Final Chemo - Not Really

This journey has created so many ups and downs, optimism and pessimism in my daily routine.  But, the one thing I've learned is no matter what they tell me, the opposite will probably happen.

I arrived at my "official last chemotherapy treatment" and had a lengthy discussion with my Oncologist and his Associate.  Here is the highlights of the conversation:

• If you remember, 2 weeks ago my White Blood Count was 3.9, which is the lowest it can be within normal range.  My chemotherapy drugs, Carboplatin and Alimta, both destroy these cells so it was questionable if I would stay at that range.  We thought it would go lower and I would have to postpone.  Quite the opposite happened.  My White Blood Count today was 5.5 - so now we have to been on the lookout for what may be causing that.  Chemotherapy has destroyed my immune system so the first thought is I am fighting something off, but I really feel okay in that respect.
• My true chemotherapy includes the 2 different drugs listed.  Any change in that is considered "maintenance therapy."A Tumor Board of Oncologists will be reviewing my case on Sept. 23, 2014 - they will decide one of two strategies - 
• Option 1:  I will have CT Scan, MRI of Brain, and PET Scan of my whole body in approximately one month - after which time, depending on what they find, I will either continue with the "2 drug Chemotherapy" or begin maintenance
• Option 2:  I will begin "maintenance therapy" which would be only the Alimta and that would continue every three weeks.  However, I won't start this for 6 weeks (end of October) to give my body time to recover from the Carboplatin which will be discontinued. If this option is what they choose, my scans won't be done until end of 2014 or beginning of 2015.

The reason I have to have maintenance therapy is even though there were no tumors found in several lymph nodes, there were free-floating microscopic cancer cells found in all.  Also, the main tumor was less than 2mm away from my pulmonary artery which also had free-floating cells.

Dr. Chang told me that given those facts, I could either be in maintenance therapy or clinical trial therapy for the rest of my life.  I asked him, "how long is that?"  His immediate reply, without hesitation was, "I have no idea and even if I did I don't think I would tell you at this point."    So now we await the decision of the Tumor Board on Sept. 23 - either way, at least I have at least a 6 week break in between treatments.

My optimism in this journey took his reply as "well if he doesn't know then it's not soon."  My pessimism tells me, "well that's not good."  Either way, I am still in this for the long haul.  I know my life changed dramatically in February and have adapted to that.

September 1st was also the date of my offical first Social Security Disability payment so I am now also official "disabled."  I think that word is the hardest of all to handle.  I accept I am sick, I accept I have cancer, but I don't think of myself as disabled.  A new world to get used to.  Especially since the doctor gave me the forms for the Handicapped Placard from BMV - isn't that only for old, grandma people....oops, I forgot, I am a grandma

It's Hockey Time Again

And this grandma...NO, this Nanna, gets to start Hockey this weekend with her favorite boy in the world - now, that's not disabled :)  That's not someone who is ready to throw in the towel just yet - we have a long road and a long fight ahead of us.

#fightlikeagirl#

Enough Said !!!

Cycle 3 Update

Last Friday I completed Cycle 3 of my 4.  Today was an appointment at the University Hospitals Seidman Cancer Clinic to discuss my future.  I had my blood work done today as well (which I have done every Friday).

I learned quite a bit at today's appointment.  Honestly, I think some of it, I had been told before but it didn't sink in and much of it was new.  So here is the info.....

• I will have a total of 4 cycles of chemotherapy.  September 12th will, technically, be my last round.  From my surgical pathology, it was determined the exact gene that my cancer is. Based on this, research and clinical trials, determine what happens next.  Research has shown that 4 cycles is enough IF the cancer hasn't spread.  The gene that they test for, a mutant gene, is NOT in my cancer.  That means that maintenance chemotherapy is really not productive until my cancer has gone somewhere else in my body.  
• Approximately one month after my last chemotherapy, I will go for a CAT Scan and PET Scan to see if (and where) the cancer has gone.  I will also have extensive blood work to look for markers that may determine if there are cancer cells within my body that the scans can't pick up.

So, basically, a final determination of what my future treatment is until October.  The doctor explained the effects of Chemotherapy are not worth continuing with my type of cancer(s) unless it shows it is progressing.  Therefore, I will have to have scans approximately every three months even if I appear to be cancer free.

The doctor was quite honest with me - he told me, while the surgeon did remove all my tumors, the reality is that it went into my lymph nodes and that means it is within my body somewhere.  It is not a question of if it re-appears but when.  

Since February, I can't think of a time when I felt well...or like myself.  First the infections and antibiotics, then the surgery and recuperation from that, then the chemotherapy and all its side-effects.  

While I'm dreading October for fear of bad news, I am also looking forward to it thinking the chemotherapy side effects will be gone and maybe for the first time in 9 months, I'll feel like my old self.  Reading this post, I think I sound a bit negative but I am truly looking forward to a time when treatments and side-effects are not a part of my daily routine.

One last thing that was decided today is that I no longer have to have weekly bloodwork.  Since my levels have been within normal ranges for the first 3 cycles, I can stop and only have it done once a month - YAY!!