Flashback #5 - We meet oncologists galore...
I left off my last flashback post with Dr Schwartz releasing David to start treatment. He had an appointment already made to meet with the local neuro-oncologist at the Harry and Helen Gray Cancer Center at Hartford Hospital. We head there I believe the following day to keep our appointment with Dr Flowers to find out what treatment will be. Dr Schwartz had said many good things about her...apparently she is who he usually works with for this type of situation. It's a very nice building...about the size you would expect for a city the size of Hartford...not huge or flashy, but nice. We fill out all the paperwork...of course David passes everything over for me to handle, lol
We're in the room waiting...of course we're both super nervous. I mentioned previously that David already had some anxiety issues way prior to any of this...but it's much more evident nowadays! Actually a funny story...the day before when we were having our visit with Dr Schwartz, David starts getting anxious after all the information the doctor was giving us about his type of cancer, and Dr Schwartz could tell. He left the room, came back with a handful of M&Ms and tells David to eat them. So David, being the ridiculous germaphobe he was at this point is just sitting there holding the candy. Dr Schwartz said, no, eat them! So David eats them, inwardly freaking out at all the germs he just ingested...but he did start feeling better...haha!
Anyways, he was not a happy camper waiting to meet with the oncologist. When she comes in, she was nice of course, introducing herself...she had a bit of an accent, I think she was from Romania maybe, definitely Eastern Europe...and the personality to match it seemed. I had forgotten this part till I rewatched David's video, but she started out by asking all these personal questions...how many kids, ages, names, etc. Then she moved on to treatment options.
Basically, the standard treatment for Oligodendrogliomas is the same as that given to the more common (and worse) tumor...6 weeks of radiation and chemotherapy at the same time. Unfortunately for our nerves, she was much more blunt about the cancer, the effects, the outlook, etc than our surgeon had been. It was not a pleasant meeting at all! We felt much more depressed after our visit with her. Dr Schwartz had not sugarcoated it at all...but definitely had felt more positive to us. Dr Flowers was all business and blunt...I think our biggest reason for disliking her after the first visit was a case of shooting the messenger. It really wasn't her fault; she was just doing her job of giving us all the facts and information at her disposal. We just didn't like the information she had to give us! It was really, really not fun!
One good thing that came out of the first meeting was the fact that she was able to tell us what was going on with David's arm. Ever since surgery, his right arm had been slightly tingly and numb...but whenever he mentioned it to the nurses at the hospital, or the on call doctor, they basically said they didn't know what it was, but it had nothing to do with surgery...probably was just from the position of his arm during surgery. It was also the same arm that he had dislocated about 50 times playing football, had reconstructive surgery, then dislocated another 13 times...maybe it was just from that. He had also had some very vivid nightmares and had woken up and not been able to move his body for about a second or two. This had definitely been worrisome...was it a seizure? Those can be a side effect from brain surgery and tumors. Dr Flowers immediately knew what was going on. The tingling/numbness in the arm, odd tastes in the mouth, etc, was most likely caused by partial sensory seizures. She upped the dosage of the anti-seizure medication, Keppra, he had been placed on after surgery and that took care of that. The inability to move after waking from a terrifying dream she believed was sleep paralysis from waking up from an REM nightmare. According to Wikipedia, "Sleep paralysis is a phenomenon in which people, either when falling asleep or wakening, temporarily experience an inability to move. More formally, it is a transition state between wakefulness and rest characterized by complete muscle atonia (muscle weakness). It can occur at sleep onset or upon awakening, and it is often associated with terrifying visions (e.g. an intruder in the room), to which one is unable to react due to paralysis. It is believed a result of disrupted REM sleep" This is exactly what David experienced...he said it felt there there was an intruder and he couldn't move or wake up. She did also place him on an anti-anxiety medication that is also an anti-seizure medicine...kill two birds with one stone.
However, due to the fact that he was experiencing these extremely minor symptoms, she thought he should not drive...I don't even remember for how long. I can understand if he was having full, black out, stereotypical seizures that he shouldn't drive, but from some tingling in the the arm...we felt that was a bit much. Not to mention he'd no longer be able to work if he couldn't drive! Another thing to feel downcast about. Not surprisingly, we went home considerably deflated.
Meanwhile, after our appt with the oncologist, we were also told to make an appointment with a Neuro-Radiologist so we could get treatment started within the next week or two. We met with her a couple days later...and boy, was that a night and day visit. Dr Kim was the kindest, most compassionate doctor we had met to date. You could tell that she really cared about David, what he was going through, etc. We really liked her. She went over all the possible side effects of radiation, but really felt that the risks would be minimal for David. One concern was the proximity to the optic nerve...there was a very minute chance of blindness...but she told David it wouldn't happen. The bigger side effect that had about a 30% chance of occurring was short term memory loss about six months after radiation...and it might or might not be permanent. That was a bit scary. Also, of course, death. After talking about the risks, she hands David the form to sign that he knew the risks, and of course that's the first one listed under severe (but rare) side effects. Awesome! Radiation was starting to sound a bit hard core. The treatment course would be 6 weeks of radiation, 5 days in a row (the actual radiation only takes about 15 min, but with all the prep work and set up, it would wind up being about 40+ minutes a day) and the weekends off, while also taking an oral chemotherapy drug called Temodar for 6 weeks, but all 7 days a week.
We were still smarting a bit from our visit with Dr Flowers...we had already made an appointment with a doctor in the Neuro-Oncology department at Sloan for the next week. Dr Kim wanted David to come in to get all the stuff needed to begin radiation treatment, but we weren't sure at this point if we would be starting treatment yet. We wanted to meet with the NYC doctor to get our second opinion. However, David did go ahead and get his radiation mask made. This is the weirdest looking thing! It's basically white plastic mesh that is molded over the patient's face with the longest pointiest nose. They call it a witch's nose, lol...Anyways, David went in to meet with the tech to get it made...he said she heated up the plastic stuff, then just shoved it over his face and it stretched out around. It hurt though...think it scraped his face a bit. Bear in mind, this is the week after he just got his staples from surgery out...he was a bit miffed she was so rough about it! I mean, he's still not really even touching/washing it and she just shoved hot plastic netting around it. I know she had to make it, but could have been gentler. The point of the mask is that they mark points on it, basically so they know where to aim. They took a CT scan, marked the mask up, and he was done for that day. ( I have David's mask from when he did finally do radiation...I need to take a pic of it so y'all can see what I'm talking about...but not tonight ;)
About this time I finally convinced David to get a Facebook account...he set one up :) and of course, surpassed my friend count in no time, lol...the advantages of public school vs homeschooling...haha
Around this point in time, we got a call out of the blue from the priest at St Barts, one of the local churches. It wasn't actually the parish I attended at the time, so we were a bit surprised. He said that someone had called to let the church know what was going on and asked if there was anything he could do for us, whether meals, or whatnot. I know I mentioned before, but meals had been completely covered by my MOPS group. We received so much food, it was such a blessing! Anyway, we were really surprised and touched! My mom had actually mentioned anointing of the sick, and David had been interested. We were also at this point really starting to revive our church life a bit. We asked if he could anoint David...since David isn't Catholic, and I couldn't remember, we weren't positive if he would do it for him. Fr Stephen said no problem, when did we want to do it. He was going out of town the next week...we had appointments the next two days, so we said, is today ok? He told us to come right in. So off David and I, and the two little ones, went to receive a blessing. It was such a wonderful experience. Fr Stephen was so kind, prayed with us and anointed David with oil. We felt very moved by the whole thing and it really meant a lot that he would take the time to care for us on such short notice. Come to find out months later...I had no idea who had called the church office...I figured one of my friends from MOPS or something...but it was actually my mom!!! She couldn't remember which parish I went to, but she had called to let them know. haha, it was the wrong one, but Fr Stephen couldn't have cared less. He did call St James (where I went at the time) to let them know our situation and one of the priest from there also called and stopped by with lots of candy for the kids (it was getting close to Halloween by then) and a gift card to the grocery store. So many people were so kind to us. The guys at David's work took up a collection for him...they called it the hundred club...a bunch of them all donated a 100.00 each for him since he was off work for about 6 weeks. His job kept him on the payroll for a while also...since David is union, typically, if you're not working, you're not getting paid. The benefits are wonderful, but it can be a bit feast or famine at times. If he's working, it's good...if there's no work, or you're on vacation, out sick, etc...no pay. Friends of my parents sent gift cards...some of David's old high school friend...just a lot of wonderful, thoughtful people trying to help us out. It was really heartwarming!
Anyways, we had our second meeting with the local oncologist the day before we headed to Sloan for our second opinion. This appointment went so much better! I mentioned previously that while the initial pathology report had come back with the diagnosis, we were still waiting on the results from the complete report. If this tumor was missing certain chromosomes, it would indicate that it was more sensitive to chemotherapy.
The next day we made our first trip (of many) to NYC for his appointment with an oligodendroglioma specialist at Sloan. One of the other things that made us really want to check them out was the fact that Sloan is a place where they perform trials and treatments that may not be available elsewhere. We wanted to get any advantage we could! Previously that week we had gotten all the reports, MRI scans, CT scans, surgery notes, even a sample from the tissue sent to Sloan so they could run their own pathology reports on it.
We came home to the best surprise!
One good thing that came out of the first meeting was the fact that she was able to tell us what was going on with David's arm. Ever since surgery, his right arm had been slightly tingly and numb...but whenever he mentioned it to the nurses at the hospital, or the on call doctor, they basically said they didn't know what it was, but it had nothing to do with surgery...probably was just from the position of his arm during surgery. It was also the same arm that he had dislocated about 50 times playing football, had reconstructive surgery, then dislocated another 13 times...maybe it was just from that. He had also had some very vivid nightmares and had woken up and not been able to move his body for about a second or two. This had definitely been worrisome...was it a seizure? Those can be a side effect from brain surgery and tumors. Dr Flowers immediately knew what was going on. The tingling/numbness in the arm, odd tastes in the mouth, etc, was most likely caused by partial sensory seizures. She upped the dosage of the anti-seizure medication, Keppra, he had been placed on after surgery and that took care of that. The inability to move after waking from a terrifying dream she believed was sleep paralysis from waking up from an REM nightmare. According to Wikipedia, "Sleep paralysis is a phenomenon in which people, either when falling asleep or wakening, temporarily experience an inability to move. More formally, it is a transition state between wakefulness and rest characterized by complete muscle atonia (muscle weakness). It can occur at sleep onset or upon awakening, and it is often associated with terrifying visions (e.g. an intruder in the room), to which one is unable to react due to paralysis. It is believed a result of disrupted REM sleep" This is exactly what David experienced...he said it felt there there was an intruder and he couldn't move or wake up. She did also place him on an anti-anxiety medication that is also an anti-seizure medicine...kill two birds with one stone.
However, due to the fact that he was experiencing these extremely minor symptoms, she thought he should not drive...I don't even remember for how long. I can understand if he was having full, black out, stereotypical seizures that he shouldn't drive, but from some tingling in the the arm...we felt that was a bit much. Not to mention he'd no longer be able to work if he couldn't drive! Another thing to feel downcast about. Not surprisingly, we went home considerably deflated.
I honestly believe that the Lord allowed this appointment to go so poorly so we would be motivated to look into finding a second opinion. We really didn't know what we were doing at this point. Having a bad experience was one of the things that made us want to "shop around." Also, one of David's friends is an orthopedic surgeon, but he had done a month's residence at Sloan-Kettering in NYC. He strongly suggested that David go there...he told David that if it was his family, he would either go to MD Anderson in Houston, or Sloan-Kettering in NYC. Luckily, Sloan is only a few hours from us. He sent David a name and a number and we started to look into it.
Meanwhile, after our appt with the oncologist, we were also told to make an appointment with a Neuro-Radiologist so we could get treatment started within the next week or two. We met with her a couple days later...and boy, was that a night and day visit. Dr Kim was the kindest, most compassionate doctor we had met to date. You could tell that she really cared about David, what he was going through, etc. We really liked her. She went over all the possible side effects of radiation, but really felt that the risks would be minimal for David. One concern was the proximity to the optic nerve...there was a very minute chance of blindness...but she told David it wouldn't happen. The bigger side effect that had about a 30% chance of occurring was short term memory loss about six months after radiation...and it might or might not be permanent. That was a bit scary. Also, of course, death. After talking about the risks, she hands David the form to sign that he knew the risks, and of course that's the first one listed under severe (but rare) side effects. Awesome! Radiation was starting to sound a bit hard core. The treatment course would be 6 weeks of radiation, 5 days in a row (the actual radiation only takes about 15 min, but with all the prep work and set up, it would wind up being about 40+ minutes a day) and the weekends off, while also taking an oral chemotherapy drug called Temodar for 6 weeks, but all 7 days a week.
We were still smarting a bit from our visit with Dr Flowers...we had already made an appointment with a doctor in the Neuro-Oncology department at Sloan for the next week. Dr Kim wanted David to come in to get all the stuff needed to begin radiation treatment, but we weren't sure at this point if we would be starting treatment yet. We wanted to meet with the NYC doctor to get our second opinion. However, David did go ahead and get his radiation mask made. This is the weirdest looking thing! It's basically white plastic mesh that is molded over the patient's face with the longest pointiest nose. They call it a witch's nose, lol...Anyways, David went in to meet with the tech to get it made...he said she heated up the plastic stuff, then just shoved it over his face and it stretched out around. It hurt though...think it scraped his face a bit. Bear in mind, this is the week after he just got his staples from surgery out...he was a bit miffed she was so rough about it! I mean, he's still not really even touching/washing it and she just shoved hot plastic netting around it. I know she had to make it, but could have been gentler. The point of the mask is that they mark points on it, basically so they know where to aim. They took a CT scan, marked the mask up, and he was done for that day. ( I have David's mask from when he did finally do radiation...I need to take a pic of it so y'all can see what I'm talking about...but not tonight ;)
About this time I finally convinced David to get a Facebook account...he set one up :) and of course, surpassed my friend count in no time, lol...the advantages of public school vs homeschooling...haha
Mary Catherine Woolley became friends with David Woolley.
Around this point in time, we got a call out of the blue from the priest at St Barts, one of the local churches. It wasn't actually the parish I attended at the time, so we were a bit surprised. He said that someone had called to let the church know what was going on and asked if there was anything he could do for us, whether meals, or whatnot. I know I mentioned before, but meals had been completely covered by my MOPS group. We received so much food, it was such a blessing! Anyway, we were really surprised and touched! My mom had actually mentioned anointing of the sick, and David had been interested. We were also at this point really starting to revive our church life a bit. We asked if he could anoint David...since David isn't Catholic, and I couldn't remember, we weren't positive if he would do it for him. Fr Stephen said no problem, when did we want to do it. He was going out of town the next week...we had appointments the next two days, so we said, is today ok? He told us to come right in. So off David and I, and the two little ones, went to receive a blessing. It was such a wonderful experience. Fr Stephen was so kind, prayed with us and anointed David with oil. We felt very moved by the whole thing and it really meant a lot that he would take the time to care for us on such short notice. Come to find out months later...I had no idea who had called the church office...I figured one of my friends from MOPS or something...but it was actually my mom!!! She couldn't remember which parish I went to, but she had called to let them know. haha, it was the wrong one, but Fr Stephen couldn't have cared less. He did call St James (where I went at the time) to let them know our situation and one of the priest from there also called and stopped by with lots of candy for the kids (it was getting close to Halloween by then) and a gift card to the grocery store. So many people were so kind to us. The guys at David's work took up a collection for him...they called it the hundred club...a bunch of them all donated a 100.00 each for him since he was off work for about 6 weeks. His job kept him on the payroll for a while also...since David is union, typically, if you're not working, you're not getting paid. The benefits are wonderful, but it can be a bit feast or famine at times. If he's working, it's good...if there's no work, or you're on vacation, out sick, etc...no pay. Friends of my parents sent gift cards...some of David's old high school friend...just a lot of wonderful, thoughtful people trying to help us out. It was really heartwarming!
Anyways, we had our second meeting with the local oncologist the day before we headed to Sloan for our second opinion. This appointment went so much better! I mentioned previously that while the initial pathology report had come back with the diagnosis, we were still waiting on the results from the complete report. If this tumor was missing certain chromosomes, it would indicate that it was more sensitive to chemotherapy.
The pathology report was finally complete. She told us that David's tumor did indeed have the 1p/19q co-deletion. Again, according to Wikipedia, "1p/19q co-deletion has been correlated with both chemosensitivity and improved prognosis in oligodendrogliomas." As you might imagine, this doctor visit went much more smoothly for us. She was also very supportive of our going to Sloan for a second opinion. We felt much more uplifted after this appointment. I really appreciated her support in this!
The next day we made our first trip (of many) to NYC for his appointment with an oligodendroglioma specialist at Sloan. One of the other things that made us really want to check them out was the fact that Sloan is a place where they perform trials and treatments that may not be available elsewhere. We wanted to get any advantage we could! Previously that week we had gotten all the reports, MRI scans, CT scans, surgery notes, even a sample from the tissue sent to Sloan so they could run their own pathology reports on it.
Before meeting with the doctor, they did lots of paperwork (I filled it out), bloodwork...then we got called back to the examination room and talked with a younger doctor who was in fellowship with Dr Lassman...she did all the neurological tests (hold the pizza, walk in a line, strength tests, etc) as well as reviewing all the information before we actually met the main doctor. Finally we saw Dr Lassman who was a specialist in Oligodendrogliomas and we hoped would be able to give us some more specific treatment options. He told us that the treatment plan proposed by Dr Flowers was perfectly good...and that probably 60% of oncologists would have gone with the same idea. He, however, belonged to the 40% who felt that chemotherapy alone was just as effective for this particular type of cancer. He also told us about an ongoing trial that he felt might benefit David. This was why we had come! We were really hoping to be able to get into a trial. We left feeling hopeful about treatment...we would be returning the next week after their pathology department had a chance to run results on their sample and to discuss in more detail the trial and general treatment plans.
We came home to the best surprise!
- My friends had gotten mums, squash, corn stalks and transformed my porch to the most beautiful fall stage ever! They had even personalized some of the squash with the kids names...it was magical. I might have even cried a little :)
You can't see all the flowers, but my hanging baskets and my big pots in front were all filled! it was so lovely!
Trunk or Treating at Trinity Covenant Church (where my MOPS group meets)
Daddy took the girls trick or treating! Red One was a pirate that year, Red Two was a ninja, and Red Three was a butterfly fairy...Buddy was a dragon :) They had fun! David got tired...lolOh, I almost forgot...here's another vid by David about this time period.
Well, that's enough for tonight...I'll pick up with our second trip to MSKCC (Memorial Sloan Kettering Cancer Center) in NYC next Flashback Post.
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