Tuesday, November 18, 2008

TIMELINE OF OUR TUMOR



At least 5 or 6 years ago – It began to grow… unnoticed.

Fall 2007 – Hassan started having simple partial seizures in his right arm. Perhaps 1 to 2 times a week. His would hold his forearm to his body and his hand would show a very slight tremor.

Spring 2008 – Seizure activity seemed to disappear.

Summer 2008 – When we were in the US for the summer, the seizures returned, with much more frequency, this time as interesting little laughing fits. Perhaps 1 to 3 times a day.

Saturday, 6 September 2008 – Visited neurologist #1 in Casablanca. She did an EEG, diagnosed probable slight epilepsy, prescribed an anti-seizure med (Depakene), and scheduled us to come back in a month. She told us to get an MRI done before we returned to rule out other causes of the seizures.

Monday, 15 September 2008 – Phoned the neuro to ask if it was OK to stay at 500mg a day of the drug (he was supposed to take 250mg for three days, then 500mg for 4 days, 750mg for 6 days, then go up to the prescribed dose of 1,000mg per day. However, when he hit 750mg per day, it made him feel terrible. He woke up in the middle of the night to vomit. He felt dizzy most of the day.). The doctor said yes, that was OK for now, and we would see about it further when we came to see her.

Saturday, 11 October 2008 – Got the MRI done (Because of the holiday that falls at the end of Ramadan, we got busy. He went to visit his family, and we had delayed the MRI and return to neurologist #1 by one week.).

Monday, 13 October 2008 – We picked up the MRI films from the radiologist’s office and took them directly over to the office of neurologist #1. She took a look at them and immediately informed us that there was a mass in the left side of his brain. She says that she will keep the films and go over them personally with the radiologist. She tells us that he MUST ramp up to 1,000mg per day of the drug. When we felt scolded about that, we reminded her that he called to check her OK. She explained that she didn’t have his file in front of her when she agreed. She says to come back to see her in a month and plan a follow-up MRI for 6 weeks. She says that if it is a tumor and we are talking surgery, that we will need to move very quickly at that point.

Tuesday, 14 October 2008 – I receive information that a co-worker, Ali, has a cousin who is a neurologist here. I talk to him and, no, the cousin is a dermatologist. However, she works in a clinic with a neurologist who she would recommend. We make the appointment to consult neurologist #2.

Thursday, 16 October 2008 – When Hassan runs in to pick up the MRI films from neurologist #1, she says that she has studied them with the radiologist and there is most certainly a tumor. She says we need to talk surgery. She says that the surgery would be approximately 50,000 Moroccan Dirhams (MAD) (approximately equal to US$5,882) and that she will show him the clinic and operating room where she works with the most state-of-the-art equipment from the US. Appointment with neurologist #2 at noon goes well. He takes much more time to study the images and explain what he sees. He speaks better English, so I immediately feel more comfortable discussing the situation with him. He says we could drill a small hole and take a small sample of tissue for a biopsy. Tumors are graded on a scale of 1 to 4. The bigger the number, the faster growing and more dangerous. 1 and 2 are benign, 3 and 4 are malignant. Even if we were to discover that the tumor is benign (which neurologist #2 estimates that it is… he expects it to be grade 1), we still have a tumor pressing on the brain and causing seizure activity. He recommends surgery. He says we could do surgery next week. We can expect Hassan to be in ICU for a day and then moved to a regular room for a 4 or 5 day stay. When I ask my husband if he feels any more comfortable with this doctor, he looks at me blankly and shrugs.

Friday, 17 October 2008 – We phone to schedule surgery with neurologist #2. I feel comfortable that surgery is the right choice, however much less certainty about who I should trust with my loved one’s head. When Ali phones his cousin to set things up, he tells me the surgery is set for 20 October. Whoa! Too fast! I have many questions about the where and how of the surgery, so the schedule is set to visit the surgeon again on 23 October and have surgery scheduled for 27 October. I am urged by a few friends (one also being my boss) to write an email to the school community to let everyone know what is going on. The news will leak, right? Might as well be the correct news, and from me. Before I write that email, I pull aside a few friends here who I have not yet had the chance to tell in person. When I tell Lizzy, she offers to contact a few doctors from her way-back files in Boston if it might help us to get more information and make the best decisions.

Saturday, 18 October 2008 – Though Hassan did not really want to tell his mother and worry her about all of this, I insisted. He called last night to discuss with her that he wanted her to come for a visit. We had agreed that he should wait and disclose the full truth when she’s already here. She and his sister, Keltoum, got on a bus tonight to arrive early the next morning.

Sunday, 19 October 2008 – Lizzy emailed the two doctors she knew in Boston (Drs. Daffner and Budson). Both of those doctors wrote back quickly and agreed on two names to refer us to (Drs. Wen and Black, both also in Boston). She emailed both of these new names, and briefly explained the situation. By the middle of this night, both Drs. Wen and Black had responded, agreed to look at any images we could send, and as well… something interesting. Dr. Black gave the name of Dr. Mustapha El Azouzi in Rabat, Morocco. Dr. Black says he is a particularly good surgeon if we wish to consult him.

Monday, 20 October 2008 – Ali has spoken with neurologist #2 (via his cousin) about the estimate on cost for this surgery. He tells me that normally the surgery would be about 70,000 MAD (US$8,235), but that with the family connection the surgeon could probably do it for about 35,000-40,000 MAD (US$4,117 – 4,705). These estimates are, I believe, for surgery only… not clinic fees, anesthesiologist, etc…. but I already can’t believe the difference in the cost of medical care here vs. the states. ALSO, I asked one of my good friends Barbara to help me out by trying to contact Dr. El Azouzi in Rabat. As we search for contact information online, we discover more and more about his ties with Dr. Black… and we discover Dr. Black is a pretty big deal. He’s a neurosurgery professor at Harvard, among many other things. Anyone he recommends is worth checking out, right? Barbara’s husband, Mohamed, knows many people in Rabat, and he sets to work trying to contact Dr. El Azouzi. But not before telling us, “Oh, I know him. He’s the doctor that cared for my father when he had a stroke.” Yet again, it proves to be a small, small world. Hassan’s sister, Keltoum, had to return home on the 8 hour bus trip today in order to be at work for the week.

Tuesday, 21 October 2008 – Mohamed continues trying to contact Dr. El Azouzi, to no avail. We decide to track him down the old fashioned way. On foot. We plan to go to Rabat on Wednesday, and Momamed works a few angles. He gives us a couple of different contact names who can help us find this elusive doctor. Barbara even pulls in a favor for us… a friend of hers, Peter, will pick us up at the train station tomorrow morning and take us to the hospital.

Wednesday, 22 October 2008 – We arrive in Rabat at 9am. It’s pouring cats and dogs. Peter picks us up and drives us out toward the hospital, however we can’t find the clinic we think we’re supposed to be headed for. Peter calls his sister in law, Wafaa, a dermatologist, and we go to pick her up so she can show us where to go. When we arrive at her office, she’s on the phone with Dr. El Azouzi’s office making an appointment for us to see him. At first his office suggests an appointment date a month away (That’s normal for the states, but quite abnormal here. This guy must be busy!). Wafaa begs. They agree. At about 10:45am, we have an appointment for noon. Peter and Wafaa take us (me, Hassan, his mother) out to lunch and then help us find the Dr’s office. They leave us to it. We were told the Dr. was in surgery and running late. He arrives in the office at approximately 2:30, and we’re across the desk from him by about 2:45. Let me stop here to say that I was really hoping that I could make it make sense to have surgery in Casablanca. It’s close to home, we have the “family” connection, etc. What I’m really hoping will happen here is that I say to Dr. El Azouzi, “Are you familiar with neurologist #2?” And he will reply, “Oh, my, yes. He is an excellent doctor. You are in fine hands.” Then my butterflies will die and we can feel calm and secure. I’ll save the suspense… things do not happen as I had wished. They’re better. Dr. El Azouzi, neurologist #3, examines Hassan, looks at the MRI films, and talks to us frankly about what he sees. He explains a lot, and has a very soothing manner. He thinks the tumor is a Grade II just by looking at the films. When he asks me if I speak English, I tell him how we got his name from Dr. Black in Boston. This thrills him, and there happens to be a photo behind my head of him with Dr. Black, Mrs. Black, and the previous king of Morocco. Wow. He gushes about what a great man Dr. Black is, and how good. He tells us that his consultation will be free of charge. We discuss how difficult it is to make the choices of where and who for the surgery. He has to turn to answer his office phone briefly, and I use that pause to ask Hassan if he can think of any other questions we need to ask right now. He says, “I feel like if I am with this doctor, I am okay.” Finally! Now he gets that “comfort level” I kept asking him about. When I ask Dr. El Azouzi one last question before leaving, it is one of those uncomfortable ones about money. I asked what ballpark we could expect. We do have insurance here, but you’ve gotta pay up front and then get the reimbursement months later. He said, as far as the surgery itself was concerned, he could do it almost for free. That left clinic fees and anesthesiologist fees totaling approximately
30,000 MAD (US$3,529). He could do the surgery on Friday. He expects Hassan not to need ICU care at all, and only a 2 day-ish clinic stay. I explain that I would like to wait a few days in order for my mother to arrive and be with us. We take our leave to consider all things.

Thursday, 23 October 2008 – As Hassan and I discuss things, we’re still reeling over how much we love Dr. El Azouzi. As it turns out, the Dr. is traveling to France for a meeting in about a week. If we don’t schedule surgery for tomorrow, we would need to wait until he returns from Paris. Not good to operate and run, right? Hassan feels good about the decision now, and he doesn’t really want to anticipate surgery for two weeks. So, we phone to schedule surgery for tomorrow morning. Hassan goes to get the steroid shot he needs to get a day before surgery in order to “soften” his brain. We phone another of his sisters, Yemina, to travel up by bus and meet us in Rabat tomorrow morning (His mother does not speak Arabic, only their dialect of Berber, so she’s a bit more of a stranger in a strange land here than me). I decide we need to go get a hotel tonight where his mother and sister can stay through his hospital stay. If everything is under control, I’m hoping he can go into surgery with no worries about all of us. One of the school drivers, Abderrahman, agrees to take us in the school van. My friends Barbara and Jodi are going along. It’s like a road trip. We stop for snacks and everything. Jodi keeps saying, “I can’t believe we’re taking him to have brain surgery!” When we arrive in Rabat, it’s raining yet again. We drive around for hours trying to find a reasonably priced hotel, not a total dump. Difficult, apparently due to a conference or two in town for the weekend. Finally, at around 10pm, we luck out, and get settled for the night. As we’re driving around, one of the teachers is online at the school helping to make plane reservations for my mom for the next day.

Friday, 24 October 2008 – Surgery day! His sister arrives at the hotel just in time to leave for the clinic. Finally we’re all taken care of. We arrive at the clinic at around 9am. By 9:30ish they’re taking him into prep. Perhaps 9:45ish, they wheel him away. I thought he was going to have a blood workup with the anesthesiologist. At 10ish, Dr. El Azouzi comes by the waiting area to tell us not to worry, everything will go just fine. I spoke to friends at the school at approximately 11am and reported that he was in prep. I told them I would phone when he was off to surgery. At 11:30ish, I began to get a little suspicious that I had misunderstood what was happening. The Dr. reported back at about 12:00 that the surgery had gone very well!! I didn’t even know he was in surgery! By 1:00pm or so we are in a private room and he is drifting in and out of the anesthesia. By that evening, he’s fully coherent and we’re amazed. The urinary catheter is causing him much more discomfort than his head. His sister Yemina and I go to the pharmacy to pick up meds he needs (things are done very differently here), and we also take samples of the tumor tissue to a pathology lab across town. They said the results would be ready on Wednesday. I got to stay in the clinic with Hassan, and his mother and sister retired to the nearby hotel.

Saturday, 25 October 2008 – My mother arrived in Casablanca this morning, and friends from the school picked her up. Hassan was still napping quite a bit, but doing amazingly well. Dr. El Azouzi stopped in and said he anticipated releasing us to go home tomorrow. Friends from the school visited and brought my Mom as well. Everyone was amazed that Hassan had just had brain surgery. Doesn’t seem real. He got up and walked a bit today.

Sunday, 26 October 2008 – Released from the clinic. Went home, got him cozy on the couch. The trip tired him out, but otherwise, he’s doing great. His mom and sister are keeping him more than well fed.

Monday, 27 October 2008 – Hassan’s sister Yemina heads home. I go back to work. This is when it comes in spectacularly handy to live in an apartment above the school offices.

Wednesday, 29 October 2008 – Today Hassan felt GREAT. He was talkative, laughing, and joking. Punchy, I called it. He had several visitors, and things were looking peachy. We tried to phone for the results of the pathology report. The lab says they sent it, but will release nothing via telephone. The doctor’s office claims not to have received it yet.

Thursday, 30 October 2008 – In the wee hours of the morning, Hassan woke up and got out of bed. I figured he was going to the bathroom, and I asked if he was OK. He said yes, but a few minutes later, my mom ran into our bedroom and said, “I think Hassan is having a seizure.” Sure enough, grand mal. He had walked into the living room where his mom was sleeping on the couch. He sat down and started stretching his neck and arms. Then, whammo. We could not get in contact with Dr. El Azouzi, so we took him to a 24-hr clinic here in Casablanca. Two teachers, Lori and Barbara drove us around looking for a clinic. I seriously kicked myself for not having a back-up plan here. We finally find a clinic and they admit him to ICU. There’s nowhere for me to wait. They say a dr. will be there in the morning and they’ll do a CT scan at 9am. On the way back to that clinic for the CT scan, I finally hear back from Dr. El Azouzi. He says a seizure is a normal possibility after his surgery. He says no need for the CT scan. As long as he’s “OK” we are directed to take him home. He tells me that we should up Hassan’s dose of Depakene from 1,000mg to 1,500mg per day, as well as add Urbanyl 15mg per day to avoid further seizures. We have to fight the doctors at the Casablanca clinic to discharge Hassan against their medical orders. Finally we get home. I nap at his feet on the couch and at about 2pm I awake to seizure #2. Call the doctor again, and he still says normal. Asks if Hassan is running a fever or vomiting? No. Don’t worry until he has 5 or 6 seizures in a day (not easy. I’m having to work hard to keepittogether through the seizures). Hassan begins to vomit. We attempt to get the new med from the pharmacy when it opens after the lunch break at 3:30. No go without a prescription, so I call the doctor yet again. Can he fax the prescription? Do I need to bring him in now that he’s vomiting? Before I can get my questions answered he breaks the news that the pathology report came in. It’s grade III. Anaplastic Oligodendroglioma. Now we have to plan radiation and chemotherapy. Barbara took the phone away (you think I was barely keepingittogether before that news???), and the next thing I know we are planning to take Hassan back to Rabat to the clinic tonight. While we were making the plan, at about 4:30pm, Hassan had seizure #3. This trip to Rabat was much less fun than the previous road trip to the hospital! Hassan’s mom had been slightly nervous at the thought of brain surgery, but I can’t fully explain how seriously FREAKED OUT she was by the seizures. You can take an old lady out of the Berber mountain village… Anyway, she called his sister Yemina to come back up for support. That will be good. Hassan was admitted to the ICU for the night. My initial plan was to camp out in the waiting area (which is a glorified hallway). When Dr. El Azouzi got there to check on us, he noted some swelling of the brain and said Hassan was dehydrated. The plan is to keep him as long as it takes to get him stabilized. Just take it one day at a time. I feel it speaks a great deal about this doctor that he took me aside, explained that I needed to take care of myself also, and (perhaps most importantly) I absolutely melted into his suggestion. Notable that he also offered to personally cover all of the clinic costs for this stay. I went home and slept soundly.

Friday, 31 October 2008 – I took Hassan’s mother and sister to visit him, and I went planning to spend the night. We got there in the mid-afternoon. He had been moved to a room, and we found him asleep. Much to our surprise, he woke up and had us all laughing in no time. He was feeling 110% better. After everyone else left, I broke the news to Hassan about the pathology report. He had been in no shape for this conversation during the 24 hours since I found out.

Saturday, 1 November 2008 – Dr. El Azouzi is scheduled to leave the country this afternoon, but he agreed to see me this morning. Before I even got dressed to make the trip over to his office, he popped into Hassan’s room at the clinic. He was pleased with Hassan’s condition and discharged us to go home. He gave us the name and number of a doctor in Casa in case we needed anyone in an emergency. He discussed the pathology report with Hassan. He summed it up by saying that he wished he could say “benign”… so, it’s not the best news, but it’s certainly not the worst news, either. He gave orders to rest, eat well, and see him in 2 weeks to discuss the plan for treatment. We took the train home and he got cozy on the couch again. He’s slowly processing the “cancer” thing.

Thursday, 13 November 2008 – Hassan has been getting stronger, venturing out, generally feeling much more like himself. No notable deficits. Perhaps a little irritability… who knows if that’s the surgery, the meds, the fatigue? Today we went to Dr. El Azouzi. He’s still very happy about Hassan’s progress and prognosis. He gave us the name of an oncology clinic in Casablanca. Once Hassan gets some necessary dental work out of the way, we’re on to the next phase of the journey.

This isn’t exactly what I had in mind for year two of our marriage. I’m sure it’s not Hassan’s ideal 26th birthday present… but there are so many good things about our situation. He had warning signs but not painful ones. We got a quick diagnosis and found a superb doctor. He’s got no deficits from his surgery… got right back to being himself. And I can't possibly say enough about the support that we've gotten from everyone around us. "Thank you" doesn't seem like nearly enough. I know the future might not be as smooth, but I am hopeful.

Here’s hoping future updates are happy ones!

6 comments:

frances said...

thank you for the detailed update! i'm so sorry you guys are going through this, but i'm really glad he seems to be healing well. you two are very lucky to have one another. love you!

Scarlett said...

Thank you so much for the full report. The catharsis of writing about it might be helpful as you trudge through this journey.

We're all grateful for the "so far, so good" status. And we're extremely gratified by the wonderful friends surrounding you and Hassan.

love and prayers,
Auntie D

Anonymous said...

hi guys iam very soory about all the unexpected things. glad to read that things are getting better with you ,I wish i was there to give you more sepport ,but all my prayers with you gays
God bless you
love you


Lahcen

savejina said...

...yes, thank you for the detailed update. i feel like i have a somewhat better idea of the emotional and physical rollcoaster you have been experiencing. Travelling, calling, searching, researching, waiting... I am so sorry that it is such a tough time. I am praying for you guys and I am sending you a virtual hug. Please let me know if there's anything I can do for you. I surely do miss you an awful lot.
loveya,

yt said...

Shannon, it's been so long... So sorry to hear about this. You guys are being super brave and you also seem to have an incredible support system and friends who love and care about you. Please know my thoughts are with both of you. Hugs, yu-tzu

tarifbulabla said...

very good thanks