Thursday, September 2, 2010

Hello everyone:
This update is very late. I just re-read what I wrote last time so that I can be coherent in my ramblings. Yesterday was 5 weeks past the last chemo. I must say I am feeling a lot better. I'm not 100% yet, but I think I am on my way. Two weeks ago yesterday I had the repeat bone scan and CT scan. They both came back clear. There is still something funny in my ribs but they have assured me it is not cancer. So, I will have to get a medical friend to tell me what all of those very long words mean. The internet was not very helpful, just a lot more of very long words. Last week I met with the chemo doctor and he has now put me on Tamoxifen for the next several years (he doesn't define "several"). After that I will be on some other drug for several more years. He tells me I will probably have all of the post menopausal symptoms all over again (I'm thrilled). So far after a week I seem to be doing fine. I still do not have my full energy back. In fact yesterday I went to meet with the plastic surgeon and by the time it was over I could hardly walk back to the car. I think I pushed it a bit too far yesterday. Oh yes, I started walking around the Rose Bowl yesterday and I think was a bit much. We didn't do the whole think, but far enough. But this morning I am doing fine. Right now I am scheduled for more reconstruction surgery at the very end of October. After the first part of the year I will have another surgery. These are all out-patient, so not nearly what I have been through. (This reconstruction stuff sounds like we are building a roadway or something like that.) Anyway, I am doing fine. I am back to work. It is the end of the summer so it is always a slow time. Things will pick up after school starts and it suddenly dawns on people that the holidays are coming. It has been nice to ease back into things slowly. Thank you to everyone who has been so supportive. Your love and prayers have meant a lot.

Monday, August 9, 2010

Well, we are 1 1/2 weeks past the last chemo, and it has been pretty rough. The day after chemo I always have to go back and get a bone marrow booster shot and that seems to be the deal breaker that pushes me over the edge. Each day after that I just got sicker and sicker. It' s not that I am that nauseous, but the total exhaustion and muscle pain gets pretty bad. As that gets worse it gets harder to do anything, like simply getting out of a chair or walking to the bathroom, and I get very winded trying to breath, which then makes my heart rate go wacky. By Monday morning I was in pretty bad shape. Steve had already left for work when I called the City of Hope triage nurse. I could hardly talk to her let alone say my name. She ordered me to call the person that could get to me the fastest and to go directly to the nearest emergency room. I have a very bad impression of emergency rooms (mostly from friends experiences), that I was real reluctant to go, but at that point I knew something had to change. So I called my dear friend, Barbara, and she came and got me and off we went. They took me right in and proceeded to do their thing. Because of the breathing and the chemo they thought I might have a blood clot in the lung (which apparently is not uncommon). But after an entire day in the emergency room and three different tests for a blood clot (and not finding one) they finally decided it was just a bad reaction to the chemo. I had to stay the night to be observed. On Tuesday afternoon I finally came home. I cannot believe how long it is taking to get over this. I have finally come to accept what my chemo doctor said and it probably will take 8-10 weeks to really feel like a human being again. I have to do just about nothing. I walk very slow and don't exert any extra energy, otherwise I start breathing funny again. And it takes nothing to make my leg and arm muscles burn. It's like when you run up several flights of stairs and you get that muscle burn, except all I did was walk down the hall. Anyway, each day is getting a tiny bit better, but it is just slow. So, I am spending my days doing paperwork, going through old files and cleaning out my work contact files, which go back many years. I'm even working on my daughter's wedding pictures from a year ago.
I have several doctor visits along with a repeat CT scan and bone scan, and a couple of other tests to get done before I see the chemo doctor again in 2 weeks. Then we go from there. I am scheduled for more reconstruction surgery at the end of October (this is a work in progress). I am really looking forward to my hair growing back. I am taking hair and nail vitamins. I have never been a vitamin fan, but right now I will do anything to expedite the process and get those follicles to regenerate. Other than that I am just trying to be good and let my body recover from this chemical onslaught. Right now I am glowing (and not because of a halo) and I think my insides are pretty toxic. In fact in the emergency room they always ask you if you are an organ donor. I hate to be selfish, but who wants anything from my body right now. So I politely declined. Thank you to everyone who has called, continued to send cards, and so generously brought meals and done shopping for us. Thank you.

Wednesday, July 28, 2010

I just came back from my LAST chemo and before I begin to feel the effects I am going to update this blog. I actually got a terse e-mail from Michael the other day telling me that I needed to do this. I feel like a liberated woman knowing that I am done with this ugly part. I have really been a rather foul mood for the last week because I felt so awful. It's not that I am sick, but the pain in my muscles, especially in my arms and legs, has been pretty bad. Just walking down the hall makes me want to sit down. It's been very odd. I'm sure that for the next week I will feel the usual symptoms and probably not get out of bed very easily, but hopefully after that we will begin the long climb out of this mess. I asked the chemo doctor this morning how long it would take to feel normal again and he said 8-10 weeks. That sounds like forever, but it is s shorter time than what I have put in so far, so I can do this. I do still have a few things to get done yet. I also finished the (how can I put this politely?) boob expansions this week. That has also not been an overly pleasant experience. I am still sore and I think that will not end until these tissue expanders are out and regular implants are put in. That will be at the end of October. They will take out the port at time also. Today when I met with the chemo doctor he outlined what has to happen next. In three weeks I will go back for a repeat of the bone scan and CT scan to see what if anything is going on in my ribs. I have to get an appointment with my regular gynecologist for a couple of tests and then I will see the chemo doctor in 4 weeks. At that time I will probably start taking Tamoxofin, which is an estrogen suppressing drug. I will take that for a few years and then switch to another drug which he did not name for probably another few years. I will also have regular check-ups with a variety of doctors. But I think I can handle all of this.
For the past 6 weeks I have been going to physical therapy twice a week to get my arms and shoulders working again. That is progressing nicely. I really have full range of motion and can reach just about anywhere I want to. I still feel a lot of muscle pulling, but considering that after the initial surgery I didn't think I would ever be able to do my hair with out putting my head in my lap, we have come a long way. I still have a few more weeks, but then I will be done with that.
So, that pretty much catches everybody up on the latest adventures of Janet. I continue to be amazed and profoundly grateful to everyone. The cards, meals, rides, and prayers have been so appreciated. Thank you to everyone. I will keep adding posts as things change or warrant. I am always willing to talk and or send e-mails. Do not feel that you are bugging me. Thank you so much.

Monday, July 5, 2010

Good evening everyone. It has been two weeks since I last wrote, so it is time to update. The past two weeks have been better. Once I got past the first week after chemo things have evened out. Probably my worst problem is a lot of leg pain. It is rather bizarre. It feels like I have been running up several flights of stairs and that muscle burn that one gets after you have really worked out. In reality all I have done is get up out of a chair or walk across the room. But it doesn't last long. I still do not have very much energy, but I have finally accepted that as a normal side effect. I just try to not over do. I have developed a lingering cough, but I'm not sure that has anything to do with the chemo. I have an appointment next week with my internist, so we will get that checked out. I get my third round of chemo this Wednesday. I am not looking forward to it, but as everyone keeps telling me, I'm half way through. So, I expect to feel crumby for a week and then hopefully get back to whatever my normal is. My last chemo will be in three weeks, the last week of July.
One interesting thing that has transpired is my genetic testing. It actually turned out to not be any testing at all. At the very beginning of all of this I had filled out a family history questionnaire of all of my aunts, uncles, grandparents, and cousins on both sides of my family. They wanted to know when everybody was born, when they died and what they died of and any cancers that had come up. After they went through all of this information the doctors decided that there was not enough statistical probability that this was genetically related to warrant doing all of the blood tests. So the doctor just looked me in the eye and told me that I just had dumb bad luck. Isn't that comforting! Shannon, my oldest daughter went with me to the appointment. He did tell her that she and Laura would need to be diligent in getting baseline mammograms at 40 yrs and then every year after that. But, this also means that I don't need to be overly concerned about ovarian cancer. That is a relief. So, hopefully after this is all over we can just go back to normal life. So things are progressing on schedule. I have been getting some physical therapy to get the range of motion back in my shoulders. That will continue until the end of July. I am actually doing pretty good. I still have some pain from the reconstruction process, but my ability to get my arms up in the air and reach for things is improving. So, that about takes care of everything at this point. As usual, thank you to everyone who continues to send cards and e-mails. I really appreciate the good thoughts.

Wednesday, June 23, 2010

Well good morning. I guess it is time for me update and let everyone know that I am still alive and kicking. I had my 2nd round of chemo last Wednesday. I was really in a foul mood because why would I volunteer to be made so sick. But, never the less we went through with it. The first two days were not quite as bad, but then it started kicking in. By Friday I was sick, Saturday was worse, and Sunday was the very worst. Steve went off to church and I was still in bed when he came home three hours later. I finally drug myself up and retired to the sofa in the family room. As a side light the week before Father's Day is always a wild week. The day of chemo was our 38th anniversary. Thursday was Steve's birthday, Friday was Lauren's birthday and Sunday was Father's day. Needless to say I did NOTHING! Shannon and the kids came over and fixed dinner and I just laid there. I am slowly getting back to what ever normal is. I can do a little driving, but only close by. Yesterday I was feeling especially rotten emotionally. My hair has fallen out, so I am wearing a wig (which I hate), and my eyelashes are falling out. So I got in the car and went to buy some eyelashes and stopped at a wig store (I already have one) and the very kind lady helped me get it on so it actually looks better and feels better. So. . . I guess I can survive this also. Now if I could just see, the chemo has messed up my vision, and being over a certain age with progressive lenses, I can't figure out what part of the lenses I am supposed to look through. And since they don't fit well over the wig, and the frames were falling apart before all of this started, everything is sort of blurry. Anyway, I do OK as long as I do nothing. When I walk down the hall you would think I had just run up a very long flight of stairs. I went to City of Hope yesterday for physical therapy on my arms and shoulders so I can get some range of motion back. I had a driver from church take me. By the time I got home and tried to unlock the door my head was really spinning, and I couldn't even blame it on drugs. It took me about 30 minutes just to get my breathing to calm down.
Today, I am going back to City of Hope to start some genetic testing. They are trying to find out if I have a mutated gene that has caused all of this, since I have no family history. It will be interesting to get the results of this. I don't know how long it will take. So, until the next time, take care, and big giant thank you's to everyone who continues to be so supportive and either bring meals or take me to the doctor. We really do appreciate it.

Sunday, June 13, 2010

Here we are, Sunday night, and I need to update this blog. The last entry was pretty grim. So this one will be a bit more upbeat. This past week has been much better. Each day I have had a little more energy. I have spent a few hours each day out in the workroom. I am still learning how to pace myself, because if I over do things, I really pay the price. It doesn't take much to send me back to the house for a nap . But I have been able to accomplish a few things. I did have a check-up appointment with my surgeon. Every thing looks good. So as far as she is concerned, I will just continue to have check-ups with her. I have another appointment with the plastic surgeon this Tuesday morning. I have gone back to my chiropractor to see if we can get my neck back to where we left off. With all the surgeries, we just about undid everything that we had worked for year & a half to straighten out. So, we are just about starting over.
I did go to church today and I did play for sacrament meeting. Then I went out to the car and took a short nap before choir rehearsal.
This week will probably be a bit tougher. I have my 2nd round of chemo on Wednesday morning. That includes blood work, a visit with the chemo doctor, and then (4) hours of poison being dripped into my body. So, I expect the rest of the week to be spent in bed. But thanks to my dear friends I am sure that I will survive this. Thank you to everyone who has kept me in their prayers and sent cards and brought food. We are very, very grateful.

Wednesday, June 2, 2010

I guess it is time to fill everybody in on the adventures of Janet. At the risk of using foul language, it has been the week from hell. After surviving the port placement I went back on Friday for the first round of chemotherapy. It actually went OK. Very uneventful. But, the next morning I thought I had been beaten up in some gang war fare. I could hardly get out of bed. And this continued for three (count them 3) days. I hardly had the energy to raise my head up. Let alone eat, go to the bathroom, talk, and anything else that a normally healthy person does during the day. I had mild nausea, but the fatigue was almost unbearable. Anyway, by Tuesday morning I thought I might be back among the living. However, I woke up at 4:30 for the usual bathroom trip and my nose started bleeding. I managed to get it stopped and went back to bed. About 10:30 it started again. But, again I managed to get it stopped. But around, I don't know, 1:00 it started again and this time it was not going to yield to my pleas. I ended up calling my friend Pam and my trusty ER doctor friend, Bensen, who came up and packed my nose with disgusting cotton & petroleum jelly. He told me I would have to leave that for 24 hours. HORRORS!!!. Finally last night around 6:30 he called and I convinced him that I would take my chances if he would just come and extract this so I could breath. Everything went well. I kept ice on my nose and drank ice water for the rest of the evening to keep my palate cold. We made it through the night. This morning I could hardly put one foot in front of the other, but I had to eat. It's not like we don't have food around here, but nothing sounds good, and I had no energy. So when Pam called and said that she was taking her mother to IHOP to get breakfast I thought I could do that. Well, we made it half way there and the faucet turned on again. She turned around and headed home. We called Bensen on the way and he met us by the time I got here. Again, I got the cotton packing. He said I would have to have it cauterized. So between my two trusty doctor friends and my other 2 friends we got the job done. I called Steve and told him he would have to come home from work. (He was thrilled) So, this afternoon I was trotted off to the ENT doctor to have my nose cauterized. When I walked into a full waiting room of other patients looking like something dead that the cat drug in this little girl looks at me and says, "what's wrong with her?" My nose was covered with blood, and I had wiped off all of my makeup off so I looked like a wreck!! I had been struggling so hard to breath that my pulse was racing and my blood pressure was also way high. I have to have my blood pressure taken in my leg because of the lymph node removal, so it will always register high, but this was ridiculous. Once he removed all of the packing I could breath better. It is such a relief to have that packing out, that in spite of the fact that I still can hardly put one foot in front of the other, I feel miles better. I have been trying to eat. Bless the Relief Society. Meals just seem to arrive. I know that if I could eat it would probably help my energy level. But eating takes a lot of effort. So, here I am. Hopefully tomorrow will be better and I will begin to feel like a human being again. I don't have chemo again until June 16 (my anniversary). So, I would like to have a good week before they slap me down again. They tell you that the first round is not so bad. I can't tell you how much I disagree with that statement. I can hardly wait until the next one. So, that brings everybody up to day as of tonight. I am off to take my Ambien and Tylenol and hopefully sleep this all off.