Seth's Info

Seth is shedding tubes -- two were removed today, including the NG drain (the one in his nose). He successfully swallowed a very nasty-tasting contrast liquid for a swallowing study, and after some initial reactionary gagging, he went on to pass the test with flying colors. His surgeon was standing by and was happy to see that Seth is healing well internally. He will be allowed to try drinking some water tomorrow, and slowly progress from there. I have seen Seth go through a lot these past 6 months, but I am really blown away by his determination and progress after this surgery. I know that his ultimate goal is to get the heck out of the hospital as soon as he possibly can, and if that means he needs to walk laps around the floor, he'll do it!

Seth continues to improve each day and has been moved to a room now (309B). The docs seem pleased with his progress so far. He is getting tube feedings and being weaned off the IV nutrition. He's also alert a lot more, reading the newspaper, playing solitaire on the computer, etc. I am brushing up on my interpretive skills, as Seth's new throat is irritated by the NG tube and he is using his voice sparingly and relying on hand motions quite a bit. I have to admit that spending half my life with Seth has not translated into mind-reading skills. I'll blame it on Seth's lack of experience in playing charades.

Seth continues to do well with his recovery from surgery. He sat in a chair and watched football for an extended period today and, much to the delight of his nurse and his own painful displeasure, he has been productively coughing now and then. This is very painful to Seth's abdominal incision, but very good for clearing out his lungs and preventing pneumonia. Prior to surgery, Seth made the mistake of making me promise to ensure that he does his breathing exercises after surgery, so I have been the recipient of an annoyed glance a time or two today...but it's worth it. If he continues this progress, he should be able to leave ICU at the end of the weekend and move to a regular room. I'll keep you posted!

Seth's surgery went as planned, and word is that he behaved himself throughout the surgery. He is in ICU now and will likely remain here through the weekend. Thank you for your prayers and please keep them coming. His recovery is likely to be rockier than in the past. He has been talking off and on to his mother and me, and his color is good. So far, we haven't heard him cough once, so we are hoping that this remains the case! With love, Jenny

Hi everyone. This is my first post to Seth's blog, and I will try to post after Seth's surgery tomorrow and let everyone know how he's doing.

We have had another crazy week, as Seth likes to say. Seth is now scheduled for surgery tomorrow (Friday) to permanently bypass his esophagus.

Seth’s esophagus has been severely damaged over the last 5 months from the initial high dose of radiation and the repeated administration of Adriamycin (one of the chemo drugs he had for the first 5 chemo cycles). After endoscopic examination on Wednesday, the surgeon found two major problems. First, a fluid-filled sinus has pushed out from the esophagus wall to about the size of a plum (where the wall had weakened). This alone would warrant removal of the esophagus, and is a life-threatening event in itself. Second, a fistula, or tunnel, has developed between the espophagus and the left branch of the windpipe. This is a more serious condition and complicates matters because the risk of infecting the lungs is very high. It explains very well his inability to swallow anything, and his persistent cough etc. The doctors were somewhat amazed that his lungs were in the reasonably good shape that they are. Frankly, I think it is miraculous that in his immunocompromised state he has not developed anything serious, and is walking around, talking, and not in pain.

Were his esophagus in better shape, it would be completely removed and the stomach stretched up to the throat to create a new connection to the GI tract. Because of the fistula, the surgeons want to seal off the esophagus and leave it in place to minimize the risk of infection in the lungs. This is “sub optimal” but should get the job done. The stomach will still be pulled up to the throat, bypassing the esophagus, and attached to the back of the throat. By not removing the esophagus, they will not have to disrupt the chest cavity at all, and will minimize the risk of spreading infection into the airway. The long term effects essentially amount to a life style change in the way Seth will eat. Small, frequent meals, non acidic food, etc will be the norm.

Additionally, a feeding tube, called a J-tube, will be inserted to allow for direct feeding until Seth can eat 100% through his mouth. This gives us a lot of flexibility in adding more complex foods to the diet while still maintaining a high calorie diet. Recovery in the hospital will probably be 10-12 days, but it is always hard to predict these things. This is a major surgery with the biggest risk being a severe infection developing in the lungs or interior cavities.

The good news is that Fox Chase treats a lot of esophageal cancer. Although Seth's problem in the esophagus is not a malignancy, he is in essence getting the kind of operation someone with esophageal cancer would have. Seth's surgeon is heavily experienced and published, and we have the utmost confidence in his judgement and skill. I would guess that he's around 60, so he's been taking out esophaguses for a long time. This type of surgery is technically complex, so we are relieved that we are already at the right place and don't have to travel even farther from home to have the "right" surgeon take care of Seth.

Needless to say, we have had to process a lot over the past week, and this whole long episode with Seth's esophagus has been a major setback to say the least. Seth is looking and feeling remarkably well right now. He has lost a significant amount of weight over the last month b/c of his difficulty, and eventual inability to swallow. I am amazed at how Seth's body has compensated for this major defect in his esophagus and trachea.

Seth will certainly be out of commission for a while, but I know that he would definitely like to get some mail while he is here. The address here is:

Seth Edmondson (patient)
Fox Chase Cancer Center
333 Cottman Ave
Philadelphia, PA 19111

I want to make a hasty apology to our friends and family. Because these last few weeks have been so incredibly busy and hectic, we have failed to acknowlege packages, emails, and phone messages. I know that you all understand, but I want you to realize how much your love, generosity and concern mean to us. Thank you!

Please keep Seth in your thoughts and prayers. My beautiful husband continues to amaze me with his strength and grace throughout this ordeal. I know that we both continue to draw our strength from all of you.

With love,
Jenny

After some digging around, we found out how to get insurance to cover home nursing visits. Today we had a very nice local nurse come and give me a liter of saline via my port, and I'll get 3 more liters over the next week (1 liter every other day). This has made a huge difference in the way I feel, as I was getting dehydrated and dragging. Feel like I should do this for any chemo treatment. Jenny even can change the IV bag on the portable pump. It's very easy to do, actually. The nurse has to access the port, and leaves the tubing for the week.

I still have a hard time swallowing without coughing, but I've got time to figure it out and let the cough heal. My brother has left, but now my Dad is here through the weekend to helpout. That's all for now, C/T scan down in Altoona tomorrow, although we probably won't hear the results til Monday.

Seth

A quick update. I am back at home but not out of the woods. My ifosfamide treatment resulted in some pretty severe “mental confusion” symptoms. This is a common effect from this drug – I didn’t know the date, couldn’t, answer simple questions or explain simple concepts. The effects have largely subsided but I ended getting about 5/7th of the dose planned. It was a very scary experience for me, and I felt like I had Alzheimer's.

I am not tackling continued GI tract issues, largely in the form of trouble swallowing and a wicked cough. I am trying hard to stave of dehydration along with Jenny. I am getting a C/T scan done this week to check my chest, but I am hoping to avoid admission to the hospital.

Overall, it’s been very stressful and I am keep waiting for things to get better. All for now, please send emails vs phone calls please.

I’ve now been home from the hospital for a week and my recovery continues slowly. The cumulative effect has been good, though, and I am feeling much better than I was a week ago. It has now been 6 months since we discovered my recurrence. It is hard to put those 6 months in perspective, but I feel proud of the way our family has handled the challenges. The last month has been very demanding physically and emotionally, and I remain hopeful that we will get some good news soon.

Jenny started work this week at PSU and is confident that this job is going to be well suited for her. Getting 3 kids out the door in the morning (and herself to work) has been a big adjustment, as has being home alone all day for me. Nathan is enjoying his preschool and Spencer and Jack are finding Kindergarten and 2nd grade to be a blast.

I am heading down to Fox Chase tomorrow morning (Friday) for my next 4-day treatment. I’m not anxious to get back into a hospital gown and bed, but as long as I have energy and not much pain I’ll make the best of it. There will be some good football to watch over the weekend. My brother Rob is heading out to keep me company over the stay and drive me back to State College next Tuesday.

Jenny and I continue to thank you for your prayers, good wishes, emails, phone calls, and support – it really makes a difference for us.

Take care,
Seth

I am happy to report that I am back in St College after 10 days in the hospital. I never did end up getting chemotherapy, my body just wasn’t up for it. I still have an ulcer, they heal very slowly. I am getting over my pneumonia, and that is what kept me in the hospital for so long. It’s hard to get over the coughing and they want to make sure that your lungs are healing. I also had two very trying roommates while at the hospital that made it very difficult to sleep well. I am now eating and drinking OK, just trying not to overdo it. My energy level is slowly returning as well.

I will be heading back to Fox Chase late next week or Monday the 11th to get admitted for chemotherapy. I am really hoping to be doing better by then so that I can handle things OK. It looks like we will be going to an ifosfamide-only treatment, still 3 and half days in length.

I am woefully behind on returning emails etc. Please forgive me for now; I just don’t have the energy to write much. I am enjoying the fact that college football is now underway; there are lots of people in town for the Penn State game today (despite the heavy rain).

Take care, I’ll post in a few days and let you know how I am feeling.

Seth