Not the post I thought I’d be writing next

In my mind, that would have been the one about what I think love is and is not. That one’s gonna be a doozie when I do get to it though, so check back.

This one is about my prediction for Blob.

Background info for this story:

1. I met Honey at church
2. I knew I was going to marry him within an hour of meeting him
3. I then failed at stalking him for the following month and had to get stupid drunk on Valentine’s Day to give him a reason to get all chivalrous and what-not so that I could have my way with him
4. It worked
5. My friend, R (I’ll not likely mention him again, but it would make him happy that I remembered his part in all of this) told me of Honey’s cancer before I drunk-trapped him – so stop feeling sorry for me. I knew what I might be facing. Kinda. Well, not really, but you get it.
6. I knew then that I would have Honey for at least five years.
7. I have an eerie way of knowing things that I might shouldn’t know (If I say I know something, even if I can’t explain it, I am usually right).
8. Honey knows my five-year prognosis (just in case you are wondering)
9. I had never worried about test results prior to that March one.
10. I was very anxious prior to the Columbus Day appointment
11. I was ambivalent for the most recent MRI – the one that indicates that Blob is “stabilizing” (more on that later – it is a story unto itself)

Anyway, I am pretty much tuned into what is going on with Honey at any given moment and right now I am not feeling the way I would like to. I shouldn’t be feeling trepidation, I should be feeling a lightness in my soul that is a reflection of the health and wellness of his being.

I don’t think carbo/avastin is going to do the trick for Honey. I think that whatever they try next (looks like another oral chemo with the avastin) will be the ticket to actually stabilize Blob and maybe even knock Honey back into remission. I believe that before Blob can show his nasty self again, there will be new developments in the field of gene therapy and THAT is going to be the ticket to getting Honey healthy.

I am still on the five-year plan. Looking towards the 10 year mark.

Every night, just about bed time, I thank The One that I will have Honey here tomorrow. I intend to have oodles of tomorrows.

Pulling The Rug Out From Under Me or No Shit – This Is For Real

I kinda’ fell off the writing wagon for a while there. I knew this was the next logical post in the ongoing saga; I just haven’t felt up to writing it. I’ve been rearranging the kitchen cabinets, doing laundry, changing out the kitty litter, hell – I even baked a carrot cake to bring to church for tomorrow – I am talking serious procrastination here.

Arrrrgh. This is so not easy….

Okay, last I told you Honey had been in ICU twice for seizure activity while he was taking oral chemo. In October he had another scheduled MRI; the first at MD Anderson since he began chemo… I think I’ve mentioned before that MRIs are always on Friday before Monday holidays or Monday if imaging is open. Visits with the neuro-oncologist are always on Tuesday. This particular set of appointments was wrapped around Columbus Day, so I had three full days to ruminate. I had no idea what to expect – and I was more than a little anxious.

We arrived at MD Anderson early for our appointment (not at all the usual for me). Got called in to get blood  pressure and pulse read by the nurse shared by both the neuro-surgeon (DrL) and neuro-oncologist (DrC). (She shall be referred to as SN for Super Nurse going forward.) Then we had some time to worry as we waited on DrC to arrive – w. Wait,wait, wait, worry, worry, worry, wait,wait, wait, worry some more and THEN enter the doctor.

Remember that when Blob first showed up he presented as a “wispy mass” and I just couldn’t wrap my mind around that description… This was my chance to see what that actually meant. Dr.C showed us the new image alongside the old. The difference was spectacular. In the original, Blob looked like a wisp of smoke – maybe even like your breath on a super-cold day. He had definitely hit a growth spurt in the past weeks, in the new MRI, Blob looked like a cloud on a spring day, when the wind is no more than a breeze.  The kind of cloud that looks completely innocuous and benign. Only this was neither.

***This is the part that I have been putting off writing about, so brace yourself***

DrC told us that the oral chemo was having no effect on Blob. (This was made patently obvious in the MRIs.) That we would have to switch to IV chemo. That his plan was for Honey to get a combo of Avastin and Carboplatin.  Avastin every two weeks and Carbo every four. He then proceeded to tell us that 25% of patients do not respond to this treatment. My heart fell – if he had told us that 75% of all patients respond well to this chemo-cocktail, I would have been so much in a better state of mind. Before I could find any words, Honey asked if he would be eligible for surgery if he fell into the 25%. DrC, responded in the negative… He told us that Honey would not be a candidate for surgery because of the risk-benefit assessment was not in our favor. That, given Blob’s consistency, they would likely remove as many healthy cells as cancerous (already mentioned in previous posting but worth repeating).

There I was, going all mama-bear on the doctors. Not a pretty sight, at all. They are not allowed to tell Honey “No.” (Nobody puts Baby in a corner.) It is MY job to keep Honey alive and I am not going to allow anyone to hinder me in my endeavors. I told them (DrC and the intern of the day) that I would rather have Honey paralyzed in a hospital bed in our living room than to not have him at all. That was when they informed me that we would not be able to find a reputable surgeon who would operate on Honey as surgery would only give him maybe five more months.

I swear that there used to be a rug under my feet.

What a major paradigm shift. Until that exact moment, Blob was not real. Or not a real problem. When Honey and I met, he was in remission. Of course if cancer came back, they would operate, remove it, radiate the hell out of it and we would be back at status quo. Bastards took that away my blinders. Bastards.

Just a quick aside that made me smile on the inside, where it counts.

By Saturday evening of our stay at St Luke’s, it was clear that Honey would not be discharged prior to Monday.  It is worth noting that Honey has some abandonment issues, so I felt it critical that I stay with him.  Also – bear in mind that he kept having seizures whenever I left the hospital…

Anyway, I knew I would need to find someone to stay with T after his weekend visit with his dad (Big T). Ideally, he would be able to stay with Big T, who hasn’t worked in two years because he was laid-off and hasn’t been able to find any job in his field (computer tech) anywhere in the Houston area. (Who’s thinking someone hasn’t made much of an effort to find work?) My assumption was that Big T would be available for his son until Monday morning when I would pick him up and drive him to school. I called on Saturday evening to let Big T know that Honey had been admitted to the hospital and ask if T could stay with him until Monday. Big T told me he would have to check his schedule (Seriously?) and let me know.

Sunday, after church, I called Big T again to check on extending their weekend together and was told that  I should make other arrangements for T. (Any jaws hitting the floor yet? They will…) I called friends and found a couple of places he could stay. I called Big T again and asked to speak to T to let him know what was going on.  When I informed T of his choices, he asked why he couldn’t just stay at his dad’s place.

I was stumped. I didn’t expect the question and didn’t have a ready answer. The only thing I could think to say in response was, “I don’t know, your dad told me to make other arrangements for you.” T asked me to hold on a minute and yelled, “Dad! Why can’t I stay here?”

I couldn’t have planned it any better. I could almost hear the screech of brakes as Big T started back-pedalling. “I didn’t say that. Your mom said she had other plans for you. Of course you can stay here.”

This is not the first time that Big T has demonstrated certain asshole tendencies –> his anger towards me affects his relationship with T. Although I firmly believe that he absolutely  loves T, I can see that love suffers under the shadow of his hatred for me. That is the only reason I can see for inconveniencing me being a better choice than getting an extra night to spend with the most awesome six-year-old ever.

I search out silver linings where I can find them and this dynamic has been a significant grey cloud in T’s relationship with his dad. Looks like the sun is starting to shine through.

Our vacation to L’hotel Ste Luke

So, there I was, juggling more balls than I ever had before (more even than college when I could  get just two hours of sleep and still do anything the next day). I was a mom, a wife, a step mom, a special education teacher, a friend, a daughter, an active member of my church community and a caregiver.  Only one of those jobs pays anything and unfortunately it isn’t the one that was top priority at that time. I tried so  hard to keep things separate; to isolate and to be fair to everybody who needed me when they needed me. Ya’know what? It didn’t work.

Honey was still on his oral chemo. He was still having what appeared to be mild physical side effects. He had broken a tooth, I thought that was related to chemo weakening his marrow. I was probably wrong about the cause of the broken tooth – but this will be significant later. (You just need to remember that he has a broken tooth; but it is kinda in the back so his red neck doesn’t show all that much.)

We had made it just about a month without any incidents of the Blob variety. We weren’t expecting any big deals for the weekend. T was getting picked up at childcare for his weekend with  his dad. Honey wasn’t driving anymore, so I was responsible for picking the boys up around dinner time and bringing them to our house for the weekend. First though, I came home for some critical down time prior to my next chauffeuring job.

I did say “critical downtime,” right? Guess what? Umhmm. Exactly.

I walked in the front door, said, “hey” to Honey and didn’t even get to sit down before we were discussing the seizures he had experienced that day. He said they were minor and that he wanted to just wait and see how they played out. We had done this before, I was not going to be vilified or classified as a poor excuse for a caregiver again because he was choosing to make light of the situation. One of the sister-wives (the three friends to whom I normally turn to when in a bind) came over to help get Honey into the car because he again had no control over his left side and could not walk on his own.

We finally got him out to the car by pushing him in the only wheel chair available, the rolling desk chair. Truly not one of our finer moments. For ingenuity we scored about 8.5; for practicality and ease of use, only 4.2.

Honey refused to go back to the hospital he was at the month prior because he found their food to be sub-par.  As I was driving this time rather than the EMTs, we were not limited to the nearest hospital and instead chose the Episcopal hospital five minutes further down the way.  For those of you who live near us – I would strongly recommend staying at L’hotel Ste Luc rather than the Memorial Suites.

ER staff wasted no time getting Honey into a real wheel chair and pushing him through triage. The nursing staff was fantastic, the ER doc great and the business lady was totally inoffensive. I was surprisingly less tense and irritated by this experience than I was the last time. Not sure if this was because L’hotel is more calming or because I was getting used to the process. I imagine it was more the former than the latter.

We were in our very own room in the short-term care area for a very long time. L’hotel Ste Luc wanted Honey to be transferred to M.D.  Anderson Cancer Center; they however, had no available beds. Our choices were to admit close to home or continue to wait for something to open up down town. Let me point out that it only takes 7 minutes to get from the hospital to our home (20 minutes in the opposite direction – but only 7 on the way home) and MDA is at least 40 minutes away if one drives in the middle of the night to avoid the slightest hint of a possibility that there may be other cars sharing the road, delaying your drive time. You should also know that MD Anderson is a teaching hospital, not so much so a treatment facility AND that it has an outreach care center at L’hotel Ste Luc. We had hit the trifecta on good reasons to stay close to home. Not at all a difficult decision. Really. So, at about 11:30 PM Honey was admitted and assigned a private room.

*Thankfully, I had remembered to call G & C’s mom to let her know that I wouldn’t be picking the kids up that evening.

Because Honey’s seizures present as stroke, he was again assigned to the ICU.  He was taken down for  an MRI, and I went home to feed the animals. I returned an hour later and was just barely able to get into Honey’s room as the ICU was not open for visitors. However, because he was holding court with the ICU staff, they took pity on me and allowed my entrance. This time I was not making the same mistake regarding sleeping arrangements. The recliner at L’hotel was seriously not designed for sleeping and we were still newly weds. It was brought to my attention the next morning that  ICU staff are not accustomed to finding two people in bed when they come for morning check ins. Then again, I don’t think they are accustomed to having someone not needing critical care in their ICU either.

Honey’s first trip to ICU was only two days long. I expected pretty much the same with this visit. (Have you noticed that my expectations never come to fruition?)  The plan was that Honey could come home as soon as he went 24 hours without having a seizure.  We enjoyed our stay at L’hotel Ste Luc for five nights. Whenever I left for errands, food, anything, Honey would have another seizure. Now, I am neither exaggerating nor inflating my importance in Honey’s illness. Just sayin’ EVERY time I left for the first 72 hours, EVERY time, Honey would have another seizure.   After five nights and four days, three uppings of the dosage of one anti-seizure med and the addition of a second anti-seizure medicine Honey was finally regaianed use of his left side and was released from ICU.

Spinning The World On One Finger

I can’t remember anything specific about the end of July/beginning of August – I am pretty sure it was spent in a haze of chemo and clock watching. Mid-August caught us up in the hustle and bustle of work and life outside of our home.  Schools in the southern states (or rather, not in New England) tend to start earlier in the year than they do up north. When it was time for me to return to the classroom, Honey was just getting acclimated to his chemo. Although I was concerned about leaving him – this was more related to his state of mind than his actual health.

Teachers usually return to work a week or so before students. I went for training on Wednesday, Thursday and Friday (T was back in childcare – his regular academic routine) and Honey was home – more than likely spending all day attached to his computer games. Things looked as if they were going to settle into a groove. I had a work schedule that I was kinda’ excited about. I was supposed to be co-teaching Algebra 1 all day – this would have been a perfect complement to having a husband with an illness. I would be doing something that I was already good at, something I wouldn’t have to do too much planning for and that would allow for me to take intermittent FMLA when Honey was wiped out from chemo without my students suffering too much for my absences,

Friday of that week was a banner day. That was the day that I was informed that the schedule I had expected to was not to be. Instead – I would be teaching a pilot program for online learning and resource high school math 1 and 2.  Not at all what I was expecting, but still manageable (I thought). Not being a co-teacher, meant that I would have to prepare my own classroom for learning and would not have the built in support when I needed to be out caring for Honey.  I left school a little bit late that day planning on having one last weekend with Honey, G and C before actually starting to teach again (at this point, our weekend custody schedules were not yet synched up).

The weekend was far too short. Saturday came and went in a haze of shopping during tax-free weekend and then it was Sunday. We got dressed for church (it is important to note that I dressed nicely – usually I just wear jeans) and went for our weekly dose of spiritual growth. Following services, Honey took G & C to pizza while I went home to read and be alone. Right about the time I started to wonder what was keeping them, I heard the kids coming in the yard. Enter G, enter C, enter Honey leaning on one of our friends as he couldn’t walk on his own. He’d had another seizure (remember – we had that one back in July) and they couldn’t get through to me because my phone volume was still turned off for church. He said it wasn’t a big deal – that this was just an affectation of the cancer and that we should wait before we take action. So, we waited. I watched as he lost the movement on the left side of his body. When his face went slack – I realized that this was no small issue. I thought he was suffering a stroke and called 911 for an ambulance.

Enter EMTs who also thought Honey was having a stroke, and who were clearly disappointed with me for not having called as soon as the seizure began. Nobody wanted to hear that I hadn’t had experience with cancer before – that I was following Honey’s lead; and frankly, in hindsight I can see their point. At the tim ehowever I felt they were berrating me excessively and unnecessarily. Before following the ambulance I called G & C’s mom to have her meet me at the hospital to get the boys. I still can’t imagine how stressfull it must have been for them to see their dad unable to drive and not to be able to get through to me to come help.

Fast forward to the local hospital ER. People were coming in and out of our curtained off “room” – the only thing I really remember is sending the billing guy away after I told him that I had only gotten off the phone with the MD Anderson switch board because I thought he was someone important. (I have a tendency toward bruskness when under stress – I blame it on being raised in New England – certainly folk brought up in the southern states have a more highly developed state of “nice” than we yankees.) Finally, Honey was admitted to the ICU. T’s dad had agreed to keep the boy child overnight and to drop him off for the first day of school the next morning. I spent the night sleeping in one of those horrible almost recliners next to Honey’s side – leaving him at 6:00 AM in order to get to my first day of school on time. Thank goodness I had worn nice clothes to church, because I was wearing the same outfit to the first day of classes.

I pulled up my big girl pants and did what I thought I had to do. Towards the end of the work day – when all of my classes were done – I filled my principal in on what was happening in my world and asked if I could leave early to be with Honey. I must admit that I derived a small sense of self-satisfaction when my new boss said that she would not have known anything was amiss in my world based on her observation of my class. I drove back to the hospital and spent a couple of hours there before I had to pick T up from childcare. And, no, it didn’t occur to me that I could have asked anyone else to step up and help me. I honestly thought that I had to be all things for all people. My husband, my son and my students all “needed” me. (I never said I had a diminished sense of my own importance) and for the first time, I couldn’t handle it at all.

I don’t remember how many days Honey was in ICU that time. I am pretty sure that I took a couple of days away from work. I also vaguely recollect feeling guilty that I wasn’t able to do all that I thought I should be able to do for everyone. I know that following this stay, Honey did not return to work – instead he took some sick time while we tried to figure out what we needed to do to keep it all together.

Ain’t no cure for the summer time blues…

Okay, so we were somewhere at the beginning of summer; waiting for Honey’s MD Anderson team to come up with a game plan for taking Blob down.  We had been hoping to travel to the Pacific NorthWest in July to attend Oregon Country Fair (OCF) and to visit some long-time friends for a week but were waiting for the next appointment with Honey’s neurosurgeon before we made any plans.

Well, our next MDA appointment found us hurrying up to wait some more. We were told that an even more detailed MRI had to be done in order to show Blob’s density/consistency and that this would determine what exactly came next. We were also told that if we had the opportunity to travel that we should take it (for the record, that is not what you want to hear when you are meeting with your new husband’s cancer surgeon. Just sayin’.)

Anyway, we found great tickets that would get us to OR about four hours before the gates at Zumwalt (our campsite) opened. My bff had left a car for us at the airport in short term parking and we were on our way. Although we did miss the tailgate party while waiting in line for Zumwalt to open, somehow we ended up in front of all the folk who had been waiting in line since early that morning and secured the site we wanted for our crowd with no problem. Yay.

OCF was nothing short of fantastic. Honey was the prince at his own ball – everybody loved him (how could they not?) and continuously told me how lucky I was to have found my “The One.” He was so appreciated, that he earned his fair name during his very first visit. I’ve been in attendance seven times over the past 15 years and still do not have a fair name (not that I am bitter or anything). His fair name is Puck, just in case you were wondering.

Thursday we set up, Friday and Saturday we played and Sunday we broke camp and played some more. It was my most fun OCF ever – undoubtedly because of the company I was keeping. On Sunday evening, we caravanned back to Portland for the rest of our vacay. While there, we stayed with my bestie and her family. Her mom liked Morgan so much that she made him a vat o’soup and brought it over for a whole family sit-down (now that is love). We spent time down town, went to the Japanese Gardens and visited Multnomah Falls. It was truly a honeymoon worth having waited for.

We had a great time until Honey had a small seizure. (As yet another aside, Honey’s seizures present as body only and result in stroke-like paralysis of his left side.) Cue panic stricken wife, and action. We got in touch with MDA, got a prescription for Kepra and got on with it. Little did we know that this was going to be the harbinger of things to come for our next couple of months.

Upon returning to Houston, we went straight away to pick up G & C for the second half of our extended summer custody. Within days,Honey had had all of the tests and labs requested by his MDA team and we were on for our “how-are-we-going-to-treat-this?” appointment. This would be the last appointment with his neuro-surgeon (sounds ominous, huh?) in which we were informed that Blob was not operable because he was too wispy (damn that word – wtf does wispy mean, anyway? How can a lesion be wispy?) and that the team was concerned that they would take as many healthy brain cells as they would cancerous ones.  Also – if this happened it would leave Honey paralyzed on his left side as Blob was currently residing in the right parietal lobe on the surface of his brain. Nice. Cue more panicky wife and take 2.

It was decided that the most effective way to begin treatment would be for Honey to take five series of oral chemo that would run for six weeks each before beginning again. We lived by the clock; making sure he took his poison every six hours on the hour. Honey really didn’t suffer the common side affects of chemo. No weight loss, no nausea, no extreme weakness; he did however get depressed and cranky but that may have been the chemo, the cancer or just having to deal with me and my moods.

I tried to work out a schedule of intermittant FMLA (family medical leave assurance) with the school district in which I work and thought that all would be well. Or well-enough. Or maybe well-ish. Hell, I don’t know whatI was thinking, but it would appear as if I was overly optimistic about the expediency of treatment.

Next up: spinning the world on one finger

What?Are you trying to kill him before the cancer does?

Just as an aside – Honey and I have both been married before. We both have children from our first marriages. T(6) lives with us exept 2nd, 4th and 5th weekends. G(9) and C(5) both live with their mom and her new husband except for 1st, 3rd and 5th weekends. This works out quite nicely as it means that Honey and I get two child-free weekends a month and the boys have more time together to establish a “sibling” bond.

Anyway, back in September, when flu shots for this year first became available T and I went to our doctors and got ours. I got the shot just because I am tough that way. I really wanted to be the nice mom and let T get the flu mist, but it turns out that the mist has live virus in the vaccine (this would bring flu into the house and put Honey at risk) so he also braved it out and got the shot.

Okay, this is where this gets good.

At the time T and I got vaccinated I informed Honey’s ex-wife(N) that because of Honey’s weakened immune system, the boys really needed to get vaccinated. Easy enough, right? You would think so – but you would be wrong.

Two weeks ago, G and C came to our place for our weekend together. I took advantage of Friday night to go out with some grownup friends – so I really wasn’t around the children that night.

On Saturday. Honey was exhausted and went upstairs to nap (unusual b/c he normally naps on the sofa so we are still together as a family). I made lunch for the kids and all of a sudden realized that I had been hearing a really croupy cough from C for about the past hour. (Never said I was quick on the draw.) I called his mom and asked if the boys had gotten their flu shots and her reply was a passive yet oh-so-aggressive, “not yet.” My first thought was, “….the fuck, man, are you shitting me?” yet I bit my tongue and instead said, “I will be bring C home unless you want to pick him up.” N’s retort was, “Well, I took him to the doctor and he does’t have the flu.” Can you guess what my next thought was? My comment, however was a much kinder, “Honey is on chemo. He has a weakened immune system and when you two were still married he ended up in the hospital with atypical pneumonia when he was on chemo. Do you want to pick C up or shall I bring him home? I will not have illness in my house.”

I ended up bringing him back to his mom’s house and again informed N that the kids needed to be vaccinated. I told her that G really wanted to get the mist rather than the shot and if that was the route she wanted to go it would have to be during a window of opportunity that gave enough time for the virus to die off.

This was two weeks ago…. I picked the kids up for Thursday afternoon visit today and asked, “Did Mommy take you to get your flu mist?” I was so angry when the kids said they had not gotten it that I was at a loss for words (this almost never happens). So,there I was, left in the position of having to be the bitch who takes them to get a shot that is really gonna hurt a bit.

The only thing I could think was,”Are you trying to kill him before the cancer does, Bitch?” I have spent the last hour or so ruminating. I have come to the conclusion that she is the most passive-aggressive manipulative woman I have ever met and from now on I will take the bull by the horns (TX analogy) and do what needs to be done myself.

This was a lesson I needed to learn. Wish I had known how it was going to play out earlier – but I will certainly apply this knowledge to any future interactions I may have with her  that regard Honey’s well being.

I am still pissed by the way.

Meet Blob

Blob is the name I gave Honey’s cancer. We were initially told that he presented as a shadow. I hadn’t gone to MD Anderson with Honey that day. I went to work. His appointments were always very routine… MRI on Monday, appointment with neuro-oncologist to be told all is well on Tuesday. Well, on March 29th he had an MRI that I did not feel at all good about. Since we had started dating I’d never had any doubts about what the results would be. For some reason, I was nervous and tense on the 30th. I would leave work for a cigarette during lunch and usually called Honey at that time just to chit chat. Well, that day I was too worked up to be pleasantly social. I wanted to know what his doctor had said. Honey prefaced his response to my questions with a, “this is probably simply an affect of the MRI, but…” Something shadowy was near the cavity from his prior craniotomy.

How can an MRI show a shadow? What does that mean? Why couldn’t Honey tell me specifically what was going on? To whom must I call to get more informatoin?

Honey was told to sit tight and wait. Another MRI would be administered in two months. How was I supposed to wait eight weeks to find out what was going on? Really? The rug had been yanked out from underneath me. I’m (a bit of) a control freak and I could not be in charge of our current situation. Two months is forever. I’m pretty sure it was forever and a day for the people who had to deal with my weepy, bitchy self during that block of time. I’m sorry, by the way and thanks for being strong for me (you know who you are).

I went to Honey’s next oncologist appointment (on my birthday – just so you know). His second MRI showed that Blob was very slowly gaining definition. He appeared to be an underachiever. No problem to deal with. Honey had had a crainiotomy before, for sure thay could just open him back up and scrape that cavity again, right?

We would find out as soon as we could get in to have an appointment with the neuro-surgeon.It took another month and another MRI before we had our appointment with his surgeon. This was the appointment in which we would find out what course of treatment would be taken to defeat Honey’s cancer (I thought). Unfortunately, we had to wait another month, get yet another MRI and THEN get a treatment plan. Well – here we are at the beginning of the summer. This is where things really start to get interesting. However – to do justice to the story, I must come back later. Now I am going to hang with Honey. He has been slowly increasing the volume on the tv in an effort to distract me.

Peace.