PICC line pic

Here's what the PICC line looks like, for anyone interested...



The two things sticking up are taped to my arm, just so they don't get caught on things. Otherwise, they'd just be flopping around, asking to get caught on something...

All the tape is actually one big piece, with a sticky window. The whole thing is stuck to my arm.

The big white piece, closer to the "rabbit ears," is kind of a connector between the two ears and the single tube. The little white circle (harder to see in this pic) is over where the thing actually goes into my arm. The little blue tube goes from where you can see it, up my arm (inside) into my neck, I believe. They took an xray of my juggular after it was done to make sure it was in the right place, so I assume it's ending up in my neck.

The nice this about this, besides the obvious no-needles benefit (blood can come out and chemo can go in), is that the chemo doesn't burn (which it often does to some extent), since it's not actually touching those veins. Rock on! That also means I'm less likely to have issues with vein burn-out as a long-term side effect. (It's not really called vein burn-out, but that's the best I can do without looking it up.)

So I'll have it for two weeks. They will, as far as I know, take it out immediately following my next chemo appointment.

I did not meet my goal :(

It was not a happy day at the doctor's office today.

First nurse, who was called in to get me last time (she had the successful third stick) started. She tried twice and induced a really serious amount of pain.

She got another nurse who tried once and said she didn't want to try again.

She got another nurse who said she "can get anyone." I am her nemesis. She tried twice, to no avail, then recommended Ativan, an anti-anxiety pill. So they got a script for it, TJ went and got it, I took one. I think the nurse tried again too soon after me taking it (12 minutes), so it didn't do much, and she missed.

They called to have a PICC line put in right away, so I went for that.

The PICC nurse had been one of the ones to try back in May to get in an IV, and she remembered me and my veins. In any case, she was fabulous. The procedure was pain-free. Even injecting the anasthetic didn't hurt, and that usually burns like mad.

I went back to the infusion room and got my chemo, ending only an hour after the office was supposed to close. (Thank you to whichever doctor stuck around 'til I was done!!) So I was there from 10:30 'til 6. Long day, fraught with much pain and anxiety. :(

The PICC line will stay in until my next treatment. After that treatment, they'll take it out. It's a different kind than the last one I had. If I need a scan, I'll need a separate IV, because this won't accept those kinds of injections, don't know why. But I don't think there will be any scans, so I don't think it matters.

The results from the ultrasound yesterday came back negative - there's no perceptible clot. But I'm still swollen, so I think there is still something in there. In any case, I'm still on the bloodthinners, to help prevent a clot from this new PICC line, so they'll continue to help the other arm as well.

Two more weeks, no more needles :) At some point, I'll take a picture of the PICC line so you can see what it looks like.

today's small goal

I have my chemo appointment in about 45 minutes. This is today's goal: I will not cry when they try to put in the IV.

This is what usually happens: they try once and it doesn't work. I'm OK. They try again and it hurts like a bitch. I'm OK. They go to get someone else to try (I think they have a two-stick maximum per nurse per patient per day). While they're going to get someone else, I cry.

I don't cry because it hurts (it does hurt, but really, not that badly, and not for very long), but more the psychological "here we go again with the needles." Or something like that. I'm not sure if that makes any sense.

Then the second nurse comes over and tells me that when I'm upset, the veins constrict which makes it harder ... which I certainly know by now. I could probably not cry by that point, but I'm not convinced that looking calm will do anything to the veins. I think I need to actually be calm.

In any case, they always get it on three. When I went for my PET scan, it took three tries. I cried after two.

The crying is embarrassing, frankly, and it sure would be swell to stop.

That's the goal for today.

ding, dong, the cancer's dead!

YAYE!!

The doctor gave me more detail about what the CT/PET scans showed last week.

The mass has been reduced, now measuring 2.6 by 6.3 by 8.6 cm. I didn't learn until today that I had had a whole lot of cancer. I'm glad I didn't know (though I'm generally not a fan of being in the dark) — I think it would have been harder to be unabashedly optimistic. Also, the fluid around the lungs is gone (duh — I can breathe now), and the fluid around the heart is almost gone.

He would like me to have two more chemo treatments. One will be tomorrow and the other is scheduled for August 9. I will need to meet with a radiologist at some point and learn about that end of the treatment, etc. And then I'm done and cancer-free and on my way! :)

(For anyone keeping track of the schedule, chemo should have been today. However, when I went for my weekly blood draw yesterday, they couldn't get any out of me. No blood test = no chemo. I went back today, after chugging water yesterday, and it flowed freely. Chugging water again today, since I'm going to need an IV tomorrow...)

In the meantime, I have an ultrasound this afternoon to check in on the dumb blood clot. I am also greatly looking forward to that little bitch being out of there so I can eat spinach and exercise.

No more cancer :) No more cancer :) No more cancer :)

I was going to say something else, but it has left my brain. I'll come back later and add it if I ever remember what it was ...

good news :)

(This is entirely a copy/paste from the email update.)

I had my PET scan on Thursday (thought I was having a CT scan, but I was wrong). They're similar and use what appears to be the same kind of machine that makes me glad I'm not claustrophobic. Anyway, aside from the three attempts to get in an IV, it was an easy procedure.

I called the doctor's office on Friday morning, just before we left for San Diego, and asked them to call my cell phone whenever they had the results, if they were able to disclose them over the phone. No phone call Friday, so I assumed I'd just find out on Thursday.

Well, on the way home today, there was a phone call!! The nurse said that they received the results and Dr. Oncology reviewed them and the mass is significantly reduced and is responding well, and that there is (still) no concern in any other area. This is the first scan that was whole-body (the last one was whole torso).

I will get more details from the doc on Thursday (like: how much reduced? how many more treatments?)

I was disappointed to learn that it was still there at all, but I really can't complain. I was a bit nervous that it wasn't doing anything (slight nervous, didn't surface too often), since I am, for the most part, feeling pretty well. Which brings me to ...

The paperwork to excuse me from work was handed in last week. It feels weird not to be going back to work, especially since I feel pretty good most of the time. I'm sure one day with kids all day would kick me really hard onto my butt. Medically, they don't want me to get sick (in an elementary school? never!), because I can't take regular meds with the chemo. Infection = hospital stay. I love teaching and love the kids, but not enough to risk going back to the friggin' hospital.

That's my story. I'll let y'all know on Thursday what I learn at my appointment.

more on hair

So many hair experiences in the last week...

The first one I posted about already: getting a compliment on my hair as it is.


On Monday, when I went for my neulasta shot (the happy shot that keeps my white blood cell count high), I was waiting at the desk for the nurse to come back with an answer to a question, and another woman walked over, also waiting for the nurse to return. Her hair was short and kind of thin, but it was long enough to be combed. I remembered how thrilled I had been to get a compliment, so I thought about what to say.

"I love the color of your hair." It was a fabulous shade straddling blond, brunette, and red.

"Really?"

We got into a conversation about her hair and her hair journey. It is in the process of growing back in a different color than it was, and she's recently decided that it's long enough to go without a wig. It started growing back even though she's still undergoing chemo. We ended up talking for 5 or more minutes, as I had another question for the nurse that sent her looking for an answer (yes, I'm one of those...) It was a really nice chat which did eventually deviate from hair, but never from cancer-related things. She gave me a hug and offered me prayers before she left. It is an interesting comraderie.


Last night, TJ and I were out to dinner. Some 13-ish-year-old boys, who were just getting ready to leave a table just in my line of vision, were pointing and laughing. I stared them down at the table and they stopped. I followed them with my eyes until they had left the restaurant and were out of sight. I'm used to people looking at me, or taking double-takes, but sheesh, people, no need to stare, and certainly no need to point and laugh. Stupid kids? Yes. Hurt feelings? No. Just irritated.

I told TJ today that I am now prepared to have a mohawk or purple hair or anything crazy, as I'm getting used to people staring anyway...


But ... my hair is growing. The sides lay flat against my head. The top is uneven. In between the long hairs on my legs there are new stubbles. I would have thought this was much weirder, but the conversation with the woman on Monday normalized it a bit.

One of the women in the group of waiting-room-complimenters said that her hair had not all fallen out, and when it grew back in, it was exactly the same as when it fell out. I wonder if mine will do the same. I wonder what it'll do at all. I don't care too much, though I am hoping to some degree that it's at least as thick as it was before.

how much do I suck?

So when I was in the hospital and my poor lungs were being crushed by fluid, I had a little breathing do-jiggy that I was supposed to use 10 times an hour (in any number of sets and reps I wanted). I put it in my mouth, took a deep breath, and measured where the little arrow went up to. I call it my suck-meter: an objective measure of how much I really suck.

In any case, I couldn't do it much a while ago. I brought it home and used it a lot when I first got here, monitoring progress. Then I had some pains in my side and couldn't take a deep breath. Then I tried it again the other day, and I came close to maxing it out. I think the lungs are clear :) Which, ironically, means I really suck.

:)

chemo #4 and TMI

OK, first chemo #4, then some chatter about girly things going on. I'll warn you before I get to that part, so if you don't want to read it, you don't have to. I'll leave it as the last thing.

Yesterday's blood draw was pretty easy, which I am attributing to being super-hydrated. Today's IV was another 3-stick deal. The first one got the vein but leaked from the vein (no good). The second one looked good and they started the anti-nausea drug through it, and it started to leak (internally). Thank goodness it wasn't the chemo!!!!!!!!! The third one was good to go.

I was in the waiting room and was complimented on my hair!!! It's very thin, but a little group of people who had been talking to each other when I sat down said that when I walked in, they noticed that I wear it well. The one lady was talking about her wig (it was a good one!). Fun people.

I saw my doc again :) As usual, I had many questions, including some I have asked other people in the past. Some of his answers were different.

I am allowed to exercise as long as it is not vigorous. I clarified, and I can use free weights, do push-ups, sit-ups, that kind of thing. Yaye!!! I will need to obtain some small equipment for home. I have lost a lot of tone, so I'm hoping that these light exercises will bring that back. (I feel so squishy!!) I can work on the muscle and endurance again later.

I can go back east for the wedding. I will buy trip insurance with the plane tickets, just in case (think positive but be real), but that was good news.

Even with the happy new shot, I should take neutropenic precautions (mask if I go out, no fresh produce, etc.) until I have the results of my weekly blood test. This is not what the other doctor said, but it makes a lot of sense to me, which is why I asked again. When I go on Wednesday next week for blood tests, I will go early in the morning and ask if there's any way to get the results the same day so that my Wednesday evening is free. We'll see...

The blood thinners are finally regulated. Just need to stay consistent. For anyone to whom the number is meaningful, it was 2.4 today. All other numbers were in the normal range except white cells, which were high.

In general, it seems that the side effects are getting a tad worse, but they're more concentrated and I'm bouncing back from them faster. I am changing my diet around a bit this weekend to see if that helps at all. But the doctor asked me a string of "have you had any [fill in the potential side effect]" questions today, and the answer was no to all of them except vomiting (just that once). He said that I'm handling the chemo really well :) I guess this isn't necessarily normal, but hey, I'll take it! I'll attribute it to being in good shape ahead of time and having a good attitude (which is helped by the support system -- thanks!!)

He said he'd order new pictures to be taken in the next two weeks, so soon-ish, I'll have more news as far as that is concerned. The tumor is gone; the picture just needs to show it.


And now, for some girly things that have been going on. Stop reading this post now if you don't want to hear about it.

During the fertile part of the cycle, there is longish, sticky discharge. It helps the sperm. Anyway, that all started coming about the time it was supposed to ... and hasn't stopped. I asked if it was a problem and the doc said no, as long as it's clear, so I won't worry about it. Other than it maybe being a problem, it doesn't bother me.

I was told that periods would stop. So since my last period ended on the day I started chemo, I expected that to be the last of it until all this nonsense is done with. Happy side effect :) Imagine my surprise when Aunt Flo came to visit last week! Not as bad as a normal period, but still several days. The funky thing was ... the evening before it started, it tinted the discharge to a brownish color, which flipped me out, since I didn't know what was to come and those two things don't norally come at the same time. But it all turned out well in the end and if it happens again, I'll know what it is.

Finally ... I have the floppiest boobs ever. I can fold them in half so the nipple doesn't even show. They were much larger when I was heavy. They lost weight but didn't lose skin, so they're really just kind of empty balloons hangin' there. Well, in the last 3-5 days, they've filled in quite a bit and don't fold over any more (still floppy). I asked the doc about it today and he said it's the medication.


So ladies, if you'd like to lose weight, stop your periods (so they tell me) and get bigger boobs, just do chemo! Ask your doctor if chemo is right for you! (May cause nausea, fatigue, mouth sores, loss of hair, loss of immunity, heart disease, sterility, and lots of little holes in your arms.)

attitude

I got this in an e-mail a couple of weeks ago from a coworker and thought I'd post it here. Enjoy!


Attitude

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head.
"Well," she said, "I think I'll braid my hair today!"
So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.
"Hmm," she said, "I think I'll part my hair down the middle today!"
So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.
"Well," she said, "today I'm going to wear my hair in a pony tail."
So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.
"YEA!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything.

Be kinder than necessary, for everyone you meet is fighting some kind of battle.

another weird sensation

I had blood drawn yesterday. Once a month, I have a complete blood panel, which means three tubes instead of one and a mini one. I was concerned, given the state of the veins, that they wouldn't be able to get it in one stick, which would have been a drag.

I keep seeing the same phlebotomist (I request her now), so she knows what's going on, which is nice.

She used a little needle (in my hand) and a syringe to suck the blood out and was successful in one try :)

But what was weird was that in the vein, I could feel the suction from the syringe. Funky.

food, time, exercise

FOOD

Well, I reached a breaking point with food yesterday. This is ultimately a good thing, I think.

As of early May, I was eating five small meals a day, wasn't eating sweets at all during the week (exceptions when there was something tempting in the teachers' room, though the amount of tempting things had significantly dwindled), was working out (lifting, cardio, or both) five days a week. My eating was balanced, I didn't crave junk food, enjoyed many junk foods less when I did eat them (certainly not all!). Missing two days in a row at the gym had noticeable effects. It was good.

Going into the hospital essentially for three weeks (though I had 3.5 days at home near the beginning of it) knocked all of that to hell, of course. Taking care of the cancer was more important anyway — I'm not complaining.

The chemo had (has) all kinds of effects on me. The first round caused an eight-pound weight drop in four days. Besides beginning just to eat too much to try to counteract that, I reincorporated sweets that I still loved but didn't eat much because of caloric content (i.e. Nestle's chocolate chip ice cream sandwiches YUM!). Also, I wasn't allowed to eat fresh fruits and veggies or things that were crunchy or hard. Lots of tasty junk food fits within those parameters. As time has worn on, the weight-loss effect of the chemo has diminished (though not gone away completely). I also decided that it's better to be underweight (which I'm still not close to) than to have diabetes, and so I cut down on the crap ... but there's still plenty around.

Finally, yesterday, I ate more crap than worthwhile foods and decided that I need to get back into eating well. I will be eating more than I was used to, since the chemo apparently does strange things to my metabolism (wouldn't it be nice if that was a lasting side effect!) TJ has started keeping a food journal, so I'm keeping one with him now and really cracking down on myself. I feel good about this decision.


TIME
It's the summer. Regardless of treatment, I have a habit of putzing away summer days, regardless of having plenty of things I could be doing. While I was still working, I had come up with a plan to get things done every day. That plan, of course, went out the window long ago.

But since it is looking like most of my days will be good days, I need to not putz time away. Yesterday, I had a lot of energy and got a lot of things done, which made me feel good. I would like to do that more regularly. So what I did earlier today was to make a list of things I'd like to get done around the house (can't be outside, really — not supposed to be in the sun). I broke the larger projects down into smaller component pieces, though I'm sure some of them aren't broken down enough. Every day that I am feeling well and am home, I will do at least one thing on the list. By the time I go back to working, the list should be done :) I also made a mini-list of things to do every day that I feel good, which is more in line with my original plan for the summer. The first thing on the list was to make the list, and I did that today, so one thing is done ;) We'll see how it continues to go...


EXERCISE
Mom called today. While we were talking, she confirmed what the doc had said about not exercising for four weeks while the blood thinner levels stabilize. (I was more checking to see if it's something I should ask my doc when I see him, or if it's a standard precaution. For those unaware, my mom is a nurse in our family doctor's office.) In any case, I asked if that means I can't go for walks or can't go to the gym. She said walks are fine, and I clarified that they're still fine, even if they raise my heart rate. So I think I will add to my list of things to do every good day: take a walk. Then when exercise comes back, I'll already have a little space carved out for it, and I'll be in better condition than I would be without a month of walks. Yaye for a little exercise :)

hair ... again (or still?)

Well, I had some clothes and things that were just coated in hair, so I tossed them in the wash today, anticipating the hair leaving them. Whie there is less hair on these items now, there is not no hair on them, and there is additionally hair on things that were also in the wash that were previously hair-free. *sigh* I'm going to need to just go at everything with some masking tape and pick it all up that way. Bummer.

My hair is just barely long enough to grab ahold of with fingertips. It's looked the same for several days, but it comes out in bigger clumps again now (chemo working again? took a break? who knows?), so I guess the rest of it will go soon.

The water in the shower feels a little funny, as does driving with the windows down. And when I scratch an itch, that feels weird, on both my scratching finger and my head. Otherwise, not much difference between buzzed hair and buzzed-but-mostly-gone hair.

chemo #3 and the weekend

Well, the third round was on Thursday. As with last time, it took two nurses and three tries before they had a functioning IV. I could do without that drama.

I had questions about diet and the blood thinners and so on answered at my appointment ahead of time, which was good. My doc is on vacation, so it was a different doc in the office. Some of the questions I'll have to ask again, 'cause the answers are based on the doc's opinion...

I still don't know when they'll check for progress (that is an opinion question, apparently). I'm hoping it's soon. I will ask my doc when I see him.

Until this past weekend, I had been pretty tired but not sick. Yesterday I threw up for the first time in this whole process. I'm not sure if it was just my stomach, or if it was a stomach-what I put in it combo. Pineapple juice. Yum. Not bad the second time, either.

I have been having trouble staying hydrated, as water at this point tends to taste nasty. (They said some things might take on a metallic taste. It's a side effect.) So in real life, I drink water, and that's about all. Sometimes I drink tea, though the caffeine isn't good for treatments, so I haven't been. I like chocolate milkshakes and strawberry smoothies, but I'll weigh 1,000 pounds if I get all my hydration from those. The current solution? Otter pops :) My stomach tolerated them yesterday, as did my mind and mouth, so that's the current working plan.

My veins are having a tough time of it, and the phlebotomist on Wednesday said that they're getting ready to collapse. All healing energy is currently being directed to the veins. I need them to stay in good shape until either this is all done or until the blood clot goes away and we can use both arms, whichever comes first.

Many people came to visit this weekend while TJ was gone, which was nice. I made it to a friend's housewarming party, which I was glad about, too.

I think that's all from here for the moment. I thought there was something else, but I can't remember what it was. I'll post it later if I think of it.

exercise

The other thing I forgot ...

I asked the sub doc about exercise, and when I can. He said not until 4 weeks of the blood thinner being regulated, which it's not yet, which means at least another 4 weeks. I'm hoping that this is another opinion thing and that my doc has a different opinion when I see him in a week and a half.

TJ and I went for a walk tonight, and it was soooooooooo nice to get out and about. I wanted to take off (though I'm sure I couldn't have run very far), but I didn't. Heart rate might have been higher than it's supposed to go, just from walking. I'll have to find out exactly how much increase is OK. Detail-oriented? Sometimes...

In any case, I am looking forward to getting back into working out, even if the workouts are pansy compared with what I was doing before...