Tuesday, November 30, 2010


Started session 8 today and creatinine still low at 2.99. I don't have my Mayo schedule yet but they are working on it.

We had a great Thanksgiving thanks to Fox & Obel Caterers and Matt and my Mom who managed the bird and most of the cleanup. This has never been one of my favorite holidays because it is so labor intensive on both the front and back end but I must say I was really able to enjoy it this year.

Matt is thankful that my creatinine is a 3.0 or lower and that all the boys have a GPA of 3.0 or higher. I was watching Morning Joe on MSNBC the day before Thanksgiving and Donald Trump was on. I was thankful for the excuse of velcade and steroids to explain why I actually thought he made sense. Shades of Ross Perot. Scary!!

Hope everyone had a great Turkey Day and managed to find something to be thankful for even if that meant only surviving the holiday.

Wednesday, November 17, 2010


Just finished session 7 yesterday and creatinine was at 2.97. I am still not noticing a change regarding my appearance regarding the steroids but I am still on them and I've been on them for so long Dr. Gregory assures me it takes time.

We will be hosting Thanksgiving here but as it is my least favorite holiday (way too much work) we've decided to cater it (although we will cook the bird). Also with 3 dishwashers cleaning up is easier. If it won't go into a dishwasher I don't want to own it.

Happy Thanksgiving to everyone!

Wednesday, November 10, 2010


I haven't been too good about posting lately but that does not mean things aren't going well. I caught a cold last week so stayed in all weekend and have managed to keep it under control.
In the past when I have been fighting any illness or infection my creatinine has bumped up but my number this Tuesday was once again a 3.

I am still treading water and waiting for my trip to Mayo in January so there really isn't much to say. I haven't noticed a lot of difference in my appearance since being on less steroids so I'm still suffering from Body Dysmorphic Disorder. If things go well at Mayo I am hoping to get off all this stuff and give my body a break. At this point I'd just be happy with a couple of months although years would be great.

Friday, October 29, 2010


My sister-in-law Alexandra sent this to me and I couldn't agree more so I thought I'd share.

Subject: A thought to share

a thought to share... I like this...

Someone had just finished taking an evening class at Stanford. The
last lecture was on the mind-body connection--the relationship between
stress and disease. The speaker (head of psychiatry at Stanford)
said, among other things, that one of the best things that a man could
do for his health is to be married to a woman whereas for a woman, one
of the best things she could do for her health was to nurture her
relationships with her girlfriends. At first everyone laughed, but he
was serious.

Women connect with each other differently and provide support systems
that help each other to deal with stress and difficult life
experiences. Physically this quality "girlfriend time" helps us to
create more serotonin--a neurotransmitter that helps combat depression
and can create a general feeling of well being. Women share feelings
whereas men often form relationships around activities. They rarely
sit down with a buddy and talk about how they feel about certain
things or how their personal lives are going. Jobs? Yes. Sports?
Yes. Cars? Yes. Fishing, hunting, golf? Yes. But their
feelings?--rarely. Women do it all of the time. We share from our
souls with our sisters, and evidently that is very good for our
health. He said that spending time with a friend is just as important
to our general health as jogging or working out at a gym.

There's a tendency to think that when we are "exercising" we are doing
something good for our bodies, but when we are hanging out with
friends, we are wasting our time and should be more productively
engaged--not true. In fact, he said that failure to create and
maintain quality personal relationships with other humans is as
dangerous to our physical health as smoking! So every time you hang
out to schmooze with a gal pal or sister, just pat yourself on the back
and congratulate yourself for doing something good for your health!
We are indeed very very lucky.

Sooooo let's toast to our friendship with our girlfriends/sisters.
Evidently it's very good for our health.

Wednesday, October 27, 2010


Sometimes I feel a little bipolar. Recently I feel like I have been going through a low period but now as I continue to adjust to less steroids I am on the upswing. I have taken control of the things that I can and that has been a huge weight off my shoulders. My office which is much more than that had gotten completely out of control to the point where I was so overwhelmed by the chaos I literally couldn't go into it. It was such a mess I didn't know where to start. At the suggestion of my dear friend DTS I hired this fabulous woman to come in and help me organize. Four exhausting days later you wouldn't recognize the place. This has totally translated into my brain feeling more organized and less chaotic. Controlling the things I can is empowering and calming.

Yesterday I started session 7 of 8 on chemo. My creatine is at 2.96. This is the first time it has been below 3 since the BMT. Maybe Amy has decided to take a vacation after all. I am thrilled and hopeful. Before we backed off the steroids I was not in a good place. I not only didn't look good but I felt awful. I was pretty convinced I was sacrificing my kidneys to some extent by cutting back on the steroids but I was willing to take the risk to feel better. Thankfully that has not been the case.

I tend to temper my optimism so if or when things don't go as expected I am not devastated but it's a little harder this time to not get excited.

Wednesday, October 20, 2010


No chemo this week so no numbers but feeling well.

Tuesday, October 12, 2010


Just a quick update from chemo today. Creatinine 3.1. Yipee! Dare I hope that all those nasty steroids gave my kidneys a chance to stabilize? It's hard not to get kind of excited.

Wednesday, October 6, 2010


So I had some surprising news at Chemo yesterday. I have been cutting back on the steroids to combat the side effects of the Cushings Syndrome. Last week my creatinine was up to 3.3 from 3.1. It's a fairly negligible jump and not unexpected but yesterday the creatinine was back at 3.1. Go Figure. Dare I hope that the time I was on the extra steroids was enough time to give my kidneys a chance to stabilize? I haven't really noticed any physical results from backing off the chemo yet and I know that takes time so it could be that as time goes on and the extra steroids leave my system the creatinine could creep back up but for now I'm going to take the gift and enjoy it.

So I have been asking myself lately where does God fit into all this? It seems that recently this topic has come up quite often. I am not an overtly religious person. I consider myself an agnostic. I believe in the possibility. Having been raised Catholic which in my opinion is as much a culture as it is a religion I view myself as a sceptical, questioning Catholic. Which to most Catholics kind of goes against what being a Catholic is. You're either in or you're out. Fish or cut bait. But it's never been that simple for me. When I think of my Catholicism I think of that great line from one of the Godfather movies where Al Pacino in speaking of the mafia says "I keep trying to get out but it pulls me back in." I believe my issues are primarily with Catholicism not with God but as I mentioned I've recently had some very interesting discussions with friends about God and if, where or how he fits in when it comes to things like tragedy and illness.

My father has a cousin who lost a grandson to Lesch-Nyhan syndrome (LNS). It is a rare, inherited disorder caused by a deficiency of the enzymehypoxanthine-guanine phosphoribosyltransferase (HPRT). LNS is an X-linked recessive disease-- the gene is carried by the mother and passed on to her son. LNS is present at birth in baby boys. The lack of HPRT causes a build-up of uric acid in all body fluids, and leads to symptoms such as severe gout, poor muscle control, and moderate retardation, which appear in the first year of life. He went to Duke for a blood cord stem cell transplant and didn't make it.

I went to the wake with my parents and granted the families grief was raw and new but I was amazed by their faith. If I had lost my child at 18 months after prolonged suffering I think I would be angry with God. What kind of a God lets things like this happen to innocent little children. But does that view God more as puppet master?

A friend told me about a friend of a friend who has stage 4 lung cancer and has made peace with God and felt like she's gotten her family to a good place so is ready for the inevitable. I don't feel a need to make peace with God because I do not believe we re at odds.

If there is a Supreme Being, whatever you may call him I believe he/she/it puts us here and we are given free choice. Stuff happens good and bad we deal with it the best we can. I don't believe our lives are orchestrated by a God, therefore I'm not sure I was put here for a reason as some have asked. Is there a final reward for good choices or behavior? As Hemingway says in the last line of The Sun Also Rises, "Isn't it pretty to think so." But in all honesty I don't know. I don't have the kind of faith or certainty that I see in others. I am awed by it. I admire it. Let me be clear though, this doesn't make me sad or leave me feeling wanting or lacking.

Several people have asked me if I've had any great epiphanies since my diagnosis. While my views on some things have changed, like how I want to spend my time or what really matters to me, my feelings regarding God and religion have not. I don't blame him and I don't expect him to cure me. So I try and live the best life I can live which I think is pretty much what I was doing prior to this illness just maybe with a little more urgency now. That said, if my views regarding God and religion haven't changed why would I expect someone with deep faith to change their views?

So I ask again, where does God fit into all this and I guess the answer I come up with is where you need him if you need him.

Friday, September 24, 2010


Me on steroids, grinning and bearing it!

Last weekend was my annual Mother Sans Child weekend with a group of women I have known since Ben was 3. We took a class together called "Mother/Child" and at the end of that class we decided to take a weekend for ourselves up at Green Lake. It was so successful it became an annal event. It is sacrosanct.

It is a time to connect and commiserate and other than last year when I was up at Mayo we haven't missed a year. We started out as 11 women I believe and along the way lost 3. We have been a core group of 8 for quite a while now and even though one of us has moved to Connecticut we still find the time and means to stay close. These unique and special women are more than friends. They are my touchstone. These women know me well, challenge me to be the best I can be and always forgive me when I'm not. I hope I do the same for them. Sometimes due to work or family one or 2 of us isn't able to make it to Green Lake but they are always there in spirit and no less a part of us because they aren't there. This year we were 6 at Green Lake.

As I mentioned in my previous posting I gave my Mayo trip a B but I have to admit that I have been struggling more with the realities of my illness in the last few weeks. Tomorrow is the anniversary of my BMT and it weighs on me. I have been battling with amyloidosis now for a full year and I am tired.

While I am in the process of cutting back on the steroids to take care of the Cushings Syndrome it has to be over time so I have yet to really feel any of the benefits. I am grossly bloated in my neck, face, shoulders and midsection. Not only is it unattractive it is uncomfortable.

When my dear friends arrived on Friday my steroids had quite obviously kicked in and I went on a rant (roid rage) about how it drives me crazy when I run into people that they invariably say "you look great", which in my mind I do not. They suggested I try and express my feelings in my blog so here is my attempt.

First let me say that I know when people say I look great they are trying to be nice and encouraging and for the most part what they are really trying to say is it's nice to see me out and about. I get that. But here's the thing, this illness has played havoc with my appearance and I do not look like myself. I have been told I see it more than others but that makes it no less real to me.

Every time I look in the mirror I am reminded that I have this illness and every time someone says I look good it does the same thing, it reminds me. I wish I didn't care so much but I do. It's bad enough having amyloidosis but do I have to look like crap as well? The answer unfortunately to some extent is yes. I need some level of steroids for the velcade and my kidneys. So here I am battling something else I have no control over. You gain some weght, you diet, you get some wrinkles you botox, you bloat from steroids you grin and bear it. As I said I am cutting back and I am hoping soon to look a little less bloated but until then if you see me could you just say hi, it's nice to see you out?

I know, I'm a pain!

Wednesday, September 15, 2010


Okay so with the idea in mind that everyone should try everything at least once, and having a day to kill the Kahan and I decided to check out the Mall of America. We had been told that for some this is a destination, something people will actually plan a vacation around and that it is so large it can take a couple of days to see the entire thing. I don't get it. It's a giant mall with an amusement park in the center. I've seen it and I don't ever need to go back. It's a sad commentary on our society that this is someones idea of a vacation destination. I did however console myself (more on that later) with some excellent retail therapy and and a delicious sushi lunch.

So why did I need consoling you may ask. Dr. Buadi called while we were on our way up to this bastion of retail excitement with the not so great news that the immunofixation number came out positive and we are canceling the bone marrow biopsy. While I am responding to the velcade my amyloidosis is tenacious and I am not in response. I am of course very disappointed. I will continue on the velcade and we will reassess in January.

Overall I guess if I were going to give this trip to Mayo a grade I'd give it a B.

I have developed Cushings syndrome from the steroids. Cushing's syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time. The most common cause of Cushing's syndrome, sometimes called hypercortisolism, is the use of oral corticosteroid medication. Common signs and symptoms involve weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders, pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms, thinning, fragile skin that bruises easily and slow healing of cuts, insect bites and infections. As I mentioned in my previous post we have a plan in place to start decreasing the amount of steroids I take and the general consensus is that my side effects have been caused by this and not the velcade.

My numbers all indicate that while I am not in response I am still responding to the velcade so I am in no worse shape than I was when I came up here. While I had hoped for better news the news I did receive was not bad. I continue to tread water.

Tuesday, September 14, 2010


It's time for you to wake up and snap out of your dreams, especially if you've been lost in fantasies about exotic adventures and far-off lands. There's nothing wrong with letting your thoughts wander, but you have work to do now and can't afford the luxury of drifting in the impractical realms of your imagination. Nevertheless, don't lose touch with your hopes; just express what you can in the real world, for that's where your vision must manifest.

The above is my horoscope for today. Not sure what to make of it. Yet.

I am at Mayo and I have been feeling for the last few weeks as though I have been treading water. Alive, head above water, but not really going or getting anywhere. I have come here for answers fully knowing that with amyloidosis there frequently are none. My numbers are good. The Velcade appears to be doing it's job. Most of the side effects I have been experiencing have been attributed to the steroids rather than the chemo and a plan is in place to begin backing off on those. Rather than 60mg per week I go down to 40. I hope this helps because I actually felt better when I was on less steroids and my creatinine was higher than I do now with a lower creatinine. Time will tell if my kidneys have become steroid dependant and to what extent.

Although the immunofixation number was not in when I saw Dr. Buadi based on my other numbers he was confident enough that it will be a negative number that he went ahead and scheduled a bone marrow biopsy. If this number ends up coming in positive he will contact me and we will cancel the biopsy but he semed pretty positive that would not be the case.

Unfortunately the biopsy could not be scheduled until 1:00 pm Thursday so that means the Kahan and I have entire day to kill tomorrow in Ra CHa Cha (our pet name for Rochester). The bone marrow biopsy will confirm whether or not I am in response. If I am in response, great news and I will continue velcade through December and then we'll see how long it lasts. Hopefully longer than the BMT but there are no guarantees. Unfortunately I will leave here Thursday pretty much right after the test so I will not have the results. I hope to get them Friday.

As always I find myself cautiously optimistic. I can't seem to get as excited as others (my mother, the Kahan and Matt) about my positive numbers because I still do not know if I am in response. Even if it turns out I am I will still be cautious on the optimism front because I was in response from the BMT and it didn't last. In my mind I am still treading water. I'm getting better at it and my head might be a lighter higher out of the water but there are still too many unknowns to feel like I'm actually moving forward.

So back to the horoscope. My father turns 80 next August and he has been talking about renting a house in France for all of us to gather at next summer. A goal I have set for myself is to stay off dialysis until this time next year and control my kidneys with the steroids. Based on my side effects that may not be possible. But I don't think I've been in denial about that. As Alexandra says "stay nimble". I know my ability to make this trip is dependent on where I am with my illness but as the horoscope says I don't want to lose touch with my hopes. I want to continue to plan, whether it's Montana over Christmas break or France next summer and deal with set backs if or when they come. I don't feel like I have to luxury of putting off plans until I get or feel better.

Saturday, September 4, 2010


Things have felt a little out of control the last couple of weeks. The kids are all back in school and we've made it through all 3 curriculum nights but it's been exhausting.

This upcoming Tuesday will be the last week of session 5 and then I'm off to Mayo for the appointments I had to cancel last month. My creatinine number has remained in the low 3's.

Dr. Gregory is concerned that my recent spates of clumsiness are signs of the neuropathy that can be a side effect of the Velcade. I didn't put it together myself because it was not the way the symptoms were originally described to me. I'll mention it to Dr. Buadi when I see him but it may shorten the amount of sessions I can tolerate. In the meantime I am taking things slowly and watching my step.

More after Mayo!

Friday, August 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!

Monday, August 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.

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.

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.

Tuesday, May 25, 2010


My Scarlett O'Hare approach to life ("Oh fiddle dee dee, I'll worry about that tomorrow") has finally caught up with me. My office is a train wreck and it took the McGuire Family Reunion to put it into sharp focus. The reunion is 4th of July weekend and I vaguely recall getting something in the mail regarding events, t-shirts etc. Jerry sent out a family email regarding plans and I have searched and searched but I can't find a thing. So I have admitted to Matt my severe disorganization, conceded defeat and like Scarlett have thrown the ball in his court. I have a feeling that if I don't get some of my act together soon he's going to really regret being so competent while I was up at Mayo.

Chemo today and I'm off next week. Creatinine still at 3.2 like last week and as far as I'm concerned that's good. Anything below 3.5 makes me pretty happy. DTS (Desiree Tucker-Sorini) was my chemo pal today. Can you believe Kahan threw me over just because her mom is in town for George's graduation? I mean come on where are her priorities? I thought her mom really enjoyed Rush last week.

Traffic was horrendous! Is it really too much to ask that the state of Illinois leave us at least one route into the city that isn't under construction? We had seriously bad driving karma today on the way in but DTS was a saint because I was fretting over an appointment I thought had been moved from 10 to 9:30 (later found it hadn't been moved)and being a side seat driver. The ride home was much smoother. The chemo went pretty well except that towards the end I got really tired. Usually the steroids have kicked in by then but DTS said it looked like all the air (she did not say hot air thankfully) had gone out of me. We had made arrangements to meet Karen at the Grapevine in LaGrange for lunch and DTS thought maybe we should cancel. Are you kidding? I rallied in no time. My Tuesday reward lunch at the Grapevine was not going to be denied. Once again a fab meal and great conversation. A silver lining perhaps??

I don't know if I mentioned this in one of my last posts and I'm too lazy to try and find it so excuse me if I'm repeating myself. A few weeks ago when my mom was in town we met this darling man Francisco Mendoza and his nephew James. For privacy reasons I won't go into Mr. Mendozas reason for being at the clinic but suffice it to say he is amazing and I get strength from seeing him. The reason I mention him (maybe for the second time) is that he is an art teacher and muralist from the Pilsen neighborhood in Chicago. While obscure to most Chicagoans, he is well known to Pilsen residents who have seen his numerous student collaborations on murals at the old Orozco school and the Blue Line's 18th Street "L" station. He spent quite a bit of time explaining to DTS and me the process by which his mural are made. They are hand-set Venetian glass tiles and the 17 mosaic murals on the front of the new Orozco Community Academy are an ambitious addition to the Pilsen neighborhood's status as one of Chicago's best outdoor galleries. The mosaics, which can be viewed from Harrison Park across the street, represent perhaps the best work yet of Mendoza. For Chicago Public Schools, the artwork is "the most refined" of any mosaic mural in its 600 schools because of the professional work and materials. In all, the 2,100 square feet of mural panels--including six as big as 7 feet by 27 feet--pay homage to, among others, the Mexican neighborhood's character, the importance of education and Mexico's prominent muralists, namely Diego Rivera and Jose Clemente Orozco, after whom the middle school is named. Currently he is also being featured in an exhibit at the Mexican Fine Arts Museum called Translating Revolution: U.S. Artists Interpret Mexican Muralists. This unique exhibition examines the influence of Mexican muralists on U.S. visual culture and the subsequent re-invention of the mural movement in the U.S. I believe he said that exhibit would be open through August. He suggested that anyone interested should call the Mexican Fine Arts Museum and He said they set up walking tours of the mosaics in the neighborhood. As I start to feel better this is definitely on my to do list and DTS says she'd love to do it to.

Meeting this remarkable man is definitely a silver lining!!

Friday, May 21, 2010


Wednesday was a fabulous day!! I felt better that day than I have felt in weeks, months even. I don't know what the reason was, perhaps the beautiful 75 degrees and sunny day helped, after all my family refers to me as Susan "Weather is my Life' Fox. Whatever the reason it was an amazing gift and I'm still on that high.

When I have a good day, which usually involves relatively high energy, minimal shaking and a steady stomach, I try and accomplish as much in that day as I can. There is of course a part of me that worries I'll overdo it and pay a bit the next day but the next day is not guaranteed to be a good one so I push myself. I'm so glad in this case I did because I accomplished a lot and haven't had that feeling of satisfaction in a long time. I also felt way less guilty when I slept in this morning (Fox had a day off and slept in too and Matt got the other two to their trains).

It's pouring rain now but the weather people are promising a nice weekend and a sunny and hot next week as well. So if the weather had anything to do with my fabulous Wednesday I should be in great shape next week!

Tuesday, May 18, 2010


Okay at 52 years old you would think I would know by now that working out does not put me in a better mood. You know those people who just love to workout, get an endorphin high from running? Yep, not me. I see people running and I feel pain. I think that's why I liked tennis. I could work up a sweat but I was playing a game so it didn't feel like work. My therapist thought some exercise might make me feel better. Not so much. On the up side however it didn't make me feel worse and I do enjoy Lewis. It's therapy with movement.

Today was chemo day and my creatinine is at 3.2. This is great news and I hope it continues to move in that direction. Dr. Gregory is afraid my achiness is a velcade side effect and we're going to watch it.

Susan forgot her mother was flying in today for George's graduation next week and both Ben and George have concerts. Thankfully she remembered in time to drop me at Rush, run to Midway to get her mom and then make it back to Rush. Susan's mom is great company and I bought us all lunch on the way home at the Grapevine in LaGrange (the least I could do since she sat through my chemo). If you haven't been there you must give it a try. I haven't found one thing on the menu I don't like. That's saying a lot because my appetite isn't always great and frequently I think I'm going to like something and then see it and don't.

Took Matt in to see the therapist with me today. I feel like we need to communicate better regarding this illness and our expectations. I could tell this is is not his comfort zone (is it in any mans) but he was a great sport and at least I came away feeling like it did some good and as DTS (Desiree Tucker-Sorini) would say, It's all about me!" I only hope I haven't scared him for life and then he'll need therapy for post traumatic stress disorder.

Monday, May 17, 2010


Got to be honest, not feeling that great these last few days. Chemo tomorrow and I'll ask the nurse about some of my symptoms. I seem to be constantly battling a headache and my neck is always stiff and sore (yes Susan I can touch my chin to my chest). I'm very achy in general and it's not muscle related. It feels more like its in my bones. My right shoulder is still a problem from when I had the BMT and now my hips and legs are stiff and ache. I mentioned to Dr. Gregory that I had developed restless leg syndrome and she said she was hearing more and more of this. Now it seems to have developed into more of a constant ache in my femur, primarily my left leg. I wonder if this is a strange manifestation of the neuropathy. I think I'll ask on the Amy website. I'm sick and tired of feeling sick and tired.

Then again maybe its the weather. I'm sick of spring. Its just a big tease and I want Summer now!

Good lord I'm crabby today. I'm going to go work out with Lewis and see if that improves my mood.:-)

Wednesday, May 12, 2010


Had my second week of Velcade in my second session. It was uneventful and my creatinine was down to 3.5 from the high of 3.8 of last week. I would love to see it in the low 3's or high 2's but at least it didn't go up. I left a message with Dr. Whittier (my nephrologist (kidney doc)) as he was out of the office.

I didn't feel great last week and sort of assumed this was just my body readjusting to the Velcade and IVIG after my week off. Now with the creatinine being lower I wonder if it was my body fighting a virus or infection. I think I probably was a little more stressed out than I realized by the whole dialysis discussion. That also probably effected the way I was feeling. I'm feeling like I have a little more breathing room now that the creatinine number is lower.

Feeling good today. Wishing the same for everyone else

Monday, May 10, 2010


I miss me. I think that's why I find it annoying when people tell me I look good. My face is puffy from steroids and my hair is short and curly. When I look in the mirror I am always surprised by the person I see and it's very disconcerting. I don't look like me, at least not the me I remember. I've been told I look good in short hair (and yes, I know it's a compliment) but never in a million years would I have ever cut my hair this short. I liked my long hair. The Kahan thinks I have body dysmorphic disorder a psychological condition where the affected person is excessively concerned about and preoccupied by a perceived defect in his or her physical features. I hope she was kidding.

It's more than just the physical me that I miss. I miss the me that had more days when I felt good than days when I feel ill. I miss the me that was spontaneous and adventurous and could stay up past ten.

In mentioning this recently to a couple of friends and family, all have reassured me that I am still here, I am still me. While that is somewhat true I have come to realize that the person I was is to some extent gone. I don't think you can have an illness like this and not have it change you in some way. It's not all bad but it's different, I'm different. You see while I hope for a time when I will have more good days than bad, when I can be more spontaneous and adventurous I now know those days are a gift, not the norm. I miss that norm. I miss me.

Wednesday, May 5, 2010


Yesterday I started my second session on the Velcade. This also included the IVIG treatment. The first time I had the IVIG I had a bad reaction where the drip had to be stopped and I was given some steroids. The nurses said that while that could happen again it's unlikely. My Mom also reminded me that the first time I had the IVIG there was a mix up and I didn't get it on the same day as the Velcade. When I get the Velcade I also get a steroid so perhaps getting the IVIG together with the Velcade and steroid today made the difference.

That's the good news. Unfortunately my creatinine jumped from 3.2 to 3.8 in one week, not good news. Creatinine is a chemical waste molecule that is generated from muscle metabolism. Creatinine is produced from creatine, a molecule of major importance for energy production in muscles. Approximately 2% of the body's creatine is converted to creatinine every day. Creatinine is transported through the bloodstream to the kidneys. The kidneys filter out most of the creatinine and dispose of it in the urine. Creatinine has been found to be a fairly reliable indicator of kidney function. As the kidneys become impaired for any reason, the creatinine level in the blood will rise due to poor clearance by the kidneys. Abnormally high levels of creatinine thus warn of possible malfunction or failure of the kidneys. It is for this reason that standard blood tests routinely check the amount of creatinine in the blood. Prior to my BMT my creatinine level was 1.8. It needs to be below 2 for another transplant. Normal Creatinine levels are between 0.6 to 1.2. Once it gets up into the 4's and approaches the 5's one has to start considering dialysis.

Dr. Gregory's office had me call my nephrologist (Dr. William Whittier) to see if he wanted them to give me additional fluids. While the kidneys like to be wet it's a fine line and we don't want to overload them either. Dr. Whittier looked at the numbers and decided on no more additional fluids and said we would look at the numbers next week. Less than a half an hour later I look up and there's Dr. Whittier, what a guy! In looking at me he says I look like someone who has a creatinine level of 3.3 but the 3.8 level is of concern. I could be dehydrated, I could be fighting an infection or the amyloid could be winning over the kidneys. If the amyloids are winning I have to start thinking about my dialysis options. Ugh!

If the amyloid is getting the better of the kidneys does this mean I may have to add another chemo drug onto to the Velcade? That will be discussed (at Mayo and Rush) after this second round of treatments but I really hope that is not the case as I am feeling okay and can live with these current mild side effects.

Another thing that has concerned me lately is it seems since I've been getting these treatments I experience a feeling like my brain is like a record skipping. It's so hard to describe but it's like this little wave goes over my brain that makes me a little dizzy and then it passes. I refer to it as being lightheaded but it's different than that. It doesn't happen all the time and I think it occurs more when I am tired. I've mentioned it to my doctors and they don't really have any answers but they also don't seem overly concerned either.

So all in all I feel pretty well and it's still awaiting game. Keep your fingers crossed for a lower creatinine level.

Finally my Aunt Barbara is very ill. She is my mothers older sister and the only other living member of their immediate family. Please keep her in your thoughts and prayers she is a wonderful woman and we love her.

Thursday, April 29, 2010


My sister Kate asked what the IVIG is. Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is used for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. It takes about 4 hours and I get it on the first Tuesday that starts a new cycle. Because it contains pooled IgG the body can reject it or fight it but there are medications one is given to combat that. The first time I received it I had a reaction but this time they will know better how to premedicate me (or so they tell me). The first time when I had the reaction they had to stop the IV and pump me full of steroids. I turned bright red and my face was so swollen that as a friend of Lisa Grants says, I looked like a sunburned chipmunk. For days after that people kept saying "Well your color is good". I felt like I was on fire!

Tuesday, April 27, 2010


When I think of the Amyloid proteins attacking my organs I visualize Pacman gnawing away at my kidneys. As nice as it is having a week off from chemo I wonder are those little Pacmen thinking they're on a holiday from Velcade and nibbling away? I know I'm insane, right? But the mind goes where it wants. That said I met with Dr. Gregory at Rush today and she feels the treatment is going well so far. All my blood counts are good and my creatinine is at 3.2. I'd love for that number to be lower but at least it's not getting worse so that's good news for the kidneys. I start my second round next Tuesday May 4th when I will also have the IVIG.

Friday, April 23, 2010


Went to book club for the first time in probably a year. It was great to get out and see people but evenings are still tough for me. I've been experiencing restless leg syndrome so I did some additional research on side effects with Velcade and discovered that restless leg syndrome is one of them. I spoke with Dr. Gregory about it and she said she is seeing more incidents of this side effect. While there are medications that can help alleviate this she is hesitant to put me on any more drugs and while it's annoying it has not become debilitating yet. It just makes it a little harder to fall asleep.

Wednesday, April 21, 2010


While it is not my intention to post everyday I thought I might share a little incident my husband likes to refer to as my Roid Rage. Last night when I went to use the downstairs powder room (which is also the guest powder room) I almost fell into the toilet because the seat was left up. I called all the boys together to make it perfectly clear that was unacceptable behavior to which my husband replied that there are more of them than me and it just makes sense to leave it up. After I turned bright red reminded them I'm not the only woman who uses that facility and screamed "but it's rude!" I think I got my point across. Matt said they were actually doing me a favor because that way they don't pee on the seat so I suggested that they continue the favor by putting the seat back down. Really ... if it's that hard to aim than sit! The "discussion ended with me bellowing that there was no negotiating on this to which Matt left for the calm of the Jewel where he just happened to run into a male friend who was surprised it has taken Matt this long to figure that rule out. I can't remember who you are friend but I love you and thanks.

Tuesday, April 20, 2010


So today was week 4 of the first session of Velcade. I gave Susan Kahan the day off and my Mom drove in with me. She insisted we take the Stevenson ... need I say more, oh yes, Ogden Avenue. We had a lovely lunch at the Grapevine on the way home. Feeling fine so far just tired. I don't know why I find sitting in a chair for an hour being pumped full of poison and popping steroids so exhausting!

Monday, April 19, 2010

Update April 19, 2010

Some if not most of my friends will be happy to know I'm seeing a therapist. She's associated with Rush and has experience with chronic illnesses and cancer. I told her that I was starting to feel like I was being defined by my illness and she suggested I start a blog. That way I could update friends and family on my condition and progress so that when we talk or get together the conversation isn't centered on Amyloidosis or Amy. Now that is not to say that I don't want to talk about my illness and treatment. I still want anyone to feel that they can ask me anything it's just that right now I feel like it's the only thing I talk about.

So that said, lets discuss Amy. She's still here and she's a tough little bugger. The Bone Marrow Transplant (BMT) that we had so much hope in was not particularly successful for me. In fact I would argue it did very little other that further damage my kidneys (or as DTS calls them my Kennedys. I used to think that was a typo on her part but as she's a Republican and my kidneys aren't working well maybe there's more to it). I am ineligible for another BMT even though I have enough stem cells because of my kidneys. Three weeks ago I started on a chemo regimen called Velcade. It is a targeted drug which means that rather than going after every fast producing cell it goes after the bad ones. How it knows which ones are bad I do not know but this drug has been used with some success for Multiple Myeloma (which has some similarities to Amy) and Amyloidosis. Tomorrow, Tuesday I have my fourth treatment, I get a week off and then I do another four weeks, every Tuesday. In June my doctors at both Mayo and Rush will assess how it's working and decide what to do from there.

So far the side effects have been minimal and mild. Almost to the point where I was wondering if the Velcade was working at all, but yesterday I started to experience some neuropathy in my hands which is a known side effect. Pretty pathetic huh? I need side effects to feel happy! When I get the Velcade I also receive a high dose of steroids (Matt refers to my bouts of mania as Roid Rage). As the week goes on and the steroids wear off I crash and burn but that usually lasts for one day and then I start to feel better. All in all I really can't complain. I'm keeping my fingers crossed that the Velcade is working and enjoying the warmer weather. To all of you who are helping out by bringing meals, thank you so much. My greatest period of energy is between 10 and 3 so by dinner time I'm starting to run out of gas.