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.

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 death...so 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.”

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. 

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.