Life in Remission

So I successfully achieved what I dreamed of.... Remission. I have hair, some neuropathy and some recent flare of breathing problems, but no cancer.

This breathing probs has caused me to have significant anxiety. What is causing it? Do I have bleomycin lung damage? Radiation pulmonitis? Is it something in my environment? Should i request a scan? please let me do something to fix this. I feel helpless. This anxiety has spilled over into my life... It is making me realize how much my life will forever be affected by this experience.

I heard someone say - that everyone who has gone through cancer treatment will spend the next while living 'scan to scan'.

I am now 6 months out of chemo and 4 months post radiation. I have a head of very cury hair, and hair in all the other places I never wanted it. I am having to learn how tiodeal with it and not look like grandma with a perm. However, there is not one day that passes without thinking of The C Word. It has changed me. That feeling when you remember something really important that you've forgotten and your stomach does that little flip - it's like that all the time. Working at a desk - stomach flip. Reading a book - stomach flip. Don't get me wrong, I'm far from miserable sitting around thinking about it all the time but it's still always there making everything seem just a little bit worse but also a just little bit better.

And then I am okay. I can feel my hands and feet. I can get up and work all day without extreme nausea or fatigue. But the moment something feels strange, like my breathing, it all comes back. It will always be my first thought. My view of my body is different. It betrayed me once and I have lost trust. 

How to really move on is the current dilemma and it's one that is not often talked about in the cancer world. I'm no fan of the cancer warrior/battle imagery but I am starting to think that the real 'battle' is what comes afterwards. Does it just dissipate in time? Will I one day be able to say that Mr. Hodgkins hasn't crossed my mind for a week? A month? Maybe. But then what happens when I get sick? Will my first thought always be cancer or its side effects? 

In the meantime though I am very conscious of the inclination to wish your life away - live scan to scan- waste that life that you worked so hard to keep. I'm 2 months down with 10 months and counting to be out of the high risk relapse danger zone. My next scan is in October and then the next and then the next. If someone has some suggestions for ways to not wish those months away please let me know. On the other hand, being so conscious of time means you are more inclined to make the most of each day/week/month. Ever think 'wow I can't believe the school year is starting, where did summer go, it's September already'?? Well if you were counting months away you wouldn't- I'm being extra productive and loving it! 

So I plod on, counting without counting.... 

Caffine and cruise-control

It has been a long time since I posted. I figured it was time for an update.
Honestly, I stole the title of this post from someone else. Someone that has much more to deal with than I. However, I felt it appropriate. I have been living on caffine and cruise-control since I got this diagnosis in October.

Right now I am doing fine - I am in the waiting game. I have to wait until July 8 for my next PET scan. After that I will get the news July 10. I hope that this is it... I will have checkups for the next 5 years and then be done. If not, I will have salvage chemo and stem-cell transplant. This is the longest I have gone in the past 8 months without treatment.

When I was down in Floriday it was hard. Much harder than I thought it would be. Much harder than I am willing to admit to anyone. I went into true cruise control. Just trying to survive. I think that is where I really started to think about what was going on. What really was happening. Before then I was in fix it mode.

Things are going well. I feel like I have not had much time to breathe, let alone process exactly what has happened over the last year. I had expected my first year to be crazy, but not like this.

I had a student say to me the other day: Wow you must have really been feeling bad last semester; youhave so much more energy. I guess that pretty much explains where I was... limping by. I have guilt on what I didn't teach... what little of me my students got; what little of me my family got.

Guess that is guilt that I will just have to deal with. I am still trying to catch up. Living on caffine and trying to get off of cruise control. I am trying to take back my life... and wait.

On more thing...

Oh one more thing.... I have HAIR.. like real hair!!!

15 down 10 to go

So it has been a long time since I wrote a blog. I have been struggling with what to say. I obviously decided to go to florida for treatment. I moved down here... well at least for the next 5 weeks. It has been pretty hard being here by myself. I have had the most amazing support system though. So I am doing proton radiation therapy - if you would like to see the place: www.floridaproton.com Every day Monday through Friday, I have treatment. It does not take long, but it seems like it consumes my whole day. I don't know until the day before what my "time" will be, so I really can't plan anything. It really sucks. But overall it is not nearly as bad as chemo, but it is tiring to be doing it EVERY DAY! I am generally pretty exhausted too, but I am not sure if that is because of the treatment alone or if it is also because I am not sleeping well. Well when I first came down here, I got a cough. It was pretty bad - I am blaming Kyle. He got the flu when visiting his family in CA, then came back, got better then came down with a cough and the got a sinus infection. I guess we were both saving our "sickness" until after I was healthy enough to be able to fight it. So then I started treatment and my cough has not gone away. At first I thought it was the cold, but now I think it is because of the radiation. I feel like I have something stuck in my throat. It hurts when I swallow. Also, my throat is really really dry. I wake up in the middle of the night with the driest throat I have ever had - like it hurts to drink water. I also have what looks like a sunburn on my chest. It is somewhat irritating, but does not really hurt. Other than the tiredness, sunburn and throat issues - that is really the only bad part of this. Oh and I have no voice, it makes teaching a lot of fun... I am glad my students are so understanding!! So a week or so ago I had a CT scan. It showed some additional growth in the superclavicular area. The doctor told me not to be discouraged. I did not have a scan before I started radiation and it could actually be a decrease from that time. Originally I had 22 sessions of radiation, but because of the additional growth, he increased it to 25. So I had another CT scan today. I will find out the results on Wednesday. I could feel a growth above my right clavicle. When I started radiation, I could also feel little "peas" above my clavicle. Now I can still feel the one lump, but I can't feel the smaller ones and the one larger one feels smaller. Overall, my spirits are good. I really miss home, my husband, friends, students and work. So I have 2 weeks left - guess we will see how it goes and then I get to go home!! Kyle did come down this past weekend for our 4th wedding anniversary. We went out to a great dinner. I get free tickets to universal for being a cancer patient, so we drove down on Saturday to Universal and went to Universal Studios and Island of Adventures. We did Harry Potter World and drank butterbeer and overall had a great time. it was so great to get out of the world of cancer. I didn't feel like a cancer patient or a person with cancer. I felt like a normal person. I am a little nervous to go home because then starts the big wait. I wait 2-3 months for another PET scan. I am nervous because I won't feel like I am fighting - I am just waiting to see what happens. I don't really like this, but hopefully it will be the end of cancer. Oh one more thing, my students are amazing!!! They are holding a fundraiser for me. I feel so lucky! Also, I am amazed with the amount of donations they have received. My community has really showed me that our move to Vermillion was absolutely the right one!

Bumps in the road

I am thinking of this as a bump in the road... not really a setback. My positivity needs me to think that way. I had a PET scan, my doctor called me and wanted to see me ASAP. he told me that there was still some positive activity on the PET in the superclavicular area (area where the first bump was). After reading the literature, it appears that it could be a false positive. However, it is not reall somehing that I am willing to chance at this point. I really need to think about my options. So what are my options? 1) traditional involved field radiation 2) proton radiation therapy. What is proton therapy you say??? Proton radiation therapy targets cancer more accurately. Unlike traditional X-rays, protons can be directed to reach only the areas of the body affected by cancer. As a result, normal, healthy tissue receives less exposure to radiation treatment, reducing the risk of complications. Fewer treatment complications may enable our physicians to deliver higher doses of radiation to the tumor. And this increased dose of proton radiation may improve a patient's chance for a successful outcome. So what does this mean - they hope to kill the bad stuff while avoiding my heart, lungs and breast tissue. This gives me a significantly improved long term outcomes. the only problem is that the best place to go to do this is University of Florida in Jacksonville. So here I am. I had my consultation today. It was good... and hard... and really I just wanted him to say that I don't need it. It is looking like they will say I need it. They gave mea tetative start date - the 18th... as in next week. They also made me a body mold and face mask. It is rather entertaining. My hands are over my head. I am molded into a body mold and then they put mesh on my face to pull it back and hold it in place. I feel like Hannibal lector. They told me I get to keep it after I am done. I will find out on Monday how many treatmnts I will need. It will be 15-28 sessions. Sessions are M-F. So this means any where from 3-6 weeks I will be living in Florida. I am coming and going from the positive side of this. I am really trying to hold onto the positive - I will get a lot of writing done. I will get to meet some new people. As Catherine said - it is a strange sebatical. On the other hand, I am alone... in a small apartment... the nights will be long. I will appreciate all of your continued love and support!!!

I've changed

It's always good to get jolted back to who I am, or at least who I want to be. That's been this weekend. Catholics believe that lent is a time to get back to this place ... Lent started last week and I have heard several conversations lately about what people will be giving up. Lent for me will be the time to the place of who I really am ... who I was meant to be. (It's surprisingly similar to Ramadan which is a time Muslims try to purify themselves by practicing patience and kindness.)

So where did this jolt I am referring to come from?

I think getting slapped upside the head with the illness creates a chain reaction. First, I went through survival mode. What do I have to do next? Go to surgery. Go to another surgery. Find a doctor, prepare for chemo. Eat the right food. Find the right medicine to combat side effects.

Then, I climbed up the mountain to take a look at the other side and ask -- What if? I know this will surprise most of you, but the answer I found was that life would move on without me. I know you were thinking that the world would evaporate without me, but alas, I'm not that important.

And now .... finally .... it's time to see life changes. How can I put every effort into the life I've been given? This is the fun part. What "coincidence" is going to happen next? Coincidences in my life usually highlight a growth opportunity. It was a coincidence for example that this time in my life coincided with Starting a new job. it put things into prospective. This coincidence emphasized that I am on the right road; if I allow it to, life is about to change. Yeah yeah ... I hear ya ... sounds like hogwash. You could be right, but my gut says otherwise ... and I may have a flabby gut (at the moment), but it's pretty smart.

Another coincidence was that right before I was diagnosed, I forged new friendships with a group of woman (and one man) I work with. Lymphoma has actually strengthened these friendships. The verdict is still out, but I think I'm learning - how to worry less and help more? It's not brain surgery, but it takes just the right situation to move a speeding train. So ..... I'm a changed woman.

I'd tell you more about the coincidences in my life, but I'm already feeling like I'm metaphorically in my skivvies so that's all you get today ... (did you know skivvies was spelled with two v's?)

Radiation - update

We met with the radiation oncologist this week. It was a great experience. I really liked him - he is an odd duck. :) We (well he) decided that he needed more information before making the recommendations on whether or not to do radiation. I had more blood drawn yesterday - after 3 needle sticks made me realize AGAIN why I got the port. I will have PET scan on Monday. My last PET scan was on a Monday holiday as well. I guess I like to have these done to celebrate our country (October PET was Columbus day, Monday's PET is Presidents day). I have full confidence that the scan will be clear. That is my positive attitude coming out. There are many pros and cons to consider. Having radiation will drain my life. I know this should not be a consideration, but driving 50 miles every day for 3.5 weeks is draining and then having to sit there having radiation shot at me... then there are the side effects. Not being able to swallow, voice issues, heartburn, etc. I know I dealt with worse with chemo, but still.... AGAIN???!!! Then there are the long term problems: increased risk of breast and lung cancer as well as possiblity of infertility if the radiation "leaks" down to my pelvis. This scares me. I would like to think I have another 50 or 60 years left in me and I would like to think that I would be cancer free for the rest of those years. This is my biggest hurdle. Several people have given me the advice to fight the cancer I have rather than worrying about the cancer I may get in the future. I guess that is one way to think of it. Otherwise, I am feeling pretty good. I still get more tired than I used to, but the nausea is nearly gone and I am working pretty much full time again. I am putting all I can into what I do - it is still not 100% though. I have not started to grow hair yet... darn it... and I would really like my nose hairs back. My nose just drips and drips and drips. I promise I am not sick, but it sure sounds like it. Well that is the update for now. I will fill you in when I know more on the 27th.

Back to normal

But what is 'normal'? It's been so long since anything about life felt normal that I've kind of forgotten what it felt like. One thing (aside from my hair - more about that later!) that is getting back to normal is the way my brain makes associations with certain foods, places and even words. The words is the most interesting to me - anyone who has never had chemo/cancer would never think that ordinary words can take on such negative connotations that they can make you recoil in a gagging ball at the sheer mention of them. For example: Shots (went from fun tiny alcoholic beverages to pain inducing, self injectable little needles of hell), Saltwater (went from sea, holiday, swimming to nauseating 4 times daily mouth rinsing to try to rid that metal taste), flush (the function of a toilet? Nope, little syringes of saline that are pushed into your veins 27 times per hospital visit), dressing (the act of putting on clothes? or the bandages that cover the cuts, scars, and permanent tubes hanging from your arms soaking up the blood that permanently leaks due to blood thinners?), drip (probably one of the worst, no longer something that happens to a tap but instead the little drip drip drip you watch for hours on end willing the IV bag to empty into your veins faster so you can get rid of it), alcohol (this is NOT as much fun to have swabbed over your open wounds as it is to drink. And the smell. Bleugh), piece (everyday word, or wig?) rads (radiators? or radiation?), mass (catholic church service or tumour?) and it goes on and on and on.... But nearly 4 months on (WOW!) the negative connotations are giving way to the old meanings again. When something chemo-ey pops into my head now I smile to myself. The same thing happens with the very words 'cancer' and 'chemo'. These words become a strange badge of honour, something to be proud of. I did that. I always did wonder is it possible to finish chemo and be proud as opposed to afraid? I'm proud of what I achieved in the past months. I'm proud to be out the other side. I'm still afraid that I'll be catapulted back into that world, one more mutated cell is all it takes. I guess you can be scared and proud at the same time. I also have been back at work full time again. I don't feel any more tired than I would have before I got sick. Overall I was pretty surprised at how well I coped and also how it instantly felt like last year never happened. Life as usual. The world carries on. And for this I am very grateful. Hair picture anyone?! This is my current hair... No eyebrows and 12 eyelashes. This week. Who knows by next week.

The end is in sight

It's confirmed, my last (hopefully) chemo is tomorrow. Then the removal of the port. Then what?! What to do but wait. Wait to see if it grows back?! Meet this infamous Radiation Oncologist. So more waiting. They like to wait until I really feel good again then play to the what ifs. I just need a break. I need to be me. Productive. Chapter writing. Article writing. Teaching. Research startup. It will be great. Then a remission vacation with my family. I can't believe how weird it feels to think I'll have weeks with no hospital visits. Going from not being "sick" to this was quite a leap. I think the leap back is going to be even more traumatic. Being in pain from my ankle is sooo different than this. Yes my ankle may limit my life....but this has limited my living. I've said all along that as much as I wanted chemo to end (and BELIEVE ME I want it to end) I think the hardest part of all this is going to be the day they say 'OK go home, see you in a few months for a check up'. But....but....but.... what if I get a temperature? What if I feel a lump, bump, bruise?? Who do I get to check it if I'm not in the hospital every second day? Just how dangerous is a regular cold/flu? If I get one a month after chemo do I still need to go to the ER or do I just carry on as usual? How do I cope with the thoughts that I'm not doing anything to fight cancer? Surely I'm not expected to just go back to normal? Wait? Wait to hear it's gone? To hear it's not gone? To hear it's back? While I'm doing chemo I'm DOING something. As soon as I stop the ball is back in the tumor's court. I'm out of control. Ah who am I kidding, the ball was always in the tumor's court. I never had a single shred of control over this. So nothing's changed. After TOMORROW I'll have done all I can do in terms of frontline treatments. If it hasn't worked, I'm in trouble. If it has, for how long? Will this be the end? I know it's going to sound INSANE, but I feel like if that's the end then I got off too easy!! Don't get me wrong, it was far from easy, but I coped. Ok, enough. I'm going to assume it worked, enjoy my holiday(s) and not think about it. Haha....I wish!! One more night...one more round of sicknes...So close I can can smell it.... Ugh cant think of those smells. That I will not miss!!

We all have scars

I took this from another persons blog. I could not put it better... This experience has taught me that we ALL have scars. Some are obvious to the eye, and some are hidden, buried, and suppressed within. Life is truly a classroom, we are all being tested and tried. We truly cannot predict what trials we may face, but we can decide INSIDE how we will choose to take it, and what we will decide to do with it. I pray everyday that I am taking this experience and making it a thing of worth and beauty. I am choosing this day to find the VALUE in my scar, and in what this has taught me, my friends and family. Everyday I am humbled by the emails, texts, and phone calls I receive telling me how my adversity has influenced their life for the better. It truly makes me feel so blessed to be a positive part of so many peoples lives. GRATITUDE FILLS MY SOUL... Whether your scars are visible or not count them as a blessing! They are proof that you survived!

And then there was one...

I had chemo #7 today. The life of a chemo patient has taken a lot away, a lot more than I thought. But in 2 weeks I will be in true recovery.

Going to take a nap. Will write more later.... I can see the light.

Darn Nulasta

I can't remember anything.... But that is not the point of this blog. I am having to have Nupogen or Neulasta I can't remember which one.... But it sucks.

I guess I was blaming the pain on chemo.... But nope it is these darn white blood cell growing shots. Ugh!!

The only thing that has helped is pain killers and a bath. Bath with good smelling and feeling bath salts from the Keoghs and bubbles from the Barlogas. What a perfect blend. Thank you both.

I need to feel better.... Big week classes start (well they did last week but mine start Monday) and chemo #7.

Is I am going to lay in bed... Drink a glass of wine... Catch up on John Stwart and Scandal.

Oh and I blaming sucking at Words With Friends on chemo.... :)

Minor setback

I should be talking about how I finished chemo 7 today. However, my white blood cell count is too low. And not just low.... dangerously low and no "baby" cells to grow into full cells either. No chemo for me. I am sad that it is not done, but happy not to do it. I just want to be done.

I will be having shots to up my counts.....just a down kind of day. I am so tired and I guess low blood counts is why. Oh and Kyle is sick. So he s staying far away from me and sleeping in the guest room. So greatful for him.

So not much more to say.... Guess it is wait and hope my body bounces back.

Hair update

I thought it time to give a hair update....

I have begun to realize why we have hair - I know this is a new revelation. I walked outside the other day without a hat. It took me 0.02 seconds to run - actually run - back inside to get a hat. It could have also been that it was -4 degrees outside.

I have come to appreciate other body hair as well - take nose hair for example. Did you know that it keeps the snot in your nose? I remember when I had my septoplasty and I could all of the sudden breathe, but the I also realized I sneeze a lot more. Well without nose hairs I sneeze even more. So add this to the hiccup-burp (herps) and you get the snherps. And yes the all seem to happen at the same time - in the same order - sneeze, hiccup, burp. Round and round and round we go. Also my nose has become a faucet. It drips. Yes it is winter, but it is WAY worse.

I am having a love hate relationship with my head hair. It is growing - now is kinda scraggly. I need to get it cut. Who would have thought I needed a hair cut. But it is also thinner - much thinner. It sticks up in the wrong places... not long enough to spike it but not short enough to comb it down.

Also my eyebrows are finally giving up. I look like I have had a really really good (or bad) tweeze done. They are thin on the corners and nothing inbetween. I think they are all fighting to stay in.

My eyelashes are falling out as well. They seem to fall right into my eyes as well every time they fall out. I put on mascara to day and looked like a really bad stripper or transvestite with clumpy eyelashes. It was bad!! I am not sure what to think of this. The best part is that my mom bought me perminent eyeliner last Christmas - thank goodness! I still have the illusion of eyelashes. Yes it is just hair - but for some reason losing eyebrows and eyelashes make me feel like a cancer patient. At least with just the head hair I could cover it up... guess I am going to have to learn how to draw it on. However, please yell at me if I ever do this....