#chemo port

[farrenheit365]

It's that little souvenir of a terrible year

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[risenwraith]

# number uncertain

I have a red sore spot right on the fold of my armpit with the remaining tit. I assumed it was a mosquito bite - I am a tasty foreign snack for them after all. But it is still there and has not behaved like a bite for two weeks. So now I’m a touch worried. And I don’t have insurance so can’t even ask anyone also my port may or may not kill me whenever cos it hasn’t been cleaned. Cos no insurance . Please please please can this not happen allllll bloody over again? Please? FUCK

[risenwraith]

#212 Don't traumatize the medical staff.

Had a checkup with Dr Craig last week. He was very pleased with my labs and general state of being. He said it was so much nicer to be on this side treatment. I agreed. He said that it still must keep me up at nights...

I wanted to tell him that there was no treatment for being utterly alone, or extreme poverty or early onset Alzheimer's, or the misery that comes from creating things people will never see or care about... which are the things I rationally worry about. Cancer doesn't even make the top three.

I said, "Er, no? Oh, shit - I probably should worry about it, I guess?"

And he said, "No! No, you don't have to! We'd rather you didn't!"

I asked if my port could be taken out. I very definitely didn't mention it ought to be taken out because when I hate myself I think a lot about the fact I still have medical numbing cream and could just ram a scalpel blade straight into the silly little bubble under my skin and not even feel it until the pressure changed and my vein spat out pints of red.

This is something I don't tell Dr Craig or the nice receptionist who likes my hair or the nurses or anyone really. I think they'd take a very dim view; especially since they collectively worked for a year to make me not dead.

(Despite the 'Danger: Severe Depression!!' writ large all over my medical notes, having cancer and losing a tit didn't depress me. However, when someone I care for tells me I am a useless, terrible, horrible piece of trash, and they can't think why they ever liked me... That does make me think lovingly of passing out from blood loss.)

All of this being the case, definitely need the port removed. See? I am very sensible with my idiot brain issues, thank you.

[risenwraith]

#173 Ports again...

The port has to be 'flushed' at least once every three months to make sure nothing clots and gives me an aneurism. This is fine when turning up for chemo or tests once a month, but more annoying when I have to make appointments just to be stabbed with saline and blood-thinner. I asked if there was a schedule for the port to be removed and was told 'No, it's up to you - many patients just keep them in!'

I privately thought that those patients must be in and out of hospital a lot more than I plan to be, or that they're of an age where a check-up every couple of months is just part of their routine.

I found it very funny when I went to the hospital in Kona and both the doctor and the radiologists were kinda confused as to why I still had the port in and asked if I was going to receive further chemo treatment.

I need to find out whether my insurance considers port removal to be elective surgery or not, and then for preference I would like the medical Harkonnen-style widget out of my chest. It's done a great job, but I occasionally want to carve or claw it out of my veins which isn't great for someone with a personal history of self-stabbing. *sigh*

[risenwraith]

#41 The port, the port… the port is a thing. 

If you require chemo, they like to install a port.

It’s a smooth large lump by your collarbone. It’s quite neat, all things considered. But it is a lump where there wasn’t one before and that is… fucking disconcerting frankly.

It is a brilliant thing - don’t get me wrong - it will make chemo easier to deal with and that is truly wonderful.

But… it’s also a huge lump under my skin with tiny tubes stitched into the main bits of my circulatory system. And that’s… a creepy thing to come to terms with.

(Or I suppose you might be one of those cyberpunk nuts who really likes the idea of implanted tech and extreme piercings – in which case you’ll be very proud and smug.)

[herstoryherlegacy]

Chemo Day Won (1)

I woke up at 7am, brushed my teeth, and at 7:15am applied a liberal amount of topical lidocaine to my port site and covered it with a large bandage. This is key for infusion days. I put on some comfy clothes, gathered our whole cold capping kit, heated blanket, and cold mittens and booties. We were on the road by 7:50am.

I didn’t feel nervous as we arrived, or at least I didn’t think so. I went back to get weighed, then we went back to the private room. Private rooms are offered to those cold capping because we carry significantly more equipment. I laid in the bed propped up, we met with the nurse attending to me, and then I got a visit by my two nurses from the cancer center with a welcome bag and warm wishes. We got a tour of the infusion center, got shown patient bathrooms and guest bathrooms, and lastly the snack station 😍. We went back to the room and prepared to insert the IV into my port.

I was nervous for that! My blood pressure reading was a bit on the higher side, so yes I may have been nervous. Rightfully so. The nurse administered my pre meds which included a steroid, high dose Benadryl, and Pepcid I think. That Benny kicked in quick!!! And I don’t like it. I was sluggish, I couldn’t look at my phone, I just wanted to close my eyes. But we had to start capping 30 minutes before the chemo and it was time. God bless my husband for being committed to helping me do this. It’s a process and it had kind of a rough go the first time. I think there was too much opening of the cooler, because we threw in the freezer packs for the hands and feet. The Benadryl eventually wore off and I felt normal’ish again. Then nurse came in a few times to switch our the immuno therapy bag, and then the two different chemo bags. The entire process took about 3 hours, I was there a total of 4, and the last half hour was spent making sure I didn’t have a reaction to anything. Once we were good to go we packed up and left as soon as possible because I needed to keep capping at home.

This is me in full cap gear, I had to continue with the cold caps which are -30 degrees, and I wear them for 20 minutes before switching to a new cap. And yes those are baby socks protecting my ears and chin. The caps were not at all bad. Yeah it’s cold and my scalp went numb, but it wasn’t bad at all. I hope I’m doing it correctly because it’s suppose to be rather uncomfortable but I think I don’t feel it as bad because my hair is thick. The day carried on just like normal after my 7 hour day of cold capping completed at 5pm. It felt so good to take it off, the straps have to be super tight and under my chin is sooo sore. I was expecting to feel worse, but aside from my elevated blood sugar I felt fine. That damn steroid..my blood sugars were elevated to 200-250 for about 10 hours. This was somewhat expected as the same thing happened when I was given a steroid in the ER recently, but next week I may know better on how to combat this. My sugar didn’t come down until about 9:30pm. I was already asleep by that time and suffered a low blood sugar of 44 about 3am. Nothing a banana couldn’t fix. But I need to be careful about timing my insulin because if I feel any worse (nauseated or what not) I may not be able to eat. And that concluded my day. It felt like a win, but I know the more I get chemo the worse I may feel, but here’s to hoping I’m part of those few who feel pretty good most of the time. Thank you Jesus for a good day!

[herstoryherlegacy]

It’s Port Day

I’m currently waiting to get some anxiety meds and go to the procedure room. I’m feeling relatively calm, but I won’t deny any drugs to help me. I’m forcing myself to be okay. As it so happens, my brothers best friend may be the one doing my procedure today. Which makes me feel more at peace. Almost like my brother himself is with me. I almost freaked out when the doctor showed me what the port looks like and how it flows over or under my collar bone and into my main artery that leads to my heart. But I trust that they do this every day and will be successful in completing this. I’ll say prayers while I’m in the room if I don’t fall asleep, I wish I could listen to my Gilmore Girls.

My sweet dad is waiting or..napping in the waiting room. Although age can sometimes get the best of him (he’s like..in his 80’s but definitely has the health of someone in their 60’s) he is one of the most reliable people in my life. He also has a cool as a cucumber temperament in literally all high stress situations like when I received my pathology report at my surgeons office, but that’s for another post. But that’s why I chose to have him here with me because if I panic, he will help to ease that by being so damn calm and making the most random conversation. Anywho..I was waiting in a room with 2 other patients receiving various treatments, both men in their late late stages of life. I was the youngest in the room. It didn’t do any good to my nerves knowing I was with people who were coming out of procedures which may or may not be more serious than mine. The vibe just felt scary. However the nursing staff were kind, warm, and knowledgeable explaining to me each medication and answering any questions I had. I met with the doctor who showed me exactly what the port looked like and how far it would be inserted into my body. I can’t deny I panicked and told him “don’t show me! No no show me” it was then I was given the Valium 😂 along with an antibiotic. Word of warning if you’ve never had it, it burns all the way up your arm to your shoulder like fire 🔥 but only for a few moments. It kicks in immediately 👌🏻 and I was feeling fiiiiiiiine. They wheeled me off into the room where I shimmy’d myself onto the table. First was an x-ray to check my chest. Such a neat picture. Then they prepped the area with alcohol, threw this drape over my whole upper body and face 😂 which I didn’t mind because I do not want to see what’s going on. Juan did end up inserting my port which was relieving. To my surprise, they asked me what kind of music I wanted to listen to! In my sedated state (second dose of Valium 🤤) I decided to request circa survive. Always a solid choice. Luckily the rotation played some of my favorites and also threw in some curveballs like the Mars Volta (score!) so that really helped to calm me. As the procedure started I needed to be numbed, so I had gosh maybe 6-7 shots along my upper chest and some around my collar bone I believe. Yes it stung, but it was tolerable. I don’t feel him making the incision at all, I couldn’t tell what was happening, but I did feel when he was inserting the tubing which felt close to my lower neck and chest area. That was pressure for sure, but again, nothing awful. That tubing I believe was removed and replaced with the one that would stay inside. After about 20-25 minutes we were done. Immediately I felt sore. I needed to shimmy myself back onto the gurney 🥴 that was hard because various movements required me to tense my neck or use my neck when I moved which is when I felt the soreness. But it wasn’t bad. I got wheeled back to another waiting room. The nurse helped me dress (bless her) and I got wheeled to the front doors and went on my way.

Here’s Juan! And my x-ray after 😊 I’m home now resting. There’s a tightness in my chest. It was a little bit of a struggle to eat. Opening my mouth too wide also hurts the neck. No showers for a couple days. I need to let it heal about 2-4 weeks (baby’ing this for 4 weeks is ideal). So overall, the experience wasn’t as bad as I was thinking. Mind over matter. Apart of the emotional rollercoaster I was very anti port. I didn’t understand why I needed it if I had amazing veins, however, in the long run since the chemo I’m doing is stupid toxic, it will eventually ruin those beautiful veins forever. This is better protection.

Eventually these scars will heal and I will be all gravy. Until then, it’s kind of painful, laughing hurts, and I should probably turn off the New Girl cause it’s way too funny. Happy with today 😊 goodnight!

[candy--heart]

In February, I had surgery to implant a chemo port into my right shoulder/chest area. It has hurt from the beginning but only in my right ear. Last week it started hurting up my shoulder and down my chest. Yesterday morning, early, those pains turned into what felt like electric shocks whenever I reached for anything with my right (and dominant) hand.

On Wednesday, the Cancer Care Center sent me to get a doppler scan and they found no blood clots, so they scheduled me to come in even earlier than I would for chemo on Thursday (yesterday) morning for x-rays. What was found is that the catheter of the port HAS moved slightly. It isn't enough to make the port not work as a port, but it is enough that I will be in pain for the entire length of time I have it. At the point I got the news, I was due to have the port for two years.

The nurse practitioner who gave me the news did so in an extremely empathetic way, as though she was really devastated to have to give it. This was especially true after she asked if I'd tried Tylenol or Advil for the pain and I confirmed I had and that neither had helped. Then she asked if my boyfriend would give me neck massages and I told her he already was. She just grabbed my hand and told me she'd send many prayers up to heaven for me. I was weirded out by this and then remembered I was in a Catholic hospital.

She told me that it's more common that ports move in people with breasts as gravity pulling them in various directions as we change positions can affect the ports. I never wear a bra, so I figured that gravitational moving is probably worse on me.

After this, I went back to Cancer Care and had my exam and chemo. During the exam, I told my doctor what the nurse practitioner had said about the port and he said, "Under these circumstances, then, we will look to remove your port after treatment. We won't wait the extra years. Of course we will do imaging and blood tests first. Then we'll likely remove it because, at that point, you will start a chemo pill."

So this pain is mine for as long as I have the port. They can't fix it if pain meds aren't working except to remove it and give me surgery, again, to put one on my left side. That's already a more complicated procedule and my breasts will still move. So I said no to that and told them I'd take the pain. Then, today, very early, I had to break my May Day principles and order from Amazon. I needed a decently secure sports bra--something that would keep me from moving so much but had straps that move easily enough for when I have chemo.

All in all, it's been a couple of shitty news days.