I decided to write to help some others that may be caught in the same frame of mind my common law spouse was trapped in. First off, we are Canadian living in Toronto, Canada. Tatum is no longer with us as she passed from her metastasized Cancer (Devil) in August 2016. She was young and only 36. I have many second thoughts about airing this story- but decided today that if I can help just one person, here I am. I owe it to Tatum and maybe she would have like this. It’s no use to tell a story unless you tell the whole story. I am starting this from scratch.
Now, you'll have to understand Tatum had a soul like no other. Her spirit, when alive, was genuine, sincere and never to be matched. Tatum would protect most animals and even rescued wasps from the ocean. Her fight with Cancer and then Lymphedema was a very hard, lengthy and complicated fight. Incidentally, what Tatum went thru, I am not sure many people could have endured likewise without seeking suicide. Tatum did it though, with courage conviction and in the end, like a trooper.
We spent upwards of $180,000.00 with surgery, hotels, airfares and hospitals out of the country of Canada, but mostly done in Italy. Our Canadian Federal and Provincial government seems to spend mass amounts of funds on Cancer, but not much support for Lymphedema. The Sunnybrook hospital and support staff went over and above. Their hands are tied when it comes to lympedema. All they can do is help with advice and recommend a garment program. The hospitals support you mentally, but our surgical lymphatic vascular availabity is nonexistent. There aren’t any surgeons in Canada to perform lymphatic surgery, it’s not available. You have to leave the country. The Province of Ontario doesn’t support to perform or have the knowhow to perform Lymphatic anastamosis or bypass of lymphatics. This LVA is an operation known surgery to perform lymphatic connections or lymphatic bypass. It is available in at least 5 other countries and the evidence is right on the internet.
How can a sophisticated country like ours not have this service? We ended up going and went to Italy to get it done. I will explain in another paragraph the 5 w’s of lymphatic procedure soon.
Sunnybrook staff went over and above their duty to provide what they could. I have no words to thank her radiology oncologist Dr. Lisa Barbera for being there whenever the need arose. Dr. Barbera would be right there anytime Tatum needed her. We do need more Dr. Barbera’s for sure. The rest of the staff was right there as well. In the end, Tatum was in and out of many hospitals for Cancer between Sunnybrook (Odette Cancer center) and Mackenzie Health (Richmondhill, Ontario) at minimum 60 times. Yes, you can get garments and other help, but medical advice is not really there for actual lymph-edema surgery. Our government has failed us to take care of this lymphatic problem. As we all know, people with lymphatic problems or lymphedema have a plugged lymphatic system. There is primary, usually from birth or genetics and secondary from a number of causes. There is help and I will explain this later.
Tatum -out of nowhere, got cervical Cancer. This sort of just crept up (we think). Some people get it from environmental, others genetics apparently. I am not a Doctor by any means, but I am in the scientific side in the medicine.
I am a researcher when it comes to life and we were going to fix this problem. Well, it was the saddest day to be diagnosed with Cancer. We cried all the way to Sunnybrook. Straight from the gynecologists office to the appointment at Sunnybrook.
We had the best of a specialist in oncology. Her appointed Dr. Covens was the head professor. We were there at 3 pm and after consultation we were informed that Tatum would require a partial hysterectomy. What did we know- it was a 1 b stage. You are "so not knowing" what to expect. They accelerated Tatum's surgery because of her young age.
Stress is something that you will learn about as you travel through this maze of appointments. We had the perfect life. Tatum was a yoga teacher and partial fitness instructor. I was semi retired with a life of golf and good friends. We lived in the Caribbean 5 to 6 months a year. Tatum was just starting to compete in equestrian competitions. We only were eating organics for the last 3 years. How can one fathom this happen?
We went forth and she had her laparoscopic surgery work done at Sunnybrook. The partial hysterectomy was done. This all transpired in October and were granted “go card” to Caribbean with the knowledge that we had to come back in 90 days maximum for radiation. Coming back after ninety days for Radiation was the plan. We came back and did the 5 weeks of radiation in December and went back south. All seemed to be good and Tatum was taking tennis lessons in Sint Marten and she noticed some swelling.
We went to the local gyny Doctor and now were faced with upper swelling in one right leg. We weren't sure what to think, but the Doctor told Tatum “likely it was lymphedema”. We started doing research and were startled by a topic which neither of us ever heard of. I mean, we knew we had a lymphatic system, but it was complicated.
The swelling was mild but noticeable. Tatum had a small problem standing too long. It was all foreign new territory. The mid march was coming and we came back to Canada. We started seeing Doctors here and were dumbfounded that the government wasn’t supporting any specialist in this field. How could they not have a lymphatic Doctor? Is this possible? There were vascular surgeons, but no one really specializing in lymphatics. How could this be? We have a great GP name Lew Plaimm and he helped so much. Our GP got us an appointment with a top vascular surgeon who diagnosed Tatum with Lymphedema. The specialist recommendation was “WEAR A FRIGGING pressure garment forever”. Can you believe this!! I won’t mention the specialist name, but will tell about him later.
Tatum was not happy and being investigative we started to look for options. I spent about 200 hrs investigating lymphedema. We got pressure garments, we got lymphatic massages. We massaged her leg 3 times a day. We got cream and I kept looking and looking. It was evident that after all my investigation that, there was one man and his son who performed this. Now, you must know that I looked hard and close. The man who was renowned for this was one of the pioneers of this. He had performed a procedure called Lymphatic Venous Anastamosis or LVA. Dr Campisi had written tons of papers and I read them on PUB MED. He was teaching surgeons how to perform this with a special microscope. We decided that we would seek the services of Dr Corradino Campisi in Genoa Italy.
We made arrangements to talk with the surgeon’s office and we were ready to move forward. We sought help from the provincial government for a program called OOC funding or Out of Country. It was a lengthy process. We knew the surgery in Italy would cost 40,000 Euros and 25,000 Euro for the private hospital and we were prepared to pay.
It was now November and we were waiting to have the appointment with the good Dr. Campisi. We knew we were making the right choice. After all, you can get more money, but not more health. We kept putting in our application to the Out of Country and they kept sending back letters denying us with ridiculous questions that never gave us an out. The questionnaire wanted to have a specialist verify that the procedure sought was (1) necessary? (2) Not available in Canada? (3) Was it life threatening? We kept answering the questions only to get more denying letters back. They asked that more than one specialist sign off on the file. We sought the top vascular specialist input and here is what he said to me.
The best vascular surgeon in Toronto indicated to me verbally personally. “I won’t’ put my name on the application”. Can you friggin believe that this man would not put his name to the application because; he didn’t want to ruin his reputation just to say it was necessary. Go figure.
We decided we were doing it anyways. We rented a top hotel as; you need to be in Genoa for minimum one month.
Tatum arrived there in March and had the operation done. It was successful and she was so happy to have her proper leg back. The recovery took longer that it was suppose to, but the doctor’s son Corrado Campisi eased Tatum thru the final days. They had done it, no more swelling no more pain standing. She had a constant smile. They even lipo the area to make it perfect. Tatum now had her legs back.
We came back to Sint Marten and decided to stay for the summer as the routine is to keep you leg moving and swimming was the answer. We also purchased a lymph press for $7,000.00 in Italy and brought it back. We still have it and it’s for sale to anyone who wants it. Cheap at $4,000.00 Canadian. Great machine and it worked every moment. Condition is perfect and works optimal.
Tatum evidently had the worst Cancer and she wasn’t cancer free. Her Cancer was Sqamous Cell Carcinoma.(Worst of any) It came back with a vengeance and encompassed her mesenteric arteries. We tried everything and it was sad and this type of Cancer does come back.
In a nutshell, I am saying that there is hope and apparently there is many surgeons who are performing this surgery in Untied States. Keep pressing your insurance company or your state to get it done. I witnessed with my own two eyes the results. I know people suffer with this debilitating disease, but seek and trust an operation. Follow it to a tee. Wear the garments and there is a chance. I hope this has helped someone. If anyone wants the lymph press and pants, I still have them for sale. The model is LYMPHA PRESS OPTIMAL GRADE CL11 and LYPHA PRESS PANTS.
Born with Lymphedema
Secondary Lymphoedema right leg just had my LVA operation 
Daughter born with congenital lymphedema - any advice or information please would be a massive help.
Living in the U.S. with Lymphedema seeking and seeking connections and resources
