Ana Updates 034 October 27th 2009 (English)

October 27, 2009

Hello Everyone

It’s been a long time without writing to you with news regarding Ana and her incredible road to recovery. The last time was August 5th when I informed you of her complete and absolute remission.

The truth of the matter is that after the huge relief of her remission I needed a break. I really felt the need to disconnect a bit from everything. In no way do I want to sound ungrateful for all the support that we’ve received from so many, on the contrary I’m always showing Ana different post cards, letters, e-mails and gifts that we’ve received over these almost 11 months. I just needed some quiet time so I haven’t really been writing lately. I hope none of you have felt that now that’s Ana is better we forgot about all that we’ve received from so many.

Since her declaration of remission so many things have happened which I will tell you about but let’s start with the most important piece of information.

Ana is doing wonderfully well. She’s walking all over the ground floor of our house with her walker. According to her physical therapist she should be walking without her walker in 45 to 60 days. Her balance is good, but still needs a bit of work, she really needs to get her lower back, abdominal and gluteus muscles completely recovered to have perfect balance again. The strength in her legs was graded a very good 3.8 out of a possible 5 by her therapist. The other big issue right now is building her stamina back. She get’s tired after about 15 to 20 minutes of continuous walking or standing. She’s able to do a lot of everyday things, but still needs help when fine coordination is involved. So even though she can move around freely she still has severe limitations in her day to day functionality. For example she can eat using her own fork, but I have to cut her food. She can open the refrigerator door but she can’t serve herself a glass of juice.

Her mobility is good enough that she hasn’t even sat in her wheel chair for at least 2 months!!!! That thing is just gathering dust in the garage.

She’s fine moving around on flat surfaces, but the stairs are a different issue. She can go up the 4 stairs to our front door without major difficulties; I don’t help her, but stand by her just in case she loses balance.

Due to the blindness in her left eye and her still pending balance issues it is difficult for her to descend stairs, but she’s improving little by little on a daily basis. The balance will improve with further exercise; there are no neurological reasons that are hindering her. She was in bed and wheelchair for over 6 months and it takes time to recover full mobility.

Her hands and arms still need quite a bit of work, and are the main impediment to her full functionality. Her right arm and hand are at about 40% since it was that side of her body that was affected by the stroke she had shortly after the surgical removal of one of her brain tumors. Her left arm and hand is at about 75%

Her mood and her state of mind are fine. Great is a better description. It’s all about looking towards a better future. She still can’t remember anything that went on between December 2nd and March 18th which is really a huge blessing for her. Actually I hope she never does remember anything from that period. My own memories are more than enough for the both of us.

Since August a lot of water has gone under the bridge.

We’ve been going to get all sorts of treatments to help prevent her having a relapse. She gets the drug Herceptim once every 21 days and Arredea every 28. These are not chemotherapy drugs, they are basically immunotherapy treatments.

There are so many aspects of her recovery that I could write dozens upon dozens of pages. We have constant flow of appointments with ENTs, ophthalmologists, cardiologists, neurosurgeons, oncologists, physical therapists etc. Each one of them is time consuming and ends up being a debate, because each specialist has his or her own recommendations incredibly well justified and explained which normally contradict the recommendations of at least one of the others who also sounded as convincing and logical as the one before. It can be quite confusing. How do we deal with this? We just keep pushing forward basically the same way we did during the darkest days of this process. Trying to balance out the options and going with the one that rationally sounds the best, but also feels the best instinctively or in the gut. Our bodies talk to us more than we realize, it’s just a matter of learning to listen better.

The biggest issue has been the wound on the top of Ana’s head. Where she used to have the Ommaya Reservoir port thru which she received the chemotherapy into her brain fluid. As a consequence of the radiation that treated the brain tumors the skin on Ana’s scalp is very weak. The skin has lost its ability to heal. The port was removed in March and we’ve had an ongoing process of frustrated healing since then.

As part of the multiple efforts to heal the head wound back in May she got a small titanium plate placed there since at that time she was seeping a bit of spinal fluid thru the wall of her skull plus quite a few stitches to close the skin. The stitches were not enough to heal the skin, thus the wound never finished healing and became a scab the size of a dollar coin staying pretty much stagnant.

About 6 weeks ago the neurosurgeon decided that we try hyperbaric medicine. I SCUBA dive and have always known that the last place you want to be is in a hyperbaric chamber, it means you’ve had a diving accident and you have got the bends. So in spite of my initial prejudice, I have learned that it has a huge application in wound therapy when healing issues are involved as in Ana’s case due to radiation, but it’s also used a lot with diabetics, hemophiliacs and severe burn victims. Inside the chamber the patient gets pure oxygen at about 3.5 bars of pressure so instead of getting the 20 to 22% oxygen we normally breathe, it’s like receiving it at 1500%. This completely revitalizes her body cells and most importantly the tiny blood vessels that were damaged by the radiation. Once blood circulation improves, any type of wound will heal a lot better. The change in the wound is remarkable. It has also stimulated the growth of her hair and you can see the positive effects on all her body’s skin. The hyperbaric medicine also seems to have boosted her general state. She has more energy and is livelier than ever.

The hyperbaric medicine does have its drawbacks. Since mid September we’ve been going everyday to South Miami Hospital for a two hour session, but the real time with the commuting, putting on and taking off the special gown etc is a 3 and half hour ordeal. On top of that almost everyday we end up having some other doctor appointment and many times even two.

The logistics involved in taking Ana to so many different appointments, continuous testing, therapies and especially the hyperbaric medicine of the last 6 weeks plus taking care of the 3 kids is grueling. She’s doing wonderfully well and so are the children so it makes it 101% worth it, but it takes a toll. I don’t want to sound like the victim or the hero but I told a friend the other day “The logistics of Ana doing great are killing me”. We still have 8 sessions left so by the first Thursday of November we should be done and hopefully we can get back to a more normal rhythm of life. We will still have the other doctors to see, but no more South Miami Hospital.

A few weeks ago Ana did go back to the Baptist Hospital for a slight surgical intervention. After the first 14 sessions of hyperbaric the neurosurgeon cleaned out the wound, removed the large scab and also removed the titanium platelet. It sounds simple but needs to be done in the sterile conditions of the OR. It was a short one day stay. However going back even though it was such a short time did bring back a whole bunch of not so pleasant memories. The positive side is how Ana’s hospital stays have shortened over time.

Ana’s first hospital stay was almost 2 months; she came home for 10 days and had to go back to the hospital for another 4 weeks. Then she was home for a month and went back for about 10 days. She came home for a little bit more than a month and had to go back to Baptist for 6 days. This time she was home for more than 4 months and went to Baptist for about 30 hours. Quite an improvement!!!!

There are so many aspects to dealing with such a long and complicated recovery.

During the worst stages of her sickness I ended up putting on about 22 pounds. The sleepless nights were very difficult to cope with and I would try to calm the anxiety with ice cream, chocolates and other sweets I normally never eat. I’m the kind of person who really has no sweet tooth what so ever. So all of a sudden I was pounding the sugary stuff. On top of that I went from playing a few hours of tennis 4 times a week to maybe playing one hour every two weeks. Things are better now and I’ve lost about 9 of those 22 pounds already, I’ll be back to normal weight in short.

I haven’t been able to really work in almost 11 months. I’ve done a few odds and ends here and there but nothing substantial and I need to desperately get back to producing income. At this point I don’t even have dust in my pockets. About 6 weeks ago I was starting to get back into working; I was starting to call some clients and making appointments. All of a sudden we started with the hyperbaric therapy and it was all over. That therapy is doing Ana a lot of good but it just completely kills my day. We’ve made it to here against all odds and Ana only has 8 sessions left so hopefully I should start producing income in short.

The day Ana was declared in remission was absolutely remarkable. It was the type of day that you never ever forget. The ones you can remember every single detail about. I mean the odors, the time on the clock, the clothes you had on are like multiple pieces that all come together and just frame that one priceless instant in your soul forever. On August 5th I was able to send you a few lines just to let you know the good news but I had no real way of expressing the full impact of the update. It still sends goose bumps all over my body, but I’ll do my best to describe the events.

That day during the first week of August we went to see doctor Kaywin totally convinced that he was going to tell us that Ana was in remission. In April all her tests indicated no Cancer activity whatsoever. We didn’t talk about it publically because we needed the same result 90 days later to confirm the state of remission, so we did our best to keep it quiet and didn’t allow anyone to know about our growing confidence and euphoria.

We had all her tests done the last week of July and we were going to the Dr.’s office so he could tell us the results. We were so confident we were afraid of being arrogant about it. We could both see Ana’s progress and how well she was feeling. None of the warning signs that Dr. Kaywin asked me to be aware of ever showed up between April and the last week of July. So in spite of our confidence, when Dr. Kaywin sort of dilly dallied commenting on Ana’s latest test results I was invaded by panic. All of a sudden I was desperate to know what he wasn’t telling us; I was questioning how we could be so unlucky and why Dr. Kaywin who is so direct and clear in his speech was sounding dubious and evasive. On the verge of tears I blurted out “Dr Kaywin I don’t know what you’re talking about, what does all this mean? Is there something you don’t know how to tell us?” He just looked up and he fixed his eyes on mine and pronounced those magical words “On the contrary this is wonderful news, it means Ana is in complete and absolute remission”. I felt a rush similar to the one you get when you almost crash your car, but this was 1000 times stronger. I simply broke down in borderline hysterical tears, the uncountable sleepless nights, the images of bewilderment of our children, the images of Ana’s suffering, her screams of pain, her almost lifeless body, the anxiety on the faces of countless friends and visitors, the apprehension of family members all flashed in my mind. Each one of those memories exploded in my brain and disappeared in thin air just like giant sky rockets at a huge fireworks show. The tension, anxiety, uncertainty and stress of the previous 8 months just swept thru me. My knees felt weak, legs turned to jelly and I had to hold on to Dr. Kaywin’s examining table, I felt I was fainting for about half a second and with the same intensity all of a sudden a bolt of joyous energy just plowed thru me and I was up bouncing on my feet and hugging Ana with all my might. We were both crying telling each other how much we love each other and at the same time hugging Dr. Kaywin whom even shed a few tears. The only time I felt a similar joyously emotional surge was when our children were born and that was not as overwhelming as the release I felt with the confirmation of Ana’s remission.

From the Dr.’s office we went to pick up Chiara our 10 year old daughter at her cheerleading practice camp. I went to get her and left Ana in our van waiting. We wanted to tell our children the magnificent news when they were all together. However as soon as I had Chiara in front of me I couldn’t hold it back. I kneeled down got face to face with her. We were on a school playground; we were surrounded by her friends and a group of mom’s from her school who had also gone to pick up their daughters. Everyone was in the same general area, with a certain degree of togetherness but each person was in their own little world.

I simply told Chiara “We just came from the Dr’s office and mommy has no more Cancer in her body”. She started screaming, crying jumping and hugging me, everyone around us was completely bewildered. I’ll never forget those faces staring at us and obviously according to their non verbal expressions most thought something was horribly wrong. This is regretfully a reflection of how society has taught us to react. We see someone overcome in emotion and if we don’t know what’s really happening we automatically think something bad occurred. It took a few instants for all those startled little girls and moms to understand that Chiara was spinning in circles and screaming out “My mommy has no more Cancer!!!! My mommy has no more Cancer!!!!”, there was a minor stall in time, a moment of complete inaction and then the words sunk into all those people and we were swarmed in hugs, smiles, congratulations and all sorts of greetings. Words like “miracle”, “thank God”, “hallelujah”, “I can’t believe it” were just sounding out all over.

Before I could realize what was going on Chiara had disappeared, vanished completely. One mom understood I was looking for her and all she said was a typical movie line “she went that way” while pointing her index finger towards the parking lot. When I caught up with Chiara, she had dived in head first to the passenger seat of our van and was entwined with Ana simply crying her eyes out, her little chest heaving so hard it looked like it would explode. Ana was in a similar state and both were repeating endlessly “I love you, I love you, I love you” to each other. Absolutely beautiful.

Eric was thrilled by the news, but reacted in a calmer way than Chiara which is understandable since it plays into their different personalities just fine. Sophia didn’t really react since she’s still too small to manage the concepts and notions of life, death, sickness and recovery.

These months have also required a lot of readapting. The anxiety of Ana dying has dissipated and has turned into a more subtle nervousness about suffering a relapse. It’s not that I spend all my days and nights thinking about a relapse but it does seep into the mind with certain consistency. When this happens all of sudden I become very self conscious of how close we were to losing Ana, all sorts of doubts about being able to go thru another battle just grind my confidence. Usually after a while I start remembering where we were around Christmas and how well she’s doing now, I remember we had the odds so highly stacked against us that I just erase any thought of relapses, I look forward focusing on the good and remember the real goal Ana and I have put into our minds. We will meet our grandchildren together and on this Earth.

Ana responded incredibly well to all the initial treatments, so if regretfully she does have a relapse we still have a whole lot of tools available that were never even used. So if push comes to shove I know we still have a lot of fight left in us.

The children have recovered their mother, she helps them with their homework, reminds them to brush their teeth, eat their vegetables and all the other motherly memory reminders you can think of. She’s there for a good morning hug, an afternoon smile and the goodnight kiss. The only difference is they come to her bed instead of Ana going to theirs. The order of the factors may change but it still is the same result, happy children and a fulfilled mother.

The children have also recovered mommy in a deeper way too. Before remission they would doubt a lot of the things she said or instructions she gave. For example Ana would say “Go brush your teeth and go to sleep”. They would instantly come to me and ask me if that was ok or if they had to obey mommy; as if their insecurity regarding Ana’s life made them unsure about her authority within the family structure. I obviously would back Ana up and make a point of reinforcing the idea no matter how sick mommy had been she is their mom and they need to obey her. Since Ana was declared in remission they never did that again. It’s as if the reaffirmation of Ana’s survival in their minds made her authority and her position in the family structure comeback to life in their psyches.

During the last four months, as if Ana’s recovery from Cancer wasn’t enough to keep me busy, my mom was also diagnosed with breast Cancer. Thank God, hers was detected almost miraculously soon. She had a miniscule tumor the size of a grain of corn. She got it removed with surgery, it didn’t spread anywhere. She finished with her radiation last week. She’s doing great and should have no mid or long term issues with it due to the earliness of the detection.

These months of silence have been a way of looking back and reviewing many aspects of our lives. While you’re in the battle you just push and fight without thinking too much. Your goal is surviving and all you do is about that one objective. You don’t have time for thought. When the anxiety of survival is put on hold reflection takes over. You go thru moments of depression. It’s a bit like soldiers when they comeback from war. They’re up to the task while in combat, but once they’re home and the enormousness of what they’ve had to face sinks in, they need a downtime to process it. You end up auditing every facet of your life and it’s not an easy process. You end up questioning even the most trivial aspects about the way you do things

In my case, among other things I’ve discovered a real interest in healthier habits. I believe that at home we’ve always been quite healthy. We’ve always had a lot of vegetables, fruits, fish, pastas and barely any fried foods. We’ve never smoked and only indulged in an occasional barbecue, red meats bacon etc. There is however a lot of room for improvement. We’ve changed to whole rice and whole wheat pastas. I’ve changed plain coffee for the organic kind and green tea. When we sit down for a meal with the children, before eating all five of us in turn tell the rest out loud what we’re happy and or grateful about or something positive that we experienced that day. The list of changes is longer but you’re probably getting the idea by now.

Way before Ana got sick I was a volunteer for the American Cancer Society. I started seven years ago in gratitude for my dad surviving Cancer his second time, and in memory of my grandmother who didn’t survive her second time. Now my motivation to do something about Cancer is greater than ever. I ask all of you to help fight this horrible disease to the best of your abilities and please don’t get upset if in the future you get quite a few messages about supporting the cause.

What else can I say? Not much and by the same token I could go on for hours more. These 11 months seem as if they’ve gone by in a snap and at the same time feel like they’ve been part of my life for the very 44 years my existence. It’s certainly been a life changing experience but life hasn’t really changed. I’ve adored Ana since day one, that hasn’t changed. Our children are the axis of our lives, and that hasn’t changed. I’ve always loved socializing, music, reading and sports, especially water sports and tennis; that hasn’t changed either. The only change is my angle of vision has rotated a few degrees.

I’m still in awe of all the messages full of love, blessings and support we have received and continue to receive. I’ve never really had the time and energy to write back to each and every one of you, but I can assure that I’ve read every single line, and cherish every single word. There are quite a few major lessons from this experience. It’s an education you don’t want to receive, but when you get it, it proves to be very useful. For now I’ll mention just two of those lessons. First of all there’s a lot more good in the world than what we think and allow ourselves to see on a daily basis. Two, if you ask for help, you will get it.

Once again as a family we’re so grateful for all the love, prayers and support we’ve received from so many from literally all over the world.

I hope we can somehow give back at least 1% of all that we received.

If anyone any of you may know is ever affected by Cancer and you think talking with me can be helpful please don’t hesitate to contact me. I’m more than willing to go meet or spend all the time in the world on the phone with Cancer patients, family members and or caregivers.

In the last few months I have spoken with just a handful of people affected by the disease. I feel that after all I’ve been thru I can provide help, insight and some decent advice. I can’t cure any body; I can only provide some conversation that just might help cope a little bit better. No matter how small my contribution has been with the few people I’ve spoken to, it sure has felt great giving back.



Thank you



Victor