It is with great sadness that I report that Susan passed away on December 28 after her 4 year battle with Amyloidosis.  Our families are grateful for all the support and assistance we have received from all of Susan's friends.  She will be missed.    Thank you very much.      Matt

8/30/2012

I have discovered that I don't like blogging when I have nothing positive to say and unfortunately that has been the case for the last few months.

I am on dialysis. I started at the end of June. Unfortunately my fistula (Hemodialysis fistulas are surgically created communications between the native artery and vein in an extremity) did not mature properly so I had to have a permcath installed. This functions as a bridge device during fistula maturation or a long-term vascular access for hemodialysis. I am having surgery to redo the fistula in the next couple of weeks. Keep your fingers crossed this one takes. I put off dialysis for as long as possible and I feel better overall.

The amyloidosis is not in remission so I am not eligible for a kidney transplant. The best that can be said at this point is that it is being managed. I would like to be more aggressive in going after it but when we have tried that my platelets have dropped. Platelets help the blood clot. I am thinking it's time for another trip to Mayo but my dialysis schedule complicates things and I'd have to make arrangements  to have it done there. I keep thinking it would be easier if I was accessing the fistula as opposed to the permcath but I am weeks away from that.

As I mentioned, the last few months have been challenging and the summer has flown by. We take Ben to The University of Denver this weekend to start his freshman year. He seems ready and I am so proud of him but he will be sorely missed by us all.

To those of you who follow the blog and have provided meals and rides, a big thank you. It is so appreciated. I am in dialysis 3 days a weeks for 3 and a half hours and I am pretty drained afterwards. 

2/29/2012

Never will I be so happy to see a month go! February has sucked. I won't go into the litany of all the things that have gone wrong this month, just trust me when I say March 1 can't come fast enough.

My amyloidosis is back with a vengeance. I am back on chemo, this time Melphalan. This is the same stuff they had me on for the stem cell transplant. I begged Dr. Buadi not to put me on steroids and he agreed to try it but I’ve found a new doctor here who strongly urges me to reconsider. So I have been looking fondly in the mirror trying to enjoy for the moment the face I have in preparation for the bloating and misery of life on steroids.

I don’t want to go into all the details of my lousy prognosis from Mayo. I’m exhausted and depressed by it. I feel like it’s 2 steps forward 3 steps back. Whereas before I had Amyloidosis with kidney involvement I now have Amyloidosis with kidney failure.

Here’s the thing. I am consulting with some new doctors at Loyola for second opinions and I am feeling less hopeless about things. However I am not in a great place in dealing with this latest spate of bad news. I’m working on it but it’s a process and Amy and I have been at war now for three years.

While I hope I will be kept in your thoughts and prayers, please, please, please, I beg of you, no platitudes, nor emails of people handling adversity well or even ones that are supposed to be life affirming. I am in a place right now where all these things do is make me feel worse about how much trouble I am having right now accepting all this. I will get to a better place. I am getting help and as I said feel more hopeful. All I need from my family and dear friends is understanding and patience. I good joke or two wouldn’t hurt either.

9/14/2011

I was typing a letter to a dear friend who contacted me recently and I was telling him about my blog and realized once again I have not posted in ages. Usually that is because things are not going well and I can't think of anything positive to say but this time I am happy to report the opposite. But first let me make a correction from my last entry. I dated it July but I had to have written it in August as I didn't go up to Mayo until the end of July.

I have been off chemo since July 26 and in the last two weeks I have started to feel human again! The Reglan has helped with the gastrointestinal issues and my energy level is up. I am feeling less deserted by Mayo and more inclined to try some alternative treatments as opposed to racing off to Boston. I have been having blood work done weekly and my creatinine level is back below a 4.

I see Dr. Gregory tomorrow. I'm interested to know what she thinks.

7/9/2011

Be careful what you wish for. I went up to Mayo wanting a change. I need a better quality of life. I have been sick too often and feeling just generally miserable in between. I kept asking myself how bad it could be if I just stopped the chemo.

I’m in the process of finding out.

At this point in time Dr. Buadi is uncertain what real benefit there is to me continuing ongoing Velcade therapy. My monoclonal protein levels, in particular the light chain levels, are quite low. He has recommended that I stop the chemo and go off a number of the drugs I am on. We will continue to monitor these levels without intervention. If the immunoglobulin free light chains increase and the kappa-to-lambda ratio becomes more abnormal we will consider some other form of chemo. Dr. Buadi believes that most of the symptoms I am having are related to my worsening renal function and going on dialysis would help. He has also recommended that I see a local cardiologist as my troponin is down, but NT-proBNP is up.

Troponin is a complex of three regulatory proteins that is integral to muscle contraction in skeletal and cardiac muscle. BNP is a neurohormone produced mainly in the ventricular myocardium and is a known regulator of cardiovascular function that is widely used a marker of heart failure. The precursor protein pro-B-type natriuretic peptide is cleaved to form BNP and the amino terminal NT-proBNP, and both of these circulate in the plasma. Elevated NT-proBNP levels were strongly associated with prevalent AF (atrial fibrillation).

Dr. Leung, my Nephrologist at Mayo found some inconsistencies between my monoclonal protein levels and my kidney function numbers. He agrees with taking me off the chemo and several of the drugs I was on that are related to it but is not recommending dialysis just yet. He has put me on a blood pressure medicine and wants me to have blood work done weekly to see if my kidney numbers improve.

I had an Esophagogastroduodenoscopy (EGD) while I was at Mayo because prior to and since my most recent hospitalization I have had terrible stomach issues. While this has been great from a losing weight standpoint it is extremely tedious to have an upset stomach 24/7. Dr. Buadi has put me on Reglan. Since it appears I have amyloid in my digestive tract which as in the heart and kidneys causes muscle stiffening the Reglan may be helpful as it increases muscle contractions in the upper digestive tract. This speeds up the rate at which the stomach empties into the intestines.

So I came home feeling a little deserted and not particularly hopeful. It was like they were all saying to me that they’ve tried everything and it hasn’t worked so lets give this a shot, lets do nothing for a while. I guess its kind of what I wanted and yet it feels like no plan and I am a planner. I have been revisiting the angry stage of my grief by screaming at inane commercials on television (seriously they pay for these things?!?). I don’t know why that’s where I am channeling my anger but it seems to be working as even now I feel a little less pissed off.

I am considering going out to Boston University for a second opinion. Like Mayo it is a center for excellence concerning Amyloidosis. I have also been getting a lot of advice concerning some holistic options. I did speak today actually, with Dr. Buadi regarding that and he recommends caution. Perhaps my first step should be BU if things start to get worse or I can’t get any relief from my stomach issues.

So there you go. I’m once again treading water. I hope I can get some relief from the Reglan.

7/16/11

I started my blog at the suggestion of my therapist; I felt I was being defined by my illness. The blog would be a way I could update friends and family on my condition and progress so that when we talk or get together the conversation wasn’t always centered on Amyloidosis or Amy. It was also a great way to think through things and get them off my mind.

One could make the assumption that since I have not updated my blog since March that things are going well but in all honesty I have been struggling both physically and mentally.

Declan asked me the other day if I ever catch myself talking to myself and if sometimes I actually do it out loud? My answer, everyday! It might be time for me to get a few things off my chest. Ya think?!

Last summer we all came up with the brilliant idea that we (meaning Dad) should rent a villa in Provence this summer to celebrate his turning 80 this year. Thankfully my father is a good sport about all of us helping him find ways to spend his money on us! The trip was planned for June.

All through my illness I set goals for myself and making it to France was a big one. I just needed my kidneys to stay healthy enough to keep me off dialysis and to taper off on my chemo to make it all happen.

When I went to Mayo last January Dr. Buadi put me on a new chemo schedule. The new plan is to continue the velcade but instead of 4 weeks on and one week off I will go to 4 weeks on and 4 weeks off. I was thrilled because this tied me down a lot less than the other schedule and would allow me to go to France.

Unfortunately this new schedule has been very challenging for me. The reentry into Velcade after a month off is proving to be more difficult than I expected. It's clear to me now that some of the side effects I was attributing to the steroids were actually from the velcade. On top of that when I get sick I get SICK. No minor head cold or bug for me baby. I get ghastly ill. While I was lucky enough to survive pneumonia with out being hospitalized I was not as lucky when I became ill at the end of May into early June.

I ended up in the hospital with dehydration the week we were supposed to leave for France. The boys and I were supposed to go for the entire 3 weeks but now that I was hospitalized there was no way I was making the flight on June 10. Matt and I decided to

Send the boys on to France with David and his family and we would meet them a week later.

All my doctors and nurses did their best to get me well enough to fly on the 17^th and my father generously bought a business class ticket for me. He offered to buy one for Matt as well but my frugal husband elected to fly coach. I honestly don’t think I could have made the trip if I hadn’t had the upgrade and the ability to lie flat.

I think it was very hard for the boys to leave me behind in the hospital the previous week because they looked very relieved when we arrived. The house in Provence was amazing. Matt and I had the ground floor bedroom and I spent the first week there recuperating.

Into the second week we had plans to spend our last 3 days in Paris. Originally Matt was not going to be with us but with all the changes that had been made he stayed the full 2 weeks. Sally Kalmbach had arranged for a driver/guide and boy did we see Paris. Roger our guide was amazing. There was not a question he could not answer and his energy was phenomenal. I normally would not pack so much into 3 days as we had very little down time but since my health has been so lousy this winter and spring I was afraid this might be the last time I would be able to make a trip like this. I wanted to see Paris through my children’s eyes even if they were a bit bloodshot and red rimmed. It was challenging but we had an amazing time.

We are back now and I am back on chemo. Once again the reentry was brutal and I was quite sick Tuesday evening and all day Wednesday. I am back up at Mayo the end of this month and some adjustments have to be made. I need a better quality of life. Good days are too few and far between as well as they just aren’t that good, they are just ok. I hate to complain but it’s very trying always feeling ill.

3/8/11

I have been terrible about posting lately. I am in my month off chemo phase and I've just been enjoying the freedom. Unfortunately I caught a cold that morphed into pneumonia and I've been down for the count since last Thursday. Thankfully I didn't need to be hospitalized like last year.

I'm finding it's a little hard to stay positive when it seems like I just can't scrape together a little time when I feel well. I hate to complain because I know in so many ways I am lucky and things could be worse. I guess it's all part of adjusting to a life style with a chronic illness. Just about the time I think I've wrapped my head around it I feel like I have a set back. I know I'll get back to a better place mentally but its exhausting sometimes.