The Big C

A journey through Stage Four Cancer

The High Cost of Cancer

This will be a quick update.  It shouldn’t be a surprise to learn that my cancer is once again active.  There is a study going on that my doctor thought I would benefit from, but  unfortunately, my i’s weren’t dotted and my t’s crossed in time, and I missed out on being a participant.

Plan two, a new medicine has been approved for use in the United States and my doctor thought that I might benefit from that.  It would be two pills at breakfast for two weeks, so 28 pills.

I dropped the perscription off at the drugstore and was told that since it was a new medicine, it might be a while before it was able to be filled.

Surprisingly, I got a call from the pharmacy soon after I dropped off the prescription telling me that my insurance had covered the medicine and my co-pay would be $2,800.  I was in shock and was mentally resigning myself to the idea that I would not be taking this particular med and that the doctor would have to go back to the drawing board on method of attack on this onslaught of cancer.

The woman at the other end of the phone call agreed that the co-pay was high, and gave me a number to call that might be able to get me financial help.  I called the number, and was connected with another nice woman.  She asked me a few brief questions on our family size and income and a fax number to fax the first two pages of our last year’s tax return.

A few days after that, I received a call that told me that I had been approved for financial assistance. Remember what I wrote a few blogs back?  Be careful that the wolf you think is at your door is actually a wolf and not a rambunctious Labrador Retriever.

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Great Update

I went to my oncologist on Halloween , to tell me the results of my latest CAT scan.  I call it the CAT scan from hell because I’ve developed an allergy to the contrast fluid and had diarrhea from shortly before the scan until about a week afterward. Not fun!

The good news is that my tumors have not increased in size or number.  I am scheduled for another CAT scan after all the holidays are over, sometime in January.  The bad news is that the Dr told me that more chemo is in my future.  With all the good news, I asked how needing chemo fit in?  I was surprised, and a bit take back.  The short answer is that the kind of tumors that I have won’t stay dormant, at some point they will start to grow again and I will need chemo to knock them down again.

I wanted to yell “No!”, but this is his profession, he’s seen this beast many times. He knows.  But I’m not laying down with a lily on my chest.  I am going to continue to start every day asking the Immaculate Heart of Mary to be my Patroness, to ask her son to please grant me either a remission or a cure.  I’m going to continue to take my vitamin D and my yucky mushroom supplements.  I’m going to try to keep a cheerful mood .  I am going to continue to refrain from alcohol because that is what the Dr’s have told me to do.

I am going to continue to take it day to day, and be grateful for the day that God has granted me.

The bills continue to be, spectacular.  Today I don’t feel guilty for living.  My family is grateful to have me.  I am continuing to write my book “The Development”, although inspiration hasn’t been as strong as it was previously, but maybe that is because I am now writing hoping for commercial success instead of just telling a good story.

I’ve also taken pictures of my daughters cats with pumpkins, Jack O’Lanterns and Christmas garland and then submitted them to SnapFish Stock Photos and had them accepted.  I’ve been told not to expect to make my fortune selling photos, but anything I do make will help pay the bills.

I still have the pain in my leg, the mystery pain because it isn’t from the tumors.  I’ve been trying to find a wheel chair from Craigslist, thrift shops, even pawn shops, to no avail.  Maybe people are selling wheel chairs instead of donating them in this economy?  My knight in shining armour has come through again, and ordered me a new one.  It should be here before Christmas, so soon I won’t be home bound anymore.  Even walking in my yard is too much for me now.

So, there is my mostly great, update!

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Gearing Up For A New Battle

The line in the sand has been crossed, I do have cancer again.  This will be my second battle.  My first battle was in 2009 when I had colon cancer in both my colon and my ovaries.  It was only hours from killing me when it was discovered.  This time, I still have colon cancer, but it is not in my colon it is in my abdomen.  It is not just one tumor, but a few.  One of the tumors is already the size of a large orange and it is causing my thighs to have strange sensations.  My right thigh is always asleep/numb.  Sometimes the touch of the cloth of my jeans causes an unbearable burning.  The area gets cold, and it takes forever to warm it.  I’m starting to have trouble standing for shorter and shorter amounts of time because of pain.

Monday I go to another oncologist to plan another round of chemo.  Will I have nausea?  Will it make my hair fall out?  This time, will I be completely bald?  All the unknown.

The plan is that I will be poisoned with chemo until the tumor hopefully shrinks and dies.  Or until it hopefully shrinks and can be surgically removed.

That is what I would like your prayers for, that the chemo does destroy the tumor and that I am finally cancer free, or that I have a long remission until my youngest turns eighteen and is a young adult.  I know that children always need their parents, but as we grow older, the need changes.

If there is anything about getting cancer again that I am having trouble reconciling, it is the idea of leaving my baby at such a young age.  Not reading to her.  Not brushing the knots out of her hair or kissing her goodnight.

I won’t say that I didn’t shed a few tears, because I did.  I am mostly past that now, except for the aforementioned.  I am now trying to be active.  I know that this round, despite having insurance, is going to cost my family financially  so I’m trying to write a book before chemo makes me too tired.  It is on my other blog marynate.blogspot.com.  Well to be totally accurate, the first two chapters are.  I will put a little more up, but the idea is to get feedback and then actually sell the book, make money and be able to pay for some of my medical expenses.

The other thing I’m doing is trying to make some t-shirts that touch people on some level- their humor, their heart where ever, and use the money from those sales to also pay my medical expenses. cafepress.com/sagharborgifts

I’m also asking your opinion here, and that is, do you think it’s tacky for me to try to set up an charity donation  fund for my three youngest?  The greater probability is that they are going to be motherless soon, and without getting into scandal and dirty laundry, let me assure you, there is no one in either my family or my husband’s family that will do more than send a sympathy card when I’ve fought my final earthly battle.  No one is going to step in and say “How is Nate going to pay for child care?  How will the kids afford college?”  It’s not meaness, it’s just …. I don’t know what you would say?  The thought would never even come to their mind.   I would really like to get something set up for them now, because there are no guarantees that I will get through this battle with cancer, or in what condition to broach this subject later.

It’s really hard to figure out what to do now, when you aren’t even sure how long ‘now’ is, that will be there for your children later when you are gone.  I know that no one really knows how long their now is going to be, but probability wise, my now will be a lot shorter than most people reading this.

For right now, I’m sacrificing any “me” time to brush hair, play Uno with them, read to them and spend every possible moment with them.  But I keep wondering, is there something else I should be doing?

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Money! Money! Money!

I never really understood how sick I was, until I had returned home months later.  I’m not really sure what shocked me more, reading all the things that were wrong with me that could have individually killed me, or the price to diagnose and try to treat them.

I had never owed so much money in my life! My husband had never owed so much money in his life!  I’m sure my entire living family didn’t owe that much money cumulatively!

Yes, I had insurance.  I had really good insurance, or so I thought.  There was insurance speak; non-participating provider.  Some of the charges, my insurance had paid as little as $10 toward.

For the first time I felt guilty; guilty for bringing this kind of expense to my family.  This sickness had radically changed the future of my remaining minor children.  This cancer(s) had changed whether my husband would be able to retire when planned, or retire at all.  My guilt quickly escalated, and I began to wish, to regret, that I hadn’t delayed my trip to the Emergency Room by another eight hours, because I would have most probably died and not have put this burden on my family.  Especially since statistics said I’d be dead anyway in five years.

Understandably I felt extremely guilty and began to sink into a deep depression.

I’m relating this, because what has happened to me is not uncommon to serious cancer patients.  Don’t feel this way, there is hope!

First, get organized.  What I found worked the best for me was to buy one of the large ringed, vinyl binders.  You usually find them at Staples type store. Also buy those paper board dividers with the little colored plastic tabs at the top.  Buy a three hole punch. Buy a ledger book, and an accordion file.

Now, it’s time to start.

1.  Go over the bills you have in the house now.  I know there are a million of them, and more people than you even realized you ever saw.  Make Divider tabs for them.  Some of mine were Rhode Island Hospital, Connecticut Hospital, New England Lab Services, New England Medical Devices.  You might have to buy more than three packages of dividers, I had to. Punch holes into each bill, and put it into the binder.

2. Now go over to the ledger, make a three page section for each of the bills that you have right now.  In addition, make three page sections for Miscellaneous Medical Services, and Misc. Medical Supplies.

3. Work on only a few of the bills per day, or you will exhaust yourself.  Go over each bill and look for mistakes, more than likely you will find some.  Sometime insurance will erroneously refuse to pay toward a bill and all you need to do is talk to a manager, not the first representative to talk to you.

4.  Suppose that all the bills are correct, you can ask for the institution to reduce your bill, or even write it off.  Often they will do this if you level with them and explain that your insurance hasn’t covered the majority of your bill or that the bill is so overwhelming that you just can’t pay it.

5.  Call the American Cancer Society and ask them about any grants that might be available toward your expenses.  You can also try calling different Church, Fraternity etc groups and asking if they can help toward your bill.

6.  Finally, you can’t get blood from a stone.  In other words, if you don’t have the resources to pay a bill, you just don’t have it.  Unfortunately, the days when you could pay twenty or thirty dollars a month toward a bill seem in most places to be over.  But, in the USA, at least for now, you can NOT be put in jail or prison for being in debt.

7.  FILE EVERYTHING.  All your medical bills.  Every prescription.  Make sure you enter the day, the item, how you paid and the amount you paid on the correct page of your ledger.  Make sure you keep every bill and every receipt.  At tax time, you’ll be ready!

Finally, put it all into perspective!  You are alive!  What price do you th ink your family would consider too high to have you with them, for any amount of time? 

Let me ask you a question, why do so many gamblers have such huge debt?  Because they play a numbers game, and numbers, statistics are wildly unpredicatable!! 

Life expectancy predictions don’t take into consideration the most important variable, YOU!  Your will to live, your desire to be there for your children. YOU!

Where there is life, there is hope.  Live hopefully!

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