Cancer Still Sucks, and some good news too!

Hey Everyone!

So its been a crazy few months since my last update...We've had lots going on in our family since I last blogged! Both my handsome little men had birthdays (4 & 11!),  Lindsey had her dance recital (she was a super star!) Tyler had an amazing baseball season (more on that later!) and we started going back to camp. Oh and Kev turned 40!  I've been enjoying my time off with the kids, and getting stronger every day.

I had a couple appointments in June with my Oncologists and Endocrinologists and got great news at both. My PET Scan had come back all clear (no new cancer lessions and the one I had was all but gone- yeah!) and my Adrenal Gland tests showed a recovery so I was able to come off the steriods (double yeah!) I left those appointments on quite the high, feeling like I had breezed through this diagnosis and could put all of this behind me and not have to deal with it anymore for hopefully a VERY long time! I guess I got a little too cocky....

The last couple months, I've started having some issues. I have some pretty significant bone/joint pain. Some days its not that bad, but other days I have to take pain medication to get through the day. Its mostly in my tailbone, knees and rib cage. On a good day I feel just a little achy, on a bad day I feel like a 90 year old  who hobbles around all creaky and slow. Its annoying, but that alone wouldn't be so bad. I can handle some aches and pains if I'm otherwise cancer free right?

I met with my Oncologist again today and had a check up. I told them about my assorted aches and pains and had my normal bloodwork tests done. My Blood Counts are slowly chugging along back to normal. I'm still in the red zones, but very close to (low) normal numbers. It won't be long now. My Liver function tests show there are still some issues, and they will continue to watch that closely. The Drs seem to think the aches and pains may be hormonal issues and when I see the Endocrinologist again in August they will re-run all those tests to determine if more hormone therapy is needed. They seem to think I might need to go back on the Steriods, that I came off them too soon.

I also got the results back from one of the last 2 outstanding "Cancer" tests we were waiting for. I had a Bone Marrow Biopsy done at my last visit in June and the results were in. While the bad plasma cells had been cut in half, there were still some hanging out in there. Unlike a Multiple Myeloma patient, whose bone marrow can have 30, 40, 50% bad plasma cells, I had initially only had less than 10% and a 50% reduction of them is great, but the fact that we have done all this work, and I can't say I'm Cancer free makes me sad.  Going into this I was told that my cancer, POEMS Syndrome, was a chronic, potentially terminal disease, that is never considered  "cured", but there are cases where people have gone on to live 10, 20+ years without having reoccurances.  I firmly believe with all my heart I will be one of those people. I will be able to say I'm currently Cancer free ...but to hear we still have more work to do to get there was a little disheartening.

So what does this mean for me?

Well, first I have to go back on Chemotherapy pills, but at low dose "matinence" levels. I'll start seeing the Drs once a month again to closely moniter my bloodwork, as this Rx can lower my already compromised blood counts.  We will repeat the bone marrow biopsy in 3 months (OUCH!) and then again in 6 months. There was talk of a second Strem Cell Transplant and new Chemo treatments if the bad Cancer cells start to increase, but I'm very hopeful it won't come to that....I know I can't get my three children to behave but damn it, these Cancer cells WILL cooperate!

Now, enough about me, I said there was some good news and there is!

Lindsey is doing AMAZING! She started her bi-monthly IV treatments for her Colitis and she is doing great! She's such a trooper with her IV's and the medicine is working wonders. She's back to the Lindsey we all know and love, feeling great, looking great and thinking she's the next Selena Gomez! I'm so thankful that things are looking up for her!!

Linds getting her IV Remicade

And Lastly, if I could make a shameless plug,Tyler is playing on a summer baseball team that is raising money for Cancer.  I'm so proud of Tyler for deciding to spend half his summer raising money for the Jimmy Fund so more research can be done to knock this awful disease out of the park!

Tyler will be involved in several fundraisers this summer (A Carwash, Tagging etc) and giving up his time to raise as much money as possible. He has also got to play summer ball against some of the best players in the region! We've had a blast at both the games and the fund raisers, but we still could use help raising the $200 he needs for his personal goal. Any donation would help and be greatly appreciated ($5, $10) and if you can donate, you can use the link here: http://www.jimmyfundevents.org/littleleague2011/tylerw

Once again, thank you all so much for all your love and support!!! I didn't get the best news today, but it could be SOOOO much worse, and so I am very grateful that I am where I am today. I love you all for keeping my spirits up and letting me know how much you love us! I'm attaching a couple new pictures of the kiddos enjoying their vacation! I hope you're enjoying the lazy days of summer with the ones you love and hope to see you soon!!

XOXOXO,
Tara =0)