For The Newly Diagnosed

I can not take credit for the below writings.  It was written by Jeff Tomczek who was diagnosed with leukemia at the age of 27.  This column had found its way onto one of the online cancer groups Karen is a member of.  I thought it was absolutely brilliant in explaining the whole process and journey and is spot on for what we had and are going through.

FOR THE NEWLY DIAGNOSED

...............Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

Hyperbaric Treatment

After almost 30 sessions, Karen's hyperbaric treatment finally comes to an end this week.  It has certainly been a long 5 weeks of treatment.  Although not as physically taxing on Karen as the radiotherapy treatment, it still had its drawbacks in making it happen.  The reality of of spending 2 hours in the chamber everyday became quite the task.  Although only 2 hours, Karen lost a good 4 hours of her day as by the time you factored in travel time and the preparation required once she got to RAH, it really dominated her day.   So a huge thank you to family and friends and work for coming to the party again in helping us out with watching the boys when we were stuck and the flexibility of work hours to make it happen.  The burning question though, was it all worth it?

Yes, it was worth doing, but no, it did not have the desired results.  There has been no improvement at all.  So on that score it is disappointing, but not unexpected.  We certainly wont go away wondering if we hadn't tried this if it would have worked though.  So for any head and neck cancer patients considering this treatment if it is presented to you, I would say give it a go.  It was not successful for us, but that is not to say it would not be for you.  The hope was that it would alleviate some of the pain in the jaw and neck, help in increasing the production of saliva and general cell and tissue repair in the effected area.  Unfortunately none of this has happened.  In fact, (and this may just be coincidence), Karen has experience increased pain in the area since having had the treatment.  Prior to the start, she was able to manage her ongoing pain with over the counter pain killers.  However this is no longer proving to be enough and on bad days requires a harder approach to keep the pain at bay.  Like I said, it may just be coincidence, but my feeling, (based on no experience on the subject), is that perhaps the treatment has stirred things up in the area.

So what now?  We have an appointment tomorrow with Radiation and Oncology about the increased pain in the area.  The inability for Karen to eat any food without pain is a worry.  It is near on impossible to come up with a menu that doesn't have Karen grimacing at the table as she tries to eat.

Distressing for all of us, as food is such a big part of our lives and ongoing happiness.  A sad state of affairs when you can no longer enjoy chocolate!!  As we read somewhere on a post on Facebook this morning, "being happy shouldn't have to be a challenge".  It shouldn't be, but we still have a lot of days where it is.

All In A Days Work

Saturday morning, the youngest down for a nap, the older 2 busy gaming, Karen is at the RAH doing her Hyperbaric stuff and I have a spare few minutes to get a few things down with coffee in hand.
We are getting toward the end of this series of treatment for Karen.  She has just over a week to go.  At this stage, unfortunately there has been no change and no sign of any improvement in pain and saliva production.  The way things have gone for us in the last 9 months we really weren't expecting any change anyway.  Still we wont die wondering if we didn't give it a try.  Have included a photo of how Karen has been spending a good chunk of her day for the last month.

Intertwined with Karen's treatment, juggling care for kids while she does this and I am at work, we managed to still get in an ambulance trip and a stay at Woman's and Children's for our eldest son.  He has a severe allergy to tree nuts, with the Macadamia being his Kryptonite.  It has gotten to the point where it doesn't have to be ingested.  He reacts from it just being airborne.  So at the cash register of a Subway, our son had a white chocolate and macadamia cookie waved in his face by the staff member, thinking he was doing a good deed offering a complimentary cookie.  So within 15 minutes his eye was red and swollen, coughing and his throat starting to restrict.  As soon as it starts to effect the airways, its epipen time followed by the ambulance to hospital.   So after 4 hours of observation we got home.

Just when you think what else could go wrong, something usually does.  Needless to say we plan on keeping a low profile weekend and try and stay out of trouble.

Six Months On

My last post was on Christmas Eve last year and at that point I had decided not to continue blogging this journey anymore. We had got to the end of the radiotherapy treatment and I thought from here on in there is not too much more to say.  Also by this stage, both Karen and I were at a point where we just really wanted everything to stop and go back to how things were.  Karen was at the height of her side effects to the treatment, so our focus was really just about recovery and reclaiming what we could of our shattered little, frail lives.  So having pretty much forgotten about this blog, recently I had reason to have a look at it again and was astonished to see that I have had more than 5,000 page views and as recently as today.  I am under no delusions of grandeur that I have this many family or friends who look at this blog, so I suspect it may be other cancer patients and or family who are also going through the trauma of dealing with Adenoid Cystic Carcinoma (ACC).  It is a lonely journey and being such a rare cancer with very little information about it, it is only human nature at some point to seek out others who have travelled this path before.  So I have taken this juncture to bring family and friends up to date as to how we all are and hopefully at the same time educate you as to some of the misconceptions you may have.  For those dealing with ACC it may give you some insight into what to expect after treatment and the slow recovery process.

So first thing first.  Karen at this point as best we know is cancer free.  Some conjecture as to the time frame you put on it.  Some groups have you count from the time of diagnosis which would have her at 9 months cancer free, while others would have you count from the end of treatment, which would have Karen cancer free for 6 months.  Seems a trivial point, but there you go.  We know this because every 3 months Karen has alternating head, neck and chest CTI scans followed by chest x-rays.  She still sees the ENT surgeon every 3 months as well as Oncology every 3 months and also a huge priority on self examination.

So what are the side effects now and how bad are they?  From outward appearances, all would seem to be fine and that would be the understanding of many or our friends and work colleagues.  Karen's face has cleared up.  There is only a very faint discolouration around the area that was treated with radiotherapy.  On close inspection around the mouth and chin area, the skin appears to look quite old and has lost its elasticity much to Karen's disappointment.  The scar running along her neck where the tumour was taken out has healed up very nicely and is hardly noticeable unless pointed out.  So I can understand for those not in the "circle of trust" to think that it is all behind us now and everything is fine.  Inside the mouth is a different story.  On a daily basis, Karen still has considerable pain in the jaw and teeth.  The area is very tender and any knock or bump she receives around this area will have her in tears.  Codeine, although not taken everyday is still very much her friend, that is after going through the 20 questions at the chemist before they give it to us.  There also appears to be some permanent nerve damage.  The area along the scar line and above is numb.  Karen quite often complains of pins and needles sensation in the chin area.   Although her drooping lip which was sustained during the initial surgery and associated nerve damage has improved, she still has times particularly when she is tired when it droops.   Karen also still has little to no saliva.  It was hoped that with the one remaining saliva gland that was saved, that it might compensate for the missing others and produce more, but this has not been the case.  So artificial spits and gels and lubricants are used but they are only good for very short term relief.  Eating without the presence of saliva is also very problematic.  Food is not as easily broken down and just the very basic process of swallowing becomes difficult.  She also has difficulties opening her mouth wide enough to get food in the mouth, so a careful choice of foods to eat has become her norm.  After eating anything, her mouth will become red and painful and in some cases almost instant ulcers and rawness will follow.  So there are no foods that are without problems.  The obvious no go zone foods are anything remotely spicy and or acidic.   It has been a real challenge to come up with menus that she is able to eat and enjoy.  It is amazing just how many recipes have tomato in it, so a huge chunk of our regular week day meals are no more.  On a final note about side effects and I am sure there are many more that I have missed, just the very act of kissing has been compromised.  Given her mouth  area is so sore, a peck on the lips is about the extent of it.  So the level of intimacy that Karen and I shared before has certainly been downsized.  Enough said on that subject.

For me, the biggest hurdle to get over has been a mental one.  (Some may say that has always been the case).  When we first found out that Karen was cancer free, it was more a sigh of relief rather than any jubilation.  It is very hard to get really excited about the future knowing the type of cancer Karen had and the outcomes based on the statistics available.  So as every 3 month check approaches a dark cloud certainly descends as we contemplate all the "what if" scenarios.  It is all consuming.  We are told this process gets easier with time, but we are yet to experience that ourselves.  So as far as feeling positive goes, that is a real battle and something that at the moment is not the default setting.  I take some comfort in that even the Cancer Council has said it is okay to feel that way.  It went further on to say that there is absolutely no evidence to support that being positive has any outcome at all on treating cancer or whether it will return.  Having said that though, obviously it is not the way you want to go through life either.  We have both seen councillors individually, which has been good.  Their advice has very much been focusing on living for the now.  Making the most of each situation now and not thinking about what tomorrow will hold.

Since the treatment finished, Karen has also sought out and joined several Facebook groups.  An overseas head and neck cancer group and also an Australian group specific to ACC.  They have provided Karen with a sense of knowing she is not alone and others are going through the same things as she is and feeling the same way.  As much as I have been with Karen every step of the way as we have dealt with this, I really have no idea of what she has been through.  Having said this and I certainly believe there is a place for these sort of groups, I word of caution.  They do tend to be a bit on the negative side.  As one member had written, all the "well people" are not on the web and involved in facebooking with these groups as they are too busy enjoying life.  So in my opinion they are good in moderation, but do have the tendency to bring you down further when you may already be already struggling.  My thoughts only and if you find comfort in those groups, then that's fantastic.

Where to from here?  With Karen's last check up, we were told that the side effects that she is experiencing now will not improve.  At 6 months this is what it will be for the rest of her life.  Given she is still young and the quality of life has been compromised substantially, they have referred Karen onto Hyperbaric therapy.  There has been some success in the United States with head and neck cancer patients.  The decompression and hyperbaric treatment has shown some improvement in restoring tissue  that was damaged and or killed by the radiation.  The idea being that the very oxygenated blood will improve circulation and possibly reduce pain and increase saliva.  So Karen is half way through this therapy.  It involves going into Royal Adelaide Hospital 6 days a week and spending 2 hours in the chamber over 30 sessions.  If there is to be any improvement, it should start showing itself between session 20 and 30.  Of the cancer patients that have undergone this treatment, approximately 50% have had some degree of improvement.  So we shall see.

This next paragraph is a difficult one for me to write, but one I feel I need to write.  No doubt it may disappoint my Christian friends, but I have been honest with all my other writings and would not want to just masquerade over my faith and where I am at.  I feel like such an impostor, especially when another Christian brother or sister comments how we have been such an inspiration or encouragement to them by the way we have handled all of this.  Nothing could be further from the truth.  I have drawn very little comfort from God during the period and have very much felt we have done it alone.  When you are really stretched and you look at the very real prospect of life without your partner and mother to your children, I have found it a real struggle to find the blessings in this situation and even harder to praise the God who has allowed this to happen.  The notion that it is all for a reason and we don't see the big picture stuff gives me no solace.  I know as Christians we are not exempt from the hardships of life.  In fact we deal with all the tragedies of life like everybody else, but perhaps with an extra sprinkling of persecution and guilt for good measure.  So my Christian walk of late has been more of a stagger.  Not the easiest thing to come out and say in Christian circles, but unless you have walked in our shoes you will not fully understand.  So having said all that, I still go to church, but not regularly. I still believe in God, but just feel the need for some time and space to help the wounds heal.  At the moment I have the head knowledge of who God is but lack the heart relationship.

Apologies for the long winded update, rant and rave.  A lot to cover over 6 months.  I hope for those who read this, you may come away with a better understanding of what we are going through and if this is your journey as well, I sincerely wish you and your family all the best.

One final comment.  A shameless and blatant plug for my wife's business. In which she has thrown herself and found great comfort in as she's journeyed through her time of cancer and treatment. She says it is relaxing, meditative, and takes her mind away from what she's dealing with each day. She is also using it to benefit cancer research, so maybe a blessing there after all. Karen's Cookie Jar. Please check out and support her facebook page at https://www.facebook.com/karenscookiejar
- specialising in bespoke and artisan cookies with part proceeds going to Cancer Research.  The cookies that Look Good, Taste Good and Do Good.
For further enquires or orders, contact Karen at either her facebook page or email karenscookiejar@live.com