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.

2/9/2011

Wednesdays used to be my high energy days but since being on this new chemo schedule and less steroids it has become a more challenging one. It's just my stomach and I guess it's not all bad because I'm still carrying around more weight than I would like.

I've been having some issues with my feet. Frequently I get a sharp pain in the ball of my foot that makes it hard to walk. This is not the way the neuropathy was described to me but I'm wondering if this is the way it manifests in me. I also get pain in my big toes. At first I thought it was an ingrown nail but it comes and goes and can be so painful even having that toe rub up against a bed sheet can be agony. I take allopurinol to combat high uric acid which can cause gout but I have to be careful how much of that I take because of my kidneys. I see Dr. Gregory next week so I'm going to run all this by her.

Yesterday I got an email regarding a memorial service for someone I know who has been battling cancer. She had a bone marrow transplant but struggled afterwards and obviously didn't make it. So much of this is luck. Certainly bad luck in getting ill but I know another amyloidosis patient who had a bone marrow transplant and went into remission, so some good luck as well. I survived my bone marrow transplant (good luck) but it didn't last and I continue to manage the illness. We all want answers. We all want it to make sense but it doesn't. Why does one treatment work well for one person, somewhat well for another and not all for others? Are some of us more blessed than others? I don't believe that. Like I said I think a lot of it is luck. I could be wrong but it works for me. In the meantime my heart breaks for her family who must find a way to go on without her.

2/7/2011

The reentry into Velcade after a month off has proven to be more challenging than I thought. The first week I caught a stomach bug from Fox and had to postpone my chemo for a day. The rest of the week and weekend I didn't feel great but was unsure if it was the bug or the velcade. The second week was not as bad stomach wise but it's clear to me that some of the side effects I was attributing to the steroids were actually from the velcade.

My creatinine has been inching up and last week was at 3.55. That can happen when you are fighting an infection or virus but if it's up again this week I'm going to contact Dr. Leung and see if he wants me to go back up on the steroids. Right now I take 2 on Tuesday and 2 on Friday. I feel better on the lower steroids but I have to maintain my kidney function as well.

The new Cancer Center at RUSH is beautiful and running fairly smoothly. The check-in, check-out process still needs some tweaking in my opinion but everything else is smooth sailing. There are many new faces and thankfully all the old ones as well.

Because of the new procedures at the Cancer Center I haven't scheduled anything with Dr. Gautier (therapist) since I returned from Mayo but I'm feeling good about things overall. I'm still having billing issues on that end and it's frustrating because all someone has to do is change a code. Unfortunately I am not the person that can do that even though they keep calling me.

1/16/11

So I am back from Mayo and as you can see by the look on Dr. Buadi's face he is happy.

Am I in complete response? No. Am I surprised? No. Dr. Gregory did a good job preparing me before I left and I am grateful. Am I responding? Yes. Do my numbers continue to improve? Yes.

The thing is Amyloidosis is not curable. In most cases it is an illness you manage. While some are lucky and go into a remission or a complete response, many do not.

Aside from a few minor hiccups I've led and continue to lead a pretty privileged and wonderful life. I think to some extent that has allowed me to believe that I would be one of the lucky ones who would go into complete response. So far I am not. Here's the thing though. The illness is being managed and that is a success because for most of us with Amyloidosis that's the best we'll do and there's nothing to say I may not go into complete response sometime in the future.

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. This is a maintenance plan and the thinking is I will continue to respond with this treatment. I am thrilled because this ties me down a lot less than the other schedule.

Dr. Leung, my nephrologist at Mayo prescribed Aranesp. Aranesp is a Darbepoetin alfa injection used to treat anemia in people with chronic kidney failure. This should help with my fatigue. He has also prescribed Spironolactone. Spironolactone is used to treat certain patients with hyperaldosteronism (the body produces too much aldosterone, a naturally occurring hormone that increases the reabsorption of sodium ions and water and the release (secretion) of potassium ions in the distal convoluted tubles of the kidneys.) Too much aldosterone can increase blood volume and, therefore, increase blood pressure.

I am scheduled to go back up to Mayo in 6 months and it is my intention to use these next 6 months to get myself in better shape. When I relapsed at about this time last year I was still so weak from the Bone Marrow Transplant that I started my chemo treatment in pretty bad shape. I want to build up my stamina and strength not only to improve the quality of my life but also so that if I relapse again I am not so weak.

I continue and will continue to back off of the steroids. The key is to keep my creatinine under 3.5. If it starts to go back up then we'll reassess. This is the bad part of not being in complete response. As long as I continue to produce the amyloid protein I am not a candidate for a kidney transplant so managing my kidney health is paramount. Luckily my kidneys can function well enough at my current creatinine level that I do not at this time need to worry about dialysis or a transplant. In fact I am losing less protein in my urine even from when I was here last Sept. which is great news.

Dr. Buadi would like me to consult a sleep clinic. I guess it is quite common for amyloid patients to develop sleep apnea and everyone who has had the misfortune of being around me when I sleep says I appear to be struggling to breath. I know I am not waking up rested.

I am trying to think if I've forgotten anything. My attitude is good and I feel a little less like I am treading water now that I have a new plan. I needed to accept the reality of the fact that this illness for me is in all likelihood something I will manage for the rest of my life. I think there was a part of me that always knew that because I named this site Susan and Amy not Susan beats Amy. Amy and I are in this together and I just need to keep the upper hand. However, she is still an unwanted guest and would not be missed if she decided to leave.

1/1/11

HAPPY NEW YEAR!

I can't believe it's been over a month since my last post. I'd like to say it's because I have been feeling great and busy with the holidays but it's really been more about this feeling of treading water.

I finished my last scheduled chemo on December 21 and I am going up to Mayo January 10-13. All my numbers have remained steady, meaning not much change from when I went up to Mayo in September. Dr. Gregory has prepared me for the possibility that I may not be in complete response. That does not necessarily mean I will continue on the same treatment going forward. I still may be able to switch to some type of maintenance program or maybe they'll suggest I try something different entirely. There is still the chance I am in complete response. Dr. Gregory is looking at the numbers we have here at RUSH and more detailed tests like a bone marrow biopsy are to be done at Mayo. I have to say though that I appreciate her candor because she knows how devastated I was last September.

I am down considerably on the steroids and my face is a little less round although my body is still shaped like a barrel so I have no waist. I don't miss that crawling out of my skin feeling and I think my roid rage is less, but I do miss the extra energy I had. I get tired more quickly and out of breath with very little exertion. This can make me quite cranky. Matt wasn't feeling well right after Christmas and you often don't appreciate how much someone does for you until they are not available to do it. By the time he was feeling better I was wiped out.

Thanks to the largess of David and his family we are in Moonlight Basin Montana just on the other side of the mountain from Big Sky. We have gotten a ton of snow which has been great but unfortunately yesterday the temperature was well below zero and neither Matt nor Fox ventured out. I of course remain snuggled in the condo reading and watching HGTV. The temp is supposed to go up to a balmy 3 degrees today and as it is our last day everyone (sans me) will give it a go. It is so beautiful here and we are not so high in the mountains that I have been particularly bothered by the altitude. Then again, as I mentioned I haven't done much other than lounge around since we've been here.

A funny note. When we were boarding the plane in Chicago there were a number of flights near our gate going to warmer climates. As we boarded I was a bit slow and the rest of them family were way ahead of me. When I got to the door of the plane I found Ben there waiting for me. He was afraid I'd hopped over to one of the beach vacation flights. Does this boy know his mother or what! It's great to be loved.

I hope everyone had a wonderful holiday season and wish you all the best for 2011.