Monthly Archives: April 2013
Port installed, the procedure itself was not as bad as I thought it would be, but was still more involved that I expected. Incision in my chest, right under my collar bone, and a “pocket” built for my cute little port. Also an incision in my jugular – yikes! – to install the tubing that goes from the port to my jugular vein. The connection allows the chemotherapy drugs to go through my heart, and be distributed throughout my system with each beat of my heart. Pretty cool, huh?
The three heroes of today’s drama are as follows:
I LOVED my nurse, Kathy. She watched over me like a mother hen, and seemed to know what I needed, before I needed it. Not only as regards medication, but when I had an absolute meltdown right after the procedure, and in the hall to xray. She says it’s just “what I do” but I say “Kathy, you are an angel. I could not have gotten through today without you.”
My loving husband, who takes care of EVERYTHING, with barely a thank you from me, who benefits the most from all that hard, thankless work. I don’t have to worry about a thing, and I don’t have to think about a thing. He does it all, and still pulls a mean espresso shot. I was so miserable after the procedure, and a whiny baby in recovery. I complained ALL the way home about my headache, I was tired, I hurt, etc. Home now, still sore, but feeling so much better. A Dick’s Deluxe burger and a lovingly prepared espresso con panna from my wonderful and intuitive husband has kicked out my headache, and regulated my emotions, which were on a roller coaster today, as well as my blood sugar.
Making up the trifecta of heroes and heroines, my amazing and wonderful sister. I was to have testified in a trial Tuesday morning, and had no way to know if I was still needed in the morning. My sister took extra time and effort today, when she was good and tired herself, to clarify with the parties involved, and rescued me from a 4 hour car ride, 5 short hours after minor surgery. I don’t know how she does it – she just DOES. She is our father’s daughter, 100%. She’s got a plate load of drama, crapola, and shit she is dealing with, more than any single person should have to deal with in a lifetime, and she only thinks of what everyone else needs. And that includes me.
I thank God for these people. My courage is heavily borrowed from my husband, and my sister.
We all depend on the compassion and dedication of the professionals at Seattle Cancer Care.
This post feels a little all over the place, but it comes by it naturally, as that is what’s in my head and my heart today.
I am SO missing my dad today, and his appropriately corny jokes.
At 10am we meet with the nutritionist. Hmm, we’re going to talk about food, when I haven’t eaten since 6am. Who’s idea was that? And I actually agreed to this?
11:30am is “sedation assessment” where I suppose they assess just how MUCH sedation I’m going to need. Is this going to annoy me?
12:30pm they start the port placement. Scheduled to last 90minutes, then I go into recovery/observation for 30 minutes. I hope today’s observation will be like last Thursday’s. They gave me a warm blanket, crackers, cheese, and apple juice. I don’t think I could have been more pampered if I was getting a pedicure and massage.
Here we go…
Today, as you know, was a two scan kind of day. We did a CT scan, and later a bone scan.
Checked in at 12 noon for the IV contrast to do that bone scan at 3pm. No surprises there. Shortly after the nurse put in my IV, the guy from nuclear medicine was there to give me the injection of radioactive isotopes. Again, no surprises there.
As I was leaving the injection/observation room, my nurse gave me the CT contrast, a suspension in about one liter of sterile water. I was to start drinking it at 12:45, and complete it by 1:45, about 15 minutes or so before my CT scan began.
Now, I’ve had my concerns about the effects of the CT contrast. I’ve read online that this particular contrast makes you feel flush, makes you feel like you are having a hot flash, and you feel as if you have peed your pants.
So I get my contrast down in the hour allotted to me. No hot flash, no sense of peeing on myself. I just feel cold. I mention it to Ken, he says maybe I’ll be lucky, and it won’t affect me.
They come to fetch me for the CT scan, and get me settled on the scanning table. I’ve had a Xanax, so I’m feeling pretty cool about the whole thing. THEN the tech tells me, “Okay, I’m going to go get your contrast, and then we can begin.” Wha??? Wait a minute, I’m having another contrast here? Yes, he says, and once I push the contrast, you might feel a little warm. Oooo, is this the one that makes you feel like you’ve peed your pants? I’m just a little obsessed with this, as you can see.
He confirms my fears. Damn. I thought I had dodged that bullet.
WTF, bring it on.
So he comes back with the injection, says again how once he pushes the contrast I will feel suddenly flush. He pushes the contrast, and it was all too true. I flushed warm all over, in fact I was too damn hot, like uncomfortably so. The “peeing my pants” feeling was hardly worth my notice, I felt so uncomfortably hot.
The scan was over rather quickly, and the hot feeling went away very soon.
Next stop, back to the observation room. Especially as I mentioned to the tech that my tongue felt itchy. He said I was the fourth person this week to make a comment about my tongue.
The observation room is the BEST. There was an armada of wonderful nurses, checking our vitals, giving us warm blankets, offering us juice, cookies, crackers, anything we wanted! I had a wonderful time.
I paid for it, though, when the bone scan began. It is hard enough to just stay completely still, and you pray the images are good, so you won’t have to do it again. We did the standard bone scan, 17 minutes, then another five taking images of each side of my head. I’m almost free, when we get a call from the radiologist. The CT scan picked up something that doesn’t show up on the preliminary bone scan. She wants something called torso spec imaging. This will take 27 minutes. No!!!
So after another rest room break, we try to reposition me to best advantage for the camera. The problem is, I just had a mastectomy and lymph node dissection three weeks ago. I cannot raise my right arm over my head, no matter what I do. I start thinking, maybe I should have started my physical therapy before I started this whole show. Too late now.
So I interlace my fingers, as high on my chest as I can. I have no idea how long I’m in there before my feet start twitching, and my arm muscles started shaking. I ask “Are we close?” My tech says 3 minutes 20 seconds to go. Argh! But I have to push through, or I will be repeating this whole mess.
I make it through, and my tech helps me sit up. I am a little woozy and dizzy, so I take my time. Once I’ve recovered, my tech asks “So..you wanna go again?” SO funny. I start laughing, and try to take a swipe at him. I miss. Grr.
He helps me up and I put on my shoes. He gives me a paper, with the details of the radioactive materials I’ve had injected into me all afternoon. I’m to carry it with me if I board a plane or ferry. I am not a threat to people, but I may set off radioactivity detecting equipment. Oh, joy.
And we get to do this all again tomorrow.
Tomorrow we begin again with more scans. These are baseline tests in preparation for my first chemotherapy infusion. Yuck.
Tomorrow I will receive two separate contrasts for two separate scans. We are fitting them in like puzzle pieces. First the bone scan contrast, then an hour later the contract for the CT scan. An hour after that second contrast, we do the CT. That takes 30 minutes, then the bone scan. *sigh*
Friday will be a blood draw and MUGA scan, to set the baseline for my heart function. Did I mention that one of the chemo drugs causes heart damage? Oh, goody.
Next Monday I will have my port placement. I won’t be unconscious, but I will be sedated, and I will need to prepare a little as if it were a surgery. No food 6 hours before, instead of 12. I wonder if the recovery will be the same. I hope I won’t have nausea this time. I’m out of anti-nausea patches.
I just got a phone call from the medical oncologists nurse to talk about the next stage of my treatment, chemotherapy. The plan is adrimyacin (I’m sure I haven’t spelled that right) and cytotoxin every two weeks, starting after I’ve recovered from the port placement. Oh, and there will be more imagining before that all happens, a CT scan and something called a mugga, which evaluates your heart and gives the doctor a baseline from which she may monitor any ill effects to your heart from the chemo. Oh, goody.
Now we wait for a call from the imaging scheduler.
Here we are 11 days post surgery, and I feel as if I am only now coming out of the anesthesia. I seriously thought the hard part would be just getting through the surgery but no. Getting all of that anesthesia out of your lungs takes a long time, and it is so far the worst. You feel miserable, you can’t think straight, you’re nauseated, in pain, can’t articulate what your pain level actually is, you’re just in this horrible fog. Before the surgery I was most worried about what the right side of my chest was going to look like, but the reality is I just didn’t care enough about that to worry about it. I just wanted to wake up and feel normal, but maybe with a little manageable pain. That is SO not how it went. Mostly I was queasy and whiny, dizzy and feeling like I was in a big, too bright room with 7 or 10 other miserable folks in my situation.
Today we have a sizable return to normality. I don’t feel like I’m in a narcotic fog, only aware of feeling afraid of the next episode of breath-taking pain. I’ve spent the previous week so afraid of this pain that I will not risk moving from a reclining position, and worrying that I’m doing recovery “wrong” as my shoulder is now so stiff that I can barely lift my arm high enough for Ken to change my dressing or empty my drains.
But today, after we came home from the Women’s Center at SCCA, where I had my second and last drain removed, I managed to keep so well ahead of my pain, that most of the day I’m down to one pain pill every 4-5 hours, and was much more alert and functional throughout the day. I seem to have greater range of movement, and have forgotten my pain enough to use my right arm to push off from the chair twice, without immediate consequences.
However, I notice I am becoming a little more sleepy and dizzy, and will need to shorten this post. I think this is because I took two pain pills instead of one. I’m hoping I can down to one pain pill before bed tomorrow, and maybe switch to ibuprofen the day after that. Who knows? Perhaps in the not-too-distant future, I may actually be able to wash my hair myself.
Type at you later,
Tina has seen her surgeon and is healing well. We have one more surgical drain to get out today. Soon showers without plastic and tape will happen and Tina is looking forward to that.
It has been a harder recovery than expected… because Tina does not do well on pain meds and there has been some muscle spasms… So we have had pain, dizzyness.. nausea etc.
We have pills and a patch for all this.. but it is a balancing act… We are improving.. it feels like this could be the week thinks start to get more normal.
Monday and Tuesday AM it looked like we were going to glide into an easy recovery….
That may be why Tuesday was crash day for me. Late Monday night I hit a wall of stress after we did her first shower. Surgery drains, newly uncovered stiches, plastic to keep things dry etc. Once we finished the stress of not “breaking” Tina hit me and then some. Pretty sure I am releasing stress I felt very little as I managed the last few days.
I slept hard.. and then Tuesday morning was mentally exhausted.
Tuesday AM Tina was up and doing chores.. I told her not to….
Then something got pulled there was sudden pain and the last two days have been tougher.. Periodic pain spasms etc. I seem to remember my triple wisdom teeth extraction was like this… it got better for 4 days then I had 1-2 days where it was really bad.
She is healing and we are in communication with the DRs… but right now pain management seems to be #1. Her surgeon thinks it may be that she didn’t keep ahead of the pain.. from what I see.. pain hits. creates stress .. creates more pain… Lesson of the day.. when you get a body part cut off.. its ok to take pain meds for a few days and not worry that you don’t really need them..
Thursday AM.. I am getting a bit better sleep but needing to use ZZZZQuil tabs to get down the last three nights..
I totally checked out from work…the last two days (which I hate… but I was mentally useless for intelligent work) watching email for emergencies etc. but I thought we were on track for an easy recovery week one…. not so much..
Michaela is sleeping on the couch to be close to mom.. and has been doing a good job letting me know if Tina needs something.. What good kid.. but I worry she is stressed and not willing to talk about it.
At some point we might get her some time with a consoler ….just to make sure.
Tomorrow we see Dr Javid who has been great this week.. even dealing with a problem where her resident didn’t return 3 calls in a row.. (she dealt with that pretty fast and it never happened again…)
And for those keeping score at home and who have bets pending with Vegas bookies… pathology game back…
- Tumor… 12 Centimeters (5 inches!) Sorry for those who bet on a more normal size…
- Single Mass… Good…
- Clean Edges Good…
- No skin or chest wall involvement.. good..
- 2 lymph nodes of the 24 removed affected good given the size…
That makes the final stage 3A which is where we were last week…. Sorry I have checked with Vegas and no one had all it all right.. so no jackpot winners this week..
Joking aside it was big hummer..that came from no where and was undetectable 10 months earlier by a DR doing a breast exam, and was even hard for them to spot on imaging when they were looking for it… Get your tests.. do your monthly exams etc.and get weird stuff looked at right away people!!!
That said it appears to be a lazy SOB of a cancer which is good..content to sit in one boob and get fat vs going out to explore.. so in general pretty good news.. Given SCCA’s stats on all stage 3 cancers.. I think we still have a very positive prognosis…