Hello Everyone
Today is Easter Sunday and Ana’s 41st birthday or as most women her age would say “40 plus tax”.
So I‘d like to start by saying I hope you all had a happy Easter or a great Passover
Ana is doing great I’ll provide plenty of detail in this very long message, but an image is worth a thousand words so If you see what she looks like today click on this link www.youtube.com/watch?v=JVA6DY7NXNw
What a difference a year makes.
In late March of 2009 Ana had just snapped out of the four months of total mental haze, the state of Alzheimer like symptoms she was living in. At that time part of my closest family and the doctors thought that Ana had irreversible brain damage and were telling me that we should send her to a hospice. I was beginning to accept the fact that they just might be right. About ten days prior to her 40th birthday she snapped out of that state literally from one day to the next. All talk of end of life measures and policies were forgotten. We were all so thrilled to see her back mentally. However she was so weak, so frail and her future was so unclear. I celebrated her 40th birthday with the joyous rush of a huge victory, but at the same time I was torn to shreds concerned about Ana’s future.
You try to keep a positive outlook when dealing with cancer, but Ana’s situation was so unique the disease had spread to so many parts of her body that I was always going through huge swings. Like a pendulum ticking and tocking from pure joy to utter desperation. I would go from mentally projecting how we would spend the next four decades together to doubting she would be alive to celebrate Mother’s day a bit more than four weeks away.
Ana’s 40th birthday celebration changed a lot of that for me. The huge outpour of love and support we both received made me realize how blessed we were and how futile it was to project anything regarding Ana’s life and our future together. It made no sense to speculate on how soon she was going to die or how long she was going to live. We really never know that about anyone, and we simply go through life living basically day to day. However some strange phenomenon occurs in human minds when a loved one gets seriously sick, we rarely allow ourselves to simply look at it as a stage that will probably pass too. No matter what happens in some way shape or form life will go on, even if that person loses his or her battle. We change, we stop living day to day and suddenly demand all sorts of certainty about the future. We become experts in the bleakest most devastatingly negative medical statistics. We go from having a reason to live to regretting how we’ve lived our lives until that loathed day when our dear person fell sick. We normally purchase movie tickets and books almost demanding that we don’t know the ending, in fact one of the most common remarks we get in conversations about cinema and literature is “please don’t tell me the end, it ruins all the fun”. So why is it that when someone gets sick our minds flip and we demand a certainty that we never expected before? It’s as if we suddenly started to demand we know the ending of every book before we purchase it or every movie before we open our wallets to buy the ticket.
I don’t want to sound trivial. I know it’s almost insulting to compare the importance of a loved one’s life to the outcome of the latest who done it novel on the New York Times best seller list. I know better than most how great the anguish of not knowing the outcome of a person’s sickness can be. It’s horrible, you don’t sleep, you stop doing the things you love to do and a very long list of other things usually change for the worst. However, if you allow it to happen, that same uncertainty can be very helpful and very therapeutical. If we accept the fact that we really never know what’s going to happen nor does anybody else, we can let that become anxiety and fall into a zombie like depressed state or we can empower ourselves and allow room for hope. The certainty of uncertainty is very releasing, you can let go of the negatives and embrace positive. If you embrace not knowing what’s going to happen as part of living and not the cause of death then you really live and you give life a chance.
When the weatherman says there’s a 70% chance of rain don’t we usually go to the beach, have that barbecue or go on that bike ride anyway? We usually think “Let’s hope the weather guy is wrong the forecast usually is anyway” and off we go. We usually comeback after having a great time, and completely forgetting about the negative forecast we received a few hours before. Even when they are right and it rains we usually say something like “we had a great time until it finally rained”. If you stay home we don’t even enjoy the time we had before we actually got rained out.
What does all this have to do with Ana’s birthday last year? A lot more than most of you think.
A year ago Ana’s body weight was at 90 pounds (41 kilos) at one point it had been down to 78 (35 kilos). She couldn’t even sit up straight in her wheelchair. We had to prop her up by stuffing pillows between her body and the sides of the wheelchair. Her buttocks had basically disappeared and her thighs were so thin it was painful to actually sit on any kind of chair, so we also had to place pillows beneath her. Her neck was so weak she rarely held her head straight; the movement in her arms was very scarce as her legs. Even her throat and mouth muscles were emaciated. She couldn’t even swallow properly and had to be nourished through a stomach tube. She was incontinent so she used diapers and a urine catheter. She also had an IV pump that would give her a dose of antibiotics every two hours. To transfer her from her bed to the wheelchair was a major operation, even though she was very light, to move her was picking up dead weight, while her limbs were hanging completely limp and she would scream in pain with every contortion. Every time I would lift her I could feel all her bones pressing against her skin. Her skin would move around like a loose pajama. I would take a step or two while draping her over my own body to go from her bed to her chair or back knowing it was good for her but at the same time not knowing how to handle her shrieks of pain while at the same time trying not to tangle her or myself in the different plastic hose that were connected to her body.
Just to get her out of bed and try to have her go to the bathroom like a normal person was a heart wrenching experience. She was so weak it hurt just to move her bowels. One day she even fell off of her special toilet and I felt so bad. I had let go of her for a second because Sophia (our youngest child) asked me to open a pack of Oreos for her. I released Ana very cautiously but I was still standing by her about 14 inches (35 cm) away. I grabbed the Oreos looked at the package and before I could even open them Ana simply leaned forward, lost her balance and went face first to the ground. Thank God she ended up rotating a bit in midair and hit the ground on her side, since she wasn’t even able to move her arms to break her fall.
In spite of all this on her actual birthday and the way she behaved was a day that marked a before and after in many psychological aspects. We had sent out an open house type invitation. It was a Saturday and I had asked people to come see her between 3 to 6PM thinking that it would be more than she could take. Well life works its way out in its own way. Ana was so happy by the constant flow of people coming to see her that last visitors left at about 1AM. Was Ana tired? Of course she was totally and completely exhausted; but the shining in her eyes, the intensity in her smile and liveliness of her expression just made something in me go click.
Until then I had been able to keep myself basically positive in the whole process. The positiveness was however more like a mathematical average. It was the final product of tremendous mood swings. Extreme hope opposed by moments of desperation and all sorts of in betweens. I focused totally on how she was responding to the specific cancer treatments and I didn’t care one bit about the other issues that derived such as the pneumonia, and other infections. I believed that all those “minor” problems could be taken care of but were futile to worry about if we couldn’t stop the numerous tumors. I would repeat almost as a mantra “day by day, hour by hour, minute by minute” and did my best to cope that way, however I would inevitably fall into the emotional trap of projecting into the future and that’s when things would go haywire.
On her birthday to see Ana so happy, so emotionally fulfilled was a tremendous boost. That turbo injection she got was thanks to all of you. Our house was flooded with flowers. Bouquets were delivered all day long. They were sent from all over the world, some by people we have never even met. She also received all sorts of cards, books and gifts as well as holly water and other religious symbols. Nick Barret from England sent Ana a video greeting with some birthday guitar playing just for her. His band Pendragon is one of my absolute all-time favorites. He’s a great guitar player, a wonderful composer and on top of that he’s an incredibly nice guy. Ana was thrilled with that video. All of these things were very important and very uplifting but nothing did Ana as well as so many of you just dropping by to share a smile, give her a hug or a kiss on her special day. Turning 40 is always a milestone and this one was a real big one for her. She went from almost being sent to a hospice to shinning like a rock star on a stage and really initiating her road to recovery.
This uplifting was mutual. A lot of the people who had seen her in the hospital or at home in the previous weeks and decided to come that day were very tentative. I could tell that many came in a mood that was closer to a final goodbye than a birthday celebration state of mind. The image of her previous horrendous state was vivid in their psyches’. All of that was thrown out the window when they saw her very weak, but talking away and full of zest for life. Many people cried out of pure joy, they would hug her very delicately not wanting to hurt her and many would come and squeeze me with all their might saying “this is actually for Ana but she can’t take it yet”. So instead of just dropping by for a few minutes people stayed talking with Ana, praising her and just charging her with unlimited energy. I had lit the grill so the Argentine sausages were flowing, drinks were being served, people were having fun and celebrating Ana’s coming back to life. Every time someone was about to leave citing that Ana was probably too tired she would automatically demand “stay a bit longer this is just starting” and they obeyed. They had to, she was the birthday girl. It was absolutely magnificent. It was all of us just living the moment at its 101% best not giving a damn about tomorrow, just grateful for the today. A year later the thrill of that day is very vivid in my mind and soul.
Back then I didn’t realize how significant that day was. At the time it was simply a great day nothing more and nothing less. Time made me realize just how much of a before and after it really was. About two weeks after her birthday we had the first tests that showed that there were no more active cancer cells in her body which eventually allowed her to be declared in complete and absolute remission in August of 2009. Against all odds in just four months Ana had gone from having cancer all over her body, brain and central nervous system to being cancer free. If I were to say it has been completely smooth sailing ever since I would be lying more than the most corrupt politician. We’ve gone through all sorts of difficulties; Ana was hospitalized a few more times after her birthday.
In fact last year her birthday didn’t coincide with Easter. We celebrated and did the egg hunt with our children, some friends were over for lunch and that evening Ana started with some problems and I had to take her back to the hospital. The children’s faces said it all. They went from having a normal fun Easter Sunday to seeing their mother carried away to the hospital again. She has had numerous health issues over these months but she always got better and stronger. The open wound on her scalp in itself has been a huge ongoing battle. The physical rehab process has been very tedious and challenging but by the same token very rewarding.
I know we will have many more challengers ahead of us. The physical and health issues related to the chemotherapies and radiology are real and inevitable. Even though I’m well aware of Ana’s reality the real mental breakthrough that I had after her birthday was that I completely let go of projecting the future. As obviously painful that eventually losing Ana to a cancer relapse would be I simply look at living today in the real meaning of the word. Our biggest projections into the future are setting up dinner plans for the upcoming weekend or participating in events like the Relay for Life. To fully realize that not knowing what is going to happen with Ana has allowed us to not worry about it and embrace each day like a new adventure. It’s like before she got sick, we never really thought about sickness. Today treating her cancer is almost like a person with a chronic sickness like diabetes. We will always have numerous weekly doctor visits, but they are simply part of our normal day to day schedule.
Ana is doing wonderfully well. She walks freely, and hasn’t even used her walker or a cane for about three months. Since November she sleeps upstairs in our bedroom and is capable of going up and down the stairs by herself. Her current body weight is 106 Lbs (48 kilos) so she’s almost back to the normal 116 Lbs (52 kilos) that she weighed before she got sick. She still has some occasional balance issues and she does get dizzy if she looks upwards. One of the consequences of the radiation she received in her brain was some damage to her left inner ear and our sense of balance is regulated by our inner ears so this is something we will have to deal with.
Her mental faculties are fine she has completely recovered her short and long term memory. She only has the lapse of those four months that she was in the Alzheimer like state. Not remembering those horrid times is actually a blessing for her. The bottom line is her mental capacity is as good (or as bad) as it was prior to her getting sick.
The wound on the top of her scull has almost completely healed. After all the sessions of hyperbaric medicine back in September and October her scalp skin became healthy enough to accept the skin grafts that were applied. So the inch and a half hole she had is finally closing, it’s totally filled with brand new dermis tissue. We only need for the normal process of the dermis to develop its own epidermis and she’ll be able to let her hair grow back. When that wound completely heals we will have also closed that open door to infection.
Ana has recovered so much that since December she’s having her normal menstrual period again. I know that as a married man I shouldn’t be publicizing her cycle but when this happened it was the first time in years that she was actually happy to need to use intimate towels again. It’s great to know that her body is that healthy again.
The biggest drawback she still has to lead a completely normal life are the fine motor skills in her arms and hands, especially her right side. What this means in everyday life is quite simple. She can eat her own food but either the kids or I need to cut it for her. She can drink beverages but she needs to use a straw or a Sippy cup. She still can’t button or unbutton her clothes, or open tight closing containers such as a plastic Tupperware. There’s a long list of cans and cant’s but I think you’ll get a good idea. Fine motor skills take a very long time to recover, but we’ve made it this far so I have no doubt we’ll get her all the way back over the next months.
I know I have not written in a long time, the reason is that I’m very busy writing something else. I’m currently trying to write a book about Ana’s story. It’s a monstrously difficult task for someone who has no formal education in writing. Many of you have filled me with praise about the messages I sent during Ana’s darkest hours, and that energy I received back then was so important to keep me animated and fighting. All that praise almost “blackmailed” me into staying positive. With so many of you saying good things it was impossible for me to give in. The truth is that no matter how detailed those messages were I never spoke about the other 90% of behind the scenes things that happened and all we went through as a family. After all that we’ve experienced I believe our real mission in life is to help other to deal with this horrid disease. Hopefully this book will help others deal with this sickness. It’s not just about the person who is suffering cancer; the disease is also very difficult on direct family, extended family and friends. People try to help, and I’m well aware that anyone who tries to help is doing it out of the pure kindness of their heart, but many times they don’t realize how much damage some wrongly applied help can actually be. Hopefully with this book we can inspire others to never stop fighting and also how to help those who want to help to optimize their good intentions.
After almost a year and a half of fighting for Ana’s life and her recovery I’m still in awe over the incredible response we received from so many. We’re constantly being asked why we believe that she recovered the way she has. I can’t pinpoint one single reason. The doctors and nurses at Baptist are second to none. We always believed and fought very hard, but the energy that was created by your prayers, belief, positive energy, good vibrations etc. made the miracle of her recovery possible. Ana is alive because so many asked for it to happen and it did. Each of you is a part of her recovery and we are forever grateful.
We still need your prayers and energy to help keep Ana safe from relapses, to fully recover the wound on her scalp and completely rehab her physical capabilities. It’s not that we don’t appreciate all the love and support we’ve already received it’s just that we need more of it to keep her healthy and safe.
Before signing off I would like to ask for a favor. On April 17th as every year we will be part of the Relay for Life of Doral. As you probably know by now this is the American Cancer Society’s premier fundraising and public awareness event. Ana, the children and I have been part of this for seven years. We started doing this way before Ana got sick.
The American Cancer Society says that they proudly sponsor more birthdays by fighting cancer. Due to a drug like Herceptim that was not available a few years ago Ana has a real chance of living for many more years. We need investigators to develop more drugs like Herceptim and that requires money. We really need your donations to help our fundraising efforts. Look at this way today is Ana’s birthday and a great gift to her would be a contribution to fight cancer. All online donations go directly to the ACS and are made in our name http://main.acsevents.org/goto/victorgospo
If for whatever reason you feel uncomfortable doing online donations please go to the following link http://main.acsevents.org/site/TRGiftForm?fr_id=21043&px=14256711 and you can download the off line donation form with the instructions to mail in a check directly to ACS also in our name.
Once again thank you for all that you have done for us.
Lets sponsor more birthdays together!!!!
Sincerely
Victor Gospodinoff
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