The next steps for me...

Posted from Facebook....

   Tuesday afternoon---I guess you might say that I'm very lucky in that respect. It's an Immunotherapy like med and is given via IV, much like Chemo. Apparently the Chemo did NOT work for me and is why my tumor is back and growing faster! Pretty much this is the ONLY hope I have right now ...so PLEASE pray that it will work and the Radiation will help shrink the tumor too! It is pretty upsetting to realize just how deadly this illness can be, especially when the tumors do NOT respond to the Chemo. This drug has been FDA Approved for advanced Melanoma since March and there is a lot of data that shows it can work well. However, with it being such new drug, despite the positive clinical trials, there is just NOT a lot of data or research available. My oncologist, feels it (based on the trails and her research) that it can work well and she has been involved in many of the studies. She was thrilled when it did receive the FDA approval last month. Had it not been approved, I likely would not have been fortunate enough to have the chance to try it..so I am happy about that! Even so, this is a lot to absorb and has made me know realize that my cancer is far more advanced than I knew (or wanted to accept) UGH!

   Update:  I started my Radiation, Tuesday afternoon, that the set up done, the "tattoos" and so forth, the first treatment is on Sacredness and I'll have TEN in a row before we leave for SD.  I'm being "Radiated"at a higher dose, so that I'll get faster results with less treatments.  

   HOPING....and taking one day and on moment at a time...

Lots to do today!!

  By the end of the day, I'll know what my new treatment plan is and exactly when I start and what my long term prognosis is.

   I have an appointment with my local Oncologist at 9;40 am to once again review my CT scans for for her to tell me with the team has decided is the best plan of treatment.  Then later this afteroon, Hubby thankfully will be home and will take my to my first appointment up at the hospital where I will have my Radiation.  I believe today, will be the set-up to get me ready and to determine the sites and such of where there will pinpoint the beam.  From what I have learned, I will have little marks (tattoos) put on me, which is aid in the how they set up the machine each day.   I have wanted to get a nice little "pretty" tattoo for months, but this was NOT what I had in mind!  LOL!

   For now I'm doing my very best to take one moment at a time and do HOPE that once I begin the treatments I will start to eel better.  The nausea is awful and I now it's not from my Chemo, but likely the Cancer and/or from the major change I have had in vision.  My new "Trial" contact lenses are in and I'll be picking those up this morning and HOPE it's the help I need.   This is a huge change from when my vision was checked and I ordered new contacts just five weeks ago.  The good news is that we know it's not from a brain tumor, as that CT Scan was fine - Thank Goodness and I've been told that Chemo or just having cancer can change your vision and that this is NOT uncommon.  I'm also being referred to an eye Doc affiliated with Mass Eye and Ear, but need to know all my Radiation appointment times, so I can call and schedule that visit.  Luckily, this doctor is only a five minute drive from where I will have my Radiation, so I hope to get in ASAP and should be able to call and set it up tomorrow.

    Yesterday, I was so touched by a wonderful "Kindness" package that Jennifer McGuire sent to me.  If you do not know here, she is a top designer in the craft industry and has become a dear friend to me.  I was so happy to see her when I attended the Simon Says Stamp Create event in October and am touched by her wonderful new Kindness campaign, which you can read about on her blog HERE

!

   This week is all about sharing Handmade Kindness with your Community, so today I'm bringing a big bag of "treats" up to the Oncology Unit and I also made them a new card to show my appreciate for how much all those gals and Dr. Sunkara mean to me.  They are some of the most caring people I have ever met and I do feel very blessed that this unit is in my home town.  Now, if ONLY they could do Radiation local..that would be heavenly!  But. I will have to make the 25 minute drive and grin and bear it every day!  Something I am NOT at all looking froward too!

   Hope you all have a wonderful week and HOPE you'll all consider joining in on Jennifer's Kindness Campaign, which was designed to benefit the Kind Campaign..an amazing non profit group put together to help share more awareness on "Bullying".  This group ROCKS...and I was happy to donate to them last week..maybe you can too!!

   Update:  One appointment done and one to go! I will be starting Radiation immediately and mine will be given a higher dose (so that I can get in 10 treatments) before we leave for Cali. As soon as I get back, I will then start on a brand new FDA Approved drug for late stage small cell lung cancer, that is called Nivolumab. It is a drug that I had learned about (when it was in clinical trials) from the Dana Farber Cancer Team (back in April). It just rec'd the FDA Approval in October, so I guess you might say that I'm very lucky in that respect. It's an Immunotherapy like med and is given via IV, much like Chemo. Apparently the Chemo did NOT work for me and is why my tumor is back and growing faster! Pretty much this is the ONLY hope I have right now ...so PLEASE pray that it will work and the Radiation will help shrink the tumor too! It is pretty upsetting to realize just how deadly this illness can be, especially when the tumors do NOT respond to the Chemo. This drug has been FDA Approved for advanced Melanoma since March and there is a lot of data that shows it can work well. However, with it being such new drug, despite the positive clinical trials, there is just NOT a lot of data or research available. My oncologist, feels it (based on the trails and her research) that it can work well and she has been involved in many of the studies. She was thrilled when it did receive the FDA approval last month. Had it not been approved, I likely would not have been fortunate enough to have the chance to try it..so I am happy about that! Even so, this is a lot to absorb and has made me know realize that my cancer is far more advanced than I knew (or wanted to accept) UGH!

Bad News...

 My cancer is back!!!  And as much as I was concerned it would be, it still was so upsetting to her that news today!   The tumor is my lung is larger and grew fast, despite the chemo that I never stopped.  I start Radiation asap, my docs will consult tomorrow and let me know..it will likely be next week.

 I am still going to Cali for Thanksgiving an would NEVER ever give up that trip...I asked if I could start after, but they say I need to go ASAP to save my life.   I'm so depressed and scared but I'll do what they want for now..but will not give up my live to be in a treatment or the hospital every day..if if comes to that...I want some quality of life and to do things on my "bucket list" while I can.

  Please keep me in your thoughts...I'm feel very defeated right now ..and pray for all those that deal with this nasty illness!

Thanks for ALL the love and support!

Scared???

Okay, no NOW I am Scared!!!

    I saw my Oncologist this morning for my typical "pre chemo" appointment, at which time I expressed my concern over being so sick all the time!  I told her her that I have been nauseous a LOT more lately and that I rarely have any good days!  I am SO thankful for those I do have and luckily I felt good when I went out to CREATE.   I was pretty sick on my flight home, but it was a short one and I came home and went to bed! In the past few weeks, I've had some more vision changes in my left eye (I saw my eye doc a few weeks ago and my contact RX changed, but I'm still have issues with one eye).   NOTE: I did NOT have this happen when I had my brain tumor and I do NOT have any of the Symptoms I had then! (Thank Goodness) ----------- 

    I told her I was a bit concerned about my upcoming CT scan and she told me, that she thinks it would be wise to add a Brain CT Scan too, and that would be booked with my others on the 16th!! She did tell me to try NOT worry, that based on my "last" blood work, all looked good and that there would typically be some changes that would trigger her to be concerned! She does feel that I may likely have Gastritis due to the meds and that I must try to eat breakfast first from now one and to increase my Prilosec dose.  I've never been good about breakfast..don't care for food in the early AM and by the time I do feel like eating, it's often closer to lunch..but I promised to try harder and she is also have the Nutritionist come up and meet with me at my Chemo appointment tomorrow! I will try, but UGH..putting food in my stomach, in the morning makes me feel yuk...and when I already feed YUK, it's even harder! But, I promise to try harder and take my meds later........ 

    NOW -- (later in the afternoon), I received a phone call from Oncology and they have pushed up ALL the CT Scans for tomorrow, even BEFORE my Chemo.  I now have to been there at 8:15 and typically my Mom drives me, since I need to take Meds to deal with the CT Scans...!  She is not home and is away (BTW she does not know this, so if you do happen to talk to her before me...PLEASE do not share this, for now)....But, they said, just to take my Ativan right before I leave and take the second i have my "drink" in Radiology, which is brutal...tastes absolutely horrible. I then have a new Brain CT Scan and a Lung/Abdomen Scan"...after that I'll to up to the floor and have my Chemo and by the time that's done, the Ativan will be worn off, so I'll be safe to drive home! As I have been finally "confessing" to friends and family...I am MORE worried than ever and PRAY to God that this cancer has not spread into my Stomach or GI area and is the reason, I'm sick all the time! PLEASE if you have a minute, think of me and think GOOD thoughts, for those of you who believe in Prayer (I sure do), I ask for extra prayers.  

    I have already been devastated by this illness and LOVED the three months that I had in Remission....! HOPING these new CT scan come back just a well promising as those did!  Love you and LOVE that you ALL have been such wonderful supporters! No matter what, I'm still going to San Diego for Thanksgiving and would NEVER change that now.  My next chemo is scheduled  for the first week in December and that's how it shall stay!   I'm SCARED...and not afraid to admit it!

   Thanks for listening and thanks for Caring!

Great News...

  I saw my wonderful oncologist today, (Dr. Sunkara), who I just adore and was very happy to learn that I'm doing well and my blood-work continues to improve.  I was there today for a Pre-Chemo appointment and will be having my Chemo tomorrow morning.

   Since we will be going out to San Diego for Thanksgiving, I was delighted to find out the I am doing so well, that I can now "skip" a chemo appointment or simply have it a week or so later.  I am also super excited because she also told me I can plan to go out there for a month or more, which is something I may do, IF we start to have another awful winter, new in New England.  After last year, and also still dealing with Fibromyalgia and Disc Disease, I truly HATE winter and each year seems to get harder and harder!  I have more pain, feel awful and can never seem to feel warm.   We've heard some "long range" forecast that say we are in for another Winter, just like that....UGH!

  So...now with a "Free" Round Trip ticket I have coming from Jet Blue Miles, I know I can plan to go out...and then simply stay for an few weeks or even a month.  Dr. Sunkara told me, she could also arrange for me to have Chemo out there, IF I needed or wanted to stay longer.  Yippee!

  Now, I am HOPING to search for a Rental for a month, in the San Diego "Downtown" area.  Ideally, if I can find a nice furnished 1-2 Bedroom, that's my goal.  I have excellent references and do own my own home, so IF you know any real estate agents of ANY rentals in January or February, Please Share.  Hoping I'll find a place with an extra bedroom or "sleeper" couch, so I can invite friends to come out and stay with me for a week or so.  That way Hubby and even Alex and Acacia.

   I'm so excited and will look up some "people" and places when we go out next month. I am thrilled that Alex and Acacia are coming with us and that I'll be having "Thanksgiving" with both my boys for the first time in a LONG time!

   I'm feeling much better now and back to created and have gone back to designing for the a2z Scrapbooking Store, which I Love.  I went to a one-day card-making retreat - ArtLoftRetreat down in RI, his past Sunday and I'm also off to the Simon Say Stamp "CREATE 2015" big event for 4 days, starting October 22nd.  One of my dear craft friends, from Virginia (Pat Crank) is coming too and we'll be sharing a room at the Hotel when all the classes and events are hosted.  I also have some old friends that live up in Montville (near Cleveland) and they too are coming down to the Hotel that Weekend, so we can get together, have dinner and hang out a bit.  I have not seen "Frank and Karen" in over 25 years..so this is a huge treat.  We have even lost touch for several years and I was lucky to find Karen on Facebook about three years ago.  We've been trying to plan some sort of get-together and has talked about driving to Upstate NY (the halfway point for us both) and meeting for a weekend..but 'driving is still way too exhausting for me.  I'd much rather fly anywhere and be there fast.   I can't wait to seem them and Pat, not to mention be part of this amazing event.

   That's my update and as you can tell I'm still in "Remission" and doing well.  Still have to have the one type of "Chemo" and talk lots of meds, so I'm not 100% yet and don't exactly feel like my "ole" self, but I hope in time that will come back!!

    Overall.....I feel like I've been Blessed with a Miracle to be doing this well in six month.  I still have what is consider "Incurable" but treatable Cancer, which I why I'm doing the Chemo and CT Scans every 90 days.  I have that coming up next and pray it is as good as the last time!  WOOHOO! Thanks again for all the prayers, cards, phone calls, emails and your wonderful SUPPORT!!