Friday, August 1, 2008

Second Chapter: Radioactive

So, i'm back on the treatment track and wanted to catch you guys up on the past few weeks. After chemo was fantastic. My mush brain recovered fairly quickly and my energy was back within the first couple weeks. there's nothing new about it . . . i hated chemo. it was harsh on my body and energy, and I felt like I couldn't even concentrate on my thoughts. i dreaded going in every monday. the days were so long and the treatments, while i was lucky to experience no really extreme physical reactions, gave me a complete distaste for iv's. I can still taste the flavor of the medications and feel them corsing through my veins. It certainly doesn't help that my arms are still pretty worked from the adventure.

Now, i'm in the second week of my radiation treatment. The treatment is fairly simple although the ramifications seem to be more intense than my chemo. Radiation is a dangerous game. Not like any of this has been a walk in the park for my long term health (from the PET scans, which is basically injecting you with nuclear fluid, to the nitrogen gas drug (nitrogen mustard) they gave me in chemo, which is the same thing they used on war protesters to subdue them during the 60's), but radiation is like adding on 10x's the risk. I was told that my thyroid has a 50% chance of failing, and i'm at greater risk for other types of cancer's, blood clots, heart attacks, and burns! great. let's just skip it! but, the routine is fairly simple. i go down to stanford 5 times a week and have a mask (that was made especially for me) fitted on me to hold my head down on this table as I lay still and let a machine circle me, shooting me with radiation for no more than 1 minute per blast. it's relatively painless although i may get a sore throat (which i'm already starting to feel and feels more like a closing up of my throat with pressure) and feel a little run down, in addition to a little nausea and some pain and shortness of breath in my chest. ok. i realize i made that sound pretty simple, but it is when compared to Chemo! anyway, three more weeks to go! i cannot wait!

I've already been back at work for 2.5 weeks and enjoy doing something different with my afternoons than sitting around the house. take care for now everyone! I'll be in touch soon.

Tuesday, July 1, 2008

finished! good riddens

My Chemo Journey has ended! I had my last session yesterday. We had a big posse of people along for the ride. My father in law, roger, came up from Redlands, CA, as well as my parents from Saint Louis. Then of course, there was Brett and I. The chemo went pretty quickly. Unfortunately, the rest of the day took a downturn. one of the drugs I was given cause fevers in patients. I hadn't be getting them, because another drug, i just stopped taking (by doc instructions) suppressed the reaction in me. So, basically, now that I stopped taking the supressor drug, and got my chemo drug, I was totally in fever land. my temp reached 103.4 around 5pm. it was awful. We were really close to going to the emergency room, but the on call doc's told us to just take benedryl and tylenol. it worked and after a whole day of sleeping i'm somewhat back to normal. I hope that's the last of it. thank god it's over!!!!

now, three weeks until radiation. I promise i'll write more later. I'm heading out to enjoy the day with the family. thank you all again!

Thursday, June 12, 2008

9th Chemo Down!

9th week down!! 3 to go!
Last week I had a trip planned to go back to my home town of Saint Louis. It was so nice to be back. I had a great time. My sister and brother in law came in to visit from KC and all my girlfriends from high school had come back with their kids (some of whom I had yet to meet). It had been a long time (years) since i had been back to STL and since all of my girlfriends were back together again. Such a good time.

The week I went home, the doctors mentioned that I had a low red blood count, so I was anemic. I had been really tired, which would have explained something. In general, i have become more tired as the days pass. Chemo is really weakening my body. I had a shot for the red counts last week, and managed to get my count up this past week, but i'm still pretty tired. Got a bit of a cold this week, which has added to it. Overall though, I'm fantastic! I'm so excited that I get to be done with this thing (at least the chemo) in 3 weeks!

Thursday, May 29, 2008

Hooray!

Good news! The results have come back from my PET scan! It looks like the chemo is working! The nurse said that my reaction to the drugs gave the best possible results that I could receive. There is no evidence of metabolically active disease anymore and my lymph nodes have reduced in size to practically nothing in my neck and around 8mm in my chest! that is way smaller than the mass they found originally! I feel extremely fortunate and excited!

The bad part of the news is that I have to continue with all my treatment. But, they just want to make sure that they finish it out and that they reduce the risk of it coming back in the future. So, there you have it.

Will write more soon!

Tuesday, May 20, 2008

Just a Test

Just testing google groups.

Monday, May 19, 2008

Time Standing Still



































My sixth treatment is done! so, i guess this means that I'm halfway through. . .with the chemo, at least. Man, it sure does feel like I've been out of touch with the world for much longer than that. Every minute of my life now is about living in the moment and I find that makes my days go by so much slower than planning every second out. It's a good way to live. although, for the planner that I am, it is hard to curb my innate desire to 'do' all that I can. this is something that I've been struggling with. I have to constantly remind myself that it is about me getting better. less beating myself up because i didn't do everything I wanted, more reading and stretching and relaxing. it's surprising how hard it is in our high paced society to actually NOT do anything. I'm working on it though. It's my life lesson.

I am so ready for treatments to be over with. I was told this week that I will have to continue every week with the neupogen shot because my body just keeps getting low white blood counts. They say it's just my thing. Some people have bad side effects, or infections, and I just have low white counts from the chemo. sucks. Good news will hopefully be coming my way soon though. I have a pet scan coming up. I have had this scan before. It pretty much determines where the cancer is in my body and how active it is. This particular scan is scheduled for this Wednesday and will show the progress of the treatment. I will not receive the results until I go in for my seventh chemo session next Tuesday. Grueling, but i'm used to the waiting at this point. The doctor's are super positive. They are fairly sure the results will be good. My cough that I had (caused by the lymph nodes being SO swollen that they pushed against my esophagus) is all but gone, and my swollen lymph nodes in my neck are now flat, which means that they are also not swollen. Great signs! So, even though this was my halfway point, I will be looking forward to next week as the real middle road to see how well the progress of the drugs is going.

I have been feeling pretty good. I'm a lot more worn down than I was those first couple weeks. trying to remain active though. My weeks consist of a little yoga, walks, a run if I'm up for it, and tons of things in between. My sister came into town last week. It was so nice to have her here. And like some of my friends have gotten to experience, she went with me to a chemo treatment. I imagine it's super interesting for those who have not ever done anything like this before. And like all, I'm sure she was pretty surprised to see how nice the facility is that I go to. Stanford keeps you happy for sure. I'll have to snap a picture of the foyer with a grand piano automatically playing all day and concierge desk to direct you to your clinic. Ritzy! Our visit was nice. I'm lucky to have such a great support system.

So, here are some photos to keep you entertained. enjoy. I'm putting one up that my friend Melissa took of me, one of me and the sis, and one of me and brett on our 3 year anniversary weekend in Big Sur (my head was not quite shaved at this point, but brett has shaved his in commemoration of mine falling out!

Wednesday, May 7, 2008

Shave it Down!

Well, the fourth week has been somewhat uneventful. I suppose that's not too bad a thing? Brett and I had a great weekend out of town celebrating our 3 year anniversary. It was so nice to be away from that TV! My friend Melissa took me to this week's chemo session and it flew by. The doctor's appointment was quick and because of that they let me get chemo 3 hours early! What a relief, sometimes I feel like I'm there all day (which I'm normally am)! Also, a big thanks goes out to a few more peops; to Rachel and Dave for an amazing meal last night! and a friend, John brought over some great lasagne on Monday night from him and his wife Helen. And a big thanks to Joan for all the beautiful hats she gave me from her collection! I will send along photos in the next few days. They are fabulous! and much needed.

Brett and I shaved off the rest of the hair after chemo on Monday. It was time to say goodbye to the rest of the hair! It was a bit sad at first, but what's sadder, pulling chunks out of your hair and looking sickly by having patchy head or actually sanding it down to stubble and rockin the do?! I'm for rocking the sinade o'connor look. How many times do you get to do that in a lifetime? (Hopefully once for me). Even though I will be hitting that mohawk again I'm not sure I'm the shaved head type of girl!

Will write more very soon! and send along some pics of my hair.

Wednesday, April 30, 2008

Three Down

Hi everyone! So, three weeks of chemo is up! I managed to raise my white blood counts up quite a bit, so they were able to give me my chemo that I was supposed to get last week. I actually had to go in for 2 days this week. I have to do that three times throughtout all these treatments. Only three weeks in and I'm definitely beginning to feel the effects of how arduous and overwhelming this process is and will be. It sometimes amazes me that I have cancer and that I have all these toxin's in my body that are supposed to (and will) fix me! Unbelievable! It is pretty unsettling.

On another note, Brett and I just rented this new movie (I put a link on my site) called Crazy Sexy Cancer. It's a great documentary of a woman who has been diagnosed with an incurable slow going cancer. If any of you are interested, it's pretty inspirational. I will also be posting more sites to my blog as I find them (in the top right corner of the blog). Check any of them out, they may provide some great insight. I've found that it's quite tempting to get on-line and scour the internet looking for anything out there related to this illness and not all of it is good for you to hear. I think we all fall into the internet research trap. It's really easy to do. But, the internet is also filled with a lot of mis-information from people who are only giving their own opinions or experience or information that has not been updated in years. Be careful out there.

A few more things. If any of you wish to be emailed everytime I update my blog, you can scoll down to the bottom of this blog and click the link that says, subscribe to.

Also, thank you all for all you well-wishes through all of this. I know that there are a lot of people that I haven't had the chance to get back to, but just know that your thoughts are with me and I appreciate my support group and the love that I receive from you.

Sunday, April 27, 2008

Aka: Get Over It!!


So, this is my short little Sunday afternoon blog. Everything is going great. Just hoping tomorrow turns out to be a successful day of chemo after this last week. It was a set back, but hopefully not for long. I've had some friends sweeping by to see me, which has been oh so nice, and another lovely meal from our friend Miss Chris on Wednesday. Last Tuesday the food came via Andy and Maryam. Tasty treats and great company. . . keeps my days rollin by. So, this week, my hair began to fall out in droves. Thank god I said good-bye to the longer hair a few months ago. Brett and I just decided to take it all the way! so, here's a pic for you of my partially shaved head, all except the mohawks brett and I have decided to keep for the night! Maybe we'll go hit up a bowling alley!

Tuesday, April 22, 2008

Disappointment

Along with every day comes a new interesting set of challenges and obstacles. Some are as simple as whether or not I feel like working out on any given day, but other obstacles; like finding out that my chemo needs to be postponed for a week because my white blood counts are really low; are major disappointments. It means so many things to me; one more week added onto my chemo cycle's, more drugs to take to boost my white counts (drugs which make my bones ache), and the reality that this thing is bigger than my willpower.

So, my white counts are low. This is a result of the intense chemo my body has had to deal with over the past two weeks and a setback, only in that I will postpone my treatment by a week. The doctor's told me this has nothing to do with my outcome. that's a relief. It's still a bit unsettling. The drug they are giving me is a shot called Neupogen that will increase the production of white blood cells in my system. If this low of a blood count happens in about 30% of their patients, why not just make the shot part of the standard protocal? It makes you wonder. Especially when it postpones treatment. The side effects are bone pain. It feels like someone's crushing my bones. But, at least I know it's working, right? Not to mention I've been getting somewhat ansy being at home. I've never been really good with keeping still and relaxing. I always have to be doing something. It's pretty hard to do, and even harder when you feel completely 100%! I feel great, but if I don't relax this week it might effect my treatment further.

So, this is one of the many disappointments that i must face, but i'll make the most of it and learn that I need to focus on my health and getting better. I mean, how often do you get to sit around in your pajamas all day and learn spanish (that's right, i have my lessons lined up) and ponder life. of course, if the doctor says it's ok, I'll be back and running and doing yoga in no time. For today?. . . you can catch me at home. Oh, and my cell phone minutes are back! so, feel free to call anytime!

Tuesday, April 15, 2008

Chemo Dos

Yesterday was my second day of chemo; this time with two completely different drugs than the last time. The reactions will be a bit different. We'll see what this week has in store. It certainly keeps my life interesting. I ended up making it to the beach on Sunday with a friend; much needed sun time. Although, by the end of the day, I realized why it was exactly that they told me to be careful in the sun. My skin is much more sensitive to the sun. ouch, but totally worth it.

My experience at chemo yesterday was much more at ease than my first time. My doctor's said that my blood counts were really good, and given that I didn't have any huge reactions to the drugs, they say that I'm accepting the drugs really well. I guess my body can handle a healthy dose of toxins (smile). I seriously only had one major problem, and that was my right arm (the one they injected me in last time) has become painful, but they say that should fade. Brett has been a great support and friend through all of this. He's pretty entertaining. And I have to say, I enjoy having a little man-slave for the day.

This experience has been a very visceral so far. I've been relying on my own intuition and physical well-being to know what this disease is doing to me. It's quite unnerving to not feel the actual effects of a deadly disease like cancer, but learning to really pay attention to yourself and understanding the awareness of your being is so much a part of how we fit into this world and are able to exist in it peacefully. I'm looking forward to reaching that place where I can swallow what comes at me and grow because of it.

thanks all for so much of the support! more pictures to come!

Friday, April 11, 2008

The White Rabbit


Well, i've made it to Day 5 after chemo. it's a total adventure anticipating all the nuances that my body is becoming accustomed to because of these drugs. For the first few days I was pretty tired. I figured out it was one of the drugs I was taking and cut back a bit. Take a gandor at these drugs. I am now officially a pill popper. I actually have been quite lucky so far, no major nausea. Yesterday I even had enough energy to get myself to the gym and get back on the treadmill to run for a good 30 minutes. it felt great! We had an amazing meal hand delivered to us from our friends amelia and ben on tuesday night after the chemo. What a relief not to cook.

As the days have passed by this week, i've still not yet become accustomed to not working. I'm trying to relax and veg and take advantage of being at home. But, every once in a while, the cancer realization creeps back in and I'm reminded how lucky I am to be in a place where I can be treated and loved so much. It certainly does make time stand still and put things into perspective.

Tuesday, April 8, 2008

The Day After


So, this is my first day after chemo. I feel a bit run down. nothing feels different to me. I think the sleeping pills are kicking my ass, cause i've been able to sleep, which i hear is a really good thing. This week they decided to give me dosages of half the cocktail of drugs: of all things to make me nauseas. luckily, they also give you tons of drugs to help you deal with that. I am feeling comfortable. I also decided to take a shot of a drug called Lupron. this drug will put my ovaries into sleep mode. it's just an extra precausion for me to preserve my fertility. no one is really clear that it works. the problem with any kind of fertility testing is that their just is no way to know who was fertile before all of this happens. since there is no time to test you, we just add it to the big list of unknowns that i'm about to experiment with. Some people choose to freeze their eggs. unfortunately for me, there was no time to do this. It is my choice in the long run whether or not to wait the 1-2 months it would take to harvest eggs, but during that time my bulky disease might have put me at more risk. right now it is about saving me first.

Sunday, some friends gathered at my house for a little send off party. check it out. i just want to thank everyone who was there. i am so blessed to have such a great crowd of people surrounding me through out all of this. wish all my friends and family could have been there.

Monday, April 7, 2008

Chemo Begins

So, today is the day that I go to my first Chemo treatment. I am a bit nervous, but have prepared as much as I can. i feel like i haven't had much time to prepare at all really as I've just heard from the doctors about treatment last wednesday, but I have no time to think. i just want to start. wish me luck.

Saturday, April 5, 2008

Welcome to Hodgkins

Hi everyone,
so, this is my first blog. welcome. sorry to bring you here under such saddening circumstances, but you know what? i don't have it so bad.

MARCH 7
So, i'll begin and end: for some of you this will be a reminder, or for others as a first trip on this road of discovery that I have found myself so quickly placed. almost 4 weeks ago to yesterday, i went to get a chest x-ray for a swollen lymph node, that I had found on my neck. I'll back up a tinny bit to describe what led me to the radiologist on this day. I had been to the doctor weeks before because I had a patch of dry skin above my collarbone; just a simple patch of itch skin, but with a tiny lump beneath it. The doctor gave me some meds and said that if the skin cleared, but the bump didn't go away, we'd do a chest x-ray.

So, on March 7 I drove myself to the radiologist and got my chest x-ray'd. no biggie, just routine. . .until I was told to go back to my doctor's office immediately to discuss the results. my stomach dropped. I'm sure you can all imagine what my nerves were doing at this time. I felt like a celebrity though, no wait, just walked right back into the doctor's room. I was told, from just this one radiology report, that they believed I had Lymphoma, quite possibly Hodgkins Disease. You know those moments in movies, where life stops and the antagonist's focus hones in on one detail and the rest of the screen becomes fuzzy? that was me. that was my experience. for the rest of the day i walked around feeling this very clear reality, with no care for what the rest of the world was doing; no care for the future or the past, but this moment of instant awareness. it was pretty unbelievable. i could say i was scared, which i was. . . but i also felt dumbfounded. what happens now? what happens tomorrow? how can life go on knowing that this is happening?

went on it has, at an extremeley slow slow pace, but moving along just as it has before, but with that awareness to guide me.

so, i went back to the doctor with my husband brett, just to hear the repeat and have him hear it so I wouldn't be the only one in this crazy dream. i needed proof that i wasn't still dreaming. i asked the doctor, is there a chance that this could be nothing at all? . . .probably not. i could hear the gravity now placed on brett's shoulder and not just my own anymore.

March 11
the next week i was scheduled in to go see an Ear Nose and Throat specialist to take a needle biopsy from the swollen lymph node.

more waiting. . .

March 18
The results are back, but inconclusive, it is most likely still Hodgkins Lymphoma. They scheduled me in for a full-on surgical biopsy to remove the lymph node from my neck.

March 24
i was a bit nervous this day. I've never had surgery and really have to be honest, hate hospitals. i asked to see my lymph node though. it was the size of a big jelly bean. this is all still so surreal.

March 28
I schedule my own PET scan. Positron Emission Tomography

a side note with all of this: What they don't tell you when you begin experiencing a cancer, is that you have now become your own doctor, you own decider. my doctor was great to me, when i needed her, but hadn't set up any scans for me, no blood work, nothing. the ENT doctor was equally as distances from me. I wasn't HIS regular patient, so why should he set anything up? at least that what it felt like to me. I felt like i was floating in between doctors, with no one to look out for me but myself. it was an awful awful feeling. who would give me my final results? if it hadn't been for my friend, who had been through the exact same thing as me, i might not have known what to do or how to handle it. A few things she told me:
1. if it is Hodgkin's, they will not be able to get results from a needle biopsy. which we already knew to be true, and. . .
2. if it is Hodgki'ns, you will need a PET scan
so, i set one up myself.

that same day my doctor called me up to tell me that the PET scan showed that the cancer was a fairly large mass in between my lungs. It isn't a tumor though, at this point they are just swollen lymph nodes in between my lungs, measuring 13cm in diameter. This is considered, what the doctor's call, bulky disease. it indicates that the mass of swollen nodes is almost a third the size of my chest. more critical than anything, because it's pushing against my esophagus (which is causing a slight cough) and could potentially push against my heart!
good news is that the disease is contained above my diaphragm which puts me at stage 11 Hodgkin's. once it goes below the diaphragm it becomes a bit more serious.

April Fool's!!
My results are in. I have Hodgkin's Disease, Nodular-sclerosing kind.
here are the stats. Hodgkin's Disease is a disease of the lymphatic system (your immune system in your body that fights off infection). The lymphatic system runs through your body like blood circulation - the tubes branch through all parts of the body like the arteries and veins, except that the lymphatic system carries a colourless liquid called 'lymph'. When lymph nodes are swollen they are most likely infected or trying t fight off infection. In this case, it's rather ironic that the thing it's trying to fight off is attacking just it. you might feel them in your neck when you get sick with a cold. not a big deal usually.

anyway, Hodgkin's accounts for a small percentage of patients afflicted with Lymphoma cancer (i've heard anywhere from 20-30% of Lymphoma patients). there are 5 types of Hodgkin's Lymphoma and around 25 types of Non-Hodgkin's Lymhpoma (NHL).

It's odd, but the final conclusion left me relieved. To actually know what i'm in for, to know what to fight for is a blessing. it's no longer an unknown. I am luckier than most to be able to be treated and live a normal life after all of this. They say that this type of cancer is treatable and often times curable by a 90% margin. so there is a lot of hope.

April 2
I have also gone ahead and set up my own appointments with oncologists long before this date. my friend who had the same disease put me in touch with her doctor down at Stanford and my friend's mom Gail, put me in touch with her doctors of oncology at UCSF and SFOA. I am lucky to be living here in such an amazingly advanced area in the United States, with access to some of the best hospitals and research centers in the world.

I've made my decision to be treated down at Stanford. They are world reknowned for their study and treatment of Hodgkins patients. it's almost a no-brainer.

I will have 12 weeks of chemo once a week. Every Monday. then, for weeks of Radiation. For any of you around here in the bay area, I would love to have people to take me to my chemo sessions. They say that I shouldn't drive myself.

So, a little more than 4 weeks to the day that I went in for that chest x-ray, and i'm starting treatment!