Clinical Trial so far

So, an update on how the clinical trial is going so far. After a long delay, I finally got the pre-trial screening on April 5th. Rich went and kept me company through a CT scan, a meeting with doc, the clinical trial planner and the nurses, an EKG, and LOTS of blood tests.  We counted - they drew 24 tubes of blood!

After that, I waited, impatiently, for notice that the trial was ready for me to start.  It finally started on the 19th.  And the delay was merely preparation for the long day that was in store for me. Jen picked me up about 6:15 AM, and with a quick stop for breakfast, and traffic, we were fifteen minute late for the 7:30 appointment. We started the day with taking my vitals.  My blood pressure was high.  Gee, I wonder why!  Then, they had trouble getting my IVs put in, then we waited an hour for lab results, talked to the doctor and clinical trial planner, waited for the pharmacy to mix the IV, order the free lunches (bonus!), took two hours to for the drug to infuse, take my vitals and blood samples LOTS of times.  Through all of this, Jen and I entertained ourselves watching cartoons on TV, playing online games, solving some brainteasers, and general time wasters.  At about 2:00, they said I'd be there until 6:30 (!) so we knew to settle in for the long hall.  When they said at about 3:45 that the next test was not until 6:30, we decided to go on a nice long walk to stretch our legs.  After the walk, we went back for more time-wasting, and the last blood draw and vitals check.  Dinner on the way home, and we finally pulled up to my house at about 8:20 PM.  

The good news is the only weird side-effect I noticed was a strange taste during the IV infusion that went away shortly after the IV stopped.  Rich and I went back for another blood draw this morning, and aside from a lack of sleep (I think due to nervousness about the trial) I feel great. 

Now, I just have to keep showing up for blood tests on various days, and the drug infusion every other Tuesday, and wait for my next CT scan June 13th, and the results on June 14th, while I try not to get my hopes up for a miracle. Thanks for reading! 

A lot of changes - and it's a good thing!

Wow, it has been a while since I updated this blog.  Since I only update it when I have cancer news, it won't surprise you to know that I have news on that front.

But first, the really good news. Since my last blog update, I have met a truly wonderful man who seems to take most of the cancer stuff (and my over thinking it) in stride. He keeps me calm when I am worried, and can help me laugh about anything.  I can't wait until we are married! (July 9th!)  I could go on and on about his wonderful qualities, but you'd probably be bored.  :)

Ok, now onto the cancer stuff - I was offered, and accepted, a spot in a clinical trial.  Before I get the drug, I have to get (and pass) a series of blood tests and scans to make sure that I am not bringing any unnecessary risks or variables into their experiment.  If I pass, I will get the drug by infusion (IV) every other week for eight weeks.  After the first eight weeks, I'll have another set of scans to see if the drug is having any effect.  In the meantime, I'll have lots of blood tests to check things like how much drug is in my system, and how my immune system is reacting to the drug.

The drug is an immune booster, that will, in theory, make my T-cells more active and more able to recognize the cancer as foreign and (hopefully) attack it. (For any of my immunology-versed friends, it is an OX40 - (CD134) agonist.)  The side-effects for this class of drug are generally mild, with fatigue being the biggest one.

Any clinical trial comes with risk, and absolutely no guarantee that it will help me, or anyone who tries the drug.  I accepted the spot, not because I am feeling worse, or because I think it will be a miracle cure, but because I hope that this trial will be a small step in the search for a good treatment for ACC.

I will try to keep the blog updated with dates, how the trial is going, and how I am feeling. Thanks in advance for your prayers, happy thoughts, and support as I try this path.

Rich and I enjoying the Christmas Lights

Not today and not tomorrow.

Many of you have probably heard my news from a few weeks ago.  I started having some pain in my right side when I used my right arm to move something heavy or moved a certain way.  At first I thought maybe it was a pulled muscle or something that would heal, but after a few of weeks of waiting for it to heal, it only got worse.  So, I persisted in asking doctors questions until I got some answers, and eventually, after a bone scan, and reviewing my previous CT scan, it became apparent that I did have bone metastases in my ribs, and that is what was causing my pain.  The pain wasn't terrible, but it was enough to make me avoid certain movements and to take a break from certain points of my job where heavy lifting is a necessity for the safety of myself and others. 

The good news with all of this is that the radiation oncologist was able to set up a plan with just one radiation treatment that had a good chance of eliminating or at least minimizing the pain with this treatment.  I had the treatment October 24th, and it seems to be working.  The side effects were minimal - I was tired for a few days, and achy for a few more days after that.  

In fact, I was feeling good enough the Monday to do a deeper than usual cleaning of my house - window cleaning, vacuuming, etc. It turns out this was not a good idea.... I noticed I was a little sore that day, but the next morning... holy cow! I think I have been avoiding using certain muscles, and that combined with the issues I still have in my ribs... Tuesday morning was rough, but by this morning, things had calmed down to "normal" for me.  On a side note, anybody want to come over and help me wash the rest of my windows? ;) 

I'm not going to lie... the past month has been rough. I've gotten used to the fact that I was diagnosed with cancer. I've gotten  (mostly) used to the doctor's appointments, and the scans.  I've gotten used to being told I have lung mets.  I've even gotten used to the idea that this cancer will probably kill me some day (hopefully far, far in the future). What keeps me up at night is the idea that this cancer will slowly take over my body and my ability to do what I want, as the doctors, my family and friends, and I, watch, helpless to stop it.  And, I am afraid that these bone mets, this pain, and the things they are making me avoid are just the beginning of a path that I don't want to take. 

But, I have no choice here... so, I will continue forward as best I can.  As I have told too many friends, "Cancer sucks, and it will kill too many of us, but it won't kill me today, and it won't kill me tomorrow, so I will make the best of those days, and worry about the days after that only when I have to." 

Surviving parotid radiation treatments

Shortly after I finished radiation, I typed up a list of tips and tricks to help anyone else going through the same thing.  I've shared it with quite a few groups, and I just realized that I never posted it here. It may also serve to give you a glimpse of what radiation was like for me.  If it helps you, please leave a comment below! Thanks!

for skin - eucerin aquaphore or eucerin calming cream are wonderful!

for dry mouth/thick saliva - carry a bottle of water, drink a ton, even when you don't want to.  some people like biotene mouthwash - I didn't.  Sugar-free mint gum helped a lot for the first half of treatment.

for teeth - if you haven't already visit a dentist and tell them what is going on - they'll probably give you fluoride trays. Brush and floss often (after every meal) - but you'll probably want to switch out to an alcohol free mouthwash and extra soft toothbrush. About half-way through, I switched to the biotene low-foam toothpaste - good stuff, for when spitting is WAAY more work then it should be.

for sore mouth/throat - rinse with salt water or baking soda in water 4-5 x day. I also found rinsing (and swallowing the oil) with olive oil (spring some $$ on the good stuff) 4 or 5  times a day really helped for a while, until the olive oil started making my stomach upset.  The mint gum helped with this too. Once you're mouth gets sore, your doc may give you "magic mouthwash" that will numb it so you can eat more normally - just be careful not to bite your tongue ;)

For eating - Eat anything you want pre-rad!!! Don't worry about a couple extra lbs. (Nutrition is important too, though!) Lots of protein and a nutritious diet in the first couple of weeks of radiation can help with energy, and minimizing side-effects.   At first, just the taste issues made me eat less - I found melons, eggs, vanilla ice cream, fried foods, and bread to be not offensive, but you'll have to try stuff and figure out what tastes good to you. Once my mouth started getting really sore and swollen, I found I wanted to eat less and less. I eventually switched over to mostly vanilla ensure and scrambled eggs. Taking really small bites of food helped me eat more comfortably.   My doctor (though others have other opinions) told me not take vitamins, and to avoid acidic foods (pop, some juice, tomatoes, citrus, etc). (Vitamins can lessen the side-effects of radiation, but some think they might also lessen the radiations effectiveness.  Apparently, the acidic foods slightly damage the lining of your mouth when you eat them. Normally, not  a big deal, but with radiation, it can't heal.) Also, you should probably avoid alcohol during head & neck radiation. 

For the tiredness - Not much will help that I know of. Get as much sleep as you can. Some people say light exercise helps. I found I had more energy on mondays and tuesdays through the rad cycle, so figure out what days you have more energy and plan stuff for those days.  And I had more energy on the days when I got up and did something, rather then just laying around, but some days I needed to just lay around. Get help around the house- maybe a friend can go grocery shopping once a week, or someone can come do laundry, or fix a meal.   I hope you like daytime tv ;) Netflix is a good option, too!

Muscle stiffness - stretch you neck and jaw (gently!!!!) often - whenever you think of it. do a fake yawn until you get to a real yawn 5 or 6 or more times a day. Keep this up until weeks or months after radiation ends. (I still have stiffness - this helps)

For the actual treatments - Take relaxing music to listen to. I pictured myself on a beach, or laying in my favorite outdoor spot, rather than in the radiation room. Some people found counting the clicks helped pass the time, and reminded them how much time was left (same number of clicks each time).  They'll give you a foam ring to hold, but at least one person I know took in one of his kids stuffed animals to hold onto (instead of the ring), so that he (and his kids) felt like they were part of the process. He said it also reminded him why he was doing this. 

In general - talk to your doctor about side effects, what you've got and what you're worried about.  In most cases, they'll be able to recommend something to help.  My doc had me visit a swallowing specialist prior to starting treatment - they gave me exercises that helped keep me swallowing normally, i think. 

For the future - ask your doc(s) about long term side-effects, and things to keep an eye, out for including trismus, avoiding certain osteoperosis drugs and certain dental procedures, and the VERY slim possibility of necrosis. 

I worked at least part time through most of the treatment, but I also slept about 12-14 hours a night, and spent several more hours on the couch resting through most of it. Radiation SUCKS and I won't try to tell you otherwise, but I found it do-able.  Remember why you are doing it, and that the worst of the side-effects are temporary. 

I really hope this list helps someone!  It's not an exhaustive list, but I've tried to put down every thing I can remember.  If you have questions or comments, I'd be happy to listen.

4 years!

On August 5th, it will be exactly 4 years since I was diagnosed with cancer.  I hate these anniversaries, but I can't avoid thinking about them. When I was first diagnosed, like so many others, one of the first things I did was "google" adenoid cystic carcinoma, and, as with most types of cancer, I found 5-year, 10-year, and even 15-year survival statistics for various situations. Survival depends of a lot different variables, but as I get closer to the first of those marks, it gets scary....

I've lost many friends and acquaintances to cancer, and specifically to ACC, over the past four years.  The statistics can't predict who will live 20+ years from their initial diagnosis, and who will live less than a year.  I've had friends do both.

I've told myself and others that the statistics don't mean much.  Treatments are changing every year, the statistic are based on people who were diagnosed decades ago, and I am younger and generally in better health than most people when they were diagnosed. But it's still scary.

Three years ago, I wrote that victory no longer meant being cancer-free, but instead it meant living life well despite having cancer. So, despite being anxious about what the future will hold, I continue to live life as best I can, learning, laughing, enjoying time with family and friends.  I hope you are doing the same!

Cancer is hard

A couple of months ago, I and several others had the misfortune of being involved in an incredibly stressful short-term situation.  (If you don't know what it was, that's ok.  For the purpose of this blog, it isn't important, and I am fine now.)  During the follow up to this situation, we were provided with counseling that included a list of "side-effects" that I might expect to experience as a result of the traumatic stress.

Imagine my surprise when they went down the list, and I heard listed nearly every mental and physical effect that I felt after my cancer diagnosis and when I found out the cancer was back.  Everything from muscle cramps and nausea to feeling disconnected and memory issues. Additionally, physically, I repeated many of the same uncomfortable side-effects after the second event that I had after my cancer diagnosis; trouble sleeping and, well, ... let's just say my body takes the phrase "scare the crap out of" very literally. I had originally blamed many of those short-term physical effects on anesthesia or surgery.  The long term ones, like reliving memories, intrusive thoughts, and finding it hard to cope with various facets of daily life were more difficult to explain away, but I tried blaming "radiation brain."   It is similar to the more popular "chemo-brain" and suitable for those of us who haven't had chemo.

I can't say for sure, but if I had been provided with that same list after my diagnosis, maybe it would have been easier. Just maybe I would have known that what my mind and body were doing were not unexpected, and even if they weren't "normal" to me, they weren't totally out-of-bounds, and I wasn't loosing my mind.

Since this experience a couple of months ago, I have mentioned it to several other cancer survivors and they have confirmed that they have either had some of these symptoms or been diagnosed/treated for PTSD or other anxieties. With a bit of research, I found that, according to wikipedia, "In young adult cancer survivors, one small study found that 20% of participants met the full clinical diagnosis of post-traumatic stress disorder (PTSD), and 45% to 95% displayed at least one symptom of PTSD.^[14]"

I had to go back and read that again.  I even went and read the referenced article.(The internet is amazing!) - Depending on the criteria, 45 to 95%  of people in my age group who were diagnosed with cancer also had symptoms of PTSD!  And yet, no one mentioned to me that it was even a possibility, or how to deal with it if it happened.  Until recently, my doctors barely seemed to ask how I was coping with a cancer diagnosis, and  they didn't offer much in the way of non-medical support.

To be clear, I don't think that what I am dealing with qualifies as PTSD, and most of my symptoms have lessened or disappeared.  I still have anxiety around scans and doctor's appointments, and I know that I will have to deal with more when I eventually have to face worsening health and treatment.  For now, though, life is good, and I think I am handling the whole thing, if not really well, then well enough.

So, I guess my point is that cancer (and life) is hard, and stressful, and everyone copes in their own way.  Some ways are better than others - the counseling usually lists drinking and illegal drugs as particularly bad ways to cope.  Whether you've been diagnosed with cancer or gone through some other traumatic event, life can be hard! If you need help, please ask for it.  Find someone (a friend, doctor, pastor, counselor, etc.) to talk to.  If they don't listen, find someone else.  Don't give up; it is too important.

One last thing, I don't trust myself to remember the whole list of side-effects and coping mechanisms that were listed that day, so I will include several links below that will have descriptions of PTSD and coping mechanisms.

the links I promised:

WebMD's description of PTSD - check out their other links about PTSD, too. Lots of good info.
psychcentral.com's "official" definition of PTSD
cancer.net's description of PTSD in cancer patients
huffington post's article about PTSD and cancer.
wikipedia article I quoted above - for "cancer survivor"

Trying to do two things at once.

I originally wrote this blog post several months ago, and decided not to share it at that time. But, now with a little time and distance, I think it is okay to share these experiences of trying to live with the duality of having cancer and living life well. (also, published with thank to my sister for letting spoil and adore her wonderful kids!)

In the past 24 hours, I've had two distinct but related experiences. Last night, I found out that an older friend was admitted to hospital. She has been dealing with head and neck cancer for the past two decades, and has been trying to live her life to the fullest despite the nearly constant recent barrage of difficult medical procedures and bad news. Her family and everyone around her is struggling to deal with the both the physical and emotional pain and possibility of loss. I don't know what the future will hold for her, but I know it will not be an easy path.

This morning, I saw another friends new baby. A beautiful, tiny new life, who is so wanted and loved, and so full of possibility. The new mom and dad looked lovely and happy. Everyone around the new family beamed while offering smiles, congratulations and other joyful exclamations.

I wish so badly that my life was closer to that of my second friend, and it just fills me with such great longing to admit that I won't have my own child. Instead, I, now 34 years old, am also dealing with metastatic cancer for which there is no cure. There is not even a great treatment to stem the slow but relentless uncontrolled cell growth. Physically speaking, yes, I could still bear a child, but with no significant other, and a drastically shortened life expectancy, it is something that I know I will not do.

I wish that I could snap my fingers and go back to a cancer-free life when the sight of someone's newborn didn't cause deeply mixed emotions and red watery eyes that really can't pass for allergies. I wish I could have a supportive husband who would be father to my children. I wish my life would bring more joy and hope for the future instead of forcing my friends and family to deal with uncomfortable realities of cancer, pain, and mortality. I wish my life focused more on my plans for next weekend than my next doctor's appointments. I wish I really believed the doctor's assurances that this pain in my back was totally unrelated the metastases in my lungs. (edit - the pain in my back was totally unrelated to cancer!)
It is pointless to wish for things that cannot be. I have no choice but to deal with reality, and to do the best I can with what I have. So, I will try to be there for both of my friends, and I will try keep living life the best I can for as long as I can, and stop to deal with physical issues as I need to. I just wish it wasn't so painfully hard.

The holidays are hard for the same reasons - the focus on children in general and seeing all of my extended family with all of their amazingly beautiful families makes my status as a "single" hard, and a woman who had been fighting this insidious disease for over 20 years passed away on Christmas Day.  She was 41, and an inspiration to so many to really live well despite this disease.  But, I am also doing better focusing on joy, laughing with family and friends.  I think my New Year's Resolution will be to continue my focus on enjoying today, because it does no good to worry about things I cannot control. - I am sure it won't stop me from worrying, but I will try to remember the lesson from my back healing itself as a reminder that not everything is a direct result of cancer. 

 I wish you all a wonderful, happy, and healthy 2014!