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.

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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




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