Setback continued

So last Monday I met with Dr. Jiang and determined to have the growth removed the following day. Mohs surgery is quite an improvement in the treatment of skin cancers I have been told. Minor sections are removed under local anesthesia and a biopsy is done on the spot, if the cancer is still found, the affected area is the removed and another biopsy is done – this is repeated until a clean section is found. In my case this was the fourth time around, the wound is then sutured to minimize the scarring.

The following day I suffered from what could be termed an aesthesia hangover. The surgical area on my scalp had some minor pain, but the headache itself was much more painful. The doctors performed a biopsy on another section that appeared suspicious, the results of that biopsy are still in limbo . . .

On another front, the swelling of my leg is still proving to be a puzzler to the doctors. So far we have done a slew of blood tests, urine testing, an ultrasound on the leg to look for clots, all of the results find nothing out of acceptable parameters. The kidney specialist has informed me that although mine are functioning at about 50%, this is acceptable due to the high doses of antibiotics administered during my last admission to the hospital, and the anti rejection drugs I have and will continue to take for my transplant. The swelling and pain are receding, walking has become easier again – through no apparent change or treatment. All in all an acceptable condition for the ability to breath easier. . .

Minor setback

Well for the past several weeks my right foot has been swollen and painful. Went to the clinic last week, Dr. Yung ordered an MRI to check for clotting in my legs – negative. He then ordered blood work and a 24 hour protein urine test to check my kidney function. All of which came back normal, so what is wrong? Seems that I have once again perplexed the medical resources at UCSD.

I did find out when I was speaking with Suzanne Reed, one of my transplant coordinator nurses, that I am not the only patient who is undergoing such complications. I am perhaps the only one that had it start in one leg (the left) and have it migrate to the other. Ah, the joys of being unique.

On another front, I also learned that I have a cancerous growth on my scalp. One of the side effects of the drugs that must be taken to combat rejection is an increased sensitivity to sunlight and the increased chance of skin cancers. Fortunately, the doctors feel that this has been found in time and can be exorcised using Mohs surgery. I have a pre surgical examination scheduled with Dr. Jiang on Monday. More on this to come . . .

Another First:

Well, thanks to the generosity of my cousin Karyl, I can now say that I’ve been to a NFL football game! Matt, her husband purchased tickets for their family of three, my father & me to go to the San Diego – Philly game yesterday at Qualcom Stadium here in San Diego. My sister and her family joined us as we met at 10 am to go tailgating in the parking lot. My sister knows the promotional VP for the Chargers and got us tickets in the Club Level (@ $200 a pop), we discovered unfortunately upon arrival that this did not include parking – as we were split up on arrival there, Kathy & Matt’s cars were admitted but they were the last ones, dad & I circled, he dropped me at the front gate and found a space about ¾ of a mile away.

Using our cell phones, we were able to meet up where Kathy & Matt parked to do our lunch and enjoy the experience. Unfortunatly I am at this time having some swelling in my left leg (think it is a drug reaction but the doctors will see about it later today) so I was using crutches. With that in mind 45 minutes prior to game time (1:05) I started in, and lucked out – a ‘Cushman’ cart cruising the parking lot saw me and picked me up, depositing me at my gate. The attendant there directed me to the elevator which got me real close to my seat. Everyone else joined me by game time and a good time was had by all.

With about 10 minutes left in the final quarter, Karyl, Matt & Matty left. Little did we realize that this was a very smart move. The rest of us started out after San Diego scored their final field goal. It took about 20 minutes to get to my sisters car (using the crutches, where were my friends and their ‘Cushman’ then?), and an hour to get out of the parking lot, another 45 minutes to drive the ¾ mile to dad’s car (if only we had taken mine with the ‘Handicap Placard’.

All in all it was a very good event, even though the leg is hurting today… Though I must add that it was in hindsight a good thing my friend who was awaiting her transplant was unable to come with us, the time frame would have exceeded her oxygen supply….

Courage

It takes a certain amount of courage to deal with life in itself, a bit more to deal with a loved ones illness or difficulties, more still to deal with your own. I have recently met someone that has taken it to a new level. She has faced her disease, decided to battle it, and in doing so has set some fantastic goals for herself.

She separated from her husband and son, moving in with her parents before her diagnosis. And now, has moved from her parents (in another state) here to San Diego to await transplant, without the support of family, knowing no one here prior to coming, hell she even left her car when she came.

Having gone through the diagnosis, preparation, transplant, recovery and then rehab with my family to support me was one thing. Having done it and looking back on it I am so thankful they were, and are there. It is hard to imagine the courage it took to come to a strange town, and under go the process without someone there.

I spent a very enjoyable day with her yesterday, we hiked through the upper section of Torry Pines State Park, quite a feat in itself as the trails are not flat, the views are fantastic really something to see. Throughout the whole ordeal she complained not once, we stopped several times to rest, and other hikers would pass, there would be looks as they’d pass when they would see her oxygen tank and cannula. She not only did not note those looks, but greeted everyone and maintained a cheery attitude (myself I remember cursing my inability to do such things and looking at the world through soured eyes not being able to do those things I once could). It takes a good deal of inner strength to be able to deal with life that way, more than I have.

Mortality

I went to a memorial service the other day, Cleo lived 17 years after her transplant, she inspired and gave hope to those both in pre and post transplant. It was good to see so many turn out on short notice too remember a person that gave back to those that gave her life. I had the opportunity to speak with her son Richard, who I had met earlier at one of the Holiday/Christmas parties. He was moved by the fact that so many came out to tell him what Cleo meant to them.

It also got me thinking of my own mortality. I am now just over two years post transplant, 50% of those with lung transplants make 5 years. Who will miss me when I pass? Sure my immediate family, but even then there seems to have been some distance that has come between us. I have no real close relationships at this time, have not allowed myself to grow close to any women. Almost if I am damaged goods - though I am determined to live my life and enjoy each day given by this selfless act from someone I never knew.

UCSD and their Post Transplant Program

So now it has been a bit over two years since my transplant. After our Lung Transplant Support meeting several of us started discussing why we chose UCSD, other facilities do more transplants. For me it was the fact that UCSD had what looked to be a complete program, there was Pulmonary Rehab to start with, that got you able to survive the transplant and taught you survival with your pulmonary disease. Meeting with the surgeons, and seeing their credentials, (along with the fact that the program in Phoenix that was starting up had all UCSD personnel in it) and their success rate. Then there was the post transplant program, Dr Yung and his staff managing and monitoring your health after the operation was completed. All throughout the process there is the Transplant Support Group, which is run by Karen Matthews (UCSD Social Worker), and is for both pre- and post transplant patients.

We meet twice a month during the day (1st & 3rd Mondays), this meeting is for the patients only. Post transplant patients can counsel pre transplant patients, and relate experiences to one another. Notifications of upcoming events, and health advisories are given. Care givers have their own meetings. Every other month there is a combined evening session for patients & caregivers with a speaker on relevant topics.

Cooking

I have always enjoyed cooking, my mother and grandmothers used to say if you enjoy eating then you need to learn how to cook. Cooking is not hard; it does take time to ‘play’ with various recipes until you get things to your own individual taste. Way before I became ill, friends would always seem to show up when I’d be cooking a big meal, holidays were always crowded, first at my house on Schooley’s Mountain (NJ), then at my house in Phoenix. When I came to San Diego it changed a bit, I was competing with my sister for the holiday meals, and still do not have a group of friends as I did back in Phoenix or NJ.

I still laugh about the misconception that Thanksgiving & Christmas turkey meals are hard to do. The biggest thing (to me) is allowing enough time for the bird to cook (I always stuff the bird, it gives the stuffing more flavor and keeps the bird moist, and get a big bird – leftovers are not that hard to dispose of). Choosing the sides and desserts was often harder than making the meal – there are those mandated by family tradition – mashed potatoes, creamed onions, candied yams/sweet potatoes, cranberry sauce…. and then their were favorites such as pecan pie, pumpkin cheesecake (thank you Mara). Whatever the menu, I always try to make extra, just in case someone brings someone, or a friend just happens to show.

In recent times, I’ve started cooking a fair amount of Italian meals, don’t know why, just kind of happened. Puttanesca (spaghetti sauce rumored to have been what the cooks would make for the street girls from what was laying around the kitchen), Veal Scaloppini with Mushrooms in wine, Osso Bucco to name a few. They are not hard to do, and actually do not take all that long to prepare. And cost a hell of a lot less than going out for the same meal!

Here is my recipe for Puttanesca (for 2 with leftovers)
Ingredients:
2 boneless, skinless chicken breasts sliced
crushed garlic (about 2 cloves)
olive oil (bout 1/2 cup)
two cups of tomatoes (about 6-8) cubed
bunch green onions sliced
capers (2 tablespoons)
anchovies (a 4 oz can)
basil & oregano to taste
crushed red pepper to taste
black pepper to taste
tomato paste (small can)
black olives (can sliced 8 oz.)
Cook sliced chicken in 1/4 cup olive oil and 1 clove crushed garlic till pink is gone. Add rest of ingredients and simmer for 20 minutes over medium flame (burner). Serve over pasta.