Posts Tagged ‘oncologist

19
Aug
10

who’s telling whom what?

We went in to see Dr. Medici today expecting to tell him that I was quitting chemo; instead, he surprised us by saying that another chemo would probably do more harm than good. I’d figured on having to convince him, and he thought he’d have to convince me.  So, no chemo for me.

Also I had fluid build-up in my abdomen again (ascites, pronounced ah-sigh-tees) & had 3.5 litres drawn off (when I was in the hospital, they only got 2.1 litres).

All for now,

17
Aug
10

how are *you* doing?

I’ve been out of touch for so long, and wondering how my friends are doing. E-mail (home, not work) is best, or a comment on this blog.

We see the oncologist on Thursday (way too early) to decide when to resume chemo. I’ll let you know what we decide.

12
Jul
10

. . . and Fuzzy on Top

If you compare it to the couple weeks *before* I started the anti-depressant, I’ve been pretty busy:

Cousins Greg and Jeanette came for a “just chatting” visit on a Sunday.

July 4th we went to our neighbor’s, Sharon and Gary, for Independence Day and had a fantastic feed. All four dogs were there and were generally quite calm about the fireworks.

Last Wednesday we had dinner at the Harborside with our friends Shawn and Hope. They’ve always got dozens of funny stories to tell.

Last Thursday Cathy came to visit, and took a picture of me nodding off as she was talking to me. She swears my mouth was not open!

The common ground that all these items have is that I was feeling better emotionally, and my stamina is returning, but that I was totally wiped out at the end.

But with a couple little tweaks in the meds, I think we finally have a winning combination. Too bad I’m scheduled to start chemo tomorrow just when I’m starting to feel good. We’ll find out if the “happy” drugs can hold up their end against the chemo.

In other news, I was scheduled to go to a memorial service for my aunt that died. A couple days before the memorial, I got hit by some sort of intestinal bug that lingered for another couple days after. Brian went and said it was a lovely service.

And a couple nights ago I had a fall. I’ve been using my library steps to climb into bed (but I slide off the bed directly to the ground). This is working pretty well, for the most part. I always pause to see where the dog is before I slide off, and he usually is already up and moving by the time I stop to look. I’m not sure what went wrong this time – all I know is that I must have stepped down on the bottom step, because I felt myself slip and had no way to catch myself. As a result I have a bruised toe that was just healing from having lost the nail (chemo-related); and bruised shin, thigh, and hip on my left side. Ouch!

I will report on the start of chemo – there is a chance that he and I may disagree and we’d delay it for another brief while; I’m quite intent on improving the quality of my chemo life, and he’s all yelling “Treat! Treat! Treat!” We’ll see who’s got the greater will power.

23
Jun
10

The Silence of the Cancer

On my little break from chemo, please don’t be surprised that I am being so quiet – only a little blogging, no phone calls or e-mails. Now that I’ve had time to quit wallowing in the cancer and its treatment, I’m wallowing in my depression. My normal depressive behavior is to do just that – withdraw and keep my feelings to myself.

Fortunately for me, I’ve got Brian here to help keep me sane.

I met with my counselor, Counselor Troi, today, and she took a lot of notes, with the end result that she doesn’t know how I’ve managed to go so long without an anti-depressant. So tomorrow I start one (sorry, the name escapes, me).

The bad news about that is that it’s going to physically depress me for a couple weeks – i.e., low energy, etc. Right in time to just about the time Dr. Medici wants me to start chemo again.

So how am I going to know if it’s working?

Also, Nurse Serenatia called today, and told me what I already knew – it’s going to take months to get back my energy to where it was – months I don’t have.

Thus ends the homily on depression for June 23, 2010.

26
May
10

What Dreams May Come

I’m not so concerned about those *after* I have shuffled off this mortal coil as I am taken aback at the intensity of some of the ones I have under the influence of either chemo drugs, pain medications, or the combination.

I usually don’t remember them, mostly I remember bits and pieces (this one involved a lost dog somehow, or that one was a scary one involving people being tied up, possibly in a home invasion scenario).

What I do remember is that they are often disturbing on some level, even if I don’t remember the specifics; I can still feel the fear or strangeness that pervaded the dream.

I’ve mentioned them to the doctor before, but Brian is lobbying for me to tell him again. I figure it won’t do any good if I can’t give him details, but maybe Brian’s right, and just knowing that they’re scary dreams will give him an angle to work with.

18
May
10

Three Scans for the Price of . . . Three

But first, results from last week’s scan!

Good news all around – the largest tumor has shrunk from 9.4cm down to 7.9cm; several of the other tumors also have shrunk; and some that haven’t shrunk outside are becoming necrotic inside, which probably means that the Avastin is preventing the blood flow leading to them.

So, yay!

As well, at 2 months, what they’re really looking for is to make sure that the tumors aren’t still growing, but often what you see at that point is that they’re stable, neither growth or reduction. The shrinkage, therefore is actually very good news.

So, double-yay!

My spleen is slightly enlarged, which isn’t of concern yet – Doctor Medici says there are blood vessels leading from the liver to the spleen (I think this is how it went, chemo brain is to blame if I’m saying wrong, not Doctor M), and they can get a little congested. At any rate, it is possible that it is lowering my red blood count, and may in the future have an impact on whether I can continue with this chemo regimen; but for now we want to go with it for as long as my body will tolerate it, since it’s having such good effect.

I also have some pleural effusion in my left chest cavity – a build-up of fluid in the space between the lungs and the chest wall. I believe this accounts for the chest symptoms I’ve been having, and also for the anxiety attacks, which I’ve been having a bit more often. Dr. M. doesn’t believe that, but I do – I know my body, and I’ve associated the anxiety with the feelings of pressure or compression in my chest, and the feeling that I can’t breathe as deeply as I want; and that was before I knew there was something in there.

However, the thing that most concerned Doctor Medici was the swelling on my left hand from last week. He was concerned that there might be hidden heart damage or a blood clot in my arm that was causing edema, and so he wanted me to have a vascular ultrasound and an echocardiogram in the next couple days.

I went in to the infusion suite and had my chemo, and when I came out, Nurse K. had scheduled me for the ultrasound at 3 pm and the echoCG at 4 pm. Fortunately, our savior driver cousin Jeanette was able to stick around and take me back to the hospital, and even had some personal business there herself, so that all worked out.

The ultrasound was given by a student, and one of the staff doctor/technicians was there to walk her through it. I was hearing comments like “Where is this thingy?”, “Show me that thingy,” “Show me that thingy in color.” I was seriously wiped out from the chemo, and all I wanted to do as I’m lying there was sleep – surprisingly, I ended up feeling pretty rested after that, so maybe my steroid high was kicking in.

They ended up taking a close look at the port and its environs, and the doctor/technician asked me a lot of questions about it. They ran over into my other appointment by about 10 minutes, and were looking intently at the results of the scan when I came out of the room. I had to wait a few minutes for the next test, even though I was late; and while I’m in having the echocardiogram, the ultrasound doctor stuck his head in the door and said:

“I just got off the phone with Doctor Medici, and he wants her to have a CT scan this evening – we’re getting it scheduled now.”

I called Jeanette to let her know that she shouldn’t wait any more, but didn’t get hold of her, which I figured meant she was out in the waiting room. We finished the eCG, and while I was changing the eCG doctor went out to talk to the other doctor. When he returned he said that the CT scan was scheduled, and I should just head right over there. When I got to the lobby, sure enough there was poor Jeanette, waiting patiently – I really appreciate the fact that she took so much time out of her life to drive me around, and to wait so long, but I didn’t know how much longer it was going to be, and figured she needed to get home to her family. After she left I called Brian to fill him in, and have him pick me up after the CT scan.

Once I was over in the radiology department, I got in pretty quickly. Nurse S. asked me why I was there, and I had to confess that I didn’t really know. All I could do was speculate that the ultrasound had detected a possible problem in my left chest/arm area, but nobody had told me what was specifically being looked for (and yes, I did ask the eCG doctor, who was the only one there by the time I was done with that test, but he didn’t know anything about it, just that the scan had been scheduled and where I was supposed to go). So he (Nurse S.) went to talk to the CT doctor, and it turned out that they were scanning the left chest and arm to look for venous clots, as I had guessed. I was still confused with why they needed a new scan, since I’d just had one on Thursday last week, and it was after the swelling symptoms had been and gone; until Nurse S. reminded me that normal chest CT scans are done with both arms above the head, so the arm is not imaged. Ah, of course.

Brian was waiting for me as soon as I was done, and we came home and made dinner, and were hanging a couple new pieces of artwork on the wall when the phone rang.

Dr. Medici was calling to let me know that the ultrasound doctor had detected some apparent slowing of bloodflow into the arms, which seemed as if it was coming from the middle of the chest; this is why Dr. M. requested the CT. The CT however, didn’t detect any clots or other problems, so unless the eCG results come back with something odd, everything seems as it should.

So that is the story of my big medical day, and My Three Scans.

14
May
10

My Least Favorite Rollercoaster

Well, one of the topics we discussed with Dr. Medici on Monday was progress scans on the chemo regimen. He said that it had been nearly 8 weeks, and since we were rescheduling the chemo, why not do them this week?

I was floored, as I understood that scans happened every 3 months – Brian was under that impression also, but he said he remembered hearing 2 months originally, but then everything he heard after that was 3 months.

Apparently we were so shell-shocked in the first meeting with Dr. Medici, just finding out that the tumors were indeed cancer, that what we missed/got confused about is that with a new chemo regimen scans are performed at 2 months, and then each succeeding 3 months as long as you’re on that regimen. And once you switch to a different chemo regimen, you have a scan at 2 months, then each succeeding 3 months. The tricky part is if the 2-month scan shows that the disease is progressing, you get switched to a new regimen, so you’ll have a scan in another 2 months.

At any rate, I jumped at the chance to have scans 4 weeks earlier than I was expecting, because the waiting is the hardest part (how petty of me ;-} ). So I had a scan on Thursday morning early.

Late Tuesday afternoon, his nurse called with the results of my CA 15-3 tumor marker blood test results: the number was down by nearly half – excellent news, yes?

Maybe. There isn’t a specific correlation between the amount of tumor marker in the blood and the size of tumors that is true for every person. For instance, when I had my recurrence, I had a tumor that was a little larger than the largest of the original tumors, and my CA 15-3 was somewhere around 9 or so. We did not check my tumor marker with the first set of tumors, since I had the surgery before I ever met with the oncologist, so I can’t say what it was at that time. But 9 is a perfectly acceptable “normal” level, one that an oncologist would expect means there is no tumor.

My prior tumor marker level at my latest oncology followup was 10 (I believe that was in July, but it might have been November, I’ve lost track of specific dates). And when we measured it at the time of diagnosis in March this year, it had soared to 1622. Knowing that there’s at least 1 tumor of nearly 4 inches diameter, other, smaller tumors, and multiple lesions on the liver, that seems to indicate aggressive growth in a short timespan.

But does the halving of the tumor marker mean that the tumors themselves will be halved in size? Probably not, although it is likely a good indication that the chemo is having some effect on the cancer. Dr. Medici says once we get a few scans and tumor-marker measurements, we should be able to figure out *my* personal marker-level-to-tumor-size correlation. It would be awesome if it was 1:1.

So why the rollercoaster?

I’m still adjusting to the idea that I have a terminal disease, which is pretty depressing.

Yet the hope that springs up when I’m told that the tumor marker is down is hard to repress. If we knew what that *meant*, it might be that I have every reason to hope that there has been significant progress; it also might be that it only means that the chemo is good at killing off the tumor markers in my blood, but not good at killing off tissue-bound tumors.

But of course, statistics don’t lie. It’s just that you never know where your position in the stat table is, until something actually happens.

So I’m trying to maintain a balance between hope and statistics – it’s a thin line, and it’s hard to keep your footing.

We’ll find out Monday what the results of the scan are, and there’s 2 out of 3 chances that I’ll remain on my current regimen – if there is progress in shrinking the tumors, or if there is no change in the size, I’ll continue as is; but if there is growth, we’ll be switching me to a new regimen.

Dr. Medici will hopefully have the results soon enough this afternoon to be able to make that decision, because if I’m continuing the same regimen, I will have chemo on Monday. If it’s changing, I’ll have chemo Monday only if he is able to get the new drug in on time.

Hate it or hate it, you gotta love chemo when your life depends on it. . .

26
Apr
10

Chemo #4 – The Great Scrabble Hustle

Laura came to my chemo session today, which also involved meeting with the doctor. Fair warning: I told her this might give her tmi about my bodily functions, and told her I could come get her when it was time for chemo; but she decided to tough it out. I think she was a little flustered by the end.

And fair warning to readers: euphemisms ahead. If euphemisms are still too much for you, I recommend you skip this post.

This week I met with the gynecological oncologist who removed my ovaries (this is not a euphemism), because about 1 or 1-1/2 weeks into chemo I developed what seemed like an abrasion that had a lump associated with it down in my lady parts (euphemism). I thought at first it might be an ingrown hair causing an abscess (non-euphemism), but not being a contortionist was unable to get a good look, and it eventually cleared up to just being a small lump under the skin. It actually took another week or so for me to have a paranoid attack about whether someone (well, OK, women specifically), can develop cancer in their flower petals (euphemism).

So in my meeting with Dr. Sweetheart, she reassured me that although it was possible to have cancer there, it much more likely is a cyst or a healing abrasion, ingrown hair, or other injury-type lump. If it hasn’t completely cleared up in the next month or two, we’ll do a biopsy, but I’m no longer totally paranoid. As to the cause of the lump, I would have to relate that with many more euphemisms than even I care to type; so let it simply be said that it is still a mystery. However, the conversation regarding cause led to many more euphemistic-laden subjects, and neither Doctor Sweetheart nor I flinched, but I sensed some going on in my peripheral vision.

Suffice it to say that Brian and I are scheduling a date night for my next chemo break-week (euphemism).

Last night, Laura had suggested that I download Scrabble to my iPhone so we could play during chemo. We chose some recliners over in the corner, and passed the phone back and forth. Now, I’m a pretty good word person, and I know some pretty good $20 dollar words. I even know some pretty good $50 words; but seriously, what kind of word can you make with the letters NEELNER? or UUSKINI? and why, when Laura was getting all the “bad” letters (Z, X, Q, etc) was she not only able to make words, but get all the Triple Letter and Triple Word scores? I, sirs, have been hustled.

Next time, I’ll have to play the cancer card.

02
Apr
10

Chemo #2 – questions, questions, low on blood

Today was a “meet with the oncologist” chemo day. Lab first, meet with the doctor, then chemo.

As usual, we pretty much drowned Dr. Medici in questions. I think he was shocked and a little awed when he saw the list I was reading from. But most of them were quick, easy answers (talk to so-and-so, yes, no, go here, do this). There were a few that got a bit more in-depth, and so our meeting went to 45 minutes instead of the scheduled 30. He’s told me before that he only has one patient who asks more questions than I do, and he says that my questions are usually pushing the “boundaries of oncology”. I think he meant that in a good way.

The best answer was that the pain I’m feeling in my liver *might* be the tumor shrinking. Since the cells are attached to the liver cells, it can cause pulling when the tumor shrinks. We don’t know that this is the cause, but knowing that it could be makes me feel a lot better.

He also approved of going back on nearly all my supplements, and thought it was a good idea, even; especially the Vitamin D and calcium. The one that I have to avoid is the fish oil, because I’ll be starting Avastin next week, and the fish oil could increase the likelihood of bleeding problems. Avastin is the drug that inhibits the growth of blood vessels, and had to be delayed due to the liver biopsy on the 18th. Basically, the inhibition of blood vessels means that wounds don’t heal as fast. Apparently the port placement surgery doesn’t count as a wound, but the needle-pokes into the liver do.

When the nurse came to prep me for the infusion, he said that my wbc and neutrophil counts were very low, so I need to have Neupogen shots every other day for the next week, and a Neulasta shot next Saturday. These are drugs that help your bone marrow start regenerating white blood cells, and neutrophils in particular. In the meantime I’m immune-compromised, although a couple Neupogen shots should help pretty quickly. I’m hoping that by next weekend I’m back into the non-compromised range, because we have tickets to see Mark Knopfler next Saturday evening (dammit, I bought those tickets last September, and I’ve been really looking forward to this concert. Damn you, Cancer! I already had to cancel my New Zealand trip, and am unable to attend my girlfriend’s wedding. Just try and stop me, just try. I’ll get you my pretty, and your little Death of Rats, too!).

The doctor thinks that this’ll probably be an ongoing problem, and so we’re getting pre-auth from the insurance company for me to do my own Neupogen shots. It’s the same process as for giving myself the Lovanox shots that I needed to have after I had the pulmonary embolism. Then I won’t have to go in to his office to have the nurse inject me, which will be nice.

I had developed quite an attitude about giving myself shots in the belly, I think because I felt like I *should* have an attitude. It didn’t really hurt much if you poked the needle in quickly, and the worst part was the burning as the Lovanox was injected. When I realized that I was freaking out over something that wasn’t such a big deal, all of a sudden I stopped dreading it, and it became routine. I figure that’s what’ll happen this time, too.

Fortunately, I’ve got enough belly fat that I have plenty of different locations to give the shots, so I won’t be getting sore in just one spot. I’ll be getting sore in a whole bunch of different spots ;-}

My next big task is deciding what sort of haircut I want before my hair falls out. I’ve got another week or two before I start losing chunks, and I really don’t want to have hair everywhere. I picture myself as a progressively less hairy PigPen, wafting clouds of drifting hair behind me. Ewww. Just ewww.

After my first cancer diagnosis, I talked about getting a dragon tattooed on my head, because dragons have always been a protective symbol for me (and my friend Cathy hand-drew a henna tattoo of an awesome Chinese dragon on my bald skull, after waxing the skull first. Ouch.). The idea that I wouldn’t ever get cancer again because of the protection was tempting, but once my hair started growing back in, I just decided not to do it.

Then, of course, I got cancer again. That time, I was so emotionally and mentally acting like an ostrich that I couldn’t even have fun with the bald skull. I kept the stubble down, and that was about it.

This time, I’ve decided that at some point in a treatment break that I’m going to get a tattoo on my skull. But I’ve decided that now, instead of a dragon, it must be a phoenix.

29
Mar
10

Chemo #1 – It took two nurses to hold me down. . .

Which sounds a lot worse than it was.

Due to having had two previous ports in the same spot on the right-hand side of my chest, the surgeon decided not to even try to put one on that side, which left her with the *left* side of my chest (just checking, really, that *I* can still get it right – I feel incipient chemo brain slithering through my grey matter, and yes, in this case, left *is* right!).

Because of the additional lumpectomies/chest excisions on the left side when I had my recurrence, there’s a lot of scar tissue on the left side also, so she had to place it up and back towards my armpit. Being in this highly inaccessible tube (anyone who gets that reference is my geek-god (or maybe freak-god) – I can only think of one for sure, and another two possibles. . .), it was very difficult for the nurse to access the port. Plus there was edema built up around it, so Ll & R. dragged the chair out into the middle of the infusion floor, had me lie back on the recliner, and R. held down the tissue around the port while Ll. accessed it. After the chemo was all over with, R. managed to get a lot of the excess fluid out of the area, so not only will it be easier to get to this Friday, but it has also made it easier to sleep on my left side.

Saturday was actually pretty manageable – we went out to celebrate our 13-year anniversary at The Melting Pot (what? melted cheese, melted chocolate, does it get any better?).

Saturday night, though, I went to bed at 10:00 p.m., climbed out of bed at 1:00 p.m. Sunday, slumped down to make some coffee and sit in my recliner, and after about 3 sips of coffee, fell back asleep for another 3 hours.

And my hair hurts.

25
May
09

Crawling out from under

In this case, out from under the weight of chemo and its side effects.

Because of the pneumonia on top of the chemo, and how wiped out I was, I ended up taking 5 weeks off work, basically all of April plus a little bit of March and May. I spent a good portion of that time sleeping, and pretty much didn’t leave the house at all. Brian ran any errands that needed to be run, and I read when I wasn’t sleeping. Hooray for online grocery shopping with home delivery, and for Dinners Ready!

Back before I got pneumonia for the second time, Brian and I had planned a celebratory trip to the coast for the beginning of May – we hadn’t been able to properly celebrate Valentine’s Day, our 12th anniversary in March, or my birthday in April; and we wanted to celebrate the end of my cancer treatment. So we made reservations for three nights in Cannon Beach, the 1st, 2nd, and 3rd of May, at the Tolovana Inn, just two weeks after I had my last chemo treatment.

On the 1st, we packed up ourselves and Robin and headed to the coast. We had lunch at Camp 18, and checked into the Inn around 2:30. Our room was on the third floor, and so Robin had his first experience with an elevator. He was fascinated by the opening door, cocking his head, and stretching his neck to get a look at the inside. He walked in with no hesitation and sat down on command, but when the door started to close, it rattled and clanked and freaked him out so that he tried to back away from it as far as possible. The movement of the elevator itself didn’t seem to bother him, and by the end of the weekend, after we started rewarding him with treats for sitting and staying sat while the door was closing, he got over his worry and was perfectly fine with it. The noises of the elevator moving and the pings at each floor made him tilt his head in interest, so all in all, his first experience riding an elevator turned out to be a positive one.

Our room didn’t have a bedroom, it had a murphy bed in between the kitchenette and the living room. It was pretty comfortable, but I kept stubbing my toes on it when it was down.

We didn’t do huge amounts of stuff, because even though I was starting to feel better and the chemo side effects were diminishing, I was still pretty much a lump of pain and exhaustion, only with brief spurts of energy. Happily, my sense of taste and smell were well on the way to getting back to normal, so our meals were enjoyable even though I didn’t have much appetite. Each day we took Robin down to the beach to let him run around – he loves to run on the beach, so Brian would throw a stick for him or chase him around, or we’d get him to run back and forth between us. On Saturday there was a major wind/rain storm (same as in Portland), and the wind was blowing so hard that it was parting his hair on his side – fortunately, since I had so little energy, we were only spending 15 or 20 minutes on the beach at a time, so we were on the way back to our room when the rainstorm started. It was nice and cozy in our room watching the heavy rain blow sideways; but kind of creepy listening to the wind screech and howl through the front door, and clang something on the roof.

Other than that, we took a brief turn around the downtown area, windowshopping and stopping for lunch – Robin got lots of attention and several people wanted to take pictures of him; Saturday night we went to a musical put on by the local community theatrical company (quite fun!); had a nice romantic dinner at Newman’s at 988; played cards and word games in the room; read; napped; and just generally relaxed. We drove home on Monday the 4th.

Tuesday the 5th I started back to work half-time – that first week, I came home and took a couple-hour nap each day, and still slept through the night.

As I was going through my e-mail inbox that first day, I came across an e-mail from my friend and co-worker Jenny – she’d once again set up a team from work called “Supporting Julie” for the annual Making Strides for Breast Cancer walk on the 9th of May. Brian signed up to walk, and I went with him, although I wasn’t up for actually walking. Many of my friends from work came – Leah, Carrie and James, Kristen and her husband Bill, Jenny and her family (including her in-laws, who were nice enough to go walking on their vacation!), and Becky, who started at Schrodinger just before I started medical leave, so I haven’t gotten to know her yet – wasn’t that sweet of her to walk for me? The company I work for is called Schrodinger, and the team t-shirts always feature the name of the team and the company name if there is one. This year, the way they printed the shirts, the team name came out looking like this: Supporting Julie Schrodinger – all on one line, so it looks like the team was supporting Julie Schrodinger ;-} Thank you, Jenny, for taking the time to organize the team and to walk for me! I waited at the plaza that was both the beginning and end of the walk, and had a nice little nap while I waited. It was a beautiful day, and Brian took Robin on the walk – Robin had the usual freakiness about walking on the Broadway Bridge (it’s very noisy, and shakes and rattles from the traffic – heaven forbid that a big truck or bus should pass over while he’s on it!), but other than that he enjoyed the walk, and all the attention he got – one lady came over to pet him at least 4 times over the course of the morning!

I worked half-time again the next week, and it was better – I didn’t end up having to nap each afternoon once I got home, although it was tempting.

The weekend of the 16th/17th we spent in Tacoma – way back months before, we had purchased tickets to the Fleetwood Mac show at the Tacoma Dome (I actually bought insurance on them in case I wasn’t well enough to go, knowing it would be just a month after my last chemo). We had planned to leave Robin with our friends Sharon and Gary, but when I called my 93-year-old aunt to see if she was going to be in town for a visit, she not only insisted that we spend the night with her instead of at a hotel, but that we bring Robin, and she would dog-sit while we were at the concert. We got there around 2:30, and Robin just went nuts when he saw Aunt Julia – he remembered her from previous visits, and really thinks of her as part of his extended herd. We had an early dinner, then Brian and I headed off to the show – she only lives about 15 – 20 minutes from the Tacoma Dome, so it was no problem to get there, and traffic wasn’t too bad. The show was awesome – Lindsey Buckingham’s voice and playing was as good as we expected (we saw him solo in Portland a couple years ago, so had a pretty good idea what to expect); John McVie was the quiet stalwart he always is; Stevie Nicks was her usual lacy, floaty self, but I don’t think her voice has held up as well as Buckingham’s – she no longer was hitting the high notes on her songs, opting instead to harmonize with a lower note, which was kind of disappointing; but for me Mick Fleetwood made the show. I’d seen him in 1993 or ’94 with Fleetwood Mac, although neither Buckingham nor Nicks were touring with them – he was incredible then, and he was incredible this time, also. He is so into what he’s doing, you can just see it on his face, and he’s obviously having a blast. Our seats were good, but low enough that we couldn’t see him over the drums, so I found myself watching the screens a lot in order to watch him play. Wow – he’s intense!

When we got back to Aunt Julia’s, she said that Robin spent the first hour sitting and watching the front door, and both times he asked her to go out, he wasn’t interested in going potty, but wanted to go in front to see if we were out in the car. He spent some time lying in the guest room where our suitcase was, but then came out and lay down against her feet and they spent the evening watching TV. We chatted for another hour and watched part of Saturday Night Live before heading to bed. Sunday, we slept in, had a lovely breakfast and visit, then headed home. I napped a good portion of the way.

Last week I bumped my hours up to 3/4-time, and the first day I worked from home, which was good, because I was so wiped out I needed a couple hour nap once I logged out. The rest of the week went pretty well, and although I was tired, I wasn’t exhausted, so my stamina is slowly coming back.

Friday we had my one-month follow-up with the oncologist. He started me back up on the Femara, the anti-hormone treatment – I’ll be taking it for about 5 years (he said by then they’ll probably have a study that shows that 10 years is even more effective, so don’t plan on stopping then. . .). His only real concern was that since I’m still having muscle and joint pains that I might get worse because that is also one of the common side effects of the Femara. I don’t remember having a lot of problem with that – maybe some when I first started, but I don’t think it was too bad. I started taking it again on Sunday, and so far it isn’t getting worse, so hopefully that won’t be an issue.

He also said that I could get my port taken out any time – I had to wait at least one month post-treatment because the Avastin can cause bleeding problems and wound-healing complications. It’s an in-office procedure for the surgeon, so even though I’ll probably have to take a mild sedative, it’ll only be a local anaesthesia, and I can just take an afternoon off work to get it done.

Other than that, I asked him about my vision – I’d noticed that I was having some vision change during the treatment, and was having trouble reading the computer screen – he said that any chemo-related vision change should be gone for sure in 3 months. It’s definitely been getting better, but my lenses are getting old and the coatings are coming off, so I need to get new glasses, and wanted to make sure that I didn’t get my vision tested while there was still some chemo-related effect.

My peripheral neuropathy has been diminishing significantly, to the point where I haven’t been noticing any numbness or tingling, although the motor control is still not back to normal. I decided to stop taking the Glutamine, and took my last dose Saturday – as of this morning (Monday), I’m starting to feel some numbness and tingling in my fingertips again. Guess I’ll keep taking it for a while, although I think I’ll start with a lower dose and increase it if that doesn’t take care of it.

This weekend we have just been lazing around the house, relaxing, playing with the dog, and enjoying the weather outside.

So there’s the update – I’m caught up, and believe that with my stamina starting to increase, that I’ll probably be better about posting. No promises, but I’ll try!

04
Apr
09

pneumonia vs. chemo

I’ve been really wiped out the last couple weeks – even though I started the antibiotic over a week ago, things were worse at the beginning of the week than before. As of yesterday, I felt about the same as I did last Friday when I was diagnosed, so the antibiotic doesn’t seem to be helping, which could mean that this is viral pneumonia.

I don’t remember if I went into this before, but pneumonia isn’t a description of a single illness – basically it refers to any infection of the lungs, usually involving inflammation and collection of fluid. It can be bacterial, viral, fungal, or parasitical. So even though I had a pneumonia vaccine in November 2007 that is good for 5 years, the vaccine doesn’t cover every possible source of infection – as a matter of fact, it only covers bacterial infection by the pneumococcal bacterium; and then only about a quarter of the varieties of pneumococcal bacteria out there. So even with its protection against the most common bacterial infections, there’s a ton of other stuff out there that could get me; and with the compromised immune system, even the ones that are covered under the vaccine could still be suspects.

At any rate, when we went in for chemo yesterday, the oncologist expressed concern that I wasn’t feeling better on the antibiotic, and that my white blood count was so low – however, he decided to proceed with the chemo, with strict instructions to report any increased chest symptoms immediately. And if I’m not feeling better by next week, he will probably send me in for another chest CT scan.

Even with the already low white blood count, but with a good neutrophil count (the bacteria-fighting white blood cells), he decided against having me get the daily Neupogen shots next week – they are one of the two ways of getting your bone marrow to start producing white blood cells. The other is only given when there’s at least two weeks between chemo sessions. However, the bet is that as of next Friday, when I go in for my !!SECOND-TO-LAST!! chemo, I will probably have to have them the next week. That’s kind of a pain, since I really don’t feel up for driving these days; fortunately Brian is usually working from home in the mornings, so it’s just a matter of struggling out of bed earlier than I usually can.

I’ve been sleeping a lot, although the last three or four days I’ve started waking up in the middle of the night and being unable to get back to sleep for 3 or 4 hours, but then sleeping hard until late in the morning. I’m not sure if that’s a good sign or not – I’ve been trying to avoid daytime naps since they’re probably one of the culprits (I was only up for 5 hours one day, usually around 8 hours most days for the last week and a half before that). But maybe it’s a sign that I’m finally going to start getting better?

But then there’s chemo. It really has sort of rocketed to my brain this time – I was talking to Brian last night and didn’t remember something that we’d talked about just 5 minutes ago. Hmmm. I’m having more stomach and intestine problems this time around, and the pains are already calling for the good stuff – the morphine. Fortunately I only seem to need it at night, since Tylenol is currently managing it during the day. But even sitting typing, I can feel the tingling in my fingers that means the peripheral neuropathy is escalating. Thank goodness I’ve only got two more sessions! Yay!

Thank you to everyone who is sending all the love, good wishes, positive energy, and prayers – I appreciate them all. It is both motivating and healing to know how many people care and are thinking of me. I think of you-all often, myself, even though I haven’t had the energy to make contact. Hopefully that will be on the mend soon ;-}

27
Mar
09

OK, this is not funny anymore. . .

. . . I have pneumonia. Again.

The doctor doesn’t know why – I don’t think he really cares why, he just wants to get me over it so he can keep poisoning my body.

Which, most likely, is one of the reasons I have pneumonia again – the compromised immune system can’t beat back those germs that healthy people shrug off every day. At least we caught it early again; apparently I am ultra-sensitive to the pressure of fluid building up. Interestingly enough, it is only happening in my left lung, which is the same as the last time. The pulmonary embolisms were one in each lung, but I’ve long had pain in my left chest (heart problems ruled out); and the cancer was in my left breast. No wonder they call it sinister!

The first round of pneumonia responded to Levaquin, which is a very potent antibiotic. On second thought, maybe Dr. Medici is gleefully rubbing his hands together going “mwa-ha-ha-ha” that I have pneumonia, because seriously, this stuff has the potential to be as bad as Taxol and Avastin – it can cause temporary or permanent nerve damage, bleeding problems, seizures, hallucinations, and tendonitis or tendon rupture, amongst the five pages of warnings that came with the cute little bottle.

At any rate, one of the problems it can cause is sleeplessness, and right now, as tired as I am, I cannot sleep. Of course, I couldn’t last night either, so it may be totally unrelated to the Levaquin.

So anyway, that’s how *my* week is going. I’m mildly depressed, and massively annoyed at being sick again – hey, chemo by itself is enough. But Brian is back home from his trip, and that’s wonderful, and the cats have been very cuddly recently. . . hmm, I seem to recall that they were pretty cuddly back the first time. I guess they’re pretty sensitive to this, also. Great – now whenever one of the cats wants to sit on my lap, I’m going to get paranoid. I mean, I woke up this morning with a cat lying on top of me purring – and today I’m diagnosed with pneumonia. Cats as diagnotic tools – guess I won’t go there about whether he was doing a scan or not. Oops, sorry, I went there.

12
Mar
09

So obvious. . .

. . .when I actually stop and think about it.

I have been so down, both physically and emotionally, that I haven’t been *really* thinking. Mind spinning, but nothing getting accomplished.

Finally, this week, I was so wiped out that I physically had to stop. The doctor told me I needed (well, OK, sort of *ordered* me) to limit my working hours, because my numbers haven’t been bouncing back very well. I have worked from home 1/2-time this week, and although I’m still very fatigued, and so weak that I could barely walk all the way out to the back yard to sit in the lovely, lovely sun, I feel better emotionally than I have in a long time.

One of the first things they tell you in the support group/class is that you have to take care of yourself.

I have been so focused on trying to be strong, and trying to miss as little work as possible (hey, it *is* the second time in 1-1/2 years I’ve had cancer, and I missed a lot of time last time around, even though it was FMLA time, and unpaid), and trying to do everything I can do when I’m healthy, that I had myself convinced that using DinnersReady to have meals in the freezer, and working full-time, just from home when I didn’t go in to the office, constituted taking care of myself.

How blind we are to our own limits!

I only have to be strong *enough* to get through this physically. If I take care of myself physically, the emotional part will also be at least partially taken care of.

Having to have the doctor tell me that I needed to take better care of myself physically, and to limit what I do made me really look at how hard I’ve been pushing.

I’m naturally a pusher (yeah, go ahead, giggle all you want) – I hate leaving things undone, and even though intellectually I know that other people can do things that I don’t get done, I feel compelled to try. The doctor called me a Type A personality – and the funny thing is, I really thought I’d left that behind me. It’s obviously a process, and when the going gets tough, I revert to type – in this case, Type A.

I don’t ever want to feel as if my job isn’t important to me, because it is. I want to do the best I can, always. But it took the doctor to remind me that the best I can do while on chemo is not the best I can do under normal circumstances.

People keep telling me how good I look this time – trust me, whatever it looks like on the outside, it’s bad inside. Actually it’s worse this time, even with low-dose spread over 4 months vs dose-intensive spread over 8 weeks. For whatever reason, I skated through chemo on Adriamycin – oh, I had side effects and felt extremely fatigued, but I was already limiting my work hours from having taken time off for surgery, and there was no expectation that I was going to try to work full-time then. But the pain, the digestive/intestinal side-effects, the insomnia, and the build-up of the other Taxol/Avastin side-effects as I’ve been on them for 2-1/2 months is a lot worse than that.

In one way it was very freeing to have an authority (the doctor) tell me I had to slow down – I let go of the worry, for now. This time is different than last time, and I have been feeling upset that I wasn’t coping as well as last time. But that’s OK – I don’t have to cope the same, be as strong, or as humorous, or as positive; I just need to be enough of these.

03
Feb
09

February 3, 2009

Well, it’s only Tuesday, but already we’ve had more drama than necessary this week.

Last Thursday, I realized that I was coming down with a cold, so worked from home on Friday, and tried to take it pretty easy on the weekend. I already had plans for Saturday morning (a class on learning how to use my new sewing machine’s spiffy functions, which are indeed way cool), so I went to that.

Then on Sunday Carrie, James, Brian, and I went to brunch at Petite Provence on Division, which, not so coincidentally, just happens to be next to my most favorite bead store ever, Beads at Dusti Creek. So of course, we sent the boys home and spent a couple hours browsing and chatting – I really went to visit the ladies, because I haven’t been in for a long time, and miss seeing everyone. Sweet Calla was there, but sadly, nearly everyone else except for Eric, and most importantly Beau, were not. But we had a great visit with Calla, and Carrie found some great stuff for a new project.

I’m on a stash diet this year – I have enough beads, fabric for quilting, and yarn for knitting to last me for way more than a year (at least at my present level of output), so I’m only going to work from items in my stock. Of course, if I don’t have any findings, or need batting for a quilt, or don’t have the right set of needles for a knitting project, I will do what I have to do to make sure I don’t have a pile of UFOs on hand, but otherwise, NO purchasing new beads, fabric, yarn.

At any rate, I made it out of Dusti’s without actually buying anything, and oddly enough, without the usual “Oh, but just think what I could make with *this*, and it won’t be here the next time I come back, so. . .” temptation. It was fun to look at stuff, and I definitely saw things I would like to make projects with, but I didn’t even have to talk myself out of anything. Weird.

Of course, that might be because I wasn’t feeling up to par – my cold and left-over chemo side-effects from the last infusion on the 23rd had me pretty tired, and after I got home, I lay down for a two-hour nap. I had no problem sleeping Sunday night, either.

I woke up Monday morning to a pain in my calf, which lasted for a few minutes; and before that pain passed, my left lung all of a sudden felt like it was being compressed, and I felt like I was breathing through cotton. I could feel mild pain in my back underneath my shoulder blade. When I stood up I was a bit light-headed. Crap. These are similar symptoms to what I felt when I had my pulmonary embolism.

I called the oncologist, and, as I expected, he sent me to the ER. It was very busy, so probably the first hour was spent in the waiting room, although they did give me an EKG while I waited (sounds sort of like a service for the busy professional – EKGs and ultrasounds WHILE YOU WAIT!). Once I was in a room, they drew some blood and hooked me up to an IV. Annoyingly, they had to poke me in the arm rather than use my port, because the contrast agent they use for CT angiograms cannot be put through the kind of port I have. Apparently there is something called a “power port” that is specifically designed for taking that kind of abuse (hey – if a bloody plastic apparatus can’t take it, how are my precious organic VEINS supposed to handle it, huh?).

Another 4-1/2 hours and one CT scan later, the doctor told us that I had pneumonia. Brian and I looked at each other, pumped our fists, and yelled “woo hoo!” – pretty sad when having pneumonia is a good thing, but ya gotta admit that it is *much* better than a pulmonary embolism.

Even more exciting is that this means we don’t have to take me off the Avastin. It can cause bleeding problems (either clots or hemorrhaging in extreme cases), so if I’d had a PE, we would have had to stop it.

Finally got home (via Dairy Queen for my first meal of the day, and a consolation Heath Bar Blizzard) around 5 p.m., had a nap, read, went to bed. I’m on antibiotics for two weeks, and the doctor says I can go back to work by Friday. Of course, Friday is supposed to my next chemo, so I have a call in to the oncologist to find out if that’s still a go or not. I *really* do not want to delay the chemo. I want to get it over with!

I woke up around 2:30 a.m. this morning with an upset stomach and a killer headache. I got up at 3, had some broth and crackers, and sat in my recliner reading until 4. Since my stomach was better, but my head was still killing me, I decided to nap in the recliner for a while rather than go back to bed and risk waking Brian with my restlessness.

Around 7:30, Robin, who had been sleeping behind my recliner, started thrashing around, woke me up from a fairly sound sleep. I jumped out of the chair and went around to see what was the problem – he couldn’t stand up, his hind legs weren’t working. I calmed him down, ran my hands over his back and hind legs, but didn’t seem to have any pain reaction. Got him on his front legs, then lifted him onto his hind legs, and he was able to walk but not steadily – his rear legs kept collapsing. I got him over onto the carpet, and sat with him for a while, calming him down again, then tried standing him up again. It looked like it was mostly his right rear leg that was the problem.

I woke Brian up, who took him to the vet – they didn’t have an open appointment until 3 p.m. this afternoon, so Robin will be there all day. Since Brian has to go in to a client’s site this afternoon, hopefully our neighbor will be able to pick Robin up.

So that’s been my fun couple days so far. Woo hoo!




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