Welcome to Hope Lodge - Day 2 of 10 - September 29, 2010

Bruce came with us into the city this morning as planned. The iv fluids, potassium, sodium bicarbonate, etc. went pretty smoothly and Pete slept for most of the time again. The only problem he experienced today was something that had surfaced yesterday. Hiccups. He had a few bouts of them when he would eat or drink something yesterday, but they only lasted for a minute or so and then he'd be done with them. Today, though, when he took a drink of water they started and just didn't want to stop and they were quite strong. D said she would give him something (Ativan) that relaxes the muscles of the diaphragm, because the hiccups can become very severe in some individuals.

Once his ivs were finished and he was again hooked up to the infusion pump we got in the car and headed toward Hope Lodge. Yeah, right. Easier said than done. New York city is a grid of avenues and cross streets that appear, on paper, to be easily navigated. We started out on 15th Street between 8th and 9th Avenues and wanted to get to 32nd Street between 6th and 7th Avenues. Two blocks over and 17 blocks up. Except many of the steets are "one way"s and it seems that they're never going the way you actually need to go. Then there are all the streets that you are prohibited from turning onto, whether they're one way or two way or whether you want to turn right or left. Combine with the streets that you "just can't get to from here" to complete the headache. 32nd just happens to be one of those streets. If you happen to be travelling along 32nd Street you will suddenly find yourself blocked by a building. In our case, we wanted to turn onto 32nd Street. We passed 30th, then 31st and then 33rd. Wait, what happened to 32nd? Right were it should have been was a huge building.

33rd was going the wrong direction so we drove until we got to a street that was headed in the right direction, turned there but when we got to the steet we wanted to turn onto, there was a "no turn" sign. We just kept "spiraling" around and around until we finally got to our destination. All I can say is that it confirmed that our decision to send the car home with Bruce was a wise one.

Hope Lodge is lovely. We're on the 12th floor and right now I'm ready to head over to the kitchen, which happens to be directly across from our room, and make myself a nice cup of herbal tea. More about the Lodge, maybe with pictures, later.

Round 2 - Day 1 of 10 - September 28, 2010

Pete's day began about 7:45 AM with blood work, vitals, and an iv of fluids and potassium, sodium bicarbonate and then the Ifosfomide and Mesna. All that finished up just about 3 PM; D hooked up the infusion pump and we headed home.

Pete napped off and on a good part of the morning while on the iv. D reported that Pete's potassium level was on the high side and instructed him to forego the oral potassium the rest of the day. A stopped by and told us that Dr R would be back on Monday. Around noon, Pete woke up hungry so I walked over to Chelsea Market to get him a sandwich. While I was out, someone from Hope Lodge called and told him that there was a room available for us today. The problem was that this was the first we had heard from them and had not come prepared to do anything other than head back home at the end of the day. They suggested he contact the social worker and see if things could be worked out.

To make a long story short, Bruce will drive us into the city tomorrow morning for Pete's 10 AM appointment. When Pete's finished he'll drive us to Hope Lodge and then we'll be on our own there until Monday. We toyed with the idea of having the car there, but the person Pete spoke with at Hope Lodge said that the parking is difficult and the garages are quite expensive, hence, having Bruce shuttle us around tomorrow made the most sense. There's a subway that runs right across from Hope Lodge to a short block away from Beth Israel. And if Pete's not up to taking the subway, there are always NY taxis.

We're packing light, but there are still some things we have to get ready, so that's all for now.

Allergies, Perhaps - September 26, 2010

Yesterday morning Pete was silent. Literally. Somewhere between Friday night and Saturday morning his voice was no where to be heard. He had mentioned to A that his throat felt a bit scratchy when we were in for his blood work and she looked at it and said there was a bit of irritation, but didn't feel it was anything serious.

Pete has had "hay fever" type allergies in the past; the typical runny nose, itchy, watery eyes and scratchy throat, an occasional sneeze. The past few days he has had a case of the "sniffles" and after I had come in from doing some yard work the other day I had a case of the "sneezes" and must have "a-chood" at least a dozen times or more, so there were probably a lot of allergens floating around. Since he had no fever along with the scratchy throat or with the lost voice it's most likely just allergies which may be affecting him a bit differently due to the chemo influence.

His voice started to come back later in the afternoon, and this morning it was almost back to normal volume, but it does have a touch of that "nasal" quality so typical of stuffy sinuses.

Tuesday startes the next round of chemo. No word on when the radiation starts.

Oh, almost forgot. He started losing his hair the other day. It had started growing back when he was on the DTIC, but I guess the Ifosfomide has kicked in. Let's hope it's kicking the cancer cells along with the hair.

A Note From Pete - September 25, 2010

Pete posted this on his FaceBook page. I asked him if I could include it here and he said yes so here it is:

Thanks everyone for all of the well-wishes, prayers, and support. I haven't been on-line very much lately for several reasons, not the least of which was the general feeling of malaise due to the extensive chemo treatment I have recently begun.

Most of my closest friends have a pretty good idea of what is going on, but I have heard ...some stories that I have already had surgery, etc., and other such details that are not entirely accurate. I will give (anyone who is interested, at least) a way of keeping informed so that people wil not be surprised by such erroneous info, so just read through to the end of this "explanation", and I will provide a link that can give you all the details you might want.

I am sometimes saddened at the fact that I do not have a wife and family to help me through some of the tough times. I suppose I am mostly happy that I do not have a wife and family at this time, who would have to endure this hardship with me. As it is, the single most difficult part of my struggle is watching my family and closest friends deal with my hardship. They have all been extremely helpful (an understatement) and provided me a great deal of the strength I need to continue fighting.

I hate the feeling of not being completely independent, but there have been (and will undoubtedly continue to be) days when I am incapable of doing some thing for myself, such as driving (and NO I have not been so bad I can't take care of the three S's myself : Shit-Shower-Shave). I'm sure any of my family (and friends on occasion) could help me out on those days, but because she is retired, most of the task of helping me has fallen upon my mother, and I am eternally grateful for that. Since she has been so integrally involved in my care, she has (with my permission) been blogging about my ordeal, almost from the very beginning.

So, as I explained earlier, if anyone is so inclined to follow, or simply check up on what others have said is going on with me you can do so here: http://pete-vs-sarcoma.blogspot.com/

Bloodwork #2 Post Infusion - September 23, 2010

It was a relatively quick and painless trip to Beth Israel this morning for blood work. All the numbers are good, electrolytes are good, hydration is good, etc. A stopped by and asked Pete whether he'd prefer starting the next round of chemo on Monday or Tuesday. He chose Tuesday.

O also stopped by and asked how the acupunture went. Pete told her that the pain seems to have lessened, but not to the extent as he experienced after the first session. She told him that the most dramatic improvement does usually come after the first treatment and with subsequent treatments the changes are more subtle.

B, the social worker, is out until some time next week, so it was suggested we call D2 to see if we could find out our status for Hope Lodge. I'm fairly confident that things will go well for the second round, so Pete and I discussed our options. Neither of us was really happy at the hotel and the cost was pretty hefty. There is a campground at Liberty Island State Park and we could take our RV up there. It's actually a lot closer to the city than it was from the hotel and quite a bit less costly. Of course, we'd also have to have a car since taking the rig into the city would be a real headache, especially trying to park it!

For now, we'll most likely start out from home and just do the commuter thing. We've been though it once so we know how the drill goes. The first and last days are the 8-hour marathons, but if they make the appointment time for the intermediate days around 10 we should have very little problem with the traffic going either direction. We'll just play it by ear and hope for the best.

Acupuncture Session 2 - September 21, 2010

Pete and I went in for his second acupuncture session. It included his shoulder area again, but also his lower back. He can't really tell if there's any difference yet because his back (herniated discs, not related to the cancer) was still very uncomfortable when we got home so he took something for the pain. It has eased a bit, but he's not sure whether the pain has lessened because of the acupuncture or the pill.

On the way home I was asking him whether he had any idea when the next chemo session would be. He surprised me when he said that A had seen him yesterday and told him that he might begin the second round as early as next week and that the scans would not be done for a few more weeks. I'm assuming that they would consider starting the next round that quickly because he's doing so well, but not having been there to hear what she said or to ask questions, that's just my guess. She did tell Pete that she would be consulting with Dr R, who is at a conference in Greece right now, for the final decision on how and when to proceed.

Tomorrow Pete has an appointment with the local radiology oncologist, Dr W2. He was originally scheduled to have an brain MRI done last week, but since he had the one ordered by Dr R just 3 weeks ago he checked with Dr W2 and will bringing that report and CD to his appointment.

Thursday we'll be going back up for the next round of blood work. Things are moving ahead, one day at a time.

Blood Test Results - September 20, 2010

Pete's back home, numbers are good so his next appointment for bloodwork is Thursday. Things are going well.

Morning of Blood Work #1 - Post Infusion - September 20, 2010

Pete just left a few minutes ago with his father. He has Mondays off, so he decided to go in with Pete today. I'm pretty confident that his numbers will still be good and expect they'll be back in a few hours. I made Pete promise to text me after he gets the report. Yesterday he said he was feeling a bit "off" but couldn't really express what that meant, and some of the things they look for can be very subtle. He's been drinking plenty of water to keep hydrated and has actually had a few cups of coffee, something that probably makes him feel things are more "normal".

Tomorrow I'll go in with him for his acupuncture session.

When I signed on here this morning I saw that there was a new "follower", so I went to his blog and read through it. His name is Gary and he has Synovial Sarcoma. One of his posts included a link to a YouTube video that I felt was so incredible and inspiring I'm posting it here as well: The Last Lecture

Thanks, Gary.

So Far, So Good - September 18, 2010

We're going with the flow, trying to have normal days. Pete is doing well and has been experiencing a few side effects, but not any that are significant. His taste is off so coffee has become a thing of the past, certain foods he used to enjoy have dropped from favor, and he gets cravings for some that were not former choices. He also becomes very fatigued easily.

He's monitoring his temperature to serve as an early warning system for any changes that might signal the start of a problem. His spirits are good and it seems he's been sleeping better now that he's back in his own bed.

We're half-way to blood test day and things are lookin' good.

Day 10 of 10 - September 16, 2010

We are HOME!

Last evening Pete was feeling pretty good so we went out to dinner to celebrate his "freedom from tubes" and the end of the continuous infusion of Ifosfomide. I think he surprised both of us with a very respectable appetite. Afterward we went back to the hotel room and packed up everything but what we would need to start the next day.

A toasted bagel for breakfast and into the shower he went while I began carrying my bags down to the car. Once he was out and dressed, we took the rest of our stuff down and he went back in to check us out. I handed him my room "key" and just as he turned the corner to go in I realized that I needed the key to get out of the hotel parking lot. Thank heavens for cell phones! I quick texted him and pulled around to wait by the gate. He walked out of the front door with a silly smile on his face, handed me the "key" and then turned back to finish the check out as I drove through the open gate.

D had told us he could arrive at 9:30 for blood work, go to his Reiki appointment at 10 and then go in to see her to get his Neulasta shot and final walking papers. When he came out of the Reiki treatment I asked him how it went. He said that there was soothing background music and aroma therapy which created a very calming atmosphere. The Reiki master began at his head with what Pete described as a gentle massage. She moved downward, not using massage but simply laying her hands lightly on his body as she worked her way down to his feet, where she again resumed a very gentle massage. He said the experience was extremely relaxing and peaceful.

D greeted with a big smile and told us that Pete's blood work looked very good. His white blood cell count was down slightly, but the numbers were still strong. She gave him his Neulasta shot and said that his counts were so good that he probably would not have to return until Monday. That was quite a pleasant surprise for us because that meant Pete would have 3 days to really relax and recoup. Of course, we'll have to be alert for any sign of infection/fever, and as an added precaution he will be taking a prophylactic antibiotic that she called in to his pharmacy.

We left the hospital and walked through Chelsea Market on the way to the parking garage, picked up a few goodies from a couple of the shops, got into the car and set out for home. Knowing that we'd be able to stay there for at least the next several days and nights really lifted our spirits.

It sure is good to be home!

Day 9 of 10 - September 15, 2010

Today's ride into the city was, for some reason, an easy one with very little traffic. Even though we were early, D set Pete up with his drip and decided against fighting the port for a blood return, taking the blood from his arm. Pete hadn't felt like having anything for breakfast before we left the hotel, but around 10:30 when I asked if he'd like me to run out for something to eat, he decided that soup, something like split pea with some bread, sounded good to him.

I brought back soup from Hale and Hearty , pumpernickle rolls from Amy's Bread, and herbal tea from Eleni's bakery.

Pete and I thought that today was going to be another 4 hour day, but when the drip finished around noon, D came in to tell us that today was the eight hour day, and that Pete still needed a bolus of Mesna. Our confusion was because we were thinking "days" when Dr R was talking "treatments". There were nine treatments scheduled, but the first day, last Tuesday, actually represented two treatments. The first was the iv infusion, the second was the one that began with the continuous infusion pump that Pete left with. That meant that the ninth, and final treatment, ended this morning when D disconnected the pump.

When we left the hospital, Pete was ecstatic. For the first time since this treatment began he was not hooked up to the pump.

Tomorrow, Pete has his Reiki appointment at 10, so D told us to come in at 9:30 for blood work, go for the Reiki at 10, and then come back for the Neulasta shot. After that, we'll head back home and Pete will have Friday free.

Day 8 of 10 - September14, 2010

Acupuncture was the first item on the agenda this morning. I dropped him off at the hospital, parked the car and went into the treatment area to wait. It was about a half hour session with K, who told Pete that he is not only an acupuncturist but also an optometrist.. Pete said that it was an interesting experience. When he laid down, the first thing K did was to press his finger on Pete's right hip joint and ask "do you have any pain here?" Pete said he jumped because it is the exact spot where he does have pain from a torn labrum, something that is unrelated to the cancer.

When Pete was finished and came into the hospital room I asked him how it went. He said it was strange because the pain, which was a sharp pain in the upper area of his scapula has subsided, but the achy dull pain a bit lower was still there. Right now it's about 5:30 and I just asked him how he's doing with the pain. He said that it seems that the relief from the sharp pain has continued and the dull, achy pain is still there but is much more tolerable.

B, the social worker, stopped by and told us that he had contacted Hope Lodge and they told him that at the moment they are full and have put us on the waiting list. As soon as there is an opening they'll let us know.

While Pete was having the acupuncture, D, his nurse stopped in to chat with me and asked if I'd like to sit down with one of the social workers and just talk about how I'm handling all of the stress. I figured it wouldn't hurt and shortly after Pete came into the room, one of the other social workers, D2, came in and introduced herself. We went to the small library/reading room down the hall and sat and talked. It was just pretty much background, what Pete's been through since first diagnosed, and how I'm "handling" everything. I told her that I'm doing okay, that I have a good support system, and that I've had plenty of practice being a caregiver. Pete and I are on the same page and that is "you play the hand you're dealt." It might suck, but there's not a thing you can do to change it, so you make the best of it.

When we were done with our chat, I went back to Pete and asked if he felt like tea or food. When he said yes, I walked over to Chelsea Market and made some purchases at several of the shops and brought back chicken noodle soup from a "soup" shop that was highly recommended by several of the nurses. Pete said it was excellent, though he didn't care much for the half-sandwich I brought back for him. We also had herbal tea.

Dr R and A had stopped in to check on him while I went to get the food. There was no blood return again today, but because his blood work has been consistently good, the doctor said they could pass on fighting to get blood today. The rest of the treatment period was uneventful.

Tomorrow is the last 4 hour day. Thursday will be 8 hours because he'll be getting his final Mesna infusion. We're planning on leaving the hotel and heading home at the end of that day. We're both looking forward to being back home, even if it's just for a few days.

Day 7 of 10 - September 13, 2010

When I looked at the date I realized that today would have been my dad's 102nd birthday. But on to other things.

D was Pete's nurse again and got a blood return on the first try. Hooray! A, Dr R's PA, spoke to us briefly and a short time later Dr R came in. He said that the chemo was the easy part and asked if we had heard anything from Hope Lodge because after Pete's done with the 10 days of chemo comes the hard part. That's when the white blood cell count plummets and fevers and other dangerous side effects occur. Pete will have to have blood work done every other day to monitor the counts and watch for any problems that might start to show up before they become life-threatening. He wants us near the hospital in case something happens.

The knee pain is pretty much gone and when Dr R palpated the area he said that the tumor was perceptibly smaller. The discomfort that had radiated from Pete's shoulder blade around to his chest has resolved, leaving only the pain near the scapula, but unfortunately it's still pretty intense at times. Tomorrow Pete has an appointment with O to see if she can use acupuncture to try to alleviate some of that pain.

After the doctor left I mentioned to Pete that maybe he should put a call in to the social worker to see if he could find out where we stand with respect to getting into Hope Lodge. Within minutes of our conversation, B, the social worker, walked in and asked if we'd heard from them. When we said we had not, he said he'd look into it and get back to us. Since Pete hadn't had time to call him I'm guessing that Dr R had probably had A or D put in a call to him.

Before we left the hotel Pete had an Ensure, but once he was settled in with the iv I asked if he'd like anything to eat. Since his answer was affirmative I walked over to Chelsea Market and got a couple of bagels, cream cheese and large herbal teas for us.

Pete's drip finished up a bit earlier than usual, probably because they didn't have to mess around trying to draw blood the way they had done most of the other mornings. He was just about the same weight as yesterday, so D told him they'd send him home without the big iv bag of fluid and see how it goes.

We were out of the hospital and on the road before 1, and at this point, we still haven't heard anything from either B or HL. I'm keeping my fingers crossed that there will be a room available for us soon, especially after hearing what Dr R said this morning about what needs to be done post-chemo.

Day 6 of 10 - September 12, 2010

Pete woke this morning in a much improved frame of mind. He drank an Ensure and even ate a half of a banana. He took his bicarbonate of soda and potassium and was much more animated than yesterday. We headed into the city and today he felt strong enough to walk to the hospital from the parking garage.

Today's nurse was A2. His weight was down about a pound from yesterday despite having the iv fluids, so it was determined that he'd be sent home with another bag of fluid. A2 lucked out, or maybe I should say Pete was the one who lucked out, because there was an immediate blood return today, so he didn't get stuck. Blood results were still good, but his bicarb level was borderline low, despite the fact that he gets a bicarb drip during the hydration and has faithfully been taking the prescribed 4 tabs 4 times a day, along with the potassium.

After he was settled, I walked over to Chelsea Market and brought us both herbal tea and an oatmeal cookie, which we split. A while later I made a second trip over there and this time came back with 3 bagels and butter. There's something about a New York bagel that makes it unique, both its texture and taste. Theories abound that it's got something to do with the water, the atmosphere, or some special ingredient, but until you've had one, you don't know what you're missing. Anyway, Pete munched on one and almost finished the whole thing.

When his iv finished, A2 flushed the port and tried for a blood return and, true to it's contrary nature, the port refused to give it up. Apparently, once was enough, so she gave up and hooked Pete up to the infusion pump and the iv fluid pump and sent us on our way.

Once back at the hotel, Pete decided he was finally in the mood to tackle the chicken soup I had gotten him the other evening so I heated that up for him along with another bagel with butter.

This evening Bruce and my sister drove up and brought some more Ensure and a sweatshirt for Pete as it turned quite cool today though tomorrow is supposed to be warmer.

All in all, today was a much better day than the past 2 were.

Day 5 of 10 - September 11, 2010

Today is Saturday, so we figured there wouldn't be as much traffic headed into the city as there is on a week day. It wasn't until we were on the road that I realized that today was 9/11 and there might actually be a lot of traffic due to it being the anniversary of the attack. Fortunately, the traffic was light and the 16 mile trip that took us around an hour or more the other days was cut in half.

Recording Pete's vitals is always the first thing they do, so he stepped on the scale and it seems he dropped a significant amount of weight in 24 hrs, about 8 lbs. He hadn't really eaten anything in the last 48 hrs; a bottle of Ensure and a banana for breakfast 2 mornings ago, and a handful of pretzels that evening. Food, though was not the issue. Yesterday, after we got home, he had flopped on the bed and dozed off an on. I tried numerous times to get him to drink, but he'd only take a few swallows and I was a bit worried that it just wasn't enough. Today proved it wasn't. He was on his way to being dehydrated.

Today his nurse was F, and just like the past 2 mornings, she was faced with his uncooperative port that gave no blood return. She hooked him up to the iv, got that running, bypassed his arm because it "looked pretty beat up" as she described it. She tried unsucessfully to get the vein on the back of his hand, but that one "ran away and hid", as they so often do these days. She called in the other nurse on duty today (it was very quiet in the chemo ward today as most patients are scheduled for weekdays), who was able to get the blood without too much trying.

Pete's blood work continues to look pretty good, considering all the chemo he's been getting. He was, however, showing early signs of dehydration, so we were told that he would be going home with a bolus of iv fluids that would last until we returned tomorrow.

He slept, or at least drifted in and out of sleep, most of the time. After we had been there about 2 hrs I walked over to Chelsea Market and brought us each a nice, big cup of herbal tea. Today was another infusion of Emend to help thwart nausea, given during the last 20 minutes of the iv drip. F hooked up the continuous infusion pump that delivers the Ifosfomide along with a pump and what looks like about a gallon of iv fluid all packed up what looks pretty much like an ordinary back pack. Pete is a bit shaky on his feet, so she instructed me to get the car (it's about a block away in the parking garage) and pull it into the drop-off/pick-up area right outside the entrance. By the time I navigated my way through the one-way streets, Pete was waiting on the steps.

We swung by the hotel; Pete stayed in the car and I ran in, grabbed his meds and a few other things, and we headed for home. He said he wanted to go home for a while this afternoon, so that's where we are right now. I'm doing some laundry, he's dozing off and on in his own bed, surrounded with 1, 2 or 3 dogs. His father came over and visited with him for a while, but Pete wasn't really in shape to do much talking or listening.

We'll be heading back to the hotel in a bit. Tomorrow we'll do it all over again, but he'll be half way through the treatment. Then we get to experience, once again, what is known as "scanxiety" - the anxiety that builds as the next scan draws near.

Day 4 of 10 - September 10, 2010

Another morning with no blood return from the port. D was off today, so Pete's nurse was AO. She tried several "tricks", but his port again refused to give up the red stuff, so she hooked up the iv and drew the blood from his arm.

The counselor Pete was scheduled to speak with came in a short time later. After introductions, I left them alone to chat and walked to "The High Line" and then along Hudson River Park, and finally through Chelsea Market before I returned to the hospital.

When AO came in at the end of the session and unhooked Pete from the iv, she tried once again to get a blood return. After a few more attempts, she had Pete turn onto his left side and suddenly there it was, nice red blood filling the tube. Hopefully, when they try for it tomorrow, it will work.

It was early afternoon when we returned to the hotel. Pete was exhausted and just flopped on the bed and that's pretty much where he has been since then.

Day 3 of 10 - September 9, 2010

Things went fairly smoothly today. It seemed there were a few more traffic tie-ups on the way in this morning so we'll have to adjust our "leave-time" so that we have a little breathing room between arrival and appointment times.

Yesterday, Pete was instructed to go directly to the chemo suite instead of stopping in at the labs for blood work. That way they could use his port to draw blood instead of accessing a vein, pricking him needlessly. A small glitch was Pete's port. Every so often it gets temperamental and refuses to give a blood return, and that's what it decided to do today. D tried a few "tricks" to no avail which included pushing in a little Heparin. She decided to just start the fluid and let that run for a few minutes and then try to draw blood as this sometimes works at getting the port to cooperate.

True to it's fickle nature, when D again tried to get a blood return on the port it wasn't successful, so Pete wound up getting "stuck", quite literally, for that important blood work sample.

Along with the Ifosfomide, Pete was also infused with Emend today. D explained that they included the Emend on days 1, 3 and 5 according to this particular protocol. We also learned today that the hospital would be open on Sunday so there would be no disruption to Pete's daily dose of fluids and blood testing.

I almost forgot a little incident that happened yesterday that was a bit amusing. One of the first things they do when Pete arrives is to record his vitals: blood pressure, temp, weight, etc. Yesterday they also recorded his height. Now keep in mind that Pete is quite tall, and envision the GEICO commercial where the man asks, "Is Too-Tall-Jones really too tall?" As life imitates art, if you can call a TV commercial art, Pete stepped onto the scale and the nurse raised the pole to determine his height and wound up with the rod in her hand. She had to hold the two ends together because his height was just where the poles joined.

Outside of the hospital, Pete has a number of instructions he must follow carefully. Keeping well hydrated requires him to drink, drink, drink, so he keeps a water bottle close at hand and drinks often. He also has to take sodium bicarbonate 4 times each day to replenish electrolytes. Potassium is another addition to his regimen, also to maintain the electrolyte levels.

Day 2 of 10 - September 8, 2010

 Today Pete's stay at the Comprehensive Cancer Center lasted a little over 4 hours. He was hydrated and his continuous pump was refilled with enough chemo to last until tomorrow when we return again at 9 AM.

I mentioned that during yesterday's treatment Pete was visited by several people representing some of the services that are provided to the patients. Today, B, the social worker came in to talk with Pete and I. He gave us a number of valuable pieces of information, offers of assistance in filling out forms and contacting agencies. He submitted an application for us to stay at Hope Lodge during these extended treatments. The most MSKCC did was give us a list of NYC hotels that were willing to provide "discounted" rates to cancer patients undergoing treatments and/or their families. When I checked into those rates, the cost per night was still in the area of $200 or more.

B also suggested that Pete speak with one of the other counselors on staff to discuss any concerns or questions that Pete may have about dealing with the issues his cancer diagnosis has raised.

O returned as promised and set up an appointment for Pete to have Reiki therapy next week and said she would speak with the doctor about the possibility of acupuncture for pain management. If his pain persists, the pain management doctor will come in to assess Pete's situation and perhaps make some changes to his current pain medications.

I don't know what experiences other patients/families have had with cancer treatment centers, but until now, we had only been to MSKCC. During our many visits to Memorial since Pete's initial diagnosis in 2008 we encountered wonderful nurses, physicians and staff, and I acknowledged that in earlier posts to this blog. Everyone we dealt with there was pleasant and professional, but I always felt a bit isolated and the atmosphere was that of a sterile hospital.

When Pete began his second type of chemo we went to a small, private practice medical oncology center closer to our home for his infusions. The atmosphere there is much more "homey" and personal, but all they provide is chemotherapy.

When he went to the local hospital for his craniotomy and tomotherapy the social worker came out to talk to us and gave us literature to read and explained some of the services the hospital could provide in terms of support.

Dr R had most recently been at St Vincent's, but that hospital went bankrupt, closing its doors this past spring, many of its buildings and services subsequently acquired by Beth Israel. Now, under Dr R's care, we've learned what a Comprehensive Cancer Center really is, or should be. We are not left on our own to figure out what may or may not be available. We are not expected to know what questions to ask or who we should ask to see.

A Comprehensive Cancer Center. In Dr R's biography it states that "He is also known for changing the way medical oncology is practiced by developing the first truly comprehensive outpatient cancer treatment center that functions 24 hours a day, seven days a week." How fortunate we are to have found Dr R and all the wonderful resources that are being presented to us. How unfortunate that the 24/7 care is no longer available because the hospital that provided it went bankrupt.

Day 1 - A Long Day - September 7, 2010

Yesterday was a long day. We were up early and left the hotel about 6:45 AM arriving at the hospital  a few minutes past his 7:30 appointment time, so I dropped him off at the entrance and continued to the parking garage on the next block. As I walked through the doors into the waiting room he was just emerging from the lab area and we were directed to the chemo suite from there.

We were met by D, the chemo nurse who would be taking care of him during his treatments. She told us that she has been working with Dr R and his physician assistant, A, for 12 years and assured us that we were in the best of hands. It was quite evident that she had a tremendous amount of respect for the man and that the work she does is rewarding and fulfilling.

I don't recall the chronology of the events and there was a lot that went on, but I'll try to recount some of the highlights. A was the first to come in to talk with us. She asked asked questions about how Pete was feeling, how much discomfort he was having and talked to us, describing again what these treatments involved.

When D came in she handed both Pete and I two pieces of paper, copies of Pete's blood work from the morning. Several items were underlined, starred or otherwise noted. D proceeded to go through each of them, explaining what the numbers indicated, how they would most likely change during the course of treatment, what the doctor would be looking at and why, each time Pete comes in. She also told us that the white blood cell count would most likely drop to near zero, that another number was extremely critical as it is an indication of dehydration, another indicated liver function, etc.

As D began to prep Pete for the infusion, she explained what she was doing each step of the way. It was not just a cold "these are the facts" lecture, but a vibrant, warm tutalage with ample opportunity for us to ask questions. She included short anecdotes of experiences from the care of other patients, putting both Pete and I more at ease.

One of those stories came on the heels of telling us about the possible side-effects of having hallucinations and strange dreams. She assured us that they were not like those frightening drug or alchohol withdrawals that are portrayed on tv, but rather curious and odd, illustrating it by recounting a story about one patient who commented about the lion that kept passing by the door to his room. The man was a bit perturbed because he said "hello" to the lion each time it passed but the lion just looked in and never responded. He wasn't frightened by the lion, it seemed to be just a curiosity.

Pete was also visited by the pharmacist, L, who brought in an infusion pump. He explained to us how it would be set up, went through a demonstration of changing the batteries and had Pete actually do a hands-on dry run himself. He chatted comfortably with us and we learned that he and his wife have a home in Lavalette, a shore town a bit south of where we live.

O, the nurse/manager of the Complementary Therapy Program, came in briefly to introduce herself, and promised to stop in tomorrow to possibly set up some adjuvent therapy. The nutritionist also came in to speak with Pete but I didn't meet her as I was walking along the Hudson River when she visited.

Dr R stopped in several times during the day. During his last visit he cautioned us that in his experience many patients undergoing this particular treatment experienced a very difficult time somewhere around the fifth day. Once they made it though that low point, though, they began to rebound.

I started this entry around 4:30 AM Wednesday morning and it's now 11. We've been at the hospital since 9, but I haven't been able to finish it up satisfactorily. I'm going to post it now. Lots has happened since we arrived, all of it good, but there have been many disruptions to my train of thought. I'll add more later.

Pull No Punches - September 2, 2010

Pete's father drove us into the city to meet with Dr R this morning. I usually am the fretful mom and Pete often gets annoyed when I ask "did you remember...?" when we're about to leave for an appointment, so this morning I didn't ask any annoying questions. Too bad I didn't. We were about 1/3 of the way when I commented that I hoped the slides from MSKCC had been sent to Dr R. That prompted Pete to grab his backpack and find that he had apparently not packed the slides of his brain tumor that he had picked up from MMC the other day. I just crossed my fingers that Sloan-Kettering would come through.

We were early for the appointment. Pete took the CDs of his 3 scans to the radiology department to be uploaded into their system so Dr R could look at them in his office. Within minutes he was called in to have his blood drawn, and shortly after that was completed we were in Dr R's office. The slides from MSKCC had not arrived, so Dr R pulled up the new MRI scans and pointed out and explained what he saw on these latest tests.

There are 2 people who work under Dr R who seem to be his left and right hands. "A" is his physician assistant and "L" is his office assistant. We were about 30 minutes into the appointment when L announced that the slides had just arrived, promptly brought them in and placed the package in front of him. He immediately took out the slides and began viewing them through the microscope on his desk. After he found the giant cells that were not apparent in the slides from the core needle biopsy and reading the full report included in the package he said that he agreed with the diagnosis presented by MSKCC of MFH (Malignant Fibrous Histiocytoma) though he identified it more specifically according to the World Health Organization guidelines as a "high grade undifferentiated pleomorphic sarcoma" (HGUPS). He also said that after viewing the slides and reading that the primary tumor was subcutaneous, he agreed with Sloan-Kettering's assessment that post-surgical radiation and/or chemo were not indicated. Everything pointed to this sarcoma as being one that is not expected to metastasize.

He outlined the plan of attack, an ambitious approach that would begin with an attempt to reverse, or at the very least, halt the growth of the tumors using chemo. He discussed the pros and cons of using the single agent Ifosfamide vs a "chemo cocktail" of Ifosfamide and Platinol. His final decision was to begin with the Ifosfomide alone, holding the Platinol as a possible addition later.

After allowing an appropriate period (2-3 weeks), scans would be repeated to assess effectiveness. Depending on response, the next step would be IMRT radiation to further shrink the tumors, particularly the large one in his lung and the two in his legs. Surgery would be the final step in this three pronged assault.

Had it not been for the impending Labor Day holiday weekend, during which the hospital would be closed, combined with the amount of time since Pete's last chemo infusion of the drug DTIC and its known blood count nadir, he probably would have begun the program today. Dr R decided, because of his concerns about these two factors, that it would be prudent to wait and scheduled Pete to begin the infusion 7:30 AM Tuesday, September 7.

As he described it, Pete will be hooked to a pump that will continuously infuse high-dose Ifosfomide over a period of a week to ten days, but it may turn into several weeks. During that time he will need to go to the hospital frequently for hydration, blood tests and to have the chemo solution refilled. He recommended that we consider staying in or close to the city for easier access to the hospital as this regimen is quite rigorous and dehydration is a major concern that can quickly turn life-threatening. More than once he stressed that this is a very aggressive and potentially dangerous treatment, necessitated by what we are learning is apparently the highly kinetic and atypical nature of Pete's cancer.

After we got home we made reservations at an extended stay hotel near Newark Airport about 15 miles from the hospital, a trip that is one exit up the NJ Tpk, through the Holland Tunnel and traverses 2 miles of lower Manhattan streets.

Dr R strikes me as an extremely caring, accomplished and dedicated physician who treats his patients with respect and humanity. The closing of St. Vincents Cancer Center clearly saddened him because that facility was open 24/7, something he feels very strongly is important for proper care of cancer patients. His current association with Beth Israel will end soon because he does not feel comfortable with their practice of limited daytime hours and being closed on weekends.  He will be moving to NYU as of October 1, where the hours, though not as generous as St. Vincent's, are more accommodating to patients than those at Beth Israel.

I appreciate that Dr R pulls no punches and tells it like it is. One of the things he said in the course of the appointment, though, gave me pause; something about Pete having "nine toes in the grave, so we have to grab the tenth toe and pull him back", a metaphor that I'm still trying to accurately interpret. I'm going with the fact that there are a whole lot more body parts and it's like getting your toes wet first, before you slowly wade deeper and eventually get up the nerve to go swimming.

Worrisome Times - September 1, 2010

Early Tuesday morning, perhaps because of all the activity of carrying and lifting the day before, Pete mentioned that his left knee was bothering him. The MRI of his right leg was scheduled for a little later in the morning, and there was the appointment with Dr W later in the afternoon. Before going to that appointment, Pete stopped by the hospital where his craniotomy had been performed to pick up the slides of that tumor to bring with us on Thursday.

Dr W was concerned about these new developments, the growths in both legs. Pete filled him in on the appointment with Dr R, and that Dr R would not finalize a plan until he had seen the slides of the primary tumor. Dr W suggested making a call to Dr W2, the radiology oncologist, who had directed the tomotherapy following the surgery that removed the brain met, in case Dr R's plan for radiation might be done local to us.

Wednesday morning, Pete awakened with a very red, swollen and painful left knee, so much so that it was difficult for him to bend it even 45 degrees. He put in a call to Dr R, who advised him to stay off of it as much as possible and to call back if it worsened. Pete asked if they had received the slides from MSKCC and the answer was "no", so Pete put a call in to see what the delay was. They told him they had to cut new slices and that they would "overnight" them to Dr R so that he would have them when we went in to the appointment Thursday.

Sometime during the course of the day, Pete looked at the scan of his right leg and found the mass located in his calf. As the day went on, the swelling, redness and pain he had in his left knee began to dissipate, suggesting to both of us that perhaps it was a reaction to Monday's exertion.

To learn that there are two additional tumors is devastating; to know that they were identified before they could progress any farther is something for which we are very thankful. The best news in all of this is that the MRI of the brain showed no new lesions.