Third Time's a Charm... I hope.

I ended going to hospital on Thursday for a dye test on my port. Yep, it was screwed up royally. The catheter was too short and it had shifted and pulled and twisted itself inside of me. I peeked and saw the line in my neck when they did the xray. What a nightmare. So while they had me there, prepped, they went ahead and cut me open for another surgery. They completely removed the old (ha! three weeks old!) port and placed another one, along with the correct amount of catheter (I hope.) This one is a different model and size "better suited for the pocketed area" and the doctor said he "uses a different, better technique to insert it which should fare better." Now, why didn't the first doctor do that? (I can but won't insert a lot of swear words here!) I can tell already that the neck area is better. Of course I'll have a big knobby scar but at least it doesn't hurt anymore. This time the doctor made a new incision lower down, closer to my collarbone. And of course cut through the old incision a third time to remove/replace the port. 

I was awake again (conscious twilight) during the whole procedure and it hurt like hell.  I NEVER ever want to do that again. As a matter of fact, I don't want to see a hospital again. I was in SO much pain that night I didn't sleep more than an hour in the early morning. I gasped and moaned all night, every time I tried to move. Some of you know that I have a very high pain tolerance so this was scary for me. Two Tylenol3's didn't touch it a bit. The nurses the next day said it looked fine, no infections or abnormal swelling. They suggested taking Tylenol around the clock to keep a steady stream in the blood. Unfortunately, when the nurse peeled that clear plastic post surgical tape off (the one for extra sensitive skin) my skin was red and raw underneath again. My body is trying to tell me something too. It's sick of this abuse.

I feel much better today though. I slept really late, lazed around the morning and actually got to the grocery store in the afternoon. (ok, and the fabric store... but that's another story.) The area is still a bit swollen, hurts to put pressure on it (duh) but no more sharp stabbing take your breath away pain. I really really hope that this is it. Chemo was hard enough on Tuesday without having to go through the ordeal of surgery and so many painkillers. My poor liver and kidneys. I'm trying to drink a lot but having a hard time because of the hiccups from hell and subsequent acid reflux. 

Thank goodness for Posicles and Luigi's Italian Ice :-)

Sucking Sour Lemons

Today was a sour lemon sucking day. I had my Strong Chemo Date (TCH) with the lovely aqua chair. I got there at 9:30, checked in by 10:00 and for the next 4 hours two different nurses tried to get my port to work. It wouldn't cooperate. They used about 12 syringes of saline, and a few of heparin, to flush it out, but it would NOT give a blood return. Under no circumstances. I laid flat back in the chair, I stood straight up, with my arms straight out, with my arms in super-cleavage making position, bent over at the waste-shoulder hunched-deep breath, neck this way, neck that way, one foot in one foot out do the hokey pokey turn all about... nothing worked. Once the nurse got a small blood return, very spotty and weak but just enough to flush the saline out, and then nothing for the blood tests they had to run. The last resort was putting a chemical in the catheter that would dissolve any junk that might be in there. They affectionately call it "chemo draino." Conclusion: My port does not work. 

Remember my port? I was supposed to have it placed on a Friday? The doctor doing the surgery (in an operating room under anesthesia) couldn't find my subclavical vein and punctured an artery instead. Instead of risking puncturing a lung she just closed me up and gave up. Then 2 days later the next Monday I had to go to Interventional Radiology and have them do it under fluoroscope guidance. I was awake and aware during that whole surgery and probably heard things I shouldn't have. I didn't have a good feeling when it was done. Just a gut feeling. 

The port site is finally healed. The whole area is numb so I barely feel the needle punctures. The scar is healed. The neck site is really ugly. I can see the catheter sticking out when I turn my neck and there's a visible bump where the catheter turns into my vein. You can even see it on the pictures I posted. I still occasionally wake up with a cramping like pain at the neck site but for the most part my head/neck aches have subsided enough to tolerate without drugs.

Now what happens? I will have to go back to the hospital sometime this week and have a dye test run to see where the problem is. If the catheter is kinked or too short and running into the wall of the vein instead of bending. (My guess is the latter, based on what I "heard" in the OR) How do they fix it? My guess is to go back in and straighten it, or take the catheter out and run a longer one. Another surgery? More scars, more tape, more blisters, more pain, and a helluva lot more money to pay. 

I'm feeling a bit down tonight. I'm super tired. A bit depressed. But I guess I just gotta do what I gotta do. I have to have port access, it's been strongly advised by every nurse I talked to and every doctor I talked to. I have lousy vein access and they can only use one arm. I have approximately 16 more weekly infusions and 13 every three weeks afterwards to still complete over the course of a year.

I'm starting to hate lemons. I'm going to bed.

Puttin' on the ass kickin' boots

On Friday, after the failed port placement, my doctor made an appointment for me on Monday to have Interventional Radiology put in the port with fancy x-ray equipment. At 1:00 Monday. Ya hear me? They made an appointment for me at 1:00 MONDAY. At 12:15 on Monday the IR department called and said that the Medical Oncologist still wants the port put in and she wanted to schedule it. HUH? My sister, who was sitting across from me, gave the phone the stinky eye and her fighting feathers got ruffled. Which gave me the little push I needed. I told the poor girl on the phone that I already had an appointment for the port placement. She said I wasn't in the system for today. I said "On Friday the appointment was made. I am going to be there at 1:00. The port WILL be placed today." Silence. Put on hold. She came back and said they would find the paperwork (that wasn't filed apparently) and that they will "squeeze" me in and I should still come in at 1:00. Bet your sweet ass I will.


I was there at 1:00 and they got me in right away. They saw I wasn't pleased I guess. It felt good to stand up for my rights as a patient. At about 2:15 all the IV's and electrodes and monitoring stuff was ready, paperwork was finished, bladder was emptied and I was off to the procedure room. I emphasized the fact that although I weigh XX pounds I don't tolerate drugs well and "Less is More". Well the nurse did a great job. I was conscious and alert throughout the whole procedure. Which may or may not be a good thing. I never had that "drugged out" feeling afterward, I talked to my husband about 10 minutes after arriving back in recovery. But on the other hand I heard EVERYTHING the doctors were saying. And the tunneling through the skin reminded me of those pictures you see of doctors doing liposuctions. Jam that tube through the skin to break the connective fibers. Ick. 


My neck hurts. The incision area is still fairly numb, but my neck muscles hurt from having my neck facing the side the entire time, and not being able to turn my neck now because this tape is so darn tight. And they said I can't shower for about 5 days? HUH? I had no showering restrictions after Friday's mishap! Gah. Here's a picture of afterwards: 

The top incision is really close to my trachea, which feels pretty bruised from the doctor pushing on it to move the catheter further down. I didn't know the jugular vein was so close to the front of the neck. Yes, they had to go up through the skin to the jugular vein, then thread it down to the sub clavicle vein and down towards the heart. Apparently I have naughty veins. And a blue neck and chin. 


Tomorrow is the big day. (First Chemo session) I just want it over with. My most excellent sister is going to drive me and stay with me the entire time. Hopefully we can get a few laughs throughout the day, like we did today. Laughter IS the best medicine.