Saturday, June 26, 2010


I went into Rush with my entourage yesterday, including my father. First we had a sumptuous lunch at the Grapevine and then it was off to see the surgeon for the consult regarding my port. Dr. Wool seems conscientious and kind and I am scheduled for Monday morning at 9:00 am.

I didn't mention this is in my last blog but as my second visit to Dr. Wool's office was so similar to the first I can't resist. Hopefully he's too busy to read blogs or at least won't have time before Monday when he's cutting into me.

When I went in last Tuesday to make my consult appointment it took longer to set that up than it took to get my chemo. There are two doctors that I have seen working out of this tiny office. There are many more listed on the business card but as I say I only saw two. Each has their own receptionist/assistant and Dr. Wool's is a very sweet diminutive lady, Ruth. My mom and I have decided that they kind of look alike or they might even be married as you know sometimes when you spend enough time with someone that can happen. They have an interesting banter that implies they have been together in some capacity for a very long time.

Anyway, on my first visit there last Tuesday this tiny office was packed and when it's your turn to check in you walk back to Ruth's desk. Earlier when I was sitting in the waiting room with my mom I kept hearing this odd sound and finally figured out it was a typewriter! Go figure. Ruth types everything up on a typewriter. I don't know about you but the last time I saw a typewriter it was in a resale shop and no one was actually using it. So, When I step back to her desk sure enough there it is.

Her desk is covered, and I mean covered with papers which are in turned covered with sticky notes. In the meantime the phone is ringing off the hook and this poor woman seems overwhelmed. I wanted to replace her with Kali, the goddess of time and change, you know the one depicted as having ten heads, ten arms, and ten legs but remarkably this darling little woman managed to get it all done and remain relatively unflustered. It took forever, but she did it.

When I went in yesterday I was curious to see if it would be a repeat from Tuesday. And sure enough Mr. Peabody, we stepped into the "way back machine" and the typewriter, papers and sticky notes were all still there albeit more organized.

It's easy to get spoiled by a place like Mayo which is almost beyond efficient. For my part, suffering with amyloidosis, a disease the medical profession is still learning about, that kind of efficiency is comforting. At the same time though this doctor and his office reminded me a little of the doctor Burt Lancaster played in Field of Dreams. Warm, real, a throwback and I found that oddly comforting as well. To them you are a person not an illness. I'm finding there is no "right way" to get treatment. It takes a team. My Mayo team gives me confidence. I know this disease is a priority and they are working towards treatment and cure. My Rush team, Dr. Gregory and all the chemo nurses manage my care and keep me as healthy as they can through treatment. As a result I don't find chemo frightening or depressing. And there are all the others like my nephrologist and cardiologist and Dr. Wool who step in at different times for different reasons or procedures. I am learning a lot about the medical profession. It can be incredibly frustrating for both the patients and doctors but is full of good caring people. While I feel it takes some managing on my part I feel like I have a great team. Unlike the Blackhawks, I feel no need to trade.

Wednesday, June 23, 2010


Yesterday was week three of the third session of velcade. My creatinine number was 3.3 so maybe the additional dex recommend by Dr. Leung at Mayo is working. :-)

In general I still continue to feel well and was curious about how I would feel with the extra steroids (dex) that I take on Friday. I still had one day where I really ran out of gas but this time it was on Monday and I was still pretty wiped out for most of Tuesday until the steroids I take with the velcade kicked in. If my reactions continue in this way this is definitely something I can live with.

I think I mentioned in my earlier blog that I have some stenosis in the veins in my lower arms and other veins that roll. This has made putting in the IV difficult so yesterday after my chemo I had an ultra sound done on my neck, chest and upper arms in preparation for installing a port. Because I had a central line at Mayo the ultrasound was needed to see if my veins could handle a port.

A central line type of catheter is inserted into a vein at one location (neck in my case), and tunneled under the skin to a separate exit site, where it emerges from underneath the skin. It is held in place by a Dacron cuff, just underneath the skin at the exit site. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. However because this device does exit the skin there is maintenance involved and it has to be cleaned regularly. It is also uncomfortable.

A port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". This is much simpler that the central line which was partially under the skin.

So far it looks good. I consult with Dr. Wool (the surgeon) on Friday and the surgery should occur sometime on Monday. It was indicated to me the port could be used the next day for chemo. I'm not wild about having a device implanted under my skin but since we are hoping to complete 8 full sessions of velcade it makes more sense that digging around week after week for the next several months hoping to find a good IV vein.

As always I appreciate all your thought, prayers and good karma. Please keep my Aunt Barbara who is suffering with lung and bone cancer in your prayers as well. My mom and I went down to Indianapolis see her, my Uncle Karl (who just had a hip replacement) and my cousin Kaa last Wednesday. I am so glad we made the trip even though this is a sad and stressful time for them.

Monday, June 14, 2010


I haven't been so great about keeping up with the blog. Last week on Tuesday I started my third session of the Velcade. Since it was the beginning of a new session I also had the IVIG so it was a long day made longer by the fact that my iPhone was giving me fits. After chemo my mom drove me out to the Apple Store in Oak Brook for a visit to the genius bar. Normally I would have let this go until the next day but the next day I was leaving for a consult at Mayo. There was no way I could feel comfortable leaving town when I wasn't sure the kids could reach me. My mom is a saint, as I said it was a loooong day!

On Wednesday the Kahan and I made our way up and over to Rochester. We had a beautiful day for driving and arrived without incident. I love my doctors and the care I receive at Mayo but as Susan and I entered the downtown area we looked at each other and said "Ugh". Mayo is not our happy place. There are just too many yucky memories for both of us.

Thursday was a day for tests and doctor visits.

First Dr. Buadi. I love his smile. His picture on the Mayo website doesn't do him justice. He looks way too serious and this is a man with a sense of humor. He is so knowledgeable regarding amyloidosis that even if the news isn't great I feel like I'll be okay because I have him in my corner. Fortunately the news was good. All of the tests confirmed what Dr. Gregory also believes, and that is that the Velcade is making a difference. Hematologically I am having a positive response.

I am scheduled to go back to Mayo August 9th. and repeat the all the tests. If the immunofixation is negative then Dr. Buadi will order a bone marrow biopsy. Immunofixation permits the detection and typing of monoclonal antibodies or immunoglobulins in serum or urine. It is of great importance for the diagnosis and monitoring of certain blood related diseases such as myeloma and amyloidosis. A negative number would indicate CR as they call it, which in Mayo speak is complete response. (Because amyloidosis is chronic and not curable they don't use the term remission). The bone marrow biopsy would help to confirm that. If I am in complete response Dr. Buadi would still like me to continue the Velcade for a full 8 sessions just to be sure they really knock it back. I seem to be tolerating the Velcade well so far but the effects are cumulative so we'll have to see. If when I go back August 9th the immunofixation number is positive then I continue on the Velcade and we will assess from there.

So that's the good news. The not so good news is that my kidneys are not happy campers. My creatinine was up to 3.9. Dr. Leung, my nephrologist at Mayo however noticed a correlation between my creatinine number and the weeks I am off velcade and therefore also off dexamethasone (the steroid). Currently I only take the dex (dexamethasone) on the day I get my chemo. Dr. Leung has recommended that I take the dex twice a week (on Tuesday with the chemo and then again half as much on Friday). On the week I am off chemo he wants me to stay on the dex twice a week although on that Tuesday I won't take quite as much as I take on the Tuesdays I have chemo. He has found this to be helpful in some of his other amyloid patients that are having similar problems. He is hopeful this will help my kidneys recover a bit and settle at a reasonable creatinine number. There is no guarantee this will work or even once I go off the dex that the creatinine won't go up again but we're going to give it a try. If I go into complete response I would be eligable for a kidney transplant if it came to that but I'm getting ahead of myself. Best to just see what the added dex does and go from there.

I am feeling optimistic and hopeful.

Wednesday, June 2, 2010


This is my week off of chemo. I went in yesterday for a consult with Dr. Gregory to see how things were going and I found it a bit disappointing.

I was under the impression from Dr. Buadi at Mayo that after two sessions we would be discussing the effectiveness of the current treatment. That was my expectation regarding my consult with Dr. Gregory as well. Unfortunately not all the tests results were in, most notably the 24 hour urine test. This test is important for measuring kidney function. My creatinine is still at 3.2 (stable) but my albumen level is low and has been for the last month. The albumen is a protein that is found in the blood. A low number in my case is just another indication that my kidneys are not working well. The results of the 24 hour urine test will show how much protein my kidneys are losing or spilling. I wasn't particularly surprised by the low albumen number as I have been feeling like I've been retaining more fluid primarily in my midsection. However without knowing how much protein I'm actually losing I don't know if it's something that would need to be treated.

I remember after the BMT I was given IV albumen along with lasix. Combining intravenous albumin with lasix is often used to treat accumulation of fluid in the abdomen or tissues. Albumin remains in the circulation for a while and increases the plasma osmotic pressure (pertaining to or of the nature of osmosis, the passage of pure solvent from a solution of lesser to one of greater solute concentration when the two solutions are separated by a membrane which selectively prevents the passage of solute molecules, but is permeable to the solvent), helping to draw fluid back into the circulation from wherever it is accumulating. Lasix helps to get rid of the fluid in the urine.

So as a result, with some numbers in and others pending this consultation was much like my last one a month ago. I am tolerating the few side effects I am having with the Velcade and I have not been hospitalized with illness since starting on this protocol. All good and as far as Dr. Gregory is concerned worth continued treatment. When I indicated my dissatisfaction with not having something more definitive she told me I need to be patient. Clearly not one of my strong points.

While I feel the level of care I am receiving at Rush and from Dr. Gregory in particular is wonderful it was pretty obvious yesterday that I am being treated as one would treat someone with myeloma. Amyloidosis is rare and tricky and Mayo is a center for excellence in this disease. I am seeing Drs. Buadi and Leung at Mayo on June 10 and we should have all the results for the tests I had run yesterday as well as the results for the tests (pretty much the same ones) that they will have taken at Mayo on the 9th. I'm hoping that this consult will be more satisfying.

My "roid rage" apparently continues even when I am not taking the steroids. In must frustration at not getting a more concrete idea of how well or not the Velcade is working I lit into my poor father on an entirely different subject. While I have apologized already I still feel badly. I think because I was so frustrated in an area where I feel I have very little, if no control, this disease, my release was to go after something that I felt was controllable (deck issues at the lake). How wrong I was on so many levels. What I have discovered is that one of the few things I can control is my temper and I need to do a better job. I might be ill but I needn't be unpleasant as well.