Wednesday, July 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.

Saturday, July 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.

Thursday, July 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.

Saturday, July 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.