Another doc, more tests and CA 125

I can’t believe how unraveled my whole life is becoming. More questions than answers piling up. I have faithfully taken those Chinese Herbs. (They look like little BB’s.) I’m sure that some of the debris from the kidneys got out. It gave me temporary relief and I thought, I nailed it. Until the pain came back with a vengeance. It feels like some little gerbil is biting its way through the abdomen. Really. Although not much faith, I called my OBGYN for an appointment. This was de ja vue of 11 years ago, when I came to his office, crying in pain.

Well, we now know how that ended. This time, I already know that I have cancer, so I just needed help with this pain. He was not encouraging. Would not advice laparoscopy because they may encounter something much worse, i.e. cancer stuff and won’t be able to deal with that kind of surgery. He suggested a colonoscopy. Wow-yay! But, since I’ve not had one in 6 years I said O.K. I am not, at all looking forward to that procedure.

I remembered that I had some dealings with pain two years ago, which had me visit the Emergency room. I got my diary and went back and sure enough I’m describing the very same symptoms, place and severity. They hooked me up to Morphine and I remember saying , ‘Thank GOD for drugs’ as it flowed through the veines and I could feel the relief at once. No diagnosis though. As I was still losing weight at that time, it seemed to disappear after awhile. I wonder, if these is the same scar tissue that I’ve had so much problems with, over the years. I’ve had 2 surgeries to alleviate that pain but it always returns-worse. Research shows, that it’s a chronic disease. To think, I may have to live like this, is not an option. I wouldn’t care if I got ‘just’ another 10 years out of it, I’d go for it.

I will have to call my Oncologist and see what she says. We know, this has nothing to do with the cancer, although my Doc, here, always seems to want to place it there. I’ve had my CA 125 blood test (cancer marker) the other day and doc called me yesterday to give me the result. It went up. He said to start thinking about oral chemo. He thinks this is the cancer pushing on something or has grown to where it gets in the way. I am going to be contrary again, and say no, these are adhesions. My oncologist says: This is not the cancer. Radiologist and her went over that CT scan with a fine tooth-comb and nothing has changed. (Except numbers are a bit up. But we won’t worry until numbers go up 35-45 points.) They went up only 6 points.

I was not surprised as my Immune system is fighting this inflammation and taking these meds will always change numbers. I can feel myself slipping. I wonder where all this great energy went? I am uninspired about cooking. I feel no great need to eat. (That worries me a bit). I am not motivated because I am in pain so much that nothing else seems to matter. I just want to reach in there and rip it out. I tell myself to ‘buck up’, to get over it, to stop being a wimp’. But time is starting to wear me down. I can’t concentrate on helping myself against the cancer, as I have to get my energies toward this  issue now. If it isn’t one damn thing, it’s another. I am starting to feel overwhelmed, again. Since I have not been able to walk much, I’ve gained weight. That has to go so now I am back on track. But, my friends are not making it easy. They invite me, either out or to their home and surprise me with wonderful food, but not the kind I’m allowed. Then they say, oh, go ahead, it won’t hurt you this once! Yes, it does. And it’s not just once. I’m struggeling with low appetite and so they want to tempt me, so I’ll eat. Loving gestures but I need to get back into my lifestyle.

My friend Julie called and she will come on June 2nd to  help me for a week. Help clean, cook and go walking with me. I wish my family lived closer.

My BFF Irene, send a birthday card with money and although I told her NOT to, she ignored me and did anyway. I’ll use it to have acupuncture since that is helping a lot. (And, maybe a pedicure because my feet hurt.) All these extra treatments and herbs and supplements are costing a mint. Not something that Medicare pays but yet vital to me, in fighting this fight.

I still try to envision my trip to Austria, this fall. I can’t seem to see myself there, yet.

I’ve been walking again because I can’t just sit here. I need to move. I’m taking Ibuprofen before I start and hope I can finish.

Tomorrow is my 68th birthday. I look at that number and it looks so strange. I don’t feel ‘that old’. On the other hand, two years ago when I didn’t know where this journey would take me and the ‘C’ loomed huge and scary, I am sure glad to see 68. If I just get to feel better, I don’t want anything else. Ever. I don’t care about a new house, or furniture or keeping up with certain people. I don’t care about sleek cars and who’s got more. I just want to feel  better. In that is a richness beyond compare.

I am trying to get my ‘umph’ back.

 

Calling Dr. House.

When the TV series ‘House’ started, I watched each week, applauding the cleverness of this Diagnostician and super medical strategist. But after awhile his rude behavior got on my nerves and I stopped. Of course, there was a reason for this behavior. I remember he had a medical condition that caused severe pain.

NOW I understand what it must be like for someone who is in constant pain. How it eats away all the good feelings and joy. As well as appetite.

It took a few days for the dismissive way the Urologist handled the visit, to sink in. He had insisted on a bladder scope ‘to rule it out’. I’d told him, there’s nothing wrong with my bladder. Another test, that was not necessary. He gave me a precribtion for PT! Yes. Physical Therapy. I looked at it, then him and said ‘what?’ I can barely function due to this pain and I should do therapy???WTH?  I may need a laparoscopy to figure out the cause. My oncologist is firm with her statment that this is NOT cancer related.

I am just sick of the whole thing.

My friend Lori, who works at Organic Grocers recommended a natural treatment. It’s for kidney health. Uva Ursi. Not to be taken longer than 2 weeks. So, I’m trying this right now. On Wednesday I’m going back to have acupuncture as well as the herb he had special ordered. Of course, there’s a lot of advice from friends. Try Asparagus. Try this tea. Try this herb….I am my own guinea pig.

Can’t concentrate on what to do and a new plan against cancer as I have to put this ‘fire out’ first. Yesterday, was a bad day. I am fighting against falling into depression. I believe that when I take morphine, it ascerbates this feeling.

I feel shut in. No real plans, since this is really holding me back. Can’t travel this way. Going to bed with pain, getting up with pain.

I still walk, some.  When I think, that just a few months ago I was walking 8-10 hours a day and now, barely get 35-45 minutes in, I am really sad.  Two years of medical dealings is now taking its toll. Can’t get my ‘oommmph’ back. How can anything keep hurting like this? Sharp pain. Am I whining now? Yes. Do I feel sorry for myself? Just for a little bit, at least until the pill is working. I want to say, stop! I don’t want to play anymore. I don’t like this game. I am tired.

Mainly what I need is a good doctor. Gosh, remember Dr. Welby? He made house calls. I’ve tried the ‘Symptom’ checker online. But there are too many possibilities so there’s no answer to be found.

If any of you know a good doctor, do let me know. I’m almost out of ideas.

 

 

Fiesta–Test results–new malady

We sure packed a lot of activities into the last few weeks. Filled with happy anticipation to see our camino friends again, I drove Cameron’s old Land Rover to Grand Junction to pick up Julio, Marie Anne and a little later, Cameron as well.

I’d bought a few flowers to greet MarieAnne and a bottle of Rioja wine (Bilboa) for Julio.

When I entered the hotel, they were already seated in the lobby, waiting. A big, cheery hello with a few tears from Marie Anne. They had visited New York for 4 days, then came by Amtrack to Grand Junction. Julio told me that MarieAnne, while looking out the window, kept saying ‘so big, so big.’

We stopped at a Diner and had a genuine American breakfast. Then it was time to pick up Cameron. What a happy  reunion all around. Carrie had seen them the day before and spend a few wonderful hours touring the Monument.

Next morning after breakfast we took them to Ouray and Box Canyon. Amazing how that water rushes and is pounding with great force through the hole in the rock that took millions of years to create. They were duly impressed.

Saturday morning, they were helping to set up the yard and cleaning, etc. for the Fiesta. Carrie came with her sister and her dad. Their mom came later with marvelous Truffels.

Pretty soon, all guests had arrived and we introduced our guest around, mostly to people that had read the blog and had many questions for both.

Sunday, we went to the Black Canyon and also had a picnic. Cameron decided that they should see The Arches in Utah’s canyonland. They took off Monday, while I took care of things here and also had several blood tests and an up coming CT scan to determine, whether there has been any growth.

Blood test results were great. Cancer markers had not gone up. Stable. On May 2nd, we all drove to Grand Junction for CT scan and an appoinment with oncologist afterward.

Dr. M. showed us the scan and was reasonably sure that there too, was no sign of growth. BIG exhale for me. I did tell her about the ‘new’ pain in my left, lower pelvis. I thought and believed that I had a kidney stone(s). After viewing the scan, she said that Radiologist pointed out some small stones in the the Urethra. Thus, the horriffic pain. I told her, that I was afraid turning into a Junkie trying to stay on top of this pain. I am not going to live like this, is what I said. I figured out the best way to medicate: 1 Ibuprofen (600 mg, followed 45 min later by 1/2 of Morphine (10 mg). I nearly cried with relief when the pain finally stopped. I also came down with a unpleasant chest cold. This constant pain is taking a big chunk out of my ‘cheerfulness’ and up-beat, positivity, etc. These pills are making me not only dizzy but weepy. I’m going to try a brownie, laced with Marijuana. No nightmares and bad side effects.

Well, smiled Dr. M. looks like you have another 3 mos before we check.  Keep up what you’re doing. Although I had not been doing that well and kept falling ‘off the wagon’ with eating all sorts of ‘regular’ food. But, now I’m back on it. I don’t feel very energetic when I don’t get my ‘greens’. She said, I want you to think about taking ‘Tamoxifen’. It’s an oral chemo pill. You can’t just keep having this cancer and even though, you’re doing well,  should think about this option. I want to talk to you about side effects, when the time comes.

Well! I did check on those side effects: Stroke, peritoneal/ vaginal cancer, and a host of other possibilities. How can this be called a ‘life saving’ med??

I have 3 months to do something and try to get the numbers down, the tumor reduced.

My Acupuncturist was ordering herbs to diminish stones. Now, I must call and cancel. I wonder if Dr. B. could be wrong? I’m just stunned.

Those few days were over too quickly and Julo and MarieAnne had to leave. They couldn’t say enough about wonderful, colorful Colorado and awesome Utah. We were marveling at the fact that last year, in May, none of us knew each other and yet, here we were, darn good buddies and an experience that has bonded us for life.

Friday, I had some nice friends here for lunch from Utah.

The Aunties came from Rangely for 2 days after, so we still had nice company. Then, they too were gone and took Cameron to the airport. Wow. The house was still and quiet. Everyone has abandoned me. I wandered through the rooms and not even the mouse is back.

I’ve finished my medicine wheel garden. Not all the planting as it takes a lot of plants (money) but I have time. When I checked on a peace pole, the lady offered to come with the Indian Society Members to perform a ceremony. No charge. I am so tickled.

I had an appointment with Urologist Dr. B. whom I had been to a few years ago. I couldn’t take any meds before driving 1 hr and 20 min. By the time I got there, I was in agony. The usual bloodpressure, vitals were taken. Dr. B. came in and after the cordials he looked at the CT scan and said that there were NO stones in the urethra. Only 2 small ones in the right kidney but they could easily get out if needed to. So? I asked. What is this pain? Classic symptoms of reduced urine flow, horrible, prolonged pain. Tiny, pink droplets. That does not mean stones? That’s right, he said. Well, I wanted to know, ‘WHAT is it?”

” I don’t know,’ he says. You need to go back to Dr. M. and find out where this is coming from. I can’t believe it! Back to square one! Where do I go? Whom do I see?

Last night, as I woke with pain again, I wondered whether this could be caused by scar tissue? I had this before, 10 years ago on my right side. Left over from a pediatric Ruptured Appendix surgery. These now, could be caused from the debulking surgery from Ovarian Cancer/Hysterectomy

I can feel the meds taking hold and numbing my brain and thoughts. I better stop before all sorts of nonsense appears.

 

May, 2012 | Camino Not Chemo!

Another doc, more tests and CA 125

I can’t believe how unraveled my whole life is becoming. More questions than answers piling up. I have faithfully taken those Chinese Herbs. (They look like little BB’s.) I’m sure that some of the debris from the kidneys got out. It gave me temporary relief and I thought, I nailed it. Until the pain came back with a vengeance. It feels like some little gerbil is biting its way through the abdomen. Really. Although not much faith, I called my OBGYN for an appointment. This was de ja vue of 11 years ago, when I came to his office, crying in pain.

Well, we now know how that ended. This time, I already know that I have cancer, so I just needed help with this pain. He was not encouraging. Would not advice laparoscopy because they may encounter something much worse, i.e. cancer stuff and won’t be able to deal with that kind of surgery. He suggested a colonoscopy. Wow-yay! But, since I’ve not had one in 6 years I said O.K. I am not, at all looking forward to that procedure.

I remembered that I had some dealings with pain two years ago, which had me visit the Emergency room. I got my diary and went back and sure enough I’m describing the very same symptoms, place and severity. They hooked me up to Morphine and I remember saying , ‘Thank GOD for drugs’ as it flowed through the veines and I could feel the relief at once. No diagnosis though. As I was still losing weight at that time, it seemed to disappear after awhile. I wonder, if these is the same scar tissue that I’ve had so much problems with, over the years. I’ve had 2 surgeries to alleviate that pain but it always returns-worse. Research shows, that it’s a chronic disease. To think, I may have to live like this, is not an option. I wouldn’t care if I got ‘just’ another 10 years out of it, I’d go for it.

I will have to call my Oncologist and see what she says. We know, this has nothing to do with the cancer, although my Doc, here, always seems to want to place it there. I’ve had my CA 125 blood test (cancer marker) the other day and doc called me yesterday to give me the result. It went up. He said to start thinking about oral chemo. He thinks this is the cancer pushing on something or has grown to where it gets in the way. I am going to be contrary again, and say no, these are adhesions. My oncologist says: This is not the cancer. Radiologist and her went over that CT scan with a fine tooth-comb and nothing has changed. (Except numbers are a bit up. But we won’t worry until numbers go up 35-45 points.) They went up only 6 points.

I was not surprised as my Immune system is fighting this inflammation and taking these meds will always change numbers. I can feel myself slipping. I wonder where all this great energy went? I am uninspired about cooking. I feel no great need to eat. (That worries me a bit). I am not motivated because I am in pain so much that nothing else seems to matter. I just want to reach in there and rip it out. I tell myself to ‘buck up’, to get over it, to stop being a wimp’. But time is starting to wear me down. I can’t concentrate on helping myself against the cancer, as I have to get my energies toward this  issue now. If it isn’t one damn thing, it’s another. I am starting to feel overwhelmed, again. Since I have not been able to walk much, I’ve gained weight. That has to go so now I am back on track. But, my friends are not making it easy. They invite me, either out or to their home and surprise me with wonderful food, but not the kind I’m allowed. Then they say, oh, go ahead, it won’t hurt you this once! Yes, it does. And it’s not just once. I’m struggeling with low appetite and so they want to tempt me, so I’ll eat. Loving gestures but I need to get back into my lifestyle.

My friend Julie called and she will come on June 2nd to  help me for a week. Help clean, cook and go walking with me. I wish my family lived closer.

My BFF Irene, send a birthday card with money and although I told her NOT to, she ignored me and did anyway. I’ll use it to have acupuncture since that is helping a lot. (And, maybe a pedicure because my feet hurt.) All these extra treatments and herbs and supplements are costing a mint. Not something that Medicare pays but yet vital to me, in fighting this fight.

I still try to envision my trip to Austria, this fall. I can’t seem to see myself there, yet.

I’ve been walking again because I can’t just sit here. I need to move. I’m taking Ibuprofen before I start and hope I can finish.

Tomorrow is my 68th birthday. I look at that number and it looks so strange. I don’t feel ‘that old’. On the other hand, two years ago when I didn’t know where this journey would take me and the ‘C’ loomed huge and scary, I am sure glad to see 68. If I just get to feel better, I don’t want anything else. Ever. I don’t care about a new house, or furniture or keeping up with certain people. I don’t care about sleek cars and who’s got more. I just want to feel  better. In that is a richness beyond compare.

I am trying to get my ‘umph’ back.

 

Calling Dr. House.

When the TV series ‘House’ started, I watched each week, applauding the cleverness of this Diagnostician and super medical strategist. But after awhile his rude behavior got on my nerves and I stopped. Of course, there was a reason for this behavior. I remember he had a medical condition that caused severe pain.

NOW I understand what it must be like for someone who is in constant pain. How it eats away all the good feelings and joy. As well as appetite.

It took a few days for the dismissive way the Urologist handled the visit, to sink in. He had insisted on a bladder scope ‘to rule it out’. I’d told him, there’s nothing wrong with my bladder. Another test, that was not necessary. He gave me a precribtion for PT! Yes. Physical Therapy. I looked at it, then him and said ‘what?’ I can barely function due to this pain and I should do therapy???WTH?  I may need a laparoscopy to figure out the cause. My oncologist is firm with her statment that this is NOT cancer related.

I am just sick of the whole thing.

My friend Lori, who works at Organic Grocers recommended a natural treatment. It’s for kidney health. Uva Ursi. Not to be taken longer than 2 weeks. So, I’m trying this right now. On Wednesday I’m going back to have acupuncture as well as the herb he had special ordered. Of course, there’s a lot of advice from friends. Try Asparagus. Try this tea. Try this herb….I am my own guinea pig.

Can’t concentrate on what to do and a new plan against cancer as I have to put this ‘fire out’ first. Yesterday, was a bad day. I am fighting against falling into depression. I believe that when I take morphine, it ascerbates this feeling.

I feel shut in. No real plans, since this is really holding me back. Can’t travel this way. Going to bed with pain, getting up with pain.

I still walk, some.  When I think, that just a few months ago I was walking 8-10 hours a day and now, barely get 35-45 minutes in, I am really sad.  Two years of medical dealings is now taking its toll. Can’t get my ‘oommmph’ back. How can anything keep hurting like this? Sharp pain. Am I whining now? Yes. Do I feel sorry for myself? Just for a little bit, at least until the pill is working. I want to say, stop! I don’t want to play anymore. I don’t like this game. I am tired.

Mainly what I need is a good doctor. Gosh, remember Dr. Welby? He made house calls. I’ve tried the ‘Symptom’ checker online. But there are too many possibilities so there’s no answer to be found.

If any of you know a good doctor, do let me know. I’m almost out of ideas.

 

 

Fiesta–Test results–new malady

We sure packed a lot of activities into the last few weeks. Filled with happy anticipation to see our camino friends again, I drove Cameron’s old Land Rover to Grand Junction to pick up Julio, Marie Anne and a little later, Cameron as well.

I’d bought a few flowers to greet MarieAnne and a bottle of Rioja wine (Bilboa) for Julio.

When I entered the hotel, they were already seated in the lobby, waiting. A big, cheery hello with a few tears from Marie Anne. They had visited New York for 4 days, then came by Amtrack to Grand Junction. Julio told me that MarieAnne, while looking out the window, kept saying ‘so big, so big.’

We stopped at a Diner and had a genuine American breakfast. Then it was time to pick up Cameron. What a happy  reunion all around. Carrie had seen them the day before and spend a few wonderful hours touring the Monument.

Next morning after breakfast we took them to Ouray and Box Canyon. Amazing how that water rushes and is pounding with great force through the hole in the rock that took millions of years to create. They were duly impressed.

Saturday morning, they were helping to set up the yard and cleaning, etc. for the Fiesta. Carrie came with her sister and her dad. Their mom came later with marvelous Truffels.

Pretty soon, all guests had arrived and we introduced our guest around, mostly to people that had read the blog and had many questions for both.

Sunday, we went to the Black Canyon and also had a picnic. Cameron decided that they should see The Arches in Utah’s canyonland. They took off Monday, while I took care of things here and also had several blood tests and an up coming CT scan to determine, whether there has been any growth.

Blood test results were great. Cancer markers had not gone up. Stable. On May 2nd, we all drove to Grand Junction for CT scan and an appoinment with oncologist afterward.

Dr. M. showed us the scan and was reasonably sure that there too, was no sign of growth. BIG exhale for me. I did tell her about the ‘new’ pain in my left, lower pelvis. I thought and believed that I had a kidney stone(s). After viewing the scan, she said that Radiologist pointed out some small stones in the the Urethra. Thus, the horriffic pain. I told her, that I was afraid turning into a Junkie trying to stay on top of this pain. I am not going to live like this, is what I said. I figured out the best way to medicate: 1 Ibuprofen (600 mg, followed 45 min later by 1/2 of Morphine (10 mg). I nearly cried with relief when the pain finally stopped. I also came down with a unpleasant chest cold. This constant pain is taking a big chunk out of my ‘cheerfulness’ and up-beat, positivity, etc. These pills are making me not only dizzy but weepy. I’m going to try a brownie, laced with Marijuana. No nightmares and bad side effects.

Well, smiled Dr. M. looks like you have another 3 mos before we check.  Keep up what you’re doing. Although I had not been doing that well and kept falling ‘off the wagon’ with eating all sorts of ‘regular’ food. But, now I’m back on it. I don’t feel very energetic when I don’t get my ‘greens’. She said, I want you to think about taking ‘Tamoxifen’. It’s an oral chemo pill. You can’t just keep having this cancer and even though, you’re doing well,  should think about this option. I want to talk to you about side effects, when the time comes.

Well! I did check on those side effects: Stroke, peritoneal/ vaginal cancer, and a host of other possibilities. How can this be called a ‘life saving’ med??

I have 3 months to do something and try to get the numbers down, the tumor reduced.

My Acupuncturist was ordering herbs to diminish stones. Now, I must call and cancel. I wonder if Dr. B. could be wrong? I’m just stunned.

Those few days were over too quickly and Julo and MarieAnne had to leave. They couldn’t say enough about wonderful, colorful Colorado and awesome Utah. We were marveling at the fact that last year, in May, none of us knew each other and yet, here we were, darn good buddies and an experience that has bonded us for life.

Friday, I had some nice friends here for lunch from Utah.

The Aunties came from Rangely for 2 days after, so we still had nice company. Then, they too were gone and took Cameron to the airport. Wow. The house was still and quiet. Everyone has abandoned me. I wandered through the rooms and not even the mouse is back.

I’ve finished my medicine wheel garden. Not all the planting as it takes a lot of plants (money) but I have time. When I checked on a peace pole, the lady offered to come with the Indian Society Members to perform a ceremony. No charge. I am so tickled.

I had an appointment with Urologist Dr. B. whom I had been to a few years ago. I couldn’t take any meds before driving 1 hr and 20 min. By the time I got there, I was in agony. The usual bloodpressure, vitals were taken. Dr. B. came in and after the cordials he looked at the CT scan and said that there were NO stones in the urethra. Only 2 small ones in the right kidney but they could easily get out if needed to. So? I asked. What is this pain? Classic symptoms of reduced urine flow, horrible, prolonged pain. Tiny, pink droplets. That does not mean stones? That’s right, he said. Well, I wanted to know, ‘WHAT is it?”

” I don’t know,’ he says. You need to go back to Dr. M. and find out where this is coming from. I can’t believe it! Back to square one! Where do I go? Whom do I see?

Last night, as I woke with pain again, I wondered whether this could be caused by scar tissue? I had this before, 10 years ago on my right side. Left over from a pediatric Ruptured Appendix surgery. These now, could be caused from the debulking surgery from Ovarian Cancer/Hysterectomy

I can feel the meds taking hold and numbing my brain and thoughts. I better stop before all sorts of nonsense appears.