Monday, December 31, 2012

Happy new year!!

We are going out to dinner tonight. Yes OUT!!  I am so excited. I am doubling my nausea meds and going to enjoy myself.

I will be doing a countdown and a hair update soon..... Just a teaser. Now to go make sure my hair is all in place and I look nice.

Friday, December 28, 2012

Cumulative effects

They weren't lying - the effects of chemo are definitely cumulative. It's the day of chemo PAST. A day where in the past I would have been back to nearing 100%. Not last time. Or this time. I woke up in pain, all over, my jaw, my shoulders, my face (who knew you're face could hurt for no reason?), my legs, arms, urgh. I got up at 1pm, went for lunch, to work for a while and was back in bed by 630. Weak.

I've found accepting this new 'half' me really tough. Cancer is always synonymous with imagery of battles, warriors, strength. They make you think that if you're lying in bed feeling sorry for yourself and your aching body that you are somehow losing. Letting the cancer win. You start to feel like if you take those extra few hours sleep that you so clearly need and then hang about in bed for an hour after you wake up that you have lost your fighting attitude and you actually start to feel guilty. Like you're being a pushover, letting it get you and thus letting it win. Then, you start to feel guilty just for feeling sorry for yourself. Like you're being ungrateful for the fact that you're still even alive when so many aren't and cancer does nothing if not make you grateful right? Or guilty for moaning about the bad days rather than being thankful for the good. Guilty for letting those around you, who are already worried sick, see that it's beating you into submission, worrying them further. Guilty for those who have to pick up your slack. 

I get how crazy this is, I know you're reading this thinking that I must be mad to think that anyone would blame me for taking a few extra hours sleep and not pulling my weight in terms of duties but for some reason it's there. Nagging me, shut up, get up and keep going. I'm starting to think that this unreasonable guilt may be what keeps people going. I have the countdown..... less than a month until this whole thing is over. Whatever gets me there! 

Am I "real" yet

I would HAPPILY take the combination of achey, uncomfortable situations I described in the last posts. The pain has moved to my back and hips. One sleepless night, several painkillers and one desperate phone call begging them to furnish me with something stronger and I'm slightly better off. The nurse I spoke to said most women liken it to labor pain when it reaches your lower back and hips. I can tell you now if this is labor pain there will be epidurals in my future. I consider myself to have a fairly high pain threshold but this feels like I've been crushed by a truck and now someone is twisting screwdrivers in to the most painful points. I can't sit, I can't stand, I can't lie on my back, stomach or side. If I wasn't so determined not to make this ordeal any longer than it has to be I would definitely be refusing this drug again. To do so would cause no go. Just one more thing to add to the list of things I hate about cancer. (This list is growing, fast. Really need to get back to working on the list of things I like about cancer. Like, today, I was thinking of having a date night with Kyle. That's if I can kill the pain with super drugs of course.)

I have a good friend, who in an extremely unfair twist of fate, has been suffering real back pain for several years. I always sympathised, but I never understood. I know that now. I hope more than anything that she finds the cure she needs. I can't imagine having this pain with no end in sight.

Makes me think, once again, about how this experience might or might not change me. Will I be different having felt real pain, real fear? Surely there can be few fears greater then the fear of losing your life. Maybe the fear of losing a child. I don't think I'm going to come out the end of this thinking it was a blessing in disguise, or a lesson I'm glad to have learned like some cancer survivors experience. I think I'm going to put it down to what it was, a horrible thing that happened that I survived. It will definitely make me feel different, worse, uglier, fatter, balder, tired. I'll be proud though. And definitely relieved. And probably still scared - scared it's not over. Maybe it makes me a bit more real. All I've ever wanted from my life was experiences. Without them, good or bad, how can you say you've lived? There would be nothing worse than dying feeling like you never lived.

This reminds me of the Velveteen Rabbit.

“Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit.

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”

Thursday, December 27, 2012

Chemo #6

Blood drawn, I've been stabbed, sterilised, weighed and groped. Having a cup of tea and it's chemo time!

Good news:

1. I've lost a little weight... While on steroids. There is more bloating in my stomach area....but that should go away at the end. My doctor is more happy that I have not lost more.... I am not sure I agree.

2. My oncologist finished a conversation with 'you'll be fine'- a rare moment of hopeful sentiment which many people who have had a lot of interaction with medical professionals is on a par with spotting a pink toucan in the hospital coffee in terms of rareness.

3. The cause of my dead fingertips is not likely perminent neuropathy and should come back... And they don't need to change my dosage.

4. They can feel no lumps at all in my neck - no enlarged lymph nodes

5. There is no bad news, even rarer than the encouraging doc and the pink toucan combined.

A few hours from now I'll be 6 down and home for recovery. Today also makes 4 weeks to my final chemo - magic number 8.

Gotta run and call into the IRB so they will approve my study. 

Monday, December 24, 2012

To radiate or not....

The big radiation or no radiation question is weighing on us. As a researcher I am approaching this empirically. I know this is hard to understand if you are not wired this way. I need to know the evidence. Most of the studies on Hodgkin Lymphoma are out of Europe because of their ability to fill the studies easier than we can here in North America. additionally, I have been doing a lot of reading from an Oncologist from Standford named Dr. Richard Hoppe. He wrote the medical textbook - Hodgkin Lymphoma. My family will appreciate my gravitational pull to Stanford. According to him and other researchers - No radiation is generally for those patients with favorable Hodgkin's. I found out at my last appointment that I am officially considered favorable. To be unfavorable, you need to have at least one of the following (these qualifications vary quite a bit from program to program, but here's an example): 1. male (we always knew they were unfavorable) 2. Age greater than 45 3. Sed Rate without B symptoms OR >30 with B symptoms (I had no B symptoms) 4. Greater than or equal to 4 lymph node sites (I have 3 - neck, superclavicular, mediastinal) 5. 10 cm growth inside mediastinum (My largest growth inside the mediastinum is 6cm.) If I did not have radiation, I would have an 94% chance of FFP (FFP basically means that I won't have a Hodgkin Lymphoma relapse). If I did have radiation, I would have a 96% chance of FFP. Having radiation comes with long term risks. Mainly, heart disease, lung cancer and breast cancer ... breast cancer especially may increase to as high as 50 times more likely than the average person 20 years post treatment. It is less for narrow field radiation than broad, but they risks are still there. Lindsey... you're sounding like a lunatic ... why wouldn't you get radiation. ENTER ... the clean PET scan. In the last few years, doctors have started to use the early PET scan to help determine treatment. None of the favorable/unfavorable indicators can hold a candle to the early PET scan in determining whether or not a patient will or will not relapse. About 80% of patients have a clean early PET scan (actually it's 85% of favorable patients and 72% of unfavorable patients) and I am luckily one of the 85%. Well I did nit hane a full PET, but did have a clean CT. There are a whole bunch of studies that have just started or are ongoing regarding the early PET scan, but there aren't a lot of results yet. But the big issue is that emotional pull. If I don't radiate and it comes back will I regret it?? Now, you know .... you know all of it ... the dilemma ... the gamble. We have a few weeks to make the decision. We'll keep you posted.

Need to be positive

I realized the last post was way too negative. I am such a positive person, although reading this blog you may have a hard time believing it. I guess this is my place to vent. I am sorry for that. Research has repeatedly shown that those with good friends heal much better.

I do have more laughs than cries. You all, in your own way, make me smile. In fact this morning Kyle had me laughing so hard I was crying. I LOVE what I do for a living (although watching TV all day today has been fun - I could not do it all the time, I would be very fat as all I want to do is look at Pinterest and cook) and I make a difference. I LOVE my friends and family. I am happy with my life - we all have things we have to deal with and cancer sure does suck. But, as I have said before, if this is the worst thing I have to deal with I am okay with it.

So here is true Christmas wish - continued love, happiness and health. I want to extend that to all my friends and family. I am truly blessed.

Things I wish I had

1. Energy. Not 'run a marathon' energy although I wouldn't say no. Simple 'get out of bed' energy would do. I just can't seem to muster it. It's a weird feeling to be lying down and have so many reasons to want to stand up - need to pee, starving, work needs to be done, papers need to be written and you just can't do it. Not even having been lying there for 13 hours.

2. A perfectly functioning gastro-intestinal system. No nausea, no constipation/diarrhea roller coaster, no cramps, hiccups, indigestion, heartburn, farting, burping or, what seem to be the never ending hiccup/burp combos (herps as Kyle calls them) which are a huge hiccups followed immediately followed by a large burp whether you've eaten or not.

3. One thing I could not wish more for is supportive family and friends. Thank you all for all you do....

It's been another relatively rough few days, nausea is definitely lingering longer than it used to. Hopefully tomorrow I will emerge from the fog and, touch the floor, have a few good days before the next hit. 

How simple are these requests? Not too much to ask surely? Be grateful for the little things, one day you wake up and realise they were actually the big things.

Thursday, December 13, 2012

I'm melting..I'm melting

Had my CT scan today. All is clear. No evidence of disease. So it is working. And now only three to go.

Will write more later. Pretty tired.

Sunday, December 9, 2012

Longer and longer

It has taken me longer to recover this time. I am not quite sure why. I am tired still and the nausea has caught up with me. I really can't eat anything without feeling sick. Even if it is something that I really wanted.

When going to chemo this last time I was full of anticipation, anxiety and nausea. I am not sure why. I could not sit still - it was awful. In that respect the recovery has been similar.

I guess I have not posted much this week becuase all it would be is complaining. I am doing okay I guess - looking at the cirucmstances. I guess the extra pressure of the end of the semesster is adding up too. I have finished writing my final and after tomorrow I will have successfull (I hope) imparted knowledge of amplification on my first set of graduate students. There are things I did that worked well and some things that did not. Someone told me you have to teach a class 3 times before you actually like it. I am looking foward to that.

Next week is going to be a big week for me... I go on Thursday for chemo this week (not wednesday) but before chemo is the "big scan". This scan is to see if the cancer is gone - it could change my treatment either way. I am nervous. I will post results as soon as I know.

Although I know I have done 4 and there are 4 left ... meaning 1/2 way... that is so big. I know the hell that I have been through for the past 4 and I have to do it 4 more times!?!?!? I guess for me number 5 will be a much better place to be because as Jennie said to me yesterday - 5 is way more than 3. So those are my thoughts... still not eating much but losing weight is not a bad side effect either. Thank goodness I had a little extra cushion to lose. :)

I also guess part of my turmoil is that we are not going to California for Christmas this year. We flip-flop family holidays and it would be a Christmas in California. I am sad because I know Grandpa really wants us there. I wish we could. It makes me sad. Instead I will get to have treatment  #6 the day after Christmas. That sounds like so much more fun....

Well this blog is getting depressing ... lets try to end it with something positive... so here is a picture of my new doggie nephew Winchester - isn't he the cutest thing ever? And not to be outdone - my other doggie nephew Chase... now that is the way to make a blog happy :)

Saturday, December 1, 2012

On Perseverance

It was the same as before, just worse. For two days I have had nausea and I couldn’t sleep, then i am exhausted. I get stuck mid-sentence sometimes, unable to think of a simple word like “restaurant” or “achieve,” and unable to remember the names of my friends or coworkers. All this while trying to write a grant section and a final.
During my first few treatments, there was a part of me that thought, “Com’n, what’s all the fuss about?” Chemo wasn’t so bad. Now I understand all the fuss. If chemotherapy was just a few treatments, I don’t think it’d be all that bad – it’s the fact that you keep going back that makes it difficult. They can rough you up once or twice, and it’s a bit of an ordeal, but nothing to really whine about. But eight times? It makes me sick to think of having to go in there so many more times.

Consider the postage stamp: its usefulness consists in the ability to stick to one thing till it gets there. ~Josh Billings
This is…I guess the word is “longer”, than I realized. It’s not harder than I thought it’d be – I thought it would be hard – it just goes on and on, and – again – you have to keep going back and getting hit again and again.

I see now that there is quality in perseverance. It’s a quality that I’ve often ignored in my convenient, scattered life; but for the same reasons, it’s something I’ve never really needed. Usually my problems go away about as quickly as they come. I went to school for a really really long time, got 2 doctorates, have a great job... all while maintaining great friendships and marrying a wonderful man. I’ve achieved a good amount for 31 years, but I’ve never had to persevere through adversity. Well at least this kind.

The great majority of men are bundles of beginnings. ~Ralph Waldo Emerson
But I have questions about perseverance. Like, what is the difference between “perseverance” and “patience?” And also, does “perseverance” require, or even imply, a positive attitude?

I am still not upset about having cancer – I’m not depressed, I’m not disappointed, I don’t blame a higher being, or wish things were different. I still think that there are things that cancer has shown me that I never would have seen otherwise; I still think cancer is a good teacher. I am not ready to say that I am glad that I had cancer.

But that doesn’t mean I’m particularly happy about it, or that I should be. Certainly, I think there is something noble about a person that walks through something like this with constant sunshine on their mind, the kind of person about which people say “You know, she never complained once!”
I wonder, though, if Sisyphus particularly enjoyed rolling a stone up that hill? Or if Lawrence actually liked taking that camel across Arabia? Or if Churchill enjoyed sending his bombers over Axis territory? I would say they didn’t. And didn’t they do it anyway? And isn’t that exactly what “perseverance” is? Perseverance is not continuing a task that you enjoy, it is by definition, continuing a task despite your continuing dislike for it.

(This differs from “patience,” I think, in that “patience” is a little more benevolent. “Patience” becomes “perseverance” once the task in question requires “tenacity.”)

To get back to the point, I would say, definitively, that the quality called “perseverance” does not require a sunny disposition. It may help, but it is not required, and I’d venture to say it’s not always even realistic.

But there remains another question here – what is the proper way to handle this negativity? As a cancer patient – I think it’s tempting to try to hide your real thoughts from most people. I mean, when somebody asks you “How are you?,” they are not exactly expecting you to pile on them all of your problems. You don’t want people to start shying away from you because of your negativity; you don’t want to make other people suffer just because you are. That’s rude.

So what do you do? Well, personally, while I think “perseverance” does not necessitate optimism, I don’t think you can just go around moaning and complaining, and still call that “persevering.” I think that perseverance does require a certain bit of “acceptance,” if not “appreciation,” for the situation. That means that you shouldn’t go around ruining everybody’s day just because you’re on chemo. Have a little stoicism, why don’t you.

It’s clear to me that I wouldn’t be learning anything worthwhile if I liked having cancer. I think that cancer is worthwhile because it’s so awful – and it’s not until times like these – where I HATE chemotherapy, and I DETEST going to the doctor, that character can really be built.

So, I’m grateful that I detest going to the doctor, but that doesn’t change the fact that I do detest going to the doctor. And to act like, or pretend like I enjoy going to the doctor or to chemotherapy would be, I think, negating that which is worthwhile about this experience.

And it’d be a big, fat lie anyway, so I guess all I’m saying that you’re not going to get any of that happy nonsense out of me; and maybe this is just a very, very long disclaimer that doesn’t get to the point until the last paragraph.