Updates from Kathi & Breezy
Hey Everybody,
Just a quick note to fill you in. It's been a little over six weeks since Breezy completed his radiation and chemo treatment. For the first few weeks after radiation stops, it's still doing a number on you ... then, gradually, you start to heal. Breezy is still mostly dependent on his feeding tube, but he is starting to incorporate things like yogurt and soups into his diet.
He had a cat scan earlier this month and everything looked good. They said some of his lymph nodes still looked a bit abnormal, but they felt that was most likely just swelling from the radiation. His surgeon didn't feel anything required surgery at this point. He'll have a pet scan in mid October and they will take another look. Sooo...we still can't totally rule out surgery to remove the lymph nodes, but it is unlikely.
We'll be making trips to Fox Chase about once a month for a little while for follow-ups with various doctors. In the meantime, Breezy is doing his "tongue and swallowing exercises" to counter the effects of radiation and trying to incorporate more and more real food into his diet. He still doesn't have much of a sense of taste, but it will eventually return...and his appetite with it.
We will never be able to thank all of you enough for your kind words and generosity. The Breezy Fund has been and will continue to be a great help to us. We are doing fine at this point in time and no further contributions are needed. Thanks so much!!!
Recovery is slow, but he'll get there eventually. We were out this past weekend and Breezy had his first beer that he has had in months. It was just a little pony size Corona...but Giddyup !!! (Photo attached)
Take Care,
Love,
Kathi
PS Here's an interesting side note. Some of you know about this, but other's might not. Last Fall, the crew from the HIstory channel's show "American Pickers" came here and spent a few hours filming. Someone told us they were looking for people who had lots of collections and lots of stuff, so Breezy got in touch and a few weeks later they were here. We weren't sure if we "made the cut" or not, but we just got a call a few weeks ago and we were told we would most likely be on sometime in November. http://www.history.com/shows/american-pickers
July 19, 2010
Hello there,
The good news is Breezy is done with his seven weeks of chemo/radiation. His last day was a little over a week ago on Friday the 9th. There is a bell on the wall at Fox Chase that everyone gets to ring when they finish up all their radiation treatments...we rang the shit out of it!! The bad news is, as we were told to expect, the last few weeks of treatment and especially the week or two after the treatment ends, can be some of the worst. (The radiation continues to do a number on you for a week or two even after they stop treatment.) The good news is...the morphine that was prescribed does take care of the pain. The bad news is, it REALLY makes you constipated. He was already dealing with that issue because of the feeding tube diet, so adding the morphine has only added to his problems There's not much you can do about it other than to keep trying different remedies...and trust me, he's tried them all. Once in a while something will finally work. It's an ongoing struggle.
His doctor's feel the constipation issue is a minor concern relative to everything that he has just been through. For some, the side effects are much worse. They still feel he has come through this with flying colors. His blood work is always good and he has not felt as "wiped out" as some people feel. They always comment that the inside of his mouth looks really good...it is raw and sore of course, but not nearly as bad as some they've seen. The skin on his neck looks like he has a really bad sunburn, but, they say...it could be much worse.
How is he right now? I think he is getting a bit tired of all this and there were some low points for him over the past few weeks. But, he's hanging in there and he should be turning the corner in another week or so and start slowly feeling a bit better. Yesterday he said he thought his throat actually felt not quite as sore...so he could be on the "upswing" even sooner than expected.
Here are all the answers to the most common questions friends have asked. Yes, he can talk ...his voice is a little raspy at times, but talking is not a problem. He is not bed-ridden. He's just been putzing around the house, stopping every few hours to download a can of food into his feeding tube. He's been reading a lot or watching TV or organizing one of his many collections. He hasn't gotten out too much, so company is usually a welcome break. Give us a call and stop in.
It is SO nice not to have to do the daily drive to Fox Chase. We still go there about once a week for followups and we will be meeting with his speech therapist a few times over the next month to work on "swallowing". As the radiated area heals, scar tissue can build up so he needs to do a number of "tongue exercises" to keep everything working well. About five weeks from now, after all the inflamation goes down, he'll go back for another CAT scan and they'll see how everything looks and decide at that point if he needs any surgery. They say it is unlikely, but they can't tell us that definitively at this point. Then, two weeks after that, they'll do another full body PET scan before they give him the "all clear".
The move back to solid food can take weeks or even months. They say it's a slow process and that everyone is different. It takes a while for your throat to heal enough to swallow without discomfort and for your taste buds to return. We have tentative plans for a vacation in Santa-Fe in early September. Hopefully, by then, Breezy will be able to eat some normal foods and traveling will be possible. That is our goal at this point. (A big heart-felt thanks to our friend Cynthia for her overwhelming generosity in helping us with our travel plans!!!)
I'll be sending out one or two more updates after the scans. Thanks to all of you for listening and caring.
Love,
Kathi and Breezy
Hi everybody-
Breezy is five weeks into the seven week chemo/radiation phase of his treatment. All along, we knew this point would be the hardest part...and it is. The upside is he only has two more weeks to go...woohoo...they are nearly done frying his throat.
At some point about two weeks ago he totally lost ALL sense of taste. His throat started to feel sore at the same time, but initially it was more the lack of taste buds that was making eating a chore. He very quickly moved from soft food to liquids, to using his feeding tube. Right now he's doing a few smoothies everyday but mostly relying on his feeding tube. It's not been an easy transition. As you can imagine, your stomach
is a bit confused...not to mention your colon. Liquid nutrition makes you feel bloated and full all the time and on top of that you are constantly dealing with feeling constipated. Then you try all sorts of different remedies (traditional and alternative) for being "backed up" and then your stomach feels upset and sometimes you wind up with the opposite problem. Getting nutrition in...and waste products out...this has been his biggest dilemma.
We've experimented with all sorts of things to help keep his weight up and make him feel more comfortable. The canned nutrition they gave us to use with the feeding tube is based on whey protein. He felt so uncomfortable and "full" the first week or so, I just couldn't get him to take in enough calories. We didn't know if it was the type of canned food...or just that it was a liquid diet. At any rate, it was difficult to think about his total diet being based on a formulated processed food source, so I researched other options.
We thought maybe a different formula, something based on real wholesome organic food would work better. After some extensive online research, I found others who were on the same quest and discovered a number of "tube feeding" recipes. I went out and bought a Vita-mix, which is what you really need to get food to the proper consistency. (thanks to all of you and the Breezy Fund!!!). I've been making him liquid meals with organic chicken or with salmon. I add in juiced veges and all kinds of other good stuff (cod liver oil, etc.) It takes a long time to make just a few "feedings" so I am supplementing what I've been whipping up with a different canned formula I found that is made with chicken and veges. It's not organic, but it's real food and it gives me a break. His doctors approved it and we got his insurance to cover it. He can only take in about 250-300 liquid calories at a time, so he needs to "feed" every few hours. He uses a gravity feed type system into his feeding tube. We just hang the bag off our "monkey lamp" next to his lazyboy. There's a sentence I never thought I'd write. ( See attached photo )
The daily weekday drive to Fox Chase is going amazingly well. On Thursdays we spend the night at the Hope Lodge and he gets his Friday radiation first thing in the morning. That cuts out one trip and gives us a longer weekend.
At the end of his therapy two weeks from now, he'll still go back for fluids twice a week for a little while.
It will take a few weeks before he starts to feel better. It's a slow process, but gradually his taste buds will return and his throat will start to feel better. It can take six months to a year for a "full recovery", but he should start be able to enjoy some foods within a month or so. One month after therapy stops, and all inflammation has gone down, they'll do more scans and we'll see where he's at. They'll decide at that point if any surgery is necessary. It's not looking likely at this point, but it can't be ruled out.
His doctors think he is doing amazingly well. One nurse called him an enigma. I said "ha, ha...you have no idea". Most people are on major pain meds by now. He has a prescription for morphine, but he has not felt the need to use it. That could change in the next two weeks, but other than the "food in and out" issue, he is doing extremely well. He has lost some weight, but that is to be expected. No more Buddha belly. His throat feels a bit more sore each day, but so far he is tolerating it. He is a real trooper. If ever there was a test of his disposition, this is it. He is the Breeze, and the dude abides.
Love ya,
Kathi and Breezy
June 4, 2010
Hello all you wonderful people,
We are into the seven weeks of radiation. He also gets a chemo treatment during this period. It is a mild chemo once a week that helps the radiation do it's thing. Today will be the end of week two and he is fine so far. They say to expect the sore throat and trouble eating to start sometime around week three. It sucks that he needs to go through this, but we were told that even though his tumor has shrunk down to nothing...without radiation there is a 100% chance of reoccurrence.
We scheduled his radiation at Fox Chase for 5:15 each day, Mon. through Fri. It's an hour and a half drive, so most days we leave here around 3:30 and, if we're lucky and don't have much of a wait, we are home by 7:30. Mondays are longer days since we need to be there by 1:00 for chemo and fluids first ...and on Thursdays he also gets fluids first, so we need to leave a bit earlier. But it's all working out. Somehow, you just do it. The drive is not so bad. It's become our routine.
The next six weeks or so will be a bit rough. I've got my blender and juicer ready to go and he has prescriptions for some pretty heavy duty pain pills. They also give you something they call "magic mouthwash" that helps dull the pain in your throat so you can get food down. They say to try and swallow as much as you can on your own and only rely on the feeding tube as needed or as a supplement to help keep your weight up.
We are both bracing for this next period, but we are plunging forward, buoyed by the knowledge that his prognosis is looking really good at this point.
Kathi
PS This coming Monday, June 7th, is a chemo/radiation day and it's also his birthday.
April 14, 2010
Hi-
First of all, thanks SO much to everyone who made it out to Breezy Fest on Sunday. And even more thanks to all of you who helped make it happen. Thanks to my good friend Karen Feridun who managed to pull it all together. Thanks to the Plutonians for playing. The list could go on and on, but I'm afraid I'll forget someone if I start naming people...you know who you are...and you know how much all your efforts mean to us. We will both always look back on it as one of the best days in our lives!
Here's some really good news. We went down to Fox Chase on Tuesday to get his blood work done and for another follow up with his oncologist. Once again, his blood work was fine and they didn't feel the need to give him anything. But, both the oncologist and her "fellow" took one look at him and said it was visibly apparent that the lymph nodes on his neck have shrunk quite a bit already. Then they both felt his neck and confirmed that they have definitely shrunk. They said it is what you would hope for at this point, but it's not something you can always count on.
The third round of chemo starts on the 23rd and ends on May 14th. They said that if he keeps tolerating it so well, they probably will go into the 7 weeks of radiation right away. There is a chemo with that too, but it's a much milder version that you get once a week. It basically just helps the radiation work a little better.
Thanks for all the positive energy we've been getting from everyone. Everyone kept commenting on Sunday that you could feel the love in the room. We felt it too. We were overwhelmed with it. I'm sure it has something to do with things going so well so far. Down at Fox Chase they have all these little signs everywhere that say "Cancer versus love"...kinda sappy... but... I think love is kicking the shit out of Breezy's cancer.
Luv you guys,
Kathi and Breezy
April 9, 2010
Hi everybody-
Just a short note to let you know that Breezy is still tolerating the chemo phase of his treatment pretty well. We went down To Fox Chase on April 1 for his second round. It takes a long time for the chemo infusions he gets. They give you fluids in between, so the whole process takes 4-5 hours. They put you in a recliner with a little attached TV. They were running a "Stooges" marathon all day that day since it was April Fools day, so Breezy was entertained while he was "infused". Then, before we leave, he gets his "pump" attached, which slowly pumps the one type of chemo into his system for a few days . Four days later we go back down to get the pump removed and get more fluids.
The nausea part takes a few days before it hits ya. They say the chemo drugs accumulate and you might feel a bit worse after each round, but the nausea this second treatment wasn't much different than the first time. He has found which medications work. Actually he finds ginger works as well as some of the stuff they give you. This past Tuesday we went to see an old friend, Lisa Baas, who generously offered him acupuncture treatments to help with the nausea.
Today the nausea is starting to wear off and we are really looking forward to the "Breezy Fest". He expects to feel fine by Sunday, but he will be in the "Nadir" period, which means his blood cell counts will be low and he will be susceptible to infection. Sooooo....unfortunately he won't be able to accept hugs and kisses ( I'll take them for him ) PLEASE REMEMBER NOT TO GIVE HIM A BIG HUG WHEN YOU SEE HIM.
If you are planning on going on Sunday, but forgot to RSVP, please call Karen Feridun ASAP and let her know you are coming.You can fire an email to <reservationsforbreezy@gmail.com> or call 610-678-7726.
If you signed up on Facebook, you still need to "officially" RSVP. Please help out our friends who are organizing all of this. It looks like there will be about 200 people there as best they can tell...so this is a huge project.
The Plutonians have been getting together for practice sessions.The word is that they all are really enjoying playing together again. That made me feel so good...what a great thing to come out of all this. I can't wait for Sunday, I have a feeling the music will be incredible. Hope to see you there.
Love all of you,
Kathi and Breezy
PS Almost forgot. Check out the article about Breezy in today's Reading Eagle. The print version has
a nice photo with it that's not available online, but here is a link.
http://readingeagle.com/article.aspx?id=211519
Hi everybody,
March 11, 2010
Hi everyone-
For this "induction chemotherapy",they use three different chemotherapy drugs and there are three 21 day cycles. On "day one" he gets two of the chemo drugs and a third one is delivered by a pump system for the following four days. After four days, the pump would be removed. He would feel like shit for a while, (starting about 4-5 days after the initial treatment) but would probably have a week to ten days at the end of each cycle where he'd start to feel o.k. Then you start all over again. During this time, he would be getting regular weekly checks at the hospital to keep an eye on his fluids and blood count.
His "team" of doctors at Fox Chase had been trying to decide if he really needs this additional therapy or not. There are some down sides, but they mainly have to do with the concern that the patient can tolerate it. There is also a concern that it could delay the start of the chemo/radiation part of the treatment if the patient becomes too ill. This is a newer concept and there are not enough studies out there to prove it really adds any additional benefit...but there are some promising case studies. I know his oncologist has reached out to other colleagues in her field to discuss his case. It's not a clear cut decision. On one hand,his prognosis with just the traditional 7 week chemo/radiation treatment is good, mainly because there are HPV (human papilloma virus) markers in the tumor and tumors of that type respond very well to radiation. On the other hand, it is a very large tumor and lymph nodes on either side of the neck are engaged. It is the size of the tumor and the lymph nodes on either side that is making them consider the additional chemo. They have also taken into consideration that Breezy is relatively young and healthy and should be a good candidate to tolerate the induction chemo. It will make the whole process much longer and more painful, but when you consider that you are trying to basically save your tongue, it certainly seems worth it. The fact that they think the 7 week program could do the trick and that this additional 9 weeks is basically added insurance makes us feel pretty good. If they could shrink everything down with an initial chemo, then the radiation might not be as damaging. Smaller targeted areas, not as much damage. There was discussion about having this initial chemo treatment done at Reading hospital, but the head of the team at Fox Chase wants us to continue to do everything there.
Hi everybody-
http://www.flickr.com/photos/47773705@N08/sets/72157623350297463/show/
February 17, 2010
As of this past Monday, we thought Breezy might not be able to get started down at Fox Chase until March 15th. After numerous phone calls yesterday, we have a new schedule.
Breezy's next appointment at Fox Chase will be on March 2nd. That day he will meet with the oncologist to discuss his chemotherapy and with the radiologist to get everything set up for his radiation treatments. Then on March 5th, Dr. Ridge will do another biopsy and will take a look around "in there" and they will also put in his feeding tube at the same time. They want to put that in right away even though he might not need it for a while. He will spend the night in the hospital that night and we'll come back here sometime the next day.
We assume his chemo/radiation treatment will start soon after the 5th. We hope to drive back and forth the first week or two and then we will be staying at the "Hope Lodge" during the week and coming home on weekends. Check out the lodge, it's really pretty nice.
http://www.fccc.edu/patients/resources/lodging/acsaz-hope-lodge.html
We will have to play it by ear and see how he feels and how the driving goes. Maybe we'll start staying at Hope Lodge sooner than we expect to. Plenty of friends have offered to take turns getting him back and forth the first few weeks. The radiation therapy only takes about a half and hour (plus whatever wait time...which we have been warned can take a while)). The drive is about an hour and a half, but it is a simple straight line down on the turnpike.
We also have plenty of friends who have offered to help take care of the house while we are gone. We will either have several friends on a drop-by schedule or better yet, find someone who is willing to actually stay here during the week. There are a few potential people available for that option, but we haven't confirmed anything yet. If you know of anyone,let us know. It needs to be someone very reliable, since they would be needing to learn to tend one or two coal stoves in addition to feeding 6 cats and two sheep.
Monday night was the first fundraiser. Even with the snowy weather predictions there were about 130 people who managed to show up to watch "The Big Lebowski" at the Strand and then went to the "after party" at the Tavern. For those who missed it because of the weather (totally understandable), the one bit of news is that Breezy proposed to me in front of everyone before the movie...so he is now officially "my fiance".
Thats all for now,
Love,
Kathi
We went down to see a team of doctors at Fox Chase yesterday and spent the whole day there. They have a whole department dedicated to head and neck cancers lead by a nationally renown surgeon, a Dr. Ridge. They feel we need to seek treatment there because of the type and severity of Breezy's cancer. By the end of the day, we were convinced that they are right . It is going to be logistically challenging, but we need to find a way to make treatment at Fox Chase work, despite insurance and distance concerns. The first step will be an exploratory surgery by Ridge later this month. He still recommends 6-7 weeks radiation and chemo, followed by surgery on any remaining cancer, if necessary. We were warned over and over that we are in for a rough ride. There is a free facility called the "Hope Lodge" five minutes from Fox Chase that we can stay at as needed and we are working with a wonderful social worker from there who will be helping us work out the details. It looks like we won't be starting treatment until after Ridge takes a look...so radiation and chemo might not start until later this month. We might try driving back and forth for the first week or so, but once he really gets into treatment we will most likely be staying down there during the week and just coming home on weekends. We'll have to figure out all those details as we get into it. It is very hard to accept, we hate the idea of being away from our home, our cats and sheep and, needless to say, all of you, but it seems to be what is necessary. Hopefully, we can make arrangements for friends to help keep an eye on our home and our beloved animals when we need to be away. We will keep all of you updated. It's hard to accept the idea of being away from home, but we will know we are getting the best treatment possible, so we feel we have no choice. We had "the shaving of the beard" ceremony here this past Monday with some of Breezy's good buddies. ( This was documented and photos and video will be available at some point) Actually, with this turn of events, we probably could have put that off a bit, but, oh well...it had to happen at some point along this road. If some guy knocks on your door claiming to be a Jehovah witness, you might want to take a good look...Breezy is looking forward to fooling a lot of people with his new look. Just look for the great disposition and the smiling eyes...that is hard to miss. We cannot overstate how much the love and support of all of you has meant to us, Love you all, Kathi and Breezy
Hello to all our wonderful friends
