The long week in the hospital!

So, I am finally home from the hospital after a week and a day. It was a tough visit and very traumatic on several levels.

I'll explain my situation as well as I can.

Early last year I was put on a chemo drug called Gemzar. It was a rough chemo to take and really wore me out. I would get very tired and my white blood cells would drop. To counteract that, I would have to give myself injections of a drug called Nupogen. The Nupogen would help my white cells recover, but it had it's own side-effects. I would have severe back pain for one whole day. It felt like my spine was throbbing to the beat of my heart. To fight that I would have to take a narcotic pain killer called Dilaudid. That would make me loopy. So I spent many months of 2010 in a weekly stupor. It was not fun, but in November, scans showed that the was no "measurable" disease in my body. Once I heard that, all of the pain and irritation was suddenly worth it.

What I didn't know, but would soon find out was that the Gemzar was working on my body in other, far more dangerous ways. Not long after my hopeful news, I spent a weekend short of breath and feeling faint and dizzy. I had gone through 2 bouts of pneumonia, which I had never had and was even hospitalized for once. So, I thought I probably had pneumonia again. When I went in to see the nurse practitioner, she did a blood workup and scans. My blood pressure was elevated, I was anemic and there was fluid around my heart and lungs. I had to go in and receive 2 units of blood and I had an echo cardiogram. They tapped my lung to remove the fluid and eventually put me in the hospital for a procedure called a pericardial window. Between these two things, the fluid accumulation was taken care of. And, of course, I had been immediately taken off of Gemzar.

Once I healed from these experiences, I was made aware of another problem. My kidneys were also retaining fluid and my creatinine levels were rising. As those numbers go up, kidney function is going down.

So, I was sent to a urologist and had a surgery to put stents in my ureters to relieve the pressure on my kidneys. I never had any pain associated with this and I never stopped urinating. So, it's all thanks to Dr. Steffens staying on top of those blood tests and sending me for ultrasounds and such to catch what happened next before it was too late.

I actually had to have the stents replaced early because the creatine levels started to rise again. I had them put in on 3-10. I went in for blood work on 3-14 and had a call that night from Dr. Steffens. My creatinine levels were above 4 with 1.2 being normal. He told me to meet him at the hospital the next morning to be admitted.

I think my head was spinning. It all seemed to be coming from nowhere. I understood on some level that it was serious, but not kidney failure...which is exactly what it was.

I was admitted on 3-15 and spent that entire day sick. I mean, I was violently ill. I had a CT scan and ultimately spent the rest of that day in a fog.

On Wednesday, before I even knew what was happening, I was whisked away to radiology. There, they explained that they would be putting me under so the radiologist could insert tubes through my back into my kidneys. This would relieve the pressure since there is obviously some blockage that the stents are not able to get through. I had been catheterized, as I was no longer able to urinate but that wasn't helping relieve the fluid on my kidneys that couldn't get to my bladder.

So, the first night with my nephrostomy tubes, over 8 liters of urine was pulled off my kidneys. I was on an IV push of fluids to keep me hydrated while my kidneys just sent everything straight out.

Slowly, over the course of the week, they were able to slow the fluids and I increased my oral intake of water and my kidney function improved bit by bit. I was taken off IV fluids yesterday and woke up today to a perfect 1.2 creatinine level. Dr. Steffens discharged me and I am back at mom's house.

I still have my nephrostomy tubes draining, but I am also urinating on my own. I have my own theories about that. One kidney seems to be draining into the tube better than the other so I figure that blockage is still there and that's the only way it can go. But the left kidney is emptying into the bladder, as it should.

Now, what is this blockage? This was the question that I just couldn't grasp the answer to until this weekend. I have a condition called retroperitoneal fibrosis. the link will explain it better than I can. We don't really know the particular reason I have this disease, but I do. There are options for me, I think, with surgery being one. Major surgery. But until I meet with my urologist in his office, I can't be sure of what they all are. My particular disease is effecting my ureters high near my kidneys as opposed to lower near the bladder and that makes it a little different. I'll let you know when I know more.

For now, I will be laying low. I still have these tubes in and they are uncomfortable as well as being gross and ugly. Plus, I started a new chemo on Monday called Xeloda. It is an oral chemo and it seems to make me very tired. I am on a 21 day cycle. I will take 4 pills twice a day for 14 days, then get 7 days off. I hope it remains bearable and works for me. It will be nice for once to be able to do my chemo at home and not have to sit at the clinic for an infusion.

Everyone, be well and I will be updating when there is something to update!

With love and gratitude,
Tara

Location:Dennbriar Dr NW,Concord,United States

Doctor

Today I am going to an appointment with Dr. Steffens. I have had some pain in my right knee this week when I walk, so he sent me first for x-rays. Now I'm sitting waiting to check in. Blah! I hope I'm not late for the appt with Steffens! This place is a mess!

I had a request for more wig photos, so here's today's wig:









I got this wig at the new AWESOME shop at the hospital, Wishing Well! It's a fabulous shop for people in treatment as well as caregivers. If you ever go to CMCNE, check it out! There's actually something for everyone.

Love & Gratitude!

iPhone + photos! Awesome!

Chemo

So, this week I have cone to realize that I am tolerating chemo much better than I once thought. My former chemo nurse, Angela, made the point that I am in a tough regimen. If I take my compazine and change my low dose fentenal patch, I am almost feeling normal, with a bit of fatigue. So, I have no excuse for the woe is me! But I am tired.

Today, Eric and I are "out on the town." starbucks and Ikea! I am wearing my FREE wig! I even snapped a photo





I love it!

So on the trip to Ikea (dangerous) we found a media center that we just love in the as is room. All assembled and close to 1/2 price! We load it on the cart then Eric says, how are we getting this home. The Smart car is not conducive to large pieces of furniture. I have to call Gus to come and get it! He's not too happy, but he does it and I appreciate it!!!




We love it!!!

So we head home happy kids and excited to get it all set up!

Love and Gratitude,
Tara


iPhone + photos! Awesome!

bringing tears to my eyes!!!

Everyone must immediately go to

Amy's Blog


Read what my dear friend Amy has to say! Then go to:

http://store.bambako.com/product/tara-100-for-the-cure

What an amazing thing to do! Buy one of these adorable headbands, I know I will!!!!

Love and gratitude,
Tara

[i wrote this on my iphone...sorry no photos!]

I got a photo to work on my new app! Isn't it awesome!

write write write your blog...

I think I may be the worst blogger ever! I never take the time to let everyone know what's going on. I have taken to blogging on my phone and therefore, no photos this entry!

Well, 2 weeks after I had my port placed, I was back under the knife. The port had come unattached and flippedd. They ended up sending me to radiology to have it manually flipped back (PAINFUL) and accessed there for chemo. Today marks 2 weeks since the last surgery and Dr. Moore got that thing straight! He's awesome! He even told me that if he had to, he would use baling wire. I like a sense of humor in my doctors.

So, chemo is going right along. I have lost my hair...photos soon. I have 4 fabulous new wigs, so you never know if I'll be bald or wigging out.

The pain from the chemo is being held at bay with a VERY low dose pain patch. I don't feel doped up, but I am generally able to function. I haven't driven in about a month, but that's okay. I just know my reactions aren't what they should be.

I got another tattoo. This one is in honor of my dad. Pizza Hut Pete with his signature. It looks great! I think this will be it, if everyone would just stop dying on me.

Well, I will post more later and even some pics!

With love and gratitude,
Tara

[i wrote this on my iphone...sorry no photos!]

Surgery Today

I am getting ready to go to CMCNE where Dr. Moore is going to put in a port to make once-a-week chemo easier! I will have surgery today and the weekend to recover, then back to the grind of chemo on Monday. To help keep my spirits up, my cousins, Barry and Jeff, will be in town for the weekend. I'm looking forward to the laughs!

Love and gratitude,
Tara

[Posted with iBlogger from my iPhone]

the news

I am sorry it has taken me a week to update everyone on THE NEWS! I did my PET & Bone Scans last week and called Dr. Steffen's office first thing Thursday morning to find out results. Karey got back with me that afternoon and I did not get good news. The pet scan showed activity in lymph nodes in my lower abdomen (near my right kidney), my upper abdomen (near my aorta) and under my right arm. The bone scan showed that there is improvement in those original tumors but, paradixically, there is new activity in my ribs, right femur, left femur, left tibia and on the outer skull. So, needless to say, the time has come for a change of plan.

I started chemotherapy yesterday. I will be continuing on the Zometa and the Lupron, but we are stopping the Faslodex. I started a once a week regimen of Taxol and an every other week Avasten. The treatment took FOREVER. I got to the hospital @ 9am to get some x-rays of those bones in the left leg and Tina (IV QUEEN) Cull put in my IV. Then I headed over to the cancer center for my treatment. Of course, I dosed myself on Xanex and slept through most of it, but we didn't leave until 6:45 yesterday evening.

I brought my entourage, Mom, Gus, Eric, Mary Ann Chopko and Tina! I saw some if my old friends from over the many years I have been a patient there and overall, it was a pleasent experience.

This morning, I am feeling a little pukey, but not too bad. I will start losing my hair in 2-4 weeks. I have an appointment with Dr. Moore (the surgeon who did my mastectomy) at 10.15 today and sometime this week he will put a port in my chest to give those poor old veins a rest!

Overall, I accepted so much of this a long time ago and I am not ready to give up the battle! Continue sending your vibes my way and with everyone's help, I just might win this fight!

Love and gratitude!
Tara

And, I must give my mother a public shout-out for my new Ikea chaise lounge! I will be recovering in style and comfort! Thanks Mom!

Mobile Blogging from here.

[Posted with iBlogger from my iPhone]