Tuesday, September 20, 2011

It's A Good News/Bad News Kind of Thing

The good news: my hair is making a real effort to grow back. Besides the wispy hairs busy sprouting here and there, it is rapidly growing itself a serious patch of real hair all in one place.

The bad news: it seems to think that the year is 1985 and is distinctly and determinedly growing itself from the base of the skull into a...mullet.

Seriously. Who could make this stuff up?

And what, pray tell, am I to do with this rebel hair growth? Allow and encourage it until I look like Billy Ray Cyrus, or take charge of that hair and let it know in no uncertain terms that until it decides to favor the entire head, it is simply not going to be allowed to continue. I must admit, I am unsure.

Ah, well. Just thought I'd share another item for you to file in your "things you never knew cancer patients had to think about" folder.


I have decided it is time to start a slow but steady rehabilitation program here. Might work, might not, can't hurt, and can only help me feel like I am doing something positive to help my recovery along here.

Guess who figured out yesterday that she has a swimming pool in the back yard complete with a "therapeutic" spa built large enough for multiple children? That's right, me! I don't know why it did not occur to me before that water exercise is the absolute best kind for weak legs and weight issues. Probably because every time I get in the pool the kids mob me and it becomes a giant play fest, so I never associated the spa with anything peaceful and therapeutic at all. Well, that changed yesterday as I physically restrained the children in the house (with the help of two or three adults) and spent 30 minutes or so in toasty waters working those atrophied arms and legs. It felt great.

Similarly, as I prepare for Jennifer to leave, after two months of having her handle virtually everything for me, I spent time with my own calendar yesterday. That was way scarier. It took me a half hour, literally to plan two days of who needed to be where and who was taking them. I took copious notes, drove everyone around me crazy. I completely exhausted myself. But I did it. My calendar masters checked my work and I passed. But it was painful! Any rehabilitation program of mine, however, must include a mental aspect, so this is probably the most practical place to begin.

After, as I was floating in my "therapeutic spa" after my self designed physical therapy looking around at my yard and house, I was struck by how different everything looked since the last time I had been in the spa. I truly only get in the pool once or maybe twice a year, even though I like to swim, because I am always too busy and I really do think of it as just recreational for the kids. The last time I was in the spa I remember looking at our back porch and seeing how it needed paint, how the windows needed cleaning, how the potted plants weren't thriving, how I needed to change this or that about the house.

Yesterday, as I looked around I thought about how nice it was that we had such a large porch and sitting area, not to mention a pool for the children (and now me!) to use, I thought about how much fun we had picking out the now peeling (but potentially now "shabby chic" charming) planter jars when we were in Mexico. I thought about how nice the and green the grass looked and how great it was that I had had the energy the year before to switch the sprinklers out to water efficient ones that gave us this green lawn at a price we could afford! (I chose not to look at the vegetable garden at all, as a person can only come so far so fast.) I couldn't believe how critical I had been of the beautiful things around me only a few months earlier.

Clearly, rehabilitation is happening for me on three levels: physical, mental and attitudinal (is that a word?!). Three is a magic number, didn't you know?

Thursday, September 15, 2011

40 Years Old!

Wow. 40. It used to seem so old.

As it turns out, though, WHOOO HOOOO, I made it to 40, I made it to 40! Middle age? I don't THINK so! For me it is NOW, it is days with my family and friends. It is the gift of time which is ultimately our greatest treasure. May I spend every minute of mine wisely (and may you too, for that matter!).

Practically speaking , this year it was me getting my very favorite childhood cake and spaghetti casserole thanks to my dear friend who went to great lengths to make this happen for me (the cake traveled from our hometown of Carpinteria where several of her family members got involved, picked up and drove the cake from "our" bakery, down the coast and into the desert just for me). I felt pretty special about that. This is my same friend of 30+ years who has been here for nearly two months from Texas to take care of me. I will be lost when she leaves but so very blessed to have had this time with her. Who gets two months uninterrupted time as an adult with their friend like that? Great birthday gift--life gift!--for sure.

After three (three!) good days in a row physically, I had a bit of a slow day yesterday on my actual birthday. I was unable to go to lunch as planned or actually leave the house at all, but it didn't matter at all, as everyone was flexible, came to me and let me snooze on the couch as much as I needed to (which turned out to be most of the day). The kids brought me beautiful gifts that they had made or saved their money for and were so proud of, the best gifts ever. Overall, it was a great day, no matter how I felt.

Finally, and most indulgently, I have a brief cruise to look forward to next weekend to culminate this celebration of 40 years. I am going along with four friends for three nights on Carnival to Ensenada. Now, we booked this probably 9 months ago when things looked quite different for me physically. I may not be able to get off the boat in port and will be using a wheelchair onboard, but at this point it looks as if I will make it on the boat in the first place and that in itself is a victory for me right now. Park me on the Lido deck with a good book and an ocean breeze and I will be a very happy cruiser.

Thank you for all the birthday wishes. I never could have imagined how happy I would be to turn 40. Badge of honor, let me tell you.

Sunday, September 11, 2011

A Dose of Reality (Just A Little One)

It has been gently suggested to me that, although it is nice to be positive and upbeat about all that I am going through, that perhaps I have given at times an overly rosy picture of, or at very least glossed over the physical aspects of my current cancer treatments. Perhaps, this well meaning person suggested, I should let on a little more about what I am dealing with so as to "keep it real".

I have given this quite a bit of thought over the past few days. I have concluded that I write mostly positively because overwhelmingly that is how I feel spiritually, and how I feel spiritually guides all other aspects of my life. Further, I try very hard to not complain because unless complaining about something specific can actually cause the situation to change, I don't see that it does much besides bring me down. Having cancer is not fun, it is not something I chose, there is nothing I can do to change it, and all I can do is hope and pray for the best. Complaining about any aspect of this will add nothing positive to the equation.

Considering all this further, I began to think about what I want to read when I go to someone's blog that I care about. I want to know how they are really doing, truly doing, and I am also there seeking specific information about how I might be able to help them or, in the case of the cancer blog world, I might be looking for specific information about how they handled a side effect or how a particular medication affected them. I have definitely not given enough detail about any of the particulars of my treatment to be of any help to anyone who is searching for that kind of information, that has been invaluable to me from other bloggers who let me know if a particular symptom I am experiencing is normal. There are other forums for that, more medical in nature, but I have also benefited much from us regular bloggers just being real.

Given this now rambling thought process (and most of mine are now, sadly) I thought I would share a bit more about my physical symptoms since going through whole brain radiation. Let's be clear, though, that this is more of a reference list than anything else. You may not be interested (actually I would be surprised if you were) but I have concluded that I do owe all those who have fought this fight before me and those who will fight it after me an accurate assessment of what it feels like to go through this, at least for me. So here we go...

This is, by far, the most difficult thing I have ever faced physically and mentally in my life. I had no idea how hard, even when my doctor told me how hard it would be, that it would be this hard. The fatigue and weakness I have been experiencing is so intense that it is easy for me to understand why people, in different situations than I am in of course, say they would rather just skip treatment and let nature take its course. That was something I could never have understood before but now I get it. Don't worry, I am nowhere close to embracing that point of view for myself, I just simply understand it. I have way too much to live for!

Most of my physical issues, it seems, are tied to the nasty steroids I have to take to keep my brain from swelling. Long term steroid use is just plain unpleasant. We are trying to wean down the steroids but it is a process, particularly since I have several symptoms that tell us the brain is not done swelling. If the brain swells too much it could cause the kind of damage that would render pointless the types of complaints I have about the steroids themselves, so I am trying to keep that in perspective. But it is difficult to do, some days more than others. They won't be able to scan the brain for another month or so, so we are just guessing based on the symptoms I'm having as to whether a wean down is a good idea or not. Being more of a precision gal myself, this is frustrating.

If you have not seen me recently, you would be completely shocked at the change in my physical appearance. I look like a chipmunk. I'm not kidding. My face is round as the moon with multiple chins for decoration. I have gained 25 pounds in 6 weeks, mostly in my torso. That is the most uncomfortable part for me because I have little that fits my new body shape, and because it happened so fast that my skin is stretched so tight I am afraid I will tear myself if I turn too fast. It is as if I suddenly have to carry a giant bag of dog food strapped to me everywhere I go. This makes stairs particularly difficult.

I have become quite inactive due to the fatigue which is at great odds with the weight gain as you might imagine. My knees and legs, in particular, have become so weak that at times they do not hold me up at all and I need to just wait for awhile until I can get up. There is a vicious cycle here that must be broken, but since the steroid I am on mimics blood sugar issues I cannot stop eating enough to make a meaningful difference in weight loss until the dose goes down, as I begin to shake so badly that I cannot hold a cup without spilling or dropping it. That kind of shaking is so disconcerting and awful and only food stops it, so what do you do? You eat because it is scary to shake like your blood sugar is in the 60s when it really isn't.

The oral medication I am taking for my brain tumors (which, by the way, seems to have brought my tumor markers to an all time low of 16, so we are cheering that good news) likes to decorate the skin. I have had two different rashes from that, one itchy and thankfully mostly gone now, and another resembling infected spider bites on my arms and legs. Attractive? No. But not painful or itchy, so I am glad about that. In addition, it has given me the most extensive and long lasting case of acne I have ever enjoyed and that's saying a lot from me who never really outgrew my pimples in the first place. But, hey, at least no wrinkles at age 40 thanks to the chipmunk face, so that's something!

Luckily, vanity is not ruling my life right now. Rather, the drive to live to see my children grow up trumps what I look like, but I would be lying if I said it was easy to watch myself turn into Quasimodo in the span of a few weeks.

The entire right side of my body is largely numb, particularly my hand (luckily I am left handed) which has made for some difficulties in things like fixing the girls hair, tying bows, etc. It is very disconcerting but the doctors seem to think it will resolve as the swelling goes down. I hope so.

I have had some unusual infections, as the the immune compromised seem to get, such as oral thrush (common for babies, not adults), UTIs, sinus infection, eye infections, etc. Nothing too big, but all together one thing after another. Currently all gone, happily, but I have to be very careful with germs and this is rather difficult in our house as you might imagine.

Today I could not get into my big red van to go to church. I had to have two people push me in because my legs have become so weak that I cannot climb up. I have learned to be careful to not end up flat on my back as I end up doing I need help balancing in getting from one place to another and really can only do or go one place in an entire day. It takes all day to prepare to get me out of the house and to that one thing, whatever it might be, so that takes some choosing and planning. I so miss being able to drive myself places and just hop out to get the one thing I need at the store. I have lost my independence completely and that is sometimes the hardest thing of all.

Mentally, I am sometimes clear and sometimes I cannot string three words together. I wish I knew what made the difference from day to day but instead I wait for a good day and then rush to do the things I have been waiting for clarity on. On a bad stay I tend to scare those around me with my non-sensical statements and occasional slurring, although usually I know what I am trying to say, I just can't spit it out. I also get weepy and more than a little compulsive and repetitive on those days. Some days all I can do is sleep and some I cannot sleep at all. It tends to confuse the body.

I always try to do too much immediately when I am feeling well because I am so desperate to be useful to my family and to take the burden off the people who are doing everything for me right now. I am trying to be better about this but I get so excited that I get downright hostile with whoever tries to step between me and whatever I am wanting to attempt to accomplish. Something else to work on. Sigh.

Another difficult part for me is the confusion that my once fairly tightly-run calendar is causing me. I can no longer wake up and know what is going on for my family on a particular day, and it takes me quite some time, if ever, to figure out who needs to be where with who when and with what equipment and snacks. Now, I acknowledge that this is a difficult thing to do for a mother of seven WITHOUT brain issues, but nonetheless it is another sign of my no longer normal life that figures into the equation. I am so very blessed to have my friends who have made this a non issue for me, as people arrive to pick up and drop off and they seem to be getting everywhere they need to be. How wonderful.

Last, but certainly not least for me, is that I am no longer singing at church. As many of you long-time readers of this blog know, cantoring and singing at my church was, outside of my family and friends, my greatest joy. Yesterday the choir resumed singing after summer break and for the first time in 6 years I was not in the choir loft. (I absolutely loved hearing them from the pews and cried happily through my favorite musical parts of the mass, but I couldn't help mourn not participating). I suppose I am like an athlete out for the season...I have new sympathy for those watching from the sidelines. At this point, I am really unable to sing not just because I can't stand up for long or get up the choir loft stairs easily, but even more because my voice isn't working right. The radiation affected my ears, throat and mouth (gums, tongue) and I don't have any breath control (possibly due to the extra weight, not sure). I am going to start singing again every day to try to exercise all of this, as I was so inspired by the choir yesterday, but I was also reminded of how much I miss this part of my life. Hoping for a turn around here.

So, folks, there you have it. A more "realistic" and thorough accounting of my situation. I hope this did not come off as a giant complaint because, believe me, I am truly not complaining. Every day I am here with my family, every day I can get myself out of bed, every day I can show up for SOMETHING is a good day. Yes, I really, really wish I never got cancer. I wish cancer did not exist in this world. But seeing as it does, and I did and I do...I've got my faith and my family and my community and that's all that matters at the end of the day anyway. There's nothing sugar coated about that, I promise.

And, hey, now that you know all the things that are wrong with me, I can now easily let you know as they go away one by one and you will know what I'm talking about!

Wednesday, September 07, 2011

King of Our Castle

Of all the gifts, of all the blessings, of all the joys in this life, none has been greater than my husband.

Man of character, humor, steadfastness, honor and faith, somehow you fell into my lap and I cannot believe how lucky I am. Thank you for your unwavering support, your flexibility and patience with this cancer craziness and all the fussing and changing of routine that it has brought. As difficult as this has been for all of us, it must burden you the most, but you rarely give a hint of this.

You have made me a far better person over the years. You brought me to my faith and for this I am most grateful. But most of all, thank you for being the best dad I could ever have hoped to have for my children. They are the most blessed of all.

Love you.

Monday, September 05, 2011

Fully Retreated

I returned home last night from Northern California where I had the pleasure of attending my annual "silent" retreat. I had planned this, of course, months ago, before my health situation changed so dramatically and I had recently become unsure I would be able to attend. Yet, once again thanks to the help of my friends and family who made sure I would not only get there but would be well taken care of, I was able to go and I am so happy that I did. Thank you, I would be lost without you!

You may wonder why the silent part is in quotes. A truly silent retreat, I believe, is absolutely the best way to stay in contemplative prayer with God and hear what he has to say. However, I have yet to accomplish this practically so I always feel compelled to admit that I do not do a very good job of maintaining silence as I so love to discuss the things I am thinking about and learning...and when your roommates feel similarly it is quite difficult to keep things totally quiet up in the room. Perhaps I will do better with that in the future. And perhaps not.

But either way, I absolutely loved these few days away where I could sit in front of the blessed sacrament, listen to meditations on all kinds of topics, truly consider my future and that of my family, and just read. I was able to thoroughly think through things that concern me and come to peace with them. This retreat was completely different for me than any I have been on over the years simply because my life is so uncertain at the moment and I am processing things much more simply. This made for some powerful connections and moments of clarity that will keep me going for quite some time. (If I can remember them next week, of course...but I DID take notes so I can re-take this retreat every few days if need be!)

One of my favorite parts of this retreat was reading more about Bishop Don Alvaro, successor to St. Josemaria, founder of the Opus Dei. As many of you know, I have been requesting his intercession since my original diagnosis and remain completely hopeful that we can get our needed miracles aligned--his for ultimate canonization and mine for a complete cure and a long life to raise my family and serve my community. (For those of you unfamiliar with saints and canonization, saints become officially recognized, or canonized, by the Church when there becomes proof that they have obtained miracles here on earth for those who have asked them to intercede on their behalf. The day I was diagnosed I received a prayer card for Don Alvaro and have been asking for his help in heaven ever since.) God, of course, is the only one who heals and cures, but having those nearby him join you in asking for help is just like asking our friends here on earth to pray for us. The hope is that Don Alvaro is right there nearby so he can hear him really well.

At any rate, I learned through my reading that while the Rome headquarters of Opus Dei, called Villa Tevere, was being constructed in the 1960s, it was Don Alvaro's job to be sure that the workers got paid every Saturday. This was no small project, and the building forged on and continued on faith even when they had absolutely no idea from where the salary for the day would come from, sometimes even hours before these men were due their wages and their families waited to buy groceries. In the meantime, Don Alvaro struggled with his health, coupled with this great stress of providing from nothing, week after week. But somehow, every single week, he managed to find the money and pay each bricklayer, or to rearrange the debt in a way that could carry him to the following week with no one going hungry. This was never easy and in retrospect cannot even be understood really, but he did it and Villa Tevere was completed. It cheered me greatly to know that Don Alvaro just may be a last minute kind of guy, the kind that works best under pressure, so rather than becoming impatient to feel better NOW, as I am apt to do, I may just have to wait until Saturday to get paid, holding faith that somehow he will come up with that wage. It's hard to explain how much I enjoyed reading about this and applying it to my hopefully pending miracle.

And perhaps when I am healthy, I can go to Villa Tevere myself and visit the tomb of Don Alvaro to thank him. Sounds nice, eh?

Another thing I really enjoyed about this particular retreat was how much more comfortable I felt being there versus the first one or two times I went. The retreat center at Trumbull Manor is a beautiful old Victorian home, three stories with a big veranda and classic shutters. The outstanding food is served, silently as you listen to a tape, family style. You are truly pampered in surrounding and generous care but the first few times you are there, at least for me, I was overly concerned with protocol and spent a lot of time watching those around me for clues as to what I was supposed to be doing. This is naturally distracting to your purpose there and it is so much better to have a grip on how everything works and what is expected.

Many people sign up for a "job" or two as we live family style to keep things running. The first year I went, probably 8 years ago now, I was so nervous. I did not know anyone (so I was actually really silent) and didn't know how to ask about how some of the jobs were done, but I signed up for something I was sure I couldn't screw up: rising slightly early to open the big beautiful plantation shutters on the outside of the veranda and then close them as dusk approached. Well, that didn't work out so well for me. The first morning someone had beat me to it and I was horrified that I had failed to do my job and not sure if I should talk to someone and explain or stay silent. How insecure I was. But that wasn't all. That night, determined to not screw up again, I hovered in the living room until I was sure it was the right time to begin the shutter closing process. I raced outside, went to close the first heavy shutter and to my complete dismay had trouble with the hook and ended up ripping the entire shutter off the side of the house. What to do? TELL someone in my silence or wait for someone to notice? I had no idea and was so completely horrified that I was paralyzed.

As I sat on the veranda yesterday afternoon remembering this now fondly, I realize how much I have grown as a person, in faith, as a mother. I still have tons and tons to work on, but I am so encouraged that as we examine ourselves over time we can see that if we do begin each day anew, with a genuine desire to please God, we will. Miniscule steps, some even backwards, but all ultimately bringing me along to the better person I so want to be.

If you have not been on a retreat before, consider one. If you are too busy to even consider it, then I double insist. Without interior life we cannot become who we are meant to be.