Tuesday, September 16, 2014

Middle Of The Night Ponderings

3:30 a.m. and I'm awake - FINALLY!!  Chemo really knocked me on my butt this time. Friday and Saturday, I felt great (well, not great, but you know) but since Sunday, I have basically just slept non-stop.  Constant naps.  Up for about an hour then another 3 hour nap.  

It feels GREAT!! Finally, I slept. Now my mind is racing and I'm wide awake...... Upset stomach is going away, grogginess is gone, exhaustion is gone.  Dont' get me wrong,I could lay back down and sleep another 4 hours but it feels so good right now, I want to go take a walk or something.

Being awake in the middle of the night has its drawbacks too.  You think of the oddest things:

  • What is Cameron dreaming about?
  • What will my future hold?
  • Driving to see Caitlyn tonight
  • So excited to spend Christmas with all 7 of my children for the first time in over 5 years
  • Grateful for everything - and I mean everything - the amount of help and support I receive is overwhelming
  • Why do people sweat the small stuff?
  • When will it snow?
  • A dependable car - finally!
  • Health of my children and grandchild
  • The love of my children and grandchild
  • My daily phone calls from my children
LOL, the last one, daily phone calls - times 7 - at times can be challenging but I love it - especially when some call me 3 or 4 times a day - It's great to feel loved.

Yeah, I'm losing it - I think of the oddest things in the middle of the night!

Saturday, September 13, 2014

Second Opinions Are Vital To Your Decision Making

When I was first given my cancer diagnosis, my physicians and health care workers were a wealth of information of resourses available to me in the North East Ohio area. From other professionals to organizations that would help with whatever I needed. But the most important thing to remember whether you have been diagnosed with cancer, or you’re dealing with another serious medical diagnosis, you may want to consider the benefits of seeking a second opinion. Though it may be awkward telling your original doctor that you won’t be returning, he/she should understand that finding another opinion is a common practice. And if your doctor does not understand, then maybe it’s not someone you want to visit again anyway. While it may take some effort to seek out a second opinion, it could be worth those extra steps. If nothing else, at least you’ll feel comfortable and confident that you are heading down the right treatment path.
Here are six reasons why you might want to consider a second opinion for your cancer diagnosis:
1. Feel empowered and take control – By proactively seeking a second opinion, you and your loved ones become more informed about all of the available treatment options. Learning about your cancer and treatment options can also help you feel more in control of your health.
2. Confidence and peace of mind – A second opinion can help you feel more confident that you are choosing the right treatment plan. A misdiagnosis is always a possibility, and a second opinion can help determine whether your diagnosis is correct. If the results are the same, your second opinion may provide you with more treatment options that you hadn’t considered before.
3. Discover advanced treatment options – Some hospitals have technology that is not available at another facility. Seeking a second opinion from a doctor in another health system could provide more cancer treatment options, including treatments that are more advanced or more tailored to your individual needs.
For example, CyberKnife® VSI™ Robotic Radiosurgery is an innovative treatment that delivers high doses of radiation with pinpoint accuracy to a broad range of tumors throughout the body. Benefits may include no incision, no pain, no anesthesia or hospitalization, greater comfort and faster return to normal activities.
4. Find a doctor you really like – Working with a doctor you really like and trust could make a huge difference in your healing process. It can help you feel more relaxed, which could lead to a better outcome. And, you will be more likely to express how you are honestly feeling, so that your doctor can help alleviate any pain or address issues immediately. As you look for a new doctor, take note of the nurses and office staff, to make sure you choose to treat with the best team and/or hospital for your needs.
5. You have a rare cancer – A rare cancer could mean a greater chance of misdiagnosis, since it may be a disease that the pathologist has rarely encountered. If you’ve been diagnosed with a rare cancer, a second opinion may be beneficial to confirm the disease type and stage.
6. You have been told there is no hope – In every situation, there is always hope. One doctor may say that your cancer is untreatable, while another will explore treatment options that had not been presented before. Whether the goal is to simply alleviate pain or if it is to prolong life, the decision is up to you. If your doctor does not listen to how you want to proceed, then you have nothing to lose and everything to gain by getting a second opinion.

Still Not Much Sleep

How is it that I used to be able to sleep for 10 hours or be able to able to fall asleep in 5 minutes?  I totally forgot what that feels like.  It is so hard to describe, but the fatigue has me so tired but the minute I lay down, my eyes pop open and my feet start jittering.

Last night I took my Ambien CR and didn't fall asleep for about an hour and a half.  Then I woke up 4 hours later and was up for 2 hours.  So again, I really can't complain, at least I'm sleeping for 4 hours at a time :)

Today was Ice Skating with Cameron for the first time this season.  Oh my, that was interesting.  He was able to use a cone to help steady him because there were less than 6 people on the ice.  Pootie skated with him so Uncle Pootie, being the nice Uncle that he is, paid - 2 skaters, 2 skate rentals - $19.00 - yep, you read that right.

Then after 25 minutes Cameron decided he didn't like hockey skates and wanted to change into Ice Skates - to which Nanna said No.  So he decided he was done.  He blamed Uncle Pootie and was mad at him for not giving him Ice Skates and said, "next week I'm only skating with Nanna!" HAHAHA - Nanna can't even stand up on skates.  

Pre-Skating Snack For Energy
As you can tell, his pre-skating snack really didn't help - after 25 minutes he was done, hair soaking wet :)

Friday, September 12, 2014

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.

Enough Said !!!

Thursday, September 11, 2014

Good To Go Tomorrow

Well, Medical Mutual Of Ohio has my praises!!  Apparently, through their Quality Assurance Program where they record phone calls, my two hour call yesterday was recorded.

This morning I received a call from Compliance to assure me that my approval "fell through a crack" and will be expedited to come through today.  The woman was wonderful - constantly apologizing for yesterdays confusion.  She even asked me to conference in the Doctor's office and told them, "even if you do not receive official written approval today, go ahead with Mrs. Toth's treatment tomorrow as we will do what we need to do on our end."

So tomorrow morning, off I go to Sediman Cancer Center!!

Cycle 4 May Be On Hold

Throughout my journey, I have had one constant - my insurance company.  Medical Mutual of Ohio has been superb in paying all my medical bills with no hassles.  Well, my luck has run out on that one.

Friday is my next chemotherapy appointment and yesterday the doctor's office called me. Apparently, all of a sudden, one of the chemo drugs, Alimta (Pemextred) is now on a prior authorization list.  Meaning, I can't have the treatment(s) until it is approved.  The doctors office, myself and a rep from Med Mutual spent 2 hours on the phone trying to determine why this happened now, and why 2 days before my treatment.  We never came up with an answer.  But we did start the process so hopefully sometime today this will be approved. I kept asking how can you do this mid-way?  I would understand if it was before my first treatment, but my 4th?? Oh well, whatever it is - it is.  Just so we can get it fixed today :)

Actually, the approval may not be a problem because my bloodwork may prevent the treatment this week.  My White Blood Count has slowly dropped and last week was right at the cut-off for allowing treatment - when I go tomorrow, they will draw blood to check if I am able to get the treatment - asking for prayers to make sure all goes well and I can proceed with no interruptions.

This week has been a roller coaster of side-effects, too.  Usually by week 3, I feel good but this week I have had quite a bit of an upset stomach.  I also noticed that while I am not losing anymore hair, it is not growing.  So I am lucky that I didn't go totally bald.  Buzzing my hair down to 1/4 inch hides the bare spots and in 9 weeks since having it done, my hair is still the same length.  Not complaining here since many people have it worse.... just finding it weird that it stopped growing without completely falling out.

And now to enjoy my favorite time of year - I am not a summer heat person, so the first week of cooler temps brings me joy.  Starting today, NE Ohio will be in the 60's for a week - I'm loving it.  Nothing better than a cool, clear fall day with a cup of coffee while completing my needlework - that my relaxation!