Showing posts with label metastatic breast cancer. Show all posts
Showing posts with label metastatic breast cancer. Show all posts

Wednesday, June 1, 2011

Back to that "new normal"

I actually felt so well on Tuesday that I was able to drive the car; attend a morning meeting and be focused and present for the discussion; run an errand to the dry cleaner and go grocery shopping. That represents a HUGE improvement over the past ten days, when I could barely move my sorry ass off the couch, and needed rides to everything. The shingles are showing a good response to the treatment, but their presence will prevent me from modeling at the Gilda's Club fashion show on Friday. It's too bad, but always better to protect the health of the other models who have compromised immune systems. The third time was not the charm, I'm afraid.

Still no word on whether the chemo combo is doing anything for the cancer. I anticipate getting my tumor markers checked again, maybe as soon as next Monday.

I was truly tired after all the running around yesterday, and noticed that my feet hurt. Not just hurt like I was tired of standing, but numb and tingly all around my toes on each foot. I think this is more neuropathy from the chemo combo. I reported it to Dr G's nurse and was told I could increase the gabapentin up to 900 mg three times a day, which is quite a bit more than I am taking now. It should help with the neuropathy pain.

I also ran some errands today. Went to Dr G's office for a shot of Neulasta to build my white blood cells, then drove north to exchange a pair of shoes (size 8.5 bought at Northgate Mall) to the size 8 (only at Alderwood Mall). I was fine with all that highway driving too.

My nose is a little runny, with a tendency to bleed (that's the Avastin), I am constipated (from the gabapentin), and I've run a very low grade fever of 99.2 degrees for the past the nights. I may be coming down with a something, and so plan to take it easy tomorrow and just go to my support group. They need to hear Jill's great shingles story.

Monday, May 30, 2011

Pain relief

I finally got adequate pain relief today. While waiting to get Avastin and Abraxane, the current chemo combo, I spoke on the telephone with Dr G. He decided to treat me with Lidoderm (lidocaine trasndermal5% topical patches. These are patches that distribute medication directly through your skin. The fentanyl patches are similar.

The wonderful pharmacist at the Cancer Institute, Lanny (I don't know how to spell his name), walked over to deliver the box of 30 patches to me. Our insurance coverage through Premera charged only $20 for this medication. I put one on in the middle of treatment at Dr G's request to see how well it might work while I was still in the chemo chair. Evidently the Lidoderm works extremely well, because Rik and I had a busy afternoon.

We went to the new Skillet Diner for lunch. It was not as good as I had hoped. My hamburger, ordered medium with a specific request for pink on the inside, not red, arrived overcooked and dry. There are few chances to eat poutine in Seattle, and I always jump at the chance (and am usually disappointed). Poutine is three things: fried potatoes, gravy and fresh squeaky cheese curds. The fries were terrific! The gravy, made with chicken stock, had plenty of herbs. But given that the local Beecher's makes really good cheese curds, I was disappointed to find melted cheddar cheese on Skillet's poutine. Maybe they think Seattleites don't know or care about authentic poutine?

Here's a shot of my poutine.
At least it came as a side to the burger and so wasn't an enormous helping.
After lunch, we picked up some bagels at Eltana. A tragedy was averted just in time -- we had run out of bagels this morning!

Nordstrom was having their half-yearly sale for women, and I really wanted to stop by while I had Rik to drive me. I did find a cute pair of black flats at a really good price. They might be a half-size too big, though, and I'd have to go to Alderwood Mall to find the smaller size. I will wait and see. Of course, while we were at the mall, I shlepped Rik into Macy's where there was also a sale, and I picked up a summer belt patterned in small squares of colors and a new purse, again in multiple colors patchworked together. It was a lot of shopping, but Rik was gracious about taking me, and I found such lovely things at good prices. Rik is the one who found the purse, and it is truly a keeper!

We came home and I watered the garden (we had two days of sunshine in a row!) while Rik mowed the lawn. Then I made us dinner of spinach and mushroom enchiladas suizas, rice and sliced fresh mango.

It's now after 9 PM and I am done for the night. I just took off the 12 mcg Fentanyl patch (it had been on for 72 hours) and removed today's Lidoderm patches. It hurt to remove them!, but we will see if I maintain good pain control overnight with the bedtime doses of valacyclovir and gabapentin. I will report to Dr G that I removed the small dose Fentanyl patch.

It felt totally terrific to be this busy for the first time in a week. I haven't cooked a meal in more than five days, ran an errand or driven the car in more than a week, or even been off the sofa this much in ten days. I know I may have overdone things (that's the trouble with pain patches, you feel good so you don't realize you do still have pain and it's easy to do too much). I may pay the price tomorrow, but there is only one item on my agenda, and I can do it from home if need be.

Time for a good night's sleep!

Thursday, May 26, 2011

New oddities

Bobka the dog perched on my right leg for about 20 minutes last night while I was relaxing before heading off to choir rehearsal. When he got up, the skin felt numb and it's stayed so throughout the day today. In addition, I noticed some small, red dots in a circular pattern in two locations on my right thigh. I called Dr G's office this morning and he is going to squeeze me in for a physical exam before today's scheduled MRI.

Again, we can't do anything to address brain mets until we get the pain under control.

This really sucks.

Tuesday, May 24, 2011

Pain update

Yesterday Dr G put me on 50 mcg fentanyl patch and 10 mg Torodol every 6 hours. This did not control my pain well enough and I call his office several times throughout the day, asking for suggestions on better pain management. Finally at about 6:30 PM he called me and changed the dosages to 100 mcg fentanyl patch, 10 mg Torodol every 3 hours and added 1 mg Ativan every 6 hours. Other than making me woozy, we hope this will control the breakthrough pain. It's been 45 minutes since I made the changes and am still waiting for pain relief. However, the Ativan is giving me a nice buzz.

I had to write down the dosing schedule to be sure I get it right this evening. My goal is to get the pain under control so I can sing with my choir this weekend at our two performances. That's Dr G's goal too. It's always good to be on the same page with your doc.


For those who live in the greater Seattle area, check out my choir Dunava at the NW Folklife Festival:

Saturday 5/28 at 12:50 PM in the Center House Theatre. Get there early to find seats, it's a small venue and we are the second or third group in the set.

Sunday 5/29 at 3 PM. We open the all Bulgarian concert with the Radost Folk Ensemble and Orkestar RTW. Again, arrive early to get good seats.

You can also hear Dunava on last year's limited edition CD, Roots and Branches: Live from the 2010 Folklife Festival. Copies will be for sale at the Folklife Store, in the Fidalgo Room at the corner of Republican Street and First Ave N, by the Key Arena.

Abraxane #3 plus comedy of errors

I was scheduled to have the third dose of Abraxane yesterday. I'd been complaining of low back pain and pain in my right leg all weekend, so on Monday I didn't feel dafe driving myself. What if I had more mets and was in danger of a fracture? I'd already been lucky the first time that I experienced the pathological fracture while at home and not walking the dog, driving the car, or out and about elsewhere.

So Rik drove me and I arrived extra early at 8 AM (for my 9:30 lab appointment). The lab saw me pretty quickly, but again there was a computer problem with the orders Dr G wrote and "signed" electronically while I was sitting in the room with him. The SCI nurse called his office more than a few times; his staff paged him but he didn't answer; and in the end it was almost 1 PM before they could start any of the treatment. Thankfully my friend T was there to keep me company the whole time. We got some lovely borscht and pieroshkies for lunch and eventually I got everything: Decadron the steroid, Zofran for nausea and Abraxane.

In the middle of all this I was of course still in pain. On Sunday I had taken the maximum permitted amount of Vicodin with really limited pain relief. On Monday to took two Vicodin at 8:30 Am and two more at 1:30 PM but the pain only got worse. Dr G wrote orders for morphine but I recalled that morphiine didn't help too much with pain last summer. So I ended up taking intravenous Dilaudid. Between that and a hot compress, my back pain soon eased.

The Dilaudid made feel both loopy and me nauseous and I vomited several times by the time I finished the Abraxane. So I got some Ativan for the nausea. T gave me a ride to Dr G, who wanted to see me about the pain issue. (Thankfully no vomiting in the car.) Rik met us there.

I explained all the Dr G and he sent me off for immediate spinal xrays. Given that it was 5 PM by this point and he couldn't reach an in-house radiologist, he viewed the films himself. There is an ambivalent area in my sacraum (where we already know I have mets). My pain was radiating from the lower right to the right leg and even making the skin tender to the touch, much in the way that pain from the sciatic nerve behaves. So it might be sciatica or it might be mets. Dr G wrote prescriptions for Fentanyl patches and for ketorolac (Toradol), a non-steroidal anti-inflammatory, and we went into the Minor and James pharmacy to get them.

While we were waiting, in runs Dr G. He'd reached a radiologist at Swedish hospital who confirmed that there was no danger of an immediate fracture (which would have been the reason not to send me home). He'd placed a call to my orthopedist, Daniel Flugstad, and promised to contact me today with Flugstad's take on things.

We had a mutual hug fest right there in the pharmacy -- Dr G hugs Rik, Rik hugs me, Dr G and I look tearfully into each other's eyes. No hugging, it's not frumkeit for unrelated men and women to touch outside of the doctor-patient examination. For him, not for me. But the tearful glances of relief more than make up for any lack of hugs.

Rik and I finally arrived home around 6:30 PM. I stuck the first Fentanyl patch on my arm, got undressed, ate a snack and went to bed. With Dilaudid, Ativan, and now Fentanyl in my system, I could barely stand upright. I slept well all night and woke up rested this morning.

And now for the latest news. I still have back pain. I wasn't sure at first, as it's been creeping up on me slowly all morning. I felt fine in the shower, eating breakfast, even walking the dog for a few blocks. But sitting at the computer typing and talking with the health insurance companies about bills, I've notived an increased in pain, even through the FEntanyl. So I took one of the ketorolac pills and will hope that takes care of any breakthrough pain.

I still don't have any more news about an appointment re gamma knife, but Dr G said his staff would take care of it. I learned this morning that Dr G has spoken with Dr Flugstad and am waiting for a call back from him with an update. I will, of course, report this morning's breakthrough pain. I called my primary care physican to keep her posted on all of the hoohah. And I will keep all of you posted as this comedy of errors continues.

Wednesday, May 18, 2011

A sunny morning helps

After spending more than 12 hours in bed, I awoke today to sunshine and warmer temperatures. Given that I'm a basically balanced person, this should help me return to some equilibrium after yesterday's news about brain mets.

I cried myself to sleep yesterday (after taking some Ativan so I wouldn't stress too much). But in my grief and fear, I remembered that one of the women in my cancer support group has had metastatic breast cancer almost as long as I have, and she's had brain mets almost all that time. I need to talk with C and find out what treatments she's had.

The other thing Dr G did yesterday was administer a longer gross neurological test. He always does the same things: close your eyes and hold your arms out palm up, push against me, pull me toward you. Yesterday he added touch your finger to my finger, then to your nose, then to my finger again (both hands); stand up and hold your arms out palm up; etc. At the end he said my cerebellum appears fine. So my worries of immediate brain difficulties were eased.

For today, I am going to walk the dog, run some errands, get caught up on email, write a talk for this Sunday's synagogue annual meeting, and finish some ironing. Maybe watch a little TV while I iron. I plan to go to rehearsal tonight and basically live as normal a life as I can while we figure out what to do next.

Tuesday, May 17, 2011

Brain mets

Possibly one of the scariest things a patient can hear (after "You have cancer" and before "There's nothing else we can do for you") are the words brain metastases.

Last week's brain MRI showed three lesions in my right cerebellum. They don't behave definitively like cancer, but as the radiologist who read the scan said to Dr G, what else could they be?

So the feeling stupid, making typos and feeling not-quite-vertigo were worth reporting and not related solely to starting the new chemo combo or tapering off the antidepressant (which it looks like I will need to start again anyway).

It's going to take me some time to wrap my head around this news. Here are the brief things I know so far:

1) I will see my radiation oncologist, Stephen Eulau, to get his opinion on whether or not I should have cyber knife or gamma knife treatments. Since these are about $80,000 per lesion, and I have three lesions, the insurance company may not cover the procedure, which Swedish does perform (cyber knife).

2) Dr G is against whole brain radiation, which he says will leave me feeling much more stupid, and prone to make many more typing errors, than I feel now.

3) I will continue on the Abraxane for one more week, and next week's labs will also test a sample of CA 27.29, my tumor marker. If the tumor marker shows a decline, then we might continue the Abraxane/Avastin combo. If it continues to go up, then Dr G will consider changing to Xeloda, an oral chemotherapy which he believes is more proven to cross the blood/brain barrier.

The active drug in Xeloda, 5 FU, is the one that put me in the hospital in 2009 with severe infections. However, if I'm monitored more closely, and given a lower oral dose, instead of a larger intravenous dose, it might not prove so toxic.

Like I said, this is a lot to digest. I'm going to bed now and will write more tomorrow. Those of you who live nearby and want to talk, I'm just not up for it now, but Rik might be.

Abraxane 2/ Avastin 2

Yesterday was another six-hour-long day at the Cancer Institute. One of the doctors was back from a week's vacation and so the lab was hugely busy, even at 9:30 in the morning. After waiting more than an hour, I finally had my port accessed and labs drawn. More than an hour after that, I was called back to the infusion chair, where eventually the nurse confirmed with Dr G that my counts, although a smidge low, still permitted me to receive treatment.

My friend G had been visiting with me until this point, and then another friend came by. We shmoozed while waiting for the pharmacy to prepare my drugs. I ordered us some luch from Mediterranean Kitchen, which J was happy to pick up.

I started the Avastin infusion around 1 PM, and it ended around 2:15 PM. (Next time the Avastin will shorten to only 30 minutes, which is where it will stay.) Then we changed over to the Abraxane (the actual chemo), which only takes 30 minutes. I was unbuckled from the chair around 3:15 and went home to crash.

I slept for three hours on the sofa, at which point I decided to just get into bed. I thought this cocktail was being given with Decadron (a steroid) AND Zofran (an anti-nausea drug), but evidently I didn't get the Zofran the first time, and there were no orders for it this time. So I toughed it out, but I was nauseous by 6 PM. I took some of the oral Zofran I have at home, and will be sure to ask Dr G today about including it in future orders.

I got up again at 9:30 and ate a piece of pizza and drank some water, then went back to bed. I was really woozy walking around the house last night, which was likely due to all the drugs floating in my bloodstream. I experienced a little abdominal pain, which is associated with the Avastin, but nothing else.

I slept until 7:45 this morning and feel better today. I took the dog for a walk and am about to head off to see Dr G and get last week's the brain MRI results. Will post more when I have info.

Friday, May 13, 2011

Scalp mets

It was the weirdest thing. Out of nowhere, I touched my head and found blood on my fingertip. The largest scalp met was bleeding! I applied pressure and after a few minutes it stopped.

This happened on Wednesday evening. I called Dr G on Thursday morning, the nurse called back that afternoon and told me he says wait until I see him on Tuesday and he will examine my head. Of course, if it happens again and for some reason won't stop bleeding, then we call.

This largest of three mets has been changing in the past two weeks. It used to be domed, like the others. Now it's flatter on one side and a tiny bit indented. If course I can't see it myself, but to my touch it feels different. Don't know if this is chemo-related and if it is, what it might mean....

Now I am off to get my brain MRI. I get the results on Tuesday afternoon.

Tuesday, May 10, 2011

No chemo yesterday

My while blood cell counts were too low for me to receive chemotherapy yesterday. I need to stay away from large groups of people to prevent exposure to an infection. My friend D sat and visited for an hour while I waited for the lab results; it always feels better to have company.

After leaving the treatment center, I went straight to Dr G's office to receive my monthly injection of Xgeva, the new bone strengthening drug I've been getting instead of Zometa. I told the nurse about my week of symptoms (stupid, fatigue, runny nose and that on-the-edge-of-feeling vertigo), and Dr G came in to talk with me. Between the stupidity (which sometimes gets call "chemo brain") and the not-quite sense of vertigo, he wanted to rule out the possibility of brain metastases and ordered a brain MRI, which I haven't had in a while.

I did a little research and found that vertigo (also called Benign Paroxysmal Positional Vertigo or BPPV), can be related to treatment with gemcitabine, the chemo I just finished. Read here for more information.

So I get an extra week to recover and feel better, I'll have the brain MRI on Friday, and get the results next Tuesday.

I also learned that the Abraxane/Avastin combo is given in this order:
Abraxane on days 1, 8, 15 (of a 21 day cycle)
Avastin on days 1 and 15 (of a 21 day cycle)

I like having more information!

Friday, May 6, 2011

Still tired and stupid

I think I may have figured out the tired and stupid feelings. The day before I started the Avastin/Abraxane combo, I also stopped taking my antidepressant. I'd decided to taper down after being on sertraline since last July. It took about six weeks but I finally had the last dose last Saturday. A friend warned me that going from 12.5 mg to 0 mg would be harder than going from 25 mg to 12.5 mg, and boy was she right! So it's possible that my fatigue, insomnia, and feeling stupid is more related to stopping the sertraline than to starting the new chemo combo.

At any rate, having three evening activities in a row this week didn't help either. Somehow I got through everything (still feeling stupid) and plan to do practically nothing today. I will forego yoga so that I don't have to drive while feeling this way. Plus that will allow me to take a nap. I hear the sofa calling now!

Wednesday, May 4, 2011

Is this chemo combo making me stupid?

Okay, maybe I've overdone it the past few days. I had evening activities Tuesday and Wednesday (and more on Thursday and Friday). I'm trying to live my life -- stay connected, run errands, meet a friend for lunch. But I feel as though this Abraxane/Avastin combo makes me both stupid and tired, as though I am running at 50% of normal.

Stupidity

At last night's meeting I had some trouble making coherent sentences. My typing has been a little incoherent, so I've had to redo most of my computer interactions. At rehearsal tonight, I had difficulty concentrating on song words, even for the songs I know by heart.

Fatigue

It seems like I am tired all the time. Not necessarily sleepy at bedtime, but constantly run down. Last night I was so tired I stumbled around the house, trying to get ready for bed, but I couldn't fall asleep. (And then I had massive foot cramps every hour, all night long. Okay, maybe lack of sleep is affecting me too.) I hit a wall this afternoon at 3 PM and fell sound asleep on the sofa.

And Monday's was only the first dose of this chemo combo.

Tuesday, May 3, 2011

Abraxane + Avastin

Yesterday was a long day at the Cancer Institute. We arrived at 9 AM and after a short wait, the charge nurse told us that this very day was the first business day Swedish starting using a new consent form. So we walked over to Dr G's office (avoiding most of the pouring rain by going through the hospital walkway).


Dr G explained about the new form, we both signed it, and then he showed me the Swedish Ca Inst's usual protocol for Abraxane , which included Avastin. I'd never had Avastin, and although there has been recent speculation about its effectiveness against metastatic breast cancer, Dr G wanted me to try it. We trudged back to the Ca Inst, signed form in hand.


About Avastin: because it was studied with other chemos and never on its own, the side effects are those related to chemo (generalized weakness, pain, abdominal pain, nausea & vomiting, poor appetite, constipation, upper respiratory infection, low white blood cell count, kidney problems, bleeding problems), diarrhea, hair loss, mouth sores, headache). We'll see which ones I may get.


Because of the last minute change to include Avastin, I had to have some additional tests to check my creatinine level via blood work, take a urine sample as well. I passed all the tests, but meanwhile had to wait for the results. Then it turns out that when these two drugs were studied together, the Avastin was always given first. Since I gave the urine sample more than an hour after the blood, more waiting. We had a friend to visit with, so it wasn't so bad, but still... Dr G did not choose one of the boxes on the Avastin quantity, so the nurse had to make another call to him to determine the dose.


At 1215 PM, Rik and J went to get us some lunch. I had just taken my first bite of Mediterranean Kitchen's farmer's wings (the BEST!) when the nurses showed up to start the Avastin. I had a 4 mg dose of the steroid Decadron as a premedication. The Avastin was given this first time over 90 minutes. It finished around 230 PM with no poor side effects. Our friend J said goodbye after spending a chatty and very garlicky three hours with us.


Next I asked about the IV Zofran anti-nausea med, which it turns out Dr G had not ordered, so the nurse had to call him again. I got the Zofran, had to wait another 20 minutes for it to provide protection, and finally got the Abraxane. Thirty minutes later, we were able to leave. All in all, I spent almost 8 hours in that chemo chair and had a backache you would not believe. Thank goodness we had my iPhone and Swedish's WIFI as well as books and company!


On the way home I simply had to have ice cream, so a quick stop at Molly Moon for some ginger ice cream with hot fudge put me in a better mood. We came home, I quickly fed the dog, checked email, got into my pajamas and was asleep by 6 PM. Rik walked the dog and stayed up a while longer, but he too was asleep by 930 PM.


I woke up today feeling more energetic, with no ache in my ribs at all, even after some hard sneezes. Now it's time to walk Bob and get on with my day. I've already showered, eaten breakfast, re-ordered new prescriptions, checked email, and blogged here. More news later.

Thursday, April 28, 2011

Scan results and treatment update

Last week's ultrasound results were neither positive nor negative. I continue to have stable disease in my liver, meaning the Gemzar didn't really work all that well for me.

Dr G has decided to put me back on Abraxane. This is where I started chemo exactly a year ago. He did not order scans before I started the Abraxane. After nine or so treatments, I had a CT scan which found the liver mets. We don't really know when they appeared.

He switched me immediately to Doxil, which I did not tolerate. In the past year I have also taken Adriamycin, high dose Faslodex, Navelbine and Gemzar, all resulting in stable disease but no reduction in liver mets and continually increasing CA 27.29.

So, since I tolerated Abraxane well last year, I will start on it again next Monday. At least I know what to expect -- low blood counts, hair loss, nausea, fatigue and maybe peripheral neuropathy (although I don't remember this from last year).

Last year I had all my hair buzzed off just as it started to fall out, but I still had stubble all during the spring, summer and fall chemos. I was never baby-butt-bald. So I think I will try to live with hair loss this time instead of buzzing it all off again, and see if it does really all fall out, or if it only thins.

It does mean I will likely be hairless when we go out of town for a family celebration in June. I still have the wig I bought last year and many, many scarves. If I am bald, everyone can just deal with it. 

Dr G knows about our planned trip and hopes to see some results before we leave. I think that means I can look forward to another scan mid-June. As he told me today, "You're in good shape. We just have to find the right thing for you." We had a moment of emotional connection together and decided we are exactly the right doctor-patient team together.

(If you search through my blog for posts on Abraxane from 2010, you'll read that at the time I was dealing with a severely dislocated elbow, lymphedema, fear at starting chemo for the first time in eight years, and incipient depression. After having been on chemo for most of the last year, I can safely say that my fear is reduced, I know what to expect from Abraxane this time, my elbow has healed and I am no longer clinically depressed. But I think I will stay on the low dose of sertraline for the time being, just in case.)

Wednesday, April 27, 2011

SOB

No, it doesn't mean son of a bitch. SOB is medical alphabet soup for shortness of breath, which I've had the past two days, along with some pain upon a deep inhale. Nothing hurts when I press against the area, so I may be anemic (required a blood transfusion a few weeks ago). Or there may be a tumor pressing against a rib, or my liver, or a lung. I don't want to self-diagnose, so I will report these symptoms to Dr G tomorrow and find out what he thinks.

Meanwhile last night it was challenging to walk from the restaurant to the car (although I did eat a big dinner -- yay post-Passover pizza!). In order to breathe easily, I fell asleep on my back last night. Back pain woke me after an hour and a half. I couldn't get comfortable and started to grow anxious about not being able to breathe deeply. Some Ativan helped me relax and fall sound asleep until 9 AM.

I see Dr G in the morning and will report all these symptoms to him, as well as get his take on next steps in treatment.

Monday, April 25, 2011

Ultrasound

Last week I had another abdominal ultrasound. Dr G likes to go back and forth on imaging scans. Sometimes I have a CT, sometimes an ultrasound, even occasionally an MRI. But he doesn't like me to have too much radioactive contrast, so last week's scan was an ultrasound.

My last ultrasound was in November, and my most recent CT was in February. I asked for, and have received, the radiologist's written report, since I won't see the oncologist until Thursday. However, I don't want to comment on it until I have Dr G's take on the scan and his projections on what to do next: continue on Gemzar, start a new chemo, or maybe try estrogen priming, something he's mentioned recently.

I'll know more on Thursday....

Chronic insomnia

This not-sleeping business is for the birds. I get into bed around 11:30 PM and invariably fall asleep around 2:30 AM. How do I know this? It's the last time I look at the clock until 5:30 or 6 when Rik and Bobka the dog get up. Then I wake up again once an hour, every hour, until I give up and get out of bed around 9 AM.

Is it due to chemo? I have no answer for this one, but I haven't had treatment since April 11.

Is it due to tapering off the sertaline (anti-depressant)? I've only got a week more until I am off it completely, so we'll see what happens next week.

Is it due to not enough exercise? Even when I take the dog on a really long walk for 20 blocks, I still have trouble falling asleep at night.

Is it due to napping in the afternoon? Well, this is a no-brainer. But if I don't sleep at night, and I'm tired during the day plus fatigued from chemo, a nap seems inevitable.

Just grousing here -- I don't really want advice. But I am tired of being tired.

Thursday, April 14, 2011

To cut or not to cut?

My post-chemo, newly curly hair had grown in clumps, making me feel a little bit like Bozo the Clown. I was faced with one of the most challenging post-chemo questions a woman can ask: Should I have my hair cut or not?

You see, women don't usually expect to go bald at any point in their lives. Okay, maybe some changes in texture due to biochemistry associated with pregnancy or menopause, but bald? That's for men.

So when I lost my hair to chemo, it was a shock in more ways than one. Not only did I not look like myself to myself, I actually looked like my father even more than in the past. (He started balding young, and I've always had his high forehead.)

Watching my hair grow back from practically nothing over the past few months has been a good reminder that even chemotherapy leaves the body eventually. I began to look more like myself to myself, albeit myself with the kind of 'do I used to pay money for. I still didn't have bangs, so my high forehead was clearly visible. My new curls gave hope to other women in my support group who lost their hair to chemo.

But lately even these new curls felt out of control, so today I took the leap and decided to have my hair cut. The new cut is a tad shorter than I wanted, but more even all the way around, and closer to the shape of my head. And since hair does grow back eventually, when it does, it will grow evenly and not in clumps.

Tuesday, April 12, 2011

Gemzar dose #5

Yesterday I had my fifth dose of Gemzar (the first one of the third round). Although everything was slow to get started, I had a hot mocha in my thermos, cold seltzer in a can, a good book (American Rose, the new biography of Gypsy Rose Lee), the daily crossword puzzle and a couple of new apps to play with on my iPhone. My hematocrit was a little bit down, but it's been lower and Dr G has still decided I should get treatment.

I ran an errand and picked up ground sumac at the new Penzey's Spices store downtown, then came home, spoke to my Mom and my Mum and took a three hour nap on the sofa. Made some chicken soup for dinner, enriched with leftover meatballs and vegetables, a beaten egg and lemon juice (sort of a poor man's avgolemono soup, not nearly as good as at the Continental). You can find a recipe here.

In the evening I ran a small fever of 99.7 degrees, but a Vicodin  brought my temperature down. At 4 AM I awoke with another fever. Luckily I keep meds bedside as well as a glass of water. I sleepily reached out and took another Vicodin, which soon addressed the headache, achy back, night sweat and other fever symptoms. Of course, at that point I realized I had to use the bathroom, so I took my temperature and saw that the fever was only 99.3 degrees. (I am supposed to call the oncologist if a fever hits 100.5 degrees but decided it was the better part of valor to take the Vicodin and not wake anyone else at 4 AM.)

Eventually I fell back asleep around 6 and stayed in bed until just after nine o'clock. I plan to take things easy today. If the runny nose continues and the fever climbs to that magic number, I promise I will call the doctor's office.

Thursday, April 7, 2011

Next steps

I saw Dr G briefly today while getting my monthly shot of Xgeva, the bone strengthener that replaces Zometa. (The nurse wanted him to oversee her giving the shot, and indeed he caught her recapping the needle, evidently a no-no.)

Dr G wants me to have Gemzar next Monday (dose #5). He also wants me to have another MRI of my liver. My recent tumor markers indicated a slight increase from the previous lab, but tumor markers alone have not been conclusive for me in indicating disease progression. The MRI should indicate if the liver mets are larger or more numerous than the last time, and whether or not the Gemzar is effective. I have asked for no chemo on Monday April 18 because of Passover beginning that night (we will have a houseful of people) and I won't have chemo on April 25, since my appointment with Dr G is later that week. Then we will review the MRI results and make a plan.

Meanwhile I'm waiting for a call to schedule both Monday's chemo and the MRI. I guess I'll need a ride to and from that test, since going headfirst into the MRI tube exacerbates any claustrophobia I might have. I do wear an eye mask to prevent me from seeing just how close the top of the tube is to my face. Fresh air blows at all times, plus they give you a panic button to hold in case it gets too intense. Still, I think I will take some lorazepam just in case and let someone else do the driving, whenever the test will take place.