Great News

I guess I better fill everyone in on the last Dr appt.  We found out  the CT scan showed "No evidence of disease", which is great news!  His next scan will be in six months.  He also got the go ahead to have his port removed, he is extremely excited about that.  He has a love/hate relationship with his port (his port is the device that is surgically placed under his skin, by his collar bone that is direct access to his vein, this way he didn't have to have an IV, ghe just accessed his port).He was glad he had it during chemo, but he is ready to sleep on his right side and he was unable to go hunting with the boys last year, so I know he is ready for this year.

Dr M. said the symptoms he is having is just lasting effects from chemo and radiation and we need to give it a full year before he is going to start to feel like himself.  He said not to expect so much so soon :-)

Thanks for all the prayers.


:-) Delana

Please Pray

So much has happened since my last post.  Dust finished his last radiation without too many problems.  He didn't have the horrible stomach issues that we were told he might have, his main problem was fatigue.  He had a hard time keeping his eyes.  We were happy to get back home to our house, our boys and our babies (Bean and Baby).  We did enjoy Tulsa for the 4 weeks we were there, but we decided the next time we spend 4 weeks away from home we are going to Hawaii. 

After his radiation treatments he went back for a 2 week follow-up with the Radiation Oncology NP and his favorite Oncology NP, both said he was doing great and he would have a follow up scan in October (this appointment was back in August).  Since then he has been doing OK, he has tried to walk every day (he is up to 5 miles a day).

 He was slowly getting his energy back.  About 4  weeks ago I  noticed he was sleeping longer, his color was pale and his abdomen was getting bigger (like it did when he was first diagnosed).  He also started complaining of increased back pain and stomach burning and pain.  I called his oncologist and they wanted a scan sooner than October, but his Dr was on vacation (no Dr, no scan).  After a few days they called back and made an appointment for the scan to be 9-17, then to see his Dr for review 9-21.

Dustin is in Tulsa getting his scan as I am writing this.  We will wait until Friday for the results, that will be the longest 4 days!

Please pray for a clean scan and that his symptoms are just left over side effects from radiation.

:-)  Delana

First Week of Radiation

Well he had his first week of radiation treatments last week, 5 down 13 to go. 

Last Monday we got up and I took Tyler to the DMV to take the driving test to get his license, bless his heart he was so nervous, but he did great and passed.  So what do we do....we throw him his keys and we leave for the week, we drop Logan off with my parents and off to Tulsa we went.  For Dustin's radiation treatments we have to stay in Tulsa for the week and we are coming home on the weekend.  So Tyler has the most important job of all, he has to take care of the babies, he is taking care of Bean and Baby Girl!!  I don't know who is more miserable Tyler or the babies!

When he went in for his very first treatment, of course neither of us really knew what to expect.  People have always told us that it takes longer to get set up than it does to do the actual treatment, well they called his name and he went to the back.  I decided to get my phone and check out what was new on Facebook...it didn't even get loaded before he was back and ready to leave...lol now that is fast.

So far his treatments haven't been too bad, he does have some redness on his stomach and his back but he said it really doesn't bother his too bad.  He is just starting to have some stomach issues and he is not too thrilled about that!  The worst right now is back pain, not the normal pain, we are calling this  radiation pain.  All in all he is doing really well.

There have been so many blessings happen in our lives this past week! Sometimes things happen and all I can say is, "It was just a God thing", there is no other way to explain it.  Dustin and I are fortunate to have the American Cancer Society pay for our hotel room.  We found out my aunt is having back surgery in Tulsa and is going to be there for 3-5 days and my mother is going to stay with her.  Last week when we got to our hotel I looked across the street and the building said "Tulsa Spine......".  I called my mom, and could not believe it, out of all the hotels in Tulsa we were staying across the street from the hospital that my aunt was having surgery!  We would be at this hotel for the next 4 weeks, not only would we be there for my family, my mom had a place to stay!  That's a God thing!!

I want to thank everyone for keeping an eye on Tyler and keep up the good work :-)

New Game Plan

To catch everyone up, when we last saw the oncologist in April, we found out that the PET scan was good and there was no evidence of disease.  Dustin was finished with Chemo.  Dr. M did was us to see a radiation onc just to make sure Dustin didn't need radiation, Dr. M was certain he would not need radiation because he did not have a tumor or a large collection of lymph nodes to radiate.

We were very happy and excited with this news, we had been through a rough 9 months, so we decided to go on vacation to the beach.  Dustin was starting to feel better, the side effects of chemo were just wearing off so my parents and the 4 of us headed to Florida.  We spent 6 days in a condo on the beach in Ft. Walton Beach.  We had a great time.  Dustin was still tired some days, but he took one for the team and slept on the beach.  I could not have asked for a better family vacation.  Wonderful memories were made that week.  We all decided when we win the lottery we will be buying a 2nd house on the beach ( I need to remember to buy that ticket!). 

So that brings us to today.  We went to the radiation onc appt today just as a formality, like Dr. M said he wouldn't need radiation, "We just want to see what she has to say".  So we met with Dr. N this morning, she was extremely kind and thorough, she started from the beginning and explained all of his PET scans and pathology.  Sadly his onc had not explained anything to us the entire 9 months we saw him. 

Dr. N explained that since he had spleen involvement and spine involvement he would need radiation.  He would need 18-20 treatments, needless to say this is not what Dustin was prepared to hear.  Dr. N continued to tell us his type of radiation was going to cause nausea, vomiting, burning hemorrhoids, radiation enteritis (eating followed by immediate diarrhea) for up to 1 year.  He starts this process Monday.  He is not too happy or excited about this but knows it has to be done.


:-) Delana

Waiting Game

Dustin had his PET scan this morning. Now we will have the longest 7 days until we travel back to Tulsa to get the results. I am sure we will do our best to keep busy until then! I haven't been feeling too well this past week, Lupus has decided to show up to remind me it is still here and can cause he!! on my body! My hands and hips have really been giving me problems, so Tyler went with Dustin this morning to his scan. Tyler is NOT a morning person, he takes after his uncle Dwight, I remember my mom trying to wake him up for school each morning and he was such a bear, well Tyler acts just like him! Tyler was in my room this morning at 4:30 am asking if I forgot to wake him up. He didn't need to get up until 5:30! But he was excited to be able to go with his dad :-) We have keep them away from the tests, chemo and other ugly things for now but I was glad Tyler went today, it was good for Dust and Tyler (and my dad didn't have to go, Thanks Pooh!!). After the PET Dust and Buddy went back to Pizza Shoppe, I have a feeling we will be going there every trip to Tulsa now 7 days and counting. :-) Delana

Picture Day

Here are the promised pictures from yesterday and some others I think everyone might enjoy.

This is Dustin's favorite nurse, Annie.  She is hopefully giving him his last chemo treatment.

This is Annie charting at the little desk they have in the middle of the room.  She is the sweetest nurse!  Plus she told Dustin how to get to Pizza Shoppe....bonus points for her!!!

This is Wanda giving him his Neulasta injection.  They go in the back of his arm and they burn like fire.  He hates them.

His Pizza Shoppe pizza!  He was like a kid at Christmas when we got there.  I have to admit it was really good and made us both remember when we were younger (much younger) and we would go there with each other.  He was only able to eat what u see in the picture before he started to feel bad :( but it was worth the drive to see him so excited.

Back at the room after treatment.  You can see what the spidey juices do to him, the dark circles around his eyes always show up.

Had to show the best blueberry pancakes I have ever had.  We had breakfast at The Wild Fork before his chemo this past Wednesday and it was awesome.  He had a plain pancake (of course) and he said it was good too.  We usually go to McDonalds, so this was a step up...lol


Now for pictures of "The Babies".

This is Beanford eating a ham bone.  It looks like he is smiling....kinda creepy.


These next pictures are for one of my great friends Betty, otherwise known as "McFarland".  She said I never posted any pictures of our other baby, Baby Girl.  Well Betty, Baby is crazy! She keeps us on our toes and keeps us laughing.  I tried to get a picture tonight and this is what happened. 

Dustin took this picture of Baby last week.  She is laying on his lap holding a little stuffed toy.

Last but certainly not least.  Our baby boy turned 14 this week!  I know some family has not seen him in awhile so here he is.  That is my dad behind him and it should explain a lot to my friends on why I am the way I am....lol

;-) Delana

Last Treatment??

Dustin may have had his last treatment today. He has a PET scan next Wed and we get the results the following Wed, if all is clear we go home and say good bye to Hodgkins, if there r still signs of cooties we do 2 more cycles (4 treatments) or we may have to do a stem cell transplant.

So today on the floor of the treatment center the nurses knew today could be his last but you don't want to jinx it, so we told them goodbye but in the back of our mind both of us were thinking "I really hope this is good bye!!"

Today went perfect for Dustin, he had his favorite nurse and he did not have to wait on his meds! We were out of the hospital by 1 pm today, that never happens. We had a celebratory lunch today, he found the only Pizza Shoppe in Oklahoma, it was about 30 miles away but he said he was going!! It was awesome, it tasted just like the ones in KC.

His last round was pretty rough on him, the fatigue, bone pain and nausea about did him in. I really hope this round is not so bad but unfortunately it probably will be. I just have to remind myself this could be the last one. Dust and I pray it is the last one and I know we have many friends and family praying for us!

I have pictures from today but I am unable to post withy phone, when we get home I'll post them.

:-) Delana

Dear Blog,

Dear Blog,

Please forgive me, I have neglected you so much this past month :-( The week before the last treatment (3 weeks ago) Logan was really sick. He had fever for 3-4 days (101-103), and ended up in the ER for IV fluids and antibiotics. He ended up missing a whole week of school! And u know Logan is sick when he doesnt talk for 3 days, it was a miracle :-) It was fun trying to keep him away from Dustin...NOT! I was so nervous Dustin was going to get sick. Dust wasn't the lucky one, I was... His last treatment (2 weeks ago, as Logan was getting better) I woke up in Tulsa and thought I was dying! My body hurt so bad I was just about in tears, I had chills, and was nauseous. We still had to get his injection then we could go home... It was one of the longest days of my life...I felt so bad and just wanted to be home. When I finally got home I found out my temp was 102.4...I went straight to bed. I was sick for 4 days... My mom helped with dinners for us, but I didn't eat for 4 days. Tyler was our nurse, he made sure Dust and I had water, Gatorade and anything else we wanted. He was really awesome!! Dustin did OK with his treatment, his 3rd day was pretty rough but he is not going to let cooties get the best of him!

The timing of me getting sick couldn't have come at a worse time...Dustin felt like crap and his blood counts were low due to the chemo so he couldn't be around me, so I was banned to our bedroom and he stayed in the living room. I felt awful because I couldn't take care of him, but hopefully I will stay well now.

We are in Tulsa now, he just had his treatment this morning. It went well, he is tired today. After chemo today we went to eat and for those that know "picky eater" Dustin u are not going to believe this but we ate at PF Changs! And he liked it!!! I really think the Spidey juices have not only changed his taste buds but also since when would he even have WALKED IN PF Changs, he is actually trying different foods!

After today he has 2 treatments left then a PET scan to re-evaluate. Believe me he is counting the days...if u ask him Chemo SUCKS and that is putting it mildly.

That's all I have for now...I promise to do better on posting.

Delana :-)

Dustin Embarrassed??

I have been with Dustin for over 21 years and I can honestly say I have never seen him embarrassed or turned red, I wish he could say the same about me. My brother used to embarrass me for sport and Dustin was usually around. Today I a actually saw Dustin turn bright red for the first time (his bald head can get red really quick!!). First I must give a little back story .... We have made it a game to figure out who Dust looks like now that he has no eyebrows, eyelashes and is completely bald. We have come up with Festes from The Adams Family, Voldemort from Harry Potter, Mr Clean, and Dana Carvey plays "Turtle Guy" in Master Disguise. We ( OK..me) have had a lot of laughs with this. Today Dust was to see the nurse practitioner, Julie, she is adorable... She looks like she should still be in high school!!! Before she came in the room Dust was saying that when she examines his abdomen he feels like the pilsbery dough boy... He said he was going to make the "he....he" when she touched his belly!! Of course we were laughing when she came in the room... She started to examin Dust and he got tickled, she touched his abdomen and he lost it, he could not stop laughing, Julie looked completely lost so I told her about the pilsbery dough boy and she poked his belly and said "he...he"!!!! It was hilarious!! Poor Dustin was as red as he could be, but he was also laughing so hard he was crying. We also talked about "who does Dustin look like game", Julie came up with Dr Evil from Austin Powers!!! We left the Dr in tears we were laughing so hard, we know they must think we r nuts... Oh well we would rather laugh than cry!!!

:-) delana

Too Funny

We saw this on a forum we frequent and we could not stop laughing.  I know some may not find it as funny as we did, but we were laughing out loud the first time we saw it :-)  We have watched it many times since.  Enjoy....

:-) Delana

Cycle 4

Well this treatment was the beginning of cycle 4.  He has had 7 treatments so far ( 2 treatments equal 1 cycle).  He is going to have 6-8 cycles ( 12-16 treatments) depending on the next PET scan.  We had a heart to heart with Dr M. on Wednesday... we just needed him to explain why he was satisfied with the last CT scan as there really has been no change since the beginning of chemo.  (Dustin and I are in contact with a wonderful site, lymphoma.com...it is a "support group" for lymphoma patients and their care givers...many patients have clear scans at this point in their treatment)  Dr. M explained there was no progression of the cooties so that was a good sign, he would have liked more of a decrease in his lymph nodes but he would take no progression.  He said he was going to get  a PET scan around the 6 cycle mark.  He did offer to get another CT scan now but, after we discussed this option with him, it would not change the treatment plan. We would still need to get a PET at 6 cycles, so there is no need to expose Dust to more radiation than needed.  

He told us if the PET came back "no evidence of disease" or normal, he would probably recommend some radiation of the chest as that is where the largest lymph nodes are.

Me being the person I am,  asked him if the PET came back with a slight decrease or progression  of disease what would be the plan.... he siged and said I was trying to pin him down to an answer (uh yea), but he would still probably look at radiation but without looking at the PET he couldn't answer my question.

We were still satisfied with his explanations (actully Dustins exact words were "He blew enough smoke up my a** to keep me happy for now")....I understand he cannot tell us exactly what is going to happen and what the plan is going to be. I understand medicine is a science and not exact blah...blah..blah, I've heard that for years! I just hate being on this side of the table!!! And I'm not even the one with cooties!!!  Being a nurse is not an advantage in this situation, really all it is doing is making me question how I treated patients for the last 15 years!  I held many hands and cried with many patients but I wish I could do it all over again, I would hold their hand longer and maybe cry a little longer, because this really sucks!!!

Anyway........This treatment has gone well so far, he has not been too nauseous, he is just really tired.  Our hotel this time was by the airport, or in the parking lot of the airport!  When we where walking from the truck to check in a plane flew over us and I think I saw the pilot wave at me!!  Dustin almost fell to the ground, I think he thought they were coming to get him....lol  I was afraid if that was going to happen all night it was going to be a very long night, but I guess Tulsa airport is not that busy, we didn't hear another plane until the morning. 

After we checked in we went to the restaurant in the hotel to get something to eat, it was supposed to open at 4, it was now 415, I asked the waitress if they were open and she said they were "looking" for the chef.  Now everything in me said run, but I was already told the closest restaurant was McDonald's and Taco Bell (no way he could eat that) and they were 5 miles away.  We are getting pretty good about getting around in Tulsa, but this is one area we haven't been to.  The waitress came back to us and said "OK, come on in" (mind you she did not say they found the chef!).  So we went in and ordered.  While were waiting for our food, she came back and said "I'm only charging you half because the hotel manager and human resources manager are cooking your food, but don't worry I told them what to put in it"!  OMG, really!!  Again, we should have left then, but being the sporting people we are (not) we stayed and had one of the worst meals we had ever had!!  Oh, well...live and learn.

:-)  Delana

Eyebrows and Food

Just a quick note to let everyone know how he is doing.  This round went OK, he was given a new anti-nausea medication to try.  For 3 pills the co-pay was $80!  I shouldn't complain, if he didn't have insurance it would have been over $550.  He took one pill the day of chemo, then one pill a day for the next 2 days.  He said it really wasn't any different than alternating the Zofran and Phenergan, so we are going back to Zofran.
After the side effects of chemo wore off he was craving Mexican food, we ate it 2 days in a row, I told him he was worse than a pregnant woman.  But at least he was eating.  He was a little disappointed because even though he was hungry and could eat, he still couldn't taste it.  My mom and I have been teasing him that since he can't taste anything it really doesn't matter what he eats so now is the time to try new food!  For those of you that do not know, Dustin is a VERY picky eater!  He is getting frustrated with not being able to taste food, tonight he actually ate some of my sweet and sour pork!  For him that is huge, normally he would never eat that, but I think he was just looking for flavor.

He has finally lost most of his eyebrows and eyelashes.  He has maybe 5 eyebrow hairs left and i tease him that they are mocking me by sticking straight out...I want to pluck them but he won't let me.  He is quite  protective of his remaining eyebrows.  I guess I'll let him keep them for now ;-)

:-)

Chemo

When I think of chemo I have always thought of boiling, steaming concoctions from a witches brew, then once they were hung in an IV bag they would be neon green or yellow.  The first time I saw Dustin's spidey juices, it surprised me at how "normal" they looked.  We have been programed that chemo is so toxic that you wouldn't want to even touch it, I couldn't believe how innocent it appeared.  Logan says he is getting "Pinsol" in his veins, heck even pinsol is an ugly green/brown color. I think they should should be ugly in color to match what they do to the person....just my opinion.

 I took some pictures of his last treatment so everyone could see what his meds looked like.  The whole process takes about 4 hours.  That is from the time we check in to when we leave.  They can not order the chemo from the pharmacy until they actually see that Dust is there, so some times the longest part is waiting for the meds to arrive. Dustin's "cocktail" of medication was the normal treatment for Hodgkin's Lymphoma.  He was on ABVD.  He had a reaction to the "B" part of the cocktail so he is no longer on that one.  Some people can have a reaction to the "Bleo", so it was something we were watching out for.  He said it felt like someone was sitting on his chest when he was getting the "Bleo", so Dr M said, "no more for you!" 

The first picture is of the "A" part of the cocktail or Adriamycin.  It looks like red Kool-Aid.  This is the one that turns everything red for a little while.


Adrimycin

"A" is given by "push", the nurse actually sits there and pushes it into the port.  She doesn't push it fast, so it takes about 10 minutes.

I forgot to mention one of his favorite parts........saline flushes!!!  They have to flush his port before and after each medication, and they do this with saline.  What almost all treatment centers use are prepackaged saline flushes.  These prepackaged flushes have some sort of preservative in them that make them have a metallic like taste during the flush, that is one of the worst parts of the actual chemo treatment.  Dustin was warned about this, so on the first treatment he took jolly ranchers to eat because it worked for someone else....bad idea, I don't think he will ever eat another grape jolly rancher again.  The best thing for him is peppermint candy. 



Two must haves during chemo...water and peppermint candy!!!

The next chemo med after Adriamycin is "V" or Vinblastine, this one is also given as a push.  It also takes about 10 minutes.

Vinblastine

Doesn't that look so innocent.  I think it should at least be neon orange or yellow........ but it's clear...WTH.  Clear doesn't say......."Hey, in 1-2 days I'm gonna make you feel like total dog crap!!"  At least with animals if they are poisonous they usually have some sort of ideifying mark or bright color.....just saying!

The last medication is Dacarvazine, it is given by IV and takes at least an hour to run.

Dacarbazine (and Dustin's beautiful shiny head)

Dacarbazine.....another innocent looking spidey juice.  Believe me they are not so innocent.  By the time the Dacarbazine is hung, his color is gone and the dark circles have returned under his eyes.  He is not the happy, laughing, full of piss and vinegar person he was when we made the 3 hour drive that morning.  So now I take him to the hotel and hopefully can get him to eat before he falls asleep (it is worse if he doesn't eat). 

We will do this until June.  But if that is what it takes to make him whole again....I say....BRING IT ON!!!

:-) Delana

CT Results

Today was the day Dustin and I have been secretly dreading for a few weeks. He received the results of his CT today, this CT was to tell us if the chemo was doing what it was supposed to do. If the CT showed new growth, Dust would have to start a new chemo plan (a stronger and uglier chemo). To be honest I did not sleep at all last night, he finally started snoring around 12:30. The alarm came very early this morning at 4:30. We got to Dr M's office at 8:45 we were both trying not to let the other one know just how nervous we were a out getting the results... I had been telling him for weeks that the results were going to be fine... He said he just wasn't sure. When Dr M came in to see us, I tried to read him as soon as he walked in... He said his usuall hellos and immediately asked Dust how he was feeling and how he was doing. I just knew right then it was bad news. I preparing myself... Telling myself not to cry in the Dr's office! But the he proceeds to tell us that his upper chest lymph nodes have not changed (not bigger but not smaller), his middle chest nodes have showed slight improvement and his abdomen and pelvic lymph nodes also show slight improvement. To be honest I didn't know what to think of this when he read it to us, but he said he was happy with dustins progress. If he is happy we are happy! I know Dustin was disappointed that all of his lymph nodes were not back to normal size, but we have a lot of friends and family praying for him and I know one day soon he will have a normal scan!!

He is resting now, chemo really wipes him out. I ordered his dinner, but he fell asleep before it got here :-(
I'm typing on my phone so be kind with the spelling errors.

:-) Delana

I am really falling down on the job....I really haven't posted in almost a month.  Dustin is doing pretty good, he is getting really tired and his back and hip is hurting more.  He tries to go on "field trips" with me but some times it really wears him out.  Last Wednesday he had a CT to check and see if his current chemo plan is working, we are to get the results this Wednesday.  I would be lying if I said we weren't anxious about those results.  If it shows no new growth and his lymph nodes have shrunk he will stay on his current plan...if it shows new growth he will go on stronger chemo and possibly a stem cell transplant.  We are not ready for that!!!

We received a bill the other day from St Johns Medical Center that took our breath away.  We have been receiving bills for his chemo for $3,700.  The new bill is from pharmacy services for $26,000!  This is for one treatment!!! He is going to have 12-18 treatments.  The $3,700 is just for nursing services!  This is just insane!!

It is pretty boring here, but that is how I like it, that means Dustin is well and feeling pretty good.  I will update the blog Wednesday night, from the hotel with the CT results.  Wish us luck and pray for good results.

:-) Delana