Thursday, December 26, 2013 - Routine Update

Hello everyone...

Sorry for the long delay in updating my blog...I just haven't really had anything interesting to share. And to those of you who sent me emails...thank you for your concern, but this girl is doing just fine.

So, lets see...since reducing my chemo dosage (which my body is oh so appreciative of) I haven't really had any shortness of breath and the insane level of fatigue I was feeling. Now I am just mildly fatigued, gag a lot and barf on occasion...no kidding...oh boy. Plus occasional nausea and coughing...grin. I assume because of the reduced dosage my hair, eyebrows and eyelashes are returning. I no longer resemble Uncle Fester...I look more like a chubby albino as my hair (scarce but noticeable) is white. Pure as the driven snow white. Honky white. I am 10 days into cycle number five. Then I'll get a two week chemo vacation before starting cycle six. At the end of cycle six I will have a CAT scan. Keep your fingers crossed boys and girls that I am clean!

I have labs only on Monday (December 30th) as my white blood cell counts are still in the crapper. I just squeaked by this time to resume treatment. Then labs and a check up with Dr. McC. on January 20th.

Unrelated news flash...on Christmas Eve I doggy sat my friend Michelle's little Pomeranian, Bebe. Michelle dropped her off at around 6:45am. Michelle popped up the front stairs dog carrier in hand, dropped her off and popped back down the stairs. About 30 minutes later I decided to take Bebe on a potty break before laying back down. Visualize this if you will....I'm in my nighty and robe, barefoot, Bebe's leash in my right hand. I head down the stairs...one, two...at which point my feet fly out front underneath me and I do a one and a half pike down the front stairs. On my back I promptly sit up and say "f**k that hurt." I look at my neighbors house directly across the street hoping that they didn't see me as I'm sure they would have been on their front porch holding up signs giving me a 9.5 for my dismount. Results...right elbow us ugly, big bruise and I have a strawberry the size of a fifty cent piece. Left foot...the one that I shoved into the solid wood railing on the way down with my delicate frame....hmmmmm.....think Fred Flintstone, black and blue, minor chunks missing on a couple of toes...little toe is broken for sure and the piggy next to it is in question. Back hurts, right should hurts, right thigh hurts, pride...gone (not really). Here comes the best part. When my friend Michelle called round 9:00am to check in I explained what  happened. She replied "holy crap, are you OK"? Followed with....your stairs were kind of icy this morning. Really?

Monday, November 4, 2013 - Routine Labs

Well crap...today I had my routine bi-weekly lab work only to find my Neutrophil levels are not where they need to be in order for me to start cycle four tomorrow. Mine is 700 and apparently we need a count of 1,000 or more. So...this girl has another week off waiting for my body to heal itself.

Here is what's going on...

A low neutrophil count means the major constituent of your white blood cells (immune system, or infection fighting system) is low. When your neutrophil count is extremely low, it can result in increased risk of infections, which can be serious. When your neutrophil counts are normal, your body easily protects you from simple bacteria that live in your mouth and intestine - however, if these counts get too low, even normally harmless bacteria can cause serious infections.

Blood count again next Monday...we'll go from there.

Monday, October 28, 2013 - Where do we go from here?

Follow up labs and an appointment with my Oncologist today. Sharon rides shotgun to be my second set of ears. Here's where we are. The results of my CAT scan are mixed, but, much better than I originally expected. The largest nodule, 4 centimeters is no longer visible (bye-bye) two other nodules are also gone (adios), two additional nodules have decreased in size and two nodules have slightly increased in size. Of course we would have loved to have received all positive results, but I'll gladly take today's results. Also, there are no new nodules and my abdomen remains clear.

Today's red cell count was 29, they like you to be at a minimum of 30. Prior to my transfusion my red blood cell count was 21. Usually transfusion takes place when you hit a count of 28.

Where do we go from here. For now, I will continue on with the Etoposide but at a reduced dose. Currently I am taking 150ml a day, now I will be taking 100ml. I have another blood draw next Monday which will dictate if I continue treatment the following Tuesday. I need to continue to remind myself that this is a six cycle treatment program and I am only at the half way mark. If I can tolerate the Etoposide for three more cycles I will have a CAT scan at the end (early February) so we can see what my body has done. If need be there are other options on the horizon...options are good.

Sunday, October 27, 2013 - Weekend Update

Friday, October 26th - Mike (bro) takes me to the outpatient lab at Providence hospital to be type/matched for Saturdays transfusion. The waiting room is packed and my butt is dragging. I asked the woman standing in the doorway...are you waiting? She replies...no, but you will be. Alright then.

Saturday, October 27th - Mike and I leave my place...off for my transfusion and Mike starts in about the monkey blood I will be receiving today...grin. We arrive back at Providence just before 9:00am and Tammy, my nurse for the day tells me I will be in room #9 and to get comfy because I'm going to be there for approximately six hours...I truly am receiving three quarts.

First blood pressure reading of the day 100/40...Whoa. After one and a half quarts it was time for a potty break...ah, how nice to stand up and not feel like I was going to buckle...walk down the hall and back and not be gasping for breath. Finally at just after 4:00pm I was done. My engine serviced with a complete flush...of monkey blood. On a serious note...I send a big thank you out to all those who donated their blood to help me.

Saturday afternoon...Cindy quasi watches a world series game and takes a two hour nap.

Saturday night...Cindy sleeps 14 hours.

Sunday...Cindy feels like a new girl. Still off my game, but so, so much better.

Friday, October 25, 2013 - What a Difference a Week Makes

I must say this past week has been one of my most difficult weeks since starting treatment in 2011. So light headed when I stand, shortness of breath with any movement...taking a shower is like running a marathon...even brushing my teeth tires me out, muscle aches, and the fatigued, holy Mary. I put a call into my triage nurse yesterday since I was unable to stay in a standing position and was gasping for breath...she had me come in for an unscheduled CAT scan and blood work. They wanted to rule out blood clots in my lungs...which, I felt confident I didn't have but, they are the professionals. I waited for the results of the blood work and found out that pretty much everything is crazy low...white blood cells, red blood cells, platelets, etc...so low, I will be receiving a blood transfusion tomorrow morning. Seems the chemo is working double time and has taken my counts too low.

This morning I received a call from my triage nurse with the results of my CAT scan...it came with mixed results...but as a dear friend reminded me, mixed results are better than bad results (thank you Brian). Some of the nodules have decreased in size while some have increased. So the chemo is working, but it isn't?

I have follow up labs on Monday and then an appointment with my Oncologist to discuss what has happened and where we go from here.

I am not looking forward to the transfusion tomorrow, I understand that I'm to receive three quarts. Really? But, I am looking forward to feeling better and apparently looking better since my triage nurse asked me...have you looked in the mirror lately? Gotta love her.

Thursday, October 17, 2013 - Oh My!

Queasy, vomiting and dizziness...oh my! Yes boys and girls, that about covers my life these past few weeks. Had a fairly rough time with queasiness and vomiting for two days...I now have a better understanding how some people call time...meaning they stop treatment. Now don't worry, I am as committed today as I was when I got on this crazy merry-go-round. I called my triage nurse and we mixed up, doubled up my anti nausea meds and Cindy got some much needed relief.

Monday, September 23, 2013 - One More Week

So...here we are seven days after the end of cycle two and I am still feeling yucky (fatigued, light headed, dizzy)...which was confirmed by today's blood work. My white blood cell count is low and I'm anemic...surprise, surprise. Which means, I get another week off...and not just this cycle, but for each cycle moving forward. Seems my body remembers past treatments and one week just isn't enough time to recoup before the next cycle of treatment begins. This will push the end of treatment to January 27th...but it is what it is. I have a CAT scan scheduled for October 31st (the halfway point) and an appointment with Dr. McC. on November 4th to get the results. I know there has been a huge improvement as I am no longer coughing or having any difficulty breathing. Best case scenario...no sign of anything foreign to be found!

Sunday, September 8, 2013 - Cycle Two

Well...here I am 13 days into cycle number two. Again, a rough start...nausea, light headiness, headaches, gagging......ugh, yes...gagging and eventually...I blew. First time I have vomited from treatment. So, one can assume the Zofran (anti-nausea drug) is no longer working. As soon as I pulled myself together, or up off my knees from the bathroom floor, I put a call into the triage nurse. Once she heard what had just taken place she immediately called me in a new prescription. My sister in law was coming over that day, delivering food, her oldest child, moral support and stopped at Freddie's on the way over to get my new script. This new drug has also eliminated the headaches I was having so I actually got a two-fer. I have not suffered any nausea since and actually, I have cut back on the frequency in which I take the anti-nausea meds. Eight more days to the glory land...one or two weeks of being treatment free depending on my white blood cell count. It's the simple things in life isn't it?

Monday - August 19, 2013 - The Count Matters

So...I survived my first treatment cycle. Definitely rough around the edges, some serious nausea during the first week and all the usual crap (hair loss, sweating, being light headed, etc.) following close behind, but I made it. Then a week off, one entire, glorious, week without treatment. Day one I still felt like crap, day two was a little better, so forth and so on. Yesterday I had my first follow up with Dr. McC. and was prepared to start cycle number two today so I was a bit surprised when she said no treatment for me this week as my white blood cell count is too low. Hmmmm....hence the full hair loss, sweating, being light headed, etc. so soon out of the chute. Man...that was quick! Dr. McC. is thinking that perhaps I will need to be on a cycle of three weeks on, two weeks off. Works for me as I am feeling pretty good today. You never really recognize and appreciate how good you feel each day until you feel borderline poopy each day. I have a follow up appointment on Monday the 26th to check my counts. If things are up, we are good to go. If not, we go to plan "b" which I assume will be either drugs to increase my white blood cells or a blood infusion (icky...me no like). For now bring on the oranges, leafy green vegetables, almonds, crab, carrots, chicken, etc. All the natural things that help increase/maintain your white blood cell count.

Sunday, August 11, 2013 - Three Weeks into Treatment

Well...it hasn't been horrible, and it hasn't been...without its challenges. The nausea started immediately but was quickly (OK...so four and a half days isn't quickly...especially when you are on the inside) resolved. All of the usual suspects are present...low grade headache, thrush, upset stomach, output issues (TMI?), fatigue and of course...hair loss. Yep, already...and lots. I sent my friend/hairdresser a text this afternoon asking her when she could come. She knew what I meant...she'll be here tonight at 6:00pm to give me a number five comb. Guess I can scratch hair paste and hair spray off my shopping list.

Reinforcements are already in place...my sister comes on Mondays and Wednesdays, and my niece on Fridays, Saturdays and Sundays. We switched beehive day (Mom's standing hair appointment on Fridays) to Wednesdays so that she could be confident that her hair would be getting done each week....just as it has for the past 50+ years. My Dad once said...Honey, just once before I go, I'd like to see you wear your hair natural...not back combed and sprayed. Mom gave Dad everything he could ever want in their 41 years together...except that...grin.

Did I mention that I take my last dose of Etoposide tomorrow (Monday)...then I get a week off and hopefully some relief. One cycle down, five to go.

Sunday, July 28, 2013 - Bad Ship Nausea

How bizarre, or not, that I just posted something this morning on Facebook about being surrounded by people who will help you get untangled from the things that are binding you. My nausea has been binding me...four and a half days of feeling seasick...sweet Bajeezus, let me off the boat. Last night I spoke with my sister, brother, and sister in law on the phone. I think they all heard it in my voice...how desperately I wanted off the bad ship nausea.

This morning my sister shows up. Without asking the dishes done, floors mopped, bathroom scrubbed, laundry done, lunch made and served, back and side yard manicured. I'll be back tomorrow, put together a grocery list and I'll do your shopping, then I'll manicure the front and whatever else needs to be done. Meanwhile, I take an old anti-nausea pill and viola! The clouds parted and I was feeling wonderful...OK, maybe not wonderful, but Holy Mary...whew! Just as my sister was getting ready to leave my brother shows up with his tool chest and hot, scratch made food that my sister in law spent the morning preparing...Turkey meatloaf, mashed potatoes, lasagna, peanut butter treats, and roasted chicken breasts that my brother made this morning on his Traeger...all low fat and heart healthy. Next, my brother tackles our to-do list...each and every item complete! 

How lucky can one girl be...honestly, I don't know what I'd do without them.

Monday, July 22, 2013 - Eenie Meenie Miney Mo

And my decision is.....mo. I chose Etoposide. I chose it because it is not a platin based drug. My hope is that it will put me into remission, and KEEP me in remission. I had two questions for Dr. McC. First, I was concerned about the rare side effect of developing a secondary cancer, specifically Leukemia. She told me that virtually all chemo therapies run the risk of developing a secondary cancer because they alter our platelets...but with Etoposide, the risk is slightly greater. She followed that with if a secondary cancer did occurred...it would be years down the road so they are more concerned about use with younger patients. Damn, I think my doc just dissed me...grin. My second concern was cost. Since it is a oral chemotherapy, is it billed as a treatment, or billed as a prescription? If its billed as a prescription what tier does it fall in, and what is the co-pay? I left the office with my script in hand, came home and called my pharmacy. The only way the pharmacy could give me a price is to run the actual prescription...and of course they need the actual script to do that. You know what, I should start a business where my teams role is to help individuals navigate though the medical process....good grief! Being a resourceful girl I just said to myself...screw it, and I called my insurance company direct. Have I ever mentioned how wonderful Regence OMIP is? I have contacted them on a number of occasions and have received nothing less than stellar service each and every time. So back to the cost of this prescription...a mere $4,300.00 per month. Yes boys and girls you read that right...$4,300.00 per month. My co-pay..........$5.00...SWEET! I told the representative I was speaking with...please don't think this rude...but are you absolutely sure, because I need a sure thing. Sure enough $5.00. Let therapy begin.

Monday, July 15, 2013 - Follow Up Appointment

Today was my follow up with my Oncologist...Doctor M to the C as I refer to her. It's been four weeks since we last spoke...I have been waiting patiently, and non-patiently for the study to start. Unfortunately, I received the news today that the study has been pushed back yet again. Now it's scheduled to start on September 5, 2013, but again, there is no guarantee that the study would actually start on that date. For me, this is out of my comfort zone so today we discussed other options...which are plentiful. Here are the top four.

1. Doxil - Doxil apparently is well tolerated, has minimal side effects, no hair loss and can be taken long term (like in excess of a year). In talking with Doctor McC., she suggested that perhaps we leave the Doxil in our treasure chest should I possibly need it at a later date. Her thought process behind this is because overall I am feeling well and strong, so it might be best to save it for a time when perhaps I am not feeling so chipper as they say.

2. Carboplatin - The mother load...however, it appears that I am platin sensitive. Meaning, that my treatment with platin based drugs has been successful in reducing and/or eliminating the tumors, but it doesn't keep me in remission long term. Carboplatin comes with the whole meal deal of side effects. Been there, done that.

3. Carboplatin and Taxol - The Devil...even my Oncologist referred to this combo as the devil. Also been there, done that. Again...it appears that I am platin sensitive, but this is an option. It kicks it ass, but it hasn't proven to keep me in remission.

4. Etoposide - Etoposide is an oral chemo therapy that you take once daily for three weeks, then you get a week off. This continues for six cycles. Again, the usual side effects, possible nausea, vomiting, diarrhea, light headiness, fatigue, hair loss....let me correct that, full body hair loss...head, eyelashes, eyebrows, arms, legs...yes, and that too. This seems to be what I am leaning towards but I want a few days to do some research and follow up with doctor McC. with whatever questions or concerns I might have. Etoposide is not a plain based drug.

Follow up appointment...Monday, July 22, 2013.

Friday, June 28, 2013 - Update

Hello my friends...

I spoke with Jenni earlier in the week (Jenni is the RN in charge of the Sea Squirt study at Compass Oncology). As it stands it looks as though the study will begin in late July as originally thought however, she also told me that the pharmaceutical company than manufactures SeaSquirt has pulled back a bit due to logistics so there is no guarantee. Initially this concerned me greatly until my friend Sharon and I talked it out...if I was just getting treatment and not participating in the study I would be receiving treatment once monthly. This means that if the study starts in late July, I would miss one treatment...maybe two. I will check in with Jenni again in two weeks to see where we are and decide if I want to wait, or move forward.

My friend Carol S. reminded me today...it's a marathon, not a sprint. Smiling...good advice my friend.

Other than some coughing...which I am still uncertain if it is asthma related, cancer related, or both...and being a smidgen tired...I feel great.

This is an actual Sea Squirt!

Monday, June 10th - Decisions, Decisions, Decisions

I have decided to join a study that will be starting in July. There will be 

two groups. Group A will receive Doxil, group B will receive Doxil and Sea 

Squirt. Group A receives treatment every four weeks, group B receives treatment 

every three weeks. Group B receives treatment every three weeks because you 

receive a smaller dosage of Doxil. Treatment will last approximately 90 minutes. 

Dr. McCormick will still be at the head of my medical team. Today I met Jenni 

and Samantha, two RN's who will be heading up the study at Compass Oncology. The 

Sea Squirt folks have done multiple small studies, but this will be the first 

big (nation wide) study. All costs outside of my standard treatment is paid for 

by a grant supporting the study. Jenni also thinks it will cover the cost of 

the Doxil. I will have a CAT scan every three months and be on chemo 

indefinitely. Not because I am participating in the study, but because of my 

reoccurrences. The study requires that I have a BRCA test which determines if 

your cancer is genetic. This was offered to me when I was first diagnosed with 

cancer, I opted not to have it done because of the cost involved (this is not 

covered by insurance). I am thrilled about this because the cost is about three

thousand dollars and it's covered by the study. This won't have an impact of my

life, but it certainly could for Mom, Sandy, Becky, Toni and Sara.

Next appointment, Monday, July 15th.

I might be stronger than cancer but I am not stronger than this blog. I have tried five time to correct the formatting...as you can see I failed each time. Oh well...choose your battles!

Monday, June 3, 2013 - Third Times a Charm

Well, here we are again. Last week I had a routine CAT scan and today I got the results. Unfortunately, I didn't get good results. The cancer (I refuse to say my cancer) has reoccurred. It's in my lungs again and thankfully nowhere else. The nodules that were gone, or insignificant in size in February 2013, have doubled or more in size plus I have one new one...oh boy. All in all I think there are six. Rotten little bast@&$s. Dr. McC's objective is to provide me with quality of life so one of the options she talked about was not taking any action at this time because I'm not having any symptoms. However, I think that possibly some of the things that my Pulmonologist linked to my asthma in February...dry cough, off and on sore throat, might actually be cancer related so between that and the quick growth I am not comfortable with that. We discussed two other options. A). I start a once monthly treatment of chemo administered by IV with a drug called Doxil. Apparently it is well tolerated and can be administered long term (for like a year). One of the side effects can be an itchy, burning rash on the palms of your hands and the bottom of your feet. Sometimes blisters will actually appear at which time they would stop treatment. B). We also talked about a possible study that is being conducted where they use Doxil and Sea Squirt (which is now synthetically made but was originally a secretion derived from sea animals). It has been successful in patients with a certain type of melanoma and they believe it could show promise for patients with reoccurring ovarian cancer. Dr McC. doesn't know if the timing is right for the study or if she could even get me in but it is an option we are looking at. I go back on Monday, June 10th after I have had some time to think and we will plan our attack.