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.