A new day

There are two particularly frustrating scenarios to face when one is writing: the first is when you can think of nothing to say, and the second is when there are so many thoughts in your head that it seems impossible to put them all into some kind of coherent order.

I suppose I should catch people up with what's going on. I had the stem cell transplant yesterday, and it came off without a hitch. Other than having little to no appetite, things are going really well. I am sailing through so far. Of course, there are harder days to come when my counts completely tank. I'm really hoping that they will be able to release me by next Friday, or Monday the 12th at the latest. Still, it feels really far away. I am really really tired of being here.

I wish I had more to tell you, but so far it has been pretty boring. Please keep praying for me and my family. We need it more than I can say.

Day 5, 673,999

Ok, so that tittle isn't exactly accurate, but that's how it feels to me. I am going to stay positive in this blog, but if I were to complain I would say the following things:

1. Low-bacteria hospital food stinks
2. It stinks being woken up every 3 hours for vitals
3. Peeing in a basin isn't as easy as it looks.
4. Hospital beds aren't terribly comfortable.
5. I hate wearing a face mask every time I leave my room.

But I am not going to complain. In fact, I actually am doing really well so far, praise God. It's nice not to feel too bad yet. I know the worst is to come, but at least it isn't here yet. I feel bad for Justin and Beverly who don't have too much to do when they are up at the hospital. When I feel decent, I am pretty self-sufficient. However, I have the feeling that their day is coming soon.

I hope each and every one of you had a blessed Christmas.

I wish

The first chemo has come and gone, and it turns out that I am handling it pretty well. I don't have any nausea and I'm just a little tired from my night. Everyone always says that the hospital is the worst place to get rest, and it turns out that they were right. I got about six hours sleep last night once everything was said and done. Probably the most interesting/funny part was when the tech came in to weigh me. At the time, I was on the laptop and the gentleman asked me if the laptop was heavy. I responded that it weighed 5 lbs or so, and he thought it wouldn't be a big deal, so he pressed the button on the bed to check my weight. I'm not going to tell you how much I weigh, but suffice it to say that the weight he called out was about 60 lbs lower than my accurate weight. I told him that it wasn't correct, and he asked if it was off by those 5 lbs or so. I informed him that it was closer to 60 lbs off, and he wasn't convinced, so he brought in another scale that eventually gave him my real weight.

Everything is just plugging along. I'm waiting for news on various friends and family who are either in the hospital or having surgery, and hopefully we'll know soon how each of them are doing. So, officially I have accomplished day 2 of 21.
19 more to go.

Day -7

According to the hospital folk, this is Day -7 of my stay. The stem cell transplant day is the official Day 1. It's been a very uneventful day mostly, because I didn't start the chemo today. I'm here in the new hospital, the Ronald Reagan Medical Center, which has only been open since August and it's super nice. The room I'm in is very nice, with a reclining chair and a couch which pulls out into a bed. There's lots of storage and all my favorite cable channels. The staff has been very attentive so far, and the low-bacteria menu isn't too bad. The best part is that the room doesn't smell too hospitally.

Tomorrow begins the chemo, as well as lots of pills and other medical stuff. I felt very bad for my mother-in-law because it was so boring today, but I guess that ultimately, it's better when a hospital stay is boring.

In another note, I wanted to ask for prayers for my friend Nell, who is 16 and going in for a brain surgery tomorrow. We're praying that she comes through it with no complications.

Got to go now....time for them to take vitals.
Otherwise, it's all quied

This is it

As I sit here roughly twelve hours before I am admitted to the hospital, I am starting to get a little antsy. It's the same way anyone would feel before embarking on one of life's great journeys, although except for college, most people's great life experiences don't quite involve so many drugs. I am so grateful for this opportunity at a shot at a cancer free life, but it's hard to mentally prepare myself for the adverse side effects that I will experience over the next few months. I promise that I will do my best to keep everyone up to date on the day to day hospital excitement. I will undoubtedly have some stories. In return, all of you can try and have a lovely fun Christmas with your families and friends. I would appreciate everyone continuing to keep me in prayer, as well as my family...especially my Dad. We could use all the prayer we can get right now.

Thankfully, my mother-in-law Beverly is here for the next two weeks, thanks to the sacrifice of Bobby(my father-in-law). He's holding down the fort for a while so that Bev could come and take care of us, and goodness knows we need it. At least this way I know that Justin will eat something decent from time to time. Honestly, it almost feels as if I am turning myself over to be incarcerated. I mean, I am going to be living in a little room which I can't leave, and people I don't know are responsible for my entire life. Hopefully the food will be slightly better than hospital food. For those of you who have my cell number, I will have it with me. In the case that I have bad cell reception, I will probably post my hospital room number.

So, here's to my first (and hopefully last) hospital stay. May it be as brief and yet as successful as possible, with as little hiccups along the way as possible.

See you on the flip side.

Packing for the weirdest vacation ever

Now that the dust of has settled on the news of the stem cell transplant, it's time to get ready for the next 2 months. It's like packing for the weirdest vacation ever, where you only need pajamas and things which don't contain any bacteria. Plus, we have to get the upstairs ready for the stream of caretakers who are going to be staying with us over the following weeks. But everything is being done with great thanksgiving. I keep telling people that this stem cell transplant is my Christmas present, and they typically respond with pity. However, I mean it with sincere joy that I get a transplant for Christmas. It's kind of ironic that it is taking place during this particular season when we celebrate Christ's birth because some people consider the date of their transplant their second birthday. It's the start of their new life.

So although it makes me sad that I won't be with my family and friends for Christmas, in some ways this transplant makes this advent season so memorable and special.

Finally, I feel the need to publicly acknowledge a couple of people. I generally don't do this because if had to list all the people I am thankful for I could go on forever. However, these warrant some special notice. I posted several weeks ago about how we had an exceptionally large co-pay to make for some drugs that I needed. When I wrote about it my purpose was to let people know what was going on, never to solicit financial aid. There were some people who took it upon themselves to try and help us out with our expenses and they sent us money. Although we never asked for it, we were overwhelmed with gratitude for their generosity. I don't want to write their names, because I don't want to upset them...but you know who you are and the thank you notes are in the mail. I just can't tell you what a help it was. It ratchets down the stress on an immensely stressful situation, and we will never be able to thank you enough. (This is not a solicitation for more funds.)

Of course, there have been all of you who have sent a card or a book or a hat, and those who have cooked us a meal and bought us tequila. (For Justin, not me.) Thank you. From the bottom of my heart, thank you. I could never really express to you how much each one means to us.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am to excited to think of a coherent title to this blog. That's because I just got the call from my transplant coordinator. Our prayers have been answered!!! My cytogenetics game back completely normal...no wonky cells! That means the stem cell transplant is back on! We learned in English class that we should diversify our punctuation in a paragraph, but forget it! I'm too excited! Yippee!!

Good Day

This has been a great day today. To begin, they got all of the stem cells they needed from me yesterday, so I didn't have to do any more harvesting today. That meant that they were able to remove both my picc line and the despised groin catheter. They placed my chest catheter, which isn't too bad. It's on the same side as my port was, and the doctor placed it around the old scar, so it reduces the number of scars I will have. It went really well and I didn't have any complications from the anesthesia.

On top of that, I have a friend who was having a hysterectomy today because they thought she had tumors on her ovaries, but after they did the procedure they discovered that the growths weren't malignant. It's the best news. I am so happy, I just can't even tell you. We have been praying so much for her, and this is such an answer to prayer.

It's been a smooth, nice day with good news all around. I still don't know about the stem cell transplant being a go or not, but I am enjoying the good days when they come.

Hope I have more good news to give you soon!

Howdy, Hermaphrodite!

Now, if that title doesn't draw you in, nothing ever will. We'll get to that in a minute. To begin, today like yesterday was a very long day. Justin and I left the house at 5:45 this morning in order to get down to UCLA by 7 am. I had to get there early in order for them to check me out to see if I needed platelets. Justin dropped me off and went to work, whereas I had to go and get blood drawn. Turns out that my platelet level increased overnight to a level where they didn't have give me anything after all. So, I had an hour and a half to kill before my 9:45 appointment. I read/slept in the lobby until it was time, and then I made my way up to the hemaphoresis clinic. (This is where the story gets way more interesting.)

This was the morning for the beginning, and hopefully the end, of my stem cell harvest. It's important to know that in order for them to harvest cells, they either have to be able to get to veins in each arm to draw from, or they have to put in a catheter. Well, of course, they couldn't get a vein in my right arm, and the picc line wasn't an option, so they had to put another catheter in me....in my groin. Yes....I said groin. Now, this is going to get mildly graphic, so you have been warned.

As soon as I made it to the clinic and signed the consent forms, I was then instructed to remove everything from the waist down. It's also important to know that the clinic is set up in a square with a nurses desk in the center, and 5 beds spaced around 2 of the walls. There's nothing like knowing that a thin hospital blanket is all that is separating the goods God gave you from a room full of people. Anyways, the Doctor eventually showed up and inserted the groin catheter. It's inserted into a vein in your groin, in the crease between your thigh and your privates. Once he was done, I had these two giant tubes sticking out of my groin which they hooked up to the stem cell collection machine. The look of the machine is reminiscent of a dialysis machine, but it works in a different way. Because of the tubes and the placement of the catheter, I had to remain sans clothes for the entire 5 hours of stem cell harvesting. It meant that if I had to pee within that time period, it meant bedpan. Now, do you think I managed to hold it for 5 hours? Of course not. So, finally I told the nurse that I had to go and she brought over the bed pan. Now, I've never used one before, so I was unclear on how exactly it worked. She had me lift up my butt with my legs, and she put underneath me a bed pan and told me to go. There I was, in some sort of yoga position, holding myself up on a bedpan, and the physics of the angles of the thing meant pee was going everywhere before hitting the pan. And, of course, the nurse was called away mid-stream, so I spent 3 minutes holding myself precariously over a plastic tub of my own urine, willing it not to spill anywhere and hoping my legs would continue to hold. Fortunately, she returned before anything more catastrophic happened then the loss of the remaining shreds of my dignity. Eventually, that was cleaned up, and the harvest continued.

Finally, after 4 hours I finished my harvest for the day. Since we are not sure if we got all the cells we need yet, they had to leave the groin catheter for the night. The nurse wrapped the tubes in gauze and then wrapped it in that bandage stuff which you get when you give blood. Then, I was allowed to finally put on my pants. However, I then noticed an "interesting" result of this. When I put on my pants, because of how the tube was wrapped and the placement, it appeared that I had a male bulge in my pants. Hence the hermaphrodite comment. And, if you think that i am exaggerating, I will have you know that Justin burst out laughing as soon as he saw it. I think I said earlier that during my bedpan incident I lost the remaining shreds of my dignity. That was incorrect. It was at the point that I noticed my new appendage that I actually lost the remaining shreds of dignity. Therefore, I will not be going out in public until it is removed, which will hopefully be tomorrow.

Tomorrow they will hopefully removing my picc line and my groin catheter and replacing it with a chest catheter. So, hopefully my self esteem will rise again tomorrow. One can only hope. And maybe you got a giggle at my expense...someone really should.

A very merry weekend

Don't you just love the Christmas season? I do, and instead of sitting around the house this weekend worrying and falling into some sort of anxiety fueled fit, I decided to decorate the house and have a small party. Justin and I bought decorations for our "new" Christmas tree which was given to us to our good friends, Shannon and Gabriel. Shannon had warned us that it wasn't a very expensive tree, but Justin's reply was that he didn't care if it looked like the Charlie Brown Christmas tree as long it was free. Luckily it is a lovely tree, and we have the coolest star on top of it. We had some friends come over Saturday night and all played "Would you rather?" which is not a game I would suggest playing with 5 engineers.

Anyways, I've been up since 5:45 because I had to get over to UCLA to get some blood tests done. I managed to make it back in time to stick myself with neupogen at 8, and then make Justin breakfast before he went to work. So, I'm ready for a nap.

I still don't know yet whether the stem cell transplant is a go or not. I will know in the next few days, and as always, I will post when I know. One thing, though, is that I want everyone to know that even if I can't do the stem cell transplant, that doesn't mean that this is the end of the line for me. Far from it, actually. It's just that the transplant would be my best option. I am starting to get the feeling that some people thought that it was all over for me if this doesn't happen, and that's just not the case. That doesn't mean that I won't be severely disappointed if it doesn't happen, but I won't go jumping off a cliff or anything. I just wanted to clear that up.

Waiting, waiting....

Well, we're still waiting to get the bone marrow test results back to see if my cells come back normal. Waiting sucks. That's about the only thing I can say about it. My transplant coordinator seems optimistic, whereas the doctor just sort of shrugged and said, "We'll see." Not the kind of interaction that most engenders confidence. I waiver between confidence and despair, and I suffer all the ups and downs which come from riding the roller coaster. My gut instinct is that these cells are going to come back normal, but my Eeyore side pushes me to brace for the worst. When I know what's what I will post it, but likely if it's not the news I want I will then curl up into a fetal position for a while.

Of course, when I start to feel sorry for myself, I have to be reminded that things could be much worse. I always meet people in waiting rooms, and yesterday in the midst of a 3 hour wait to see the doctor I met a 25 year old woman who has aggressive b-cell lymphoma, as well as a husband and a 2 year old. She's hoping to get a stem cell transplant too. I can't even imagine trying to do this while also being a stay at home mom to a 2 year old. Her name is Sharla if anyone would like to add her to your prayer lists.

The moral of the story is that life isn't fair, but it is beautiful.

/sigh

5 days of injections down....quite a few more to go. I am happy to report though, that both Justin and I have given the injections with no hiccups. Even better, they apparently aren't going to cause me any major bone pain.

So far, everything has gone so well, and so the pessimistic part of me is cringing in my head waiting for the other shoe to drop. But, I think I am going to take advice from one of my aunt's and stop cringing. I am going to expect that things are going to work out. I mean, I feel like I have so much more to do in life than sit on the couch and convalesce. I want to be doing something, not being sick.

In mere minutes, Justin and I will be heading down to UCLA once again to sign all the consent forms for my stem cell transplant. If it is anything like our last couple of trips, we will be there for hours. If everything goes well, I could be having the stem cells harvested as soon as next week. So that is what I am going to hope for.

You'll have to forgive me if my blogs become increasingly tinged with anxiety. It's just that as all of this hurtles closer and closer, with uncertain outcomes and possibilities, I struggle to put off my nervousness. But I am determined to remain positive. I'm sure you can understand.

Handkerchiefs of Hope

Happy belated Thanksgiving everybody!

So much news and so little time. This has been one of those weeks where you find yourself counting down the days until the next week starts. As you know, we found out about the little hitch in the plan with bone marrow on Monday. Then, on Tuesday, we were informed that our co-pay for my neupagin shots was going to be $2,775. No, I did not stutter, and we were informed that we needed to have that payed by Tuesday afternoon to make way for a Wednesday delivery. Then, on Wednesday, we went down to UCLA on the day before Thanksgiving in the worst traffic imaginable and had a four hour visit which included a bone marrow sample. Most blessedly, the bone marrow procedure was the least painful on I've had yet, and although I am hoping that this will be the last time, I at least know that I can do it again if I have to.

My husband, a veritable rock star, gave me three shots today. How amazing is that?

As for me, I am trying to be optimistic that everything else is going to go to plan. If I ever sound negative, it's because I usually try to work out in my brain the worst case scenarios for everything to mentally prepare myself for whatever might come along. But, of course I can't see the future. I am not even sure that I am going to make my dinner reservations tonight. We have a tentative schedule for the next month, and at the moment it seems like that I will be going in the hospital the week before or of Christmas, but that mean that I would be out of the hospital by early January!

I am a roller-coaster of emotions, and I try and stay positive as much as I can. I really appreciate everyone's comments and thoughts and emails. They give me encouragement and remind me why it is that I stumble to my laptop a couple of times a week and type up whatever nonsense my brain has come up with that day. I hope everyone will excuse the scattered nature of this post. With drugs and tiredness and just the normal post-turkey day lull, I am kind of every which way. Hopefully it will be better next time.

Nobody ever expects the spanish inquisition

You got to know something is up when the blog has the above title. We have a small hitch in the stem cell transplant get-a-long, if you will. This includes a quasi-long explanation, so bear with me.

As my regular readers know, I had to give a bone marrow sample a couple of weeks ago, and from that they ran a battery of tests. The tests showed negative for any cancer, and then there were three tests they did to test the molecular structure of the cells. Turns out, high dose chemotherapy can damage the bone marrow, to the point of which they can't do a stem cell transplant. That's because it is the bone marrow that produces the stem cells, and the damaged bone marrow can make stem cells which are chromosomally abnormal. They did three particular tests in relation to that, and they looked at 20 cells in each test. In the first two tests, everything was completely normal. On the third test, there were 17 normal cells and 3 abnormal ones. My two oncologists, one of which is the head of the lymphoma department, felt that there was no need for concern and were ready to proceed. However, upon presenting my three measly wonky cells to the transplant committee it was decided that I should have another bone marrow sample taken just to make sure. So, either tomorrow or Wednesday I am going to go and get my third, yes, third bone marrow sample taken. The good news is that the transplant nurse doesn't think that there is anything to worry about, and that good chances are that I will still get the transplant. Moral of the story: Don't count your chickens until they're hatched. Or, better yet, Don't count your transplant until it's transplanted.

I am exhausted emotionally from my bone marrow/stem cell roller coaster I've been on today. But I think I am struggling even more so with how I reacted in the first place to the news. I realized that I still struggle with my nature to try and figure things out. I was so happy last week, because I had everything figured out. I knew the stem cell transplant was a go, and I thought that this had a pretty good chance of cure, so I was planning at least the next three months out. Then, wham, I am reminded a little harshly that I am not in control of my life. Heck, 3 of my tiny cells have more control right now than I do. It would be so much more comfortable to know all the answers, but I can't and I would be lying to you if I told you that I wasn't afraid. Although it is difficult, I have to give all this over to God and let Him carry it because I sure the heck can't. So, all of my prayer warriors out there, you know what to do. Please pray that this next bone marrow sample looks ok, and that I might still be eligible for the transplant. And please, pray for some peace and comfort for Justin and me.

And now, for the rest of the story....

Thanks to all of you who were willing to put their issues out there. Whew. Doesn't that feel cathartic? And I am way cheaper than a shrink, so my advice is that you should take that $150 you saved on an hour of therapy and go buy yourself something pretty.

On another note, I got the call from the insurance company yesterday letting me know that my stem cell transplant has been approved, so it is officially a go from all sides. This has, of course, made me elated, but after a little bit the elation begins to fade and I begin to realize that I have to really go through with it. There is a great likelihood, although nothing is certain, that this will ensure my long-term survivability but it is an intense thing to do. It involves weeks of injections which will likely cause my bones to ache. Three weeks in the hospital, some of which I might be so sick that they will have to feed me through a tube. Not to mention 2 weeks after that when I have to be watched like a hawk 24/7. It will undoubtedly be the most challenging physical thing I've ever had to go through in my life.

Still, I think I am going to try and hold on to the elation for just a little bit longer. I am going to try and just worry about today. I've got a lot of shopping to do; I have to buy a birthday gift and thanksgiving groceries, and i have to clean my condo in preparation for guests that are coming in for Thanksgiving. Lastly, I have to battle with myself internally to try and decide whether I will submit myself to seeing the new Twilight film, even though I am positive that I will hate it, seeing as I am a literary purist. In other words, I am going to be normal. For a couple of days at least.

Issues

So, I find myself with a free week where I feel decent and I don't have chemo. Although the most ideal situation ever would be to have chemo this week, I can't help but being a little glad that I have a bit of free time whilst I wait for my body to make more platelets. Go platelets.

A small anecdote before I get to the gist of my blog. Yesterday after lunch I went to the Micheal's to pick up some stuff for a project I am doing. On my way out of the store I glanced off to my left, and I saw I woman and a little girl who appeared to be about 9 years old who was wearing a beanie. It caught my attention because it was 80 degrees outside, hot for a winter hat, and on further inspection I noticed that she didn't appear to have any hair. About the time I made this observation, the woman noticed me and quickly leaned over and tapped the little girl on the shoulder. The girl looked up from her Nintendo DS and the woman pointed to me. I should probably mention that I wasn't wearing a hat, as is usual. The girl looked at me so I smiled and waved at her, and she grinned and gave me a shy wave back and I continued on my way to the car. The interaction lasted maybe 30 seconds, but it made my day. I hope that that girl saw me and felt better about herself because there was someone else like her. Maybe she felt less different, less weird. It made me feel fuzzy inside.

Anecdote aside, the last few blogs have been a little intense, so I thought I would lighten the tone just as I this week has turned out to be a free one. When my dad was here a month ago I, perhaps mistakenly, started a conversation with my Dad about issues. My theory was that everybody has issues, even my Dad. Dad took umbrage at the idea he might have issues (although I know most of it was bluster), and so Justin even stepped in to the conversation to assert that, yes, everyone does have issues. So, my dad asked the explosive and completely unanswerable question, "What are my issues?" This question should never be answered lest one desires to dig oneself a very deep hole. I personally believe that one's issues should be explored through personal introspection or with a licensed professional. Perhaps with a spouse if one has very very thick skin.

Anyways, this whole conversation led me to this brilliant idea: what are your issues?
For example, I have many issues. I am a control freak, for one. I am really bad at organization. Sometimes I procrastinate...why do today what you can do tomorrow? I get really frustrated when I lose or when I am bad at something. I apparently have a propensity to grow certain types of cancer.

I have many more issues, but I would like to invite you to leave a comment, telling me one of your issues. Just to prove to my Dad that everyone does have them. Please...I never get to prove him wrong. You've got to help me out here.

Yippee!!

Well, That was fast, wasn't it? So good news and a little "eh" news. Let's start with the "eh" news. I got held over for chemo this week, meaning that I'll have chemo next week instead. It's not really bad news because it is something that we kind of expected. It's not unusual at all for one's blood count's not to jump back up. Down side is that I will be sick for thanksgiving, and I won't get to go to the San Diego Zoo, a trip we had planned to take next Friday.

Good news: The Pet scan was normal! Yea! That means just another step on the way to stem cell transplant. Whew. What a relief that is. In addition my bone marrow scan for any cancer also came back negative, meaning I might never have to give a bone marrow sample ever again.

I'm not out of the woods yet, but thing are going as well as possible so far, and I couldn't be more grateful.

And you thought I was brave...

Here I am on the eve of a crucial week in this process, and for those of you who have labeled me brave, I wish you could see me now. I am a bag of nerves. Waiting for the results of a Pet scan is like waiting for the results of your biggest exam ever.... times 1000. And if you don't pass the exam, it could directly effect your physical life. And it never gets any better, whether you have a couple of good scans under your belt or not. But it is infinitely worse when your last scan indicated that your cancer had come back and the current scan could make or break your chances for a life saving stem cell transplant.

I tend to range in emotions from anxiety to tears to forced calm. I really don't know if I will find out the results on Monday, Tuesday, or Wednesday. I will know something this week. I really really really hope that this goes well. I really need this to go well. Emotionally, spiritually, and physically....but I have to come to terms with the fact that I will have to deal with it either way. And that if this chemo isn't working, they will have to do something else. And there are still options....just it would be better if this was working.

Wow. I bet this raised your anxiety too....especially if you are my Dad. Maybe I should have put a warning at the beginning of the blog for him. Oh well, he can take it. So, until I know something I'll probably say nothing....unless I get an itch to write and then, who knows?

I feel loved

Before I get to the root of my blog today, I want to be honest and admit that I am scared. Next week, I'll learn if my salvage chemo is working and if I am on the road to getting the stem cell transplant. Probably the hardest thing about this process is the waiting because it's hard to stop your mind from running through all the possibilities. I really hope that I have good news to deliver soon, and in the mean time I will be trying to keep my mind elsewhere.

Now...for the rest of the story. You know, one of the few advantages of getting sick (and there are few) is that they are one of the opportunities in life where you really fully experience how much you love and are loved by others. It's just one of those inevitable things about the situation that people feel moved to express how they feel. As for me, I have no doubt that I am so very loved by my family and friends, and it means everything to me.

One group in particular I would like to note is the church. You know, the church (universal)gets a really bad rap these days for various reasons, but there is nothing like the love and support of church family through difficult times. I am lucky to have several church families that think about me and support me. To begin, there is OCPC, which is made up of people who have loved me through thick and thing and supported me practically all my life. Sometimes the faces change, but their love never waivers, and they have always been for me a powerful example of the love of Christ lived out.

In addition, there is St. Stephen Presbyterian church in Chatsworth. For those of you who might be unaware, I worked there for a year as a middle school youth intern, but had leave the position for various reasons. However, during that time I made many friends and grew to love the community there. Now, I have not attended services there for over a year, but still my friends from that body pray for me, email me, and keep in contact. It's an amazing and humbling thing, and I am so grateful for their love too.

It's been almost 9 years since my mother was first diagnosed with her cancer, which in and of itself is hard to believe. It's my belief that around the time she was diagnosed, she was feeling unappreciated....just like many of us often do. She had two teenagers, notoriously ungrateful, as well as a demanding job and chores at home. I think that one of the good things that came out of my mom's illness is that she learned just how much people cared about her.

I have mentioned several times in my blog that we ought to be more grateful, and I say that because I believe that it shouldn't take illness for us to express our love for those we care about. I think it's important to really take the energy to express how we feel before we experience crisis. So....you know what to do.

Peace out.

Go cardiovascular system!

Well, I think everyone will be happy to know that my tests on Monday went relatively well. As far as I know, my heart and lungs appear to be up to the feat of taking on the super chemo. Hopefully my kidneys and liver and blood marrow will turn out to also be resilient enough to take it too. All I have now is to show that my cancer has reduced from the ICE chemo, and everything will be well on track.

I am nervous about finding out the results of the Pet scan. I am very anxious to know if it is working, and I am eager to know that it is. I just really want this treatment to work so that I can live. Living is good.

I want to take a brief moment to preach. I try not to do that, but it is my blog so I'll preach now and then if I want to. One of the lessons I learned from my mother, and that I've learned from this entire experience is that we need to be in tune with our bodies. If something is happening with you that feels weird, don't just write it off. We know when something is off with our body, and it is important not to be in denial. The funny thing, so often we write off symptoms because we don't want to face the possibilities, when the truth is that our outcomes would be far better if we faced our fears. So, if something feels off, go to your doctor. No matter what he or she might tell you, it's much better to know now then to know 6 months later. Trust me.

See, that wasn't so bad, was it?

No hair up there

Sorry it's been so long since the last blog. I am glad that everyone appreciated the bathing humor. Justin pondered after that blog, "Is it possible to reveal too much?" I argue, no, at least not if you don't post pictures.

Anyways, I had a big week last week, and a big week coming up, so I had best get to it. To begin, I feel compelled to post that I love my new microwave that Dad bought me while he was here. J and I had been without one for a year or so since our 15+ year old microwave had busted, and had learned to do without. Did you know that you can heat water in 2 minutes? Genius. Dad insisted on buying the thing for us, claiming that we would want and need it. And, as much as it pains me, Dad was right. There. I posted it on the internet so that he can use it into posterity.

A lot of things happened this week, including me surviving my 2nd round of ICE chemo, my hair falling out and shaving my head, and I survived another bone marrow sample. Let me say this. If any of you can avoid ever having to give a bone marrow sample, I would highly recommend it. I have now had two which officially makes me a bad a**. Forgive the language, but there is no other way to describe it. Let me describe it to you and you can decide whether or not the term is apropos. First, you lay on your stomach, and the doctor finds a nice spot on your pelvis. Then you are prepped and the doctor uses novacaine to numb your skin. After that, he makes a small incision with the scalpel and puts a needle to your bone and tries to novacaine the bone. Once your bone has been "numbed", he does three things. First, he scrapes the bone. Second, the removes a small piece of your bone, and then finally he inserts a needle inside your bone and removes bone marrow. It only takes 2 minutes or so total, but 2 minutes of excruciating pain seem to last a long time. See. I'm a bad a**.

However, to be fair, it was much less shocking the second time around though no less painful. And I am proud of myself that they didn't have to sedate me. Go me.

Also, Justin earned his big boy nursing badge this week. The nurses taught him how to flush my pic line with heparin and to clean and change the bandages. And he finally FINALLY shaved my head, which I've been begging him to do for the entire week. He wanted to wait and see if the hair was really going to fall out. However, when by Friday all the surfaces of our condo were so covered with hair that one would think we had a golden retriever shedding his winter coat, Justin finally conceded. (Forgive the repetition of metaphor from last blog. I usually try for more creativity, but if it ain't broke....)

See how much has been going on? And this week holds in store some interesting stuff too. For my prayer warriors, you should know that I have some big tests this week which will determine if I can have the stem cell transplant. All day Monday I will be being poked and prodded and tested at UCLA, so keep me in your prayers. On Friday there is, perhaps, the biggest one. I will have a PET scan which will tell us if the chemo is working, and we most desperately want it to be working. The results of this week's tests are crucial, so please remember us. I hope to be able to give very good news very soon, and we can rejoice together.

Until then......

I wash myself with a rag on a stick

I think this blog has been too serious lately, so I thought maybe everyone might enjoy some of the humor of the current situation.

So, I knew that having a pic line in as opposed to a port-a-catheter would be an interesting experience, but a brief one. Turns out, after some discussion with the doctors, it will not be such a brief experience. I will be keeping the pic line throughout my current treatment and not getting a port. Now, I'll have to take a picture and post it so that people unfamiliar with it can grasp the full scope of the issue. A pic line goes into the side of my bicep and is threaded through a vein up my arm and down a vein into my chest. Where the line is inserted is covered with gauze and a large piece of clear medical tape. Hanging freely are two tubes, each about 5 inches long into which the nurses connect my iv. The first problem the whole scenario is that you can't really go around with two tubes dangling from your arm, not only for the sake of fashion, but also for the practical reason that if those little buggers get snagged on something and get yanked.....well, since they are attached to a long tube threading my body, it can't be good. Therefore, they are held in place by a tube of fabric known as a sleeve. Also challenging: you can't get it wet. Which brings us to bathing.

So, every time I desire cleanliness, I have to convince Justin to help me saran wrap my arm so that I can take a sponge bath. However, we found that this takes a long time and since I am restricted to my left arm, is problematic. Justin, therefore, had to take over the job. Now, I know that to some of you, especially women, the thought of having one's husband help you bathe is sweet or even romantic. Let me dash those illusions now. Justin is a one-man efficiency machine. I've been trying to think about how to describe the process, and I've come up with this. Have you ever seen a golden retriever being given a bath in one of those large metal dog-washing sinks? Substitute me for the retriever, and that's pretty much what its like. Seriously, I'm pretty sure that he checks me each time for ticks. Now, I don't begrudge him his methodology and indeed I am grateful that he helps me out. Besides, I'd given up any remaining dignity I had long ago.

The other funny bit lately is the quantity of people who have approached Justin and I lately to ask if Justin has someone to talk to. I would say that Justin is doing pretty well right now. He's a little stressed, but who wouldn't be given his situation. I don't think he's about to snap, but then again I don't think anyone would know until he actually snapped. So if he starts mumbling about high powered riffles and bell towers in his sleep, I'll let everyone know...but otherwise I think he's doing ok. Promise.

Head above water

I'm back! To be fair, I've actually felt well enough to write for 3 or 4 days or so, but I've been a slacker. So sue me. To begin, I want to give a heartfelt thanks to Maryann and Jen for sending me books. They get an A+ not only for content, but for speed. How you managed to get books to me that fast, I'll never know. Thank you ladies. You rock.

I am doing well, but the chemo was pretty tough. I was completely wiped on Thursday and Friday as well as mildly crummy on Saturday. Now, however, I have recovered pretty well. The nausea has subsided as well as most of the tiredness I feel, and I even managed to run all of my errands yesterday without incurring a fever. The title of this blog refers more to my emotional state. I won't lie to everyone, this is a struggle. I am struggling emotionally. This is hard. But I take it one day at a time, one piece at a time, and I make it through each day.

One of the purposes of this blog has always been to provide accurate, widespread information to my families and friends so that there is no misinformation. Therefore, I want to restate some facts so that everyone is on the same page.

First, the old facts:

1. I have Hodgkins lymphoma- That's the good kind. Hodgkin's lymphoma is one of the most curable kinds of cancer. Despite this current setback, I have very good odds of beating this and being cured. My odds are somewhere up there in the 80th percentile. That's not bad. If you don't trust me, feel free to go online to the Leukemia and Lymphoma Society and Website and read all about it.
2. So far I have been through 6 months of treatment called ABVD. I have never had any radiation. Note: since I responded really well to the ABVD treatment, I have much better odds of being cured from these treatments. It's not fail proof, but there is reason for optimism.

New Facts:

1. I am currently going through a chemotherapy regime called ICE, which I will take every two weeks, approximately 3-4 cycles. The purpose of this chemo is to shrink the cancer.
2. If the chemo I am on currently does it's job, I will go through a barrage of tests to make sure that I am up to having a bone marrow/stem cell transplant.
3. Assuming I am green lighted for the stem cell transplant, two weeks or so after my last ICE treatment, I will have my stem cells harvested at UCLA, an outpatient process which takes anywhere from 2-7 days.
4. Once they have enough stem cells, they will put me in the hospital at UCLA and give me really high dose chemotherapy which will knock my immune system down to nothing, and then they will give me back my own stem cells to help me recover. I will be in the hospital for approximately three weeks. The first 5 days are for chemo, and the next 10+ days will be for recovery of my immune system. If everything goes to plan, this could take place as early as December.

Whew. A lot of information, I know. You may have gleaned this on your own, but in case you didn't, this is going to be a very rough couple of months for Justin and I. Brutal might even be a more accurate description. We need your support, and we will be asking for it in different ways.

Please pray for us. Pray that I am delivered from this disease. Pray for the doctors and nurses and the insurance people. Pray that I respond to this ICE treatment. Pray that I am strong enough to receive the transplant. And give thanks for your life and for the blessing of your own health. You never know what's going to happen tomorrow.

I love all of you.

Sleeping

Just to let everyone know...I am totally wiped. I will probably be sleeping for the next several days, so don't worry if you don't hear from me. I'll write again when I emerge from chemo stupor.

Holy urinal cakes, Batman!

I'm done with my first cycle! Yea! And, so far, I'm not too worse for the wear. WARNING: The rest of this paragraph will contain mildly graphic material and, therefore, if you do not wish to hear more about my urinary tract, I would definitely skip forward to the next paragraph. To continue, the only really annoying part so far has been a mild urinary irritation which made me feel as if I had to pee constantly and caused some pain. Luckily, turns out it is neither infection nor irritated bladder, just a mild irritation that goes away with plenty of hydration. Translation: mild discomfort and a regular date with the toilet. And peeing in a cup multiple times.

Welcome back to those of you who skipped the rest of the first paragraph. I am lifting our request for no phone calls. Reality has settled in and our routine has sort of been figured out. I want to thank everyone for respecting us in that request. It was so helpful. Also, I have had requests from some to know what they might do to be of help, and Justin and I have thought of something. I could use some more books, so if you would like to suggest some reading to me or even send me a book, that would be awesome. I think that will be all for now, because I need some rest.

Pump it up

Just in case you were wondering, I survived my first day back on chemo. There's so much to update you on. I got my pic line put in, which was a little weird but ultimately very easy especially since they found a perfect large vein to put it in. Then I went over to the cancer center and they hooked me up to the anti-nausea drugs. After about 10 minutes of the anti-nausea drugs I noticed that whenever I looked up from my book, my eyesight was very fuzzy. I thought to myself, man, I really need to eat something. My blood sugar must be crazy low because I hadn't eaten anything for 15 hours or so. So right about the time I had opened an begun eating my granola bar to raise up my blood sugar, the nurse came by and asked how I was doing with the drugs. I told her I was fine, and she said, "Oh good, because sometimes this Zofran can caused blurry vision." To which I responded, "Oh, well, I do have that." It was very weird until it disappeared.


The other interesting part of my day results from my not computing when the nurses told me that one of my drugs would be a pump, that meant that it would be coming home with me. A pump is for a drug that has to be pumped into your body very slowly. Some people can have them for a week, but for me it is only 24 hours. So, if you can imagine, I have 2 tubes hanging out of my arm, one of which is connected by a long tube to a big bag of drugs and a little machine which slowly pumps it into me over the 24 hours. I have a square little bag, say 1'X 6"X 3" in which the bag of drugs goes, and I can't disconnect from it. They were with me when I tried to change clothes, when I went to dinner tonight, and when I went to bed. It's like a purse you can't put down and not even a cute one.

Anyways, I feel a little tired, but the nausea seems to be taken care of by the drugs, just like last time. I'll even be driving myself to this next session.
There's one more small thing I would like to address. I've had several people tell me how brave I am, and I want to assure people that I am not very brave at all. In fact, I'm just doing what I have to do and I am choosing to have a good attitude about it. I place all responsibility and credit to God, for allowing me to get through this once, and now twice, and keeping both Justin and I from going crazy. I have no magical personal strength, but in Christ who strengthens me. I just think its important to give the credit where credit is due.
Do not worry about anything, but in everything, in prayer and supplication,with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding will guard your hearts and your minds in Christ Jesus. Phillipians 4:6-7

Pic line, port, and ICE, oh my!

Ok. So I am definitely starting chemo on Monday. I need to get a port-a-catheter put back in, because we took it out not expecting the cancer to come back. However, the doctor who is going to put it in is out of town for two weeks, so until then they are going to insert a pic line. For those of you unfamiliar with that, they will basically insert a line into my arm and it will go up through my arm and down an artery in my chest. Because of the type of chemo, they can't just stick it into my arm with a regular iv. The advantage of doing this is that I can start chemo on monday. Yea. Bad news is that I will be forced to take sponge baths until they take it out. Sigh.


Thank you, everyone, for appreciating the no calling request for this week. Justin and I really appreciate it, mostly because the situation in and of itself is draining and it makes it even harder to have to rehash the facts over and over again.

This treatment is going to be difficult, but despite this relapse I have very good odds. The odds are probably better than good, especially since I reacted very well to the first round of chemotherapy. This is not the time for despair, but the time to pray for strength, courage, and healing.

I probably won't write again until Monday, mostly because I don't want to dwell on it this weekend. I plan to play some video games, play some tennis, and enjoy myself before next week. I hope all of you enjoy your weekends too.

Same song, Second verse

To begin, I apologize for the need to disseminate information in this somewhat impersonal way, but it is difficult to have to give the facts over and over again. So instead, I will lay everything out here, and that way I only have to say it once.

My doctor called me Tuesday to inform me that my latest pet scan indicated that the cancer was back. I have two lymph nodes in my chest, and possibly another in my back. They are a little uncertain about my back. This means that we start the treatment process again.

I will be getting a port put in again. I am going to be starting chemo again next week, a new regime called ICE. It will be a chemo I will take over three days every 2-3 weeks for 4 cycles. Then, after I finish that cycle, in January they will be harvesting my stem cells. After they have harvested my stem cells, they will put me in the hospital at UCLA and hit me with the hardest chemo possible and then give me back my stem cells to help me recover. Once that is finished and I recover from it they might do radiation.

That's a lot isn't it? Now I know this is shocking and unsettling, but it is what it is. Some of you might be thinking, what can I do to help?

1. Please don't call just yet: I know you might want to call, but Justin and I are still trying to process and feel a little bit normal for at least until the chemo starts again. If you want to call next week, that would be fine, but we're just not in the mood to rehash at the moment.
2. Prayer: Pray for us. Feel free to put us on any prayer lists you have and to remember us. That is very helpful.
3. Be Thankful: Look around your life and appreciate all that you have. Give thanks for your health and your family and all the gifts you've been given in life.


I appreciate that you care enough to read my blog, and I will continue to keep it up to date so that our family and friends know what is going on. Again, I'm sorry to inform everyone in this way, but it's the best I can do.

They like me, they really like me!

Sally Fields moment there. (For you youngbies, ask an older person and they'll explain the reference moment to you) Anyways, I have been getting bugged for a new blog. And, to be fair, I have been quite pathetic when it comes to keeping up. There have both been many things and yet very little going. How can that be, you ask? Well, let's see...I went to Colorado with Justin. I didn't end up skiing, but I did shoot a gun for the first time and I also went on a tour of the Coors Brewery. That was interesting .... and all in all it was a very all-American weekend. An aside, I was amazed at the violence of the gun up close, and found I was terrified by it. I was also surprised by the yummy-ness of fresh Coors beer.

But, without a job, life can be kind of boring. I realize that my job right now is to get well, but it can be a little boring. I am excited about the prospect of being cancer-free. There has been one super major frustration of this whole thing, and I'll bet that you won't be able to guess what it is. I must back up and add a little context to this picture. You see, most people struggle physically in many ways on chemo. They suffer from fatigue, loss of appetite, hair loss, etc.... This physical debilitation often caused from the treatment often causes them to lose weight.

What you need to know about me and my experience with treatment has been rather different than many people. Probably due to my age and type of cancer, I have borne the treatment very well. My appetite has been fine (surprise, surprise), and if I let myself sleep for three days, by the fourth I am starting to feel quite well. Indeed, I have going to the gym most other days. So, my problem hasn't been weight loss, but weight gain! I'm grateful that I am doing so well, but jiminey crickets, do I have to get fatter? I can hear the doctor as he goes from patient to patient. I'll hear him tell one patient or the other that to try and gain a lbs or two in the following weeks. Notably, he has never proffered me such medical advice. So since my appetite has survived and my activity plummeted, I put on weight. So it's counting calories and exercise for me. Yippee. Life can be terribly unfair, can't it. Cancer and dieting? Cruel. But, I lost 4 lbs this past week, so I suppose it will all bear out.

To add to my feeling somewhat unattractive, I have some hair, but not all. I would estimate that I lost 25% of my hair. It's thin, but there. So, this leads to more and more staring. You see, people can't seem to decide "what's the deal?" with me. So they feel license to stare, and more recently since the hair I have has grown longer, I have had people openly snicker after looking at me. It hurts a little, but not too much. On an interesting note, I discovered something bizarre about my hair. That which has not fallen out is striped. Like the rings of a tree, each strand goes from thick to thin from the chemo. Intriguing.

Well, that's enough for the moment, but I won't be so long away next time. Promise

WOOT!

I hope that my delay in blogging didn't worry anyone, but we got my pet scan results back. And the result was, in the doctor's words not mine, excellent. Woot! But, let me back you up and tell you the whole story.

So, in the week between taking the scan and finding out the results, my emotions were subject to roller coaster ups and downs. When I was being rational, which is hard to do for a normal person under the circumstances much less someone prone to irrationality like myself, I could look at the objective facts and be hopeful. I knew that my back has almost been completely pain free, whereas before I started out being up in almost constant pain. I knew that where my neck once had a lump which was visible to the naked eye and even more noticeable to the touch, I could feel absolutely nothing but muscle.
Yet my irrational side kept saying, but what if? This pessimism has some grounding in my history. Waiting for scans when my mom was sick was agonizing. Sometimes we got good news, and sometimes bad, and I taught myself to prepare for the worst. I forced myself to consider all the possibilities, so at least when I got the bad news I would be prepared....I would be ready. Although, you are never really ready to hear bad news. It can be scary to hope, because it is a horrible feeling when you hope for and expect the best, and you don't get good news.

So I didn't want to get my hopes up for these results, but Justin kept trying to convince me that based on all the evidence, the results would be good. I had a minor meltdown Sunday night, but Justin talked me through it. Then, I got positive, and I was doing great all the way to the doctor's office on Wednesday. When we got in the waiting room, the anxiety began to surge. I overheard the nurses trying to decide where to put me and I realized that they were putting me in a consultation room. I figured that if all was good, they would simply take me back to my chemo chair and the doctor would talk to me there. I thought that surely putting me in a private room, which hasn't been done since my first consultation, meant that they were breaking bad news to me. So when they took me back to take my blood pressure my heart was racing with fear.(notable fact: my blood pressure was 25 points lower this morning than it was yesterday morning) By the time Justin and I were in the consultation room I was in tears. We waited for 15 minutes or so, me anxiously pacing and tearing up and worrying and Justin calmly flipping through 3 months worth of skiing magazines (notably he wasn't as disturbed by the scenario as I). Finally, Dr. Black came in the room and took one look at me and asked, "Why do you look so terrified?" I told him that I was afraid that the test results were bad because they had put me in a room to talk with him. He told me that the test results were really good, and the nurses had put me back in the room because there weren't any chairs available at the moment. I believe that Justin gave me an "I told you so" look. Then I explained, perhaps moderately irrationally, that putting me back in the room was tantamount to psychological warfare. He said, "You know, I never thought about it that way, but I can see how them putting you back here could make you nervous. Good thing I didn't send in the grief counselor." Fantastic. An oncologist with a sense of humor.

The results were as follows: everything from my around my collar bone is gone; my spleen is clean; there's just a little bit left in my back and in my chest, but they are both greatly diminished. Hopes are that when he tests me after the next 2 rounds that everything will be gone. I will finish up in total 4 more rounds of chemotherapy either way and then we will discuss if he thinks we should do radiation.

But the treatment is working. I have every real hope of being cured as much as one can be cured from cancer. I feel like I know have the chance to think about my future seriously again. I feel as if I can begin to see the light at the end of the tunnel, and I am hopeful. I am also a little sick at the moment from the treatment yesterday, but a little discomfort is worth getting well.

I feel it is important to mention this before I go. This past weekend, a dear man who was a friend of mine passed away after a battle with cancer. Len Roberts was one of kindest, most loving people I've ever met. He had a heart bigger that the state of Texas and a spirit as strong as his southern accent. I got to know him well when I was on the pastor nominating committee as we all sought the next pastor of Oak Cliff Presbyterian Church. His resoluteness to seek the will of God in calling a pastor, his determination to do the right thing and his willingness to work tirelessly easily earned my respect, but his character and loving nature earned my love and affection. My heart goes out to his family and loved ones. He will be greatly missed.

Look at me! I glow!

Ok,ok. I really don't glow, but that would be an awesome side affect of being made radioactive. Yesterday I was subjected to my second pet scan, and to do the scan they both inject you and have you drink radioactive sugar. Yum. You know, the fun thing about all of my appointments and scans and things is that I tend to be the about 20-30 years younger than every other patient I see. They keep telling me that there are lots of young patients they have....I just never see them. I suppose that deep down, I am glad that I don't see lots of people my age in these places, because it sucks to be 26 and sick. I don't mean to complain...but I want to be honest.

I made the mistake and called to ask a question of the nurses at my oncology office. I've had a little bit of drainage for the past week or two. Its probably just allergies, but there's some green stuff in my snot. Then today, I had 1 cough that brought up the slightest bit of green stuff. Well, just as a precaution, I thought I would call the nurse and asked if she would suggest anything for me to do. When I called, I was very clear that I felt fine and that I wasn't running a fever, and that it was just a little green....and MAN they hopped into action. They immediately got the number of my pharmacy, paged the doctor, and arranged for me to be on antibiotics. The same antibiotics that I was supposed to take if I got a fever over 101.5. I kept asking the nurse, "Are you sure? Seriously?" But, the doctor was clear. So, I am on the antibiotic. I'm glad that I didn't mention that I have had green snot for about 2 weeks. They might have sent over a rescue mission.

So, here I am on these antibiotics. It is a funny thing, being on lots and lots of drugs. You start to begin to read labels a little more carefully, you know, to prevent bad combinations of drugs and whatnot. Trust me, one must be an advocate for oneself. And when I read the information of this drug, it lists the following side effects: Belly pain, nausea or vomiting. Small frequent meals, frequent mouth care, sucking hard, sugar free candy, or chewing sugar-free gum may help. Diarrehea.

Yea! Oh yeah, it also says that on rare occasions it can cause you to be dizzy, or for your tendons to rupture. Sigh. And I begin to wonder if the snot was really all that bad. I know, I know....you are thinking that the doctor knows best. He does.

Moving steadily along, I think it is crucial to mention that as I am blogging, I am watching BET gospel channel where TD Jakes is preaching. This is not something I do often, but it happened to catch my attention. As he preaches, his band emphasizes certain points in his sermon with instrumentation. A tambourine in one instant, chords on the organ in another. Now, my favorite preaching professor would be aghast, but I kind of like this style. I'm not sure that it would go over so well in a presbyterian church. Entertaining you must admit. It makes me wonder when I will be up in a pulpit again. It's funny, in a way. In October, I was preaching for members of my committee in front of my home church, and being a part of the women's great banquet meeting. I was in the midst of my chaplaincy internship at UCLA. And now, I am sitting alone on a Friday afternoon, praying against side effects, anticipating the results of a pet scan, watching TD Jakes preaching a sermon titled "Nothing Just Happens." Part of me totally believes and part of me wants to believe this is true, if that makes any sense. The problem is that it usually takes time and perspective to really understand why things happen. I can believe that things happen for a reason without being able to see it in my own situation. I would like to think it is some maturity on my part that I am able to know this. But my immaturity comes in that I would really like to know now. I would really like to have the 20/20 hindsight to know why this is happening to me, and what the purpose in it all is, so that I could bear up under the weight of my struggles better.

Enough of that. Please keep me in your prayers; pray that I might have good test results. Pray that my cancer will be taken away. Thank you.

A musing

I was at target today, shopping while Justin was attempting to get an eye exam. (That attempt failed, but that's a story for another day) I solidified a theory that I had been developing over the past couple of weeks. You see, I spend much of my time as the inmate...I mean, occupant of our condo. At first I chalked that up to my desire to convalesce and get better, and although that is part of the truth, it isn't the complete truth. When I go out, say to Target like today, people stare at me. Granted, I don't generally wear a hat or a scarf because its hot, so I definitely look odd. The thing is, it isn't particularly that I find the staring rude or offensive. To be perfectly honest, being bald makes people nicer with many people giving me smiles, nods, or a greeting. The problem with going out and the stares I receive is that it reminds me that I am different. It reminds me that my life is out of whack right now.

The same thing often happens when I talk or hang out with friends who are relatively in the same stage of life. Their lives aren't on hold like mine is, and I don't like to think about it. In fact, on Friday I go to take my last test in the series of tests that I take for my ordination. Imagine, I'll be sitting in a classroom with a bunch of other students, all of whom are bright eyed and bushy tailed with large lattes in hand, and there I will be. Bald, one day after treatment and right after getting a shot which can cause me bone pain, trying to take a test. Seems like I'm at a slight disadvantage, no? But this test is only offered once a year, so I have to take it.

On top of that, tomorrow I go for chemo. It feels like I've been doing this forever, but this is only my fourth treatment. I have to do this 8 more times after this and the thought makes me.....something. Not thrilled, that's for sure. A week or so after my treatment, I start to feel pretty good. I feel normal, healthy, ready to do stuff. Then, 5 days after I start to feel good I have to go and have poison pumped into me. I've only been at this for 2 months, and I have no idea how my mother did this for almost 3 years. Actually I know exactly how she did it. We do what we can to live.

Funny, though. I'm not depressed. I don't really feel too sorry for myself. I'm lucky. I have an illness which will most likely get cured. I have an amazing husband, and a great supportive family. I have friends and a church. I have hope that I am simply on hiatus, not down for the count. And besides, how awesome will I be when I rock that test with cancer? Seriously, I should get bonus points or something. Maybe I can ask my liaison about that.

Recovering

So, its 5 days out of the last chemo, and it definitely knocked me out. I slept so much on Saturday and Sunday. It sucks. I get chemo on a Thursday and it knocks me out pretty well until about Tuesday. Then, by the time I am feeling pretty decent, I have to lay low because of my counts. So, I get about 5 days every two weeks where I am both feeling up to and am allowed to do whatever I want. I can't believe I have to do this nine more times. I waffle between being incredibly grateful that there is a treatment and that I am doing so well with it, but I am resentful that I have over four more months of this. I feel so horrible that I am so ungrateful. The emotional part of dealing with cancer is as difficult at times as dealing with the side effects. Anyways, I'll probably be lying low for a while. I'll let you know if anything fun happens.

Is sleep blogging worse than drunk blogging?

They say that driving tired can be more dangerous than driving drunk, albeit both are are horrible. This leads me to the hypothesis that sleepy blogging is possibly more crazy than drunk blogging. To be fair, since I can't drink right now, this must remain an untested hypothesis; but I think that we can all agree that based on the last blog that sleepy/insomniac blogging is dangerous. Sigh.

I appreciate that my aunt Maria understood how a extrovert can be shy and retiring at times. Much empathy props, tia.

As my husband pointed out to me this afternoon, my last blog rambled a bit. But it was honest; probably more so than I would generally want to be on the internet, so I guess in a way it is good. Forgive me, friends, if I divulged too much.

I think that I did too much today. Especially when you consider that I only got 4-5 hours sleep last night. I got up, fixed Justin breakfast, and took him to work. Then, I came home, showered, answered my face book messages, and went to get my shot. Since after the first chemo my white blood cells didn't respond as well as we wanted, from now on I have to get a shot the day after each treatment. Luckily, I have enough arm fat that it doesn't hurt too bad. Can you believe it? I am actually grateful for arm fat. After I got my shot, I went to Pasadena and picked up a prescription and a bathing suit. Again, more evidence that I definitely did not get enough sleep last night. Poor judgment. I picked up my friend Marcus for lunch, and went to visit my friend Jess at the salon. I got my head buzzed, went shopping at crate and barrel, got ice cream at 21 flavors (my favorite!!!), picked up Marcus again, and brought him to Simi. Then I made dinner and collapsed. Whew. I'm exhausted. So, its fair to say that I possibly did too much. And now I'm very very sleepy......wait.......and.....I'm blogging. Crap. Apparently I didn't learn from my past mistakes. As my dear pappy likes to say, you can buy 'em books and send them to school..... Better stop now. I think I am moving into my cat phase of treatment, when my schedule reverses itself. Instead of sleeping 8 hours and being awake for 16 hours in the day, I sleep for 16 hours and am awake for about 8. Yea! Ok. Seriously. Time to stop now.

This is why insomnia is bad

I just signed up for facebook, and actually invited people I haven't talked to in YEARS to be my friends. I have resisted doing this for YEARS. I have avoided people I used to know for YEARS. I discovered in therapy that I tended to do this because of a stress/anxiety overload. Of course, when you lose two grandparents and a mother in three years, graduate from college, move 1500 miles away from home, go through a traumatic breakup of a church, etc....etc...all over a period of a couple of years, it can apparently cause one to hide out. So, that's what I did. After I left college, and even more so after I moved to California to go to Fuller, I slowly pushed people out of my life and sealed up the door. I didn't want anyone to know where I was or what I was doing. I wanted to disappear. I had my handsome husband inside the walls, and for a while his company alone was OK. Don't get me wrong....I went to class and talked to people and stuff....but I made no effort to make any friends beyond a basic acquaintance. But no man (nor woman) is an island, and eventually I got lonely. Considering that I easily test an ENTP(F) on a Meyers-Briggs test, one can understand why I eventually was forced to seek society. So, with some grief therapy, I eventually got better about hiding away. I still am not the best at returning phone calls nor emails....but I try much harder. It's hard to try and explain to my old friends why I ignored them for so long. Its hard to explain that I just couldn't handle friends. I was expending so much emotional energy with my grief, school, work, and husband, that I just couldn't handle authentic relationship with anyone else. So I didn't. I know it was horrible and not what a friend should do. It really hurts me to know that I hurt some of my friends when I shut them down, and I hope they forgive me for it. I don't make excuses for it, but I was surviving.

And now, of course I have cancer. One thing about cancer...its really hard to go it alone. I actually really don't want to. It makes you want to connect, both with people you love and people you used to be close to. But a burnt bridge is hard to rebuild. Especially from one end alone.

Enough. Enough musing and writing....its about as dangerous as signing up for facebook.

This is why insomnia is bad. This is why joining facebook is bad. This is why contacting people who probably couldn't care less about you is bad bad bad.

But what the heck. Supposedly big risks can result in big payoffs. Geez....being emotionally open on the internet....I'm Presbyterian for goodness sake. I must really be sick.

Is it a sign that we go to OZ?

Justin and I have been talking, and we figure that since we are currently living on the West Coast, it makes sense that the next big trip we take should probably be westward as opposed to eastward. And I just found out that a cousin of mine is about to move to Australia. Plus, our friends Aaron and Fabi are living currently in Melbourne. Is it a sign? Is the land of OZ calling to us? It very well may be. I always have wanted to go there anyways. I went out on a couple of dates with an Australian once. He was nice and very funny. In fact, all the Australians I have ever met have been pretty darn nice, which seems to bode well for a visit. My favorite part of my date with him was when I asked him if Foster's was truly Australian for beer. Apparently, no. According to him, Foster's is Australian for piss. Hmmmm.... He was very adamant about it too. Oh well. Have to think about it, won't I?

It's a go

First of all, I want to wish my Aunt Janet and my cousin Christopher a very Happy Birthday! Chris is a navy medic who is currently in Iraq, so I'm guessing its not his best birthday ever...but luckily he's coming home soon, and I know we are all looking forward to it, especially his mom, dad, sister and girlfriend.

I got chemo today! That's exciting because it means my counts are good. In addition, I had enough energy to play an hour of raquetball with my husband and his buddies.

I have one complaint. I thought one was supposed to lose weight when one was on cancer. Yeah. I gained 3 lbs these past 2 weeks. Of course, it is that time of the month, but come on. Oh well...I guess if I don't have the rest of the side effects, I shouldn't be bitter about not losing weight. Sigh. Guess I'll have to keep working at it the old fashioned way.

Seriously though, I am really focused on including lots of fruits and vegetables into our diet. We are really lucky living here in California because we get the best produce here. And I honestly love cooking for my husband, and he's a good eater.
Life is relatively good....and I am so grateful

I hate cleaning

Some of you know me better than others, so I think before continuing with this blog I ought to disclose some things about myself. I am neither a very good organizer, nor and extremely tidy person. I have many talents, but organization is not one of them. Yet, since I am here in the house so much it would be absolutely absurd if I didn't keep it moderately clean. So, with great effort, I have been working on cleaning and organizing the condo. I spent most of Monday working on the kitchen. Did you know, its way easier if you do dishes every day as opposed to every week? Now, I am working on my closet. Part of the problem is that I wait so long to clean or organize that by the time I get around to it the problem is so massive that I get overwhelmed and I quit. Actually, that's the story of my life. I have a tendency to put off and procrastinate on things until the problem is gigantic. I do this with school, cleaning, mail, answering the phone......the list goes on and on. Part of my growth in the past year has been learning to face things headlong. It really isn't easier to bury ones head in the sand. Luckily, I didn't do this with the lump I found. Thank goodness.

It's interesting what you learn about yourself when you are left to your own devices. It seems that it is much more difficult to manage ones time when they have nothing to do than when they have tons of stuff to do. However, I am starting to get the hang of things. I find that if I let myself sleep as much as I need, I am much more industrious in my waking hours. Hopefully the next time I blog, I'll have a clean, organized living room and closet.

Tomorrow is a new chemo. I am praying that my counts are high enough tomorrow to take treatment, and that I react well to the treatment. I am remaining optimistic. Is there any other way to be? Hope to have good news for you tomorrow!

Did you miss me?

Well, I guess it is unlikely that anyone is still reading my blog given that I haven't written in three weeks. Lots of stuff has happened, so I will try and catch everyone up with the latest details.

I suppose part of the reason I haven't written lately is because I've been in Dallas with my family. But mostly it was because I was kind of depressed. Three weeks ago, when I went into my scheduled treatment, I got held from taking the chemo because my counts were too low. This was unexpected, but not a disaster. Yet, in full disclosure, it brought up fears which I didn't really want to face. When you start treatment, you sort of take on this go and get 'em kind of attitude. You tell everyone, and they echo back to you, that you are going to beat this thing. So facing setbacks is difficult. The odds are that I will beat this thing, but the truth is that no one knows the future. There is no set outcome, and I have to take things one day at a time. Talking about uncertainty tends to make people uncomfortable, but I think that most patients who are facing serious illness need to talk about it. I think that anyone who faces a disease which could be terminal, has to face all the possible outcomes. That doesn't mean that I'm being negative, but it means that I know its a reality.

Upbeat enough for you? I thought so. Good news is that last Thursday my counts were fine and I was able to take treatment. From now on, every Friday after treatment I will go in and take a shot to stimulate my white blood cells. Unfortunate side effects include bone pain, but its controllable.

My spirits are relatively good. I sleep a lot, almost like a cat. I shaved my head, and if I must say so myself, I have a relatively normal shaped head. And since I have yet to lose my eyebrows and eyelashes, I don't look so bad. Growing up as a chubby child, I often heard the complement, "You have such a pretty face." And now that's finally paying off. Yes! So, enjoy the first bald pic, and please keep reading. No matter what happens, I promise I won't stay away so long from now on.