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.