8/20/2010

This has been an oddly difficult week for me and I'm not sure exactly why. I have felt tired and somewhat sad.

The remembrance for my Aunt Barbara was this past Tuesday at her home in Indianapolis. I was able to switch my chemo from Tuesday to Monday so that I could attend. It was the first week of a new session so it included the IVIG as well. My creatinine was at 3.4 up from the past 2 times where it was at 3.1. The week prior was my "week off" from chemo so while I still take the steroids during that week, I take less. 3.4 isn't a terrible number but because it did pop up it does make me feel like my kidneys are steroid dependent. I hate the steroids but I hate the idea of dialysis more. Or do I?

Went to the salon this week to have my hair color touched up. For those who haven't seen me in a while I'm blond. 3 hours later I emerge looking pretty much the same as when I went in. No unsightly roots but still short curly hair and a face and midsection distended by steroids. I hate that I look like I do and I hate that it bothers me so much even more.

It's almost been a year since my BMT. While I definitely feel better than I did a year ago I was expecting or hoping that it would be more successful. So to find myself almost a year later on chemo with more treatments to come is a bit depressing.

Ben and Declan had a wonderful time at Windell's, a freestyle skiing snowboarding camp but Ben over rotated on a flip and came home with a pretty severe concussion. He's had an MRI and an EEG both thankfully normal but his neurologist would like him to take it easy for another month which means no water skiing, tubing, skateboarding or Fall Ball Lacrosse. He is healing well but still has memory loss for about 4 hours of that day. It's hard to tell an active young boy that he needs to take it easy when he looks and feels fine but more and more research is showing that repeated head injuries (he had a slight concussion last May) are much more damaging than we used to think.

School is starting which means summer is ending, my favorite time of year. We've made it up to Green Lake a lot in spite of chemo (me), summer school (Ben) and Drivers Ed (Declan). It feels like it's been a sort busy summer. I'm not ready yet for the early mornings, mounds of paperwork and homework issues.

As I mentioned in my previous post my Aunt Barbara passed away and her remembrance was on Tuesday. It was a beautiful and loving tribute to an extraordinary woman. I'm sure that is part of what has me feeling down as well. I find it incredibly painful to see people I care about in pain.

So here I am feeling worn out and sad and feeling a little like amy (amyloidosis) has gotten the better of me this week. But maybe it's just life and amy and after a good lie in tomorrow morning I'll feel more like myself. After all, I'm still here. I still feel better than I did last year. My family is awesome and my friends are a godsend. Boo fricken hoo. It's time for a cocktail!

8/9/2010

We lost a member of our family this past Saturday to complications associated with lung and bone cancer.

Our Aunt Barbara was my mothers only sister and last living member of her immediate family, her brother Jim and Mother Muggy having both passed away several years ago.

My mother and her sister were six years apart in age to the day. Barbara left home I believe at age 17 to attend college and never returned to live with her family again. My mother being only 11 at the time says she really only got to know her sister well as they both became adults.

To me Barbara was always larger than life. She was beautiful, accomplished, sophisticated, generous and brilliant. Barbara lived and traveled the world. She was 80 so it was not a short life but none the less a life cut short.

While we mourn for all of her family left behind I feel most deeply for my cousin Kaa and my mother.

Kaa lives overseas and for the last several months has put her life on hold to care for her mother. Obviously it's where she wanted and needed to be but through my own illness I have spent a lot more time with my own mother than I probably otherwise would have. I have gotten to know her better and appreciate her more. She has been a source of strength for me and so for Kaa, as a daughter losing her mother my heart breaks.

My sister Kate was just recently here for almost two weeks prior to moving her family to England. Kate was living in the Cayman Islands when I had my BMT and she came to Rochester and spent 2 weeks away from her family to help care for me. She put her life on hold for me. My mother has lost her sister and I was so sad last week just thinking I might not see Kate again for another year. My heart breaks for my mothers loss as well.

I have been blessed with many dear friends and my mother and my sister are not the only people who have selflessly put their own lives on hold for me but when you lose someone in your family it's your family you cling to. Only they truly understand your loss.

Barbara lived a rich life and next week we will gather to celebrate that. Sad for our loss but so much better for having her in our lives for the time we did.

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.