So you know how Facebook pops up the friendly little reminders of “This date last year” to remind you what you posted a year ago on this particular date?
Recently, mine continually comes up with posts about sitting with BigBear.
That he had a particularly long night of dealing with the chemo.
That he got to go outside for the first time in weeks on a rolling bed with a particularly caring nurse.
That he still WAS…
This just hammers home that right now, in my life he is NOT.
There is so much I have wanted to talk to him about this past year. There are so many things we could have had such fun talks about; preparing for Christmas, for kids’ birthdays, coordinating visits… My daughter had her first sleepover party this year complete with manicures and make up sessions and no BigBear to revel in the girlieness of it all! My sweet baby niece is about to turn a year old! She will have a Super Uncle to spoil her rotten and make her feel like the most special kid in the world like he did for my children.
There is so much I NEED to talk to him about now. He, the sage council and observer of relationships needs to weigh in on a sudden development in our Mother’s life. Decisions I grapple with that I would normally call him and hash out.
I MISS MY BROTHER
I am planning on repeating the pilgrimage to see my my sister and her wonderful new family. We are going to honor BigBear with our new family tradition, Summer Christmas.
In this vein, I have decided to drop the anonymity I have been using to blog. I am going to “come out” as it were. I will be using names from here on out instead of the labels I have relied on this past year. I am branching into other areas of the public now and it has become necessary. My Ebook is rapidly becoming a reality. The second book is coming along. Life requires identity.
So I posted a public post and the following is what it said:
Last year, the week after Easter, my beloved big brother Steve (age 46) was rushed to the hospital. He had awoken to find he was unable to stand or control his legs. Being a lymphoma survivor, they began running all sorts of tests and scans to see if they could detect the cause of this sudden onset of paralysis. A tumor was found on his spinal column and immediately removed.
He had battled through 12 rounds of chemo to defeat his first diagnosis of stage 4 lymphoma and reminded us of his vow that if it returned, he would not go through chemo again. We began a round the clock rotation of care and support and promised him we would not leave him alone. Since his hands had also become paralyzed, he was unable to even push the call button for a nurse for himself. Between myself, our mother and his best friend, he had 24 hour a day love.
He began to rebuild strength and was relearning to walk. Unfortunately the following week, the same paralysis returned, this time also effecting his torso and arms and it was found that the tumor had grown back even larger than the one they had just removed. It was diagnosed as Burkkitt’s lymphoma, which is a VERY aggressive form.
He sat us down and explained he had agreed to begin a week-long, super intense round of chemo at the doctor’s urging. He went on to say he had agreed to this as a test run only. He agreed to try 3 rounds of these week-long treatments, that would have to be given on an inpatient basis with 3 weeks in between to rebuild his strength. In other words, he was looking at months of hospitalization. There was a minimum of 6 rounds recommended, but he agreed to try 3 and see if it was effective. If it was found to be ineffective, he said we would have to love him enough to let him go and not make him endure the chemo any longer.
The treatment began that day… Yes, they were not kidding around!
The first night brought the medicine referred to by the nick-name “Shake-N-Bake”… It was terrible. It earned it’s nick-name because the medicine can cause extreme tremors. He had such a strong reaction to it, they had to stop the drip, allow his body to adjust and restart it at a MUCH smaller drip… Which of course means it takes that much LONGER to complete.
Each medicine was just a prolonged torture. I sat up with him through the night of the medicine called “The Red Devil”… Boy did it live up to it’s name!
The week was ridiculously difficult. He lost his desire to eat (which for him was a BIG deal). He lost most of his hair. But he NEVER lost his sense of humor and that sparkling personality. He had all the nurses laughing with him, even as they inflicted their implements of pain into his system. He did a full 30 minute stand-up routine to distract me from throttling a particularly incompetent nurse as she fumbled about prolonging the administration of his medicine for TWO HOURS! He was a saint.
After his first round of chemo wrapped up, which took MORE than a week, he began a rehab routine to try to get his limbs back under his control. He went back and forth between the ICU and rehab floors, continuing to keep up a brave front.
After several weeks of being in the hospital and getting only minimal response from his attempts to regain control of his limbs, he faced off with a doctor and asked how many rounds of chemo would it take or how long before he at least got the use of his hands back. The doctor answered that he could not in all honestly promise this could happen. He advised that in all reality, my brother’s life as he had known it was over. He would not be able to live on his own again. Would not be able to drive himself in a car. Would not be able to return to the job he had held before as it involved mainly computer/typing intensive labor.
Steve was devastated. He made the decision to transfer to a hospice center. He felt he did not want to endure 6 more months of this torture just to be left a completely dependent invalid. He would never even be able to brush his own teeth or use the bathroom on his own. What kind of life would that be for a strongly independent person? He had written a cookbook and would never be able to cook for himself again! We understood his decision, but were heartbroken.
We transitioned our round the clock care to the hospice facility. Once the chemo sort of phased out of his system we started indulging his every whim. We got him his favorite foods, candies, movies…whatever he thought of, we found. We kept him talking and laughing. We even got some of his friends to make a music video for him with all of us dancing and lip syncing to one of his favorite 80’s glam rock songs! Yep, we adored him around the clock. Nothing was too much.
His favorite holiday was Christmas. He had started staying at my house on Christmas Eve to do Santa with my daughter since he didn’t have any children. He ADORED spoiling her and celebrating the holiday with all his friends. So naturally, we started hatching a plan to celebrate Christmas with him before he passed away.
Now while all this was going on, our sister who lives in PA was giving birth to her first child! A gorgeous baby girl! We set her up on skype with him and he got to meet his beautiful baby niece and talk to our wonderful sister one last time. They expressed their love and said their see you laters (we never said good-bye to him, always “see you soon”).
He made arrangements for a special gift to be given to his best friend that would let her know how much he appreciated her and her unfailing love.
But as the time drew close to celebrate our mid-year Christmas with him on June 25th, it became painfully clear he would not be able to participate in our celebration. As a matter of fact, he passed away on June 25th. He had visits from his very dear friends that day. He held on in his sleeping state until everyone but his inner circle had gone and then peacefully stopped breathing.
The whole dreadful process took only 8 weeks.
8 weeks and a joyful, exuberant soul was just gone…
Now obviously, keeping around the clock care at his bedside in a town over an hour away from where I lived had taken a financial toll on my household. I am a single mother of two after all and one of my kids is in college… In the beginning, my employer said to take all the time I needed, my job was safe and would be there when I returned. I was reassured of this even the day before I was told I was being let go.
This was two weeks before my brother passed away. He never knew of course. He would have worried himself to no end. Only a very few people were told so that word would not get back to Steve.
Once Steve passed away, we planned his service so that we could Skype our sister in to attend with us via the internet , but somehow it wouldn’t connect on the day of the event. It was decided that since I had no job to rush back to, my kids and I were going to PA to meet my niece the next week and bring the recording of the service to her!
The week was such a blessing. It allowed us to recuperate and reconnect after the tragic events of the past 2 months. We decided that given the distance, the family obligations and weather involved in traveling at Christmas, we would create a new holiday in honor of Steve. Every year on June 25th we would get together for a Summer Christmas, just for us and to remember Steve!
Once I returned to my “normal” life, reality slapped me soundly in the wallet. I was unemployed with two children to support… Not a good feeling.
Compounding this was the struggle to re-center myself. Steve’s house had to be put on the market. His estate had to be settled. His belongings had to be gone through. His car had to be sold. All while trying to deal with the grief process… It was overwhelming to say the least. To add to this, his house got an offer on the FIRST DAY. Now we had to clean it out in just over a month! He had lived there for about 20 years… Yeah,…a lot of stuff…
I now have many of his belonging in my home. His fabulous sense of style is all around me. It is comforting and depressing at the same time.
I have struggled to get back on my feet. I am working, but at half my former salary. My son in college is working to support his expenses, but life just won’t cut me a break. This year my heating unit went out, the vent system under the house had to be repaired. The dog ended up with huge vet bill. Tires had to be replaced on my car. All the things that life throws at all of us, but compounded by the fact that I CAN’T catch up!
So now it is coming up fast on Summer Christmas and I am facing not being able to afford the time off work or the expenses.
I really want to be able to establish this tradition for my kids and my niece. I want to celebrate the life of my fabulous big brother and spend time with my remaining sister.
Life is too short for regret. None of us are promised tomorrow. We have to LIVE now! Next year may never come.
Sending you love, prayers and Big Bear Hugs!