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.