Thursday's Dr Appointments

Well, I had my two f/u appointments with my primary care doctor and the orthopedic doctor. Guess I'll start with the orthro guy.

He said I can come out of the boot. Can anyone tell I'm excited? After spending the past nine weeks in a cast or that stupid boot, I'm beyond happy tonight. Have to say it feels funny wearing a shoe on my left foot. Will start PT tomorrow on the left foot also will start PT on my back too, another woo hoo

My back has been killing me from rupturing my tendon and I can't wait to get relief. The pain has been so bad I've thought at times I'd lose my mind. Anyway, back to the orthro guy, he said that I still have Achilles tendonitis in my left foot, as well as my right. He said that he can feel the calcification in the tendons on both feet. Said I'll have this problem the rest of my life. That taking prednisone puts me at a 40% higher risk of rupturing them. Get good news, then bad seems to be the way of my life.

Told me to take it easy over the next couple weeks, if I start having pain go back into the boot I say I'd rather die first. If my tendons feel NO better in 2 months I need to see them again. The fact that my baby toe and the one next to it is numb is worrisome but we will wait and see.

Primary doctor agreed to a muscle relaxer, not sure for how long or if she gave any refills. I didn't pick up the medication, it was a two hour wait at the medical center pharmacy. I'll go in I guess later today and get it. So, yeah for her giving to me, but I'll be bummed if she only gave me a few, I understand why, she worries about my breathing, but man I hurt so bad.

I need to get blood cultures done, a sinus CT, and PET/CT of my lungs. I've been having fevers, sweats, chills, and severe fatigue since August. They are worried my mediport is infected, the last time I had those symptoms it was my port that was infected. IF my port is infected it's going to cause me a HUGE problem. They will have to pull my port and my cardiac monitor out of my chest. Bacteria collects around these devices and it will just keep reinfecting me.

The big problem is I have a MASSIVE blood clot in my SVC. If they have to pull my port they may not be able to get another one in me. I've been requiring a lot of blood transfusions as of late and w/o a port I'm not sure what they will do. I've very nervous about this whole prospect, I mean I don't want an infection but I do want my symptoms to go away. Plus, we can't seem to keep my INR in range, at the moment I'm at risk of making another clot.

Rheumy and oncologist feel I may have an atypical infection in my lungs, which could cause the symptoms, but apparently these types of infections are hard DX and treat. Also, they want to keep bumping up my MTX until my liver can't handle anymore Not sure I like this plan but will have to wait and see.

Will see my oncologist next Tuesday and on Thursday I'll see the radiation oncologist who will start radiation again on the warts on my fingers. I sure hope that they can get rid of them, it worked the first time but apparently I didn't get enough radiation. However, having it again so soon, may make me lose my thumb of course I'd already asked them to surgically remove it so who cares right?

Guess that's all the news here, hubby's working and getting paid, when not sure but soon I hope. Cat is holding his own, daughter is good, but way way busy at school. If you can tolerate the shot, please remember to get your flu shots. I'm allergic to them, but the family are getting them. It's closing in on the holidays and cold and flu season with it.

Hope everyone has a great day with low pain levels, loads of energy, and just happy well feelings. If not I'm sending many prayers, positive energy, thoughts and loads of hugs your way. Love to you all and thanks for supporting me.

Hugs,
Barbara

Hi Barbara,

       Phew!!!  Both good news and some stressful news.  I am SOOOOOOOOO glad that you are out of your boot.  Hopefully, that will give your back a chance to heal.  I am so sorry to hear about your port.  Is the reason they are having trouble regulating your INR related to your diet??  When I was having trouble, they totally said it was my diet.  I consume a lot of deep greens, like kale, chard and spinach.  Once I backed off, it did help the INR stabilize.  Thankfully, I was only on the blood thinner for six months.  I was not happy watching my diet all of the time. 

On my end, stressors at work are reminding me to slow down and breathe.  I know if I don't, my body will respond in ways that I won't be happy with.  Thankfully, the GI stuff has calmed down.  Changing my diet and upping the Prednisone helped.

Take Care!!

Laura

Hey just a very quick update. Today has been pure torture for me, I have no idea what my PT did to me but my pain has been thru the roof. If you asked on a scale of 1-10 I'd say 100. I can barely move, and bending over well....

I notice around 3 am that I was having issues trying to turn on my side. When I got up at 7 the pain was unreal and barely could get to the kitchen to feed the cat and give him his medicine for the morning.

I'm still really hurting and I'm off to bed. I've got to make a trip tomorrow and it's in the car for 1hr 15 mins each way. Please say a prayer that I make it thru the day and the drive.

Hugs,
Barbara

Ouch! I hope it doesn't hurt more due to the ride.
I hate it when my back gets like that. Make sure to carry an ice pack or heat wrap to ease some of the spasms.

Hey Barbara,

I'm happy to hear the good news. Glad you got the boot off. I'm sorry to hear the blot clot though. I hope they'll figure it out so you wouldn't get any infections.

Sorry about your pain yesterday. How is it today? Hope you got through the trip okay. Keep us updated.

UA

Hey Lynnwood, Joy, Sherrie, UA, and David,

Thanks for your replies, you are all so good to me. Hey my favorite pain buddy glad you're back, I missed you and you were on my mind the whole time you were gone.

UA the blood clot is a huge problem for me as it is my second clot, so I have to remain on blood thinners the rest of my life.

As for my back pain, it's still really bad tonight and I'm really tired. I was on the road yesterday to go see my daughter at her college. Then my cat had me up very early with projectile vomiting and I think he was in terrible pain. Ended giving him some pain meds and he's kinda been off all day long. I think my buddy is getting close to needing to be put down. My daughter will be devastated and so will I. He's become my cat since she went off to college. We cuddle every morning and I'll be lost w/o him.

I'm going to head to bed as I have a very long day ahead tomorrow. I'm to see my oncologist, radiation oncologist, gyn oncologist and massage therapist. I expect to be totally wiped out by the time I get home tomorrow afternoon. At least the massage is last so I'll be relaxed on the drive home.

Will put a post in tomorrow to give an update on all the Doctors had to say. Had my CT of my sinuses done this morning so I should know if I've got an infection in there by the end of the week.

Hope everyone is having a good night, with low pain levels. I hope that you all have a great day tomorrow. May you pain be gone or at least very low. David, you and I are going to have to either Skype or call each other one of these days.

Hugs,
Barbara

Thanks, Barb. Thought of you a lot too while I was gone. Knew there was no way I could check up on you, and hoped and prayed you didn't have some kind of major event or setback.

We purposely left our cell phones in my car when we parked at the ship terminal. In a real emergency, anyone could have reached us by ship to shore phone, and we didn't want to be bothered with day to day normal calls or pay expensive roaming charges being out of the country.

And we never vacation with computers, kind of defeats the whole purpose of taking a real break. I noticed the world and the news managed to get on without me looking at it 100 times a day, lol.

They have computers onboard the ship, but someone would have to be nuts to pay 75 cents a minute to use them, not this guy. Plus was told the connections are so slow and erratic, being slower than even the old dial up lines.

Glad to be home, was probably our best vacation ever, even though we did this last year. I knew it would take its toll on me, but I would have to say it was worth it.

David

Hey Splashdancer,

Splash, to answer a couple of your questions about my Grady, he's almost 18 years old. He's had a thyroid issues for many years now. We recently learned that he has kidney disease and has anemia very bad. He also has severe arthritis in his back hips and legs. The vomiting they figure is from the kidney disease. He never brings up hair ball anymore, as he no longer grooms himself except for around his privates after using the box.

Grady's thyroid medication causes nausea so he's on priolsec and is only given 1 tsp of food at a time. I spend the whole day running giving him food when he comes and paws at me for it. Some days he doesn't eat at all, we just went through a tough time and I was giving boiled chicken to get him to eat. He's just declining and my daughter and hubby both feel it's not time yet to put him down. With me having cancer myself (I could end up like the cat) I have issues with them refusing to hear what I"m saying. I don't want Grady to suffer at all, period.

The vet gave me some liquid tramadol for him, so I'm going to try that. She said an anti inflammatory would help with the tramadol, but it can shorten the time we have with him. Needless to say, my daughter said no to this option and hubby really doesn't approve of the cat taking medication period. He's not big on humans taking medication, so this is no surprise to me. I just wish I could do more for my little cuddle buddy.

I'm glad that you have someone that can look after your cats for you. I'm such an animal lover and I'm always donating money to pet charities LOL. Drives the spouse crazy, I just can't help myself, pets (animals) always love unconditionally and are there for you. Not all humans are and I've always been more sensitive about animals.

I remember my hubby taking me to see a movie back in the 80's I think Project X where they were testing radiation exposure on chimps. The movie would show these chimps dying, I know they really weren't killing them, but the thought had me so upset I started crying. I wanted to leave the theater and he wouldn't allow it. I cried the remainder of the movie and for 3 hours afterwards at home. When we saw Dances with Wolves, well, lets say I was out the door when they went after the wolf. I just can't handle stuff like that.

I'm by far to tender in the heart when it comes to stuff like that. Commercials or shows are turned off if an animal is being hurt or dying in anyway.

Hope you are doing well and things are going good. Please let me know how you are doing and how your 4 cats are doing anytime.

Hugs,
Barbara

Yikes. Sounds like a very trying day with medical news...no fun at all!

I'm interested to see if the Valtrex helps any -- personally I'll be really surprised if it does as mouth ulcers are totally different than the oral herpes outbreaks it is designed to treat. Of course, I'm hoping it does help anyway as I had a recent reminder of what a drag a sore mouth can be.

Please try to eat something besides yogurt and ice cream!!! Maybe some cottage cheese? It has more protein and if you get the Breakstone variety with acidophiles all the probiotics will help you some. And it doesn't have the sugar like yogurt/ice cream which will give you thrush if you're leaning in that direction.

How is you gyn surgery healing? Saw you posting between appts this afternoon....maybe we'll chat soon.

Hugs.

Hey Lynn and David:

Lynn, you'll be happy to hear I had some oatmeal this morning to eat with milk. Bill just warmed me some home made bread and I pulled off the crust and just ate the middle with butter.

I'm also attempting some ice cold black grapes too. I've had several glasses of milk too. I've now managed to get four Valtrex in my system and my tongue is still burning, not sure if this is going to work or not, but I'll see. I've used the lidocaine oral rinse too. Will attempt to eat regular food tomorrow I think.

My Gyn/Oncologist gave me an all clear report, and said that my open incision is healing. That the tissue samples were non malignant and that there is no cancer in the tissue as all. He said unless I have anymore issues with my incision I can just wave at him as I pass him in the hallway. It looks like my surgery was a success and if I had any issues at a later date to please contact him.

David, I'm really trying not to give up, I know I need to keep fighting, but it's so hard to do at times. I know you understand that feeling, it just seems like I can't get a break no matter what. I promise I won't give up, but if I don't express how I truly feel I start to focus on hurtful things rather than the important stuff of wanting to fight.

I know that I really need to consider this additional radiation heavily. I was give 5 radiation treatments for a total of 2000, per my radiation oncologist at Walter Reed. I asked would the Dr at University of Maryland would know what that meant and he said yes.

According to my Dermatologist he has proof that the warts can be gotten rid of with more radiation. That he has multiple cases where it's been proven. The military radiation oncologist said he's never treated anyone for my condition and he would be willing to hear from the Dermatologist and consider things.

I will meet with the radiation oncologist at University of Maryland and his colleague. I need to at least hear what they have to say. I truly can no longer handle my thumbs, I swear one night I'm gonna have a few shots and just hack the darn things off in my kitchen. Bill will have a heck of a bloody mess to deal with, as I'm on coumadin, so I kinda bleed heavily LOL. I literally can not use my thumbs for anything expect to grasp things.

I would be very interested in reading this book that you're reading. It certainly sounds interesting, a friend of mine recently sent me a book by Philip Yancey, it's called "Where Is God When It Hurts?. I've yet to read the book but I'm going to read it soon. She also sent this exact same book to my daughter, as she's had trouble with dealing with my suffering in pain. She's very resentful and upset with my Doctors, because they don't keep me comfortable.

I hope that you're having a good evening. I saw your post on the CP forum about your new medication and that it was very sedating to you. I hope that it continues to cover your pain, and I'm not sure whether I hope that the sedating effect wears off or not. I know that you do not sleep well and if it's sedating then maybe you'll get more sleep. Guess it depends on how much you need to do during the day.

I hope that you both had a good day and I hope that you both are feeling as good as you possibly can. Lynn maybe we could talk on Friday. I've got a medical appointment at 11am but I should be home by 2 or so. David we're going to Skype one of these days. Hope you both sleep well tonight. Thanks for your support and understanding.

Love,
Barbara

Hey Barbs,

Now catching up. Haven't been on for a few days.

I understand about the blood thinners. My father is a heart case and had to use Plavix and Aspirin to survive.

I'm glad to hear about the results are good and the incision is healing up now. Let us know how things go with the oncologist at the university when you meet with them.

Hope you will get some pain relief.

UA