It looks like we're heading to Pittsburgh on Wednesday.  The Hillman Cancer Center at the University of Pittsburgh has agreed to see us (whatever that means).  We have a consult appt. on Thursday to see if there might be a clinical trial for which Bill is eligible.  We're hopeful that the answer will be yes, our Drs. here think the possibility is good.  So, we're hitting the road.

Since Bill has been feeling so tired lately, he has a weekly standing blood draw order including a blood transfusion if necessary.  Yesterday we went in for the blood draw thinking that if he was to have a transfusion it would be Monday at the earliest, since his blood is so difficult to find.  I guess we lucked out because they had two units of his blood ready for him.  So we were at the Cancer center from 11:30-7:30.  It was a very long day.  Hopefully, the extra blood will help him feel more himself for a while.  

We would love to be out and about in this lovely weather although I don't think the State Fair is on the agenda.  As always, thanks for your positive thoughts, cards and prayers.  Holly

We celebrated our 35th wedding anniversary yesterday with a very nice dinner out at the newest Bristol in Jeffersonville, IN overlooking the river and the Louisville skyline.  It was nice to have a few hours to ourselves with nothing more to think about than food and the view.  

We saw the oncologist today and again heard some bad news.  The National Cancer Institute has turned Bill down.  It's ironic really.  He does not have a tumor big enough to remove, and they need to be able to do that in order for him to qualify for a study.  So I guess it was good that he does not have a large tumor right now, but then ...  So, we are now looking into the University of Pittsburgh to see what studies they might have.  We have reached a point where the only other option for Bill is more of the same treatment he had last fall only stronger.  Which you might remember almost killed him.  Dr. Miller, the oncologist, is not recommending that treatment yet.  He wants to keep looking for possible clinical trials.  So, we continue to wait.  

Bill is trying to deal with this news positively but, it's hard to take and he is feeling pretty down.  As you can imagine the fight wears you down.   We're going to try and stay positive, get out and do something fun as often as we can, when he feels strong in the meantime.  Thanks for those continuing positive thoughts and words of support.  We continue to fight.  

We celebrated Bill's 58th birthday yesterday with a small family gathering.  It was so nice to visit with everyone, Bill really enjoyed the day.  He feels pretty good, able to make it out for a couple of hours to do something most days.  He still has some pain but the pain medication seems to keep that at bay most times.  

We continue to be in a holding pattern with regard to next steps.  The insurance company has denied coverage of the clinical trial with Ontak again, so that does not appear to be an option.  We are checking with the National Cancer Institute to see if they might have something that Bill would qualify for, but so far no word.   Dr. Polk has also contacted the Drs. at MD Anderson Cancer Center in Texas for options, but no word yet.  So, as you can imagine it's a little frustrating and worrisome, but we're doing our best to stay positive.  

Bill still checks his email most days, so correspondence is welcomed.  We really appreciate those encouraging words and thoughts.  As always, thanks for your positive thoughts and prayers.  

We saw the oncologist today to discuss options.  I had shared with a few people that we discovered last week, our insurance will not pay for  clinical trials.   We were supposed to start a new treatment this week.  So now we  have a new game plan.  First of all, Bill will get a blood transfusion tomorrow if they can locate a match for him.  His hemoglobin was down to 8 ( normal is between 13-15) which is causing him to be anemic and extremely tired.  We will do that at the Brown Cancer Center in the morning.  

In the meantime, Dr. Miller (the oncologist) is going to contact the Dr. at Humana in charge of the "denials" and see if he can convince Humana to cover the clinical trial.  He is also contacting the National Cancer Institute in Bethesda, MD to see if Bill  might qualify for one of their trials which would be paid for with grant money.  So we are still in a holding pattern, although Dr. Miller wants to get something going within the next week or so.  The only other chemo option seems to be basically more of the same treatment he had last fall and winter, which as you know was extremely tough on him.  

Needless to say, we are feeling pretty down at the moment.  Hopefully, the blood transfusion will provide Bill with  strength and energy and allow for some normal activity for a while.  It's been such a good summer for us so far and we're grateful, it's just that we would like to see the good continue.  

I'll keep you posted.  Love, Holly

Next Steps

This morning we saw the oncologist, discussed the results of the latest PET/CT scan and determined our next steps in this ongoing battle against melanoma.  The scan showed some small spots in the bowel, which we knew from the last surgery were there.  It did not show signs of cancer anywhere else, still no spreading, which is  great news.  

Bill's vital signs are good, he has gained a little weight over the past few weeks and he is feeling pretty strong.  Given that, he has decided to take part in a clinical trial using the drug Ontak.  According to the Docs, Ontak is a drug that is designed to retrain one's immune system so that the immune system will fight the cancer cells.  The side effects are not as debilitating as chemo and the treatment is done out patient--no hospital yea!!  There are several preliminary tests that Bill will need to undergo in order to qualify for this clinical trial (to ensure that he is healthy enough to handle it) and if he qualifies the treatment will begin within the next couple of weeks. 

Although we are not looking forward to more treatments that may cause Bill to be weak and/or tired, we are grateful that the cancer is still contained.  He will undergo two cycles of treatment which will take about 2 months, and then he will have another PET scan.  If the films indicate that the treatment is working, he will have two more cycles.  If not of course he will stop the treatment and we will have to look at another strategy.  

We are trying to take things one day at a time, getting out whenever we can, spending time with family and friends.  It's not as easy as you might think to "live in the moment" especially when you have been a planner all of your life.  It has been so great to see so many of you as we have been able to get out.  

As always, we really appreciate your positive thoughts and prayers.  Please keep Bill in your prayers as he begins this next battle.  Hope to see you soon.  Holly  

Folly Beach Vacation

I have been meaning to get to this blog update all week, but the good news is we have been having so much fun at the beach that I did not want to come inside and write.  We got here, Folly Beach , SC on Saturday, June 27 and unfortunately it's already our last day.  The weather has been perfect, sunny and hot all week.  Bill got in the ocean a couple of times and he has been able to enjoy the sun and sand with us all week.  We feel extremely blessed.  We've had a big crowd with us, 15 of us all family and I can honestly say we're all still speaking to one another.  It has been just the break we all needed.  

Fanny was unable to come with us to the beach, but she has been having a wonderful time at home under the care of our friend Annie Herbert so we feel sure she is in good hands.  In fact, I'm a little worried that she may not want us to come home (Fanny not Annie) due to the fun filled week she's had.  

We will hit the road tomorrow and be home by Sunday afternoon hopefully.  I know your prayers and positive thoughts must be responsible for giving us this week of normalcy, it has been so great, Thanks.

Relay for Life

This past Saturday was the first annual "Cornhole" Tournament Fundraiser for the American Cancer Society in honor of Bill held in Northern KY at Amy and Troy's.  It was a huge success and raised about $1000 for the day.  Thanks so much to everyone who attended and/or donated on behalf of Bill.  We were blown away by the outpouring of support.  Everyone seemed to have fun, the weather cooperated and the food was delicious.  

Next Saturday we hope to return to Northern KY for the Relay for Life where "Bill's Lifeguards" will be among the many teams walking and running to raise money and awareness for cancer.  

We have two more weeks until it's time to leave for our beach vacation, and we're counting down the days.  Bill has not had much energy lately and he doesn't have much of an appetite.  We're not sure what's going on exactly, but we saw our surgeon last week and he wants him to have some blood tests run this week.  Hopefully, the docs will be able to give him something to help increase his appetite.  We're praying that this trip to the beach happens, we all need it.  

Right now, the plan is still to have another PET scan in July as soon as we return from vacation and then begin another round of chemo.  Of course in this battle everything is tentative, plans change quite often.  

So for now we're hanging pretty close to home, taking in a movie now and then and trying to get Bill stronger.  As always, thanks for your continued prayers and positive thoughts.  Holly