On December 15th at 3pm I received a call from my surgeon who performed my right thyroid-ectomy on December 10th. This call changed my life forever. He told me that while the nodule was ok, the right thyroid showed differently. Then he mentioned that dirty six letter word that no one ever wants to hear...CANCER!!!!!!
I have Non-Hodgkin's B-Cell Lymphoma, Large Cell type. What the hell does that mean, you ask!!! Well, I'm not quite sure. I meet with the hematologist/oncologist tomorrow (12/24). I have a lot of questions and hope to get a lot of answers. I will learn my plan of attack. On 12/31/09 I go for my PET scan. This (from what I understand) will help determine what stage of cancer I have.
I have decided to use my blog to help my friends & family stay informed with my journey through all of this. Sorry "hipsters", I don't think I will be having my left PAO for quite some time...much bigger fish to fry now. Some of my friends had mentioned carepages.com and caringbridge.org. I looked into them, but figured that since I have a blog already set up, I would use it. And people can "subscribe" to this blog so that they can get a notification when I post something.
I want to thank everyone that has been so supportive already. I am so blessed to have the people in my life that I do!!! I am strong and have fought through so much crap in my 28 years that cancer does not have a chance with me!!! I will beat this...failure is not an option!!!!
So if you would like to follow this journey...thank you!! And in the words of Lance Armstrong "LIVE STRONG"!!!!!!!!!!!!!!!!!!!!!
Wednesday, December 23, 2009
Wednesday, December 2, 2009
Quiet...but for good reasons!!
So I have been pretty quiet from my blog...but I have a great reason...I trained and ran a 5k!!!! I know - I can hardly believe it myself. I started training about 9 weeks ago and ran my first ever 5k on Thanksgiving!!! I finished in 37 minutes and to be honest, I think that is pretty darn good considering everything I have been through.
After I could breath again, my emotions got the best of me and I cried. Last year at this time I was still on crutches and wasn't even on 50% weight bearing and this year I ran a 5k!! I feel so blessed!!!
Now...about that left hip of mine...yeah it is definitely letting me know that it is there. I have been in quite a bit of pain lately, and I am not happy. This is the same kind of pain the right hip had before surgery. I am scheduled to go in for an injection in two weeks and I hope it helps. Although - I am hoping for it to be some miracle shot - but really all it is doing is prolonging life before surgery. Right now I am seriously considering calling my surgeon and setting up the date to have the left PAO done. I am just not sure...on one hand I say yes - let's get this done and over with so I can move on with my life, but on the other hand I say no - because I am not sure I am mentally prepared to do it again. I have a very tough decision to make right now. All I know for sure is that I want to keep running - I love it!!!
Before the race - I apparently am not awake yet...
I had a great support team. My friends Fred and Alicia ran the race with me and my husband and parents came to cheer for me. Fred and Alicia are both pretty tall and have not had hip surgery, so at the beginning of the race I told each of them that if my pace was too slow that I would be completely ok with them running ahead. Alicia ran ahead and finished her first 5k in 33 minutes - I am so proud of her!! But as much as I pleaded with him to run ahead, Fred stayed right beside me and near the end coached me to the finish line.
I am not going to lie...it wasn't the prettiest race. At 2.5 miles legs and hips were screaming! My left hip (non-operated) was the worst. My friend who ran with me said he could hear me "clicking" and saw the pain on my face. That is when he started talking to me - telling me that we were going to finish the race and that there was only a short distance to go. He really helped push me along. Because I am sure as many of you know the pain can be debilitating and once you reach a certain level of pain - your body wants to shut done. But I did it - I crossed that finish line!! When I crossed Alicia was there waiting and jumped on me exclaiming "You did it - I am so proud of you!!". I hugged her and I hugged Fred for helping me achieve something I wanted to badly to accomplish.
After the race - see I'm still smiling!!!
After I could breath again, my emotions got the best of me and I cried. Last year at this time I was still on crutches and wasn't even on 50% weight bearing and this year I ran a 5k!! I feel so blessed!!!
Now...about that left hip of mine...yeah it is definitely letting me know that it is there. I have been in quite a bit of pain lately, and I am not happy. This is the same kind of pain the right hip had before surgery. I am scheduled to go in for an injection in two weeks and I hope it helps. Although - I am hoping for it to be some miracle shot - but really all it is doing is prolonging life before surgery. Right now I am seriously considering calling my surgeon and setting up the date to have the left PAO done. I am just not sure...on one hand I say yes - let's get this done and over with so I can move on with my life, but on the other hand I say no - because I am not sure I am mentally prepared to do it again. I have a very tough decision to make right now. All I know for sure is that I want to keep running - I love it!!!
Tuesday, October 6, 2009
All I can do is fight!!!!
It is hard to believe that at this time last year I was sitting in the hospital waiting for my surgeon to open my right hip back up and remove an infection. The weird thing is, my left arm is very itchy today in the spot where the first picc line was, and the scar is even raised...too weird!!
My right hip has been feeling pretty good. And I have been really testing it out lately. I have always wanted to run but either my asthma or my hips have kept me from it. As with most everything I do, I am giving this my all. I am planning on running in a Turkey Trot this year and started training. I am telling you...I really feel like my body hates me. I have been trying to go to the gym every day except Sundays. I was doing well until last week when, boom, respiratory infection!! This is the second one in a months time!! Last night was my first night back in a week. I made it through my run despite coughing and pain from the left hip. Then I met with my trainer, who kicked my butt. Today I was only feeling a little tired until now. I was sitting at my desk and started to get short of breath...back to the nebulizer treatments I go...
As I mentioned...the left hip (non-operated side) is starting to show it's bad side. And quite honestly I am surprised it took this long for the pain to get more frequent. For the last couple weeks I have been dealing with pain in the left hip during any activity. Last night was the worst I have had. I was running on the treadmill and I felt a familiar pain. I had this pain once before in my right hip...this is the pain that was the beginning of the end of pre-op life. This is the pain that started the series of injections that slowly started to lose their effectiveness. And now, here I am with this pain in the left hip!! I know I need to call and schedule the injection...I just am so not ready to be there again!! Not to mention I have another surgery of a different kind in my very near future...
Within the next month or so I will be having thyroid surgery. Right before my 3rd right hip surgery, I had an appointment with my family doctor. While talking I mentioned that I had stopped taking my Synthroid (my medicine for my hypo-thyroid). He looked at me with the "What??? Why would you do that??" look. I told him that I didn't feel any different whether I was on or off the medicine. This prompted him to feel my thyroid. The look that came over his face was not one I was expecting. His eyes got very big and he immediately ordered tests. While I was recovery from the 3rd right hip surgery I went through a series of tests. The tests revealed that I have a quite large nodule on my thyroid. I had a needle biopsy and met with an endocrinologist. We talked about various options regarding this nodule. My concern...the "c" word...cancer!! There is a chance that due to the size of the nodule the needle biopsy was not able to get samples from all of the nodule and that there could be cancer. I have decided that I really don't want to take that chance and I am having it removed. They will be removing half of my thyroid and the nodule. While I am still under in surgery, they will examine the nodule for cancer. If there is any cancer, they will remove my entire thyroid and I will be treated for cancer. I can not tell you how scared I am of this!!! I am praying very hard and trying to think only happy thoughts.
I am a fighter!!! I always have been and I always will be!!! But sometimes, I feel like my brain and my body don't see eye to eye.
Anyway, to some it up
My right hip has been feeling pretty good. And I have been really testing it out lately. I have always wanted to run but either my asthma or my hips have kept me from it. As with most everything I do, I am giving this my all. I am planning on running in a Turkey Trot this year and started training. I am telling you...I really feel like my body hates me. I have been trying to go to the gym every day except Sundays. I was doing well until last week when, boom, respiratory infection!! This is the second one in a months time!! Last night was my first night back in a week. I made it through my run despite coughing and pain from the left hip. Then I met with my trainer, who kicked my butt. Today I was only feeling a little tired until now. I was sitting at my desk and started to get short of breath...back to the nebulizer treatments I go...
As I mentioned...the left hip (non-operated side) is starting to show it's bad side. And quite honestly I am surprised it took this long for the pain to get more frequent. For the last couple weeks I have been dealing with pain in the left hip during any activity. Last night was the worst I have had. I was running on the treadmill and I felt a familiar pain. I had this pain once before in my right hip...this is the pain that was the beginning of the end of pre-op life. This is the pain that started the series of injections that slowly started to lose their effectiveness. And now, here I am with this pain in the left hip!! I know I need to call and schedule the injection...I just am so not ready to be there again!! Not to mention I have another surgery of a different kind in my very near future...
Within the next month or so I will be having thyroid surgery. Right before my 3rd right hip surgery, I had an appointment with my family doctor. While talking I mentioned that I had stopped taking my Synthroid (my medicine for my hypo-thyroid). He looked at me with the "What??? Why would you do that??" look. I told him that I didn't feel any different whether I was on or off the medicine. This prompted him to feel my thyroid. The look that came over his face was not one I was expecting. His eyes got very big and he immediately ordered tests. While I was recovery from the 3rd right hip surgery I went through a series of tests. The tests revealed that I have a quite large nodule on my thyroid. I had a needle biopsy and met with an endocrinologist. We talked about various options regarding this nodule. My concern...the "c" word...cancer!! There is a chance that due to the size of the nodule the needle biopsy was not able to get samples from all of the nodule and that there could be cancer. I have decided that I really don't want to take that chance and I am having it removed. They will be removing half of my thyroid and the nodule. While I am still under in surgery, they will examine the nodule for cancer. If there is any cancer, they will remove my entire thyroid and I will be treated for cancer. I can not tell you how scared I am of this!!! I am praying very hard and trying to think only happy thoughts.
I am a fighter!!! I always have been and I always will be!!! But sometimes, I feel like my brain and my body don't see eye to eye.
Anyway, to some it up
- The right hip feels pretty good
- The left hip is ready to start receiving injections (even though I am not)
- The respiratory system is junk and I wish I could get a new one
- The thyroid and it's nodule friend must come out...I will not let cancer in!!!
Wednesday, September 16, 2009
1 YEAR POST-OP!!!!
WOW - what a difference a year makes!! I am officially one year out from my original PAO surgery. This past year has been full of hope, excitement, sadness, setbacks, and happiness all rolled into one. There were times where I lost all hope of ever being the same person I was before hip dysplasia - but then the good days started to out weigh the bad. I can with out a doubt say that I am a stronger person now, physically and mentally, then I have ever been before! I had a post in the works about how mentally taxing this surgery is, but that is for another day. Today I celebrate that I have made it through the year!!
Let's take a look at then and now...
Then: Pre-op I could not walk or do any activity without falling down
Now: I am increasing my activity level and time every day, still a little pain (but I have had more surgeries then most), but overall feeling pretty good.
Then: Post-op, I could not move my leg at all. And I remember thinking 'Will I ever walk again?' As it was not very convincing to be able to see your leg, so you know it's there, but not be able to feel or move it.
Now: The doctor can not believe how flexible I am. It's a little weird to have him and his residents move my leg and hip around and say things like "Wow!! That is impressive!" I still have an area on my upper front and outer thigh that is still diminished for sensation. But, as far as I'm concerned, that is a small price to pay for where I am now.
Then: I sat in my "sitting room" that my loving husband set up for me. I would work from home, knit, read, and watch tv, and then get so bored!! All I wanted to do was be able to be part of the world again. I felt so left out as my husband and friend left for State College on the weekends to work security at the PSU games.
Now: I never stop running!!! I am either at work, the gym, tennis courts, or a bike trail!!!! I love every minute of it, but there is a little part of me that would love to sit - but I will save that for the Left PAO. I am now heading up to State College with the guys to go to the games or just tailgate.
I'm not 100% done recovering yet, but my latest surgery was in June. It was not as major as the original, but it set me back a little. Reflecting on the last year I feel so blessed to be where I am!! I see the light at the end of this tunnel and that makes me very happy.
I had my 10 week post-op appointment for the surgery in June on August 10th. Dr. Goodspeed was so ecstatic with my progress. He told me that after everything that I have been through with this surgery, the pain that I have endured, and my high tolerance for the pain, I will breeze through childbirth. I asked for that in writing :-). When we were finished with the appointment he said that since I was doing so well, we would consider the appointment my 1 year post-op as well. I don't have to go back unless I need to. He asked me to call or email him periodically to let him know how I am doing. That is the least I can do for the person who changed my life!!
YAY for 1 year!!!!
Let's take a look at then and now...
Then: Pre-op I could not walk or do any activity without falling down
Now: I am increasing my activity level and time every day, still a little pain (but I have had more surgeries then most), but overall feeling pretty good.
Then: Post-op, I could not move my leg at all. And I remember thinking 'Will I ever walk again?' As it was not very convincing to be able to see your leg, so you know it's there, but not be able to feel or move it.
Now: The doctor can not believe how flexible I am. It's a little weird to have him and his residents move my leg and hip around and say things like "Wow!! That is impressive!" I still have an area on my upper front and outer thigh that is still diminished for sensation. But, as far as I'm concerned, that is a small price to pay for where I am now.
Then: I sat in my "sitting room" that my loving husband set up for me. I would work from home, knit, read, and watch tv, and then get so bored!! All I wanted to do was be able to be part of the world again. I felt so left out as my husband and friend left for State College on the weekends to work security at the PSU games.
Now: I never stop running!!! I am either at work, the gym, tennis courts, or a bike trail!!!! I love every minute of it, but there is a little part of me that would love to sit - but I will save that for the Left PAO. I am now heading up to State College with the guys to go to the games or just tailgate.
I'm not 100% done recovering yet, but my latest surgery was in June. It was not as major as the original, but it set me back a little. Reflecting on the last year I feel so blessed to be where I am!! I see the light at the end of this tunnel and that makes me very happy.
I had my 10 week post-op appointment for the surgery in June on August 10th. Dr. Goodspeed was so ecstatic with my progress. He told me that after everything that I have been through with this surgery, the pain that I have endured, and my high tolerance for the pain, I will breeze through childbirth. I asked for that in writing :-). When we were finished with the appointment he said that since I was doing so well, we would consider the appointment my 1 year post-op as well. I don't have to go back unless I need to. He asked me to call or email him periodically to let him know how I am doing. That is the least I can do for the person who changed my life!!
YAY for 1 year!!!!
Tuesday, June 23, 2009
Two weeks post-op...
Update...
I am now 17 days out from my 3rd and hopefully final surgery on my right hip. As I stated in my last post, the doctor feels very confident in a full recovery now - as do I!! I haven't had a lot of pain with this surgery, which no pain is always a good thing. I have even been to the gym quite a bit. Last night I did 9.25 miles on the bike in 35 minutes with a resistance level of 7!! Not bad considering everything!! I can not wait to get back to running, mountain biking, and tennis again.
I had my 2 week post-op on Thursday, June 18th. The doctor is very pleased with my progress and could not believe that I was walking without a cane! He reiterated just how large the heterotopic bone growth was. He showed me on the x-rays that it was actually covering the head of my femur bone! Holy crap - no wonder I could hardly lift my leg without getting pain and the snapping feeling. He said he could not believe how fast my body grows and repairs bone. He had never told me this before - but he said that at my 6 weeks post-op for the PAO the bone fusion was further than normal. He said that if I were to ever break my femur bone, it would probably heal very, very quickly. When I told my mom this her response was, "Renee, this is not a challenge!!"
I asked the doctor when I could start running again. His eyes got really big and he said "Hmm, I have never had anyone ask me that at 2 weeks post-op." He said that I could start trying to do everything that I want to do. I have to "practice driving" for a little while though, as that movement from gas to brake is still pretty weak. As it is, my husband is being very protective and is refusing to let me drive to work yet, so he has been bringing me to and from work. I could get use to having a chauffeur!
The only thing I am "dealing" with now is tiredness (gotta get back into the routine) and itching. The itching is driving me crazy!!! The doc put me on Indomethacin after this surgery as a precautionary measure to heed off heterotopic bone growth again. I finished up the medicine on Saturday, but am still having problems itching. My body is starting to look like a scratching post for cats! I wake up in the middle of the night because I am so itchy. I am hoping that the medicine soon works out of my system and I stop looking like a dog with fleas.
I start back to PT tomorrow. I am looking forward to it since now with the extra bone removed, I should be able to lift my leg and do the exercises. Plus my physical therapist have become friends - it's hard not to when you see this person 2-3 times a week. Plus I think you should at least be nice with the person who has to touch your bum (to feel the muscles).
I feel a lot of hope from this surgery. I truly feel that this will be the last chapter in the right hip PAO!!!
I am now 17 days out from my 3rd and hopefully final surgery on my right hip. As I stated in my last post, the doctor feels very confident in a full recovery now - as do I!! I haven't had a lot of pain with this surgery, which no pain is always a good thing. I have even been to the gym quite a bit. Last night I did 9.25 miles on the bike in 35 minutes with a resistance level of 7!! Not bad considering everything!! I can not wait to get back to running, mountain biking, and tennis again.
I had my 2 week post-op on Thursday, June 18th. The doctor is very pleased with my progress and could not believe that I was walking without a cane! He reiterated just how large the heterotopic bone growth was. He showed me on the x-rays that it was actually covering the head of my femur bone! Holy crap - no wonder I could hardly lift my leg without getting pain and the snapping feeling. He said he could not believe how fast my body grows and repairs bone. He had never told me this before - but he said that at my 6 weeks post-op for the PAO the bone fusion was further than normal. He said that if I were to ever break my femur bone, it would probably heal very, very quickly. When I told my mom this her response was, "Renee, this is not a challenge!!"
I asked the doctor when I could start running again. His eyes got really big and he said "Hmm, I have never had anyone ask me that at 2 weeks post-op." He said that I could start trying to do everything that I want to do. I have to "practice driving" for a little while though, as that movement from gas to brake is still pretty weak. As it is, my husband is being very protective and is refusing to let me drive to work yet, so he has been bringing me to and from work. I could get use to having a chauffeur!
The only thing I am "dealing" with now is tiredness (gotta get back into the routine) and itching. The itching is driving me crazy!!! The doc put me on Indomethacin after this surgery as a precautionary measure to heed off heterotopic bone growth again. I finished up the medicine on Saturday, but am still having problems itching. My body is starting to look like a scratching post for cats! I wake up in the middle of the night because I am so itchy. I am hoping that the medicine soon works out of my system and I stop looking like a dog with fleas.
I start back to PT tomorrow. I am looking forward to it since now with the extra bone removed, I should be able to lift my leg and do the exercises. Plus my physical therapist have become friends - it's hard not to when you see this person 2-3 times a week. Plus I think you should at least be nice with the person who has to touch your bum (to feel the muscles).
I feel a lot of hope from this surgery. I truly feel that this will be the last chapter in the right hip PAO!!!
Monday, June 8, 2009
3rd Times a Charm...
I am home from the hospital. I came home Saturday morning. I am hoping that the third time is a charm and that is was my last surgery for the right hip. The doctor said that he pulled a piece of "bone" (heterotopic - scar tissue formed into bone) from me that was a little larger than his thumb. Let me tell you - he has chunky fingers. He said he was very surprised at just how large this bone was and feels that it was the cause of me not getting fully recovered and all of my pain. Wow!!! What a relief to hear that - I can't wait to start PT - to really test things out.
I am off of work for two weeks, although I will be working from home. This recovery it already a lot different from the first and second surgeries. I am able to be full weight bearing and I cam walking around the house unassisted. It feels so nice to be able to walk around the house and do the stairs. Since it is June and the weather is gorgeous, I am taking advantage of sitting outside. This is totally different from last time when I couldn't do the steps and was confined to the spare room that Doug made into a sitting room for me.
This is where I am recouping today. I am checking emails from work, resting, and doing a little knitting. I am pretty sore still. I have a huge bandage with at least an inch of gauze packed in it over my entire right hip. I am to leave that on for 5 days. I can't wait until Wednesday when I can remove it - it is so itchy.
I feel pretty good about the recovery from this one already. The doctor had me start on the stationary bike one day after my surgery to keep things moving. It is so funny to go to the gym and see the looks I get for walking in there with a cane. I seriously want to lift my shorts leg and say - look I just had surgery, so please stop starring. I requested to get my hardware from my hip. The doctor said I should receive it in 2 weeks as it has to go through pathology. That should be interesting to see the 5 screws that held me together for nine months.
Thank you to everyone for you prayers, well wishes, and good thoughts as I went through surgery. Now it is time to recover and close this chapter!!
I am off of work for two weeks, although I will be working from home. This recovery it already a lot different from the first and second surgeries. I am able to be full weight bearing and I cam walking around the house unassisted. It feels so nice to be able to walk around the house and do the stairs. Since it is June and the weather is gorgeous, I am taking advantage of sitting outside. This is totally different from last time when I couldn't do the steps and was confined to the spare room that Doug made into a sitting room for me.
This is where I am recouping today. I am checking emails from work, resting, and doing a little knitting. I am pretty sore still. I have a huge bandage with at least an inch of gauze packed in it over my entire right hip. I am to leave that on for 5 days. I can't wait until Wednesday when I can remove it - it is so itchy.
I feel pretty good about the recovery from this one already. The doctor had me start on the stationary bike one day after my surgery to keep things moving. It is so funny to go to the gym and see the looks I get for walking in there with a cane. I seriously want to lift my shorts leg and say - look I just had surgery, so please stop starring. I requested to get my hardware from my hip. The doctor said I should receive it in 2 weeks as it has to go through pathology. That should be interesting to see the 5 screws that held me together for nine months.
Thank you to everyone for you prayers, well wishes, and good thoughts as I went through surgery. Now it is time to recover and close this chapter!!
Monday, June 1, 2009
New Surgery Date
I went to the surgeons last Thursday for my pre-op appointment. You know pre-op for the June 26th Surgery, right? Wrong! It turns out that my surgeon has to have hip surgery (ironic I know). His surgery is on June 20th. There is no way he would be able to perform my surgery just six days after his own! A lot of his surgeries are very time consuming, so they are all pushed back until July - September. My surgery is only three hours long and the doctor wants to get this hardware out because of the post-op infection I had so they wanted to squeeze me in before his surgery. My new surgery date is Friday, June 5th!!! AHHHH - that's right, this week!! I am freaking out a little. I had so many things planned between now and June 26th that I have had to cancel.
For this 3rd and hopefully final surgery on my right hip they are going to be removing the hardware, doing a scope to fix a possible labrum tear, and removing a heterotopic ossification.
Heterotopic ossification — Heterotopic ossification (HO) is a process by which the soft tissues around the hip harden into bone. This complication is more common in males than in females, and more often affects patients with other muscle or bone conditions. Patients with HO may experience hip stiffness, or may feel no discomfort at all. Patients who are known to be at high risk for HO may be given medications or radiation therapy after surgery to prevent HO from occurring. Borrowed from: http://www.uptodate.com/patients/content/topic.do?topicKey=~l/K..Sw6LW_v63G
If you have read my previous posts, you know that the doctors thought that I had a snapping Psoas tendon. However, the ultrasound and x-rays reviled that the muscle and tendons are getting "caught" on this extra piece of bone. Boy, I'll tell you if it was going to go wrong - I think it has with this RPAO. I really hope that my LPAO won't have so many complications!!!
So these next four days are going to be pretty busy trying to to prepare for this surgery!!! Wish me luck!!!
For this 3rd and hopefully final surgery on my right hip they are going to be removing the hardware, doing a scope to fix a possible labrum tear, and removing a heterotopic ossification.
Heterotopic ossification — Heterotopic ossification (HO) is a process by which the soft tissues around the hip harden into bone. This complication is more common in males than in females, and more often affects patients with other muscle or bone conditions. Patients with HO may experience hip stiffness, or may feel no discomfort at all. Patients who are known to be at high risk for HO may be given medications or radiation therapy after surgery to prevent HO from occurring. Borrowed from: http://www.uptodate.com/patients/content/topic.do?topicKey=~l/K..Sw6LW_v63G
If you have read my previous posts, you know that the doctors thought that I had a snapping Psoas tendon. However, the ultrasound and x-rays reviled that the muscle and tendons are getting "caught" on this extra piece of bone. Boy, I'll tell you if it was going to go wrong - I think it has with this RPAO. I really hope that my LPAO won't have so many complications!!!
So these next four days are going to be pretty busy trying to to prepare for this surgery!!! Wish me luck!!!
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