Well, hello!

Some of you know me a little, and some of you have no freaking clue who I am! That’s ok. I will still update you anyhow, lol.

I fell off the face of the earth this summer. The main contributing factor to that would be the prednisone. onc actually got me up to 70mg/day at one point. according to one of my nurses, that is a “very very very high dose”. I will tell you, those who don’t know, prednisone is a hell of a drug and wears you down like NOTHING!

I have had rage like a madman - screaming and screaming and screaming. i have gained 55 pounds. retained a LOT of water.

and that’s all just from the prednisone.

the chemo in general has created a lot of problems for me. constant state of, not what I would call chemobrain, but mental issues. the concept of time is still a huge problem. it’s quite lacking. my memory, which used to be impeccable, is gone. long term is mostly ok, but short term is shot. Some concepts are really hard for me to grasp. It’s sometimes hard to differentiate the truth from untruth, or real from fake, etc. I was looking at a website earlier and couldn’t tell if the website was a joke or real. I will sometimes have moments of grandeur, and sometimes my judgment falters and I can’t appropriately realistically judge a situation. ie, a really STUPID idea, that will NEVER amount to any accomplishment seems like the best idea ever.

neuropathy is bad. still today. i have gone through severe tremors, numbness, and my latest: falling. my legs will sometimes not support me and just give out…out of nowhere. I will be walking perfectly, no problems, and then down I will go. The last fall wound me up in the ER and still unable to walk completely 5 days later. (This was this past Saturday)

I have also gotten sick this week. We are trying to keep it from going to pneumonia. Severe wheezing. Cold/sinus/lung symptoms. I am on two inhalers, and my third type of antibiotic this week. If I am not better by tomorrow, I get to add another cycle of chemo, and will not be able to ave chemo tomorrow. (Been at the chemo thing since May 5th. It will be 5 months this Sunday.)

But here is the thing.

I can whine, I can complain, I can moan, and b*tch, about all of the above, but I won’t. I don’t feel that I can - fairly, as about a month ago my onc told me that, at that point, I was in partial remission. After next Friday (my last day of my 14-day straight chemo cycle) I will have another PET/CT and granted everything is okay, I will move to radiation. 3 months ahead of schedule.

Everyone…I am alive. And through everyone’s support, everyone’ prayers, modern-day medicine, and the will to survive…I am alive. I can’t say I would have had this outlook a month ago. Hell, I was probably too angry from the prednisone to know the difference, but now, looking at everything, I know - all of the above things, no matter how horrid, and how hard, it was worth it. It gave me more time to raise my children, more time to live. More time to learn how to live.

Please be with me tomorrow and pray, if you’re the praying type, that he will let me finish my chemo this next week, so that I can be done with chemo and not be too sick to have to do it again.

And to all of you going through this yourself - hang in there. It is hard, but the end is more than greater than the means!

I will close with a little quote of my own:
The true feat isn’t escaping death, rather, learning how to live.

Well, I’ve mentioned the neuropathy thing in the past.  Quite a few times I know.  I think I have also mentioned that has caused me to fall the past couple weeks.  It comes out of nowhere, and my legs just turn to jello.  They just melt beneath me.  Well, I guess my neuropathy decided to kick in again this morning.  Out of nowhere, was doing JUST DANDY, when my legs gave, then I fell off the curb, then down to the asphalt.  Bad thing is, the parking lot was not nice and clean, all pitted with rocks and gravel everywhere.  Was quite bad.  I couldn’t even get up for a couple minutes.  It hurt so badly.  I just layed there on the ground unable to get up.  The “adult lady” at the Y eventually helped me up and I cried hysterically all the way home. 

I was thinking that my foot and hand were broken, and my knee was all torn up and bleeding pretty badly.  I made it home and got my mom, called the oncologist on call to let them know what was going on, and asked if there was anything specific I needed to let the ER doc know, especially because I’m on so many restrictions with my chemo meds.

I made it to the ER.  I called ahead and they met me at the car with a wheelchair.  Couldn’t walk on my foot, still can’t.  They got me in for xray pretty quickly.  Did my left foot and my left hand.  They gave me some percocet.  I told him I had my oxycodone with me, but he said not to worry.  He didn’t want me to have to use my “personal stash”.  Aww, that was nice.

The Xrays were negative.  Still don’t understand though, why I can’t walk on my foot or apply any pressure on my hand.  He did clean up my knee, it’s still bleeding, but there was no way to stitch it up.  He cleaned it up, omg, it hurt soooo badly.  He used one of those brush/sponge things they use to scrub up for surgery.  I remember when I was doing my nursing clinicals, I LOVED using those, they felt so good scrubbing up, and the bristles felt SO good.  YEAH, BUT NOT WHEN YOU’RE SCRUBBING THE HELL OUT OF AN OPEN FREAKING WOUND.  UGH!  Yeah, it’s REALLY sore right now.  If you enlarge the picture, you can see the bristles, yes, he was scrubbing the crap out of my knee with the bristles too.  AND NOT LIGHTLY!  This is what my knee looks like.  It’s not pretty, I promise.  It still hurts like crap.  I just don’t understand why it’s my LEFT foot and my LEFT hand, but I managed to get my RIGHT knee.  Make some sense out of that one for me.  lol.  Leave it to me to be complicated, right?

So, a quick update from my appointment with Dr. Clark yesterday.  He confirmed that this will most likely be my last cycle of chemo.  After this I will have another Pulmonary Function Test and a heart test, probably an echocardiogram, and if they check out then I will go see Dr. Bush, the radiation oncologist (he is head of the department) and I will get going for radiation.  Yeeeeeehaw!

And then I got a little ticked at him.  He happened to mention that he had given me more prednisone the whole time than I needed.  WHAT?!  OMG.  I started to get so angry.  But then he redeemed himself.  He told me that I didn’t need to take it this cycle.  Yeeeeeehaw!  So.  That means I am DONE with the prednisone.  I was in SUCH a good mood yesterday, as I am sure you can imagine!

Anyhow.  So that about wraps up all the news for now.  I need to lay down, my body is hurting badly.  I will keep in touch. 

Thank you for reading.

Most of the chemo (which I think is mostly prednisone) effects have finally worn off.  I think by Saturday I was pretty much back to normal.  Lord, it took a week and a day.  Friday I was still feeling it, but by Saturday I was good to go.  Sunday I was able to go out and do some running around, and did ok.

But just think - I only have 4 days to go and I start it all over again. I’m still fat.  But have lost a couple pounds.  You can tell my face isn’t “quite” as swollen as it was even last week, and definitely not as bad as the week before.  My feet are still getting swollen though, and my fingers are still numb.  Dale (of tuckerthechow.typepad.com), fellow twitter, and a survivor, mentioned in a comment on my post before the dream post, that her feet still have numbness and bother her, even afterward.  As bad as my neuropathy has been, I can imagine that I may be in the same boat.  It is somewhat bothersome, but something I guess I can learn to live with.  My big thing is the falling.  My legs, during the last part of chemo, just crumbled beneath me and I fell about 3 or 4 times.  They still give a little bit, but now I’m usually able to catch myself and restep to counteract the “wanting to fall” thing.

I’m just looking forward to the prospect that this might be my last round of chemo.  I pray, forever.

I’m kinda nervous about the radiation.  Watch me OD on the magic mouthwash - it has lidocaine and you can swish and swallow.  Supposed to help with the esophageal pain and throat pain that I will get with radiation.  Throat pain is one thing I CANNOT stand.  Lord, you think I complain about the prednisone, lol, we’ll see what happens then.

Is there such a thing as chemo-crankiness?  I know that prednisone can cause outrage, etc.  We’ve all seen it in me when I post when I’m on it, I know.  But even still, now that all the chemo has worn off, I’m just a sour biotch.  People are aggravating me to no end.  I have no patience, I’m rude, I’m quick to correct you, and good God, don’t rub me the wrong way, because I will go off.  This generally isn’t like me.  I mean - people do bother me, “stupid people”, and always have, but I’ve learned how to be tactful about it.  These days, I just have absolutely no problem telling you how badly you’re pissing me off.  I hope it wears off, I really don’t like being like that.  Just seems I can’t tolerate it.  Ugh.

So, I do want to take a minute and do a special thank you.  A couple months ago, I mentioned Ron (sockrataz.wordpress.com), who is part of a “Hike for Discovery” team.  They hile and raise money for the Leukemia and Lymphoma Society.  I had mentioned how honored I was that he had attached a ribbon with my name on it (along with others) and their team had hiked in my honor.  Well I guess Sat, September 13th, they had a big to-do, and they had prayer flags waving in the wind.  Here is mine. :)  I got to share it with his Uncle Jay, who unfortunately lost his battle with prostate cancer this past June.  (wow, Ron, I didn’t realize, I am so sorry to hear that.)  Ron apologized for me having to “share a flag”, but I am even more honored!  Truly an amazing team, their Hike For Discovery Team.  Perhaps next year I can make a guest appearance and help them with their efforts.  Knowing me though, I’ll wimp out after about a mile!!

I died the tips of my hair black.  It’s been awhile since I’ve done anything with my hair.  I used to color it all the time.  I kinda stopped as I was getting sicker, and well, at the beginning of treatment it was kinda pointless to spend money on coloring something that was potentially about to fall out.  Speaking of which.  My wig planned worked.  I am known for having the worst luck ever.  Call it bad karma for my past life, or maybe I broke about 5 mirrors as a kid, like all in the same day, and those 7 years each added up.  I don’t know.  But I was hoping that if I spent the money on the wig (wasn’t entirely cheap) that, as my bad luck would have it, the money would be wasted and I wouldn’t need it.  Well the plan worked.  I’m convinced that is what saved my hair through all this.  I stared the luck-biotch in the face, whooped out a can of reverse psychology and I still have my hair.  And if I am the ONLY one that understood that analogy, it’s ok.  Like I said, I think most of the chemo has worn off.  Not all of it.  I still have a little bit of that chemobrain!

Anyhow.  I need to try to get some sleep.  Left all my meds at work today, which equates to no tempazepam.  I will probably be up all night, so I have to start trying early.  I will post again soon.  This posting thing is kinda nice.

(What will I do with My Lymphoma Story when I’m all done?  It makes me sad.)

Night, kiddos.

I was given a couple days to live.  They were able to give me some sort of something that would keep me strong enough the last couple days to not “feel the effects” of dying, but ultimately regardless of what happened, taking this stuff would guarantee that I wouldn’t make it past these couple days, it would destroy my body beyond compare.

I made it around to see everyone, for some reason it was my quest to make sure everyone got to see me.  I felt like it was some sort of responsibility of mine.

I wore a simple pair of blue jeans and a white v-neck shirt.  I was skinny again.

I was reaching my time - it was about time for me to go.  I was with my mom and my Grandma Jean in some white boxy 4-dr from the 80s.  For some reason we were speeding down Riverside Drive in Dayton, Ohio, toward downtown. Grandma Jean was driving somewhat erratically while blaring some Beatles song on the radio.  I could hear her and my mom sing, but for some reason you could only hear the music through the back speakers - not the vocals and it was clouded.  The sound was very clouded.  I remember wondering if she knew that the back speakers didn’t broadcast the vocals.  I figured probably not, as she is always in the front seat driving, never in the back.

I looked out the back window, hearing sirens, and saw an ambulance rush to where my house was - they were looking for me, it was my time.  Maybe I was trying to escape them.

Cut to a room with a lot of people with cots on the floor.  Almost what you would see for a relief area after a natural disaster.  I was going to lie down on the cot.  I was afraid to sleep, but couldn’t avoid the sleep any longer.  My body seemed to be doing good, and I regretted taking that medicine - as maybe I had a chance, but since I took that medicine to ease the dying, I was sure to die anyhow.

I was scared and trying to fight the sleep, but couldn’t.  I was so tired, and everyone was encouraging me to sleep, knowing that I wouldn’t wake up from it.  The last thing I remember thinking was, “Please, God, let me wake up.” and drifted off.

And then I woke up in real life.  God, I’m so frickin’ scared.

Quick Notes (In absolutely NO particular order):

• I have BAD neuropathy.  It’s hard to walk.  Both hands are completely numb, except for a very sharp pin feeling when pressure is applied.  (Typing this is extremely uncomfortable and difficult)
• I now weigh WELL over 180 pounds.
• Chemo, with my increased dosages was sheer hell.
• I am on day 4 of my chemo break (hallelujiah).
• I am working hard (and not accomplishing much) starting my own business.
• I went to the doctor today because I feel like crap and am huge as far as water retention goes.  (Urine analysis, blood culture, cbc w/ diff, CMP, chest xray and ultrasound of my legs.  Wednesday I have an Echocardiogram.
• NONE of my clothes fit.  I popped the buttons off my last pair of pants today.  Still trying to figure out what I will do at work tomorrow.
• I have a PET/CT after my next cycle of chemo in about 3 weeks - if all is well I graduate to radiation therapy and get to get the hell off this prednisone.
• I’m not so chemobrained or chemostunted anymore.  I’m just an outright raging lunatic.  I get VERY angry VERY easily.
• I am not very social anymore.  Don’t talk to anyone or really don’t care to.  (Please don’t take this personally, it’s the meds - make me not want to be very talkative, and then if I am I just scream at you.)  I’m just a very not nice person all around.  I would really hate me if I weren’t me.
• My 2nd opinion went great.  Said Dr. Clark was on the right track with this God-Forsaken chemo regimen.
• I have a lot of fun web projects I want to work on - but I need to finish my “business thing” first.  God, I hope I get that up and running in the next couple of days, it’s taken a week too long.

This past chemo cycle I ate a lot.  Look at this yummy double cheeseburger with heavy everything!  Mmmmm…  And then yesterday, lunch was 2 pork chops with the rest of the plate filled up with mashed potatos and gravy.  Mmmmm…  Friday night at IHOP I ate 3 pancakes, 3 eggs, hasbrowns, shrimp and french fries and a T-Bone steak.  Mmmmm…  Yeah, I really need to start not eating.

I am retaining enough water to make my body rival the Stay-Puft Marshamallow Man.  Don’t You LOVE the picture above?  And yes, I’m sorry.  The smile is fake.  How hot am I?  Sigh.

Ok, I have to go for now.  Again, please don’t take the not-socializing thing personally.  It’s just really hard for me right now.  I will be in touch again soon.

Take a look of these comparison pictures.  The end of June versus today.  Makes me sick.

I EFFING HATE CANCER!

So, updates:

• I got my 2nd opinion.  I will write about that on another post.
• I am on my 6th day of chemo this round.  I owe you two Chemo Chronicles now.
• I have gotten it in my head that I am going to make it rich on the Internet, and have my own Internet business.  Based on this plan, I aim to be able to quit my job within a year.  (I think it’s the chemobrain.  I can know this is stupid thinking, but somehow it makes sense…)

There is so much to write about.  I haven’t updated in so long.  Even Terrence told me that I have become a slacker and that I haven’t done anything on here.  (And he says he doesn’t read my site.  He reads it more than he lets on - which kinda makes me happy in some ways.)

So, I will just start you at my appointment with Dr. Clark last Friday.  He “officially” gave me my PET/CT results.  I got nothing printed, and nothing to read.  But he said that it was looking “much” better.  I asked if it was looking where he wanted it - he just said “much better”.  Ok, then.

He redosed me on my chemo meds.  Yup, the procarbazine….Aaaaaaaaaaand… *drum roll please* the prednisone.  Sigh.  He raised me from 3 procarbazine/day to 3 one day and 4 the next.  (Nice, give the chick with chemobrain a mixed dose like that and expect her to follow it.  Right.)  Yes, I made a chart that has the date, the day, and what dose I’m supposed to take.  (Hey, T, see, I already made one chart of my chemo, want me to Xerox it for you so you can keep track too?!  :P)

And the prednisone.  He took me from 60 mg/day to 70mg/day.  I guess that’s not too bad, but seeing as how 60 is supposedly a lot in the first place.  I told my mom as soon as I found out the new dosage.  She replied, “Does Dr. Clark have a death wish on his head or what?!”.  Yeah, I got pretty damned unbearable there.  I think that is what ultimately led to my bedroom-seclusion.  I was sick of yelling at everyone all the time, and sick of being a biotch so here I am in my bedroom, and it’s kinda stuck I guess.  I came out last Thursday night for about an hour when Terrence came over.  I came out last night to make and eat dinner, and I came out to eat dinner tonight (about 10 minutes), then promptly back in my room.  I can’t full you though, this weekend I wasn’t home that much, but had I been, I assure you - I would have been in my room.

This weekend after chemo I was actually doing quite well.  Friday night went well, I think.  (I’m trying to remember exactly.)  I felt okay.  Saturday though…Oh, Saturday.  I went to the flea market early in the morning.  We left about 7 or 7:30 I think.  We were out for about 4-5 hours.  I actually held up okay.  Near the end I was quite worn out, and I took a decent nap.

Then Sunday.  (God, I don’t know what’s up with me lately - I’m just not in a “smart” frame of mind I guess.)  Sunday we decided to travel to Cuba, New Mexico.  I have only seen from a little south of Albuquerque up to the outer rim of Santa Fe.  I have lived here 3 and a half years now and I have only traveled in a radius of about 100 miles (north and south).  How pathetic.  So, yeah.  I decided this would be a GOOD idea to travel.  It actually wasn’t as bad as it could have been, a blessing in disguise probably.  We got up to Cuba and went on the back roads through the mountains.  ABSOLUTELY BEAUTIFUL.  Ok, so yeah.  The back roads through the mountains that aren’t even paved, just packed dirt because they have been traveled too much.  Well, it was pouring, we got rained out.  So, after about an hour of trying we decided to head back into town.  We decided that since we were headed back torward Albuquerque that we would try to stop by Jemez.  That is supposed to be beautiful too, I’ve wanted to go since I moved here.  The rain eased up a little, so we thought we’d give it a shot.  We turned off the main state road and took a road that runs through the Jemez Reservation.  And, of course, it starts pouring again.

I had to say goodbye to the hopes of fishing and relaxing, enjoying the beautiful mountain air and sitting and reading my 500 Inc. magazine under a nice shady tree.  It’s frickin New Mexico.  The one day out of the year it rains is the day I actually get to travel.  Figures.

I came home from that, passed out of course from the 7 hours in the car (whew!) and have been in my room since, except for work, of course, and the dinner events I mentioned earlier.

So, since I managed to weave my way through Tangent City and back twice, back to the doctor’s appointment.  My original treatment plan was to be on chemo until December or January.  Well, kids, it looks like I have until next Friday, have my two weeks off then start my last 14 days.  Hallelujiah!  Yup, that’s what he thinks.  He thinks one more cycle after this.  (Remember, 1 cycle is 14 days, with injections on days 1 and 8 and oral chemo meds the full 14 days.)  After my next cycle of chemo, he is going to give me another PET/CT (YAY! BERRY YUM!) and then if that is all good, he is going to get me geared up for radiation.  YAY!  Sigh.

I will then see a radiation oncologist, Dr. Bush.  He is the head of the radiation team there at the cancer center, so I have awesome confidence in him, but I am not sure if that means I won’t see Dr. Clark anymore.  I don’t know.  Interesting thought I just thought of.  Radiation is supposed to last anywhere from 2-3 weeks, and the original intent was to give me 3,000 rads.  Not that that has any bearing on me, I have no clue what it means, but okay.  It’s supposed to be every day during the duration, Monday - Friday.  Yay, gas!

I was talking to Terrence about it and I am somewhat nervous to start radiation.  People have told me that it will be harder on me than chemo.  I guess there is supposed to be a lot of burning of the skin, and since it is in my chest, I will get a lot of throat and esophageal pain.  Yay, throat pain!  There is supposed to be “Magic Mouthwash” though that will help.  I guess it’s like Listerine with Lidocaine in it.  Well, I hope it works, because thus far Lidocaine hasn’t done jack for me.  It’s supposed to help with the pain.  We’ll see.

The prednisone increase has actually not affected me badly at all.  I expected to be terrible, but I haven’t been.  I think I have been more mild-mannered since I’ve started the higher dose than when I was on my 14 day hiatus.  Figure that one.  It’s seemed to have gone to extreme though.  I am most not caring about anything.  Yup, just don’t care.  For example - I have an extra car out there, one that doesn’t run.  They put a boot on it today.  Oh well.  lol, really don’t care.  They’re cracking down on us at work, and yup, really just don’t care.  I am WAY in the negative in my bank account - guess what?!  Yup, just don’t care.  I’m really trying to, but somehow, I really don’t give a damn about anything.  At least I’m not angry, right?

So, I guess I will wrap it up now.  Will try to catch up on the chemo chronicles tomorrow before I have chemo again Friday.  And I will promise to at least TRY to update a little more often.  Until then, peace.

Oh, and the weight thing. Yeah. I weighed in at 168 the other day. I haven’t checked back since. Screw it. I’m just going to wear the one pair of pants I have everyday. Yay.

PROCEDURE: PET/CT SCAN

CLINICAL HISTORY: Hodgkin disease.

TECHNIQUE: PET/CT scan was performed following intravenous injection of 7 mCi of F-18 FDG following at least four hours of fasting. Low-dose CT scan with contrast was performed prior to PET scanning from the skull bases to the mid-thighs, and the images were then fused and viewed in multiple projections on a workstation.

COMPARISON: Correlation is made with a prior CT scan which was performed at X-Ray Associates dated 04/08/08.

FINDINGS:

NECK:

There is a lymph node in the right lower neck, supraclavicular region, which measures 1.9 x 1.6 cm, just lateral to the right thyroid lobe, and this accumulates FDG activity, maximum SUV 8.3.

CHEST:

There are multiple sites of abnormal activity. There is a large mediastinal mass, which occupies primarily the anterior mediastinum, but also extends to involve the middle and the posterior mediastinum, and this is very FDG-avid, maximum SUV 12.0.

There are also multiple large pulmonary masses and nodules, and these also accumulate intense activity, with most of the SUV activity levels in the 8-10 SUV range.

There is an enlarged right cardiophrenic lymph node, measuring approximately 4.0 cm x 1.8 cm, maximum SUV 9.2.

There is also moderate adenopathy in the region of the internal mammary lymph node chain bilaterally, the most obvious measuring approximately 2.0 cm x 1.6 on image #26, maximum SUV 6.8.

Enlarged lymph node in the right anterior chest wall measures 2.8 x 1.7 cm, just posterior to the right pectoralis minor muscle, maximum SUV 11.3.

There is a closely adjacent 1.0 cm x 1.0-cm lymph node in the right axilla, with borderline activity (maximum SUV 2.4).

No definite abnormal activity in the left axilla.

ABDOMEN:

No definite abnormal activity.

PELVIS:

There are small lymph nodes in the region of the right groin, with a 1.0 cm x 0.9 cm lymph node in the right inguinal region, which has borderline activity with maximum SUV of 2.5. There is also a 1.3 cm x 0.9 cm lymph node just medial to the right external iliac artery, image #104, with moderate activity of maximum SUV 3.0.

IMPRESSION:

Multiple sites of abnormal activity, with the bulk of intense activity being in the mediastinum and in the lungs bilaterally, as well as adenopathy involving the right supraclavicular region, right anterior chest wall, right cardiophrenic angle, and internal mammary lymph node chains.

Small residual lymph node noted in the right pelvis and inguinal region, with relatively mild activity.

PROCEDURE: CT SCAN OF THE NECK, CHEST, ABDOMEN, AND PELVIS WITH CONTRAST

TECHNIQUE: CT scan of the neck, chest, abdomen, and pelvis was performed following intravenous and oral contrast.

COMPARISON: Made to a prior scan which included the chest, abdomen, and pelvis performed at X-Ray Associates dated 04/08/08.

FINDINGS:

NECK:

There is a mildly prominent lymph node in the right posterior triangle, image #23 measuring 0.9 cm x 0.6 cm. Although there were some minimal activity associated with this lymph node, with a maximum SUV of 2.1, it is below the threshold of 2.5

More inferiorly, there is a lymph node in the right supraclavicular region, lateral to the right thyroid lobe, which has decreased in size, now measuring 1.9 cm x 1.6 cm, where previously, it had measured 2.8 cm x 2.0 cm. This is intensely active by PET.

CHEST CT:

There is a large mediastinal mass, which involves the anterior and middle mediastinum, with soft tissue density extending into the posterior mediastinum. This mass is somewhat difficult to measure, but on image #46, where the bulk of the tumor is, it measures approximately 7.3 cm x 14.1 cm in AP and transverse dimensions, which represents a modest decrease in size when compared to measurements at the same level where it was 14.8 cm x 7.8 cm.

Large bilateral pulmonary masses are also present, ranging in size from a few millimeters to the largest at the left lower lobe measuring 5.6 cm x 6.0 cm. These were also intensely positive by PET. Overall, there has been a modest decrease in size of these pulmonary masses. (Largest in the left lower lobe on the prior CT scan of 04/08/08, 0.6 x 6.3 cm).

There is a right cardiophrenic lymph node, maximum diameter 4.0 cm x 1.8 cm, which is unchanged.

Internal mammary adenopathy also does not appear significantly changed, largest lymph node in the left internal mammary lymph node chain measures 2.0 cm x 1.6 cm. This is also positive by PET.

Enlarged lymph node in the right anterior chest wall posterior to the pectoralis minor muscle, measures 2.8 cm x 1.7 cm, and was FDG positive. This does not appear significantly changed.

Largest lymph node in the right axilla measures 10 mm, and was mildly FDG positive.

Posterior mediastinal soft tissue is difficult to measure, but does appear to overall, have decreased slightly in size from prior exam.

There are small bilateral pleural effusions, and these do not appear to have changed significantly.

ABDOMINAL CT:

Spleen is mildly enlarged. This is unchanged.

A tiny 2-mm lesion in the anterior aspect of the medial left hepatic lobe is unchanged and probably represents a tiny cyst.

Ill-defined low attenuation just anterior to the right portal vein on image #49 has a similar appearance to the prior exam and did not accumulate FDG, may represent a small focus of fatty infiltration.

Pancreas, kidneys, and adrenal glands as well as the gallbladder and bile ducts are all normal.

No ascites. No retroperitoneal or mesenteric adenopathy.

The bowel appears normal.

PELVIS:

I believe that the enlarged lymph node in the right inguinal region has been removed since the prior exam, as there is some soft tissue density here suggesting postoperative change.

There is a 1.0 cm x 1.0 cm lymph node remaining in the right inguinal region, which was mildly FDG positive. Additionally, somewhat more posterior to this at the external iliac lymph node chain, is a slightly larger lymph node measuring 1.3 cm x 0.9 cm, which also was mild to moderately FDG positive.

Otherwise, no pelvic masses or additional sites of adenopathy.

IMPRESSION:

When compared to the prior exam, there has been a modest decrease in size of the very large mediastinal mass and mediastinal adenopathy, as well as modest decrease in size of multiple bilateral pulmonary masses and nodules.

Adenopathy involving the right supraclavicular region, right anterior chest wall, internal mammary lymph node chains, and right cardiophrenic angle are also noted and stable.

Small bilateral pleural effusion.

Small residual lymph nodes in the right inguinal region/external iliac lymph node chain, decreased.

Radiologist: Linda Casey, MD

LC/vhe/cc

D: 05/14/2008
T: 05/14/2008
Job #: 14533

Well?  What do you think?!?!?!?

I had to start preparing for the PET last night. I was not allowed to have any carbs, no exercise, and nothing to eat or drink after midnight. Its after 11 am now and I am starving. I also had to take my first of three bottles of bairum last night at 10. I asked for the berry smoothie flavor this time, which led me to the clever name of not so berry yum. Get it? Barium/berry yum. Right. Anyhow. I also had to choke down a bottle at 9:10, an hour before my appt that was supposed to start at 10:10. Operative word being ’supposed’.

I was due for another port flush and labs before my PET, but that kinda screwed things up. My chemo nurse, Lynette, took one look at my port and said, “Nope, not gonna access that!”. Since my port flush on Monday (I actually videotaped it, just need to finish editing it and post it for you) my port has been very red, warm, itchy and sore. She asked why I hadn’t called about it. I figured that, its happened before, it’s just irritated, eh, whatever. Didn’t want to bother with calling the cancer center, yet once again, for yet another problem. Well, I guess I should have because now, after my PET, I have to go back and be seen by one of Dr. Clark’s PAs to look at it. Plus they needed to do crap loads of more lab work. She said since she didn’t want to use my port she would have to draw from my arm. I asked her just to put in an IV because they were going to do it for the PET anyhow, and if she did it I could have the cold spray to numb it, plus there is no reason to be stuck 8 times. Just put in one IV and just do everything for that.

After sitting there a bit in the infusion room, they decided to have me do my PET since I was becoming increasingly late for it. So, where I was going to see the PA before, has now been moved to after. And I’m going to be even MORE late to work. I was hoping to be done with my pet by noon and go in, but now I won’t even start my PET til noon. I would say a good 20-40 minutes for the scan itself, and them the PA visit. Aye! Aggravating. So I’m sittint in this room now, oblivious to what time it is because I have been typing this on my Crackberry. I think I’m going to put the phone down and rest. Sleep sounds good right now. Until later - I will keep ya posted.

-Brandi

I almost wish I had Chemobrain again. When I had chemobrain I wasn’t feeling like I did this go around. I always feel like crap for complaining too, because I really do have it easier, I guess, then most people that endure cancer and chemo. But I still have side-effects and problems. But then I run into that mental moral dilemma about how I shouldn’t be complaining, or even thinking about anything I am feeling or going through because other people have it so much worse off. Sometimes I even feel guilty for tell all of you about what I’m going through here, because I shouldn’t be bringing attention to my “simple case”.

I’m guessing what was neuropathy was terrible. I mentioned in my last post that I thought it would have gone away by Sunday night, but it is still here and flaring up bigger than ever. I don’t have what I would necessarily call pain, but it hurts.  I was talking to Terrence earlier tonight, and trying to describe to him that, the inside core of my feet and hands feel numb, and then the outer layer, like, on the top of my skin, feels like an ever revolving layer of ants.  Ants that are biting and tingling and crawling and moving around my extremities in waves.  And then, the whole extremity has an aura of heat and pain, like a dull throbbing.  (At least it’s not stabbing and shooting pain like a couple days ago!)  My 3rd and 4th fingers on my right hand are completely numb at the tip.  I have also been having skin pain on my upper outer arms.  Weird.

I was so looking forward to last Friday being Day 14.  I gathered the girls and my mom around to have a big “hoorah” as I took my last chemo pills for 2 weeks.  Yeah, that was anticlimatic as can be.  I swallowed them then though, “Well, um…ok?”.  All day yesterday, I waited for the moment to come where I realized there was some big revelation because I hadn’t taken my pills in however many hours, and then awoke this morning hoping for the same big moment.  It never came.  I’m sitting here now, propped up in bed, writing this on my laptop, thinking, “Hmm.  Ok.”.  So, now I have 12 days, and I’m just going to start it all over again.  Nothing exciting there.  The last time I got to stop my pills I was way more excited, and the weekend seemed to go so much better.  This weekend I am still tired, and can’t sleep, still having problems with my arms and feet and the Prednisone-Bitchiness is lingering.

All I did yesterday was scream.  At the girls, at my mom, at whomever else decided to come my way.  Terrence stopped by a couple times, he managed to escape the wrath.  What makes him so lucky?  He didn’t say much, maybe that’s what it was.  And the fact that I was trying to explain some webstuff to him.  Maybe he just did a good job at keeping me occupied in the short amount of time he was here each time.  And the second time he stopped by was to show me the trophy he had one - he won the Mr. Rugby Award with his rugby club.  It was his moment, I couldn’t yell at him while he was here!  (BTW, Congrats, Terrence!)

But yeah, I was on the rampage yesterday.  I can’t even say if my argument was justified or not.  It was so stupid that I don’t even remember what I was raging about.  Today the screaming has stopped, thank God.  But I have still been moody.  Moody is ok.  Moody is just me being irritable, I can generally handle that.  It’s the fits and the rage that get to me…  And everyone else.

I have my labs tomorrow, because I had to reschedule them on Friday because my co-worker wasn’t in the office, so I had to stay there.  I will update if anything exciting or important, but I anticipate them being within the normal limits.  I also have my PET-CT Scan this Friday on the 22nd.  We will see how that goes.  I’m crossing my fingers.  I’m not looking foward to the nasty 2 huge JUGS of barium I have to drink, but the PET will be a very good thing to have at this point to gauge my progress.  I haven’t had one since May 12.

Today I managed to scrounge up 8 neighborhood kids to hang out at my house.  Trust me, it wasn’t an intentional thing.  Eight additional kids to my two.  Yes, do the math, that made 10.  They were all actually quite good though.  Didn’t trash my house, no fighting.  They all got along pretty good.  I think it was a nice change of pace for my girls.  Number 1, being the center of attention, of course, and getting to show off their hostessing skills, but also just a change in the home environment.  I escaped to my room for the very long 2 hours, but I have to say for the most part, I am very proud of ALL of the kids, mine as well as the neighborhood kids.  We really do have some good kids around here.  I managed to bug them long enough to grab a picture.  I hope that my kids are able to look upon it fondly in the future and remember this moment.  The kids they would “hang” with.  The kids they would “kick it” with.  The kids that were their friends.

So, I think that is enough stuff to bore you with now.  I did take another video of me trembling and tremoring.  You can see it below.  I took it Saturday morning about 6am.  About 8 hours post-last-chemo-dose.  And no, the tremors are not exaggerated.  Anyhow.  Enjoy.  Until next time - be good.