him talking to me about being worried his dad was going to die. I explained to him that there are many, many things that cause death, like car accidents and surprising events but that sickness can be managed in the hospital and with appropriate care etc... I remember holding his hand, walking around and talking to him. I really did not know what to do but I wanted him reassured. My BIL is still alive today, 12 years later. It was tough to get the kids to understand, however. I wish you well with that.
Crying: I think I had one breakdown since this started and that was while watching the View and then George Lopez came on and he had me laughing in no time. I think I mentioned this to you all before. In any case, while waiting to get the port put in, I started to cry! Out of nowhere. A male nurse calmed me down and all I could think was what the heck is wrong with me and why am I so whiny (aside from the 10k lb gorilla in my life = bc!) and then, a few moments later, I found out that monthly gig had arrived!!!!!! I thought I was breaking down but, to be honest, lying on that gurney today, it did get to be a bit much all of the sudden! I need a restful weekend.
Your FEARLESS Leader!
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Liz-
Congrats on the port and moving forward. My freakin' burn is still not healed and I am very anxious to get this port/chemo thing started and ended. Enjoy the weekend.
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Adey: what do they say about the burn or how much longer? Geez...I would be getting anxious. It was really easy-20 minutes- and I was awake and alert for the entire process. I hope you get your port soon. You have a good weekend also-
Liz
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Zenith,
Thanks, that's a great idea. There was a SW at the hospital who saw me and gave me a bunch of children's books at my preop visit when I left a message asking if she had any advice about talking to the kids. I'll give her a call tomorrow. Aidan has a psychiatrist and a psychologist but they are both away until after Labor Day so that's too long for him to sit with this. The hospital SW probably has alot of experience with this sort of thing.
take care
Carolyn
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lizzymack1,
thanks for sharing about your nephew. I'm glad things worked out well for your BIL.
Carolyn
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Michelle - I have a friend who said the worst treatment for her was the second one. I'm hoping that is true! I'm sorry you had such a rough time - Monday is crouching at my door for treatment #2. I'm scared...trying not to be.
Hang in there!
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