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.

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.

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 :)

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.

Halfway

Well round four is currently marinating. I feel okay. Kinda yucky... Just like the flu. Oh we'll better than some. I feel sick to my stomach. I realize now that cancer is just pretty boring... Get chemo, feel sick, get better, do it all over again.

On the way to recovery.

Thankful

So often we dwell on the things that seem impossible rather than on the things that are possible. so often we are depressed by what remains to be done and forget to be thankful for all that has been done.

Marian Wright Edelman

Someone reminded me the other night, in the midst of a rough moment, that while I still have a ways to go, I've come a long way and accomplished a lot. These moments, when I lose sight of what I have done and focus too much on what I have left to do are the hardest. So, this Thanksgiving, I plan to forget about how far I have left to go and think about everything that's been done already and savor the feeling of accomplishment. and with those accomplishments come so many thanks...

For life. Every day is wonderful. There are no guarentees in any of this, and you can choose to face each opportunity searching for the gifts in it or focusing on the difficulties. Even in adversity, there is so much to be gained. I've learned that life is truly what we make it, and really has nothing to do with how long we live it for. I'm so thankful for the new perspective so early in my life.

For family and friends. There's no way to survive cancer without a strong web of support. This has been quite the ride so far, and it's not over yet... I feel so fortunate to have everyone I do around me to lift me up and push me forward. I know it's not only a marathon for me, but everyone in my life, too. some days I think it's harder on everyone else, and I'm so thankful for all of them for toughing it out, too.

For the most wonderful cancer fighting team, ever. On every step of this journey, I've met amazing people who have given me so much, and so much more than just medical care. Every day they amaze me with their selflessness and kindness. Cancer can be scary, but every person on my team has made sure that fear is eliminated, and that I have everything I need to face cancer with a strength I never thought I had. And although last time I saw my doctor I told him that I hated him (for the record he said he was okay with that and that we would revisit the conversation when the cancer is gone.) These aren't just doctors, nurses and assistants...they are my heroes, advocates and life savers.

 

For my students and patients. For reminding me that there is nothing to gain by focusing on the adversity in our lives. For showing me the importance of focusing on what we can do, and ignoring what others tell us we cannot do. For defying all the odds. For teaching me so much about life. For giving me so many opportunities to laugh, to learn and to be inspired.

The list goes on and on.... this experience has been the single greatest and most unwanted opportunity of my life. It's hard, and at times it has it's dark moments. But, in the end, whatever the outcome, I know it's made me a better and stronger person.

And if we're not thankful for life, regardless of what hand we've been dealt, than what is there left to live for? Always look for the things you're thankful for...there's reason to be thankful in everything we're given...sometimes you just have to look a little harder to find it.

Round 3 update and my new reality

My doctor reminded me this is only round 2... yeah... round 2A as in there is a round 2B but a total of 4 rounds. I think I am happier thinking of it as almost 1/2 way done. This round is not as bad as previous rounds. Generally... I am tired, cranky, my body hurts like I have the flu and I am overall just a bitch. Sorry Kyle. I started shots to up my white blood cell count so that I don't get sick. That would be awful - I would end up in the hospital and then I would REALLY be a bitch. Well enough whining. Recently, I was asked by someone about to embark on the fun journey of chemotherapy how I coped with the 'new reality' I was faced with. How I could prevent myself from becoming resentful of friends and family moving on with the life that I had had pre-cancer that I wish I still had now? How I could process the thoughts of death, cancer, sickness, my appearance? How I felt about the fact that my body had betrayed me meaning I would never 'trust' it again? How I felt about having the naivety of my youth stripped away leaving only a harsher perception of a cruel world? The answer, I just do. The truth is, and this is something I have tried quite strongly to portray in this blog (sometimes, unsucessfully I'm sure) is that much of day to day life carries on as normal, with a few added unpleasantries! I chose to work during treatments and carry on working on the good days and from home on the bad days. This is obviously not a 100% bad change! Then there are the days that I'm in hospital or feeling crap after chemo. These will always be there, and are not fun. You adjust though. You learn now to cope with the effects and learn to deal with it in the way you would deal with a terrible 3 day hangover (albeit without the benefit of having had the fun night out!) and mine is delayed a few days. Aside from this, over the last 2 months I've had a great time of lazing about, time for contimplation. I've spent more time talking with my friends and family, I have an excuse to stay in bed and not work if I don't want to. In a lot of ways it has been really nice! I don't resent my friends. I guess it has helped that I have moved away from most of them. But when I feel up to talk to them I do, when I can't I can't but that was always the case. I've always been up for an adventure and will be again after this ordeal is over. Sometimes the best thing about an adventure is waiting for it to happen. I am also confident that, having experienced a life threatening condition, these adventures will be all the more exciting. If my friends can join me they will, if they can't they won't. Whats to resent? I don't feel like I've missed out on much of anything so far. I will say the best part about my friends is that they don't always ask "how are you feeling". They talk about life... if I bring up cancer, we talk about it, if I don't then we don't mention it. Dealing with the prospect of dying is going to have a positive impact on my future. Most people, including me, my age have the 'there's always tomorrow/next year/retirement' attitude. I no longer have this. If there's one lesson it's that so many people, of which I or you may become one, don't get tomorrow. Existing now to live in the future is foolish. One day I was thinking about this and asked myself, if I died this year, what would I regret having not done in my life? Next year, I will start doing these things one by one and constantly amending that list. I don't for a second believe that if I were to die in 5 years I would have nothing on my list, that's impossible. But, at least I'll know that I did what I could with the time I had rather than putting it off until 'tomorrow'. My appearance? Meh. It'll be fine. Yes I look like uncle fester now, short fat and balding, but that won't last. Only poor Kyle has to deal with it. Even I barely see it without make up and wigs. I'll put 'become good looking' on next years list. Easy. My body DID betray me. It attacked itself. I am fighting back though, hard. Will I ever feel 100% confident that I can trust it again? No. In fact I'm sure that I'll be over analysing every twinge for as long as I live. But, what better way to stop me from becoming complacent again? Little reminders not to slip back into the rut of life. Cruel, harsh world? No. The reach out I've had from people I care about, the help from total strangers who will take the time to make me feel better, the way on the good days I can look around and think WOW I really want to be here for a really long time.... no, the world looks better to me than it ever did. The new reality is going to be so much better than the old. I just need to keep fighting and hope I get the chance to live in it.

Life, Interrupted: Changed by Cancer By SULEIKA JAOUAD

http://well.blogs.nytimes.com/2012/10/25/life-interrupted-changed-by-cancer/

LIFE, INTERRUPTED OCTOBER 25, 2012, 5:55 PM 94 Comments

Life, Interrupted: Changed by Cancer

By SULEIKA JAOUAD

Theo Wargo/WireImage

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LIFE, INTERRUPTED

Suleika Jaouad writes about her experiences as a young adult with cancer.

On Monday evening I stood on a stage in front of a thousand people and talked about what I’ve learned since my diagnosis with cancer two years ago at the age of 22.

I was speaking at the Angel Ball, the yearly red-carpet event for theGabrielle’s Angel Foundation, which in this past week alone raised nearly $4 million for blood cancer research. I had never spoken in front of so many people before. It was one of the proudest moments in a tough journey over the past two years. And I was able to meet world-class doctors and researchers, other cancer survivors and even some celebrities.

On the drive over, though, my nerves were shot. All I could think about was whether I had spent enough time memorizing my speech, and whether I’d chosen the right dress. Lurking in the back of my mind was a laundry list of “to do’s” and checklists thrown like scraps on a mounting pile of anxiety.

But there was something different about this stress. It took me a minute to put my finger on it, but there it was: For the first time since my diagnosis I was stressed about something that didn’t have to do with cancer.

I bristle when the word “gift” is used in the same sentence as “cancer.” There is no upside to having a life-threatening illness. It can ruin lives, friendships, families and dreams, and trying to focus too much on finding a silver lining can trivialize real suffering. I would never have voluntarily chosen to go down this path. But like any other struggle, cancer has changed me. I wish I could learn about overcoming struggle by training for a marathon or applying for a new job, like many of my peers are doing in their early 20s. But life is unpredictable, and we don’t always get to choose our battles.

Cancer robs you of your ability to look at the big picture — or at least obscures it. The news that I had cancer ripped away the expectations I had of myself to be a certain type of person with a certain type of life. I used to think that looking at the “big picture” meant figuring out 1-year, 5-year and 10-year plans. Back in 2010, I had just graduated from Princeton with highest honors, and I felt pressure to get on the fast track to success — whatever that meant. Like a lot of my peers, I was in the thick of the culture of anxiety surrounding achievement. I signed a two-year contract at a fancy corporate job even though I knew I much preferred Birkenstocks to high heels, creative writing to spreadsheets. This path wasn’t right for me, but even though I felt miserable I continued going to work each morning because I was focused on the idea that having a practical, long-term plan was part of seeing the big picture.

I like to think that I eventually would have found my way to a career that both inspired me and paid the bills. But before I was able to figure out what that was, the cancer showed up. My life was interrupted. My doctors told me I would need intensive chemotherapy and a bone marrow transplant. From the looks on their faces, I could see that there wasn’t going to be any quick fix for my disease.

I had spent a lifetime focusing on the big picture, but cancer forced me to look at the small picture. I had no choice. I quickly learned that trying to predict the results of a bone marrow biopsy or a round of chemotherapy was a torturous and futile exercise. So, for the first time in my life, I began to focus on the present.

In the midst of doctor’s appointments and long hospitalizations I tried to organize my days around small acts of happiness by asking myself: What will make me feel better right now? How do I handle the worry I’m feeling right in this moment? Gone were the vague worries about a future career. Sometimes the answer to those questions was writing in my journal, visiting with friends and family, or eating peanut butter cups and watching bad romantic comedies. On other days, it meant having a good cry under my comforter. Little did I know, I was building muscles along the way — not lats and biceps, but invisible muscles that now kick in to carry me through stressful situations.

And so there I was, sitting in the limousine, a few minutes before I was to give my speech. I was nervous — that wasn’t going away. But I also felt a sense of calm. After two years of nonstop chemotherapy and a bone marrow transplant, I realized that as a cancer patient, I had experienced my share of real stress and pressure, and I had learned how to confront it and cope with it.

I still can’t see the big picture — the long view remains obscured. I can’t change that. But I’m noticing that I am changed. And I learned on Monday night that giving a speech in front of a big crowd — something that would have been difficult to imagine before my cancer diagnosis — was now well within reach.

Lindsey 3, Cancer 0

See, what cancer doesn’t understand is that I’m the home team, and I’m undefeated. Furthermore, I’ve got the best oncologist in town pitching, and the best chemo nurse anywhere who’s catching. My husband is on first, my brother & Laura at third, my parents are sharing second, Brandy is chasing Bailey around the infield,  and the WHOLE rest of the family is covering the outfield like a volleyball team. I’ve got friends in the stands, friends in the dugout, friends on the street, friends on the rooftops. I’m kicking the crap out of this cancer. It doesn’t even have a chance.

This tumor.... it should really have a name.... hmmmm.... gotta work on that... anyway it has got to be so sorry he climbed in me. He’s getting one express ticket to Tumor Heaven. The loser better enjoy the ride, too, because the ticket set me back more than he’s worth.

It just goes to show, you can’t be friends with a tumor. You invite him over to dinner and before you know it – the guy’s living with you, eating your food and using your hemoglobin without asking. Sooner or later you’re paying some professional to evict this pathetic excuse for an organism. And it’s sad, ’cause the guy can’t even live on his own, he’s just totally dependent on other people. But you can’t blame yourself, you can’t take responsibility for his inadequacies. You just gotta let him go. I mean, what a loser, right?

Treatment #3 was good. They even gave me my same room – how sweet is that? Like I was Liza Manelli looking for the VIP seating or something. The nurses are still nice, and again, I had no complications. They took my blood... I saw the doctor. After reviewing my results, it looks like my white blood cells are a little low...but okay. I will start shots for that next week. But overall, I am doing well. No evidence of lumps. Will do one more treatment and then a scan to see progress. Doing wel!?!? Of course!

I’m the HOME TEAM, baby! Bring it on!

I’ve found out something about myself during all this – well, I’ve found out many things, but this in particular: I am awesome in adversity, it’s monotony that kills me. Strap me up to the chemo IV, I’ll take the pain and the fatigue and I’ll keep smiling, but put me in a cubicle with a pile of paperwork and I’ll never live. Guess this is why I wanted a job with so much diversity in my days... clinic, teaching, research, student questions, patient questions, phone calls, hearing aid reps, faculty meetings ... YEAH I love it all!!!

Now, in all honesty, while I may be feeling particularly cocky tonight, I am not feeling particularly good. Chemotherapy is exhausting, and as I’ve said before, I feel like a truck ran over my soul. But I am going to Batman live tomorrow. And it’s probably because of the steroids, but my mind is blaring out of my mouth at Michael Phelps speeds. I’m like a revved up kid before bedtime. I don’t want to go to bed! Just ten more minutes!

Hair update... and thank yous

 I have received several packages from great friends and family. Thank you so much for all of the care you put into each one of them. It means so much to me. I know that I will use all of the essentials. I don't know how it happens, but just when I am down... someone seems to know and a letter or package shows up.

I thought I would do a hair update.

I have purchased 2 wigs and a TON of hats. I love hats - who knew. I never used to wear hats, now I do all of the time. The wigs I purchased will be for clinic use.

I did wear the wig out on Saturday when we went out. I felt like an impostor and felt uncomfortable. I took it off after lunch and wore a hat. I am much more comfortable in a hat. When my parents are here, we are going to do a series of pictures with all of my hats.

To update you all on my hair... below are the pictures of my thinning hair. It is thinning quickly and has thinned more since these pictures were taken. Also please note, I have two "horns" in the front. I always knew I had cowlicks ... but with this short of hair, they look like horns. Ryan always knew I had horns =)

Most days at work I wear a hat and at home too - I always learned that you lose a lot of your body heat through your head... wow what a difference it is with no hair (or very little). My head definitely gets cold easily.

Well that is all for today. I have my third chemo in a little bit - will update more later.

Empathy... aka: how to talk to a cancer patient

When Kyle and I went shopping yesterday a few things were said to me that were not meant to be hurtful, but honestly, most people don't know what to say. Or better - what not to say.

When something happens to someone, like say having cancer or when someone's close family dies, I think we don't really know what to say. It becomes awkward and then uncomfortable.

I went out for the first time yeterday as a bald cancer pateint. Before I shaved my head, I did not feel like someone with cancer. Now I do. It is just as uncomfortable for me taking off my hat as it is for you.

So there is a fine line to walk. Acknowledgement is key. Please don't ignore the fact that i have cancer. Please don't just pretend it does not exist. It makes it more uncomfortable. However, if we do talk, I don't always want to talk about cancer. I do want other things to talk about and hear about. I do want to hear about your kids, your wedding, trips, great grant you just got, article you had published, etc. This is not going to take over my life, but I need your help to do that.

This is not meant to be mean... I know people don't know what to say... some things are more helpful than others:

Things that are helpful - and all of these have come from my friends and family:

1)  "I am very sorry you have to go through this." This is the best statement said to me. It is awful... and thank you for recognizing it. This is honestly one of the best things you can say... it shows true empathy.

2) "How can I help?" and then actually do it. This is the best. I have such wonderful friends and family who have done so much. But don't say it unless you actually mean it.

3) Just acknowledge the struggle. Cards, email, phone messages and all words of support are appreciated. I keep them all. On bad days I look at them for strength.

4) "how are you feeling" But only ask this if you really want to know. Some days I am good, some days not. If you don't want the long winded answer - ask this on the days right before chemo. If you really want to know how I am doing, you may have to sit down while I really tell you. Don't ask if you don't have time to hear the answer.

5) "Let me know what I can do to help". This is a great one to hear, but it is what everyone says. it is like the standard uncomfortable ending of every conversation I have about my fight. So... please only say it if you really really mean that I can call you when I really do need something.

6) "Wow that really sucks" and then pause and listen. Maybe I needed someone to lament with. Maybe I just need to bitch about it... but honestly, it does suck and sometimes I need someone to recognize it.

7) "I admire your courage and strength to fight this disease." Damn right I am fighting... it is good to know that someone is listening

8) "You are on a very challenging road right now, and you are doing a great job." This one follows with #7.

9) "My prayers and encouragement are with you" it is good to know that people care and some higher power stuff couldn't hurt either.

10)  Give me a hug, or a handshake, a pat on the back or a touch on the arm somehow (if you are not a touchy person). Tell me that you’re concerned for me, and you’re looking forward to me being a cancer survivor. That little touch makes me feel less like a non-human :)

THAT IS WHAT I REALLY NEED....

Now on to things that are not helpful:

1) "I know what that is like. I got really sick once from the antibiotics that my doctor gave me for a UTI." This nice little piece of comfort was handed to me by the nice lady in the accessories department at Macy's. I was in search for scarves that were not too long to put on my balding head that don't make me look like a gypsy. Please don't tell me you know what it is like when you had to take some pills once.

2) "I helped my good friend who had cancer. She died last month... she lost the battle." This one was from the lady at the accessories store I visited after leaving Macy's. Please don't tell me about your friend/grandmother/neighbor who died from cancer.If you want to tell me about someone who beat it, or even someone who is currently fighting, that is fine - good even, but I really don't want to hear about someone that died. You think that I don't think of it???

3) Do NOT tell me about your mother, sister, father, old Aunt Milly and their experiences with the horrors of Chemotherapy, how much they vomited, their terrible death, how badly burned they were through Radiation or other awful stories that will simply depress me and make me more nervous. Now... if YOU were the cancer patient, this is a completely different story. I want to hear from you, how bad, how good, how ugly or not... you are a survivor - I need your strength. You made it through it --- so can I.

3) "You look like [insert: an alien, avatar, Pinky or The Brain, Gollum]." This one is courtesy of the nice little lady who was also looking at hats at Macy's - this is only okay if this person is under the age of 9. Then I would have understood... but she was in her 20s. I gave her the benefit of the doubt that she thought I cut my hair like this on purpose... I told her it was because of chemo. She said "Ummm I know" rolled her eyes and walked off.

4) Don't ignore someone with cancer (or anyone who is dealing with something difficult) because you don't know what to say or when you do talk to them don't ignore the fact that it has/is happening. Say something authentic and from the heart (just not anything on this list!). The old joke about voting applies: do it early and often. Even just acknowledgement is nice. The first lady who was in the accessories department ran off rather quickly. I am going to blame it on that she really just got the sudden urge to poop or she was a snotty sales person...

5) Do not talk to me about the alternative medicine that you read about in Crazy Monthly, that is sure to cure me of the disease. Don’t tell me that the treatment isn’t good for me, and that lots of people end up dying from the treatments, or that chemotherapy is just a big conspiracy between the government and the pharmaceutical companies, etc., etc. Don’t tell  me how I got it. Just stop. I don’t need to hear about it. Oh and I am still not quite sure what to do with my "Kill Cancer for $5.15 a day" book given to me by the secretary at the chiropractor's office...

Oh happy day....

Would you have thought that a cancer patient, who was undergoing chemotherapy, could carry out an entirely normal day of - OMG - fun? I wouldn't have. Cancer, and more so chemotherapy, were death sentences. Figuratively, if not literally. My perception was the sick, bald, sad person with their head in a toilet bowl for months, slowly wasting away and getting paler and sicker. I am under no illusions and know that this can sometimes unfortunately be the case. In fact sometimes I look like I could be the scary person who everyone is imitating for Halloween. It is not however the only possibility. One in three people reading this have been, or will one day be, diagnosed with cancer. One of the goals of this blog is to make that day a little less scary and to keep you all in the loop as to how I feel. Cancer, tumor, chemotherapy, radiation, prognosis, survival, relapse, these are scary words. They will consume your every thought if you allow them to. Don't allow them to, life goes on.

Today, Kyle and I went to Sioux Falls. We went to lunch, went to the movies and saw the new James Bond, went to the mall and then to Target. It was wonderful and such a good time. How can such an average day to most people be so so fun to me? Because I hadn't thought it would be possible. I thought I was doomed to a minimum of 4 months of life on hold. Not to mention the possibility of being the dreaded 1 in 25 who doesn't respond to chemo in this time. While I won't pretend that NO aspects of life are on hold, or that the fear of being that 1 in 25 doesn't maintain a permanent residence in my brain, or that there aren't days where I would give anything to just be someone else for a few months, life does indeed go on. And it's fun too.

Without cancer today would seem like any other day. I would not be appreciative of this day or anything it brought. The ability to see each and every day for what it is - borrowed time, a limited resource, something that will eventually run out - is a gift. Make the most of it while it's here. Do I sound like a crazy person yet? Or stoned at least - I did live in Washington for a while you know? Probably. But maybe one day you'll understand what I mean - but to be honest, I really really really hope that you don't.

Port

This is a picture of the thing they implanted in my chest to make chemotherapy easier.

Except my “port” is not orbiting in space, above a beautiful blue earth and purple nebula, as the picture suggests. My port is located under my skin, about an inch south of my left collar bone. A tube connects it to my heart, by way of a big vein in my chest.

It is also *not* the size of the earth. (The earth was, seriously, just not a good backdrop for this promo shot. I guess it’s probably hard to make this thing look cool, though. You gotta throw a nebula or an icecap or something like that in to hip it up.) It’s maybe 1/2 inch in diameter. It’s part of me now.

I also sort of doubt that mine is stainless steel like the picture, I believe they told me it was plastic – although I surely don’t know what the thing looks like under there.

If I didn’t have this port, they’d have to put the poisen cocktail straight into my arm. Getting chemo in the arm is the Dirty Harry, “Go ahead, make my day,” psychopathic way to get chemotherapy. This is especially true toward the end when they can't find a good vein. I had to have my first via the vein - that area is still tender - 3 weeks later. The nurses cringe when they talk about it, as if they don’t like giving it like that anymore than people like getting it like that. Something about blood clots, burned skin, melted veins…let’s not talk about it…

I suppose I’m grateful, then, for this funny looking thing sticking out of my chest. It looks pretty stupid, though. I can't wait until I am deported - that will mean this whole thing is over....

Who hates chemo???

You've never noticed how much you want to eat until  you feel like you can't. It is awful. I am so hungry, but my stomach hurts. I guess it is a tug of war.

Also, I am taking more meds than I ever have in my life. I take more meds to counteract the side effects of chemo than the chemo.

Round 2 has been mostly free of the nausea and lockjaw that I experienced last time. I think that however may have been easier. Instead, I am aching all over, my muscles throbbing as if I've been carrying out some form of strenuous exercise for a week straight (not that I know what this would feel like, but I can imagine it hurts). My stomach however is the most troublesome. Grass is always greener I suppose, I would have happily traded for heartburn when I was living in lock-jaw land.

The cruel part of this disease, or rather treatment for this disease, is that it leaves you in limbo. A constant battle between mind and body. I'm not out of it enough to want to sleep and sit for days at a time, but I'm too out of it to do anything else. My mind wants to act normally, my body won't hear of it. I don't recognise myself in the mirror. I look tired, bloated, pale, dark circles under my eyes, now balding shaved head. I don't look the way I do in my mind. It makes me think this is what it must be like to grow old - your body failing you, your appearance changing beyond recognition.

I will put up with it all, and more, as long as it works. That's the worst part - not knowing if it's going to work. Nothing to do, no energy to do it and too much time to think. The alternative is unthinkable. My body is weak but my mind is strong. Well, stubborn. I'm nothing if not stubborn. Tomorrow will be different. Better.

What is not so certain is whether or not you all can avoid anti-depressants after reading this post - WOW this is a depressing one. I do try to keep the blog positive. I also however, as you know, keep it honest. Kyle says it's good that I'm feeling the effects of chemo so strongly - proof that it's destroying everything in my body - including this dreaded cancer. Easy for him to say. I see the logic though, I'd be seriously worried if I felt perfect.

The new plan - break the 8 treatments and 4 months into more manageable chunks. Having experienced 2, the 8 is seeming unachievable. I am now therefore halfway to my 2 month scan instead of 2/8 done. Only 2 more chemos to go!

Still chugging on...

Days are long... I am exhausted. I can't sleep well. I am not sure if this is the chemo or what it is. Other than that, for the first time in my life I am experiencing heartburn. Wow!!! It sucks. How does anyone function. It is a knot. Well I guess I would rather this than nausea or the lock-jaw I had last time.

I did cut off my hair yesterday. I have not had the energy to get out the camera. I promise I will post a picture. Kyle is really rather talented with a pair of sheers. Guess it is a good back up career.

"As it neared the top of the grade, which had so discouraged the larger engines, it went more slowly. However, it still kept saying, "I--think--I--can, I--think--I--can." it reached the top by drawing on bravery and then went on down the grade, congratulating itself by saying, "I thought I could, I thought I could."

Mass Exodus and the NYC Marathon

My hair is making a run for it... or a fall for it. It is coming out in clumps. I am going to try to wait until after clinic on Tuesday to shave it. Hopefully I don't look like Gollum from Lord of the Rings.

I didn't really realize how much hair I have. WOW! I made a huge pile in the shower but still  have managed to make a real mess aruond the house. This is not a clean process. It is taking all I have not to shave it now.

I did end up purchasing a wig... from online. It is cute, something I can wear to clinic or out to dinner or such. It is not high end, but it will work for the short time. I hope to only have to wear it for the next 6 months or so.

So they cancelled the NYC marathon. I understand why... I am confused as to why so late... but I understand. But not to worry, every muscle in my body hurts. I feel like I have run the marathon... well I guess ran it yesterday. It hurts to move. I am not sleeping well. I am blaming it on the bed too. We are going to have to replace our matress - damn it! I am going to have to take up a collection to replace it... maybe I can sell my hair. :)

When I get sick I get scared. It's scary. It's not easy to think about. All I want to do is survive. I want to be healthy. It also makes the prospect of the next couple of rounds of chemo that much more daunting. I don't want to be bald. I don't want to be sick. But even more, I don't want to die for a long time so I will continue to do this.

The exhaustion is not nearly as bad as it was last time... I think surgery had exacerbated it... but it is a day later. I have to teach tomorrow and have to drive to Yankton for a doctors appointment. I am not looking forward to the drive. I love teaching though. I hope to just make it to class. I am going to try to talk Kyle into driving to Yankton for me :).

On a positive note - looks like just an achy jaw this time not lockjaw. Some nausea but no vomiting and just general fatigue and achiness. Hopefully it gets better and better.

Okay done complaining now - Oh and congrats to my cousin who got married yesterday!!!

Giving a cancer diagnosis

I have decided when giving someone a cancer diagnosis a doctor needs to do it in a thick Arnold Australian accent. For some reason "Lindsey - you have a tu-mah in your neck and chest" sounds much less scary. And it reminds me of my childhood. Goodness I loved Kindergarten Cop!!

For the record when I first showed Kyle my lump... These were the first words out of his mouth "it is not a tu-mah". Epic fail on Kyle's part. 

Chemo #2 - Day 2

Feeling okay today. Giving myself permission to not do much today. I am having a hard time doing this. But I will NOT do much. Working is all I know.

I know it may be bad tomorrow, but not really anticipating it. This is good. Other people give me so much strength. Seeing and knowing that other people can show up to work and push past and overcome their adversities - this is the strength of true human spirit. I also have learned that cards mean so much. I am going to send more cards when I get better. Letting people know you care is so important. I cannot thank all of you enough. Your notes are the highlight of my days.

One of my friends mom, who sucessfully beat cancer, has been an amazing source of inspiration and advice. She sent me the following quote. I think it applies to most of life....

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. - Eleanor Roosevelt

100% chance that living will kill you

So I am taking it easy. I wen to a faculty meeting this morning. And then came home, put on my sweats and took a nap. I am now getting heartburn, but not much nausea. I would rather the heartburn. I got some OTC stuff and am feeling better.

I did read some interesting stuff. Apparently, in 1996 a studey identified 7 factors that consistently predicted the probability of remission in Hodgkins Lymphoma patients. (Well, actually, they were looking for the probability of what they called the five-year “Freedom from Progression of Disease,” or FFPD. I interpret FFPD to basically mean remission.)

The probability of remission is much different than the probability of survival, so you have to be careful not to read the results as such. It’s easy to get carried away with cancer statistics.

The 7 factors include things like age, sex, and the measure of certain chemicals in your blood. As I understand it, a patient without any of these 7 would have a remission probability of 84%. For every factor you have, you lose 7%. Also this is for those with advanced stages HL, I am lucky I am not advanced.... Well, in this case anyway. :)  But follow me here....

According to this test, for those with advanced stages, the provability of remission is around 60% for the next five years. But why stop there? Since we’re discussing statistics, I should mention that progressive heart disease is much more likely in Hodgkins patients following chemotherapy. Moreover, patients that receive treatment for Hodgkins Lymphoma are 4 times more likely to develop lung cancer, and are at an increased risk to develop leukemia within the first 10 years following treatment. In fact, according to the National Cancer Institute, the number one cause of death among Hodgkins patients is second cancers that develop following diagnosis, but for those with lower stages like me, the number one killer is..... Wait for it..... Getting old.


Be that as it may, the Lindsey Jorgensen Institute of People Who Are Nuts says that if you don’t take the chemotherapy to cure your Lymphoma, you have a 100% chance of being an idiot. If all of these terrible thing that follow treatment happen, you should feel lucky that you lived long enough to develop a second cancer, heart disease, or whatever else.Realistically, I think these numbers – and really, any cancer statistics – should mean very little to an individual cancer patient. There are just too many factors involved to make any of these statistics worthwhile. Every individual responds differently to the treatment of cancer, and considering all the things modern medicine still doesn’t know much about this thing called cancer, there’s really no way to know what will happen. So, while these numbers are, I suppose, impressive or intimidating, they don’t effect me much. The really valuable thing that can be taken from all this is that tomorrow is not guaranteed, and you better not let today pass without making the most of it.

1/4 Done!!!

Finished #2. Feeling okay. Went out to dinner. Parents leave tomorrow-booooo.

Going to bed. Happy Halloween.

What is chemo??

Before all this I didn’t really know what the difference between chemo and radiation was, it all just seemed like some nondescript, horrible stuff that I hoped I never had to go through. But the world keeps spinning, and it turns out chemo and radiation are two different things. I’m still not entirely clear on what radiation is, and I’m not sure I’ll even have to go through it, so I’m happy to just discuss chemo.

I actually took most of this from someone else. It is a great description; I have updated it to apply to me... but the template is pretty much someone else's. I guess on a blog it is not plagerism, right?

Chemotherapy is a treatment for cancer that involves an IV, a lazy boy recliner, and cookies. The lazy boys at the place I go are all brown and covered in fake leather. They are lined up against a wall with dividers between them, giving the same sort of fragile privacy that similar dividers provide in the ER or other really private places - like maybe the men's bathroom.

Each lazy boy has a phone next to it. This is in case you are super busy and need to make important phone calls whilst they are pumping you full of the drugs that will damn-near kill you. I don’t know anyone this busy.  Each chair is also equipped with it’s own television that gets poor reception of local stations. This is convenient if you are really nuts about daytime television and you wouldn’t miss your soaps for anything.

There are cookies. I don’t know where they get them, but they are awesome. Clearly the bakery keeps the best cookies for us cancer patients. They probably use a pound of butter in each cookie, but I mean, what do we care, right? What, is it going to give us cancer? Gimme one of those damn cookies, and put more butter in it next time.

The place that I receive these great cookies is a sub-section of a regular clinic. It is like the secret room that you never really want to enter. It is like that red button that the astronauts are told not to push, but you really wonder what is behind the door that holds those great cookies.

The rest of the cancer room is pretty sterile looking. The walls are painted with the soothing, tan color that they always use on those HGTV shows. The nurses sit at a big desk and talk to the patients. They smile a lot. They talk in quiet sweet voices - they must eat a lot of cookies.

When you come for your chemotherapy session, they first take your blood and send it off to “the lab,” which must be a place very, very far away, judging on the amount of time it takes for things to go and come back from it. You then have to wait for the far-away people at “the lab” to test your blood.

Then one of the nice looking nurses puts on what looks like a bomb-defusing suit to mix the chemicals. She wouldn't, for some odd reason, be in contact with any of the chemicals they are about to put into my body. The drugs are made and mixed exactly based on my height and weight that day. But based on how many cookies I eat or how much time it takes - this could really vary.

Meanwhile, you are still sitting in the lazy boy, watching your soaps and eating your butter cookies. The nurses hook up an IV to the port that was surgically implanted in your chest and give you huge amounts of “saline.” “Saline” is something that looks like water but is not but that makes you have to go to the bathroom a lot. Which then puts me to pass tby the tray with he cookies - again.

Before the drugs are fully mixed, another the nurse, puts several drugs through your IV. First, she puts in a steroid. This is to bolster your system before the other drugs destroy your system. Having the steroid is a lot like having a direct IV drip of pure, liquid caffeine. It is what I really wished for when I was in college... but now just gives me a really bad jittery feeling.

Then the chemo drugs come. Their are four different drugs that need to go into you before you can leave. The first one is colored like red Kool-Aid. It’s a little frightening to see the red liquid floating down the IV tube towards your body. You think, “OH GOD, here it comes!” And the nurse is looking at you, and you are looking at the nurse, and suddenly it seems like all the other patients are looking at you, and you are looking at them, and the red stuff is coming down the pipe, and the nurse is looking at you, and you can’t stop fidgeting, and the room is getting smaller, and it’s coming and it’s coming and it’s coming!!!!

But then it’s not so bad. It doesn’t feel like anything. One by one they put all the drugs into you and it doesn’t feel like anything. You might as well just watch your soap operas, because it’s not exciting. I bring my laptop or my iPad and watch movies and listen to music.
 
Then they give you a few shots that will, again, help fix the system that the drugs just screwed up. By this point you are pretty sick of being stuck with needles and you have had your fill of butter cookies. They take out the IV and they tell you to go home, that’s it.

 

Family and hair....

My parents are here!!! It is great.... having a great time and drinking and eating great food! My mom made Curry tonight for dinner. It smells wonderful!!

And thought I would update. My hair is still intact and on my head. Not sure if it is going to fall out, but expecting it. Like the shorter hair, but maybe a little longer.

                                                  Drinking margaritas!

Happiness

I have found what is happiness.... It includes 2 glasses of wine 3 Oreos and a movie with my husband. And it does not include nausea or extreme fatigue... This is the life.

Halloween

It has been quite the decision as to what to be for Halloween. I mean I have great scars across my chest (see below) so I could get some kind of knife or something. It is also election season and I am sure I could pull off some kind of something about me breaking out of the binder of women or something.

However, I am going to have chemo on Wednesday... Halloween day... so I am thinking since I am not going to be feeling so well... and I might be kind of grey looking. I am just going to put on a bunch of grey clothes and go as "50 Shades of Gray". Although go is a relative term, what I really mean is sit in my house and know that is what I am. I know you were all wondering. So there it is folks, my lack of enthusiasm and creativity has shown its' self again.

Today is a good day

Today I feel better. I have not felt well for the past few days.

On Wednesday, I lost the battle of not throwing up. Actually lost it during class. I did not feel well in the morning. I thought I needed to eat something. I ate. I got sick in the middle of class, excused myself, threw up and then went back and taught the rest of my class.

I am not sure if it had to with the fact that I had not taken my nausea meds or that I was so backed up. This really does back up your system. I took a lot of Senecot and MiraLax... they are not miracles. They did not work well for me. Oh well - guess it had to either go up or down. I ended up taking a nap in my office on the 3 inch foam pad Kyle brought in just for that occasion. I needed the nap.

On Thursday i was feeling better - still a little queasy, but better.  I assume this is what the first trimester of prenancy is like. A little queasy. Not nauseated enough to throw up but enough that you are aware of the smells and foods you eat.

Today is better. I have felt pretty good all day long.  I think I am going to keep taking my anti-nausea meds. I guess I need them more than I thought.

According to Web MD - the most reliable medical source :) , the things that make you more prone to nausea are:

Getting high doses of chemotherapy drugs

Getting certain chemotherapy drugs intravenously instead of by mouth, since it will be absorbed more quickly

Getting frequent treatments -- the less time you have to recover between treatments, the greater your risk of nausea

Being a woman

Being younger than 50

Having a history of motion sickness

Being prone to vomiting when sick

Not drinking alcohol

Really I fit all of these - and we all know how little alcohol I can handle... So the moral of the story is - drink more so that if you get cancer you won't be as sick from the chemo because you built up your tolarance.

Wig...

Right, I am now officially a wig expert. As hair loss is one of the biggest side effects of all chemo-therapies, I think it is worth a mention or even a whole blog post! Not all chemos cause hair loss. Most cause some degree of hair thinning. Also all people react differently. I'm told I have a 90% chance of losing 50% or more of my hair. On the other hand, eyebrows and eyelashes may or may not also go (Eeeek!) as well as all other body hair I sure hope anyway (so long gilette venus my old friend, I will not miss YOU). What is the point of chemo if not that you don't have to shave your legs. A very good friend, on hearing my diagnosis, pointed out that I have spent thousands on hair removal. Stupid move, would have come out anyway. Hilarious, I love her.

Once chemo is over, my hair will regrow. Very fine at first, they call it chemo hair. This needs to be cut 3-4 more times and my own hair will return. It will take 12-18 months to get chin length hair. Wowzers. Should have enjoyed my hair more.

At this moment, I feel OK about the hair loss - once I cut my hair off I am better now. When it comes to the day it starts coming out, or the day to shave my head I will not feel OK about the hair loss. Simple as that.

So Kyle and I went to the wig place in Sioux Falls. A strange sort of environment, wigs everywhere, alopecia and chemotherapy patients. Overall a nice vibe though weirdly enough. It was quite strange to see all the wigs everywhere...

So, wig choices are: synthetic (don't need styling, cheaper, cant be worn past shoulder length as they get tangled and matted when rubbing against clothes) or real human hair (need to be washed and styled, can be any length, lasts 2 years). So I decided to try both. The worst part about this was when she put it on they don't sit right because of all my hair.

What I settle on: I don't know if I am going to get a wig at all. I think I may just rock the hat and scarf look. They just don't feel right and really they are not going to make me look or feel less sick. We went to the really really nice place, too. Actually went to a few places - the first much nicer than the others. If I were to get one it would be very expensive and nice, but I am not convinced I need or what it.

I did consider or not I would be freaked out my having someone else's hair on my head or not. Going to try not to think about it. Also, wondering whose hair this was and why they sold it. She told me most the hair was Indian hair. What kind of life must they have to spend years growing this hair to sell. Made me feel very lucky.

Moral of the story, appreciate your head hair, don't waste money on removing your body hair :)

oh and while I have not decided if I am going to get one...... Here are some pictures.

Brunette - really cute color... not sure about the cut - too much in my eyes

Liked the feel of the hair - WAY too blonde - would go darker, but this one could be cut to any shape.

Old lady hair... this one is synthetic and way to thin - you could see my hair underneath which meant that you would be able to see my scalp without hair. I did not like this one.

Red head - this is the same "hair" as the blonde one....