This is Spinal Tap

This weekend was pretty rough, my counts are pretty low so I'm weaker and not feeling too hot. Plus-- I can't go out, and weekend TV sucks. I tried working on my paper but got really frustrated because of what I call "chemo brain"... these days it is hard to focus on something for too long - even reading parts of my books or magazines. To write a senior research paper is infinitely harder while on chemo brain. I had Cassie, Jessica & Ryan visit on Saturday, but didn't feel up to another visit on Sunday. My neck is getting better still but the nausea is hanging around.

This morning was my last spinal tap for a while after five Monday procedures in a row(!). I was really out of it today and I got a pretty intense spinal headache/lower back pain this afternoon. Caffeine helps the spinal pain so Mom got me some coffee. Lauren, Ian & Kelly stopped by this evening once I was feeling a little bit better and visited for a while, which was really nice... felt like the two years living in Flagstaff when we would hang out and make dirty jokes. The four of us would make good characters for a sit-com!

Not too exciting - a good thing!

This week was relatively much better than the two weeks before it. With Physical Therapy and the chiropractor, my neck seems to be getting better. It still bothers me everyday but not to the intensity that it was before. My nausea and loss of appetite were spotty this week, and I threw up after working too hard on Thursday at PT. My counts are really low now so I can't leave the house and I can't eat fresh fruits or veggies... basically I have to be really careful about being around anything that can cause germs. If I get an infection or a fever, we go to the hospital - we avoided this in Induction so let's do that again...

Help a brotha out!

Today I went to PT and got my butt kicked - but broke a sweat and felt good about it. I had a decent day and hopefully I will have a decent week!! The goal is to not get any fevers or infections while my counts are low, which we avoided during the induction phase.

Since I've received many blood products the past couple weeks, I must make a second plea to all of you to donate blood and platelets! I know many of you incredible family & friends of mine have donated once or more since I was diagnosed. Thank you! And many of you have been lifetime donors, which is even cooler! I provided two links for locations, but there are also local blood drives that churches, schools, and community centers host... so look out for those, too!

For everyone in AZ: http://www.unitedbloodservices.org/donatelocations/az.html

And in California: http://www.unitedbloodservices.org/donatelocations/ca.html

There is a federal policy adversely effecting patients in need of blood products that you may or may not know of. Current estimates are that only 5% of the population donate blood on a regular basis. In addition to donating blood yourself to help leukemia and other cancer patients like me, you can contact a few federal agencies that, for decades, have upheld a discriminatory policy of banning openly gay men from donating blood.

The FDA is responsible. It is a branch of the U.S. Department of Health & Human Services, which is a part of the executive cabinet. Please e-mail, write, or call the White House, the Dept of HHS, and/or the FDA and tell them why you think this policy not only blatantly discriminates against a group of people, but also that it isn't helping save lives. Reversing the policy can only make this country a more respectful, caring, and helpful place!!

MORE oodles of fun

6:15 AM check in at clinic
7:00 AM spinal-tap procedure w/ chemo
8:00 AM chemo (IV)
8:15 AM chemo (IV, had to run over 2 hours)
10:15 AM hour of monitoring
12:00 PM begin first unit of blood transfusion
2:15 PM begin second unit of blood transfusion
4:15 PM half hour of monitoring
5:00 PM arrive home

oodles of fun

I had severe back and neck pain last night, almost to the point of not being able to move. This morning those issues were much improved overnight, but I threw up my breakfast after fighting nausea for an hour or so. FUN FUN FUN!

"fluffy"

The past few days my neck and nausea have been better, especially compared to last week.

Went to dinner with Cassie and Jessica, and will hopefully be able to get out this weekend too before my counts get too low... will most likely be house-ridden for the next couple weeks.

I am starting to lose hair on my legs and armpits (weird) - hair is still growing on my head though!

This week

So far this week... my nausea has been OK, not out of control like last week but still a pain. My neck is ridiculous and won't stop causing me outrageous discomfort and pain. I went to the physical therapist today for the first time and will keep going for a month to help - he said it's most likely muscular/skeletal pain, and due to a combination of inactivity and the muscle weakness caused by the chemo/steroids.

Where's all the blood go?

Today's clinic visit went smooth as always. My neck pain has been worse than usual today, and the nausea has yet to sink in after today's chemo - but it's only noon... Tomorrow we have to go back to the clinic to get two blood transfusions because my hemoglobin, like I had thought, had dropped pretty low. This week will be pretty rough again and the nurses told us that this phase (June and July for me) is usually the toughest one for patients, than it will get steadily much better. Thank you jesus. I've got plenty of Buffy the Vampire Slayer DVDs and movies that I've DVR'd to keep me company these two months... since all I want to do while I'm feeling so crappy is lie down!

Day by day

Friday was really rough. I woke up with nausea that quickly became extremely uncomfortable and didn't pass until the afternoon. I went to my doctor's appointment and they said that I already have the strongest anti-nausea meds and that they can't really prescribe any better. So tough there. My neck has still been bugging me a lot, too, and so they are going to set me up with physical therapy - which will be good for all of my joints and muscles, too. My blood counts were lower and will continue to drop while I'm in this phase.

Yesterday I felt decent (because I didn't get a shot on Friday, I think).. I felt great compared to the past two weeks. I worked on some of my paper and went out with Cheyne. We ran a couple errands and saw The Hangover. It was hysterical and should be seen by anyone who appreciates vulgar, absurd comedy like my brother and I.

Today I woke up with a bad neckache and that hasn't gotten too much better. My grandma and I went to see The Taking of Pelham 1-2-3, which I would have enjoyed a lot more had I not started getting nauseated (it's still very good!). I considered having us leave, but didn't, and laid down when I got home and took some meds. I'm getting light-headed when I stand up and my pulse is higer, which may mean my hemoglobin is getting lower. Tomorrow morning we go into the clinic for chemo & spinal tap... and possibly a blood transfusion or two if my hemoglobin is low. I'm getting the same shot of chemo that I got last week this week, Monday through Thursday. Let the fun begin again!!!

The Tunnel

The last four days (two weeks, really) have been an adjective that is the level above crappy - but because this is a family-friendly blog, we'll stick with... crappy. The past four days: I've been nauseated pretty constantly and have had a really low appetite. Certain smells or images can make me more nauseated. My neck hasn't gotten too much better, and I feel weak and fatigued.

The most difficult part for me, though, is having no control over this. Prior to cancer, many of my pains or discomforts were caused by something I could fix. Unfortunately, this is a situation I don't have any power over... the only control I do have is over my attitude. It's not possible in life, but especially when you're being pumped with chemotherapy, to be positive all the time. I'm a trooper and kicked butt in the first month... but I also had a much easier time the first month physically than this week has been. A lot of my troubles the first month - aside from the first week in the hospital - was relatively easy on a physical level. My physical side effects weren't too painful or discomforting (even the blood clot didn't put me in too much physical pain, despite being terrified that my heart was going to explode). The nausea and neck pain of these past two weeks have been the most uncomfortable & painful side effects yet.

It's sometimes hard to feel like getting cancer gives my life purpose that it didn't have before, or that pain has a reason - I find it hard to believe in some divine or higher purpose for human suffering ... Nevertheless, I find this quote from Lance Armstrong interesting... at times frustrating, at times inspiring... but always something to ponder.

Cancer taught me a plan for more purposeful living, and that in turn taught me how to train and to win more purposefully. It taught me that pain has a reason, and that sometimes the experience of losing things–whether health or a car or an old sense of self–has its own value in the scheme of life. Pain and loss are great enhancers. -- Lance Armstrong.

I always keep the light at the end of the tunnel in plain sight, but sometimes it is OK to feel at home inside the tunnel. After all: if there were no pain, disease, violence, or suffering in the world - what would inspire individuals to be optimistic? If 'the negative' did not exist, what would there to be positive about? We wouldn't know how to 'be positive'. Life's not fair or fun all of the time, and these times make us appreciate the good times that much more.

Nausea blows

Last months chemo was rough the first time, and got better throughout the month (except for the blood clot). They released me from the hospital last night, which was a nice surprise. The surgery went well, and I didn't have a reaction to any of the new drugs. But when I got home the nausea started to kick in. I couldn't eat much for dinner. The nausea got worse and I had to take one of the pills that causes drowsiness to help take the edge off - I slept for 12 hours. Last night my chest was sore from the surgery and my neck was in severe pain. This morning I woke up feeling a lot better than last night, and I ate a normal breakfast... but progressively the nausea has gotten worse today. I have had no appetite since breakfast. The pain meds have helped my chest & neck. Life kinda sucks right now - and I hope everything gets better soon.

Round 2

For some reason my head & neck have been feeling better in the late afternoon and evening the past few days (which have been the culprit of my suffering this past week)... So I decided to go out last night with Cassie... BUT only after I finished my final for one of my classes. Now I only have ONE more assignment (albeit a hefty one) for ONE more class to finish my spring semester! We saw Terminator, which wasn't as good as I was hoping for but still was entertaining. I did start to get a headache during the movie, but it wasn't as bad as the headaches of earlier this week.

Today I did the same thing, seeing Angels & Demons with my Nana later this afternoon. Just for the record, I thought it was much better than The Da Vinci Code and was a lot better than I was expecting!

Tomorrow my mom and I are checking in at 5:30 AM (ouch) for surgery. I'm getting the port placed in my chest and a spinal tap with chemo (same drug and amount as the past phase). After I'm back in my room I'm getting new chemo drugs - one is a shot in my arm and another IV into the port.

[[The port, in case I haven't mentioned this before, is a small device they place under the skin in my chest that has a tube going directly to my heart. This can be "accessed" to draw blood or give me fluids/drugs/chemo by poking a needle into the device. They put cream or spray on to numb the area before a needle stick, and after it heals will just look like a small bump in my skin. I'll have it for the rest of treatment, including Maintenance, so for about 3 years... it makes it a lot easier to access my blood.]]

Finally, I take another new drug that's a pill before I go to bed. I'll be in the hospital overnight for observation, to make sure I'm hydrated and that I'm not having a reaction to any of the new drugs. I'll be released from the hospital Tuesday after everything goes well tomorrow... and I'll be sure to update this thing as soon as I'm home... or if I get bored in the hospital.

man plans and god laughs

My week "off" any chemo or steroids has been, for the most part, ruined thus far by a neckache that has given me a migraine for the majority of each day this week. The chiropractor and my mom have been working on it all week, but since I'm on blood thinners to prevent clotting a lot of pain drugs and other remedies (acupuncture, heat, or deep tissue massage) are out of the question. I had made a lot of plans this week to have some fun, get out, finish my schoolwork, and visit with family and friends - unfortunately I've had to cancel most of those plans. Hopefully the things we have been trying resolve the neck and head issues and I can have some fun this weekend!

A week "off"

This week has proven that the glorious week off isn't as cracked up as it's supposed to be. I'm finding I have only enough energy to do a little at a time. I got a horrible head and neck ache today and had to cancel most of the day's plans - I'm going to the chiropracter again tomorrow - yesterday's visit helped but obviously not enough. Hopefully I'll have more energy day by day and can do more.

REMISSION!

After another bout of nausea this morning, we received fantastic news - I'm officially in remission!!

Cheyne and I went and saw Wolverine once I was feeling better, and I'm taking Abby to see UP tonight.

The next phase of chemo begins a week from today.