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......