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.

Happy Belated Mother's Day!

Happy Belated Mother's Day to all of you Moms who might visit this site! I have been incredibly blessed to have the wonderful women in my life who through both example and tenacity have shared their love with me. I agree that a woman who gives birth is not necessarily a mother. It is a certain spirit that a woman possesses, even if she has not given birth herself, that makes a woman a mother. It is a unique sixth sense, a silent understanding, the gift to discern. These are some of the quailities that a mother possesses, along with a fierce and loyal love. I do believe that any person who has not been a mother, by the act of giving birth or more importantly by choosing and committing to that bond, cannot know what being a mother is.

Without a long life story, I can summarily tell you that my mother has literally been the wind beneath my wings, my entire life. At times I knew she was carrying me, loving me enough that by her sheer will I would make it. At others, even when I questioned if she was there for me, her guiding hand and absolute determination that I would keep going moved me forward each day. Even our closest girlfriends can be gone in an instant, gone the bonds we were sure would be sealed forever. But it is only a parent's love that has the ability to be truly and genuinely unconditional. Arguments occur, disagreements happen, life happens. But my mother has taught me that true unconditional love can and does exist.

Are you familiar with CNN's Heroes campaign? Or the MLB's hero campaign? I always nominate my mom because she is the most remarkable person I know. She has given at every stage of her life, nurtured and been driven to improve whatever is around her. Her "golden years" have only amazed me all the more, from her community activism to her incredible journey fighting for every inch back from a series of strokes.

And she has cute clothes.

Thankfully my mom had the good judgement to ask her good friend Denise to be my Godmother. Imagine the pre-baby Bay Area fun life of the late 60's. And the same woman who stood for my baptism was forty years later standing for my Confirmation and First Communion. A constant through every single year of my life, Denise has taught me how a woman can choose to be a mother. Of couurse it helps if the child involved participates........

I sign off with a heart full of love for my Mom, my Godmother, and the many other women who have been in my life who shared their mother's love with me. We uncannily seem to know that we each have to make it. We will find a way to help each other see another day. Because only a mother knows instinctively that there is no other choice. We're Moms!

House Arrest

Once again, I am on house arrest. I lost my license, due to medical, mid-April. The loss of freedom is immense and the isolation suffocating. I had forgotten just how difficult it is to try to be normal when I am not allowed to drive. Perhaps my greatest loss is not being able to drive my kids to and from school. It is one of the few acts of normalcy I had as their Mom. And to completely rely on others for the boys' rides, the market, my plethora of doctor appointments, errands, picking up meds, you name it. It absolutely crushes me to have to ask for help again and on such a large scale.

The wonderful and affirming part of my current house arrest is the incredible friends who organized my life and claimed their days to be my personal taxi. I asked Steph if she could provide school rides for John Paul (She drove him every day last year). Next thing I know, she has my schedule covered too. Let me reiterate. Not only does she secure the kids' rides to and from school, but she secures commitments from other school moms to cover my rides. Incredible. But those of you who know Steph won't be that surprised.

A special shout-out to these generous Moms who didn't ask why, only when and where. It overwhelms me to realize that we really are not only school moms together but friends. So Steph, Lisa, Bridget, Michele, Liz, Ella, Mrs. Barnum, Emily, and Mia,and anyone else who may be on the back-up list, once again you have saved me. Thank you.

My special bus application is pending. Undoubtedly it will be helpful. However, the kids are not allowed on, so it will not help with anything that may involve the boys. (Did you really think I was about to say that I was hoping to take them to and from school in the bus????!!) Anyways, it can take up to two hours to get to your appointment, and quite frankly, it will be emotionally excruciating to take that next step.

I find it interesting how difficult it is to have to receive the help. And I didn't even have to ask for it! It is one thing when you need some short-term help. But my need seems to keep going, and going, and going. It is also hard to recognize that the same people who are at the ready to help now have also helped in the past. A sort of double-dipping, if you will. I have been told in very firm, and no uncertain terms, that I must learn to accept when offered. And that my turn will come to give back. I have also received hints that one should graciously accept when others step forward to give of themselves. I am so grateful, yet embarrassed at the same time. I honestly thought that by now, it would be my turn to help others and to pay it all forward.

Despite all the incredible help there is still a part of me that feels like all that is missing is the chunky ankle bracelet. Because I can't go about my business alone, I feel very bare that others now know every little bit of my business. Does that make sense? I have been hiding again since Seattle (duh, like you hadn't noticed I was up to my same old cocooning tricks) and then suddenly it's all back in the open to an extent.

I have lost the ability to communicate what I am trying to say. And this too, is nothing new. Just getting worse and worse. My concentration continues to decline and my memory gets worse and worse. Add to the mix some confusion, and you get Sally.

As much as I would like to sign off now, the big pink elephant is still in the room. And if I am going to try to make a comeback, I might as well start now. But ugh, the truth can be so hard! And often it seems like explaining what is going on now is difficult because I didn't share what happened then. So please be patient with me as I try to explain things as best I can without going back to March 8, 2010, from when I last posted about remission.

On April 15, my oncologist, at the direction of Neurology, informed me that I am no longer able to drive. Thankfully, I was allowed to promise that I would not drive and at this point, because I am being 100% compliant, State Licensing has not been formally contacted. Knowing what all is at stake, I made my promise from deep in my soul. I have little left to offer than my word, and my word is true. If Licensing were to be contacted, I would legally be unable to drive for at least six months after I am found to be on a successful treatment regime. Clearly, it is in my best interest to keep the promise I have made, albeit a very heavy one.

Okay, the elephant is still there. I have experienced several "episodes" of yet undetermined origin and definition. I have called them seizures, as that is how I would describe them. There are some other possibilities now on the table, but a neurological cause would seem the most likely. So until I complete the neuro tests and see the neurologist and get cleared to drive again, here I am. (It is a very long story why all of this is taking so long but unfortunately my life is determined by their pace, not mine. SO FRUSTRATING!).

However, when I had my original Neuro consult, the doctor had told me that I could still drive, at least until we knew what exactly was going on. But that doctor quit without notice and the new neurologist adamantly disagreed. But I had worried about whether driving was the "right" thing to do. Several of those close to me had broached the morality of continuing to drive. But I so didn't want to give up my freedom. Of course, having had another seizure in the meantime, I could easily agree that loss of consciousness does not make me a safe driver. Not for me, my kids, nor for you. So while I accepted it logically, I didn't want to accept that emotionally. And being able to feel it coming, I tried so hard to convince myself and others that I was still in control, that I could pull over in time. I am so damn stubborn but at the same time, I am fighting inch by inch, to get my life back.

Hopefully you are able to see through all my rambling that yes, I could have just written "I lost my license." and that would have covered this topic. But it really is so much, so much more than that. It takes another piece of me away. I am struggling to figure out who I am. I am grieving the loss of who I was, to accept that I will never be that me again. Yet, it also tangibly reminds me of how blessed I am to have such good people in my life, who want to continue to give despite in several cases, struggling with their own life issues at the same time.

One day at a time, right? But all my "one days" are blurring and my energy for all of this is waning. I am tired of living in Sally Land.

One Little Word.....

REMISSION!!!!!!!

Just Another Busy Day....With Meningitis

Yep, you read it correctly. I am entirely too busy just trying to keep up during my productive hours of the productive days. Then getting caught up from what seems a constant flow of new issues. And yep, the "With Meningitis" is true.

I don't have a clue how I got. But did I! Just hours after I was enjoying appetizers with friends, I was in the hospital. It was that pesky 104.7 fever that clinched that one. And my head and neck. Serious pain. I was so out of it that I don't even remember being taken from the ER to my 7 South (Cancer Floor) room. I do, unfortunately remember the lumbar puncture in the ER (they used my "body art" to guide the needle) and vague recollections of the CT and x-rays.

The next few days were awful. Fevers, pain, huge pain, and lots of vomiting. Then of course I pulled the quick ticket out and came home to do it all some more.

I am somewhat more functioning now but really just don't feel well, despite various and assorted medications and lots of rest. So now I am also frustrated by this. Who is fine one minute then hours later really not fine? Hey, I guess that's just how I roll....

But I did have a great couple of hours at the For No Reason event!

Scene of The Crime

I kind of skipped over my feelings about going back to Seattle in my previous post. The truth is it is all very heavy on my heart. I am anxious for my BMB results. I am anxious about what kind of year two they have planned for me. I am anxious that year two may not be that much more restrictive than the last.

It really feels like going back to the scene of the crime. I have been thinking about what my day was like a year ago constantly for the last several weeks. What tests was I doing? What news was I receiving? How was I holding up? How crazy was I driving my family and friends?

A year ago was the hardest time in my life, ever. I have not reached a point of not recalling so vividly how unpleasant it was. I have yet to share the nitty-gritty of transplant. I suppose I have not been ready. But I will be someday.

This is also why I could never stay at The Pete Gross House again. And why I can't stay at the new long-term follow-up housing facility. I just can't be immersed in it 24 hours a day. They offer short-term housing for people who are back for their anniversary follow-ups. But I can't see it, feel it, smell it, and be in it again. Ever.

The Seattle List

It is exciting, in a way, to be going back to Fred Hutch and all it signifies. It is very triumphant that I have made it this far. And we are exciting to be preparing "The Seattle List". It is a comprehensive list of questions and topics to review with them. Most are desires for lifted restrictions, or at least not as oppressive.

It is very challenging to follow all the rules! Hopefully they will be significantly modified after this one year anniversary mark. I am looking forward to some normalcy and fun when I am feeling well and have the energy!

So please pray for me, or send positive thoughts. My life seems so on-hold and I want it back!

And Again...

Again, sorry to leave you hanging! The last week has been filled with the musical chairs of family sickness. First Brennan and Craig with a cold two weeks ago. Then John Paul last week (it was only a three day week at school and he was home sick, along with five other classmates) then it was my turn. Ugh, my immune system is still so weak. It sent me to bed for three days. A common cold....

I had to cancel three big medical appointments: dentist, surgeon, and oncology. I will reschedule them today. They were all significant and it may be hard to get back in this week. But sharing a cold in the dentist's and assistant's face, and especially into the Cancer Treatment Center (surgeon and oncologist) is just not happening. Most everyone else in there are also immuno-compromised from treatment.

So here's the update:

1. My incision has made some progress but I am not sure if it is enough. I do not know if it will satisfy the surgeon and avoid a second surgery. When I saw her last week, she said if it was not healing significantly by last Friday's appointment, which I had to cancel, that she would need to take me back in the OR, "clean it out" and re-suture like crazy. She said this almost never happens, but as a breast cancer surgeon, the only time she sees it happen is with patients who have had a lot of chemo and other heavy medical issues. Plus I am immunosuppressed, which really complicates healing. That's me! So I have been packing it, continuing my antibiotics, and waiting for miracles....

2. I STILL don't know the final results of my bone marrow biopsy. Apparently Seattle is holding them and all will be revealed when I am there in two weeks. I think this is rather unfair. But I guess it's part of how they get us transplant patients to make the trip back.

The Medical Issues of Others in The Robertson Household

I will be writing soon about others in my life. It just has taken awhile to update you on my issues from the past two plus weeks, and I am not yet done! So here is a break from reading about me.....

John Paul's nosebleeds continue to be a problem. He's seen our PCP (you rock yet again, Dr. LaSalle) a couple of times about this. She has recommended, and we have done, all the standard efforts to reduce his bloody nose frequency. They did become less frequent for awhile, then returned with a vengence in mid-January. Dr. LaSalle had recommened that if the frequency spead up again that we get a CBC (Complete Blood Count) to see if that gave us any clues. This, of course, was something I did not want to do. A blood draw is naturally terrifing for a 7 year-old. I also had an irrational fear that it would show he had leukemia (even though my leakemia is not hereditary. But doctors had told me that the chances of either of my children inheriting Factor V Leiden from me was slim to none, and that both getting was almost statistically improbable, and they both did). But after a four inch clot came out one morning, I threw in the towel and told myself to get a grip on my fears and do what needed to be done for my son.

He was a trooper at the blood draw but scared none the less. Children naturally fear if they lose blood or blood is taken that they will not have enough blood left in their body. Oh, it hurts to see your child in fear and hurts a little more to know that your decision as a parent caused it.

We did it last Thursday so the results were in when I saw my PCP on Friday. Much to my relief, nothing was terribly askew and nothing hinted of leakemia. So next is an ENT, who he will see next week. Poor baby.....

Then there is our dog, Lucky. When we got home from our overnight in Idaho two weeks ago (read on for details), we has really limping. By the next day he could put no weight on his left hind leg. Once again I threw in the towel and took him to the vet. (Going to the vet always signals a big bill in my mind.) $150 later I am told he has either torn or blown his ACL. For a small fee of $450 we could get x-rays to confirm that. Then start meds, then repeat $450 x-ray series. Then most likely a $3000 surgery. They graciously allowed me to skip x-rays and start meds then come back for a re-check. For the next two weeks to come, Lucky needed his meds twice a day, had to stay inside, must go out on a leash to do his business, and could not run, jump, play, etc. At least I have made it through the first week and he does seem somewhat better.

Our cat, Pepper, also has a chronic problem. I won't bore you with the whole story but I threw that towel in the next day. We only get charged for a re-check but she now needs a special compound medication. It is ready the next day at the compound pharmacy. I am sure there is a mistake when I pick it up. Nope. But she doesn't get much better so I am to pick up a new compound medicine for her tomorrow.

So much medical crap easily rocks the stability in a family. So I am literally praying for everyone in my family regarding their treatments and follow-ups. If you have time, please throw in a quick one when you pray. The edge is within view.....

PCP

Okay, just a couple of more holes for me to fill in on the latest in the medical front.

Last Friday I saw my Primary Care Provider (PCP), who I see at least once a month. This scheduled monthly visit allows me to work with a terrific doctor (Love you, Dr. LaSalle!), who follows up on everything and essentially coordinated my care. She allows me to take care of alot of things by phone with her, which I greatly appreciate. But monthly face-to face is very helpful.

Interestingly, one of the main things she does for me is be my insurance coordinator. I cannot see a specialist, get anything other than a routine tes, and even think of a surgery or procedure without advanced authoriztion from my insurance company. Being my PCP and having to deal with my insurance company is no small task. Yet she keeps me, and cares about me. We have even become friends of sorts. Our children attend each other's birthday parties. She is a good woman professionally and personally.

Okay, back to last Friday. We go over the results of my way-too-many recent tests. We cover the refills I need. We discuss the notes that my Specialists have sent. We review my mental health (A new post to come). Finally I ask her to check my surgery incision because it is bothering me.

It is infected. Not good news for anyone but as an IS (Immunosuppressed) person, this news is scary. Believe it or not, a simple infection can possibly kill an IS patient. I go to the pharmacy on the way home (I am there at least once a week) and pick up my heavy-duty antibiotic.

That night the area is really hurting me. I take off the dressing to look and it has ripped about half open. Uh oh. I put a new dressing on and decide to think about it.Maybe it will go away if I don't think about it. Saturday morning I call the breast surgeon on call and you probably can guess what she said. I ignore the instructions, go to John Paul's baseketball game, hang out with the fam, and head off to get a haircut and then go to Mass. By the time I get to the hair salon, I am REALLY hurting. I go to the bathroom, peel the dressing back, and now it is totally open. And icky stuff coming out. I skip the haircut and call my Catholic sponsor Tamme ( a great story to post later, and it's not the AA type of sponsor) and tell her I won't make it.

I go home and hang out, watch movies, suffer and worry.

Sunday was a long day.

I see my breast surgeon at 1:00pm today. I don't know if I can sleep anymore, which is not that unusual in itself, but I am seriously hurting. I have developed a significant aversion to hospitals and avoid going there, even the ER, if at all possible. Who doesn't right?

I will probably get in trouble. It's not the first time......

GOOD NEWS!!

Yesterday I found out that the pathology from the breast nodule removal was NEGATIVE!! As my Aunt Sue said, "Sometimes Negative is good!" Ah, I am savoring this success and step in the right direction. Congrats to me and to all of you behind me!

Some of the test results are also back from the BMB. So far, so good. At this point I am waiting on a very specialized test to detect the presence of the Philadelphia chromosone. If that is there, then the leukemia is around the corner. If not..... A girl can dream, can't she?

I have also undergone a bizillion tests in preparation for my Seattle check-up. While they are "normal" as for a non-transplant person, they are "normal" for me for the most part. A few have been disconcerting and we'll be game-planning in Seattle. But no crisis. Hooray!

I had a substantial improvement in my Lung Function test. For what it's worth, I went from a score of 50 to a 74. 80 is the normal range. Holy cow! More good news!

I am looking forward to my medical schedule (which is also most of my social schedule, unfortunately) slowing down. I have had up to three appointments a day. It is also rather expensive with co-pays and over-allowables. Someday I will enjoy not being such a complete financial drain on my family. I plan on writing a post about my average monthly medical costs someday. Some of you have mentioned that you are curious as to what it costs to be me. Expensive sums it up. But better than dead.

Another progress report is that I am now down to 38 pills a day. This is 20 less than immediately post-transplant. And I am line-free, so good-bye PICC's and Hickman's.

Finally, I have successfully gained five pounds back. I am not up to 97!

I know I said finally, but I would like to close by thanking all of you who have prayed, supported, and helped me and my family through thios latest round of medical events. I literally couldn't do it without you!

Tick tock, tick tock....

I was doing the tick tock, tick tock leading up to the BMB and surgery. I had several days of time in the present, then back to the tick tock, tick, tock of waiting for the results. It sometimes seems I am always in a countdown to some medical issue or the waiting game for results. I dream of not having this cycle at all and am hopeful that after my Seattle trip that there will be more time inbetween.

And Off We Went

The day after surgery was a BIG one, long planned and much anticipated. John Paul played in his first official basketball game. And it was a double header. He and his team, The Orange Beavers (kind of like what all the first graders' permanent front teeth look like right now) did a terrific job! It is interesting to me how the refs basically let things move on as long as the players are in motion and not heinously out of bounds. No scores are kept but everyone watching is taking mental note. It is too funny how competitive we are as parents, checking our players out to see if they have a "future". Some other teams were even keeping their own stats. Of first graders. Crazy!

We hightailed it after the game over to Idaho and to Triple Play in Hayden. It is a pretty cool indoor water park with attached bowling, laser tag, putt-putt, and arcade. It is also oh so conveniently attached to a hotel..... We get checked in and off to the party room to celebrate Gabriel's 5th birthday.

Keep in mind this takes some significant navigating for me. Because I am on immunosuppressants to prevent rejection, large crowded places, especially full of kids, is not on my approved activity list. But some things are just worth throwing caution to the wind, right? So a quick in and then a quick out after pizza, ice cream cake, and gifts. I would have had to spend the rest of the day in the hotel room anyways because of "Germs". So I'm back in the room, hiding from kids and people with germs, ice packing my boob surgery site. I take my good times on the road....

Craig went with the boys to join the others in the water park. They had a great time as expected. I am naturally jealous but at the same time very pleased that they had so much fun.

I am up and down all night, the usual for me, plus some extra with the surgery discomfort. I think I was so pissed and irritated that I had to have the surgery that I forgot I was having surgery. If that makes any sense. Surgery hurts.

Free hot breakfast, with lots of kids. It's not so crowded if you are there at 6:00 am when they open. We immunosuppressed people know all these tricks. BUT....we immunosuppressed people are not allowed to eat mass produced food, that is sitting out where people can put their germs in them, and sitting for who knows how long at possibily the wrong temperatures. Huge danger zone! But I was hungry, it was free, and I needed to take another pain pill.

Next we get over to Kootenai Medical Center to see Keri and meet Liam. Children, of course, are not allowed to visit in the hospital, so Craig and I took turns going in. My turn involves breaking my immunosuppressed rules, again, by even entering the hospital. You would be amazed at how many germs are in hospitals. Not just the sick patients. So hand sanitizer in hand, mask on, I go up to Maternity. I am promptly stopped as the nurse thinks I am sick and she is going to kick me out. I explain the situation and the she lectures me about being in the hospital "with my condition". Thanks for the concern.

I must wear the mask around the baby but I did break the "three feet" rule. I did not touch the baby or hold the baby. These particular rules are derived from neither I nor the baby have an immune systems. Neither of us have our vaccinations yet. We are at present a two-way germ infection. But I am looking forward to breaking those rules too someday.

Keri is beautiful. The baby is beautiful. And both are doing well. To my surprise, I cried when I met Liam and saw Keri holding him. It triggered a cascade of emotions.

On our way back to Spokane, we stopped in Spokane Valley for the boys to attend a birthday party at Chuck E. Cheese. Okay, I give in on this one. No way, no how. A stay in the car while Craig takes the kids in. But.... that morning Brennan woke up sick with a cold. John Paul had a great time.

Now I have to avoid my own child who has LOTS of icky germs. And as a Mom, all you want to do is love on them and console and comfort. Ugh, this is all so hard! He ended up home from school the next day too. And then the day after that Craig was home sick with the cold. Talk about having to isolate and avoid.... All the standard immunosuppressed rituals began and continued. I won't bore you with it, but it's quite an undertaking.

The super Bowl took up the rest of the afternoon. GO SAINTS!!!!!!

Good news is that we are all healthy now.

February 5 Was A Busy Day!

Two of my dearest friends already had Friday, February 5 reserved! I certainly wasn't going to allow a little surgery to get in the way!

I am pleased to share with you that Liam Garr-Coles entered this world at 9:00 am that day. Keri gave birth via c-section to a handsome and healthy baby boy. My sincerest congrats go out to Keri, Gordy, and their daughter, now a big sister, Jessi. Although I didn't get to visit Keri and Liam until later, it was a day of celebration.

February 5 is also the birthday of the son of another one of my best friends, Belinda. Gabriel turned 5 that day, now sharing Liam's birthday.

Many blessings to both families!

And That Was Only Thursday....

Why not get all the suffering done at one time? So the day after my BMB, I had surgery. Long story short, I had found some nodules next to my mastectomy scar, in the area my original breast cancer was. A couple of doctor appointments and an uncertain ultrasound later, I was headed off to have the nodules removed.

The surgery time was pushed back several times, but late Friday afternoon my breast surgeon (kind of weird when one no longer has breasts) created a new incision and removed the nodules. Unlike the day before, they had the meds to push my blood pressure up and I remember none of it and escaped the apin. Thank You Dr. Anesthesiologist!

Again, after the requesite juice, toast, pee, and IV removal, I was on my way. No pain at all. Until all the local wore off a few hours later...

Lots of ice packs and a couple of pain pills over the next few days. But they were good days and worth not following doctors orders to take it easy, right?