Saturday 02/26/11

After dealing with that hacking dry cough for several months, the answer seems to have appeared in a humidifier. Since having that running in the bedroom the past couple of nights, the cough has all but disappeared. One more symptom gone. Yeah!

Now I need to work on the eating again. Yesterday I hardly ate anything. Nothing sounded good and as hard as Shannon tried to tempt me with a variety of foods, I just couldn’t seem to get much down. When we were out doing errands we stopped at IHOP as my usual favorite is Pigs in a Blanket. I was able to eat one but then I was done. We brought the rest home and although I tried to eat another one last night, I could only get down half. Looks like I’m going to have to start taking the nausea medicine so I can have an appetite. According to the scale at the doctor’s office yesterday, I have lost another 5lbs.

Going to just hunker down and watch the snow today. It feels good to be relatively pain and symptom free.

Hugs to all,

Dar  

Friday 02/25/11

Today is 5 weeks since the surgery. I’ve been trying to ease my body into being able to sleep on my side at night. I can be in that position for a few minutes before I have to roll back over to my back. A friend who has/is going through a similar situation said by 8 weeks post-surgery she was able to sleep on her side all night. More patience practice for me.

Lindsay took me to the oncologist’s office on Tuesday to discuss alternative chemo drugs since I had such an adverse reaction to the one on Feb 18. He didn’t have any answers that day, but on Thursday I received a call from the nurse saying they were going to change the protocol and give me two different chemo drugs. I will still be on the every 3 week schedule. (The oncologist had mentioned that some of the protocols were every week.) So my next chemo appointment is March 11. I have to go in on March 9 to have my labs done, but that will only take a few minutes.

I have had some challenges with prescriptions, I think because some of them were given by the doctors in the hospital and now I need my primary doc to refill them. So I have an appointment today with my primary doc. I need to bring in all the meds I’m taking so he has a clear picture of what exactly I’m taking. Shannon is off work today so he will be taking me.

We had such a nice day yesterday. Shannon was home before noon and in the afternoon we ran some errands, went to the pharmacy twice, and even had an early dinner at Denny’s. It felt so good to be out of the house and doing normal things like having dinner out. It was the first time in a couple of months that Shannon and I had been out to dinner or any other meal. My appetite is still not great so I wanted to go somewhere easy, quiet, and predictable. We sat at talked for a long time. I savored being out and not having a focus on the health issues.

While we were at the pharmacy, we bought a super duper humidifier. That was going in the bedroom all night and I was cough free. I’m hoping that the dry air has been the culprit all along and now that there is moisture in the air the cough will be gone.  

Thank you all for your continued support, encouragement, and love.

Hugs,

Dar

Tuesday 02/22/11

Today is a good day. I’m able to eat, get around, and feel pretty good. Wes was here most of the day taking care of chores around the house. He went to the store and picked up some needed items and he went to the post office for me. He is really a huge help and I so appreciate his visits.

Lindsay took me to the oncologist today but we don’t know any more than we did when we arrived. It appears that either today or tomorrow I’ll get a call letting me know when the next chemo treatment will be. There are other drugs that can be used instead of the one that caused me the problem last Friday. But they may be given on a different schedule. So we shall see. I was weighed today and since December I have lost 36lbs. Not a diet I’d recommend and I have to make a point to eat, especially high protein foods. I don’t want to get anemic.

I took care of some business with my district paycheck and the disability insurance. It appears that as of today the disability company still had not reviewed the claim even though they have had it since Jan 25. I know they had some office closures during the weather back east. But I told them today that the 1^st is right around the corner and I need to know what the bottom line will look like. So they are supposed to get back to me tomorrow. If not, I’ll have to be that squeaky wheel.

Thank you for the cards, emails, support and encouragement.

Hugs,

Dar

Sunday 02/20/11

Lindsay came over yesterday and did some house cleaning. I can do things like fill and empty the dishwasher but the heavier cleaning is still just too much.

I haven’t had any ill effects from the chemo but then I only had the one drug on Friday. Sometimes my stomach feels like it burns, like indigestion, but I take a couple of Tums and that takes care of the problem.

I’ve been eating ok. Lindsay made Salisbury steak and mashed potatoes for dinner last night. I ate half and then about an hour later I ate the rest. Really yummy. Now if I could just get rid of this dry cough! Fortunately it doesn’t keep me up at night, but as soon as I sit up it starts. The PA at the oncologist’s office gave me an RX for it so hopefully over the next couple of days it will stop. It makes it hard to talk in person or over the phone. I’ll try drinking some hot tea later and see if that helps.

Shannon is out running errands. Grocery shopping, dog food, pharmacy, and Best Buy (need a new printer).

I got out some random embroidery to keep myself occupied last night and realized that I have forgotten how to do it. It’s been quite a while since I last played with embroidery so I’ll have to relearn the basic stitch. I’m sure there are tons of UTUBE lessons out there on basic embroidery.

I got into my sewing studio today and actually finished a block. It took me a long time cuz it feels like my head is foggy (meds) but I took my time and it came out really well. I really need to get back into doing some of the things I used to do so I can stop obsessing about my body and what it is doing. So today was a major step in the right direction.

Guess that is all for now.

Hugs to all!

Dar

Friday 02/18/11

Today was quite an eventful day.

I arrived at the oncologist’s office right before 9:00am. It took until about 10am for me to get hooked up to the first bag of anti-nausea medicine. There were three bags. Then around 12:30 they gave me the first of the cancer drugs. Within a few seconds of getting that drug I went into an anaphylactic reaction and stopped breathing. They drug me off the recliner onto the floor and gave me an epi pen and a few other things. I woke up asking why I was on the floor while looking at four people hovering above me. I was only out for a minute or so. They got me up and back into the chair and then gave me the other cancer drug that I had no problem with.

I have an appointment with the oncologist on Tuesday to talk about what drug I will be using as an alternative. It appears there are a number of alternatives but most people tolerate the one they gave me. The PA (Physician’s Assistant) who basically runs the chemo room said I probably wasn’t allergic to the drug itself, but to the solvent that is used to make the drug usable in an IV delivery system. She said in 9 years she had never seen someone have such a sudden reaction. She just happened to have an epi pen in her pocket that she thought she might need on another patient who was getting a blood transfusion. The Universe works in mysterious ways.

Lindsay picked me up around 5pm and we went to the pharmacy to get some more prescriptions.

I feel ok now. Came home and ate dinner. Just feeling a bit fatigued. I don’t feel sleepy just whipped.

So I’m gonna take it easy the rest of the evening and the weekend.  

Hugs to all of you,

Dar

02/17/11

Yesterday was better than the day before and today was better than yesterday. I’m able to eat and my digestive system seems to be working fine. My legs and feet are still fluid free. I have been taking my temp about every 2 hours and no fever. So far, only one Motrin today.

Tomorrow is the big day. I already have the prescriptions for the potential side effects. I took two pills this morning and I take two tonight. Tomorrow and Saturday I repeat the dosage. I have two other prescriptions, one that I can take every 8 hours and one that I can take every 4-6 hours. I am going in with the intention that I won’t need them and that I will tolerate the chemo with little if any side effects. I’ll let you know.

Both Lindsay and Wes have the cold/flu that has been going around so they have not been over. Sure do not need to get that. Lindsay will be over tomorrow to take me to the chemo appointment and then she will pick me up and take me home. I’ll be taking a quilt that Betty made for me, a jacket, a book, my phone, charger, and ear buds, snacks and iced tea, pens, a notebook, meds I take during the day, lotion and Chapstick. I’ll be there for 5-6 hours so I want to have things available. The gal who I spoke with on Sunday will also be there so I’m sure we will talk. I just don’t want to intrude on her routine and I may want some alone time so I want to have stuff with me.

Any and all prayers and positive thoughts (and chanting, Cheryl J) will be most appreciated.

Hugs,

Dar

02/16/11

I woke up Monday night having quite a bit of abdominal pain so I was back on the Vicodan for a couple of doses. I seem to handle the pain better during the day. My legs are still fluid free so I am really grateful for that.

Yesterday Lindsay came over around 1:30. I am not comfortable taking a shower alone in the house, so I was able to get that done while she was there. I don’t need help anymore, I just like to have someone in the house.

We ran some errands and then she took me to the surgeon to get a final post op look at my porta-cath. We had the heater on in the car and I was wearing a pretty heavy jacket so when the MA took my temp it was over 102. There was no reason for having a temp. So I took off the jacket and a little while later she checked it again and it was 103.4. The surgeon said the porta-cath looked good. He took out a few of the dissolving stitches that hadn’t dissolved yet and then I was discharged from his care.

I have lost 15 pounds since the last visit and I’m sure almost all of those 15 pounds was the fluid in my legs. My appetite is better and I have been eating healthy thanks to Shannon’s cooking.  

We went to Walgreens in Apple Valley to buy a thermometer but when I tried it in the car it wouldn’t work. So we went to the Walgreens on Bear Valley and exchanged it. The second one worked fine. And my temp was between 97 and 98. I checked it again this morning and same result. So no fever for me!

I have been able to get up and down from bed so I haven’t had to wake Shannon to help me. Everything I can do independently is a cause for celebration.

Hugs to all of you and a big thank you for your support, prayers, and love.

Dar

Tuesday 02/15/11

Yesterday was another good day. The swelling in my legs and feet was completely gone. I have some muscle soreness in my thighs and calves, but I think it is my body’s way of dealing with the loss of all that fluid. This morning, I again have normal legs and feet. Hopefully that is one more issue that has been resolved.

I had not taken a Vicoden since Sunday and I had hoped I could get by on Motrin, but last night I had some severe pain around the incision site. So I ended up taking one around midnight and another around 4:30 before Shannon left for work. Guess I need to slow down my mental idea of healing time and listen to my physical cues better.

Yesterday I ate a whole piece of peanut butter toast, half a tangerine, and a protein drink for breakfast, a whole egg salad sandwich for lunch, and some mac and cheese later in the afternoon. Shannon came home and made yummy garlic, butter, salmon and green beans. It was so good and I ate everything on the plate. That is quite an improvement in my eating.

Wes was over yesterday and took care of some house chores and ran some errands. He said he’d be back on Wed to do more. He has been so good about taking care of the animals and running the errands that need to be taken care of.  

Today Lindsay will be taking me to the surgeon who inserted the porta-cath for a final post op appointment. She’ll be over around 2pm and the appointment is at 4:30. Those dirt roads are a challenge when recovering from abdominal surgery. Lindsay bought me a little pillow that I hold tight against my abdomen as we bounce and sway the 3.5 miles to pavement. I never paid too much attention to the dirt roads before, but now the conditions of the roads are in my mind as I prepare to go to appointments.

I’m still learning about this blog. I get your comments on my phone and I answer from my phone. I’m not sure if my replies go to the blog or to your email or what. I have to ask Shannon how that works.

Also, I have had many invitations to Facebook that I have confirmed. I still do not use Facebook that much so please know that I am not ignoring you, I just haven’t completely learned how to navigate it very well yet. I go to it about once a week and read the posts, but rarely comment. I will try to get more comfortable with using it during the next couple of weeks. But thank you to all who have placed a comment there and on the blog. I really appreciate your support and encouragement.

Hugs,

Dar

Monday 02/14/11 6:30am

I didn’t write yesterday because I was a bit frustrated with my legs filling up with fluid again. But I figured out a way for me to recline on my chair with pillows under my legs and feet so they were higher than my heart. That seemed to help because I have minimal swelling this morning. Hopefully this will last through the day.

I went all day and night without Vicoden, just Motrin. I folded some clothes, emptied and filled the dishwasher, took a shower unassisted, started the second book by Alan Alda, and watched some TV.

I also finished all the applique on my Pine Burr quilt top! Now I need to have the energy to quilt it and I should have one entry to the San Bernardino County Fair!

Yesterday I spoke with another woman over the phone who has ovarian cancer. She goes to the same chemo center I will be going to and in fact she is also going this Friday. She is on number 4 of the 6 scheduled treatments every 3 weeks. I asked her how long it took for her to feel recuperated from her surgery that she had in Nov. She said 6-8 weeks! That was so good to hear as I was wondering why I wasn’t better after 3 weeks. Now I can really relax and just let the healing happen. She said she has minimal side effects from the chemo. She walked me through the chemo process. They first give you 3 different medicines (through the porta-cath) to counter nausea, then there are 2 different chemo meds that are given in IV bags. One of the bags takes about 3.5 hours to administer. The whole process takes 5-6 hours. They also give you nausea meds to take home. She said she wakes up the night of the treatment and feels nausea, takes a pill, and goes right back to sleep. For her the 3^rd day is most difficult with fatigue and nausea, but the meds help. Other than that she just feels more tired than usual. She said her hair started falling out at about the 2 week mark. She went and had it shaved off. She said she was fine until she sat in the chair and then she lost it. Everyone in the shop was crying. She bought a wig but only uses it when she goes out. Usually she wears a beanie, including at night, because she said her head gets cold. Her grandmother and mother live down the street so they have been taking care of the house and getting her twin high school students to their events as well as her other daughter who is about 10, I think. It will be comforting to have her there on Friday for moral support.

I am going to enjoy each day that is better than the one before.

On this Valentine’s Day I want to especially thank you all for your love and support. When I start to feel down, I think of all my friends and family who continue to share their love with me. I am so grateful for each and every one of you.

Hugs,

Dar

Saturday 02/12/11

I have to say that this has been the best day so far since the surgery. I think the egg salad sandwiches and meat yesterday turned a corner. The fluid in my legs has diminished greatly from last night. My feet and ankles seem to be filling up again as they do each evening, but the fluid doesn’t appear to be as bad as it has been. Shannon is making stir fry beef for dinner and I had half an egg salad sandwich and some mac & cheese for lunch. I am hoping that this swelling issue will be behind me over the next couple of days.

I even felt good enough to get out that applique project I mentioned in a previous post. I worked on it for a while and I will get back to it again after dinner.

I spoke with a woman (friend of a friend) who has been dealing with this cancer since 2009. It seems she has had a really tough time with chemo and some significant side effects. That really scared me. After finally feeling better from the surgery, to think of the potential chemo side effects is not pleasant to contemplate. But I have to remember that everyone handles chemo differently and I may have a much different experience than she had.

 Shannon downloaded a couple of Belleruth Naparstek MP3s…Fighting Cancer, and Chemotherapy. They both have guided meditation as well as affirmations. I’ll be listening to them every day. In addition, I write my own affirmations and fill at least 2 pages per day. The only thing I can do is be in this moment rather than worry about next Friday. But I have to admit it is taking focused attention to keep it going.

Thank you, Heather, for the air purifier recommendation.

And thank you all for your thoughts and prayers.

Hugs,

Dar   

Friday 02/10/11

Another day better than the day before. I realized that I had been so focused on eating, that I had forgot to pay attention to taking in fluid. So yesterday I make a point of drinking more. I made iced tea in the iced tea maker using Celestial Seasonings teas. It had a good effect in that my leg swelling had gone way down this morning, but it meant Shannon had to help me up three times in the night. At least he didn’t have to work today. But I was able to get out of the bed by myself this morning.

My legs swell up again during the day, which is uncomfortable but not that bad. Shannon made pork chops and rice for an early dinner. It was so good. Gotta get that Albumen level up. I cut way back on the Vicodan and I have switched to Motrin. More progress.

I finished a book today called the “Horse Whisperer” that I had started prior to the surgery. Nice to read a fun book for a change rather than always “mental” books.

I have a quilt top I started about 6 years ago. Just needs some applique so I’m gonna work on that now. Didn’t make it into my sewing room today, but perhaps tomorrow.

I’m so grateful for your listening.

Hugs,

Dar

Thursday 02/10/11

Yeah! I was able to get out of bed by myself this morning! I still had to wake Shannon up in the middle of the night to help me but progress is progress. I still have swollen legs. I’m making an effort to eat. I think all the meds I’m taking are affecting my appetite. But I know that nutrition is directly related to healing. Had a slice of peanut butter toast this morning and an egg salad sandwich for lunch. I usually start eating the sandwich around 11am and finish it by 2pm. Then I’m already thinking about what I’m going to be able to eat for dinner. Still being full from lunch doesn’t help. I have to eat early because if I wait until Shannon gets home I’m too full to go to bed at 8 or 8:30. He tells me to just stay up and wake him when I need to get the pillows arranged for my back and for my feet elevation. But I hate to have to wake him so many times.

Wes came over today and did some chores and ran errands for me. He cleaned out the cat box, took out the trash, cleaned out the dog’s water bowls outside, watered the plants, and a few other things. Then he went to the PO Box to get the mail and picked up a prescription for me. Nice to have him close by in Wrightwood to drop by every couple of days to take care of some things. Thank you so much, Beano!

In addition, he ripped the sleeve of his shirt so I had to go in and sew the seam on my machine. I had not even been inclined to do anything in there since the surgery. But just sewing that seam reminded me of how much I like sewing. I’m planning to get in there for at least an hour tomorrow and work on a block I started in Dec. I’ve had enough sitcom reruns for now.  

We still need to find homes for the 3 Chihuahuas. Please keep checking around.

We want to get an air purifier to filter the dust and pet hair. Does anyone have any recommendations?

Thank you all for your comments, support, encouragement, and love. I am so grateful for the sense of community.

Hugs,

Dar

Wednesday 02/09/11

So far this has been the best day. I can do almost everything I need to do independently except for getting out of bed. Shannon has to get up once or twice each night to help me up. I am hoping that I’ll be able to do that on my own soon. I’m looking forward to being able to sleep on my side again. Since Dec I have only been able to sleep on my back with my head raised by several pillows.

I have been working on eating more. I made egg salad and had a whole sandwich yesterday for lunch and another half for dinner. The egg whites are supposed to be one of the best sources of albumen. I’m also eating tangerines, baby oranges, pink grapefruit slices, and drinking grape, apple, pink grapefruit, and orange juices. Also adding more cheese. Between mindfully eating and the plethora of meds, my body seems to be responding in a positive way.

I’ve spend the past couple of days in my chair with pillows propped up on the foot recliner so my legs are higher than my heart, watching reruns of sitcoms, listening to meditation media, reading, and walking back and forth to the bathroom. I’m going to try to start back working in my sewing studio next week. It will be good to have another activity to add to the day.

Thank you all for your support, encouragement, and love.

Hugs,

Dar  

Tuesday 02/08/11

Yesterday Lindsay took me to the oncologist to get blood work. The porta-cath is supposed to be a much easier access to getting blood out and putting medicine in. Even with that, it took two nurses to get mine going and two sticks. It feels like what I would imagine a bee sting would feel like. Each one of these new experiences brings a sense of fear and loss of control. But I know in my head that these things are needed to keep me going. My amygdala goes into hyper drive and my limbic system takes control. It is not a good place to be. So I need to meditate more and listen to positive affirmations to push the fear laden thoughts to the back of my mind. Each improvement in my health brings me closer to feeling up to the challenges to come.

After the oncologist, we drove down to UCI for a post op checkup. The biggest issue was that my legs and feet were so swollen I could barely bend my knees and it felt like I was walking on tree trunks. Hard to get dressed independently. The doc prescribed Lasix and potassium, and to keep my legs elevated. One of the reasons for the swelling was because my Albumin level was 1.9. It is supposed to be around 4.0. That all has to do with diet. I have been careful not to eat much meat because I thought it would be harder to digest, but the doc said I need to eat more meat. (Sorry Cheryl). I also have not been eating much, partly because of not much appetite, and partially because I did not want to overload my digestive system. So last night I had half a meat and cheese burrito and then put two pillows under my knees and legs. I was amazed this morning when I woke up and felt my calves jiggling. My legs and feet are half the size they were yesterday and I haven’t even started the Lasix yet. Today I plan to spend a lot of the day with my legs elevated. Hopefully by the weekend they will be back to normal again.

I’m going to try to clean up the mail that has accumulated on the dining room table today and little by little work through the clutter that has mushroomed. One step a day.

Thank you all for keeping me in your thoughts.

Hugs, Dar

Saturday 02/05/11

It’s been a few days since I wrote. This healing business takes a lot out of a person. Last Tuesday Betty came over to Lindsay’s house and we went for a pretty long walk outside. I think I overdid myself. Had sore muscles in my legs and hips. That made getting up and down from chairs and the bed very difficult.

Lindsay went to work on Wednesday so I flew solo all day. Thursday Lindsay took me to the surgeon who inserted the porta-cath for a post op. Everything looks good. Then we went to the oncologist. I start chemo on February 18. I will be going once every 3 weeks. On the day I go I’ll be there for 5-6 hours. He anticipates 9-12 sessions. They will monitor my blood levels closely to make sure the drugs are working.

Lindsay took me home Thursday evening. It was a bit of a challenge to get situated but Shannon was home around 7:30pm. Wes came over yesterday morning and stayed the day with me. I think it was the turning point. Today my muscles didn’t hurt, I was able to eat, I can get up and down from the chair more easily. My legs, ankles, and feet are really swollen so Shannon spent hours just rubbing them. It is so calming. I don’t know what I would do without him. He has had to get up a couple of times during the night to help me up, yet he never complains or acts like it is a burden. Today he helped me move from chair to chair, with & without pillows, to find some position in which I could be comfortable.

I’m keeping up with the meds but it is getting more difficult to deal with so many on my stomach. Hopefully I can start to wean away from the pain meds. It is a balance.

Lindsay will pick me up on Monday to take me to the oncologist for blood tests and then we will be going to UCI for my post op visit from the surgery.

I’ll try to be better with this blog. There are just some days that even typing seems overwhelming. But I think I’m on the mend.

Thank you all for keeping me in your thoughts. Hugs, Dar