I drove my daughter up to Newark airport this morning, so the house will be a little bit emptier. It was really good that she was here.
Pete has an appointment with the radiology oncologist on Monday, Jan 4. We will probably get the results of the pathology report then, but the fact that he has the appointment pretty much confirms that the tumor was not benign.
He spoke with the hematology oncologists this morning and they told him they'll be in contact with the radiology oncologists (offices are in the same hospital as his brain surgery, but on 1st floor) because the chemo will have to wait until he heals up a bit from the surgery but the radiation will probably start sooner.
That's about all we know at this point in time. Monday's appointment should yield more information about the plans for treatments.
To everyone who reads this, my wish is that you enjoy a safe and wonderful New Year celebration, and that 2010 brings health, peace and renewed hope to all.
Wednesday, December 30, 2009
Saturday, December 26, 2009
Biopsy Results Monday? - December 26, 2009
Pete was released from the hospital Friday afternoon. We had a nice dinner and my sister came over just as we were finishing up. She and Gina made all of us laugh as they hula'd and boxed and flapped on the Wii Fit Plus I got for Christmas. Laughing felt good.
Pete's headache is slowly resolving itself. It's a good thing he's a pharmacy tech because he's able to keep all his prescriptions in order, and believe me, there are enough of them to open our own pharmacy!
The doctors all felt that the pathology report should be ready Monday. Until that's in we really don't know the actual plan for treatment, because the results from the biopsy will determine the course of radiation and chemo.
I'm just happy to have him home and he's happy to be here as well.
Pete's headache is slowly resolving itself. It's a good thing he's a pharmacy tech because he's able to keep all his prescriptions in order, and believe me, there are enough of them to open our own pharmacy!
The doctors all felt that the pathology report should be ready Monday. Until that's in we really don't know the actual plan for treatment, because the results from the biopsy will determine the course of radiation and chemo.
I'm just happy to have him home and he's happy to be here as well.
Friday, December 25, 2009
Best Christmas Present - December 25, 2009
Yippee! Got a text from Pete a short time ago. One doctor was in to see him already this morning and told him that he'll be discharged today! No word on when, but I told him I'll be in the car heading up to the hospital as soon as he lets me know.
Just now he texted me that another doctor will be in to see him between 11 and noon. It's 10:15 right now.
Thank you to everyone who has offered prayers, good wishes and encouragement during this very difficult time. May you all find peace during this holiday season that continues through the New Year and beyond.
Just now he texted me that another doctor will be in to see him between 11 and noon. It's 10:15 right now.
Thank you to everyone who has offered prayers, good wishes and encouragement during this very difficult time. May you all find peace during this holiday season that continues through the New Year and beyond.
Thursday, December 24, 2009
Day 1 - Post Surgery - December 24, 2009
Today the roller coaster was on its way up, thanks to Dr. LaN, the oncologist who sent Pete for the MRI last week.
This morning we went to the ICU waiting room and met one of Pete's long-time buddies sitting there. He had just been visiting with Pete a few minutes when he was asked to wait in there because they were taking Pete for his post-op MRI. I know MRIs take some time, so we sat and chatted for a while and then I got up and took the gift
tray of cookies (Bruce had picked up a couple of them for me to give to the nurses) and went in to check whether Pete had returned.
As luck would have it, he had just been in the room a few minutes when one Dr. LaN came in to talk with him. She was the one we had seen on Friday and had ordered the immediate MRI. She was a bit perturbed because, just as a "wet" sonogram had been ordered, she had ordered a "wet" MRI (see 12/19/2009), but the doctor who did the MRI did not report the findings immediately. They were not called in to the oncologists until Saturday morning, which precipitated their immediate call to Pete alerting him to irregularities in his brain.
She talked to us at length, answering our questions with clear and detailed explanations. She exhibited so much knowledge, caring and concern that, as she spoke, I felt my whole being start to relax. Don't get me wrong, she did not offer us a rosy picture, but the way she presented the information certainly helped to allay much of the fear of the unknown that I had been feeling.
Though the pathologist most likely will not conclude the biopsy testing until Monday, the doctor gave us 3 scenarios. The first and optimal one is that it is a benign tumor. Not very likely, but still a possibility. The second and most likely scenario is that it is sarcoma and had its origins in the primary tumor removed last January. This scenario, though not optimal, will necessitate several weeks of radiation therapy and then most likely places treatment right on track with the chemotherapy that was already planned to counteract the lesions in his lungs. The third, another highly unlikely scenario, is that it is a different malignancy, but even in that case there would be radiation and chemo treatments.
She did not promise anything more than what she and the other doctors could deliver. They will be providing us with the tools and ammunition to fight the cancer: radiation, chemo, support and hope.
Gina and I visited with him again very briefly this afternoon. His father and half-brother were there when we arrived, so I just said a quick "hello", gave him his cell phone charger, and stayed about 5 minutes and left. It's almost 8 PM now and Bruce and I will be going back up to say good night in a few minutes.
The doctors are still working on alleviating his headaches. You can see the pain in his face but the good news is that he's reporting the headache pain has gone down from "9" to "6 or 7" on a scale of 1 to 10.
Having him home in the next day or two would certainly be one of the best Christmas presents I could get this year and it's looking very promising right now.
This morning we went to the ICU waiting room and met one of Pete's long-time buddies sitting there. He had just been visiting with Pete a few minutes when he was asked to wait in there because they were taking Pete for his post-op MRI. I know MRIs take some time, so we sat and chatted for a while and then I got up and took the gift
tray of cookies (Bruce had picked up a couple of them for me to give to the nurses) and went in to check whether Pete had returned.
As luck would have it, he had just been in the room a few minutes when one Dr. LaN came in to talk with him. She was the one we had seen on Friday and had ordered the immediate MRI. She was a bit perturbed because, just as a "wet" sonogram had been ordered, she had ordered a "wet" MRI (see 12/19/2009), but the doctor who did the MRI did not report the findings immediately. They were not called in to the oncologists until Saturday morning, which precipitated their immediate call to Pete alerting him to irregularities in his brain.
She talked to us at length, answering our questions with clear and detailed explanations. She exhibited so much knowledge, caring and concern that, as she spoke, I felt my whole being start to relax. Don't get me wrong, she did not offer us a rosy picture, but the way she presented the information certainly helped to allay much of the fear of the unknown that I had been feeling.
Though the pathologist most likely will not conclude the biopsy testing until Monday, the doctor gave us 3 scenarios. The first and optimal one is that it is a benign tumor. Not very likely, but still a possibility. The second and most likely scenario is that it is sarcoma and had its origins in the primary tumor removed last January. This scenario, though not optimal, will necessitate several weeks of radiation therapy and then most likely places treatment right on track with the chemotherapy that was already planned to counteract the lesions in his lungs. The third, another highly unlikely scenario, is that it is a different malignancy, but even in that case there would be radiation and chemo treatments.
She did not promise anything more than what she and the other doctors could deliver. They will be providing us with the tools and ammunition to fight the cancer: radiation, chemo, support and hope.
Gina and I visited with him again very briefly this afternoon. His father and half-brother were there when we arrived, so I just said a quick "hello", gave him his cell phone charger, and stayed about 5 minutes and left. It's almost 8 PM now and Bruce and I will be going back up to say good night in a few minutes.
The doctors are still working on alleviating his headaches. You can see the pain in his face but the good news is that he's reporting the headache pain has gone down from "9" to "6 or 7" on a scale of 1 to 10.
Having him home in the next day or two would certainly be one of the best Christmas presents I could get this year and it's looking very promising right now.
Wednesday, December 23, 2009
Surgery Day - December 23, 2009
Pete, Gina (my daughter, visiting from California for the holiday) and I arrived right on time to the surgery suite at 6:15 AM. Pete was quickly taken away and a short time later the nurse came and escorted me and Pete's father (my ex) into the pre-surgery area. Pete was all hooked up to the IV and the nurse was completing all the paperwork. First we were met with one anesthesiologist, and then a second joined him. They explained how the anesthesia would be administered and advised us of the risks. Pre-op preparation, they told us, would take about an hour and a half. (I guess I wasn't thinking at the time exactly what that meant and why it would take that long, but as soon as I saw Pete post-surgery I understood.)
A few minutes after they left, the surgeon (Dr. E) came in. He discussed the procedure, its risks and the basic plan of "attack", just as he had on Monday when Pete and I had met with him in his office. I asked about the length of the surgery and the doctor replied that it was a long one and should take anywhere from 4 to 6 hours.
By this time it was just about 7:20. Two men and a woman, who identified herself as one of Pete's surgical nurses, came in and offered to have us follow them down the hall as they wheeled Pete off to the operating room so we could wish him well and then go back into the waiting room.
We had no news until after 12:30 when the nurse came in to say that he was out of surgery and that the doctor would be in to speak with us soon. About 15-20 minutes later Dr. E came in and called us into a small private room, just big enough to hold the 4 chairs and one small end table that were crowded in there.
He said that the surgery went pretty much as he had expected, but I was disturbed by the feeling that I was getting from the tone of his voice and his general demeanor. He was concerned that the tumor was attached to the wall, I think he actually said "invaded" the wall, of the main blood vessel for the brain. He said that he could not take any wider margin in that area for fear of damaging that supply and that there may still be some cancer cells that were left behind.
I asked him about the directed radiation therapy he and the oncologist had mentioned to us and his reply was that those decisions were best left to the radiation oncologists.
We waited some time before we actually got to see Pete when they moved him from recovery to ICU. I mentioned earlier about the long time for the pre-op prep, but when I saw several small holes located very symmetrically around his skull it dawned on me that the doctor had explained that this surgery was computer guided by the 3D MRI done the day before. Obviously, they had to secure Pete's head so that it could not move even a hair's breadth so that the surgery could be as precise as possible.
We visited for a brief time. He was thirsty and was complaining of a very bad headache. They administered a shot of morphine, and then a short time later a second shot. We left, hopefully the pain began to subside some, and came home because there is a break in the visiting hours between 6:30 -8:30 PM.
It's just about 8 PM now, and it's 1/2 hr drive to the hospital. I'm leaving to go up with Bruce (my husband) to spend a few minutes with him this evening.
There will be another MRI of the brain tomorrow.
A few minutes after they left, the surgeon (Dr. E) came in. He discussed the procedure, its risks and the basic plan of "attack", just as he had on Monday when Pete and I had met with him in his office. I asked about the length of the surgery and the doctor replied that it was a long one and should take anywhere from 4 to 6 hours.
By this time it was just about 7:20. Two men and a woman, who identified herself as one of Pete's surgical nurses, came in and offered to have us follow them down the hall as they wheeled Pete off to the operating room so we could wish him well and then go back into the waiting room.
We had no news until after 12:30 when the nurse came in to say that he was out of surgery and that the doctor would be in to speak with us soon. About 15-20 minutes later Dr. E came in and called us into a small private room, just big enough to hold the 4 chairs and one small end table that were crowded in there.
He said that the surgery went pretty much as he had expected, but I was disturbed by the feeling that I was getting from the tone of his voice and his general demeanor. He was concerned that the tumor was attached to the wall, I think he actually said "invaded" the wall, of the main blood vessel for the brain. He said that he could not take any wider margin in that area for fear of damaging that supply and that there may still be some cancer cells that were left behind.
I asked him about the directed radiation therapy he and the oncologist had mentioned to us and his reply was that those decisions were best left to the radiation oncologists.
We waited some time before we actually got to see Pete when they moved him from recovery to ICU. I mentioned earlier about the long time for the pre-op prep, but when I saw several small holes located very symmetrically around his skull it dawned on me that the doctor had explained that this surgery was computer guided by the 3D MRI done the day before. Obviously, they had to secure Pete's head so that it could not move even a hair's breadth so that the surgery could be as precise as possible.
We visited for a brief time. He was thirsty and was complaining of a very bad headache. They administered a shot of morphine, and then a short time later a second shot. We left, hopefully the pain began to subside some, and came home because there is a break in the visiting hours between 6:30 -8:30 PM.
It's just about 8 PM now, and it's 1/2 hr drive to the hospital. I'm leaving to go up with Bruce (my husband) to spend a few minutes with him this evening.
There will be another MRI of the brain tomorrow.
Tuesday, December 22, 2009
Immediate Surgery - December 22, 2009
Monday, December 21 - Pete's second round of chemo treatments were to resume this morning, so we were in the oncologists' office at 9 AM. Before they began, we met with one of the doctors, Dr. G, so she could share the findings of Friday's MRI report with us.
It seemed the "irregularities" were not just some minor irregularities. It was a spot located in the upper back, left side of his brain. She explained that this region contains the vision component and the headaches and what we thought were "optic" migraines were most likely the result of this mass pressing on the brain causing seizures. She spent quite some time explaining, examining, asking questions, but the recommendation was that we see a neurosurgeon as soon as possible.
When she finished, Pete went into the chemo "suite" and they started him off with IV fluids as normal. The nurse was on the phone and suddenly spoke to Pete. "You've got an appointment with the neurosurgeon. He wants to see you as soon as possible, and he wants you to bring the MRI films so he can look at them." I thought things were moving quickly before. Now they were moving at lightning speed.
This presents a bit of a dilemma. Here's Pete, hooked up to an IV, about to begin the chemo treatment that lasts 8 hrs. The MRI films are at the hospital 30 minutes away. The neurosurgeon's office is around the corner from the oncologist's office where we sit right now. Pete and I are discussing the logistics of getting the films up to the surgeon, when the doctors (oncologists & neurosurgeon) make the decision to not proceed with the chemo and get us on our way to the neurosurgeon.
We get in the car and plan on heading south to pick up the films, and then come back to the surgeon. We're not 2 minutes in the car when my son gets a call from the neurosurgeon. He will need the actual films eventually, but he can view the images online, so come right over to his office.
Considering Pete was an unexpected addition to the doctor's appointment schedule, we only waited about 1/2 hour before we were called into his office. Dr. E asked a series of questions, did a series of manual tests and some physical examination, and then called both of us over to see the MRI images on his computer. The white, quarter-sized spot was clearly visible against the dark background of the brain.
I can't even begin to remember all he said, but he was clear, confident and efficient. When we finished, we were taken to his scheduling assistant. She called in prescriptions for anti-seizure meds and pain meds because he believed that the "optic" migraines were not that at all, but actually seizures triggered by the mass in his brain. She also scheduled a sterotopic MRI (also known as “stealth” or "3D") and pre-op testing for Tuesday, moved one of his surgeries scheduled for Wednesday to a later date and put Pete in that slot.
So here's the plan. Today, Tuesday, December 22: Sometime today we pick up his MRI films shot on Friday. We go up to Monmouth Medical Center (where Dr. W-2 will be performing the surgery) around 9 AM to register for the 3D MRI scheduled for 10 AM, and then head to pre-admission testing. Brain surgery is scheduled for 7:30 AM, Wednesday, December 23.
The hospital stay should be 2-4 days so he could be coming home as early as Christmas day.
It will all go very well. It has to.
It seemed the "irregularities" were not just some minor irregularities. It was a spot located in the upper back, left side of his brain. She explained that this region contains the vision component and the headaches and what we thought were "optic" migraines were most likely the result of this mass pressing on the brain causing seizures. She spent quite some time explaining, examining, asking questions, but the recommendation was that we see a neurosurgeon as soon as possible.
When she finished, Pete went into the chemo "suite" and they started him off with IV fluids as normal. The nurse was on the phone and suddenly spoke to Pete. "You've got an appointment with the neurosurgeon. He wants to see you as soon as possible, and he wants you to bring the MRI films so he can look at them." I thought things were moving quickly before. Now they were moving at lightning speed.
This presents a bit of a dilemma. Here's Pete, hooked up to an IV, about to begin the chemo treatment that lasts 8 hrs. The MRI films are at the hospital 30 minutes away. The neurosurgeon's office is around the corner from the oncologist's office where we sit right now. Pete and I are discussing the logistics of getting the films up to the surgeon, when the doctors (oncologists & neurosurgeon) make the decision to not proceed with the chemo and get us on our way to the neurosurgeon.
We get in the car and plan on heading south to pick up the films, and then come back to the surgeon. We're not 2 minutes in the car when my son gets a call from the neurosurgeon. He will need the actual films eventually, but he can view the images online, so come right over to his office.
Considering Pete was an unexpected addition to the doctor's appointment schedule, we only waited about 1/2 hour before we were called into his office. Dr. E asked a series of questions, did a series of manual tests and some physical examination, and then called both of us over to see the MRI images on his computer. The white, quarter-sized spot was clearly visible against the dark background of the brain.
I can't even begin to remember all he said, but he was clear, confident and efficient. When we finished, we were taken to his scheduling assistant. She called in prescriptions for anti-seizure meds and pain meds because he believed that the "optic" migraines were not that at all, but actually seizures triggered by the mass in his brain. She also scheduled a sterotopic MRI (also known as “stealth” or "3D") and pre-op testing for Tuesday, moved one of his surgeries scheduled for Wednesday to a later date and put Pete in that slot.
So here's the plan. Today, Tuesday, December 22: Sometime today we pick up his MRI films shot on Friday. We go up to Monmouth Medical Center (where Dr. W-2 will be performing the surgery) around 9 AM to register for the 3D MRI scheduled for 10 AM, and then head to pre-admission testing. Brain surgery is scheduled for 7:30 AM, Wednesday, December 23.
The hospital stay should be 2-4 days so he could be coming home as early as Christmas day.
It will all go very well. It has to.
Saturday, December 19, 2009
And the Hits Keep Comin' - December 19, 2009
I'm okay. At least that's what I keep telling myself.
We weathered the pneumonia, the edema, the first type of chemo, etc. We’ve continued to muddle through the tests, tests and more tests and were feeling pretty good about things finally starting to look up. Then came this past Thursday.
On Thursday I had some errands to run, people to meet and things to do pretty much most of the day and it started with meeting a group of my former colleagues, all now retirees, for our monthly breakfast to catch up on what's been happening in our lives, so I was out of the house before Pete had awakened. Somewhere in the early afternoon I got a strange text from him asking when I was going to be coming home and mentioning something about a doctor appointment.
I try to keep close track of his scheduled appointments and I didn't recall him having one scheduled but when I texted him back and asked about it he just said "nothing important".
When I did get home a little later, Bruce told me that Pete had gone out and was still out. When he finally got home and I asked him about the doctor appointment he said, "Remember when I mentioned my arm was a little sore and I thought I had just slept on it wrong? Well..." He pulled up his sleeve and showed me his arm, just a little below the elbow joint and the end of the scar where they had removed the mass. The area was all red, swollen and very warm to the touch. He had called his GP in the morning after he got up. They got him in for an early afternoon appointment so that was where he had been.
The doctor said she didn't know what it was or what may have caused it, and she couldn't imagine it being an infection because there was no sign of where any infections could have entered; no scratches, cuts or broken skin. But to be on the safe side, she prescribed an antibiotic (and we wonder why we have "super bacteria" and antibiotic-resistant germs) and told him to just go home and keep an eye on it. Famous last words. That's exactly what the doctor had said when he first found the pea-sized mass in his arm over a year ago.
That didn't sit well with me, so I started bugging him to call his oncologist. Since it was now about 5 PM, he promised he would call first thing in the morning. My stomach was in a knot so I spent the evening and most of the night in front of my computer working on developing salary guides (long story short: I was the president and chief negotiator for my local the last few years before I retired and was helping the union out by working on their new guides for the latest contract).
At 3:30 AM, I decided I had to at least TRY to get some sleep, and since I had pretty much finished the guides, I crawled into bed. I laid there and watched the minutes go by, one-by one, until I couldn't lie there anymore. It was now 5:30 AM.
Pete finally called his oncologist around 10. They told him to go immediately to our local hospital and arranged to have a "wet" sonogram of the affected area. The fear was that it was DVT (deep vein thrombosis) which can release the clot that will move to the lungs and if it does, the result is a pulmonary embolism. Great.
So off to the hospital we went. The "wet" part of the sonogram apparently refers to the fact that the ordering doctor wants the results immediately, as in "before the ink on the report is dry". When the sonogram was completed they told my son to just sit for a moment. A few minutes later the technician walked back into the room, said "the doctor who read the sonogram said it's not DVT and they'll be contacting you because they want to see you". He turned to walk back out of the room and Pete's cell phone rang. It was the oncologist's office. They told him that they made an appointment for him and wanted him up there to see the doctor. It was now about 12:30 and the appointment was for 2:30.
We stopped at the convenience store on the way home and he grabbed a quick sandwich for lunch, ran in the house, ate, and were back in the car heading up to see the oncologist. (Thank goodness we didn't have to go all the way into Manhattan to MSKCC.)
In the meantime, between Wednesday morning when he first noticed the painful, red, swollen area, and Thursday morning, the redness had begun to fade, the swelling started to go down and in its place there was a mass, about pea-sized, on his arm. It was similar in size to the original lump that had started this crazy roller-coaster ride.
Now I was really ready to freak out, but I didn't. We're in with Dr. LaN (another doctor in this practice) and she calls the doctor who had read the sonogram and starts asking more about what they had found. They knew that it was NOT a DVT, but could they tell what it MIGHT be?
She explains to us that because it was not "fluid-filled" that pretty much ruled out a cyst. So that means it may be a lymphoma. When I heard that, my heart jumped into my throat. "May be" are the words I had to focus on, because "may be" also means "may NOT be". In our favor was the fact that this lump just popped up overnight, as it were, and the doctor just didn't know of anything that could appear that fast.
As we sat there and Dr. LaN asked if he had anything else to say he mentioned that he had been having "optic" migraines and plain headaches lately. Now I don't know if you're familiar with an "optic" migraine, but I've had a couple over the years. There generally is no pain involved, and it's not like a migraine headache. It's more like you looked straight at a flashbulb when it went off, and the after-effect of seeing a black spot somewhere in you field of vision with a varying degree of "fireworks" going off in the area outside the spot. It can be mild enough to be a simple annoyance or it can be so dramatic that you can't even walk because you can't see anything BUT the spot and brilliant flashes. Duration, as well, can be short or lengthy.
This news started the doctor asking whether anyone had ever ordered an MRI of his head/brain. The answer was "no". Every scan, x-ray and MRI had been from the jaw line down through the pelvis. So before we left the office they were working on setting up for the MRI of his head ASAP.
Back to the small mass on his arm, the one that may be lymphoma. The only way to identify what it is is with a biopsy. So they began working on setting up a fluoroscopic biopsy as well.
So what does all this do to the start of his 3-day-long-all-day-long chemo treatments scheduled to begin Monday (which is the day after tomorrow at this point in time)? Since time is of the essence in this battle they will proceed as scheduled.
We left the office and a short time after we arrived back home around 5 PM they called with his appointment time for the MRI of 7:30 PM. We ate dinner and he headed over to the hospital for the second time that day. We'll probably get the results when we go in for chemo on Monday.
Finally home from the hospital, he was sitting on the edge of his bed, taking his shoes off, and began grumbling about not seeing why it was so rushed to get these tests done right away. I didn't say it, but what I was thinking was this: If the original doctors, a GP, when he first brought that little pea-sized lump to his attention, or the surgeon to whom the GP sent him when the lump had grown to grape-size, had moved a little faster, had not waited a moment longer, had not simply advised him to "keep an eye on it", and not told him "your insurance won't pay to have it removed because it's only cosmetic"; if they had been a bit more pro-active, he might not be in the position he is in right now.
From the moment I first learned of his diagnosis with soft tissue sarcoma I have been enveloped in a numb kind of feeling that continues even now. From time to time I do break down, but those times are few and far between. Every day I resolve to just put one foot in front of the other, keep moving forward, think positive. And I pray.
As I was typing, Pete came in. He was visiting at his father's this morning and apparently he got a call from the oncologist. There are some abnormalities on the brain MRI. More tests will have to be done.
We weathered the pneumonia, the edema, the first type of chemo, etc. We’ve continued to muddle through the tests, tests and more tests and were feeling pretty good about things finally starting to look up. Then came this past Thursday.
On Thursday I had some errands to run, people to meet and things to do pretty much most of the day and it started with meeting a group of my former colleagues, all now retirees, for our monthly breakfast to catch up on what's been happening in our lives, so I was out of the house before Pete had awakened. Somewhere in the early afternoon I got a strange text from him asking when I was going to be coming home and mentioning something about a doctor appointment.
I try to keep close track of his scheduled appointments and I didn't recall him having one scheduled but when I texted him back and asked about it he just said "nothing important".
When I did get home a little later, Bruce told me that Pete had gone out and was still out. When he finally got home and I asked him about the doctor appointment he said, "Remember when I mentioned my arm was a little sore and I thought I had just slept on it wrong? Well..." He pulled up his sleeve and showed me his arm, just a little below the elbow joint and the end of the scar where they had removed the mass. The area was all red, swollen and very warm to the touch. He had called his GP in the morning after he got up. They got him in for an early afternoon appointment so that was where he had been.
The doctor said she didn't know what it was or what may have caused it, and she couldn't imagine it being an infection because there was no sign of where any infections could have entered; no scratches, cuts or broken skin. But to be on the safe side, she prescribed an antibiotic (and we wonder why we have "super bacteria" and antibiotic-resistant germs) and told him to just go home and keep an eye on it. Famous last words. That's exactly what the doctor had said when he first found the pea-sized mass in his arm over a year ago.
That didn't sit well with me, so I started bugging him to call his oncologist. Since it was now about 5 PM, he promised he would call first thing in the morning. My stomach was in a knot so I spent the evening and most of the night in front of my computer working on developing salary guides (long story short: I was the president and chief negotiator for my local the last few years before I retired and was helping the union out by working on their new guides for the latest contract).
At 3:30 AM, I decided I had to at least TRY to get some sleep, and since I had pretty much finished the guides, I crawled into bed. I laid there and watched the minutes go by, one-by one, until I couldn't lie there anymore. It was now 5:30 AM.
Pete finally called his oncologist around 10. They told him to go immediately to our local hospital and arranged to have a "wet" sonogram of the affected area. The fear was that it was DVT (deep vein thrombosis) which can release the clot that will move to the lungs and if it does, the result is a pulmonary embolism. Great.
So off to the hospital we went. The "wet" part of the sonogram apparently refers to the fact that the ordering doctor wants the results immediately, as in "before the ink on the report is dry". When the sonogram was completed they told my son to just sit for a moment. A few minutes later the technician walked back into the room, said "the doctor who read the sonogram said it's not DVT and they'll be contacting you because they want to see you". He turned to walk back out of the room and Pete's cell phone rang. It was the oncologist's office. They told him that they made an appointment for him and wanted him up there to see the doctor. It was now about 12:30 and the appointment was for 2:30.
We stopped at the convenience store on the way home and he grabbed a quick sandwich for lunch, ran in the house, ate, and were back in the car heading up to see the oncologist. (Thank goodness we didn't have to go all the way into Manhattan to MSKCC.)
In the meantime, between Wednesday morning when he first noticed the painful, red, swollen area, and Thursday morning, the redness had begun to fade, the swelling started to go down and in its place there was a mass, about pea-sized, on his arm. It was similar in size to the original lump that had started this crazy roller-coaster ride.
Now I was really ready to freak out, but I didn't. We're in with Dr. LaN (another doctor in this practice) and she calls the doctor who had read the sonogram and starts asking more about what they had found. They knew that it was NOT a DVT, but could they tell what it MIGHT be?
She explains to us that because it was not "fluid-filled" that pretty much ruled out a cyst. So that means it may be a lymphoma. When I heard that, my heart jumped into my throat. "May be" are the words I had to focus on, because "may be" also means "may NOT be". In our favor was the fact that this lump just popped up overnight, as it were, and the doctor just didn't know of anything that could appear that fast.
As we sat there and Dr. LaN asked if he had anything else to say he mentioned that he had been having "optic" migraines and plain headaches lately. Now I don't know if you're familiar with an "optic" migraine, but I've had a couple over the years. There generally is no pain involved, and it's not like a migraine headache. It's more like you looked straight at a flashbulb when it went off, and the after-effect of seeing a black spot somewhere in you field of vision with a varying degree of "fireworks" going off in the area outside the spot. It can be mild enough to be a simple annoyance or it can be so dramatic that you can't even walk because you can't see anything BUT the spot and brilliant flashes. Duration, as well, can be short or lengthy.
This news started the doctor asking whether anyone had ever ordered an MRI of his head/brain. The answer was "no". Every scan, x-ray and MRI had been from the jaw line down through the pelvis. So before we left the office they were working on setting up for the MRI of his head ASAP.
Back to the small mass on his arm, the one that may be lymphoma. The only way to identify what it is is with a biopsy. So they began working on setting up a fluoroscopic biopsy as well.
So what does all this do to the start of his 3-day-long-all-day-long chemo treatments scheduled to begin Monday (which is the day after tomorrow at this point in time)? Since time is of the essence in this battle they will proceed as scheduled.
We left the office and a short time after we arrived back home around 5 PM they called with his appointment time for the MRI of 7:30 PM. We ate dinner and he headed over to the hospital for the second time that day. We'll probably get the results when we go in for chemo on Monday.
Finally home from the hospital, he was sitting on the edge of his bed, taking his shoes off, and began grumbling about not seeing why it was so rushed to get these tests done right away. I didn't say it, but what I was thinking was this: If the original doctors, a GP, when he first brought that little pea-sized lump to his attention, or the surgeon to whom the GP sent him when the lump had grown to grape-size, had moved a little faster, had not waited a moment longer, had not simply advised him to "keep an eye on it", and not told him "your insurance won't pay to have it removed because it's only cosmetic"; if they had been a bit more pro-active, he might not be in the position he is in right now.
From the moment I first learned of his diagnosis with soft tissue sarcoma I have been enveloped in a numb kind of feeling that continues even now. From time to time I do break down, but those times are few and far between. Every day I resolve to just put one foot in front of the other, keep moving forward, think positive. And I pray.
As I was typing, Pete came in. He was visiting at his father's this morning and apparently he got a call from the oncologist. There are some abnormalities on the brain MRI. More tests will have to be done.
Friday, December 4, 2009
Today is Day 3 of 3 - December 04, 2009
A few things changed - again. Apparently there was not enough time to schedule the MUGA scan, so they did an echo-cardiogram. I'm not thoroughly convinced that it was a time factor. My gut tells me that it may have has something to do with his insurance balking at paying for the test. Time, though, is critical and it would not have been in his best interest to hold up the treatments and waste time making a dozen calls to the insurance company, since his doctor assured us that the echo-cardiogram would be able to assess the heart function.
Tuesday he went in for the port. The procedure was scheduled for 1 PM and they told him to get to the hospital an hour ahead of time, so we arrived about 11:45. After about 1/2 wait, we were taken into a pre-op room where we waited again. About 1:30 a nurse came in and put in the IV line, but didn't hook it up to any fluids. About an hour later, someone came in and moved us to the surgery floor, where we waited until 3 when the doctor finally came in and explained the procedure. Finally, around 3:30 the nurse came in, hooked his IV up and he was taken into surgery a short time later. He came out a bit after 4 and I sat with him while he slowly woke up. We walked out of the hospital about an hour later.
During the 6 hours we were there, and not counting the surgery time, we may have had a total of 15 min of contact with hospital personnel, and that's being generous. I have to say that this hospital, which is supposed to have a great reputation as a long-time teaching hospital and is a noted trauma center in NJ, seemed to be the most unorganized and disinterested in their patients. Pete, who hadn't eaten all day, was ravenous by the time we were heading home, so we stopped for a few slices of pizza on the way, which he quickly devoured during the rest of the ride.
Wednesday he had his first infusion. They did the normal blood work and started the first drip around 10. He insisted that I not wait around the whole day, so I left around 10:30. We texted a few times during the day and I went back around 4. He finished up a little before 5 and we were back home about half past.
I ate a quick dinner and ran over to Costco pharmacy to pick up the Rx's that the doctor had called in for him. Thank goodness for medical insurance, because one of them was over $1,000! His copay on that one was $50.
He was a bit tired from the long day, but was ready for Day 2 the next morning. His father, who lives 1 street over and works just a couple of miles from the oncology center, picked him up and also brought him home after the treatment.
There were more Rx's that needed to be picked up and Pete was still feeling pretty good, so he went to Costco with Bruce and I. Since Pete's a pharmacy tech at Costco and has worked there since it first opened in the early 90's, it took him quite a while to make his way to the pharmacy area and back out. Word must have spread like wildfire that he was there because so many of the workers were finding him and chatting. He was even stopped by several customers, most elderly, who were some of his "regulars" at the pharmacy counter. Everyone was so happy to see him, asked how he was doing and wished him well. It must have made him feel pretty good and I have to say it made me proud to know he's the kind of person that elicits that kind of response from people, whether they are co-workers or customers.
Today is the final day of infusion. His father took him there this morning and I'll be picking him up when the day is over. So far, everything is going well for him. He's been getting the anti-nausea meds interspersed with the chemo and other drugs to counteract the bad side-effects, and has been taking all the oral meds at home as instructed. He was advised, over and over, to take the oral anti-nausea drugs for several more days even if he doesn't feel sick because if you wait until you start to feel sick, it's too late.
It's been our experience, and is in line with everything that I've read, that the 3rd day after chemo is when things generally deteriorate. Tomorrow is the 3rd day after the first infusion, so we'll be keeping our fingers crossed that the next few days go as smoothly as possible.
Friday Evening Update: Ok, he's home and exhausted. He just about got in the house, stumbled to his room, flopped down on his bed and fell fast asleep. I had to go to pick up his "Nulasta" injection for tomorrow. I thought the other Rx was pricey - this one has it beat hands down! One injection, just one, and the cost is just pennies shy of $3,500. How do people without insurance handle this?
Tuesday he went in for the port. The procedure was scheduled for 1 PM and they told him to get to the hospital an hour ahead of time, so we arrived about 11:45. After about 1/2 wait, we were taken into a pre-op room where we waited again. About 1:30 a nurse came in and put in the IV line, but didn't hook it up to any fluids. About an hour later, someone came in and moved us to the surgery floor, where we waited until 3 when the doctor finally came in and explained the procedure. Finally, around 3:30 the nurse came in, hooked his IV up and he was taken into surgery a short time later. He came out a bit after 4 and I sat with him while he slowly woke up. We walked out of the hospital about an hour later.
During the 6 hours we were there, and not counting the surgery time, we may have had a total of 15 min of contact with hospital personnel, and that's being generous. I have to say that this hospital, which is supposed to have a great reputation as a long-time teaching hospital and is a noted trauma center in NJ, seemed to be the most unorganized and disinterested in their patients. Pete, who hadn't eaten all day, was ravenous by the time we were heading home, so we stopped for a few slices of pizza on the way, which he quickly devoured during the rest of the ride.
Wednesday he had his first infusion. They did the normal blood work and started the first drip around 10. He insisted that I not wait around the whole day, so I left around 10:30. We texted a few times during the day and I went back around 4. He finished up a little before 5 and we were back home about half past.
I ate a quick dinner and ran over to Costco pharmacy to pick up the Rx's that the doctor had called in for him. Thank goodness for medical insurance, because one of them was over $1,000! His copay on that one was $50.
He was a bit tired from the long day, but was ready for Day 2 the next morning. His father, who lives 1 street over and works just a couple of miles from the oncology center, picked him up and also brought him home after the treatment.
There were more Rx's that needed to be picked up and Pete was still feeling pretty good, so he went to Costco with Bruce and I. Since Pete's a pharmacy tech at Costco and has worked there since it first opened in the early 90's, it took him quite a while to make his way to the pharmacy area and back out. Word must have spread like wildfire that he was there because so many of the workers were finding him and chatting. He was even stopped by several customers, most elderly, who were some of his "regulars" at the pharmacy counter. Everyone was so happy to see him, asked how he was doing and wished him well. It must have made him feel pretty good and I have to say it made me proud to know he's the kind of person that elicits that kind of response from people, whether they are co-workers or customers.
Today is the final day of infusion. His father took him there this morning and I'll be picking him up when the day is over. So far, everything is going well for him. He's been getting the anti-nausea meds interspersed with the chemo and other drugs to counteract the bad side-effects, and has been taking all the oral meds at home as instructed. He was advised, over and over, to take the oral anti-nausea drugs for several more days even if he doesn't feel sick because if you wait until you start to feel sick, it's too late.
It's been our experience, and is in line with everything that I've read, that the 3rd day after chemo is when things generally deteriorate. Tomorrow is the 3rd day after the first infusion, so we'll be keeping our fingers crossed that the next few days go as smoothly as possible.
Friday Evening Update: Ok, he's home and exhausted. He just about got in the house, stumbled to his room, flopped down on his bed and fell fast asleep. I had to go to pick up his "Nulasta" injection for tomorrow. I thought the other Rx was pricey - this one has it beat hands down! One injection, just one, and the cost is just pennies shy of $3,500. How do people without insurance handle this?
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