Conclusion & Resolution

It has been weeks since my last intensive chemotherapy and well over six months since there was a cancer cell in my body. I began Maintenance this past Tuesday, - and even though I am on steroids and chemo still, but in lower and non-intensive doses - I feel good. My hair is growing back, slowly but surely, and I continue to push my body in order to regain strength and endurance. I am on the road to recovery and there is no looking back.

I end this blog, quite appropriately, on the final day of 2009 and the final day of this decade. Over the horizon there is incredible potential as I hold the rest of my youth, and lifetime, ahead of me. I have beat cancer once... at nearly 21 years old, that is more than anyone should ever have to say. Hell - at any age, that is too much to say. There is still a lot of work to be done. I may have survived but the fight to eradicate life-threatening diseases across this world still remains. People are suffering every waking moment for often unimaginable or incomprehensible reasons. It is wrong, and together we can change this. Please continue to make an impact in any way you can: donating blood and platelets, volunteering at health clinics, running in marathons, raising money for cures, lobbying our lawmakers for research funding, etc.

Yes, tomorrow is the start of a new year and a new decade, but there is nothing new that I will wake up with tomorrow... I carry with me - as I have this entire year - the tremendous love of my family, the great support of my friends, the intelligence and skill of my doctors and nurses, and my fighting attitude.

"I thank whatever gods may be / For my unconquerable soul ..."

Así es la vida

Friday I had a count check in the doctor's office. My platelets - even with Tuesday's transfusion - hadn't increased, so the doc wrote for two more units to be transfused. We went upstairs to the clinic to get the transfusions. After the second unit, my throat started closing up and I was wheezing. I also got some hives on my neck and head. The nurses gave me steroids and benadryl for the allergic reaction, and the doctor put me on the oncology floor for observation. I had a fever for an hour or two, but then it came down.

Saturday morning the doc was happy that my reaction hadn't come back overnight. He is concerned with the sores in my mouth and rectal pain I've been having for a couple weeks (Hey - nobody forces you to read this blog). He thinks they should be healing quicker than they have been. So I've been on a bunch of anti-bacterial, anti-viral stuff for two days.

Today my counts were not much improved. But white cells and ANC were up, which is good. I am getting more transfusions - red blood cells today - and more antibiotics. I'm getting a CT scan of my pelvis to make sure nothing is wrong with my booty. And if that's all good, we should be outta here tomorrow... really this time!

Adventures in Chemotherapy

Last Thursday I woke up with a raging headache and was having shortness of breath when I stood up... in addition to the weakness and achey feeling I had all last - and now this - week. We went to the office to get my blood checked and my hemoglobin was low. The doctor admitted me to the hospital for a short stay to get blood transfusions and - just as a precaution - a CT scan to check for clotting.

Needless to say, we didn't leave the hospital Thursday night. I got two units of blood and a unit of platelets, but there was also a blood clot in my left lung. I got my last Ara-C on Friday as well... which gave me severe headaches Friday and Saturday which are only now beginning to taper off. They did more tests on Friday and a repeat CT scan Saturday morning. They think now that the clotting may be coming from the port in my chest... so it looks like I'll be having a procedure done to remove it when I go on Maintenance in a few weeks. The clot was no smaller on Saturday morning but blood was still flowing past it in my lung so they decided against any further treatment since I am already on blood thinning meds (and my platelets were very low). I'll get it checked out again with a CT scan on Monday.

As of this morning, my ANC and white blood cells were nearly zero which means I will have much difficulty fighting off any infection if I come into contact with one. This also means I continue neutropenic precautions, not eating fresh fruits and vegetables, until it gets much higher. It also means I have to wear a mask when I go to the hospital or doctor, and that I can't really have any human contact. My hemoglobin was better, almost normal. My platelets were nearly nothing, and my arms and stomach are getting all bruised from my Lovenox shots. I got another platelet transfusion this morning before chemo.

Yesterday I went and had a doppler study done of the veins in my arms, legs, and neck to check for any other clotting - there was none. This morning I had a doctor's appointment for a count check. After that we went to the outpatient clinic for the platelet transfusion and two IV chemos.

Good news is... I have now completed Cytoxin, Ara-C, and PEG - all of which are nasty evil chemo drugs. Never again will my body be tortured with them again. I also got vincristine today, which I will get next week... Then I'll be on Maintenance!!! Sores that have not healed for weeks now because of my low counts will finally heal. My counts will begin coming up within the next week and in about two weeks I'll be on the road to recovery and starting to feel good.

Crappy

I feel pretty crappy today! Achey, tired, sore, weak. Some wounds of mine aren't healing because I don't have any good cells to heal them!

But --- on the positive side --- if you're in the Phoenix (Chandler) area this weekend, you should stop by the Elephant Bar restaurant at Chandler Fashion Center this Sunday December 6 between 11 AM and 10 PM. My dad has coordinated a fundraiser to help raise money for the Leukemia and Lymphoma Society's team in training. This is the organization that my friend Lydia is training with to run her marathon in January. 20 percent of all sales with the flyer will be donated back directly to the LLS - funding research, education, and patient care. If you're interested, even if vaguely, please e-mail me at jacob.harvey@yahoo.com and I will send you a flyer - in order to benefit Team in Training's efforts, you must give a particular flyer to your server.

Phase 4 Month 2 Round 2

I went to the doctor's office for a count check today: they've all dropped a lot. Yesterday I was getting short of breath and dizzy when I would get up - today not so much. This is from my hemoglobin getting low. I may need a red blood cell transfusion later this week if it gets worse, I'll definitely get one within the next week because my counts will continue to drop. I'm losing hair again, but some of it is still hanging on. Tomorrow at 6:45 AM we're going for another spinal tap w/ chemo, and then tomorrow through Friday I get the Ara-C shots again... but then I'll be done with them forever!

Thanksgiving

First thing's first - yesterday was Thanksgiving.
I honestly am simply thankful to be alive. I was diagnosed with a life-threatening cancer seven months ago, and as corny as it may sound, I am so thankful for the small things in life, just to wake up and be alive. My experiences with leukemia throughout 2009 have taught me many things, but I think the most powerful thing I will take away from this experience is that.

I got the four shots of Ara-C this week, and all the other stuff on Tuesday. My expectations were for me to feel crappy, and even though I have, it hasn't been as bad as I thought it was going to be. Is my body finally just used to this nasty toxic stuff floating around now? I hope not... it's just not natural. Nevertheless, I've conquered one week. One more to go next week.













I wrote this down today. Much of this has been part of my life mantra for a while now. Other parts have been definitively shaped by leukemia.

Seek out beauty everyday.

Don't take anybody's sh*t.
Speak your mind.
Fight for what you believe in.
Reject negativity.
Make your dreams come true.
Embrace those you love.
Be thankful for life, for it is a gift.

The Big Day

Tomorrow morning I'm going in the clinic for a spinal tap with chemo. I'll also be getting 5 hours of hydration with Cytoxin (chemo, third and final dose) and the first of my Ara-C shots of the week. I'll get a chemo shot Wed-Fri as well, and then Tues-Fri next week. I'll also be starting 6TG, a nightly chemo pill, that lasts for two weeks. FUN FUN FUN!

WEAK

Well I'm still recovering from my fun with the steroids... my muscles (if you can even call them that at this point) are incredibly weak. A 15-minute walk today in the neighborhood took the wind out of me, and walking down into the greenbelt felt more like hiking down into a mountain. The shift of body fat all to my middle has me feeling a little off-balance. I still had insomnia last night and woke up with the sweats. Hopefully this nastiness will leave my system soon and my body can start fighting back!

One day and week at a time

Well this week on chemo and steroids has been slightly less horrific than two weeks ago. In fact, it has been much better: no halter monitors, no skipping heart beats, no constipation. My mood has been stable so far (we've got until Tuesday people, though) and since yesterday I have had plenty of energy to work on my school work. I had the usual exhaustion, fatigue, body and head aches, and general not-feeling-well, but I keep reminding myself that the end - the end to all of this high-dose, highly-toxic CRAP - will be over in just a matter of weeks now. And so I think I'm too excited to actually be getting back to a normal life and normal routine, that I just don't care how much I suffer the next few weeks... the light at the end of the tunnel is within reach now! Take a look, I pretty much have four more weeks left before Maintenance:

This week (11/15-11/21) : Stop steroids Tuesday, no chemo, and a count check with oncologist on Tuesday.

Next week (11/22-11/28) : Chemotherapy shots (ARA-C) 4x /week, oral chemo nightly (6MP), and a spinal tap procedure (Methotrexate) with IV-Cytoxin (final dose ever).

Week of (11/29-12/5): Chemotherapy shots (ARA-C) 4x/week (12/4 scheduled to be my last dose ever!) & oral chemo nightly.

Week of (12/6-12/12): Final dose of Peg (which means no more blood-thinning shots three weeks after this dose), and IV-Vincristine. I will most likely need blood and platelet transfusions early in this week as I recover from the ARA-C shots. This week will be rough, but my body will begin to recover and I will be on the road to maintenance!

An Opportunity for You to be a Hero

I received this alert from a friend. Long story short - a young man named Lee in the Phoenix area was diagnosed in July with Leukemia - just the type that I have (ALL). Unfortunately for Lee and his family, he is in need of a bone marrow transplant and his family members have not come up as matches for a transfusion.

If you will be in the Phoenix area Friday November 13th they will be sponsoring a drive at Allstate's Regional Office from 11:00a-5:00p
5343 N. 16th St.
Phoenix, AZ 85016 (first floor in the Maddison Room)

To participate in the Online drive (for anyone not in the Phoenix area) please follow the instructions below:
1. Visit www.bethematch.org BEFORE NOVEMBER 30th
2. Click on "Join the Registry" --> Join Now
3. Fill out the required information
4. Enter promo code: Lee
5. Fill out the consent form online
6. Please only make a monetary contribution if you feel inclined, this is not required
6. A swab kit will be mail to your house. Swab and send the kit back ASAP

If you can participate, PLEASE DO - you can help save this young man's life!

One Box Checked

Today I got the final dose - EVER - of Doxorubicin. Yes!!!! That's it there to the right. I also got Vincristine and started another week of steroids (dexamethasone). My counts were pretty good overall, and I get a week off chemo next week. I felt decent today but this evening the cloud is coming over, and I can start to feel the bus as well.

This week

I did not feel well at all this week until Friday. I have felt pretty decent since then. I got the H1N1 vaccine this week. Tuesday I get the final dose of doxorubicin (amen) and then start another week of steroids...

La La Land

Yesterday was a count check and a chemo day. I got hooked up to a halter monitor for my heart afterward and wore that for 24 hours. I also got to try a fun experiment with a colon cleansing medicine which kept me in the bathroom for long periods of time for most of yesterday evening and last night. My stomach and constipation issues are now on their way to being resolved... with some nausea and weird stomach feelings today. Monday I had excruciating nerve pain in my back and butt. But, since it was only a day of suffering, the doctors are not concerned about it. Today I woke up with a headache and I have been pretty sore and weak throughout the day. I feel a little as if I'm in La-La Land today... hope the writing doesn't reflect that.

Steroids - Part Deux

I am tired and exhausted. I have no energy. My face looks weird and is turning round. My head is aching. My body is aching. My face gets hot and flush throughout the day. I am moody, but mostly just grumpy. I am constipated. I don't have much of an appetite. I have problems focusing on my schoolwork. I don't really care about my schoolwork. I feel so weak.

If this is not from the chemo drugs - and, five days out, I doubt it - it is from the new steroid I am on this phase, dexamethasone. I'm on day 5 of 7 right now, and then have a week without it, and then another week on it.

I know Maintenance is right around the corner... but can this damn treatment be over, already?

Karma Doesn't Like Sarcasm

Last night we had a little adventure...

I started skipping heart beats last night while I was watching my late night shows. My oncologist wanted me to go get everything checked out at the Emergency Room because of my history with the pulmonary embolism and other heart issues back during the first month of treatment.

After basically a night of no sleep, a crappy ER bed, and a morning of a bunch of tests... the good news is that it is nothing serious. It is most likely the Doxorubicin drug... but - just my luck! - neither the oncologists nor the cardiologist who checked me out believe that it is harmful enough to hold my next two (and final) doses these next two weeks of the drug. I'm going to be wearing a heart monitor on Tuesday and Wednesday to make sure.

We got to the ER last night around midnight and left the oncology floor around noon today. None of us got any sleep and I just woke up after sleeping for four hours.

5 Days of Fun

Monday - I felt great. Had a doctor's appointment for count check and clearance to begin this last phase before Maintenance. My counts were mostly decent and high enough to begin.

Tuesday - early morning spinal tap procedure with anastesia and chemo, two other chemo drugs, and starting a week of steroids (this time it's dexamethasone). I was incredibly tired and loopy yesterday, and had some nausea and spinal pain.

Wednesday - today I had an appointment with the gastrointestinal specialist to discuss abdominal pain, constipation, nausea and vomiting that I have experienced on-and-off since April. Oncologists want to make sure all my internal organs are OK, so they checked liver and pancreas levels from blood sample (all good) and now the GI doc wants to perform an endoscopy to make sure I don't have any inflammation or ulcers in my digestive system. I don't think I do, but better safe than sorry. I am still incredibly exhausted and run-down from yesterday's nastiness... don't have any real mental, emotional, or physical strength today.

Thursday - tomorrow I am going for the actual endoscopy. They'll put me under anastesia and stick a little tube and camera down my throat in order to take pictures of my esophagus, stomach, and intestines.

Friday - I will be getting the second-to-last dose of Peg Aspariginase. This is the chemo drug they believe caused my blood clot back in May and is the reason I am on the twice-a-day blood thinning shots. Just one more dose in early December, and then 3-4 weeks later I will be done with the shots and this nasty chemo drug.

Nothing new

Nothing too new to report. Threw up yesterday randomly, it was strange! Other than that I have been feeling better... enjoying it before chemo comes again in a few days. My friend Lydia ran 11 miles today in her journey to help cure leukemia and lymphoma - can you help?

A Tiny Break

The chemo fog is drifting away and I'm starting to feel a lot better. I had some pretty bad neuropathy - nerve pain - the past couple days in my lower spine. Other than that, no major issues. I have had more energy and a much better appetite. I'm getting as much done this week as possible because next week is the start of the next phase: Monday and Wednesday are doctor appointments and Tuesday and Friday are chemo days. I'll really miss this phase that I'm leaving in the dust, because chemo every ten days will seem like heaven pretty soon. But the countdown to "Maintenance" is coming (and will start once I actually begin). Should be the best Christmas gift I've ever received.

Invictus

A poem for every cancer patient, mother,
and anyone else who has conquered
against the toughest of odds.

Invictus
by William Ernest Henley

	Out of the night that covers me
	Black as the Pit from pole to pole,
	I thank whatever gods may be
	For my unconquerable soul.
	In the fell clutch of circumstance, I have not winced nor cried aloud.
	Under the bludgeonings of chance
	My head is bloody, but unbowed.
	Beyond this place of wrath and tears
	Looms but the Horror of the shade,
	And yet the menace of the years
	Finds, and shall find, me unafraid.
	It matters not how strait the gate,
	How charged with punishments the scroll,
	I am the master of my fate:
	I am the captain of my soul.

Survival

Yesterday I got the highest escalated dose of Methotrexate and the regular dose of Vincristine. I am experiencing similar symptoms so far today - achey, exhausted, worn down, a little nausea. My counts had dropped lower, but not low enough to warrant being considered 'toxic.' Dare I challenge the chemo to make me toxic this time? Let's hope not. They sure are dropping though. If my body recovers enough within the next two weeks after dealing with this current dose, I'll start re-induction/delayed intensification at the end of October.

Sometimes I wonder who is winning: the cancer? or Me? The only way to kill the leukemia cells is to be routinely pumped full of toxic chemicals. These chemicals make me feel crappy, have weird issues with my stomach, kill of all my immune system so I can't have much fun. But the truth is that I'm kicking cancer's puny little ass. Yeah, I said it. Chemo sucks, and some days I want to curl up in a ball in the dark. Other days I want to yell at the ceiling or kick something to release the anger that I have because of cancer. When I'm not puking, I want to puke. When I'm not sleeping, I want to sleep. When the chemo has killed too many of my red cells or platelets, I need to be infused so I can stand up without passing out. And just when I start feeling better, I shuffle back into the clinic and get pumped full again. If cancer were a person, it would be the most vile, repulsive, evil and demonic being to walk the planet. (No, I'm not talking about Dick Cheney). But seriously - if it walked the earth in human form, I would seriously violate my lifelong code of peace and nonviolence in order to torture, dismember, and burn the guy. In the end I'm still kicking butt though... because in order to survive, there's no other choice.

Now, I don't believe that putting positive thoughts into the world will give me positive results. I have been a positive and caring person my entire life and I got cancer for no known reason. None of the kids in the hospital or clinic look like they have sent evil nasty thoughts into the world. Hell - some of the patients with nasty forms of leukemia and lymphoma probably don't even HAVE thoughts, they are so young. But just because I don't believe positive attracts positive, that doesn't mean I'm negative. No no no. Negative gets you nowhere. And just from observing people, negativity tends to attract negative. It's unproductive.

I like to consider myself a realist. And I guess the point of all this chemo-brain-induced nonsense is that there are days that are rough. I have had most of the worst days of my life during these past six months... and I'm sure to have a couple more before the year is over. But I survived and I am blessed to have survived. That's what life is all about - surviving. Surviving in order to pursue our dreams, find our soul mates, inspire others and be inspired, travel the world, and helping others survive too. Nobody deserves to have cancer, or HIV/AIDS, ALS, heart disease, or any other life-threatening disease. So I know I have a little leukemia fund raiser here, and sometimes I will plead with anyone reading to go donate blood (and to challenge existing donation policies that are discriminatory), or to engage in a civil discussion about health care in this country. My point is that we shouldn't just be dedicating ourselves to one month or one marathon for the things we care about. Yes, it raises a lot of money and awareness for a great cause - but every month should be breast cancer awareness month, black history month, HIV/AIDS awareness month, etc... These marathons and awareness drives are a part of a larger effort, but as human beings we have the great capacity to be engaged in multiple causes at the same time. Just imagine how much power we could harness if every month had the same dedication to breast cancer awareness as it does right now... until we cure it. We must be relentless. In order to survive, we must work together. Together we can beat insurmountable odds. Together with my doctors, my friends, and my family - I survived cancer.

Ups & Downs

This phase has been a mixed blessing. While I would hesitate to use the phrase that I have "felt good" at any point since April, this phase has been less intense than the previous two. That said, I still have lots of issues going on (I can read some of your minds - what else is new). Since you really want to know, the chemo drugs I am currently on cause constipation. It has also caused some stomach pain (stomach cramps, or irritation of the organ). When that is happening, my appetite has been less but it has generally stayed up. Headaches and body aches have been frequent. Nausea has not been such an issue the past couple weeks which I have been grateful for. And finally, and completely unrelated to cancer, my allergies have been really bad. I begin the last phase before Maintenance in just a few weeks. The light is at the end of the tunnel... or something like that. Hey - have I mentioned that my friend is running a marathon in January to help raise money for leukemia and lymphoma? Thank you for all your love, help, and support.

Zombieland

I woke up with the worst hangover this morning. What did I do last night? ...Oh - it's just from the chemo. I'm trying to keep my eyes open today, and I'm achey all over. The doc must have hit a non-sensitive spot in my spine this time, because so far I don't have any nerve pain. My pancreatic levels came back normal, which is good, and they did an ultrasound on my heart yesterday too in preparation for the next phase. If anything is wrong with that, I'm sure they'll let us know. On a brighter side, the weather is starting to be gorgeous around here.

Squirm

Counts were lower than last time, but still higher than they have generally been. Which means dosage of Methotrexate goes up again tomorrow, in addition to the spinal tap and Vincrinstine (given IV). My stomach has been irritated today (they're going to pull blood samples tomorrow to check my liver/pancreas), and I'm exhausted. I took a three hour nap and still feel like crap!!

Spoke too soon!

A couple days of the past week I have had abdominal pain, as if my stomach is really irritated. And today I threw up after breakfast, not really sure why. Other than that, though, I've been doing pretty good! Wednesday is a count check and Thursday is spinal tap and chemo.

Not too bad

This week post-chemo has been better than the previous two times. I have been sore and exhausted, but my nausea has improved a lot for some reason. No complaints there!! Staying inside and laying low to avoid the flu... I think this house arrest may last until the end of harsh chemo in December - but it will be worth it if I can avoid the flu while my immune system is compromised!

Protect Insurance Companies!

Protect Insurance Companies PSA from Will Ferrell

chemo day

Here's a quick update - today I got three chemo drugs - Vincristine, Methotrexate, and Peg Aspariginase. Not sure if I spelled the last one right. They increase the methotrexate dose each 10 days during this phase until my body becomes 'toxic.' Considering that my counts looked better on Friday than the previous week, we're not toxic yet. I may not have problems with these increasing doses, it all depends on my body. Update later this week - watch that Beyonce video below!

Halo

Beyonce sang my favorite song of hers, Halo, to a little girl named Chelsea with cancer. Here's the video.

Sick?

Yesterday I felt exhausted and had a runny nose all day. After taking an afternoon nap, I felt worse. Today the sniffles are not nearly as bad but I have a bit of a sore throat... I keep pushing the fluids to try and make it all go away. Also, my stomach and arms are bruising more from my shots, which probably means my platelets are dropping. It's a good thing I'm not getting chemo until Monday!

Chemo Sucks

Thursday I got chemo and felt decent afterward. Yesterday I was nauseated and tired. Last night I got the hiccups a few times after dinner and my normal "dry heaves" or waves of random nausea got really bad... After my evening walk they didn't get better so I took a thorazine, which is the strongest anti-nausea drug I have which they also gave me in the hospital to try and stop my hiccups. Needless to say it knocked me out within an hour: my brother had to come turn off my TV, I didn't wake up to pee (which I always do) and I felt exhausted when I woke up after ten hours. This morning I played with my oatmeal and felt pretty crummy. My mom and I went to visit Natalie in the hospital, another leukemia patient with the doctors I have, who turns 15 today. Happy Birthday Natalie! After that, I was really hungry, and my brother and I split a pizza. (No oatmeal, but half a pizza? Welcome to chemo land). I fell asleep for almost three hours this afternoon. I now have a headache and feel really tired still. YUCK!

Chemo party tomorrow!!

Vincristine, Methotrexate, and I have a date tomorrow. I'll tell you all about it later, but I'm guessing they're not my type.

Doing my best to update you on health care reform... and my journey with my own health care.
Quote below is from this article: click here

"Despite deep-seated differences among lawmakers, Obama drew a standing ovation when he recounted stories of Americans whose coverage was denied or delayed by their insurers with catastrophic results.

'That is heartbreaking, it is wrong, and no one should be treated that way in the United States of America.'"

PS - I wrote the White House to tell them my story. I'm sure it got to Obama's desk... ;)

Same old complaints, different day

The rest of the week produced nothing too new to talk about. Most of my complaints are not new... I have tons of school work, which drains the little energy I have. Nausea has a mind of its own, coming and going as it sees fit. It's usually worse in the late morning/afternoon, but that's still just a generalization. I take a nap nearly every day because I get so tired, so easily. I do have one recent development of pain in my middle back. It feels almost like a pinched nerve - which could be alignment problems or a result of the Vincristine (which zaps your nerves and is the drug that makes my fingertips numb). That's about it for now! Next chemo is Thursday.

Quick Upchuck... I Mean Update!

Today I have more energy, less fatigued, no need for a nap, less of a headache... but my nausea is worse and I do not like it!!! My tummy hates chemo! I mean, look at him:

Race for a CURE

Hello everyone,

http://pages.teamintraining.org/dm/pfchangs10/landrews

Please take a minute to go to this website that my bestest friend Lydia has designed for her Team in Training. She is raising a ton of money to help fund research and other great things in the area of blood cancers. Any amount of money will help, and it all goes towards the Leukemia and Lympoma Society. We'll be there to support her in January for her marathon as she has continually supported me and my family throughout this journey.

Hit by a bus

The best way to describe the way I feel today is as if I were hit by a bus yesterday. My whole body aches, I've had a headache, I am really weak, and nausea comes and goes. I napped for nearly three hours yesterday, and about four hours today in the afternoon. I had no energy to do any schoolwork. I think the almost month-long break I had between phases gave my body a lot of strength, which was hit pretty hard by everything yesterday. I think my body will get accustomed to being pumped with toxic chemicals every week again. Hopefully I start feeling better and get back to knocking out my schoolwork in the next couple days.

Phase III begins

I'm exhausted!! I couldn't get much sleep last night, and had to wake up at 6 for a 6:30 AM check-in time at the clinic. At 7:30 I was put under for about ten minutes for the spinal tap procedure, where they flush my spinal fluid with Methotrexate. Then, I got Methrotrexate and Vincrinstine IV through my port. Then, I got Peg-Aspariginase IV through my port, too. We were home by noon. I was really hungry and that was making me nauseated. But immediately after, I fell asleep for about 3 hours. I worked on some homework and took a quiz, and now I'm completely drained again. Hopefully I feel more energized tomorrow! The next chemo day is September 10. NOTE: There aren't a lot of good chemo joke pictures online. Someone should invent a funny cancer website. Because you mine as well laugh about the crap that happens to you when you have cancer. The other choices aren't as appealing.

Moving on

Good news - my counts are finally high enough to start the next phase, Interim Maintenance. Monday, very early in the morning, I'm going to be in the clinic for a spinal tap and chemo. I have been feeling good this past week, so I have enjoyed my break from the drugs... but it is time to move on and get through this! My Flagstaff visit was great, as well as other time I have spent with friends/family the past couple of weeks. I have never been so grateful for tons of schoolwork to do - but my summer has been incredibly boring, so I now will now have purpose to my days again.

Up the hill again

School started today. My biggest load that I've taken, but none of my classes seem extremely difficult. They will definitely give me something to do, though. I've felt pretty good the past couple days (knock on wood... but I haven't had chemo in three weeks) so I'm venturing out of the desert one more time before I start phase three next week.

Almost there...

To start the next phase, my neutrophil counts must be above 750. Last week they were 250. Today they were 690. Good news: my bone marrow is operating properly (all my other blood counts are increasing to normal levels, too). Good/bad news: another week off. School starts this next week, so I can get a head-start on everything. I've been having nausea when I wake up (morning sickness like a pregnant lady), but usually by lunchtime my stomach is strong again. I'm exercising every day, but cannot tolerate too much before my pulse gets too high or I feel sick.

And check out this great story: http://www.cnn.com/2009/HEALTH/08/20/cnnheroes.faith.coleman/index.html

Laying low

This weekend was OK and I just hung around the house, except for Cheyne's dinner party on Saturday and lunch with a friend yesterday. Yesterday I forgot to give myself my shot in the morning, but I was surprised that was the first time in two months that I've forgotten! Last night I was nauseated, and woke up the same way. I ended up throwing up my breakfast, but have felt better since then - I took some meds for that, too. Just hanging out and waiting until Friday's count check...

Dirty little counts

Well, surprise surprise. While my hemoglobin and platelets were normal levels today, my neutrophils and white cells were low. Too low to start chemo on Monday, so they are giving me another week. Too low to eat fruits and vegetables, which I have been doing all week. But hey - the docs told us last Monday that I was "good to go" for Flagstaff and that I should enjoy this week and the previous one. It's impossible to know what my immunity is doing, because I cannot tell when they are low (unlike the other blood counts). Sure - I love not getting chemo, but I'll be pushing the end of the year close with every week treatment is pushed back. And if I'm accepted into the M.Ed program, it will be pushing into that. So these 'breaks' as they are called are definitely a double-edged sword.

Health Care Reform - the real stories that the media isn't covering

Flagstaff was wonderful! I loved being with my friends and spending time in the local places where they make the most delicious food. I can't wait to get out of Arizona... but if you're stuck here, Flagstaff is the place to be.

You know... getting bills every week from this doctor or that company is quite frustrating. (NOT my cancer doctors - we have wonderful case managers with them who have helped us out). You think you have great insurance coverage - which I do and am grateful for that - and then you're getting bills for a doctor to call 911... or from a specialist the E.R. used who conveniently isn't contracted with your insurance... or from a different doctor who helped me while I was in horrifyingly severe neck pain for weeks on end - who says that your insurance provided wrong information for benefits and that, whoops, you're not covered for those services...

I know this blog is supposed to just be about my journey with cancer, and not my passionate views on politics. But politics is important for a reason... it effects the daily lives of real people. And health care has been a very important, very real piece of my journey with leukemia. So sue me for bringing up something that will make people upset - I am already upset. And it's my blog! If you don't like what I have to say, you don't have to read what I write. Fair warning.

We must pay attention to the current health care debate, and tune out the ignorant voices yelling things that aren't productive. It doesn't matter what ideology or party or religion you belong to --- health care is very simply a life-death matter. There are real concerns to be had about the different proposals in Congress right now. But no matter how much you disagree with President Obama's ideas on health care, he does not want to kill off old people or hold hearings on whether or not a person is "worthy" of coverage.

I wish to believe that every doctor's office, health care provider, and insurance company has the patient's health in mind when making decisions. I wish to believe the best about people, and the American people. But reality shows a different story. I have stated numerous times on this blog how amazing my doctors and nurses are - they are the heroes who saved my life. I am one of the lucky ones: I have insurance and have been able to get the best care available to me. Others are not so fortunate. Sure, I may have some legitimate beefs with the powers-that-be regarding some of my health care coverage... but at least I have it!

When I am no longer a student and have to provide for my own insurance, I would like to have insurance and not be denied it simply because cancer is a pre-existing condition.

I do not question the motives of those concerned with the costs of health care reform, concerns about the availability of doctors under a public plan, or other legitimate issues to raise when discussing such important legislation. I do question the motives, however, of those who are so deeply motivated to halt any progress or change to the unquestionably flawed system in this country. I wonder... if they were diagnosed with a life-threatening cancer, would they feel the same way? Would they want to kill any proposals for reform if they had no insurance and suddenly got sick?

I wish President Obama and the rest of our lawmakers the best in fighting for a healthier country. Anyone who cares about other people should be praying for the best outcome of this national debate. These news stories about these "town-halls" across the country where nutjobs are yelling and physically confronting members of congress are not the real story of health care. Those videos do get fantastic ratings on websites and on television, though, and that's why they're there.

Ask the mother who has had to quit her job to take care of her baby with lymphoma about her story with health care. Ask the senior citizen who has filed for bankruptcy because he can no longer afford to pay for his medication about his pharmaceutical coverage. Ask the college student who is diagnosed with leukemia about his concerns over the future of his health with a "pre-existing condition"... I'm right here.

These are the real stories about health care. Let's get them on the news.

Still Not "Planning"

The past few days I've been out a little bit, feeling OK. I get nauseated sometimes and I'm easily exhausted, but at least I'm not quarantined. I would write more about what I'm doing tomorrow and Tuesday, but I don't want to jinx anything. Let's just say I won't be in a nasty desert.

Back to basics

Well I've been feeling better after the blood products last week and this week. I still get nauseated throughout the day, and I also have had some forearm and hand pain from the chemo Vincristine. That's the drug that has made my fingertips (sometimes legs) numb and tingly.

I finally got to drive again yesterday - it's been two months since I last drove! I ran some errands today and finished up my grad school paperwork... It's all official now! I just have to wait a few weeks to hear back. I'm back to eating fruits & vegetables, which is great news because my wheat allergy (which causes my bad excema to flare up) is beginning to reveal itself again. The last three months I could eat whatever I wanted without my skin going crazy... perhaps it was the steroids or the really harsh drugs that made it go away. I guess that's the only good thing about re-induction later this year and the steroids I'll have to take again - bread, pizza, pasta, flour tortillas..

Also - since I got out to play in the real world, it's been months since I have been able to do a lot of 'normal' things that I actually enjoyed doing today. Things like driving, ordering at the drive-thru, filling out a bank deposit slip, going to the post office... I'll try never to take these things for granted again! It may sound crazy... but just lock yourself in a house for two months and you'll see what I mean. Promise.

Toxicity is funny... or not.

Well... my platelets came up! Everything else was down. I'm getting two units of blood again tomorrow. Got to talk about the next phase with the doctor... the first few weeks should be easier, but my counts will be knocked down again after. Guess we'll get to wait and see again.

Waiting

Thursday I saw the doctor for a count check: most everything was higher than Monday, but most of my levels were still extremely low. Since I was "borderline" for transfusions, the doctor said he assumed my counts would be coming up because I was feeling relatively good. The past couple days have been boring as usual, but I'm glad to be feeling better. I get nauseated every day, waves of the dry-heaves come over me, but then pass. It's annoying but of all the symptoms I've had the past three months... this is one of the least worrying, and one of the least painful. I go Monday to see how my blood has done over the weekend, and also to get my last dose of chemo for Consolidation... then I get almost two weeks drugs-free before I start Interim Maintenance. This next two-month phase is supposed to be much easier, they promise. We'll see! My fall semester, all online, begins at the end of this month. I'm taking 18 units but none of them should be killer. Then I'll graduate December 11, but I'm not sure if I'll be able to walk. I'm applying to NAU's Masters in Education program (grades 7-12, social studies) that operates in Phoenix and begins in January. I'll be a full-time student (keep my insurance) and then once I graduate in May 2011 I can get a job with a school district (get my own insurance)!

Pump Me Up

Mom and I were in the hospital for 10 hours yesterday and 4 today - I got two chemo drugs, tylenol, benadryl, anti-nausea medicine, one unit of platelets, and two units of red blood cells. As expected this time, my counts were very low. I feel a lot better than I did on Sunday, but it is rough sitting in a hospital room for that long with no TV on so many drugs. It was certainly worth it. My nurses are great, though, and we brought them doughnuts today!

Downhill

The past few days have gotten progressively more difficult as my body is being depleted by these past two weeks of chemo. My nausea has been pretty bad, and I'm very weak in general. I have a hard time getting up or moving around... when I do, my pulse shoots up and I get lightheaded. Tomorrow I get more chemo and maybe some blood, depending on how low my hemoglobin is.

Wicked

Yesterday I had some bad nausea but it got better in the afternoon and I was able to go see Wicked! We had great seats, and it was amazing. It was nice to finally do something "normal." My last ARA-C chemo shot was today, and I only have two more weeks of this phase left... I don't go in to see the doctor until Monday - when they will give me two chemo drugs and check my blood count. Hopefully none of my counts drop too much before then... if this month is like last month, I'll need transfusions next week.

Fighting back

Started week 6 of Consolidation today, which meant an Ara-C shot and a doctor's visit. My counts - to everyone's surprise - held relatively steady from last Monday. My body is cursing chemo and holding its own! Even so, I am still nauseated every day but it is manageable. I get lightheaded and short of breath when I get up from sitting or laying down, and shooting pains up my lower back and legs. These aren't horrible, though, and the doctor wasn't too concerned about them. I get three more chemo shots this week and I take chemo pills every night until next Monday. My body isn't invincible - I know, shocking - and my counts will be diving soon. Wednesday night I have a ticket to see Wicked at ASU which I bought way back in February... it seems very possible that the large dollar amount I spent on it will not go to waste, and that I will be able to go if I feel good enough!

Quick Update

This week flew by, thanks to Emend. I got in a few vegetables this week while my counts were up, but stopped yesterday because all of the chemo this week will be sending my body down again. And I don't want an infection! I have had some shooting nerve pain up my legs/lower back, probably from one of the chemo drugs, and my nausea was OK this week - and certainly much better than five weeks ago. Monday is count check & chemo day.

Chemo Crack

Emend is to leukemia patients what crack is to junkies: it's powerful and we'd most likely rob you to get some more.

Although I have not felt "good" in months now, I am feeling wonderful compared to five weeks ago when I was getting these chemotherapies... without Emend. Last time, no medicines seemed to help my nausea/vomiting and it took everything in me to get through it. This time (with this new trial drug), while my counts are high enough, I am able to get out of the house and stay active. I went out to eat and saw The Proposal with my grandma today, for example. I get Ara-C chemo shots 4x a week and 6MP pills nightly for two weeks now - this will kill my complete blood count so within a week I will most likely need transfusions (blood and platelets) and become neutropenic again (house-bound, no fresh fruit/veggies, no immune system, etc). Until then - I'm crossing my fingers that each day this week is better than its predecessor from 5 weeks ago.

Today I am thankful for each and every scientist and doctor who has paved the way for cancer treatments that I get - in the past, if cancer didn't kill you, it hurt (much more) like hell... and in the future, because of these men and women, they'll have a painless cure.

Cancer

Cancer can kill us,
but it can also make us come alive.
Some cancers are in remission, others are in relapse.
There is cancer in our skin, in our blood, and maybe in our bones.
It travels to our breasts, to our lungs, or perhaps to our brain.
The disease mutates the very essence of basic human biology.
Cancer can tear a family to pieces,
or build one out of the shattered remains of people who once were.
Cancer takes us down dark and unknown paths,
to possibly find an adventure we have always been waiting for.
While on the dark, unknown paths appropriately called Life,
cancer can be a friend, a lover, a teacher, an enemy.
We have all known cancer,
during different times, for different reasons, and by different names.
Above all, cancer teaches us a lesson.
Cancer teaches us that we know no lesson.
Cancer will make us cry.
Cancer will make us pissed.
Cancer will make us love.
Cancer will make us fight.
Hopefully, cancer will make us learn.

Jake Harvey 7/13/2009
**don't rip me off, cancer's also expensive

Emend: Miracle Drug?

I started Round 2 of Phase 2 today... these drugs I will get for the next two weeks really kicked my butt last time, but this time we have a new anti-nausea/anti-vomiting medication called Emend! It has worked for other patients and so now I'm trying it. It's still way too early in the game to call it a success, but in my current condition I am in much less discomfort than I was five weeks ago at this very hour. I got down a normal dinner, and have been able to stay hydrated without vomiting. No more Doctors this week... next Monday I get my counts checked again, and get pumped with the chemo.

Weekend Update

My nausea has been a bit better the past couple days, and I'm working on my paper. I start the next four weeks of chemo on Monday. Now that I've had a tiny break... I'm anxious to get this phase over with! The next one is supposed to be a lot easier.

the week off

- I've been pretty nauseated still every day. I get really hungry but don't have much of an appetite for anything... and my stomach doesn't tolerate eating much (quality or quantity).
- Buzzed my hair again because it's thinner, crispy (I don't know another way to explain it), and kinda ratty. The majority of it's still there, though.
- Counts are probably still too low to go out, so I'm not... but I'm stretching every day, walking most days after the sun goes down, and lifting light weights once or twice a week. Trying to keep my muscles active and not let the chemo get to them again!
- Trying to find motivation to finish my darn research paper.

A Break

I get a chemo break this week... my counts were not even close to being able to start the next four weeks. They're also checking into whether or not I have a virus or infection in my stomach, which would be causing my problems.

trying not to hurl

I feel nauseated and have abdominal discomfort for the majority of the day. The only time I have relief is in the morning before eating. The doctor said on Friday the chemo wouldn't be causing nausea still after I got it on Monday.... I suppose we will have to address this again on Monday.

Beautiful Bruises

I have attached some really appealing pictures of the bruising on my belly from my blood-thinning shots, the Lovenox! ENJOY!! :)

Doctor's visit this morning was the only major update for this week. Monday I'm going to have my chest/heart looked at again at the hospital's radiology center to make sure the blood clot is gone. The odd tastes and smells I've been having are a side effect of the chemo, but the nausea shouldn't be as bad as it has been - they ordered a new drug to hopefully help with that, and if it doesn't they are going to refer me to a GI specialist. My counts are coming back up, but most of them are too low to start the next 4 weeks of treatment on Monday. I am going in on Monday, however, after the radiologist, to check my counts. The doctor bet they wouldn't be ready but the nurse practitioner bet they would. Still losing some hair, the top of my head doesn't look normal but I'm growing it out some more just to see what happens!

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.

Ups and Downs

Thursday afternoon I began to have really bad pain in my lower back. Hours later, the pain had shifted to my legs - mostly in/around my knees. I was up throughout the night because it hurt so bad, and Friday morning all my bones and muscles ached... except my back and knees were the worst. We called to make sure this is normal - and it is. All the chemo drugs, and the steroid, cause muscle weakness which strains the joints. They have been having me do squats at the visits to make sure my muscles weren't too weak. It appears as though it all hit me on Thursday.

Friday was rough, but the weakness and pain weren't as bad as they had been through the night. I went out to lunch with family and that took a lot out of me- I felt really exhausted and nauseated halfway through and we left early. I rested the rest of Friday and finally got a full night's sleep.

Saturday I woke up feeling much better, but with some weak knees and pain in my legs still. I was able to attend my brother's graduation party and after parties with both families without getting sick. I was worn out by last night and took a break, but had a really good day!

This morning I woke up and went to breakfast with family before they left. Aside from some knee pain and bad neck pain, I was feeling fine and took some tylenol. During breakfast, though, I started feeling nauseated and clammy. My mom brought us home and I immediately threw up. My stomach felt better after that, and I slept for four hours. I ate lunch and my stomach feels good now... although my neck pain is awful and I have a headache. Hopefully I can see the chiropractor tomorrow.

Done with "Induction"

This morning I completed the first phase of Induction which lasted 28 days. I had a procedure where they gave me some chemo in a spinal tap and took a bone marrow aspiration to check for leukemia cells - we should hopefully have the results, that I'm officially in remission, tomorrow. They also removed the PICC line, which means I can shower normally now and not have tubes hanging out of my arm... yay!

I'm really exhausted from the past week, have no energy, and my muscles are really weak. Other than that, feeling good. My arms are so weak that when I lifted a magazine up to read earlier, my hands were shaking. This is from the steroids still in me, or the anastesia from this morning, or both. My uncle is coming over to shave my head again since I haven't lost any hair... I'd rather look bald than have a little hair that you can't do anything with.

Family is all arriving tomorrow for Cheyne's graduation this weekend. Hopefully I'll get a good night's rest and have a bunch of energy by the morning! I'm off from chemo or any procedures until Monday June 8 and have a ton of plans for next week because I should be feeling really good! Movies, lunch and dinner dates with everyone, getting to the gym, a day trip to Flag...

Last dose

Just had my last dose of prednisone this evening. It will take a few days for the steroid to leave my system... but hallelujah! I made it!

Back at home

Well yesterdays prediction was correct. I was released this afternoon from the hospital: feeling good still, and the doctor said my heart sounds healthy and strong again. Hospitals don't lend themselves to a good night's sleep, though, so I suspect tonight I'll get some rest! I go Thursday early morning for another bone marrow check, and a little dose of chemo in a spinal tap. Last time they did that, besides being knocked out most of the day, I didn't really have any side effects. The doc said I should be feeling pretty good the next couple weeks, and that I can visit Flagstaff without any trouble. Let's hope that this is the case - no more bumps in the road - and that the next two weeks (and the rest of this year wouldn't be bad, either) are smooth sailing. I start the next phase Monday June 8.

The prednisone steroid that I have been on for the past 28 days will end tomorrow, and that is going to make me one happy guy. I will finally stop eating enough for 17 people, and I will stop having insomnia and the other mental things that have come with this drug. My muscles have disappeared since I have been pretty immobile for nearly the past two months now, since I became ill. My torso and face are enormous but this will all go away soon, too! I can get back to the gym and eat a normal diet within the next week. I know this shouldn't be my biggest concern - you know, the whole 'I have cancer', thing - but it has been. I guess that is a blessing and proves my first month - besides these past three days - wasn't too bad, after all.

In the hospital

Yesterday morning I had to come to the emergency room because my heart was beating irregularly and I was having chest pain when I stood up. My mom and I were in the ER for five hours, and they determined that I had a blood clot in my lung. Clotting is a rare side effect from one of the chemo drugs, usually seen in older leukemia patients like me. They started me on a shot in my stomach that I have to take twice a day pretty much the rest of this year, to thin my blood to prevent the clotting. I'm in the Peds Oncology unit now where I was the first week of treatment. Around 6:30 last night my heart finally settled down and has been beating normally since, and my pulse has come down. I also am able to stand up without any chest pain, and am feeling good like I was on Saturday. I had a bunch of tests done this morning, and will be in the hospital for observation until tomorrow - They originally thought until Thursday, but if all of the tests come back OK I will hopefully leave. Everything should be back to normal now, and I will give a better update from home.

Saturday

I had a good and productive day - let's see... I got one school assignment done, went on a walk, only had four meals and didn't overdo any of them (I call this progress!), spoke with several people on the phone, got back to people in e-mails, read through NAU's Masters in Education program/application, helped my mom put up all of my wall stuff so my room is now complete, watched a movie, took a little nap, and read a bunch of my book. I only got a headache today, which was solved with two tylenol. Take that, cancer!

Mind over... mind.

I had another decent day despite receiving chemo yesterday! I didn't sleep well, but that's from the steroids. Very little energy, but little nausea and only a brief headache today. It's too bad I can't stay on these drugs the entire treatment, since I'm doing so well on them! I mean, the steroid sucks, but that's my only real complaint.

Recent developments: still have my hair (it's growing back since we buzzed it two weeks ago)... losing more sensation in my fingers - but still have enough to type!... losing taste in my buds, which means adding salt or salsa or garlic to everything :)... my facial hair is growing but very slowly.

My body is still dramatically changed from the prednisone steroid - 5 more days of this crap. The cravings make me eat so much, that I often get stomach pain from eating too much. So today I've decided that my goal for the next five days will be to have enough of my own mind power to conquer the mind being controlled by the steroids. I'm sick of looking like an oompa-loompa, and I'm sick of feeling incredibly full all day. I can do this!!!!

Chemo day

My last treatment of the first phase, Induction, was this morning. We spoke to the doctors about yesterday's events... they told us that all of my heart issues are related to the steroids and to anxiety. My heart is strong and healthy, and should be back to feeling normal after I'm off prednisone (Wed). I get a break now until Monday June 8 from chemo, and should feel pretty good after this weekend. I don't know if this means I will be able to travel to Flagstaff for a day to visit friends and eat at my favorite places (Martannes & Burritos Fiesta)... but we will see. I will start to lose the fat I've been storing, lose my crazy appetite, and lose all of the other crazy symptoms associated with the steroid. The next phase is a bunch of different drugs and protocol, so while they tell you what to expect... we really won't know how I do until it happens.

So far today I feel good and hopefully I don't have a rough weekend - like last weekend! My counts were up again today even more and I FINALLY can have fruits and vegetables! I'm so excited... I haven't had lettuce in a month - so we got my Subway sandwhich on the way home from the clinic today. I also can go out once I feel up to it - the movies! And I should be looking/feeling good for next weekend when my brother graduates and all of our family and friends are in town.

Overall good news for today!

Hospital today... for nothing

Since the beginning of my illness, I have had heart 'issues' - namely a fast pulse, high blood pressure, and occasional palpitations. On Monday the doctor issued a prescription for a medicine to help this - he said it is most likely a side effect from the steroids - but insurance has taken their sweet time authorizing it. I was having palpitations today, really wanting to finally get this pill. My mom called the doctor's office to let them know, and their strong advice was to go to the Emergency Room to make sure everything was OK with my heart. I really didn't want to go to the hospital - I have been feeling relatively good since last Thursday's chemo - but my mom and I followed the recommendation. My EKG was normal but my cancer doc told the ER doc he wanted to admit me overnight to monitor me! I'm getting chemo in the morning and have an appointment at 9 AM. We were so frustrated. I told the doctor that I was fine, I wanted to go home, I just needed the medicine! Long story, short: we were in the hospital for four hours today and my heart is fine. I got the prescription approved, finally, and took it as soon as I got home. Now I am at home, will watch American Idol, go to sleep, and be back tomorrow first thing in the morning for chemo. It was a giant waste of time, and now we have learned our lesson about calling the doctor!

On another note, my body is still changing dramatically. My face, waist, stomach, and chest are all ballooning up - I look like I'm a pregnant woman. It's really gross... but I'm only on this stupid steroid for one more week...

Counts are up

Yesterday at my doctor's visit, my blood counts were up enough for the doctors to grant me one of my wishes - I can go to the movies today! Kelly and I are going to see Star Trek at a matinee, before the theatre gets busy. Still no fresh fruits or veggies until my ANC goes above 500, but I'm super excited to be able to leave and see this film! I have been feeling good, and we're still rearranging my room back to where it feels like "mine" again. It should be done this weekend. Mrs Britton came by yesterday for a visit, and it was nice to chat with her.

The steroid I am on, predisone, has made my eat like crazy (I've mentioned this before). But, very surprisingly, I have lost about 15 pounds in the last three weeks despite my insane appetite. I have noticed the effects of the steroid on my body shape - my arms and legs have been getting skinnier but all of my body fat is surrounding my stomach and butt... I'm starting to look a bit preggers! Not to worry, though, I only have to take the steroid for 9 more days... and I'll be able to join the gym again, too :)

They gave us the 'road map' for the second phase of treatment yesterday as well. I will be done with this first phase next Thursday (May 28) and will get my PICC line out of my arm. I basically get a week break then - no chemo, no steroids, no blood draws. This is perfect timing for my brothers graduation on Saturday the 30 when all of our family and friends will be in town... I should be feeling pretty good that weekend. The following week is when I will have the port put in my chest and begin the 9-week (ish) second phase of chemotherapy called Consolidation. This phase has different drugs, a different regimen, and will have different side effects. But that is weeks away--- and it sounds like the next two weeks will be fairly good for me and my family.

Things to be thankful for

Yesterday, Auntie Dawn, TJ and PJ came by and brought me some pizza - which I have been craving!! I ate the whole thing. It was awesome to spend some time with them, too.

Had many visits today - Lydia & Michael, my grandparents, and Dad & Abby.

Feeling decent again - we must have really figured out this round of chemo's anti-nausea meds. I still get fatigued very easily, and my fingers are more tingly... but I can't complain too much.

I made a lot of calls today, too. I like staying in touch with everyone, making sure everyone knows I am doing well. Took a couple cat naps, and I am reading Harvey Milk's biography "The Mayor of Castro Street."

This week's goals are to maintain my energy level, take some walks, and finish one of my spring courses.

Thanks again to everyone for their continual love, support, prayers, good wishes, gifts, food, visits, ETC! I have an amazing support system.

SPECIAL THANK YOU TO THE VILLALOBOS FAMILY, owners of Burritos Fiesta in Flagstaff. Anytime anyone is passing through Flagstaff, stop on by and grab some amazing fresh Mexican from Oscar & his family. They sent down an ice-chest filled of great meals for me and my family. I worked there for nearly two years, and their gift was amazing. Once I am able to leave into the real world, I will be visiting my Burritos Fiesta family ASAP!! They are located at 1530 S. Riordan Ranch St. #405C, Flagstaff, AZ, 86001 *between Hastings and Bookmans* Phone: 928-774-3600... Tell them 'Jacobo' sent you...

Prednisone

One of the drugs I am on this first month of Induction is called prednisone. It is a steroid and helps the chemo do its job.

It has been in part responsible for my difficulty sleeping and crazy dreams.

Additional effects: swelling, rapid weight gain, abdominal pain, bloating, nausea and *my favorite* changes in the shape or location of body fat.

Thankfully, I only have to be on this for a couple more weeks. Until then - I'm looking more and more like an Oompa Loompa!

Side effects

I have lost more of the sensation in the tips of my fingers - sometimes it's hard to open a bottle of pills, but so far it's not bad. I have new mouth sores, but again, they do not bother me yet. My head is shaven, but I haven't noticed hair falling out.

So far, I have been able to keep nausea under control this first 24 hours post-chemo. Let's hope it stays this way!

Wanna help leukemia patients like me by donating blood? Visit:
http://www.unitedbloodservices.org/donatelocations/az.html

5.14

Today was a chemo day - my mom and I were at the outpatient clinic for 8 hours today. Doctors visit, chemo, then two units of blood transfusions. I am on a lot of medications so I'm feeling OK this evening. My cytogenetic report came back and I do not have any of the 'bad' things they were looking for in my DNA... another 'blessing' as my mom says.

5.13

A new side effect from the chemo started today - I'm losing the feeling in the tips of my fingers. Besides that - I had a great day with several visitors. My dad, Kelly, Cassie, and Jessica all came by the house today and broke up the monotony.

Kris & Adam are in the Idol finale! :)

Tomorrow morning is my third chemo session so I'll most likely be under the weather for the next several days - I am grateful for these past upbeat days.

Be a hero - donate!

Please remember to ask about platelet donations... they are the donations you can indirectly help me by helping all leukemia patients in need of this vital part of our blood.

To schedule an appointment to donate blood, please call 1-877-448-GIVE (4483)
Appointments are recommended.

Tuesday, Wednesday, Thursday: 10 a.m. to 7 p.m.
Friday and Saturday: 7 a.m. to 2 p.m.
Sunday and Monday: Closed
Days and hours for platelet donations vary.

visit for more information: http://www.unitedbloodservices.org/donatelocations/az.html

Chandler
1989 W. Elliot Road, Suite 32
Chandler, AZ 85224
(Dobson & Elliot Rd.)

Mesa
East Valley Center
1337 S. Gilbert Road, Suite 101-104
Mesa, AZ 85204
(Gilbert & Hampton)

Scottsdale
1405 N. Hayden Rd.
Scottsdale, AZ 85257
(Hayden & McDowell)

The steroids I am on are making me have more crazy dreams, a voracious appetite, and a hard time sleeping - but I have had a great day regardless! Thanks to Kelly, Lauren, and Ian for visiting me and bringing me some AMAZING food from our favorite spot in Flagstaff called Martanne's. :)

** I also have to say a special thank you to my stepmom Rhonda and little sister Abby for their continual amazing meals which helps me and my mom out at home. In addition, my mom's co-workers have been awesome and have provided our family with food,too! You guys are incredible **

Monday 5.11

Had another better day today... really fatigued but no pain or nausea! Some energy enough this afternoon to finally get back to reading for school. I take a lot of naps and have crazy dreams (from the steroids, apparently..)

Doc's appt this morning - everything is looking good right now, chemo is on thursday and I will only have to leave the house if I get a fever or something crazy like that.

Lauren, Ian, and Kelly are bringing me good company and great food tomorrow... Cassie and Jessica are doing the same on Wednesday. I have great friends!!

OH and Uncle Todd should be by tonight to give me a short buzz - my hair should start falling out this next two week period, and having a tight buzz will make the experience a lot less... 'hairy.'

Happy Mom's Day

I woke up this morning with enough energy and spunk to make (if I say so, myself) an amazing breakfast for mom, rob, cheyne and I. Cheesy scrambled eggs, seasoned potatoes, tortillas, and apple sauce! By the time I was done cooking, I had to lay down again... although-- it was totally worth it.

I knew how special my mom and family was before this part of my life, but I can't imagine living day-to-day with cancer without such a fantastic and loving mother!

Read this

http://thinkprogress.org/2007/05/23/fda-blood/

Still trying to get some answers about donating platelets in the Chandler area. Go to The Red Cross's website if you live outside of Phoenix, they may have a clinic near you. Hopefully I'll have some concrete answer about donating platelets and blood by Monday...

Good news

Today the docs called - my bone marrow biopsy from yesterday showed NO leukemia cells in my bone marrow! This is very good news and ensures that I won't need an extra phase of chemotherapy next year.

I have been fighting some pretty bad nausea and no energy since yesterday's chemo treatment. Tomorrow shall be a better day...

Jake is Online!

Thanks to my Auntie Dawn, everyone can keep track of my life with cancer with this blog.

I was diagnosed with acute lymphoblastic leukemia on Tuesday, April 28, 2009. I have since received countless loving messages in the mail, e-mail, through texts, calls, and facebook messages. It is difficult to appropriately update everyone in a quick time, so I thought for all things Jake & Health related, I will refer family and friends to this site.

I was released from the hospital on Monday, May 3. It is highly likely I will end up in the hospital again before my first four-weeks of "Induction" will be over - although I'm shooting to be in the minority on this statistic.

My family and I cannot say Thank You enough to everyone who has sent food, gifts, and good wishes to us this past two weeks. If anyone is wondering what they can do to help, I strongly encourage you to donate platelets! Donating blood is crucial, and I needed some during my stay at the hospital. But I needed much more platelet transfusions - donating them is similar to donating blood, it just takes a bit longer and it is not as popular. Please donate platelets and help other leukemia patients like me. After all, we are all in this together!

I will hopefully have more information as far as groups and centers to donate to, websites to go educate yourself, etc... but this is it for today! Thanks for stoppying by and sending positive thoughts!

Yes, We Can!

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell. - Lance Armstrong

xoxo

Dawny