Getting my port today [Archive] - HER2 Support Group Forums

Sheila

04-30-2008, 07:32 AM

Kathy
I had my port put in (BARD) back in November....it has made my treatments so much better, after 4 years they were having a problem finding a vein. I had it in the morning, then went straight up and had my Taxol, Avastin, Herceptin...no problems. You will do fine....check with your Dr. or infusion nurse...some do not want you to use EMLA cream depending on the type of port...I see some people get a glove full ove ice chips and numb it with that...maybe I have a high pain tolerence, but I don't think it hurts at all when they access mine....or maybe I have really talented nurses!!!! Good Luck Today!!!!!!!!!!!!!!

Bill

04-30-2008, 10:44 PM

Good luck with your port surgery, Kathy. I'm sure you will be glad you got it. Sheila, I'm surprised you toughed it out for 4 years. When Nicola went in for treatments, they sprayed some type of aerosol spray over the port to numb it any she never felt the stick.

Mary Jo

05-01-2008, 04:08 AM

Morning Kathy,

Well, by now your port should be in and I'm sure all went well??http://www.her2support.org/vbulletin/images/icons/icon7.gif I can't relate to the port as I never had one but I've heard they are convenient and nice to have.

Good luck to you and may all go well for you.

Mary Jo

swimangel72

05-01-2008, 07:00 PM

Thanks so much everyone! I researched the pros and cons of the chest port vs the arm port and decided the chest port would be better for me - I have enough problems with my right arm and didn't want any pain or problems in my left.The port surgery went well - the anesthesiologist was great, we had a fun conversation. He didn't use twilight sleep because I'm allergic to morphine - instead he decided to just use iv sedation. I fell asleep and after an hour woke up still in the O.R. and felt fine - picking up a conversation where we left off.

My neck is still sore today though - not where the port incision is, but where the smaller incision is in my neck, just above the collarbone. Hurts like heck all the time, especially when I move my neck. I can feel the tube that runs over my collarbone too. I hope this gets better soon, I can't imagine living with this awful feeling for a year!

Thanks again for all the great advice - and Cindy - good luck with your port install - let us know when your surgery draws near.

CindyE

05-01-2008, 07:13 PM

Kathy,
So good to hear from you. I'm hoping and praying you feel much better soon after your port insertion. I'm meeting tomorrow with the Dr. so should know about about my port and my future treatment schedule. I've been praying for you and the others on this wonderful board. Please post back soon so I know how you are doing. Take care and rest my sister.

Love Cindy

Chelee

05-01-2008, 10:26 PM

Kathy, I'm sure your relieved to have that now behind you. Once the soreness settles down you will be so glad you got your port. When it was brought up to me I was so against it. But they wore me down and I am so glad they did. This way you don't have to be a pin cushion. :) This will make your chemo treatments & labs a breeze.

Mine was in my upper arm so I can't comment about on the pain around your collarbone. But I can tell you I had some minor pain/discomfort in my upper arm for about a week and then it was fine. :) So I am going to assume its pretty normal for yours to hurt a bit right now. I really believe it will settle down in no time. And of course always mention these things to your onc so they are aware. You will be so glad you got a port. I'm happy all went well for you.

Chelee

Gerri

05-02-2008, 07:06 PM

Kathy & Cindy,

A port is the way to go! I wish I had mine installed prior to my chemo starting. I waited until I had all four AC treatments before insisting on getting one - by then the veins were gone in that arm! I had it for my Taxol and year of Herceptin and it worked out great. Mine was also in my chest, but in an unusual (according to the nurses) place. The port was in my cleavage area and the end of the line was a few inches below my collarbone. There were no visible signs (other than the incison) of where my port was located.

Kathy, mine hurt too at the top of the line - it was worse than the lumpectomy. I was sore for a few days and then felt better. My actual port site was sensitive for a few weeks - I didn't know if it would ever feel better. It seemed like I was always bumping it. At first I used the numbing spray before having my port accessed but found that I always had a rash afterwards. I finally bit the bullet and went 'sprayless' and didn't feel much of a difference. It was a quick poke and then it was over - no big deal.

Best of luck to both of you as you start your treatment. Believe it or not it goes by quicker than you think.

Take care,

Jackie07

05-02-2008, 07:51 PM

Whenever I got my port "accessed", I would take a deep breath and hold it until the pin was 'in'. After a couple of times, it started to hurt pretty bad, and they gave me the sample cream to numb it beforehand. And I was like: "Why didn't I ask for it at the very beginning?"

swimangel72

05-03-2008, 01:12 PM

Hi Ladieeeeees,

So many of our names end in the long E sound - like my 22-yr-old daughter calls me "meeeeeeeeeeee", short for "mommy", this will be my new way of saying hello to all you dear ladies! (Not that YOU aren't included Bill - or anyone else who's name doesn't end in the E sound - you are all so dear to me!)

My neck pain is getting better today because I was able to take off the steri-strip. Also 600mg of Motrin helps too (at my doctor's advice). My chest area is all yellowish-black-n-blue, but I'm trying not to be a wimp. Isn't it amazing how doing boring laundry and housework can take your mind off these things? I still haven't returned to work because of the open abdominal incison - but that's healing up too, so I have so much to be thankful for. My mom will be coming tomorrow to visit me for about a week which will be wonderful. She's 84 years old today and getting more frail but has always been a wonderful source of strength to me.

Thank you all again for your support and prayers - I'm praying too that I'll find the direction God wants me to take in this BC journey - I'm stumbling along here and often find that words fail me which is really funny since I was always the "motor-mouth" in the family. Must be inherited - my mother kissed the Blarney Stone in her native Ireland many years ago!

sassy

05-03-2008, 06:21 PM

Katheeeeeee,

I've had my port for 3 years and actually forget it is there until I go in for bloodwork. My nurses tell me that mine is deeper than most, which sometimes poses a problem for them to access, but they just try a little harder. Never used the numbing cream--didn't feel like it was necessary, but good if you prefer it.

Another step behind you. Wishing you the best.

Sasseeeeeeee

swimangel72

05-05-2008, 05:23 PM

Thanks Sasseeeeeee! All the best to you too (your son looks like a rock star wearing your wig, lol!)

Bill

05-05-2008, 06:02 PM

Swimmeeee! I believe that God guides us all to our true purpose, if we seek that purpose, and are open to it. I posted "A Warrior's Prayer" back in late '07, and, in my own layman's, simple-minded opinion, that's all we need. Love and best wishes, Billeeeee

swimangel72

05-06-2008, 03:12 PM

Hi Billeeeeeee - I found your prayer and LOVE it, so forgive me - I feel compelled to copy and paste it here since it speaks so eloquently to what I'm feeling:

A Warrior's Prayer"
Father in Heaven
Spirit that moves in all things
Grant me the power and wisdom
to do what I must do
keep me strong
and guide me
to my true purpose.
Amen

Bill thanks for your guidance and wisdom. I also must say I keep hearing Psalm 23 run through my mind (perhaps because the Spring is sooo beautiful in my town, with "green pastures and quiet waters" and with God's help I do not fear ANY evil - even this BC beast.

Terri B

05-07-2008, 08:49 AM

Thanks for posting that prayer Swim, it hit the spot! I just posted it as a sticky note on my computer at work!

Thanks also to Bill for just knowing.

swimangel72

05-07-2008, 09:26 PM

Hi everyone - today I had my second infusion of Herceptin and Navelbine - it was the first time they used my port. The nurse told me to take a breath and exhale quickly and I didn't feel the prick too badly. Just like my first infusion, I came home, had a bit if diarrhea and needed a nap - otherwise all's well. My counts were OK - although the nurse said I should have a big steak dinner (I'm assuming that means I was a bit anemic?)

My biggest complaint is the ridiculous waiting time involved. Just like my first infusion two weeks ago, I arrived on time at 10am, only to have to sit in the waiting room 2 hours before they started my infusion! The infusion itself took about 2 and a half hours. My husband took off from work to drive me - we left the house at 9:30am and didn't get home until 3pm (we live 30 minutes away.) When I politely asked the nurse practitioner if this is what I should expect every time I come since I'm still new here and I'll be coming back for an entire year, she was actually SNIPPY with me (in a semi-joking way) saying if I didn't like it, I could find another oncologist's office! She said they are so busy because everyone LOVES them. http://community.breastcancer.org/javascripts/tiny_mce/plugins/emotions/images/smiley-surprised.gif I was really taken aback - and told her I was actually seriously thinking about going to a different oncologist who is closer to my house. Then she softened her approach (when she saw I was serious) and said if I was there at 8am next time I should be in and out much quicker. So I'm giving them one more chance, only because I really like my oncologist (the snippy nurse needs an attitude adjustment - like, maybe SHE should try sitting in a very crowded waiting room for 2 hours!) http://community.breastcancer.org/javascripts/tiny_mce/plugins/emotions/images/smiley-yell.gif

So that's my rant for today - sorry for being grouchy - if the waiting only impacted me, I wouldn't mind. I actually am reading a very interesting book ("China Road") - but I felt badly for my husband who waited for me - and I felt badly for ALL the very patient patients in that waiting room!

Terri B

05-08-2008, 07:44 AM

Oh, Swimmy... How frustrating for you.

I, for one, think the snippy nurse needs to be handed her walking papers!!! How DARE she!!

Makes me wonder what my Onc's office will be like. I will be starting Chemo in the next few weeks too. If someone treated me like that, having to go through chemo, I think I would RIGHTFULLY blow a gasket!!

Mary Jo

05-08-2008, 08:04 AM

Hi Kathy,

I remember while I was going through chemo and the waiting that was involved EVERYTIME. However, that being said................although, yes, I wished I could have gotten in and out of their.............there were always reasons for the waiting. Chemo infusions taking longer than planned, finding veins, adverse reactions, and a litany of other reasons why things take longer - doctors being behind - lab results not coming quick enough - etc. etc. etc. I remember one time looking around the waiting room and seeing some real sick people and saying to myself..........."Self, pray for these people around you and be thankful you are doing alright and able to sit out here and wait." It helped me patiently wait (well maybe on the outside anywayhttp://her2support.org/vbulletin/images/icons/icon7.gif ) and it gave me something constructive to do with my time. So I would pray and visit with others who were waiting. We would share with each other and become friends throughout all of our waiting.

Now, as far as the snippy nurse goes..................SHE would have gotten a piece of mind and there is absolutely NO excuse for that.

Hope that helps put it all into a little better perspective for you. Prayers for continued chemo/herceptin success.

Love & hugs,

Mary Jo

swimangel72

05-08-2008, 03:55 PM

Thank you Terri and Mary Jo - I did feel quite humbled in the company of so many sick people and did strike up a conversation with a few of them. It broke my heart to see so many different people there - one very elderly woman barely holding her head up in a wheel-chair then a very young, fit, pretty woman holding hands with a little 3year old boy - and I prayed for both of them! My own condition is nothing in comparison......and my own impatience is due mostly because I get nervous making my husband wait for me. I'm hoping by having my treatment at 8am next time it'll move along more quickly. I was even tempted to drive myself to treatments because immediately afterwards I felt fine.....but by the time we got home, I was a bit dizzy and tired, so I was happy I didn't drive. Today I'm still very tired with a headache - but a nice nap and some tylenol took care of it.

As for the snippy nurse - I realize you attract more flies with honey so I'm going to bring a box of Dunkin Munchkins with me next time and see if that doesn't help to sweeten her up a bit! (I heard from another nurse that the "snip" loves DD munchkins!) So thanks again ladies for all your kind thoughts and prayers - and mine are coming your way too!

Bill

05-08-2008, 05:24 PM

Hello, Ladies. I'm glad you liked the prayer. Swimmee, your post just reminded me of the thoughts I had when I first wrote it. Thanks for your kind words. And you too, Terry. Marejo basically said everything else I was going to say. "Self, ..." lol. I'm sorry about the snippetty nurse, she sounds unprofessional, but maybe she was just having a bad day. It sounds like you have a good idea about the DDM's! Nikki's nurses were all great, and we'd bring them little treats. Actually, I talked to a few last week, and told them I was going to stop by and bring them some "treats". They said bring fruit, and I said okay. I swung by the store and bought as many dark chocolate candy bars stuffed with almonds, blueberries, and cranberries as I could afford and then made a bee-line for the infusion room. I got there and hugs were all exchanged and then I handed the head nurse my bag, "oh, yeah, here's your fruit". The nurses all gathered around and looked in the bag and then looked at me like I was a bad boy or something, but then they all seemed really happy. Women. Go figure.

swimangel72

05-09-2008, 09:01 PM

Thank you Bill - wish I had some of that dark chocolate candy right now! As my 82-year-old diabetic grandmother used to say when she'd cut herself a slice of chocolate cake, "Life isn't worth living without a bit of sweet!"

swimangel72

05-26-2008, 06:17 PM

An update - my oncologist called me and was so encouraging to me on the phone, that I decided to drop my hard feelings. I didn't bring any treats to his office on my 3rd visit last week, but it wouldn't have mattered - I had a different nurse attend to me and she was lovely! Unfortunately, she said that my port incision got infected so she had to give me the infusion through my arm. The port incision never felt right to me - and the skin was turning red - so the oncologist put me on an antibiotic. The next day I saw my PS and he put me on a totally different, much stronger antibiotic.....and he still won't let me return to work. I was hoping to return to work tomorrow - but now I'm happy I can't because I've been soooo tired these past few days and my arms feel so heavy and useless - I can't call them muscle pains ......I never felt anything like this in my life. Must be a side effect - but what? Some kind of neuropathy? I could barely hold a dinner dish tonight for fear I'd drop it! If it doesn't get better soon, I'll be calling my oncologist......sigh.....some days I feel like I take 5 steps forward then 6 steps backwards.

Terri B

05-27-2008, 06:50 AM

Kathy, I'm following you and your progress and it seems you are having a bit of bad luck with infections! I hope and pray it gets better for you!

I got my port placed Friday, and so far, everything seems okay. The steri-strips are still in place. My surgeon said to shower normally, and the strips will pretty much fall off on their own.

I start chemo on the 2nd. I'm VERY nervous about it for the very reason you are suffering. The fatigue. I can't imagine not having motivation or energy to move. That scares me. But, i'm sure i'll find a way to deal with it.

Good luck to you. I'll be cheering for you! ;)

mts

05-27-2008, 07:33 AM

Glad you are doing well Swimeee-
I know the waitimg room scenario all too well. I can only say those that are not in our shoes really don't get it. Compassion is a very rare commodity. I did however buy a box of donuts at my second infusion and after that- I was always treated like an A lister.

maria

swimangel72

05-27-2008, 07:45 AM

Thanks Maria - I may still get that box of donuts! Or maybe a bag of breakfast muffins....mmmm.....corn muffins, my favorite!

And thanks Terri - I'll be sending you good vibes and prayers for your first chemo treatment......I bet you'll be fine, at least for the first few days. I've tried not to think about SEs too much because I wanted to remain upbeat and positive.....it seems much easier in the mornings for me. Perhaps I just did too much around the yard yesterday - my arms still feel a bit "weird" but I'm definitely not as tired.

I look in the mirror in the morning, getting less startled by my Frankenboob and tummy and think to myself - this is just the new "me" I just have to get used to how I look and feel........and as soon as I can, I need to get back on my Weight Watchers diet and back in the pool....I know I'll feel much better if I can drop a few pounds. Even if I don't feel better physically - psychologically seeing the weight come off will do WONDERS for my outlook.

Terri B

05-27-2008, 07:53 AM

You are preaching to the choir, Sister!!!

I'm so fat right now that when i run up and down the stairs, my fat gives me a round of applause!! (I know, i know don't quit your day job, right?) :D

Just all the stress of all this waiting caused me to eat like a hog. My stomach felt like my throat had be cut!

I can't wait to lose some of this lard. Maybe when i'm into a routine, and stuff feels a little more "normal" (hah).

CindyE

05-27-2008, 07:56 AM

Just wanted to check in Kathy and say that I have been praying for you. I hope the port gets better soon. I know the one in my arm is basically healed up but still feels sore to the touch. I think our bodies just need time to adapt to this foreign object and hopefully it will settle down soon. Also don't over do it. I know after my first chemo, I did too much and got really fatigued. Just rest and take it slow. Best wishes,

Cindy

Ruth

05-27-2008, 08:38 AM

Use the numbing cream (lidocaine - 4%) with a big glob of it. I asked my pharmacist for some or get a prescription for it. Cut a square piece of saran wrap (press n seal is best) over the cream at least 30 minutes before anticipated stick and then it should be numb. You'll feel the punch of the needle but no pain. If you don't wrap it completely with no air getting in- it won't sufficiently numb it.

It seemed that I had a longer wait time at the beginning of chemo treatments because they have alloted more time to you anyway. I would give your office another few visits before you bail on them...especially if you like your doctor. When I first started it was an all day affair but by the time it was only herceptin I was in and out usually under 2 hours. It is hard sometimes but the office staff has bad days too. A lot of the time they are over booked and that makes everyone unhappy...including the front liners. I came to know all of them so well. It was a blessing to have them as you go on this long journey of going to the office which seemed to be ALL THE TIME :-). As a hint - don't schedule on Mondays for treatment. They are ALWAYS the busiest. Wednesday is usually the best and you feel worse on Friday and can recover by Sunday.

Hugs ~ Ruth

Ruth

05-27-2008, 09:23 AM

I just wanted to add some more thoughts to this thread :-). Oncology nurses (well, all nurses) are true little angels. She could have been snippy because she knows how important each patient gets quality care, not being rushed, nor have to wait so long in waiting room! It is such a hard job for them as it is a hard job for us. From my humble experience I learned a great deal from them and it forever changed my view of their jobs. One of my nurses unofficially adopted me as her daughter and years later I still have another Mom. Does your office have a healing garden? Giving a flowering plant is such a nice gift or donation to a fund for uninsured patients in the nurses name. I bring this up since I really didn't have a nurse that wasn't on a diet!! They receive such great food gifts from patients (and yes, I brought them too!) but they also have food from the pharmacutical companies that supply their break rooms with catered lunches, cakes, cookies and dinners. I was AMAZED at how much they got. Two of my nurses refused to eat anything from the drug companies since they felt it was money spent on the wrong thing. They wanted more donations to the uninsured. But that is a whole other topic....

Bill....I don't think a dieting nurse would EVER be unhappy with chocolate...hee hee. I subtract chocolate from the list of treats! Another thing...my office had a refrigerator/freezer and you can ask if popsicles could be brought in for patients. Lots of people don't know how much a popsicle can help prevent mouth sores to suck on one during the adriamycin/cytoxin infusion. Nurses don't always tell them about it since they can't give them one if they don't have any.

I hope it all goes well for you ladies that are just starting on this journey. Please ask me anything that you think of to help you. I took all of my memories with me from that time, the good and the not so good but I hold them dear.

Hugs ~ Ruth

swimangel72

05-27-2008, 09:37 AM

Cindy I'm happy your arm-port is feeling better. I was thinking about you and wondering how it would feel to get the arm-port, but I was afraid since it's my only good arm. But at least you won't have a visible scar on your chest, right?

Thanks for the advice Ruth......I think the flowering plant gift idea to raise money for uninsured patients is fantastic! I'll ask about it at my next visit.....and I'll also try to be more understanding of the nurse's difficult job (usually I'm very empathetic - but this whole process has made me more of a grouch!) I'm so happy to have found this web site where I can vent!

Sheila

05-27-2008, 10:02 AM

Swimmee
I so understand the waiting game....and I have been doing it for 4 1/2 years...I live 75 miles away from the Hospital/Chemo Center, and with Chicago traffic, it is an all day affair. I sat in the waiting room last time, an elderly gentleman said to me..."I absolutely hate coming here every 2 weeks." I looked at him and told him I felt the same way, but it beats the alternative! We both laughed....as far as those cranky nurses go...I also had one nurse who was not overly friendly...borderline rude and sarcastic actually...then one day she overheard me talking about my 2 Labs, Sophie and Sadie....she was suddenly my best friend...couldn't do enough for me...the next time i came for treatment, she had purchased dog bones for my dogs..(she also has labs)....Lesson Learned: I tell everyone I see waiting for their chemo, to say that they have Labradors ...talk about them, heck get some fake pics or borrow some...she'll be so busy being nice, she won't have time to be rude!!!!

abitjaded

05-27-2008, 10:21 AM

Kathy and Terri,

I needed the freezing spray on my port. I'm a skinny bitch (can I use that word here?) and my port was huge, stuck out of my chest like a stack of quarters. It was sensitive for the first six months. Could not even sleep on my side (or the other side, what fun).

The nurses got really good at prepping the area, then spraying and a quick stick. Without the spray I would cry each time. Did not mean too, big tears of self pity would just start rolling. But after a while I got tough and didn't need the spray.

But I loved the port after months of two-three-four tries on the same hand and arm.

Love that Lidocaine idea.

Even those that diet, sneak. Food bribes always work. See's chocolates were immensly popular even though everyone wouldn't eat them. Ha!

Yuk, cannot imagine being in a waiting room for two hours if you feel lousy. Ask the nurses for a time frame when you get infusions. Depending on what they are shoving in it can go very fast or must be slow. They will know just how much time it takes. And as everyone learns, go for the first appointment in the morning. Ask for the slowest day of the week.

Carla

abitjaded

05-27-2008, 10:29 AM

The anticipation is the worst. Once the whole thing starts, you'll know what to deal with. And well, it isn't exactly routine, but tolerable and you'll have lots of company. Once I started chemo, the lonliness and fear got so much better, just because you see the same nurses and patients everytime, and you feel you have support and community. I felt no one was in charge until I met the chemo nurses.

Carla

Ruth

05-27-2008, 10:30 AM

Kathy,

Please don't apologize for being grouchy. We all have been affected by our nerves and still can be that way! I remember being very sensitive to my Dr's expressions. If he looked at the floor I'd read something into it, if he'd pause before he said anything, I'd read something into it. I was sometimes my own worst enemy because fear was ever constant those first two years. I'd try to sneak peaks in my file as he was writing to see if he wrote something that he didn't tell me. I'd thought I was finally over it until last time I went for my 6 month check-up. I guess I was way too nervous/upset that day and my blood pressure went WAY up. I have never had high blood pressure. He wasn't concerned, gave me a big hug and told me he thought it was white coat syndrome. He said I looked great and to see him in 6 months. What did I do? Go straight to CVS and take my blood pressure 15 times...LOL

swimangel72

06-06-2008, 05:44 AM

Thanks again for your support everyone. Wednesday I had my fourth infusion and they still couldn't use the port because it was still open, oozy and a bit red. So yesterday my PS looked it over and said it's not really infected but he would clean it up and put in a couple of stitches ("on the house" - he's so generous, fixing someone else's mistake.) After cleaning it, he held up a tweezer and showed me a thick curly brown thread and said, "THIS is why your port incision wouldn't heal! Something was left in there!" I was so grossed out - and feel so upset with the interventional radiologist who put it in! I'm not sure how to go about complaining about him - possibly I'll call my oncologist and ask him (he referred me to this radiologist). Anyway, I hope the incision will heal up quickly now so they can use the port for my next infusion in two weeks.

Terri B

06-06-2008, 06:53 AM

Dang, girl! I feel so bad for you!

They used my port for my first chemo on Monday. No spray, no lidocaine, just a poke! So much better than poking around for vein!! I was surprised at how easy it was!

I was reading back on this thread and you talked about your "frankenboob". I had to LOL on that one. I have two "franks" and the funny thing is, I'm getting them pumped up bigger and bigger every week! Under a shirt, it looks like i have some boobs, but take the shirt off, and EEEK! I still tell my 14 year to close her eyes because i don't want to give her nightmares! :))

Hang in there Kathy. I will be praying for you!

swimangel72

06-06-2008, 06:56 PM

Thanks Terri - and I like your new picture - the hat is cool - what team is it?

Terri B

06-10-2008, 08:59 AM

it's the NEW YAWK YANKEES!!!

**insert crowd cheering noises**

i got it from the MLB.com website on mothers day week. They had team gear with the pink ribbon on it and i HAD TO HAVE ONE!!

swimangel72

07-14-2008, 07:30 PM

Hi my friends - sorry I've been a bit absent. Two weeks ago I switched oncologists - I just couldn't deal any more with the long trip and the longer wait in the waiting room. On top of that, when I asked the "snippy nurse" if she had given me the Herceptin, she "jokingly" said, "What's the matter - you want more drugs?" To make matters worse - when I asked her if she would be sending my blood out to check my liver enzymes she said, "Noooooo, they only get checked every three months." I then explained to her about the problems with my enzymes in the hospital and how the doctor said they'd be checked every two weeks, but still she said, "Noooooo you don't need it." So I got home and called the oncologist and he said, "She's totally wrong - you definitely need to get them checked every two weeks. I'll write a note in your chart." Well that was the end of THAT! I felt extremely uncomfortable dealing with THEIR communication problem - so I switched to a very reputable oncologist only 2 miles down the road from my house. He agreed with my first onc's treatment plan - the nurse practitioner and infusion nurses are all LOVELY and I'm so much more relaxed! They seem to be extremely thorough - my blood counts will be checked even on my off weeks - and they gave me an EKG before my infusion. I felt in very competent hands!

So last Wednesday I went in to have my blood work done and the nurse practitioner noticed immediately that my port incision looked even redder than the prior week. It also had a small hole that was oozing yellow. So I called my PS and he put me back on Levaquin on Thursday - this morning I saw him and he said, "It's infected and you can't stay indefinitely on antibiotics, so unfortunately it has to come out." He said to be sure I get a surgeon to remove it and IF I ever have to get another port, to NOT use an interventional radiologist!

Fortunately, the nurse practitioner at my onc's office gave me the name of a surgeon they use all the time. He was able to see me this afternoon and said it definitely has to come out, the sooner the better, because an infection could travel to my heart. So I ended up in the ER and he was able to remove the port this evening about 6pm. I feel relieved it's finally GONE - but worried that the Navelbine will burn my veins! Wednesday will tell all.......the onc nurse sounded very confident about giving me the Navelbine in my veins (and I've had at least 5 infusions that way already) but still I'm worried because the last one really turned the vein in my hand from blue to bright red and it took two weeks to feel better.

Thanks for listening to me complain - and please say a prayer I'll get through the last few infusions of Navelbine without needing another port!

CindyE

07-14-2008, 07:41 PM

Kathy,
So very sorry to read that you had more problems with your port. It sounds like it definitely needed to come out. I'm hoping and praying that you will now be able to finally heal from all these infections and problems with the port. Don't you worry one moment about telling us all about this situation. You are not complaining in the least. You are only telling those of us here who love and care for your well being about the latest on port news. May God now heal you and grant you comfort for the remaining Navelbine that you need.

Mary Jo

07-14-2008, 07:55 PM

Hi Kathy,

I'm happy your port is gone. Infection isn't good so having it removed was best.

You'd be amazed at how those "chemo nurses" can access veins. I was a stubborn patient and was adamant that I did not want a port at all. My first onc. (who I only met with twice) didn't give me a choice. It was "port" whether you wanted one or not. The onc. I switched to was fine with me not wanting a port. She said that the chemo nurses were awesome in accessing veins and IF there was ever a problem and they felt they couldn't then I could get a port. Well, only being able to use my left arm, I did 4 dose dense A/C and 4 dose dense taxol AND 1 year of herceptin. The "pickings" were getting a bit slim near the end of the herceptin but rarely did I need more than 1 prick. Sometimes 2 and only once 3 but they always found a vein. So, I'm confident that you will be fine and a vein will be found each time.

Hang in there Kathy....you'll do fine.

Thanks for the update.

Mary Jo

swimangel72

07-15-2008, 04:29 PM

Thanks Cindy & MaryJo - I feel so relieved that the port is gone, and I'm hoping in a week's time it'll be totally healed so I can get back to swimming!

Bill

07-15-2008, 04:55 PM

Hi Kathy! I'm so sorry about all of the trouble you have been through with your lousy port. That makes everything so much worse, and having to deal with communication problems between your doctors and nurses on top of that. I'm so happy to hear that all of those problems are behind you. Good luck with your remaining treatments. RACE YOU TO THE POOL!!!!!

Terri B

07-16-2008, 12:35 PM

swimmie, are you almost done with your Chemo? Do you have to do a year of herceptin?

It's good to hear from you, I've been worried. You had to endure way to much incompetence at the hands of those nurses. How upsetting. I'm glad you are in a place you like now.

I hate that you have had so much trouble with your port. I don't know what i would do without mine.

Jackie07

07-16-2008, 01:21 PM

Swimangel,

Just wondered how the IV go without the port today.

swimangel72

07-16-2008, 02:16 PM

Thanks Bill ,Terri and Jackie - I really appreciate your kind words and for making me smile! I have to stay on Herceptin until April of '09, but I'll be done with the vein-burning Navelbine at the end of August.

My infusion today went very well without the port. The nurses all seem so calm and competent......they didn't infuse the Navelbine with the plunger, but hung up the bag on the IV pole and dripped it in slowly with saline. They also gave me an anti-nausea medication which surprised me, because in my old onc's office, they didn't give me anything. That may explain why after my infusions at my old onc's office, I'd rush home with diarrhea - now I feel fine, just a bit tired. I also saw my onc today and he said he'd do a Pet scan when I'm finished with the Navelbine but I shouldn't worry at all about the cyst on my liver - my enzymes are all normal. My red blood cell count was a bit low today, but nothing a big juicy red steak wouldn't help (yummmmmmmmm......Porterhouse is on sale today - time to fire up the grill!)

P.S. The other patients at my new onc's office are all so inspiring......across from me, an older man, very thin and bald with a wicked smile, twinkle in his eyes and an uplifting sense of humor; on my left an older nun in a white veil - she had swollen legs and a very kind face and smile - she spoke like the administrator of a nursing home; across from me on the other side, a young woman, with kids younger than mine, continuing our mutual exchange of stories of our pets eating junk off the floor and getting sick. Last week my daughter's cat ate half a Motrin tablet and had to spend a night in the animal hospital (costing me over $1,000 just to get him rehydrated and to be sure his kidney's were OK.) Last night, her dog ate a mushroom outside and she had to run to the vet......we were both laughing to hard, we felt like the nurses were about to caution us to keep it down (but they didn't - we did quiet down eventually when her meds started kicking in.)

I admire all these people so much - they are much sicker than I am and yet retain their love of life and laughter, God bless them all!

swimangel72

07-29-2008, 09:00 PM

Good news - I FINALLY got the OK from my PS to get back into the swimming pool at my health club. My incisions are all healed, including my port incision so today I put on my lap suit (it fit fine over the foob) and I completed 36 laps (1/2 mile). My right arm felt a bit tight but otherwise I felt great, if a bit breathless. I'm so excited to get back into shape........swimming just makes me feel alive and NORMAL! I've a long ways to go before I'll be able to complete 72 laps in 42 minutes (my old time) but today was a wonderful start!

Tomorrow I get my infusion in my left arm again, so I'm keeping my fingers crossed my arm doesn't hurt the entire week like last time. Also, I have to see the endocrinologist in the same office because my thryoid levels are low (which would explain my tiredness, lack of energy, and inability to lose weight.) I'm not sure if it's safe to take thyroid hormones because I read it can cause an increase risk for breast cancer, but I'll see what the endocrinologist says.......if he says it's OK, then I'll go for it because I really want to get my old energy back. So my dear friends - the light at the end of my tunnel is appearing a BIT brighter these days!