Tomorrow, tomorrow…that song is running through my brain. When you have a disease that is likely to take your life, tomorrow has a different tone to it. Like with my IRA. I took some distributions from my IRA account. My expected lifespan was five years. So I took some money from the IRA to pay off bills. When you have a medical condition that is expected to take your life, you are eempted from the 10% penalty. But you still have to pay tax on the distribution. So I took the money and spent it, and paid tax on a higher tax bracket than I should have because my spouse works. One of those nasty little realities of being sick at a relatively young age.
Because of the chemo I was not able to work, every four weeks I would have a treatment and be down with pain or listlessness. True conditions, but when you interview with a company hard to sell the human resources person on your value for three weeks per month. And the inevitable question, What do you see yourself doing in 5 years? Well, the answer to that one is bleak, so can we skip that question please? So taking disability and tapping the retirement account seems like the best answer.
But now I have a different perspective on Tomorrow. After receiving the news that my cancer biopsy was dead tissue, I am faced with some tough decisions. Since the IRA is no longer an option without losing at least 25% of it’s value with early withdrawal. And now I have a retirement account that is worth much less than it was before I got sick. It was a consideration when I took my withdrawals that I might get old and need that money, but such a limited consideration that I took the gamble. Wow, now I think I’ll have to kick some butt and pay that money back. I cannot just put the money in from my spouses earnings, to pay it back I will have to earn it myself.
I find myself looking back at the workforce. I am luckier than most, I have a friend and former employer who is willing to let me come to work and attempt my old job. With some changes, I will re-do work that has already been done. I do tax and bookkeeping work so accuracy is tantamount. If I re-do the work and come up with the same results then my noggin is probably OK. So I have been there a couple days and have been reviewing work in progress, my confidence has grown and I think I may have retained a few brain cells.
You have no idea what fear is like until you think that your brain is not functioning properly. I still have chemo brain in that I cannot come up with words at times. I still just give up and say “chemo brain”. Perhaps it is my perception, but maybe, possibly things are improving. The instances of confusion may be clearing. Some people say it can take as much as a year for the real condition of chemo brain to clear up, I haven’t had my follow up appointment with my oncologist, I am taking some time for a “doctor vacation”. When we meet again in three weeks I will ask that and many other questions. Until then I will go with the perception that all is well.
When I told my oldest daughter about the dire news that the cancer was incurable and inoperable and most likely to end my life, she took the news hard and all I remember was her telling me her secret. She had just had a positive pregnancy test. You see, due to medical concerns, becoming pregnant was miraculous for her, and the possibility of a successful pregnancy was also a concern. I worried that the news was detremental to her health and at the same time was so happy for her and her husband. They had tried for some time to have a baby and this was a gift from God. She did have a very happy pregnancy and her daughter is now one year old.
My son is a deep soul, and therefore the news was crushing. Eventually he moved closer to me so that when I became too ill to care for myself, he would be able to assist in my care. That was the plan, we had discussed it when I first became ill. Now things have changed.
My youngest child gave up her senior year of high school, you see I became ill in January and she was just taking her mid-terms. She managed to do well on all her exams, even with the spectre of cancer looming over us. She never had a negative thought, even when stuck in a hospital room with me, waiting for hours for testing to be done, consultations to be made. She took it all in, and was certain that we were not to give up hope and that we would beat this demon. I missed concerts, drama productions and the visit to Farmington, the college of her choice. Family members stepped up and helped out at much as possible, but for me it wasn’t the same.
As you can see Cancer doesn’t just touch the person, it touches all of the people around that person. You begin to prepare them for your leaving, dying, you make plans with lawyers and caregivers, all the things that you don’t want to leave for someone else to deal with. I pulled out life insurance and talked with our investment guy. (BTW unless you have really good insurance, you can pretty much kiss your investments good-bye, between deductibles, travel expenses and replacing your income, money in the bank leaves you at lightning speed).
Now, those things are moot. At least I didn’t give away stuff prematurely. I didn’t give away my dogs or my husband. I did however pick out his next wife, he wasn’t amused. His response was perfect, he was never getting married again. The dogs sometimes were a stretch, I would be so sick, unable to move and Dodger would beg to play tug, he is a large dog and tug is a challenge even for a healthy person. If I had not promised Dodger upon adopting him that I would never leave him, he might have found himself in another home. Luckily both the husband and the dogs made it through.
I have been keeping a vacation account, a few dollars now and then, mostly to pay for trips to see the new granddaughter. Trips I found to be especially important as I was not expected to live long enough to see her go to school, much less grow up. Now the account has new meaning, perhaps it can be spent to bring the granddaughter here, get her out of the city and to the lake where fishing and kayaking and swimming were the order of the day. She can spend time with her other cousins and as girls they can all tease their grandfather and I can watch. We are fans of water balloons, a stress reliever I found to be helpful when my job got to be too much to bear. Now the water balloons will be making memories that my great-grandchildren will laugh at.
Thoughts, plans, memories, all things that were not possible just a few weeks ago. Things I used to be jealous at people for having. Whenever there was a commercial for a new cancer drug or for a cancer treatment center, I would have such a hard feeling in my heart. I was happy for the people who were able to survive this dreaded disease, but so angry that there were no clinical trials for small cell carcinoma. Mostly because people with small cell didn’t live very long, it wasn’t prudent to start a trial if you had a hard time getting and retaining volunteers.
Now I get to start all over again, with feelings of guilt. Guilt because my friends with small cell are no longer with us. I know that they would be happy for me, but they did not survive long enough to see this day. Guilty feelings because so many people supported us during our fight for answers, especially our trips to see specialists in Chicago, the many people who sent flowers and food, ones who sent cards, my lovely neighbor who would send me a card every other week hoping to boost my spirits. I know I should not feel guilty, but I’m alive, I have a future and I know how jealous I was of people who had that. My emotions are all over the place, how do you live with dying and then turn around to relearn how to live with living?
I don’t want to leave you, my friends who have been with me all along the way. The ones who have spoken to me and told me that they have found strength and inspiration in my words. You have humbled me, I want to be there for you. My story has not ended, my love for you has not changed. I will continue to write, write about adversity and how we can all live with the challenges big and small, of our daily life. My hope is that in some way I continue to make a difference.