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
Wednesday, February 22, 2012
Wednesday, February 15, 2012
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
:-) Delana
Thursday, February 9, 2012
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
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
Friday, February 3, 2012
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 ;-)
:-)
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 ;-)
:-)
Friday, January 27, 2012
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.
"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.
The next chemo med after Adriamycin is "V" or Vinblastine, this one is also given as a push. It also takes about 10 minutes.
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.....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
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 |
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!!! |
 |
| Vinblastine |
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) |
We will do this until June. But if that is what it takes to make him whole again....I say....BRING IT ON!!!
:-) Delana
Wednesday, January 11, 2012
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
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
Sunday, January 8, 2012
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
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
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