Thursday, July 30, 2009

What's Up With the Doc 67? - Back from Texas

We're baaaaaaack! The trip to Texas was wonderful. We arrived in Houston on Friday, drove to our friends' house and spent the rest of Friday being pampered with great food, drink and conversation. Things actually cooled down a bit for us, but we mostly stayed inside anyway. We left at the crack of dawn on Sunday to go to Ian's white coat ceremony. We underestimated just how many people wanted to be part of this so we wound up in overflow seating, but they were great about letting the family come in while their loved one was actually being "coated" to take pictures.

The speeches weren't too boring and it was an emotional day for us all. One of my medical school classmates just recently became the Chancellor for the entire University of Texas system and he was at the ceremony. It was nice to be able to introduce Ian and entrust his education to a friend. We had good Texas barbecue for lunch and then Mexican food for dinner with Ian, Resa, Macy and Isaac. Sunday morning Robert got up at the crack of dawn to take Isaac to the airport then came back to collect me and we headed North. We had lunch with Robert's aunt at the Town Cafe in Centerville and then landed on a friend's doorstep in Dallas for more good food, drink and conversation. We slept in Tuesday then split up and I had lunch with my friend while Robert knocked around on his own. Tuesday evening we met old friends from the SMU chemistry faculty at Celebration for our traditional Dallas confab. Coming home yesterday presented no problems and I used the rest of the afternoon to rest and recuperate. I was back at work first thing this morning and am looking forward to my last clinical shift tomorrow with a very busy schedule.

As far as cancer goes, I've tried experimenting the last few days and taking oxycodone whenever I feel any kind of not good - pain or nausea or extra weak or whatever - and it seems to be working. I've determined that my inability to stand or walk for any significant period of time is actually due to low back pain which pretty quickly brings its friends nausea and lightheadedness into play. Even when my pain is completely controlled at rest or sitting, standing and walking trigger it like crazy. I've been keeping track and will talk to my oncologist and Hospice next week about where to go with pain management so we can get rid of the ups and downs and try to keep things on a more even keel. My appetite is still decent, I haven't lost any weight, I'm getting enough sleep and I'm not drowsy or sleepy during the day. So things are pretty good!

I finished the last of Lindsay's quilt squares yesterday so move on to the trimming and assembling stage and then I just have to applique the border and that one is done. I have Emma's fabric and pattern set to go. Hannah is chomping at the bit to choose hers. Speaking of chomping at the bit, I went with Hannah today to get school supplies! She can't wait to get started on her senior year. She's still volunteering at the hospital and working two jobs. Classes start four weeks from today and volleyball four weeks from Saturday. Philip is in Illinois visiting old friends and old haunts. Emma is back in Colorado and thoroughly sick of moving. Lindsay is coming up Saturday for some math therapy before she takes the GRE.

Robert has started the hunt for stadium seats so I can sit comfortably on the bleachers for volleyball, impatiens are blooming like crazy and the weather is still weird - cooler than usual and whenever it warms up it rains. The outside of the house is all painted and Robert is making his way through the inside. Life is still busy and happy and our eyes are still on the future horizon.

Until the National Free to Breathe Walk is past (November) I'm going to end each email with a reminder to contribute to the lung cancer cause in my name if you are able and the link to the Team Sunnyside fundraising page - so here it is:

Next update after I see the oncologist next week.


Thursday, July 23, 2009

What's Up With the Doc 66? - Saying Farewell to One Piece of My Identity

It's been a busy week and there's much to catch up on, but the sentinel event of the week has to do with my work. My supervisor asked for a meeting to let me know that hospital administration has decided that being on long-acting narcotics (a fact which I voluntarily declared to them) constitutes a liability risk that they are not willing to undertake and I am being taken off the clinical schedule effective August 1st. This doesn't affect my employment, pay or benefits, I just won't be seeing patients any more. If you had asked me beforehand, I probably would have expected to be thrilled with this turn of events. In actuality, it turns out laying hands on people is a pretty big thing to me and I'm finding myself doing a bit of grieving. Which is probably good - baby steps and all. I'll be losing lots more little pieces of my identity as this process goes on and this is probably a pretty good one to cut my teeth on. So yesterday was my second to last clinical shift ever.

Physically, I'm feeling pretty good. The gastrointestinal garbage from the Navelbine has resolved. I no longer have the bloating and epigastric pain, loss of appetite or early satiety. I'm still trying to find the magic schedule of stool softeners and laxatives that will keep me "unbound" while on narcotics without unleashing the opposite of bound up. My sleep has been a little less restful this week so I spoke to Hospice Tuesday, increased my bedtime Ativan from .5 to 1 mg and had a lovely night's sleep. I am back on regularly scheduled Ibuprofen doses because when I came off of it I was pretty miserable with different pains at different times and I prefer to keep the narcotic doses as low as possible. Once I'd been back on the Ibuprofen for a couple of days I can say I am occasionally completely pain-free, more often I have mild neck and/or low back pain and very rarely have enough pain (usually neck, usually in the middle of the night) to take a "rescue" oxycodone. Hospice is planning to talk to my oncologist about switching me from oxycontin to methadone because you can go pretty high on the dose of methadone without running into the sedative side effects. We'll leave that until after I get back from Texas, because things are very tolerable on the pain control side at this point.

So the improvement in my symptoms allowed me to do the crazy driving schedule last week. Wednesday evening Emma and I drove to my cousin's house in PA, where we enjoyed a late evening kitchen chat before we hit the sack. We left early the next morning and drove to Kennett Square, where we got Emma situated in the guest house, bought some groceries, had some breakfast and then got her hooked up with the high risk emergency staff at the horse hospital. I hopped in the car shortly after noon to head home and ran into some yucky I-95 traffic, making me late for my hospice admission appointment, but Robert took care of things until I got there. I worked a clinical shift on Friday, did laundry and watched a movie with Philip on Saturday and then went to bed early. Sunday morning I took a 5 am train to Boston, took a cab from the train station to Boston College, where I picked up Hannah and her car. We drove from Boston to Bethlehem, PA and got her settled (a little bit late because we got lost in Bethlehem - sorry Hannah and coach) in the volleyball camp and then I turned around and drove her car home and made it in time for dinner! I was perfectly comfortable with all the driving and really enjoyed the time with both girls. Their father picked them both up yesterday and brought them home.

My online friends have started a team for the national Free to Breathe Walk in my honor. It is called Team Sunnyside (my online moniker for many years) and I will try to see if I can get a widget to put on the blog in case anyone wants to donate to the cause.

Today is my last day with Emma and we will pack as much into it as we can. Robert and I leave for Texas early Friday. We will be staying with friends in Houston Friday and Saturday and then head to San Antonio for Ian's white coat ceremony on Sunday. Isaac will also be there so we are hanging around on Sunday to enjoy the kids. Ian starts orientation in earnest early Monday morning so we'll take Isaac to the airport before we head North. After stopping to see Robert's aunt we'll head for Dallas where we have nothing to do but visit with friends before we head home on Wednesday.

So, all in all, a very good week as far as quality of life goes. That's pretty much all that matters to me at this point, so a very good week indeed. Next report after we get back from Texas!


Wednesday, July 15, 2009

What's Up With the Doc 65? - End of Active Treatment?

Well, it's been a week. To make a long story short, last week's Navelbine just kicked my butt. I felt awful Thursday, Friday, Sunday and Monday. Saturday I got some sort of weird reprieve that let me play Mario Brothers on Lindsay and Jacob's Wii when they came up for a visit. Again, I find it hard to describe. Gastrointestinal symptoms seem to be at the center of it all with epigastric pain, bloating, cramping, nausea, early satiety, and loss of appetite. I also had a tremendous increase in my weakness and shortness of breath with even the slightest exertion. And, again, I just could not get comfortable. I called my oncologist on Monday and cancelled yesterday's and next week's Navelbine. I have an appointment on August 4th, after we get back from Texas, for Zometa and Navelbine and we'll go talk then, but at this point I'm not inclined to accept any more active treatment for this cancer. I presume that these symptoms are from the Navelbine and it's simply not worth it for a treatment that is most likely not to do anything for me and at best might extend my survival by a month or so. If these symptoms were from the cancer, then the Navelbine wouldn't be working anyway so why keep taking it? But every day I feel a little better, so it's pretty clear Navelbine is the culprit.

This is a difficult decision. To some it feels like giving up. To some it feels like accelerating the inevitable. To me it feels like claiming the last vestiges of feeling less than awful that I can claim. Because this decision is difficult and is processed in different ways by the people I love I also requested a hospice referral and the case manager will come out to meet with Robert and me tomorrow afternoon. South central Connecticut is actually the birthplace of hospice in America and they have a very strong program here. They have a program called CanSupport for people still on active treatment and that's what we're enrolling in at this time. But just the term hospice is a loaded one and I feel for all of you who have to process that.

Meanwhile, life goes on and is as busy as ever. Tonight, after work, Emma and I are driving to my cousin's house in Pennsylvania to crash before I deliver her to New Bolton Center early Thursday. I'll drive back in a leisurely fashion and see the hospice case manager late tomorrow afternoon. I have another clinical shift on Friday and a leisurely day (except for laundry!) on Saturday then Sunday I take an early train to Boston to pick Hannah up from volleyball camp at Boston College and drive her to another volleyball camp at Lehigh University. Then home, clinical shifts Monday and Wednesday next week and then we're off to Texas on Friday.

I start the last square of Lindsay's quilt today and should get it put together over the next couple of weeks, at which point I'll start Emma's. The outside of the house should be all painted by the end of this week and Robert is plugging away at the inside as time permits. The impatiens my friend planted last month are growing and blooming (I told you so!) and it is still very lush in Connecticut. It has been a lovely week, weather-wise, not preparing me in any way for Texas in July.

Think good thoughts to hurry away the last of the nasty Navelbine effects so I can enjoy life for a while. Thank you all again for keeping me in your thoughts and prayers.

Thursday, July 9, 2009

What's up With the Doc 64? - Still Learning

Being a cancer patient continues to teach me new things as a physician. The general level of discomfort that I described last week just kept getting worse. As bad as the general feeling of ill ease was the unrelentingness of it all. I just could not get comfortable, no matter what I tried. This resulted in early doses of oxycontin on Thursday and Friday last week, which completely took away the feeling of unease. So Saturday I started taking the oxycontin twice a day and have felt remarkably better ever since. I spoke to my oncologist about it Tuesday and he feels that I was actually experiencing opiate withdrawal during the day because I was only taking oxycontin at night and that taking the oxycontin as it is intended to be dosed, twice a day, I have taken care of that little problem. I feel sort of stupid, but long acting narcotics have not been part of my practice since before oxycontin came on the market, so I’ll try to forgive myself. I have been so skittish about the narcotics that I caused myself more trouble than I needed by trying to keep the dose as small as possible. Now my pain is more than adequately controlled on the lowest possible dose of oxycontin and I am not taking scheduled Ibuprofen any more. This gives me the option of taking either Ibuprofen or short acting narcotics in small doses when I have breakthrough pain. So life on the pain front is very good.

The neck pain is slowly settling down since the radiosurgery (2 weeks ago today) and I am having less and less tingling in my right arm. I have had no more tingling or pain in the left leg since early last week so that turned out to be a curative MRI, I guess.

I saw the radiation oncologist Tuesday and was released from care until I need him for something. I saw the oncologist and had Zometa and Navelbine Tuesday and I’m feeling pretty darned good today. With the pain adequately controlled, my only troublesome symptom is the weakness and I’m learning to live with that. It doesn’t seem to be getting any worse. I’ve learned to rest after stairs, bedmaking, and to limit the amount of standing I do. I use a stool when I see patients during the time I am taking their history so I only have to stand up for the exam. I’ll get a wheelchair for the air travel part of my Texas trip later this month. I’m not having any trouble with daytime sleepiness, just weakness.

My gut problems seem to have resolved with Colace and Miralax every day - but we’ll see if it holds me through this dose of Navelbine. I did develop a sore throat from the radiosurgery late last week and it hurts to swallow but I’m still holding my own on eating with no weight loss.

All in all, this week is better than last. I’m busy planning fall school things with all of my children and enjoying the first real summer weather we’ve seen over this last weekend.

Wednesday, July 1, 2009

What's Up With the Doc 63? - A Little of This, A Little of That

After the radiosurgery on Thursday I had less neck pain and no arm tingling on Friday, which was a great big yay. Saturday we headed down I-95 to Bridgeport, took the Ferry to Port Jefferson and drove to my aunt and uncle's house for their 50th anniversary party. The party was a blast, the food was outstanding and it was a joy seeing all the cousins and their kids, but by three hours into it my neck was screaming. We bid our farewells and headed home, where I took an early dose of Oxycontin and slept with my rigid neck collar, which gave me some relief. I called the radiation oncology resident on call the next morning and started a little bit of steroids, figuring that I was experiencing some edema from the surgery. That has helped and I would say I'm almost back to my presurgery pain level and the arm tingling has settled down. I'm off steroids and using the collar as needed.

Friday I also experienced some very sharp pain in my left calf. I called the spine surgeon to ask him to look at my most recent CT scan to see if there was anything worrisome in the lumbosacral spine. Monday I developed tingling in the back of the left leg so he ordered an MRI, which was done yesterday. It doesn't look like there's anything (tumor or degenerative disc disease, both of which are present) pressing on spinal cord or nerve roots so I'll just take the scan with me when I see the radiation oncologist next week and see if we can figure out what's up.

I still get abdominal bloating and discomfort when I eat and have low grade nausea not completely controlled by the Reglan. It's finally starting to make my drive to and from work a bit challenging. For now I can handle it and plan to just keep an eye on it. I don't particularly want Robert to have to do four hours of driving every work day to get me to and from work. I'm also very weak. Two flights of stairs completely do me in. I'm not sure what all of that's about. I'm pretty sure the abdominal symptoms are from the Navelbine, which basically just puts the brakes on the entire GI tract. I'm hoping it's also causing the weakness and that should get a little better as this week off Navelbine progresses.

We had a lovely visit with our North Carolina friends on Sunday and are now fully engaged in the planning and anticipation for our Texas trip. I'm going to cave and ask for a wheelchair for the airport activities. I just don't think I can stand long enough to make it through a security line any more.

Emma finally started at the animal hospital yesterday. It was a very slow start but when she finally got hooked up with the "upstairs techs" apparently she had a good time. It's interesting for her to see how things run at a large, multivet practice in comparison to last summer when she worked for a very busy practice where everything was OK'd by the chief vet.

Hannah has started her hospital volunteering and Philip is at band camp. We'll go up for his end of camp concert and bring him home on Friday.

Next Tuesday I follow up with the radiation oncologist (I'm expecting that it will take a couple of weeks for the post surgical inflammation to settle down before I can really see what kind of benefit I might have derived from the surgery) followed by my oncologist for Zometa and Navelbine. Quilt work continues and I can't believe it's July already!