The Odyssey

We were a very happy couple. Our daughter was four years old. We had just sold our condominium and were looking to move into a better school district in preparation for our daughters’ entry into academic life the following year.

It all started in Dec 2006. Lechi noticed a zit on her left scalp. She didn’t make much of it and tried applying tee-tree oil to get rid of it. A couple of weeks
later it had not abated and had grown into a sizable ball (of penny diameter).

I was driving back from San Francisco. It was January 2007. Lechi called me from the dermatologist’s office saying he was alarmed by the size and operated on it right away and had sent the tissue sample to the pathologist’s office. I drove straight to the dermatologist’s office and picked up Lechi that day.

A week or so later we got a preliminary pathology report with a diagnosis of peripheral nerve sheath tumor (PNST). However, they were not confident in this diagnosis and suspected it could be something worse. We started reading up on this and the consequences of PNST were not all that dire. In the meanwhile, the cavity left by the evacuation of the tumor had started to fill up and was growing very aggressively.

The dermatologists passed on Lechi’s case to another doctor at Good Samaritan Hospital who would perform a more extensive surgery. As luck would have it, he was preparing for a vacation and scheduled the surgery for later. But he was concerned with the agressive growth. He (and us) did not want to wait and recommended that we consult with the tumor board at Stanford Hospital.

By now, it was Feb/March 2007. Stanford was analyzing the slides. The diagnosis was proving difficult and they were giving us hints that it could be worse. They ordered more tests and tissue samples. Needless to say, Lechi was on pins and needles. In the middle of all this, we had just finished buying a condo in Palo Alto and I had accepted a job at Redback networks!!

The dreaded news came. Lechi called me as I was driving back from work saying that Stanford had come back with a diagnosis of cancer! This shattered our world. I was in tears and I called my new boss saying that I need lot of flexibility in my work schedule. He kindly agreed.

Stanford (Drs. Swetter and Reddy) informed us that the diagnosis had been very difficult as the presentation was very atypical. The tumor board majority consensus was melanoma and they were going to treat it as such moving forward. Dr.Fee was going to perform a wide excision of the scalp followed by a skin graft from the left thigh area. The surgery was scheduled for early May 2007.

Thus began the physical ordeal for Lechi overlaid on top of the already considerable mental ordeal she had been enduring these past few months. In preparation for the surgery there were numerous scans and tests.

The surgery went well. Lechi came back home with a big bandage around her head. She was in pain post-op. The pain was managed by medication. As Lechi would demonstrate till the very end, she bore all the suffering with great patience and dignity. Daily care involved changing the dressing (Xeroform) and bandage. The skin graft area was also covered with a special dressing. Lechi’s scalp had a shallow cavity about three inches in diameter.

During a follow-up visit, we learned that the skin graft had not “taken”. Dr.Johnson informed us that she needed a second skin graft. Dear Lechi was prone to vaso-vagal episodes (sudden drop in blood presure) on hearing distressing news. On this occassion she had one but recovered quickly with a drink of water. She was in tears. We also learned that between the time of the initial diagnosis and the time of the surgery, the tumor had grown inward and had reached the surface of the skull. The reports noted that the tumor was deep and possibly a stage III. Not at all good news!

The second skin graft was scheduled for May 29, 2007, our daughter’s fifth birthday!! This time it went well and the graft worked. Lechi now had two prominent scars from the graft on her left thigh. It turned out Dr.J had done a considerably better job of the graft in the thigh area than Dr.F.

After a few weeks of painful healing and recovery of the scalp wound, Drs.S and R wanted additional tests to eliminate lymph node involvement because of the depth of the tumor. The test itself involved injecting radioactive markers at the site of the tumor and then monitor where this site drains. Oh my god! this test was awful. The radioactive liquid had a nasty burning sensation at the time of injection and there was four or five such injections around the site!! Watching her go through this was gut-wrenching. She was in tears. I can only imagine her pain.

Mercifully, the lymph node involvement was negative! A huge relief for us at this point. But Dr.Kapp (radiation oncologist) had recommended radiation to the area around the site of the tumor. This therapy was highly sophisticated. It involved obtaining a 3D map of the area and then planning radiation doses that would be delivered by a array of lasers, each individually weak, but together they would converge on the site to deliver a sizable dose. This technique spared the healthy tissue around the site of the tumor.

Radiation therapy carried with it two great sources of consternation for Lechi. One was hair loss (possibly permanent) around the site of the tumor (about 6 inches in diameter). The other was that she had to wear a fairly tight fitting mask (custom fit during the planning phase) during the five week session. She absolutely hated it because it gave her a claustrophobic feeling.I had to have long discussions with Lechi about why it was necessary to go through this and how we could get through it. I am sure Lechini discussed this with her sisters too (BTW, they all contributed immensely in some shape or form towards Lechi’s well being and care. More on this later). With the help of Ativan and the therapists (they let me keep talking to her during the procedure through a microphone) she got through it. A very important lesson learned as a caregiver was not to be judgmental or impatient about her feelings but to fully participate and explore with her the options available to us.

After a period of convalescence, the wound had healed well and follow up tests/scans were proving negative and our lives returned to a semblance of normalcy for a few months. During this time, Lechi engaged herself socially (family, school, vacation trip, etc.,). She wore a bandana on these ocassions (looking pretty sophisticated and beautiful) to avoid any undue scrutiny of past events.

By now, it was November 2007. We were at Stanford for one of our regular follow ups. Dr.R examined her and did not particulary notice anything amiss. Dr. S was not so convinced. The left side of Lechi’s neck felt hard to her (behind the ear). she wanted a biopsy right away. Lechi underwent a fine needle biospy (another painful procedure) where they stick a needle into the skin and try to extract some tissue for analysis. The pathology report was not favorable. PET/CT scans showed tumor in the left neck area. The dreaded word in medical lingo – the cancer had metastasized.

Surgery was scheduled right away and Dr.J would perform the surgery. As I had done during the previous surgery, I kissed her forehead reassuringly before she was wheeled away by the anesthesiologist. I cannot capture for you the anguish I felt but more importantly she felt at these times. Each of these surgeries lasted several hours (including post op recovery). I spent these hours in the waiting area. Dr.J came out to meet me after the surgery. She informed me that there was a sizable tumor that had encroached several parts of the left neck and that she had to get rid of the parotid glands. Lechi also lost some range of motion of the left arm (could not raise it above the shoulder).

I have to mention here that in addition to the pain from the surgery, Lechi also had to battle nausea (side effects of the anasthesia). She endured a lot.

Pathology reports indicated that the margins on side of the surgical area was positive (means that the area was not completely tumor free). AArgh! Lechi needed to go back for a second surgery to make sure the margins were negative. Dear Lechi! she was such a sport.

Once the wound had healed, Lechi had to undergo radiation therapy in the neck area. After this therapy, Lechi was prone to dryness in the mouth as one of the salivary glands had been compromised and had been promised things would return to normal when the remaining gland compensated for the loss.

In the early part of 2008, the doctors had recommended adjuvant therapy (systemic) using Interferon because the location of the tumor had changed from the primary site on the scalp to the neck. For this, we went to Stanford every day (except weekends) for a month. Each visit lasted three hours. By the end of each week, the treatment would do a number of Lechi (fatigue, tiredness, nausea). But with her steel resolve and family support she got through it. Following this, she would go through another two months of daily subcutaneous injections at home. In all, Inteferon treatment lasted about three months.

Once again, our lives returned to a semblance of normalcy. Lechi and I took our daugther to Disneyland. We visited her sister in Carlsbad. There was also a trip to Strawberry Park for fun in the snow.

All this was short lived. In one of the follow up scans, in 2009, we learned (horror of horrors) that multiple areas were lighting up (right hilar mass- right lung, lower back- spine area). Lechi was devastated and so were we.

Dr.Kapp suggested he was willing to try and radiate the mass in the lung because it was small at this point. However, Dr. R suggested, given the progress of the disease and the fact that it was in more than one place, it may be best to try the next systemic treatment in the playbook – IL2. We also got a second opinion from doctors at Mayo Clinc about possible course of treatment given the state of affairs. They thought we were on the right path with the treatments so far (although they did not particularly think IL2 was warranted).

We decided to go the IL2 route. This is a fairly demanding therapy as it stresses the heart. Most people are able to tolerate only about 10 sessions. Lechi lasted 17 sessions (1 wk + 1wk break + 1wk)!! As one of her nurses would note later, she was an incredibly strong woman. Because the body retains fluids (leaks into skin) during the treatment Lechi gained about 20 lbs and lost all of it in just a couple of days post. Among the side effects of this treatment for Lechi, it induced restlessness, hallucinations and some disorientation. She would wake up at all times during the night wanting to walk, sleep in a different bed etc.,

Lechi (and we) had a lot of hope riding on the success of IL-2 treament. Alas! follow up scans six weeks later showed IL-2 had not helped stem the progress of the disease. The lung mass had grown and become sizable. There was also disease progression in the spine area. We received this news on our 10th marriage anniversary (Dec 15th). Lechi once again felt let down and was down in spirits. Science and medicine did not have satisfactory answers for her.

Now we are in 2010. With IL-2 we had exhausted all conventional therapies known to medical oncology. There was no time to lose. We started exploring clinical trial options. I contacted Dr.Rosenberg at NIH as he was pioneering some stem cell based approaches. Lechi did not qualify for it as she was missing some specific type of markers.

By this time, Lechi’s lower back had started to really bother her. She could only be up for a little while before she had to rest.Inspite of this, she had the mental resolve to participate in her sister’s seemandham. This was both heart warming and gut-wrenching at the same time. I also recall Lechi had a bout of vaso-vagal at home sometime. Luckily, I was right behind her and caught her in the nick of time. Jaggi helped me move her onto the bed. I was really worried about her back.

Finally, we decided to participate in a clinical trial at UCSF. It involved a combination of a chemo (Epirubicin) and a new drug (Panobinostat), lasting six weeks, followed by a scan six weeks later. At the end of it, Lechi was once again disappointed. It did not work! The disease was making progress aggressively. There was tumor along the spine and the chest mass continued to grow.

Dr.R encouraged us not to lose hope. We went back to UCSF to meet Dr.Adil Daud. He had a number of clinical trials open. While we were exploring this, Lechi needed to be rushed to the ER. One night as she got into the bed to lie down she felt a snap in her lower back and just fell face down on the bed absolutely unable to move because of the pain. They did not see anything amiss in the X-ray but had Lechi stay overnight in the observation unit.They suspected that it may have been an acute trauma to the back. She was sent home with a walker to help her with movement till her back recovered.

From this point on, lying down or sitting down in the car for hospital visits were excruciatingly painful to Lechi. Slightest movements or bumps were excruciatingly painful.Lying down in bed or getting up was an enormous ordeal. Lechi was in tears constantly from this. She also needed a wheelchair during hospital visits as walking was physically draining.Even with this, she made a couple of visits to UCSF for consults on clinical trials.

A scan revealed the lesion in the lower back had grown and was causing her the backpain on the right side. Dr.Hara recommended radiation therapy. Following this, she found relief from the backpain. However, she could only lie on her back or sleep on her right side.Lechi could still get up and lie down on her own (although it did involve a pre-planned set of movements to get in and out of bed). Within the home, she was still able to move around with the walker.

We had to wait a couple of weeks after radiation before we could start the next clinical trial (XL182) at UCSF. Only the first required a visit on-site (these visits were a significant ordeal for Lechi but she did it). Getting down the stairs from our home to the car required tremendous effort.

We were half way through the trial. One morning when Lechi woke up she heard a snap in the neck area. Initially we thought it was a sprain. But in a day it was very painful. We went to see Dr.R. Xray and scans revealed a fracture in the dens area. There were also lesions in the cervical part of the spine. Lechi had to have radiation to the neck area and a spinal fusion of C1 and C2 to fix the fracture. She had radiation in late April followed by surgery in early May. During radiation to the neck Lechi had to endure the nightmare of wearing a mask which she despised so much.(I have to mention here that Lechi needed a stabilizing collar post surgery but its use was precluded because there was a lesion recurrence in the neck area that was growing and wearing the surgical collar irritated it making it painful). She also had a second dose of radiation to the lower back during this period.
The whole care team moved really fast as the situation was life threatening because of the potential for squeezing of the spinal cord.
When Lechi came back home,lying on the bed in any position was proving very hard. She now required assistance to lie down as well as to sit up. To give her some indepedence and control over her movements, I purchased a fully motorized recliner/lift chair in which she could sleep or get up with the help of the walker. This worked fairly well and became her favorite chair till the very end. (There were occasions when she would have excruciating pain in her legs as she tried to get up and I had to hold her leg done physically with great force to provide relief)

I failed to mention earlier that Lechi was also experiencing chest pain in the right side during the second clinical trials and the time of spinal fusion surgery.

The neck surgery meant ending the clinical trial at UCSF. However, UCSF inidcated they would try to qualify us for a different trial. As Lechi was recovering from the surgery, she was starting to feel tired. Finally around mid-June she was feeling very tired, short of breath and could hardly take a step. This was serious and prompted a trip to the ER. Little did we expect what we learned during this visit.

She was admitted into the oncology ward as her lungs had filled up with fluid. Lechi had also lost almost all of her right lung to the disease. They agreed to drain the fluid from her lungs. Another excruciatingly painful incision on the side of her back was made to insert a tube to extract the fluid. The doctors informed us that the situation was dire. She had only hours to a few days left on this earth.The doctors told us we were at the end of the road medically and there was nothing more to be done. Her medical records would state “do not resuscitate”. These were extremely emotional moments as the verdict was being handed down. We are all in tears trying to grapple with the enormity of the situation. Difficult conversations were being had. Lechi was kept out of these conversations.

After the fluid was drained, Lechi was visibly better. She was breathing much more normally. Earlier, she was using all of her shoulder and chest muscles to get oxygen into her lungs. They were treating her with steroids and nebulizers round the clock.

Dr.Singh walked in one morning when Lechi and I were alone in the hospital room and just blurted out that it was the end of the road for Lechi. This was too emotional for me. I held her hand, hugged her and cried. I told her I was sorry. I had tried everything I could. I sat down and wept some more. She consoled me saying “It’s ok. Don’t cry”. This was the first time in all of this that I had revealed to her my true feelings and emotions. All this while I had had my game face on, trying to stay on top of things and deliver the best possible care for her.

(Lechi’s numerous visits to the hospital and countless tests/scans entailed either a blood draw, injection of radioactive tracers, or putting in an IV line. She had very small veins.There was tremendous variability (within and between hospitals) in the skill sets of the attending nurses and technicians in performing the needed activity. I cannot even begin to recount for you how many needle pokes Lechi endured, many times with great pain as the personnel involved would require three to four tries before they achieved their objective).

They decided to send her home in a few days. At this point, a miracle was our only hope. After this hospital visit, Lechi was pretty weak and demanded almost all of my time. She required assistance for everything from eating to daily ablutions. Progressively she had to have more and more pain medication to keep her comfortable. She was also wheelchair bound even within the house. As the days and weeks (she lasted approximately 45 days following discharge from the hospital) passed her condition was slowly deteriorating. Lack of movement meant swollen feet and bed sores. Home care nurses (who also had experience with hospice care) were helping with her care. In the last few days,the pain was not being managed well by oxycontin in high doses. We tried to supplement it with hot and cold presses almost round the clock (the whole family helped out). Lechi was put on a regimen of oral morphine. During this phase, she was mostly drowsy and could hardly keep her eyes open. But up until this time she had been watching her favorite TV shows (Sarah’s house) as well as other shows we all watched together. I must add here that she even tried to teach Math to Mahati inspite of her great physical discomfort just before she was shifted to morphine. In all the time that she was fighting this beast of a disease, only in the last few days did she utter the words “I am not able to do this anymore”.

The end came on the morning of Aug 2. My sister-in-law woke me up near 5.30AM saying that there was a crackling noise as Lechi was breathing. The hospice nurse had warned saying this was a sign that the end was very near. Lechi also had discharge of fluid through her mouth. She was also sweating. Pulse oximeter readings of oxygenation and pulse were erratic. I knew it was coming. By now, my mother-in-law was awake and she was in tears. She also knew something was very wrong. I called Patrice, the nurse and held the phone close to Lechi so that Patrice could hear her breathe. She did not like it either and said she would come home in an hour.

When Patrice came she asked me to bring Lechi’s pain medication. I did and when I came back, Patrice announced Lechi was going fast. We were all around her. Mathangi to Lechi’s right, Gayathri to her right, and I holding her feet. Lechi made a smirk with her lips, took a few more shallow breaths and then it was over. 9.50AM Aug 2, 2010. Lechi had just turned 39 two days prior.

The cutting edge in medicine could not save her. Her faith and spiritual beliefs which she did not abandon till the very end could not produce the miracle she was hoping for. Nevertheless, she fought this disease with every morsel of her being. Lechi’s passing is an unfathomable loss.

The visible signs of the ravages of the disease were confined only to the neck lesion and the fact that she had lost muscle mass in the legs and the upper torso. Lying in repose, she was beautiful, in a saree and bandana.

Lechi left us so young succumbing to this very cruel disease.Nature robbed Lechi of every ounce of joie de vivre (which she tried to hang on to tenaciously till the end) by subjecting her to unimaginable amounts of pain and suffering. Nature thus plundered our home. She left our material possessions intact but ruthlessly stole life’s priceless possessions, a friend, a companion, a partner, a wife, a mother, a daughter, a sister, a sister-in-law, and a daughter-in-law, all in one fell swoop.

Dearest Lechi, Makat and I will miss you! Always!