Monday, March 19, 2012

So, I guess Im blogging......

I have been updating Steve's treatments/appointments/etc on Facebook.  I decided to go ahead and start updating via this blog.  I have read several blogs that have been very useful to me.  After thinking about it, I decided that by only posting on Facebook I would not be able to help strangers.  I want our journey to help everyone possible.  

So, to give everyone the back story leading up until today......

Steve works from home.  One day in December 2011 he was working in his office.  He called me into his office and asked me to feel a strange lump he had on his neck.  The lump was directly above his right clavicle.    I immediately played "Google" doctor and found that this was a clavicular lymph node.  I knew our body had a lot of lymph nodes, but I had no idea we had clavicular lymph nodes.  Everything I read about (specifically) a right swollen supraclavicular lymph node pointed to cancer or a very bad infection.  Steve had just gotten over a cold and he chalked it up to that.  After a few days it still had not went down.  At this point Steve kinda started freaking out too.  We decided to go to a local private ER.  They did blood work and a neck Xray and said everything looked fine.  They said if it did not go down in a week to go see an ENT.  After a week, we went to our childrens' ENT.  He referred Steve to a pathologist at St Johns.  We had to wait about a week to get in to that appointment for the biopsy.  The pathologist performed a fine needle biopsy and we waited about 10 days for those results.  We went to the ENT and he gave us the results..... metastatic melanoma.  Needless to say, we were beyond shocked.  We came home and read all of the statistics online and cried.  The average life expectancy for Stage IV metastatic melanoma is 6 - 22 months.  How can this be?  How can a seemingly healthy 34 year old suddenly be dying?  We had to put on our big girl/boy panties and decide to fight this hard.  We were referred to a general oncologist at MD Anderson Clear Lake.  We had to wait about 5 days to get in to that appointment.  The Dr. sent Steve for an MRI and CAT and PET scan at MD Anderson Main Campus.  We were able to get in to that appointment fairly quickly, but then had to wait several more days for the results.  Needless to say there was A LOT of waiting going on.  Finally, in early January we got the results back.  Thankfully the MRI came back clear.  The cancer had not metastasized to his brain.  The bad news, the cancer had metastasized to his lymph node, his adrenal gland, his duodenum, and his lower right lobe.  When the cancer has spread to more than 2 areas inside the body you are automatically considered Stage 4.  The general oncologist then referred us to one of the melanoma specialists at MD Anderson Main Campus for treatment options.  After meeting with Dr. Kevin Kim, we felt a little better about things.  He didn't try to sweet talk us and make us think everything was going to be ok, but he was honest about what was going on, informative about treatment options, and let us know that he was going to try to keep Steve alive long enough to see his daughters get married.  He let us know that he wanted to start Biochemotherapy immediately.  Biochemo is a combination of chemo and immunutherapies.  It is an inpatient treatment which consists of 5 days of treatment in the hospital, 2 days of recovery in the hospital, then 2 weeks home, then back to the hospital for another treatment. 

I started updating on Feb 1st on Facebook.....I am going to copy and paste those updates here and then will update here in the future.

Feb 1st - It's been a long and exhausting last month or so for our family. My husband was diagnosed with Stage 4 Metastatic Malignant Melanoma. The survival rates are very low, but we are staying positive. He will start treatment at MD Anderson late next week or early the following week. I will keep everyone posted on his progress.

Feb 3rd - Stress test, pulmonary function text, EKG, blood work, and pre op visit for next weeks adrenal biopsy.......It's going to be a long day!

Feb 7th - Well, I guess I better head off to bed. We have a long day tomorrow. Steven is having a biopsy on his adrenal gland tomorrow. They have to be sure before he starts treatment that the tumor on his adrenal gland is metastatic melanoma and not some rare incident that he has two types of cancer at one time. If that happened to be the case (they are almost certain that it is not) the treatment would have to be different then what they are lining up now. He has to check in at 10:30 and the biopsy will be at 11:30. They are giving him a twilight cocktail, so he shouldn't feel or remember anything. Luckily, they said that he should not be too sore afterwards. It should just feel like a bruise. I will keep everyone posted as soon as we know more.

Feb 8 - Waiting for the Adrenal Gland biopsy 

Feb 9 - Today's agenda: Meeting with the melanoma oncologist at MDA (finally)! Hopefully we will be able to discuss treatment options. I'm crossing my fingers Steven can start treatment next week. We shall see.....

Feb 9 - Well, what we thought was going to be a short 10am doctor appointment to discuss treatment options turned into another 5 hour day at MDA. When they are ready to get moving, they get moving! We had our 10am appointment with Dr. Kim, he will be admitting Steve on Monday for a 5 day intense treatment. After deciding that, Steve was sent for a chest xray and a consult for a chest catheter and I went to class to learn to take care of the chest catheter once we are home. They require a loved one to take the class twice and then pass a test with in front of one of the nurses. Things are fixing to get really crazy around here! But , I'm so glad he will finally be starting treatment!

Feb 12 - Haven't even began to pack up the kids stuff to spend the week with Grandma ( Regina Goodson Salas ) and still gotta get Stevenand I packed. I just can't get motivated, and packing for four for a week is sooooo overwhelming. Oh well, guess I better quit procrastinating (but hey, that's my middle name!!).

Feb 13 - All settled in....


Feb 14 - Official chemo start time 12:00 am 2/14/2012. We have such an awesome nurse! Too bad she gets off at 7am and doesnt come back until Saturday....booo! She did say she was going to try and pick up a shift tomorrow night. Hopefully she does, she is really great!

Feb 14 - UPDATE: Well, since we were woke up so Steve could be weighed and they could change out his bags, I thought I would give a quick update before I try to sleep a couple more hours before shift change. The first chemo was started at midnight. 5 hours later he has had all 3 chemo doses and was just started on the 2 immunotherapys. He is feeling fine so far. No symptoms at all other than being sleepy. (We have only had about 2-3 hours of the sleep though!) The 2 immunotherapy's actually have more side effects than the chemos. They expect within the next 2 hours he will start to run a low grade fever and start having chills. They have started him on Tylenol to preemptively get a head start on the fever, and once he starts having chills they will give him a small dose of Demerol. Thanks again everyone for thinking about us! — with Steven Martin.

Feb 14 - The food here is actually very good. Here is the special Valentines menu for tonight. Too bad my hubby feels miserable now, because he would have enjoyed this menu any other time :( Wish I could take it all away. — with Steven Martin.


Feb 14 - Bad Boy For Life.....Haha!


Feb 14 - UPDATE: Well day 2 of treatment is officially underway. Overall today was a good day for Steven. He has been sleeping most of the day. Around 10am he got a bad case of the chills. He was given demerol and the chills stopped and he went straight to sleep. Same thing happened at 11:30, more demerol and straight to sleep. Then he had some nausea around 12:30. They gave him some meds and again he was back to sleep. We ate lunch around 1:30. Steven ate a banana, a slice of cheesecake and some hummus and pita chips. The dietitian said for him to eat anything he could keep down. We have been doing a very low sugar diet because we have read that sugar feeds cancer. When discussing that with her, she explained that every food you eat, protein, veggies, carbs, fats, etc ALL break down to a simple sugar and especially during treatment your cells need the simple sugars for energy. So, although it is better to eat healthier foods because you get vitamins, antioxidants, etc it is definitely ok to eat sugar. Steven was in heaven when he ate the cheesecake since he hasnt had anything sweet in @ 6 weeks. After lunch he slept some more. He woke up @ 2pm and was feeling good and wanted to go walk around the nursing station. We are supposed to do this several times a day to prevent blood clots and pneumonia. He was feeling so good that I went ahead and picked up the kids from daycare, gave them their Valentine's presents, visited with them a bit, showered and came back up. We shared the special Valentine's dinner for tonight. So, overall day 1 went much better than we expected. Let's keep our fingers crossed that day 2 goes just as good!

Feb 15 - UPDATE: Well, we are about 8 hours away from being done with day 2. They moved up the start time on Steven's treatment from midnight to 8 pm so we would be on a little more sleep friendly schedule. He received 2 chemos and 2 immunotherapies @ 8pm last night. He had no real bad side effects....no chills this time around (yay!!!). We were both able to sleep through the night for the most part. They come in every couple of hours to check his vitals. He was running low grade fever and had to take some Tylenol (which is normal) and for some reason they weigh him at about 4:30 am? Im always too asleep to ask why they weigh in the middle of the night and then forget to ask while Im awake. Anyhow, the night was very uneventful and we both got rest. We got up @ 7:30 am. Steve watched a little TV, ate a little breakfast, and went walking around the nursing station. After the walk he was exhausted again and has been sleeping on and off most of the day with no real complaints other than extreme fatigue. I had to demo the CVC dressing change, cap change, and flush. (I passed...woo hoo!) The demo took about 10 minutes and I think it woke Steve up a little. He has been awake for about an hour and is now playing games on his Ipad, watching TV, and waiting for lunch to be delivered. They have a very good selection of food and he can order anything at anytime all day long. For lunch he chose a Reuben sandwich, tapioca pudding and a diet soda. I will post again this evening and let you all know how the rest of the day goes.

Feb 16 - UPDATE: Nothing very eventful to update about. I think my last update was right around lunch time yesterday. Steven was able to eat his lunch pretty well. He ate half off his sandwich and half of his pudding. He had enough energy to take another walk around the nursing station. We actually went down an extra hallway too! I try to push the walking whenever he is already up after going to the bathroom or something. We don't want any pneumonia or blood clots! He also is supposed to do the breathing exerciser (incentive spirometer?) 10 times an hour for every hour that he is awake to also help prevent pneumonia. They said that most patients gain about 25-40 pounds while in here due to all of the fluids. All of the extra fluid could cause pneumonia and trouble breathing. So far he has only gained @5-6 pounds and he is able to get the breathing exerciser to the top still every time. So, so far so good in that department. Most of the day consisted of Steven sleeping. They have free on demand movies in the room. He spent 30 minutes looking for a movie, found one he liked, and was asleep within 5 minutes of it starting :) Later in the evening he woke up and was awake for probably a good hour to hour and a half. That was nice. I don't usually get long periods that he is awake. Every medicine's side effect is fatigue and he is pretty much always sleeping. He didn't have much of an appetite for dinner. He is really starting to get that feeling like he has the flu (body aches, low grade fever, nausea). I think he had part of a cookie for dinner. They started his 3rd round of chemo/immunotherapies (they call this combo 'biochemo') @8pm. He went to sleep around 11pm and I went to sleep around midnight. We both slept pretty soundly through the night (he is still sleeping). They came in through the night to do vitals, weigh him, take blood, give meds, etc but he was able to go right back to sleep and I was able to go right back to sleep too. Tonight he will get 2 chemos/2 immunotherapy drugs starting again @ 8pm and then on Friday he only gets 1 immunotherapy drug. Then we will have 2 days of recovery before we go home for 2 weeks. It's crazy how fast the time has flown by. You would think sitting in a hospital room 24/7 for a week, time would just drag by, but it's going by so quickly. Steven was really worried before his treatment last night. He said he had a bad feeling that this would be the day he really started feeling bad, but so far so good! He has been such a trooper!

Feb 16 - Although this link is from a different hospital, I thought it was a good explanation of the treatment Steven is getting. Survival rates for metastatic melanoma are grim in general. With this treatment (biochemotherapy), there is a significant increase in response rates. It's going to be a long, hard battle and I have no doubt Steve will give it all he's got!! 
http://www.cpmc.org/services/cancer/erick_davis_il2.html

Feb 16 - UPDATE: Well, I updated around 9 or so this morning, and not much has happened since then. Steven felt really bad all day today. He woke up and ate his breakfast (half of some greek yogurt, half a piece of banana nut bread and some juice). After breakfast we went for a walk around the nursing station. Once we got back, he was OUT! He has literally slept allllllllll day. The few times he woke up he just went to the restroom and then went right back to sleep. Each time he would mention how miserable he feels. He is extremely fatigued, fever got up to 101.1, achy, nauseated, etc. Around 8pm he finally started waking up.....just in time for the nurse to come in and start Day 4 of the biochemo regimen. I took advantage of him being awake and made him drink some water, walk around the nursing station again, and he just ordered some dinner. Now he is hanging out in his bed, wide awake, watching tv and waiting for his food to come. I sure love seeing him up and feeling decent. We are almost finished!! Tomorrow night he will only get Interferon (an immunotherapy) and no other drugs. Then he will recover Saturday and Sunday. So, so, so glad this is almost over, I sure hate seeing him completely worn out. Thanks again to everyone for the prayers, thoughts, cards, messages, texts, offers, etc. We are so thankful!

Feb 17 - 
UPDATE: It's so crazy the waves of good and bad that Steven has. He had a really rough night. He was feeling miserable, barely drinking any fluids, started having more nausea than usual, started having loose bowels in the middle of the night, monitors kept going off like crazy last night. They gave him meds for his stomach issues and he slept pretty good through the night. He woke up this morning feeling like he needed to eat, but was still having a lot of stomach pain. They gave him more meds and he was able to eat a little. After breakfast he went back to sleep for about an hour, until Dr. Hey, the melanoma doctor came by making his rounds. Steve had a few questions and we chatted with the doctor for about 10th minutes. He seemed to be feeling ok after the doctor left the room and wanted to sit in a chair and maybe look at some work. He was sitting there about 5 minutes and asked me to take his laptop from him. When I walked over to take his laptop, his forehead was beaded in sweat and his eyes were rolling in the back of his head. He kept saying he felt weird and he was drenched in sweat by this time. I called for the nurse, we got him back in bed and she took his vitals. His blood pressure was 91/56 which is probably what caused this episode. They have him on oxygen now and will check his blood pressure again in one hour. If it drops any lower they will start him on some meds. She also reminded him how important it is to drink a lot of fluids because he is probably also dehydrated now on a cellular level. I took the attached pic literally seconds before this happened.
 — with Steven Martin.

Feb 18 - UPDATE: Well, we are officially done with the Biochemo (yay!!). We are officially on recovery Day 1. After Steven's scary low blood pressure episode yesterday everything went pretty decent. Overall he was feeling bad, he kept getting low grade fevers which would give him the chills, he also kept needing nausea meds. They had changed his nausea med to one that didnt make him so drowsy so even though he was feeling bad, he was awake most of the day. He went to sleep for the night around 10 pm. I went to sleep for the night around midnight. He was having a rough night and between him waking up and nurses/techs coming in and out, we got very little sleep. Steven woke me up at 7:30 and asked if we could order breakfast. It was one of the first times he asked to eat and I didnt ask him to try and eat, so I was happy thinking he may be getting his appetite back. He ate 1 bite of yogurt and 1 bite of banana nut bread and called it quits. Oh, well, something is better than nothing! I went back to sleep and was actually able to sleep pretty uninterrupted until 11:30. The nurse came in and let us know that they usually give you neutrophil (white blood cells) on day 7 but since we started at such an awkward time on day 1 (midnight!!) he will be getting the neutrophil today. Based on his lab work from last night, he is also getting calcium and potassium today as they were both low. After I woke up at 11:30 he asked if we could order lunch. I think he has high hopes for lunch. He ordered chicken stuffed with crab, carrots, mac n cheese, and a roll. He also ordered a yogurt parfait, a macadamia nut cookie, and a coke zero. (ummm yeah, he can't eat all of that!! Not even 1/4 of that!! Looks like I will be eating some leftovers!) The nurse encouraged him to get up and walk around a lot today as that will help all of the fluid retention (which he actually hasn't had too much) break up and move around. We typically get 1 walk in per day. Im going to try and get him up and around at least twice but maybe even 3 times today. We are also hoping to get him a shower after lunch or at some point today. He hasnt had enough energy to have a shower, and he has to have a shower with a nurses assistance since he still has fluids going in through his CVC and needs to protect his CVC. Anyhow....here's to a good day hopefully!

Feb 19 - UPDATE: Well we are on Day 2 of recovery and everything is moving along pretty well. Steven got up and walked the halls 3 times yesterday and was sure to drink plenty of fluids. He ate half of a burger for dinner which is the most he has eaten since we got here. I think he was paying for it later though. Around 6pm he was very nauseous and had to have some nausea meds. He also had a lot of back, shoulder, arm pain. He already has chronic back pain and I think sitting in the same spot in the same bed for a week finally caught up to him. So, he got some pain meds and went to sleep by 10pm. But overall the day was good. We got up this morning around 8:30. The nurse let us know that his blood work from last night showed his calcium is still low, so he has to have a 4 hour calcium drip before we can go home. We are still waiting on the pharmacy to send that up. So, hopefully sometime between 2 and 4 we will be on our way outta here!!! Steven seems to be feeling pretty good this morning. He is moving around better and with little to no assistance. He is in bed watching TV and overall seems to be feeling even better than yesterday. We are just hanging out waiting for breakfast to be sent up (cheerios and milk for all those interested...haha). Once we get out of here we will stop by the house and unload our stuff and then head to moms to pack up the kiddos stuff and bring our babies home (yay!!). On our 2 weeks home before the next cycle, Steven will have to have his blood drawn twice a week to check to make sure nothing is too low, he doesnt need fluids, no signs of infections, etc. The doctors said that he should be able to resume most normal activities. They said that he will have a few good days and then have a drop in white blood cells which may make him feel a little worse for a couple of days, but then they will peak back up and he will start feeling better again. Overall, I think the week was better than we both thought it would be. We know that each round will get tougher and tougher as his body will get weaker and weaker. Hopefully after the next treatment and he is able to get the new PET scans, we will see results. I know if he SEES that it is working it will give him that much more motivation for the remaining sessions. Thanks again to everyone for checking on us, praying for us, messaging us, offering your money, your homes, your food, your time, etc. We appreciate all of our friends and family!!!

Feb 19 - We are HOME!! Got the kiddos from moms, and got home around 5:30. Steve is still feeling really weak and is laying in bed. Im trying to clean up this house. It's amazing, when I left it was clean, but between cats puking everywhere (gross, I know?!?!!!!!) and all of our luggage and the kids luggage the house is a wreck. Oh well, one room at a time! Sneaking off to CVS to do some coupon shopping after Ashlynn goes to bed tonight!

Feb 20 - Well as much as I am glad to be home to see the girls, I almost wish we were still at the hospital. Ashlynn woke up at 1:00 (I think she is having ear issues AGAIN, and the ENT appears to be closed today), I got her back to sleep at 3. I went to get back in bed and Steven was tossing and turning and said he hadn't been able to sleep. I came back out on the couch so I could get some sleep before I had to get up and take the girls to daycare. I came back home from dropping off the girls and he still had not fallen asleep. We have tried everything to get him to be able to sleep and he still can't. He has tried every bed in the house, showered, taken Benadryl, listened to relaxing music, etc. NOTHING is working. So, now he is getting anxious and freaking himself out. I just called and spoke with his doctors nurse. She is going to talk to the doctor and call me back. They will either call him in something for anxiety or a sleep aid. I think this has actually been worse than any day/night that he was in the hospital. I know it will get better, I just need him to get some sleep!!!

Feb 20 - Got Steven home from the ER. He was definitely having anxiety issues. Either no sleep caused anxiety, or the anxiety cause insomnia. Regardless, they gave him some antianxiety meds and he is finally sleeping (after 24 hours of no sleep!!). As I was typing this message the discharge nurse from MDA called to check in. I explained what happened over the last 24 hours and she explained that some patients although rarely experience anxiety as a side effect of the IL-2. Most people experience nausea and vomiting as a side effect of IL-2 but some patients experience a little more rare side effects such as insomnia or anxiety or both. I guess Steve won the insomnia/anxiety lotto.

Feb 23 - UPDATE: Well, Steven had a pretty rough start to his recovery at home. Sunday he was feeling extremely fatigued but could not sleep at all. He did not sleep for over 24 hours. Monday the insomnia/fatigue caught up to him and he started having anxiety issues. We went to the ER, they gave him some anti-anxiety medicine and he came home and was finally able to sleep. The sleep didnt really stop after that. He slept about 95% of Mon, Tue, Wed. He would get up for 5-10 minutes here and there and then go right back to sleep for hours. We had to go to MDA Clear Lake to have blood drawn on Tuesday and they called back and let us know that everything was where it should be. White blood cell counts were extremely low, and platelets really low, but none the less were where they should be. The other problem he was having is EXTREME itching. One of the side effects of IL-2 is extreme dry skin and itching. I think the itching bothers him more than anything else at this point. Finally today he was almost back to "normal" Steve :) He slept in a little, but then was up the ENTIRE day. He did some work, fixed a few problems at work, ate better today, the itching is less intense today, etc. We even had a friend James M. Harrison stop by for a little bit. I am soooooo happy! It is so nice to have my hubby back, even 80% of my husband back! Everyday he should feel better and better. By March 5th (his next treatment date) he should be back to almost 100% if not 100%. If he stays felling as "good" as he is today (and possibly better) he will have 10 "good" days before we start all over. That makes me happy.

Feb 28 - Someone help me! Heading to have Steves blood drawn and he decided he wants to drive. He hasn't driven in weeks.... I've only had whiplash twice! — with Steven Martin.

Feb 28 - Ashlynn hanging out with Daddy, watching Barney and having a "nack" after her bath :) — with Steven Martin.

Mar 5 - All settled in, just waiting on the drugs to get here. Looks like it may be another "start biochemo at midnight" kind of night. — withSteven Martin.

Mar 6 - UPDATE: So, the drugs started flowing around 10:15 pm. We had a relatively quiet night. Around 5:45 Steven started having chills.....crazy, hard, chilled to the bone chills. The nurse came in within seconds and gave him Demerol. That Demerol is crazy magic! Within seconds of administering it, he stopped shaking. He immediately fell asleep. A few minutes later he woke up, told me he loved me and apologized for waking me. I let him know I can sleep all day whenever I want and it's no big deal. Then he asked me how his haircut looks. I said "good". Then he asked "even when I had the chills?" I was thinking he knew what he was saying and was just trying to be funny. I said, "yes, even when you had the chills.....you never made chillin' look so good" Then he said "I wish we used that green stroller more....it's an awesome stroller." LOL.....ummm, ok so I guess it was the Demerol talking.

Mar 6 - UPDATE: Well, no news is good news, huh? Day 1 is almost complete. Not much to update. Steven had the one spell of chills this morning. During his last treatment he got the chills twice, so he was lucky this time around to only have the one spell. About 9:30 he was up for a short period of time. He ate some breakfast (a bowl of Lucky Charms for all of those keeping score....lol). After breakfast he went to sleep and slept hard all day. I was still feeling really exhausted and slept after breakfast until around noon! I had 2 nights before getting here of only getting 4 1/2 hours of sleep and then was woken up through the night while nurses were administering drugs, getting vitals, etc and then woke up at 5:45 am when Steve got the chills. So, I was still realllly tired. I finally made myself get up. Steve was still sleeping. I showered and tried to make myself somewhat presentable (I guess for the nurse, and tech considering those are the only 2 people I have seen today...haha). Around 2:30 I ordered us some lunch. I couldn't wake Steve up enough for him to choose what he wanted, so I just ordered him several different things that I knew he liked from last time and figured he could just eat what he wanted when it got here. Once lunch got here, he ate a couple of bites of his sandwich and ate all of his cheesecake and then went back to sleep. He is still sleeping. His vitals have been good all day. When they last took his vitals around 7pm he had a fever of 101.8. They had already given him Tylenol at 6pm (he gets it regularly every 4 hours regardless if he is running fever at the time or not) so, unless his temp goes up higher, he will not get any more Tylenol until around 10pm. Its kind of a boring night/day. I did finish a book, play some WWF, and HWF. I think I may play some online poker tonight. That should keep me entertained!

Mar 6 - Hey, look who is awake! He must have heard me typing about him ;) — with Steven Martin.
Mar 7 - Here is a side by side photo of my arm and Steves arm. One of the drugs they give him ( Interleukin-2) gives him a red, fiery sun burn like rash. It then itches like crazy. It will keep him awake sometimes itching so bad. After the treatment, the redness will fade away and his skin will stay extremely dry, and itchy and even peel. — with Steven Martin.
Mar 7 - UPDATE: Well, it was a so-so night. Steven ended up getting chills again around 1am. After a little Demerol, he was fine and we went back to sleep. Around 2 am, they came in to take his vitals, around 3 am they came in to switch out his Interleukin-2 bag, around 4 am they came in to give him Tylenol and around 5 am they came in to draw his blood. So, sleep was hard to come by last night. We both woke up again when they came in around 7am to do shift change. Steve slept on and off until breakfast got here. He ate a bowl of honey nut cheerios and a few bites of a cream cheese danish. After breakfast, it was back to sleep for Steve. @11am-ish we got a visit from a friend of ours, Joshua Posey. (Thanks, Josh!!) Steve was able to stay awake through the entire visit and seemed to be feeling pretty good. He is watching TV now, so Im sure it wont be too long and he will be back to sleep, which is good, he needs to get his rest. Steve's Uncle Tim is supposed to come in sometime today from Shreveport/Bossier City. I know he is looking forward to that!

mar 8 - Sigh.........ok after writing my longest update ever and then having my computer die, Im slightly annoyed. So, this may turn into the shortest update ever! Ha! Ok, so Steven has had a pretty rough day. He has been sleeping allllllll day. He has been feeling nauseated, having body aches and pains, and just cant seem to wake up. He did wake up this morning and have a little breakfast and get in a shower. But, he went right back to sleep after that. I woke him up this afternoon to see if he wanted any lunch and he said no. This is the first time including the first treatment cycle that he skipped a meal (even if his meals only consist of a couple of bites). When I woke him up, he was really anxious and really concerned about all of his aches, pains, fatigue, etc. I looked back at my Facebook from Feb. 16th which was the same day of the cycle as today. I read it to him. This was part of it "He has literally slept allllllllll day. The few times he woke up he just went to the restroom and then went right back to sleep. Each time he would mention how miserable he feels. He is extremely fatigued, fever got up to 101.1, achy, nauseated, etc." Sound familiar? Once he heard that, his anxiety went down....and he went back to sleep!!! Around 4pm he woke up for a bit. We got in a walk around the nurses station and made it back to the room in time to talk to Dr. Papa who is on duty for rounds this week. Dr. Papa said everything is looking good. Steves WBC counts are a little lower than they would like, so they are holding tonights dose of Interferon (immunotherapy). After Dr. Papa left, his assistant, Michelle stuck around to chit chat. She was answering all of our random questions we could think of regarding melanoma. During our conversation, I remembered to ask her about a test Steve had a few weeks ago and asked her if she knew when the results would be back. She was nice enough to run and check and came back with the results. Steve tested positive for the BRAF mutation! This is good news! There are some brand new drugs that can only be used on patients with the BRAF mutation. There are also some clinical trials for a vaccine for patients with the BRAF mutation. This gives us lots of back up options if the standard treatments do not work. If you do not have the BRAF mutation, you are basically stuck with standard treatments only and do not have any back up plans. The drugs for the BRAF mutation only slow down the cancer but rarely cure the cancer, so standard treatments are always used first since those are targeted to try and cure the cancer. But for example, if this protocol he is currently on did not work, he could take the Zelboraf which would slow down the spreading while looking into the next standard protocol. He could also do the clinical trial of the vaccine. It is in stage 3 ( I believe ) which means it is almost ready to be submitted to the FDA for approval. We also found out he will have his CAT scans on Sunday, March 25th, the day before he starts his next round of treatment. So, hopefully when we meet with the doctor on Monday, March 26th before admittance, he will have the results and will be able to let us know how this treatment is going. After Michelle left the room, he went back to sleep. He asked for anti-nausea meds 2 hours ago and it just got here. His nurse said she ordered it from the pharmacy and onoe of the other nurses must have stole it for their patient. Umm, it has his name and medical ID # on the bag, so somehow I doubt that! This is the first day we have had a bad nurse. Everyone else has been so great, but she is just not a good nurse. She actually sat some medicine on his bed tray at 8am and told him to remember to take it at 9:30 am. Crazy. Our night nurse just got on duty and he is our same night nurse from last night. We liked him a lot, so we are back in good hands!

Mar 9 - For those of you wanting to join me in the Aim at Melanoma Fundraiser Walk, you must go to the webpage to register. 

The link for the Houston walk ishttp://www.aimatmelanoma.org/en/aim-for-action/1158/1159/houston-2012.html

and the link for the Galveston walk ishttp://www.aimatmelanoma.org/en/aim-for-action/1158/1159/galveston-2012.html

Once you click the link, click on "Register" it is free to register. If you register by October 15th for the Houston and April 1st for the Galveston walk, you will get a free Tshirt. They are asking (although NOT required to walk) that all participants try to raise a minimum of $50. That will help cover the cost of the walk and also money to research this horrible disease! You can donate the money yourself, create a fundraising page and post to your Facebook page, get donations from friends/family/work, etc.

Also keep in mind that many companies will match employee donations. So, if your company does this and you make a donation, don't forget to ask your company to match the donation! I can give you the address to mail checks if you would rather mail a check than donate online and/or if your company needs to donate by check.

Thank you all! Steven and I appreciate it soooo much! Love you guys!

Remember if you can't or would rather not participate in the walk, you can always go to my fundraising page and make a donation.

Mar 9 9- UPDATE: Today has been a so-so kind of day. Steven was feeling ok the first part of the day, but has felt pretty bad most of the day. He has been awake most of the day though. So, even though he isn't feeling well, it's nice to visit with him. We decided to take a walk a few minutes ago to see if it would make him feel any better. Right as we were passing one of the rooms, there was sudden burst of commotion. Someone was on the floor in their room/bathroom. (I'm assuming it was something cardiac related. The treatments for melanoma have a very high risk of cardiac episodes.) Then the code blue lights started going off. A team of 10-15 medical personnel came flooding out of the elevator. A relative (Im assuming) of the patient's was crying hysterically and went into the patient kitchen area. Very scary. After about 10 minutes of the medical personnel in their room, I saw them wheel her away in her bed. Im hoping they were able to stabilize her and were just moving her to ICU. I asked Steve if the walk made him feel better. He kind of just stared at me. I said "I mean, physically did it make you feel better?" He said "Yes, but I need a Xanax." Seeing things like that definitely put all of this into prospective.

Mar 11 - UPDATE: Sorry I didn't update yesterday. I was feeling lazy.Steven had a so-so day. It was Day 1 of "recovery". Like last time, "recovery" consists of all of the random aches and pains really kicking in. He was having a lot of upper body pains in his shoulders, arm, chest, etc. He was also having some pain in one of his legs too. He stayed on pain meds most of the day. Overall, he just felt blah all day mixed with a lot of pain. Our friendsCheris and Steven stopped by to visit for a bit on their way to their 1 year anniversary dinner. That was nice! (Congrats guys, we love you!) Steve was having a hard time falling asleep last night since he had slept a lot during the day, and he was having a bit of anxiety, so he got some Ativan @ 1:30am and then was able to sleep until the morning. The nurse was nice enough to tell the tech to hold off on taking all of his vitals until the morning so we could have some uninterrupted sleep. Once he is off the meds, they are not required to take his vitals through the night. (yay!) We did have a few interruptions. Steven was laying wrong on one of his lines and that made the machine go off, and they came in @ 4:30 or so to draw blood and take his weight. But that is very minimal interruptions considering how many we usually have. My back is killing me! Good thing we go home today. My back doesn't think it could take another night in the chair/bed. I can't wait to sleep in MY bed tonight! And I suuuuure can't wait to see my 2 little monkeys! We miss them soooo much! Thank you mom (Regina Goodson Salas) for keeping them for us. I love you! Steven is still trying to catch some ZZzzz's. They have hung a few maintenance drugs on the pump, so between waiting on those to drip, waiting for the infusion therapy team to come take out his picc line, waiting on discharge papers, etc, it will still probably be several hours until we our able to leave. 

Also, if you haven't already, please "like" this link. We are hoping to get enough attention from Ellen for a donation to Aim at Melanoma a non profit organization that raises money for Melanoma research. Melanoma is one of the deadliest cancers and needs more awareness. When most people hear melanoma, they just think it is a type of skin cancer and can just be cut off of your body. WRONG! A large percentage of metastatic melanoma patients never present with a primary (mole, wart, growth on their body, etc.). More awareness is needed, and more funding is needed for research. Please "like" the link below:

https://www.facebook.com/photo.php?fbid=3229029840103&set=o.26012002239&type=1
Hi Ellen. I wanted to ask a favor of you. I am a HUGE fan of yours and my 10 year old just LOVES Sophia Grace! We do not miss an episode. I find myself in a time of need. My 34 year old husband was diagnosed with metastatic melanoma on 1/3/12. The survival rates of this disease are very grim (6-22 months). He is currently receiving treatment at MD Anderson in Houston. We are lucky enough to have the best cancer hospital basically in our backyard. I am not asking for a handout, but I am asking for a donation to Aim at Melanoma. I am doing 2 walks, one in Galveston and one in Houston, to raise money for Melanoma research. There are several clinical trials that are in late stages and are close to being submitted to the FDA for approval. I am hoping that NO ONE has to go through this awful disease as it is one of the most deadliest cancers and there is currently no effective cure. We have 2 young children, ages 20 months and 10 years old.

Here is a link to my fundraiser page:http://www.aimatmelanoma.org/en/aim-for-action/1158/1159/galveston-2012/4758.html

If you are unable to donate online, please consider contacting me for more information on how to donate via check. Thank you so much Ellen!!! We love you!!!

Mar 11 - 
Ashlynn was shy of daddy when he shaved off his hair. It made his day when she brought her book for them to read together. I told him it wouldn't take long, just an adjustment. ♥ — withSteven Martin.
Mar 15 - UPDATE: I have had a lot of friends messaging me to check onSteven. Thank you all! We appreciate all of your concern!!! I'm sorry I have not updated much since we have been home. With spring break, and keeping Sadie entertained, I have been staying pretty busy around here. Steve was in bed about 98% of the time Sun, Mon, Tue and then on Wed he started feeling a bit better. He was up out of bed most of the day and watching a little TV but still feeling fatigued and having some aches and pains. Today wasn't too different. He did have to go have blood drawn this morning. His WBC count is still very low. He still can not go out in public or be in contact with anyone that is sick. Even though his numbers are all low, they are pretty much where they are supposed to be. I'm hoping that he will feel even better tomorrow and we can enjoy a nice weekend (at home). That's about all that is going on around here. Staying home, staying away from sickies, resting, etc. 

Thank you all for your prayers, cards, messages, phone calls, texts, gifts, donations to AIM at Melanoma, etc.

P.S. If you would like to sponsor me in the AIM at Melanoma Walk for Melanoma awareness and research, please do so herehttp://www.aimatmelanoma.org/en/aim-for-action/1158/1159/houston-2012/4757.html



3 comments:

  1. Jen, u r amazing...yal r in my thoughts and prayers. i wish nothing but the best for u and ur family. I hate to know what yal r going through. Be strong but dont be afraid to break every now and then....hugs ur way! I also just went back to work at tx oncology and i plan on speaking with my dr to see if she has any suggestions for his treatment that u may be able to ask about....she is an amazing dr!! All of our drs are awesome and I know they would love to help! Good luck I will email u with any available info

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