It seems like we have good ups and then some bad downs with this disease. Today, Tyler tried vanilla pudding for breakfast and ate the whole thing without any problems. He says it tasted delicious on his tongue, so it was a good place to start. We were both thrilled with his progress and trying to figure out what he should try to eat next.
Then we met with our doctors here and they raised some concerns about a numbness that Tyler has been feeling in his foot since Wednesday. The numbness itself wasn't entirely concerning, but the fact that Tyler has lost ability to pull his toes up on the left side is concerning. Tyler is a strong man, with good muscle tone, so he should be able to exert some pressure against a hand that is pushing his foot down (imagine pulling your foot up in the opposite direction you would use on your gas pedal -- heel on the floor, pulling your toes up). Unfortunately, that wasn't happening today.
The doctors said that they don't know what has caused this, so they want a neurologist to take a look and help determine the root cause of this problem. They say the numbness/nerve damage could be caused by the radiation, or it could be caused by the leukemia itself. They will take what they learn from the neurologist and from the Brain MRI (we hope both are happening today) and try to figure out why Tyler's disease is such a challenge.
We are discouraged because the doctor said that it is possible that Tyler's CML is so resistant to all of the nasty things they have thrown at it, that we might not be able to get Tyler eligible for ANY transplant. I have come to believe that this is Tyler's best hope, so it is heart wrenching to hear we might not be able to travel this path.
In addition, the doctor says that Ty really needs to start taking his Tasigna again, as they are already seeing blasts (leukemia cells) in his blood tests.
In the meantime, I try to remain hopeful that we will find a cure that works for Tyler and that his spirits don't drag too low in light of the news we got today. All in all, it isn't the birthday I was hoping he would have today.
Friday, October 31, 2008
It seems like we have good ups and then some bad downs with this disease. Today, Tyler tried vanilla pudding for breakfast and ate the whole thing without any problems. He says it tasted delicious on his tongue, so it was a good place to start. We were both thrilled with his progress and trying to figure out what he should try to eat next.
Now that Tyler is feeling better, he's up checking e-mails and fantasy stats. It gives us both peace of mind to see him back to normal activities. He's out walking the halls again now. His goal is to walk a mile today, and he looks like he is going to make it. We walked this morning at about 5am, after one of our wakeup calls, so he got 3 laps in then.
You might notice that he looks slightly different today. Scott shaved the rest of Tyler's head, so that we don't have to deal with so many little pieces of hair everywhere. We were getting tired of changing pillowcases every couple of hours to protect Ty from breathing in the little pieces. It doesn't look too bad, does it?
We look out our window at a rainy northwest day and hope that you are all enjoying Halloween with costumes and candy!
Sorry for not posting yesterday, but it was a really busy day. Tyler woke up feeling significantly improved. His energy was up again, he barely used the morphine at all (1 pump all morning), and his voice was back. He was so relieved that the Ear, Nose, and Throat guys had taken a look at his airway and confirmed that he had a good clear breathing passage, although they saw lots of inflammation and lots of mucous clogging things up for his swallowing. The steroids they prescribed reduced the swelling in his throat and Tyler was finally anticipating swallowing real food again.
Since he awoke feeling so good, we allowed a few visitors to come in and say hi. He has to be careful still to not talk to much and to keep his mouth and throat moist, but all in all, it was a great day.
He was finally feeling good enough to get up and walk around the hallways, which is an important part of being inpatient. I even saw him practicing "the move" as he walked around the halls. I guess he doesn't want to lose his biggest weapon on the soccer field.
One of our goals for yesterday was to attempt swallowing again. The doctors tell us that thin liquids are actually harder to swallow than thick liquids, so they got us a jello cup to start with. Tyler was able to swallow the jello (8 times), but wasn't able to get the jello all of the way down. It ended up getting lodged in his throat halfway down and then coughed back up. It hurt quite a bit, so we called it good for day 1 of swallowing and plan to try again Friday.
When we met with the doctors, they told us that Tyler's transplant has been pushed back about a week with the delay in the repeated lumbar puncture. We estimate his new transplant date is 12/2. We expect to be at the hospital through Monday's LP, unless Tyler is swallowing nutrition and medicines again. He's been off his Tasigna for a few days, so we need to get him back to that medicine again soon.
Thank you all so much for encouragement while we were struggling earlier in the week. It helps us so much to have e-mails and comments from loved ones.
Wednesday, October 29, 2008
The plan that they have created (since the transplant can not yet proceed) is to have a Brain MRI for Tyler and then another Lumbar Puncture on Monday. The LP is to measure whether or not the cells they saw this week were just the last onery cells dying off. The brain MRI is to investigate WHY none of the treatments have worked yet. Tyler has had several rounds of chemo to his spinal fluid and a heavy dose of radiation that all should have killed off every speck of leukemia. The doctor says they will be looking for a "leukemia lump" in his brain somewhere. I didn't know that leukemia could form a solid tumor, but that sounds like what they are looking for.
All of this makes me wish that we had caught Tyler's leukemia much earlier and maybe had more success as fighting the dang disease!
In the meantime, the doctor expects that we will have several boring days at UW just waiting for tests and for healing. Dr Turtle did mention that Tyler's White Blood Cell count had gone up this morning, so the doctor thinks that Ty's body will start to recover now. It would be a blessing to have his throat return to normal. I bought Tyler a 36-pack of Mountain Dew for his birthday and it would be a crime for me to drink it all without him.
He is swallowing NOTHING these days, so he is unable to take his Tasigna. The doctor thinks that will be okay, but I get worried when they talk about his WBC climbing up and I know Tyler is not on his leukemia meds. It does give me peace of mind to know they are watching him so closely while he is in the hospital. If we had experienced the not-breathing episode last night, I would have been beside myself trying to figure out what to do. It took me long enough to find the nurse's call button as it was....
I'm back to spend the night with Tyler again. It's an interesting way to try to get rest. They wake us up every 4 hours to take vitals. I know that is important, but I weigh that against the importance of sleep. Maybe I should take ear plugs tonight??
The doctor came in this morning and let us know that the LP results were in. Sadly, they still had signs of leukemia in Tyler's CSF. It was only 0.1% (compared to 16.5% before radiation), but it doesn't meet our goal of completely clear.
The doctors are meeting today to determine what steps we take next. At this point, I would assume the transplant is on hold. He is probably going to end up going through another round of radiation and we were really hoping to avoid that.
We are both very discouraged at the news, but will surely start feeling a little better once we have a new plan in place.
We had a scary moment this morning, as Tyler found himself unable to breathe due to all of the gunk in his throat. It happened about 4:30 this morning, just after his 4am vitals check. He was trying to cough up some of the throat secretions that he has accumulating in his mouth and esophagus, but he just couldn't clear out his throat and he was causing a great deal of pain trying to.
After 5-10 minutes of trying to clear his throat he all of a sudden got much more agitated and asked me to hit his nurse button. A nurse's assistant came in to check on the alarm and she checked Tyler's blood oxygen level. He had 99% for his O2 level, but his heart rate was over 100 beats per minute. Tyler is consistently in the 60's for his heart rate, thanks to a long history of physical activity, so she called his nurse.
When Molly came in, she listened to his wheezing and could see that Tyler was having an extraordinarily hard time clearing his airways. Tyler had Molly look at his throat, where she could see that his uvula is swollen and partially blocking his breathing. She called the doctor, so he could review Tyler's condition. By the time the doctor got to the room, Tyler was beginning to clear out his throat. The doctor did agree to up the morphine dosage per button click, so Tyler is able to get some pain relief from that.
Molly provided the most comfort though. She provided him with some ice water, that he could gargle to "ice" his uvula and throat. Hopefully he can reduce some of the swelling with the gargle.
Tyler finally was able to moisten his mouth and throat enough to dislodge whatever had been blocking his breathing and is resting much more comfortably now. The extra half dose of morphine probably doesn't hurt either. :)
We certainly feel that we owe a great deal to the compassionate and knowledgeable care of nurses like Molly. She did a great job of listening to his rasping and determining what might be the best solution for him tonight.
Tuesday, October 28, 2008
Tyler's night nurse just came in to check on an alarm from his IV (the end of a saline bag) and I was very surprised to find that his nurse tonight is a familiar face to me. Those of you from Vashon will recognize the name Molly McElroy, a classmate of Bonnie's. It is a small, small world some days!
I'm happy that we should get a few minutes to catch up tonight, but it's definitely a strange coincidence! I bribed Molly and Tyler to let me take a picture, so you could see the setup.
At 10:30 on Monday night, Tyler decided he wanted to be admitted to the hospital. The doctor had given us the option earlier in the day, but Tyler thought he might be able to tolerate the pain at home and opted to stay outpatient. Unfortunately, with his inability to take pain medication, he was unable to get any relief. On a scale of 1 to 10, he rated his pain level as a 10.
We finally got checked in and he got a shot of morphine at 2am, but it was a little bit of pain relief and very late in the game. They gave him another shot a few hours later and then, this morning, hooked him up to a PCA of morphine. A PCA is a patient controlled analgesic. Essentially, Tyler now has a button he can press to dispense another dose of morphine. After consistent use for a few hours, he estimated his pain level had finally dropped to 5-6 out of 10. The nurses have explained to us that getting early relief from pain is key to managing chronic pain like this.
We expect Tyler to be in the hospital for a few more days, so please feel free to e-mail him or comment on the blog (he gets copies of all comments made here) if you want to share with him or encourage him. He should have internet access by tonight, so he will be able to get online anytime he is feeling good. The nurses and doctors at UW have definitely explained to him that the symptoms he is experiencing from mucositis and esophagitis are not abnormal for the treatments he has gone through.
Still no update on the lumbar puncture yesterday, but we'll definitely let you all know when we know more. We know a great many people join us in hoping that the results are clear and free and we can proceed with Tyler's transplant.
Monday, October 27, 2008
I hate to see Tyler in such pain, especially as there is absolutely nothing I can do to help. His throat is closed up so tight and causes so much pain that he is not eating or drinking anything. He's hungry and weak, but is unable to get anything down his aggravated throat. He's had less than a cup of milk and juice today. Thankfully he had several cartons of milk yesterday, but he wants to eat and just can't do so.
Tomorrow he will be getting a PICC line installed so that he can get nutrition through an IV. The doctor decided today to hold all of his medication except for 3, 1 of which he can get through IV. Still it is a struggle for him to swallow those giant pills. I think the pill makers might need to think about shrinking some of the pills a bit. When your throat is swollen, the idea of a giant pill is more than one can bear.
We spent our weekend at the SCCA, and then spent more time there today. He's gotten transfusions of both Red Blood Cells and Platelets, as well as some saline to help him hydrate through the esophogitis. He got a unit of platelets on Sunday and two more bags this morning, but still only got to a count of 47. The all-important lumbar puncture requires a minimum of 50 for a platelet count, but our doctors begged and the UW somehow agreed to do the procedure despite the slightly low count. We hope that the CSF they took today will indicate no leukemia at all and we can begin to focus on the next phase of this transplant.
We're back to SCCA for more transfusions tomorrow and I hope that it will be an easier one for both of us. Please pray that I have gentleness and patience as I encourage him to eat something tomorrow. I'm not being a very supportive partner this weekend because I am so worried about him. I need to push less and help more.
Because Tyler has barely eaten in the last 5 days, he is sleeping most of the time right now. With that in mind, we need to ask that phone calls are kept to a minimum for the next several days. We'll continue to post as we are able to, but we appreciate your understanding that it's hard to field phone calls when you are feeling beaten and tired.
Thursday, October 23, 2008
Thankfully, Tyler has only one scheduled radiation treatment left. They tried to schedule a Monday appointment for him and he told them he was done with the whole thing after Friday. I don't blame him... The toxicity has continued to build and he is feeling poorly again today.
One of the side effects that I didn't expect are these huge bouts of hiccups. They are getting more frequent and we can't find anything that seems to trigger them. But... he gets violent hiccups for a few minutes at a time throughout the days now. The nurses and doctors said that it is due to an irritation of the diaphram and is likely a result of the radiation treatments.
Tyler met with the radiation oncology doctor today and she says that his symptoms should begin to improve within the few days after treatment stops. I'm counting down the minutes until he starts to feel better. This is by no means the end of the crappy days, but we're ready for a break for now.
Tyler goes in for a blood test tomorrow and we are kind of expecting that he may need a transfusion. His platelets had dropped from 58 to 38 over the last weekend, so he might continue to drop a little bit lower. He must be over 50 platelets to get his lumbar puncture on Monday, so we are thinking he'll get a transfusion by Monday at the latest. If he dropped below 20, then they will likely give him a transfusion tomorrow too. The biggest risk of low platelets is the risk of bleeding. Platelets are the part of your blood that contribute to clotting and you have to be extra careful not to get hurt if your platelets are low.
The last day of radiation tomorrow, so we are counting the hours. 15 hours from now..., Tyler should be done with this phase!
Wednesday, October 22, 2008
Today I completed my 10th radiation treatment! We have 2 more this week, and then we get to check my spinal fluid on monday. We should know by tuesday whether or not the radiation was effective in clearing my spinal fluid. If its clear, we can proceed with the transplant with its current schedule. If its not clear we will be doing an additional 6 radiation treatments. Ive been having some difficulty the last day and a half swallowing, and thus getting the proper amount of nourishment into my body. Today has been particularly difficult, but we seem to have found some good pain killer and a mouthrinse that should help me out. If I cant get the right amount in, I will need to have some assistance from an IV at SCCA. Things are much better this afternoon than earlier this morning so I am very hopeful.
All of this really makes me appreciate things I had never really thought of and had taken for granted in my life. Being healthy is truly the most important thing anyone can have or aspire to. I never thought that I would encounter pain swallowing or be afraid to eat or drink, but those things have happened during my radiation regimen. I am fortunate to have some great doctors and nurses whom have been able to spend quality time with me discussing my ill effects. Of course I am also extremely fortunate to have amazing caregivers, and moral support, and prayer from all of you! I would be nowhere without all of you! Whenever I think about the auction, and all the great times Ive had in my life it makes me fight even harder than I thought possible.
I mentioned my schedule earlier...........I will spare the daily details, but the transplant date is currently November 25th.
Please take care all and do everything in your power to stay healthy!
Tuesday, October 21, 2008
We are happy to report that we are 75% done with the radiation treatments, but that Tyler is starting to feel more of the cumulative effects from treatment. His throat has been getting thicker, but today was the first day that it pained him to swallow all day long. He is trying an oral rinse tonight, but I'm not sure that it relieves enough of the pain for him. We'll keep trying tomorrow to find a combination that works. If Tyler tells the nurse that the oral rinse isn't working, they will give him something called "Magic Mouth Wash". Sounds like something that you would find at Disneyland Resort, right? Apparently it is a blend of common numbing agents that will help numb up your throat and mouth.
He is also feeling slightly more fatigue than he was before. We are trying to make sure we get 8+ hours of sleep at night and also Tyler takes a nap as often as he can. They attribute the fatigue to the fact that all of your cells are having to repair themselves after they are damaged by the radiation. Extra calorie intake and extra rest were both prescribed before the treatment even started.
After the 3 treatments this week, Tyler will be getting a lumbar puncture on Monday to test whether or not we were sucessful in clearing his CSF. If so, the transplant is on track for the week of Thanksgiving. I'm nervous for the results of his test, but we should know the outcome by the middle of next week.
Our thanks for the prayers, well wishes, notes of encouragement, and help with tasks. We've had more offers of help than we know what to do with and we appreciate you all so much for being willing to help us out. Let's all pray that Tyler's spinal fluid is free and clear of any sign of leukemia.
Tyler's birthday is rapidly approaching and, although we are unlikely to be out and about that day, we want everyone to enjoy Halloween to the fullest! Amazon recently sent me a post that says they have free shipping on orders of $25 or more of select Halloween costumes through October 23rd. You might already be organized for the holiday, but if not we suggest you check out Amazon's option.
Even better then that, Amazon Grocery’s Halloween page is stocked up on all kinds of candy and treats that your trick-or-treaters will love. From now until Oct. 31, save $15 off orders of Nestle and Hershey products of $39 or more. Plus, get free Super Saver Shipping on all orders that total over $25 (after discount). If you have yet to buy your candy, why not buy online, avoid the rush at the stores, and help a friend in the process.
Saturday, October 18, 2008
We are thankful that the radiation gives us a break over the weekend. Tyler's blood was a little bit low, so they asked us to come see them today too. They promised to give Tyler two units of Red Blood in exchange for us paying them a visit. Tyler has been feeling much better and did get two units of red blood on Thursday too, but he had gotten so low that he still had some anemia related side effects.
We actually had a fairly relaxing day there, watching football and sharing the lunch they provided. We went out to dinner at the Keg, using Tyler's birthday coupon, and then watched movies afterwards. Tomorrow, I anticipate NFL all day long in our house. The Bledsoe Football League (our fantasy football league) is going strong, so we have to make sure our teams play their best tomorrow!
Wednesday, October 15, 2008
Tyler said at our doctors' appointments today that, for the first time since the radiation started, he was hungry! It is such a relief that the nausea has faded again and his body has adjusted to the new regimen. He has been eating like crazy today to catch up to what he missed over the last week, so I am feeling much better.
We also got a new transplant schedule today from the folks at SCCA. Tyler's transplant is now scheduled for 11/25, two days before Thanksgiving. Hopefully his lumbar puncture on October 27th will show a leukemia-free CSF and we can proceed with this schedule. If not, we will likely be delayed another 14 days while he suffers through an additional round of chemo.
Assuming the best case scenario, Tyler is now 41.67% done with his radiation treatments. For those of you that wonder about our compulsive need to post numbers every time, rest assured... Tyler is the one that does all of these calculations. I'm always in awe of his mathematical abilities (and I'm a math major from college) because he consistently leaves me in the dust.
Andrea and I got our flu shots today, so that we can take care of Tyler and put him at less risk for illness this fall. I've never had a flu shot before, because I don't really believe the theory that you can accurately predict which strain of illness will be popular 9 months in the future. But... I am a loving wife, so I suffered through this year. The poke actually wasn't that bad and the mail today indicates that my insurance company will reimburse me for that cost.
Tyler can always tell when he is getting low on red blood cells and that proved true again today. He told me yesterday that he expected to need a transfusion and, sure enough, his Hematocrit has dropped to 23%. He's pushed his transfusion off until tomorrow (so he could steal a few hours of golf with Gump today) and will likely be moving around with an extra spring in his step by tomorrow night. The only remaining concern was that he dropped from 27% HCT on Monday to 23% today. That's a steep drop, but not unexplained with the radiation treatments.
His WBC count today was the lowest we have ever seen at .93. The normal range is 4.8-10.0, or something like that. We were happy to see that his blast count was all of the way down at .02%, so I am hopeful that is indicative of positive CSF results in a week and a half.
I think that is most of the exciting news from today. Thanks for the e-mails and comments for the blog! We are touched to hear that people are thinking of us and offering to help. Friends and family make this battle a much easier thing to bear.
Tuesday, October 14, 2008
Today we reached the 33% done mark in our radiation schedule and we had a MUCH better day! The new medicine seems to be working well and we both ate well today.
An added bonus today was a personalized tour from Amber, a nurse at UW. She is the sister of my cousin Aaron's fiance, Heather. Is that confusing or what? As a brief detour... My heartiest congratulations to the recently engaged couple!!
Anyways... Heather and my aunt Jolyn put us in touch with Amber, who offered to give us a tour of the oncology floors at UW. Amber works on the 7th floor, which we have heard is the best in the hospital, and the floor that contains the isolation rooms where Tyler will become a bubble boy.
She showed us the two rooms that they use for isolation and it was much different than I imagined. Essentially, Tyler's room would be covered in plastic but not closed off from the hallways. They put a lead shield in the doorway to keep the radiation from escaping and visitors have to stay on the far side of the hall, but his room is almost like another hospital room in other ways. He will have a nice view and, most importantly, internet access while stuck in there. I plan to IM the guy, since that will actually be easier contact than yelling at him from across the hallway.
What is really strange about the isolation rooms is that you see duct tape everywhere. Every surface is covered with plastic or other covering and taped in place. As Amber explained it, Tyler's radioactivity will ony last 5-10 days. The inanimate objects in the room that he has direct contact with would stay radioactive for months. For that reason, they try to keep him from directly touching anything. The floor is covered, the toilet seat is covered, the hospital gauges on the wall are covered... Even the remote control for the tv is covered in a plastic bag.
She told us that anything that goes into Tyler's room will need to stay in there until he leaves. So when he orders his meals, he should probably avoid ordering fish (unless he wants to smell the remains in his trash for the next week or two).
Amber was so amazingly friendly and made me feel so much better about the time that Tyler will spend inpatient at UW. She introduced us to several members of the staff there, although I will not remember them after just the brief meeting. It did make me feel really confident listening to her after hearing how knowledgeable she was about Tyler's protocol and similar treatments for other patients.
After the tour, we headed down to the basement for Tyler's 4th radiation treatment, which seemed to go fairly quickly today. I was listening to a book on my MP3 player, so I don't actually know how long it took, but it felt quick today.
Tyler was feeling so good today, that he wanted to stop by his work and say "hi". So we put in a brief appearance with the Children's crew and got to catch up with them. It was great to see them and let Tyler explain what is going on. It was clear to me that he is well liked and well respected with the people stopping to say hi or ask his opinion.
He got a massage in the evening, with hopes that it will make it easier to lie on the radiation table in the correct position. He says the real test of that is tomorrow when he lays down for his next treatment.
We ended the evening with yummy dinner and a game of Nickel Nickel with Gump, Tud, and Andrea. It was such an improvement over the last few days that I am in great spirits tonight!
We're going to try to copy our day and make tomorrow just as smooth!
Monday, October 13, 2008
It's hard to see Tyler so affected by this radiation, but he is not feeling himself right now. His stomach is upset and his head hurts and his brain is funny. I hate to see him struggling with this new treatment, while I am profoundly thankful that he hasn't had to deal with all of these side effects the whole time.
He still has a full head of hair, but is very low on energy and nervous about eating. We got a new anti-nausea medicine today, in hopes that this one will work better for Tyler's system and he will feel more like eating. It was a pain to chase down today, but the pharmacist ended up letting me take it with the assumption that the insurance will eventually pay for it. Our case manager seems to think this is the case too, so hopefully the insurance gets resolved tomorrow. Bless the hearts of those who helped me get the medicine today because I was worried about getting something that will make it easier for Tyler to feel comfortable with dinner.
Because of our weird schedule, my eating is down too. I didn't have anything to eat today until noon. Those who work with me day in and day out know that I normally have 2 meals in me by that time (1st and 2nd breakfast). Pray for us that we can get on a more normal eating schedule. We're aiming for 4-6 small meals per day, but we have yet to achieve even 3 meals in a day.
Tyler (my king of numbers) tells me that we are now 25% done with radiation treatments. I'm holding on to that number and hoping the remaining 8 treatments pass in the blink of an eye for us. We're napping in the afternoons and taking it easy until he is feeling better.
Much love to all of you and many thanks for the prayers and good thoughts sent our way.
Saturday, October 11, 2008
Tyler had his second dose of radiation today, but also started to experience some of the side effects. He felt a little bit "off" yesterday and took a 2 hour nap in the afternoon, but was able to have some dinner. Today, Ty was a little more nauseous but took an anti-nausea pill and did okay with that.
We are worried about the effects of constant radiation, but will fight this battle together. They tell us that the anti-nausea medications are really good these days, so we'll probably use that to our benefit.
We have Sunday off from treatment, so we plan to lay low and watch football all day long. Then we are back to the radiation department Monday through Friday for additional treatments.
Friday, October 10, 2008
Today I went through my first treatment at the UW with radiation therapy to my spine and cranium. It lasted about 30 minutes total, and was relatively painless. The position I have to lay in is the most difficult part, as it puts a strain on my neck/shoulders/back. I am hoping to get some massage to help relax my muscles.
They told me I would feel nothing during the radiation treatment, but I must say that I felt it a little bit. They started with my lower spine, and it sounded like 3 separate radiation applications.........they moved to my upper spine for 3 more, and then on to my head. When they got to my cranium, I could see a black/purplish line going through my head kind of like a copy machine, and there was a strange scent associated when that was going through me. They did this 3 times from my left side of my head, and 3 from the right side. I was able to relax my head and muscles this time much better than I was able to on film day on tuesday. That day I had to lay in the awkward position for about 45 minutes.
They told me to expect that I would get nauseous about 1 to 2 hours after treatment, and my mouth, esophogous, etc... feel somewhat different but no nausea as of yet. I do have a bit of a headache, so Im trying to drink plenty of fluids.
So 1 down and hopefully only 11 to go.
Wednesday, October 8, 2008
That is really all I have this time. I hope everyone is doing really well, and we are doing fine.........well at least as fine as possible. I am preparing for my radiation therapy which will last two 1/2 weeks. The side effects sound nasty, and so I may be introduced to some unpleasantness soon. Wish Mandy, myself, and anyone else that must endure my whining and complaining.
Another bit of news is that my old work phone #, if anyone has it with the 206 prefix is no longer of use. I only have the 425 prefix (home cell), and if anyone needs that # please email either Mandy or I.
Once again I hope everyone is doing really well!
p.s. I will put up a new post soon about how my treatments are going, how they feel,etc.....I will probably spare everyone the nasty side effect descriptions though.
Friday, October 3, 2008
Pretty much only my basketball buddies from ......from how long ago? Wow! Im thinkin 15-20 years now. Only my basketball buddies will understand the creature reference. Yesterday at the UW, part of my simulation for therapy involved forming a mask for my head.....so yes guys I again will be wearing a protective mask. Fortunately for me I wont have to wear it in public...........it is kind of a cross between Mike Myers from the Halloween movies, and an NHL hockey goalie.
During my treatments I have to get into an identical position on a flat table and put my head inside this mask created just for me. The mask is pliable and acts as a cradle for my head while I try to remain completley motionless for 2 (15 minute) periods. The mask helps to prevent movement. They also have given me 6 new permanent tattoos on my backside from my bum to my neck and also on each side of my spine. They were sorry when they were applying them because of the momentary pain, but the pain was nowhere close to some of the other things Ive been through........so it was actually pretty easy........I told them to bring it stronger next time! The tattoos are pretty boring though because they are just dots.........for some reason they wouldnt tattoo Mandy's name for me?
These are markers for the radiation treatments, and they somehow get you into a precisely identical position for every day I get these treatments over 2-3 1/2 weeks. The position I will be in isnt exactly very comfortable, and so I will need to practice some relaxation exercises for my neck and shoulders. Im hoping to get some massage to help with this also.
Alright........I am really off to my blood draw now.........talk at ya later. Take care!
During the last 20 months of fighting this disease I have constantly been reminded of how tough my opponent is. My CML has been unusually aggressive throughout my care, and each bit of new news reminds me of that. As it turns out the Spinal Punctures have not reduced the amount of Leukemic cells to a satisfactory level. The Thiotepa chemotherapy was working somewhat with only one dose's results examined. The combination of the 5 spinal punctures with chemotherapy with a net result of lowering my leukemic cells in my spinal fluid from 35% to 16%........(these are approximates with slight margins of error) was not enough of a drop to warrant proceeding with that method.
So we are switching the focus over to radiation therapy. We heard this news on wednesday and I had my first consultation and simulation for this therapy at the UW yesterday. We met a few doctors, assistants, radiation treatment specialists and they seem to be a really great group to work with. The main doctor I spoke with has essentially told me that up until this point, what has been thrown at me has essentially not worked in doing what it should have. Because my CML is so strong and so aggressive, they will need to bring out the "Big Guns" to battle it. That would be radiation treatment. My SCCA doctors could have started with this plan, but because of its side effects and the fact that it is a much tougher route they really felt the spinal fluid chemotherapy injections were a better option. So here we are moving on to a different plan..."again"!.........
I understand that the doctors are doing their very best to take care of me, and under normal circumstances these methods usually work. It is just very hard for Mandy and I to continually be disappointed with bad news about how tough my CML is. I just want one treatment plan to go right..............That is all we want right now! Fortunately the one thing going right so far has been my Nilotinib medication (oral chemo taken daily)........just like the Gleevec and the Sprycel......it is doing a great job at least right now in keeping my CML under control to keep me feeling fairly heatlthy. It is extremely important that this continues for awhile longer so I can go into a transplant as healthy as possible.
So briefly about the radiation therapy since Ive only just learned about it. It is a highly successful way in attacking cancer cells. For a minimum of two weeks, I will be going to the University of Washington for these treatments. There will be what we understand to be 2 treatments daily of radiation. One treatment will be for my head, and one will be for my spinal column. They wish to be very aggressive in the amount of radiation they give to me because of the nature of my disease. They explained they wish to give me the maximum amount of radiation spread over at least 2 weeks but possibly up to 3 1/2. They have to give it in small applications so as not to do major damage to me. The reason they will need to give radiation to both areas is that the cerebral spinal fluid extends up into the cranial area, and they need to make sure "all" of the cancer cells are attacked.
The side effects explained to us included nausea, bathroom issues :o).........they said something else of course, feeling very tired most of the time, hair loss, possible skin issues, esophogitis, mucositis possibly(mouth sores and difficulty swallowing), and a few more I dont even remember right now. These sound very scary as always, but I have been preparing for all of these already and know that day would be coming soon anyway. Up until this point I have been extremely fortunate with side effects so I guess its time to even the score. Mandy and I feel very good about the UW team we are working with and with some strong prayer, good fortune, or whatever each of you believes in this treatment plan will be the one that finally gets me to a ready position for the transplant.
We will continue fighting this disease for us, and for all of you supporting us!.........Thank you again for constantly lifting me up!! I truly am a lucky guy to have the best friends possible, and such an enormously big hearted family that has taken care of me at all times! Now it is time for me to head down to the SCCA for another blood draw.......