Facebook blues - or crazies. Take your pick.

This is the entire thread from a post that John made on his Facebook page from a few days ago. The whole thing really upset me, so I'm posting it here, mostly to vent. I've edited it for clarity (removing people's thumbnails, timestamps, and how many people liked a post). I have all of this on file, for those who might think I edited it to my own advantage. I've also added in the places where other people edited their comments after originally posting. Finally, justified to the right border, I've adding in notes of my own, to explain my thought processes as this was taking place. Otherwise, I've left in the posts exactly as they appeared, typos and all, although I redacted the last name of the most prolific poster, for reasons that should become obvious.

John Elder Robison

From the Robison Archive . . . Cubby tests the flamethrower, after zombies are reported three miles away. Needless to say, it worked.

Stacey Eubanks Herrera

My son got two cases of MREs today. He's still begging for a flamethrower (he already checked and says they are not illegal here)!

John Elder Robison

They are legal most places, as far as I know

Suzanne Scott Ruckman

Okay, spill! My 10 yo asked for a flamethrower for Christmas!

Yvonne

We use them in Texas for burning certain grasses for other seeds to grow...

Lisa Bennett Lyman

That would come in so handy for snow/ice removal. The neighbors hate me anyway, might as well go for it.

Miriam Rubinoff

Once you have the MREs, the flamethrower isn't far behind. Just be careful where you light the match.

Matthew Scott Brady

They are legal because most governments assume that they are too impractical for you to have.

Apparently, they hadn't considered the Aspie Mad Scientist demographic and our ability to build crazy sh*t in the garage... Muhuhahahaha...

Greg Poppino

Matthew Scott Brady read "Raising Cubby"; it has interesting insight on what can happen when an Aspie science geek gets the not-quite-understanding scrutiny of overzealous Feds who've seen videos of homemade stuff that goes boom.

Mary Robison

As the raidee, let me assure you that "legal" is a matter of interpretation - ultimately the jury's, but the D.A. can make your life a living hell in the meanwhile.

Yvonne

Jury or judge depending on whom you chose. American law is based on case law which gives interpretations of the actual laws. As for District Attorneys.. they represent the people of the state. When you engage your children in hazardous activities, people can file a complaint to the D. A. ... Don't blame the lawyers.

Note – the implication is that I allowed my son to engage in hazardous activities.

Yvonne

Esp if the children are underage...and no parent is around.

Note – the implication is that I did not supervise my child.

Mary Robison

There's a local saying - "A good D.A. can indict a ham sandwich." The implication is that you don't have to be doing anything illegal to get indicted for something. I DO blame the lawyers for that.

Note – did I say anything about hating all district attorneys? I was actually paraphrasing Jack's lawyer, who said that, except for the fact she couldn't stand him, he might have thought that our DA wanted to make him a rich man for all of the inappropriate cases of prosecution that wound up hiring him for defense!

Yvonne

The District Attorneys represent the people of the state.. if you hate and blame them, then you blame the people of the state. Perhaps Minding an underage child is far better than an investigation and a charge made on evidence. If challenges the people of the state and the laws their law makers created , perhaps you need to be more mindful of rights of others as well

Note – BINGO! First mention of the word, “hate” and I didn't make it.

Yvonne

You can blame anyone like most socialists do, but that means didly squat in the reality of things and using and teaching responsibility

CHANGED TO:

You can blame anyone like most socialists do, but that means didly squat in the reality of things and using and teaching responsibility. Too many people do not want to take responsibility for their actions.. it boils down to that more than the D.A.

Note – socialist? This actually came from a previous disagreement I had with Yvonne, when I suggested she was a polite equivalent to bat-shit crazy for believing that the implementation of the ACA would result in everyone being implanted with microchips, to track them! I kid you not!

Yvonne

As much as I understand Cubby because I have friends whose geek son at 14 did the same thing... that parents need to be aware of what their children are involved in and if they are using devices, chemical etc that require adult supervision. If you lacked in that, you lack in parenting.. I , myself as a child was on a constant watch list with my mom when she heard the tool box in the garage being opened.. next words from the kitchen unseen was "Yvonne, what are you up to". Parents who shoot the D.A> also need to look at how they handled it as parents.

Yvonne

It costs taxpayers too much tax dollars for irresponsible neglect of children using dangerous things... parents should be there with them. As a child if I used a flame thrower, I had a parent around like John is while taking a photo.. Hunting.. a child should be with the parent. If you are not with them, D.A. has a right and children protection services to investigate and indict. IT all could have been prevented if a parent was present.

Note – Understand what she's saying – that John is a responsible parent for supervising his child in the use of a flame-thrower! (Not really – it's photoshopped). Since all of Jack's chemistry videos were made at John's house or in the woods near John's house, I'm not sure how she has twisted this into my not properly supervising Jack.

Mary Robison

Conservatives and Republicans rarely let the facts get in the way of their spin. But enough highjacking of John's thread - you don't like me and I don't care! But say nasty things about my kid and you've got another story. You know NOTHING about socialism, or you wouldn't be a Republican! You know nothing about how my son was parented. You know nothing about my local politics. You also know nothing about Photoshop.

Note – OK, this is where I lost my temper and deliberately poked the bear. I'm referencing that prior disagreement, when she explicitly accused me of being an arm of the NSA. Although why the NSA would take a known "socialist", I still don't understand... 

Yvonne

I would say the same for socialists who are responsible for the largest numbers of mass murder in human history.

CHANGED TO:

I would say the same for socialists who are responsible for the largest numbers of mass murder in human history. I use photo shop since it came out. The shadowed edges are obvious.. I am a retired art professor. you ASS U ME too much.

Note – this was edited after I commented that I didn't care what her educational background was.

Yvonne

no one is hijacking.. I never stated I did not like you.. we are discussing Johns topic.

CHANGED TO:

no one is hijacking.. I never stated I did not like you.. we are discussing Johns topic. seems like you are spinning and getting hyper emotional. BTW I was president of women's liberation in my city at the age of 19 and I was a republican the next years still being the president.. I am a feminists and so is my husband and daughter and her husband s family.. so what does this have to do with hating representatives of the state criminal laws?

Note – this is where she's overtly gone into her own little world where I'm the evil socialist who hates the minions of law and order.

Yvonne

IF you mention you dislike and blame D.As you have to realize not everyone will agree. Mary, I worked in the criminal justice system for almost 10 yrs and went to law school. My husband is an attorney.. I simply responded to your comment. I have no emotion about it

Note – husband is an attorney. She went to law school, but either did not finish or did not take the bar exam. It is not clear in what capacity she worked in criminal justice. Exactly what her qualifications are, not clear, but she is claiming expertise. For someone without emotion, she gets pretty heated.

Yvonne

I never said anything nasty about "your child". I did say when parents blame attorneys , even if it is DA or defense.. they need to look at their examples as parents.. who was with Cubby when he was a child when that occurred.. ? its not about Cubby.

Note – she's right, here. She never said anything nasty about Jack, just me.

Leo Zicc

nothing to warm the heart like a boy and his flamethrower.

Yvonne

I know nothing about socialism? my family lived in socialist Czechoslovakia who had socialism forced on them. Do you know my educational background. ? I do know parenting when I see it

Yvonne

and his father who is with him... Leo..

Note – Not to denegrate John but, prior to our divorce, he was a one-day-a-week dad. He did his best, but a lot of things got in the way (mostly getting the business making money, but some of his activities were really not good. Enough said.). John was with Jack on Sundays, only, from birth to age 7.

Yvonne

In Tx as I stated, we use flame throwers for native grass manipulation of different species.

Mary Robison

Dictatorships such as those found in the former satellite states of the USSR were closer to Fascism, despite calling themselves socialist. So yes, I don't think you know the difference. I don't know your educational background and don't particularly care. All I know is that you misuse political terms as insults. And you assume that politicians like district attorneys always represent the will of the people. I disagree. You blame me (but not John?) for our son's upbringing. Because it's always the mother's fault.... ridiculous. I'm done with you. Say whatever you want. You aren't worth my time.

Yvonne

They are socialists

Note – nyah nyah!

Yvonne

Obviously I was worth your time John is with his son most the time. Where did I say it was the mothers fault. I don't even know you.

Yvonne

John did a great job of raising Cubby..

Note – see prior note on Jack's upbringing.

Mary Sweeney Warwick

Passive aggressive much Yvonne?

Note – the first of my defenders. Several more quickly piled on.

Lisa Bennett Lyman

OMG, Mary Robison. I flipping love you so!

David Esau

this yvonne appears to know nothing about civility, Christmas or propriety while using facebook.

J Robert Prout

Wow, must be something about the name Yvonne; I know of one in my area that really gets off on ass-u-ming the worst in others also and making people's lives miserable.

David Esau

sitting here slack-jawed at the nerve. what it's all about is personal responsibility. but this raises questions about overall poise. in fact, who is she helping -- RIGHTNOW??

Amélie Frank

Yvonne, you are annoying and rude. Give it a rest.

Trish InSpace

I can't see her posts, so I know which yvonne it is, she is not well, best to just not see her.

John Elder Robison

The comments on this certainly covered a lot of ground. In any case, flamethrowers are not regulated like guns and are legal more places than not. As for Cubby's trouble with the DA . . . time showed that DA for what she was, and she is long gone. As my friend in the State Police observed - the victors write the history, and I have done so. None of the people who investigated my son's videos or experiments believed he was a criminal, and none wished to see him indicted. That was pure opportunism on the prosecutor's part - a play for news coverage by making a terrorism story where there wasn't one. Finally, I'm not sure what people think is photoshopped on that image; all I did was adjust light and dark ranges. Woof!

Note- John sees, as Yvonne does not, that by attacking me, she implies that Jack's prosecution was appropriate.

Brad Beadel

Interesting to see what happens in America and at least Cubby learnt and survived. Does seem he knows the dangers of what happens with fire and he hasnt set the bush on fire yet.

Brad Beadel

Unfortunately the law always hurts the little people as there is always someone who wants to make a name for themselves who are higher in the foodchain that has no grip on reality or just dont care at all.

Kathleen B Tehrani

RAISING CUBBY is an excellent book....well worth reading. I hope anyone with a desire to understand how someone with self serving intent (that does NOT mean a D.A specifically but ANY person who is in a position of authority) can nearly ruin a young person's life....takes the time to read it and pass it along.

Not only is RAISING CUBBY informative....it's also hilarious. Great read.

CHANGED TO:

RAISING CUBBY is an excellent book....well worth reading. I hope anyone with a desire to understand how someone with self serving intent (that does NOT mean a D.A specifically but ANY person who is in a position of authority and does not handle that authority with integrity) can nearly ruin a young person's life....takes the time to read it and pass it along.

Not only is RAISING CUBBY informative....it's also hilarious. Great read.

Mary Robison

Thanks for the support, folks. As far as John singlehandedly raising our son, I refer you to the dedication he wrote in the book. You can ask Jack if he was ever left unsupervised in my house. Someone else said recently that teenaged boys are like unfixed cats, slinking around in shadows and corners - and it's true. Jack has lived in his own apartment for over two years so he doesn't see his father except for family dinners. I talk to him a couple of times a day ( he called for a quick chat as I wrote this - it's snowing hard and there were five accidents on I-91 between Brattleboro and the MA state line - I told him to drive carefully). I think we both did a pretty good job raising our son, who is doing many interesting, creative, and socially-responsible things with his aspie special interests. Those stories will have to wait for another day.

Chris Nielsen Berg

Mary Robison, you and John were and are excellent co-parents for Jack! No doubt about it. I have such tremendous respect for you both.

Martha Mauck Good

You can't be complacent anymore. Thank goodness you are pro-active folks and make sure things will work when the time comes.

Barbara Wilt Gerber

I wanted one of those for Christmas.

Note – Barbara is going back to the original humorous discussion about flamethrowers. Again, everyone piles onto this.

John Elder Robison

Martha Mauck Good - you so so right! You never know when living dead will emerge from the swamp bent on evil. Fire is the surest cure

Kathleen B Tehrani

That gives me the willies.

John Elder Robison

It should. Swamps contain unspeakable horrors, just waiting for the unwary to find them.

Kathleen B Tehrani

Oy

Mary Robison

Yeah, while a 50 caliber round is equally effective against a single maurader, the noise often attracts more undesirables. A good flame thrower just sounds like a furnace cycling on and off and you don't need the precision, either.

Stephanie Rembert

would it be too weird for me to say that i think it's beautiful? because i'm totally gonna.

Yvonne

AS people do not like to be labeled falsely, nor do servants of the people. How about respect for all. People using autism for hate of public jobs is as disgusting as those who do so against AS people, when a few break the law and other AS people are attacked like the school , last year. You are no better than the people you hate, because of a few. Hate and bullying is cancer , even when AS people hate and bully professions

Note – now I'm a bully? And bullying people on the spectrum? WTF?

Yvonne

Mary, embracing hate much.? I love discussion but not when a cancerous hate is embraced. I guess the 2 Mary, s do. But that is socialism for yo

Note – yep, I guess that's exactly what Yvonne means. And she's aiming at Mary Sweeney Warwick, too, for coming to my defense.

Yvonne

Mary. R, A shot gun does a far better job ans was and is used by ranchers .IT SAVED THE WEST FROM NIGHT raiders. Learn some history and facts ,. It helps

Note – is this a direct threat against me? You tell me.

Yvonne

Oy is the perfect word. When socialists get one person who backs them up, they attack .

Yvonne

Brad more evil people get away than good. And tge "little" people as you reference them as always innocent are some of the worst who play victim. Like Casy Anthony

CHANGED TO

Brad more evil people get away than good. And the "little" people as you reference them , as always innocent are some of the worst who play victim and are evil. Like Casy Anthony. Crime is equal in all groups of citizens

Note – now she's comparing me to Casey Anthony, a woman who probably murdered her toddler daughter to go out clubbing and kept the decomposing body in the trunk of her car before discarding it in a swampy area.

Kathleen B Tehrani

One of the things I admire most about John, (other than his wonderfully bizzare off-the -wall humor of course), is his clear focus on a concept during a discussion.

I've never observed him attacking a person or a person's character.....just agreeing or disagreeing with an idea or concept.

I enjoy that about John's wall.

Yvonne

Yup John ans Maripat are excellent parents . I remember when he was suffering angst with Cubby's case and had to suffer a harrowing divorce from a non participant bio parent. He did not deserve that. As a feminist since 1969, I support equal rights for fathers.

CHANGED TO:

Yup John and Maripat are excellent parents . I remember when he was suffering angst with Cubby's case and had to suffer a harrowing divorce from a non participant bio parent. He did not deserve that. As a feminist since 1969, I support equal rights for fathers.

Note – now in Yvonne's mind, I was a mother who abandoned her child and husband.

Yvonne

Yes I agree but there are those who hate people like DA's , children and animals. If you stand by and do nothing then you are part of the problem.

Note – and, apparently, I hate children and animals as well as DA's!

Yvonne

Kathleen he went after the Wright's with my support and he was justified.

Note – John did not “go after” the Wrights. He resigned from Autism Speaks after Mrs. Wright said something incredibly hurtful (and not for the first time).

Kathleen B Tehrani

I believe it was the statements that were made.....not the person.

Yvonne

Actually I adore Swamps. Tg at is where you find some of tge greatest art treasures of the past. The lives in swamps, bos, and quaigmeyers are incredible

CHANGED TO:

Actually I adore Swamps. That is where you find some of the greatest art treasures of the past. The lives in swamps, bogs, and quaigmeyers are incredible.

Note – huh?

Yvonne

Kathleen that is highly sekective as statements are made from peoples opinions (The person)

CHANGED TO:

Kathleen that is highly selective , as statements are made from peoples opinions (The person)

Mary Robison

Yvonne, you are a terrible bully. You were the person to first mention blame and hate, although you can always go back and edit these posts, too, to make it sound like I did that. And you know NOTHING about John's and my divorce - did you know it happened ten years before the raid, and that we shared 50/50 parenting for all of the years until Jack was 18? John's second divorce was the one just after the trial - and I had nothing to do with that! John and Maripat got married two years ago, when Jack was 21. I agree that she is an excellent parent, but she didn't raise Jack. Yvonne, you are a terrible fool, a bullying monster, and you demonstrate it with every utterance on this thread. John - can you take it all down, please?

Note – My temper is GONE! John's second marriage (not Maripat - she is his third wife - and I agree with Yvonne that MP is a wonderful person - but Yvonne doesn't KNOW MP and I do!) was to the woman with whom he was inappropriate while we were married. At the time, I stayed as far away as possible from that quagmire, for my own sanity!

Yvonne

What makes Swamp Thangs evil? Have you ever met one?

Note – guess I'm a Swamp Thang, now!

Yvonne

Mary , only one person labels DAs with such venom and it was you, alone at the start. Perpetuating thefrom the start, . I am glad you divorced John. It made way for a beautiful marriage of non hate withMaripat. The reason John stays out of controversy on his wall is because he had a life time of it with Madame Mao in a marriage.

Note – except when I'm Madam Mao. But – go back and look. How much venom did I spew about DA's? This is where I called Maripat and talked to her for a while, then did my best to NOT respond to anything.

Yvonne

John was and is a great parent. Sorry you diagree

Note – never said, in my posts, that John was not a good parent. And I continue to think he did his best; he just wasn't around very much for those first seven years. He was much better after our divorce.

John Elder Robison

Come on people! It's a humorous post about a kid with a flamethrower and zombies in the swamp! It's not a parenting fight or a political fight! Yvonne, please key off Little Bear. She is a fine parent and is on the spectrum too. Little Bear has nothing to do with the entertainment value of this image. As for the Wrights . . . I did not ever attack them - I don't attack any of you - I just said that I did not want to be part of an organization whose leadership expresses the thoughts expressed by Mrs Wright in her recent op ed. The Wrights are fine people but their world view is seemingly very different from my own.

Yvonne

Nope D A. Hate was brought up by whom ....?....?... hmmmmm

Yvonne

Littke bear blamed DAs as a group

John Elder Robison

I don't know which of you brought up "hate" but it was not me, and was never the point when I post pictures for entertainment. Woof!

Yvonne

John I never said attacked. I stated went after. Huge difference

Kathleen B Tehrani

You're better than that Yvonne. Don't go down that road.....stating ideas is fine, but don't attack people. You're better than that.

Yvonne

Dissing ALL DAs was brought up my Mary Robison

Yvonne

Kathleen iguess you joined in

John Elder Robison

OK, attacked, went after . . . the point is not who used which word. The point is that I was posting entertaining images and captions and the commentary moved rather far off that mark.

Yvonne

Better than what Kathleen, do tell

Yvonne

Who attacked whom first Kathleen.?

Yvonne

Do address Mary who posted the ill will about DAs

Kathleen B Tehrani

Last comment (sorry John):
You're highly intelligent Yvonne and you can make valid points without focusing on personalities. That's what I meant by "Better than that".

Yvonne

Kathleen , so can you hmmm?

John Elder Robison

In my opinion - and this is my page, after all - what matters is that I didn't attack any of you, and if you want to fight between each other, this should not be the place for it.

Kathleen B Tehrani

Peace out.

Neil M. Fennessey

Hey. Your fans are fighting for your special favor and recognition! Pretty amazing.

Yvonne

Taking screen shot else where. ? You are correct john

Yvonne

So glad Maripat is such a brilliant lovi g person. Evening all

CHANGED TO:

So glad Maripat is such a brilliant lovi g person. Evening all . This will be remembered

Note – this also sounds like a threat.

Mary Robison

You can't argue with crazy. Blocking.

Yvonne

Actually not me Neil. I have my own recognition thank you . Plus I never had to feed off my husbands name. My book will be out soon. I had a horse load of business responsibilities which slowed it down. See you all again

Neil M. Fennessey

Yes, I too have fed off of John's and Mary's fame. Bound to happen since I've known them both for 40+ years. Through good times and bad and now again through the good times thanks in part to Maripat. John's acknowledgments in this latest book nail it so well.

Mary Robison

I love you, Neil. You're another of my brothers, just from a different mother.

Gordon Taylor

Yvonne, you throw around words like socialist, communist, fascist, racist and nazi like rocks at people. And in our society, about the three of the worst words you can call people are nazi, communist, or fascist. And you use all three words with reckless abandon, not caring who you hurt. This is cyber bullying.

Eugenia Brady

You go get'em Jack!!!!

Yvonne

I use them with experience and wisdom. Especially when good , caring DA' are attacked.now Gordon did not John as for humor. I could say you do make me laugh so perhaps respect our host;)

Gordon Taylor

Yvonne, you would flunk polisci 101. And perhaps writing 101. And communications 101.

Yvonne

Gordon its historical facts not name callling but political afffliiation like Swamp Thing :))) if the politically bent swamp fits, wear it. Personallly I cant stand blood sucking leaches in swamps , in pokitics , or real life who suck blood of happy talented peoples

Gordon Taylor

Who writes your lines? The late Ayn Rand?

Yvonne

Calling my typing on a new tablet I hate , I have hadvthehonor of. Being ueen of typoes 1.thank you for your politically attempted try at demeaning with judging typing on social boards . Pretty desoerate when tge do the typo spelling complaint , Considering the scource, If that is alll a leach cn do, then its not the most talented. Leach of the swamp.

Gordon Taylor

Please stop projecting. You are blinding me.

Yvonne

Say goodnight Gordon.

Gordon Taylor

Goodnight Gordon.

Yvonne

Night Mary and blocking youself never works

Yvonne

I was hoping you would respond withat line Lol There is hooe for you yet !

CHANGED TO:

I was hoping you would respond withat line Lol There is hope for you yet !

Yvonne

Nice to see. I am getting stalkers from this page . The only site I ever got them. As much as like John . Mamy of his followers are stalking and violent. They seem to have a commmon character , and hide behind fake Fb acccounts. ? This telks me even more,. ALL PMS ARE saved

Leo Zicc

hold it...hold it. i can fix this. my dad is a tv repairman, he has an awesome set of tools!

Note – this looks like the end of it. Opinions, anyone?

Unsettled

I need to set this down, before I forget parts or lose my courage. I had a very unsettling encounter on social media, earlier today. John had posted a funny picture, supposedly of Jack and a flame thrower, along with a comment about zombies nearby. Several people responded in kind, one commenting that these things were totally legal but that law enforcement sometimes took a dim view on their use. I chimed in, saying that although they might be “legal”, ultimately that determination was made by a jury, and that a district attorney could “make your life a living hell”.

Suddenly, a woman with whom I've argued about politics in the past started making nasty comments about “when you engage your children in hazardous activities” “with no parent around”, it only made sense for authorities to investigate. Where this was coming from, I didn't know, but it was obvious to me that this woman was accusing me of neglecting Jack, which had led to the raid on my house and all of that circus. 

The woman implied that I had denigrated the district attorney (I hadn't, but only because it wasn't necessary for my comments), and that in doing so, I was somehow disrespecting the people who had elected the DA. She was adamant that district attorneys only prosecuted people with good reason - the strong implication was that I had neglected Jack, subjecting him to prosecution. She said that I should have been the one to be prosecuted. Amusingly, she used the photo of Jack, supposedly using a flamethrower, as evidence of how John was a good father - that he was, in fact, supervising Jack while also taking pictures!

The woman is a big fan of John's, which made it even weirder. Her accusations included my being a socialist(!) as well as a “non-participant bio-parent”, from whom John had had a “harrowing” divorce around the time of the trial.

To state some facts, John and I divorced ten years before the raid. During the divorce, we divided parenting duties 50/50. John remarried a few years later and was having trouble with his marriage to Martha after the trial; they divorced the following year. John had a bad experience with the woman that he was dating at that time - she dumped him nastily. Still later, he started dating and ultimately married Maripat. But I had nothing to do with any of this.

I must admit, I did some things to push this crazy woman's buttons, after she accused me of being a socialist. I said that “conservatives and Republicans rarely let the facts get in the way of their spin.” This was rude, but it was provoked. I told her that she knew nothing about socialism, how Jack was parented, local politics here, or Photoshop (John had seriously retouched the picture). This infuriated her. She claimed expertise on socialism because her parents or grandparents had escaped Czechoslovakia after WWII. She later (after editing one of her posts) claimed expertise in Photoshop as a former professor of art, and of the legal system as a former law school student and the wife of a lawyer. (Also amusingly, she later commented that I was essentially riding John's coattails to fame, whereas SHE never did this!)

I said that I didn't care what her educational background was, that she was confusing the practice of Fascism with claims of socialism. I would have added how the Nazis had originally been the National Socialist party, but it didn't occur to me at the time.

After a while, she just started raving, making post after post after post. John finally came in (after I called Maripat on the phone) and asked for the name-calling to stop, but it didn't. I watched for a bit, then got my last licks in – I said that you can't argue with crazy and I blocked her. Then, I could see that others were still responding to what she was saying, so I broke down and unblocked her, so I could document her activity on the page. I copied out all of the comments. A funny thing occurred, about ten minutes later – she “hid” most of her comments, after making a comment about screen-shots – I don't know if they are only hidden from me or from everyone, but I found it weird (and too late – I've got them). She didn't block me, though, as I can still see a few of her comments.

One of those comments was unsettling. During the time when she apparently went offline for a while, the original thread of silliness about zombies, flamethrowers, and firearms had restarted (before she came back, went ballistic, and started raving). I made a comment that a flamethrower was better than a 50 caliber (I didn't specify the weapon, just the caliber), as the gun only took out one zombie, required precision aim, and the noise would bring out more marauders, whereas a flamethrower only sounded like a furnace cycling on and off. She suddenly came back, commenting that a shotgun was superior to a rifle at taking care of “Swamp Thangs.” Her later comments strongly suggested that she was referring to me and some of those who had come to my defense (in the thread) as the inhabitants of the swamps. I know that she lives in Texas and therefore, has easy access to firearms, but I doubt that she would come here to pick me off. Still, you never know, so if anything happens to me, law enforcement should take a close look a this woman, please!

I've got to ignore this deeply disturbed woman. She is the founder of an organization that I was a member of, but I quit it tonight. Facebook won't let me block her again for 48 hours. I'll decide what I want to do, then.

Labels

Labels can be obnoxious, terrifying, and comforting. I use, as my example, my recent experiences in the health care industry. In order to get paid, a doctor must provide a diagnosis. The problem is, my diagnosis is still in flux. After three bone marrow biopsies and frequent blood samples, we still aren't entirely sure what's wrong, although we definitely agree that something IS wrong with me. But I'm finally becoming reconciled to some of the labels.

Initially, I was admitted to the tenth floor of the Lunder Building at Massachusetts General Hospital. Since I entered on a gurney, I never saw the label on the button in the elevator for the floor: Cancer. According to the official website, the tenth floor of the Lunder building was designed for “Medical Oncology” and specifically for bone marrow transplant patients. The hematologist at Cooley Dickinson Hospital in Northampton told me that he thought I had aplastic anemia, but that I would need a bone marrow biopsy to confirm this diagnosis. Nonetheless, this became my label.

The first person to mention cancer to me was a nurse, after I'd been a patient in Lunder 10 for several days. She told me that I had leukemia (until tests came back later that day – then my label changed again). At the time, I thought that aplastic anemia was “better” than cancer. It isn't. Many forms of cancer can be cured; aplastic anemia cannot.

I was discharged from Lunder 10 after my first bone marrow biopsy. It indicated that my blood was starting to regenerate, so I wouldn't be needing a transplant in the immediate future - days earlier, I had been planning to watch the July 4 fireworks from a window on the floor, as I had been told that I wasn't leaving without a transplant!  As I left, I still didn't have a diagnosis despite the suspicion that I had a B cell lymphoma. I was given an appointment for the hematology clinic, on the first floor of the Cox building at MGH.

A few days later, I returned to MGH. I was directed to the clinic, whose door was clearly marked with two different labels: “Bone Marrow Transplant Clinic” and “Leukemia Clinic.” Oh, dear. Neither of these was anything that I wanted to visit. Still, the receptionist was kind, constantly offering snacks, drinks, sandwiches, and candy to everyone who entered.

After I had made the trip in to Boston many times and had my visits cut from weekly to biweekly, to monthly, and ultimately to every other month, at some point, the labels on the door stopped intimidating me. I saw the same people in the waiting room. Some appeared to be getting better while others did not. But, I didn't see anyone like myself – everyone had a definite diagnosis and a treatment cycle. I was the odd one, getting repeatedly tested but never needing any infusions or transfusions.Maybe I could escape a label.

After the third bone marrow biopsy, my diagnosis was “finalized” as aplastic anemia. Although I continued to have symptoms suggestive of B cell lymphoma, I needed a formal diagnosis for my insurance. It had been five months since I first got sick and the only the thing that was certain is that my bone marrow had failed and was not rebounding to normal. Therefore, the only diagnosis possible was aplastic anemia. I wasn't happy but I understood the need for a label.

Then, just when we thought that I was in a stable place, things changed about two weeks after the appointment where my visits were cut to bimonthly in the second week November.

Just before Thanksgiving, I developed a new symptom – pain and numbness in my left jaw. I thought that the tooth that I cracked after Jack's ATF raid on my house – the one whose corner had separated about two years ago - had finally developed a cavity. I went to the dentist to have it x-rayed. There was nothing wrong with it. Dr. Archambault told me that sometimes, cardiac insufficiency caused left jaw pain and numbness, and that I needed to see my primary care physician immediately.

Dr. Rouzier didn't have any open slots, so I saw Dr. Maria Gallo. She had been my physical therapist before she went to medical school, so we already knew each other. I saw Dr. Rouzier in the corridor, and he told me to tell Maria that they should talk about my problem, whatever it was. And what it was, wasn't obvious.

Once again, I was an enigma. Maria ordered a special CT scan of my head to be done at Cooley Dickinson, to see if I might have an aneurysm pressing on the nerve. I walked out to my car and realized that I couldn't catch my breath - just like when my blood crashed in June. I went back in and asked for bloodwork. Maria agreed and sent me to the lab, where they drew blood. She called me later that evening, to tell me that my hematocrit was a bit lower than it had been for months and that she had talked to Dr. Rouzier. Maybe it was headed down, again. I would follow up with him the next day.

I remembered that when my blood was crashing back in June, I had intermittently suffered from an earache in my left ear without any ear infection. Maybe this was related as both areas are enervated by the same branch of the facial nerve. Or maybe not. I would have a larger battery of blood tests the next week, on the Monday after Thanksgiving, then another visit with Dr. Rouzier on Tuesday morning.

I wasn't feeling well all weekend. I wasn't feeling awful, but I thought that my hematocrit and platelets were dropping – I was really having a hard time catching my breath and I had bruises everywhere. I zipped up to UMass after teaching at HCC on Monday and got my blood drawn.

Practically as soon as I got home, I had a call from Dr. Rouzier. He had also left a message on my phone (I had forgotten to turn on the ringer after my class). My hematocrit was 23. My platelets were 63. My white count was as low as it had ever been. He had talked to Dr. Ballom to see what she thought. We agreed to meet Tuesday morning and make some decisions. Minimally, I needed a transfusion, but he thought I might be admitted for further testing.

Tuesday, Maripat drove me to MGH. Maripat recoiled when she saw the signs on the clinic door. I had forgotten about my visceral response, the first time I saw them. I had blood drawn for a type and cross-match and an IV installed. And we waited. And waited. And waited. I was interviewed by Dr. Ballom's new medical student, then she examined me. And we chatted about what to do next. We agreed that things had changed since our last meeting, and that I needed to have the CT scans that we had planned on scheduling in February or March as soon as possible.

No blood was forthcoming. I had apparently developed a lot of antibodies to proteins in other people's blood since the transfusions of June. Finally, I agreed to return the next day. I needed to teach a class at 1:30 PM on Wednesday, so we would have to start as early as possible.

I met John in the parking lot to Big Y at 5:30 AM. Traffic into Boston wasn't bad at 6:30, so we arrived at MGH at 7:00 AM, and got to the clinic before 7:15. John had to push me in a wheelchair as I knew that I wouldn't be able to walk that far. I directed him from building to building until we got there. He, too, wasn't pleased to see the sign on the door. I thought that he would prefer to eat, visit Padihershef the mummy, or even the medical museum, but he mostly stayed in the clinic waiting room, napping and looking at his ipad. I was surprised; he hates waiting rooms.

I had an IV installed and more bloodwork was done. The blood, promised for 7:30 AM, didn't arrive until 8:45. Then, my IV line perforated my vein, so my nurse had to install a new one in the other arm. She had to slow down the rate of flow, so the transfusion took a longer than expected. The second unit of blood was also late. We didn't leave until 12:30, two hours later than we had planned. But I was able to walk to the car in the parking lot. I didn't make it to my 1:30 class but I taught my 2:30.

I still have the label of “aplastic anemia.” I'm getting ready for a new label. The CT scans next week may locate a lymph node that has been turned against me. I think I want a new label, “lymphoma”. I think I'm ready for it, now. I'm not sure that my insurance company will appreciate a new label. It doesn't matter. I'm changing insurance at the end of the year!

Black Friday 2013 / Walmart Karma

      For the last dozen or so years, I've enjoyed the thrill of the hunt from shopping at the Black Friday sales. I plot my route, strike quickly, and rarely take more than a few hours to acquire all or nearly all of the objects of my desires. This year was a bit different, as I've been ill and I'm still pretty weak, at times.

     As usual, I went out early on Thanksgiving morning and bought the local newspaper, then scanned the ads, the only reason why I bought the paper! I had few needs this year. I plan to make most of the presents that I'll give but I needed a few items, myself, and the sales were the only way I could afford them.

     My television has had hard use this year, often running 24/7 while I was sick. I noticed a shady patch on it a few weeks ago and decided I'd better plan on replacing it before it entirely fails, which will certainly happen before next year's Black Friday sales! Lots of store had large televisions for sale, but I've made very little money this year and, as a consequence, I need to pinch every penny until it screams. I chose one for $97 at Walmart. I don't like to patronize Walmart but my choice was buying from them or not having a television at all as the next cheapest was in the $250 range. The other reason to buy this one was that they guaranteed that anyone who tried to buy one in the first hour that the store was open would get it before Christmas, even if they ran out of stock today. All of the other TVs everywhere else were limited to stock.

     When I was sick, a number of friends helped me by reorganizing my house and throwing out a lot of unnecessary stuff, but some important things got tossed, too, such as my old laptop bag (I had the laptop in the hospital). In the bag was my Livescribe pen and the portable drive that I use to back up the laptop. A backup is a necessity. I saw that Staples had a terabyte portable drive for $50, in my price range. I'll eventually replace the Livescribe pen, but not anytime soon.

     I had purchased a few things at Walmart last year and had no trouble getting in and out, about 15 minutes after the store opened, by giving the opening line enough time to wind its way in but before most people started to check out. I both checked my ad and online for my local store's opening time; Massachusetts is one of only three states that does not allow stores to open on Thanksgiving Day, so I wanted to arrive in a timely fashion. Walmart was supposed to open at midnight and Staples (just down the street) would open at 12:30. I arrived at Walmart a little early, just before midnight, and the line wound to the end of the building. I stayed in my car and waited until midnight. The line didn't move. At 12:20, I put on my mask (my white blood cell count is low and I promised Maripat that I would wear while shopping. I had intended to, anyway, but my promise made me less self-conscious). I locked up the car and strolled over to one of the police stationed at the doors to ask why no one was entering the building, He told me that the store wouldn't open until 1 AM! I decided to pick up my hard drive, first, and drove to Staples.

     Staples had opened before I arrived. I was directed to join a line of people waiting for computers. The line wasn't terribly long – maybe twelve people in front of me? But the line didn't move. After about twenty minutes, suddenly, employees received new instructions and the line now moved very swiftly. I bought my hard drive and splurged on a Kindle (I had borrowed Julian's while I was in the hospital and it was a terrific gadget!). The Kindle was on sale for half price AND came with a coupon for a $25 Staples gift card. But, it was 1:00 AM before I got back to Walmart.

     I hung out near the door, waiting for the line to end so the police would let me in without needing to walk both ways and through the cattle-shute, but the people kept coming! The cops stopped the line, finally, as the maximum capacity of the store had been reached! And the line was still out of sight.

     I walked to the end of the line, acquiring a carriage from another shopper who gave up. Two women had scooted ahead of me as I walked down, so I was right behind them, but the line was so long, we were about 20 feet from the start of the cattle-shute, at the corner of the sidewalk around the building. I looked around a bit and went into my zone.

     After five minutes or so, I suddenly realized that a couple had sidled up next to my carriage and were pretending that they were in front of me. This was NOT cool. The line move with a small start, then stopped and they definitely slid in front of me. The line was about four people wide, now, so I told the pair of women who had scooted ahead of me as I walked to the end of the line that I knew I was in back of them, but did they know who they were in back of? They pointed to another couple, and we figured out who was supposed to be where. The line started to move, and, as we arrived at the start of the shute, I told the cutting couple that I was in back of the two women, and that THEY were in back of me! They moved back. One of the women, the older one, asked me why I was wearing the mask. I told her that I had a low white cell count and she smiled and said, “That's what I thought.” She then told me that her sister had died a few years earlier from lymphoma.

     We chatted; the line became bearable. We all acknowledged that without the other two to talk to, we all would have quit waiting! We all wanted the same television, too, and fretted as time went by. The line moved with glacial speed. They were mother and daughter. I heard about the mother's sister in excruciating detail, but the woman also kept saying that her sister had a very rare form of lymphoma usually found in the very elderly. Her sister had a very hard death with many tumors.

     We talked about many things. Mom had never been in a Black Friday line before, so I told her about buying the Nintendo Wiis with Jack and how the line created its own order and enforced it. The deadline of 2:00 AM came and went. Mom and daughter had also acquired a carriage, abandoned by another shopper in the cattle-shute. The couple had also tried to grab this, too. Mom helped both her daughter and me to maneuver the carts through the zig-zags of the shute. We had a system after only a few zigzags, so by the time we were ready to enter the store, we were a team.

      Finally, we arrived at the end of the shute, near the doors, at 2:45 AM, but were forced to wait for more customers to leave, before we could enter. The man from the couple behind me was trending on my heels. I could tell that he planned to sprint past me as soon as he could. I had overheard them say that they also wanted the same TV that the three of us all wanted, but we had agreed that we preferred a raincheck, if only to not have to carry the TV that night!

     The cop came back to let 25 more people enter and I was number 13. We quickly wheeled into the store, channeled in the opposite direction from where we wanted to go, and the couple zipped past us as we slowed momentarily to look for an employee. We opted to cut through a path in clothing, directly to the middle to the store. There, in the central aisle, a blue-clad Walmartian was assisting customers by doling out DVDs. She was a little snippy, but directed us to the area where they had been handing out the rainchecks for the TVs. The raincheck person was gone. Daughter was ready to quit, but I said that I wanted to talk to someone at the courtesy desk. 

      The entire front of the store was cordoned off, with Walmartians guarding the checkout line (which wound throughout the store and must have been at least 90 minutes long). I asked a Walmartian if I could cut across, gesturing to my empty carriage. He lifted the tape and the three of us sailed through.

     There wasn't anyone at the desk, but, after a minute, a woman came over to tell me that the desk was closed. I told her that I'd been in line for over two hours (it was just after 3:00 AM) and that all I wanted was a TV raincheck. She smiled and said that she could help. She reached out to open the locked door behind the counter and circled around, pulled cards from under the counter, and handed me one! Mom and daughter had started to leave, but lingered to see me acquire me card, and came up. I assured the Walmart manager (or that is what she was) that the ladies had been right in front of me the whole time, so she gave them cards, too. Then, she proceeded to check us out, letting us bypass that horrendous line!

     I was overwhelmed. Daughter suddenly apologized for cutting in front of me to check out, but I told her that she was in front of me in line, so it was no problem. We all waited for the others to complete our purchase and left together, laughing and congratulating each other. I was completely enervated. I was so tired that I had some difficulty in driving home but there weren't many people on the road. I collapsed onto the sofa and slept soundly for eight hours. I'm getting ready to make pineapple upside down cake for my contribution to dinner.

     I'm pretty sure the manager gave me the rain check because of my mask, then extended the courtesy to the ladies because I vouched for them and for fairness for them, too. The funny thing is, if the couple hadn't cut in front of me (again), they might have followed us and gotten TVs, too! Occasionally, there is karma, even at Walmart.

Itchy

My tummy scar itches tonight. I really haven't itched for months, as I haven't made the kind of white blood cells that cause you to itch (those cells are called eosinophils). This has been the one good thing about not making enough blood, but if I'm now making eosinophils, I'm probably making other white blood cells, too, which would be good. I'd really like to make all of the right kinds of blood cells, once again, and not have to worry about infections.

The itchy scar is the one from my colostomy. It's about four inches long, now, and runs along my waist on the left hand side. I've got a bunch of other scars from various instruments used during the less invasive procedures. Eighteen months ago, I had my gall bladder removed endoscopically. My surgeon made four, one-inch long incisions to allow access to my innards – one high and about midline, one about in the middle but on the right hand side, one low on the right side, and one right above my navel. That one was a double – I had also been opened up on the same site previously, during my colostomy repair. I have a couple more scars from that surgery, but they've faded. I expect most of the small scars to fade, but the big one is mine forever.

My navel doesn't look the same anymore, either. Somehow, the scars have made it a lot longer. A funny thing happened to it after the gall bladder removal.

I'm highly allergic to adhesive tape and to the weird stuff that the nurses paint onto surgical wounds, underneath the paper tape that is supposed to be anti-allergenic. I almost went insane from the itching after my gall bladder surgery; the itching was much worse than any post-surgical pain. I had to leave the dressings alone for a whole week. My surgeon finally let me wash it all off but it was too late. In all of the places where the goop had touched me, the skin was severely swollen, bright red, scaly, and itchy – the bright red of a baboon's butt. My belly button is an innie – with the cut surrounded by all of the swelling, it looked like I had a second vulva and vagina - bare - on my stomach. And it itched! I couldn't stand to have anything, especially clothing, touch it or any of the wounds. After too many more days (they felt like years) I was allowed to use cortisone cream, but my navel was....wrong...for months. I'm still a bit self-conscious of it, as it isn't the belly button that I remember. But it no longer resembles a second set of female genitals, to my great relief.

Just remembering how itchy I was, has made me start scratching my face and abdomen, all over again! I suspect the worst tortures involve the application of itchy things.

Waiting game

It's nearly Halloween and I still do not have a definitive diagnosis of what happened to me, four months ago. I'm scheduled to have my third bone marrow biopsy in two weeks, and the results should be final two weeks after that. I've had frequent blood tests during my visits to the Leukemia and Bone Marrow Transplant Clinic at Mass General. Nothing changes very much - my cell counts hover between low-normal and below normal, but not so low as to require any intervention. I'm tired a lot of the time, but I went back to teaching at Holyoke Community College in September. I was losing my mind, just hanging out at home.I've got three classes - two developmental math classes and an anthropology class.

I had a minor setback last week, when I apparently contracted a minor virus; I spiked a fever of 102, but it only lasted about 12 hours. Still, I dutifully reported it to the clinic and was sent to Cooley Dickinson's ER for anther round of blood tests. The results were almost identical to the tests I had had five days earlier, at MGH. Another health annoyance - I tore part of my right quadriceps, picking up a bicycle in the garage. The tear might have been caused by the antibiotics I had to take after I got out of MGH in June, when my white count was so low. It hurts, but it's better to have torn the muscle than to have contracted sepsis. I like being alive, even though I'm cranky at times.

 I'm just so IRRITATED at the waiting game! Dr. Ballon thinks that my bone marrow was suppressed in June by a virus, but we'll never know which one. The most likely candidate is Fifth Disease. But, I may still have lymphoma, as well, but if I do, it is very slow growing. I need to ask Dr. Ballon about my prognosis after the next biopsy. Until we have some real data, it's all up in the air. I'm not a patient person, so having to wait and wait and wait for results just drives me CRAZY! But - it's my body that's not giving clear messages, so it's not her fault.

I'd like to have one full year - 365 days - of a good job, ordinary personal relations, and nothing weird. I want to have a boring, "normal" life for just one year. I've had a soap-opera life for too long.

Cancer patient

On Friday, June 21, 2013, my life changed. I had been feeling poorly for about a month and had barely moved off of my sofa since the previous Tuesday. My doctor's office called at 2:30 PM to check on me. I had visited on Tuesday, when I had been diagnosed with probable pneumonia. I still felt terrible, with fevers and chills, heart palpitations, and no breath. 

I was lucky that the office called; I had been thinking about calling them from days but I just didn't have enough energy. I now know that I might have died, had I continued to wait and not gotten treated. 

I see doctors at the University of Massachusetts health center; since it was summer, they closed at 5PM on Fridays for the entire weekend. The nurse who called offered me a number of choices: she could send an ambulance which would take me to Holyoke Hospital, I could go to the Cooley Dickinson Hospital ER, or I could come up to their walk-in clinic, if I could get there quickly. Since I know the doctors at the clinic, I opted to drive myself, but I told them that I wasn't sure I had the energy or enough air to walk up the hill from the parking lot, into the clinic. The nurse gave me a number to call to have someone come out with a wheelchair.

I drove the 15 miles slowly and carefully; I had forgotten that there was construction taking place on “The Notch”, the road over a small mountain range between Granby and Amherst. Traffic was stopped in one direction and it took about 20 minutes to negotiate the mile-long pass. I knew that driving myself had been a mistake. My vision became clouded by giant black spots and I had to pant so I wouldn't faint from the minor change in elevation decreased my oxygenation past the point of no return, but I made it. I parked in an emergency parking space, close to the entrance. I called the number and Eric, the receptionist, came out and wheeled me up the ramp, then immediately settled me in one of the examining rooms. One of the medical assistants came in and took my blood pressure; it was about 150 over 60, a very weird reading. My heart rate was over 90, despite my sitting quietly in the wheelchair.

I was immediately seen by Dr. Rosen, a small and kindly gnome. I had seen him before, occasionally, when my own doctor was unavailable. It was now after 4PM and he was concerned that, if he completely examined me first, there would not be enough time to perform any tests as the onsite lab closed promptly at 5 PM. So, he immediately ordered a battery of tests, both blood and urine. He then looked into my face sharply and asked if it was normal that I was so pale. I was startled; I hadn't looked in the mirror so I was uncertain but I said, “No.”

Ethyl, the medical assistant, wheeled me down in the elevator, where the phlebotomist allowed me to stay in the wheelchair while she did her job, rather than have me climb into one of her couches. She, also, commented on my pallor. She wheeled me down to the handicapped bathroom in radiology to produce the urine sample. The x-ray tech, another phenomenally kindly woman, wheeled me back to the waiting area, where Ethyl came for me a few minutes later. No one had called her; she thoughtfully returned when she realized that I was not back in the exam room.

I had barely returned to the examining room when my doctor, Dr. Rouzier, followed by his medical student, burst in, asking if I knew what the labs had shown. I said, “No, I just got upstairs.” He said that my blood levels were very low and that I needed a transfusion, so they would be sending me to Cooley Dickinson Hospital by ambulance.

We talked for a bit about why I might have such low blood levels. He looked very concerned, as did the student. He asked whether I had been vomiting or passing blood, or if I had any vaginal bleeding. I hadn't had any bleeding that I knew of. Dr. Rosen returned to examine me before the ambulance came.

Dr. Rosen informed me that he had to examine my breasts and do a rectal exam. I sighed. Ethyl came in to be a witness. I removed my shirt and bra, baring my breasts, and Dr. Rosen quickly palpitated them. There was nothing. Then, he asked me to roll over on my side. I took off my ortho boot, as it was hard to balance on the examining table with it and unzipped my pants and pushed my underpants down, slightly. This was a new experience for me and I was scared, so I had to crack a joke. I said aloud, “Relax and think of England.” Both Ethyl and Dr. Rosen guffawed, then Ethyl helped me to balance on my side as Dr. Rosen stuck his gloved finger into my rectum. He collected a small sample and placed it on special cards, to check for rectal bleeding. There was none. I pulled my clothes back up and Ethyl hooked me up to an EKG machine to take a trace.

In the interim, I had made a number of phone calls to John, Maripat, and Jack. I knew that my car would have to be removed from the fifteen minute space it occupied and I desperately needed emotional support. I also needed to know that my cat would be cared for if I was going into the hospital.

Maripat and Julian had been playing golf in Amherst; they got a raincheck for the rest of their round and came quickly to UHS. Maripat sent Julian inside. He would drive my car to John's house. By and by, John arrived, also. They took my keys and I told them all that I knew. John had already been on the phone with his friend, the chief of radiology at Cooley Dickinson. He thought that I would have an immediate CT scan, followed by surgery to close whatever was bleeding inside me. I doubted that I was bleeding internally; I had no pain or large bruises on my abdomen, just a flock of small ones all over my arms and legs.

The ambulance came and they loaded me up. Dr. Rouzier gave me a big hug. John took pictures. Then, they wheeled me into the ambulance. The EMTs installed an IV line into my left arm at the elbow and we were on our way. They continuously monitored my blood pressure and pulse, and also took an EKG trace. They hit the lights and siren at every intersection. We arrive at Cooley Dickinson in record time. I was promptly wheeled into an exam room. On the way in, a sarcastic-sounding doctor asked what I thought my problem was; I said that my heart was racing and I couldn't catch my breath. He wrote on the big whiteboard, “woman with anxiety.”

The nurses, doctor, and technicians quickly took more blood samples and yet another EKG trace, then a chest x-ray. About this time, Maripat, Julian, Jack, and Kirsten arrived. All were required to don masks before they came into the exam room. Julian found a white-board marker in my room and drew teeth and a nose on his, then the others all did the same. The silly masks kept me cheerful in spite of my fear. John came and went; he is always very uncomfortable in hospitals and this was no exception. A nurse announced that they would be giving me four units of whole blood, and that it would probably take all night. The ER nurse started a second IV port, just below the first one. They started the first unit around 9 PM. They had to monitor me, to see if I would have any allergic reactions to someone else's blood. I was fine. Eventually, they admitted me to the hospital. We made quick plans: I needed underwear and the charger for my telephone. And Jack had to catch my cat, box her, and bring her up to Amherst so Maripat could take care of her.

I didn't want to tell Margaret because I didn't want her to have another stroke from worrying about me. I decided to call her Saturday morning, after Jack got there, once we had some news. There's nothing as stressful as NOT knowing and being unable to help, but she needed to know. Jack and Kirsten came up to my room with my things around midnight and we briefly chatted; Catto had been successfully ensconced in Maripat's guest room, then the kids left. They had to return to Brattleboro for the night.

I had had no dinner and I was somewhat hungry. The ER nurse had offered me crackers but, of course, I can't eat them because I can't eat wheat without getting diarrhea. The floor nurse brought me a turkey sandwich, which I also couldn't eat as it was on white bread, then a container of vanilla Greek yogurt. I had never tried vanilla yogurt before; it wasn't bad and it filled me up enough. I talked with Dr. Stanley, the hospitalist who admitted me to the floor. After midnight, they finally started the second unit of blood and gave me my routine asthma medications. I had to be monitored before and during the transfusion. My temperature, blood pressure, and pulse oximetry were all taken every fifteen minutes. Since each unit took about two hours to be transfused, I didn't sleep until the last was completed, at about 5AM. Then, I required routine monitoring at 6AM, so I was awakened. I stayed awake until after the shift change and another monitoring, then fell asleep until the hematologist arrived, about 8:30.

The hematologist told me that he thought I had aplastic anemia and that I needed a bone marrow biopsy to diagnose it and, while he could do it, I would be better off at Mass General Hospital in Boston. This really surprised me; I admired how he did not let his ego stand in the way of my best interests. He also thought that the biopsy should be done as soon as possible, but he would need to see when a bed might be available. He thought that, while it was possible I could be transferred that day, it would probably be Sunday or even Monday. He left to make arrangements.

I ate breakfast slowly. I was hungry but at the same time, I wasn't. I was very frightened. Why had  bone marrow apparently failed? I wasn't making ANY blood cells – red, white, or platelets. It was a mystery.

I called Margaret around noon, about the same time that Maripat and Julian arrived at my room. Again, they had to wear masks and gloves, so Julian decorated them. I told Margaret that I wasn't making any blood, but wasn't specific about what the cause might be, as we really didn't know because there wasn't enough data, yet.

Shortly after one, the nurse came in and told me that Mass General had agreed to take me that afternoon. Arrangements were being made with the insurance company for an ambulance to take me, and it should arrive in about an hour! Maripat and I quickly packed my belongings. After the transfusions, I felt MUCH better – no more palpitations and I was lively and able to think a lot more clearly despite my lack of sleep. Of course, the ambulance didn't come until about 3PM, but we were ready for it when it arrived. 

I had to wear the mask, now, as the EMTs pushed me through the hospital, and, as with the ambulance the night before, I would have to be continuously monitored, or insurance would not pay for the trip. I had more red blood cells so I felt better but I was at risk as my platelets and white cells were still low despite the transfusions. These ambulance attendants were completely different from the ones who had transported me from Cooley Dick to the rehab center after my emergency colostomy, three years ago. Those monsters treated me like I was rotten meat; these were very pleasant and even funny. I chatted with the one in the back the entire trip. He was a pleasant biology grad student in his late twenties, married but no kids (yet). I took off my mask in the ambulance but replaced it once we got to Mass General. They kept me distracted from fixating on my illness. 

I now had a massive blistery-looking bruise on my upper arm from the blood pressure cuff. I'd never had THAT happen before. Low platelets, I guess.

I was taken to the tenth floor in the Lunder Building. The Lunder Building is pretty new; it was constructed within the last fifteen years and it was designed to have the top patient floor, the tenth, be as safe and comfortable as possible for immuno-compromised people. Every room is a single and is completely handicapped accessible. In addition, the rooms are positive pressure and the air is highly filtered and air conditioned. Every room has huge windows, a sofa-bed, a recliner, and a mini-refrigerator, for the comfort of patients and their families. My new home was room 1080, on the yellow side.

Dr. Amrein was my hematologist while I was there. I was questioned and poked and prodded. Copious blood samples were taken and another chest x-ray was performed. He told me that he suspected that I had Hairy Cell Leukemia, but that he would not perform the bone marrow biopsy until Monday. There were other tests that he wanted to run, first.

On Sunday, I had a PICC line installed in my upper right arm, then I had a flood of visitors. Bill Collins, Neil Fennessey, Amysue Chase, and my cousin, Jonelle Angel all came, one after another. At one point, I was given another chest x-ray, to verify the placement of the PICC line, while Bill was visiting. They did the x-ray where I was sitting on the sofa! We worried about anyone in the next building but the tech MUST know what he's doing, right? I was also visited by the chaplain, who said a prayer after being deeply amused by Neil and Bill. Bill made plans for the UMSFS reunion, Neil brought a box of “medicinal chocolate.” Amysue brought books and a lovely knitted shawl. Jonelle gave me hope. After my visitors left, my nurse removed my IV ports as they were no longer needed, since I had a good PICC line giving direct access to my vena cava. That was a relief; the IV ports hurt very badly and I had massive bruises from them, too.

Monday was the bone marrow biopsy. One of the blood tests of the previous day had not been positive for Hairy Cell Leukemia, so my illness was still a mystery. Maripat and Jack arrived just as the biopsy was finished, so I was distracted from the pain as the anesthesia wore off. I stayed lying down for an hour after the biopsy, to make sure the wound scabbed over, then I walked around the floor for the first time with my nurse. I was shown the kitchenette, where I could get snacks and store frozen foods. I had to have the dressing on my PICC line changed because it had been bleeding a lot and it needed to be checked by the PICC line nurse. She couldn't flush it after she changed the dressing, but the problem was positional – she had my arm outstretched and that placed stress on the line. My arm has to be at my side for the line to work. My night nurse figured this out!

Tuesday, I talked to a physical therapist and was assigned exercises. I did three laps of the figure-8 that comprises the tenth floor. The patient and family lounge on my side overlooks the Charles River, while the lounge on the other side overlooks the city. I need to look at a map to really appreciate what is where.

I need to figure out who my nurses are. There are no CNAs. Nurses serve twelve hour shifts and they do all of the direct care and patient education. This is VERY different from Cooley Dick, where almost all of the hands-on care is performed by CNAs who are poorly paid and occasionally cruel.

I had the same day nurse for several days; all of the nurses were terrific. They came quickly whenever I pages them and they TALKED to me, teaching me about my illness, as much as possible.

My red blood count was lower than they allow it to be on Tuesday, so I got a unit of packed red cells. I got another at noon on Thursday, even though the count hadn't dropped, because I went home Thursday afternoon, June 27. They didn't want it to possibly drop before I came back on Monday, July 1, for testing and to see another hematologist, Dr. Karin Ballon.

My diagnosis had changed, again, as part of the bone marrow biopsy results had come in. I was no longer a probable leukemia patient; once again, I was an aplastic anemia patient. I had the dressing on my PICC line changed again on Thursday. I was developing blisters where the adhesive touched my skin, just like when I had the colostomy bag glued to my abdomen. I told them that this would happen but they didn't want to use any steroids which might further suppress what little immune system I have.

I was sent home with a big box of PICC line supplies. John picked me up and brought me to his house. Maripat vacated her yoga room (Jack's old room) with its low twin bed for me; the double-sized guest bed in the guest room was too high for me to be comfortable in it. I stayed there until
July 10, when I finally went home.

Jack drove me to Mass General on July 1, to go to the leukemia and bone marrow transplant clinic. They drew blood for a CBC and liver chemistry. My biopsy results were still not in, yet. My blood counts had improved, the platelets to the bottom of the normal range, but my white count and especially my neutrophil count were the lowest they had been since all of the transfusions, but my reds had increased a little. I was given an appointment for the following week.

Again, Jack drove me in on July 8. This time, all of my levels had improved, which meant that I was making blood, again. Still, my white and red counts were below normal, but both they (and even my neutrophils) had increased over the course of the week. In talking to the doctor, I was no longer diagnosed with aplastic anemia (I guess because I had spontaneously started to make blood, again). And the full report on my bone marrow biopsy was finally available. The pathologist thought that I probably have B cell lymphoma, despite his not finding any cancerous cells in the biopsy. His reasons were that I had an unusually large amount of lymph in the marrow, and the marrow was also abnormally thick. Also, the percentages of the different types of cells in my marrow was very abnormal. Although he did not find any cancerous cells, some of the tests did not have enough cells to definitively say that there was no cancer.

My hematologist did not agree with the pathologist. She had examined me; I did not have any of the other symptoms that she would expect to see if I had lymphoma, such as enlarged glands and abdominal differences. She thought that I might have had a viral infection that silently damaged my bone marrow, from which I was now recovering. She thought she might want to perform another bone marrow biopsy in two weeks. She would make a final decision after the results of a CBC, to be performed the same day. So, I was to return on Monday, July 22.

I chatted with a teenaged boy in the waiting room, before my appointment. He was also from Western MA. He had an unusual blood condition, with some similarities to aplastic anemia. His girlfriend had aplastic anemia, though. He asked if I had been on Lunder 10; we bonded a bit over this as I guess admission there is proof that you have something really bad. He needed a unit of platelets, so off he went to a treatment room.

Am I , or am I not, still a cancer patient?