Well, I am the worst blogger on the planet. I guess it's safe to say that I have been holding the realities of my illness close to my chest for quite a while. There are certain things I have chosen to not share with everyone. And, I am going to continue that way. But, that said, I have started a new chemotherapy due to new things showing up on scans.
I started to have some pain in my ribs on the right side in September. I talked with Dr. Steffens about the pain and he suggested I see Dr. Lankford in radiation oncology. I met with him and we decided to do 10 radiation treatments on my ribs. This is the quickest way to get rid of the pain...and it worked! I am no longer having pain in my ribs. That is the great news. But, the ribs were not the only spot lighting up on my scans. There is a spot in the soft tissue of my left flank.
I sat down last week with Dr. Steffens and he had 5 different drugs that were options for me. We opted out of 3 drugs, due to the high risk of neuropathy. I already have a pretty severe case of neuropathy in my right foot and we really don't want to compound that issue. So, that left 2 drugs. One of the drugs was offered as an oral option. The last chemotherapy I was on, Xeloda, was also oral. I took it on a 21 day schedule: 14 days on and 7 days off. The VB-16 is the same schedule. It sounded like a great option to me. Any chance I have of skipping out on going to the clinic for infusions, I am going to jump on it.
After almost an entire week of being put on hold by my pharmacy, I finally started the VB-16 last night. I will be taking 50mg once a day for the next 2 weeks. I am a little nervous. I am going to lose my hair. I know I've done it so many times before, but this time is going to be a little harder for me. I was finally growing out my hair. I have only had a handful of cuts since February of 2010. I know it's only hair, but I was excited to have longer hair for the first time since I was in high school. That being said, I'll get over it. I always do. There is a risk of me being neutropenic and of getting nauseous. I have really been feeling pretty great for most of this year and I'm not looking forward to feeling crappy. Whine Whine Whine!!!
I have been doing a bit of traveling this year. I still have lots of plans for more travel and I hope this chemo regimen does not get in the way of that. I stepped out of my little bubble world last year and went to Park City, Utah for Christmas. Since dad died, I have had a really hard time being home on the holidays. Last year we spent the holiday with family; Gloria, Sarah, Jeff and Wynter. It was awesome. Then we went to San Francisco to see our family there. We had such a good time with Evelyn, Donna, Steve, Heather, Steve and Ella. I had so much fun that I decided to stay on through New Years. Heather and Steve had an awesome party and it was amazing to be out and about again. The trip gave me some confidence in myself that had been missing for way too long. Due to the fun I had on that trip, I made a decision to get out more. I went to the beach 3 times this year. I went to my cousin Barry's wedding in May, in Wichita, KS. That trip was awesome, as I got to see everyone in the Engstrom family. I spent a week in the triangle area of NC visiting 3 different friends and their kids. Aninda, Kat and Amy were awesome hostesses and I loved playing with and getting to know their kids better. 2 of the beach trips were with Kimyatta, Gary, Kat and Aninda. The five of us are such great vacation buddies and all just love hanging out and telling stories and laughing!! Lots of laughs! The last beach trip was with my mother and my aunt Gloria. We also had a really great time. Finally, I spent last weekend in Park City again. My cousin Sarah had a big celebration for her 40th birthday! My cousins Jeff, Barry and Lindsey were also there to help celebrate. We had such a great time! I went as hard as my body would let me and I have spent the last week trying to catch back up on my sleep!
So, I will try to keep everyone updated on my progress on this chemotherapy.
Thank you so much for reading my ramblings!
Love and joy!
Tara
Saturday, October 20, 2012
Sunday, March 27, 2011
Update
Well, my 3 days out of the hospital have been nothing short of busy. I knew that I would be expected to do blood work everyday to keep an eye on those creatinine levels and so I headed to the cancer center on Thursday with my big ol' nephrostomy tubes/bags. I waited an our for the results and it came back that my #s had slipped .1. Dr. Steffens had them give me 2 bags of fluid and I was reminded to drink drink drink.
As I wrote in the last post, there was nothing draining into the left bag, so on Friday morning I called my urologist to speak about it and give my "professional" opinion. He sent me down to interventional radiology (the department that put the tubes in) to have a dye test run and see if indeed that left ureter was working. The nurse looked at the tube and immediately noticed that the valve on the left tube was TURNED OFF! That explains why nothing was draining. But, since I am able to urinate, the ran the test anyway. It consisted of them injecting dye into the tube and taking pictures with the ultrasound machine to see if it would indeed empty into my bladder. They tested both sides and the right side still didn't drain to the bladder, but the left side did.
We were able to cap off the left side (the tube is still there, but only barely sticks out of my back) and they down-graded my right bag to a leg bag. They actually couldn't believe I was sent home with those huge bags. The leg bag is far more discreet and can fit in a pocket or be strapped to my leg under my clothes. It is such a burden released from my shoulders. I have to empty the bag a bit more often, but that's fine with me. And to know that the left kidney/ureter is working makes me feel a little better.
My blood work on Friday came back great and I don't have to go back until Monday. I just have to continue hydrating and keep myself as healthy as I can. I'm still very tired and could nap all day long and sleep all night, but it's a small price to pay in the scheme of things. It tells me that so far my body is tolerating the chemotherapy. As of today I will have my first 7 days down with 7 more to go until my break.
So, that's where things stand for now! I'll update when I know more!
With love and gratitude,
Tara
- Posted from my iPad!!!
As I wrote in the last post, there was nothing draining into the left bag, so on Friday morning I called my urologist to speak about it and give my "professional" opinion. He sent me down to interventional radiology (the department that put the tubes in) to have a dye test run and see if indeed that left ureter was working. The nurse looked at the tube and immediately noticed that the valve on the left tube was TURNED OFF! That explains why nothing was draining. But, since I am able to urinate, the ran the test anyway. It consisted of them injecting dye into the tube and taking pictures with the ultrasound machine to see if it would indeed empty into my bladder. They tested both sides and the right side still didn't drain to the bladder, but the left side did.
We were able to cap off the left side (the tube is still there, but only barely sticks out of my back) and they down-graded my right bag to a leg bag. They actually couldn't believe I was sent home with those huge bags. The leg bag is far more discreet and can fit in a pocket or be strapped to my leg under my clothes. It is such a burden released from my shoulders. I have to empty the bag a bit more often, but that's fine with me. And to know that the left kidney/ureter is working makes me feel a little better.
My blood work on Friday came back great and I don't have to go back until Monday. I just have to continue hydrating and keep myself as healthy as I can. I'm still very tired and could nap all day long and sleep all night, but it's a small price to pay in the scheme of things. It tells me that so far my body is tolerating the chemotherapy. As of today I will have my first 7 days down with 7 more to go until my break.
So, that's where things stand for now! I'll update when I know more!
With love and gratitude,
Tara
- Posted from my iPad!!!
Wednesday, March 23, 2011
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
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
Thursday, November 12, 2009
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!
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!
Wednesday, November 11, 2009
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!
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!
Monday, November 9, 2009
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 got a photo to work on my new app! Isn't it awesome!
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 got a photo to work on my new app! Isn't it awesome!
Wednesday, October 21, 2009
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
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
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