Checking in....

......time is flying by, I am so happy that Spring is now here, but do wish our weather would be more Spring-like, it's cold and we even had snow the on the first day of Spring.   Thankfully, it did warm up the next day and the warm Spring sun melted away all the snow.

      My Opdivo treatments are gong well, still having them every two weeks, but I am not noticing that I am pretty wiped out for up to a week each time and have had more nausea and belly aches.  Nothing extremely painful, but some days were pretty lousy and I spent a lot of time in bed.  NO fun!
I'm finally feeling better, but my next treatment is coming up on Tuesday and that's only a few day away now.

     It's hard to believe, but it will also be One Year since I was first diagnosed, this Sunday (Easter), on March 27th.  A date, I'll never forget.  And boy have I been through a lot in that year.   Sometimes I feels like I've had Cancer much longer and then in some ways it's hard to believe a year has passed.   But, considering I have Stage IV Cancer that had spread to my brain before I even knew, I am thankful to be alive and happy that my treatments are working.    Because my cancer is "Late Stage" I am technically still considered "incurable" but treatable, so that's also a good thing. Just one year ago, Opdivo was not even FDA approved for my type of Lung Cancer and I know in many ways I'm now lucky to that I have it.

    For whose of you who may be new to this blog, I had a specialized form of radiation (SRS) last May for my brain tumor and it has been gone since -- YAY!  I then had chemo for my Lung tumor and that was also gone in August, but came back with a vengeance in November. I then had a quick course of high dose Radiation done, and started on this new treatment (also infused, like Chemo), but is a form of  Immunotherapy.  Now many feel that this type of treatment will eventually be what cures cancer.   I  hope they are right.

   As you may remember I almost did not opt to try this drug.  The side effects (some fatal and ver serious) really scared me, and that time, with it also being so new, I was too scared to try it.  But, I did some research, talked to my PCP and also has several talks with my Primary Oncologist (Dr. Sunkara) and decided to try it.   So far, so good, but I know that for many, the "bad" side effects do not show up at first, so we are being very cautious and I have a long list of changes that I must immediately report to my the team.  I have had the belly aches and that did scare me, but the Abdominal CT scan was fine, and they will continue to monitor me.  I also have lab work done every week, to watch for any other changes, the drug is known for.

    One of the many reasons I chose to try it was because of the people I met through an online Medical forum, who are one Opdivo, many were part of the Clinical trials and reading their stories what made me chance my mind.  The group is on Inspire.com and has several sub-groups all based on types of cancer and other illnesses.   I also found, CancerGrace, a medical based group with a wealth of information for patients or their families.

    My new task in life is trying to organize my life (stuff), and as a Paper-crafter (a hobby I LOVE), I know have literally 100's of items that I'm now going to slowly sell.  There is simply no way my dear Hubby will ever know what to do with all of this and right now we can put the money to good use toward all my medical expenses.   You can find all my "Craft Sale Goodies" on my craft blog - ThePurplePlace.  Please stop by and please feel free to share!   

     Wishing you all a wonderful weekend and for those of you who celebrate it, Happy Easter!

More on my Cancer and CT Results...

   After a fun morning at a Stampin' Up workshop, I returned home to head to the hospital for my bi-weekly lab work and appointment with Dr. Sunkara.   When I arrived there I found out that I would not be having an Infusion, today, as planned, since it's too early and it needs to be two weeks from the last one, before insurance will cover it.  No shock there, and I guess I'm happy to get a little break and will be back there next Monday for Labs and Tuesday for Opdivo # 7.

     Luckily, I did spend some time with Dr. Sunkara, and as I pretty much knew, I'm doing well with the cancer and currently in a form of remission, but as of now, there is still no known cure for my type and stage of lung cancer!   It's still treatable and I'm still fighting, but I have to face that I may very well come back, as it did before.   I'm NOT giving up and I know this will be a hard battle, but I still HOPE to win it. The Opdivo and the Radiation has helped greatly, but as I've known since my original diagnosis (almost a full year now 3/27/16), having Stage IV cancer that has spread (to my brain), is pretty bad....!

      I'm a bit down, but I think in my heart, I already knew this and was a bit too excited about the tumor being gone again.   I guess I had hoped the Opdivo may be the miracle I needed, and while it may be, right now it is not been proven as a cure for late stage lung cancer. Even so, it will continue to boost my immune system to be able to better fight the cancer cells. If this does not work, there are still more options, including other types of Chemo and more radiation, (which I would hate), but never say never! For now I'm stable...and in the cancer world that's actually a good thing--so I'll continue to take one day at a time....and continue to HOPE for my cure.

    And for anyone who may be wondering about the costs....it's crazy high and this year with Hubby's health insurance, we have a $3,000 deductible and then have to also pay 10% co-insurance until we had paid another $7,200 out of pocket.  It's crazy and no wonder we are feeling broke and can no longer save a dime.   We did start another HSA Account, which comes directly from his Paycheck at $120 per Pay period (by monthly) not to mention the costs we pay toward our health insurance and an FSA account we have for vision and dental.   And my husband is now sixty years old and works close to 60 hours every week...this is awful and I hate it.   It's so unfair and although I get a monthly payment from Social Security Disability, it's peanuts and this year, there was no increase?   Not for me or any one else who is collection Social Security, which is crazy, since we all know it costs more and more to live every year, and that's for healthy people with no medical costs.    UGH!!

    The cost of each Opdivo treatment is billed to our Aenta Insurance at about $35,000.00 each.  This is just ONE of my treatment bills submitted to Aetna -- "Service Date: 02/26/16 LISA (You) ADDISON GILBERT HOSPITAL - $37,286.60" It makes me sick --WHAT if I did not have insurance and they do not cover it all. I have to pay $ 644.03 o that bill (deductible and co-pays)...and that's just ONE of many!!   This is another one -- Date of Service: 02/01/16 LISA (You) ADDISON GILBERT HOSPITAL $38,112.22 and for this one, I have to pay $ 666.04 -- Not to mention that I already paid almost $3K in bills that all went to the deductible....sucks to be sick..!!  INJECTION, NIVOLUMAB (the drug name for Opdivo) -- Service provided on 02/02/2016 - Amount $36,509.55.

    No wonder I feel down..not only and I friggin' dying from this disease, it's taking all our money now too!    I just want to scream......right now it really sucks....!!!

CT Results...

---are wonderful!   My lung tumor is GONE!!   I think I am still partially in shock, but I am SO HAPPY!

   I saw Dr. O'Meara, (my Pulmonary Oncologist) today and was thrilled to learn the the CT Scan from Wednesday shows no sign on the tumor, except a tiny "blip" which they consider to be scar tissue.  On top of there is also so sign of Cancer that showed in my abdominal CT Scan, WOOHOO!!

   I know I probably should be screaming from the rooftops and believe me, I am thrilled, but if you have followed my journey you'll know that I had this same great news in August, when I learned that both tumors (brain and lung) were gone.   I'm still super happy that my brain tumor has never re-occurred and hope it never will--but I am cautious with the lung tumor, since we know that it already came back one, and was then larger and more aggressive.

  At this time we are not sure if this is a results of the "Opdivo" treatments, the Radiation, I had in November, or a combination of both.  When I had my first follow up CT Scan after the Radiation, the tumor had shrunk, and that was at the very beginning of the Opdivo Treatments, so we all think that was a results of the Radiation.  I also learned today that "Radiation" can continue to work for up to a full year after treatment, which is also great news.

   Dr. Sunkara (my Medical) and primary Oncologist, also met with the Radiologist to review my abdomen scan to be sure there is 'nothing' there and they were happy to report there is nothing they see nor any sign of colitis....which is wonderful.

   Why, I've been feeling so lousy and tired, is very like still a bit of jet lag and also likely from the treatments, which will continue.  I'll be back the AGH on Tuesday for my labs and my visit with Dr. Sunkara and she does plan to continue the Opdivo Infusions with my next one scheduled for Wednesday morning!

   I am SO happy, but again being cautiously optimistic.   I really want to speak more with her and ask if this is consider a form of "Remission" and if it's accurate to now consider myself to be Cancer Free!  It sure feels good and I'm hoping to celebrate this weekend.  I am feeling better and less tired, which is also great!

   Special thanks for everyone who continues to pray for me, send me happy thoughts and for all the encouragement and support you have all provided to me.  I feel like this is a bit or a miracle and now hope and pray it stays gone forever!    

The good and the bad....

Well the good news is that I had a wonderful trip to San Diego and despite lots of little issues, overall I had fun and was so happy to spend a lot of time with my Son, Brian, my friend, Pat and also met two online crafts friends, while I was there - (Barbara and LesLee).  I really enjoy when I meet friends that I met online, because it's something many of us can't always do.

Now that I'm home, things Cancer wise are not so hot.  I did have my 6th Opdivo Treatment last week (on Friday) and have pretty much been sick ever since.  I feel basically very fatigued over the weekend and assumed that was still due to Jet Lag, but when Monday came and I had then been home a full week) I also started having some belly pains and that awful nausea again, on top fo relentless fatigue, which is not fun.  I've spent much of this week sleeping or in bed, because I simply am too tired to be up and do much.  I hate feeling this way and I spend almost a month feeling this crappy over the Summer and pray this is NOT happening again.  When the Cancer starts to keep in in bed, day after day, it's ruins your quality of life and that sucks.

I have not felt well enough to create in days and that made me realize early this week, that I needed to step down from being on the Design Team at The Outlawz Challenges, which was really hard.  I LOVE to create so much and for me, it's like a form of relaxing and therapy, so that when I lose that ability, it's gets me down...and I'm also feeling kind of down these past few days too.

Yesterday I had my scheduled CT Scans (Chest and Belly) and will have all those results when I meet with my Pulmonary Oncologist tomorrow.  I also spoke with my medical Oncologist and went up to Oncology while I was at the hospital to tell them about my symptoms, something they want to monitor very closely while on the Opdivo.  Luckily, my BP was fine, I was not dehydrated and I can eat some (and easily take fluids), but I dont' have huge appetite and just don't feel well.   They will decide IF I can have a treatment next week, when I go back for my labs on Tuesday.

Today, is the first day that I think, (and hope) that I'm starting to feel a bit better.  I don't feel quite as fatigued and my belly feels better, but I'm still really exhausted, so I'll take it easy, but did manage some house chores that I felt were too behind.  I hate when my house is not nice and clean and do not like to ask Hubby to do extra...he works enough already at over 60 hours a week, so asking him to take on more is hard.  If it gets too bad, I'll hire a friend to clean soon and will definitely need extra with "Spring" cleaning this year!

SO that's about it for me....nothing too bad and nothing all that wonderful.  I do HOPE my CT results are okay and that the tumor is smaller for the same.  My Oncologist did tell me not to be upset IF is the same, as that is a good results on this med -- and what we do not want it for it to be larger or see cancer anywhere else...?  Hoping that is the case!! 

Looking forward to Siring and we have had some mild days, which is great.  I am VERY happy I was in San Diego, curing the coldest part of winter and that since I've been home, it's been easy to deal with.  Today is one of the coldest days, but the sun in bright and that always makes it seem better!

Hugs to you all...hoping everyone is okay and hoping for Happy and Healthy Days for all!