Wednesday, January 25, 2012
Quick update on meeting with doctor...
Pleased to report it was all good news! My light chain is in the normal range and the bone marrow biopsy and fine needle aspirations were negative for myeloma! Some improvement was seen with the lesions on the MRI but I still haveva long way to go to heal those up. No big changes for now, just adding Metanx for the neuropathy from the Velcade. It hasn't been too bad, but it's noticeable and he'd like to see me stay on the higher dose because I still have so many lesions that need to heal up.
I realized how much I miss down there. Top notch care from wonderful people and the other patients and their families are just fabulous!
Thursday, January 19, 2012
Hello from Little Rock!
Back for my first check up on maintenance and as much as it's not pleasant to have a bone marrow biopsy, and two fine needle aspirations ... it is nice to see all the familiar faces. I meet with Dr. B tomorrow morning to find out how everything looks, so fingers crossed for all good news! I'm in the infusion clinic right now waiting for my Velcade and Zometa. Maybe it's a bit strange to miss this place, but it's just so much nicer than the one back home!
Wednesday, January 4, 2012
Happy New Year!
Feeling bad I haven't posted sooner, but it's been a busy couple of months with the holidays. The holidays were kind of a bust last year since my diagnosis came 3 days before Christmas. This year we had a much more relaxed time. Well except for the fall Oden took a week before Christmas that required 4 stitches in the forehead. And when I punched a whole in the foil roasting pan and set the smoke alarms off on Christmas day (then hit a squirrel on the way to pick up a new raosting pan at my mother-in laws house. Sometimes I swear we are like the Griswalds. The kids had an absolute blast though...and were spoiled completely rotten.
Unfortunately November was kind of a bust. I was sick literally the entire month. I started feeling it on Halloween and I didn't really feel better until the first week of December. I did two rounds of antibiotics and a course of an antifungal, but by Thanksgiving I thought I had broken a rib from coughing so much and my sinuses were so clogged I thought my head was going to explode. I was going to use Vick's Vapo Rub one night and I could not smell it even with my nose IN the container! It was miserable. After a chest x-ray a CT scan, and three days of flip-flopping they decided I had viral pneumonia. It made me realize it could be a long hard winter with both the kids in different germ factories every day, I try to be careful of what I touch when I'm out but it's hard to avoid them coughing and sneezing on me at home. I started feeling something again the week before Christmas, but luckily another round of antibiotics and antifungal did the trick.
Since my last post we had a fun Halloween with the wicked witch of the west and our little skeleton. If I had my other computer I would post some pics. They still have bags of candy in the cupboard...actually they still have bags of candy with last years valentines and easter candy too! I also celebrated a birthday, which I spent sick and getting a chest x-ray. Thanksgiving I spent in bed. Really I just needed a do-over for the whole month! December was hectic but fun with family visits, shopping, decorating, seeing friends, and even a cookie swap. I ate way way WAY too many cookies. Cookies for breakfast, cookies for lunch and dinner. Sneaking cookies while telling the kids they couldn't have cookies for breakfast. :)
We also had another birthday in the family on New Years Eve. My husband caught up to me again...thankfully I only have to suffer a month of hearing how old I am every year. We rang in the new year with friends and here we are a few days later settling back into the routine with the kids back at school.
I'm not one to wish away time anymore, but I am a little glad to see 2011 go. It was a long hard scary year. I tried to find the silver linings along the way though and despite all the madness there were quite a few. The best was all the amazing and inspiring new friends I met along the way. I'm very thankful treatment has been successful and that I got through things pretty smoothly. It's still a whole change in perspective though. There is definitely anxiety of a recurrence, but I don't spend too much time thinking about it. I just can't. It will be what it will be and I don't have control over it so I just have to keep living my life and not let it paralyze me.
I go back to Arkansas in a couple of weeks for MRI's and a bone marrow biopsy to see where things are. My light chain is still normal, which is a good sign but the MRI's and bone marrow biospy will tell us more. I'm hoping to see that some of the bone lesions start healing now that I've been on Zometa (bone strengthening) for several months. We want the lesions to heal because the damaged bone environment promotes growth of the cancer cells and would likely be the place a relapse would get started.
As far as maintenance goes, things have been going pretty smoothly. Most weeks I get some tingling from the Velcade about a day or two after the injection. I also get a small local reaction at the injection site. Just some redness and a little tenderness. The dex is still the dex. Coming down the next day stinks, I'm definitely edgy and grumpy for a couple of days. We also figured out that the Revlimid was giving me a skin reaction. I noticed in November that my face was very dry and peeling, and almost blistered in some spots. I thought at first it was dry skin from the season change, but no amount or type of lotion seemed to help. Thanks to google I discovered peeling skin can be a side effect of Revlimid. I let my nurse in Arkansas know and she had me hold the Revlimid for 2 weeks to help figure it out. The peeling improved greatly by the second week so they ordered a slight dose reduction. I've been on the lower dose for 3 weeks now and I have some dryness but much more mild than before. The nurse told me it's caused by a heightened inflammatory response. I have very sensitive skin anyway and also have rosacea, which is itself an inflammatory condition so maybe it's not so surprising.
So that's where we are now, it's a new year and we are hoping it will finally be a year with no crazy surprises. Although after this year, I know we can take anything that's thrown our way. :)
Unfortunately November was kind of a bust. I was sick literally the entire month. I started feeling it on Halloween and I didn't really feel better until the first week of December. I did two rounds of antibiotics and a course of an antifungal, but by Thanksgiving I thought I had broken a rib from coughing so much and my sinuses were so clogged I thought my head was going to explode. I was going to use Vick's Vapo Rub one night and I could not smell it even with my nose IN the container! It was miserable. After a chest x-ray a CT scan, and three days of flip-flopping they decided I had viral pneumonia. It made me realize it could be a long hard winter with both the kids in different germ factories every day, I try to be careful of what I touch when I'm out but it's hard to avoid them coughing and sneezing on me at home. I started feeling something again the week before Christmas, but luckily another round of antibiotics and antifungal did the trick.
Since my last post we had a fun Halloween with the wicked witch of the west and our little skeleton. If I had my other computer I would post some pics. They still have bags of candy in the cupboard...actually they still have bags of candy with last years valentines and easter candy too! I also celebrated a birthday, which I spent sick and getting a chest x-ray. Thanksgiving I spent in bed. Really I just needed a do-over for the whole month! December was hectic but fun with family visits, shopping, decorating, seeing friends, and even a cookie swap. I ate way way WAY too many cookies. Cookies for breakfast, cookies for lunch and dinner. Sneaking cookies while telling the kids they couldn't have cookies for breakfast. :)
We also had another birthday in the family on New Years Eve. My husband caught up to me again...thankfully I only have to suffer a month of hearing how old I am every year. We rang in the new year with friends and here we are a few days later settling back into the routine with the kids back at school.
I'm not one to wish away time anymore, but I am a little glad to see 2011 go. It was a long hard scary year. I tried to find the silver linings along the way though and despite all the madness there were quite a few. The best was all the amazing and inspiring new friends I met along the way. I'm very thankful treatment has been successful and that I got through things pretty smoothly. It's still a whole change in perspective though. There is definitely anxiety of a recurrence, but I don't spend too much time thinking about it. I just can't. It will be what it will be and I don't have control over it so I just have to keep living my life and not let it paralyze me.
I go back to Arkansas in a couple of weeks for MRI's and a bone marrow biopsy to see where things are. My light chain is still normal, which is a good sign but the MRI's and bone marrow biospy will tell us more. I'm hoping to see that some of the bone lesions start healing now that I've been on Zometa (bone strengthening) for several months. We want the lesions to heal because the damaged bone environment promotes growth of the cancer cells and would likely be the place a relapse would get started.
As far as maintenance goes, things have been going pretty smoothly. Most weeks I get some tingling from the Velcade about a day or two after the injection. I also get a small local reaction at the injection site. Just some redness and a little tenderness. The dex is still the dex. Coming down the next day stinks, I'm definitely edgy and grumpy for a couple of days. We also figured out that the Revlimid was giving me a skin reaction. I noticed in November that my face was very dry and peeling, and almost blistered in some spots. I thought at first it was dry skin from the season change, but no amount or type of lotion seemed to help. Thanks to google I discovered peeling skin can be a side effect of Revlimid. I let my nurse in Arkansas know and she had me hold the Revlimid for 2 weeks to help figure it out. The peeling improved greatly by the second week so they ordered a slight dose reduction. I've been on the lower dose for 3 weeks now and I have some dryness but much more mild than before. The nurse told me it's caused by a heightened inflammatory response. I have very sensitive skin anyway and also have rosacea, which is itself an inflammatory condition so maybe it's not so surprising.
So that's where we are now, it's a new year and we are hoping it will finally be a year with no crazy surprises. Although after this year, I know we can take anything that's thrown our way. :)
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