Update...

After a frustrating couple of days, I think someone was actually listening...

As I wrote, my oncologist wants me to continue the Fragmin injections, which I strongly objected to, without any kind of testing to see if it was needed. I called the patient advocates office, and the woman I spoke to said she would have my Dr call me. This was on Monday. I waited all day Tuesday for a call. When it got late in the afternoon, I called her back, got her voice mail, left a message, and got no response. I gave myself an injection, and went to bed angry. I only had one more syringe, so I needed to go to MDACC and pick up more. While I was there, before I went to the pharmacy, I went to the advocates office, and went through my song and dance in person to two nice young women, who said they would see what they could find out from my Dr and get back to me quickly, because I told them I didn't want to fill the prescription if I didn't need it. I sat down to eat lunch and wait. When the call came It wasn't what I wanted to hear. The woman on the phone, (still not my Dr), told me that it was important for me to stay on the fragmin to avoid a potentially fatal blood clot traveling to my lung. I again stressed my dis-satisfaction with being on this blood thinner without anyone checking to see if it was still necessary. She put me on hold, to check with a pharmacist, who said the same thing.
I gave in, and agreed to continue the injections, under protest, and hung up on her. I filled the prescription, and drove out to the farm to feed the stock, and spend some time alone, to cool off. I'm sure my blood pressure was sky high.

Tonight, I received an email that I had an appointment next Wednesday. This was news to me. The only appointment I knew about was one on Monday with my radiation oncologist.
When I logged on to my MDAnderson website to check my appointment schedule, I now have an appointment for an ultrasound, and an appointment with my own oncologist the same day, not his colleague the week after.

I left there thinking I had been spinning my wheels, without success, but someone was listening. If the test shows I need the fragmin, I will continue the injections without complaint, I just want to make sure the pain and expense are necessary.

Bitchfest!!!!

I'm so angry I can hardly type! I find out today that my Dr wants me to start back on the fragmin, without a test to see if it is still necessary! I don't have a follow up appointment with my oncologist for another 2 weeks, and my Dr won't be there, so I'll see someone else who I've only met once. My Dr won't order a sonogram of my arm to see the status of the clot they seem so worried about, but wants me to start injecting myself with blood thinners again TODAY, and to continue for the next 2 weeks, when they will discuss this with me and they will write a new "script", at that time for more of the same. I was told that I needed to stay on the Fragmin till my surgery, which was 12 days ago. Two days after surgery, my surgeons nurse called me to tell me I could start back on the Fragmin. I emailed my oncologist's nurse to ask her about this, 10 days ago, and recieved no reply, though I know she got the email, as I recieved an auto-reply when she opened it. I figured I was done with the damn things, and was very happy. Now that nurse is on vacation, and I find out that I'm supposed to be injecting myself with the damn stuff, and they want me to start today, and continue till God knows when, without checking to see if the clot is even still there. I've called the patient advocate, but had to leave a message, which really pisses me off even more. I hate leaving voice mail! Why can't they order a sonagram to check. It has been just short of 5 months since this started. And Why, if they knew I was going to have to continue the injections after surgery, didn't they level with me, and tell me up front, instead of letting me think I was done? That is the second thing I found out today that is upsetting to me. I feel like they weren't honest with me about what is involved with lymph node biopsy, and now, to find out that I was misinformed about this is just too much!!!!

Biopsy report

I met with my surgeon today. All the lymph node biopsies were negative for cancer cells. This is excellent news! I also found out that they were very careful to mislead me about how lymph node biopsy is done. I thought they would do needle biopsy, like they do for a suspicious mass. No, they remove the nodes. I thought I was very clear that I didn't want any nodes removed unless it was shown to be necessary. I was told they would biopsy the sentinel nodes, closest to the tumor. They were very careful to not explain that in order to biopsy them they had to remove them. I found out today that they had removed 9 nodes from my arm pit. The surgeon was very surprised that they were all negative. She said she expected some of them to be positive, due to the size of my tumor, and the size of the lymph nodes themselves, because some of them were larger than normal. I'm not pleased! I didn't want nodes removed because I'd already had problems with lymphadema in my left arm following a port clot. I didn't want to chance having it occur in my right arm.

I also was told by my surgeon that I most likely should still be on blood thinners. She said most of the time they are prescribed for 6-12 months, and I'd been on them for only 5. I'm waiting to hear from my oncologist. I emailed his nurse right after surgery, and received no answer, which I took to mean I didn't need them. Now I find out she is on vacation. I don't want to give myself shots every day. I want them to do an ultrasound, and check the clot, not just put me back on a medication that I may not need anymore. The surgeon wouldn't order the test. I don't know if my oncologist will or not. I'm going to push for it, before he puts me back on the damn shots. They hut like hell. The needle itself hurts, and the medication burns for 5 min. after, and leaves bruises.

I know I should be elated with the news about the biopsies, and I am, but it is overshadowed by the other things I've found out, and takes away from my enjoyment of feeling cancer free.

Dewberries!

We picked dewberries at the farm today. We picked enough to fill one 16oz cup and 1/2 fill a second, not counting the ones we ate. This was from one small area of vines growing along the fence and over a pile of old fence posts. My daughter make dewberry pancakes and eggs for dinner, and baked dewberry muffins for tomorrow's breakfast. Yummy!

We now have electricity hooked up to the well and the barn. We have lights, and water!!!! Only a week too late for the SCA event we held there last weekend.

The well is only a temporary connection. We need to trench and run it through conduit, but I think we can handle that ourselves and for a fraction of what our electricians would want to charge us. We will also need to buy connections so we can put a hose on the tank, to bring the water where we need it for now.

We have found a place to buy a new drive shaft for our auger. The old one was bent, and torqued, buy the electricians when they set the meter posts for the houses. A new one will cost $200+. We will send a copy of the invoice with our payment, and deduct the cost from the final remittance to the electricians. The tractor place had to order the part, and it should be in this coming week. We can finally set the fence posts that have been in my trailer for a month now.

I'm healing from my surgery. My drainage tube is still in place. I can't have it removed until the amount of drainage is less than 30cc for 24 hours for 2 days in a row. that hasn't happened yet. As a matter of fact, it increased for 2 days, but is now decreasing again, though it was still over 60cc today. I'm not in much pain, and am just using Tylenol to control it. I haven't heard back from my oncologists nurse about my question on the blood thinners. I'm hoping that means I'm really finished with daily shots. I have an appointment with my surgeon on Monday, as a follow-up to my surgery. Maybe by then, they can take out the drain. I'm tired of it.

For those of you who may think I'm doing too much too soon, I'm taking it as easy as I can. I spent hours today sitting in a chair at the farm, watching my grandson play, and the men working in the barn. Yes, I picked a few berries, but they don't weigh much, and I'm sure the gentle stretch is good for my healing arm.

Sunday 4/20/08

Baronial is behind us and I think we will see more events held there. Most comments were favorable, and everyone seemed to enjoy themselves. I spent today doing nothing at all, but reading and laying around. I'm feeling pretty good, just tired.

We are waiting on the electricians to finish hooking us up to the electric.

My incision is tender, and throbs some, but isn't as painful as I feared. My drain is still filling up too much to have it removed yet. I'll be glad when it is gone though. It is a hastle to empty it, and I'm worried about working around the animals with it still in place. Amy has been great to feed them all this week. Mike will help me to feed some this week, after work. Having a drain hanging out of my armpit is a real distraction, and a possible source of trouble around large animals.

Update on my recovery

I'm feeling pretty good. I think I'm going to try and do with just Tylenol tomorrow, instead of the loratab prescribed from MDACC. I don't like the slightly woozy feeling from the hydrocodone, and having to make sure to take it with food can be a hastle.

Tomorrow is Stargate's and Loch's Baronial Championships at our farm. I'm not planning on doing much beyond watching everyone, but I want to be there. My parents will be there too.

The drainage from my incision is getting clearer. It is just pink now, instead of being red, like the first day. There is still quite a bit of it, but it is getting lighter every day. I'm happy with how quickly I'm recovering. I didn't know how bad I'd feel after the surgery, and it hasn't been as bad as I'd feared.

I spent most of yesterday trying to get the new water well hooked up to the power for this weekend, but it just didn't happen. I did manage to get Centerpoint to install the meters for the barn and the houses, but didn't succeed in getting an electrician out to wire things up. Oh well, it will all be done for the next event.

surgery..,

I had my surgery today. The sentinel lymph nodes looked clean, so were left in place. They will be submitted for more extensive pathology, which will take about 10 days. If all is clear, I'll be finished with the cutting, and waiting for the radiation.

I had some nausea when I awoke from anesthesia, but they gave me something in my IV, Sprite, and soda crackers. That took care of it. I had a hard time waking up, cause whatever they gave me for the nausea, made me sleepy.

So far, I've had one pain pill. I'll need to take another tonight to sleep, as my incision is throbbing right now. I still have a drain in place. It will be removed when the drainage is less than 30cc for 2 days in a row. Mike has taken the week off to help take care of me.

Thank you for all your cards, good thoughts, and prayers.

Surgery week...

My cancer surgery will be on Wednesday. I spent a good part of today at MD Anderson Cancer Center. I had blood drawn twice, and met with my surgeon and the anaesthesiologist. Tomorrow, I'm having radioactive dye injected into my breast, to make the lymph nodes in my armpit more easy to see during the surgery. I've scheduled a massage for tomorrow evening. It will be the last one for a while, as I don't think I will want one while I'm healing.

We had dinner with my married son and my daughter in law. My parents went too. It was very nice. We stayed till 10:00. I couldn't believe how late it was.

They are bottle feeding 3 kittens. They are about 2-3 weeks old. Someone dropped them off at the pet store in a paper bag, when they were a few days old. So cute! So tiny!

Slow week

Not too much happening at the farm this week. Rosie's nose is healing up nicely. She and Birdie are still sharing the small pasture, instead of being out with the herd.

We are still waiting for Centerpoint Energy to set the power poles so we will have electricity.

My parents have flown down from Pennsylvania. They will stay with me during my surgery, and help out at home for a while. They will also be here for my niece's wedding on the 26th, and my grandson's Birthday.

We will be sleeping at the farm Saturday night, and having a work day on Sunday, to finish preparing for the SCA event on the 19th.

We will finally be getting our earnest money check back from the first property we tried to buy last year. That will help with the bills for getting things set up to move.

I'm feeling stronger every day. I have just a little fuzz on my head, and I can feel my eyebrows, even though you can't really see them, they are growing back.

Update...

Well... I saw my radiation oncologist today. She didn't give me much specific information because it will depend on how the surgery, and lymph node biopsy go. She did say that it will be 4-6 weeks after my surgery before they start the radiation. They want the surgery to be well healed before they start. I also won't be allowed to use anything on my skin in the area of the radiation treatment. No lotion, or deodorant, not even soap! mostly it is because they mark on your skin with a sharpie marker, and don't want it washed off during the treatment.

That means everything should be finished by mid July, when Mike will be going back to working out of town. He will be helping to outfit a new boat in Spain. He will be assigned to it when it is operational, and will be working 5 weeks on and 5 off as it is rigged.

My eldest son is soon going to be working for the same company as my husband. They have offered him a job that will more than double his current income, and he will have much better, and cheaper, benefits.

My parents are arriving in town this week to be with me when I have my surgery, and will stay for my niece's wedding, and my grandson's fifth birthday. They will be flying down from PA on Thursday.

I heard from my brother in law today. my mother-in-law hasn't been taking care of herself, and is sick. He took her to the doctor last week and was taking her back today. She is doing a little better, but the Dr had wanted to put her into the hospital, and she refused. She weighs the same as my soon to be 5 year old grandson. 50lbs. She was never very big. Only 4'11", and has shrunk some with age, but she isn't eating or drinking enough. This is hard on my husband, because with my surgery next week, he wants to be with me, but also with his mother. One more thing to worry about and pray for.

Weekend update

Mike and I went to a "Green Expo" at the Reliant Center. It was free, and we picked up information on wind turbines and solar power. I like wind, Mike likes solar. One of the people at the Expo said to do both, so on cloudy days, the wind turbines will generate, and on sunny days we will have solar power.

After the expo, we went out to the property, and spent the night. We stopped at Tractor Supply first and bought 2 new gates and 2 more 200 ft rolls of fencing. We still don't have the auger fixed, so today we worked on cleaning up the remains of the first round bale we bought, moving dirt from around the drainage ditches, mowing near the barn, and box blading the area where we will put the jousting arena.

I think I over-did it. My back has been better, but I really over taxed myself today.

Tomorrow I'll meet my radiation oncologist at 2:00. I will know more about my treatment after my appointment, and will post here.

I hate barbed wire!

Yesterday, when I went to feed the horses, Rosie had a big, 2"x2", 3 corner, gash in her face, about 6 inches above her nose. She also had 3-4 small puncture wounds on her shoulder and stifle. One of the other horses ran her into the fence. We had to take her to the vet and have her stitched up.
We are planning on replacing the barbed wire with no climb, horse safe wire, but we haven't been able to afford to do it yet, though we have made a start. I'm buying more fence wire this weekend, and, if we get the auger fixed, we will be working on fences this weekend. We got the forms back from our tax accountant, and we will get a refund this year, and I'm hoping we can get rid of the barbed wire soon.

I'm feeling stronger every day. I'm managing my back pain with Tylenol Arthritis, and my joint supplement. I can do more actual work without having to stop so often. I still can't take some of the other over the counter pain relievers, because I'm still on the blood thinners, but, for now, this is working.

We have Water!!!

The electricians have connected the power to the old well, and we now have running water in the front pasture. I need to get fittings to put a faucet there, and a fence to keep curious horses away from the pipes, pump, and wires.

I took the parts of the auger and brush hog PTOs to tractor supply. They are ordering the parts I need to repair the links so we can use our auger to set posts for fencing, and cut the pastures before the weeds get a head start on growing this Spring.

I'm slowly gaining strength. My back still bothers me, and I have to pace myself, but now I know what is wrong, so I'll do what I have to, to do what I have to do.

I'm meeting on Monday with my radiation oncologist. I'll know more about my upcoming radiation treatment after that.