Winter :(

At the end of the month I go back for my follow-up with my cancer doctor. It has been a fast almost four months. My summer is gone. I desperately hate the Winter. But at least it will be the end of December and heading toward the rest of Winter which leads to Spring, my favorite season.If I can just survive the rest of this winter I'll be okay, I keep thinking. So, far no new signs of cancer.

My  big brother Steve had a stroke the Monday before Thanksgiving. Another reason to dislike Thanksgiving, haha... just kidding. I don't totally hate it. I think because it happens during the cold months. Maybe if it was in July I would love it! Steve is doing well considering what his body went through. Thankfully he has his memories intact and his mind is whole. Unfortunately his left side is paralyzed, but he can move some parts when asked. He will have to relearn how to use his left side. He is strong, and I know he will recover. It could have been a lot worse. He has a wonderful family that will be by his side helping him, and for that I am thankful.

Steve holding his granddaughter Mattison

Survivor's Guilt

This coming January will mark ten years since I first heard the words CANCER associated with my life. I have never felt like this cancer thing has defined who I am. It has been more something I have had to deal with along with other things life throws at you. I have had three separate encounters with it, in different forms. I dealt with it each time and simply kept living. Maybe cancer doesn't mean death for all its victims. Maybe medical science has found good ways to prolong the lives of some like me, or perhaps finding the cancer before it has had a chance to do the most damage... I don't know why I have survived. I ask myself that question a lot. Out of curiosity and of course, out of guilt.

I don't expect answers, especially to questions that are sort of unfair to begin with. After all, we are all dying and it's just a matter of when and where and how. But guilt is a little tricky. It plays with your mind and your heart, and is basically useless, but all the same is real.

I look out at family and friends who have lost family and friends to cancer and have feelings of survivors guilt. Their lives were much more relevant than my own, I think, when I consider the way they lived their lives, the fact that they had children (which I do not have), their shared experiences with loved ones, the way they made the world a better place, and how deeply needed they were and I honestly do not understand why it had to be that this disease took their lives and allows me to keep living.

I don't believe in a supreme being, so I tend to shake my head when people who survive cancer or some other near death experience claim that they think god must have intervened in their case because it wasn't their time, or because god must have been looking out for them, or they still had important tasks to finish here on earth. Well, what does that mean for those that didn't survive? For those that suffer and die? I keep surviving this disease but that doesn't mean I feel somehow privileged or that it means something more than simply not dying.I don't even feel lucky... even thinking that implies that others have bad luck.

 So, I don't tend to look for answers in religion because of the inherent inconsistencies and irrationalities. I would find more answers in science, but I'm not smart enough to do that either. Maybe one day, if the human species keeps surviving and evolving, we'll find answers to some of the medical questions, which would possibly lead to less and less people having to deal with cancer, but I don't think we'll ever survive long enough to dampen the burdens of guilt. I have no doubt however that most cancer victims would give anything to get their lives back and be burdened with guilt rather than with their ultimate fate.

If possible, would I trade places with one of those people I know who has died of cancer? Knowing how much their absence continues to hurt those that outlived them? In a heart beat. But of course, it's easy to answer questions that have no basis in reality. I don't believe in magic either.

Survival is only a temporary fix for that inevitable ending we all face. A matter of time. I guess I have no choice but to suck it up and keep living... for now anyway ;)

Good Riddance to Bad Rubbish

I see it has been a month since I've updated this blog. Considering this is a blog about cancer, I guess that's a good thing. Other than occasionally feeling tired I have had no more side effects or symptoms of any new cancer. It has been nice not having to go to the doctor, I must say. So, no more doctor appointment stress headaches, haha.

I decided yesterday to toss out The Mask. I've had it stored in a large black garbage bag ever since returning from the lake vacation, not really knowing what I was going to do with it and feeling ambivalent about tossing it. But then I looked at it yesterday and knew that it was bound for the garbage because I have no use for it whatsoever and I don't believe in keeping things just because they were important at one time or another. Honestly, what was I ever going to do with that ghastly device again anyway? It certainly had no relevance for anyone other than myself, and it pretty much was only a reminder of going through the daily grind of going through those radiation treatments and having a fried neck. So, it has been let go... good-bye to a contraption I only wish nobody else would ever have to experience, and may I never have the need for another one.

Hmm, maybe I should have run it over with the car first...

Giving Thanks

Doctor appointments keep coming... today I had an appointment with my eye doctor. That went well and he didn't give me a shot in my eye this time. Possibly down the road he might give me a steroid shot. Those have side effects of glaucoma and cataracts so he wants to delay that for as long as possible. Thankfully, no more doctor appointments for a while now, shew!

Today I got a nice phone call. It was from a nurse that I had at the cancer center. On Tuesday I mailed a thank you card to my radiologist, the nurses, and the radiation therapy team. In with the card I sent a photo of my mask with the painting of "The Scream" on it. She told me that they'd gotten the card and thought the mask was great. She said she herself didn't know the painting but many of them did and they were impressed. She said she would be showing the doctor when she saw him. That made my day, to say the least.

No small talk, please....

So, I ask myself, which do I want to write first, the good news or the bad news? How about the good news, since there is no... bad news, HA!

I slept good last night, but woke up not feeling too good, and sort of having a light case of dread... knowing I had to go see my oncologist today. Since last Thursday when my radiologist told me that he was pretty sure that my oncologist was going to start me on chemotherapy as the follow up to the radiation treatments, I was preparing myself to hear that bit of news today, and then starting chemo treatments possibly this week even.

My oncologist is a very down to business kind of doctor. Not a lot of small talk if any, and he's just very straight forward and to the point. My mom didn't like him from the first time she met him almost ten years ago. Me, I liked him. A lot. He seemed like a good doctor to me. Mom likes to chat with her doctors and wants them to be very friendly and warm. This guy wasn't. At all. Mom didn't like how he broke the news to me that I had stage 3 cancer. While I wouldn't have minded if he was super friendly and personable, it didn't bother me that he wasn't. I'm not exactly a chatty person either. I'm a realist. Then later, when we asked our GP what he thought of him, he agreed that he didn't have a terrific bedside manner, but that he was one of the best cancer doctors in the city. That was all I needed to hear, because I already liked his personality.

I think I appreciated the way he would look you straight in the eyes when talking to you and didn't talk down to you, and I think he's maybe a little shy like myself. And sometimes he surprises me... In the Fall of '08 I had an appointment on election day, and when he came in the room, I was expecting him to be his usual get down to business right away, no platitudes other than "How are you doing?", but he took me off guard and asked me if I had voted yet. I think it was the first time he ever had broken out any kind of small talk with me. I told him that I had voted absentee, and he said that was the way to do it. I guess he must have had to stand in line a while to wait to vote.

If I didn't like him before, I really like him after today.

I don't know why but I allowed mom to stay in the room for my exam this time. Normally I would have her wait and then come in after to hear what the doctor has to say, but I didn't want to have to bother with retrieving her.

The doctor came in with a young woman who was carrying a notepad or something. I assumed she was in training, but he never introduced her to me or told me the reason she was following him into the room. He asked how I was doing and asked when I finished with the radiation treatments and asked if I had a CT scan, etc. Mom told him that I'd also had a PET scan. Then he did something he always does... takes both my hands, holds them out in front of me, then feels my neck, collar etc. Then taps my back, asks if there is any pain. Also asks how my arms feel... he had informed me last time that this kind of cancer I had could make my arm hurt.

The young woman observed his examination (the dreaded pap smear, etc) and then they left to return after I dressed. I was sure I wasn't going to have to have a pap smear again since I'd just had one a couple months ago when I was last there. Again I was wrong. They always do it. I need to get used to that certainty.

He went over my scan and PET results and said that the lump had shrunk and said that I probably noticed that, and I agreed that I couldn't even feel any of it now. He asked what my radiologist had planned now, and I told him that he hadn't said and we were suppose to find out from him. I hadn't expected that question. Hm. Anyway, then he said that since the CT scans and the PET scans had only shown the neck area incidents of cancer (my words), and since the lump was shrinking we would be okay to just let it go for now, and that it wouldn't be necessary to treat it with chemo since there wasn't really anything to treat and why put my body through chemo when there wasn't any other signs of cancer anywhere else. He said that I would know if the cancer shows up again - it would make itself known to me, but that it might not come back. We will just have to wait and see. So, I go back in four months... then he will schedule a new CT scan before I see him the time after then. No chemo. At least not now.

Unbelievable. I am so happy, and I have the best oncologist in the universe :)

Oh yea, on the way out we got some small talk. He asked if we were going to the state fair. Mom said, "No thank you!" And I said I had enough of the fair when I was younger. He laughed.

Good News Bad News

So I ask myself, which do I want to write first? The good news or the bad news? The good news of course -- bad news is annoying.

I had my CT scan today. Boy, did that go fast. Just the neck so I didn't even have to hold my breath. And the sweet lady that did the scan told me I had beautiful eye lashes. So sweet. She was really nice and very attentive. She got me and mom to a room to wait for the doctor.

The nurse came in to do the usual rundown and it was a nurse that I've had a lot, even back in 2007. She kind of freaked us out at first because she seemed confused as to why I was there and asked if I had had a scan because they were going to treat a new area. Um, NO. Yea, we straightened that out fast.

The doc came in and we joked and talked about his foot, which he had fractured and had in a fancy boot. Then he went to check on the CT scan to see if he could find out anything. He came back and told me that the tumor had shrunk more than half it's original size. He gave me numbers but I can't remember them -- you know how I am with numbers. We were all pleased with that and he said he would make sure that my oncologist got the CT results, and that we would see what he says. Mom then asked if he thought that he might decide to have me do chemotherapy. I held my breath, hoping against hope that I would somehow get to escape it. He said that it was possible and that he thought that it was probably what my doctor would suggest next. Damn.

Of course, maybe he won't.

But I've been thinking about it, and since the tumor is still there, though he said it would continue to shrink, maybe it's best I have the chemo to make sure it has less of a chance of coming back. I don't know. So, I have a week until I go see the oncologist and find out my fate.

I think the thing that scares me the most is the nausea. I hate feeling nauseous. I hate throwing up.

So, the bad news kind of ruined my day, but I'm okay and I have beautiful eye lashes ;)

The Scream

No CT scan on Tuesday. The doc hurt his foot and had to reschedule, so I'll be doing it tomorrow.

So, ever since I had the radiation mask made for me, I thought about what I might do with it when my treatments were over. I could have thrown it away or used it as a pasta strainer... but what I really wanted to do was to paint it. Almost everyday while wearing it during treatments I thought of what I might paint on it. My first idea was to somehow make it into a spongebob squarepants mask, but I couldn't figure out how to make a rounded object into a squarepants head.

Then my creative, fun-loving sister-in-law Lisa decided that we would have a costume contest on our summer vacation at the lake cabin. The contest was that each person or family would have to come up with a costume and there would be a delightful prize to be won for the best costume. Well, I couldn't think of anything and pretty much immediately decided I would just paint my mask and that would be my costume.

I finally decided to paint something I thought was wildly appropriate for a torture device such as my radiation mask. I decided to paint Eduard Munch's famous painting "The Scream" on my mask. It doesn't get more symbolic than that, right?

Hi Stupid Cancer Blog

Hi, Stupid Cancer Blog.... I never really did explain the title of this blog. When I say "stupid cancer blog", I'm not saying the blog itself is stupid (though maybe ill-advised), what I'm saying is that the cancer is stupid. Really stupid.

So, I am back from a week at the lake with family. What a great family. They are all so wonderful and I am truly thankful to belong. I don't deserve them but I am damn glad to have them.

A week away is a week away from cancer too, in a way. I didn't think to even check the lump once to see if it was still there, or not. I was surprised to notice I can't feel any of it anymore. Again, the mystery of where it went still intrigues me, though not enough to really do anything about it. It is stupid cancer anyway.

Tomorrow I go get a new CT scan on the neck. I don't have to drink any contrast liquid so I don't have to fast before going. I probably won't eat before going anyway; I usually don't. Then the CT scan results travel to my oncologist, who hopefully will get it by the time I go see him next week.

Baby Soft

I have the recipe for really soft skin. RADIATION! The skin on my neck and under my chin is soft as a baby's butt!

I imagine that has to do with the skin burning and new skin replacing it. But not all the skin was burned so I'm not sure about that. Very strange but really nice side effect, eh?

Need to Know?

As the tumor shrinks day after day, I wonder where it is going. And why doesn't it take other things with it? I really should educate myself on radiation and how it works. You shouldn't be treated with something that you don't fully understand, right? I mean, I know radiation in itself causes cancer, as well as it killing cancer. I don't know how or why. I know it has damaged my body over the years. I had two other radiation treatment therapies, once in 2001 and then again in 2007, besides this latest one. I know that the previous ones damaged my kidneys.

I don't know, maybe it's better to not know everything....

Joy to the World

I had my first follow up with my radiology doctor, and when we weren't all chatting about his son's upcoming wedding, he looked at my neck and agreed with me that the lump had shrunk. He decided that I should have a new CT scan before I go to see my oncologist at the end of August. I am glad about that. It seems a waste to go see him if I don't have some way to show him the results of what the radiation treatments have done. I am just hoping that he doesn't recommend I have chemotherapy.

I can't believe it is August. I hate the thought of summer being over. Hate it so much. Even if my summer was spent driving back and forth to Maplewood every day and putting that hideous mask on.

Happily I was able to spend a couple hours on Monday with my childhood friend Joy, who was in town from North Carolina to visit her dad and some family. Nothing beats connecting with someone you've known your whole life and catching up. She is a wonderful person and I am very lucky to always have her love and support.

The Lump

I just noticed tonight that the lump in my neck... okay, I'll call it what it is: the tumor in my neck, is barely noticeable. It is amazing to me that it has shrunk this much. I can still feel it there, but it is softer and so much smaller. I don't think it is just my imagination either.

I am feeling pretty good lately, though still tired. The burn is still raw and disgusting looking. I actually don't want to go anywhere where anyone might have to look at it. I have to keep it greased up or it gets dry and starts to hurt. Taking a shower is unpleasant. I really empathize with burn victims more now than I ever have. Good news is that I can feel that the lump has shrunk already. Hopefully that will continue.

I was able to motivate myself enough yesterday to sit and do some work on a long overdue portrait. I got a lot done on it too, so I feel good about that.

Plain Luck

The radiation burn is really stinging and itching. Taking a shower today was painful, but I survived. The part that's the worst is the part that's peeling. My nice dark tan is peeling away, and under it is very pink sensitive skin. I always wanted to be African American because many black people have such beautiful skin, and so I finally got my wish (partially on my neck anyway), and now it's peeling away. Now I am treating it with a prescription called Triamcinolone Acetonide, which seems to put a thin coating of a waxy substance on the burn.

I was watching a show on TV this morning. It was William Shatner interviewing Jerry Springer. They were talking about Springer's family that was murdered in Nazi Germany because they were Jews. He was talking about being on a TV show himself where they trace back your family history, and how they showed him so much information that they had found... all kinds of records of dates, places, names, and how his grandmother and others were put into a van and while they were driven a ways they were gassed at the same time. So then, my mind starts wandering as it often does... I got to thinking about concentration camps and Nazi Germany and the extermination of innocent people. I have always been very aware of the holocaust because I read The Diary of Anne Frank when I was about thirteen. I believe it helped shape my awareness of the human ability to do evil, and how easily civilization can break down. It's why any kind of extremism has always scared the crap out of me.

Anyway... I thought about (again, because I think this often) how fortunate I am to have been born when I was born and where I was born, and given the opportunity to live a peaceful life with those I love. I thought about how having cancer didn't mean I had to die, but that I was given the opportunity to find ways to treat it that allowed me to continue to live that peaceful life. I considered the fact that if I had been a European Jew in the middle of Nazi Germany and had cancer that it would basically have no significance to my life. It would be of no consequence. It would neither matter if I was able to find treatment or if I totally ignored it. War was going to take care of it for me. Hitler and the Nazi's would want me dead, so having cancer would be a moot point. Nobody would be interested in helping me.

So, here I am being treated for cancer for the third time--surviving ten years with it so far. Why am I so lucky? I honestly don't think there is any reason. No answer to that. And the only hope for others to have the same opportunity to find treatment and cures in the future is for civilization not to break down and to continue to evolve. Ignorance, intolerance and hatred are the things that would change that.

Summer Birthdays and Tornadoes

My first week this summer with no radiation treatments to go to. I am so lost. Not.

I'm feeling okay, but still tire easily and again it feels like there is a rock in my throat when I swallow, but it's not painfully sore like the first time that happened. I'll keep taking the non-vomit inducing OraMagic mouth rinse stuff, and I need to drink more water.

In an earlier blog entry I mentioned the size of my medical file at the Cancer Center. So, last Wednesday I took a photo of it when the doctor had to leave the room for a minute. It's huge. It's embarrassing. Each time you go to the cancer center, they take a photo of you. That file now has three different photos of me!

This past Saturday my brother Jay and sister-in-law Alicia had a combined birthday party for all three of their children, so we drove down there a little earlier and the kids opened their birthday presents (because the invite said not to bring gifts, but we did). It was a very humid day, but Jay's house is surrounded by trees so it didn't feel too sticky. Their property is just beautiful. But it was kind of raining, and storms were threatening, but he had a tent up and chairs set up in the garage as well. The kids were really excited to open grandma's presents. Nik got two hockey goal sets, Anna got an American Girl doll (her birthday & Christmas present), and Ellise got a little bike with training wheels. They were in heaven. I gave them a big three lane water slide and a sprinkler.

I was kind of afraid to go to the party because I knew there were going to be a LOT of little kids there and I didn't want to scare them if they looked at my revoltingly molting neck. But they didn't really notice me (imagine that!) They all got to play games and ride Jay's zip line and Nik was the one that broke open the pinata. (It was also my brother Larry's birthday!) Here is a video of Nik hitting the pinata. He's the little guy in the navy and red Twins outfit at the end who hits it with a wicked swing. Joe Mauer look out!

We left early, thankfully. Bad thunderstorms and tornadoes blew in about an hour later. Unfortunately everyone else left right in the middle of the onslaught. It reminded me of when we were kids and Larry and I had combined birthday parties in July and every time we had one it seemed like there were tornado warnings and everyone ended up in the basement.

Everyone made it home safely, though some had to do without electricity for a while.

Now What?

Thursday night was my last radiation treatment on my neck. I had a total of 30 treatments. The lump feels a bit smaller, but you can't expect it to disappear or shrink to pea size overnight. The burn on my neck is a pain in the arse, but I'm no worse for wear. I go back to see the radiologist in two weeks, then again two weeks after than, and to see my oncologist in a month. Dr.'s are great people and I owe them a lot, but I really hate going to see them. Hate it.

My last treatment went very well. The Mask was almost "comforting" and instead of feeling like something that was trying to kill me, it felt bizarrely like a security blanket. Not that I miss the damn thing... hell no. Just looking at it makes me cringe a bit. Yep, I got to take it home with me. I don't know what I'm going to do with it yet. My favorite therapist was there for my last treatment. He's the one that asks if you're doing okay when he puts the mask on. Just a really nice person, but then again, they are all really nice. He gave me the certificate of congratulations that has all their names on it. It looked familiar since I must have gotten one back in 2007 as well, and maybe even back in 2001. Believe me, there were some days that I felt like I couldn't keep going, so I guess it was somewhat of an accomplishment. I hope it's the last time I have to go there on a daily basis, but logically I doubt that is possible. But for now, I am just happy to be DONE.

As much as mom and I wanted to go get drunk afterward, we went straight home and watched the Twins get killed by the White Sox.

Curveballs

Life is full of curve balls isn't it? That's what I love about it, and why I love baseball. You just never know what will happen. When you sit down to watch a baseball game, there is no way you can possibly predict what will happen. You don't know, you might have started to watch a game that will end prematurely because of rain, or one that might last into the morning in extra innings. No way in hell you can predict what will go on during that game either. You can't say that about other ball games, can you? Maybe you can, but I can't think of one.

So, my curve ball came this morning when we were about to leave for my LAST radiation treatment. Number 30. I got a call from one of the therapists telling me that his machine wasn't working and he asked if I could instead come in at seven o'clock tonight. Sure, no problem... but pretty funny considering it is my last treatment. I am just hoping the machine is working then and I don't have to go tomorrow... but I will if that's what happens.

Who knows!

Big Fat Files

Things went much better today, thankfully. And I don't feel as drained either, but I have a huge headache, so I won't be long at the computer.

Mom was telling me the other day what the cost of each treatment is, and how much my PET scan was... I don't like knowing. It's crazy expensive and I can't help thinking that I'm not worth that kind of money. But, I'm really never given any kind of option but to get treated. You just do what they tell you you have to do and you go with the flow and keep breathing. The only thing that makes me feel better about it all is that hopefully my doctors and therapists learn something from treating me that they can pass on to their other patients or just general knowledge of the disease. My file is huge at the Cancer Center. It started in 2001, and all my information is in that dictionary sized file that the doctor lugs into the office with him every Wednesday. He even commented at how big it was. So, I guess when they no longer need it, they will either toss it out or do whatever else they do with them... maybe a bird sanctuary somewhere has lots of cages that need flooring.

I only have two more treatments left, and I don't know what happens after that. I am excited, however, to bring home my Mask.

Woe is Me

I had a small panic attack when they put The Mask on today. STRANGE. Just felt like maybe I might die, you know, or pass out. Pretty funny considering I only have three more sessions left. So much for thinking I was beyond it all.

So, I have complaints today. Feeling kind of blue, and also feeling zapped of all energy. Oh, and not to mention half of my neck is burnt to a crisp. Other than that I'm doin' good, haha.

Buzzzzz....

Next week is my last week of radiation treatment. I have four sessions left. Where is July going so fast? I want to be done, but I want my summer back.

Today I had some humorously bad thoughts while getting my treatment. I was noticing that the buzzzzzz of the radiation when it's delivering its juice to my neck was lasting a little bit longer than it used to. Of course, I knew that they were giving me more in these final treatments because the doctor told me that. So, listening to the buzz as it zapped me, I wondered what would happen if they forgot it was going and forgot to stop it? What if it kept zapping me? Would it kill me? Would my head explode? Would I start on fire? Yea, sometimes you find your mind wandering....

Oh baby, I'm sooooo tiard

Today I found myself to be very tired and sleep found me and wouldn't let me go. So, I'm on my way to bed again and hoping I can at least read a few chapters of my book before falling asleep again...

My treatment today was good, but there wasn't the ease of the previous days. Any one little thing can make everything feel a little off. And for the first time, I didn't leave feeling hungry. I might have finally lost my appetite. 'Bout time. They tell you they don't want you to lose weight, but it would be nice to lose a few pounds.

Color Me Burned

Today was see-the-doctor-day at the cancer center. He told me that they've been giving me a concentrated dose of the radiation in these last sessions, and that's why the skin on my neck is getting so burned. So, I thought I would take a photo of my neck with my new camera. You can pretty much see the exact line of where the radiation is treating me. He said that it will continue to get more burned. I only have until next Thursday, then I'm done. He advised to keep the area wet with the special burn creams or lotions. I'm using something called Aquaphor, which is kind of like a vaseline type substance.

We went to see Auntie June again today, but this time we brought her lunch and she paid for it as a birthday treat. I couldn't argue her out of that one, bless her heart.

Ode To A Tumor

Well, today the parking lot was brimming, unlike the day before when we were the only ones stupid enough to show up. The same couple was in the waiting room with us that has been there for a while now, and we were greeted with a bright hello from them. She is a breast cancer patient, and she was trying on some of the caps they have in a basket on the corner table. She went with the black and white zebra print. She said her hair was starting to come back (she is almost finished with her radiation treatments, and I assume she completed chemotherapy before that), but that it was coming in real gray. Mom said that was typical and told her that it would probably come in curly, too, but that once you cut it it would go back to being straight. I didn't know mom knew that. She's smarter than she lets on.

My therapist today is a young woman who also treated me back in 2007, so I am pretty comfortable with her. She's very sweet. The Mask was not tight today at all. I was back in the room on the left, which I prefer (because I'm used to it). I always expected that sooner or later I would stop feeling claustrophobic under The Mask, and it would not affect me like it did at the beginning, and I was right. It's all routine now. I take my deep breaths, get swallowed by The Mask, and do my best to relax for the fifteen or so minutes in that room. But, believe me there were days where I truly wondered if that would happen. I was kind of taken for a loop by the whole thing... never realizing I was claustrophobic at all and having those panic feelings for the first time. I'm much more comfortable being in control of things and not having irrational fears. Irrational things bother me, so I was not liking it at all.

So, now that I am over The Mask anxieties, I am dealing with what I was warned would happen, and that is irritated skin. The skin on my neck is starting to feel like a bad sunburn. It's not quite a bad sunburn, but it is definitely tender to the touch and a bit itchy. I'm using lotion and anti-itch powder on it.

The previous times that I was treated for this disease, I had tumors, but they were not visible to me and I could not feel them. This time is different. I can feel this tumor and it is a different experience than before. Being able to feel the tumor is a bit more daunting, if only because you can reach up and touch it and know for yourself if it's going away or not. The other times, I didn't really bother to even think about it. Well, the first tumor was removed with surgery, so that was different as well. The other tumor did shrink, from what the CT scans revealed. The reality of cancer sometimes doesn't register when the tumor isn't visible and you can't measure it with the touch of your fingertips. At least three times a day I'll touch it and estimate its size, and I wonder if it will always be there and I will simply have to live with it. I guess only time will tell, and even then, will it matter, really? I mean, doesn't everyone die from something whether you know about it in advance or not? You simply just have to live day to day.

Unscheduled Visits

I don't know if I should feel really stupid or not. Today I got all ready and we went to the cancer center for my *scheduled* 10:00 a.m. appointment, and we got there and the parking lot was completely empty and the place was very obviously not open. Today is the day after July 4th, and I know that the government is closed down, and no mail today, and some businesses are closed but I didn't know that the cancer center closed as well. Of course, it would have helped if they hadn't written a time for my treatment on the schedule they made for me. I guess they forgot. So... I just add on another day at the end.

We stopped in to see Auntie June to pick up the magazines she gets for me from a friend of hers, and brought her some watermelon.

Opposite Day with Erin

Yesterday was my birthday so I gave myself the day off from blogging. So there. Actually, I've been tired, and this week seemed to last forever, so I haven't had much energy to post. I had a wonderful birthday and spent the evening with my sibs and their spouses, except for Jay and family, and Lisa made a yummy carrot cake, and I was spoiled rotten by their incredibly generous gifts.

On Wednesday, I thought I had my head situated in the pillow perfectly, but the therapist kept telling me to scoot up a tiny bit. I don't think I succeeded and so the mask was tight. But it must not have bothered me too much because I almost fell asleep!

Today, for reasons I won't bother to get into, my niece Erin drove us to the center. She's a very good driver by the way. We got there kind of early and I noticed when I signed in to the computer the time for my appointment had changed from 10:45 to 11:00, so I knew they must have been running behind.

A woman in the waiting room, a breast cancer patient, had a little girl with her. I guess she was there the day before too but I didn't see her, mom did. Anyway, it is hard to see that someone who has a little girl with her is going through cancer. This little girl was so well behaved, she just sat there in her chair quiet as can be, and she looked like a little doll... just adorable and perfect in her little dress with her curly black hair in a headband.

I asked Erin if she wanted to come back and see how they do everything. I don't know if she really wanted to but she must have seen that I really wanted her too. I tried to enticed her by telling her that there are good looking guys back there... which was funny because I didn't see any of the regular girls back there at all today only the guys. I also thought it could be a field trip type of thing.

Today was like opposite day. I had to use the other room today. He said they were running behind in my usual room. So everything is on the opposite side, and it is hard to go from doing everything one way and now having to do it the opposite. Just a little weird.

It's pretty cool to have someone besides myself to see what it's all about, so thanks Erin for sharing the experience with me today.

I am not sure really what she thought of it... you have to quiz her about things because she's not a big talker ;) But we have a lot of laughs together.

Afterward I got her lunch at LeeAnn Chin, one of our favorite places to eat! Then later we tried to Skype with Allie but she wasn't online. Another reason it was opposite day... on the webcam we were both agreeing that we hated how when you look at yourself on the webcam everything is opposite. You try to fix your hair and you end up messing up the side that didn't need fixing, etc. But smarty-pants Erin figured out how to change that so now everything is right with the world.

(BTW, I am able to Skype because my brother Larry and his family got me the webcam for my birthday - thanks you guys!)

Unscheduled Freckles

I think I might be losing my favorite therapist... at least temporarily. He is the one that always asks how I'm doing as he's putting The Mask on. He is really nice and has a very empathetic voice. Anyway, he said something that didn't quite register with me until I left the center. He said, "I'll probably see you again." I thought, well yes, I usually see you every day or at least every other day. But I didn't say anything. Then I remembered we were talking the other day about how much he works and he said he's got a vacation coming up. So, hopefully he is about to start that long awaited vacation. He certainly deserves it.

Meanwhile, for me, July is starting and I am more than halfway through treatments, and it looks like I have nine left. I am not completely sure about that because technically my scheduled calendar has me booked up for fourteen more sessions, but I was told that those were booked just in case we needed them.

Saw the doctor today and told him about the Magic Mouthwash debacle. He seemed a bit surprised that my sore throat was gone, and wondered if maybe it was more than the radiation that caused it in the first place. I didn't think so because it wasn't like a normal virus sore throat. Of course Mom attributes the cured sore throat to her prayers.

The doctor didn't note any significant changes in the lump but mentioned that I'm getting a nice tan on my neck... which I have also noticed, along with lots of new freckles.

Luckiness

Today wasn't as gold as yesterday, but not bad all the same. At least we didn't have to worry about parking since we found a great spot as soon as we got there. Good thing too, because we were running a little late.

The Mask was not tight at all today and I was able to relax nicely. I think it most definitely has something to do with the pillow and where I situate my head when I lay down. Mom said that I was in there a long time. It didn't seem much longer than usual to me.

I know I am very lucky. I have had no real serious or painful side-effects or symptoms from the cancer. I don't have to be on pain medications daily. The only thing that slightly bothers me is occasionally it feels tight around my neck, like I'm wearing a too tight turtleneck or have a scarf tied around my neck. But no real pain. The sore throat has gone away. It only lasted for about a week.

Yes, very lucky.

Some Days Are Gold

I wish every treatment was as easy and fast as today's was. I don't know why it went so well, or why I had zero anxiety but it sure was nice. Only bad thing was that we didn't get a good parking spot when we got there. That's the negative thing about having morning appointments and not late afternoon/evening appointments.

My guess as to why today went well was because my morning wasn't rushed and I didn't have to wait very long to get in. In fact, I think I only had to wait about three minutes. We usually like to get there early in case we can get in early. It doesn't happen often, but it happens. And then when the therapist brought me in, I made sure that my head was in the molded pillow thing perfectly when I laid down. It seems that if I don't get my head situated right, then everything is off, and The Mask won't feel right... usually too tight either up at the forehead or down around the mouth and neck. Also, she knew my routine and allowed me to lay there and take some deep breaths and relax before telling her when she could attach The Mask. And then, the treatment seemed to go especially fast. Maybe they fixed the machines last Friday?I don't know, but it was a smooth day and I didn't feel as tired and spent as I usually do afterward. I just never know what kind of day I'm going to have.

Wild Turkey Pooh

Remember when I warned you about the goose poop at the Maplewood Cancer Center? I forgot to mention the other day that we saw three enormous wild turkeys in the parking lot. So, that ain't only goose poop you have to navigate around, I don't think.

It's All Good

I woke up early (for me) because I had an early radiation treatment scheduled for today and got all ready and then got a phone call telling me that the machines had gone down and so my appointment was canceled for the day, and we would just add another day onto my calendar of appointments. Happy day, a nice three day weekend off! More good news is that my throat is feeling much better today. I am just lucky that I'm not one of those cancer patients that has to drive all the way in from Wisconsin. Imagine having driven all the way in and then finding out your appointment was canceled?

Rituals

We all have our rituals... patterns of behavior that help us make it through the day or certain situations. Today at my radiation treatment I laid down, got my head situated, and they (two of the therapists - I learned they are called therapists, not techs), got my hands in the cuffs and I lowered my knees, and then they started to put The Mask on. They were talking between themselves about something or other, which I wasn't paying attention to. Then the male therapist apologized and asked if they were putting The Mask on too quickly, and mentioned that I normally like to take a bit to catch my breath and relax. He remembered I have a ritual that helps me cope with The Mask. So, they didn't finish attaching it to the board and let me take my few deep breaths and let them know when it was the right time to put it on. They have so many patients, yet they manage to remember my little ritual. There is another therapist, named Brian, who always asks me if I am doing okay and if I'm still with him, as he's putting on The Mask. I wonder if they have to go through getting a mask themselves so that they can relate to what it is like or not?

Sometimes, when I first get The Mask on, I feel like I could die... or pass out... or freak out, or all three. But then I work my way through it and start to consciously try to relax and go with the flo.

After the treatment was done, and the therapist helped me sit back up, I pointed to this pink slab that was leaning up against the wall and asked him what it was. He said that it's for patients that have to lay on their stomachs, mostly breast cancer patients. There is a place for them to put their face, and two cut outs (only one was open) for the breasts so that the breast can be exposed for treatment. Oh boy, just when I think I have it bad with The Mask...

Back at home, before lunch I took some of the Magic Mouthwash we got from the pharmacy today. I drank the tablespoon of it with a straw, which they recommend if you are going to swallow it, so that it goes straight to coat your throat. Well, it coated it, and soon after I started to gag and then magically vomited it back up. It numbed my throat a lot, but I think maybe because I had an empty stomach, and had already been feeling a bit nauseous, it didn't agree with me. It was very bitter tasting as well. I would rather have the sore throat than go through that everyday, but I will give it a try again another day. Maybe before dinner.

Magic Mouthwash and White Castle's

It's Wednesday, almost Thursday already... I want time to go fast so I can be done with treatments but I do not want my summer to fly by. I am enjoying every second of this summer. I love the storms we've been getting, and the cloud formations have been exciting. It doesn't take a whole lot to please me anymore.

Treatments have been going well. Each day I go however I don't know how I will feel under The Mask. Monday was good and I felt so relaxed. I almost fell asleep. Tuesday and Wednesday weren't as good and I don't know why. Some days I guess I just feel more anxious than others. It is so nice having mom there for support.

It was Doctor day. Because my throat has been hurting, we had two prescriptions filled there at the Cancer Center for something called Magic Mouthwash, which you take before meals to numb the throat, and another one that you take after meals, to help healing. I asked the doctor what causes the pain... is it the radiation burning your throat, since it doesn't feel like the kind of sore throat you get with a cold? He said yes, that was right. He said that you can just swish the mouthwash around in your mouth but because the pain in the throat is centralized more at the left side of the throat and deeper, it will help more to swallow it. The pharmacy wanted to make sure they had the right concoction so we decided to wait until tomorrow to pick it up instead of waiting any longer.

Today we brought lunch over for Auntie June after my treatment. It is her birthday on Friday. We brought White Castle's (please don't tell Dan, as she is keeping that a secret from him!). We also had, besides the burgers, onion chips and chocolate shakes. Since I don't love the onions and pickles, I scrapped those off my burgers and let Mom and Auntie June fight over them.

Paper Dolls and Codeine

Today was Father's Day... the first one without my dad. He always loved Father's Day because he usually got money from everyone, and he used it at the casinos.

Lots of family were over to visit. I made banana bread and a cake (which Dad would have loved, even the banana bread). Mom made barbecued beef, yum. Everyone brought something to share. The weather was beautiful and it was a really nice day. Anna brought some paper and new colored pencils, so I suggested we make some paper dolls. She thought that was pretty okay, and she had lots of creative ideas. Oh, and when we were eating, I came out with my paper plate of food and sat on the bench next to Ellise, and she got up and fled to her mom. That was my answer to, "Can I sit by you, Lisee?" Then darling little Nik, who was sitting on the other side of the table said, "I'd sit by you if I was over there." Just too sweet! So, he came over and dined with me. I got a smile out of Ellise later, so no worries.

I noticed all day that my throat hurts when I swallow. First major side-effect from the radiation - they warn you about this. When I swallow food it sort of feels like I'm swallowing a rock, or at least a stale marshmallow. I'll take a codeine tonight to see if that helps, but there are mouth rinses you can make, which I'll also try... tomorrow.

TGIF

Today was the end of my third week of radiation treatment for the Adenocarcinoma cancer in my neck. 13 down, 16 to go.

Today was a pretty good session. No anxiety and I think my head was in the mold correctly so the mask didn't fit so tightly like it did the day before.

My sister Teri came to the cancer center to pick up mom's gold tooth fillings to cash in at her gold party, and to see us. Ah, gotta love this economy... What's next, parties to sell your kidney's? ;)

Beauty Bumps

I forgot to mention yesterday that the doctor felt the lump in my neck and said he thought it seemed to be getting softer. It doesn't feel softer to me but he's the expert. For me, sometimes it feels smaller sometimes not. It kind of depends on which way I turn my head, etc.

I took a Tylenol 3 for the pain in my tooth, so I am falling asleep here at the keyboard, so I'll keep this one short. Jeannie, Sara, Suzie and Amelia came to visit today. Sara had her two kids, Mattie and Isaiah, Suzie had her two girls, Caitlyn and Ava, and Amelia had Mackenzie, her cousin's baby girl whom she's taking care of this summer. I don't know how they feel, but I love spending time with them because they are so funny and they make me laugh, and they don't seem to mind my jokes. And the kids are adorable, of course.

Radiation today kind of sucked. I don't think I had my head in the head mold the right way and The Mask was extra tight. Thankfully the session was pretty fast, and no computer reboots. When I sat up, Brian the tech said that I had "beauty bumps". Sure enough, I felt my forehead and the mask had made an impression into my skin and left little raised bumps from the holes in The Mask. Yeah, like I'm not beautiful enough! ;>

PET My Scan

Things were running late today at radiation. The poor woman ahead of me was having her first session, perhaps her set up session, and she had to be on the board for a long time and I guess she had a really hard time. I was brought back there and asked to sit down and wait. I saw them bring in a wheelchair and one of the nurses. When they wheeled her out she looked okay, but maybe laying down for a long time made her too dizzy to walk. I know that when I sit up from the board I am dizzy for about five seconds, and I wait about fifteen seconds before I get up and go. Anyway, I totally felt bad for her.

My session went pretty quickly... then it was time to see my radiologist for my weekly Wednesday appointment with him. As soon as he comes in Mom questions him, "Is it bad news?" I didn't even know what she was talking about for a moment, and he didn't either. She then asked about the PET scan results. He said that it looked okay and he didn't see anything else besides the lump on my neck. Yippee. Of course, Mom cries and says she has been so worried and has been praying. A moment later I say, "I sometimes wonder if we are even related, because I had barely given it a thought (since last week)." The doc looks up and smiles and then says, "Must be because she does all the worrying for you."

That was so funny and so true! But honestly, I don't worry because I know it is out of my hands and worrying only makes you sicker and it is a waste of energy. I guess it's just how I deal with things. We all do it differently.

Jackalopes

Today was a much better day at radiation therapy than yesterday. No computer problems and no waiting really. The Mask was feeling tight, but not too bad. I went by myself today... it was strange not having mom there with me. The reason I was alone was because I was going to meet friends for dinner up the street at Chili's after my treatment.

Sometimes, when I feel crappy about my life and myself, I just want to stay home and never go anywhere. But then I couldn't see my friends like I did today, and I would miss that. It was nice spending a couple hours with Deb, Sue and Beth. They always have some funny stories and news to catch up on. Thanks for being such great friends to me always!

One little story... I sent out an email game called Scategories where you had to give a word that started with the first letter of your last name, and Beth filled it out and sent it back to some of us, but also included her sister on the email. One of the questions was "name an animal". Beth's last name is Johnson and she said, "Jackalope". I emailed back, hitting reply ALL, and said, "Beth, a Jackalope isn't a real animal LOL", and she replied back, "You are correct - I wonder where I heard that word before?" And I replied back (to all), "Jackalopes are a legendary creature famous out in the northwestern states. When I went to Jackson Hole Wyoming, they had them all over the place. On T-shirts and on the walls, etc." So, anyway, tonight Beth tells us that her sister kept calling her and asking her why was she getting these dumb email about Jackalopes and she didn't care if they were legendary creatures. I realize now that her name is Deb on the emails, and so I didn't notice her name and thought it was my other friend Deb. Her poor sister!

Oh, and Deb had something comforting to tell me after I told them about how on Monday I thought they might have forgotten me in the radiation room. Apparently her sister Nancy was at a doctor appointment and was waiting in the room for her doctor to return and he never came back and finally she looked out and everyone was leaving and they were closing the place up. So, I guess it's not such a far-fetched possibility after all. Thanks, Deb!

Hello... is anyone there?

Today was not so good in the radiation room. The computer broke down and had to be rebooted so I was in there, under The Mask, for almost 45 minutes. I was laying there and nothing was happening and nothing was happening and nothing was happening, then I heard one of the girl's voice over the intercom telling me they had to reboot the computer and I'm doing a great job. Great job, indeed. Only it started out bad in the first place for some reason... The Mask was feeling tight today and for some reason I was on edge from the get go.

After hearing her voice, I expected the machines to start moving soon, so when they didn't, and I was just laying there in the room with nothing happening I started to panic slightly. I would relax, breath deeply, and then kind of feel spazzy, and repeat... and eventually started to think they might have forgotten about me. Rationally I knew that was very, very unlikely, but like I told them later, when they finally did extract me from The Mask, your head starts to mess with you under that thing. I started to wonder how I could rip The Mask off, or at least start flailing my arms and legs and scream bloody murder.

Oh, and who did I see as I was walking back to the room?... my radiologist! So, I guess I have to believe my sister now.

Frosties, Noodles and Corn on the Cob

I had a really nice weekend, which went way too fast. First of all because there is no radiation on weekends, and then, on Saturday Allie and Erin came to visit. I sometimes still can't believe they drive! They brought us Frosties and they provided us with lots of entertainment, as usual. I still miss spending my days with them, so it is always a treat to be able to spend time with them--especially considering how busy they are all the time with school and friends and life. Of course we played that silly drawing game we always play!

Then in the evening, Jackie, Andrew, Sophie and Padraig brought us dinner from Noodles and Company. I had never had been there before. I ordered the Japanese Udon noodles which were to die for. Mom also made some corn on the cob, and Padraig had the time of his life sucking on a cob (sans corn). Sophie and I laughed our butts off when he started screaming when they took it away from him. At the end of dinner there was more corn on the floor than the table.

On Sunday Teri, mom and I went to see Jay, Alicia and the kids. It's crazy... we went down there last Sunday because Nik was going to go in for surgery on Monday (he ended up having it on Tuesday), and here we were only a short week later and he's home already and you would never know he had had open heart surgery. The only things he can't do are ride his four wheeler and do things like jumping and carrying heavy things and anything that might cause strain. Other than that he was the same old Nik. Right when I came in the door he wanted to sit on my lap and tell me all about the things he can and can't do. Anna showed us the Lego house she made--we couldn't believe she made it herself, but she promised she did. And the little one was insane as always.

It was good that Teri was driving because I was having a hard time keeping my eyes open on the drive home.

That Was Fun!

Nik left the hospital in record time and is back home with his sisters. What a trooper!

I was reading my new issue of Rolling Stone and pondering what is to become of me since I am not into vampires at all... what will I watch on TV this fall?

Anyway, this morning when I woke up my shoulder and neck were very stiff and a bit painful. I think I might have to learn a new way to sleep. I'm too old to do that.

Today at radiation (8 down, 27 more to go) was kind of fun because my wonderful sister Teri came with and went in to see how everything goes down. She watched them snap The Mask on then left the room with them and watched how they do the imaging and treatment. She said that my doctor came and watched. I don't believe her. But she insists that it was him. I've never seen him around there. Never.

She's so funny. When we were saying good-bye she kept saying something like, "that was great," or "that was fun", and then, "... well, no... you know what I mean." Yes, I do. Thanks for being such a wonderful sister, Sis!

On the drive home I asked mom if we could stop in to see Auntie June. I felt bad because I haven't been to see her in so long. We had a fun time talking about her Meals on Wheels meals, my hair, mom's hair, bruises on their arms and belly's, adult diapers, and then we had fun testing out her new grabber thing. Then her phone rang and we all jumped and screamed. Then we laughed about that. It was good to see her.

Cabo

It's Wednesday night already. I haven't been online since Monday--I know, it must be some kind of record.

Nik's surgery went well and you can read his update here at his Caringbridge site. This is him having a very green Popsicle. Soooo happy he is doing okay!

Today was a long one. It started at seven thirty this morning at the cancer center for my radiation treatment. I am definitely getting used to The Mask. Either that or my head is shrinking now. I actually think I've learned how to relax and make it more tolerable by making sure my shoulders are being stretched down as far as possible with the hand straps. This makes it less tight around the neck.

After radiation it was time to see my radiologist, who I see every Wedndesday after treatments. He always greets you with a handshake, which is lovely. And he always has on a gorgeously colored tie and shirt. His nurse today was another nurse that remembered me from 2007. I see familiar faces from then every time I go there.

After a short visit with the doctor it was back out to the lobby and signing in again on the paper sheet (not the computer, which I sign in to for radiation). I was scheduled to have a PET scan at nine. While waiting for them to bring me back for that, two women came in with a dog. They were twins, but one was a patient and the other was the owner of the dog. Right away when they came in, while her sister changed into her hospital gown (which usually means you're a breast cancer patient), the other sister brought the dog over to us and asked us if we'd like to say hi to her. Of course we did. She was a black and white border collie named Cabo (because they liked visiting Cabo San Lucas). What a sweet dog she was. We petted her for a bit and then she went back to her seat and soon her sister came out, but then soon went in for her treatment. After a while of chatting with the sister, about cancer and other things, Cabo decided she wanted to come back over to see me. I petted her and scratched her ears a while, then she went back and laid down to rest at the feet of her owner. A little later she did the same thing to mom. Then I heard my name being called.

PET scans are different from CT scans, though similar in that you usually have to fast (4 hours) and drink that delicious contrast mix. Pina Colada flavor today. Don't get the banana, I promise you won't be sorry. The contrast drink is a lightly flavored chalky concoction. For the PET scan you sit in a room by yourself, in a comfortable recliner and drink half of the bottle of contrast. Then the tech came in and gave me the Radiology Pharmaceutical shot. This takes time to travel through your whole body, so you sit in the room with the lights dimmed and drink the rest of the contrast and wait for them to come and get you.

When it's time, they have you visit the bathroom and empty your bladder. This was welcome since I had drank over sixteen ounces of water since waking up, as well as the whole bottle of contrast.

The PET scan is different from a CT scan in that you have to remain completely still and they wrap your arms up to your body, which help keep them still. This was not uncomfortable at all. At first I didn't like the head rest, which if you laid a certain way would come up over your ears. I adjusted so that it didn't do that. Your body goes through the donut shaped scanner and out the other side, then you are scanned in sections for about five minutes each section until your head comes out the other side. The PET scan is getting a more detailed and three dimensional picture. I don't really understand it.

Oh, the only crappy thing was that I had to take off my bra for the scan. You aren't allowed any metal at all, unlike the CT scan which you can wear a bra and pants with metal buttons and zipper, as well as jewelry. Though I had to take my earrings out for a CT scan recently, and usually if you have a zipper and metal button on your pants you have to slide them down around your hips. I guess it depends what part of your body they are scanning. I've had so many of these things I have lost count.

My blood sugar was low on account of the fasting and them wanting a low sugar for the PET, so I was a little shaky and hungry for lunch. I drove mom down to Hastings to meet her friend Rose for a trip to the casino, then I treated myself to some Culver's Cod fillets, yum!

P.S. If you are going to be at the Maplewood Cancer Center, please watch out for the goose poop in the parking lot!

Full Time Job

Nik's surgery was postponed until Tuesday--hoping they don't postpone it again. You would think they would realize that his family has to schedule taking off of work and arranging for someone to watch the other kids while his mom and dad are there at the hospital. It's not like major surgery is an appointment to get your teeth cleaned or something easily rescheduled. Oh well... just want it over with and for him to be okay.

We had two doctor appointments again today, so I took Mom out to her eye appointment with Dr. Rice, which she had scheduled for months, and then had to go back out to the Cancer Center across the street three hours later. It's a full time job, I tell ya.

Today's session was at 6:00 PM and they took me in almost right after I arrived, at 5:45 or so. Hey, I need about five minutes to mentally prepare myself for The Mask!

I was thinking my head had grown over the weekend because again The Mask felt super tight. When will I get used to this thing? You would think after having it on four times for fifteen minutes minimum, each time, I would be getting used to it. At least I took my deep breaths before they snapped it down this time.

They sent me to the other room today. There are two different rooms. I had been going into the one on the right. When I went in 2007 I had always gone in the one on the left... so it was deja vu today. I noticed it was cooler in this room. The tech said that he agreed and he talked to the manager and mentioned that the other room was too hot later in the day, and maybe it was because they didn't usually schedule late appointments for that room so the air conditioner might have been turning off at an earlier time. I hope that's the case and next time I go into the room on the right it is cooler.

I've been having some pain in my left arm and shoulder and that side of my neck. I don't think it's psychosomatic since I have noticed it before, and come to think of it, there were times before I found the lump that I felt pain there. It's not a sharp pain but more of a dull ache... the kind you might get if you hold something for a long period of time and you then put it down because you can't stand to hold it any longer because it hurts to. Does that make sense? But really, nothing too terrible to complain about that's for sure.

I am really enjoying the weather and though I don't really love having to drive so much, I am enjoying the beautiful trees with all the leaves and all the wonderful flowers people plant in the city.

No cancer stuff today, yay.

I have a cute Nik story relayed to me by Jay.

Nik makes me play catch with him all the time. I
showed him how to throw the ball up in the air and catch it with his glove,
and how to throw a tennis ball against a wall. I told him that I had to do
that all the time when I was growing up because my dad was older and so were
my brothers and sisters. He was shocked and said "you didn't play catch
with Romy? I play catch with her all the time and she's really good."

Hee hee!!! Love that kid!

Mom and I visited Jay, Alicia and the kids today. Why does it rain every time we go down to Hastings? Grrr! 

I brought bubble gum because the kids love it when I blow big bubbles and they smash them with their fingers to pop them. I have to say that Bubblicious bubble gum is the best for doing this because it doesn't stick to my face when they pop the bubbles, unlike the cheap stuff.

Miss Ellise was very intent on smashing as many bubbles as I could produce -- one time getting so excited that she jumped the gun and socked me in the face quite nicely. That kid has spunk.

Anna can now blow her own bubbles! Yahoo!

We went outside, after having some homemade pizza and some of that fermented mushroom tea for lunch (thanks Alicia & Jay!), to watch Nik ride his four wheeler. Ellise squealed with delight as mom and I cried our protests as he flew by VERY FAST.  Of course he had a huge smile on his face as he whizzed by at the speed of sound.

I got a little sample of what Alicia has to deal with in her youngest one. We were sitting on the porch, which faces out to the beautiful back yard, which is essentially a cleared area surrounded by forest, and Ellise was climbing on the rail right in front of me. There was a pot of flowers hanging off the top of the railing and Ellise picked one of the flowers and showed me. Then she picked another one and let me smell it. Then she went to grab another one, and I told her she shouldn't pick any more flowers. She picked another. I told her, "No, you better not pick any more or they will be gone." Sure enough she reached up and picked another. She didn't care how many times I told her to not do that. She picked the basket clean. She does what she wants to do! She is hilarious.

I hope the photos I took of everyone turn out. Nik doesn't understand why you can't see the photos I take on my camera right after I take the shot. I have to tell him that I have a really old camera and I have to get the photos developed first.

My Big Fat Head

I'm glad it is Friday, which means two days off from treatments. We're going down to Hastings to spend the afternoon with Jay and Alicia and kids tomorrow. I have a present for Nik to take to the hospital with him when he goes on Monday because I'm not sure I'll be able to visit him there. Nik is going to have his third open heart surgery next week. Brave little Nik! He's so precious!

Today's treatment seemed to last as long as the previous one, which was suppose to be longer than normal. I don't know, maybe I was expecting it to seem a lot quicker... but it wasn't. I was the last appointment of the day for the machine they use on me. Joe rushed out as soon as I got to sit up. No time to walk dizzy Romy out today, haha.

When they went to put the mask on today I asked them to take it off before they were finished snapping it onto the board. I hadn't really been given enough time to relax on the board and catch my breath. So, they took it off and I took some deep breaths and got myself ready. I understand they probably had a long day and wanted to get going, but I needed a minute to settle down and prepare to have that thing snapped down on me. Every time I have to wear it I am surprised at how tight it is. Today I wondered if maybe my head grew bigger over night because it felt tighter than ever. I sure hope it doesn't get bigger over the weekend!

Third time's a charm?

Not so much really. What can I say... I just really don't like wearing that mask. I had to wear it for an extra five minutes today. I'm hoping that tomorrow will be the quickest and that I won't have that same sense of dread I've been having when I first get it on. I tried to think about torture victims. That helped a little bit. Nobody hears their cries for help. I thought about Rosie Wirth (my sister-in-law's mom who also had to wear the mask). I know I am not going through a fraction of what she had to go through.

Yet I had all these complaints racing through my head... why is it so damn hot in this room? Maybe if I have them cut me some eye-holes it would be easier? Maybe a mouth hole so I don't have the mask resting against my lips? All really so stupid, because soon enough it was over and everything was fine again. I guess I am only human... but I'll try to do better next time.

My appointment was at 6:15 PM, which was kind of nice because nobody was there. Same time tomorrow.

Oh, by the way... I have a mission. A very serious mission. There is a TV set in the waiting room at the cancer center, and I have vowed that I will turn the station to The Food Network or Bravo or Animal Planet, or even the Golf Channel, if I notice that it's on Fox News, which it always is! Yes, that is my secret mission...

Radiation is my friend

Today I had my first radiation treatment for the lump thing in my neck. Don't ask me the name of it, I can never remember. On Tuesday my eye doctor asked me what it is called and I had nothing. I know the name of the cancer is Adeno Carcinoma but the name of the lump I don't have a clue.

When I had my planning session last week for these treatments, they made the mask I have to wear. (You need to wear this so that they can have a guide for where to point the radiation so it's the same each time.) They put the slab of warm wet pliable plastic over your face and shoulders and you wait for it to set and you wait for them to mark it up or whatever. They also take a CT scan, presumably to line things up, etc. Anyway, the fun part came when I was in the CT machine and started to feel panicky. I had been breathing with my nose only, so maybe that was making me light headed or maybe I was simply freaking out. The mask was warm, tight and constricting. I had my eyes closed. It was hot in there. I wanted it off.

That was not to be.

When I came out of the CT machine, the tech asked me how I was doing and I told her that I was starting to freak out. She sympathized but told me point blank that I had to keep it on for about 7 more minutes. She said she would stay by me and hold my hand for the rest of the time. Which was nice of her, and it helped. I started to breath through my mouth, as well as my nose, which also helped.

"They must use these at Gitmo," I commented, lamely. Bet she never heard that one.

When I was leaving she said that most likely my regular sessions won't be the fifteen minutes that I had the mask on during the planning session, but shorter. That was good news....

Flash-forward to today and what did the tech tell me? I'd be wearing the mask for about fifteen minutes. I groaned. She sympathized.

Her name is Erika, and she remembered me from 2007. What a sweetheart she is. I remembered her too. I also remembered Joe, who brought me in to the back where the machines are. Joe was also kind enough to let me hold onto his arm after my session because I got a little dizzy and almost tipped over (thank you big radiation machine for being there to grab hold of!)

I was surprised that today the mask was still as tight as it was last week. I thought maybe somehow it wouldn't be. Maybe it was the wet factor that made it so tight, but no, it was just as tight. When she said it would be fifteen minutes I sort of felt a bit of dread. I wondered for a moment if I could do this. Plus, before I came in, they gave me my schedule and I saw that I would be having 30 sessions. I didn't know if I could do this 30 times.

It was super muggy in the room, which didn't help. They snapped the mask on and right away I decided to make sure I was breathing properly. Deep and with nose and mouth. They took x-rays, so I think that is why it was fifteen minutes. I hope so anyway. I think the treatment itself is eight minutes. Thankfully, I didn't freak out this time, but it still felt like heaven when they took the suffocating piece of shit off.

Sitting up from the bed, which is basically a slab of some kind of hard back breaking material, I felt a bit light-headed... thus almost falling over on my way over to get my glasses. Tomorrow I will be sure to sit on the slab upright for a little bit before I venture off.

I've decided that it wasn't as bad as I was thinking it was going to be when I first heard Erika say "fifteen minutes" and when the mask first got snapped down. For the first couple of minutes I was thinking that this is finally going to be a test. This is really going to test me in ways I haven't been tested before. But now I have decided that I am going to think about people that have really been tortured. Those human souls that didn't have sympathetic technicians administering to them while suffering tortures of the unimaginable. Compared to that, this is playtime.