Chemo June 2010
Comments
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My former husband's little 4 year old girl (whom I very much adore, she's a sweetie) had not yet seen me since I lost my hair until yesterday. We had kind of prepared her for this just by talking about the fact that I was on some medicine that was going to make my hair fall out. My ex had to drop something off for me at work and had little Ali with him...I had forgotten about my scarf laden head and she just kind of gave me a sheepish grin when she saw me....I let her peek under my scarf and told her "yep, it's all gone for awhile, but it will grow back". She just gave me a big hug and said "I really like your earrings"....gotta love kids!!! She brightened up my day!!!
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thats great Janna!!
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julia2- Your account of how cavalier they are about administering your chemo would concern me too. As you like your Onc, I would tell him exactly what you told us, especially about running out of time and having to return the following day to complete your chemo!!! That is what overtime is paid for! My last chemo got started 3 hours late. As my lovely, focused, favorite chemo nurse was tending to me, she shared that she was trying to leave on time (it was Friday on the 4th of July weekend). I asked if someone else would be "finishing" with me. She responded "Oh no! I am here till it is all complete, that's just the way it is". And by the way, she did NOT crank it up to a faster speed! These are the angels who hold our lives in their hands. You deserve to be tended by angels too. Having said all that, if you are truly allergic to the chemo and they want you to change, there is no amount of slow or fast administering that will help an allergic reaction. When someone is allergic to meds, the reactions tend to be more severe each time. For example, with Penicillin, initially you can have a rash. Second time you can have hives, Third time your throat can swell shut. The body becomes more and more "reactive" each time the allergic substance is given. Do talk with your Onc about the nurses. I bet he doesn't even know what is going on. I know it is awkward and scary reporting these nurses (since they are pouring poison in our bodies and you have to see them again). Perhaps your Onc. could arrange to have a particular, very good chemo nurse (supervisor?) administer you EVERY time? Also, if they won't stay after hours, definitely schedule your chemo first thing in the morning. Having to come back because they were closing up shop is just wrong, wrong, wrong!
grneyed- I live in a NYC apartment with DH and my son. I am always wishing for some alone time! Hence the sign Ikeep wanting to paint for my bedroom/studio "No one gets in to see the Wizrd, no way, no how!"Having said that, after a few short hours alone, I miss them like crazy and await their return. I say just give in to it and indulge in things you normally can't Rent those stupid chick flick movies that DH won't watch. Walk around naked eating ice cream out of the box. Don't bother to wash your hair (just kidding!). Before you know it, he'll be back and you are going to wish for solitude. By the way, tell your UPS man we all love him!
rs711- Thanks for the nutrition reminders. I get so caught up in all this medical nonsense, I forget to optimize the things that I DO have control of!
All you ladies who are headed for Taxotere. I remember reading somewhere around here that Oncs are recommending taking Glutamine to prevent neuropathy which is a known SE of the Taxanes. I also think they said you had to load up on this supplement for a while before starting the taxanes in order to have it work best. I would definitely ask about it. I find my Onc is not very interested in vitamins, supplements etc, even though research is showing true benefit. When I do bring it up, she acknowledges that they might help and she has no objection.
dsa deb- I'm with you about the weather. I am SO looking forward to cooler Autumn days so I can get outside again. I had a thought about your prickly hair problem. Sherry suggested Nair or Neet for my numb lymph node-less armpit. I know these hair removers are made of chemicals, so they might irritate. It might be worth a small "patch test" experiment to see if it removes the stubble and doesn't irritate your scalp. I know you are used to living dangerously by now!
We are off to a festive book signing at a restaurant. A friend's book was just published, great cause for celebration. Blessings and hugs all around!
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janny-I just saw your post. It warms my heart to see how pure children and some adults are. Love is truly blind (even to bald heads etc...). I have come to view bald heads a truly beautiful, especially after knowing so many strong, courage ones. I also commend you and your ex for being so grown up and civil. I see so many divorced, vicious, petty couples. Of course their kids get dragged into the fray. How wonderful for all of you that you can genuinely care for each other.
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DesignerMom:
I have a glutamine fact sheet/treatment schedule I got from my Onc. You start the glutamine the day FOLLOWING treatment 3 times a day for 3-5 days. The dosage is 3 teaspoons dissolved in warm water or juice (the stuff clumps in cold liquid).
I scanned in the fact sheet but I can't figure out how to attach it to a post here. If anyone would like a copy, pm me with your email address and I'll send it to you that way.
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Thank you DesignerMom and Poppallicious for your recommendations! The Prilosec and Prevacid is not working for me at all so we are upping the ante and going for a prescription strength to reduce the stomach acid and I'm going to the health food store in a few minutes to get some quality acidophilus. I didn't realize that the live probiotics needed to be refrigerated but it makes sense. Thank you so much! I am doing the small, frequent meals with high protein and that does help. I'm also taking B complex to help with some slight transient numbness and tingling which seems to be helping.
As far as the prickly hair thing goes: I'm looking pretty much like a cross between Fire Marshall Bill and a Rhesus Monkey!! It might be time to do a close shave and even things up a bit. The lint roller is working like a charm
Thanks for that tip too. Today the insurance check came in for the full amount of the wig. WooHoo! especially since I haven't worn it yet and don't intend to until this NY heat/humidity gets hold of itself which will probably be in Sept./Oct.
Is anyone having adverse effects with the Neulasta shot? That's a trip in itself once you add it to the chemo. Geeezzz.
Getting a bit anxious for round 3 on Monday already...what's up with that? I guess I need to get busy but it's to hot and not enough energy.
Stay cool and hang in there everyone!
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Ladies:One week after AC#3 - I get the last one (yeah!) on Thursday. Feeling surprisingly good - better than I did on round #2. I think it's becasue I have been really laying low - except for going to work (with a few days off), I just sit in the house. It's too damn hot here to go out, so why bother? Last week, I was a little weepy, but I think I needed more sleep, so I took sleeping pills (that the dr. had given me) and got extra sleep and it helped. Thanks God for macaroni and cheese, it's all I eat the first four days, that and yoghurt. I also found Vitamin Water, which is a big help. Haven't noticed any hair growth. Hang in there- hope everyone has a restful and happy weekend.
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I am way behind on this thread. LOL! I am still in a chemo fog. Been here since Wednesday, the day of my treatment. My pain from the Neulasta shot is almost gone - thank goodness. I am just being a big loaf on the sofa. My husband made me a Muscle Milk smoothie with mango and orange juice. It was pretty good and had lots of protein. My hair is still not all gone. I washed my head with a washcloth on Monday and a lot of the hairs fell out. I still have a bunch of hair on the back of my head, which is driving me crazy when I lay down.
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Okay, here's a bad joke on the no hair thing...I was at work on Thursday, and it was a particularly "hairy" morning. (Okay, everyone groan at the bad pun. I am full of them!) I was wearing my wig that day. Someone asked me how I was doing with the hectic pace we were having that day, and I said, "Oh, pretty good so far. I'm not pulling my hair off yet!" It took her a second, then she got what I said and started laughing.
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Kaycee-I'm not sure, but I think if you click on the little icon that says T (run your cursor over it and it will read "paste as plain text") you should be able to attach your Glutamine sheet. The icon is one of the ones at the top of the "post a reply" box. Technology!
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Hi all - I have been "lurking" and really thinking about how fortunate we are to have each other. I tend to catch up on your posts during those 4AM - can't sleep any more - wakeups. I am always comforted by the fact that I am not alone in my feelings and various SE's. I am due to have my 3rd A/C on Wednesday and am dreading it. I think I put up a good front though b/c my DH keeps telling me how great I am doing. Sometimes I wish he could just step inside this body for the 7 days after treatment.
I had such bad indigestion and heart burn after #2 that I was given a prescription for Protonix and it really helped. I resisted calling about the problem but now realize that if we speak up and tell the Onc about the bad side effects, we can often times get some relief. I have always been a "you can take it" kind of person - avoiding the meds but now I realize that this BC treatment is different and we need to advocate for ourselves. I have been resisting the Ativan but also know that I will not be in decent shape for the next treatment if I don't get a few good nights sleep. So hopefully I will not be reading your posts tomorrow morning at 4 AM but closer to 8 AM. To those of you who are working and taking care of small children - you are my hero's. My granddaughters 3 & 5 came to see me last Monday and after 2 hours I was totally exhausted and so happy when their mom came to pick them up.
I do have a few things to look forward to in the next 4 weeks, so I am going to try and concentrate on those - my sister, who lives in Munich is coming to visit - we are supposed to go to a Boston Pops concert in Tanglewood MA that first week in August and have tickets to see West Side Story in Manhattan the following week. I just hope I am feeling up to both of those events.
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Hey ladies! I think the fog is lifting...I've been reading and following along, but forgot everything I wanted to post about!
Chey--Thanks for posting about what the nurse said about Taxol. My onc wants me to do weekly, but, as I've said before, I may not be able to due to the neuropathy I already have from chemo last year.
Julia--> I would definitely consider switching! Esp. if you like the other onc you saw also. My nurses are angels and I can't imagine any of them treating me that way! I agree with Designermom though too, that you should let someone know.
This is the time last round that my temp started to go up, and I had the problems with low bp, and low wbc. I'm trying to stay more hydrated, and I will be careful of germs! I am hoping to be able to go to the store with my dh today though, but not sure if I'm up for that yet. Last night we went for a drive and a DQ--seems to be our little "date" these days! Felt soooo good just to be out of the house! My family is getting used to my bald head--sometimes its just too warm for the scarves. My 18 yo dd likes to touch my head and laugh at me! Don't know what I'm gonna do when she goes to college next month.... *sigh*
Prayed for everyone in this group in the wee hours of the morning when I couldn't sleep. Hope everyone has a GREAT day!
Tina
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Kaycee, I would really like the fact sheet on glutamine but I am too dense to figure out how to pm you. Thanks,
Mimi9186
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mimi9186-Okay, if you can do chemo, you can PM people. It's a great way to have more in-depth conversations. It's just 3 simple steps. Find Kaycee's post. Run your cursor over where it says "Kaycee wrote" (it's blue) Click your cursor and it takes you to Kaycee's profile. In the upper right corner it says "Send a private Message". Click there and write your message in the box. Then click "send message". DONE! Then keep an eye open on the "Private Messages" tab at the top of this or any page. If you have a PM there will be a little pink number that indicates how many PMs are there waiting for you to read. Click on the Private Messages tab, read your message and reply to it right there. I have a hate/love relationship with technology. I sure am grateful we have this forum!
tmarina- I hope you are going to be totally surprised and breeze right through the rest of your tx with NO SE. Nothing like DQ with your sweetie! You are in my prayers too.
lizzyanne- Good luck Wednesday. Enjoy your sister's visit and don't push yourself too much. She will understand if you need to take a short rest. Little cat naps can help your energy SO much. Try to keep them short , like 30 minutes and they will not disrupt your sleep at night. I know Munich well, my grandma lived there and we visited and lived there when we were kids. By the way, I am mom to an 11 year old and 3 and 5 YO kids wear me out too!
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mimi I sent you a PM with my email address, just in case. If you send me an email I'll send the glutamine sheet back return mail.
DesignerMom, thanks for the tip on the copy as plain text. Unfortunately, I scanned the document as a .jpg so I don't have the option to copy now. I'll get the original out as soon as I get organized (ha!) and try to scan as text so I can just copy it here. It would be easier for everyone for sure.
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DesignerMom -- I'll try the cancer math site. The onc did say TC and AC are pretty much the same. But I'm worried about the AC's possible damage to the heart.
Meliss -- I actually asked the onc about CMF when she was first told to get TC, the main reason being the hair preservation with CMF. The onc, however, said no because of the aggressiveness of the cancer, a grade 3, and oncotype score of 56.
dsa-deb -- Thank you and please check you pm.
cheyenna -- Thank you about your tips. I just pm'd you back.
Thank you ladies for your advice and encouragement. And for those of you who had neupogen shots (Neulasta is not covered by insurance), did you have to self-administer the shots?
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Apparently I typed this thing out before, so for those interested, the Glutamine handout text from my oncologist:
Glutamine is the most abundant amino acid in the body. It is found in blood and tissue, and primarily formed and stored in skeletal muscle and lungs. It also serves as an essential nutrient required by the mucosal cells of the colon. It enhances nutrient transport and facilitates the enteral absorption of electrolytes. In one study it appeared to be a simple and useful measure to increast the comfort of patients at high risk of developing mouth sores are a consequence of intensive cancer chemotherapy.
Glutamine has recently showed evidence of helping to relieve some of the side effects associated with the following chemotherapy agents.
Taxotere, Taxol, carboplatin and Cisplatinum induced muscle and joint aches as well as the numbness and tingling in the fingers and toes.
Camptosar-induced diarrhea
Mouth sores associated with intensive chemotherapy regimes
High does methotrexate induced bowel irritation and inflammation
A healthy person does not require supplemental intake of this aminio acid, but certain diseases and medications as above result in a deficiency.A traditional diet contains less than 10 grams per day. During illness or stress to the body, a need for glutamine can increase to 20-40 grams per day. Supplemental intake of glutamine has been found to be very helpful in preventing or easing these symptoms.
Glutamine comes in a powder form and is mixed with juice or water. Avoid mixing in ice-cold liquids. The recommended dosage is 10 grams three times a day, or:
4 teaspoons three times a day for 3-5 days beginning the day after chemo.
No side effects have been reported with the intake of supplemental glutamine. It is not recommended for patients with severe kidney or liver disease.
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About the glutamine - I haven't decided whether to take it or not yet - my onc is very uninterested in supplements and doesn't think they will help much, but I may decide to take it anyway.
Just FYI, for anyone considering taking it - I googled "glutamine chemo" and found a few sites that talk about the benefit of glutamine, but they also mention that it "might stimulate the growth of some types of malignant cells".
Here's another quote:
"However, two reports state that since tumors require glutamine, providing dietary glutamine may stimulate growth in some tumors. Myers addresses this issue by stating that while glutamine is needed for tumor growth, it also plays a critical role in the ability of our body to defend itself against cancer. Myers continues with a caution to not treat yourself with glutamine without first discussing this in detail with your doctor."Off to have my final AC tomorrow!!
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kittycat: what is the recipe for that Muscle Milk smoothie???? i saw the ingredients you mentioned but; how much of each? it sounds delicious...and, even something simple that i could do since i have a very strong aversion to cooking these days! talking about your hair----i finally broke down this morning & stood in the shower for what seemed like hours ""'pushing"" what was left of my hair off my head! it looked like someone had thrown a little 'beanie cap' on top of my head that was black in color (my natural hair color). so, i decided that HAD to go----after what i thought was long enough under the water, i took a razor, some shaving cream & did the job. however, i still have 'fuzz' hair that either my razor missed or i didn't know what i was doing. regardless, it feels so much better & am hoping that i don't have to worry about the prickly's swirling around everywhere!
designermom: how's the nyc temp today?? hope you're staying inside!
chey: are you ok after this last treatment--wasn't it friday??
hope everyone has a great afternoon----stay cool & well!
deb
tina: glad to see you're back among us! sorry about your last treatment/fog, etc. how on earth do we manage --- it's because of our DQ sounds very appealing right now...just like that muscle milk smoothie. i may have to make a drive across town to our dq before the evening---and certainly before wednesday's treatment....by then i won't remember what dq even is! and, i'm with you---praying for other people takes my mind off of me & puts the focus on the needs of others even tho i may have no real clue about their circumstances other than what is spoken or shared, such as on this thread.
lizzyanne: i'm up for my 3rd A/C treatment this wednesday, too.....i dread it like the plague! am hoping that 3rd time charm tale is really a truth just waiting for me!! we can share war stories afterwards, altho it usually takes me at least 4-5 days to come back up for air (this thread/anything!!) after my treatment.
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LuvUMom-->last year while on another chemo I had to do my own neupogen shots. I did them in my stomach--plenty of tissue there, lol! Even though I was familiar with giving shots (I have a diabetic daughter) my nurse went through the whole training, and then watched me give myself the first one. The first ones I did at home I was nervous, but it got easier. They are supposed to be kept in the fridge, so make sure you take one out about 30 min. before giving the shot so it can warm a bit. The colder it is, the more you feel it. I had alot of bone/back pain with them, but my onc. kept telling me how unusual I was. But I would still recommend taking some ibuprofen or tylenol before the shot, just in case. When the pain was bad, I alternated the 2 meds thoughout the day, and it helped alot. I also had the option of doing the shots at the hosp., but that would've meant making the trip 3 or 4 days in a row. (Actually, the shots worked so well for me that I usually only needed 1 or 2.)
Latte-->congrats on the last ac! I'm one week behind you!
Just had a nap--hoping to "wake up" a bit now. Stomach is queasy today--taking compazine just in case! The heat is down a bit here in the Minneapolis area, so I'm going to go sit in the shade with my dh.
Tina
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I was June 09 chemo starter and just wanted to pop in and say hello and you're doing great!!!
I know there are days that are harder than others, but know that this to shall pass. There are times the road seems never ending, but there is an end and before you know it you too will be cheering on someone else going through the very same thing.
(((HUGS)))) to all of you!!!
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Jenn3: Thanks. I needed that today!
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LuvUMom: The research that I did on various medical publication websites claimed....T/C was better in Grade 3 (aggressive) cells. My B.S. kept referring to T/C as well and I absolutely have the highest regard for his knowledge and trust him. Unfortunately, the Onco, who I can take or leave claimed it didn't much matter........My research and a second opinion said otherwise. My oncotype is 26... You will make the right choice and when you do, don't look back. I wish you much luck!
I agree with all that TMarina has said with the Neulasta or Neupogen shot. Remember to take it out of the fridge 30 minutes before. I have to take it within 24 hours of each chemo round or I've been told I would end up in the hospital. I believe that each Onco is different however. If you have a nurse friend, I bet she would be happy to give you the shot as well as your internist or family doctor.
Kaycee: Thank you so much!!! I sent you an e-mail. I am going to take the glutamine regardless of approval. Like Latte, my Onco seems uninterested in supplements. It seems that if I present the facts and have legitimate information to argue, all of a sudden....., it's alright to go ahead and try it. So far the B-Complex seems to be working to decrease the numbness and tingling. I guess Mr Myers never experienced bone pain or neurapathy, but I appreciate the facts.
Thank you for all the information you all have provided. I'm on my Decadron high and getting ready for #3chemo. Good Luck to all of you in your chemo adventures this week!!
Thank you Jenn3 I needed that too!!!
cyber HUGS
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luvumom: check your PM
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I got the Muscle Milk (100 calorie drink). It came in a pack of 4 at Walmart and looks like a big juice box. I got the vanilla flavor. I hated it alone and refused to drink it. My husband poured some of it in a blender with ice, orange/mango juice, mango and banana. It tasted good. I'm finding that really ice cold drinks taste best while I'm in chemo fog.
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Hi ladies:
just checking in after my 3rd chemo treatment on Friday. Side effects are setting in quicker and more intense. I had to get Benadryl by infusion and left the hospital so loopy I couldn't even walk. It's been a tough few days, Very emotional, weird pressure in my head and just generally unwell. Hope it ends soon.
That was my last FEC100 treatment, next it's 3 Taxotere/Docetaxel (and Herceptin for 14 treatments)... I hope it will be better than my FEC experience, but after reading some of the previous comments... a little scary!
My comment on the Neulasta: my hubby injects me the day after treatment. Some bone pain in the following day, but nothing serious.
Designer Mom: thanks for posting the step by step on PM... I am technologically challenged and appreciate the info!
Sorry to hear about everyone dealing with hot hot weather... one of the few charms of living in the north: It's rarely too warm. I have been able to go for a walk in the park every day, though sometimes I go pretty early to avoid the sun. I swear it helps keep my sanity.
Well ladies, this sucks. But it's so great to share the good and the gripes with you all. Thanks!
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Hi All,
Just jumping in. I just joined this group today. I am facing my 4th AC Wednesday and then on to 4 Taxol spread over 2 months. The SE's for me have been nausea, fatigue, metal taste, sleeplessness and general crankiness. Saw a neighbor who is a microbiologist and teaches premed classes yesterday. She said I looked good and most older women would be"half dead" by now. I guess that's a compliment
Of course I am anxious about 4th AC. My worst days tend to be about 4 days to 6 days out. At 7 or 8 days things lift but I am always tired.
Really appreciate hearing everyone's stories. I have a 19 year old son, a fifteen year old daughter and a husband who is a candidate for sainthood. I work as a teacher's aide and will probably start the school year late once I have fininshed Taxol. Once suprised me when she told me Taxol would make me feel to ill to work. But, maybe not working is better in the long run. I will be working in a first grade classroom afte spending three years with older kids and am a little concerned about the germs. Better turn off computer I hear thunderstorms in the distance.
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JFV--> good to hear from you! I, too, am a teacher's aid (we call them "paras"). I work with kdg. and 1st grade, and do lunch and recess. I have my last ac next Monday, then start Taxol/herceptin 3 weeks later. I don't plan on going back to work until I'm done with Taxol. We have ltd, so after 90 days I will get 2/3 of my pay--it helps! Last year I had chemo also, and didn't work until about 6 weeks after last one. Lunch/recess is too hard when I'm not feeling well, and I didn't want to be out in the cold! The young ones are VERY germy, and that's another reason I don't want to work during chemo! Sometimes I wish I had a desk job...young kids take LOTS of energy!
I am anxious about my last ac, yet can't wait to be done with it!! Hope all goes well, keep us posted on how you do.
Tina
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Well, here we go! I'll be on "temp. watch" for the next day or so---temp is now at 99.4 (my "normal" is mid 97's). I know it goes up everytime my wbc drops low, but I can't help but worry! Anyone else have to take antibiotics more than once? I worry if my fever goes up, and I just had an anitbiotic last round, what will the doc do this time, just give me a different one?
*sigh*
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just got back from my 4th AC - Yay to be done with that, and move on to the next poison...
had terrible trouble with my port - 2 weeks ago i used it for AC for the first time and it was fine. when i went in today, the nurses all tried to find it, and apparently, the part where they have to stick the needle was turned around and facing my chest!! so they had to push and prod for ages until they finally managed to get the needle inbut they weren't sure it was in the right place, and so they gave mehuge amounts of saline until they were sure it was ok to continue. so a 2 hour chemo visit took 5 hours...and i have to go back to get the port fixed by the surgeon again...
nothing is ever simple with me :-) off too bed now for the next few days...
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