BORRRING!

Not much to report from here, which is fine by me.  Lots of sitting at home, doing chores around here and napping...lots of napping and lots of "I can't wait for bedtime."  I guess I am really tired, a lot.

That goes with the territory they say.  I have made it to the gym a couple of times and felt good while I was there, then would come home and CRASH.  So much for boosting my energy level.  I have to pace myself, save my strength for special occasions.

I did get down to the tile place last week--joined by Lindsay and Charmine.  We picked out the tile for the shower, a matching tile for the floor and a decorative glass tile for the accents.  I am so excited about our choices...it's going to look fabulous in there!  I'm not going to want to leave the bath! 

Sandy and I went Saturday and picked out a vanity top that's a marble composite.   I LOVE it!   We also bought a nice Kohler toilet and it has a great feature...when you put the seat down it drops it down SLOWLY...like those drawer closers that they have nowadays.  We got a "chair height" toilet.  It sits in the garage for now.  We'll install it ourselves after the guys finish all the work. 

Because I ended up getting ceramic tile for the floor instead of vinyl, I can now get heat installed in the floor.  I'm so excited about this.  We have little heat sources in our bathroom now...we usually have to run a little portable heater to keep from having ice forming on our noses.  I know that having warm feet won't stop the ice on the nose phenomenon but at least our feet will be happy!

And, I got paint samples and painted them on the wall, to help us choose the right one.  I'm very happy with the choice we made.  The one we all liked initially just disappeared on the wall...way too light.  Glad I tried the other samples.

I bought a kit to refinish the vanity cabinet.  The color I chose is called "Seaside" oddly enough.  I'm hoping I do the process right and it comes out looking good.  If not...well, I don't know what I'll do!

We are heading to Maine this weekend, leaving Friday AM and returning on Monday.  We'll be going to dock diving in Freeport I think it is.  I'm not paying attention to where, it's enough for me to know that we'll be in Maine. 

We are going to try Rocky at dock diving again...see if he can get over his tentativeness about the other people in the area, the other dogs, the noise, etc.  He's had a whole year of agility and all the confusion that brings to give him more experience.  We know he LOVES the water and he LOVES jumping into the water.

Denise offered her dock at Beach Pond for us to practice with Rocky and we are definitely taking her up on that offer!   It's right down the road and it is a great dock, with noise, people etc around to give him more exposure to those conditions. 

Perhaps dock diving, along with agility, will be Rocky's niche.  He isn't into the regular Russell games.  We want to find something he loves to do. 

We appreciated his reluctance to be like the other Russells the other night when he tentatively followed a huge skunk who was making its way across the yard after having just sprayed Truman in the face.  Sandy called out to Rocky, who turned around with a worried look on his face and promptly trotted back to us.  I corralled Rocky and Bubbles, while Sandy scooped up Truman, who was busy rubbing his face in the dirt, trying to get the stench off.

I mixed up the skunk smell remover formula and Sandy applied it...and IT WORKED!  Truman didn't smell.  Still some lingering whiffs of skunk smell in the guest bath, where she washed him down.  Not bad though for how bad he got hit with the stuff. 

That was our excitement for this week.

Next week we have to start packing up to move out of here while the men do the bathroom renovations.  Should be nerve-wracking.  I still haven't heard from Jim, the contractor.  He was supposed to get in touch with me by now so we could go over the final details.  I did email him and told him the additional jobs I want him to do, including installing the vanity top--if it comes in while they are still here working on the bathroom.  If I don't hear from him by tomorrow night, I'll call.

If I don't hear from Dr. McCourt I'll guess I'll have to call her too.  She was supposed to be looking at the clinical trial protocol and figuring out when I can start chemo.  I want to know when it starts, then I can start planning my calendar.  Since I'll be going for chemo weekly, I need to figure out a lot of things!  I hope they will be flexible about that once a week thing, especially if we are planning to go away in the RV. 

I will not let ANYTHING interfere in our RV trips!   I have my priorities.

Later.....

Finally...

heard from doctor when I pulled into garage after my workout at the gym and shopping trips to Stop and Shop, Home Depot and Campbell's farmstand. 

She said that they don't see much new on the CT scan Backus did...one "nodule" that had disappeared on their scans seems to be back again.  Why do they say "nodule?"  Why can't they say tumor?  They have all these euphemisms for tumor--"nodule"; "lesion"; "hyper density" and "hyper enhancement"--use language I can understand, damnit! 

Anyway, she said that there seems to be something going on..."brewing" is the word I used.  The fluid (ascites) is a concern...that's something new.  Most likely there are changes that the CT scan can't pick up yet. 

I told her I wanted to go on the clinical trial drugs.  She has to study the protocol and "do the math" to figure out when I can start the new chemo.  I have to wait 28 days from the last time I took the old clinical trial drug, Everolimus, which was on Thursday.   I may also have to have another CT scan before I start the drugs.  My CA 125 is now up to 218....it's going up steadily...so things are not good in there.

I'm hoping I don't have chemo until the first week of August...just in time for my 63rd birthday.  If I have it the end of this month, it will be complicated.  We will be staying in the RV in Lisbon...I'll need someone to drive me home from chemo AND someone to stay with the dogs in the RV...I can't leave them there alone...what if they barked the whole time?  So, Jean will have to dog sit and Sandy will have to drive me...or Sandy can drive me and the dogs can come along for the ride.  I don't need Sandy to sit with me the whole time...she can sit out in the car with the dogs and make sure they are okay.

So that's the story, Morning Glory...I'm still waiting to get the "math question" answered and to find out if I have to go for yet another CT scan.  I'll be willing to bet that I start this treatment on June 28th.  

I have my questions answered...the ones I cared about.  And the answer is:  the cancer is back and growing...somewhere that isn't totally showing up on CT scan...so it's not THAT big.  One of the drugs I'll be taking is a biological agent that responds to a different marker than Avastin, so it won't be like taking the drug that didn't work; and the other drug is a known chemo drug that has had some success against ovarian cancer.  A one-two punch.  It's not a blind study, I know I will be getting both drugs, no placebos in this study.  YAY!

Now we get back to planning that trip to Freeport for dock-diving the weekend after next and getting stuff picked out for the bathroom remodel.  In other words, the important things in life.

Later....

Tuesday

Waiting for Dr. McCourt to call to get my decision about what I want to do next...and for her to tell me how the Women and Infant's diagnostic imaging staff interpreted the CT scan done by Backus. 

I was supposed to have this call last Friday, but the disc that Backus sent to my doctor (via me) was blank!  This is the second time I have delivered a disc with (supposedly) my CT scan images to Women and Infants...and both times the disc was blank!  I am going to refuse to have any more CT scans done at Backus...the staff are nice and all...but.....

Anyway, I had a reprieve from making my decision while they worked on getting a good disc from Backus and getting it over to the experts to compare with my other CT scans. 

I made my decision anyway.  I'm going to stick with the "biological agents."  I have been getting Avastin, which is a biological agent...but it apparently is not working and it may have caused me to have an upper GI bleed.  So, I just say NO to Avastin and anything that might cause bowel perforations. 

I'm willing to give these new biologicals a chance.  They won't bother my bone marrow, they won't wear down my immune system and, unfortunately, they won't make me lose my hair.  I am really bummed about that...I do want to be bald again....BUT I can always just shave my damned head!

Okay, Dr. McCourt, CALL ME!   I have things to do!   I want to get to Home Depot to pick up small paint samples of a few of the colors I'm considering for the bathroom...paint them on the wall and then we can decide.   I also need to get over to Goodwill, to get some size 12 jeans and shorts.   I have a feeling that I won't be staying in that size for long, and I don't want to spend a whole lot of $$ for them, so Goodwill it is! 

Tomorrow I hope Charmine can join me in picking out tile for the shower and floor covering.  The bathroom project looms large in our future and I have not gotten much done since the decision to not remove any more damned wallpaper! 

I have to get the flooring up, the toilet removed, the choices of materials made and purchased and everything moved out for the guys to start work.  I have to get the RV packed and prepared for our "big trip" to Lisbon, where we will be staying while the work gets done.  Lots of stuff to do.

Good thing I won't have chemo this whole month to interfere with all the other things I need to do! 

Okay, Dr. McCourt...any time now!

Later...

Progression

When I signed onto to the clinical trial I started in December they said because I'm considered a "chronic ovarian cancer patient", I would stay on the drug until "progression or toxicity." 

Today they stopped the drug.  Avastin is what I have been taking, along with the drug that they are testing to enhance the action of Avastin, called Everolimus. 

Tonight I have to read a lot of material about two other drugs that are part of a clinical trial and taxol, a drug I have had in the past.  Tomorrow I have to give my answer regarding which poison I am choosing to take, the new combo drug or the taxol. 

I have had to change my goal of beating this cancer to a goal of "containment."   My doctor used that words with me today and I'm glad she did.  Now I am sure that she is a straight shooter and I don't have to worry about her beating around the bush and equivocating when it comes to the important decisions. 

So, we hope to contain this cancer so it doesn't spread.   I have to spend some time absorbing this information, so I can understand how it will effect my decision making in the future. 

I have had the blinders on from the get-go about this cancer...that's how I have coped with it thus far.
All "cheery, can-do, rally-round-the-flag boys" stuff.  And it has worked.  Not to say that I am dropping this attitude, I just have to be realistic too. 

The reality is that few in my situation get out alive.  That is the cold hard fact about ovarian cancer.  It's a real killer.  Just as getting a diagnosis of breast cancer or lung cancer a few years back was a death sentence, ovarian cancer at Stage Three or Four is pretty much a death sentence.

Those of you who need to hear cheery news, who don't want to hear about dying or the sordid details of this illness, stop reading this blog now and don't ever come back.  I won't judge.  It's all right.  I totally understand.  Not everyone wants to talk about or listen to this stuff.  I don't even want to have to write it...but I am going to write it...for selfish reasons, it helps ME. 

It helps ME to put these thoughts and events in writing.  It helps me to get some clarity, to make decisions, to prioritize my life.  People have frequently said to me "too much information"...I know sometimes they are joking, but sometimes they mean it...I do share a lot of information...more than the average person, I know that.  If this stuff is too much information...don't read it.

Anyway, long story short.  I started having abdominal pains last week when we came home from the JRT trials and then had a fever to boot.  So I ended up in the Backus ER on Thursday.  They did exams and a CT scan, which showed that I had ascites (fluid build-up) in my abdomen and they spotted three lesions (my word, not theirs), where my last CT scan done in April had only shown one.  I also was having black diarrhea this whole time...from my last chemo appointment up until yesterday, so for almost two weeks.  This is not a good thing.

The doctor at the ER told me that the cancer was back.  It really hadn't gone, there was one lesion on my previous CT scan...but the level was low.  Now it looks like things are growing, which may have been there all along, just not big enough to show up on the scan.

My doctor is concerned that I have been having an upper GI bleed, quite likely a side effect of the Avastin, which is notorious for causing bowel perforations.  She stopped my treatment effective today while she reviews the Backus CT scan pictures with the staff at Women and Infants. 

She presented two options for chemo to us today and I have to review them tonight, weigh the pros and cons and make my decision.  She will call me tomorrow to see what I want to do.

No matter which option I take I will be going to chemo once a week instead of once every other week.  I will also need to have the premeds that make me drowsy and incapable of driving myself home, which means I'm going to have to rely on someone(s) else to accompany each time.  I have been enjoying the independence of driving myself to and from treatments.  This is something I will have to adjust to, having someone else there.  Pardon me while I take a moment to swear, rather loudly.....

There....that's out of my system.  I don't want to resent the person who is accompanying me to the appointments, that would not be right.  So I have to get my head straight about this. 

One option is a clinical trial thing...a combo drug.  If I choose that option I can't start treatment until the end of June and it won't be until the end of July before we know if it's effective.  This combo drug also has a number of side effects, including rash (highly likely), which may require taking an antibiotic; fever and flu like symptoms for a few days following treatment and some other stuff which I'm not remembering now.  Oh, it doesn't cause hair loss...and I had been looking forward to being bald again!

The other option is taking Taxol...a drug I have had for two treatments (12 doses).  I would get it every week instead of the every three week interval that I used to have when I was on it.  I would get a lesser dosage so the side effects would be lesser too....bone and joint pain; hair thinning; and diarrhea.  I get diarrhea from everything it seems, so what the hell?

Right now I am leaning toward the combo drug.  Just because if it doesn't work I have Taxol to fall back on, but if I take Taxol and it doesn't work, or stops working, I may no longer be eligible for the clinical trial.  Also, and this is a big factor, I am in good shape physically right now and can better deal with the side effects.  What if Taxol worked but then I got sicker and then had to go to this drug and deal with the side effects while being sicker?   I think I would like to keep Taxol as my "Ace up my sleeve"...I'm familiar with the side effects, they wouldn't be as bad as I have had in the past (and I dealt with them no problem then) and at least I wouldn't have to deal with being really sick from the cancer AND having to deal with new side effects.

It all sounds like I can plan things and have it all work out the way I have planned.  NOT!  I have been humbled into realizing that you can only control somethings....and you better control the things over which you do have control.  Sound like double talk?  I know what I'm talking about.

Anyway, I am feeling much better than I did last week.  The pain is no where near where it was, my bloating has gone down.  If the bloating can stay down for the next 28 days until I get the next treatment (if I choose that option), I'll be good as gold!

Oh, I would be horribly remiss if I didn't also include mention of the wonderful time we had at the Jack Russell trial two weeks ago and the fantastic trip to Maine we made last weekend, when Sandy and Rocky ran in the "Canicross" 5K just outside of Freeport.   We took the RV to both events and had a ball....we LOVE that RV.  Jane came to visit and watch the race last weekend.  It was great to see her, we haven't seen her in a couple of years!

We have some great trips planned coming up in June and July and August and Sept and October!  Several trips to Maine, which we absolutely love.  We are going to go to Maine Father's Day weekend, to take the dogs to try dock diving again.  We think Rocky would love it, if he could get past his anxiety about "strangers" being on the dock.  He loves to swim in our pool...he goes nuts in the water. 

Sandy is putting the pool up this weekend and the garden is going to be planted.  I'm going to plant my tomatoes and herbs in pots on the porch.  Sunday I volunteer at the "Drive to Survive" event to benefit the Ovarian Cancer Coalition in Voluntown.  My friend Frannie is going to join me.  Saturday I hope to make it to the gym...have missed going there since I started hurting.  I have been keeping busy doing work around the house, RV and in the yard.  So I haven't been a total slug. 

In short, I have had a set-back with my cancer.  This is a serious set-back, in that this is the first time the cancer has returned WHILE I was taking chemo.  Not good.  However, there are still options I can take to see if we can't rein this in and get it under control once again.  Looking to the future, my goal is to keep it contained..live my life and hope for the best.  If I get "cured" I will be pleasantly surprised.  However, I must be realistic and say that the odds of that happening are NOT in my favor.  When my time is up, it is my goal to be as prepared as I possibly can so I don't leave a mess for others to clean up and to know when it's time to say "when."

That's something we can apply to many parts of our lives...knowing when to say "when."

Later.....

Progress

Today I had a therapy appointment and in retrospect I have to admit I have come a long way since I started therapy last fall.   That book on Ovarian Cancer has really helped me identify and deal with, some issues. 

Last week I talked with a friend about my feeling that I have to "cut some people loose"...distance myself from relationships that are energy-sucking, or unhealthy, or just no long feel good.  I was a little reticent to discuss my feelings with her, but to my relief, she understood completely what I was talking about, which has given me more encouragement to make what are some difficult decisions.

The decisions are difficult in that I don't want to hurt anyone's feelings.  I'm not going to make any pronouncements to these people that I don't want to continue as a "friend"...I'm just going to fade away from the relationships.   Other than the desire to not hurt anyone, the decisions are easy.  I know the relationships I want to ease out of...and deciding to do so definitely feels good and right to me. 

So now, with that stuff behind me, I can move on.  

I am still reading the book, albeit, very slowly.  I haven't read anything since last week.  What I read last week brought back a lot of bad memories.  

What is very interesting to me is that the author of the book was diagnosed at almost exactly the same time that I was.  We went through surgery, and subsequent recuperation around the same time.  We started chemo around the same time.  We were in the same clinical trial for Avastin.  Very eery.

Anyway, I read the chapter about her surgery and the aftermath of said surgery, and it really hit close to home.   We probably were sitting on the toilet, late at night at the same time.  I wish I had known, I would have called her and we could have chatted, comparing notes, to pass the time. 

Post surgery is a very dark place and I hope I don't have to go through that again.  I know I'd make it through, but it's not very pleasant, not at all.  The woman who wrote the book certainly documented most of the side effects and the unpleasantness.  She was very thorough. 

Tomorrow I have chemo and they will draw the CA 125 again to recheck those bad results we got last time.  Jean is coming with me to chemo and afterwards we are going to Trader Joe's.  She has never been there before and I have to buy a bunch of stuff for the weekend.  I love Trader Joe's.   Then we will go get lunch somewhere...probably the "Middle of Nowhere Diner" as I know she has that place in her mind.  When she used to take me to chemo we used to stop there sometimes on the way home.  It's our "special place."

Friday I have another Reflexology appointment with Christine in Rhode Island.  Then, when Sandy comes home, we are off in the RV, to the Hebron Fairgrounds for the New England Jack Russell Terrier Association Trial.   The dogs will be doing lure coursing, "going to ground", find the rat in the barn and other fun games.   Gina is coming down from Maine with her Russells so we will be catching up with her.  Fun!  

I went to Ross Hill RV park and made reservations for us to stay there the last week of June and first week of July, while the men are here working on the bathroom renovations.   I tried to pick a semi-remote site, with an open field on one side and the maintenance barn area on the back side.  The more removed the dogs are from other RVs, the better. 

They did do well at Acadia when we had other RVs all around us...but I just as soon not push it with them.   They are Jack Russells after all.

Sandy has been watching Howard Stern on AGT with me and we have both enjoyed the shows.  I tried to watch a few years ago, when Piers Morgan was a judge.  I didn't last more than a few minutes.  I really like it now.  I am a huge Howard fan but I think the combo of Howard, Sharon Osbourne and Howie Mandel is perfect.  They are all funny and recognize talent when they see it.

The Sox are coming back and I am relieved.  I do have that tattoo on my ankle and I'd hate to have to have it lasered off because I was so ashamed of my team.   They have a long road trip coming up and I'm hoping they continue to do well.

My nephew Andrew graduated from Eastern last night with a BA in education.  He's hoping he gets into grad school now and I'm hoping he does too.  There are no jobs out there.  Might as well stay in school.  My niece Virginia graduates from grad school soon.  She had a job interview for a teaching position and we are keeping our fingers crossed for her!  Both of them are such good kids, I love them.

Okay, time to make my dinner.  I'm having leftover chicken picata that I made the other night, using my new Eating Well with Cancer cookbook.  I love their recipes!

Later!

Okay, I was going to keep my mouth shut about this, but I am so frosted about the whole thing that I can't help myself.

Monday I went out with Pauline.  When I came home there was a message on my answering machine from Melanie, the nurse practitioner I saw last week at the Oncology center.  She examined me and interviewed me before Dr. McCourt came in to see me. 

Anyway, Melanie's message was that she was trying to reach me to discuss "some test results" with me.  She tried to call back at 7pm, but I just missed her.  She said she would be back to work on Wednesday.

Sooooo...this means I have to stew about this message for two days.  UGH!  Of course I figured out quickly that the results in question have to be my CA 125 test, which was the only test results that we didn't have at the time we met last week.  I figured that the numbers went up...but I wasn't worried about it because 1) the CT scan results were great and 2) this has happened before when I was on chemo and it was just a glitch.  The numbers came back down quickly.  

So I stew slowly since Monday night.  Even though I have it figured out, it still stays on my mind, because that's the nature of the beast, I suppose.  I even woke up this morning thinking about it!  So, I call her back this morning after I have breakfast...and it's just as I thought....but the number was ridiculously high....87.  It goes up to 87 from 5?    Sandy points out that inflammation could make that happen and guess what?  When I had the blood drawn for the test, I was still having some symptoms from the stupid UTI.  So, I am definitely sure that next week when they will run the test again, the number will drop back down.

 My doctor isn't concerned, she said she "wasn't impressed" with the CA 125 results.  She isn't considering changing anything about my treatment.  She will order the test again and I will have another CT scan in four weeks. 

So why am I frosted?  I'm frosted because they should have not told me about the results of this test until next week when I came up for treatment or they should have just left a detailed message, including what my doctor's reaction is about the whole thing.  I told Melanie this....next time just leave the message.  She is a very nice person...is very forthcoming with information (she's the first one to give me a copy of the CT scan report), but she leaves a message like that for me on the phone?  She won't do that again.  I also gave her my cell number and told her to use that number if she can't get me at home.

On to other updates.  I will be covering some Sun games this year, starting June 1st.  I may cover the opener on May 20th, but I have to check what time the game is, we are at the Hebron Fairgrounds for the Jack Russell games that day. 

Okay off now to enjoy this rainy sleepy day.

Later

Feeling much better as the antibiotic did it's work!  Went to chemo Thursday and saw Dr. McCourt before the infusion.  My CT scan results were great...the second tumor doesn't show up at all on the scan now!  The other one is only a centimeter long and holding there.  Hoping to make that one disappear soon...I think that's a good goal for me to have.

In my last post I alluded to decisions I am making.  One of the biggest is that I am FINALLY reading about ovarian cancer.  I have not read much information on this disease since I was diagnosed, mostly because most of what I did read was negative and I didn't want any negativity getting in my way.

I have evolved to the point where I can finally read about what "they" say about ovarian cancer and I have to admit what "they" say is pretty grim.  This doesn't bother me as much as the fact that I have allowed myself to think/feel what Sandy has been going through.   We talked about it the other night and she said to me "ask me any question you want."   I love her so.  We had a wonderful talk, which I am not going to share because...   Suffice it to say that I don't worry so much about how she is feeling/handling things.  She is a nurse, she knows about these things.  

We have always said that if something were to happen to the other one, we know that our lives would go on...and neither of us would allow ourselves to wallow in depression.  Loss is part of life after all.  And also...we both know that the partner who "departed" wouldn't want the remaining one to be unhappy.  We would miss the other, but we would live our lives.   I think this is a good attitude to have. 

Call me judgmental and I will accept that moniker.  I don't understand people who carry on grieving for years and years...and I know some people like this.  I think that in some cases, alcohol helps them continue to grieve.  I can't imagine that their departed partner would be happy about them continuing to wallow in their misery.  I suppose it's a mental health thing, but then I wonder why they don't go and get some help?

It makes me think of country western songs...where all that kind of behavior (endlessly carrying the torch, drinking) is celebrated.  In reality, there is nothing romantic, desirable or healthy about it.

Speaking of alcohol...I haven't had a sip in almost a year.   Can't drink when I'm on that clinical trial drug...can't go out in the sun for too long either, but I digress.  The subject is alcohol and I don't miss it one bit.  I look around however, and I see folks my age who still drink to excess...I mean getting drunk...and who's lives revolve around alcohol....and I don't want to be around them any more.  Call me a prude...there, another name to call me...a Judgmental Prude...but I don't want to be around people who are drinking too much.  Don't like the unpredictability, don't like the slurred speech, don't want the drama.

This is another decision I'm making....withdraw from those situations where I will be around people who are going to drink too much.

Now I get down from my pedestal.

Anyway, I'm reading a great book...a little at a time...I can only handle so much emotionally.  The book is called "Memoirs of a Debulked Woman:   Enduring Ovarian Cancer."   Debulking is what they call the surgical process of removing as much of a tumor as they can/as many tumors as they can.  I was "debulked" twice...in 2008, when Dr. LaChance removed as much of my omentum (the lining of your abdomen) as he could as it was "spackled with tumors...like lumps in frosting" and again in 2009 when Dr. McCourt removed as much of the tumor that still sits by my spleen that she could. 

The woman who wrote this book looks at the statistics for surviving ovarian cancer (20%) and isn't counting on being in the 20%.   This is where she and I differ.  She felt relief when she was first diagnosed because then she knew how she would die...most people don't get to know how they are going to die.   I felt relief, because FINALLY I knew what was wrong with me and we could get to work doing something about it.

I'm sure that it is going to be emotionally difficult for me to read parts of this book, it's already been hard and I'm just on the second chapter!  I don't agree with this author on her outlook on her prognosis, but I am learning a lot about myself, how I feel about things and how I approach things.

I am sure I will be making more decisions about relationships, how I spend my time and my money, what I keep and what I get rid of.  I may even drop out of contact for a bit...I need time to process things...a lot of things.

Good thing I have a therapist already on the payroll. 

Later....