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 Lot to Think About

I wanted to write a brief post to let everyone know that my appointment last Wednesday with Dr. Goodman went very well. Pat and I liked him immediately and spent two hours talking with him. He is new to Boston, but has trained under the PMP specialist in Pittsburgh (Dr. Bartlett) and then practiced on his own in California before being recruited to Boston. He is at Tufts New England Medical Center which is a huge hospital complex in downtown Boston. Dr. Goodman reviewed my most recent scan, immediately diagnosed a recurrence and after getting the truncated version of my history, jumped into what his thoughts and plans for me would be. He was personable, compassionate, and not intimidated by the amount of knowledge that Pat and I have about this disease. He believes in sharing information, thinks the bulletin board support group I belong to is a great resource and knows that the Internet can be useful tool. I have no doubt he will check out the URL’s that I gave him, especially when I said I heard about him via a chat room – it’s better PR than any hospital can provide!

Pat and I left the hospital with our heads spinning. We have a lot to think about and I will spell it all out later. I took a few days off from thinking about this stuff to relax and clear my head. I am actually in the midst of a busy week at work so I won’t be posting a follow up until Friday at the earliest.

I do have one small request – send some prayers, well wishes and good thoughts my way next Monday, the 28th. I saw my urologist Dr. Karian on Wednesday prior to my appointment with Dr. Goodman (what a fun day that was!!) and he did a scope inside my bladder. Unfortunately he did not have good news for me. He saw ‘something’ inside the bladder which we are quite certain is tumor. This means that whatever is on the outside of the bladder has somehow penetrated the bladder wall. Typical PMP cells are not invasive and do not penetrate organs, they strangle from the outside. We know that my cells are not typical though since they were found in my urether during my last surgery. Dr. Karian would like to biopsy this thing to confirm that it is the same pathology. I mentioned this to Dr. Goodman at my appointment and without seeing anything he has no doubt about the pathology. He said it can’t hurt to check it out though. The biopsy procedure is relatively simple though somewhat painful and therefore it is done as day surgery. I am having it done on Monday, January 28 at Mt. Auburn. It involves general anesthesia - the biopsy will take less than an hour, but it will take me 2-3 hours to wake up from even that small amount of anesthesia!. We don’t anticipate any problems, but it never hurts to say a few extra prayers.

Why am I not surprised?

That many doctors go on vacation in early January?? I’ve run into this more than once, but since none of them told me this when we talked last week or made other arrangements for me, I take it to mean that I’m not an emergency case and can wait until they get back to make any decisions. Sounds logical to me.

I have a list of doctors that I needed to speak with this week. It’s intimidating to look at your “to do” list on Monday morning and have the first 5 line items be
Call Dr. Nauta
Call Dr. Karian
Call Dr. Abner
Call Dr. LaMont
Call Dr. Lange

Needless to say I was not in a hurry to make ANY of these calls and I procrastinated until Tuesday. (On Monday I went out and bought myself an appointment calendar, figuring I will need to start keeping track of all these things and I always forget to update my Yahoo calendar, I do best with pen and paper. Plus it was 75% off and it was The New Yorker Dogs calendar, with the first cartoon being a picture of a man in a hotel room on the phone saying “That’s nice honey, now would you put the dog on?” Of course in order for this to be realistic, it would be me in the hotel room asking to talk to Cooper and not Pat).

Getting back on track - I immediately assigned myself one phone call per day, for the rest of the week so that I did not feel quite as overwhelmed. And I started with the easy one - Dr. LaMont who is my gastro and whom I needed refills from so it wasn’t really related to my recurrence. I did fill him in on the latest, just in case he had any thoughts about something that could be done to help my diarrhea while they are inside of me taking care of the tumor. He didn’t but he said he would keep thinking and keeping looking. One phone call down, 4 to go.

I learned that Dr. Lange was out, and since I really didn’t need anything from him other than to update him on my progress (or lack thereof) that was 2 calls I could cross off. I called Dr. Nauta on Thursday and was told he was on vacation – which explained why I had not heard back from his assistant about the MRI he wanted me to do. Well, the ball is now back in his court to call me back next week. Being that I skipped Monday, I decided I could make 2 calls on Thursday. I called Dr. Karian’s office, where I learned that he had been waiting to hear from me – rather than dwell on the miscommunication, I spoke with his receptionist and she got me set up with the only available appointment next week for my cystoscopy – Wednesday. I felt as though I had finally accomplished something so decided to put off any other phone calls until Friday at the earliest. Pat is gone for a quick business trip so I may reward myself tonight by eating dessert first.

I’ll be having a busy day on Wednesday as I now have to go into Mt. Auburn in the morning for the cystoscopy, after which I’ll pick up my medical records before heading across town to Tufts New England Medical Center where I have an appointment with a PMP specialist, Dr. Martin Goodman. He’s new to Boston so I figured I need to pay him a visit and see if he has anything to offer – it’s only an hour from home, not like going to DC or Omaha. I’m not expecting to hear anything startling, but it’s always good to have new set of eyes review my case.

And that’s all from here. I’ll call Dr. Abner, the only name not crossed off of my day planner, tomorrow perhaps and see if proton beam radiation is an option for me. At least they have a machine at Mass General so once again I would need only go across town instead of across the country, if it’s even worthwhile for my type of tumor. Tomorrow is soon enough to delve into this.

Until later.
Jean

Technical Difficulties

We have been experiencing some outages with our web hosting service lately and are aware of the down time recently with the site. We are looking to move the site, but everything will be behind the scenes, so you’ll still find us at www.gasbarro.net .

Now that the site is back up, I have some news to share. I heard back from Dr. Nauta last week, and the first words he said to me were “I’m not ignoring you!” As we suspected he was consulting with other doctors and wanted to have at least the start of a plan before talking with me. Our conversation covered many bases, but to summarize:

1. He is not certain what he is looking at on the PET scan. He had not viewed the CT scan or the prior CT scans to compare the changes in the “growth”, but he planned to go and look at prior reports and scans to get a better picture of the situation.

2. Per Dr. Nauta: Dr. Karian (my urologist) has been informed and he also viewed the PET scan. He agreed with Dr. Nauta that it’s hard to tell what is or is not growing on my bladder and that further investigation was needed. He would like me to get a cystoscopy, which is when they insert a camera into my bladder. I’ve had this done dozens of times and it’s not a bad test to have. Dr. Karian thinks if this is a tumor “on” the bladder he might see evidence of that inside the bladder in the form of indentation or pressure (as I am not having any bladder related symptoms yet…) I still haven’t talked to or touched base with Dr. Karian.

3. Dr. Nauta wants me to have an MRI done and he wants a neurologist brought in if in fact the twitching and muscle spasms I am experiencing are related to this tumor. The MRI should be able to tell us if this “growth” has grasped a nerve as we suspect. And hopefully it will give them a bit more clarity as to what we are dealing with.

4. As always, Dr. Nauta was looking for the best of the best for me. I told him if surgery was going to happen, he had to put together the best team possible for me at Mt. Auburn because that was the only place I would agree to be admitted to.

5. I told him I still had 15 plus episodes of diarrhea per day and had barely begun to feel OK enough to travel etc, so delaying surgery as long as possible was my preference.

6. After 30 minutes we had covered most of the important points. This week I’ll be making follow up phone calls and setting up my next 2 tests before deciding what the next step is.

7. I told Dr. Nauta that there was now a PMP / appendix cancer specialist in Boston and that I would be seeing him this month for a 2nd (or maybe it’s my 4th or 5th…)opinion. In typical fashion, Dr. N said “that sounds great – you know I’m not territorial”. That’s just one reason why I love this team of doctors.

And that’s all I know. I took the weekend off from all things cancer and spent some time reading and relaxing in NH while Pat hit the slopes. We did make some time for sledding (37 year old bodies just don’t appreciate “catching air” in a plastic saucer) and skating (only fell once, but it was spectacular according to Pat and the bruise that stretches from mid-thigh to mid-butt).
Thanks to everyone for the thoughts and prayers. I appreciate and need them all.