Mom’s been living with us for a week, and I’m exhausted. I don’t mean to sound whiney, but I seriously feel like it’s been a month.  It’s amazing what a good night’s sleep can mean to a person’s attitude; and how lousy mine is without one.

That said - my job has also been incredibly stressful this week, so the combination of mental exhaustion from work and physical exhaustion from home have taken a toll. Today I lost my patience with her as we were trying to get her in the van and since she was already frustrated at her lack of coordination, she cried. Yeah, I suck.

One of her co-workers brought some lasagna and Martha Harps rolls by this afternoon, so at least I didn’t have to cook. (thanks Melanie!!) Did I mention it’s also my birthday? I spent it being tired and frustrated. Not as much fun as spending it being pampered and inebriated… but equally sleep-inducing.

I did get a new blender and a little wedge thingie to put my laptop on in my lap, and some sweet cards from my fambly. Oh, and chocolates and cheesecake. So what the hell do I have to complain about??? I’m sure it will all be better in the morning.

Have I said I won’t complain any more?? Okay, this time I MEAN it!

Step 1: Plan to leave work at 2:30 p.m, but be swamped until 4:30. Cuss on the way to the car.

Step 2: Head to the daycare to pick up your son (ignoring speed limits). Forget to leave birthday party invitations for son’s friends… Cuss. Drive back to the daycare to put them in the cubbies.

Step 3: Speed to your house (disregarding even more speed limits) to unload all the stuff in your van to make room for mom’s walker (Texas Ranger), bedside potty, and wheelchair.

Step 4: Pretend that there are really no traffic laws at all… pull into the covered entrance to pick up mom. Throw keys in purse. Decide not to take purse so that your hands will be free to help mom. Lock door. Close door. Cuss a lot more, apologize to your son.

Step 5: Call Pop-A-Lock.

From there on ($43.50 later…) it was fairly standard… just start here, and skip all that other stuff. Except the cussing… that’s helpful no matter how smoothly things seem to be going.

This weekend my sweet hubby made me get some sewing done and “relax”. :) What? Was I coming across as being STRESSED??!!!??!?! I am two weeks away from the first major fund-raising event I’ve managed since getting my new job in May, mom is going through what she’s going through… I have teenagers… yeah, you could say I’m a little stressed. I’m so lucky to have my hubby to make sure I’m taking care of myself. And my co-workers are doing the same thing. I guess working for a cancer-care organization that includes social workers who specifically deal with oncology patients and their families is a good thing. Weird how the universe provides these kinds of blessings.

Four weeks ago tomorrow we found out mom has a mass in her brain. She FINALLY got started on her treatment last week, but she also had a horrible time with nausea (related to her diet, not the treatments) and is now in the hospital. Her doctors are getting her meds evened out, and she’s working with a physical therapist to gain some mobility that she’s lost on her left side.

Erin and I have talked about how we can manage mom’s care when she goes home. The doctors say they are trying to get her to the point she can do that, but she has essentially lost all control of her left side, so I’m not sure how effective that therapy will be. I have an electric chair available for her, so she won’t have to drag a walker around, but even then, she won’t be able to get on and off the toilet and into the shower and such on her own… Erin and I may divide up days working from her house, or if we can find friends and others to help her during the day, we can go out there at night.

While my brother, Brian, was here last week we met with mom’s attorney and went over the plans she has in place for her care. Her attorney also talked to us about what we need to keep in mind if we want to get mom qualified for Medicaid. Hopefully, we won’t get to that point, but we need to have all the info we can get just in case.

Tomorrow - back to work.

Mom’s first radiation appointment is tomorrow at 10:30 a.m.  I’m so… what? Relieved… and thankful.

But also incredibly pissed that it took three weeks and three days to get to this point. And I know that I shouldn’t look back and say “what if”, but it occurred to me today that when she met with her regular doctor and gave her a list of her symptoms, and the doctor said “none of these are good”, perhaps that doctor should have recommended a CT scan at that time. I mean, if you tell a patient that their symptoms could be caused by a tumor - why wouldn’t you want to immediately rule that possibility out? Instead, she just scheduled an appointment with a neurologist for a week later. And before that happened mom fell and went to the ER and found out she had a mass in her brain.

I guess that’s not helpful thinking, but I need to focus my frustration somewhere, so there it is.

Today was another bad day, worse than yesterday actually. Mom was nauseated all day, couldn’t eat, was not able to get to the bathroom on her own, was in pain all day… her surgeon’s office prescribed an additional pain med, but when she took a couple she immediately threw up.

Thank god my brother is here! I don’t know if he believed my sister and I when we told him that this only happened today. And of course, we are concerned about whether or not this is going to continue past today. If it does - who is going to care for mom when Brian goes home? It’s scary… the way our lives are going to be changed for the next few months.

Yesterday marked the third week since finding out that mom has a tumor. But overshadowing that event in my blog tonight, believe it or not, is the experience of taking my 16-year-old out to drive last night. She wanted to drive, and I didn’t want to cook, so I had the best of both by ordering pizza and letting her drive me to pick it up. Other than the one right-hand turn when I was making the “We’re gonna die!” face while saying, in escalating volume and tempo “turn… turn… TURN! TURNTURNTURN!!” she did really well. It was disconcerting - feeling like I had no control over my own safety. I could suddenly empathize with my mother’s sharp intakes of air when I drove her around as I learned to drive. It was SO annoying when I was 16, but I know now that she absolutely had no control over that sound escaping her lips. I forgive her.

Last week, when we thought my son might have diabetes, (did I mention I live in Crazy Town??) I told my son we’d go get him some goldfish. We followed through on that promise a few days later and have been watching the fish, “John” and “Bohn”, as they made themselves at home in our yard-sale 10 gallon tank and Freecycled tank pebbles. We added some plastic dinosaurs and little green plastic trees for excitement in the tank.

Unfortunately, John was called home to the Koi pond in the sky today. We went in to Griffin’s room to read a little before bed and he noticed John floating right away. He wanted to touch him, and did, but wasn’t sure about how to dispose of him. I suggested the old standard - the porcelein coffin - and he thought that would be fine. As he flushed, Griffin said “There he goes!”, then “Bye John!” Obviously he doesn’t have any problem with attachement issues.

My brother came in tonight to spend a few days with my mom. Mom went with me to pick him up at the airport. I think she didn’t want to be “frail” when he arrived; didn’t want to be seen as unable to meet him…

On the way she and I had a good laugh about the fact that she couldn’t get her shoes tied, her pants were twisted around sideways, and her shirt - which didn’t match her pants - was on backward. She’s having trouble figuring out how to get clothes on straight, and ends up with shirts backwards even after making several attempts to correct her confusion. I warned her that Brian would probably wake her each morning with a comment like “are you still alive??” We’re not very concerned with what’s proper or appropriate, my siblings and I. Or, at least, Brian and I. Humor heals. And we’re aiming for LOTS of healing. It can’t come too soon, either. She had a seizure episode today and has been prescribed another anti-seizure medicine to go with the Dilantin. The episode had her confused and tired, but by this evening she was in good spirits. That’s important - for all of us.

Tomorrow will be three weeks since mom went to the ER after falling and was found to have a mass in her brain.  We now know what kind of mass it is - a tumor, and what kind of tumor it is - a grade 4 glioblastoma.  What we don’t yet know is when her treatment will begin.  It is becoming very frustrating to be on the waiting end of this thing.

I realize that there are a lot of necessary steps involved in getting someone set up on a cancer treatment plan - and no one wants there to be any mistakes made - but should it really take this long??  As a nurse in her oncologist’s office said the other day when we told her we didn’t know when her radiation treatments would begin… “this isn’t toe cancer.”  I couldn’t agree more.  If there is a waiting list, it seems like she should be at the top of it, doesn’t it?

One of the first things I did for mom when she was in the hospital was buy her a journal to write in.  She has always kept journals, writing in them every night fairly regularly.  But somehow I thought having a mass in one’s brain deserved the purchase of a new journal dedicated to this journey we’re taking.  I have been pleased to see it sitting on the table next to her when I’ve gone over to the house.

I would guess a lot of what she’s writing these days is frustrated and angry, but I hope it is a place she can put a lot of her feelings she can’t talk about.  We are all optimistic, but that doesn’t mean we don’t think of the negative things that could happen.  If we don’t want to talk about it, we need to at least be able to put those feelings somewhere.

The docs told me yesterday that they would schedule a visit with an endocrinologist for Griffin after the news that he had elevated blood sugar.  Today his nurse called to say that when she checked here in NW Arkansas, none of the not many endocrinologists here work with children Griffin’s age. So, we were going to have to go to Little Rock to Children’s Hospital.

But that’s not all! We needed to go TODAY. More F words were uttered. Tears shed. Panic ensued.  Then we got another call saying that I needed to get Griffin to the doctor’s office here first, to get an updated set of results from a urine test and blood sugar test.

I’m too tired to explain the entire day. Just suffice to say that we went in, got normal results, rejoiced with relief, then were told the hospital still wanted us to come down, cried some more, went to be with mom during her first visit to the radiation oncologist, got a call from the hospital saying we DO NOT need to bring Griffin down, rejoiced again, and went out to eat at Outback.

I’m pretty much just exhausted now. But my boy is healthy, and we bought him two goldfish to celebrate. Hopefully the fish (John and Bwohn) will survive the night…

Today was the day my sister and I went to the neurosurgeon’s office with my mom to get the results of the biopsy done on her brain tumor over a week ago. I know, right??!! OVER A WEEK AGO!!! In dog time, or in child-with-parent-with-brain-tumor-time, that’s about 743 years. That’s what it feels like.

Anyway, my sister and went for that appointment at 3pm and were disappointed to hear that the news is not as good as we’d hoped. It’s an astrocytoma, grade 4 glioblastoma. There are not great things to report about these tumors, although mom’s doctor was insistent that every tumor and every patient acts and responds differently. Understandably, he wants to focus on how HER treatment will help HER and not worry about the other statistics.

On the whole I’m okay with the way things went today. Whether it’s a “good” tumor or a “bad” tumor doesn’t matter, really. It’s something growing in her brain that shouldn’t be there.

I was annoyed with the fact that she has yet to get any actual information about what is going on except what the doctor will tell her face-to-face. I know where he’s coming from when he says he will happily answer any questions she has, but I don’t think I’m unique in that I don’t know what to ask until I have something to read or some information first. Why they won’t provide her with basic “What is a brain tumor?” kind of info is beyond me. How can a patient make decisions just based on what one guy says? Seems a bit archaic.

But moving on… the day wasn’t over. I left my mom and sister to go take care of some of her paperwork at her HR office, and felt bad because if I was crying before I left the parking lot I knew my sister wanted to - but she wouldn’t when she was with mom.

So I picked up my son in between phone calls to my brothers to let them know what we found out, got home, and before I got out of the van I got a call from our family doctor. My son had been having some back pain and we had a urinalysis done last Friday which showed ketones, or protein, in his urine. When he saw that, the doctor asked that we get some blood work done to see if there was something going on with his kidneys. The nurse who called said they had found elevated sugar levels in his blood. She said our doctor would call me later, but that elevated blood sugar is a sign of diabetes. That’s kind of where the F words came in.

The good news, if there is any, is that his blood sugar was 169mg/dl, only a little elevated. And he also doesn’t have any of the classic symptoms of diabetes - frequent urination, weight loss, lethargy, intense thirst, etc… and the day he was tested he had a slight fever that had gone on for 12 hours, which can also cause elevated blood sugar. I’m hopeful that the meeting we’re going to have with the endocrinologist will show something other than diabetes, but it could be that we just caught it very early and his pancreas just hasn’t completely shut down yet.

After breaking all the shitty news to my hubby when he got home and having a cry with him, my mom came over - alerted by my big-mouth brother about my son’s report. (thanks Brian!) We all sat in the living room and laughed - believe it or not - about things and talked about stuff and generally agreed that today was quite a day.

Hubby and I then took the kids to Chuck E Cheese for some tolerable pizza and expensive penny arcade toys, and are ready for a good night’s sleep. Or some alcohol.

One benefit to working at a cancer support organization when you have a loved one involved with cancer treatment is the fact that you have some “insider information” at your disposal if you need it.  I mentioned to one of the social workers I work with that I was going to look for a tubseat for mom to help her get in and out of the shower easily. Christy told me about an organization in town called Sources. They provide loaners to people who need walkers, wheelchairs, canes and, you guessed - tub seats!

So today I headed over to mom’s during lunch to give her the seat and a few brochures and pamphlets that I found at work as well. While I was there she mentioned that she wanted to take the bandage off of her head where they did the biopsy. Sure, I’d help… of course I would! Cuz I’m a good daughter like that.

Taking the bandage off was delicate, since the tape used to hold the gauze over the incision was stuck to her hair. It was over the right ear, and I knew they had to cut away a lot of hair so I was expecting that. What I was not expecting was seeing a two-and-a-half inch wound in the side of my mother’s head. Of course I knew it was there, but that didn’t make it less shocking.

Lucky for me, a nurse had washed the hair in the hospital and done some cleaning up of the residual blood and “stuff”. But still - there was a serious indicator in front of me that someone had cut into my mom’s skull.

I apologize for grossing you out, but that’s what you get with me. I had to joke with mom that she looked like a zombie in a horror movie, and she laughed. I have done a lot of joking since this whole thing began, and I guess it’s just the way I handle things. I really think, though, that humor, and laughing a lot, is going to be important. I’m sure you’ve all read news bits about studies that show that laughter can enhance healing. I absolutely believe that. If that means I have to compare my mother to b-movie characters and poke fun at the very serious situation we are going to be dealing with for the next several months, so be it.

Mom went home today. I went by to see her at lunch and found out the doctor was about to come visit her, so I stuck around. He said we would be meeting with him next Monday to find out the results of the biopsy that should come back later this week and to discuss how the treatment will unfold.

Once we finally got her discharged a couple of hours later, we headed home. First stop was the Salvation Army to see if they had any walkers. I scored a great one for $15 - much better deal than this, which is almost exactly what I got. Sweet, huh?

We ran by Walgreens for her prescriptions next, a steroid for swelling and an anti-seizure medication. Then on to KFC for a three-piece combo meal. Then home.

She’s pissed. Thanks for asking.

It was a revelation to me today when I put myself in her shoes. As she tried to balance herself with her walker, as she thought out loud “how will I carry water to my bedroom if I have to use both hands to move with this thing?” She was ill, she went to the hospital and spent a week there, and she isn’t better. She can’t walk without help, she can’t use her left hand well, and she has a list as long as the Golden Gate Bridge of things she wants to get done. Most of us go to the doctor to get better - but she just found out that she may have something worse to go through before the “better” part comes around. As she said - it’s the shits. It was the pits the other day, but now it’s the shits. At least she’s getting comfortable using language that actually fits the situation.

I reminded her that people will be asking how they can help, and that she needs to accept that help. Not just because she needs it, but because they want to give it. When my friend was diagnosed with breast cancer I didn’t offer to help just because I’m a good person, I wanted to be able to do something. I wanted to take action against the illness that I knew was hurting my friend. Mom needs to be able to give that to her friends; the feeling that they are doing something. I think in opening herself up to the love and support others have to offer, she will be allowing their shared healing in as well. It will help.

We’re on our way now. The path is ahead, and next week we’ll get a road map. Hopefully it will be one of those really detailed ones with lots of colors and maybe even it will come with pushpins.