Good Report

Nothing has really changed from the last post, it's still hot, hot, hot as far as that's goes. Oh my goodness we sure do need some rain, the parts of Florida that has been flooded from the results of Hurricane Donna I believe would probably like to share with anyone. We would gladly take a few inches off their hands, but more likely the good people in Colorado & Colorado Springs need it so bad to put out some of these fires.

Clay & I made the trip to Little Rock on Monday, we left at 6:45 and got back home about 8 that night, sure makes for a long day, then with this heat it just takes everything out of you. It was 112* in Little Rock that day, way, way too hot. I did get a good report from Dr. Barlogie though so I guess it was worth the trip. All the test  that I had done the week before came back good, clean I guess you would say, seems like he usually rushes you through but we had alot of questions this time & he was very good to spend the time with us to answer all of our questions & concerns. As I had talked about in the last post about my port line having a leak or hole in the tubing, Dr. Barlogie said it wouldn't be a problem having the porta gram done to find out whats going on with it. The contrast they put in is a very small amount & therefore it wouldn't harm my kidneys. We also discussed the Sub-Q chemo method, this wouldn't have to go thru my line it would be a shot instead, so another thing not needing my port for. Dr. B also thought I could do without the liter of fluid I get each week along with the chemo, so again no port needed there. I do take a bone strengthening drug that is through my port but it is only every two months, I think I could stand an IV every other month. So I will talk to Dr. Rosenfeld next week when I see him, when I go to WRMC to have the Portagram done if it has a leak or tear, hole or whatever they will probably take it out, either replace it or maybe not. I'm thinking not, but then I think while I am out maybe they should just replace it because what if I need it down the road aways, it would be much easier to do it now that to have to go back in. You know usually when you get good news, there's alot of times you get a little bad news to go along with it. So I have talked alot about my left leg, foot with the swelling and all, it has been pretty bad lately, I actually rode in the back seat most of the way to Little Rock & back so I could keep my foot up trying to keep the swelling down. I think it was Saturday my leg started hurting some then Sunday afternoon & evening it got alot worse, a clot had crossed my mind but not so much. By the time we got home Monday night I told Clay I think I may have a blood clot, I was hurting so bad. Tuesday morning I was scheduled for a massage at 9, well I knew if there was even a thought of a clot that wasn't going to happen, so I went in & I had a nurse eval, saw the APN, had and ultrasound done & waited for the results. Indeed I do have a clot in my groin area, on Tuesday there was really alot of pain involved. My leg felt like I had weights strapped to it, not to mention the pain with it. I got a shot in the stomach & pick up the prescription for 30 more shots to be given each day. So this being said I have put the portagram on the back burner for now, when you go in the hospital for surgery no matter how big or small you try to prevent blood clots so you sure don't want to go in with one. So like I said you always get a little bad with the good or a little good with the bad. I think on the most part we did get good news, these 2 little things are again just a couple of bumps in the road, hey and living in NW Arkansas there are always bumps in the road or at least construction going on. But the best news of all is that when I go back in 4 months Dr. Barlogie said he wasn't ordering a bone marrow biopsy!!!!! WooHoo!!!! Clay & I both looked at each other then looked at him like he was crazy but a good crazy. He just ordered an MRI & blood work. Can't wait, how awesome is that. I guess the last thing, he let me start taking a very low dose of water pills for the swelling/fluid in my leg/foot, I will just take one every other day but its crazy I don't know if they work that fast or not but my foot has not been swollen today at all. I took the pill yesterday so we will see, I hope they keep the fluid down & out. 

So I think I surely covered everything, for the most part I think our visit was very productive this time, as I said I did ask Dr. B about the swelling & water pills but did not mention the pain in my leg & my worries, I knew I could get it handled at HOG in a decent amount of time. He would have ordered me an ultrasound & we would have been there till midnight at least. I feel like I get very good care at HOG, love the doctors, nurses & all the staff there.

Hot, Hot, Hot

Oh my goodness it is hot, but sounds like it will even be hotter this weekend with no rain in sight. Well we made the trip to Little Rock Thursday & Friday of last week, Pam Neal was my chauffeur this trip. We really didn't do much but we did have a nice dinner, I was having a Pet Scan the first thing Friday morning so I was limited to what I could eat. I did have a really good steak & some yummy grilled veggies & green beans. That is my idea of a good meal, even though I couldn't have bread or sweet tea I survived. We headed to the hospital early Friday morning, needed to be there at 7:30 for paperwork & the Pet Scan, this is usually the longest test I have since it lasts two hours. Everything else was just scheduled one right after the other which is nice, I don't like alot of down time I just like to get it all done & head back home.  Things went pretty smooth of course until we got to the bone marrow biopsy, not that it didn't gone smooth it's just that it's painful to say the least. I feel like she did a decent job, there is pain no matter what.  This was the last thing on my schedule so after this we headed home, it was 3:30 & hadn't had lunch, we pulled through Chick Fil A & just ate in the car & headed toward Fayetteville. Now with a few days behind me I can say I'm better, still a little sore but not like I was, I had alot of pain with this biopsy. I know each time I have one it gets harder & harder to find a place to pull bone, they even rotate left side to right side. I did ask the question does the bone ever grow back? It does but it can take about a year, wow, that's a long time. Now on to my port issue, or the tubing actually, my port itself is fine, it's great they have no problem with it. As I had talked about in my last post it is the upper line that probably has a leak of some kind in it. I have the pain in my neck & around the tube area but just every other week, they did start me on antibiotic this time, just in case there was some infection. They were going to set me up to have a portagram but they have to use dye, due to my kidneys I can't have the contrast. So I am suppose to discuss this with Dr. Barlogie next week, they may want to take my port out & put another one in or try to do an IV each time, well due to all the chemo I don't think they will have much luck with that, my veins are about shot. I have had several calls from HOG today trying to come up with a plan that will work the best, I really don't want to have it taken out and another put back in, at least at Little Rock because that is an extremely painful process. When I had mine surgically put in I really didn't know any different, I was aware of everything with just a little numbing shot, but I felt most everything. Up here you really don't even know you had it put in, you have a little sleep med and then its all over, that's the way to go. So this time next week or when I see Dr. Rosenfeld the next week maybe we can come up with something that will work.  I think this brings everyone up to speed with the crazy stuff that's been going on with me.
Jonah has been over to swim a couple of times, he sure seems to enjoy the water this year, but he really enjoys his sandbox.

Larger Update

You know if life was simple, dull & just the same ole, same ole each week it wouldn't be near as exciting now would it?  They did come up with a plan for my left leg, I do have Lymphedema or it can just be called Edema, this starts from the lymphatic system. I know thinking strange huh, well I guess over time with my stomach being cut open so much it has kinda jeopardized my lymph system. I had no idea that we had a large majority of lymph nodes in our stomach. So back to the compression stockings, oh and aren't they alot of fun, especially in the summer, elevate as much as I can, I have a few leg & feet exercises to do as well. I will be going in for my monthly massage but this time she will be doing something different. They have to be trained in edema therapy to do special therapeutic massages, I hope that this takes some of the pressure out of my leg, this will be later this month. You know the pool would be great too, pushing against the water, I haven't even been in the pool yet.

I always have to break things up a little, you know I go in week after week and have no issues, I set there a couple of hours take my chemo like I'm suppose to & leave. About 3 weeks ago I had an issue that I thought was a little strange, on Saturday or Sunday the tubing to my port & up through my neck got extremely sore & tender to the touch, the port itself felt fine. This lasted about 4 days & just stopped, I mentioned to my nurse the next Thursday, of course it had stopped hurting then but thought I should mention it anyway. The main thing for them is as long as they are getting a good blood draw they are good to go, it flushes fine & doesn't seem to have anything wrong with it. She said the only other thing it might have to come out & a new one put in, I'm like no thank you. Then last week it didn't happen so I just forgot about it, well this past week on Saturday it did the very same thing and again lasted about 4 days, strange I know. It of course had stopped hurting on Wednesday before I go in on Thursday, but again thought I should mention it to my nurse. She felt like Dr. Rosenfeld should decide what we should do, they felt like there might be a leak in one of the lines leading into my port, if so it could be oozing out somewhere. I went down for an xray, back up to the chemo room, my nurse wasn't thinking about my double port so I had to go back down to xray the other one. I'm never suppose to have the dye shot in me due to my kidneys but they checked & they could use a very small amount, take the xray & pull it back out, so that what they did. That is also why I had to make 2 trips to xray because they only put the dye in the one tube. So the xray didn't show a hole in the line but something is going on, they gave me antibiotics to take if it starts again, then I'm to call them so they can set me up with a surgeon, they can see any tiny, tiny pinhead of a hole with some type of test or scan that they have. But if my diagnoses is correct it won't happen this weekend it will skip another week, as I said I have the double port so I just rotate the access of it each week, upper or lower. What I am thinking is that it is something with my upper port because both times it has happened they have used my upper one. Kinda strange I know but sometimes you just know your body, but I could be so off. So needless to say it was a crazy day at HOG for me yesterday, I'm usually in at 9 & out by 11:30 but yesterday it was 1:15. I had an eye appointment at 1:30 & just barely made it, I didn't know they needed to dilate my eyes, so by the time I got out of there I was just worn out, got home around 4, felt like I'd had a full day & a half actually. I had such a headache, could it have been because I had no caffeine, no lunch, the chemo, (it does I know) dilating the eyes & just the stress of it all. Clay came in & I was out under the porch napping in the chaise, he even fixed dinner, I always leave the grilling to him but he did corn on the cob, fries with the pork chops, very yummy, he's a good guy!!!

You know besides these 2 little set backs I've been doing pretty good, this past week there were I think 4 days in a row that I didn't have alot of pain & felt pretty decent, it was nice for a change, I like those kind of days. Sorry for such a long post it's just what goes on in my everyday life.

I'm excited to go to a wedding tomorrow night, my cousin Bob's daughter is getting married, she will make a beautiful bride. Congratulations Janae & Kirby!!!!!