Osteo-united

This blog was created so that individuals with Osteosarcoma, a type of bone cancer, and their families can share their stories, thoughts, feelings, struggles, etc with the Tumblr world. We hope to spread awareness and support across the nation, and maybe even the world! If you wish to share your story, just send a message.

[osteocommunity]

Wendy

9-13-11

  I was just  in the hospital from September 1st until the 9th. I had a chemo treatment on Thursday (Sept 1st) and waited for my blood levels to clear so I could go home. On Sunday morning (Sept 4th) my levels were clear (which is a record for me), but I had a fever and felt terrible. If your temperature is 100.4 or above they admit you (or keep you) in the hospital. I had a fever for several days and felt lousy so it postponed my leg surgery twice that week. The doctor went out of town so my leg surgery is rescheduled for Wednesday, September 21st. I will supposedly start chemo back up 2-3 weeks after surgery, but I'm not sure because of the lung surgery. I've got another 4 1/2 months of chemo before I'm done...

  They did another CT scan of my lungs and it is still showing the nodule in my left lung, unchanged after chemo. Since it is under 1 cm in size they aren't sure if it is cancerous, but they want to remove and biopsy it to be sure, so that's another surgery I have to go through. They'll cut the back left side of my body, collapse my left lung, and feel for any bumps and cut them out along with the nodule. If it turns out to be cancerous, they have to do the same procedure with my right lung as well. They are going to wait until I heal from the leg surgery before they do the lung surgery. The lung surgery will be at my local hospital though.

  While I was in the hospital with a fever for several days I noticed my texting began extremely difficult for me one evening. It took me literally 30 minutes to type a 5 word message--it was insane! That freaked me out, so I let the doctor know. Later that night I woke up and immediately threw up in my bed...had no reaction time at all. The nurse called the doctor and he ordered a CT scan of my brain at around 2 am. The next morning I woke up and my mom was there with me. I was slightly confused about certain things which worried my mom. First it was the texting, then I couldn't sign my name for a consent, then it was me attempting to pee on my bed or something, then it was me trying to put soap on my toothbrush, but ending up trying to put toothpaste on my toothbrush holder...go figure. Just some weird neurological stuff was happening.

  They had me do a lumbar spinal tap to test for meningitis, an EEG to test for epilepsy/seizures, and an MRI of my brain to make sure I have one...haha ok so it was really to make sure everything was functioning properly. I will say, the MRI of the brain is very different from any other MRI I've had. It's much more annoying and if you're claustrophobic, FORGET IT! The day of the spinal tap I had terrible nausea, constipation, and a fever which was not fun AT ALL. I also had to talk to a neurologist to see if I was losing it. Let me just say for the record, I can't count down from 100 by 7's if I was completely fine mentally or mentally ill! Geez lol. All of my tests came back ok. Basically what we think happened was all side effects of the methotrexate. Here is a list of what COULD happen:

  Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; bone pain; calf pain/swelling; change in amount of urine; chest pain; confusion; dark urine; diarrhea; dry cough; enlarged glands; fatigue; fever or chills; inflammation of the pancreas (stomach tenderness, nausea, vomiting, fever, increased pulse rate); irregular heartbeat; mental changes; mouth sores; muscle weakness; persistent sore throat; red, swollen, or blistered skin; seizures; serious infection (herpes, hepatitis, blood infection); trouble breathing; unusual bleeding or bruising; unusual pain and discoloration of the skin; vision changes; vomit that looks like coffee grounds; yellowing of skin or eyes.

  I had a few of those side effects and am still experiencing the discoloration of the skin (mostly on my hands, and they're very dry), but I think everything else is back to normal for the most part. That was a very scary thing that happened and I pray it never happens again. I know this note has been very personal, but I've been wanting to type a list of changes that have been happening to my body or describe pain I've been experiencing so I can remember in the future and so you can understand what I'm going through. The next paragraph will be about that stuff, so if you don't want to read it you can skip it.

  Sometimes my tibia feels like it wants to break in half, right through my skin. I've had neuropathy in my left leg since May 17th when I had my biopsy. First the pins and needles feeling followed by numbness and then burning. The left side of my leg is STILL numb and the top of my left foot is sensitive to the touch/burns. My feet have gotten a few spots on them from discoloration, however my hands are the worst. They have been very dry lately also. My fingerprint pads are peeling right now, so it's the perfect time to commit a crime! Haha that was a joke, but it rhymes which makes it even better! I've had a few yeast infections from all the medications I've been put on. My arm hair and eyebrow hair are finally starting to come out. My leg and armpit hair grows back like peach fuzz and not very quickly. My head hurts about 1-2 weeks after my mom shaves my head. The hair looks like little splinters sticking out of my head and it feels kinda like that when I lay down...that's when I know it's time to shave again! I haven't lost my taste as of yet, though I have had a long period where I couldn't eat anything spicy due to mouth sores. I'm sure that day will come again soon when I do more chemo, but they gave me a new drug called Palifermin which did prevent mouth sores the last few weeks. I had a loss of appetite the last several weeks. I've experienced back pain--intense burning throughout the back muscles and only a heating pad helps it. Pass that along to any friends you may have going through chemo. Sometimes I feel bruised from the waist up...the slightest touch feels like someone is pressing on a bruise and it's quite painful especially when they take your blood pressure! My face broke out into baby acne all over...I changed my face soap and it's better now. The cancer/chemo has pretty much affected my whole body since I pretty much put info about it from head to toe in here.

  I have a week off right now to enjoy life and I am doing my absolute best. I've been fighting off migraines from the spinal tap and laying in bed for the last few days...not fun. Richard took me to work today to say hello to my co-workers/friends and when we got home I was VERY CLOSE to throwing up. On Friday night when I got to go home I threw up in my dad's truck because the bright lights from cars driving by hurt my head bad and I just felt sick. I felt terrible for that happening, but everything got cleaned up and all is well. It was just late and bad timing. I am hoping to be able to drive in the next day or 2. I just need to be able to sit up and look at stuff in the light. When you have spinal migraines you are supposed to lay down immediately in a dark room. It's been hard for me to walk around very much in fluorescent lighted places or in the sun without getting a headache, so that's been the only pain since I've been home. I want to enjoy my time and go out, but my back has got to get better first.

  As always, I want to thank each and every one of you that has prayed for me over the last several weeks. I love you all and you are a wonderful support system to me. I don't know what I'd do without my parents, family, and amazing friends. You all make a difference in my life and I appreciate the love you've shown me. Keep up the prayers as I have 2 surgeries approaching. I will put my trust and faith in God for He is the ultimate healer.

[osteocommunity]

To artists,

We are looking for someone who can design, in any medium, a yellow dragon in the shape of a cancer ribbon so that we can make shirts. If you can help, please send me a message here or to arynlove.tumblr.com or an email to [email protected]

[osteocommunity]

Help us help others

The Sean Brannigan Osteosarcoma Cancer Fund wants desperately to help others. However, we have raised less than 1700 so far. We want your help to spread the word. Cancer is extremely difficult to pay for because chemo is expensive, staying in the hospital is expensive, and travelling is expensive. Because we initially started raising the money for my boyfriend Sean, we are unable to donate our current raised money to others, which is why we are raising our donation goal and asking that everyone spread the word. We genuinely want to help others and we need your help. If you'd like to get involved please send us a message so we can spread the word and awareness across the nation! If you have any questions, message us :) As I posted, our fb page is at facebook.com/osteosarcomafund Thanks guys!

[osteocommunity]

Wendy

8-22-11

  Here are the notes my mom wrote during the appointment at Moffitt today...

  Pre-Op 8/22/11

  No knee involvement!

Will be in hospital 2-3 days.

Allograft (donor bone) is preferable. More normal function and longer-lasting than titanium.

40-50% chance of bone graft not healing.

30% chance of infection. Will receive antibiotics before and after surgery.

Less than 5% chance of blood clot

Screws: 3 above, 3 below

Plates: 1-2

Surgery takes about 4 hours

May need blood transfusions

They watch for callous bone formations – her bone accepting the graft. Chemo can delay this process.

Restart chemo 2-3 weeks after surgery

Before gauging tumor death, need path reports. Can take 2-3 weeks.

Will lose one blood vessel. 30% chance of losing second of three vessels. If so, may not have enough circulation and this would lead to below-knee amputation.

If nerve involvement, high probability that numbness will continue. May have difficulty spreading toes. Could lost motor function – ability of foot to flex and extend. If so, would need to wear a brace to aid dropfoot.

Will need to use crutches 6-12 months after surgery.

Below-knee amputation is option to above surgery.

High probability of successful limb salvage surgery.

  Please pray for no infection, not having to take out 2 blood vessels, and for as little nerve damage as possible. Thank you all!

[osteocommunity]

Shelby

Last night I visited Sean for his first two night chemo stay at the hospital. It was awesome to spend that time with him, even when he napped. As I was leaving I was overcome with such sadness. It was so hard to leave him there.  And as I was sitting there feeling sorry for him and feeling sorry for me, I was overcome with such guilt! I started thinking about how many people have lost loved ones. How horrible that was for them, and there I was sad because it would be another day or two before I'd see Sean. Sometimes, we forget how lucky we are, even in unlucky circumstances. 

[osteocommunity]

Shelby

I think it is really important to find the good in every situation, so I will share something positive that has come from Sean having cancer. 

The most positive outcome so far is the way this situation has really brought us together, as well as his family and I. Sean and I work really well together, and I think we work better when we are in tough situations. We are better at helping each other and trying to understand each other. I think that this has brought us closer and has showed us how short or unsettling life can be. I think both of us want to make sure we experience new places and new activities together after we are done with this. Furthermore, prior to this happening I had always felt like his mom hated me. However, she and I have gotten much closer since we are having to communicate more and have spent more time together alone. I actually am starting to feel like I am a part of their family and it is awesome. Although I hate that Sean has to go through this, I am happy that it has given all of us a chance at bettering our relationships.

[osteocommunity]

Shelby

Sean has been feeling a little bit better. He has been able to eat, which is the most amazing thing as he is only weighing 138 right now. Next week he has a 3 day intensive chemo at the hospital, that means that he could be staying at the hospital for up to two weeks- it depends on how the poisons and antidotes affect him. It is going to be so horrible to not have him at home, or even at his parents' house which is only one hour away as opposed to two. So far, Sean hasn't lost any hair yet! He was supposed to lose it by day 14..which was only yesterday, haha, but he is still hopeful that it won't go. This has definitely been a struggle, nobody can say it is easy, but making something positive out of it, or just having a positive attitude, really improves things. 

[osteocommunity]

Wendy

8-11-11

  I went in on Friday, July 29 at 10:30 am for my second round of methotrexate. The port accessed immediately this time, no problems. I had them start my 6 hours of fluids right away so I could start the chemo sooner and get out sooner. I had my 4 hour dosage of methotrexate around 6:30 pm. They check your levels every 24 hours for the first 2 days, so day one I was at 1.9 at 6:30 pm. Day two I was at 0.21 and that really encouraged me because the last time I went in, my first level check was 7.2! I had been sick and not eating/drinking much. By day three they checked my levels every 12 hours so 6:30 am was 0.16 and by 6:30 pm I was at 0.1 on the dot. I had to be UNDER 0.1 to leave by then...so that was really frustrating. It was like that last time. By the 4th day I had to be under 0.08 and when they checked me at 6:30 am I was 0.08 on the dot. Again, so close and frustrating. At 6:30 pm when they checked me I was FINALLY at 0.07 and able to go home! Getting home around 7 pm on Tuesday evening was better than 11 pm the Tuesday before. I'm going to go ahead and plan on staying in the hospital for 5 days each time I go for the methotrexate, that way I won't get let down anymore. My levels still frustrate me though lol. The worst part of the methotrexate would be the mouth sores. I got them pretty badly after that second round. The lining of the mucus in the mouth, inside of the lips, and throat went away. I have to be very careful not to eat anything spicy right now. I did some errands and laundry on Wednesday and on Thursday I worked for 6 hours.

  On Friday last weekend I went back in for my 3rd week of chemo in a row and had the 48 hour treatment of adriamycin and cisplatin. I did surprisingly well this time with the treatment as far as nausea, strength, and smell sensitivity are concerned. As soon as the chemo finished the doctor allowed me to go home! I got home around 6:30 pm on Sunday evening and ended up going to work from 7-5 on Monday, stopping by the hospital for an hour to get my white blood cell shot they needed to give me. I worked from 8-3 on Tuesday and from 10:30-3 yesterday. God has given me such strength this time around...it's a miracle. After that first 48 hour infusion I was a zombie for a week--couldn't walk much, wanted to pass out after taking a shower, didn't smile or laugh, nothing. This time has been such a different experience...and I am so grateful for it. Some people don't believe in the power of prayer, but I've told everyone that it's the reason why I've been able to work or had strength in general. God has truly blessed me and I am so thankful to Him for his blessings and to you all for your prayers.

  I am not due for my next chemo until August 25th...yay for 2 weeks off! I will be having the methotrexate treatments August 25 and September 1 which means I'll be in the hospital for about 10 days total out of 2 weeks. Before I do the first round of methotrexate they are going to have me go to the hospital Mon-Wed prior to that Thursday for a 1 hour IV each day of keratin growth factor for my mouth to try and help prevent sores. I really hope it works!

  My pre-op appointment is set for August 22 at Moffitt at 9:45 am. Mom and I will be driving up for that to see the surgeon's PA and to meet with the anesthesiologist. My surgery date is tentatively set for Wednesday, September 7th at Moffitt I believe and we have to be there at 5:15 am! They will remove the tumor along with part of the tibia which has been affected by cancer. Hopefully the nodule in my upper left lung will be completely gone when I have to have my CT scan again. They are going to also re-do my MRI of my left leg prior to surgery. After the surgery they are going to see how dead the tumor is and if there is a 90% death rate, they will consider it a good response to chemo and continue me on an 18 week plan after surgery. If there is under a 90% death rate, they will consider that a poor response and I will start a few new chemos and go from there. I will keep you all posted on everything as it comes along!

[osteocommunity]

Wendy

7-27-11

  I went in Friday at 10 am to the doctor's office in the hospita and was surprised with a wonderful gift box! The American Cancer Society does a Cattle Baron's Ball every year and they have gifts donated for cancer patients that get distributed amongst local places. 5-6 nurses came in with this 2 1/2-3 ft tall box that said "Popcorn" on the side (hence the theme lol) and I just thought it was a box full of drinks cuz all I could see sticking out were bottle tops lol. I said "Sweet! Beer! Let's have a kegger!" Haha, they all cracked up then told me that the box was actually for me and I was just in shock. It was like Christmas came early! They chose me to be one of the recipients because I'm a newer patient, they like me a lot, and thought the stuff inside was perfect for me. The main gift is a Nintendo DSi XL! I got a video game of 100 classic games like solitaire, pool, hearts, etc along with an Indiana Jones game which I am not good at lol. There were boxes of candy like at the movie theater, an old fashioned popcorn turner for over the stove, seeds, oil, cookies (which the puppies broke into), root beer, a $39 gift certificate towards a massage (which I used today), The Rising Temptations, etc. It is a wonderful gift and I am so thankful to the people who donated it to me.

  Ok, now for the actual visit lol. When they tried to access my port the blood wasn't coming out which sometimes can happen from a layer of skin forming to try and protect you from foreign things and so they had to put an unclogging agent (called TPA) in both sites which took about 30 minutes to work and it was fine. I didn't get up to my room until 2-2:30 though and apparently when you do methotrexate you start with 6 hours of fluids first followed by the 4 hours of the methotrexate. I knew they were giving me a VERY high dose, but I didn't realize how deadly it was to me until the doctor explained to me that basically if they were to just give me the 4 hours of methotrexate and send me on my way home I'd be dead in 5-6 days from organs shutting down! DANG! Hence the multiple day hospital stay to monitor your body, flush your system, and administer their "rescue" drugs. They said the other chemo medications I'm on are very hard on you as far as nausea/vomiting, though I didn't really throw up except once. The methotrexate is supposed to just be more of a mouth sore chemo. Well, I actually threw up before my chemo on Friday. I'm not sure if it was the soggy chicken strips from the cafeteria or "anticipatory nausea" which is what they said. Maybe a combination of the two? Either way, I was sick from Friday night until Saturday afternoon I managed to keep a piece of toast down. They gave me Ativan which is an anti-anxiety medication used for nausea also along with other nausea medications. This weekend I'm going in more prepared for that with my own hand soap since the smell of theirs makes me nauseous now and they had a bedside commode for me which helped with the nausea also since the smell of the bathroom just gets to me at first. Anyway, I was sick from Fri night til Saturday late afternoon then had some toast in the evening and was ok. It was awful though.

  They check the blood levels of the methotrexate every 12 hours per the hospital rules/guidelines. Sunday night at 9 pm the levels were 0.29 and it had to be under 0.10 total. Monday morning at 9 am it was 0.17! I was so close and I just wanted to go home. I had to wait til 9 pm for the next blood draw (and it takes an hour and a half to two hours to get the results) so dad waited with me and we found out around 11 at night that I didn't make it! UGH! I was at 0.10 on the dot and it had to be less than 0.10. So that took me into Tuesday morning when my levels were tested and I was at 0.09! Now, what they had failed to tell me is 72 hours post chemo you have to be below 0.08 not 0.10 anymore. So that SUCKED! Again, more waiting and frustration. It was all I could do to hold back my tears in front of the doctor and nursing staff. Becky came and kept me company and we watched a few Disney movies, then mom came after work and at 9 pm the nurse was there and ready for my lab work. The staff has all been so incredible to me, they really made my time there tolerable and even sometimes enjoyable despite the waiting games. Unfortunately there isn't much you can do to make your levels decrease because it happens on its own. Drinking can help and eating, but they have so much fluid going through you and on top of that I was drinking and doing my best. I was peeing 500-900 ml at a time for crying out loud! That's almost a whole liter! Anyway, drum roll please...Tuesday night just before 10:30 my nurse walked in and told me 0.06!!!!!!!!!!!! YAY! I was under 0.08 and could FINALLY GO HOME! So last night was wonderful for me. I was so happy to come to my own house and be with my puppies and my parents and in the comforts of my own home, not to mention take a real shower after like 5 days.

  I have to go through this whole process again this Friday only this time I have a prescription for Ativan to help with my anxiety/nausea pre-chemo and like I said, I'll be bringing my own hand soap along with some gum because when they flush the port with the saline solution you can actually smell it in your nose and taste it in your throat! Eww. Apparently only 1 out of 4 people experience that--again, how'd I get to be so lucky lol. The doctor is going to give me lots of anti-nausea meds even though this type of chemo isn't really a nauseating one, but he wants to take preventative measures and make me as comfortable as possible through all of this. The staff is so wonderful, truly. Right now I have some mouth sores going on and my throat is sore...last night I didn't really sleep at all. I think it's because I took a morphine cuz of my throat and it may have counter-acted with the Ambien, that's the only thing I did differently and trust me--I was SO tired. I'm sure tonight will be restful for me.

  I want to thank you all again for your thoughts and prayers. Let me tell you I got so frustrated being in the hospital that even words of encouragement got to me, but your prayers are truly all I need. I want you all to know it's been a crazy few months and my emotions have been haywire with everything so if I ever seem aggravated, don't ever take it personal. It's just a lot more frustrating than you could probably imagine, well until now that you've read that. So yeah, I go back this Friday for more methotrexate, then get released whenever I clear my levels and I'll be back in NEXT Friday also for the adriamycin and cisplatin. :( That's the chemo I did the first time that made me feel like crap for a week after and just took all my energy. That's ok though because they like force you out the door for that one lol geez. What a difference! And I put it this way: The adriamycin and cisplatin make you feel like you're dead, and the methotrexate makes you want to kill yourself lol. Not being serious, but it's just if I had hair, it would've all been pulled out this weekend, seriously. I think you can understand. Anyway, sorry to ramble, just want to keep you in the loop and let you know that if I seemed irritated, I was, but not towards anyone obviously, just my situation. Please pray for me, don't get me anything or send me things because I have no room for anything. Just pray. Prayers are the only thing that will get me through everything because they go to the ulitmate healer--God!

[osteocommunity]

Shelby

The worst part about being with someone who has Osteosarcoma is not being able to take it away. You can't just take it into your own hands, or body. You, at least usually, aren't a doctor and don't know how to help. You can't answer their questions about what is normal or abnormal, you can't tell them whether or not they should call the doctor about something or go see the doctor about something. You can't even say "I understand", because it is so far from the truth. All you can do is watch them suffer. And it's hard...immensely hard. The only thing you can do is turn such sad, horrible things into something positive. If you don't, you will drown. Be strong, live strong, and be positive, because in the end, that's all that you can give to them. 

[osteocommunity]

I thought I would share some signs/symptoms of having Osteosarcoma. There are only a a few and they do not necessarily mean that you do have Osteo, but definitely something to be aware of.

-Abnormal bone pain that comes and goes sporadically, may be greater pain during the night or while exercising. This pain may cause general stiffness. -Swelling, though usually is only detected if bone is close to the skin. -Loss of appetite (at least Sean experienced this prior to chemo)

[osteocommunity]

Hey everyone

I am going to be sharing a friend's tips for cancer life. You can find more info at facebook.com/thrivingthroughcancer The following is the first one I'm sharing:

Did you know that it is incredibly beneficial to massage your surgery scars? Unfortunately, we were not informed of this while Sweetpea recovered for a month in the hospital following her leg amputation. Thankfully, a knowledgeable massage therapist shared this information with us and it really helped to heal Sweetpea's scar. Why is this important? Tight hard scar tissue does not 'stretch', causing discomfort when extending and, in the case of Sweetpea, pain while wearing her prosthetic leg.  As for essential oils, we preferred to use lavender (a few drops used from day 7 on in the sterile water while wound cleaning) and then once the wound was completely sealed (about day 14) several drops of both lavender and helichrysum in the applied wound salve. Her new physiotherapist recently commented on how minimally wonderful Sweetpea's scar is.

[osteocommunity]

Meet Meagan everyone :)

 I'm currently 5 years cancer free. I am from Massachusetts:)  I was diagnosed with retinoblastoma (eye cancer) at 4 days old, I was treated with plaque radiation and received a prosthetic eye. I was cancer free till I was 12. I was having a hurting pain for a while, had X-rays and scans showed nothing at a local hospital... Dr said it was growing pains. My mom took me to a bigger hospital in Boston for a second opinion. Sure enough I had osteo in my left knee cap as to why it didn't show up in the X-rays . ( It also a secondary to the retina) The tumor was squeezed between my tibia and femur and eventually cracked my tibia. It was the size of a softball. Went thru about a year of chemo, Luckily they were able to save my leg with lots of hardware. 4 years later I was livin the life any 16 year old in highschool would be doing. I was in a vocational school and took up cosmetology were using ur arms is a big part of the job, my right shoulder started bothering me and so I had it checked out by my big guy ortho dr in Boston. He thought it was just from using my shoulders for work or from a heavy backpack. I knew something wasn't right. Few months later I wanted to go back because it was still hurting, he found a tumor this time about the size of a quarter. Went thru another year of chemo..I am the 1st person in the United States to have a 2nd primary osteosarcoma rather than a metastesy and only 2nd In the world ever recorded. A few months later I had a metastesy from the shoulder into my lungs. Was found in a thyroid ultra sound (had thyroid cancer as well but thats another story). Body couldn't handle any more chemo so they broke my ribcage and just took the tumor out. That piece of information is good for any osteo  survivor because although I don't smoke it spread to my lungs and is a secondary to it. I am a 5 time cancer survivor, at 21, and not letting any of that from letting me live my life as normally as possible. 

[osteocommunity]

Hey everyone! My name is Shelby. I am not an Osteo patient, but my boyfriend, Sean, is.When we first found out that Sean had a tumor, I was inconsolable. For about three days I would just break down and cry at random times in random places because my mind would always wander back to thinking about it and thinking that I was going to lose him. One of the first things I wanted, as crazy as the idea is/was, was to get pregnant!!!!! I wanted to get pregnant, at 20 years old, because the love of my life might die. That is one of those thoughts/feelings that nobody our age should ever have to consider. I am glad to say that we didn't go through with my irrational thoughts, haha, and that our surgeon is very optimistic about Sean's situation. We are only 27 days into our journey and it is already very challenging. Both of us are 20 years old, far too young to even have this happening, but there are even younger kids who go through this as well. Luckily, we have each other. We have support, and we are reaching out to others that are going through the same thing, so that they can have support as well. Every week I will post something about the experience. If you, or anyone you know, may be interested in telling their story and experiences with Osteosarcoma, please send us a message :) 

[osteocommunity]

This is Wendy, she found out in 2012 that she had Osteosarcoma at the age of 24. Below is her first blog entry on her page, https://www.facebook.com/OsteosarcomaThroughMyEyes

Post-chemo day 9

June 9, 2012 at 1:14pm

7-8-11

  I started chemo 9 days ago and I'm finally feeling more like myself again. I did well on day 1, but after that I turned into a very weak, nauseous, sleepy, zombie. I was in the hospital until Saturday and got to come home and drink, drink, drink! They dump the chemo in you and want it out of you ASAP. I have been VERY weak and laying down/sleeping for the last several days. Even taking a quick shower made me want to pass out. Fortunately, I have been able to eat, so that's how I've been trying to build my strength. While in the hospital I became extremely sensitive to smells...the nurses smelt so strongly it made me want to throw up. Apparently chemo really sensitizes the nose and ears. My mouth has gotten very dry and that's really annoying because it is causing me to have sores form and it makes me nauseous at times just because it's dry. So far I'd say that's about the worst of the side effects. That and the nylon stitches from the port in my chest. It's been a lot more uncomfortable than they said it'd be. They ended up having to put the port almost directly in the middle of my chest and I'm a side/stomach sleeper so that put a quick halt on that. I've been slowly adjusting to sleeping on my side, but it stretches the stitches and hurts. I went to the hospital today for blood work and they finally removed the stitches so hopefully it'll finish healing and I'll be able to sleep better. They did say my counts are finally dropping so I'm more susceptible to getting sick. I was encouraged not to go out in large crowds or see movies on opening day, etc. My eyes are red, we're not sure why exactly, probably lack of sleep mixed with chemo side effects. The doctor has been as helpful as possible with everything. I'm on morphine for pain because I'm not allowed any over the counter pain medicine since they all have anti-inflammatories in them which are blood thinners. That is the bad news. Ibuprofen is one of the only things that helps my leg pain and with my back aching from constantly laying down/sitting down I know it'll help, but I can't take it. They've given me Ambien for sleep, we'll see how that helps since I've only tried it once I'm not sure how I feel about it just yet. I'm hoping to not have to take anything and just be able to sleep, but unfortunately that hasn't happened the last few days. At first I slept all the time, now I kinda just lay there with my eyes shut and nothing happens and let me tell you, sleep is a must right now. I hear a type of drilling in my ears from my fan I think which sucks because I use it to keep me cool and to have the comforting buzzing sound...so much for that! So the down sides are a lot of annoyances...but I'm sure once this is all over with I'll be back to normal in time. It's going to be a long year, but I know I will make it through with my faith, family, and friends. The 3 F's I call it lol. I'm not due for my next chemo treatment until 2 weeks from today. My goal is to go into work at some point next week, not sure if I can do a whole day or not, but I definitely want to go before my next round of chemo. I'll go for as long as I can tolerate being there, but I will try not to overdo myself. You know me...I'll probably push too hard, but I will do my best to avoid it. I'm already sick of being at home...I don't know what to do with myself. It's been challenging just to sit and watch tv for a few hours on most days, but now that I'm starting to feel better I'll probably be online a little more, though it hurts my eyes to look at the computer. I'll probably be seeing some of your lovely faces soon now that I'm more up for company. I will let you all know when I'm ready for visitors, just please check with me first to make sure I'm available and up for it.

  I will post a note later on after my second treatment. I will be undergoing 3 weeks in a row of chemo next so the prayers will all be appreciated. I will be in the hospital for about 3 days per treatment, then released home. Here is a look at my schedule:

  Week 1- Adriamycin and Cisplatin

Week 2- no chemo

Week 3- no chemo (gotta get those blood counts back up for the next doses)

Week 4- Methotrexate

Week 5- Methotrexate

Week 6- Adriamycin and Cisplatin

Week 7- no chemo

Week 8- no chemo

Week 9- Methotrexate

Week 10- Methotrexate

Week 11- Surgery to remove the tumor and bone affected by the cancer in my leg along with the nodule in my lung if it is necessary at the time

  From there on if I have a good response to chemo I will be going through another 18 weeks of chemo, similarly scheduled as above. I will post that at a later time because this is all depending on how I respond and what needs to be done from the time of surgery. I hope that helps you all understand better what I'll be going through the next few months.

  Again, thank you all for your overwhelming continuous support. I have to say without my parents and siblings, I wouldn't have made it through these last 9 days in the hospital and at home...they've taken such wonderful care of me and put up with me. All of my needs are being taken care of and I've got a wonderful family willing to do anything for me so please know I'm being taken care of perfectly. God has truly blessed me and when I am up on these sleepless nights I pray to Him and thank Him for everything He has blessed me with in my life, including all of you. Most people ask how I'm doing and what they can do for me and the answer is always: pray. Nothing else can make me feel better on the worst of days, just lift me up in prayer and God will take care of me. Talk to you soon!

[zombiesaresuchaturnon]

You guys, please listen up.

I have asked to reach out for help through my friends on Facebook to help out for a great cause for her friend’s son. The cause is called Save Baby Reef.

He is 5 months old and diagnosed with Acute Lymphoblastic Leukemia. The family is from South Africa in the United States on a medical visa. They need donations to make sure they can stay in the country and continue his life-saving medical treatment. Please, reblog this and let everyone know what’s going on.

I know I don’t have that many followers, and this isn’t an attempt to gain more. This is serious.

[osteocommunity]

My name is Jeremy Gilmore, I am from Bakersfield, CA. I am the face of Osteosarcoma. December 20, 2012 I turned 18 years old. Like any other young man, I was thrilled to begin adulthood. I was beginning to make future goals and plans. In my eyes, the future was limitless. This is the age all adolescents wait for and here I am now 18! Everything was going great for me until the car crash. January 10th 2013, I was in a car accident which I am grateful to have survived. It left me with a sprained neck, back, shoulder, and internal bruising. I was in the hospital for 3 days. Once home, things got worse, I could not walk. My knee was swollen beyond belief. Quickly we returned to the hospital and after taking x-rays it was determined I had a sprained knee. The doctor also spotted a little ball between my shin and my fibula. He called for a private meeting in his office. I could tell it was not good news. He proceeded to advise me he found a tumor. My life after this day would change forever. He placed me on a knee mobilizer and referred me to UCLA in Santa Monica. On my way to UCLA in Santa Monica I didn’t know how to react to the bad news. I told my mom whether it’s good or bad I’m determined to fight! Once at UCLA, they performed CT Scans, MRI’s and a biopsy. It was very intense and stressful. Not only for me, but also for my family, Santa Monica is a good 3 hour drive from home. Mom was by my side – long days and nights. A couple days later we were home, and then we get the dreaded call: the diagnosis. I was told over the phone, UCLA has diagnosed me with cancer, Osteosarcoma. I was speechless, this could NOT be happening to me. I just turned 18 – cancer doesn’t happen to people my age. This was a bad dream and I wanted no part of it. Once reality hit, I started my first chemo treatment and I’ve been fighting ever since. In July, I had my first prosthesis, which in other words, is a knee and shin replacement. The surgery went well up until my cast was removed a month later. I had to go back to the hospital because my incision closed because the cast was too tight. After that ordeal, I slowly started the path to recover and started to walk on my own without physical therapy. I almost reached success, I could see it, but it was short lived. I started chemotherapy again and was told I needed another surgery. On Nov 23rd, I had the surgery which ended up being a staph infection. I’m still going willing to do whatever it takes without stopping. I am still fighting cancer and will continue to do so until I win this fight. I will be 19 next month on Dec. 20th which makes it a year since my fight began. Please follow my journey to create cancer awareness. My fight is not alone.