Checking In

I've been here in Los Angeles for a few days now. It's kinda boring. You could send me some messages, please. Luckily I'm doing pretty well with this treatment though. Nothing too crazy going on, but that's kind of nice.

Los Angeles

I'm in the hospital in Los Angeles going through a new kind of treatment. I'm going to be doing two autologous stem cell transplants in a row. This is a little bit different that my previous transplant, in that there are two in a row, and I will be getting different chemotherapy drugs.

(for reference, this is my post from the last time http://imfromchicago.blogspot.com/2010/03/stem-cell-rescue-actually.html)

So far I haven't been doing much, just relaxing in my isolation room. I do have a big window in here, so I get plenty of sunlight. Other than that, it's just kind of boring. There isn't much to do here.

Anyways, I'll keep doing some occasional updates, although I don't foresee anything that interesting happening.

Thanks for tuning in! Talk to you next time!!

Planning on coming back

After a fairly long time of not writing anything on here, I think it's time for me to start blogging again.

New things are happening in my life, some related to treatment, some not, and I think I need to have a place to share that with the world again.

Plus, now blogger has an iPhone app, so I really have no excuse not to.

Look forward to some posts in the next few days.

- Miles

Tumor Markers

I know I haven't posted in a while, but that's a good thing in a lot of ways. I haven't posted recently because medically there hasn't really been that many new developments, which I see a a really good thing. I'm tired of all the "excitement" that comes along with cancer.
Today I did receive some news that does require sharing. It requires a little set-up first though.
One of the characteristics of the type of cancer that I had is that the tumor cells create chemical compounds called tumor markers when they are active. The two compounds that they create are Beta-HCG and Alpha-fetoprotein which can show up in the bloodstream and the cerebrospinal fluid (if the tumor is on the brain or spine) for a total of 4 measurable tumor markers. Just before and during my treatment, the levels of these compounds were well above the normal levels for humans, but they slowly decreased with each stage of treatment. After the stem cell rescue procedure, all but one of the tumor markers, Beta-HCG in the spinal fluid, were down to normal levels. The tumor marker was only slightly elevated, but it was enough to cause suspicion that there might still be active tumor cells. Because of this my radiation dose was increased to the maximum limit, in the hopes of reducing the tumor marker to a normal level. Also, as part of the stem cell rescue clinical trial I was involved in, I needed to start taking Isotretinoin in the hopes that it could halt any remaining tumor cells from growing. The past few times I had had my tumor marker levels measured, the Beta-HCG in the spinal fluid had still been just slightly elevated. The level had stayed at pretty much the same place since the end of my stem cell transplant.
The news that I received today was that my latest blood and spinal fluid draws showed all the tumor markers to be in the normal range! I'm incredibly happy with this news. Before, even though the tumor markers were constant and did not rise, there was always the ambiguity of the fact that one was slightly elevated. There was always the chance that at some point in the future it could rise, the horrible thought of the possibility of a second recurrence. Now, the fact that all the tumor markers are normal is a huge relief. I'm still going to continue taking the isotretinoin just because in this situation I would much rather be safe then sorry, but hopefully when that's over I'll be done with this whole extravaganza and it'll just become a memory and I'll be able to continue with my life.

A Very Special Visit

This past Tuesday I had a very special surprise visit at my house, and what a surprise! My dad's friends Michael, Marcus and Allison were able to get my favorite hip-hop artist and probably favorite celebrity, Kanye West, to come to my house so I could meet him. As if that wasn't enough, Lupe Fiasco, another one of my favorite hip-hop artists, was with him. My dad had been trying to get me VIP tickets to a Kanye West show, but because of the stem-cell transplant treatment and my compromised immune system, travelling and large crowds are both things I have to avoid. When my dad's friends Michael, Marcus and Allison found out about that, they were able to arrange it so that Kanye West would come to me! I want to say thank you to all of them and my dad for putting this thing together. If you guys are reading this: Thank You!!!

Kanye and Lupe were both incredibly nice, and despite the fact that it was Kanye's birthday and they were probably very busy, they stayed for well over two hours. Also, Kanye's friend(/manager?) Don was really nice too. My two friends Aidan and Jesse happened to be visiting, so they were able to meet Kanye too. We all had a great time and afterwards we were still kind of in shock.

During his visit, my mom and Lupe Fiasco talked for a while. One of the things they talked about was the restaurant Pappadeaux's that he liked in Texas. My mom told him there was one in the suburbs of Chicago to which he replied, "Well you have to go there!" So Lupe Fiasco gave my mom some money to take us all (Me, my dad, my brother, and my friends Aidan and Jesse) out to Pappadeaux's.

Overall it was a pretty awesome experience and I'm so thankful to everyone who was involved. It is definitely something I will never forget.

Below are some pictures from their visit, but I have to ask that you only view to photos on my blog, please don't download them or send them around. It was totally cool for Kanye to do something like this, and I don't want random pictures of him getting spread around on the web. Thanks.

Book Award Video

Through school I was nominated for this thing called a Junior Book Award. Because I wasn't going to be able to be at the awards ceremony, the teachers who nominated me came to my house and we made a video that they could show during the ceremony. Here is that video:

Miles Book Award from Lindsey Caplice on Vimeo.

Miles For Miles Pictures

Also:

Last Day Of Treatment!

Today was my last day of radiation, so my last day of treatment. I'm incredibly happy to finally be done with it! Now I just have to focus on recovering and getting back into the swing of things. I will probably keep getting more tired for a few weeks because the radiation stays active in your system for a little while even after you finish treatment, but hopefully I'll start getting more energy soon. Also, due to the residual nature of the radiation and the fact that I was treated with it last year, my body has seen the maximum amount of radiation it can get, so I will never be radiated again (except for small things like x-rays).
So overall I'm pretty excited to finally be done with treatment, it was a pretty long shitty experience and I'm looking forward to a nice easy uneventful recovery. I'm already on that track: I'm pretty tired most of the time and I still don't have a lot of my strength back, but that's about all I can complain about.
I will continue to update the blog, just with updates on how my recovery is going and most likely more pictures, so thanks for reading and don't take me off your bookmarks list yet.

The PICC is Out!

Today I got my PICC line taken out. It had clogged up and the nurses were not able to draw blood from it, and it was really hard to even push fluid through it. The usual clot-busting medicine they use to clear up clogged lines, tPA, didn't work, and I'm almost done with radiation and I wouldn't need the PICC for anything else really, so I got it taken out today. Now for my weekly blood draws I'll just get poked, which isn't much of an issue for me because I have good veins and it's only once a week. And if I ever need transfusions, I can get them through an IV.

Overall, I've been feeling pretty good. Today was my 11th radiation session and I only have 3 more to go, then I'm done! Radiation was every weekday, but the actual treatment is only about 10-15 minutes. Most days I was in and out in about 35 minutes, just due to waiting until they were ready for me, changing into a hospital gown, and the actual treatment. As far as side effects go, I've been taking anti-nausea drugs since the beginning, so nausea hasn't been a problem. I have noticed that I'm getting more tired than usual. I'm overall more tired, and I get exhausted much more easily. Since all this has started I've rediscovered how nice naps are. I have been getting a sore throat which is because I'm getting full brain and spine radiation, and my throat catches some stray radiation. Other than those side effects, I've been doing pretty well. The hardest thing to deal with is the fatigue, and that'll probably continue to get worse for a little while after I finish radiation treatment. But in a few weeks I should start getting my energy back and start getting back into the swing of normal life.

So just to clarify: I have 3 more radiation treatments from this point, my last one will be on the 25th of May. That will mark the end of my treatment, and the only reason I'll have to go to the hospital after that is for check ups. I'm extremely happy that I'm almost done with all this, and I just have one thing to say: It's about time!

Pictures!

I've been home for almost a month now and I'm feeling much better than I did when I left the hospital. I'm slowly getting my strength back. I've stopped using a walker to get around, I just walk regularly now, albeit pretty slowly. Here's a picture of me with my walker from a while ago, note my "skinny chicken legs":

Also, for the past week I've been able to make it up the stairs to get to my room, so I've been sleeping in my own room again (!!!). That's been pretty nice, and it's good exercise to have to go up or down the stairs.

In order to leave the hospital when I did I had to be able to continue taking a certain antibiotic that was only available as an IV fluid. Luckily there are ways to take IV fluids at home. This particular antibiotic came in a pressurized ball so all I had to do was attach it to my PICC line, unclamp it, and wait about an hour and a half for it to finish pushing the fluid into me.

Before

After

It was a very strange thing, but I'm glad it exists, otherwise I would've had to stay in the hospital for a few more days to keep getting the antibiotic.

The only treatment I have left at this point is radiation, which will start on Wednesday. The radiation is outpatient at the Northwestern hospital downtown, which is nice because I don't have to stay in the hospital, but annoying because I have to go downtown everyday for a process that only takes about an hour. I'm going to have radiation every weekday for 2-3 weeks and then I'll be done with treatment and just have to focus on recovery. The radiation should be nowhere near as bad as the chemo, the biggest side effect is that it'll wipe me out and I'll be tired for a few weeks after I'm finished with the actual treatment. I'll keep the blog updated as I go through the actual treatment, and hopefully I can get some pictures of all the equipment.

Just Another Update

Just checking in to let you all know I'm doing much better since leaving the hospital. I've been home almost  3 weeks now and have been enjoying it much more than being in the hospital. I'm still pretty immobile, my legs are really weak, but I have noticed them getting stronger as the time goes on. I have exercises that I have to do that the physical therapists at the hospital gave me to do, and they are definitely playing a big part in me getting my strength back. They also make me quite sore, but that's a good sign.
Now I'm able to walk around my house a little bit and I have only been using my walker when I need to go somewhere outside of the house: like the hospital for a checkup. I'm still incredibly tired, and I get exhausted pretty easily when I walk around, but it gets easier each day, and the independence it affords is nice.
Recently I've been able to return somewhat to normalcy in some regards. Because I can now walk on my own, I can get up and get myself some water or walk to the bathroom by myself. It's not much, but not having to call out and get someone to help me get up and walk to the kitchen or the bathroom is a huge convenience. When I was so dependent on others to get around it was really frustrating because if I tried to do anything by myself, my legs basically just wouldn't work. Now they do work! (somewhat) and it's great!
Another big step for me was that I was able to get up the stairs and go to my own room yesterday. Since coming home I have pretty much stayed in my living room. I sleep on the couch and someone else sleeps on a futon mattress we brought into the room, just in case I need something during the night. I still don't feel comfortable getting up and walking by myself at night. But I did make it upstairs to my room yesterday. I had to go up backwards on my butt up the stairs, and I only stayed a few hours because I still thought sleeping downstairs was a better idea, but being able to see my room and lay in my own bed was awesome. The last time I was in my room was March 5th, so as you can imagine, I missed it.
Medically everything is going really well too. Since leaving the hospital, my blood levels have been good, either rising or staying at the same place. This is a sign that the stem cell transplant was a success and that the stem cells have started producing blood cells again. I did have to have a transfusion of platelets on Wednesday the 14th, but that's the only transfusion I've had since leaving the hospital. Usually, stem cell patients have to receive many more, so I've been lucky in that regard.
The next step of my treatment is going to be radiation. With the last time I was treated, they radiated my full brain and spine, including the area where the more recent tumor was. However, that area did not receive the full dose of radiation that it can handle, because there was no tumor there at that point. So I'm going to get radiation just to the area where the tumor was this time to bump it up closer to the maximum of what it can handle.
I'm not sure exactly when radiation will start, it hasn't all been finalized yet, but it should be within the next few weeks. The process will be pretty much the same as last year: it's going to be downtown at Northwestern, it'll be everyday from Monday to Friday, the actual radiation process will only take about 10-15 minutes a day (somedays longer if they need to take x-rays), and the whole process will probably take about 3-5 weeks. As I know more and as radiation starts, I'll update the blog to let you all know what's going on.
Just so you all know, I will eventually document my hospital stay during the month of March in more detail, so if that seems a little lacking it should be better soon.

To sum up, I'm really happy to be home, and happy to be feeling stronger. The time I was in the hospital for the stem cell transplant was really a pretty bad time, so I'm really glad it worked and I'm out now. I have a few weeks to recover before anymore treatments, so I have some time to just relax. And hopefully radiation will go smoothly and I'll soon be on the road to recovery!

Back Home, Finally

I finally got home on March 30th after being in the hospital since the 5th. Needless to say I'm so happy to be home.
The last week and a half in the hospital was a little crazy. About 4 days after getting my cells back I got a fever and 3 bacterial infections and had to be transfered to the ICU. I don't remember too much about the first few days in the ICU, but apparently my blood pressure was dangerously low and I had fluid build up in my lungs. I had to wear a special pressurized oxygen mask to help me breath for a few days. After a few days I stabilized and just had to stay in the ICU until they had an isolation room ready for me back on the Oncology floor.

There's a lot of stuff to cover about the last month, which I'll do at some point soon in the future, but for now I just want to put up a post to let people know that I'm home, and have been home a little over a week now.
I don't feel great, I'm really tired and I've lost almost all my muscle mass, so I'm really weak. I got a walker and it is huge help, I'm able to make it around semi-independently. I'm doing physical therapy to regain strength in my legs, so soon i should be able to walk unnassisted.
But all in all, I'm doing alright, and I'll update soon about the rest of March.

Stem Cell Rescue, Actually

I've been in the hospital too long already and I have to stay here longer. I got my stem cells back 4 days ago, but those take a little while to kick in. Currently I just feel worse and worse every day because of the high dose chemo: it keeps affecting your body for a while after you actually get it. I feel pretty lousy right now, and I'll probably feel worse before I feel better, but there are some positive aspects.
All the doctors who come see me are all satisfied with how things are going. I'm still eating (kind of), I haven't really been nauseous or thrown up (other than when they gave me my stem cells back, that was the only time I threw up) so I can keep some food down. Also, during the time I was getting the chemo called Thiotepa, I had to take a bath every six hours. The chemo is released from the body through the skin, so on top of feeling miserable, there were five days during which I had to take a bath every six hours. Needless to say, I'm glad that part's over.
I won't lie: I feel pretty horrible and I wish I didn't have to do this. There's nothing I would rather do than just go home right now.

Stem Cell Rescue (Pictures!)

I started the stem cell rescue portion of my treatment on Friday the 5 of March. This marked day minus 10 in my stem cell rescue. Currently it is day minus 5 and I have finished the first five days of chemo, which were pills called temozolomide.

That's one dose: I had to take 7 pills twice a day.

Today I start two other chemos: carboplatin, which I have had before, and thiothepa, which I have not had before. These chemos will be done by day minus 3, and day minus 2 and 1 are days of no medication and being moved into isolation.
Isolation is just a single patient room with special air filtration to keep out all chances of infection. Then on day 0 they give me back the stem cells that they had harvested previously to help jumpstart my recovery process. After that, I just have to wait for my blood levels to get to an acceptable level to be able to go home.
So far days minus 10-6 have been alright, hopefully the rest goes smoothly as well.

P.S. Sorry for the lack of links and pictures, these most recent posts have been from my phone, so it's much harder to do that kind of stuff. I do plan on posting a whole bunch of pictures as soon as I can though. (You can forget that last part now.)

Update! (Updated)

I ended up not having surgery this last go round in the hospital. I got blood transfusions to hopefully raise my blood levels to a point where they would be comfortable with surgery, but even with the transfusions, my blood levels were too low.

What ended up happening is my neurosurgeon, Dr. Alden, drained the pseudomeningocele and wrapped a very tight pressure dressing on it, in the hope that it would either heal itself, or stay manageable until I could have surgery.

That's most of the fluid from the first time they drained it.

Thats all the fluid from the second time they drained it: about a week later.

Again, I know this isn't a ton of information, I wrote this post on my phone as well. I've just been having really bad headaches because of this whole thing, and it's much easier to just grab my phone while I'm laying down and post something small. Also, as soon as I feel better, I'll update this and the previous post with more information and more about my actual experience.

Back In The Hospital (Update: Picture)

As I said in the last post, my second round of chemo was going pretty well. Everything went smoothly and I was able to go home on Wednesday.
I'm typing this on my phone right now, so I'm going to make a long story short (I'll update it soon). Right now I'm back in the hospital awaiting surgery. I'm going to have surgery to remove a fluid buildup on the back of my head. The technical name is pseudomeningocele.

Happy Valentine's Day!

Some more information: A pseudomeningocele is spinal fluid that has leaked from inside the brain and is  now stuck between the skull and the soft tissue outside the head (the skin plus some other stuff.)

Second Chemo in Progress!

I'm in the hospital for my second round of chemo right now. I am actually not feeling to horrible, and I feel a sudden small burst of energy, so I figured I'd use it to update my blog. So far I've had 4 days of the Cisplatin and Etoposide and today is my last day, and that will start in about an hour and a half. After that I have fluid replacement until about 3 in the afternoon tomorrow, then hopefully I can get out of here!

Here's to hoping day 5 goes as well as days 1-4!

An Opportunity To Help Out

My aunt Sue has created a website for those who want to help me and my family out. The website is a sign up for people to make us dinner. It is http://www.lotsahelpinghands.com/c/622321/login/ and you have to create an account on the website to be able to sign up.
My grandmother suggested putting a link to it on my blog so more people would know about it, and I thought that was a good idea. Thanks to Sue and thanks to all of you who have/ will sign up!

What's Coming Up

I'm just going to do a quick post about what's happening in terms of my treatment in the next few days.

On Wednesday and Thursday, the 3rd and 4th of February, I have to do a second round of stem-cell harvesting. The doctors weren't able to get as many stem cells as they needed, so they have to get some more so they have enough to successfully complete the latter part of the treatment (see my earlier post). The doctors weren't concerned with the fact that they weren't able to get enough cells during the first harvest. Me having had chemotherapy and radiation from the first tumor means that my body already produces less stem cells than the average person, so the doctors weren't surprised that I needed to have a second harvest. In total, the doctors want to have at least 2 million stem cells, and they got 1.35 million from the first harvest, so they should have enough after this second harvest.

On Friday, the 5th of February, I start my second round of regular dose chemotherapy. As with my first round, I'm going to be in the hospital for the whole duration so that they can monitor me. Because I had a reaction to the Ifosfamide from the first round and they don't want to use it anymore, I am going to be getting a new combination of medicines. As opposed to the Ifosfamide, Carboplatin, and Etoposide I received last time, this time I'm getting Cisplatin and Etoposide. Cisplatin is a related drug to Carboplatin, it is just a little more aggressive, and thus a little more toxic. So the side effects of the Cisplatin will probably be similar to the side effects of Carboplatin, just a little worse. The nasty long term side effects that Cisplatin is infamous for (hearing loss, kidney problems) occur in patients who have multiple rounds of treatment with it, I'm just having one, so no one is too worried about that. Also, to prevent the chemo from sitting in my kidneys, I'm going to have to have a lot of fluid replacement, which conflicts with me taking my medication for my Diabetes Insipidus, so I'll probably be in a similar situation to the last round of chemo where I have to have a catheter just so I don't have to get up to pee every hour.
I'm going to be receiving the chemo over the course of 5 days, so I'll be in the hospital at least through Tuesday, but hopefully everything goes smoothly and I can leave soon after that. I'll try and post some kind of update as soon as I can afterwards. I'm prepared for it, and I'm going to make sure they keep me full of anti-nausea medicine, keep my fingers crossed and hope for the best. Wish me luck!

Platelets and Waiting

It has been a while since I've updated the blog, mostly because there hasn't been too much going on recently from a medical stand point. This is most definitely a good thing. Since my last blog post I've had a few routine visits to the doctor and two platelet transfusions, nothing too out of the ordinary. Other than that I've been enjoying relaxing at home. I have been feeling much better and my energy level is significantly higher than it has been; overall I don't feel that bad.
Before I talk about what's coming up, I'll talk a little about what's happened since the last post. I had two platelet transfusions: one on the 21st of January, the other on the 26th. It is a pretty routine procedure after having chemotherapy. One side effect of chemotherapy is that it lowers your blood counts. It suppresses the body's ability to make blood cells such as red/white blood cells and platelets. Luckily, if the levels of red blood cells or platelets drop too low, the patient can receive a transfusion to boost them back up (white blood cells can't be transfused, thus the whole stem cell rescue thing).
My platelet levels came back pretty low from the blood tests I had done, so I had to come in Thursday the 21st for a platelet transfusion. The process isn't that bad: I had to have an IV hooked up to my PICC line and then just wait for about an hour and a half for all the platelets to go in. The fluid that goes in is pure platelets so it doesn't even look like blood, it looks kind of like beige orange juice. If I have another platelet transfusion I'll have the foresight to take a picture.
The first platelet transfusion went fine, but when my blood was tested a few days later, my platelet level was still low, so I had to come in on Tuesday the 26th for another transfusion. This one went much the same, until I was about 70% done, when I started having an allergic reaction to the platelets. All of a sudden, I noticed my asthma was acting up and I was starting to have a little trouble breathing. I told the nurse and used my inhaler, which helped with the breathing. A few minutes later, my eyes started to itch, and a few minutes after that my ears started to itch. Apparently having allergic reactions to blood products is fairly common, and the nurses were prepared to deal with it really quickly. Immediately after I told them I was having breathing problems they stopped the transfusion, and within minutes they were able to give me some Benadryl. Because the Benadryl was through IV, it started to take effect almost immediately, and I noticed the itching going away. The asthma problems that I was having didn't completely go away, so because I had already received most of the platelets, I was done with platelets for the day.

During the transfusion I was visited by my neurosurgeon, Dr. Alden, in regards to a squishy area on my head around the incision that I had noticed in the past few days. He inspected it and told us it was a small build-up of fluid that could be a side effect of the surgery. Sometimes the seal that they create is not perfect, or gets shifted around, so fluid can leak out and settle under the skin, like it did with me. It felt like a little squishy pillow on the back of my head. It didn't hurt and wasn't tender to touch, so he wasn't concerned about it being an infection, but just to make sure everything was good, he scheduled me for a quick MRI after my transfusion. On my MRI orders, they referred to the fluid build-up as a "boggy mass." To keep the "boggy mass" down, Dr. Alden suggested keeping pressure on it by wrapping an ace bandage around my head, or wearing a tight hat. Keeping pressure on it would speed up the reabsorption process. Wearing an ace bandage on my head made me look like the stereotypical head injury patient, like someone out of the three stooges.
After the transfusion was finished, I had to wait for the MRI, but because I had had the allergic reaction to the platelets, I had missed the initially appointed time. Because of this I had to wait about two hours for a spot to open up in the MRI schedule, so I could have a 5 minute long scan. I ended up being at the hospital for the better part of the day, which was pretty annoying.

So that's what has been going on since the last post: a little bit of adventure, but mostly I've just been recovering and relaxing at home, and overall not feeling too bad.