7/28/2010

Creatinine 3.1, yipee. Just finished third week of fourth session.

I used to be terrible about saying "no". Maybe it's partly because I'm an oldest and can be a bit of a pleaser or maybe it's because I worked so long prior to becoming a stay at home mom that I felt I should be doing more.

I discovered after awhile though that I was incredibly busy doing a lot of things that didn't particularly feed me. That's not to say that some of the stuff I got involved in wasn't fulfilling. Some of it was. But a lot of it was a slog, not things I wanted to do because they mattered to me but things I felt I should do or just couldn't say no to. So I decided when I turned 50 I would extricate myself from all of this stuff and reassess. Then I got amylodoisis. Thankfully I had already started the extrication process but the part about reassessing and finding out what I was really interested in, what would feed my soul had to be put on hold.

Ironically now I have to say "no" and a lot of the time it's to stuff I want to say yes to. I'd like to be out on the boat with the boys more but I have to be careful about the sun because of the amount of prophylactic antibiotics I take. I have to say no now to many things because I just don't have the energy for them. What a lot of time I wasted saying yes and doing things I didn't really need to do or want to do. Why do some of us need to have something dramatic happen before they realize this? Your time is your currency, spend it wisely.

7/24/2010

Tuesday July 13 was the first week of session 4. This is always a long day as it involves the IVIG as well. My creatinine was 3.4 so holding steady.

Mom and I went down the following day to see the Zimmers again and Barbara was obviously weak but more engaged and like her old self. Since then unfortunately she's had some bad days and she is always in my thoughts and prayers.

Ryan Zimmer, Barbara's grandson and his mom Peggy came by and Ryan played the guitar for us. He is very talented and it was so relaxing. Barbara had the most beautiful smile on her face while he played and I felt almost transported to another place and time. There's something so magical about a well played acoustic guitar. Thank you Ryan for the lovely gift of your time and music. You were there for your grandmother but it was wonderful for me as well.

Tuesday the 20th was my second week and Kate is in town so she went with me to experience that magic that is chemo at RUSH. Creatinine was 3.3. Yeah! I was unable to go to the Grapevine for my usual celebratory lunch as I had a hair appointment (it's a lot of maintenance being a fake blond) but that didn't didn't stop my entourage, Mom, Dad, Kahan, Ryan (my brother in-law) and Kate from going. Tanks be ta God!

That same evening I took the train back into the city and met Matt and we cabbed it up to "Kidney University" at my nephrologists office. Dr. Whittier has been encouraging me for some time to attend one of these sessions in order to learn all about my dialysis and transplant options. I'm not in need of dialysis yet but because all the dialysis options involve some type of surgery and are not immediately ready for use they want you to pick an option so if and when the time draws near you are prepared.

Dr. Whittier has recommended Peritoneal Dialysis for me. Peritoneal dialysis is a way to remove waste products from your blood when your kidneys can no longer do the job. During peritoneal dialysis, blood vessels in your abdominal lining (peritoneum) fill in for your kidneys, with the help of a fluid (dialysate) washed in and out of the peritoneal space.

Peritoneal dialysis differs from hemodialysis, a more common blood-filtering procedure. With peritoneal dialysis, you can give yourself treatments in the comfort of your own home, at work or while traveling. You may be able to use fewer medications and eat a less restrictive diet than you can with hemodialysis.

Hemodialysis is the most common way to treat advanced, permanent kidney failure. During hemodialysis, a machine does some of the work healthy kidneys normally perform by filtering harmful wastes, salts and fluid from your blood that would normally be eliminated in your urine. In hemodialysis, your blood is allowed to flow, a few ounces at a time, through a special filter that removes wastes and extra fluids. The clean blood is then returned to your body. Removing the harmful wastes and extra salt and fluids helps control your blood pressure and keep the proper balance of chemicals like potassium and sodium in your body.

One of the biggest adjustments you must make when you start hemodialysis treatments is following a strict schedule. Most patients go to a clinic—a dialysis center—three times a week for 3 to 5 or more hours each visit. For example, you may be on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. You may be asked to choose a morning, afternoon, or evening shift, depending on availability and capacity at the dialysis unit.

Researchers are exploring whether shorter daily sessions, or longer sessions performed overnight while the patient sleeps, are more effective in removing wastes. Newer dialysis machines make these alternatives more practical with home dialysis.

Several centers around the country teach people how to perform their own hemodialysis treatments at home. A family member or friend who will be your helper must also take the training, which usually takes at least 4 to 6 weeks. Home dialysis gives you more flexibility in your dialysis schedule. With home hemodialysis, the time for each session and the number of sessions per week may vary, but you must maintain a regular schedule by giving yourself dialysis treatments as often as you would receive them in a dialysis unit.

There is a lot more involved in this such as the different options for vascular access for hemodialysis and having a catheter installed in your abdomen for the peritoneal dialysis but I'll save all that for another time.

I was glad I had Matt with me because which ever option I choose will involve some help and I feel like it's important for him to understand what's involved. I don't regret the way we handled my being at Mayo but he wasn't there for any of the BMT and it put him at a disadvantage when I returned home because I think he was somewhat unprepared for how sick I still really was and how careful I needed to be regarding infection.

Matt was great and asked several questions but I know it was difficult for him. As I've said before, in some ways it's easier to be the one that is ill. You don't have a lot of choices in the sense that if you want to live you get treatment. Everyone handles things differently but in my case I accept that this may be something I have to do in the future while hoping I never get to that point. I really don't think I'll have start making these decisions until December when I finish my last velcade/dex session. At that point when I'm off the Dex (the steroid) we'll be able to see if my kidneys have been steroid dependent.

Transplant was also discussed but I have to go into complete response with the amyloidosis before that can be considered and again my kidneys aren't that bad off yet. So transplant. I am really uncomfortable with the idea of someone donating a kidney to me. I suppose if I get sick enough that may change but asking someone for a body part seems like too much. What if they suffer from an accident or illness where their one remaining kidney is damaged and they need the one they gave me? What if the amylodosis rears it's ugly head again and starts to attack the new kidney? There is the cadaver option which of course involves a waiting list but I think less guilt. I don't know. As I said I'm not there yet and if my kidneys continue to fail and I suffer more as a result I might find I change my mind. I know if I had healthy kidneys and someone I loved or cared about needed one I wouldn't hesitate to donate but that doesn't mean I'm comfortable accepting one.

I feel like I'm starting to ramble and this post is getting very long. I'm in a waiting pattern right now and I think that's my biggest frustration. I like a plan. I like answers and certainty. Amylodosis is too nebulous for me. Too many ifs.

Today I am at the lake. The rain has stopped and Kate and her boys are here along with Matt and all my guys so I will revel in the magic that is Green Lake, which unlike RUSH is the real thing.

7/8/2010

Matt's cousin Brian who is a surgeon "fondled" my new port while we were in Nebraska at the McGuire Family reunion and pronounced it perfect. Tanks be ta God!

No chemo this week and I had a positive consult with Dr. Gregory on Tuesday. My numbers continue to be good.

My week was off to a great start. Wednesday my dear friend Kathy-Karen Pickard came over and helped Sophie and me unpack boxes and reorganize my glassware and serving pieces from a decorating project that has been finished for well over a month. The girl has a gift!

I knew I was feeling too good and things were going too well. Yesterday on my way out of a vet appointment with Baxter I tripped and fell literally flat on my face. My arms were full but I did manage to catch myself somewhat as evidenced by the scrapes on my palms, but for whatever reason I was unable to stop my face from crashing into the pavement. I look like I've been in a bar fight. I have a large goose egg above my right eye and an abrasion below it. The blood has pooled all around they eye and it looks like someone went crazy with the purple eye shadow.

The funny thing is earlier in the day I ran into several people who said I looked great. I've been feeling well, so much better than last summer and while I still don't really feel like me yet I'm getting there. So I was thinking yeah, it's all good.

What hubris! The Gods have put me back in my place. They showed me. Well at least it made me stop whining about how tender my port is.

I have fled to Green Lake to hide, fade and hopefully come up with a much better story to go with the black eye. I'm not sure I can blame the amyloidosis for my klutziness.

7/3/2010

I've discovered as I start to feel better I'm not as quick to update my blog. I'm thinking this is probably a good thing as the blog was recommended by my therapist as a way to feel less like I've become my disease. These last several weeks have been really great and while I still have my down days they are fewer and farther between. I feel more myself than I have in a long time.

Monday I had the port put in and generally it went well. The anesthesiologist told me I would be in a twilight state, not completely under but stronger than the level they use for a colonoscopy. I might be somewhat wakeful and notice blue draping over my head but more than likely I wouldn't remember any of it. Note to self, NEVER get a colonoscopy at RUSH. Not only was I more aware than I would have liked to have been, I still remember it. For a place that practically shoves morphine at you in the ER they are a bit stingy in the OR. Plus they sent me home without any prescription for pain medication, recommending Tylenol. I don't know about you but I might as well suck on a tic tac for all the good that was. Thankfully Ben was given a prescription for pain medication after his skateboarding debacle in Green Lake and there was some of that left so I was able to take the edge off that first night.

My chemo nurses were giddy with delight when they saw my port on Tuesday. I might be overstating the level of enthusiasm but I don't think so, they were pretty darn happy and we used it right away. Today is Saturday and it's still tender and sticks up more than I was expecting but we'll see how it goes.

6/26/2010

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.

6/22/2010

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.
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6/14/2010

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.