The home team

Within a week of our return to California Joanne met with her two local lymphedema therapists. This is our home team. They have both met Professore Campisi, so there feels some continuity of care.

Karen at Dominican Hospital's Lymphedema Clinic met him in Sydney at the International Society of Lymphology congress in September. Karen is amazing. She is a one-stop-shop of therapy, knowledge, garment fitting, advocacy, bureaucracy-clearing, and professional kindness. She's also the only person who has done accurate measurements of Joanne's leg before and after surgery. Rather than our volatile and subjective assessments, Karen has the numbers. The leg is smaller and softer.

Sonja, who you've already met if you're following this blog, is Joanne's massage therapist. She met Campisi while observing Joanne's microsurgery in Genoa. Her report of the surgery is here. Sonja does a great "manual lymph drainage", which is what they call the massage technique that encourages lymph flow. Sonja is easy to spend an hour with: relaxing conversation, good technique, one of the enjoyable therapies. Joanne sees Sonja once a week.

Joanne is a compliant patient, which is not the same as a patient patient or a non-complaining patient. I don't blame her as she follows her daily regime: an hour in the lymphapress in the morning, two hours in the evening, one before dinner and one after dinner. She has joined a sports club so she can follow Campisi's directive to "swim, swim, swim". She takes her medicines, applies her salves, and cinches up the full leg ReidSleeve onto her leg for sleep. Joanne takes ownership of her therapy. It is something about her midwestern work ethic. Non-compliance is also not an option with the Sicilian in Prof. Dr. Campisi.

She maintains her full work schedule, on east coast time, and wears compression hose almost constantly. One day she wants to be done with the machines, appliances, garments, the hours focused on her leg.

She has visited her medical doctor, not a lymphedema man at all, and had all of Prof. Campisi's prescriptions re-written to the American norm. I'm not sure there really is an American lymphedema man.

We are fortunate to have Karen's and Sonja's support, right here in our dinky town. (Less than one-quarter the size of Genoa!) As an outsider, though, it seems to me that their labors in the lymphedema field are under-appreciated by the larger medical culture. In fact, the state of the art in lymphedema medicine in the United States seems as retrograde as the unworkable Italian Internet I was disgusted by. If thirty to forty percent of breast cancer survivors, among others, are at risk for lymphedema, it is amazing that information and prevention are not part of normal medical practice here.

I go back to my slow health care post and wonder if the problem is medical, scientific, political, or economic.

Back to earth

The return to La Selva was to soft greens and warm temperatures. Our transit time was 36 hours: one taxi, three trains, two planes, and a car. Genoa to Milan to Frankfurt to San Francisco to Monterey to La Selva.

When I told the local lady at our communal table at da Maria that we lived in the country, she dreaded our isolation. Fortunately my Italian wasn't up to telling her that I preferred that to having people to my left and right, front and rear, above and below me. All amidst 26 centuries of human dust and dander, and recent cigarette smoke.

Feeling soft ground beneath my feet reminded me that I had been pounding the lunar colored paving stones of Genoa too long. In fact, from a distance Genoa is the smeared grey stone color of the lunar surface. Hard, lifeless, alien, the New York of the 16th Century. Our home's rain-freshened soil was soft and breathed of life.

Back on earth we have regained perspective, moderating our highs of the "Judge only by the amazing results" posting and the lows of "Judge o.b.t.a. results part 2".

Our quick fix mentality has been moderated by the understanding that we have an opportunity in a chronic condition. Campisi offered the Italian version of "strike while the iron is hot" to describe the next six months. Compliant application of the lymphapants for three to five hours per day (five?!). Joanne has this machine. Swimming and other exercise. Slow release penicillin every two weeks and a diuretic every two days. At home the results of the lymphapants sessions are already clearly different and improved: a softer and reduced size leg. Really: I have seen this! We are chastened by our quick-fix exuberance but heartened by improvements that formerly non-responsive conservative treatments now bring. I look forward to the assessments of Joanne's therapists Karen and Sonja later this week.

Lymphoscintigraphy

If I had had a better presence of mind while I was in the hospital, I would have had been less glowing in my report to Greg about my postsurgical peek of my leg. I could see my ankle bones and veins in my foot but my leg was still not back to normal. My fantasy was that I would return home with a dramatically reduced leg and give away all my lymphedema equipment.

Realistically, I knew this wasn't going to happen.

I wish I had the picture of my lymphoscintigraphy to post on this blog because it made so clear the situation with my leg. Lymphoscintigraphy is a diagnostic imaging test that pinpoints the lymphatic blockage. A radioactive tracer is injected in each leg between the big toe and in the heal. This tracer gives off gamma rays which a PET scanner reads to create an image of what the heck is going on. My pictures show the superficial lymphatics (the part of the lymph system just under your skin) in both legs working pretty well. I think all my efforts with compression, massage, laser, etc. probably helped to keep the superficial system working and kept my edema from getting way out of control.

The deep lymphatics, however, was a different story. The image of my left leg shows a strong lymphatic flow out of the left inguinal nodes. Think a strong spray of water coming out of a garden hose. In contrast the right side was blank. Dark. Nothing. Nada. So, for the past 6 six years lymphatic fluid traveling up my leg would get to these inguinal nodes, attempt to pass through, but the road was closed. Permanently.

When I saw these images I feared that Prof. Campisi would say "Sorry. These nodes are shot. There is nothing we can do."

What he said instead was: "This is just what we expected."

Back to why the postsurgical fantasy was just a fantasy. Lymphatic fluid is protein rich and when it doesn't travel through your body the way it's supposed to it gets thick and gluey. Post-surgery, I have a path for the fluid to travel. There is now a way out. But I still have six years' worth of the thick, gluey stuff that is going to take some time to work out.

Judge o.b.t.a. results, part 2

Last night was the unbandaging. It could have been a movie from the 1930's, without the dramatic music, but still with the drama. At least for Joanne and me. And Campisi's studio is of an era. Ceiling fans, antique panelling, the ubiquitous genovese terrazzo flooring. Lilly was snipping and unwrapping as a professional, not feeling the drama at all.

For those not of the lympha-world, the bandages are compression bandages, a mummy-like wrap of the affected limb to encourage lymph flow.

This was the first complete unwrap since the hospital, when Joanne thought her right leg was the same size as her left, that her ankle bone protruded proudly, and that she saw veins in her foot for the first time in years. This was not the case last night. The leg seemed perhaps slightly smaller, but still big. The ankle bone was not an angle, but a bump, and it would be a strain to see a vein. Our shared word, later that evening, was "disappointment". This was not a miraculous quick fix.

On the positive side, the leg is much softer, no longer the taut drum skin that told Joanne something had to be done. The softness is encouraging: perhaps the remaining size is something that time and massage treatment can work away. Also on the positive side, the surgical wound is healing well. Corrado examined the wound, and kissed his fingers in that gesture to describe something beautiful, and applied new bandages.

Though the lymphatic-venous anastomoses technique is microsurgery, the surgical entry is quite large, perhaps eight to nine inches (21 cm), precisely at the junction of the leg and inguinal area. This does not seem to cause Joanne discomfort, as I thought it would. The entire procedure has been fairly pain free. The biggest discomfort was the enforced four days of bed rest and the intravenous drip at her wrist. The drip was removed after the second day.

Thursday evening Prof. Campisi outlined an extensive drug therapy for the next six months, mostly penicillin and diuretics that Joanne will describe, recommended "swimming, swimming, swimming", and made me promise on the bald brass pate of, I presume, Saint Francis that we would return in six months for a week of follow-up. I summoned my mature manly manliness and managed not to cry.

Joanne is up the hill at via Assarotti getting her last Saturday treatment for this round. We will meet there again with Prof. Campisi at 6:30 pm for a final briefing and six month release.

Tomorrow, Sunday, we will look at a couple of promising B&Bs for our May return. In the evening we will board the "Treno Germania Notte". It's an eleven hour trip that gets us into Frankfurt around 6am. Then zum Flughafen and then the big freedom bird back to gli stati.

The chamber maid has come and I've moved to the living room, actually a part of the Hotel Cairoli lobby, to give her space to work. She is from Nigeria, and is pretty and nice. In Genoa the most frequently heard speakers of English are Nigerians, identifiable by their accent. In addition to their work motivation and gratitude for opportunity, they bring this language skill to the job market. On one bus ride to the Villa Montallegro a Nigerian woman was talking on her cell to what sounded like a sister back in Nigeria. The repeated response to what she was hearing was "I'm sorry for your life". "I'm sorry for your life."

Casa di Cura Villa Montallegro

I've experienced three hospitals so far in my life. Villa Montallegro is, by far, the nicest. All private rooms, dark and quiet at night, pretty decent food, each meal presented on a white linen cloth with an entire complement of flatwear.

This is not where the ordinary Italian using the national health system goes for their lymphatic surgery. They're at San Martino, in shared rooms and wards. Foreigners will pay the same rate at San Martino as at Montallegro, so why not go first class? Wait... What did she say??? The ordinary Italian has access to lymphatic surgery??

Yes. This is what I learned in a conversation with Prof. Dott. Francesco Bocarrdo. The same team that performed my surgery at the private Villa Montallegro also does 4 lymphatic surgeries a week at San Martino, the public hospital associated with the University of Genoa.

Private patients come from around the world, and have included at least one US physician. Yesterday at the clinic I met the daughter of the first Chinese client. Most foreigners will follow the same private and public mix that we have, pay full rate, but it will still be less expensive in raw terms than in the United States.

Bocarrdo went on to tell me that other doctors within Italy are also performing LVA (lymphatic-venous anastomoses), although many are still using a lymphatic-venous connection technique that the Campisi team stopped using years ago. Campisi's newer connection technique is less likely to fail. I like that.

So, if LVA surgery in several forms is available so widely in Italy, why does no one in the US perform the procedure? Dr. Boccardo could not really say why. He speculated that some of this has to do with the general lack of focus on the lymphatic system by the medical community. Part of it is due to a lack of funding for lymphatic research. But Dr. Boccardo said that these days he is finding more receptivity to their LVA technique in the US than in many parts of Europe.

Here's an interesting bit of history-- while the venous and lymphatic system were discovered at roughly the same time, the lymphatic system is so delicate that it basically disappears at death. It could not be studied on cadavers.

Dr. Boccardo also told me that in their experience the sooner LVA is done after lymph node dissection, the greater the success of the surgery. Less time is needed in compression bandages before surgery and less time after surgery. Maybe when Campisi and Boccardo can demonstrate that preventive LVA after lymph node dissection has merit, it will begin to be performed in the US.

Sonja's eyewitness account of the LVA microsurgery

We were very glad to get Sonya's email, and shed a few tears of thanks while reading it. Joanne is out of the hospital. We walked slowly to da Maria for lunch. Wonderful home-style food and friendly locals! Joanne is napping now. Here is Sonja's account:

Joanne’s Big Fat Italian Microsurgery

First and foremost I’d like to thank Joanne and Greg for giving me this wonderful opportunity! Being under anaesthesia, being operated on, the uneasy phases before going into and after coming out of anaesthesia - all of these are surely things not everybody would be willing to share. Thank you again, Joanne!

And Greg, you were a wonderful host for Matt and me. We really enjoyed the time we spent with you! And thank you both for allowing us to stay at your palazzo!

Observing surgery is a rare experience for most of us. Due to my education, Joanne’s surgery was not the first one I observed, but it was the one which made by far the most beautiful impression on me. I was very impressed and touched by the smoothness of this team. Six to eight hands close together in this small space, weaving artfully in and out of each other. Often words were unnecessary. Every move was effective, executed with total precision. An incredible level of concentration was maintained for the entire duration of the surgery, yet there was no uncomfortable tension. This is hard, hard work and I have great respect for those who can perform on this level. When Professore Campisi states that he loves his work, I have not the slightest doubt about it. You simply have to love this work to be able to do it the way this team does!!!

In the following, I will try to recall my memories as to what I observed during Joanne’s surgery. There will also be a few curious details that may not be professionally significant, but that’s just me. Perhaps you’ll enjoy a little lightness here and there …

The surgery is scheduled for 2pm. When I arrive at around 12:30 pm, the anaesthesiologist is briefing with Joanne. He is a small guy (smaller than I am!) who evidently has a good number of years under his belt. He is easygoing and creates a feeling of "don’t worry, honey, I was already doing this when you were still crawling around in diapers".

Joanne gets an injection to prepare her for the anaesthesia. It takes a little while to sink in. Meanwhile she praises the advantages of her new Kindle. She is very convincing and I feel like she could maybe have a bit of income at the side here to make this big fat microsurgery less of a burden for her wallet …

At 2:02 pm Professore Campisi arrives in the room. Yes, I am allowed to watch, and no, I don’t have to stay the whole time if for some reason I don’t want to or am not able to.

The operating team is 3 doctors and a male surgery nurse. Then there is the anaesthesiologist (and his son, who takes over soon after the surgery starts). There is also always one other guy there - either Matte or Marco - helping by organizing, clearing space, bringing stuff in and out. Joanne and I are the only females present.

There is some delay getting started due to Joanne’s venous situation. None of the veins in the left arm will work. The right arm in the elbow won’t work either. Finally the Professore (a.k.a. "Proffe") takes over and installs the IV into her right wrist.

Professore Campisi wants music in the operating room! One of the others rolls his eyes, but then there is Radio Nostalgia again! I am astonished that at my age I actually like this station. Nostalgia in Italy seems to set in much sooner than it does in Germany or California. Radio Nostalgia doesn’t play music from the early parts of the last century, as I would have expected. We listened to pop songs from my teenage years, most of which I knew, and some Italian hits - maybe even some contemporary ones. (Maybe I'm just getting old?)

Then follows a bunch of preparation: more shaving, covering of the areas not to be worked on, sterilization of the exposed area. Then Joanne is given three injections of blue dye into her upper thigh. This will be necessary later in the surgery to find the lymph vessels, since these are very small and transparent.

At 3:31 pm Joanne’s groin is finally cut open. For the next two hours, the team is busy clearing out fibrotic tissue, including lymph nodes. I am astonished at the degree of fibrosis.

I am standing near Joanne’s head, keeping an eye on her vital signs. At one point I observe a blood pressure reading of 81 over 44. The anaesthesiologist is unconcerned. In my mind I talk with Joanne. She seems fine.

The "micro" part of the surgery is next. It lasts maybe 50 minutes. I am told to leave my position at Joanne’s head to stand where I can better see the screen which shows what the team is seeing through their microscopes. Professore Campisi establishes several anastomoses. Sometimes it is hard for me to see on the screen what exactly he is doing. I wish he would talk more, but I don’t want to interrupt and ask questions. I can see how small and delicate the lymph vessels are. If there were no dye, I would not be able to make them out at all. Amazing that such an unassuming, humble, almost shy system has such an important role to play in our survival!

The newly made connections get flushed through several times and then, all of a sudden, it is over. The microscope is pushed away, tissue layers are sewn up.

The anaesthesiologist calls to Joanne several times: "Miss Bauer, Miss Bauer, it's over." (With his cute Italian accent!) Finally, when I call out "Joanne, wake up!", she opens her eyes and turns her head to me.

I feel a great tension falling away from me. At the same time an incredible exhaustion takes hold of me. My body aches, my head throbs, I am tired and hungry and unspeakable happy at the same time, thinking to myself: "We did it!" We??? A wave of gratefulness rolls over me. When I poke my nose into the post-surgery meeting of the three doctors to thank them and express my respect, I can hardly find words. I am truly touched. I am so lucky to have witnessed this!!!

Judge only by the amazing results

There were four witnesses to Joanne's un-bandaging. I was not one of them. They were the Drs. Campisi and Boccardo, an unnamed but surely beautiful nurse, and Joanne. The only eyewitness account I've heard was from Joanne. She said she saw her ankle bone and veins in her right foot for the first time in years. Her right leg looked the same size and flaccidity (in a good way) as the left, below the knee. Then her leg was re-wrapped.

Prof. Dr. Campisi said "I'm happy for you, and very happy for your husband".

Joanne has been flat on her back since Tuesday,

gorging on three meals and a snack per day of fairly decent Italian hospital food. No, there is no wine, at least in Joanne's diet. They brought me a pretty good macchiato for merenda today. I'm almost always asked if I want to stay for dinner or the night, which I don't do. It is a €13 taxi ride out to the Casa di Cura, and the 43 bus stops at 8pm.

I moved our clothing and food and equipment by foot from via San Donato to via Cairoli in four trips. Today I paid off Halldis with a credit card, after our wire transfer of September mysteriously went astray. (Banca Sella, watch for the blogger's wrath.)

The move to via Cairoli has been like a change of countries. The new apartment is almost antiseptically clean, so you think of a monastery or a hospital or Germany. The heat and Internet work.

The noise calendar is almost exactly opposite of via San Donato. It is quiet at night, but noisy in the morning. Today human hubbub drew me out of bed and to the window at 7:30am. Looking out, I was verily amazed to see the largest baroque architectural scroll in Christendom filling the initial view. Michael Graves? Bladerunner?

Loud voices drew my eyes down to the steps of S. Fillipo. At first I thought it was a homeless feeding, but the elderly crowd of dozens was merely loudly socializing while awaiting the opening of the church doors for 8am Saturday mass. Sunday morning here might give via San Donato's nights a run.

Joanne's last surgical drain was removed today. Dr. Boccardo said Sunday is catheter out and a stroll day. Monday morning at 11 am is the scheduled hospital release, earlier than we thought.

Next stage: post operative care, about which we know little. Sonja was able to talk on her way out of town for Milan and Muenster Wednesday to Daniela Campisi, so there is a care continuity. We have all of next week to learn more about it. Slow medicine.

Listen brothers and sisters: it looks like Campisi's LVA works where previous methods have not. Mirabile dictu.