The Telephone Game

This next room is in the back hall, where all the good stuff happens: Team exam rooms and Whiteboard rooms. No one escorts you to any room at all. One has just learned that when your name is called, you go find your room. Fifty years from now I could still probably walk straight to whatever room number is called. During your "Transplant Stay", you are in so many rooms a day that it is now just an automatic response. Your feet just start walking.

The Clinic Team process is both interesting and infuriating. In summary, it is much like playing that old game "telephone". Before you have even arrived, your file has already been sent by your oncologist, which presumably includes everything medical that has happened to you since your last Hutch Visit. This assumption is ironic to me because it assumes that every doctor you see has supplied your oncologist with all your information, which is kind of funny. Second, the Clinic has sent your oncologist this huge long list of tests and procedures they want completed before your visit but with enough time to be completed dictated or read and formally packaged to arrive with enough time to be reviewed. It also can include other doctors' reports that they want to see. For the patient, not knowing some of these test results is a little bit like having that information held hostage. The patient also receives an exhausting questionnaire about their sysmptons.

So with all this information having been provided in advance, the telephone rings. First the patient sees the Team Nurse. She does her thing then leaves to go report her findings to the Team Primary Provider, who is typically a PA. A little bit later the Team PA comes in and goes over the same information the Team Nurse did, your questionnaire, and does a comprehensive exam. But questions are rapid-fire, which is difficult for me. As many of you know, I now need some extra time to answer many questions, have difficulty remembering things, especially dates and timelines, and often the words I need escape me. So we have a pretty good time together...... The irony is that all the answers and dates and timelines and information is usually in their records MULTIPLE TIMES. So this exercise is rather embarrassing.

At this point in the day, I have now seen the GI PA, the GI doc, the Team Nurse, and the Team Primary Provider, all of whom do what they need to do, get whatever info they need, and pass it along to the next team player. The telephone game just keeps going. But no one leaves a message with me about what is going on.

Now that ALL this information has been summarized from one party to the next, going up the food chain, the seas part and the Team Attending MD enters. She brings with her a visiting doctor and asks me me if I mind that she be present. Hey, I am all game of seeing how many people we can shove into this little exam room. We total four of them, one of me. The psychology of this is interesting, as the four of them stand and peer down at me, naked except for that typical flimsy exam gown.

My Attending is the last person to answer the telephone and to my amazement, asks many of the same questions already asked and then starts making pronouncements of what is what, do this and do that, based on the the repeated information that has made it to her. This next part is much like the process at the dentist: the dentist does his exam while his assistant is checking the file as he reads off the numbers and condition of your teeth. Do you know what I mean? She is the head of the bunch who is going to summarize your medical conditions and not really talk to you about what these things mean and how it will affect your life. This is the Big Show time and it is clearly their show!

It happens fast and furious and includes alot of medical terms I don't know. She mumbles alot and the Team Nurse and Primary Provider are shuffling through my file looking for this or that. I am asked what symptoms are the hardest to deal with and we discuss this a little. A little but not much. I have also brought almost two pages of questions, some quick and easy, some a little more in-depth, that Craig and I have put together. But it is their show and the visit unfairly centers on what they want bto know, not what my life has become. (Hmmmm, reserach data?) But the time is edging towards 4:00, and the Transplant Clinic becomes a ghost town at 4:00. I have the distinct feeling that despite why I think I am there and what it took to get there, we are just about done. My next visit date is now being discussed as well as how we can get authorization for some tests that they want done the next day at the Hutch. I am clearly running out of time with the transplant gurus. I know it and they know it.

The rest of the room 21 story is not pleasant, for a number of reasons. First and foremost, it is almost directly stated that everyone else on my Health Care Team don't really know what they are doing or at least don't do it as well as SCCA. Really??!! I came all the way over here for you to insult me and the people who actually take care of me? If you disagree or want a different treatment regimen, it seems the most professional way to achieve that is to contact my hometown providers and discuss it with them. I was livid that SCCA would insult or demean me or any of the doctors here that have worked hard to help me, see me regularly, and have really been there for me. And while I recognize that that there have been many times that doctors here have consulted with those at SCCA, it is exactly my doctors here that I see all the time, prescribe the meds I need, answer my calls at night and on the weekend, and who genuinely seem to want to help me and make me as better as better may be. I think we would all recognize that the people at the Hutch are the supreme experts in transplant science and care, but they are not the ones who take care of you once you leave Seattle. They need to support the hometown doctors by offering their support and expertise and not dismiss them because they are not transplant experts.

I was pissed. And many of you know, once I am really pissed off enough, I shut down. Done. Time to go. And after all, is it after 4:00.

"Robertson, 29"

So wonderful to be back home! Yesterday was full of "normal", which I like just fine. And of course my OCD required me to try to catch up on everything in one day. Guess what? Still can't do it. And boy am I tired! Too much activity of late, of all kinds. Must remind myself constantly that my expectations are too great and then I constantly feel the sadness and guilt that accompany this awareness.

Back to the Seattle Trip..... I've been thinking about all the signs that tell you you that have arrived on the SCCA/Fred Hutch Campus, or where to turn in, or how to distinguish the research buildings from the Clinic. And I realized that there are absolutely NO signs on how to get out, or towards a direction, street or freeway. There are also perilously few exit signs in the Clinic building. Same thing in there: lots to tell you how to get it and none on how to get out. I see a theme in this. Really, I do. It is quite the replication of having cancer, or being chronically ill, or stuck in the quagmire of transplant. Lots about what can be done to you and not so much of what will happen after that. A chronic state of being stuck. I see both irony and sadness in that.

So I go through the front doors of the Clinic (yes, as some have asked, I was by myself), and dutifully proceed to my first "appointment" on my "itinerary". Where else would one start their day but at "Registration" which is really med speak for Finance. I present appropriate personal id, as if people are actually trying to sneak in, and confirm that I do still have insurance and that I am dutifully making payments on my tab. I am given my green card, which looks like a credit card, without the magnetic stripe, that I present at whatever departments I am visiting. They swipe it, which I guess is how they can prove to the insurance companies being billed that I was actually there. I have a collection of green cards. Kind of funny.

Next stop is the Chapel. I am alone and can pray aloud. The irony is that the chapel is really just a dimmed office with wooden floors and nicer chairs than in the exam rooms. There is no indication of any particular faith, which I guess is the way that in today's world it must be done. As sad as that is, I am ever grateful to know my God is everywhere, and He doesn't need anything other than my inner voice to hear my prayers.

It is time for Floor 6. Transplant Clinic is its primary nickname. Not fun, at all. Bad memories. Great views of Lake Union though. I present myself at Reception, and hand over my green card. It is recorded and returned. I know the drill and I know where the comfiest chair is, so I make a beeline. Ah, home away from home..... Mr. Reception calls back to the Patient Flow Coordinator, who confirms my assigned room is ready. Shortly, "Robertson, 29" is announced to the waiting room. And I am off to Room 29!

I had some fun in there. I really did. I hope you enjoy these pictures and my silliness as much as I did. I am quite sure that the Clinic won't.... And I remind myself, for the 10000 time, that they are really serious here.

But I also share these exciting pictures so you can see what one of their rooms really does look like. My first impression is that the exam table looks wet. At some point I get bored enough to lie on it and take a self-portrait, which I hope you enjoy. The room is quite techy but I never see all its glory used. The calendar is pretty big for the purpose of just counting days. So I add on the September 20 square that it's my husband Craig's birthday and ironically that I am here. At least it now looks like a real person had a real use for the calendar.

Bored, waiting, what to do next? Don't ask why I had this souvenir from my flight over, but it was fun. I wish I could find out how long it takes for someone to notice it. A little like I Spy, I suppose. But I do truly hope that some other patient saw it and smiled.

Room 29 is to be my exam room for GI. I see the PA, then he goes and reports his findings to the GI Doc. Then he comes in and lists a number of things that can now be wrong with me, and tells me I need a procedure and then is off to consult with my Clinic "Team". I decide that the artwork in Room 29 is not soothing me and I am happy when it is announced "Robertson, 21". Mr. GI Dr. hasn't returned yet, but we must make patient flow goals. And I get out!

I Went

It may have taken everything I had inside, which there's not much left, but I actually did go to Seattle. I got back late last night, but early enough to fall asleep snuggling with my boys. It now seems like I was gone a very long time, in a very far away place, and I keep thinking it's Monday. Well, at least it's a little change-up.

To all of you who have posted, emailed, called and texted to offer your support and prayers, it worked! I do sometimes feel that without this incredible energy sent to me that perhaps I wouldn't go through with some things. That's not coming out right, but I think you know what I mean.

Such a quick flight over, which is preferred by control freaks like me, and voila, I am in Seattle! My sister-in-law, Angie, picked me up, after I figured out I had told her the wrong airline, and we were on our way in her adorable blue Bug. Yes, I punched her arm on behalf of Craig, John Paul, and Brennan. As we were driving along, we passed a Sizzler. A Sizzler!!!!! Hadn't been to one in twenty years or so (scary) and it turned out that her husband, Jim, also ranks the Siz as a fave.

As we visited at linner, it was like avoiding talking about the pink elephant in the room. But it was nice to see them and it was generous of her to play taxi and ensure I was fed. It was time for me to go and check in at the hotel. I was crashing. I was exhausted and I was turning inwards (one of my worst qualities) as I recognized what I was actually there for.

I was asleep as soon as I had turned the tv on and laid atop the bed. A couple of hours later I woke up and continued texting my friend Paul, a former Spokanite. The plan was that i would meet Paul and his wife, Gina, for dinner. But it was clear that I was zapped and socially empty, so getting together was put off to Monday.

It's Monday morning and I have been up for hours. I dress in my armour clothes and make-up. It is my feeble attempt to not look sick and to level the playing field. Fred Hutch has been calling Craig's cell phone to add appointments onto my patient "itinerary". Finally they realize it would be best to call my cell, the schedule is changed and my day starts earlier. The shuttle at the hotel explains that I would have to take the shuttle downtown and then be dropped off at SCCA on the way back. I start walking.

The SCCA/Fred Hutch campus is really pretty incredible. It takes up several blocks in length and width. The architecture is cool and I love that all the buildings are red brick, balancing a modern design. Lots of trees, grass, bushes. It's either green or red no matter where you look. But they do have some signs just in case you have wandered into Cancer Land unintentionally.

I pause to take a photo of myself, as I am stepping onto the Clinic grounds. So do I look different than my self-portrait before I left the hotel? I look at the building and those damn doors. They are open at first glance, some eery way of telling me to come in. Then they are closed again, yet I know I have to go down there and make them open again, for me.

In fact, for you doubters, I walked in.

I will write later about what all the fun I had. But I am both short on time (time to pick up the boys) and I am also hoping I can convey what it FEELS like, not just what happens there. It's not just any building or any doors. You've followed how much I didn't even want to go to Seattle, just a City. It all becomes more than just a place or a thing. They trigger that "something" that we try to swallow down as far as we can and admit to no one.

Going Deep

I finally gave up trying to sleep at 3:00 am. My body screams for the rest. My emotional tank is near empty and needs to refuel. But my brain, my mind, my soul understand that this trip and the next few days will largely shape my life. If not forever, then at least until I have to go back again.

Nothing is mellow at SCCA. My favorite summation is, "They are serious.". It is completely unreasonable to expect all good news, no matter who you are, it seems. And I know my visit will be a hard one.

It is insane to realize that a place and a small group of people will tell you what your life will be. Typically, for problem children like me, I get a 3-month, a 6-month, and a 1-year projection. There is the white board room where statistics and odds are drawn out for you. You learn what percentage of the transplant patients that have made it this far are going to die in the next year. Year two odds were one in three. That gets your attention.

I guess they have to tell you ALL the bad things that might happen to cover their butts. Yet I am one person out of howevere many they will see that day. Once our white board meeting is over, they simply erase the board to ready for the next scared patient. But my whiteboard remains seared in my mind and affects perspective on literally everything. I have thought about stealing the board markers. Alas, they probably have more.....

With my many complications and various situations, I don't want to go to the white board room this week. I am scared.

But now I am going to ask that you not be alarmed if I don't write in the next few days. All it will mean is that I am exhausted and simply can't do anymore. Then again, with my sudden writing spurt of the last week or so, you never know. I also ask that you pray for me or meditate for me or send good energy and thoughts my way. I need you.

I am going deep into SallyLand. I have no weapons. I have no money for the ransom. I have already been here too long and I WANT OUT.

The plane leaves in four hours.

I still don't want to go.

And I'm Off!

I leave for Seattle in the morning. I still don't want to go. Seattle Cancer Care Alliance (SCCA) and Fred Hutch. No one wants to go there. It is a place of last resort. Death is palpable.

I still don't want to go back there. I accept it is necessary but it seems they could do much by phone. Instead they love to issue command performances.

Everything there is complicated and my brain just doesn't work that way anymore. Everything is stressful. There is nowhere, other than the chapel, to go where there aren't as many people and it's not so loud. But as you can guess, the strongest negotiations take place in there. And it's right across the hall from Finance. And nobody wants to go in there.

I still don't want to go. Unfortunately I need their help and it's their game.

My Pride and Joy

Thank you to everyone who left a comment, sent an email, texted, or left messages about the pictures I posted of the boys's first day of school. It seems impossible that they are five and seven and 3/4 (John Paul would never forgive me not adding that detail) and in school all day. Again, I lost that three year time period and still can't reconcile the gap.

They are beautiful or I guess I should say handsome to not embarrass them. Both are so photogenic and I love taking pictures of them. Their personalities seem to come through their pictures. Or perhaps it is because I know them. Regardless, they are exceptional to their Mom.

They are boys, in every sense of the word. No longer little boys, they are running at full steam into this next age phase. I was speechless when someone told me that John Paul is actually a pre-tween. Still can't swallow that one! And Brennan is bigger than most of his classmates and certainly has the physical strength over John Paul. In fact, Brennan is currently learning that someone is a little bit bigger and a little bit stronger at school...... I will keep you posted on that one.

They are themselves, distinctly Brennan and John Paul. I see much of Craig and I in both, and then many other characteristics of extended family in both as well. It really is fascinating.

I can honestly say I like them. That may seem a silly thing to say. My love for my children is unconditional but that doesn't always mean that a mother likes her child as well. I am fortunate to say that I do. Or at least most of the time.....

The greatest accomplishment, the greatest joy, my most important footprint that I will leave on this Earth are John Paul and Brennan. I occasionally get glimpses into their futures and know they are destined for full lives. They are overwhelmingly my pride and joy.

Back to School

Holy smokes! John Paul has just started the second grade and Brennan is in Kindergarten! It genuinely doesn't seem possible. I have lost so much time from being sick that it literally doesn't seem possible. Especially regarding B. In my mind he is still a toddler, the little guy I knew so well before I was sick. Life has tricked me....he is now in his uniform and off to all-day school.

Last night was Back to School Night. The principal gives an overview of the school, different programs, enrollment data, and the school finances. All Saints remains blessed by the many generous supporters who ensure that we are not just getting by but that each year some aspect of the school receives some major overhauls.

We also have parishes and families that ensure that all children seeking a Catholic education will receive one. No child is ever turned away due to finances. Now that is amazing. How blessed we are!

Okay, okay, I know what you really want to see and hear about are the boys. so here goes:

We got up ontime, remembered to bring everything we were supposed to, remembered to eat breakfast, and still had some time at home to take some pics. I kept staring at Brennan, thinking, "Why is he wearing John Paul"s uniform?" And I marveled at how handsome and grown up they both are. I am a proud Mama!

We made it to school on time and John Paul, Craig, and i got Brennan to his classroom. He was so shy! It amazed me when as a parent you are just sure how your child will act. And the you get the opposite! He has the incredible Mrs. Thielman as his first grade teacher. John Paul was in her class two years ago. She and her husband, and their dog Ruby, had so graciously brought the boys over to Seattle to see me during Spring Break. So she is a familiar face and person, which helps. She wisely placed his seat near her desk..... Suddenly, he decided it was time for us to go, and off we went!

John Paul also has a wonderful teacher, Mrs. Eber. We have heard only positive things about her and he was pleased that he was placed in her class. Now going to his room was a bit different. Once we found his spot, his backpack hook, and where to put his lunchpack, we were told we should go. Really?? In second grade? He is excited that he sits with his buddies. Craig and I wonder how long that will last.....

In another post I will share about how school is going, but the high deman for first day pictures and info demanded this be done first! And for a change it is a nice, positive topic and post!

This Blog

Wow....this blog needs an overhaul! Over the next couple of weeks you will see alot of changes, from appearance to content. All suggestions are welcomed!!

Also, if there is anything you'd like to see or any topics you'd like covered, let me know. And feel free to do so anomylously.

And for you techies, if you know I am off the mark or have ideas for upgrades, please let me know.

Apparently, when I am signed in to the site, you will not be able to access it. Kepp checking back!

I also am going to email an invitation to come back to my site. If you want someone to be included, or maybe yourself, please send me an email address, either as a comment here or directly to my email, sallydrobertson@comcast.net.

Definitely time to update some pictures, bio info, and data.

Please visit SallyLand again!

Time

Just about an hour ago I realized that it is Thursday, not Wednesday. You'd think all the many clues in the day would have triggered this date correction, but I missed them. I have started noticing how often I look at the clock and then look outside for am/pm adjustment.

The worst thing about clocks is that they seem to move either entirely too fast or completely too slow. Each night when I wake up so many times, I always ask the clock to please at least give me an hour until I am looking at it again. How silly is that? Ultimately I end up with revolving time chunks. There is no clear deliniation between am and pm. It's all the same. I live in time chunks. Yes, that is the way to describe it.

The "New" Normal

One of my friends (thank you, Nancy!) commented on my blog about having to learn "new" ways of doing things. She was absolutely right. We have gone through many "new" ways as my health has changed, as my energy has changed, as my abilities have changed, and so on. While in Seattle for transplant, they talked alot about "new normals". They encourage both the patients and the caregivers to prepare for this and in fact, there are many "new normals" while still in Seattle.

However, the general consensus seems to be that when the patient comes home from Seattle that he or she is now well. I mean, they must be well to come home, right? Life should pretty much be as it was before. The expectations and pressures put on me, and that I put on myself, to be fine, tbe like I used to be, to just be freakin' normal, were huge. I failed every test of being fine and normal. It is like banging my head against the wall every day. It is incredibly lonely too.

The problem is that I am not who I used to be, I don't really have a "new" normal. My life exists in twelve hour chunks, basically. I no longer commit to anything because too often I end up sick and break my word and commitment. Sometimes planning even in a twelve hour stretch is risky. An example is being out to dinner at 7:00 pm and being in the hospital at 4:00 am. (Meningitis. Who knew.). I am rarely on time. I rarely remember the names of people I meet. I have lots of alarms set because I literally can forget the really important things, like picking up my kids. I am no longer smart. My body is destroyed, inside and out. My feeding tube bulges out of my clothes. I am afraid to cook when I am alone in the house because I might forget there is food on the stove or in the oven. At least I finally have hair.I won't bore you by continuing to list all the changes that I have to "accept".

I don't think my family is thrilled about all the "new" things either. All of us have exhausted ourselves to just get to today. When is the proverbial day off? How do we learn to just accept it? We didn't know it would be like this. And that there would be so many new problems, ordeals, changes, and traumas. We are tired.

Friendships get twisted, tried, and tested. Because a friend can move on more easily, my heart has been incredibly hurt by some friends who have simply had enough. Apparently it is very draining to be my friend, to get swallowed by all this crap. . The strength of many relationships have been tested and sadly, some have gone by the wayside. Part of me understands, the other part just cries and gets angrier at my "new" life. My family, unfortunately for them, is stuck with me....

I think you get it. I could quite literally compose a very long list of how I am "new". Even thinking about it depresses me. In fact, I am depressed alot of the time. I can't stand the "new" person that I am. Not that the "old" me was perfect, but I want what I had back. Please put my body parts back. Please put my health back to pre-cancer days. It was scary enough then..... Please give me my mind back, my intelligence, my sanity. Please pull me out of this dark pit. I hate this.

I guess this is my "new normal".I am in grave internal conflict for feeling this way when other have already died from pre or post transplant issues. It makes me feel ungrateful. And the odds are that one of every three patients who make it to year two post-transplant die. I feel guilty that I am alive while others continue to die. But I would imagine their lives weren't particularly pleasant if they declined so significantly that it lead to their death. The counselors say it is survivors guilt.

But I guess that ultimately what I am trying to say is that this sucks.

"How Are You?"

How are you? How many times a day do we ask this or do others ask this of us?

Usually the person asking, including ourselves, doesn't really wait for or expect an answer. It seems just part of a dying social etiquette. And usually the answer is "good", "fine" or "okay". How often do we match the answer to the person we are speaking to? This seems to only occur when the answer is something unusual, something that doesn't just flow with what the ear expects to hear.

If the person rates their status as less than good, fine or okay, we may momentarily pause to look the person in the eye and ask "What's going on?" or "Are you okay?" Generally we don't put down the bag we are holding, nor shut the open car door, or stop walking and turn around in order to focus on the person who has just failed to answer the benign "How are you?" question properly. We are looking for a very quick description of the problems faced, a brief reason why things are not fine, a condensed explanation of what is wrong. More often than not, once the other person speaks these brief replies, we are back to what we were doing, with an airy "I hope your day gets better" or a "Let me know if I can help".

Crazy, isn't it?

It is definitely easier to go about one's day without knowing if the people in our lives are "okay" or not. We dole out our energy based on how important the other person is and whether or not we even heard the response anyways. Usually there is no opportunity to completely stop and place our focus on another. The day is long, the list is long, the commitments are too many. So actually being able to stop, look the other person in the eye, and LISTEN is rare. Maybe we don't necessarily want to know. Then we might have to do something about it

Another Sleepness Night

Part of the problem of not knowing the day or the time or what I am supposed to be doing and when is that I get very little sleep. This has been going on for many many months. Craig and I think it is likely the result of some med or combination of meds that I am taking, but which one? Currently I take 32 pills a day, plus two medication patches that I switch every 3 days. So, really, how would we begin to figure that out?

I typically won't remember what I did a few hours ago nor what I am supposed to be doing a few hours from now. I frequently don't remember what someone has told me, particularly the details. I write alot of things down in a notebook in my purse or on a notepad at home. Unfortunately I often forget that I have even written something down. My best method at this point is to make a pile of all the notes I have written down and then go through the pile. However my piles of "Need to Do" continues to grow. I try to prioritize and then I get confused and start it over. Those of you who know how OCD I am will certainly know that this "system" drives me crazy!

I do have the huge wall calendar and my Palm and I try to put things in both and and an alarm in my Palm. This seems to be the most effective method. But it does absolutely nothing for relationships. I come off as though I don't care enough about what someone has told me to even remember. This simply is not the case. I just don't remember. I don't remember what was told to me nor what I said to you.

I know that my chronic lack of sleep must have a great deal to do with this. I do believe I have chemo brain and cognitive damages and that they are just amplified by tiredness. I can fall asleep anywhere, I just can't stay asleep. I have tried all the typical techniques, plus every sleep medication on my health insurance formulary list. My doctor has prescribed a medication not on the list, which has been in appeal for over a month. Great.

Usually, time is a snippet in a huge long line of time. I go to bed readily and fall right to sleep. But once I have gotten up six times, I stop trying. Or when my sleep periods are only fifteen minutes before waking up, I stop trying after four periods. When I wake up, I am awake. Not the kind that one wakes up and rolls over. I am wide awake.Almost every day I struggle to stay awake and avoid naps for fear I won't sleep at all at night.

I have no doubt that the lack of sleep affects pretty much everything else in my life. We all know that when we are too tired everything gets amplified. Yuck!

So here I am writing again while the house is still quiet. It is a lonely time.

Ground Hog Day

Do you remember the movie "Ground Hog Day"? Or that Adam Sandler movie that I think is called 50 Dates? Anyways, the theme of both movies is that each day is repeated over and over again, as the main character has no memory of having done the exact same thing yesterday, and the day before that, and so on. I feel I am in my own Ground Hog Day.

Because my grasp of time is so very limited and confusing, the days literally blur together. It is a very odd sensation and at times really scary. Often enough I don't know the day of the week, what obligations and commitments may belong to the particular day. The difference of am and pm can easily get lost. Where do I need to be and when. The same for the kids. I often don't know what month it is. I have even had trouble knowing the year.

As you can imagine, this memory deficit is incredible maddening and usually acutely embarrassing. I do my best by taking cues from the people around me, what they are doing or talking about or referring to. My boys are an ex cellent trigger for filling in the blanks. Craig's leaving for work and coming home are hude time placers.

I wrote yesterday about alarms and lists. Sadly, this is really true and what probably allows me to even function. Craig woke me before he left and then I have a bedside alarm set and the my cell phone alarm set in another room. So far this triple wake-up call is working.

My heart and soul are devastated by this loss of memory. I used to be so organized and very on top of things. It is an insult to a trait I was so proud of to lose it and so publicly. I want my pre-everything brain back.

Just to make it all even more fun, I often can't find the correct words. My brain heads in the right direction but then they are stuck. And for more fun, sometimes my mouth is moving to say the word and no sound comes out. It sounds like a severe stutter, with my mouth moving and only guttural noise coing out. Nice.

I feel doubly betrayed. I know my body doesn't work, but my mind too?!

Then I feel like a selfish ignorant person as I recognize some larger than life things
1. Some people can't speak at all are completely handicapped in their mental abilities to even do what my limits are.
2.I am alive. Isn't that enough?

It is all a matter of perspective. Someone always has it worse and someone always has it better. But the honest truth is that I hate this. I used to be smart. I was prepared for so many losses in my body but not so much for long-term intellectual losses.

Can it get better? Maybe. Maybe not. It's a wait and see item in the oncology world. So far mine has just gotten worse.

I am just going to say it, with the caveat that I may unintentionally offend: I HATE FEELING STUPID.

What is your name? Your child's name? It's nice to meet you for the fifth time. What day is it? What time is it? Where do I have to be and when? Don't let the boys be late for school. When the alarm to pick them up sounds, just go then, or I will lode time again. When was the last time I was here? Who was with me? What did we do? I swear you didn't tell me that. I am positive I told you that. How much money is that? Will you please count out my change again? What is my PIN? How much was that? Will you please repeat what you are saying in a different way? When did we last talk? What did I do yesterday? What was I doing two hours ago? What's next on my list? Why am I calling you?I'm sorry....I don't remember the other four times we were introduced. Shit, I forgot about the food in the oven. Oh well, crispy is good. Make sure to set a timer to remember that the pasta is boiling. But as long as nobody touched the overflowing pot, we can always just start over.

Do you kind of see how poorly my memory and mind are now working? If you know me personally, is this insane or what?

Alarm just sounded to go to Oncology so I will end my rant here. Let me know if you have any questions. I have decided that if I am going to start blogging again, it can only be with the blunt and honest truths. Read it if you are curious, or ignore it if it is all just a downer. But this is the truth of SallyLand.

Today

Apparently it is Sunday, September 12, 7:15 am. My computer told me this, as did my cell phone. It is not dark outside and it is not light outside, so I know it is either early morning or early evening. Everyone else in my house is still sleeping, so I will go with morning. Craig's truck is still here so he has not left for work. So either he has the day off and I need to get my kids up and ready for school or it is a weekend morning. He was at the kids' sports games yesterday, so I'll go with Sunday. It is cool outside, that nippy air that only comes in fall or spring. The kids just went back to school so again and yesterday's sports were soccer and football, so it must be fall.

I look at my wall calendar. It is really meant for an office but I needed something I can literally write every commitment and event on so that somebody, including me, will know what the day holds. Who needs to be where and when. Yes, I am now certain that it is September 12, a Sunday. I am also reminded that John Paul will visit the children's choir practice this morning at 9:15. Mass follows at 10:30. The NFL game schedule will likely shape the rest of the day. Oh, we have invited some friends over to watch the games.

Okay, so build out from here. John Paul will need a ride to choir. I will bring Brennan with us so the three of us can then go to Mass. The three of us need appropriate clothing. Have I done the laundry? I just checked the hamper and it is full. And my stairs to the basement are covered with more laundry. How convenient this laundry chute substitute is. Quietly I will check closets to confirm there is something to wear. And now I know I must do laundry today. I need to clean off the stairs anyways because we are having company over.

We will drive home and then I must remember to feed my family. Even though I won't be hungry, they will be. Eventually someone will beg for food and then I will know to make lunch. What time are our friends coming over? The calendar doesn't say. I will make the embarrassing phone call to ask and to ask if we have made plans for lunch, snacks, or dinner. Someone will complain that they are hungry at some point, so perhaps I will skip the call, wait for them to show up, and wing it. This will save some pride. I can always drive over to Albertsons once they get here and I have an idea of what we will need.

I also learn from the wall calendar that today is Grandparent's Day. I smile as I think about the grandparents in our lives and my heart fills with love that is mixed with sorrow. I also have a chuckle over the complexity of this day of honor, the result of mixed families. I never got the boys' cards finished so I had written all our grandparents earlier this week. Thank goodness I had made a note to myself about this special day. Currently my phone says I have 473 notes to myself, things important enough to make it to the list. I am quite sure that many important things are on that list. But I am grateful I have somehow gotten this one right. We will call my Mom and Dad, Craig's Mom, Craig's Dad and Step-Mom, and Craig's first Step-Mom. We will also call Craig's Grandmother. I make a huge note and tape it to the kitchen cabinet door so that I will remember to make these calls.

It would be helpful if Grandparents' Day was a little more promoted. Perhaps that would help me to remember. Maybe not. I should be able to remember this holiday regardless.

The fact that today is a Sunday also heralds a number of other things I will need to remember. Thank goodness that I have made a list of what must be done on every day of the week. It is much easier to use this checklist. I must also confirm that multiple alarm clocks are set correctly for tomorrow. Perhaps this week will flow more smoothly.

I will review the calendar and To Do Lists for this week, today and each day. I have set my phone alarm to sound for all scheduled commitments, from taking my kids to school, to doctors appointments, to sports practices, and all the inbetweens. Once again I will look at the overwhelming list of things I would like to get done and accept that I won't. I begin my short-list of what has to be done. I add a few hopefuls too. Most of you will know that this OCD trend has always been there. What you may not know is that it is worse, or perhaps easier, when it is simply impossible, or I forget.

I am supposed to go over to the Hutch at Seattle Cancer Care Alliance next Sunday. I have yet to firgure out care for my children, transportation and adult supervision before and after school, lunch ingredients, sports practice rides, and so on. This goes on the priority list of course. I really don't want to go to Seattle, nor can we afford it. Can't I just skip it?

It's now 7:45. It is still the morning of September 12, 2010. Today will only happen once. My calendar says it will be a good day. I hope so. I would rather remember the vague but certain conclusion that it was.