TERRI’S SISTERHOOD OF THE TRAVELING TA TA’S and YA YA'S

NEVER GIVE UP, NEVER SURRENDER!

July through August 2014 Archive

Last Updated:  09/04/2014 10:38 AM

Done in reverse chronicle order.  New entries on top, older on the bottom.

August 28, 2014

We were at Moffitt this am (where else?). Xray and seeing orthopedic surgeon. My neurologist released me, but my ortho seems to think my symptoms are still suggestive of back involvement. He did give me a cortisone shot in my hip to see if it helps the bursitis pain. He says that my back is still healing from surgery and let's wait another three weeks. I'll have an MRI scheduled a few days before and will be reevaluated by him on 9/22. Then we'll proceed with surgery. He hopes the more healing that occurs will help to narrow down whether all of the pain is from the tumor or if there's an additional contributor, like there isn't more back involvement. Once he can narrow down that it is only the known factors, he can determine how high up the leg comes off. I like that he's in no hurry and is looking at this to fix my pain and not add to my problems.

I'm still in bed mostly, though my pain seems to be improving. Very slowly. I am doing better with taking a shower on the shower chair, but I have to move quickly as the pain builds fast. It takes a lot out of me. I cut back on my meds a little. I tried to do more, but the pain increased and I had to go back up to the higher dose. Overall, it's still less medication than when I first got out of the hospital. I can sit for, sometimes 5 minutes, sometimes 30, a few times a day. I don't seem to be squirming as much either. I jump from laying on sofas to exam tables all over Moffitt lol. Third floor Ortho has my vote for most comfortable sofa in Moffitt in the consultation room. Shhhh, I don't want this to get around lol.

Haven't crocheted in over a month. I read and sleep mostly. Amazingly, I didn't gain any weight with all this bed rest. I lost 3 lbs! I understand this is because narcotic meds also dull your appetite.

My pain meds are kicking in. Not to mention my morning at Moffitt. Nap time!

August 25, 2014

I have to tell you how fortunate I am to have Bill at my side in all of this illness and pain. He's such a great guy! I'm so very lucky to have him. I wouldn't have made it this far without him standing tall by me. He takes care of everything, including cooking and helping me with personal care. He brings me food, takes me to doctor's appointments, keeps track of questions and answers. Bill also monitors my medications, and soothes me with words and his touch when pills don't help the pain. He keeps me going every day and always with a smile on his face. He's my reason for fighting breast cancer and all my pain.

Everyone tells me I am their hero. I don't associate with being a hero. A hero, to me, is a veteran or casualty of a war. Someone who saves someone's life. A fireman. A policeman. That doesn't fit me. Bill is my HERO. He is a veteran and causality of the war on breast cancer. He saves my life every day. I love you Bill. Thank you for being here with me.

August 21, 2014

Well it's been determined that much of my pain in my leg is tumor related. I feel less pain in my back after my surgery, but my hip and leg pain is worse. Right now I'm mostly bedbound, laying on left side to keep pressure off of leg tumor. I'm not even able to sit up to eat at the moment. For over two weeks now Bill has been bringing my meals to bed. I'm also still having issues with tumor fever.

I was supposed to see my orthopedic physician this past Monday to go over all aspects of leg amputation. Unfortunately I was in too much pain to sit and comfortably absorb what he was discussing. It would have been a waste of time on his part. I was too out of it to process pros and cons, recovery, etc. On Tuesday I did get my staples out. I now lay down in back seat to travel. Sitting in the car is out of the question too right now. I also have to plan my medication so I'm in the least pain that I can be while traveling.

I've been rescheduled for 9/11 with ortho but my neurologist did put in a request that he see me sooner.

I truly hope amputation is the way to go, but can't fathom living with the pain I have now. I'm ready to chew my leg off from the pain ;-) Good news is I'm not limber enough to accomplish that!

Thanks for all the well wishes! Hopefully the next news is better than this.

August 12, 2014

OK, radiation is done - checked.
Back surgery is done (8/4) - check. Still in recovery for that.

Meanwhile, I was in St. Joe's ER last night for multiple pain issues.

The best way I can describe it is multiple pains in the back/right leg, hip, and foot pain.

    Low stabbing sharp back pain from surgery.
    Aching hip pain from bursitis and where rod hardware, screws, and rod all come together.
    Deep tissue/bone pain in thigh from radiation.
    Surface burning - like pain on top and bottom of thigh from radiation.    
    Calf pain, something like a muscle cramp which I guess is due to my gait.
    Some sciatica pain pain due from surgery, which should resolve in a few weeks. Some worsening neuropathy pain on

    outside of foot and coming around my ankle.

So they adjusted my pain medications and would like me to set up an appointment for pain management. It's hard to differentiate which pain is from what, especially when you have multiple pain sites.

I'm on my Kindle and do check my emails but don't have the strength to type multiple responses. Just don't worry if you don't hear from me. No news is good news;-)

August 11, 2014

Miserable unrelenting pain. I can barely walk or stand on that leg. I probably should have waited another few weeks until the radiation got better, but they assured me it wouldn't matter. I have pain through the top of my quad muscle, and also on the back of my thigh where they radiated every day. These are the areas that got radiation daily. The surgery is causing sciatica and hip pain with mild back pain. The tumor is causing thigh/leg pain. It's painful to stand or sit but it got mildly better Tuesday and Wednesday. Now, it's worse. Called surgeon in the middle of the night. He increased, doubled my pain meds. This should help, but will knock me on my butt. He would rather not admit me because it exposes me to sick people and my immunity is already low.  We do see the surgeon tomorrow.  We'll see what happens next.

I sleep much of the time with muscle relaxers and pain meds. I guess given a choice, being unconscious is better ;-)

To add insult to injury, Bill now has a temperature n sinus infection. Poor guy can't catch a break. The good news is if I'm unconscious, I'm easier to care for :-)

August 6, 2014

My back/leg is very painful. I'm OK in bed in fetal position, but everything else hurts lol. Better than last night or this morning so I'm trying to remain positive. Mostly sleeping due to meds, muscle relaxant, long acting and breakthrough pain. I told Bill to keep the break thru coming until further notice ;-) I'm surprised I can type lol.

Laying in bed. Can't sit just yet because of sciatica pain too, which is because the doctor aggregated the nerves during the procedure. Hopefully with each day that passes by it should feel better. I do very minor leg exercises to keep blood clots from forming, but that's the height of my moving around. Good thing my Kindle is full of magazines and books lol!

Just stopped typing for a few minutes for a slow walk from bedroom, living room and bathroom circuit. Did OK. Slow and steady!

Thanks for all the well wishes and good thoughts!

August 5, 2014

Terri is home and resting somewhat comfortably. 

August 4, 2014

The doctor just told me that the surgery went well.  She'll be in recovery for a bit, then will stay overnight.

August 2, 2014

A special thank you to Kim at Dillards, Mary at Sephora and Sandy at Macy´s!  Thank you for my special pick-me-up's!  Nothing does it for me like they do lol!  See you next year ;-)

August 1, 2014

My surgery is pretty late in the day on Monday, 2:45PM and the surgery is roughly 2 hrs long.  By the time I'm in my room and settled to where Bill is comfortable leaving me, it will probably be late.  Bill will post something on the webpage.  Check there for updates. 

I should be in the hospital 1 night, but because my surgery is at this site for a second time, they expect scar tissue, which usually means a tear and leakage of spinal fluid.  This means I stay flat on my back for 24 hours and an additional day in the hospital.  There is a high probability that I'll have to stay the two nights.

July 25, 2014

It's official! I lost count of how many surgeries I've had!

We saw the neurologist Tuesday am. Sure enough, the disc that was operated on 2 years ago is bulging quite a bit.  My surgery date is 8/4, late in the afternoon. If I wasn't on a lot of pain meds for my leg I'd probably be very miserable by now. I feel pain from it but it's not as excruciating as it was two years ago, although with each radiation treatment and laying still on the table, it feels more tender.  I have to get that taken care of before my leg surgery along with shots in my hip to help with bursitis there. These have to be done to make rebounding from the leg amputation easier. I finish radiation first, back surgery, recover from that with physical therapy, hip shot,  if all goes well and if everyone of my doctor's feels that's my best odds, leg amputation then more physical therapy. After that I'm golden. lol!

Of course, with the second surgery for my back, I already have scar tissue there so I'm at a bigger risk of complications. Higher chance of spinal fluid leaking, which means I lay flat for 24 hrs after surgery or experience the mother of all headaches. Also if the fluid doesn't stop leaking, another surgery to fix it. A chance of drop foot, but with the leg coming off that doesn't matter. 1-2 nights in the hospital n an initial 2 weeks of healing then physical therapy.  THEN we can plan on the leg amputation.

I'll probably also need back surgery more often. This bulge is probably worse because of my messed up gait from the tumor. Surgeon said it will probably be worse after I get prosthetic. Happy, happy, joy, joy!

July 21, 2014

It was hard adjusting to the thought of losing my leg but I'm choosing to look at the pros instead of the cons like:

• End of tumor fevers

• Less pain and pain meds

• I can get a tattoo on my prosthesis without worrying about hepatitis I'll weigh less!!

• I'll get twice as much use out of socks

• 1/2 price pedicure

• Better story with shark attack

• Not having to get tumor fitted for a bra (it's a double D now) 

July 11, 2014

We saw Radiation yesterday.  We now have a better understanding of why they wanted us to see about radiation therapy.  While the risks are low, since I’ve already had this treatment once, the possible benefits include some pain relief and killing some of the cancer cells that may be closer to the surgical site.  While there were question marks next to each of the pros and cons, there’s really nothing to lose by trying it.  I still have my appointment with Ortho next month and am still interested in discussing amputation further.  I go next week for simulation, then start radiation the following week for 10 to 13 days.

The Ortho surgeon called yesterday evening to confirm what he read in the notes from Radiation.  He also already got the results of the low back MRI – the same disc that I had surgery on in 2010 has another bulge.  He’s referring me to Moffitt’s Neuro team to see if this would be an epidural or another back surgery.  This will have to be resolved before we do anything with the leg.

I also have bursitis/arthritis in the same hip, which I hopefully can benefit from steroid shots there. This will also have to be addressed before amputation is considered. The radiologist has high expectations that radiation alone will solve my pain problem, but my other doctors and I do not hold much hope in that scenario. First, because radiation did not help last year to shrink the tumor. Second, it is not a permanent fix. It might work-if at all-for weeks/months, but not years. I'm looking for a more permanent fix. Right now, I have no quality of life. My days are spent with my leg elevated and my pain levels are moderate to high, with my pain gradually increasing over the past six months. I am looking for long-term help, both with pain and mobility. If the leg is amputated, granted I will have a long road to recovery and will have to work my tail feathers to get to where I am now. Along with lower pain and a prosthesis, my goal is to be able to empty the dishwasher, and possibly be able to cook and help Bill around the house. It would help me to ride in the car for longer periods and possibly be able to fly again. I can't fly now because of lymphedema in that leg and the need to elevate it. I hope that I can even do more than that, but I don't want to get ahead of myself.

As far as my prognosis, after a tumor metastasizes (spreads), it usually, in the case of breast cancer, spreads to the patient's liver, brain or lung within a year or two. I do not show any other spread. My cancer to the muscle is not seen often enough to be able to predict with any degree of certainty and my doctors hope that in my case, since there is no other spread yet, I can possibly exceed my prognosis of 2-5 years. There is no guarantee with this. I'm looking for long term help if I do have more time than expected and Bill and I are leaning heavily towards an amputation right now. When I see my Ortho surgeon in August, he will answer the pros and cons and hopefully confirm that I am a candidate for this surgery but at this moment he does not foresee any issues.

So you got all that lol? My ta-ta´s went out with sparkly pink pasties...I´m thinking my leg should for out with black fishnets and a garter ;-)

I am also sick, sick, sick of the breast cancer story. I have a new one! It was a shark attack! 32 foot great white off the coast of Clearwater. I was surfing (my story so work with me) and the shark attacked. First pass he got my boobs and did damage to my abdomen (have to explain the hysterectomy and other scars in that area). Second pass, he got my leg. I did gouge him in one eye and hit his nose. A pod of dolphins came and attacked the shark while the king dolphin (how did I know he was king, he wore a crown silly!), dragged me to shore by his fin and the lifeguards took it from there. By the way, when Bill and I go to the shore the king dolphin comes to say howdy ;-)

Hope all is well for everyone! Take care and Never give up, Never surrender!

July 4, 2014:

Happy July 4th Everyone!!!

June 19, 2014:

We saw the orthopedic surgeon today.  After reviewing all of the diagnostic imaging, he felt that we should revisit radiation first.  He'd like to save the leg if at all possible and amputation is still an option.  So, at this point, we're making an appointment with the Radiation Oncologist to see what he thinks.  Stay tuned...

June 10, 2014:

So everyone is aware that the chemo isn't working.  They've tried a few kinds with no positive results at all.  I know it sounds extreme but my doctors have offered me amputation of my leg and Bill and I are considering it.  I see an orthopedic at Moffitt on 6/19 to discuss it.  We have lots of questions and won't know what I'm doing until our questions are answered.  I understand their reasoning.  It's sinking in for us.  They aren't pushing me, it's my (and Bill's choice) but they do think it's the next step.  It will relieve my leg pain (but not the arthritis in my hip and my lumbar pain).  Maybe the orthopedic can help me with my hip too.

We have a lot of questions for ortho guy but if I proceed with it I can get a prosthesis and move forward.  They can't say for sure, but since they feel the cancer would have spread by now, it might improve my 2-5 yr prognosis too.  Since my cancer is rare, to be in my muscle, they really don't know how to proceed but are giving me options.  My doctors feel if they remove leg it lessens that chance of this tumor spreading.  Also lessens chance of the leg failing and me falling, causing more issues.  I can also stop chemo for now until/unless another tumor pops up.  Of course, nothing is for sure.  I can have my leg amputated and have cancer show up somewhere else.

We went to Carol's on Saturday and I've been pretty much bedridden through yesterday!  We'll see how I fare today.  If someone asked me Saturday night if I wanted my leg amputated the answer would be yes, yes, YES!  Sat in car for an hour to get to Sarasota and then back.  Felt fine in car on way down but I was in a lot of pain on the way home.  I realized in the new car we have to get a box to rest my leg on.  If my leg dangles, even for a few minutes, I get extreme pain.  Last week I almost passed out during a blood draw because my leg was dangling and they also had trouble getting my port to work. 

Came home Saturday night (should have laid down in back seat) and was close to going to ER.  Took 2 long acting and a breakthrough pain killer later when I still had pain and still taking meds round the clock.  They really knock me out.

Will keep you posted.  No news is good news.  Will have more info after ortho appointment on 6/19.  If I don't post anything on 6/19 it means more testing is being done or Bill and I are "processing" info before deciding.  Just give us a few days until we know...