One more pin cushion experience

Today I got my Neulasta shot so my WBC doesn't go down so much. That shot hurt! I think I have another lovely bruise coming along. Then I took a nap. In the air conditioned bedroom.

Anyway, I have been reading Lance Armstrong's book 'Its Not About the Bike' about his cancer experience. Back in 1997 (or 1996 - something right around then), standard chemo treatment for testicular cancer was four rounds of chemo but each round was five hours a day for five days a week. That makes my wonderful experience seem like a walk in the park.

No I didn't watch the documentary that I told everyone about, Crazy Sexy Cancer. I did tape it and plan on watching it this weekend.

Okay, like I have said before having cancer means you lead a boring life. Not much else going on.

I had a wonderful day? How was yours?

I was at Lahey from 1030am - 3pm. I was weighed, blood test, vital signs, met with two doctors, and then spent two hours getting IV of chemo. There was a very nice volunteer who came around and offered us some food so we split a turkey sandwich. I had apple juice. I have two lovely bruises growing on my arm as well, one is really on the back of my hand.

Anyhow, in meeting with the doctor, we decided that in hopes of preventing a return adventure through the ER or any admission to the hospital due to low blood counts, that I have a prescription for an antibiotic to take for seven days starting on Sunday. But if I run a fever, I still need to call (but this time it will be between 830am - 5pm.) I also have to go back tomorrow for a Neulasta shot which is also supposed to be preventing the low blood counts. (Before Neulasta was available it was routine to give a round of preventive antibiotics between chemo sessions.) Double teaming this one here. We'll see what happens with that.

Also, in speaking with both the doctor and the nurse, due to the limitations of only having one arm for all of these injections and the number of additional chemo sessions, I get to have a portacath installed sometime soon. It is a little round disk the insert under the skin just below your collar bone that has a tube that goes directly into your blood veins (not the important ones, I think it might just go to the jugular). Then all future blood draws and IVs, chemo or otherwise, will be done through that. It is done as a day surgery with one prep day before. I guess that means I have lots of Lahey visits in the next few weeks. With needles, and incisions, and stitches. Yick! I just think the whole idea of having something under your skin that goes into a major vein is basically just grossing me out.

Walter beat me at scrabble once the drugs kicked in. And was winning the second game as well. Did anyone have a more exciting day than me? Okay, nap time for me.

I feel like a human being today!

It must be time for another chemo round if I feel this good. Nothing like a bunch of drugs to make you feel like crap. (There goes that technical term again.) Yep, tomorrow is the day! I get to spend basically the whole day at Lahey, yippee!! NOT!

I have to make sure I don't schedule these middle of the day appointments any more. I have to be there at 10:45 to give them some blood, then I wait around and meet with the doctor, after he gets to see my blood counts, and then I get to wait around some more so that he can write the orders and they can get the drugs ready. I probably won't leave until after 2. By then it will be nap time. If it was a little earlier, I might be able to go for a walk after. If it was a little later, I could do some errands in the morning.

I do have a lovely collection of bruises to show off. There are a bunch on my arm from the IV, blood tests, and shots and some more on my stomach from shots as well. They are a lovely range of green and yellow. I will have to find a matching outfit to wear!

Bleeeccch!

Lady bugs taste disgusting! There was one floating in my water glass and I took a sip without looking!!!!!!!! Yuck, yuck, yuck, yuck, yuck, yuck, yuck, yuck, yuck, yuck, yuck, yuck. It was foul.

Anyway, in rereading my earlier posts, I jinxed myself on Aug 15 by saying 'no Lahey visits for 2 weeks'. Boy was I wrong. Well maybe I was right. I didn't visit. I moved in. I will have to be sure to phrase that properly in the future so I can enjoy my two weeks between scheduled appointments.

A reminder to all, the documentary on Crazy Sexy Cancer is on TLC at 9pm eastern time on Wednesday night. Apparently there is a book out with the same name by the women in the movie as well.

Yes, I feel much better this morning. A good night's sleep does wonders. I am going for a walk.

Life improves

I ate, I slept, I walked, I ate again. Time for a nap. However, I feel my evil twin has left the building at least temporarily... No guarantees on her return. I am just plain tired. Must be old age! ;-)

My two year old side is appearing again

As scheduled, my evil two year old twin appeared today in great form. I got fed up waiting around Lahey to be let out AND the nurses would never respond to my page with anything more than 'we'll let your nurse know'. To be fair I think the nurses are slightly understaffed and there was a patient on the floor who was very difficult and needed a lot of attention. However, neglecting other patients to the point where they get upset doesn't help the situation. I went down to the nursing station to complain and get released from the hospital after they had the orders for two hours and didn't bother to respond to my requests.

Anyhow, I am now home. I am looking forward to my own cooking and a good nights sleep. It is possible that the evil twin is caused by not feeling well, not getting enough sleep for several days, and being ignored.

The cat is mad at me. I was gone too long. He forgot who feeds him evidently.

New correction

Yesterday the infection fighting WBC was 20, today it is 410. (I think its because they checked it so early in the day.) This means home tomorrow probably, not Sunday.

A correction a day keeps the doctors away. I try to be accurate but obviously am not.

Additional visits today:
1020 am - pick up breakfast tray.
1035 am - doctor with revised news.

A restful night in the hospital

Its a good thing I fell asleep early. It is not possible to get 8 hours of uninterrupted sleep here. This has been the schedule:

12 am - IV antibiotics for 45 minutes
4 am - temperature check (its staying down)
535 am - blood test (Why? Do you have better blood this early??)
615 am - nurse with pill
645 am - vitals check
755 am - nurse with shot, IV antibiotics
815 am - breakfast delivery
830 am - maid to sweep and dump trash
850 am - new linens delivery
930 am - nurse to disconnect IV
1010 am - doctor for daily check (not going home until at least Sunday)

It will continue like this all day long. My rule, nap often and catch up on sleep when I get home.

There are two parts to your WBC: regular and infection fighting cells. My total WBC is getting there but my infection fighting cells are 20 - they should be 500.

Also, the report from home: Walter found a dead mouse in the living room. My question: was it already in the house or was it retrieved as the chipmunk was? Maybe the cat was bored because I wasn't there and he was saving me a present!

Correction

I was misinformed. Your WBC should be 4100 - 10,100. Mine is now 1100 which is still too low and I have a fever. Grrr. But I did take a 2 hour nap.

Yes, I am fine but do you know what your white blood count should be?

I didn't. Its supposed to be 10,000. Mine was 820. I had a fever and chills and the on call doctor sent me to the emergency room where I waited 10 hours to be admitted. They want to keep me here for 48 hours at least until my cultures are clear, my fever goes away, and my white blood count starts going up. So Saturday at least. Another fun weekend! And, I will end my number of consecutive days with a walk - I have gone for a walk every day since July 14.

Um... after 10 hours in the ER, I never again will have a fever after 5pm. I said that to the doctor and he said that if I have a fever during the day, I wouldn't have to go through the ER. Not happening. Most of the time was spent waiting for doctors who had other sicker people to see. I think ERs are for car accidents, injuries, allergic reactions and stuff that needs to be seen right away. They shouldn't be for admittance to the hospital. The on call doctor said 'I don't think you need to come by ambulance'. Thats not happening either! Last time I came to Lahey in an ambulance, I didn't have any shoes with me.

The real problem with low white blood count is no ability to withstand infection. So I really can't have a lot of visitors and have to wear a mask if I leave my room. Apparently I have a very popular room. Helen Anderson got a phone call and the nurses wanted to move Gerald to another room. I do have a TV and internet access so I can bore everyone else. Here at hotel Lahey, if you don't call in your meal orders, Room Service calls you. All the rooms are private and have their own shower. So I am just lying around feeling my temperature go up and down and hope the chills don't come back. Yesterday was much better - I watched 3 hours of TV with the cat sleeping on my stomach.

Further confirmation

Way back on June 26, I noted that I had visited the Marble Museum in Procter, VT and apparently missed the highlight of the place - the restroom. Well, today I have further confirmation as reported in the news is that the Marble Museum is owner of the fourth best restroom in the US. The others in the top five are: Jungle Jim's International Market, Fairfield, Ohio; Catch 31, Virginia Beach, Va., Mix Lounge at Mandalay Bay, Las Vegas, Nev., and Fandangles', Flushing, Mich. Further evidence multiple road trips are warranted. Now, I do hope these live up to my expectations and can say I have definitely seen some very scary public toilets in my time - both outside and inside the US.

The most off beat facility I have ever seen is the two seater outhouse on the Appalachian Trail on the way up Saddleback which features a cribbage board between the two seats. We did ask the ranger about it, and he said 'why not?'

I did take my walk today and my bruises are now a lovely shade of yellow/green.

At least I wasn't the patient

Yesterday, Walter had to go to Lahey (he's fine) and I got to be the driver and 'waiter arounder'. It was a nice change. We had to return to the same section of Lahey where the nurse said to me 'don't worry, you don't need local, it never hurts anyone'. I reminded Walter of this and definitely got a very dirty look in return.

There were OMWAHs lurking in the parking garage. Unfortunately, that is where they get out of their cars and transform from drivers to 'lost people in the giant parking garage'. 'Where did I park?' 'I'm not really taking up two spaces.' 'All the floors look the same. My car must be here some place.' 'Which way is the exit?' The scariest thing is when OMWAHs (now this is very rare) talk on their cell phones while driving! We did see one of those crossing through the crosswalk right in front of us (no signs of yielding).

Anyhow, we survived our excursion. I took a two hour nap to recover.

So how long does this all last?

I was thinking about. A lot of women with BC say its a year out of their lives. This all started with a bad mammogram back in early May. Then two surgeries in June and July. Now four rounds of AC at 2 weeks apart starting August 1, they should end Sept 12. Then I start 12 rounds of weekly Taxol so that should end about December 12. Then 6 or 7 weeks of daily radiation - which puts it to about the end of January. So a total of 8 months of fun and games!

I am working hard to come up with a list of good things with cancer and chemo - I don't work that much, I can lie around and read books and watch movies, naps are always good, I am losing weight because nothing tastes good/feels like it wants to stay down, the cat is happy I am home to cater to his every whim. Also, I have gone for a walk every day since I got that yucky drain taken out and plan on continuing through chemo and radiation. Are there any more good things? I am working on it - there must be others. Oh, my shampoo expenses are way down. Hmmm... I will try to come up with more.

I know there is a big FAT list of bad things about cancer and chemo but I really don't want to list those.

What a fun weekend!

NOT! I think I have spent most of it fighting nausea. The best cure for that are medications and naps. Lots of naps, lots of sleeping in general. Basically I feel okay except for the nausea which is most of the time, well, maybe just lots of the time. I have been able to eat for the most part but more foods are losing their appeal. Wheat bread, crackers, etc.

I did figure how to cut my hair really short. Hang my head upside down and trim... It is very short and going fast.

Anyhow, when not feeling well a good cure is trashy novels and low quality movies. Last night we watched Cannonball Run. Probably one of the best casts in one of the silliest movies ever made. Yes it was entertaining but I fell asleep before it ended and had to watch the end this morning - not that I didn't know what happened...

But really the question of the day is how long after surgery are you supposed to do the exercises they give you? After my second surgery, I was given a set of exercises to regain the mobility in my arm. I was told do them twice a day (which I 'usually' did) and that I should be able to put my arm up over my head in one month. Well, I can mostly move my arm as before with only occasional pain when I do something stupid but am I supposed to be doing the stupid exercises too? Somehow they have been forgotten... I don't go back to the surgeon until October. Hmmmm... the guilt on this is very elusive.

Okay, a very rambling post. Not much of substance to talk about.

Enough depressing stuff

Too much depressing stuff. I will write about the happy go lucky cat today. (Some one was asking about him anyway). His life hasn't changed. The chipmunk hasn't come back. He is still waiting for it. He is incredibly patient waiting for the chipmunk (maybe he knows it will take a long time). If only he could be that patient waiting for his dinner. Dinner is served to him at 5:30 pm. He starts asking for it around 2pm. If I go out at any point during the day and return, then he starts asking the second I walk in the door, even if it is 11am. Its not like there is no food in his dish. He thinks I leave, I come home, I feed him. Too bad he can't tell time.

Otherwise, things are normal for me. Still big fat bruises, still nausea, still losing hair. Or am I shedding? Animals shed but people don't 'shed', they 'lose' their hair... Weird use of the English language. I did cut it shorter last night (sorry, no new picture). May do some more trimming today... I'll see how it goes.

Thoughts on hair loss

I was told it was inevitable for me due to type of chemo I am on but that it will grow back - 6 - 8 weeks from when I am done with chemo - so February. (As Walter puts it, his may have fallen out over a long period of time but mine will grown back!) anyhow, my preference for hair loss would be:

First anything that is normally tweezed or shaved. That is the unwanted stuff any way. Then all gray hair, run away, flee, leave, go, be gone! Third, any none essential hair - like the hair on your arms - you don't really need it anyway. Last of all should be the hair on your head.

Unfortunately I am wrong. It is not following my preference.

Chemo 2 update

I went, I survived.

Nausea - check
No appetite - check
Bruises from needles - check
Fatigue - check
Thinning hair - check (why do the gray ones fall out LAST? They should go first, they have been there the least amount of time!)

However the crabby space alien has not yet reappeared but is lurking near by.

The blood tests from yesterday were perfect! (So maybe my plan of eating crap after the test worked!) They did give me the Neulasta shot (prevents blood counts from tanking as badly) today so I don't have to go back tomorrow. No Lahey visits for two weeks!

Smart planning!

So yesterday I got my blood test before chemo today. I also made sure they took blood before I had fried Chinese food for lunch and yummy Cambodian food for dinner! Just want to make them think I eat better than I did! However, the tech who took blood yesterday left me with a giant black and blue mark on my elbow. Well, blood test vs. IV. I think I'll take the blood test!

So when you go to Lahey clinic, it is very important to park the correct end of the parking garage. Yesterday, I think I was on autopilot and parked near the east entrance where I have been going for most of my appointments recently. I started walking towards the southeast wing, where the oncology/chemotherapy department is. Halfway there, I realized I was going in the wrong direction - I needed the blood lab which is in west. I almost didn't need to go for a walk after that little detour.

I think its hair today, gone tomorrow. Bummer. Big time.

Upcoming documentary

If you want an idea of what cancer can do to you and how keeping a positive attitude is so important, take a look at www.crazysexycancer.com. It will be on TLC on 8/29. Go check out the trailer.

Today is the day before my second chemo treatment. As you readers know, I had lots of fun with side effects: 4 days of nausea and naps; 5 days of feeling crappy (that technical term again) but not feeling nauseous, just like I was run over by a truck (perhaps running a fever will do that); and then 4 days of almost feeling normal for periods of time. I wonder how the next two weeks will go. Hair loss, chemo induced menopause with all the side effects, mouth sores, fevers? Who knows?

A chemo treatment isn't just one little doctor's visit. Today I get to have blood tests. Tomorrow we have to be at Lahey at 730 AM for a doctor's appointment and then the chemo IV for an hour and a half. Then I go back to Lahey on Thursday for a follow up shot to prevent my blood counts from tanking. Three days in a row of Lahey and needles. I am sure OMWAHs will be lurking as well...

The important thing for any event is to have the right outfit for it. I bought myself a special shirt to wear to my chemo treatments. (Okay, maybe I'll iron today). Maybe some photography classes would be helpful too.

Spaceshotitis

So this morning I am looking for my cell phone - had it in my pocket yesterday. Not in my purse, not sitting out anywhere, not being charged, no where to be found....Then its bill paying day so I need both checkbooks - which I had out earlier this morning. Got the bills together and only have one checkbook. Okay, find the phone, then find the checkbook. Called the cell phone, couldn't hear it upstairs. Tried again downstairs. It was in my purse (but I have this little tiny phone now). Then, there is my checkbook sitting on top of the bills on the sofa.

Another chemo side effect is called 'chemo brain' or loss of short term memory. It doesn't usually set in for a while into treatments but then I will have an excuse for this sort of stuff. Spaceshotitis is a technical name for it.

Lots of sleep last night so I feel relatively good. Robin Roberts of Good Morning America, who announced she had breast cancer and then had surgery, is now back at work. GMA is doing a series this week on living with breast cancer. I caught it this morning and will try to watch it the rest of the week.

There's no comparison

I think the differences are obvious. One picture is from 1982 and the other from 2007.

The 1982 picture was my visa picture to go to France to study. I think it was taken either in one of those photo booths or at an instant passport place. It isn't bad for travel documentation purposes. I always try to have a passport picture that looks like I just spent 8 hours in an airplane because that's what you look like when you get to customs. Does anyone look like a fashion plate when traveling?

The second one Walter took outside today and is my current, and short lived do. My first hair cut was more symmetrical and I probably used a hair dryer. (My hair dryer broke). Walter was trying to get me to smile and saying silly things to me. You can also see I am standing in front of the basement wall - cement with paint spots. Maybe a little more interesting than a passport photo backdrop. Age is a tiny factor as well as a few pounds....

For a brief period...

Actually for a brief period this afternoon, or perhaps most of today, I actually felt like a human being again. Alas, now I return to the crabby space alien. All of a sudden I feel like crap. Damn.

Food issues

Here's a good way to take the fun out of life. Make your favorite foods not interesting and also go on a limited diet. First I am not supposed to have spicy, tangy, vinegary, sharp, acidic, zesty foods. Just say 'mouth sores'. So that just eliminated spicy anything, tomatoes, citrus fruits were noted, pickles, etc. As well as the spicy coleslaw I made and ate by mistake. I think I can also skip the sauerkraut I have. I bought some Jujubes and they hurt my mouth too! Also, the idea of seafood has lost all its appeal. I have no desire to eat clams, scallops, shrimp, lobster, etc. Then cut out all alcohol and most caffeine. BORING!

However, home made mac and cheese was yummy, as was ice cream from (Kimball Farms at) Bates (It will always be Bates to me.), and quiche. Ice cream was great. Then we broke our ice cream scoop - cheap plastic handle+really hard ice cream from the freezer=broken handle! Yes I bought a new one but we suffered for a couple days! I will have to find some more things I like to eat. Its not that anything tastes bad but that a lot of things just don't appeal to me.... The fridge is getting pretty empty. Walter will figure this out soon and start asking for variety in what he eats. This could be tough.

Another trip around my roller coaster

Yesterday was so much fun - NOT! I woke up and felt relatively crappy but said okay, go to part time job and then job interview. Not a big deal. Had breakfast, brushed teeth - which was painful in places, went to part time job, still felt crappy, went home after 2h 45 min, ate lunch, brushed teeth - which really hurt, called dr's office (as this was a symptom they wanted to know about), got a prescription for mouth rinse, felt really crappy, decided if I can't work short days, I can't take a new job even part time so I canceled the interview, still felt really crappy, watched trashy novel made into trashy movie, cat took a nap. Then I realized that maybe I should take my temperature and lo and behold it was 100.1. Hmmm, could be why I felt so crappy all day. Took Tylenol, went for walk, felt crappy, ate dinner, used mouth rinse, whipped Walter's butt at Scrabble (he is still pouting), and my temperature went down....

As part of the lovely side effects your WBC tanks which can cause you to run a fever. Mouth soreness is a side effect of chemo as those are fast growing cells in your mouth. Untreated I guess it can lead to oral thrush (this is a nasty fungus that grows in your mouth normally under control but with chemo or otherwise compromised immune systems can grow out of control*)... How fun is this! It only hurts when I brush my teeth.

Today I took my temperature when I woke up and it was 98.6.

So why do people do chemo if it makes you feel like crap**, lose your hair, and give little roller coaster trips like this? It is to reduce the chance of cancer recurrence. You look at the relative decrease in recurrence of cancer. If you are given a 5% chance of recurrence in the next five or ten years without treatment, the benefit of chemo, depending on your type of cancer, is somewhere between 25-50% reduction, depending on who you ask and the type of cancer, of that 5% chance or 1.25 - 2.5%. If you are given a 30% chance of recurrence without treatment, the reduction risk is then 7.5 - 15%. The higher your risk of recurrence the greater the benefit or risk reduction of chemo. Yes there are some nasty long term side effects of chemo - congestive heart failure 0.5%, leukemia 1-2%, etc. - which make it less beneficial, so you really have to look at an individual's relative risk reduction. For me, I was told its about a 15-20% risk reduction. So by making myself so sick (and having such a wonderful roller coaster ride), I am making a big reduction in my risk of recurrence. Hormone therapy will cause another similar reduction. That adventure starts with radiation probably in December or January and will last for five years.

*I am not a doctor. I just look this stuff up on line to figure out what it is.

** crap or crappy is another technical term for overall sense of well being
.

I am turning into a two year old

What are the key characteristics of a two year old? Need for daily naps, picky eater, temper tantrums, crabbiness when don't get own way, and ability to pout. Well (and you can ask my husband to confirm this), I am developing some of these characteristics! Fair warning to all.

Nap, nap, nap ...

That's all I do. At first, I could blame it on the meds they gave me, but now I don't know. I know if my red blood count drops, I get will get tired, but thats not really supposed to be bad until 7-10 days after chemo - which is the end of the week - at this rate, I will be sleeping 20 hours a day!

I feel mostly okay though. Some bone pain - low platelets=bone marrow aches, some nausea - but if I eat it mostly stays aways, and general 'blahness'.

Anyhow, there was an article in today's Boston Globe which states that women with breast cancer who exercise at an average level 3-5 hours per week are less likely to die from the disease. It is still inconclusive on eating fruits and veggies but it also says to lose weight. I am going for a walk.

Accumulating side effects

I needed another nap today. Since they gave me so many different meds on Wednesday, it is not surprising I was tired then. Now I have moved on to needing a daily nap. The cat finds this wonderful - someone to nap with, life is wonderful. Then when I have slept too long (read too close to his dinner time) he can wake me up.

I can tell the AC is starting to kick in. It affects your blood counts - white, red and platelets. Low RBCs mean tired (duh, I think I got that one) but low platelets means bruising and bleeding. On Wednesday, they took a little dinky blood sample out of my arm. Today, four days later, I have a big fat bruise! At this rate, I will big one big bruise before I am done.

No the bags under my eyes didn't go away with a nap!

Otherwise, I did go out to lunch with friends today. Too hot to do much else. Forgot the damn exercises, yes, I will go do them now before I forget again.

Today was all about napping

Napping is a wonderful thing. I went to the gym briefly because it was too hot to walk outside. I came home and took more antinausea meds which resulted in a three hour nap. I could sleep some more even. I hope this isn't the dreaded chemo fatigue where I will want to sleep for the next four months - that would be hibernating! Too early for that.

PS Can anyone see the picture in my last post. Some can, some can't. I can't figure out how to fix that.

Curiousity and the cat

Well today I feel okay. A little out of it but perhaps that is just normal spaceshot and I am actually thinking about it today. I am going to try to go for a walk. The more I keep up with a regular exercise program the better so I really want to. I will take a mini walk down to the post office and dry cleaner this morning to see if I am up for more later.

Anyhow, about the cat. He apparently didn't like the band aid on the back of my hand left from the IV yesterday so he tried to pull it off with his teeth, while I was sleeping this morning! Well, maybe it wasn't the band aid, it might have been breakfast time. You would think he would get it sometimes but if its in front of him he always has to check the fun/edibility quotient. Note to self: Make sure all band aids are hidden from his view at all times.

Gee, that was fun!

I had blood drawn, saw the doctor, and then my first chemo treatment. We were there at 815 and didn't leave until 1245. They said it was longer this time as it was the first visit. The blood draw was easy - little needle, 30 seconds. The doctor then said 4 rounds AC every two weeks. Then Taxol but because of the significant long term side effects of Taxol, instead of 4 rounds every two weeks, 8 or 12 rounds every week. This means more needles and probably chemo will end in December not November. However less chance of neuropathy - tingling/loss of sensation in fingers and toes - which sometimes doesn't go away.

Apparently these two drugs cause hair loss, nausea/vomiting, and low blood counts. Therefore I get prescriptions for two antinausea drugs to start tonight as well as go back for a shot for my blood count tomorrow.

The nurses were very nice and gave us all sorts of information on what to look out for and nutritional advice, etc. I think I have the same nurse each time.

So how do I feel? Okay, I guess. Not up to running the marathon or anything but not so bad that I would spend the day in bed. They pumped me full of all kinds of drugs - antinausea as well as the AC. I did eat a little lunch and want to take a nap. Maybe go for a little walk later on. I'll see how I feel tomorrow.

Off to be a human pincushion

What fun, a 930 am apt but be there early so they can take blood. There may also be a follow up shot tomorrow! I can't wait! NOT! I HATE NEEDLES! They never can find my veins, its going to be yucky.

I will also look for OMWAHs at Lahey. I think they all meet up there in the parking garage. I did see one yesterday, pulling out in traffic, in a large new car, without looking, at 10 mph...