More Than My Share

Really didn't mean to keep you in suspense!

noreply@blogger.com (Lisa P.) — Thu, 19 Jul 2007 22:54:00 +0000

I just got really tired after treatment yesterday (plus was annoyed b/c I got sick *three times* due to anxiety - UGH!)...

But there's news...

And it's good...

According to my doctor, the scans show that "it's gone"... I have some trouble believing it although I am still happy... I guess it's the doubter in me that says "wait a minute, how can that be?"

Technically, there are still some visible lymph nodes although they have all decreased in size considerably. Many are listed in the report as having "FDG uptake reduced to that of the background," and since FDG is the radioactve stuff they give me that "lights up" wherever there are cancer cells, I am assuming that means there's no more of it present than you'd see on a person without cancer cells in that area.

I think the gist of it is that I wish my doctor had been more descriptive, had possibly showed me the actual images of my scan, or something similar. As it was, it just seemed almost... surreal.

Not that I won't be celebrating once my stomach is back to normal, of course!

What's next -- three more chemos instead of five (thank goodness!) a scan in three months, and then scans every three months for a year. Beyond that, I don't know, but am not worrying that far ahead.

Thanks for all the positive and supportive thoughts throughout this experience. :)

Still here...

noreply@blogger.com (Lisa P.) — Wed, 18 Jul 2007 02:21:00 +0000

Although as I told Catherine recently, I feel less like a blogger these days and more like someone who posts boring updates. *sigh* Maybe that will change eventually, or maybe it won't.

Tonight though, I will post another update.

Let's see... work is going ok, although I am much more tired than I thought I'd be. Sore, too; probably due to the fibromyalgia more so than anything lymphoma related. I am still not "settled in" to the new job, as most of the people in the department I'll be supporting are away on vacation (gotta love summer!) but I'm optimistic at this point that it'll be a good fit.

It's been a good distraction, too, from the fact that I should get results of my midpoint PET scans tomorrow. To say that I'm a bit nervous tonight would be a huge understatement; the results of this scan will let me know if the chemo is working, so I'm pretty focused on trying not to get my hopes up while at the same time praying that it'll be good news. G seems to think that everything will be ok but I have had that feeling one too many times in the past two years, only to be surprised by the rug being pulled out from underneath me. So needless to say, I am trying not to think about negative stuff but trying not to be too positive. How's that for confusing?

I will post tomorrow as soon as I know anything.

In short...

noreply@blogger.com (Lisa P.) — Tue, 03 Jul 2007 17:57:00 +0000

We had a good weekend.

We had a long talk about the TTC situation, which was a very good talk, even though there is no possibility of progress right now.

I'm feeling much older than my 37 years right now.

I'm not really cranky anymore, but not all that talkative either.

Treatment is on Thursday this week due to the holiday. Hooray for an extra day!

I start back to work Monday.

That's all for now.

Still cranky.

noreply@blogger.com (Lisa P.) — Wed, 27 Jun 2007 17:19:00 +0000

Thought it had passed but apparently not. We had a power outage Monday night through last night which I think contributed to it but I've also had some GI issues and have a raging headache today. What a good day to be seeing the counselor (about the anticipatory nausea thing) -- I told him on the phone the other day that while I'd had anxiety and depression issues in the past, now my outlook was pretty good. Nah.

(I would say it was PMS but I haven't had a period since May. Hopefully the "temporary menopause" thing isn't something that goes permanent. At least I am not having hot flashes.)

At least one semi-good thing (I think) has happened - work called and they have a position to bring me back into, with an increase in pay. (They'd better, is my attitude.) Only trouble is the start date... not sure when it will be yet. We're gov't subcontractors and as such are on their timeframe. So hopefully soon, but not immediately, I'll be going back to work.

Oh, and we're going on a little weekend trip this coming Saturday/Sunday. Hopefully my cranky will be out of the way by then.

Thanks again...

noreply@blogger.com (Lisa P.) — Fri, 22 Jun 2007 17:31:00 +0000

First, thanks for the comments letting me know it's ok to be moody. It's a good thing; Wednesday's treatment sucked (I got sick) and so I was extra moody for a few days. But today is Friday, the day I normally feel horrible and I'm feeling ok.

Also, big thanks to Catherine, Eve and KathyMc for the scarves that arrived via mail! I will need to add them to the fashion show once I get the upload process on our new computer figured out.

Moody

noreply@blogger.com (Lisa P.) — Fri, 15 Jun 2007 18:05:00 +0000

I've been moody the past few days. I didn't talk about it when it first happened but now I'm moody and don't care, so the story with my job is that when I told them my chemo schedule they came back a few days later and asked me to take a 30-day unpaid medical leave. Told me they would hold my job for me (or some job), and to call in a month to talk about coming back.

That was the day before my first chemo (almost six weeks ago). They are still dangling me. I'm *supposed* to hear from them again by early next week, but am not holding my breath.

(I won't get into the "is that legal, can they do that" debate that I've already gone over several times in my head, with G, and with two online lawyer friends including one who comments here, wink wink. I made a decision not to fight it even though I may have grounds, simply because it's not open and shut.)

Anyway, I am able to collect un.employment so I have been, but being at home and doing nothing most of the time really isn't as nice as it may sound. I'm going stir crazy, and feeling brain dead. It hasn't been fun and it hasn't done much for my mood, which was already starting to wear based on the fact that despite everyone's assessment of my spirit as being so up, you only hear the stuff I feel like posting. I haven't felt as positive lately, which may be from some nausea or may be from missing my hair or may be just because I haven't really reacted to all this shit since being diagnosed. I kept saying "at least we know what we're up against now, it's so much better" but truthfully, it really isn't. It sucks. (I feel better just admitting that.)

So I'll admit that I'm moody and then go back into silence for a few days. Maybe my mood will improve. We'll see.

Dreams

noreply@blogger.com (Lisa P.) — Wed, 13 Jun 2007 15:00:00 +0000

Last night I had the second dream about little girls that I've had in the past few weeks.

The first was a week or so ago. I was aware only that I was riding in a car, and there was a child on my lap. (Yes, I know it's against the carseat regulations... don't think that was the point of it.) The child was adorable and I was making her laugh with silly songs and raspberries on her ear. I then became aware that her mother was the person driving the car. Then I woke up.

Last night's was longer. I remember traveling alone to a large hotel-type facility and being shown to a room where I was to sleep in a sleeping bag on the floor. It was very late at night and I was tired, so I fell asleep. In the morning, I had to walk down a very long staircase that wound around through all of the other rooms, which were filled with girls of varying ages. The oldest girls slept on the higher floors and as I got towards the bottom I saw the girls get younger and younger until I passed through a room with infants. I don't remember feeling anything odd about this place until it was time to go to breakfast, because when I got to the dining room everyone else there was a family (all of the little girls were with their parents) but I was still dining alone.

I'm not even safe in my sleep sometimes.

Fashion show!

noreply@blogger.com (Lisa P.) — Mon, 11 Jun 2007 14:59:00 +0000

As promised, and delayed only while I learned to use Flickr, here is a hat fashion show for you guys!

http://www.flickr.com/photos/8814124@N03/sets/72157600339428790/

Shanna, thanks for clarifying who you were; that's who I thought but my brain lately seems to be all "chemobrained" on me. (I can blame it on that even if it's really just me being all 'duh') No worries about the head comment, I really, truly do have a large head and have made fun of it myself for a long while.
---------------------------------------------

UPDATE:
I wish I could adequately describe for you the color red my face got when I saw the package I got today from Catherine. *eep*... It's a pink ballcap that says "S.exy" on it. Twice!! *face reddens*

I'm laughing out loud at that one Catherine and trying to figure out where exactly I will wear it first. :-D

More nice stuff

noreply@blogger.com (Lisa P.) — Sun, 10 Jun 2007 03:47:00 +0000

A butterfly scarf, two "froggie" flannels and a garden type hat arrived the other day from Shanna (who I'm not sure I know? but thank you!!) Shanna, interesting comment you make about hoping I "don't have a gigantic head" -- ironically my head is on the large side (really! I've measured it) but so far everything seems to be working for me.

I promise I will get my hubby to take some pictures tomorrow!

And a scarf!!

noreply@blogger.com (Lisa P.) — Thu, 07 Jun 2007 21:22:00 +0000

Kristin sent the most beautiful and silky scarf!!

I am seriously going to have to make a fashion show album for all these lovely stuff. You guys really are terrific. :)

And then there were three...

noreply@blogger.com (Lisa P.) — Tue, 05 Jun 2007 15:22:00 +0000

A lovely colorwashed cap from Broolyn arrived yesterday, courtesy of Cat and Mini Miao!

I am so tickled you guys. Pics as soon as I can get hubby to take some!

De tels beaux chapeaux!

noreply@blogger.com (Lisa P.) — Tue, 29 May 2007 19:48:00 +0000

That's French (according to Babelfish!) for "Such beautiful hats!" :)

Imagine my surprise when I opened my mailbox today to find a package from Paris containing deus *very* beaux chapeaux, "one in black with bling bling trimmings for those evenings out, and one in casual denim for everyday." (Artblog, I liked your words so much I borrowed them.) ;-)

Apparently this was an organized hatting. :) Thanks so much!!

Back on the upswing

noreply@blogger.com (Lisa P.) — Tue, 29 May 2007 03:38:00 +0000

I'm getting used to these "down for the count" Fridays post treatment, although I still can't say that I like them AT. ALL. They are the most annoying day in the world, and I feel kind of like the walking wounded, going from uncomfortable position to uncomfortable position. I don't get any relief from any of the drugs they give me or any of those that I take OTC such as GasX or Tums. And occasionally the bloated feeling gives way to something else (nausea and its wretched sidekick, vomiting) and I *feel* like a cancer patient.

But luckily those days are limited. I can just look like one; more of my hair is falling out now... but the physical side effects last me only that one day (well, perhaps part of the next). I don't know how I got to be so lucky; even though I don't feel lucky on Fridays I know it could be much, much worse. I hear stories of people who go through chemo and feel horrible most of the time, and so the fact that I have one bad day and two possible "eh" days out of fourteen possible days is really the best outcome I could think for all of this.

(Edited to add: I'm past my Friday for this cycle, Hallelujah! Next treatment is not until 6/6.)

I wonder if it's going to change, of course. I've read some Hodgkin's patients' stories that say that around the middle of treatment things got really bad in terms of fatigue (or pain or nausea or what have you) but I am holding out hope that things will remain status quo and I will make it through my "one day", one cycle at a time.

I'm a quarter of the way done, BTW. After the next one I'll be a third of the way done, and after that one I will need to figure out the complex fraction (haha - math not being my strong suit). We are planning a short weekend trip right before Independence Day. I am thinking ahead towards doing the "Light the Night" walk for lymphoma research, held in October. Once treatment is over. Over. Wow. Can I really think like that??

Our next big milestone, aside from the various fractions counted down with each chemo, is my next big scan. Friday, July 13.

I'm hoping it'll be my lucky day.

Seen on the back of a minivan...

noreply@blogger.com (Lisa P.) — Thu, 24 May 2007 00:52:00 +0000

"Having kids is like being pecked to death by ducks."

Oh yeah?? GIVE THEM BACK THEN and let those of us who want them give it a try!!

Grrrrrr.

Hair today, gone tomorrow

noreply@blogger.com (Lisa P.) — Tue, 15 May 2007 23:32:00 +0000

It's gone!
And I'm ok! I didn't cry once!

My wig, which previously looked odd due to my hair being all lumpy under the wig liner, looks natural! (Picture at left is the wig!)

And my head does not look funny with next-to-no hair!

Pictures to follow when I get them uploaded.

Updated - with pictures! If you disagree about my head, don't tell me. LOL.

The one I've been waiting for...

noreply@blogger.com (Lisa P.) — Sun, 13 May 2007 16:43:00 +0000

The one side effect, that is.

My hair is falling out.

In clumps in the shower.

Large amounts in my comb.

It's time to shave it off -- my stylist is getting a call as soon as the shop opens. I can't do this this way.

I probably won't go today, since we're going to Mother's Day dinner at my in-laws. But as soon as possible.

re:OPK's - for Msfizita...

noreply@blogger.com (Lisa P.) — Sat, 12 May 2007 22:20:00 +0000

Can you email me at the blog address shown on my profile?

Second verse, not quite the same as the first

noreply@blogger.com (Lisa P.) — Thu, 10 May 2007 18:55:00 +0000

It's only Thursday but it's been a long week.

I'd been feeling pretty good over the weekend and was thinking that this week wouldn't be too rough. I was mistaken.

Tuesday I had a portacath put into my upper chest (near my collarbone) which is where they'll give the chemo from now on. It's easier than trying to find a vein (and failing multiple times, causing lots of sticks - ouch.) That was an outpatient procedure - I had twilight sleep and felt fine afterwards. However, I found out from G. that the doctor tried to insert it on the right side (the normal side) and couldn't get it into the vein!! So he had to stop trying over there and re-attempt on the left side. Which obviously worked, but made me more tender on both sides. I used an icepack Tuesday night and took the V.icodin they gave me - no sense suffering!!

Yesterday I had chemo #2. I had some nausea after I got home which I think was because they didn't give me Ativan in my IV before starting the drugs this time, which they did the first time. I will ask about that for next time. Luckily the nausea was fairly short lived, although I didn't have much of an appetite as a result. I did make a point of eating though -- I had to get a Procrit shot since my hemoglobin and hematocrit were low, and I have to make sure I increase my protein intake to something like 50g per day. So I'm going with the small meals frequently approach.

Hopefully I will have either the same side effects or less this time around. Will update more later in the week.

OPK's anyone?

noreply@blogger.com (Lisa P.) — Sat, 05 May 2007 20:32:00 +0000

A while back, K. was kind enough to make available a ginormous pack of OPKs (the internet kind, 24 to be precise) to a random commenter since she no longer needed them. I happened to be that person.

They don't expire till March 2008, but I will likely not have a need to use them before then. So I'm going to use the pay it forward concept and make them available to anyone who can use them. Comment by Wednesday and I'll pick someone at random if there's more than one interested party.
------------------------------------------
Update: since my reading audience isn't entirely in the OPK frame of mind, I will also be ok with leaving a comment if you know of someone who might need them - i.e., if you can pass them along to someone.

Holding back the years

noreply@blogger.com (Lisa P.) — Thu, 03 May 2007 18:10:00 +0000

I turned 37 yesterday.

It was an ok birthday. I relaxed all day -- haven't mentioned to the blog community but I am "on holiday" of sorts for a month. It's a long story and I don't feel like blogging about it but nevertheless I am at home. Watched "Clueless". Made myself a rum drink and sat outside enjoying the blue skies. G took me to dinner at a nice seafood restaurant and then we came home and watched L.ost. Not a bad birthday day, really.

It's the age thing that bothers me. Of course.

I've read a mixed bag of recommendations. One states that you should wait to try to get pregnant after chemo until you've had three normal periods in three consecutive months. Another states "most doctors will advise women that it is best to wait for 2 years after chemotherapy treatment before becoming pregnant." Because of the possibility of relapse, mainly. This same site also states that temporary infertility (lack of periods) caused by chemo can take 6 months to a year after chemotherapy is finished to resolve. A final paper I found on the fertilehope website claims thatall chemotherapy patients need to wait at least six months after treatment due to the potential for damaged eggs due to the toxicity of the chemo drugs.

I'm in calendar hell again. It's more than just me, too; there has to be some reason why G and I could get pregnant in '04 and '05 and then couldn't in '06. Is the biological clock factor causing both of us issues? Will a delay of at least a year seal our fertility fate?

We talked a very little bit about this at dinner last night. I spoke about how nice it would be if we could still do IVF, given the insurance coverage we have for that versus the cost of adoption which we probably can't afford. G said "well how much does it cost?" I admitted I didn't know, and that I was basing it on the cost that multiple IVF's would cost us without the insurance. Not the best scientific method but it's all I had. G then said "it would be nicer if we didn't need to do anything."

We changed the subject after that.

I'm not trying to make adoption out to be something bad or something we don't want to do. It may turn out that we could afford it after all. Or maybe the IVF would work. Or some medical miracle could happen and we could get pregnant all on our own again (throws back head and laughs manically)... yeah, I know. Wishful thinking.

I just hate these reminders that come via dates on a calendar.

Ok, so it kicked back...

noreply@blogger.com (Lisa P.) — Sat, 28 Apr 2007 16:54:00 +0000

After all of my excitement over how well I was handling my first treatment, it turns out that I just wasn't waiting long enough.

Friday was pretty horrible. I had aches all over which could have been from the Neulasta shot I got on Thursday (said to cause bone pain) or could have been from the dacarbazine, which includes flulike symptoms among its side effects. I also felt like I had a huge bubble in my stomach all day, and no matter what I ate or how I stretched out, nothing took it away. It was pretty miserable.

Oh... and my hair hurts. My scalp is extremely tender, which I understand from Googling is part of the hair loss process. I haven't lost any yet, but the tenderness is making me very aware that it's coming. I decided not to blow-dry my hair at all today because I don't want to speed the process along.

Fatigue was my last but most present symptom. I went out briefly to get my driver's license picture taken -- with my own hair -- and found it to be an effort to lift my purse onto my shoulder and walk for more than short distances without resting.

Thankfully, I'm feeling better today. I just have to remind myself that this is serious business and that I should enjoy these good moments while I have them.

Chemo Adventures, Part 1

noreply@blogger.com (Lisa P.) — Thu, 26 Apr 2007 21:30:00 +0000

One down, eleven to go. I'm going to call this one "kicked in the butt" since I'm really feeling pretty good overall, a little tiredness today but then again I *was* out at the mall. :) In addition to taking my anti nausea meds I am making sure to eat small regular meals all day to avoid feeling sick.

The morning we went I was pretty calm, surprisingly. I sat around a lot when we first got there, partially to get "training" (basically explaining everything and all the possible side effects). Then I got an IV -- they had to stick me twice unfortunately as one vein "rolled" -- and waited while they sent blood off for testing. That will happen every time so they make sure my blood counts are ok to do the chemo. I was able to eat lunch while waiting and bring entertainment (they have DVD players to borrow if I want!)

After some delays they finally got the chemo upstairs. I took anti nausea drugs first and something for anxiety (woohoo!) Three of my four drugs are "pushes" meaning they come in a big syringe and the nurse slowly pushes it into the IV. A couple of them stung a little but it wasn't bad. The first two were done then I got one hung on a drip. That one took 30 minutes. Then I got another small push and was done.

I am getting a port installed in my chest (under the skin) prior to the next session - it will alleviate stinging in the veins and the problems with multiple sticks. I meet with the surgeon on Monday and then they'll do the procedure the day before my next treatment (May 8)

I'm feeling very optimistic. I know there's still the potential for fatigue or other problems but I'm taking it one step at a time.

Hoping it's a trend that I kick more of them than they do of me!

Surprises I actually like!

noreply@blogger.com (Lisa P.) — Fri, 20 Apr 2007 23:19:00 +0000

When I got the mail today, I stared at the padded envelope in my hand and thought "I didn't order anything..."

But look!
A package courtesy of Catherine with the sweetest show of support... a strength necklace.

This, for the person who cried on the way home from learning her diagnosis while listening to Christina A.guilera sing "Fighter" on the radio... "I am a fighter... I ain't gonna stop..." Ah well. I'll get there. I know there will be many many tears between now and the point in the future when I finish treatment and (hopefully) get clear scans, and this will be one more thing that will help me get through it.

It's perfect Catherine. Many many hugs and thanks.

And of course, we need one of me wearing it, with my new short do:

It worked!

noreply@blogger.com (Lisa P.) — Thu, 19 Apr 2007 20:01:00 +0000

All the positive thoughts helped - my heart is fine and I'm cleared to do whatever treatment the oncologist wants to do.

My first chemo appointment is Wednesday at 10:30.

I am not sure I know how to handle the feeling of the other shoe not dropping, but believe me, I'll take it.

What happens while you're making other plans...

noreply@blogger.com (Lisa P.) — Thu, 19 Apr 2007 11:35:00 +0000

Life has gone on, though not as usual.

I had my tests and scans Friday through Tuesday. I laughed when they turned on the radio during my PET scan (out of courtesy since it was a half hour) and it was playing"Walking on Sunshine."

During my bone marrow biopsy, the material kept falling off the needle before the PA could retract it. We never got any but had to stop because the pain was getting harder to deal with.

I developed a fever yesterday morning after feeling pretty good from my cold for the past few days. We went into the office on the on-call nurse's advice. My doctor's nurse was like "why did you come in?." But I'm glad I did, as they did a chest x-ray to make sure I didn't have pneumonia (I don't) and prescribed me some antibiotics for bronchitis.

Oh, and then the PA told me my PET scan results were back.

We waited with tension in our throats as she went to print them off.

The oncologist came back in with them. While they can't say for sure until the bone marrow aspirate sample is back, at this point I am stage III nodular sclerosing Hodgkin's. I have enlarged lymph nodes in my neck, chest and abdomen, though thankfully not any of my organs, or my pelvis. Praying that the bone marrow will be clear so I don't jump to stage IV. Now, even with the higher stages Hodgkin's is still thought to be very treatable, but there are some prognostic indicators that go down somewhat with the higher stages. I'm not thinking about those right now.

Also, I found out that I will be seeing a cardiologist (today) because something didn't look the way they wanted it to on my MUGA (heart) scan. If there is any question about my heart function I will not be doing the standard chemo regimen (called ABVD) but rather an older one called MOPP. Which has a greater incidence of side effects and possible infertility.

I will update later if I know anything but if you read this this morning and can send a thought or prayer my way, I would appreciate it.