A good night's sleep

Today my brain appears to be functioning at a high level. Possibly because I got lots of sleep last night. I had no caffeine after 9 am and I think that was the cure. That means I can be obnoxious and perky today (really ticks off Walter if I am too perky - but sometimes its nice to aggravate your spouse.). The cat also got a good night's sleep so he is bouncing around the house this morning. This just aggravates both of us - especially when he runs up and down the stairs one of us is trying to use...

Also, I think my digestion has recovered from the wonderful looks-like-milk-tastes-like-crap-barium solutions. It was not in full agreement with me all day yesterday but nothing dire happened. Needless to say I am glad that is over. But I get barium again in a few weeks - well I can worry about that then. I need to get through my lovely colonoscopy first next Friday. They make it most (in)convenient. You are sedated so you can't drive yourself but they don't tell you the exact time to be there until the day before. I guess you are supposed to have a chauffered limo waiting for you at all times to drop everything and drive you there and back. They are very strict about this. You have to give them the name of the person coming to pick you up when you get there or they will cancel your procedure. You can't take a taxi or a bus with out an escort. And, they will keep you there until the person shows up to take you home. (Why do I have a feeling that too many other morons in the world have tried to say, 'oh, my ride is waiting out front' and drove themselves home after sedation and then had an accident so then the lawyers got involved and they wrote up this policy...) I must note that after my little caffeine error on Monday, I have to use the word other when using the word moron for a while.

Today is another busy day. First I have to make myself STOP playing on the internet and procrastinating (again) and either go for a walk or to the gym.I am not sure it is warm enough for a walk. I might need to go to the gym where it is warm. Regardless I need to motivate. Then I go to work and then to the crisper, a bit on the early side, because then I have a follow up with my doctor to see how I have been doing on hormone therapy and to ask a few million more questions. I will be out all day again. Funny, I am supposed to be a patient and taking care of myself and I never seem to be home these days.

Today is Jan 31 (as I am sure you know). My schedule gets really crazy for the entire month of February. If I think I am busy now, the next four weeks will be much worse. Mental note to self - do your utmost to retain the majority of what is left of your sanity for the next four weeks.

Make it decaf, moron!

Yes, the moron here is me. Yesterday, I had so much fun at my upper GI series that I came home, had lunch, went for a walk and treated myself to a yummy (expensive) coffee drink from Starbucks. I had successfully weaned myself off these for quite some time but decided I deserved a treat after yesterday's ordeal. I had a grande Skinny Dolce Cinnamon Latte but I forgot the magic word - DECAF! This was at about 2 pm yesterday. I never drink caffeine after lunch - my little rule. Well I was up half the night as a result. It is the only thing I can blame. I am a moron. I shall be tired and crabby today as a result. But at least I can eat.

So yesterday, I got myself to the crisper about 830 AM and was starving. They had TWO BIG boxes of donuts. I had willpower. I sniffed deeply as I walked by them (but did not inhale) and went off to my GI series. First they took x-rays (yes regular ordinary x-rays - I haven't had those in quite sometime) - the before pictures so to speak. Then they had me lie on a table that moves and tilts and drink a cup of fizzing soda and immediately drink some thick barium (looks like milk, tastes like crap) and they had me move around (roll right, no left, no back to the right) and watch it on a camera and take a series of photos (kind of like a photo shoot but they were of my insides and I think only black and white). Then I got to drink another entire glass of the lovely thin barium (also looks like milk, tastes like crap) and they took more pictures half an hour later. Then they took more pictures with a different machine to get my small intestine as well. I got quite the work out moving around on the table but otherwise, it wasn't very exciting. By the way, barium gives everyone a case of 'white lipstick'. Not only do you drink it but you wear it as well...

The big excitement is that they called yesterday to schedule my port removal! Unfortunately it isn't until the end of February and I think I even want to call back and reschedule it for the next day. But it is finally coming out! I am happy!

Otherwise, yesterday wasn't too interesting (I am using the word interesting instead of exciting - I overuse the word exciting). A friend stopped by in the afternoon. I went to my support group too. Today, I am off for a walk and then work before crisping. My last normal schedule this week. Tomorrow and Friday I run around like a crazed person all day (not that I am crazy...) so I should enjoy my relative normality while it lasts.

I'm hungry

I can't eat this morning so of course I woke up wanting coffee and food! Grrr!!! It will be hours before I can eat anything. But they will provide me with some lovely 'beverages' of bicarbonate soda and barium to take the edge off while I am enjoying my morning. The worst will be they said I can go for my crisping before my fun test and I bet they have donuts or something !!!! Will power, will power, will power. As long as I get MY locker and My dressing room I can probably survive. One good thing is that I can park in the evil little parking lot for both and not have to move my car and the section of Lahey where I have my lovely test is right next to the crisping building. I will go outside for my walk later this afternoon, after a big lunch.

Now I don't want to start any partisanship or politics here but I am quite glad I missed the majority of the state of the union address last night. I find political speeches to be rather boring usually because you really have to think afterwards - what is he really going to do? The speech was just sucking up to certain groups and making good on campaign promises (since he talked about it, he clearly means he will try to do it but don't blame the other side from blocking him from getting his legislation through). I am not just referring to Emperor George II here but basically to most politicians in general. I do vote and pay attention to politics, I just try to avoid the big speeches.

Guess what, I am procrastinating. It is 730. I have to leave at 8. I haven't taken a shower or found a book to bring with me. The cat is feeling neglected as well. I am running late again. Also, I need to figure out what to wear. It has to be an outfit that is conducive to putting it on, and then taking it off twice to put on Dr. Seymour Butz gowns at the hospital. It will be squished into a locker twice so it must be wrinkle proof. It must also be stylish enough for my support group - sometimes just looking good improves the mood. Decisions, decisions, decisions. Now I am running really late.

The third week of crisping

Well, we progress into the third week of crisping. According to the technologist, I am nearly half way. Apparently I am not as good at math as he is. He said 12 treatments down is nearly half way, but according to my math its 1/3 of the way out of the total 33-35. From his point of view, the 12 is nearly half way through the 25 full treatments. He doesn't count the additional 8-10 boost treatments that will come after. Or they could be interspersed in the regular treatments if I start to have skin issues. Apparently the boost isn't nearly as bad on your skin as they full treatments. Well, that's his version. We will see. I get so many different versions I sometimes wonder who is telling me the right thing or if I should be paying attention to what everyone says. But then again, I am merely the patient and know nothing.

This will be a very busy week for me. I have five crisping appointments, two doctor appointments, and one GI test. In addition, I want to go to the gym or for a walk daily and try to fit in some work and some job hunting and my support group and call the library and track down my missing paperwork and straighten out the wrong benefit statements from the insurance company. I think thats it. Well, other than take care of the cat. He needs to be on the list. He gets concerned I might forget about him and follows me around EVERYWHERE. Oh, and keep Walter from being crabby.

And the best part of my week is going to be on Friday afternoon when I am going for a manicure. This will be my first manicure since September. I think my fingernails have recovered enough. I also want to find out when she thinks I can have a pedicure due to the sad state of my toenails. I think that will be many months. Manicures and pedicures are very important in the world of medical patients. You might feel like crap, look like crap, have basically no hair, but have nice nails. Its just one little bitty thing we can do to feel better. I think I will need screaming bright pink nail polish as well.

Tomorrow is the Upper Gastrointestinal Series of tests. There is no real prep on my end - just no food or drink after midnight - and I have to be there at 9 am. You get to drink bicarbonate powder and then barium while standing up. Then you lie down and they have you move into different positions to coat the insides of you with the barium and then they take x-rays at different timed intervals. Apparently it takes 2 to 3 hours. It sounds like so much fun. I can't wait. Then after I have all that excitement and haven't eaten in 12 hours, I get to go to the crisper. Then I will eat something extra yummy and fattening for lunch. (Can you say 'french fries'?)

We are definitely beginning to feel the effects of the Hollywood writers strike. We are all out of Netflix. The last one is going back today, I watched it on Saturday. I hope a new one arrives today as well. Otherwise, we might have to watch the State of the Union address. (I am not sure I can stomach that. It might give me a relapse.) I do highly recommend Netflix to anyone with a medical condition requiring them to stay home a lot. Basically at your first diagnosis, sign up for Netflix and start creating a list of movies to watch. It will help your mental state, if nothing else.

To continue my Friday adventures

I did survive both the center of the OMWAH universe a/k/a the main parking garage and the evil little parking lot on Friday. I was too lazy to walk through the hospital. Also, I decided I would have a better dining experience at the food court in the mall so I had an additional excuse. I took my daily walk through the mall.

It has been quite some time since I have been there and I was glad to see there were no significant holiday decorations up. Sometimes I think its always a holiday at a mall. I window shopped and only bought one small thing for a birthday present. I did stroll through a very high end jewelry store (that shall remain nameless) that is about to enter bankruptcy proceedings and started selling off their inventory yesterday (a good thing it wasn't on sale on Friday or I might have had to buy myself something). One question is, this jewelry store, which was busy inventorying everything and the owners left the country in questionable circumstances, has a separate smaller store for watch repair in the same mall. This watch repair store had a Now Hiring sign up. Um... who wants to apply for a job at a store that is going out of business? Not me! Anyhow, that was a nice distraction from my regular grind of going to Lahey.

Yesterday I did go to the library and returned my slightly overdue library books. However, one of these books I took with me to my doctors appointments and had stuck my receipts and notes into it while I was sitting around the hospital. Unfortunately, those receipts and notes also got returned to the library. Oops! I will call them tomorrow and see if they can be retrieved!

Today, Walter had to go into work as it is really busy. He is slightly crabby because he is working too much and not getting enough downtime. He also claims that he didn't get enough sleep because someone snored too loudly - we have to teach the cat not to snore so much! Anyhow, to help alleviate the crabbiness level, we went to our favorite local diner for breakfast. Nothing like a plate of cholesterol and fat (a/k/a an omelet with blue cheese, bacon and apples, hash browns, and toast) to start your day off on a good note. I will go for a walk later as well.

How old do you want your doctor to be?

During all these medical treatments, I have definitely met my share of doctors and other medical professionals. It is now clear to me that doctors begin practicing when they are in diapers at the young age of 20 something and keep going until they just admitted to the geriatric ward. Last summer, while enjoying a 10 hour stay in the ER, there was a young doctor who didn't have a clue. He parked in patient parking, didn't know about the rooms in the hospital, couldn't find anything, and couldn't answer questions. It was August. I think he was just out of medical school. One of the nurses and I discussed the fact that he was such a baby. I think I have clothes older than him. Needless to say, I survived that ER experience and got admitted to a nice cushy room upstairs for a few days.

Now yesterday, I met with a doctor who, shall we say, is clearly at the other end of the spectrum. One of the benefits of Lahey is you can look up your doctor on their website and find out their subspecialties, where they went to medical school, do they teach any where and what they have written. You even get to see their picture. (So if you are trying to find a doctor, you can decide how old, male/female, etc.) Its kind of cool to find out more about them. Anyhow, one of the doctors yesterday graduated from medical school in 1953. That would mean he has been practicing medicine for 55 years. I think that kind of record is commendable. According to the nurses he still works full time as well. He also was the first doctor in I am not sure how long who met with me in his office and asked a million questions and wrote everything down, then examined me, and then wrote down tons more stuff, explained what he was sending me off for and was very reassuring. As doctor visits go, it was positive and very long - 45 minutes! Of course, he gave me the standard answer (what I expected) he doesn't think there is anything wrong but here are three REALLY FUN tests for you to get through in the next six weeks and then come back and see him for the results.

These tests - the easy ones start with don't eat or drink anything after midnight the day before, then you will swallow all kinds of weird stuff and then they will take different pictures of your insides and you will be here for hours doing that. The other test is a colonoscopy. According to the doctor, I should have had one at 40 so I am overdue so there is no avoiding it. What fun! Who dreamed these up anyway??

One interesting note is that Shere-Khan loves to sleep on my right shoulder - the opposite one from all this medical stuff. He lies on the arm of the chair and on my shoulder. Sometimes he kneads his paws into me as well. I have to keep his claws trimmed to prevent gouges. (You wonder how I can draw my cat into a story about a doctor visit?) Well, yesterday the doctor was examining me and said 'what are these marks on your shoulder?' I admitted they were from my cat. He said 'don't you know about cat scratch fever?' I trimmed his claws when I got home.

So yesterday I was at Lahey from 930-1115 and I left for lunch at the mall - quality Chinese food in the food court - and then returned for the afternoon. I never did get to the gym or for a walk but I really will today. Actually they fit in my crisping appointment at 930 before my first doctor appointment. I called them at 9 am and asked if they could fit me in after my 10 am apt. They said, can you be here at 930 and we will fit you before it? I said yes (standing in the kitchen in my bathrobe making breakfast.) So I ran around like a crazed person (not that I am normally crazed) and was out the door in ten minutes and at Lahey by 930 after eating my bagel while driving.

I survived the week of crisping. I do feel somewhat sunburned but apparently that is to be expected. They don't tell you at the beginning that basically you will burn and peel and possibly blister or worse. They just sort of say you will have skin issues in a vague sort of way. Maybe they don't want to scare off the patients??? I am not sure. Its not like we want to get out of this. Well, we dont want to have to be treated, but we really just didn't want to get cancer to begin with. Anyway, this week I will be the problem patient at the crisper. Three days this week, I need to ask them to squish me in a different times to coincide with other Lahey visits to avoid a second trip. I will politely be a difficult patient. I can always eat the sweets they have lying around while I wait to be fit in.

A day at Lahey clinic

I am so excited. I can't wait. I get to go to both the main building and the little radiation building, where the crisper is. I am going to see a gastrointestinal doctor to make sure everything internal is still functioning normally. This is sort of a follow up as a result of some of the side effects from chemo. But I know really what it is: another doctor to send me off for a million tests that I get to wait around for the results of and have additional stress in my life. There is no way a gastrointestinal doctor can poke your stomach and say 'okay, you are fine, its all in your head, eat more fiber' and send you on your way. I know there will be all sorts of fun tests ensuing. I am so excited I can't wait. (NOT!)

I am also going to see about seeing a psychologist to get my head shrunken (my brain certainly has diminished capacity and if my head is smaller, perhaps it won't keep rattling around so much). The stress of this has had its ups and downs and perhaps I need to talk to someone more. Those who know me know I can definitely talk plenty and the idea of seeing someone who is paid to LISTEN to me definitely has its merits.

Anyway, the way things are scheduled I will spend several quality hours at Lahey. I will probably even get to have a fine dining experience at the cafeteria. Actually the cafeteria isn't bad but of course not as good as my own cooking. I also have a book to read. In fact it is due back at the library today and is non-renewable (but whats a little overdue fine in the middle of medical issues?) But it is supposed to be a cold day outside and I wouldn't mind skipping the gym since I did go every other day this week. Now I have a good excuse. I will also get my exercise walking around Lahey because it must be 1/2 mile from the main parking garage over to the other building where crisping takes place. I could drive around but that would mean I would have to deal with both the evil little parking lot AND the giant parking garage home of the OMWAHs all in one day and frankly I am not sure I am up for that. I will ponder this and see how time goes.

That is my excitement. It has probably been a whole three weeks since I spent more than 2 hours at Lahey in one day. I was beginning to miss the place!

Okay, okay, okay, I did motivate

I wasn't lazy in the end yesterday and went to the gym like a good girl. I didn't want to go but contemplated my flabby stomach and decided I really should. I will go again this morning. I have nothing exciting to write about today. I am tired. I think this fatigue is starting to get to me. Or perhaps it is old age, but I am not that old (and certainly not as old as www.realage.com tells me I am).

At yesterday's crisping appointment I actually had to wait for them to treat someone else first. I must have been there a whole 20 minutes! I couldn't use MY locker, #7, nor could I use my backup locker #8. I had to use locker #9! Horrors! But I could use MY dressing room, #4. And I think I have this parking lot thing licked...

I was going to be good and go to an orientation this morning at yet another local cancer support organization but I decided a. I am tired, b. it would mean cutting into my day too much, c. I have too many other things to do, d. it is far away (20 minutes!), and e. I am procrastinating again. So I am going next week. I have heard good things about this place. It is the Wellness Center in Newton. They have some interesting stuff, hence the weekly orientation sessions to learn what they have. But they do have a seminar in a few weeks on cancer in the work place which I do want to go to. They probably have other stuff that I will go to but I will find out at the orientation session when I finally get my lazy butt there. So maybe I am not a procrastinator but just plain lazy. There's a thought.

Anyhow, I do need to motivate and get to the gym. Then work, and then crisping and then tonight I am on strike. I am not making dinner. We are having left overs. I decided I don't want to cook so I am not going to. We have plenty of food in the refrigerator and if we eat all the left overs tonight, tomorrow I will go and get us some fresh vegetables and things to make for the next week. Is being on strike, laziness??? Hmmm... I'm not sure. Maybe tomorrow will be more exciting.

The unwanted visitor

Yesterday morning I went into my office here at home and there was an unwanted visitor! This is the visitor you really don't want to see on your home computer: The blue screen of death. It gave me a long and complicated message which basically said your computer is doomed, it did a full memory dump, and needs to be restarted. (Actually I am not sure what it all said because there was no way to scroll up and read the entire message that must have been quite long.) I have no idea what happened (hence the problem of not having an IT department waiting nearby to solve computer disasters). So I rebooted and watched the computer give me another message: Windows has successfully recovered from a serious error. Well, I am not sure I believe that yet but it seems to be working okay for the most part but didn't want to get me my email yesterday. Well actually, it did get me my email. It delivered the same messages four times, just to make sure I had read them. Now I just work with my fingers crossed that the blue screen of death will not return and cause additional errors. It will be a distraction from some of the other issues going on in my life, not that I need more stress or anything.

Here's another thing I am not sure is wanted: single serve SPAM. Yes, the lunch meat that must have a cult following somewhere is now available in single serve portions. I learned that this weekend, in fact you can order them online as well. I do not plan on going out and buying any as I have tried SPAM in my life and that was plenty, thank you. There must be a demand somewhere if they are now making individual portions. Perhaps this is like liver and onions which is one of the most popular restaurant menu items in the US. People who like liver and onions are rare and usually can't get their family members to make it for them or have the smell of it in their house so these fans must eat it in restaurants, hence its popularity. I do know I will not be eating SPAM or liver and onions anytime soon. (If you refer to the lunch meat by product, you are supposed to write it in all caps. The unwanted emails are lower case. I believe there was once a lawsuit on this topic... Go to www.hormel.com if you really care to learn more. I can believe you can even download the SPAM cookbook too.)

Another not-so-sure-we-want-it item: Visa gift cards. These are the most difficult things in the world to deal with. If you read the card, they clearly say redeemable anywhere Visa debit cards are accepted. I recently participated in a survey and was then entered in a drawing for a $100 Visa gift card, which I actually won. We tried to use the damn thing about five different times and couldn't get it to work. We learned the secret the other day from the cashier at Barnes & Noble, you have to run it through as a charge not a debit card (even though it says debit on it) and you should know the remaining balance on the card because some cash register systems need to have that piece of information to conduct the transaction. This all makes it very complicated and stressful. More stress is something I don't need at this point.

Speaking of stress, today I am going to be lazy and not go to the gym. I have been to the gym or walked every day since my last surgery which was December 18 and I just don't want to go today. I am tired, it is cold out, the gym is boring, I have lots of stuff to do, I feel like I might be getting the sniffles (and saw two people yesterday with colds - one of whom was my doctor), and I just don't want to go. So there, I am not going. Instead, I will stay inside where it is warm and do some work and job hunt before going to work and crisping. Tomorrow I will return to my normal routine and go to the gym.

The crisper

So what exactly is the crisper. Well its really a linear accelerator (I can't explain how it works because I took 'Physics for Poets' in college but it makes radiation). Anyhow, I lie on a table with my head towards the giant machine with my left arm over my head. It is a really big machine. If you figure the table in the picture is probably 6' long, it gives you an idea of how big it is. Yes that is a remote control on the table as well. It is used to adjust the settings. There is a computer screen hanging from the ceiling across the room where they can take their readings. It is also has computers to run it in a separate room. The two giant arms rotate around the table. First one is positioned at an angle above and to the right of me and then it is rotated 180 degrees so it is positioned down and to the left of me. They crisp me from both angles. The bigger of the two arms has glass over the side facing me. I just lie there and stare up at the ceiling.

Well I did at first. They actually have a giant (probably 8' wide by 4' tall) panoramic, backlit photograph of a tropical scene on the ceiling so you have something interesting to look at (and plan your next vacation). So my first few visits, I just lay still and looked at the ceiling and thought about places to vacation. It is important not to move once they position you so you don't crisp the wrong parts of your body. Anyhow I also can see the glass on the underside of the giant arm on top. As I am lying there waiting oh-so-patiently, I realize that in the glass I can see a big, ghostly white blob. Do you know what it is? MY FLABBY STOMACH!!! Now is the time to get flat abs! How appalling! I can tell when I am positioned correctly because I can see my stomach. So every day I can lie there and look at my flabby stomach!!! At least I am lying still so it isn't jiggling or anything! Needless to say, I think it is time to cut out the ice cream and chocolate and move on to sit ups.

What is 'Physics for Poets' you ask? It was a great class for liberal arts majors with distribution requirements in college. You had to know which formula to use and which numbers to plug in but you didn't have to calculate the formula and end up with the right answer. You realize this was back in the dark ages before calculators and computers in the classroom and all us liberal arts types would have been there for days doing long division. It also means is that I know radiation involves lots of numbers to the something power and fractions and variables but I can't calculate the math but could probably translate it into a foreign language for you.

Yesterday I also met with the nurse. This is the third nurse I have met with - every week a different one. I keep getting different information. This nurse told me that since I have dark eyes I will probably do fine with the radiation exposure to my skin. What do dark eyes have to do with ability to withstand radiation on your skin? I am not sure I understand the correlation here. Also, she told me that the radiation kills off all the cells in the area being treated. Good cells will regrow in about six hours. Bad (cancer) cells don't regrow (or at least that is the premise here). As your body works really hard to regrow all these cells, you get tired. She said it is normal to start feeling tired and sleeping a lot. (Last week they told me fatigue didn't happen.) I slept for 11 hours Sunday night. They are successful in confusing me.

So yesterday in a fit of organization we actually purchased boxed Christmas cards to send out next year. As we were driving home, we actually discussed two important issues relating to them: 1. How will we remember we already bought cards so we don't go out and buy more? 2. Where should we store them so we can find them? It doesn't matter if we were organized and we both actually like the cards for once if we don't remember and can't find them. Or worse, find them after we bought new ones.

Today I am off to work, crisping, support group, and volunteer meeting after a quick trip to the gym to work on my flabby stomach!

Getting ready for a second full week of crisping

I definitely found my skin was more tender (I think that is the best word to describe it) after five consecutive days of crisping. It has now had two days to recover so is less tender. I assume that once again we are in the area of cumulative side effects so it will be interesting to see how crisp I get by the end of the week. Apparently day 15 is the key day for crisping as that is when the real skin issues begin. I am up to number 7 and will be at 12 by the end of the week so crispy effects may start.

Today I also get to see the nurse after crisping. Its a little silly, you see a nurse one day each week (Monday) and the doctor another day (Tuesday). Wouldn't it make more sense to split them up so they are spread out more over the week? Or again, I am merely a patient with no medical training so I am not one to know anything about this sort of thing.

We have another frosty day outside today. Its currently 14.5 degrees (on our digital thermometer) which means it is too cold to walk outside so I am off to the gym. Nothing else exciting. Nothing interesting. I did update my age on realage.com and found out I should start doing more with weights. Perhaps that will be my excitement for the day....

Efforts to improve my vocabulary

I decided my blog has become very redundant. I need to try to write it without using the following words: ice cream, bacon, cat, boring, and exciting. If I can do that perhaps I can even move on to more topics.

I will just say that there is no longer any residue from the ice cream fairy in our freezer. We are down to the sheep's milk ice cream. Perhaps it is time for chocolate sauce. Bacon of the month isn't due for another week and a half but we already are awaiting it. Yesterday we suffered greatly with Belgian waffles but no bacon.

The cat is very much a psycho kitty today where he is running around in a crazed manner. We think this is due to the fact that he had a good night's sleep in the middle of the bed again. (He also persists in his finely honed skill of walking around rooms on the furniture and not on the floor.)

In an effort to be less boring and more exciting, yesterday we actually attempted to get some culture. We went to a local museum and saw a demonstration of Viking military battles and a discussion of the life of Vikings. (Talk about people with bad press. They raided all the monasteries in Europe and the only people who were literate enough to write about them were the monks in the monasteries. Hence you can imagine they only wrote the bad stuff.) Now we are more cultured, less boring, and more exciting.

Moving on I am also attempting to ensure we eat balanced meals and use up the food in the refrigerator each week before it goes bad. I have started planning menus to an extent. Last night I made chicken sate with pea pods. Friday night we had curried squash and chicken. Today I am making pork noodle soup during the football game. That will also be my lunch for the week.

Today's fun event is to meet some friends for brunch at a local diner. It started with one friend who said, do you want to go to the diner Sunday. Now there will be four of us. I need to go to the gym first to make room for my omelette. They have at least 30 omelettes on the menu there. Originally I wanted to try every one and work my way down the list. However, me being the creature of habit, I am stuck on the same three or four that I alternate between... Consistency, that's me.

I did want to get out side for a walk this morning but it is clearly too cold so I do need to go to the gym instead. I am wimpy but it is only 21 degrees. Unfortunately, it is the warmest it will be for the next few days as well.

No crisping yesterday and today but it does return tomorrow. I am going to drag Walter with me so we can run some errands after it. He hasn't been to Lahey for over a month it is time for another visit. He can also enjoy the experience of the parking lot with me!

More mental notes...

I did remember a few more yesterday. Lets see if I can remember them...

4. Write things down so you don't forget. That might help. Make lists in fact.
5. ...I'm still thinking...

So while I am thinking, perhaps it is time for a hair update. First of all it is returning. It is very short still and will not be publicly unveiled for quite some time. The color is wrong (take a guess!), it is uncooperative and goes in a thousand different directions and is to short to brush. On a more positive note, my eye brows and eye lashes are returning as well. Did you know when your eye lashes grow back sometimes they point in the wrong direction and you feel like you are being poked in the eye for about a week? Ouch! Needless to say this is going to be a long process.

Also, my fingernails are beginning to look more normal. Perhaps I can get a manicure in the next month. (A manicure is not about nail polish, it is about getting your cuticles trimmed, etc. Nail polish just makes you look good and I do need that!) Toe nails are a different story. It looks like the second big toe nail is about to go. Can I live for a year without a pedicure? Probably not. (Again, its not about the polish, its about cuticles and callous removal.) I will ask the manicurist how long I should wait without big toe nails for a pedicure to get a more professional opinion.

(I'm still thinking of number 5...)

Yesterday's crisping again included a trainee so it took about 20 minutes. Apparently when you get a BS as a radiation technologist, you get to practice on real people as a college senior. No wonder they look so young! (I have clothing older than they are!) Trainees take a long time to get you situated and then the regular techs have to make sure you are all lined up correctly so they don't crisp the wrong things - like your lungs or heart (nothing major!). They had foil wrapped chocolates. One thing I don't understand is how they have new candy every day! Does it all get eaten? You would think sometimes they would have some left over the next day. I am there fairly late in the day so perhaps it is all eaten and they are on to a new supply by the time I get there. (But I still am being strong and resisting it.)

I am also supposed to get x-rayed every 5-7 visits to make sure everything is going correctly. I asked about this yesterday and they told me they had x-rayed me on Thursday and I didn't even know it! I am not sure what they can see in an x-ray that would effect what they are doing but then I didn't go to medical school or to be a radiation technologist so how would I know. I am merely the not-so-patient patient.

I give up on trying to remember number 5. It will come to me eventually and perhaps I will heed note number 4 above so I can remember it.

PS I did beat the damn parking lot again.

Mental notes to self

I still can't remember stuff even though my brain is returning. Maybe I couldn't remember stuff before and was in denial? I don't know. I am a space shot. There I said it. Air headed, space shot. Anyhow, here are the latest mental notes to self.

1. If you don't make sure your water bottle is sealed it WILL leak all over. This includes into your purse, on to the car seat, and into your pocket while walking. Seal up the water bottle. (Then go dry out the contents of purse.)
2. Your cell phone will not work if you don't charge it more than once a month. It has a battery that needs to be recharged at least weekly. Plug it in. (Also, see note number 1 - keep it dry.)
3. You won't lose weight if you eat chocolate and ice cream daily. Leave the chocolate for Walter and eat ice cream weekly.
   
4. I cant remember the next ones, I know there are more....

Also, the latest in the war of man (me) vs. machine (parking lot), I have heard from a reliable source (my mother) that I am not the only one who has difficulty with the machine. It has been an issue for some time with others as well. This further substantiates the fact that it is the machine and not me and I am not losing my mind. (Unless you wish to argue that my mind was lost a long time ago which is an entirely different discussion.)

So yesterday's crisping went fine. Instead of two boxes of chocolates and gingerbread, they had a jar of mini candy bars and chocolate cake with frosting. I had none. I will be strong and resist these. Apparently its the patients who bring in treats all the time. Maybe when I am done, I will bring them flowers instead of edibles.

Also, I timed my entire trip. It took 17 minutes from when I left my car, walked inside, got my parking validated, got a johnnie, got changed (dressing room 4), locked my clothes up (in locker 7), waited a few minutes, got crisped, retrieved my clothing, got changed, stopped in the ladies room, and walked back out to my car. That was actually a long trip. They made me wait a minute or two before going into the giant machine room and they had a trainee who took a bit longer than the regular techs to get me positioned correctly. I think most days it actually takes about 12-15 minutes for the entire process. Its just that I have to go EVERY day.

Now if you are totally bored (and a cat or dog owner), here are websites for you. www.catage.com and www.dogage.com. You can learn your pet's real age in people years. There is a website for people called www.realage.com where you go and enter all kinds of information about yourself and it tells you how old you are really and what you can do to live longer. (By the way a cancer diagnosis makes it tell you that you are REALLY old.) However, the other day, I learned that Shere-Khan is 46.1 years old in people (or biologic) years and he really doesn't need much. Actually he is about 11 years old...

I figured it out

Its not me, its the stupid machine (at the parking lot that is). Yesterday's adventure: I left put the validated (therefore free) parking ticket in the machine. It said I owed $2... I almost just backed up (no big line behind me yet) and went back in for them to revalidate it and almost pushed the Press for Assistance button but I decided I will retry the ticket. It worked and opened the gate. This proves it. Its not me. Its not my mind. Its the damn machine. I can beat it! That was one good thing.

Well here's a one week update on my crisping. First of all, while they are very nice and now know me by name, they have entirely too many sweets there. On the front desk yesterday were not one but two open boxes of chocolates next to the little fish tank (I don't think the fish were having any). Then there was home made gingerbread on the coffee table. I said something about all the sweets and volunteer said 'but its only gingerbread'. Hmmm... I did not succumb. We have plenty of chocolate and ice cream at home. About my skin. Well, it feels a little sore. It is not red yet. I am 'hydrating' my skin regularly (probably 4 times a day) and so far its okay. Apparently week 3 is the time skin issues will kick in. I will post again. Yesterday also I couldn't use locker 7 (see update from a few days ago). I had to use locker 8. How stressful. There was also a man waiting around the dressing area while a woman was in the men's room with the door propped open. Quite odd to say the least.

Last night the big mystery was why did I have circles under my eyes? I was brushing my teeth before going to bed and noticed big circles under my eyes. I asked Walter and he considered them little circles (I hate to think what the big circles I used to get looked like) and asked me if I did too much yesterday. (Now would I do that?) I didn't do that much yesterday. The daily trips to the crisper require me to finish up work or whatever else I am doing by 3pm so I can zip over there and then I usually come home. That definitely curtails my chances of 'overdoing it'.

I did go to the gym yesterday. (My teeth were fine at the dentist too.) Today I am going for a walk with a friend on the (plowed) bike path before work and crisping. Then I have to go to the farm stand to get fruit and vegetables. We have none. We are done to some old onions, moldy garlic (how old does garlic have to be before it gets moldy?), one tangerine and one apple. 5-9 servings of vegetables and fruits every day. I am trying. So far just a glass of juice (1 serving) and if I eat the tangerine that will be two servings so far. Then salad for dinner - maybe 2 more - plus some cooked vegetables - that would put me up to 6... It is difficult to get to 9. I guess its just not going to happen. Gee my life is SSSSOOOOO exciting! That's my daily update on my boring life.

I need to motivate

If I get off my flabby butt I have time to go to the gym before the dentist this morning. Yes my teeth get cleaned today - for the first time since chemo. This could be interesting as chemo does all sorts of nasty things to ones body - we'll have to see if the dentist finds anything exciting. I went just before chemo way back in July but usually go every three months - aren't I one of the lucky ones? I should get motivated. I had ice cream AND chocolates after dinner last night. I really hope we finish all the Christmas chocolates soon. It took so long to get rid of the Halloween candy and and then all the little chocolate santas arrived! Combined with the ice cream fairy, ice cream of the month, and bacon of the month, I may be fighting a flabby battle for a long time.

The real problem with going to the gym is that it is a tropical 18 degrees out this morning. Just a tad chilly. But if I don't go now, will I go after radiation??? Probably not. By then my gym bag will have sat in my car all day and my clothes will be too cold to put on. How's that for a really lame-o excuse for not working out?

Yesterday I saw the doctor after radiation. (Yes, I beat the parking lot again!!! Yippee for me!) She said everything is going fine so far. But she did look at my incision from my surgery last month and said 'yes there is a little stitch hanging out'. Apparently it is supposed to be an internal one that will dissolve. But it is sticking out so eventually it will dissolve and fall off. If you think about it, it is kind of yucky. But I shall be brave and daring again and just pretend its not there. That's my really positive way of dealing with yucky things - just ignore them and they go away. Well it sometimes works - like maybe with this stitch. But real problems don't work that way - you have to get your car fixed when it makes a weird noise, you really should go to the doctor when you get weird pains or are sick (and then they send you for all kinds of nasty tests that lead to months and months of treatment... wait I am getting off track....) You get the point. I am going to the gym.

They're mine, mine, mine, mine, mine!!!

My two year old side is apparently reappearing. Also, as man as a species is a creature of habit, I am being possessive. (Now you are wondering, what the heck is she talking about?) When I go to radiation, there is a little changing area with dressing rooms. I like dressing room 4 and locker 7. Room 4 is around the corner from the first part where people can see your feet as you change. It is much more private (I was going to write privater and realized that was not a real word - perhaps I need more coffee this morning) and in the middle. The one on the left is behind the soiled linens basket and the one on the right is next to the men's room door. (Yes, a co-ed dressing area - kind of weird but okay because there so seldom is anyone else there and there are separate dressing rooms.) I like dressing room number 4. I use it every day. (It is mine!) Right across from it is locker number 7. I like using the locker that is across from the dressing room - sometimes I take two trips to hang up my clothes. (Mine, mine, mine!) However the big concern is what if I get there some day and THEY ARE TAKEN BY SOMEONE ELSE??? Will this ruin my day? Do I wait for the dressing room to be free or do I use one of the other less desirable ones - visible feet, next to the men's room, or behind the linen basket? What a dilemma! I think I shall have to cross that bridge when I come to it and hope it have too great a negative effect.

So yesterday I struggled through the snow (neither rain, nor snow, nor sleet, nor hail... - no wait that's the post office's motto but I might borrow it for the duration of radiation) and got to Lahey. It was very empty. I was told most patients canceled due to our little itty, bitty, vastly overinflated by the media snow storm. (We got about 6" and it stopped by noon. The media said up to 18" and continue through evening. They were wrong.) I was glad to see that for once the sweets table was empty. Every time I go there are donuts or cake or cookies or something sitting on the table that I politely ignore. There is however a coffee maker that usually has coffee in it. That does have some appeal.

After treatment I also met with the nurse. Every Monday I will meet with a nurse. I think everyone I meet with gives me another version of what to do and what is going to happen. First the techs said 'no you won't have fatigue'. Then the nurse said 'keep your skin hydrated', 'don't take vitamins, they might interfere with the radiation', and 'your skin should be fine if you use this special (and really expensive) cream'. Then the techs said 'get some aloe and vitamin E oil for your skin'. Then a different nurse said 'yes you will have skin issues at some point - probably about 2 weeks', 'don't bother with the aloe (after I already bought aloe and vitamin E oil), get some vitamin E capsules and poke a hole in them and use them on your incision only', and 'yes you can take vitamins but not large doses of antioxidants (C and E)'. I think today I meet with the doctor. I will see what she says. I originally thought I would meet with the doctor on Wednesdays but apparently it is possible I will meet with her on Tuesdays. I guess I will find out. More patient confusion.

I did beat the parking lot yesterday!!! I get the gold star for the day! I mentioned it to the nurse. She said if you are having problems with your ticket being read by the machine in the lot, try it in the pay machine first before you go out and it should say $0 due and spit the ticket back out. I tried that. It worked. Then I tried it at the lot exit and it worked. That will be my back up plan from now on. I also tried keeping it in my pocket instead of my purse yesterday. I think we are up to 2-Caroline, 1-parking lot. Only 3 treatments down. This is going to ddddrrraaaggg aaa lllooonnnggg tttiiimmmeee.

Today, I am going to the gym, to work, to radiation, to support group, and then home. I also have to do more volunteer work. Just a few things. Yesterday I did get off my lazy butt and go to the gym as well. I am trying to recover from eating continuously for a month over the holidays. Ice cream and bacon consumption didn't really help either. A positive side effect of Tamoxifen - yes there are positive side effects - is it seems to have completely killed my appetite. The scale once again is slowly going in the right direction. One tiny little bright light in my otherwise boring life.

We have the smartest cat in the world!

Yesterday, the cat totally amazed us with the extent of his intellect. First he spent the morning studying very, very hard. (Note the presence of the long lost pink pillow filled with catnip.) Then Walter upgraded the cat door and he actually walked through it.

About 2 years ago, Walter put a cat door (well actually a small dog door as the cat is too large for a little bitty cat door) on the basement door so the cat could go up and down the stairs to his litter box with out needing to leave the door ajar. He could not figure it out. He never learned to push the flap with his head - maybe it was too heavy or something. Anyhow, we had to either leave the door ajar (which was the whole reason to install the cat door in the first place) or hold it up with a piece of string. He never got it.

Well, Walter removed the originally heavy flap (accompanied by lots of swearing - I think things go better when you swear as you work or something) and replaced it with a thin, soft piece of flexible foam rubber that is used to make crafts and things. I then resorted to the kitty treat bribes and, voila, the cat figured it out and walked right through it. As his name really is Shere-I-am-a-loser-and-will-do-anything-for-kitty-treats-Khan I am not too surprised and he did have two years to learn about this. Anyhow, he gets a gold star for the day and we will call him the smartest cat in the world for now.

I bet you are thinking, 'she leads such an exciting life'. I know I really don't. I am actually quite boring. Yesterday, I also went for a walk, returned library books, and braved the grocery store. I found out no OMWAHs went to Lahey yesterday. They were at the grocery store, parking badly, blocking traffic, and then using their highly refined driving skills in the store with shopping carts. It was somewhat eventful and I forgot to buy toothpaste. (Its not an issue yet as I have a little tiny bit left but means I will have to go to the store again in the next few days. Especially since I have a dentist appointment this week.)

Today I don't know what I am doing. There is a little bitty snow storm going on - somewhere between 5-14" expected depending on the TV channel you watch. Hence the chaos at the grocery yesterday. I can't really see out the window as the screen is full of snow but what I can see is that Mass Ave, the main road through town, is snow covered and has no traffic. Walter has opted not to go to work today as it is supposed to be bad most of the day. I don't know if I will get to my crisping appointment today. I will call them later and see if they are even open. That would be most upsetting to drive myself there in a snowstorm and find out they weren't even there! However I don't know what they would do if I miss an appointment. I hope they don't charge me or something for late cancellation. They must have some kind of snow policy for these daily appointments. Something new to learn today.

Otherwise, I will keep myself busy by doing the volunteer work I said I would do over the weekend, possibly even clean the bathroom, and supervise Walter's snow shoveling. (Now that would be the height of excitement!)

Seriously, I am not supposed to shovel snow or otherwise strenuously exert my left arm. No lie. After surgery last summer where they took out all those lymph nodes, they said, for the rest of my life, I need to be careful of my left arm and not over exert it, strain it, watch out for any injuries (cuts or burns) to the hand or arm, and report any issues with it to the doctor. I also can't have any blood pressures, blood tests, or needle sticks to it ever. (This is why I have my lovely port.) Its the whole lymphedema thing where the lymph system is compromised due to surgery and I can end up with permanent, uncurable swelling to my arm if I am not careful and it can occur anytime after surgery but usually happens within the first three years. I can do things like go to the gym and work out with light weights and work up slowly. But, darn, I can't shovel snow, especially this nasty wet heavy stuff that is falling today. Darn. I am so upset. (Not!) I will supervise the snow shoveling.

Red Alert!

Red Alert! I feel my brain returning. It has been many months but I do feel my brain returning. Not that I am about to let go of my chemo brain excuse. I feel that will be valid for many years. However, I feel my brain capabilities are returning. I no longer have the inability to remember what I did 30 seconds ago. I feel I can actually remember what I did ten minutes ago. See what a vast improvement!

In addition, I actually feel like a human being and don't get the really, really tired feeling as often any more. For months, I would get that really crappy (like when you just had the flu and feel awful even though you no longer have a temperature and really just want to crawl into a hole and die) feeling every day even if I didn't do that much. Now I don't get the really crappy feeling, I just feel tired. This is great progress. This will last for a few weeks - maybe three until radiation fatigue hits. Then I can go back to being really, really tired but perhaps the really crappy feeling wont return. Unfortunately, yesterday I went for a walk, visited my mother, went out to lunch with friends, and did a little shopping (but didn't buy anything - does it count as shopping if you don't buy anything or is it just browsing?) and came home and ended up lying in bed for an hour watching lame TV. The worst thing about watching lame TV is when you find that all the channels you like are showing reruns that you have already seen too many times or just didn't like the first time around. I ended up watching the snow board boardocross championships. It was actually pretty cool. Not as good as giant slalom or Super G races but better than I expected.

Now that my brain is returning I am going to run out of excuses for watching lame TV. A real test of my brain's return is we had a lot of things to get done around the house yesterday so we made a list. A really big list. We lost the list. We are doomed. We tried to recreate it. It is definitely missing some items. Luckily it looks like we will also be home tomorrow with 8-12", 10-14", or 12 - 16" of snow expected overnight (depending on which TV channel you are watching) so we have one more day to remember what we meant to do and get it done. It does look like a snow day with the snow starting around 3 am and continuing into mid afternoon.

This overhyped weather forecast means that everyone in metro Boston today is going to the grocery store. I would like to go get some butter because we are really almost out (and I forgot to buy it yesterday - see my brain is returning but is not yet perfect) and in fact might have to eat dry toast tomorrow if we don't stop but if the grocery store parking lot looks too crazy, I am not going in. It will be a like a feeding frenzy. Everyone running around with carts piled high of bread, milk, toilet paper, soup, and frozen pizza because it will be too snowy to go out tomorrow and what happens if they declare a state of emergency and you can't get out for days and have to cook over the fire place when the power goes out because its going to be a big noreaster that the media is blowing out of proportion and will snow lots and lots and stay tuned because they are going to up their forecasts of snow amounts as the storm gets closer. I can take a pass on that as I really only need butter and we can eat dry toast if needed. Besides kitty has enough treats to last him a few months.

If the weather is really bad, I won't make it to my crisping appointment. This means I will start stretching into March. I knew this would happen. The never ending appointments. Well to relieve this potential stress (even though I will get to avoid the %^*&^*(@#$$% parking lot), we are going out for our morning death march. Walter doesn't believe me that the bike path, which has been plowed all winter, is perfectly clear and he can go running. Yesterday we hoped the bike path would be clear to Lexington due to last week's thaw. It wasn't. It was definitely a skating rink in places. We saw two lucky gentlemen who were on their road bikes with nice skinny tires who dismounted at the beginning of the ice and proved that bike shoes and ice just don't mix. This morning I will prove Walter wrong and then have bacon (of the month) for breakfast.

Not that I should be vacuuming

But how many times do you have to vacuum your house to get rid of all the damn needles from your Christmas tree? The tree went out Wednesday night in a big Pigpen cloud of needles and I have vacuumed three times already and now am finding needles all over the house. It should be said I was given the year off of house work by the doctors at my first surgery but I am having problems following those orders. I will just keep vacuuming and getting aggravated. At least I am not trying to keep up with the cat hair - that would be impossible.

Yesterday was treatment number 2 of 30 something. Maybe I'll just keep track by saying 6 weeks to go. The target end dates are somewhere between February 25-27. Which just sounds so very far away. I could say I'll be done by March but that sounds even farther but may be more realistic. If the weather or other issues interfere with daily treatments, it could be stretched out. Sometimes patients having severe skin issues are given a few days break so their skin can recover more. The eternally lasting treatments. An analogy from a friend is its like being stuck on the Bourne Bridge (to Cape Cod) on a Friday in July where you can see the ocean but just can't quite get there. (Still feeling stuck in my trip cross country as well.) By the way, I just feel as if I have a very minor sun burn so far but the tech's told me that its all in my head and I won't feel it or see any skin reaction until about 3 weeks. (Now I just want to have some kind of reaction to prove them wrong.)

Yesterday, I clearly lost the parking lot battle. The stupid machine couldn't read my ticket - UNABLE TO READ TICKET - and the Press for Assistance button garnered no response. I created quite a traffic jam and the lady in the car behind me came up and tried to help me by showing me the correct way to insert my ticket, magnetic strip up and to the right, and asking if it was paid. Finally I convinced her that the most assistance she could give would be to back up (which she didn't quite understand) so I could back up and go inside and ask them to call parking lot security for assistance. Quite stressful if I do say so and MOST aggravating. I can't wait to go back on Monday! Why me? Why does this keep happening to me???

Now Monday we are due for a snow storm. This is the winter I can't shovel snow. I keep trying to convince Walter this is true but somehow he doubts me. (Probably because of the vacuuming thing.) It could mean I get snow bound in our own house if I can't shovel to get out. Now that would be stuck inside with the cat, computer, refrigerator, and TV for 8 hours. Is that really a bad thing.

Today's yucky thing. I woke up and found a toenail had fallen off. Icky, icky, icky. I did some research. It takes 12 - 18 months for your toenail to grow back!!!! Its about 1/3 of the way there so maybe 8-12 months! Yuck! I have to figure out a way to get a pedicure and skip that toe in the meantime. In the meantime it just looks very icky. I will keep shoes and socks on for now so as not to gross anyone out. Once again, I express my concern about the sensibilities of my friends and family. Now I have to go get motivated for a walk. I have convinced Walter it is very important that he go with me for once. I am just waiting for the temperature to rise a little bit. He thinks I am procrastinating again.

Grrr!!!

Stupid @#$#@$&**(&%*&@*% parking lot! Grr, grr, grr!

Two days in a row

I beat the damn lot. I got in and out without trouble. However there was a security guard hovering near by. I wonder if they recognize me already... Hmmm... Must I go into stealth mode? (Speaking of stealth mode, I observed another OMWAH driving maneuver - the stealth stop sign. If driving 5 mph, there is no need to stop for a stop sign as you are already under the radar and in stealth mode. Just keep going and hold your speed. Everyone will stop for you... Especially in the Lahey parking lot! I am not sure I would try this elsewhere.) One advantage to the nasty little parking lot (that I am currently beating) is that I can see the entire thing when I pull in and observe any potential OMWAHs and stay far away from them. It is very small - 20 spaces? - with only one entrance (hence my problems) but is an area of frequent OMWAH sightings.

I am getting smarter every day. I learned two things yesterday. First, those lovely Dr. Seymour Butz gowns (a/k/a johnnies) come in multiple sizes and I am a medium. Upon arrival at radiation, you check in and then go to the cupboard and get your own johnnie. Everywhere else I have been the nurse always hands one to me. Here I can select my own. Wednesday I contemplated the size range. I really don't think I am an XL. Being pessimistic, I tried the large. While it did cover me and not leave anything 'exposed' (not that I have much modesty left these days - there are some BC patients who believe they could pay their medical bills if they charged $1 per peek through the duration of their treatment) but it was slightly oversized. Yesterday I decided to try the medium and thought it fit quite nicely. Not gaping but not too tight. If you think about it, the nurses must go through a lot of training to eye ball a patient and say 'they must be a medium/large/extra-large'. I think I have almost always been given a johnnie that fits. They must be highly trained.

The other thing I learned yesterday is the difference between radiation therapy and x-rays. Well first of all the x-rays they take for say a broken bone, at the main diagnostic radiology department, are very different than the x-rays taken in the radiation therapy department. I am not sure why but was told it was highly technical. (Not being highly technical, I decided I can live with that kind of description and be happy and feel informed.) However, in the radiation therapy department, they use the same machines to take x-rays and deliver radiation therapy. The difference there is the x-rays are lower Kv than the radiation therapy and are a shorter period of time. I feel smarter already.

The cat also feels smarter. Yesterday morning he was assisting me in matching and rolling pairs of socks by playing sock-soccer after he had warmed up with my spools of thread. This immediately evolved into sock-soccer-basketball when he gave a pair of socks a whack and they flew up in the air and landed in the wastebasket. He gave me one of those looks like 'what do I do now?' I said to him 'I bet you couldn't do that again if you tried.' (Yes, I talk to my cat. Doesn't everyone talk to their pets?) His response was to go look for something to eat downstairs.

I survived the parking lot

Yesterday's score: Caroline - 1, Parking lot - 0. First I pulled in and had to reach over the machine to get my ticket. Because of the angle of the entrance and the fact I come in the back way, I always end up too far away and have to put the brake on and open the door of my car to reach my ticket. Well, yesterday I managed to be close enough not to have to step out of my car as well! (However in reaching over, I managed to floor the accelerator on my car.... Oops!) However this is step one in beating the parking lot - just getting into the damn lot. Then when I left, I specifically asked is my ticket validated so I don't have to pay and was told yes. I tried to leave and the stupid machine says 'unable to read ticket' which is what happened to me last time. Darn it! I did try again and it worked. I escaped!! Yippee! Now I just have to go back 33 (or 34 or 35) more times....

Actually yesterday I was confused. (Or maybe perhaps I was confused by the staff at the radiation department.) It was not my first radiation treatment. It was just x-rays to make sure everything is lined up correctly - my (tattoo) dots are in order so to speak. (In addition to a radiation blast every day, I get x-rayed every week, see the nurse once a week and see the doctor once a week. I am confused about x-rays vs. radiation. Maybe I'll ask today. Aren't they basically the same thing?) Today, I finally have my first treatment. Now I do know that I have to be there at 330 pm every day. But I still don't know how many. They will give me 25 treatments (until February 13) initially and then at the end decide whether it is 8, 9 or 10 (until Feb 25, 26, or 27 not that I am keeping track or anything) for the boost - when they aim at the area the tumor was in originally. That's it. Leave me hanging. I don't mind! Just a little more something to stress about. According to Walter, I always have something to stress about and this is just one more thing.

Now that I am finally beginning this my life can get in to a new rut. Get up and go for a walk or the gym. Go to work for a few hours. Rush over to Lahey to get there on time. Come home and make dinner. (Perhaps if I schedule making dinner every day we will get some extra fancy food. Tonight is flank steak with salad and sauteed mushrooms and oven roasted carrots and potatoes. It will be much better than last night where Walter had a meeting and I had a conference call so I had low fat Cheez-its, a piece of cheese, and ice cream for dinner.) Well that will be my schedule except Fridays and school holidays when work isn't open, Tuesdays when I go to my support group, or any other day when I have a doctors appointment or something. So maybe its sort of a rut. How about a 'rut for most days but not all'. Its better than boring.

Today's plan (surprise, surprise, surprise) is to go for a walk, go to work, and go to radiation. But you knew that already. Maybe I'll start glowing later today. I will report.

Now the cat is already being irritating today. He is disarmed - we trimmed his claws last night - but he is a pain in the neck. I tried to sew a button on a sweater this morning so I could wear it. Evidently I was wrong. It was not a spool of thread but a cat toy. Grrr!

Brave and daring

Today I will be brave and daring and deal with the stupid little parking lot at Lahey. I have thought a great deal about it. Why should it get the better of me? I can handle the stupid little parking lot. I can do it. Go team, rah! Also, with a smaller parking lot, there should be fewer OMWAHs to negotiate. And, I have to go back another 30 something times so I have to figure it out.

Yesterday, I was also brave and stuck my spoon in the sheep's milk ice cream. (Why is my blog all about food, and my cat? Because that is my life these days.) Now while I am not sure I would rush out and buy it by the gallon, it is entirely edible and will benefit but a little dusting of cocoa powder or chocolate sauce. I am sure it will disappear from the freezer at a relatively speedy rate.

Now about the cat, he is fine these days. He is a pain in the neck. He is very clingy. We went away for three days and he thinks we abandoned him for life. He also needs his claws trimmed as in his need to be clingy, he can leave marks, actually little gouges.

Also, yesterday I was really brave and started hormone therapy. Yep, I took my first pill. It is daily for 'only' five years, well two years and then I will switch to an AI. Today I already remembered to take the second one in fact. A gold star for that! So being a smart person I decided to research the side effects, etc. The big one to look out for is blood clots but also sudden numbness or weakness in one side of the body; pain or swelling in legs; fever, chills, body aches; pale skin, easy bruising, or bleeding; new breast lumps (isn't the whole reason for taking it to prevent these?), or nausea (my favorite), stomach pain, loss of appetite (that is one I will take), etc. In addition there are less the common side effects of hot flashes; bone, joint or tumor pain; swelling in hands or feet; depressed mood, weakness; weight loss (I'll take it!); nausea (why do they list it twice?), or thinning hair (but if I don't have hair how can it thin?); and the list goes on. At least two of the side effects aren't bad - weight loss and loss of appetite. I am not sure about the others and will be happy to skip them if given the option.

Today I am off for my morning walk as it is 48 degrees and will rain later. Then I will go for my first radiation treatment before working for a few hours. (I have decided that by the end of the week, I will start mutating or glowing or something.) I will also be really good at 'hydrating my skin' for the next 7 weeks or however long it will be. This top secret information will be disclosed to me today. Gee I can't wait! But I will get out of the parking lot without the assistance or intervention of a security guard. That is my goal for the day!

Another Lahey Parking Garage adventure

Upon my arrival at the Lahey parking garage yesterday, there was a big conversion van blocking one of the two entrances. I am not sure why. They just sat there until the security guard gave them a note (why a note? A special signal on where to park?). The gate was open and it was clear they would just fit but needless to say they caused a traffic jam by just sitting there. Then there were several OMWAHs and the parking garage was very full and I was late so they really aggravated me. Blocking parking spaces, taking several tries to park, and driving the wrong way in the one ways - my personal favorite. I ended up parking on the roof (right near the conversion van) and basically running to my appointment. (Its a good thing they were running late so they didn't check my blood pressure right away.)

It was an interesting doctor's appointment. Apparently I am not a candidate for the clinical trial (again) even though I did research (again). I did get a prescription for Tamoxifen for two years to be followed by an AI for the next three years. Hormone therapy is actually very important. It can reduce the risk of recurrance by up 40-50 percent, which is more than chemotherapy. It is another systemic approach (medical lesson for today) like chemo. In contrast, radiation is a localized approach. I also did get a promise to have my port taken out after my follow up appointment next month. We can have a little party when my port is out.

My next big adventure is radiation which starts tomorrow. Now that I am past this hormone therapy thing I need to focus on that. I know I had my simulation last week but radiation is complicated. Well, it makes life complicated. With chemo you just go and show up and feel like crap. With hormone therapy you take a pill every day. Those are easy. With radiation therapy you have to 'keep your skin hydrated'. But you can't put anything on your skin where it is being radiated that might have metals in it. This means no lotions each other than what they specifically state. So in the morning I have this one special (expensive) lotion that I can put on and that's it until my daily treatment. After radiation each day I am supposed to put on lotions and aloe 3-4 times each day. This will 'keep the skin hydrated' and help prevent the potential burning. Now, if my radiation is in the late afternoon and I can only put lotion on once before then first thing in the morning but then am supposed to put some on 3-4 times after that, I could be up all night. Very complicated. Never mind having to go every day as well!

My real concern with radiation is their stupid little parking lot. Now I could be a wimp and avoid it by parking in the big parking garage and walking 1/2 mile through Lahey each day and paying to park. Or I can be a big girl and actually learn to deal with the stupid little parking lot. Now since I am known for my extreme bravery in many circumstances I am sure some of you are thinking that of course I will park in the garage. However I am going to learn the secrets of the little lot and not let it get the better of me!

Another trip to Lahey!

What is a day without a trip to Lahey? Tomorrow is my 'down' day. It is the only weekday between now and the end of February I won't I have to go to Lahey. Gee, what a novelty. I haven't been there since last Thursday either! I might miss the place.

I did do some research on hormone therapy. Well, about time. I mean my appointment is this morning. What that did is to make me thoroughly confused. There is one drug, Tamoxifen, that has been around for about 40 years and is well regarded and used for pre and post menopausal women. Then there are these new drugs, AIs (Aromatase Inhibitors) which are used for post menopausal women - or thats what all the documentation I have seen says. But the clinical trial the doctor wants me to try is for premenopausal women and compares Taxmoxifen vs an AI and tests the variable of ovarian suppression (which is another topic to discuss with him). But if AI's are for post menopausal women, why would they give it to premenopausal women? This is a Phase III trial which means it has been around for a while and already shows promise. I am all confused. I need the doctor to explain this to me in little itty, bitty words so it might make sense to my limited chemobrain.

In the meantime I am not going to worry about that. I am going for a walk. Yesterday, I had a big brunch with friends and need to really get into the exercise plan. We also are having our January thaw. That means it was 36 degrees this morning. Last week, one morning it was 4 degrees. I went to the gym that day. Today I am walking outside in the brisk, fresh air. Counteracting the flabbiness caused by holidays, ice cream, and bacon.

I think I do need to clarify these wonderful gifts we got. Bacon of the Month Club is one pound of bacon delivered in dry ice to our door each month. (No we won't share. Don't bother asking.) This month was hickory smoked and quite good. Ice cream of the month club is four pints delivered every three months. Basically its a pint and 1/3 each month. If it was four pints each month, we would be getting a little chubbier. This delivery consisted of 1 pt butter pecan (gone), 1 pt. egg nog ice cream (gone), 1 pt. peppermint stick (mostly gone), and 1 qt. sheep's milk vanilla ice cream. We are very undecided on this. I think chocolate sauce will be needed for that first bite to make sure its okay. I mean I have had sheep's milk cheese but not ice cream. Most unusual. When we get really brave and try it (which will be as soon as we eat all the other ice cream we have), I will let you know.

Not to digress but after my walk, I go to the doctor and look for OMWAHs in the parking garage. I haven't been to the parking garage for a couple of weeks but I don't think they have disappeared. All my recent visits have been to Peabody or to the evil little parking lot where I 'have issues' and am turning into a 'problem visitor'. The big parking garage is the OMWAH homing center and very different.

Lots to do!

Yesterday I procrastinated. (What? Who me?) I did run around and do all the things I needed to - out for coffee, laundry and more laundry, Costco, etc. I ended up a tiny bit tired but did make it through the bulk of the day. Today I am going to brunch with friends. But first I have to plan all my questions for my appointment with my medical oncologist tomorrow. It is my first appointment since chemo ended and I will need to start hormone therapy soon (another topic I know nothing about but will be on for five years. Perhaps today is a good day to do some research.) He did recommend another clinical trial to me so this involves more homework. Do I want to take part in the trial? He gave me a file of information to read which I swear is around here someplace.

Also, I want to find out when I can get my port out. I heard an evil rumor that my oncologist likes patients to keep their port in for a YEAR! Not happening! I want it out! I guess the argument is what if you need to use it again? Well, if we lived on lives on 'what if', nothing would ever get done. Apparently, they can also be used for other medical procedures to avoid an IV. Well, when I had my MRI they said they had heard of a port being used once for an MRI and when I had my surgery they told me they never use ports. They need a better story than that. Besides when you have a port in you need to go in once per month to make an appointment to get it flushed out - another trip to Lahey!

My radiation starts Wednesday. I have to learn more about that too. I did learn how radiation works to which I found very educational. Therefore I need to share it with you. This is taken straight from www.breastcancer.org:

"Radiation therapy's high-energy beams are focused on the area that needs to be treated. This might include the breast area, lymph nodes, or another part of the body. Over time, this focused radiation damages cells that are in the path of its beam—normal cells as well as cancer cells. But radiation affects cancer cells more than normal cells. Cancer cells are very busy growing and making new cells—two activities that are very vulnerable to radiation damage. And because cancer cells are less organized than healthy cells, it's harder for them to repair the damage and recover. So cancer cells are more easily destroyed by radiation, while healthy, normal cells are better able to repair themselves and survive."

I know nothing about this stuff but am learning. I do know I won't be radioactive during treatment and the radiation is generated in a linear accelerator instead of using a tube or radioisotope. I also know that as your body works to recreate the healthy cells you get tired (read that as fatigue) and radiation hits your skin first so it gets affected (read sunburn). More on that later, I need to educate myself on this hormone therapy stuff today now that I have procrastinated down to the last minute.

Now where am I on my little trip across country... I think I have been to the beach and it sucked and now I am already packing the car and rushing around, to start heading back which is going to take a really long time as we haven't figured out what route to take yet and the car is acting funny.

PS Yesterday at Costco I did get tape refills so my new frog tape dispenser is now useful as well as decorative.

Today I am very busy

I went for a walk, have about 10 loads of laundry to finish doing (we were away last weekend so there are tons), meet some friends for coffee, clean the house, take down the Christmas tree, and go to Costco. (This all may be overly ambitious. Crabbiness may reappear.) Tomorrow I only have to meet friends for brunch and go for a walk with them I hope. My stupid bursitis in my hip is acting up - ouch! I will have to call the doctor for a referral to a rhuematologist I think - oh joy another doctor to go see! It hurts in my hip and then causes tingling down my leg.

I did enjoy my walk outside this morning but checked my sneakers first. I was wearing matching ones. Also, the other day I got to the gym and thought I had a wrinkle in my sock - but no, someone had put a kitty treat in my sneaker. Probably so I don't forget about him. How could I? He follows me everywhere!

But first before I do anything I have to finish cooking the bacon (of the month club) for breakfast. Last night we had ice cream (of the month club) for dessert. I am not checking my cholesterol anytime soon!

Three hours later

Three hours later I now have two little itty bitty tattoos. They are blue dots. How exciting. Well, it was actually kind of neat. They use a CT scan to decide where they need to radiate. I got to lie down in one position for about 30 minutes, without moving at all, while they did the CT scan, looked at the results and put their oh-so-important blue dots. Then I met with the nurse to learn all about radiation (how fun), side effects (skin issues and fatigue), and skin care. I was there for three hours. Its was really boring with lots of waiting around. Unfortunately I need to go back somewhere around 33-35 visits. I will be bored. My first visit is Wednesday. My last visit will be somewhere around the end of February or the beginning of March. Doesn't that sound really far away?

I actually don't really know exactly how many visits I will have. I don't think they have figured it out. I think what they do is take the CT images and determine the dose I need and divide it up over 25 visits where they radiate the whole breast. Then they look at the actual area where the tumor originally was and plan somewhere between 8-10 more visits where they radiate the more focused area. (I may have these numbers wrong but then I am not a radiation oncologist.) I do know the total number is somewhere around 33-35. When I go for the first visit they will tell me more details.

The first visit should take about 30 minutes because they want to recheck my tattoos and make sure everything is all set. Then each subsequent visit (the remaining 32-34) will take about 2 minutes for the actual two blasts of radiation I get, but I also need to allow for time to check in, get a gown, get changed, put stuff in locker, wait for the machine to be available, get zapped, get stuff out of locker, and get changed. I was told this takes about 20 minutes on a good day but to allow for up to an hour for a bad day. Every afternoon for most of 7 weeks. I can't wait. So much fun.

I did learn a couple things about the radiation area. They have a little waiting area which has a TV that was on soap operas but no way to change the channel. However it does have junk food. They had a giant box of donuts and then someone brought in home made cake. (I must think about holiday flab and avoid these!) Also, I am doomed with their little parking lot. Once again I had problems with the parking lot. The little machine wouldn't read my card. I had to ask for assistance. Then wait for someone to let me out of the lot. Last time I was there I created a line and had to ask for assistance. If I have 35 more visits, I can see this being an issue. The security guards will know me. They will start saying things like 'Its her again - the one who can't get out of the lot without assistance'. Daily visits could be a real issue.

Causing continual patient confusion

So yesterday I went to my appointment for the surgeon's follow up. I told him my story about removing steri strips accidentally and he didn't seem at all concerned. He actually thought the tape sealed the incision better than the stupid itchy steri strips. Also, the second area of concern from the MRI was just a vascular abnormality (so I am abnormal in yet another way). That was up in Peabody (20 minutes away).

That must have been the shortest doctor's appointment on record. I was in and out of there - including check in time - in less than 15 minutes. I didn't even have a chance to fill in their new home medication list. This is a new thing. They want you to bring a list of home medications and medical allergies with you to your appointments. They send it to you with your appointment reminder so you can fill it out at home and bring it with you filled in. I have actually remembered to bring one with me a few times but no one has ever asked to see it. Yesterday they gave me a blank one to fill in and I only got halfway through it and then they never asked for it anyway. Killing more trees...

So there I was driving down the highway to go to my next appointment in Burlington with radiation and my phone rang. Being a good person, I pulled over to check my voice mail and call back as it was the Burlington office looking for me because I had missed my 1030 am appointment yesterday morning. They called last week and had left a message with Walter that I had a 1030 and then 11 am appointments - obviously they did not look in the computer when they scheduled this as I already had an 1130 appointment 20 minutes away but in the same hospital. I immediately called back and said 1030 and 11 didn't work and rescheduled it for 130 pm. Well they never put that in their computer. And when I called them back yesterday they couldn't find the master sheet of paper they need for me. It is lost somewhere.

Needless to say I get to go back to Lahey today again to see if we can get through this. They were very nice and apologetic. What really gets me is one of the messages that they left at my home said something about how they knew I went to my 1130 appointment in Peabody. Grrr.... I assume they will not charge me for a missed appointment as the error was on their end. However, they are good at aggravating and cause continual patient confusion. Keeping them confused prevents them from complaining. (Actually I shouldn't complain because I think I do receive good care and don't have lots of issues with them. Its really just the scheduling stuff that gets aggravating - and the stupid floater nurse when I was hospitalized in August - let's not talk about her again!)

Yes there were OMWAHs in the Peabody parking lot. This was a new breed. He parked his giant conversion van, opened the door, took his time getting out, checked his pockets, looked back in his van, closed the door, walked up to the front of his van, started to walk away, walked back again, and then finally walked away. All this while I was waiting to pull into the empty space next to him (which was the only empty space in the lot). That's okay. Take your time. I am in no rush to go see the doctor. I am sure he won't mind waiting.

Today, the guilt sets in. I have to go to work this morning for a couple of hours and then spend the afternoon at Lahey. Should I go to the gym and work off my holiday flab this morning or should I be wimpy and claim it is too cold to go outside (4.1 degrees out - love those digital thermometers). I am pretty wimpy these days but also feel rather flabby. I was doing great on my diet yesterday until about 3 pm when I dug into the giant bag of cashews Santa left in my stocking. The good thing is they are basically gone now and I can't make such a pig of myself again.

(Un)fortunately we got our deliveries from bacon of the month club and ice cream of the month club. We must alter our diets so we can eat steamed vegetables with our bacon and ice cream I think. Skip the meat, just ice cream and bacon. Yummy!

Also, I think they will weigh me at the doctor's office today. I will claim my clothes weigh a good ten pounds I think. Really heavy socks.

Why am I so tired?

Could it be:

A. Attempting to stay up until midnight on New Year's Eve?
B. Going out in the evening three nights in a row?
C. Traveling out of state and sitting in a car for 3 hours?
D. Snow shoeing?
E. Surgery 2 weeks and 1 day ago?
F. Chemo ending 2 weeks and 6 days ago?
G. All of the above?

I vote for G. I went to bed at 8 pm last night. I was very tired. Not even really hungry for dinner - but that's okay since I ate enough over the holidays to allow me to hibernate for the winter. I would like to say that my fatigue has nothing to do with snow shoveling as I didn't do any!

At least I am well rested for my fun day at Lahey Clinic. First, I have a follow up with the surgeon and will have to tell him about my 'accidental' steri strip removal. (It was completely accidental. They came off when I took off the secondary bandage I had put over my incision and I replaced them with tape. I didn't pull them off on purpose. But the ones that are left are starting to itch.)

Then I meet with the nurse about radiation planning. This is where I find out how to prevent skin burning, etc during the six weeks of treatment. One big side effect is actually burned skin. Some people just get a big red area, some people actually get burned and peeling skin. Considering I burn if I am in the sun at all, guess which group I think I will end up in? (Yes, this is the power of positive thinking.) The other big side effect is fatigue. This apparently is different fatigue than with chemo. With chemo the fatigue is your body recovering from all the drugs they put in you. With radiation the fatigue is your body trying to regrow all the cells that are being killed off. (That's what the book told me now that I finally read it). So now that the chemo fatigue is going away, we can move on to radiation fatigue. Maybe I can write a book on fatigue when all this is done.

After that is the radiation simulation. Basically using a lot of physics and high level math, they try to figure out exactly where to aim to the radiation for each session. They want to make sure they get all the nasty cancer cells but not irrelevant things like your heart, lungs, rib cage, etc. They also want to be in the exact same place each time. To do this, they make a 'cradle' or something to hold you in the same position and they also give you little tiny tattoos to line up each time. I want to clarify, I am not getting a bunch of giant ugly tattoos. These will be little dots that will look like mini freckles afterwards.

After that joyous day, I will go to the grocery store unless I am too tired. We have no food in the house. If I am too tired, maybe we will have soup for dinner.

Did you?

Did you stay up until midnight? I did, if you count midnight in Iceland. I was up until about 1030pm local time. I was tired. That's my excuse. But it was already midnight in Iceland so I celebrated there. If you made it past 7 pm Eastern time, you made it to New Year's in London, which is the same as Reykjavik (but I think it is a little more exotic than London and I wouldn't mind going there sometime. I have been to London many times.)

We just got back from Vermont. They have lots of snow there. It did rain on Saturday so it was a bit 'crusty'. We snowshoed on Sunday and didn't always leave tracks.

What we did do is eat. We ate so well, we don't deserve to be hungry until sometime next week. We ate in expensive restaurants that served yummy food. We had two bad dining experiences in cheaper restaurants. We stopped for lunch at a diner on the way up that featured local food. Well, we think they went out and grew the lettuce for my salad or something. You know your food is slow in arriving when the diners at the next table, who arrived a good ten minutes after you, are eating their food before you get yours. And they turn to you and say 'are you still waiting to eat?' Then you know its a poorly run restaurant when they tell you the kitchen was really busy which is why our food was late. (They should at least come up with a better excuse.) Well, we now know where NOT to stop on our next visit to Quechee. We also stopped at another place for lunch and ordered: beverages, soup for each of us, and an appetizer to split for our 'main course'. The food arrived in this order: soup for Walter, beverages, water (on the second request), our appetizer, and then my soup (on the second request). Another place not to stop. Maybe its just the town both were in - the Twilight Zone of poorly run restaurants. (Can you tell this is a pet peeve of mine?)

On the other hand, you know you are at a really good restaurant when the waitress serves the child at the next table his meal, and tells him his vegetables are not touching anything else on his plate... Now we have eaten out enough that I no longer feel like it has been forever since I have been to a restaurant. I now want to cook and eat my own cooking.

We did stay at a nice little bed and breakfast in Woodstock. They said they have a cat who didn't go to the guest rooms. Well, this cat apparently didn't know that. I met him the first night we were there, he was sleeping downstairs. Then when we arrived for breakfast on our first morning, it was like home. He was sleeping on Walter's chair and had to be relocated. Then Monday afternoon he stopped by our room to say hello and again this morning. But he doesn't go to the guest rooms.

Needless to say our cat is mad at us. He ate the food left him, including the food he doesn't like. My brother and niece stopped by to feed him while we were gone but apparently it wasn't enough. He is very needy. I think he knows Walter made friends with another cat as he has been following me around. He will get over being mad once he gets to sleep on Walter for a couple of hours.

We did enjoy ourselves and got away. I did learn I am still not in good shape and get tired but I got to go play in the snow. Now I just have to rest up for three doctor appointments tomorrow. A new year and now I have to start paying the co-payments again. We maxed out our health insurance in September and I haven't paid a penny since then. Darn. Now I will have to stop being so cheap. As Walter carefully reminded me, it probably won't be too long until we max it out again! Not something I am looking forward to but then my cheap nature will take hold.

We did have a really nice time and it was nice to get away. Even if now we have to diet. (I hope they don't weigh me at all my doctor's apointments tomorrow. It won't be pretty!)