Surgery Notes from July 23 (2)

Notes with the doctor – After surgery (about 1:30 pm)
My mom asked me to post this for all – Michael

Mom is out of surgery. The doctor (O’Brien) came out and talked to me. She said it went really really well. There are four clips in mom’s eye around the tumor forming a box (3d). The clips are 1.5 mm in size, about the size of the tip of a pin. The clips are placed so that they are inset from the four corners of the tumor (which is actually round), if you can imagine the tumor being square. It was basically a very successful deal. There is one very small concern. The clip in the front towards the center of the eye (front right as you look at mom) might be too close to the front of the eye. i am not sure of the anatomy, but the clip might intersect with some portion of the eye, which mom could feel. Dr. O'Brien said the clip 'might' bother mom (as in be irritating), and it might fall out. The clip is only useful for the radiation treatment, which is in 3 weeks. So really this is only an issue for the next couple of weeks. If the clip 'falls out' then it just hangs out in the eye and causes no harm or issue. If it doesn't fall out and is cause for irritation, Dr. O'Brien recommends that she come back to here and have it removed. Apparently this is a very simple procedure where they basically take it out. No big deal.

I asked Dr. O'Brien about the probability issue that she told mom before she went into surgery. She laid it out for me much more clearly. It goes something like this:

• 97% of people who under go this radiation treatment have their tumor killed
• 75% of people keep their eye
• 50% maintain some sight.

The percent who don't in all cases (3%, 25% and 50% above) all have complicating issues like glaucoma, diabetes, and/or are much older than mom. In short the prognosis for mom is really really good. The dr. really shied away from any notion of mom regaining sight, because she just can't predict it, even though there is a 50% chance of maintaining sight (how much is an issue). With mom, her tumor has a high degree of vascular involvement and is close to the front of the eye, meaning that it could 1) continue to bleed (which is causing her vision loss) 2) break through the cornea or block vision. The dr. couldn't tell, but was really positive about the procedure and mom's outlook.

In all a very successful procedure.

Surgery Notes from July 23

Notes with the doctor – Before surgery (about 11 am)
My mom asked me to post this for all – Michael

Mom and I waited for about an hour in the ambulatory surgery center waiting room. She was really calm all morning, and had a very positive attitude. It was almost like there was not going to be any real issue with the up coming procedure.

She was called back, and then about 5 minutes later they allowed me to come back with her. She was in a hospital gown, and they had her sit up on the bed, and covered her with warm blankets. This made her feel really comfortable.

After taking initial vital signs, a nurse dilated both eyes. They dilated both eyes, so the doctor (O’Brien) and Fellow (Tsai) could double check the eye to operate. In fact they all (both doctors, and two nurses) went over several times individually with mom which eye they were going to perform the procedure on, made mom sign a document saying which eye it was, and the doctor even initialed (in marker) her forehead above the right eye.

The interaction with Dr. Tsai and Dr. O’Brien was again superlative. Both gave mom and I ample time to ask as many questions as we could. They talked about how there were going to sew these markers on the eye; how the markers were not metallic so they wouldn’t set off any metal detectors; how the markers would be left in her eye permanently; how there would be stitches from the surgery that would dissolve; how mom would observe mild discomfort in the eye tonight and tomorrow; how they have ordered as much pain medication as mom wants for tonight; how the physicist would be in the surgery with them to know mom as a patient and see where the tumor was for the photon phased radiation; how mom’s eye would look like trauma occurred (e.g. after all they are operating on her eye), including swelling, redness, blood in the eye and perhaps even black and blue; how she would be wearing a patch tonight, but she should only need sunglasses tomorrow; how the radiation treatment would not have any other affects (no fatigue, nausea, etc) other than killing the tumor; how the MRI from the other night helped confirm (along with the eye exam, liver function tests, and chest x-ray) that this tumor is a primary site. Dr. O’Brien was sure (within probable terms) that mom is clean of any other cancer. . I mean these guys were really thorough and very reassuring.

Two things really struck me in the discussion with the doctors. First, both mom and I asked again about when we might know if the photon phased radiation was successful. Our assumption was that she would not know until the follow-up appointment in January. However, Dr. O’Brien said her experience is that this treatment has a 97% success rate. We should think of this treatment as killing her tumor. Both Pat and I remembered from our first meeting with Dr. O’Brien and Dr. Tsai that this had a 50 / 50 probability. We now cannot recall explicitly if that was right on (due to the size of the tumor), or if the 50 / 50 was her eyesight returning. I will follow-up with Dr. O’Brien when she comes out to talk to me post surgery.

Second, Dr. O’Brien commented on how positive a patient mom is; her willingness to do this treatment so quickly; her calmness and assuredness. Dr. O’Brien mentioned that it has been clinically shown that being positive has an increased rate in beating any cancer. Again, this doctor is fantastic.

At last the two anesthesiologists came in to dose mom up. One of them asked my relationship to mom. After finding out I was a son, she asked “Are you too old to kiss your mom”. I laughed, and said “No”. She replied, “Good. Now kiss her”

They showed me to the waiting room, and wheeled mom down the hall.

Pre-surgery reflections

Today is Wednesday, July 18, and I find myself continuing on this journey of treatment for ocular melanoma. Tomorrow I will travel to San Francisco for my pre-op appointments, that will include a history and an MRI. It continues to amaze me how quickly all of this has occurred, for it is only 4 weeks ago tomorrow that my first and only symptom (loss of sight in my right eye) appeared. The treatment I have chosen is Ocular Proton Beam Radiation. This treatment is preceded by a surgical procedure call Tantalum Marker Ring to mark the exact location of the tumor. This surgery is scheduled for Monday, July 23. I will be staying in San Francisco with my son, Kevin,for the days between the pre-op and the actual surgery. Today, in dialogue with the clinic, I was informed that the surgery in 2-2.5 hours, somehow longer than I had expected. I will have a light general anesthesia…I did not realize that there was such a thing as “light” general anesthesia…more education for me.

During these days in San Francisco, my brother, Tom will visit for the day, and my sister-in-law, Ethel, will be in Sacramento sometime after the first of August to be with her daughter, Kristi. My sister, Jeanie will help me move back into my home next week. I am not supposed to be lifting or moving things….something that is very difficult for my independent nature. The young woman, Kirsten, who has been staying in my home, will be moving into her new place this coming weekend. Things have a way of working out, and I continue to see God’s love and grace as each day unfolds.

My sons, continue to extend their support and love as each new event unfolds. Family is there to think of and provide for the things that I have been unable to do. My niece, Kristi and her husband Brian, have worked with his father and my son, Brian to see that my car will be transported back here sometime in August. I am very grateful for their efforts and their expertise in these matters.

Spiritually and emotionally, I am doing well. This week, there have been very specific tasks to accomplish (chest x-ray, blood work, and being sure that the results arrived at the clinic in San Francisco in a timely manner), and that has helped keep me stay focused. My daughter-in-law, Cath, and my women friends have transported me where I have needed to go, and have listened to me as I process feelings and identify what needs to be accomplished next. It is so much easier to stay with the tasks that sit with the feelings. I do feel optimistic about this course of treatment, and after the time spent in the ophthalmology clinic at UCSF, I have the utmost respect for the work that they do, and the compassionate care they give their patients and families. Again, I feel very blessed to be in their care….especially in such an expedient manner.

Coming back to my feelings, as I have said before, I would prefer to be with someone else who is experiencing this, yet clearly I am the patient. I am sad sometimes, yet, the sadness comes and goes…it does not stay for long periods. There are times when I cry because I do not want to loose my sight nor my independence…yet the extent of those losses are not yet totally known. And yes, the fears of not knowing what lies ahead for me do come, but they also do not stay long. Last Friday’s testing was exhausting, and it did take the weekend to recover emotionally from the tests, the conversations with the physicians, and also the reality of the process. There is much to be said for the positive attitude that was present in the Ophthalmology Clinic…they have an expertise in the treatment of ocular melanoma, and they present the data in a compassionate, reassuring manner, yet realistic manner. This gave both my sons and myself hope and for this I am grateful.

Along with the unknowns, I feel very strongly that I am being supported and carried through this process. I find great comfort in God’s continuing grace that is visible for me in the smiles and loving words of my sons, daughters-in-law and grandchildren. My siblings are doing many little things to support in the known and the unknown, and for that I am grateful. I know that the prayers that many of you are offering for me are the basis for this unwavering support I feel…at times it is almost as though I am being carried physically and spiritually….that the ocean is being parted that I may safely walk through.

Thank you for the prayers, the cards, and the telephone messages. I am most grateful for this support and on-going love that each of you are extending to me. May God bless each of you with peace and love.

Path for treatment

My mom has asked my brother Pat and I to write up a factual account of her appointment at Beckman Eye Clinic (link) at UCSF yesterday. Below are our collective notes.

We arrived at UCSF Vision Center for an 11:30 appointment. While waiting we were told how the day would progress. There was a sign in / registration period, initial screening, a sonogram on both eyes, photography of both eyes and two in-depth consultations one with the Fellow of the clinic and one with Dr. O’Brien the clinic lead.

Mom, Patrick and I were extremely impressed with the level of care. Everyone was exceptional, from the receptionist to Dr. O’Brien. I cannot stress this enough. We were so impressed with their depth of knowledge and attention to mom’s care. Mom described it as sensing a feeling of hope upon entering the clinic.

The initial interaction was a simple eye test, some health history and then dilation. After Mom’s eyes were dilated we sat and waited in a room for the sonogram. The sonogram technician had been there doing this one task for nearly 20 years. She was operating with a brand new machine which took sonogram digital movie file of her eyes. She was able to measure the width, length, and depth of the tumor inside mom’s right eye. She was very gentle with mom, attentive and answered the litany of questions we came up with. This sonogram was much less invasive than the one she got in Montreal. A second set of sonograms with the same technician was able to measure depth and density of the tumor. This set confirmed that indeed the mass in mom’s right eye was a tumor. About halfway through the sonogram Pat showed up and spent the rest of the day with us. The sonogram lasted over an hour, and mom was a trooper through the whole thing. By the time we finished with the sonogram it was close to 3pm and we had our first consultation.

This consultation was with Dr. Tsai, the clinic Fellow. Dr. Tsai was sensational. He started with, “I understand you were a Chaplain …. , thank you for your work!” He confirmed that Mom indeed has a cancerous tumor, diagnosed as ocular melanoma and he gave mom great information. Things like

• Melanoma is a cancer of the body’s melanin cells (cells containing color or pigment), and it not just skin cancer.


• 6 people in a 1,000,000 are afflicted with ocular melanoma


• Nothing about mom’s genetics or lifestyle can specifically be attributable to the occurrence of this cancer


• There are two centers in the US that treat this; UCSF and Harvard


• There are three main treatment options 1) removal of the eye, phased proton radiation, and a plaque radiation. This clinic specializes in phased proton radiation.


• He also confirmed that there is a spot on mom’s left eye which is a birthmark (also called a nevis). It is unlikely that this birthmark is cancerous, and the doctors state that there is an exceedingly low chance of a patient developing cancer in one eye after having cancer in the other. Although it is technically possible, Dr. O’Brien, the chief physician at this clinic has never seen a patient in her career where this has happened.


• The tumor in mom’s right eye is classified as ‘big’ for two reasons. It is long and it is thick (about the size of a chick-pea). For comparison the eye is about the size of a quarter.


• Due to the size of the tumor, the plaque treatment is not possible.


• The phased photon treatment has about a 50% chance of killing the tumor, due to its size. The risks are minimal, but there are potential side effects.


• The potential side effects are: 1)dry eye 2)damage to the optic nerve 3)glaucoma (a painful condition of increased pressure behind the eye).


• If the radiation treatment does not sufficiently kill the tumor, the doctor’s will remove her eye and replace it with a prosthesis.


• There was no way of estimating or knowing if her eyesight will return after the treatment.

Overall, this is positive news for several reasons: 1)Mom is at one of two clinics in the country that treat this kind of cancer. Patients come from all over the US for treatment here. 2)the eye, like the brain is unique in that it is isolated and protected from the rest of the body, dramatically reducing the chance that the cancer will spread.

Mom has decided to pursue proton radiation treatments. The clinic schedules these radiation treatments every four to six weeks, and while there is no urgent reason to begin the radiation therapy, Mom has decided to receive the treatments the week of Aug 6. She are several steps to prepare the treatments, including chest x-ray, MRI, blood tests and several pre-operational appointments in the next two weeks. She will then have a preparatory surgery to place markers on her eye in order to focus the radiation at the tumor. The surgery requires a general anesthetic and she will stay in the hospital for one night of recovery. The radiation therapy is scheduled for two weeks after the surgery in order to let her eye recover from the surgery.

The radiation therapy will occur over four days at UC Davis. Each treatment requires a two hour visit at the hospital, but she is only exposed to the radiation for less than two minutes each time.

She will then see Dr. O’Brien at the clinic for follow ups every six months. There was no time element for how long the follow ups would continue.

An unexpected event and family support

Last Sunday morning was one of those beautiful Sacramento summer mornings. The sky was blue and the air on the cool side. My son, Michael, and I attended the 7:30 mass at St. Francis and then stopped by his office before going to the neighborhood Starbucks for coffee. Well, as life has been occurring for me, that plan for coffee was delayed several hours. Instead we found how helpful and concerned some of the downtown Sacramentans are. As I lay flat on the sidewalk with the contents of my purse spilled around me, blood streamed down my face from a cut on my forehead. Yes, I fell, I think tripping over my own feet. My sunglasses cut my left forehead and the other scrapes were minor. Off to the emergency room at Mercy General Hospital; again the irony to be a patient where I once supported patients and their families. The care was outstanding and not too long of a wait.

Today, my left eye looks as though an old lady overshot the lavender eye shadow on the left eye and totally forgot any makeup for the right eye. The stitches are dry and healing well. Again how fortunate I am because my glasses did not break and cause any other injury. My humor about my physical abilities have returned. I can assure you, that was not the case on Sunday.

Michael and his wife, Cath, have been wonderful to me welcoming me to the reality of their family and providing a safe place as I await my doctor’s appointment tomorrow. Food is purchased and served, I am driven where I need to go, my grandsons tell me how beautiful I am after a haircut, things that have broken get fixed (cell phone and laptop). My other children and their families continue to be present to me in many loving ways. All my children engage me in probing conversation that enables me to articulate my feelings and reflect on the realities we are facing. Their phone calls express their deep concern for my well being. They are also working on returning my car to California; no small feat.

The miracles of this week are:
1) the woman I met while having a pedicure, who spoke of encouragement from her doctor to continue driving even though she had only one good eye. She was an angel of hope for me, as one of my fears is not being able to drive again.
2) Receiving the Sacrament of the Sick after a weekday mass at St. Francis with a woman who was having surgery the next day, She happened to have retired as a chaplain from Mercy Hospital several years before I started.
3) The arrival of my granddaughter Isabella (age 12) here in Sacramento to spend a few days while her father Patrick is on a business trip in San Francisco.
4) Having a sense of humor about my Sunday morning fall.

Both Michael and Patrick will share the experience of meeting the doctor at UCSF tomorrow. We have many questions regarding the diagnosis I have been given and the potential treatment plan. Then the three of use shall all share dinner with Cath, Isabella, Kevin and Mandy.

Yes God continues to reveal his love and compassion as I walk this path. I have only to keep my eyes and my heart open to receive the grace to stay balanced and at peace. It is not the end of my life, it is the beginning of the next segment. I know the fears and the insecurities will again resurface and yet tonight my heart also feels gratitude.

Once again I thank you for your calls, prayers and outreach for my family and myself. May God continue to bless you in all your endeavors.

Moving ahead into the unknown

Cancer – a word I frequently have heard, yet it has never had the personal ring it or the sting it can bring to the heart. This week has definitely revealed the tangible things that say, “Leni, it is now becoming a reality for you.” July 5th brought the phone call from the oncology department at the University of California San Francisco (UCSF) to register me as patient and to schedule the appointment. Then yesterday’s mail brought the letter with the heading ‘Oncology Department’. This is supposed to be happening to someone else; not myself the Chaplain, who has accompanied others on their journey of cancer and its wide variety of treatment.

Yes, God this is my truth today. I am moving a head very quickly within the California medical system. The appointment scheduled for next Friday July 13th is with one of the two physicians on the west coast who treat this diagnosis. The doctor comes very highly recommended and there is great consolation in that, yet the fears began to set in with this scheduled appointment. The fears center on how will this affect my eyes and my lifestyle. Will I loose sight eventually in both eyes? Will I loose my independence? Will I experience pain of other physical symptoms? All are unknowns as is the choice of treatment.

There is such irony for me to have melanoma in my eyes. For throughout my ministry as a Chaplain, it has been my eyes that have allowed me to form a spiritual assessment with the patients I have been privileged to walk with. My eyes have allowed me to see the love between a husband and wife or a parent and a child. They have allowed me to see and understand the physical or emotional pain of another, and they have allowed me to acknowledge when words have no meaning and the emotional gift of presence is what the individual was asking for. Yes, my eyes have been the connection with another human being and they are / have been my window to recognize another’s soul. Will my eyes now reveal my soul as I move into the realm of this disease? Will I allow others to see and share my fears?

I know I have been given tools that support me in the unknown and teach me to live life fully each day. They give me the courage to not stay with the questions rather to trust on a very deep level the faith I have been blessed with. I have been taken care of even with all the seriousness of this condition. I have an appointment with a specialist three weeks from the day of my first doctor’s visit in Montreal. No, I don’t like this aspect of my life. And yes it is happening to me, and I will not hide from it, nor will I deny it. I will move with all dimensions knowing that God is in charge, that I have a loving and very caring family who are present at every turn of events, and many friends are supporting me in whatever way they can. I have only to ask; something I have not done very often. Yes I have been blessed and with time I shall deal with the realities, the unknowns and the fears.

Writing this out gives some purpose to these realities and it brings comfort to my unsettledness that can and does take over my spirit and my body. Thank you God for your presence and for my sons and the encouragement they continue to give me to write.

A new diagnosis

Dear family and friends,
These past few days have been full with doctor’s visits and the realities of being a patient rather than a healthcare provider. Yesterday, July the 3rd, a second opinion confirmed a probable diagnosis of ocular melanoma in my right eye with an additional pinpoint spot in my left eye that will need to be observed. It is my understanding that this is a rare disease that is treatable and requires the care of oncology specialist. I have therefore been referred to the University of California San Francisco Medical Center for further diagnosis and treatment. I should know by the end of this week when that appointment will be.

I have received excellent medical care, both in the United States and Canada. My first symptom was decreased vision on June 21st while visiting my son Patrick and his family in Montreal. I was referred to the Ophthalmologist department at the Royal Victoria Hospital in Montreal on June the 22nd. On June the 28th was presented with this diagnosis by a retinal specialist. He suggested that I return to Sacramento soon and obtain medical care. He spoke directly with my eye doctor here in Sacramento, sharing his medical opinions. I returned to Sacramento on June the 30th and began seeing a round of doctors on July 2nd and 3rd. My final appointment was yesterday afternoon with Dr. Patel, with the Retinal Consult Group at Mercy General Hospital. He was marvelous to me and Michael (my son). He was gentle, compassionate and very direct. He confirmed the diagnosis that I had been given in Montreal.

I strongly feel that I need to believe that it is cancer until proven otherwise. I do not want to give myself false hope. I shared these feelings with Dr. Patel.

He then began to contact the Oncology Department at UCSF. Now realize that this is 4pm on the eve of a holiday. He was unable to contact the physician he wanted at that time. However we did hear back from Dr. Patel at 8:15 pm. And then at 10:15 pm, I heard from the physician with UCSF assuring me that I would be seen at my convenience. I am amazed at the care I have received and am deeply appreciative of the concern and responsiveness of my physicians.

This experience is very surreal for me; it is though I am accompanying someone else. I am hopeful and my spirits are generally very good. I am frequently tearful in the mornings and yet I continue to laugh and enjoy daily activities. I am staying with my son Michael and his family. The activities of family life bring great balance to the realities of being assessed as a cancer patient. How I like being the healthcare provider rather than patient.

At present there are many unknowns. I greatly appreciate the immense support, thoughts and prayers that I have receive from many of you already. I want to focus my energy on understand and accepting my condition allowing my healing process to take its own course. As such I will only be accepting my phone calls from my sons, my siblings and their families. Please remember me and my family in your prayers. For it is prayer that will keep me centered and God’s grace as I continue to walk this journey.
God bless and keep each of you.