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The Beginning

Tomorrow is my Dad’s surgery.  I have no idea of the time, we find that out between 4 and 7pm tonight.  By then I will hopefully be on the road.  I have no ideal what to expect as the journey begins tomorrow.  I hate the unknown.  I would be lying if I were to say I wasn’t scared.  I am.

I am sure my Dad is more scared than I am.  He has never spent more than 8 hours in a hospital.  He has never had major surgery.  He is the one with cancer.

I am staying upbeat, channeling all the positive mojo I can and hoping for the best results.  I will be away from the computer for the better part of the next 2 weeks at the very least, as soon as I can get back online I will update this blog.

Chemotherapy, surgery, chemotherapy, radiation.  This is the new plan of attack against the rectal cancer that my Dad has now been diagnosed with.

I know I have been avoiding adding to this blog lately.  For this I apologize.  I am mad.  I am upset beyond words.  I am at a loss as to why someone would go through what my Dad has just gone through in his previous brush with cancer that turned out to be benign.  Only to have him be told 2 weeks later that he now has another fight ahead of him in the form of rectal cancer.  However, there is one thing that I realized earlier today while driving home.  This is NOT about me and how I feel, this is about him and his health.  This is about his fight, his journey and what lies ahead for him. I need to step up to the plate and remain dedicated to him, my family and this journey.

With that being said here is where we stand after his consult yesterday with his oncologist.  Yes, he has rectal cancer.  Yes, the tumor is a decent size.  Yes, he needs to have one more special rectal MRI/ultra sound test before his treatment begins, and finally no, they don’t know what stage the cancer is yet until those test results come back.  That test will determine how far into the wall the tumor has grown and if the lymph nodes have been effected.

The plan of attack for this cancer: chemotherapy, surgery, chemotherapy and radiation.  In that order.  Right now my plan of attack is to be there 100% to help my Dad and Mom through this journey.  I know there is no way my Mom will be able to handle all this on her own.  Who would be?  She is going to need support in more ways than one.    That being said, they live alone in another state away from where I do, arrangements will need to be made to make sure that I take care of them as well as my own family here in this state.  I will do what needs to be done to help my Father fight this disease and once again be cancer free.

While I have helped my mother in law when she bravely fought her lung cancer when she had her treatments, a battle I’m very sad to say she lost.  Her treatment was radiation and not chemotherapy.  I know what to expect with radiation treatment, I have no clue what to expect with chemotherapy.  If any of my readers have dealt with chemotherapy in any way and have some advice for me I would greatly appreciate it.  I want to make sure I make this difficult situation as easy and as comfortable for my Dad as I can.

As many of you know by now and I’m sure some of you do not,  we received a miracle.  After our consult at the Cancer Center, they called me and requested more slides and information from my Father’s surgeon.  The afternoon after they received that information the radiologist oncologist called to tell me that my Dad’s cancer was in fact benign.

*Pause*

*Pause*

Excuse me could you repeat that again?  Yes it was true they found he was misdiagnosed.  His cancer was in fact benign.  Although he will have a cheek that will forever show the signs of a skin graft from his surgery, cancer was no longer a threat to him.  Relief doesn’t begin to cover how we all felt.  We were ecstatic.  Miracles do happen and prayers do get answered.

Forgive me for not posting this news sooner.  Earlier this afternoon while on the phone with my boss, we began to talk about my Father and how amazing the whole situation was, I told my boss “I’m sorry I didn’t let you know sooner but honestly I’m still trying to process the whole experience and what I am supposed to take away from it.”  My boss totally understood what I meant.  After telling a few friends immediately after the news I kind of clammed up about the whole thing.  I’m not sure why.  I guess I just needed more time to think about it.

Fast forward to now.  Today.  As I stated in this earlier post, when my Dad came up here to visit me so I could take him to the cancer center told me he could not eat lately.  So after the cancer was behind us, he scheduled a colonoscopy.  Today was the colonoscopy.  Late this afternoon I talked to my Mom to see how my Dad made out.  She relayed to me that they found a tumor and the doctor who performed the colonoscopy was almost positive it was cancerous.

Devastated.  There were no other words.  D E V A S T A T E D.

I couldn’t believe what I was hearing.  As sure I said to the doctor two weeks earlier, I had repeated again this afternoon, “Can you repeat that for me again?”  That is where we are today.  Again with cancer.  Next Thursday he has his first appointment with the oncologist in the city near where my parents live.  Before that consult there are many tests he will have.  I can’t even remember all the tests my Mom told me on the phone.  I was shocked and numb.  So he will have all the tests done and I will travel down there to be with both my Mom and Dad as they start out on this unfortunate familiar road again, and we meet with the oncologist.  I have no doubt that my Father feels beaten.  It’s my job to help him not to feel that way and let him know that he fought off a very rare cancer and that he can do it again.  Will this be easy?  Absolutely not.  One thing I know, he won’t do it alone.  We will be there 110% for him no matter what the journey has in store for us.

My commitment has never wavered and never stopped.  I will continue to try to make a difference and I will continue to fight for an end to this terrible disease.

Just as quickly as my Dads  journey came to an end, it has started back up again.

The Long Awaited Journey

On Wednesday morning we got up very early and we were on the road by 6am.  My Father, my Mother and myself.  We were finally on our long awaited journey.  We were on our way to the radiology oncologist consult at the cancer center in New Jersey.  The drive was probably about 1 1/2 hour long and our appointment was at 8:30 but I knew my Dad was nervous and I wanted him to be extra early so that he wouldn’t have more stress and could be there and just settle in.

As I stated in my last post he didn’t look well and hadn’t been eating right, so I am becoming even more concerned about him.  We had all our eggs in one basket with this consult, we needed this, we were depending on this, we couldn’t move forward without it.

We were of course very early so we had a good hour to sit and relax.  We received a pre-packet with a ton of forms to fill out before even entering the building, but there was more waiting for him, so that kept his mind busy for a while and helped us pass the time.  We were called into the doctors office right on time.  The doctor’s nurse asked my Dad a lot of very important health questions, and then the doctor came in.  She went over his medical history, did a full examination and then sat down to talk to us.  She said what we had known and heard already, words like…very rare, MAC, sweat glands,  not a lot of case  history.  She had told us that she believed he might have success with radiation therapy.  There is not enough evidence (case study) to substantiate it not being successful.  She also said that after he does the course of radiation therapy that it is likely a follow up surgery will  be needed to make sure the radiation therapy did indeed get the cancer.  She explained in great length and detail about the side effects and what to expect with the radiation treatments.    There was a lot of information to take in.

The doctor told us that she believed the cancer is not deep but wide, which in her words is a good thing because it is easier to treat. This has to do with where the cancer is (in his cheek) there is not a lot of wiggle room so to speak which traditionally makes treatment more difficult.  We were very happy to hear that.  My Dad was very happy to hear that news.  Rightly so the re-constructive surgery he has already had done on his cheek has effected him emotionally.  This news he later told me was the best news of the day for him.  That made me happy as well.  Any one word, any one sentence, that made him happy, made me happy.

She said that she is going to take all her information, what she thinks the course of action for my Father should be, and bring it to the doctor conference.  She explained that the doctor conference is when they all sit down together and discuss patients to bring together all their experience and knowledge to give the patient the best possible treatments available.  We have the results of that conference with the other top notch doctors at the cancer center within 7-10 days.

7-10 days and our journey will have purpose.  7-10 days and our journey will once again begin again.  7-10 days and we will have a definite course of action.

After leaving the cancer center we went and enjoyed lunch at a local diner.  We sat down quiet for a while, then began to dissect the morning consult.  The result left us with far more answers this time than questions.  My Dad was very happy.  He had a ray of hope now.  I believe his mind had been beginning to wander off a bit the past few weeks.  I believe that it has been effecting him and his diet.  In fact I know it has, I’ve witnessed it first hand.   It is very hard having your parent go through such a difficult time and not being able to just walk across the room and see how he is doing, to just go across the street and knock on the door just to see how he is doing.  It was indeed nice having both my parents up here with us if only for two days.  I believe it did them good to get away for even the little while they did.  You know, sometimes a change of scenery is good for the soul.  I also believe that having a definitive course of action laid out in front of you from top to bottom works wonders for the easing of your mind.

….and so with this the journey goes forward.

Dinner with Dad

Tonight I had dinner with my Dad, well my Mom and my Dad to be exact.  My parents have made the trip up to where I live so that I can take them tomorrow to the consult with the radiology oncologist at the Cancer Center in New Jersey.

I have not seen either of my parents since the last consultation we had with my Dad’s radiologist.  When he came into my house this afternoon, he looked tired.  I wasn’t sure how I expected him to look.   He  kept asking me  what plans was I making for dinner, to please not cook and let’s go out.  When my parents come up I always want to make a big meal, because I figure it’s the least I can do while they are here, they always go all out for me when I come home, so I like to do the same when they are here.  The first thing my Dad said after coming through the door was about the meal and where were we going.  I said that I had dinner already going and we were eating here.  His face dropped.  I knew something else was going on.  He then told me he hasn’t been able to eat that well at all.  Mostly just rice and crackers lately.  I am very worried.  I tried not to make too much of the situation because I know we are going for answers tomorrow and now that will be a question that I have on my list for the doctor.

I am worried about my Dad, his physical well being, and his emotional well being.  I hope I have enough strength for him tomorrow and for my Mom.  I hope that he finds a bit of hope in whatever he is going to hear tomorrow.  We are set to leave off in uncharted waters, I just hope he is not let down.  I hope that even if he doesn’t hear the words he is looking for, that I can be strong enough for him to lean on and help him move on to the next phase, to conquer what we need to. Together.

Your Existence Gives Me Hope

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You can view all of my photographs here.

Truer words have not been spoken.

I am grateful for everyone who has stopped by and taken a moment to maybe read a post or two, click a link, or used your mouse for the good of cancer charity.  I consider this the little blog that could.  Together with your help we are closing in on 100 hours of cancer research funded in less than two weeks of this site being online.  I am extremely pleased by that fact alone.

However, my work does not rest, or stop, even for a minute there.  I will continue to find ways to help people and help put an end to this terrible disease.  I hope that you continue along for the rest of the journey.  Thanks to all of you.

As you may or may not know I am working on a post dealing with Cancer and Social Media.  I have received several responses through my twitter announcements (thank you) but I am in search of  a few more before I finish the post.  If you or someone you know if dealing with cancer and has used Social Media in any way to help please let me know how it has helped them or you.  You may drop your answer in the comments.  I appreciate all the feedback I have received.  Thank you.

Yesterday I experienced a few bumps in the road.  I know they are to be expected.  When you bank on every moment counting the bumps however are hard to take. As I had stated briefly before the other day in my post “choices” ,  my Father did a complete 360 over the weekend and decided to go see a Radiology Oncologist instead of the Surgical Oncologist for the second opinion.  After a few phone conversations I told him “if that if what you want to do that is what we will do.”  He is the one fighting the disease he needs to feel comfortable with his decisions and the direction he wants to take in his battle.

Monday morning I immediately got on the phone and talked to the Cancer Center he had the appointment with and got the ball rolling on changing the appointment to the radiology oncologist, the Cancer Center that I am dealing with is and has been fantastic.  I can not utter one negative word about them. They have absolutely gone above and beyond what I could have ever expected.  I managed to get everything in order in one phone call to the Center, with only one small problem.  My Fathers pathology slides which were supposed to be in route from the hospital he had the surgery done to the Cancer Center in NYC, were lost.  LOST. The Cancer Center could not track them anywhere and they had not arrived in New York.

Having heard this I immediately got back on the phone to the hospital in New Jersey.  I refuse to be mean but I can honestly say that the only decent uncondescending conversation I had with this hospital was with the initial information station I dealt with.  I was given to the wrong department first who seemed to have better things to do with their time than to help me, then when they did finally patch me through to the right department no one answered the phone.  Realizing it was 12:30 prime lunch time I decided to leave a voice mail.  By the time 3pm rolled around I realized that no one  had  returned my SOS call.  I called the hospital back and finally got a person on the other end of the phone in the RIGHT department.  I explained my dilemma how we had an appointment NEXT Wednesday and the slides could not be tracked and had not arrived in NYC yet.  The person I talked to was again what I would consider to be very disrespectful, didn’t seem to want to be bothered, and then put me on hold.  Coming off of hold about 3 minutes later all that was said was “They are in New York…..okay….”  To which I replied “Oh that’s great thank you.”   Then I heard ‘click’.   I realize that this is just one small problem in the long road ahead.   However, lining up these appointments and making sure all the reports, films, and slides, which by the way are all coming from different offices, is a bit overwhelming, and a bit of a logistical nightmare.  Especially for someone like myself who is not used to arranging appointments like this, where every piece of information is another piece to the puzzle and completely needs to be there.  Making these calls are very stressful due to the mere fact that I don’t know all the medical terms they are using.   I don’t know which doctor has what report, and I am tentative trying to make sure every I is dotted and t is crossed.  I believe that if you are representing any business, or even yourself, you should be aware that a lot can be told by a voice on the other end of the phone.  When you answer that phone you set the tone.  It takes nothing more to be kind, patient and courteous to the person you are speaking with and it goes a very long way.

The bottom line is I am happy that the slides had indeed arrived and that all the pieces to the puzzle are in place and we will start on another leg of our journey on Wednesday.  I have no expectations other than hoping we receive some direction as to how my Dad can begin to deal with this rare form of  MAC  from a medical standpoint.  Which in turn I hope will help him to deal with it emotionally as well.

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