Posts Tagged ‘hair

06
Jun
10

Oh yeah . . .

Did I leave off baldness?

I can’t believe I forgot baldness.

And dried-out mucous membranes.

And fingernails that look like something off Frankenstein’s monster.

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.

05
Jan
09

January 4, 2009

As one might come to expect of taking a vacation after a stress-filled few months, I have been sick all week.

We got together with some friends for dinner and cards last Saturday evening, and I went to the bead store and for a late lunch with another friend on Sunday, then Monday morning it came crashing down.

My head has been like a trash compactor that is squeezing tighter and tighter, and even using decongestants has had little effect. I pretty much spent Monday either in bed or sitting in the recliner trying to read. I was nauseous, and I don’t know if that was related to the pain (although it wasn’t as bad as a migraine), or if there was something else going on. The rest of the week, I’ve had some sneezing, no fever, a little bit of a sore throat, and having to clear my throat regularly – but the worst part has been the congestion and headache. Even now, I’m still feeling congested and headachy, although it is definitely better than earlier in the week.

So that was how I spent my vacation week – enforced idleness. We did make a few excursions, one to breakfast with a girlfriend, one to see Bolt, and last night, we went to Marley and Me, and then on to dinner at Pho Van.

Other than that, I mostly read, played games, cleaned up my office (at least partly – I cleaned off the part where I actually work when I work from home, since I may be doing more of that during my chemo).

In preparation for chemo, I have stopped taking all my vitamins and supplements except for the Vitamin D and the calcium – a recent study showed that Vitamin C not only protected the good cells, but that it protected cancer cells, making them more resistant to chemotherapy drugs. It’s just easier to not take any of them, and hopefully that will help. I need the D and the calcium because of the bone-loss associated with being post-menopausal, and also associated with the aromatase inhibitor that I have been taking. That also is discontinued for the duration – although it’s not known to cause problems with the chemo, it’s normally started afterwards, so the oncologist wants to work it the same way in this case.

So I have my first chemo this coming Friday – they’ll start the Taxol slowly in case I have an allergic reaction. I need to take some steroids the night before and the morning of, to help keep any reaction to a minimum; and I believe they’ll also be giving me an antihistimine, which they did for the Adriamyacin as well.

I’ve been thinking about what to do with my hair (or coming lack thereof), and thought it would be kind of fun to have people sign my bald head like one would sign a cast. The only problem is that I need to come up with something to sign with that will last through washing, but isn’t permanent; and is non-toxic, as well. Brian suggested that I could wrap my head in Saran Wrap when I shower to keep the signatures dry – he pointed out that people who have casts on don’t get the casts wet. I gave him “the look” – eyebrows raised, looking at him over the top of my glasses – ’nuff said ;-}

We’ve had evening and overnight snow the last few days, and this evening, it started snowing again. At a guess, we’ve had more than an inch-and-a-quarter over three days, but although it did start to accumulate each time, it has melted quickly. This evening, Robin and I took a run/slog around the block (he ran, I slogged), and played in the front yard when we got home. He just loves the snow – he does nose-plants and flips snow around with his nose, so I started lofting clumps at him with my toes and he went nuts! And he loves to lie down in it – guess all that hair insulates him pretty well.

Back to work tomorrow, so I need to go get some rest.

06
Dec
08

December 6, 2008

This time last year, I was bald. This year, I am painfully short (well, my hair is).

I’ve decided to start keeping track of my hair adventures with this next round of chemo – I have a patchy record from the previous treatment, but am going to start a picture album of the changes I go through this time. I really regret that I didn’t get more pictures of the super-tight curl and the afro in its various stages and colors; although perhaps I can get a digital copy from the radiation oncologist of my ‘tweener stage with the bleached curls and the white roots. Except I have the “deer-in-the-headlights” stare in that one, so it’s not one of my better pictures. I definitely take after my mom that way – we always look like that in posed pictures. Candids are *much* better.

My radiation burns are clearing up nicely. Lots of peeling, with smooth, shiny skin underneath; but I suspect that I’m going to have a visual reminder from the treatment for quite a while until the tan fades. Happily, I haven’t developed a lot of scar tissue yet, although that is apparently an ongoing development for months if not years after. There is one big clump right in between the two scars, but now that my skin isn’t so sensitive to touch, I’ve gotten back into the massage technique the physical therapist showed me. I had to buy some tennis balls just for that – it puts a more even pressure on the tissue and rolls very easily, whereas using your fingers creates more specific points of pressure (which is fine in many types of massage, but not so much for breaking up scar tissue, I guess). The trick is to keep from doing it when the dog is around – he thinks tennis balls are *his* toys. Fortunately he’s not such a ball dog as a retriever would be. Robin will play fetch and dribble them between rungs of a chair, but by far his favorite game with a tennis ball is to pull the fuzz off of it.

I’m still feeling some fatigue, although it never got as bad as I thought it might. I have had some difficulty sleeping, but for the most part have been getting roughly 7 or 8 hours most nights.

Next up, I have my chemo port implanted on Tuesday this coming week. When I met with the surgeon, she said that she would try to put it on the right side again, in the same spot as before; but sometimes scarring from a previous port can make that impossible. If that’s the way it goes for me, she’ll have to put it in on the left side. That’s undesireable for several reasons – there’s all the skin damage from the radiation treatment to avoid; I normally sleep on my left side, and laying on the side with the port is very uncomfortable; but the biggest fear is that it will raise the risk of lymphedema in my left arm significantly. I am very anxious to avoid developing lymphedema. The people I know who have it tell me it is much more than inconvenient – it can be life-changing because of the way you have to limit things you do, and how you do them. I’ll keep my fingers crossed (unless someone tells me that lymphedema can be triggered that way. . .).

At this point, I haven’t heard back from the oncologist about the use of Avastin in my case – he was out of town the week before, and this week I think he was hoping to avoid talking to me by having the triage nurse ask if I couldn’t just talk to him when I came in for my first chemo. Well, no, I can’t. I’m very concerned about the significant increased risk of thromboembolic events (blood clots), because of my history. And I really want to know how he can justify that risk in the face of an unknown benefit for a treatment that is completely non-standard. On the other hand, I’m also paranoid about the possibility that this recurrence is much more aggressive than we know, and am willing to take a calculated risk in an effort to make sure that any cancer cells that might have gotten through the lymph system are dealt with. So I stated my concerns very clearly, and asked to have him call me back. When I hadn’t received a call as of Friday morning, I called again and told her that I really wanted to hear from him, as this is very important to me. She called back early Friday afternoon, and said that he was “gathering information”, and that he would call me early next week. OK.

Then Friday, we’re flying down to see our parents for our usual fly-by Christmas visit. Robin is staying with our neighbors Sharon and Gary, who have the two miniature poodles Jasmine and Lola. The three of them got along great at Thanksgiving (i.e., Robin, Jasmine, and Lola), although the two girls did sort of play together and sort of ignore Robin. I’m hoping that enforced together-time will be more fun for him – he and Jasmine loved to play together before Lola came along, so I think he really misses that.

Tomorrow we’re going to see little Emily Rose (and daddy Greg, too!) in The Nutcracker Suite. ER is going to be a Snowflake, and part of the Arabian dancers; Greg is going to be one of the Party Guests. I don’t think he has to dance, but he may be wearing leotards – no, probably not. I bet you couldn’t pay him to do that!

03
Jun
08

June 2, 2008

Woo-hoo! I weighed in today – the first time since May 16 (nearly 2-1/2 weeks ago), and I’m down 2.8 pounds! I’ve reached 20 pounds down, plus some – and last week was a *bad*, *bad* week in terms of what I ate.

This week is starting out OK, but will be challenging on Weds thru Friday, because I’ll be working our user symposium, which means that I’m not going to have a lot of healthy food choices. I’ll just have to be vigilant and very focused on avoiding the really bad (i.e., good) stuff. I won’t be able to get back to my regular Friday weigh-in this week, due to the symposium, so I’ll weigh in again next Monday.

I’ve also been fighting a cold the last two weeks, and am finally getting over it – not completely, but nearly there. It hit me really hard – I have pooh-poohed everyone who has been telling me that I shouldn’t overdo it, because I’m still recovering; but obviously there’s been a lot of denial on my part. Usually, if I do catch whatever is going around, it’s fairly mild – in general, I’m pretty darn healthy. So for something to exhaust me the way this has means that my body is still very depressed (physically, not mentally). I’ve been telling people that I’m no longer immune-compromised because my white blood count is back to normal, but the reality is that the immune system is just that – a system composed of several parts. Apparently other parts of my system are not in as good shape as the white blood cells. This is at least the third time I’ve been sick with something since mid-January (2 weeks after my last chemo), two of which have been since I went back to work at the beginning of April.

In other news, I’m a redhead once again. I decided to dye my hair again, and this time went with a red that matched my chemo wig. The first day or two it looked pretty purple in certain lights, but has settled down to being a lovely auburn. The only problem is, with it being so curly it kind of looks like a ‘fro, or a darker version of a short-haired Bozo wig. But in its natural color, basically salt-and-pepper (heavy on the salt), it was starting to look like the stereotypical little-old-lady perm. It’s going to be interesting getting through the growing-out stage where it’s not heavy enough to hang down at all. I have a vision of it being like an aura surrounding my head, perfectly spherical except where it breaks around my neck and face. That should be an interesting look, especially if I decide I don’t want to keep dying it, and have salt-and-pepper roots with red tips. Shudder!

Frankly, I liked the bald look better than the Dickens urchin look.

08
Dec
07

December 8, 2007

Cravings.

What’s up with that?  I thought only pregnant women got cravings.  Well, OK, pregnant women and emotional eaters like myself.  But for the most part, my cravings aren’t based on emotional reactions, although a few times I’ve been craving comfort food (breakfast, tuna casserole, lasagna, Orange Milano cookies).  And I’m quite sure I’m not pregnant!

For the first two chemos, I have craved starchy foods, especially potatoes of any kind, but also bread.  Unfortunately, it hasn’t been the complex carbs I’ve been wanting – I even turned my nose up at whole grain bread (which is all we normally use).  I had to go out and buy some of those pre-made biscuit dough rolls that open with that satisfying *pop*.  How desperate is that?  And although they smell heavenly as they’re baking, they don’t taste quite right in my mouth – presumably part of the chemo.  But I still wolf them down, sometimes slathered with butter and/or jam, sometimes with melted cheese, but never just the biscuit.

Hash browns also are calling me – honestly, rather than ones that you fry up in the frying pan, the ones that really call to me are the deep-fried McDonalds kind.  Brian asked if maybe it was the deep-fried part that I was craving, but I think it is really both things together, because I haven’t yet wanted a deep-fried Milky Way, and I love Milky Way bars.

But for this last chemo, I find I’ve been craving fruit.  I love fruit, but I never think of having it as a snack – even when I’ve made a special effort to buy fruit to include in lunches and snacks.

Monday night, I made Brian drive me to the store so I could buy all sorts of things like toaster waffles, fruit, bread, etc.  What I really wanted was some fruit crepes, but I couldn’t find any pre-packaged kind, and I don’t know how to make crepes myself.  I bought a box of Satsumas, and have been eating my way steadily through them.  Low-sugar fruit spread on biscuits is up there high on the list, and the last few days I’ve been craving orange juice.  Typically, I don’t drink orange juice because it’s too sweet for me (I know, many of you are going “Yeah, right!  It’s not any sweeter than chocolate!”, but it’s true!); but the other night I just had to have it – it seemed like the tartness was what my body really wanted.  That was Wednesday.

Thursday, I felt as if I was having all sorts of symptoms of anemia – fatigue, shortness of breath, rapid heart rate, weakness, shakiness, low appetite, but I was also having increased chest pain in the usual place I have it relating to my lung clot.  I hesitated to call the doctor, because I just knew they were going to send me to the Emergency room; but after driving into work and barely being able to pick up my purse out of the car because I felt so weak and exhausted, I called.  Sure enough, they said that my hematocrit was at 39% on the last ChemoFriday, so I’d better hie me on over to St. V’s to have another chest CT scan to look for new clots.  I said “but I think it’s just anemia”, but they insisted.  So on I hied, and spent around 4 hours being told that they couldn’t find any clots, but look, my hematocrit is only 33%.  Plus my white blood cell count was extremely low (1.1), which means that I am immune-compromised.  They made me wear a mask when they wheeled me through the hospital back and forth for the scan.  And yet another radioactive agent got injected.  Ah well.

Talked to the doctor’s triage nurse on Friday, and she said, yeah, it’s just anemia, but we can’t give you anything until you drop below 33%.  Not only that, I shouldn’t take more iron supplements than I already do, because it’s not my iron reserves that are low and causing the anemia, it is the chemo attacking the bone marrow and interrupting the creation of red blood cells.  So all I can do is wait it out, but this is fairly normal with chemo, and typically the marrow starts producing again in a week to ten days – so I should start feeling better around Monday or Tuesday (nearly in time for my next chemo on Friday ;-} ).  As well, she said that I shouldn’t go out in public until at least Monday, because of the low WBC count.  Sigh.

And last night, I started craving red meat.  I rarely eat meat anyway, but I just needed to have a big piece of prime rib.  Unfortunately, I couldn’t go out to a restaurant to have it.  In despair, I considered trying to eat while wearing a mask, but then I remembered that we had a gift card for Applebee’s.  They don’t have prime rib, but they do have a to-go service, so Brian went out to pick up dinner.  Mmm, that rib-eye was delicious, and so was the creamed spinach!  But for this particular craving, I don’t know if it was truly related to the anemia, since my iron levels aren’t the problem, or if it was just suggestability on my part.  Vitamin C helps you absorb iron, so it could be that any anemia triggers a reaction that causes cravings for iron-related food products, such as the orange juice and the red meat; even if the anemia is caused by something else, perhaps your body just reacts in a certain way because the most common cause of anemia is low iron levels, so it has a good chance of solving the problem if it creates that craving.

Anyway, I’m still feeling anemic, and think I’m going to go take a nap soon.  This morning, we tried to duct-tape out the stubble on my head, and while it pulled out plenty of hair, there was so much left that we decided we didn’t want to use that much duct tape.  So I’m still sticking to pillows unless I wear a hat to bed, and hoping that sooner or later, something will prompt the remaining hairs to fall out.  Scrubbing with a rough cloth doesn’t help – short of waxing it, I guess I’m stuck (literally!).  I did buy a very cool wig on Wednesday, thanks to Shi-Yi for helping me pick it out!  I’ll post a picture soon.  Several of the hospital staff complemented me on it, and at least a couple professed to being surprised that it’s a wig.

Plenty of other stuff going on, but the best news is that Brian’s mom, who was in the hospital last weekend for internal bleeding, is home and feeling great after getting 3 units of blood added.  Apparently she was bleeding in her stomach, but it had been going on for a while for her to be so low.  I guess anemia is running in the family these days!  The doctors think it is a one-off thing, but will be keeping an eye on her RBC in the future.

Guess that’s all for now,

Julie

25
Nov
07

November 25, 2007

Well, I did it.

More accurately, *we* did it.

There’s a picture below from part way through the process, and the full series of pictures can be found here: http://picasaweb.google.com/BrianAndJulieMartin/JuliesHairCut

half-way there

Friday night, Brian, Cathy, and I plunked me in the tub and pulled out Brian’s beard-trimmer (which, purchased by me for Brian in a major feat of precognition last March (or I may simply have been getting the most out of a bargain) included a full set of accessories for trimming pretty much any kind of hair men typically have. We did not use the nostril-hair trimmer.)

As you’ll see from the photo album, we had a lot of fun while we were doing it – in spite of the shell-shock look I am wearing in some of the photos, I’m really pretty pleased at how I look bald – well, mostly bald. Because I can’t use a bladed razor currently, due to being on the blood anticoagulant, and because my electric razor doesn’t give as good a shave as a bladed razor, there’s actually quite a bit of stubble there. We did try Nair, and believe me, that is not a good thing to use on your barenaked scalp – particularly on a newly shaved, previously pampered girly-scalp.

The funny thing about stubble is that (as my friend Sue warned) it acts like Velcro. This is not always a good thing. While it helps keep slippery scarves and knitted caps on your head, it can also do things like prevent you from moving your head on the pillow. The deafening roar of stubble rubbing on a pillowcase is also a sleep-preventive. And it itches.

Fortunately, I expect the majority of the stubble to leave of its own accord in a week or two. Well, OK, actually with a little help from its friends, the chemo drugs. But in the meantime, I’ll just learn to live with it.

Sadly, we haven’t yet done the henna tattoo. Cathy came up with a great dragon design, and after we finished the cut, we started getting set up to do the tattoo. Fortunately, before we’d smeared my scalp with any goopy, slimy stuff to transfer the design, we read the instructions on preparing the henna, and realized we should have started the whole process in the morning. Not only do you have to let the henna sit for two hours after mixing it up, you have to leave the paste on the skin for six hours after applying it. So we’re going to do it later – it’ll depend on how this week goes for both Cathy and me; we might have to wait for the weekend after next, since I’ll have just had chemo on Friday this week.

Remember I’d been complaining about not having the promised steroid high? Well. I also seem to have avoided a lot of the worst side-effects of chemo, at least for this first one – mostly I had reflux, and felt fatigue and brain-fogginess, with occasional bouts of mild nausea (easily dealt with by eating a little, or resorting to anti-nausea drugs), a few other gastrological symptoms, and a bit of moodiness. Cathy, who is a cancer survivor herself, told me that she’d stolen my steroid high last Saturday, but then paid for it by having a fever and other miserable symptoms for a couple days. Now that is a true friend!

I hope that you all had a lovely Thanksgiving. We enjoyed ours, spending Thanksgiving day with our friends Sharon and Gary, also including Bill, Kevin, Jasmine, Keeko, and Robin (and lots of incredibly good food!). We had a second Thanksgiving at our house on Friday, with Cathy, Wally, and Augie the Dorky, again with an incredible array of fantastic food that Wally and Cathy prepared. We also got to talk to family, and the only thing that would have made it a better weekend is to have been able to spend the holiday with our family as well as our friends.

I am thankful for many things, number one being Brian. The last few months have made me realize how thankful I am for my many friends (many of whom are also family) – friends who listen when I need to talk; who wait in the hospital while I am waiting for surgery; who make contact without waiting to hear from me first; who drive me to the doctor when I can’t drive myself; who share their homes and love with us; who share the benefit of their experience; who take me looking for cranial prostheses; who keep me laughing; who are willing to shave my head for me; and those who silently and publicly send their good will and thoughts and prayers. This is not an all-inclusive list – there are so many ways in which I have been shown friendship, but everyone I know fits in the above list in at least one way.

Thank you all.

Julie

17
Nov
07

November 16, 2007

What I want to know is, where the #*%# is my steroid high?

Everyone who’s had chemo has told me that they had a steroid high after chemo – some even said it was the same day and lasted into the next. I am still waiting . . . I had to take a long nap after we got home, and I was definitely ready for bed an hour ago, but I had to delay it in order to eat something to deal with the most major side effect I’ve had so far: my GERD is acting up.

My GERD (Gastro Esophogeal Reflux Disease) has been well under control with Nexium, and the Nexium is still doing part of its job – controlling acid. What it isn’t controlling currently is the reflux part of it. For anyone not familiar with this (weak-stomached readers may want to skip to the next paragraph here), having reflux is like vomiting in slow motion. I’ve used some Tums and some Rolaids, and tried one of the anti-nausea drugs they gave me, and each one helps a little bit. I’ve got one more anti-nausea drug that is supposed to be good to take at night since it makes you drowsy, so I’m going to take it tonight, very soon. Hopefully it will take care of the problem. Grazing also seems to help a little.

There is a metallic taste in my mouth, and a feeling that it coats the mouth and throat, but so far it hasn’t affected the way food tastes too badly. When I had lunch, I noticed some difference from the beginning of lunch to the end of lunch; but the food still tasted good. Many women say that food just tastes bad, or doesn’t taste at all – this may be coming, as tomorrow is supposed to be worse than today, and Sunday may be my nadir – it could stretch out to Monday – it’s anyone’s guess how I’ll react to the drugs.

My sense of smell is also heightened – again, not to the point where things smell badly when they wouldn’t normally, but perhaps it’s just that they’re more intense. It seems to me that intensity might become bad – too much of even a good thing might be overwhelming.

So that was my first day after having chemo – if I think about my hair, I notice some tingling in my scalp, but that might just be psychosomatic. I still haven’t decided when I’m going to shave my head. It might be as early as tomorrow, although I am going to need to get a warm cap of some kind, as the weather is getting cooler.

Cheers!

Julie

14
Nov
07

November 14, 2007

Welcome to the most recent installment of the popular soap opera, “All My Chillblains” (lived before a live audience).

In this episode, our heroine Julie finds herself playing out her recurring nightmare, in which she returns to the scene of her surgery, over and over, day after day. The curtain opens on Julie, standing in the lobby of St. Vincent Hospital East Pavilion, trying to remember where she has to go next.

**********************

I had to be at the hospital at 7:00 a.m. on Monday morning for a bone scan. After injecting me with yet one more radioactive contrasting agent (this one was called “Technetium”, really!), the tech told me to come back in 3 hours for the bone scan. The 10:00 a.m. bone scan was not too bad – it just involved laying on the table while it moved under the camera. The 2:00 p.m. blood draw was easy, once they found an unpoked place on one of my arms.

Monday early evening I received a call from my surgeon’s office rescheduling my next-day’s surgery from 10:15 a.m. to 7:15 a.m. My poor friend Cathy also had to suffer with the early morning since she was my ride to and from St. V’s. The actual surgery started around 9:30 (you have to arrive 2 hours early, of course…), lasted for one-and-a-half hours (they had a minor problem with a kink in the catheter tube that needed straightening), and we left for home at 2:30 p.m. after picking up some really nice pain pills from the hospital pharmacy. The worst part of the surgery was the pain in my back/shoulder/neck from the towel they rolled up and placed on the table between my spine and my right shoulder blade to position my chest and arm properly for the insertion. That alone required two pain pills, plus alternating heat and ice to make it bearable.

Wednesday I attended a “chemo class” in the morning – in addition to reviewing the actual process I’ll have to go through, we looked at the biology of blood, cancer cells, and anti-nausea drugs; covered the side effects of the drugs I’ll be taking; the importance of hydration and exercise to chemo patients; nutrition during chemo; how to deal with hair loss, both physically and emotionally; and the reasons I should immediately call the triage nurse (fever of 100.5 degrees or above is the most critical one). At one point, the nurse was describing how the goal of a particular chemo drug was to “kill, kill, kill,” and I nearly jumped to my feet and started jumping up and down yelling “Kill, kill, kill!”, but managed to keep my seat. It was a close thing.

Then, after I’d gotten home, my oncologist called – he had a lung specialist look at the refined thoracic CT scan; and then a whole group of lung specialists examined it this morning. Everyone agreed that not only did I have a pulmonary embolus (blood clot) in my left lung, it looks like there is one in my right lung, also. So I had to drive back to the hospital, get both an injectable blood thinner and a pill-form blood thinner from the pharmacy, and learn how to inject myself. The nurse drew about 7 or 8 vials of blood to do tests on my clotting factors to determine if I have a predisposition for clotting (in which case I’ll have to be on blood thinners for a very long time), or if it appears to be an isolated incident. Since the doppler ultrasound ruled out clots in my legs, nobody can figure out *how* I got clots in my lungs.

Tomorrow (Thursday), I have a fill/check-up with the plastic surgeon, and a support group meeting. This is the easiest thing I’ve got all week.

Friday is my first chemo – I have to put together a chemo kit, including a book, my iPod, my knitting, a pillow, some snacks, and maybe a blankie. For my second chemo, I’ll have to bring a warm hat. The chemo suite contains roughly 15 to 18 nice recliners, and they serve coffee and other drinks; and there’s a view, although it was too dark this evening when I was in there learning how to inject the blood thinner to see if it is at all worth gazing at for three or four hours at a time . . .

And I thought that was the worst of it – having to be at the hospital five days in a row (multiple times, some days). But I learned on Monday that I have to be back there on Saturday for my follow-on infusion of Neulasta, a drug that promotes white blood cell generation. That is a two-and-a-half hour appointment. Six days! I have to be at the hospital six days in a row!

At least I get a break on Sunday, before I have to go back in next Monday for more bloodwork to check the level of the blood thinner.

And I discovered today that I’m actually going to have 8 chemo sessions – both Brian and I thought that the reference to 8 included the Neulasta infusions; but it will be 4 sessions of Adriamycin, and then 4 sessions of Taxol. It really hasn’t been a great day, but oddly, all I can do is laugh. Brian suggested there might be a note of hysteria detectable, but all I can see at this point is the absurdity of it all.

Besides, the Games Party was great fun, even if I was totally wiped out the next couple of days; and today I had lunch with my friend Harriet – it was so good to see her! And the oncologist’s nurse practiitioner gave me a prescription for a wig. Life is good!

My plan is still to henna my head – Cathy is going to design a Chinese dragon for me, and do the henna painting, too. I’d been planning on shaving my head this weekend, and may still – but if I do, I’ll have a nice crop of stubble for roughly a fortnight. Choices, choices!

Julie

30
Oct
07

October 30, 2007

First order of business: corrections. Do you think newspaper and magazine editors feel embarrassed when they have to issue corrections?

Obviously, in addition to inheriting my mother’s breast cancer tendencies, and her trick of calling people by the wrong name (often when she was meaning to say my name she’d say “Jackie” and then “Patty”, her sisters’ names, before she finally got to “Julie”.), I’ve also inherited her inability to differentiate between right and left. Thus, in the October 28th post, substitute “right” for “left” in all cases. As someone asked, why would more pain in my left arm make it hard to drive a manual transmission car, unless it were a British model? Admittedly, my Mini Cooper *is* a British model, however, the manufacturers have moved everything into position for American driving (except the bonnet release). At least I was consistent in misidentifying which side I meant . . .

So, corrections aside, I unexpectedly got more news today.

Apparently the company who performs the OncoType DX test (to determine the effectiveness of chemotherapy for my particular type of cancer) somehow received approval to proceed with the test, even though I’d planned on getting the predetermination from the insurance company prior to having it done. After venting to the poor nurse practitioner about the lack of response from her staff, and expressing my displeasure at the test having been run without my approval, we got down to the results of the test.

I do need chemotherapy. It will be four sessions, three weeks apart. Regarding when it starts, I’m still planning on going to the second-opinion appointment today, although I don’t really expect the end results to be any different. I’m pretty sure I’m going to change doctors, because even though it wasn’t the doctor I was unhappy with, the doctor isn’t the one who will actually be administering the chemo, it will be the staff. So it might start as early as this week, or it might start in the next couple of weeks.

I’d sort of gotten used to the idea that I might not need chemo, so I’m having to switch my mindset back to where I started, which was when I assumed I’d be having it. It does solve a little problem I’ve been wrestling with – do I cut and color my hair again, or let it grow out? Now at least I won’t have a skunk stripe to worry about.

Perversely, I’m in a better mood today after finding out I have to go through chemo than I have been the last few days. Either I really needed to vent to someone at the doctor’s office, or just having the uncertainty removed has allowed me to get back to my usual self.

When I thought I might not have to have chemo, I went through a (sometimes bizarre) mix of feelings. First off, there was relief that I was so lucky as to have caught this early, and happiness that I wouldn’t have to go through a really miserable experience. Then there was worry about “what if”: what if there is a spot of cancer that wasn’t in the main part of the breast tissue and was missed by the MRI? What if there was a single cell of cancer that passed through the lymph system? What if I have the genetic markers that predict both breast cancer and ovarian cancer? What if, what if? There was guilt that I was so lucky to have been Stage I and wouldn’t even have chemo when other women in my support group are at Stage III and Stage IV; and guilt about feeling happy for myself (Sue can relate to this!). The two weirdest feelings were: 1. I felt as if having cancer and not having to get chemo meant that I wasn’t really sick – which made me feel as if I were malingering by taking time off work; as if I had gone through an unnecessary surgery; and as if I hadn’t really had cancer. And: 2. I felt a sense of denied entitlement – if I’m going to have cancer, I want to have the full experience – if everyone else is getting chemo, I should get it too!

So maybe my good mood is because I have been pronounced entitled, and am joining the ranks of the “truly sick” ;-}

Isn’t the human brain an amazing thing?

Julie

03
Oct
07

October 3, 2007

Well, I thought I’d spend a lot more time reading than I have – even working full time and working on various arts and hobbies, I typically read 13 or more books per month – what joy, then, to have so much time (and so much enforced sitting around!) on my hands. Surely I can read at least twice that much, especially since I am not yet able to do any knitting, quilting, or beading. . .

It’s amazing how little focus I have. For the first two days, I could pick up a book, but reading and assimilating more than a couple paragraphs was just beyond me – looking at the pretty pictures in my beading and knitting magazines was about the level of concentration I had. Now I’m able to read a few pages at a time, but a whole chapter seems beyond me. Luckily, I have options – every single Godzilla movie is on cable’s “On Demand” playlist. Not being able to have a real shower makes me feel like stomping things, too.

Brian did wash my hair yesterday – that helped immensely. Thank goodness I got my hair cut!

Sharon brought lunch and Jasmine over today, and I’m not sure which was better – the cherry crepes, or watching Jasmine and Robin playing. She’s only 7-1/2 pounds, and Robin is 40, but they wrestle and do kung-fu moves, and tear around the house chasing each other – it is hilarious. Jasmine is a master at playing keep away – we gave her a toy that Robin hadn’t played with for months or more, and she teased him with it until he absolutely *had* to have it – but she would just turn her head slightly and he couldn’t get it from her.

I’ve got at least three appointments tomorrow, so it’s going to be a long day. I hope that the drains and bandages will be removed – or at least that the bandages are reduced to a thinner layer. I can’t even touch my sides, and it’s starting to get itchy under there. I’ve never had a cast, but I imagine it’s rather like that.

Later,

Julie

20
Sep
07

September 20, 2007

I realized tonight that I had forgotten to confirm previously that my surgery date is officially set for September 28 – it’s at 2:00 p.m. at Providence St. Vincent’s Medical Center. I have to be there by 10:30 in the morning – not too bad, unlike some poor souls who have early surgeries and have to be there by 5 a.m. I’d never make it!

We met with the plastic surgeon today, and after discussing the various options, I made my choice. He confirmed that my concerns about taking abdominal muscle (along with tissue and skin) to do the reconstruction was likely to weaken the remaining muscle enough that it would probably exacerbate my occasional back problems, and he also said that some women tend to have problems even getting out of chairs afterwards. As well, once you go that route, you are stuck with it, good or bad. So implants it is!

I caught myself being rather vain about a couple of things as we talked to him. I know, I know, how can someone who doesn’t wear make-up, who doesn’t dye her hair, who wears jeans and t-shirts to everything but weddings and funerals, and who blow-dries her hair by putting the top down on her convertible, be vain? Well, I insisted that I wanted to be the same size as I am now – I mean, logically, I’d probably be better off having at least some reduction to prevent upper back problems as I age, but no, that just isn’t even a possibility. Why? Maybe just so that I can avoid the inevitable pear shape a little while longer; or because I’m used to the weight and dimensions; or because I’d miss being embarrassed when I spill food there instead of on my lap while eating (I think Brian, who has to deal with the stains in the laundry, may have taken the doctor aside and asked how much it would be to just forget about the reconstruction – jeans don’t show stains as well . . .).

The second instance is just as silly – I quizzed him mercilessly about scars. Where, how many, will they fade, will they stretch, etc., etc., etc. I mean, come on! Even if he does the most fabulous job of reconstruction, I’m not planning on posing for Playboy – Brian and various doctors are pretty much the only ones who are going to see the finished product, so why should I care?

I’m not even really worried about losing my hair – I think it might be kind of fun to have my skull painted or henna tatoos put on it for the duration. So what’s the big deal about scars? Vanity, pure and simple. I guess everyone has their little vain streak – frankly, I’d have been happy never to have discovered this one ;-}

I’m debating participating in the “Race for the Cure” this weekend, but even for the walk (rather than the run) I would have to be downtown around 8 a.m. on Sunday. So I think I’ll do the “Sleep In for the Cure” – that is definitely within my usual weekend morning routine. Thanks to those who are listing me on their “In Celebration” lists!

Julie

14
Sep
07

September 13, 2007

There’s always more to learn, but I think we pretty much know what’s necessary after our meeting with the surgeon this afternoon.

What we discussed with her today basically solidified my decision – I had hoped that she would have something that would make the choice of unilateral or bilateral mastectomy more clear, and she definitely did.

The mass on the right is something called “papillomatosis”. For those of you who aren’t familiar with the term papilloma, that is the Latin word for “wart”. Remember the huge wart on the bottom of my foot that I had surgically removed last year, and it grew back two months later? Well, about the same time that I received the cancer diagnosis in July, I noticed that it was getting smaller, and now it’s completely gone. Guess we know what happened to it . . .

Seriously, it is either a type of wart, or what they call “ductal hyperplasia”, which means that there is an unusual proliferation of cells within a duct in the breast. There are different types, some of which may be cancerous or pre-cancerous, but most are benign. However, the surgeon told me that while it isn’t known if papillomatosis can become cancer, it is not unusual to find the two in conjunction. This can mean that there’s something weird going on with the cells in an area, and some of it develops into the papillomas or some type of ductal hyperplasia, and some of it develops into cancer; or it could mean that there is some more sinister connection between the two. Upon doing some research on-line, the general consensus seems to be summed up best in the following quote:

“The outcome is expected to be excellent for patients with solitary tumors. Patients with multiple papillomas or who develop them at an early age may have an increased risk of developing cancer, particularly if they have a family history of cancer or there are abnormal cells in the biopsy.”

http://www.nlm.nih.gov/medlineplus/ency/article/001238.htm

(BTW, if you decide to google “papillomatosis”, be very, *very* careful with what links you select. For some reason, it appears that nasty hackers think anyone who is looking into that term is fair game to hijack their system or plant spyware or a virus – I nearly got nailed on a link that looked like it was going to a legitimate website, but turned out to be an attempt to get me to download a worm. Google ductal hyperplasia or papilloma, instead.)

So my decision is to follow my gut feel, which was tending towards the bilateral mastectomy. While it is currently a solitary tumor, between the cancer on the left and my (comparative) youth and family history, I’m a cancer just waiting to happen if I leave it (which definitely is worse than being a wart waiting to happen – been there, done that, bought the crutches ;-} ).

Next on the hit parade is my initial meeting with the plastic surgeon – it is currently scheduled for the 20th, although the scheduler was going to put my name down on a cancellation list. His scheduler will talk to my surgeon’s scheduler, and we’ll get the actual date of the surgery set – we’re currently targeting 9/28, although I suppose there is a very small chance that it could be as early as the 21st if the plastic surgeon sees me before the 20th.

In the mean time, I am taking a beading class to create a “Day of the Dead” (cue Twilight Zone music!) necklace. I plan to memorialize Mom – unfortunately, I don’t have a lock of her hair, although there is one floating around out there somewhere, but I’ve got a few things that I think I’ll be able to incorporate. I’ll post a photo of it when I finish.

Cheers!

Julie

28
Aug
07

August 27, 2007

To all my friends and family:

Thank you all for the love and support as well as the positive thoughts and energy you are sending me. Because I can’t update each and every one of you as often as I would like, I’ve started this blog to share news (and eventually pictures) as I journey through the world of being a cancer survivor. Although it may seem premature to speak of being a survivor before I’ve even had surgery or any form of treatment, I believe that breast cancer is merely a bump in the road of my life. Being surrounded by survivors, including my mother and her sister, my stepmother and a cousin, as well as friends and many other women who have traveled this road, I find inspiration to make the most of the challenging days ahead.

The background:

I discovered a lump on my left breast on July 15 of this year, and after seeing my doctor and having mammograms, ultrasounds, and biopsies, was told on July 30 that of the two masses easily identified, one was cancerous and one was benign. However, when Brian and I met with my surgeon for the first time, she advised us that there were two suspicious areas shown on the mammograms – another one on my left breast, and one on my right. On August 14 I had an MRI which confirmed that there were indeed additional masses. More biopsies required!

Current status:

As of today, I have a bilateral ultrasound-guided core needle biopsy scheduled for August 29. If I’m lucky, the MRI images will allow the doctor to follow a “road map” to the lumps and get tissue for the pathologists to analyze. If I’m not lucky, they will not be able to locate the masses using the ultrasound, and I will then have to schedule two separate MRI-guided core needle biopsies (the dyes injected to highlight the masses are fairly toxic, and so limits the doctor to doing one breast at a time).

The known-to-be-cancerous lump was originally believed to be smaller than one centimeter, making it a good candidate for a lumpectomy – the second, benign, lump is very close, and would be removed at the same time. However, the MRI showed that the cancerous mass is actually much larger (roughly 3.5 centimeters), so even if it is the only cancer, I will have to have chemotherapy to shrink it in order to have a lumpectomy. If either of the two masses about to be biopsied are cancerous, we will have to consider much more extensive surgery.

The good news is that the lymph nodes appear normal on the MRI – while this isn’t a guarantee, it’s a good indication that the cancer has not spread.

I started physical therapy last week in an effort to build up some fitness prior to surgery and chemotherapy, so that I don’t end up even worse off than I am now. Robin is very happy that taking him for long walks is part of my exercise plan!

So far, my reaction to the whole thing is to find the humor in the situation and laugh about it – Brian has been extremely helpful in keeping me on the laugh track. I don’t think I would be coping so well without him. Please feel free to share some laughs with us.

I don’t expect to post updates every day, but as I find out more and set dates for surgery and treatment, I will let you know. I will also post updates on how I’m doing, or if someone shares a good joke ;-}

Love, Julie




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