Getting my port today

[Terri B]

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]

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]

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]

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]

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]

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]

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]

Swimangel,

Just wondered how the IV go without the port today.

[swimangel72]

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]

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!

[CindyE]

So good to hear from you and that you are swimming again! I'll be praying for you to be back to your normal self soon. Take care and God bless.

[BonnieR]

Kathy, that is great to hear! I am supposed to swim more to keep lymphedema at bay. And you have offered inspiration. Although I can barely keep afloat! Still, there is hope. What was that movie title, "Hope Floats"?
Anyway, thanks for the update.

[Believe51]

Thanks for the wonderful updates, I have been following this post since the beginning. Wanted to know how you are getting on right now?? Sending you love and a cyberhug>>Believe51