No Big Surprise

After many discussions with doctors, family, and friends and days of deliberation I have decided to postpone the surgery. This is definitely the best decision for me at this time. I feel fortunate that my doctors understand and agree that postponing, not canceling, is for the best. The plan is that I will do blood tests and CT scans every 6 weeks and I will contact them if at any time I start to feel symptoms – either bladder or nerve. We are taking some risks by postponing, the biggest of which is related to my leg. We need to closely monitor the proximity of the tumor to the femoral nerve to avoid permanent damage. This will be done with both the scans and by me – if I start to feel tingling or spasms I will let the docs know and we can arrange a surgery at that time. Hopefully this will be months or dare I say years, down the road. It was a huge relief to me to postpone this surgery as I was simply not mentally prepared. I want to take advantage of feeling pretty good and use this time to cross some things off my “to do” list. Thank you all for the prayers, well wishes, and good thoughts – they mean a lot to me.

We Interrupt this Broadcast….

To bring you the latest update. Where to begin? A lot has happened over the past few weeks - too much to try to explain, but it all lead to where I am today. Today is the first day of my disability leave when I am supposed to be getting everything in order for my surgery next week. Instead I am trying to decide if I should go ahead with the surgery as planned or postpone it for a while. I thought I was ready for this, ready to go ahead and lose my bladder- that’s what I supposedly spent the last 4 months preparing to do. And when the date was pushed to the end of July rather than early in the month as I had anticipated, I was disappointed and frustrated. But now that I have taken a step back and re-evaluated the situation, I am glad that all my doctors seem to take their vacations in July.

Last week I received a phone call from my urologist, Dr. Karian. He wanted to talk with me regarding his part of the surgery. We had not spoken since he did the biopsy in January and he was concerned. His exact words to me were that he did not want me to wake up and say “What did I just do??” This got me thinking and we decided it would be best if I were to come in and discuss this with him face to face, which we did the following morning. He wanted to explain in detail each of the options they would consider when hooking me back up after removing the tumor and bladder. They are:

1.Remove the bladder and connect the urether to the colon – which would mean all fluid would be processed through my colon, thus increasing my diarrhea.

2.Remove the bladder and connect the urether to the surface of the skin - very difficult to do as the urether is very thin and it’s near impossible to get an appliance to attach which means leaks are common.

3.Remove the bladder and connect the urether to the surface with a stoma created from excess bowel - no one knows if I have enough bowel to spare even this small amount. And according to my gastroenterologist removing any piece of my bowel will irritate it, set off the diarrhea again and chances are it will not ever heal nor slow down.

4.Remove bladder and urether and insert a tube into the kidney (nephrostomy) – chance of infection is great and the tube is permanent and has to be changed every 2 months (a several hour procedure that has to be done in the hospital)

I knew all of these, but it was good to discuss their pros and cons in detail with Dr. Karian. He also was able to add a 5th option – after scoping me he felt that he “might” be able to save a portion of my bladder and leave me with a very tiny but still internal bladder. Considering he felt that the bladder I currently have would not be practical for me that it would too small and I proved otherwise, we wonder just how many times I can beat the odds. Though at first this sounds like the best option - it’s not without a fair amount of risk and Dr. Karian is not certain he could do it. I could quickly discover that the bladder was too small, find myself cutting back on fluids thus dehydrating myself. And then I’d have to have yet another surgery to remove it when it turns out to be too problematic.

I thought I was ready to make a choice – or to be more accurate, to let the doctors make the choice once they were inside and could better see what was happening. I spent the last 4 months readying myself for this – making jokes like let’s have a “Bye Bye Bladder BBQ”; how I’ll now have a “wooden leg” and could drink a case of beer without ever having to leave the table; how I’ll be able to pee standing up now…etc. But I realized that other than scheduling the surgery and making my plans for my disability leave from work that I hadn’t really prepared myself. I chose to go ahead with the surgery because there are no other options – when I ruled out Proton Beam, Chemo, Radiation, etc, surgery was all that was left. So I didn’t chose it, I was stuck with it. And that’s not the same thing. I’m going through the stages of grief right now – and I’m stuck in anger for the time being. There’s a ways for me to go before I am at acceptance. And I don’t think I will get there by next week.

Based on this information, Pat and I decided we needed to talk to Dr. Nauta about some other concerns we had – and we thought we should probably talk to the neurosurgeon prior to the surgery to find out if there was anything we needed to be aware of in regards to the nerve. Remember those vacations I mentioned? So I haven’t been able to find out more information. And I feel like I can’t move forward just yet. I haven’t been able to say this in quite some time, but lately I’ve actually felt pretty good. I’ve been able to hike, bike, kayak and just be active. My pain is manageable and for days on end I am to forget about it. Other than some pressure on my bladder I am able to almost forget that this tumor is inside me and growing.

What I would like to do is postpone the surgery for a couple of months – rather than be pro-active I want to wait until I am symptomatic, but I need to find out the risks I am taking if I do this. I know the docs are afraid of waiting too long and having the tumor become inoperable, but I am not talking about canceling the surgery or putting it off for years. Just for a few months – giving me some time to actually enjoy life before making this life altering decision. This surgery is going to greatly impact my Quality of Life – and everyone knows that QOL is always forefront in my thoughts. I’m going to need some assurance that removing my bladder is not going to completely destroy my QOL and I haven’t gotten that yet.

In a nutshell, that’s where things stand. I have spoken with a handful of my doctors, some who are involved in this surgery and others who aren’t and the 2nd question out of all of their mouths was “why are you going ahead with this surgery right now?” I couldn’t and still can’t answer this. I think that it’s pretty obvious I am not in the right mindset to make a major decision right now. Pat and I are meeting with Dr. Nauta later this week and will bring all of this to his attention. I feel pretty confident that he will listen and we’ll be able to reach a compromise.

Thanks to everyone for their well wishes, thoughts and prayers. I will update later this week and let you know what we decide.

July 31

That’s my date. A bit later than I had hoped, but coordinating the schedules of 4 surgeons in the summertime is a bit like, well according to the secretary at the Department of Surgery, “getting an audience with the Pope.” Since I’ve never tried to do either of these things, I have to take her word on this. I’ve already entered the next planning stage – deciding when to start my leave from work, figuring out what needs to be done around the house beforehand, scheduling flights and caretaker time after the surgery, etc. Fortunately Pat and I just returned from a 10 day vacation to Banff and Jasper (Alberta, Canada) and while I can’t say that we “relaxed”, we did have a fabulous time – spent out days hiking and enjoying the Canadian Rockies. While early June was a bit chilly, it was the perfect time to see the wildlife – just out of hibernation, but not annoyed with the tourists. We saw white tailed and mule deer, goats, sheep, elk, moose and bear, lots and lots of bears. And the baby animals as well – fawns, lambs, and even a mama bear and 2 cubs. I took tons of pictures – will share some soon. All in all we had a great time – like I said we were busy so it wasn’t like sitting on the beach with a book for a week, but it was the perfect change of pace. We planned this vacation knowing it may be the last time for a while I am comfortable traveling (though who is ever really comfortable with port-a-johns???)

I’ll write more later, just wanted to send out the “save the date” info.

July it is

Apologies for the delayed update – technical glitch behind the scenes which locked me out of the website for the past week. Didn’t make much of a difference though because I didn’t have any information or news to share until yesterday. After several phone calls and frustrated messages, I heard back from Dr. Nauta’s assistant. She said he was finally able to arrange a conversation between himself and the other three surgeons he wanted on my case. Now that they were in agreement about what needed to be done, we were ready to schedule a date.

As we had previously discussed, July seemed to be the best option for many reasons. We decided to try for a Thursday since this was Dr. Nauta’s scheduled Operating Room time and so we knew this piece of the puzzle fit. We ruled out July 3rd because of the holiday and decided to try for either of the following two Thursdays – July 10 or July 17. The problem now will be coordinating the schedules of 4 surgeons to make certain they can all be available. Because Dr. Nauta is Chief of Surgery at Mt. Auburn, he does have some clout and I think this will make some of the other doctors a little more flexible with their time. At least I’d like to think so.

In addition to Dr. Nauta who will be doing the majority of the operation, the other doctors include my urologist, Dr. Karian, a neurosurgeon, Dr. Wells, and another general surgeon, Dr. Vittemberger who was actually the first surgeon at Mt. Auburn to operate on me all those years ago. He still recognizes me and says hello in the hallway when I see him.

I should get a final date from his office by the end of this week, but I feel much better knowing that we are this much closer to getting this over with.

OK, late night, much to do. Back soon.

Still waiting

I’m not holding out and keeping my surgery date secret. I still don’t know when it is going to be. I’m a bit frustrated at this point and just want the date so that I can move forward with planning my next few weeks of freedom. I’ve left a couple of messages for Dr. Nauta and finally today I heard through the Mt. Auburn grapevine that he will let me know my surgery date by the end of this week. There are many things I need to do to prepare and I don’t think it’s unreasonable for me to ask for 6 weeks of lead time before the surgery. In the past I’ve had surgeries that were scheduled 1 or 2 weeks out and those were stressful as I struggled to quickly get everything in order – work, home, family, etc. I definitely left many loose ends with those surgeries.

I’ve also had surgeries that I knew about weeks or months in advance – and those are stressful in a whole different way. It is possible to have too much time to think about things – I end up trying to micromanage. Given my history of unexpected complications (my leg for instance…) I am actually not freaking out about the “what if’s”. I know I can handle whatever is thrown at me – at least physically. Right now my imagination is getting the best of me and I am assuming that the reason I have not heard from Dr. Nauta with my surgery date is that he can’t find a neurosurgeon willing to take on my case – that the doctors don’t want to operate on me because of my history and previous complications. I know this isn’t the situation, but in the 3 weeks since I met with Dr. Nauta and told him to go ahead and schedule things, this is one scenario that keeps popping up. I’ve been assured that this is a crazy thought and not even a possibility. I’ll rest easy when I have my date and list of doctors – maybe not. I’ll be able to focus on worrying about the actual surgery and recovery, something more concrete and reasonable to stress over.

Back to Reality

I had planned to update this site much sooner, but I had to tell some people personally before I posted the following and those of you who know me, know that I am really good at procrastination. Plus I’ve been swamped at work lately which means that by the time I arrive home at 7pm most nights I crash, hard. Weekends have not provided much of a respite either, there are always projects needing attention. We also had some house guests for the better part of a week – Yay!!! Company!! We love company! Gasbarro’s B&B is open for business. My garden is looking fabulous (pictures to follow) and Pat has found his gardening niche in excising hundreds of dandelions from our lawn. His next project is to lift the shed 6-8 inches as it currently leans toward its back left corner - poor Cooper is terrified of the building and won’t even go inside. Perhaps I should listen to his animal instincts?? Why the original builder thought placing a shed on the edge of the wetlands was good location is beyond me. The 4 pillars on which the shed is supposed to rest have shifted and 2 have fallen over completely. Pat’s got his work cut out for him, but he has a plan (and a spreadsheet- wink, wink) and will only do the work when I am around and have 911 on standby. Standby for photos.

See told you I was good at procrastinating – I managed to get off topic for a whole paragraph and make you forget why you were here in the first place. Pat and I met with Dr. Nauta (my favorite Chief of Surgery at Mt. Auburn) twice this past month to begin to formulate a plan since surgery became my only option. His initial reaction was to tell me he wanted to schedule surgery for as soon as possible. I suggested October or November. We decided to do an MRI and see where things stood and make a decision based on the size and location of the tumor. I agreed to the MRI for May figuring that even if was bad news the earliest we could schedule surgery would be June and that would get me to the deadline I needed to reach in terms of my disability insurance at work. I needed to be back at work for 6 months full time in order to qualify for some changes to my disability insurance. Long story short - June 3 will be 6 months and it’s now definite that I will make this date. Again off topic…

I had the MRI done on May 13 and met with Dr. Nauta immediately afterwards. He had not had time to get a clear read of it, but he was able to say there wasn’t significant growth. However, we have decided to go ahead and schedule surgery for early July. Pat and I talked at length about this and weighed the pros and cons of delaying the surgery. The biggest concern is the proximity of the femoral nerve (and vein and artery) to the tumor. In an abdomen that has not undergone surgery, it would be easy to locate and avoid this, however my insides are so mixed up and full of adhesions that nothing is where it should be. I’ve had some leg issues over the past few months which we are attributing to the tumor pressing on the femoral nerve – twinges, twitches and one episode of the leg buckling out from underneath me. It could be unrelated which is what we are hoping, but we aren’t taking any chances. Dr. Nauta will be including a neurosurgeon on his surgical team to avoid a repeat of my last surgery.

We know that no matter when the surgery occurs, I will lose my bladder so this is a huge reason for me to delay the surgery as long as possible. The doctors don’t know what sort of hook up I will be left with (ostomy-wise) and probably won’t know until they go in. We’ve discussed a few options and before the surgery I will give them my order of preference, if it comes down to actually having a choice. There’s a good chance the decision will be made for me by the size of the remaining urether. The longer I delay the surgery, the greater the chance of there being small intestine, bowel, or colon involvement. Dr. Nauta does not see the bowel loop that Dr. Zeitman saw on my CT scan, but he can’t say for certain until he is inside. Since I would really like to avoid waking up with 2 ostomies, I’m opting for surgery sooner rather than later. We are hoping this will also mean the surgery will be less invasive than previous ones - perhaps the only area that will be impacted will be the bladder and I won’t have to deal with an NG tube, a bowel asleep for days, and a lengthy hospital stay.

Right now I am waiting to hear back from Dr. Nauta with a surgery date – he wants to assemble his ideal team for this –my urologist (Dr. Karian) and a neurosurgeon. Being summer and vacation season it’s harder to coordinate this many schedules. I’m seeing Dr. Lange this week just to check in and hope to have a firm date by the end of the week. Then I can start to get things in order to prepare – my mind, my work, the house, Pat, etc. I’m not looking forward to this. I just started to feel pretty good, got busy and distracted with work and am actually looking forward to the possibility of traveling. Instead I’m looking at surgery where the best possible outcome is the loss of my bladder. Enough said….

Biopsy Results

No surprises here, the results came back Thursday morning and confirmed what we already knew. The tumor is muscinous cystadenocarcinoma (of the appendix). Dr. Karian called me bright and early Thursday morning to give me the report and to let me know that he planned to talk with Dr. Nauta later in the day. At least that solved my problem of not knowing who/when to follow up with. I placed a call to Dr. Nauta’s office and left a message. A couple of hours later I heard from Dr. N’s administrative assistant who told me that:
1. Dr. Nauta was out of the office for the remainder of the day
2. She would give him my message and he would call me on Friday; and
3. She confirmed that he had seen the pathology and spoken with Dr. Karian
So now I am (still) waiting, and formulating my end of the conversation. Somehow I have to convince Dr. Nauta, a surgeon, that surgery is not my only options at this time.

Pat and I have been doing research and have come up with 2 options that we hope are possibilities for me. They are both radiation based, but much different than the type broad scope radiation I had 8 years ago. One is cyber knife (available at Beth Israel in Boston) and the other is proton beam (available at Mass General). They are specialized techniques and are used on isolated single tumors, which we believe my latest recurrence can be classified as. There are side effects and we are not certain if either technique has ever been used on the bladder, but I’m hoping someone is willing to give it a try. We are still in the very early stages of research and will be counting on my current team of docs to steer me in the right direction. Typically radiation is a no-no for PMP, but I have it on good authority that cyber knife has been used, somewhat successfully on a few cases of PMP. Of course once we find out if this medically an option for me, we start the uphill battle of explaining to the insurance company why this “experimental procedure” will cost them less than another hospital stay.

More to follow…

Still Recuperating

Thanks to Pat for updating the site yesterday to let everyone know the procedure went as planned. I was home and asleep in my own bed by noon, and spent the rest of the day in and out of dreamland. Cooper seemed a bit put out having to share the bed with me in the middle of the day, apparently I was in "his space". We eventually found an acceptable resolution and split of the bed.

Dr. Karian warned me ahead of time that he thought I would be going home with a catheter for a day or two. Not only did I prove him wrong, my bladder was fully functioning within minutes of the catheter removal, much to the surprise of the nurses. After my 3rd request for a bedpan, they decided I was good to go (home). So now I'm home, in the comfort of my own bathroom with some minor discomfort that should go away by the end of the week.

Apparently the biopsy was uneventful - Dr. Karian was able to remove most of the tumor from inside the bladder and send it for a pathology. Part of it had to remain as it is connected (which means it has penetrated the bladder wall) to the tumor on the outside of the bladder, which is connected to the abdominal wall. Not what we were hoping to find, but we got a better picture of the situation without a major surgery. Dr. Karian talked to me about the plan for the week, however he did this while I was in Recovery and of course I can't remember a thing. I'll be calling him Thursday or Friday for a re-cap.

In the meantime I'm taking a few days to recover, physically and mentally from this and start to formulate the next steps. Pat and I are both anxious to find an option that doesn't involve full surgery so we have made a few phone calls based on newer treatment options we have researched. For now we are in the information gathering mode, as most of what we have found would be considered experimental for this type of cancer.

Thank you all for your prayers and well wishes. I am sure they played a part in my quick recovery and release from the hospital on Monday.

More to come.

Jean's Back Home

Jean's procedure day surgery / procedure is over. It went quickly. She's back at home now (2:00 PM) and resting in bed, recovering from the loopiness of general anesthesia and the cystoscopy. She'll post an update in the next couple of days. Thanks for all your good wishes and prayers! Pat

A Little Good Luck

I didn’t want to jinx myself, so I waited a few days before updating with my good news. Dr. Karian removed my catheter on Thursday. Yay!!! And the plumbing all seems to be working just fine. There is still a small leak, but he wasn’t concerned so I won’t be either. I haven’t slept through the night since he pulled it, but eventually I think I’ll stop getting up every two hours – I’m just afraid to let too much accumulate for fear of bursting another stitch. Dr. K said not to worry about it, but I’m taking no chances. Eventually I should be able to sleep a few hours more and then maybe even move back to my side of the bed. I think we’ll all sleep better once that happens.

Pat and I decided we needed to celebrate this momentous occasion. Going out to dinner just didn’t seem like enough, so instead we bought a house! OK it’s not really to celebrate me losing my last tube it’s something we’ve been trying to do for 7 years, but the timing was appropriate. It’s been a good week for the Gasbarro’s. Pat is into his second week at his new job and he really likes it and they seem to really like him – so much so they want to send him to see clients in California, Ohio, and Vermont. So far he’s only been to Vermont, but eventually one of these trips will work out especially now that I am feeling stronger and less dependent on him for everything. But I digresss….

For the past 7 years, off and on, Pat and I have been checking out properties in Massachusetts. We both knew we wanted to stay in New England. I plan to continue working in Boston and his jobs have always been within the 128 circle. We love our current apartment and have lived here since our beginning. It’s a great amount of space, terrific landlords and an awesome deal on rent. However it’s Somerville – just outside of Boston so street parking from which our cars have shown the scars, neighbors right on top of you who know your every business and whose alarm clocks wake you at all hours, and no place to sit outside and take in the sun. We missed being able to relax outdoors. We both love the ocean and dreamed of living nearby it, but housing prices there were and continue to be prohibitive. So we decided to look towards the country or at least further outside the city than Route 128. We looked north in towns like Andover and Reading, south in towns like Kingston and Pembroke, and west in towns like Hopkinton (the starting point of the Boston marathon, hence 26.2 miles from downtown Boston) and Holliston. In all of the communities we saw properties we liked but nothing that grabbed us. The housing market continued to rise, my health continued to fail, and the timing was never right.

Until now. We set a deadline of December for moving. It’s no longer a seller’s market, prices are starting to fall within reason and since its spring there lots of homes to see. We thought we knew exactly what we wanted – something old with lots of charm and character – we love hardwood floors, beautiful moldings, pocket doors, butler’s pantries, built in china cabinets. If we lived in California our ideal home would be a mission style bungalow. But this is New England and while we have lots of old and charm, there wasn’t a lot of it in our price range. However an interesting property popped up a few weeks ago (my online shopping has expanded from Amazon.com to Ziprealty.com – slightly more dangerous in terms of our pocketbooks) and at the same time a realtor we had met last year also called to check in. I thought it was fate, so set up an appointment to see this charming Victorian along with a few other properties in Holliston and Hopkinton. All the houses I set up to see were different styles – figuring it would help us decide what we liked and disliked about each type.

We saw the Victorian that we both absolutely adored and drooled over, but realized that the land was a complete disaster and would be a huge project – one neither of us really felt we could tackle. The other houses were unremarkable, but the final property on this first day out caught both our eyes. It was a contemporary built in 1982, lacking all the extras that we so vehemently insisted we must have, was painted every color of the rainbow on the inside, but sat on an acre and a half of the most beautiful lush green land that we had ever seen. We went home that night without making any decisions. We talked about what we liked and didn’t like during the week, both realizing that this contemporary home had really caught us by surprise. Could we change our expectations for our future home?

We set up an appointment the following weekend to see a bunch more homes in the same area and decided to go see this one again as well. The first 4 were once again nothing striking, but as we pulled into the driveway of this contemporary home once again, I knew. It just felt right. We walked around again, checked for water damage since this was right after the weeklong torrential storms we had and found none. The small stream in front of the house was larger than at our last visit, but the house itself was dry. I wandered and let Pat wander in a different direction. Finally he came to me and said he wanted to put an offer in that day – I instantly agreed. And less than 24 hours later our offer was accepted. The home passed inspection last week and we are about to commit to both the P&S and a mortgage this week. Whew…It’s been a whirlwind process, but we are both thrilled beyond words.

It’ll be a little tough on me at first since its 2 stories with a basement which means a fair amount of stairs, but I know my knee will eventually heal and so I’ll make do until then. It also means I might not be able to do as much as would like in terms of packing (oh darn) and painting (every room in the home will need to be repainted) but it will all get done. Don’t worry we’ll be calling in all our favors over the next few months. I can live with the colors temporarily and we can take our time making this our home. We plan to live there for the foreseeable future. We both have a lot to learn about home repair and more importantly yard work. It’s a beautiful lawn but since I can’t exactly mow it, poor Pat will get stuck with that chore at least for now. In case you are interested, here’s the outside front and back and our shed and backyard.

We realized moving to this community means at least an hour commute for me, but that’s something we knew was coming someday. I’ve never wanted to move too far away from Mt. Auburn Hospital and that has been an issue for the past several years. With my weekly Erbitux treatments last year a move outside of the city was almost impossible. I didn’t want to do my treatments elsewhere so changing doctors or treatment centers was not a possibility. However last month, together with Dr. Lange we decided not to do any further treatment. My body just can’t handle anything else and we have no evidence that the Erbitux was effective. Instead we are going to do CT scans every 3 months and follow any disease progression this way. It’s the only option right now and one that both Pat and I are comfortable with. I know that Dr. Lange has not given up on me and we will all continue to monitor the medical journals and clinical trials for any treatments that might be effective. I am looking forward to getting back to my old self. It’s been almost 2 years since I’ve felt good. My skin is back to normal, no rash, no dryness, my hair is no longer brittle, no bumps in my eyes or ears, but the diarrhea is still around and annoying. Hopefully this too will one day pass. I am at peace with this decision and am looking forward to taking these next steps in our lives and maybe leaving a bit of this disease behind.

Sorry this was so long, but I had so much to share and the time was right to fill everyone in. Later…

Where I Should Be

According to the neurologist we met with last week, I am right where I should be in terms of my leg healing. I pointed out to him that technically I shouldn’t be dealing with this at all, that the nerve damage was an unexpected side effect of the surgery, etc. He responded by saying, “Well, yes but in terms of a compressed nerve you are making the progress we like to see”. I guess that’s good news. I have a lot more feeling and movement than I did when they last saw me in the hospital and they were glad to see me getting around with the brace and one crutch and to hear that the physical therapy was going well. I asked the expected question of “how long is this going to take” and his response was to tell me to measure from where the damage occurred to the top of the muscle and figure that the nerve will re-grow at a rate of 1 millimeter per day. I’m still looking for a metric measuring tool in our house, but the estimate is still between 8 months and a year. If I don’t get an estimate when I finally have the EMG test done, then I’m sure I’ll get one when I start my out patient physical therapy.

EMG stands for Electromyography, which is a test that assesses the health of the muscles and the nerves controlling the muscles. It will give us confirmation that the nerves were compressed and not severed during the surgery. The neurologist said we don’t need the test to make a diagnosis, but it will give me piece of mind, which is what I need. If the nerves had been severed then I would not have feeling and movement in my ankle and foot as I do. I realize this, but still want the test so that we are absolutely certain I will get full mobility back in my leg sooner rather than later.
The test is relatively simple – a needle electrode is inserted through the skin into the muscle. The electrical activity detected by the electrode will provide information about the ability of the muscle to respond to nerve stimulation. My test is scheduled for the first week of June, which is also when I begin my outpatient physical therapy.

I was frustrated when I first heard these dates, but a glance at the calendar reminded me that June is just 2 weeks away, so I guess I can hold out until then. My at home physical therapy ended last week, but for now I continue my daily exercises at home and have been getting out and about which will help as well.

My first week at home on my own was long, especially with the rain, rain and more rain we had here in New England which kept me cooped up inside, but I got through just fine. I got my own breakfast and lunch, kept well hydrated and even prepared dinner one night. I also went through all of TiVo and Netflix movies, a few lousy romance novels and all my catalog shopping. I also had to make an unexpected visit to the urologist. After my last cystogram they changed my catheter and for some reason the new one was feeling very uncomfortable. It was as though it was too big for me, even though it was the same size as the one they had removed. No need to share all the details; however I now have a new smaller catheter and am much more comfortable. We’ll be making a fourth attempt to remove it permanently this week.

I’m going to spend the early part of the week in Rhode Island, getting a change of scenery from these walls, but will return to Boston for my urology appointment on Thursday. We’ll be sticking around Somerville n for the long weekend so if you find yourself in town give us a call – I’ve actually been up for some socializing lately!

Later….

All is OK

Hi everyone. Apologies for not updating the blog for 2 weeks. I’ve thought of several excuses that I could use, but the truth is I needed a bit of a break for a while – which I know you will all forgive me for. I was busy for most of the time too – I had company which meant getting out everyday, then I needed a change of scenery to a locale with poor internet access, etc. etc. I don’t like to write blog entries when I’m feeling “blah” because it’s harder for me to find the words to express myself, so I waited until I had some energy and time for myself. This is the first day of my first week completely on my own since the surgery. It’s a daunting week before me. And this non-stop rain is not helping either!!! Am I asking too much for some sun so that maybe I can take a walk outside instead of pacing the kitchen – dining room – living room combination?

The latest on the health front is pretty much the same as when I last posted. I was supposed to have the catheter removed last week, but alas the hole in my bladder still has not healed and so I am stuck with this thing for another 2 weeks. I told the urologist that I’m going to pull it out myself if he doesn’t remove it next time (he knows my history of removing tubes from my body when I’m done with them, so I think I he may believe me). The problem is that the hole has not even gotten any smaller and so removing the catheter puts me at risk for infection. However if it hasn’t healed in 10 weeks (which will be the amount of time by our next attempt) chances are it isn’t going to heal on its own. I’m not certain what the next step will be, and I’m sure he’s not certain either but he’s got 2 weeks to come up with a plan. The hole can’t be fixed from inside the bladder and my adhesions make laparoscopy an impossibility, so the only option is another full blown surgery which neither of us really wants. I’m actually not spending much time or energy thinking about this right now – I trust Dr. Karian’s instincts and will go with whatever he decides as long as it includes me getting rid of this bag.

My leg is still the same – I have about 65% use of it and the rest is going to take a lot of work to get back. I’ve seen my physical therapist once a week, do my exercises two times a day and walk around as much as I can. I still need the brace if I am going to be walking or standing for longer than 10-15 minutes though I down to one crutch most of the time. I bring 2 with me sometimes just to have something to lean on when I get tired, which happens often. I am hoping to begin out patient rehabilitation in the next week or so. There is a facility close by which seems to be approved by my insurance company and will also be a cheaper cab ride for me since that will be my primary method of getting there. The physical therapist I current work with is also based there and I really like him, so I’m hoping the other PTs are just as nice, but also willing to push me hard. I needed to gain physical strength before doing outpatient physical therapy and I think we are all agreed the time is right. I’m looking forward to it and to getting out of the house on a regular basis.

I do have more to report, but I’ll save that for another entry. Thanks to everyone for checking in on me and giving me the nudge I needed to post this latest entry. Until later…

Mattress Musings

My title for today’s blog entry is threefold. It’s partially because the majority of my entries are composed in my head when I am in bed trying to fall asleep. My brain keeps functioning for hours after my body has given up for the day. I take lots of mental notes and decide what to complain about in my next blog entry. I have a lot of trouble sleeping lately mostly because I can’t get my leg comfortable and partially because I really want to avoid taking anything to help me sleep. I’ve given in and taken some sleep aids, but mostly I just toss and turn, put a pillow under, over, next to my knee. I keep getting tangled up in my catheter and have discovered it is possible for a leg that has very little feeling to cause me great discomfort and pain. I’ve finally gotten rid of the nasty ankle pain from a few weeks ago by eliminating one exercise from my daily regime. The physical therapist said this would be OK and wouldn’t delay my recovery and the fact that the pain is now gone is a small consolation. Eventually I’ll find a position that is comfortable and allows me a good night’s sleep.

The second reason for Mattress Musings is related to the first. The catheter and the leg: Because of both of these things I’ve had to switch sides of the bed with Pat. Now many of you know when you are used to doing something for say 7 or 8 years it’s really hard to change a habit. Well in our bedroom our queen size mattress is nicely tucked up against 2 walls, which means for the past 7 years I’ve been climbing over the footboard or over Pat to get to my side each night. Even during previous surgery recoveries I’ve done this. I have a fair share of bruises from not quite making it over the footboard, and from trying to make it to the bathroom quicker than my legs could manage. This time we immediately realized that would not be possible for me to do all this climbing. I need to be able to get out and to my crutches, not to mention have a place for my lovely catheter night bag. So Pat and I switched sides of the bed. It took us both a while to adjust – and while I’m still not sleeping great I have found some comfort on my new side of the bed. Pat on the other hand doesn’t seem to be enjoying his new side – there’s no light (though he recently remedied this with the purchase of a very bright book light), no place to put his book and book light when he is finished, and he has to reach over me to shut the alarm off in the morning, that is when I remember to turn it on. I’m not thrilled with the responsibility on my new side of the bed - set the alarm, shut off the light, put down the nights reading, all because it’s the side with a nightstand. Well, it’s only temporary….

And the final reason for Mattress Musings is our actual mattress. It was a first anniversary present from Pat. We had just bought our bedroom furniture and upgraded from a full size bed to a queen. “What luxury!” we both thought. It was about 5 months since my initial diagnosis and I was mid-chemo treatments and experiencing the first of my “don’t come near me” periods when everything about me seemed supersensitive and I didn’t like to be touched by anyone – anywhere. So the queen sized bed seemed like a good idea (and we knew there was no way we’d ever get a king into our bedroom), so I got the space I needed, we both got a new mattress and all was well for a while. I’m now in another “don’t come near me” phase thanks to this leg. As I said earlier, it’s supersensitive and doesn’t like to be touched – either by people or by clothing, sheets, etc. It’s not a lot of fun. The rest of me would love to fall asleep in the comfort and security of my husband’s arms, but because I can’t get comfortable and am constantly tossing and turning, I stay in my corner and he stays in his and usually one of us gets a few hours of uninterrupted sleep per night.

I think that’s all from me for today. I thought we could all use some humor and I’m starting to feel a little more like myself as I approach the one month anniversary of my discharge. Judging from times past, this should be a good few weeks for me – assuming this silly bladder actually heals. No Caribbean vacation for us this time – but I wouldn’t mind some slightly warmer temps here in New England. I didn’t appreciate having to put on gloves for today’s walk – it’s May 1st for Pete’s sake! I know it’s coming and I’m not complaining all that loudly because at least its not snowing, but the poor trees were just getting ready to sprout some leaves and now they look like they want to go back into hibernation – not that I blame them. I am going to put away the winter stuff in the next week so that will be the signal for us to have a beautiful spring snowfall – kidding, really I’m just kidding. I don’t think my personal black cloud is spreading across all of the Boston area.

Oh one last thing I forgot to include in my last posting "Happy Anniversary Honey" Hard to believe it's been 7 years - at least the first 6 months were great!!! We both could have done without the last 6.5 years but we've had some pretty amazing experiences during this time. I look forward to many, many more.

Oh Well…

Didn’t realize it has been a week since I last posted. I feel like I wrote at least 2 or 3 updates over the past week, but guess I never actually got them down on paper (or computer screen). Well, this one is getting done. I haven’t been “busy” the past week, just a little pre-occupied. My mom left on Tuesday, so I’ve been officially been on my own since Tuesday afternoon – however, Pat decided to work from home on Wednesday and I spent 5 hours at doctor’s appoints and out gallivanting on Thursday, so I guess I really haven’t been “on my own” just yet. And the way things are looking between out of town guests and Pat’s schedule, I won’t really have to find out what I can and can’t do when I’m by myself for another couple of weeks. I’m not complaining.

I did have a few hours to myself here and there and they were OK. I’ve managed to get my own breakfast and carry it to the table without falling or dropping anything and that’s an accomplishment. And I’ve been able to keep up with beverages so no danger of dehydration either. All in all, pretty successful. My upstairs neighbor also noticed I hadn’t been outside for a few days so now she knocks on my door once a day to take me for my daily constitutional around the neighborhood. I’m really grateful for the exercise and the company. I am lucky to have so many people watching out for me.

Now onto the not so great news. I had another cystogram today followed by an appointment with Dr. Karian in anther attempt to remove my catheter. No go. The bladder is still leaking, so 2 more weeks of this ball and chain. I finally asked him if was worried it wasn’t going to heal and he said no, “I’ve never not seen one of these heal”. I reminded him who we were talking about and he said that in my case it’s taking longer because of the damage caused by the radiation (5 years ago!!!) and also possibly because I am not absorbing quite as many nutrients as I should. He’s worried about my weight loss and the fact that I haven’t put anything back on since I’ve been home. I’m only just getting a semi-decent appetite back, so I’ll be making an effort to eat a little better (perhaps even a green vegetable or 2). The problem, we all know, is not what or how much I eat, but how long it actually stays with me. Average time is about 30 minutes, so I’ll be working on ways to slow this end down once again.

We also had a follow up appointment with Dr. Hanto this week. I told him that I had almost forgot about the fact that he cut me open 3 times in 3 weeks, that I really had no pain or problems with that part of my body. I also let him know that I am very happy with my incision – it’s healing great and is my prettiest one to date, though I am still considering having a zipper installed. It was a good appointment – he’s pleased with my healing, still ignoring the leg issue, and following the bladder problems. I have physical therapy tomorrow and I’ve been very diligent with doing my exercises twice a day and walking (with the brace) as much as I can. I’ve gotten out to a few museums (though I did give in and use the wheelchair at the Peabody Essex just because I wanted to see all 100 paintings in the exhibit and I knew if I used the crutches I’d tire after about 30), to the mall, around the block, to the grocery, etc. I have about 3 hours of social / outside time in me then I crash – and then I remember that I’ve only been home 3 weeks, not really a long time in terms of recovery.
That’s pretty much all there is to report on my end. I continue to have good days and bad ones – usually after a rough night, but that’s to be expected. If all I had to do was recover from the 3 operations in 3 weeks, I’d probably be back at work in another week, but thanks to this leg issue all my recovering is slowed and I’m just going to continue to take it nice and slow.

Bummer…

I guess I’ll keep my day job since I don’t seem to have the ability of properly reading x-rays and scans. Actually that’s not completely accurate. The side of the bladder that I could see during my cystogram last week did not have any leaks. However, the other side that was out of my line of vision did still have a leak. It’s a small one, but because the bladder isn’t healed completely I had to keep the catheter. Dr. Karian was very glad to see me and said, “I could have called you with this news rather than make you come in, but I wanted to see how you were doing in person.” He knew about the leg injury but was surprised when he saw the brace and crutches and I told him that I couldn’t walk without both – he also thought I had lost a bit too much weight and told me I needed to eat more! Although I was disappointed in having to keep this ball and chain, I understand the reasons and don’t want to push things too quickly and end up with more problems down the road. The current train of thought is that my bladder is taking longer to heal than a “normal” bladder because of the previous surgeries and more likely the radiation in 2001. Dr. Karian doesn’t seem to think that it won’t heal and I’m scheduled for another cystogram and follow up appointment next Thursday. At least this time I know what to expect from the cystogram and I won’t have the pre-appointment jitters because it’s not a painful or uncomfortable test.

The good news is that I am beginning to get out a bit more. Over the weekend we drove out to Lexington and walked around the town, watching some fife and drum corps prepare for Patriot’s Day. I did some shopping and got some ice cream. Sunday we had a delicious Easter dinner with friends. It was an exhausting weekend, but a good one. After my appointment at Mt. Auburn, I decided I wanted a sandwich from Darwin’s, which is down the street from the hospital. I did manage to walk from the hospital to Harvard Square which was a real accomplishment. I was tired afterwards, but energized as well. Today my mother in law came up from Rhode Island and too my mom and me to Burlington Mall. It was another exhausting but invigorating day – shopping seems to make me feel better.

My physical therapist continues to be impressed with my progress and strength. I have had some pain issues in my ankle which he seems to think is the nerves waking up and trying to figure out what it is they are supposed to be doing. I have had to cut back on certain exercises because they trigger this pain, but we are hoping this is just a temporary problem. I am walking more around the house with only one crutch, but I definitely don’t have the strength or confidence to try this outside the house. Fortunately we have enough clutter around the house that if I were to lose my balance or have my knee buckle there would be something close by for me to grab on to. Who knew that all these bookcases would come in handy for something other than holding books?

Happy Easter!!

It’s been a good week. Wednesday we saw Dr. Hanto, played up the invalid thing as I struggled to get on the scale, the exam table, etc. Unfortunately it was not really an act – it really is hard to get up on that table with one leg stuck out straight in front of you. At least it forced him to acknowledge the leg damage and he decided he needed to start receiving reports from my physical therapist. Can’t wait to tell Dan that one – there are a few things I know he’d like to say to the doc, though I’m not sure he’ll let loose like he did to me the first time we met.

The appointment went well. All looks good – I’m healing well, blood work was good, no more IV antibiotics, which means I got my port de-accessed as well so I don’t need to Saran Wrap myself in the shower each morning.. Dr. Hanto cautioned me regarding the cystogram I had done today at Mt. Auburn. He reminded me to remind the docs that I have a fragile and small bladder that is easily damaged. I wanted to remind him that Mt. Auburn has never damaged my bladder the way he had, but I didn’t. I get a 2 week reprieve before I have to have another follow up. I’m hoping to be catheter-less by then.

I had the cystogram at Mt. Auburn today and it went well. The doctor there recognized my name and listened to me when I explained the fragile state of my bladder. He was careful when he filled it and I never felt any discomfort which means he didn’t overfill it. I got a pretty good view of the screen as he was taking the x-rays and did not see any contrast outside of the bladder, which should mean that the hole is healed. However, the doctor did not say anything to me, other than to promise to review the x-rays with Dr. Karian this afternoon, so I have no official word yet. I’ll see Dr. Karian Tuesday and if all has gone as expected, the catheter will come out. That would be awesome, but I’m not going to get my hopes up just yet.

The nice weather has gotten me out of the house a bit this week which does wonders for my attitude. I’ve gotten a few good walks in, got out for some ice cream, and even managed to do a little shopping. It’s all good progress. My leg still feels weak and it definitely throbs a lot more after my outings, but I know this just means it’s waking up. I’m doing my exercises twice a day on top of the walking which should all be helping the muscles wake up. It’s all good. Or at least that’s what I keep telling myself. The blooming flowers and warm temps have me fooled that Spring is here, but I’ve looked at weather.com and know that New England April temps will be back next week, so I’ll need to soak in as much sun and warm weather as I can while it lasts. We have beautiful flowers on almost every flat surface in the house so even if the temps drop; I’ll still have some reminders of spring to keep me going.

I hope to get outside a bit more this weekend – maybe help with some errands on Saturday and Sunday we’ll be headed to a friend’s house for a delicious Easter dinner. It’ll be nice to relax and enjoy the company of good friends for a few hours. Pat usually cooks Easter dinner, so this is a nice break for him, though I’ll probably ask him to make some fresh bread which I haven’t had in a while. Mmmm…challah….

Happy Easter everyone!!

Still home, still recuperating

Apologies for the delay in posting another update. Fortunately in this case, no news is good news. I’ve just been really lazy and haven’t felt like writing – it usually takes me a while to get my mind trained to think again after a hospital stay. I’m settling into a routine at home, up at 8 to run my antibiotics, breakfast while they run, then my physical therapy exercises, followed by a shower, then a nap because all of this work has exhausted me. Then there is lunch, followed by either some TV or if I’m feeling energetic, a game of some sort. I introduced mom and dad to Pass the Pigs and they are enjoying kicking my butt in it. Afternoons I have been trying to get out for a walk to the corner and back. It’s about a 15 minute process to get ready for the walk, getting on shoes and socks, the leg brace, etc, and then about a 10 minute walk, after which I’m ready for my afternoon nap.

Actually I am feeling a lot stronger than a week ago (woo hoo I’ve been home for a week!!) and definitely have more energy now that I’m eating mom’s cooking as opposed to hospital food, though I do miss having a Dairy Queen close by – those afternoon cones were a nice treat.

I have a physical therapist come in once or twice a week and exercises that I do twice a day to get the leg moving. I’m at about 60-65% usage of it which is great, but I get frustrated too easily. Sunday I decided I could get down to the floor to change a CD, and I got down just fine. Just couldn’t get back up. Pat and my dad had to pull me up. Then last night I was standing up getting ready to climb into bed, stopped to scratch an itch and next thing I knew I was laying on the floor. The leg gave out without any warning. Again Pat had to pull me up. Considering the fact that I move around a bit without the crutches in the house, only 2 incidences is pretty good. I won’t be taking those chances when no one else is here and Dan, the physical therapist, is going to show me how to pull myself up if it does happen when I’m alone. I just have to learn to have some patience and most of you know that is not my strong suit.

I have a follow up appointment today with Dr. Hanto. Don’t really expect anything to come of it; however it will be a good opportunity to get out of the house for a little while. Maybe I’ll be able to convince Pat to stop somewhere else for a little while so my outing has some fun involved in it, not just a hospital visit. I also have a test on Friday to check the bladder to see if it’s healed. If it has then the catheter comes out on Tuesday. That will be a huge relief and one less thing I need to drag around. These follow up appointments are at Mt. Auburn where I decided to switch back to for my own piece of mind. Dr. Karian was happy to take over my care once again.

I’ve been catching up on some movies, seeing some friends and family on the weekends and in the evenings and receiving some beautiful flower arrangements and one huge edible arrangement of fruit which was quite tasty, so being home has been good to me. We appreciate everyone’s thoughtfulness and generosity over the past few weeks – and look forward to seeing more of you as the weeks go by. I’ll be homebound for a while, so if you find yourself in Winter Hill, give a call and hopefully I’ll be awake and up for a visit.

Being home is exhausting

I’m still very happy to be home, but boy was yesterday a busy day. The phone didn’t stop ringing – a combination of doctors offices checking on me and stopping one of my antibiotics temporarily and other people just checking in to make sure I was home OK. All my home care services came in to make sure I was set up with everything I needed. Then the physical therapist came in to assess me and start me on an exercise program. It was a good day, but my afternoon nap felt really good.

I’m sleeping well in my own bed, getting around the house with either a walker or crutches, depending on my mood, and getting my appetite back. And today, a big accomplishment – I took a shower!!! We got a shower chair that I was going to use, but it was too big for our tub, so I decided to try it standing up. I was able to hold on and stay upright for a full shower including washing my hair. It was definitely a big improvement over sponge bathing.

Energy levels go up and down as I try to do more, but that’s to be expected. I still don’t have a great attention span so I tend to do things for short amounts of time, though I didn’t manage to watch an entire movie last night. Mom and dad are still here and both Pat and I are grateful for the assistance. Mom makes sure I’m eating and drinking and dad is getting good a playing drill sergeant to get me to do my exercises.

I’ve got a long road ahead of me, but I know I’ll make it through eventually. Right now though, I’m going to have some lunch and find some other way to distract myself for a while.

JEAN IS HOME!!!

Incredible but true. They sprung her around 2pm on Wednesday afternoon. This was her longest consecutive hospital stay ever. And more good news – she is the one writing this! Now that I’m home I told Pat he was relieved of his updating duties. He’s done a phenomenal job of keeping everyone up to date it has been appreciated by all, including me.

I came home with a lot more than I thought I would and missing what I though I would have – keeping count, I have my port, still accessed because I need IV antibiotics, a catheter, for at least 2 weeks until the bladder leak seals itself, my knee brace and crutches which allow me to walk. I don’t have my right kidney or ureter. But y’all already knew that – I’m just dwelling on it right now.

I’m going to keep this post short because I am tired and need to relax a little before my nursing visits tonight. They sent me home on IV antibiotics for the next 7 days, as a precaution, because they never did figure out what caused that 101.4 fever from the other night. The CT scan showed some fluid in my abdomen but nothing to worry about and nothing that they could drain. So instead of switching me to oral antibiotics, they are keeping me on 2 of the stronger IV ones. I have to have one dose at night and one in the morning for the next week. They left my port accesses so it will be relatively simple to do and the nursing company is coming tonight to do the first dose and bring us the rest of the medications.

I’ll also be getting visits from the Visiting Nurse Association just to follow up with wound healing and to see how I’m getting around on my leg. And I’ll have in house physical therapy for at least a few weeks. I’m technically classified as “home bound” for the next few weeks which should prove interesting for me. If the weather ever gets nicer I know I’ll want out the door and I plan to go.

I have a bunch of follow up appointments already with Dr. Hanto, a neurologist to work on leg problems, and my urologist to follow up on bladder leaks. So maybe I won’t be as housebound as I thought.

Thank you all for your wonderful cards, thoughts, prayers, comments, emails, phone calls, gifts, etc. I really appreciated everything. Eventually I’ll be back to my usual chatty self on email and the blog. First I need to spend some time teaching my right leg how to work again. I plan to beat their 6-12 month time frame of full use. Until later – thanks again!!! Love, Jean

Day 18 & 19: Still There

Yesterday (Monday) afternoon the doctors told Jean she could go home. It was late in the afternoon, and no home care plans had been arranged, so she opted to stay overnight. Now the doctors want to keep her another day: she ran a fever last night and they want to perform a CT scan.

It seems the doctors were debating back and forth all day about whether or not to discharge her. Dr. Hanto was out of the city this weekend, so the debate was held over the phone and between his associates and residents. Late in the afternoon they decided it would be alright to discharge her. She would need to return on Wednesday for an appointment at Dr. Hanto's clinic.

Neither the nurses, the case manager, nor Jean thought she was prepared to leave. No arrangements had been made for visiting nurses, rehab, medical equipment for home (like a portable commode and a chair for the shower). So she insisted on staying overnight and had the support of the nursing staff behind her. Her nurse last night, Scott, filled out most of the paperwork that would help her get discharged in the morning.

She ran a fever last night (101 degrees). It's not uncommon to run fevers in hospital, either because of minor infection or because of all the antibiotics that are given to counter such infections. However, the docs are concerned that there may be infected fluid in the belly coming from the leak in her bladder. They want to perform a CT to see if this is the case. If there is fluid, they told her that the radiologist could perform a needle biopsy to drain the fluid. If it's not... well, we don't know at this point.

Jean and her folks are in the hospital, waiting patiently. OK, maybe patiently is the wrong word. We are... unhappy. But she's still in Room 1014 and you can give her a call if you want to talk to her. I'm sure she'd appreciate friendly voices.

Can't Catch a Break, Part 2

After a couple of days of progress, on Saturday morning the residents told Jean that the fluids draining from her belly were showing elevated levels of creatine, indicating leakage, probably in the bladder.

If the leak is small, it likely will heal on its own, but if the leak is large, it requires further surgery (again). Further surgery might mean more complications, as it has for the last week, and there's the danger of losing the bladder permanently. The news spoiled our Saturday to some degree. It helped that we had both sets of parents visiting us at BI during the day to keep us distracted.

On Saturday afternoon, Jean spent a couple of hours getting a CT scan. Dr. Johnson, an associate of Dr. Hanto, and some radialogists took a look at the scans over the weekend. Their conclusion is that the leak is small, located near or on the site where they repaired the bladder, and probably will heal on its own (hopefully).

We'll see Dr. Hanto on Monday. Jean might be discharged within the next day or two, sans further developments. When she is discharged, she'll go home with a foley catheter in her ureter, which they'll remove in a week or two after they check the healing of the bladder. And she'll be doing some rehab to get her right leg working again.

Jean is able to walk around with some independence now, and she can move her leg somewhat with great effort. The last couple of days have been so nice in Boston that she was tempted to take a short walk outside. Jean's parents stayed with her for much of the last few days. We moved them from the Best Western Longwood to Chez Gasbarro in Somerville. The Armbrusters drove from West Boylston to Boston to visit Jean for a couple of hours, which was awfully nice. My parents visited on the way home from New Hampshire. We had little time to celebrate my dad's and my brother Chris' birthday this weekend - so Happy Birthday, Dad and Chris!

As soon as we have news when Jean is home, I'll post it here. She might even write something herself soon.

Thursday and Friday

The last 2 days approached normal and nice. Not much happened: Jean's parents kept her company, she felt better and walked more, and her incision was sewn up on Friday afternoon.

If this is normal, or even boring, in a hospital, then we'll take it. Yes, we'll even take boring.

They sewed up her incision on late Friday afternoon, removing the Wound Vac which had been making sucking air noises for the last week. It was minor surgery that lasted only an hour. Jean's parent's experienced the tedium of waiting for the surgeon to get back to them to say she was fine. I worked all day and when I got to the hospital at 5pm, she was back in her room, as groggy and spaced as she usually is after surgery. But feeling good.

Some hopeful news: she can move her right leg a little! She discovered this on Wednesday night / Thursday morning. She can lift it slightly, move it from side to side, and pull it toward her somewhat. She can even get herself into and out of bed without assistance. It's very promising, but we're trying NOT to elevate our expectations. She'll still need rehab and it could be weeks before she regains complete mobility.

Ed and Regina have been well, living at Best Western Longwood, keeping her company, exploring the Fenway. She got a few visitors from work recently - Hara, Chele, and Terasina - and also had a visit from a Beth Israel social worker who also does reiki massage (type of massage where they don't touch your skin, yet very soothing). Gotten lots of neat cards and presents, which we'll call and send our thank-you's for, soon, very soon.

The docs says she could go home on Sunday or Monday. We play it day by day. That's our normal right now.

Wednesday: Better Day

It was a better day because Jean's parents arrived last night. She's also feeling better, moving more, receiving visitors. She might be discharged at the end of this week.

She's walking around more, still using the crutches and brace. She's trying to move the right lef itself a little more. Stretching and massaging it might help, but we don't know. This will be a matter to discuss with the physical therapists she'll see in an outpatient program.

Dr. Hanto said he'd probably remove the Wound Vac and stitch up the open wound at the end of this week. If she heals all right, without any sign of infection and fever, then she can go home this weekend.

Jean's parents arrived late Tuesday night. They're staying just across the street from the hospital. There's not much nightlife in the Longwood Medical Area. They're happy just spending the day keeping Jean company in her room.

She had other visitors too: Kate Silfen stopped by, and Mark & Yvonne Stephan spent some time in Room 1014. Mark found a Chipwich in the hospital's basement cafeteria, a miracle of foraging which Jean was very thankful for. She's also been taking and making lots of phone calls. And she's still finishing the chicken cutlets, which beat hospital food anyday.

She's reading her mail, e-mail and the blog every day - and sends a big thank to everybody. We're overwhelmed by love, affection, and support we've received.

Day 12: A Good Day

I arrived at the hospital today to find Jean was having a good day. That's no small feat.

A good night's sleep started the day right for Jean. That was followed up by doctor's and nurses being very attentive and taking more time to ask her about the leg. She said they spent time helping her walk around more and also trying to move the leg itself, to keep the muscles from atrophying.

They disconnected her from her IV and removed the foley catheter, which makes it easier for her to get out of bed and move around on her own. However, she still has the Wound Vac and a Jackson Pratt. She'd rather not go home with these still installed, but Dr. Hanto wants assurance that there's no infections or leaks. It may mean a couple extra days in the hospital - discharge sometime between Friday and Monday.

Kate and Paul visited us this evening, bearing Gray's Anatomy and Scrubs DVDs. I'll have to write about our fascination with shows like these, and House and E.R. It's a love-hate-morbid fascination thing. Jean tried her first real meal, Chris & Marianne's breaded chicken cutlets and pasta salad, which was yummy.

Jean's parents arrived last night, but we didn't see them. They went straight from the airport to the hotel, which is one block down the street.

If you're up for visiting or just calling, she's got the energy today and probably tonight.

Day 11: Monday Monday

Nothing much happened today. Which is good in our book right now. She'll probably be discharged at the end of the week.

My mom came for much of the day, so I worked in Waltham half the day and got some errands done. Dr. Hanto spoke with Jean for a little while, and Jean asked questions and expressed her concerns to him. If we haven't mentioned it before, Jean and I are people who tend to speak up, ask a lot of questions, and even complain. Dr. Hanto expects this now. Our previous doctors, Dr. Nauta (Jean's surgeon at Mt. Auburn) and Dr. Lange (her oncologist) respect her for it. The new residents are bewildered, of course: patients who challenge their recently absorbed medical expertise? No way!

Jean walked more today with the brace and crutches. She'd like to do more than just walking. She needs physical therapy to show her exercises and movements that might help regenerate nerves or at least keep the muscles in her leg from atrophying. Physical therapists visit her every day in the hospital, and she'll see an outpatient therapist as soon as she leaves, but she'd like to start sooner than later.

Keep calling. She's gotten many calls lately, of which she's grateful. If they arrive when she's asleep, or if it's a bad time, we'll let you know. But don't be afraid to get in touch. I've aso been bringing her cards and packages to the hospital, and she's really appreciated these things.

Chris & Marianne: The chili was mmmmmmmm.... And I think Jean will like the chicken cutlets tonight.

Day 10: Sunday

Thank you for your good wishes and thoughts. Jean talked with a few people yesterday. Feel free to call her during the daytime or early evening. If she's around she'll pick up.

Not much happened on Sunday. Mostly much-needed resting after yesterday. A physical therapist visited and Jean got up and walked around the floor a couple of times, using crutches. The open wound hurts more than the previous incision. They're giving her more medication to control the pain. The open wound drains into a machine called the Wound Vac, which sucks any infectious juices out of the cavity. They'll sew the wound in the next day or two.

She'll start on solid food again today (Monday). Probably get visits from new residents, who start their residencies this week. My mom is coming from Rhode Island to keep Jean company for the day while I'm at work. Jean's parents arrive tomorrow from Tuscon.

As we get more news, we'll put it on the blog ASAP.

Day 9: Kidney Failure

The tests they performed last night showed Jean's right kidney, the one they transplanted, had failed and died. They removed the kidney this afternoon during a brief surgery. She's recovering right now and will be fine.

Last night they performed a nuclear test on her kidney. They injected her with dye containing a harmless radioactive tracer, and followed the tracer using x-rays and scanners as it passed through her digestive system and into her liver, kidney, and bladder. They were looking for possible leaks in the right kidney and ureter, which had been transplanted. What they saw was the kidney was not processing ANY liquid. This was a clear sign it had stopped functioning.

Dr. Hanto quickly returned to the hospital today and scheduled a surgery to remove the kidney. If the dead organ is left inside the body, either the body will gradually reject it and induce sickness or an infection might have spread across her entire pelvis or abdomen. They wanted to remove it sooner than later.

The surgery lasted no more than an hour. As expected, the surgeons found the kidney had died. It's likely that one of the renal blood vessels had a blood clot and cut off the kidney. According to the doctors, this isn't uncommon in auto-transplants patients. It's also seen in cancer patients and in people who have had radiation treatment in their belly area; the radiation causes blood vessels to constrict or grow smaller permanently. We won't know anything definitive until the pathology reports come back.

Jean is doing fine, and is already back her room this evening. You can try calling. If she's awake enough and feels like talking, she'll pick up or will try calling peopleherself. The docs expect she'll be in the hospital until the middle or end of this week.

The only bright spot: the left kidney is still intact and doesn't appear to be compromised by the tumor or previous surgery. According to Dr. Hanto, she can experience long, healthy, normal life with one kidney.

But I can't express how disappointed we are. It's really the worst case: she underwent transplant, and it failed, leaving her with only one kidney. She's unable to use her upper right leg as a result of the transplant, and we don't know how long that will last. The loss of a kidney will affect her treatment options in the future. We're not at a point where we can start thinking about the future. We're just trying to get her through the end of this hospital stay. Then we'll work on the rest, whatever that may be.

I'd like to thank everyone, but today most of all Jean's parents and my parents, both of whom had a lot of patience and courage throughout the day. They kept us company and gave us immediate support. If I have any strength in my character or spirit, I owe it to my parents. And Jean feels the same way about hers.

Love & Peace to you all,
Pat

Day 8: Staying the Weekend

Lots of walking, some visitors, few doctors. Not a bad day.

Jean continued making progress - slow progress, sometimes too slow by her estimation. She walked around the 10th floor a couple of times using crutches. Her movement was good. Still no feeling in the leg, but she's learning how to compensate with the left leg for lack of the right.

She had a few visitors during the day - Frank stopped by, and so did our friends Mark & Yvonne. Late in the afternoon, the occupational therapist visited. She showed Jean how to get out of bed when you can't move one leg, and other useful tricks and general advice for welding crutches. By the time 7:00 PM rolled around she was tuckered out. Sleep is better, too, since they took her off the Decadron. They also removed her IV fluids - no more pole to push around. And they took one of the JPs (Jackson Pratts, not Jamaica Plains).

Dr. Hanto wants her to stay in the hospital another couple of days. The surgical wound is healing nicely, and the kidney and bladder appear to be working. But JUST IN CASE. He's running more tests to make sure the kidney is functioning properly: not just outputting liquid, but removing the poisons from her body like its supposed to.

She's definitely more confident today than anytime in the previous week. There will still be issues getting to the bathroom. That's been an issue for the last few years. The leg is a challenge thrown on top of it.

I'm writing this entry from 1014 Farr, where the latop is connected to the internet via modem. There's a wireless network in the hospital, but it's for medical purposes, so I'll behave and won't hack into it. Jean just came back from a nuclear medicine test - they inject a dye into her and see if the kidney processes it, or if there are leaks or other problems. I'd ask her to type something, but she's asleep.

Day 7: Bracing Ourselves

Day 7? Really? Has it been that long? I guess it has, since I'm tired enough to be writing terrible puns like this headline.

Jean saw only a couple of doctors today. Dr. Hanto visited and said the healing of her kidneys and bowel seemed to be going great. He understood her frustration about the leg. And she saw some help with that today.

Physical therapy brought Jean a brace which locks her knee into place, keeping her leg nearly as straight as a ruler. When strapped in tightly, the knee can't buckle and she's got more support. She still needed a walker to move, but she moved twice as fast with much less effort. She also tried a couple of steps.

We're considering whether in-patient rehab (staying at a rehab facility) or out-patient (being at home and going to the facility) is the better choice. The therapists and health insurance company, of course, also will determine what type of treatment she gets, but we have a say as well.

The advantages of home is that it's our comfort zone. If she's not moving, she can be doing the activities she wants to do. (Mostly watching Gray's Anatomy - what is it with these hospital shows?) Her parents will be here to help her and transport her.

The disadvantages of home: stairs, about 8, to get into the apartment. The doorways are small and the bathroom is small (nice but small). Using a walker inside our place might not be feasible.

Another day closer to discharge, which is... ? Maybe this weekend. We take it day by day. Time passes surreal in a hospital. Lots of tedium (lying in bed on a drip), punctuated by disappointments, bland hospital food, and a little progress every day.

Day 6: Going Forward

We've had a lot of grief and exhaustion lately. Jean's right leg hasn't improved and she hasn't been sleeping or resting. But we've also got a lot to be grateful for.

Jean got a semi-good night sleep. A kind doctor and nurse gave her some sleeping meds to help her get over the wacky, hyper effects of Decadron, the steroid she's taking to soothe her nerves (oddly enough). She was still groggy this morning, but, thanks to some power naps, she went on a couple of walks. Fewer doctors today, which meant less prodding, which meant more rest.

She started seeing visitors and this really cheered her up. My Mom came from Rhode Island for the day. Our social workers from Mount Auburn, Annabelle and Beth, stopped by for a couple of hours. And my brother Chris and his wife Marianne stopped by. Together, the four of us walked down the hall with Jean for several hundred feet, her longest distance yet.

If you're interested in visiting, or calling, just give Jean a call at the phone number on the Visiting Information page. Don't be shy: if she's sleeping or out of the room, she won't answer (there's no voicemail).

Before I mention anything else, I want to thank everyone for the cards, gifts, and e-mails that we've received over the last few days. I'm terrifically grateful and promise to thank every single one of your personally.

Her surgical incision is healing nicely. She's eating solid foods, drinking lquids, and eating cookies. And she doesn't feel the pain she felt before in her kidney and ureter. There's no question that Dr. Hanto and his team did a great job with the surgery. If not for the problem with the right leg, she might be discharged by now.

We had a long talk with Dr. Hanto today, explaining our frustration with the state of the leg and just venting our disappointment. It's taken us a few days to adjust to the shock. Now we're starting to think about how to deal with it. Dr. Hanto is working with the Neurology and Physical Therapy team at Beth Israel to come up with a plan for discharging her. She'll likely get physical therapy for at least a few weeks. Right now she's still unable to get out of bed or move without asistance.

We don't know the details. Neither do the doctors. We're all just figuring this out. One of the most frustrating human experiences is a group of good, concerned people (doctors, nurses, patients, family) working against forces they can't control and don't know the outcome of. Jean's had this experience with her cancer: rare, no protocol to treat or cure, and an uncertain future. The damage of her leg nerves threw us for a loop over the last few days, but we're gradually regaining our balance and resolve. The same energy that fed Jean's frustration and anger is the same energy that will drive her will and determination to walk and be independent again. Actually, she's always pretty independent.

Day 5: LONG Day

I WILL POST INFORMATION ON VISITING AND PHONE CALLS LATER TODAY (Wednesday). Highlights of Tuesday: Insomnia, Doctors, Slow Walking, More Doctors, Solid Food, Flocks of Docs, X-Rays, MRI, and a Turkey Sandwich.

Today was a 15 hour active day for me. Jean's day was longer.

She didn't sleep well the previous night. The docs are giving her Decadron, a steroid which reduces inflammation of the nerves. Unfortunately, it also wires you like a monkey on espresso. Jean took Decadron to minimize th side effects of Erbitux, so she knows it well.

She tried to catch a nap today, but every 30 minutes a doctor would show up. Surgeons and residents from Dr. Hanto's team, anesthesiologists, orthopedists, neurologists. Mostly they checked on her leg. Most repeated the same tests and asked the same questions. "So, you can't move your right leg?"

Because she was so busy, she only walked a little today, not as much as we'd like. Obviously, Jean's been through abdominal surgeries before. She knows the quickest way to heal, feel better, and get out of the hospital is to get up and walk up and down the halls. The bum leg is truly a handicap in that sense. Even for the simplest trips, like crossing the room, she needs to call 2 nurses to help lift her legs, maneuver out of bed, clamber into the walker with her IV pole and catheter, and slowly cross ten feet of space in three minutes, one nurse spotting her and the other pushing her IV pole.

They took her down for x-rays, which lasted an hour, and a second MRI, which lasted three hours. The x-rays showed there were no broken bones or damaged muscles in her knee and upper leg. The second MRI was of her lower back, to determine if there were any signs of internal bleeding, spinal hematomas, or other crippling problems. The results were clean: no damage to the spine.

Which doesn't explain the leg. According to the neurologists and Dr. Hanto, the most likely explanation is that a retractor may have compressed a major set of nerves controlling muscles and senstivity in her quadruceps. If this is what's wrong - and there's no guarantee - then there's a possibility the nerves will regenerate. How long will it take? What will we need to do? We'll work with the doctors to figure it out. She's made great progress on healing from the surgery - kidney and bowel are starting up and sound good. It's the weakened right leg that's frustrated all of us.

When Jean got back from the MRI, it was 8:00 PM. The kitchen had closed - no hot dinner! Also, we had missed her cousin Noreen, who had kindly stopped by for a visit. Sorry Noreen! For any potential visitors: I recommend calling first, not for permission as much as to make sure Jean hasn't been shuttled off for another scan!

Finally at 9:00 PM the on-call resident and nurse took pity on her. They got her a cold turkey sandwich, gave her some sleeping aids, and agreed to give her a "do not disturb" order for most of the night. It was kindness after a long day. Everyone of us could use a good night's sleep.

Thanks for staying with us!

Day 4: Can't Catch a Break

Click on Continue Reading for Jean's address at the hospital. There's other news, too. Good News and "Not So Good But We Can't Commit to Anything Until We Do More Tests" News.

Jean's address at Beth Israel is:
1014 Farr Building
Beth Israel Deaconness
185 Pilgrim Road
Boston, MA 02215

Phone Number: 617-632-1688

She'll be here through the end of this week at least. If you think your card or package might not reach her that soon, you can always send something to 22 Walnut Road, Somerville, MA 02145. Also, if you have any questions you'd like to ask us, click the Feedback button at the top of page and fill out the form. It will send an e-mail to us to which we'll respond within a day.

The Good News. Jean is a healing well from the surgery. Her kidneys appear to be functioning fine, digestion is making good sounds, and in general her overall health is better. She's still groggy, but that's mostly because the doctors don't let her nap without a visit every 30 minutes. Dr. Hanto thinks she's making great progress. She'll start drinking full cups of clear liquids today. If she reacts well to liquids, then they'll give her solid food in another day.

The Not So Good Etc. The right leg. Jean had severals visits from neurologists and spinal doctors over the last two days. She had umpteen sensitivity tests performed on her leg. The physical therapists took her out for a couple of walks, but there's been no change in the condition of the leg.

One of the hospital's chief neurologists visited Jean this afternoon. He gave her the umpteenth-plus-one test and said it was likely that the nerves controlling the quad muscles on the right leg had been compressed, damanged, and/or cut. If there's minor compression or damage, then the prognosis is a moderate recovery over several weeks, using physical therapy and steroids to regenerate the nerves. If there's major damage or the nerves were cut, then it might take several months of therapy, drugs, and walking aids. And there's no guarantee of full regeneration.

Lots of "ifs" and "mights" in this territory. We're used to hearing it - doctors for valid reasons won't confirm any diagnosis or prognosis unless there's firm facts - but we never like hearing it. They're going to perform another MRI on Jean tomorrow (Tuesday), an unpleasant but necessary experience. In a couple of weeks, if the leg isn't healed, the neurologists will also perform an EMG (electromylogram) test on the nerves in her leg to see what's regenerating and what's damaged.

Add neurology to the list of other fields we're becoming amateur experts in: oncology, gastrointerology, dermatology. Now is the time for me to get my medical degree, if only Organic Chemistry 101 didn't bore me to tears.

What caused this? Nobody knows. Surgeons often point to epidural taps as causing some of these problems. Anesthesiologists point to surgeons for cutting and retracting (holding back skin and internal tissues from the surgical opening), placing pressure on the nerves or slicing them apart. Of course, there are a dozen other possible causes that nobody can pinpoint with certainty.

We're disappointed - and we're determined to see Jean past this hurdle. Right now we're wandering on the frontier of surgery and medical science, where even doctors scratch their heads. We've got good doctors and nurses who are working very hard for us. We've got great support from our families, friends, and colleagues. We'll face the facts - for her kidneys, good facts; for her leg, sucky. And we'll rise to the occasion the best we can.

Day 3: On Farr 10

Farr 10 means the 10th Floor of the Farr Building, the main patient residence of Beth Israel Deaconness' West Campus. Jean slept for most of the day, which is good, because she didn't get much sleep the previous two days. There was some progress today. Mostly it was a day of rest.

A physical therapist visited Jean this morning to help her out of bed. The nerves connected to the muscles in her upper right calf leg and her lower back above the leg are weakened. These muscles also help the knee maintain strength and balance. Since they're not working on the right side, every time Jean tries to stand, walk or move the leg significantly, it collapses under her. With the aid of a walker, the PT got Jean out of bed and into a chair for a little while.

Dr. Hanto visited shortly afterward. Her incisions are healing, her kidneys are working OK, and it appears her digestion is running. She's still on IV fluids, but she's now allowed small sips of clear liquids.

Mostly all the doctors are worried about the right leg. Dr. hanto believes the epidural either pooled its fluids in the lower right hip, deadening the nerves, or there's some kind of bleeding from the epidural or the surgery that caused compression on the nerves. When nerves are compressed, they stretch, and when nerves stretch, they become inflamed - and very unhappy.

Yesterday's MRI came back fine - no sign of bleeding or infection where they put the epidural. The spinal surgeons would like another MRI, but we're going to wait another day to see if things improve. If they don't, it means an MRI and probably some sort of physical therapy during or after her stay.

Meantime, rest. Hopefully Jean will have some more energy tomorrow to make some phone calls and talk with people. I'll post her address at the hospital tomorrow. If you wish, you can also send cards to Walnut Road, where I can pick up the mail. And I'll let you know when she's ready for visitors. She'd like to see people. She just wants to be awake when they come.

Day 2: Scans and Corrections

Busy day. Here's the low-down. Jean FINALLY made it from the PACU (or Recovery Room) to her patient's room on the 10th Floor - at 7:00 PM this evening. What took so long? Since this morning, she had an ultra-sound and an MRI. She's never had an MRI before. You know that's special.

She didn't sleep well last night due to anesthesia wearing off. In fact, she could hardly nap for more than 10 minutes without someone poking, prodding, asking questions, running an ultrasound reader, or putting her in a scanning machine. She should have gone to her patient's room this morning, but the best laid plans...

The epidural controlled the pain nicely, but there was a problem. Jean can't lift her right leg or kick it. She can move it in other ways, bend at the knee, wiggle it, but can't keep it straight and lift it. The anesthesiologists said it wasn't uncommon for these type of side effects to occur.

But Dr. Hanto is working this weekend and didn't take any chances. Her ordered ultrasound and MRI (magnetic resonance imaging) tests to determine if there were any rare disorders, like compressed nerves caused by bleeding or hematomas. As far as we knew at 8:00 PM, all of the tests were clean and normal. Hopefully this will wear off, but we're going to keep looking at it. They also removed the epidural and put her on regular pain meds.

We had good nurses today, and, of course, Dr. Hanto and his team. Mostly quiet at Beth Israel today, at least from what I saw. For several hours, Jean was the only patient in the PACU.

She's sleeping tonight, finally. She probably won't be taking visitors tomorrow, but I'll get everyone her room number, telephone, and visiting hours just as soon as she gets her rest. Because she's in the Transplant wing, where many patients are protected from even the slightest infections, they don't allow gifts like flowers or food. Other than that, they seem pretty cool about visitors. When I know more, I'll let you know.

P.S. - I've been printing out these blogs and the comments everyone has posted and have been reading them to Jean. They really cheer her up. Whatever I paid for this website has been earned back with interested. Gracias!

CORRECTION: Yesterday I wrote that Jean now has two kidneys on her left side. For some reason, the anesthesiologists, nurses, and even some of the scan technicians all thought the right kidney had been moved to the left side. However, when the ultrasound technician was scanning for the second kidney, he couldn't find it. All of us were confused and a little worried, until Dr. Meng, Hanto's chief resident, walked into the ultrasound lab. "Why are you looking on the left? It's on the right." Um, we thought you guys moved it over. "Yeah, but we moved it down further, right next to the bladder." He would know, he did the moving. When I looked at my written notes from talking with Dr. Hanto last night, I actually wrote down "right". Yet most of us in the PACU thought it had been tossed laterally. We couldn't figure out why it was stuck in our heads. Maybe it sounds cooler. "Two kidneys on the left."

Surgery Is Over!

Jean was in surgery from 8:00 AM until 8:30 PM - 12.5 hours. It's the longest surgery she's ever endured. Dr. Hanto removed a tumor from near her bladder, cleared an enormous amount of adhesions, and moved her right kidney from the upper right abdomen to the lower left pelvis. She's now recovering on the 10th Floor of the Farr Building at Beth Israel Deaconness.

We arrived at Beth Israel's Clinical Center on the West Campus at 6:00 AM this morning. (Yawn...) They checked in Jean fairly quickly and had her prepped by 7:30 AM. The staff and nurses were very capable and friendly, which put her in a good state of mind. The epidural helped too.

My Mom came up from Rhode Island at 10:00 AM and kept me company throughout the day. One of our social workers, Frank McCaffrey, also stopped by to lend support. It was a very busy day in their OR. We were far from the only family waiting patiently on St. Patrick's Day.

One of Dr. Hanto's nurses, Wanda, kept calling me every hour promptly to update me on the status of the surgery. Dr. Hanto and his team worked cautiously. As he explained later, there was a lot of scar tissue and adhesions created by previous surgeries, radiation, and chemo. These adhesions created webs which latched onto everything - organs and blood vessels. The vessels were the trickiest part: dozens of them had to be disentangled from the adhesions before the kidney could be removed and then re-sewn into the new location.

Dr. Hanto spoke with me at 8:30 right after the surgery. It was a much longer day than he anticipated, but they did what they wanted to do: cleared the adhesions, removed the tumor and compromised tissues with clean margins, and move the right kidney to the lower left side. Jean now has two kidneys on her left side! He expects she'll be in the hospital for the next week. Based on recovery from previous surgeries, she seems very strong and likely to recover without complication.

I saw her shortly before I left the hospital at 10:30 PM. She was awake and in a good mood. The credit for that goes to a great surgical team, the anethesiologists, and of course, the epidural.

Thank you everyone for your good thoughts and wishes! I'll try to reach some of you by phone tomorrow. I'll also try to have information on the site tomorrow about visitors and phone calls and etc. She'll want both.

Pat

Jello and Water

Not even bread…I started the liquid diet today, which really isn’t all that difficult for me and knowing that it’s the only prep I need to do will make it a breeze. I did have a fabulous meal last night as my last pre-surgery food – we decided to visit our favorite local Mexican restaurant which has never failed to impress us and last night was no exception. Then we headed off to the city and the Pogues concert. It was exactly as I expected it would be and I’m really glad I got to go.

Yesterday I spent a few hours at Beth Israel doing my pre-surgery testing, bloodwork, history & physical, and meeting with the anesthesiology department. As with my last surgery, I’ve decided to go ahead with an epidural. I mentioned to them that I managed to knock the last one out in only a day, so they said they would make note of this in my chart and see if they could find a better placement location. Then Pat and I met with Dr. Hanto to go over the final plans for tomorrow. He’s been doing lots of research and talking over the past few weeks. He’s pretty sure that he won’t be able to place the right kidney in the lower right abdomen because of masses of scar tissue, so instead he will place it on the left side. I won’t notice anything different – however I can have some fun when I have ultrasounds and CT scans in the future if I don’t tell them ahead of time that both kidneys are on one side.

Dr. Hanto talked with Dr. Karian and got a good idea of where the tumors are in the ureter and is hoping to avoid taking any more bladder, but we know that it is a possibility. We had a few more questions which he answered and then we left feeling confident and ready for Friday.

We did take a few minutes to check out Farr 10, the floor where I will be recovering. It has some great views of downtown and we’ve already put in several requests for a private room. We’ve heard good things about the nurses and know that I’ll be in good hands.

That’s it from me before surgery. I’ll post again after I’m home. In the meantime Pat will post daily updates, probably late in the day.

The Countdown Begins

Four days to go. Everything is set for surgery on Friday, March 17. The two main doctors operating on me will be a week back from vacation, which means they should be well rested and ready for the challenge of my abdomen. It’s always a surprise to anyone who operates on me to see what is going on once they open me up. We’re hoping there will be no “surprises” this time and they docs will see exactly what they are expecting.

Wednesday is pre-test day and I’ll be spending most of the day at Beth Israel. I have several appointments and lots of paperwork to fill out before Pat and I meet with both Dr. Hanto and Dr. DeWolf, the urologist. We’ll go over some final decisions with Dr. Hanto and make sure that Dr. DeWolfe is on the same page as us as well. We need to arrange for a private room for recovery as it’s not fair to anyone else to try to share a bathroom with me. I would really be uncomfortable in a semi-private room, especially since my bowels are not being operated on and therefore will be working as usual meaning at least 8-10 trips a day to the bathroom. Pat can vouch for me – when I have to go, there better not be anything in my way and a bed pan just isn’t even an option.

We need to make the final decision about pain regulation – right now we are leaning towards epidural, which worked great after my last surgery until I knocked it out on day 3. However, I do like the control of a PCA pump and being able to take pain meds when I need them and not have them continually coursing through my body. We’ll see what the anesthesiologist recommends. Also I want to be certain that Dr. Hanto removes my old incision and doesn’t just cut next to it, because the more scar tissue he can remove, the better. Lastly, we assume the tumors will be sent to a tumor board after their removal, but I want to be sure that Dr. Lange is on that board and that the recommendations from it will be forwarded to Dr. Nauta at Mt. Auburn. I’ll do my immediate follow up at Beth Israel, but then my daily care will switch back to Mt. Auburn.

Pat will be posting the rules and regulations of the Beth Israel Transplant center after I am assigned a room, but as a warning I do know they are very strict with visiting hours (11am to 8pm) and gifts (no flowers or outside food). However my hospital recovery should be short and I hope to be home in less than a week. Then visitors, flowers, and food are all welcome at any time!!

I’ve spent the last week getting myself mentally prepared for the surgery as well as getting the house and my wardrobe ready for my at-home recovery. Lots of spring cleaning, some new comfy lounging pants (ones that fit and don’t fall right off like the ones left over from my last recovery), and lots of comfort foods. We’re about ready and the rest of the week looks to be busy as well and Friday morning (I have to be there at 6am, though the surgery is set for 7:30am) will be here before I know it. At least I have some fun to look forward to between now and then…two more days to the Pogues….

I may have time for an update after Wednesday’s meetings. If not, Pat will be updating the site on a daily basis beginning on Friday. Most likely the updates will be posted in the evenings, depending on the availability of wireless access at Beth Israel.

Thanks again to everyone for your love and support.

Finally, some news to share!!

First I wanted everyone to know that I am home after my recent 30 hour stay at Mt. Auburn Hospital. Official diagnosis: ruled out small bowel obstruction. Mostly likely cause of problem: stomach bug. Unfortunately because of my history something as simple as a stomach bug can have me land in the hospital (Many of you may remember my two week hospital stay courtesy of Salmonella poisoning). Once I start down the path to dehydration there is very little I can do to get ahead of it and that’s what happened this week. I couldn’t get any food or liquid past my lips and despite this I still had diarrhea, so in a mere 12 hours I got completely dehydrated and was in need of an IV of fluids - which I received several times over. I went in through the ER so it took a few hours to convince them to call Dr. Nauta’s office, but once they did I was admitted and they poked and prodded until there was nothing left to poke or prod. I have nothing against the ER docs at Mt. Auburn, but it will take me twice as long to get them to understand my history than if they just call Dr. Nauta’s office. His team is aware of my history and don’t put me through unnecessary tests and don’t ask me umpteen times “is there a chance you could be pregnant”. Next time I have to go the ER route I think I’ll wear a t-shirt that says “No, there is absolutely no chance I could be pregnant” with a footnote that reads “Nauta, Russell, Operative report May 30, 2002, complete hysterectomy, among other things….”

But onto the real news I wanted to share. My surgery is set (tentatively) for March 17. Let’s hope the “Luck o’ the Irish” is with me and that my Ryan genes are up for a good fight. I’ll also make sure that none of the doctors are Irish or that they hold off on their Guinness intake until after the surgery. I say “tentative” because Dr. Hanto has not yet called to confirm this date. I talked to his nurse this morning and she said this was the date that seemed to work for everyone and was about 90% sure that it would happen. I will let you know if it changes or when I get the final, absolute confirmation. One reason for the delay was a problem with Mt. Auburn providing my CT scans for Dr. Hanto. Another is that there are several doctors involved and it sometimes is difficult to get all schedules coordinated. I would rather wait and have the team the Dr. Hanto wants than push for a quicker surgery. They assure me that my brief hospital stay did not delay the procedure at all. I feel OK right now and should be able to make it another two weeks.

I’m officially on disability for work as of March 1 so I will be spending the next two weeks mentally preparing for what lies ahead and getting my house ready as well. I know we’ll have a fair amount of visitors and overnight guests during my recovery, so I need make sure we have enough floor space in one room to put down the aero bed. This kind of busy work relaxes me or at least gives me an outlet for my stress. I hope to find an outlet soon because it’s currently 2AM and I’m wide awake despite taking something to help me sleep. Neither Pat nor I can handle 2 weeks of this kind of behavior.

I’m actually glad for this date for several reasons. First, I can actually eat cake with Pat on his birthday this weekend and we can celebrate his day by putting the surgery/cancer stuff down for a day. If only I could think of a “material” gift to get him rather than the spiritual gifts he has asked for (If I knew how to beat this cancer I’d give him that as a gift every year for birthdays, anniversaries, Christmas, Flag Day, Arbor Day, etc.) I do love the fact that he asks for this every year almost as much as I love him.

And reason two: Several months ago we got tickets to see The Pogues a band I’ve loved for decades and never thought I would have the opportunity to see live, especially because I thought Shane McGowan was dead. If I would have had to miss this concert it would not have been the end of the world, but given Shane’s history there’s a good chance he won’t be around for their next tour. So this is one less thing I have to “miss” or “give up” because of the cancer and that actually makes me really, really happy. And Pat will tell you, happy is not on my list of emotions these days.

All righty now. I’m actually feeling a wee bit sleepy and I’ve caught up on all my emails so I think I’ll try to sleep again. Fortunately I don’t have to get up in the morning so I can sleep as late as I want – woo hoo!!!

Thanks for the prayers and well wishes. I can feel them all coming my way. Take care everyone.

No news yet

It’s Monday afternoon and I’m sitting at home with both my cell phone and the home phone close by. Last week our home phone went on the fritz and no on could call in, but we didn’t find this out until Thursday night. It wasn’t fixed until late Friday afternoon so we aren’t sure what if any phone calls we missed, so for backup we now make sure that the doctors’ offices have both home and cell phones on record for us. Late Thursday I spoke with the nurse from Dr. Hanto’s office and arranged for copies of my CT scans from Mt. Auburn to be burned to CD for Dr. Hanto to pick up Thursday night. I was very busy at work on Friday and never got around to calling to check in, so by late Friday night Pat and I were resolved that we wouldn’t hear anything further until today.

We were proven wrong however, and it’s just one more reason why I am feeling confident with our choice. Dr. Hanto called me at home on Saturday evening to let me know there had been some problems getting my CT scans and he was unable to connect with his urologist so he would not have any more information for me until Monday. He also still wanted to talk with Dr. Nauta and Dr. Karian. I was floored – it was 6pm on a Saturday night and my surgeon was calling to tell me he was sorry he hadn’t called back sooner. Whoa...I didn’t get any information, but at least I know what the hang up is and I know that he is covering all his bases. This surgery and I are so a-typical that he wants to make certain he has every piece of information before cutting me open. I’m certainly not upset with that.

I actually spoke with Dr. Nauta on Thursday to let him know that Pat and I hat met Dr. Hanto and had really liked him. Dr. Nauta sounded relieved – guess I’m hard to please sometimes (smile). He gave me some more information about why he chose to go this route this time – seems that Dr. Nauta is looking ahead at my future surgeries, which might include a small bowel transplant something that Dr. Hanto would be perfect for. So Dr. Nauta wanted him to begin to get familiar with my insides. Good to know – though hopefully a few years down the road. Dr. Nauta also indicated that while he felt I was in more than capable hands, he would stop by the surgery if he could, otherwise he would meet with me and Dr. Hanto afterwards for the follow up. I really am lucky to have people like this on my side.

We talked at length with Dr. Hanto about what he plans to do. Fortunately there were some diagrams on the walls and he was able to show us exactly how he would go about disconnecting my kidney and why it was the sort of procedure done by transplant or vascular surgeon (involves disconnecting and reconnecting to 2 main veins). He also indicated that he felt the tumors came from the mass of scar tissue at the base of the bladder. Dr. Nauta is still going with the, tumor on outside of ureter, has penetrated through. We’ll find out for certain when they open me up. Dr. Hanto knows that he has to be vigilant in removing the scar tissue by the bladder, but he is concerned about having to remove more bladder. I’ve already only got half a normal bladder, and he doesn’t want to leave me with something so small that it’s of no use. However I expressed my desire to avoid a uretocomy (basically bag on the outside of my body to serve as a bladder.) He listened to me when I explained certain quality of life issues that are important to both Pat and I. Hopefully it won’t be an issue.

I’m spending this week getting myself mentally prepared for the surgery and getting stuff ready around the house. Finding my comfy pants (very loose waist for over the incision), stocking up on cling wrap to cover the incision during showers, getting some mindless reading stocked up, and video games dusted off, chick flicks saved to DVD. Loading up some new tunes to the iPod, puttering around and generally trying to ward off the nerves. The good news is that I don’t have to do bowel prep before this surgery so that means I won’t spend the night before crying on the floor of the bathroom. Instead I get to eat jello, broth and lots of clear liquids the day before. This also means that I should be able to eat after surgery and not have to spend weeks on TPN waiting until I pass gas before eating anything. Wow – what a difference for me. Hopefully will make the entire process more bearable.

OK, now that I’ve babbled on long enough its time to find a new way to calm my nerves. I’ll post the surgery date as soon as its set – my vote is for March 7. This way I can help Pat eat his birthday cake on March 5th.

The latest

Pat and I met with Dr. Douglas Hanto at Beth Israel Deaconess in Boston yesterday. He is Chief of the Transplant team and was chosen by my general surgeon to perform this surgery. We spent almost an hour with him and walked out of his office feeling very confident with our decision to sign the surgical consent form and move forward with him and his team. He asked us the right questions and he listened and responded when we asked questions. We were very comfortable with him and felt that he definitely has my best interests in hand and knew that what he was signing on for was not a typical auto-transplant procedure. He has not treated any cases of appendiceal cancer, but since he is a transplant surgeon that’s not unusual, especially since this cancer doesn’t tend to attack the kidneys, liver, or other organs that usual require transplants. However, he had done his research and knew that it was almost unheard of for this cancer to appear inside of an organ without penetrating from the outside.

He’ll be bringing a urologist onto the team and once they both view all of my CT scans and check their schedules we’ll get the surgery date. Right now we are talking about next week. We don’t waste time around here. I’ve officially notified work and Friday, February 24 will be my last in office day for at least 6 weeks. I’ll be spending most of next week preparing for the surgery – both mentally and physically (pre-testing, meeting with the urologist, checking out the transplant ward, etc.) He estimated about 5 hours for the surgery and 5-7 days in the hospital. Since there is no bowel involvement, I actually believe that I may be out of the hospital in 7 days. Then I’ll spend at least 4 weeks recovering at home. Dr. Hanto has tentatively decided to use my current incision as his point of entry (that zipper idea is sounding better and better, though I will get another inch or two tummy tuck). While most kidney transplants are done through the back in my case there is a lot of work to be done up front preparing the abdomen for the kidney, so he felt this was best. He’ll go in and remove scar tissue and decide if the kidney is going to be placed in the lower right abdomen or the lower left. He said accessing my kidney from the front won’t be a problem because I’m so thin (guess there are advantages to my weight loss…)

I will give more details about our meeting in a later post – just wanted everyone to know that we’ve made some progress.

Here we go again

I’ve delayed writing this entry because I wanted to have some specific information before sharing the latest news, but it may be a few days before I have the exact details, but I wanted to let everyone know where