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.

Friday, May 28, 2010

Well, I need to update everyone. This started out to be a confusing week because they had the start of chemo before the placement of the port, which was backwards. But after several phone calls we got that straightened out. I had the outpatient surgery for the placement of the port yesterday. You would think after all of the past 6 weeks, I would be a little more realistic about these 'little procedures'. But I am still not very smart. I went in yesterday morning @ 8:45 am. The surgery itself was only about an hour. But when I came to after the anesthesia my neck has never hurt so badly (and I know what neck pain is!). So after several doses of pain medication (and as Barbara says - drawing circles on the ceiling) we finally got it somewhat under control. But because they had given me so much drug, I had to stay for a little while longer. The port sits right below my collar bone off toward my left arm. There is a small catheter which exits the port and is threaded into an artery that goes to my heart. All of this is under the skin, so you can't see anything except a new glued shut incision, a lot of bruising, and a bump in my chest. But I guess in order to get there is runs down my neck. And I guess they twist ones head to the side to make all of this happen. No wonder my neck hurt. One of the nurses said they quite often have patients complain about the pain. (Really??) Anyway, after I got so that I could get dressed and into a wheel chair I came home. I went straight to bed and stayed there pretty much until I got up this morning. I made sure I was adequately drugged up for pain and sleep last night. I guess I was sleeping so soundly (and snoring) that Steve had to go sleep in the other room. How embarrassing!!. Anyway, the pain is better today. I imagine it will continue to get better each day. Steve took the day off work today. We went to run a couple of errands this morning and by the time we got back I just collapsed into bed again. It is now about 12:40 and I finally got up. Just in time to go for my first chemo treatment. I have to leave in about an hour to go back to City of Hope and get shot up with some disgusting cocktail of chemicals that is going to make me better. I sure hope so. Anyway, it is a holiday weekend so I get an extra day to get my act back together. So, I will re-post after this next new adventure. Thank you to everyone who continues to send cards and food. And to Barbara who spent the whole day at the hospital with me, got my prescriptions filled, and got me tucked into my own bed. THANK YOU.

Wednesday, May 19, 2010

Well, just a quick update. A few things have changed. The powers that be decided that they didn't need to do the bone biopsy. HURRAH!! ( I don't know how to spell that). Instead they are just going to start chemotherapy, and then I suppose re-scan me to see what if anything has changed. Because I had lymph nodes removed from both sides I am never, for the rest of my life, supposed to have IV's, blood draws, blood pressures, or injections of any kind in my arms. So they have to put in a port to take care of all of these issues. I thought that was going to happen today, but it didn't. At this point I am scheduled to have the port put it next week (which they informed me today is a surgery with general anesthesia) and then start chemo. So, next week will be an interesting week. Each week continues to get better, although I can't believe how slow it is. I still need my nap each day, but I can generally get by with only one per day. The pain level is going down, except for these little boob fills. This week I decided that I would only get half of what I got last week, and it is still very sore. I am not going to get a fill next week. With chemo and a minor surgery, I think that is enough for one week. So. . . that about catches everything up. As always, thank you to everyone who continues to support me. I really do appreciate all of the cards, telephone calls, rides to the doctor, and kind words. They mean a lot.

Tuesday, May 11, 2010

Well, it is time to update. Because some of the lymph nodes that were removed during my surgery were positive for cancer, I was scheduled for a CT scan and a bone scan. I had those tests last Tuesday. On Friday Dr. Kruper called to tell me that the CT scan was "unremarkable", but the bone scan was "troublesome". She was somewhat confused because of the contradiction in the two tests. The bone scan was suspicious for bone metastases throughout the rib cage and there was a small focus on the left iliac wing (my hip). So, on Monday I met with Dr. Somlo. He is my oncologist. He also expressed concern over the reports. So, I have to have a bone biopsy, probably on my ribs. I am so thrilled. I am waiting to hear when this has been scheduled. It will probably be within a week. Dr. Somlo also needed to get additional tests on the original tissues to determine if this cancer is "estrogen receptive". Once he has that information, along with the bone biopsy, they will tell me when chemotherapy will start, what kind it will be and how long it will last. So, we are at a hurry up and wait game again.
I am feeling better. I have gone back to work, albeit very slowly. Yesterday I made (1) pillow and today I made (3). Such progress!! But I am trying to get back into the swing of things. The gal that works for me has been marvelous, but we are REALLY behind. All of my joking through the years about draperies and pillows not being life and death is still true, but the clients don't see it that way. But, I guess that is what keeps me in business.
I went in today for the first "fill" of my tissue expanders. That is an interesting experience. For all the women out there it feels like I am totally engorged and it's not getting better. They keep assuring me that the discomfort will improve, but since this whole thing cannot be finished until I have completed all of the chemo and whatever radiation they are going to give me this is going to be a long process. For the time I have to live with these bumps under my arm. I came home and took a heavy dose of Advil and then took a nap. I did try my hand at driving today. I needed to get to the bank, and since it is only a few blocks down the road, I decided that would be my first outing. As long as I didn't move too fast or jerky I got along fine. Anyway, thank you to everyone who has been by my side and made many trips to City of Hope with me. This is when friendships really mean the most. Thank you to everyone.

Thursday, May 6, 2010

I know it has been too long since I last posted, so I will try to update. There really isn't much to tell. Each day the past week has gotten a little bit better. The pain level is now down to quite tolerable. I am not taking any pain medication during the day. I am back to taking my usual Advil PM (which I have taken for years) at night. It just helps me sleep. My arms are getting better. The left arm is doing quite well. I can get my hand above my head pretty well. The right arm is still a problem. That was the arm that they fished around for most of the lymph nodes, and as my surgeon said, "we couldn't save every nerve, so we have to sacrifice at least one." So I just keep trying to do my little exercises to walk my hand up the wall and try to stretch the nerve and muscle out. I know it will get better, but it is slow.
I did have a bone scan and CT scan on Tuesday. They were not as ugly as I was afraid they were going to be, but it was just a long day. Anyway, I do not have any results back from the doctor. I called this morning, but as of this evening, I have not heard anything. So that information will have to wait for the next post.
Laura has been here all this week. My mom was here last week. It has been very humbling to realize that you need someone with you to do the most mundane tasks. Obviously the Lord is trying to teach me some humility ( and patience and a dozen other attributes that I am supposed to be learning). But it has been really nice to have someone here while Steve and Michael and Shannon have been traveling around Spain and France. Michael has set up video conferencing, so every couple of days in the middle of the afternoon I get a text message to log onto the computer and he turns on the cameras and we talk. They are having a marvelous time. I just wish I was there, but that will be another trip. So, until the next post, thank you to everyone who has called, sent flowers and food, and just generally be a great friend. Thank you.

Monday, April 26, 2010

Well, here we are on Monday, April 26 at 4:30 in the afternoon. I just got up from my second nap of the day. I just go from sitting in the big leather chair in the family room to laying on my bed. After a couple of hours in the chair I am exhausted and need a nap. What a life!!
Last Friday I went back to see Hillary in Dr. Tan's office. She took out the last two drains, one from each side. I felt like a free woman. And it was not nearly as bad as earlier in the week. Each day continues to get a little bit better than the last. The pain level is getting better. I called a doctor friend last Saturday and she wrote me a new prescription for something that could be taken along with the Motrin. Between the two of them things are a lot better. If I just stay on top of it, the pain stays under control. So that is what I am trying to do.
Shannon got the last report pretty accurate. My appointment with Dr. Kruper went very well. The staging is all right there. I am just waiting for the oncology people to call and tell me when they want to see me. I have an appointment next Tuesday for the bone scan and CT scan. They wanted to also do the first fill of these little mini boobs that I have, but considering how sore they have been, I have opted to hold off for a couple of weeks until after the scans are finished. Then we will tackle that little job.
I wandered out to the workroom this morning. Reina was out there busily working away. Everything looked good, so I told her to just keep going and I came back in the house. So much for running a business.
Steve, Michael and Shannon are all touring Madrid right now. I get e-mails from them everyday with their updates. Michael is sending back pictures for me to see. So in some ways I feel like I am there. However, this is no substitute for the trip that I will take when this is all over. Steve has promised me that we will go back. That is my incentive to lick this thing and get better.
I can't end this post without thanking everyone for all of their kind thought, prayers, food, telephone calls, cards, more food, visits, and general concern. My good friend, Deanne, came and moved in last week. I could not have done it without her. I don't know what I thought this would be like, but it has been so much worse, that without her constant help, I would, I don't know what, not have made it. She has gone home now, and my mother is here for the rest of this week. I still cannot dry my back out of the shower or reach the top shelf of the refrigerator, or get a glass off of anything except the bottom shelf. I have to flip the hangers to get my clothes down from the closet. I never thought about this when I put those closet poles that high up. I have to start doing some exercises to get these muscles to stretch out. It is just so painful. But I will keep working. So to everyone. . . . THANK YOU. I am getting better.

Thursday, April 22, 2010


Mom said it was my job to post till I leave tomorrow morning, then she will take over...I've been so busy this week getting ready to go out of town. My mom is doing better. Her main complaint still is fatigue and total lack of energy. She can get up and do a few things, but gets worn out very easily. She will most likely get the remaining 2 surgical tubes taken out tomorrow by Dr. Tan. She had a good appt. with Dr. Kruper on Wed. morning, and found out more details about the cancer. I honestly can't remember everything she told me, but she'll fill in more when she posts again. Turns out they took out 9 lymph nodes. Two of them tested positive for cancer, so it had spread on one side, but we already knew that. One breast is considered stage 1, the other breast is considered stage 2, but the lowest level within stage 2 (the one closest to stage 1), so that was decently good news. She has a bone scan and CT scan scheduled in 2 weeks, and from those results we will know the extent of how much the cancer has spread, if any beyond those 2 lymph nodes. Dr. Kruper was very positive and optimistic--she's really hoping that because the pathology indicated that the tumors were small, and the lymph node cancer was small, that it hasn't gone beyond the lymph nodes. How's that for a professional explanation? She has a referral to talk to the oncology people about starting chemo, and will know more about when it will start and how long it will take after she talks to them.

My dad, my brother and I are leaving in the morning for a 2 week trip to Europe--my mom was supposed to go. Now I'm going. Before you judge, she is insisting that the trip not be canceled, and that we go and have a good time :). She has been in very good hands all week long with Deanne Syphus, and my grandmother got in town this afternoon and will take over for Deanne, and then my sister comes in another week to take over from there. We get home on May 8th, late at night. Hopefully the care giving will get easier, and will mostly be for taking her to medical appointments.

Thank you to everyone for your love, concern, prayers, flowers and meals--she appreciates all of it. The next post will be by the lady of the hour (or year)--my mom.

Monday, April 19, 2010

A little less encumbered

Mom went for a follow-up with Dr. Tan this morning and he took out 5 of the 7 tubes that were coming from her body. I wasn't there, but apparently, it wasn't pretty. Deanne said my mom about passed out because it hurt so badly, but at least they are out. She still has 2 drains left, and hopefully they will come out at her next appt. with Dr. Tan on Thurs. It's kind of a pain to situate 7 awkward tubes every time she needs to get up or use the bathroom. We spent the afternoon with her yesterday (Sunday), and when I say "we" that includes my 3 "I don't care if you are in pain, I still want to lie next to you in your pretty silk bed" kids. They were a little crazy and ran in and out of the bedroom all afternoon, trying to coax Madden the cat out from underneath my mom's bed...the cat was smart and didn't budge. Neither did my mom much. Actually, she's doing better and better each day. She took a shower yesterday, with much wet help from Deanne and is feeding herself today.

Saturday, April 17, 2010

Home from the hospital

What started out as going to the hospital to cut my mom's pancakes and feed her turned into an all day process of getting her home and comfortable. When I got there this morning I found out that the discharge papers had been filled out at 7 AM, and that we were just waiting for the home health service to be set up, and then she could go home. All ready? Despite the pain and fatigue, she'd had it with the ticking wall clock and loud hallways, so she was OK with leaving. Pam, Deanne, and I learned about changing the dressings and emptying the 5 surgical drains. Dr. Tan came to check the surgery area and said that it looks great, and she has an appt with him on Monday morning--hopefully he will take out the 2 additional tubes that are depositing pain medication sub-dermaly to her chest, and maybe even a few of the other drains. Let's hope. It's a real pain for everyone involved to deal with 7 different tubes coming out of a small area every time she wants to stand up, go to the bathroom, or go for a short walk. But I guess that's part of the process. I drove her home and we got her into her own bed--thank you to her friends that set her up with the wedge, stool, and several other devices that have already been very helpful. She seems much more comfortable on her own mattress. As long as she takes the pain medication on time, the pain is tolerable. This morning, when I asked her how long it had been (the amount of grimacing was going up), she said 5 1/2 hours--I chastised her and called the nurse to bring the pills. Much better. She's still itchy and trying to figure out what it may be a reaction to, and is very exhausted most of the time. I think that may get better as she starts to eat more. She also sees black spots floating by in front of her, and to watch her reach out for them and swat them away is like watching someone who may be hallucinating. It's quite amusing. She knows she looks a little crazy doing it, but she's so convinced that the floating spots are there, that she says, "see, it's right there" while reaching for it. Gerry Bowns, her good friend and ophthalmologist, gave this "condition" a name which I can't remember. Guess it's normal and she's not crazy.

The reason my dad doesn't appear in this story is that he's sick and was running a fever all night, so he didn't come to the hospital today. My brother came to the house bearing Jamba Juice and some good laughs. She's in good hands with Deanne there, and will hopefully have a good sleep tonight, with a little help from Ambien.

Friday, April 16, 2010

A few hours make a difference...

In the few hours between when I left the hospital this morning around 10, and when my dad and some other friends got there after lunch, the fog lifted. I found out that sometime in the middle of the night she had been given Benadryl because she has been so insanely itchy all over. She was still itchy this afternoon and she is wondering if it's an allergy. Well, she said that the Benadryl immediately made her very, very loopy. Guess that's what I saw this morning. I joked that her eyes looked like those of a 2 day old baby--each one focused on a different point in the room. By this afternoon, she was able to lift both arms, and was actually able to use the bathroom twice, and walk up and down the hall once, grumbling all the way. She's on a regular diet now and is trying to eat a little. The pain is intense, but the Percocet works well. She's disconnected from the IV and is receiving all meds orally now. Above all, she is very tired. She hadn't slept when I left the hospital at 1 AM, and I don't think she's slept all day, so hopefully tonight will be better. She will most likely be going home tomorrow. Her friends have her set up with all sorts of medical equipment to make showering and bathroom activities much easier. Deanne will be at the house with her when she comes home.

Amateur post-surgical report...

My brain is fuzzy with fatigue, so let's hope this is coherent. I just came from the hospital, and my answer to your question, "how's your mom?" would be, "she's been better." Truthfully, she's quite miserable. Here are a few more details about the surgery yesterday...she and my dad got to the hospital around noon to check in and begin pre-op. Their long-time closest friends Paul and Linda Duncombe arrived shortly after, and I got there around 1. We joked with my mom a bit and waited for her pre-op procedures to be completed. The worst part was having radioactive dye injected into both breasts, 4 injections per side. You can ask her where they injected it, if she can remember. The dye is blue, and if it seeps out into the lymph nodes and remains blue, there is no cancer there. If it turns pink in the lymph nodes, it has spread. Apparently this was a VERY painful procedure, which led us to wonder, "couldn't that have been done under anesthesia at the start of the surgery?" Whatever. The first 2 1/2 to 3 hours were done by Dr. Kruper, a very capable breast surgeon that looked like she was 10. But apparently she's the best. She did the breast removal and lymph node removal. She was the one that came out and told us at 4:30 that the first part was done, and that they had indeed found cancer in the lymph nodes on the right side, which is the side that had more cancer anyway. That automatically would put her with at least Stage 2. They will do a CAT scan and bone scan this week to see if the cancer has gone beyond those lymph nodes. I think then they will be able to determine for sure her "stage." Dr. Kruper seemed very surprised that the pathology report was positive on those lymph nodes because they didn't feel cancerous in her hands (she said that sometimes they are very hard and it's obvious they have cancer) but my mom's weren't that way. Hopefully they caught it in the lymph nodes at the very early stage, but we'll know more this week. Overall, Dr. Kruper seemed very positive, and said that despite the lymph nodes, the prognosis is the same as before...good. What she did say was that the lymph node issue means that most likely she will have more chemo cycles--possibly 8 cycles instead of 4. We aren't sure what "cycle" means or how many sessions are in a cycle, as it's different for everyone. That part's a bummer.

Dr. Tan, the plastic surgeon, took over and put in tissue expanders, which will keep the tissue stretched out and maintain the space in there for the implants which will be put in eventually. Can't remember when...after chemo I think? The tissue expanders are painful, especially when they add fluid and expand them. They are under the muscle, which makes it hurt more. I've been told that sometimes the muscles twitch and it can be painful. But he took another 2 hours, and came out and said it all went all planned. The surgery took from 2-6:30 PM.

She has 5 drains coming out of her chest/armpit area, which are a big pain for her. She will probably have those for a week. As of this morning she had the automated leg compressors going still. An IV in her arm, and "help" with going to the bathroom. Needless to say, not too comfortable. The pain is significantly more on the left side, which confuses her because 4 lymph nodes were taken out on the right side. She has severe bouts of nauseousness and had already thrown up once this morning, and sent me running down the hall to beg for a bucket while I was there. Luckily nothing came up that time. She had a headache while I was there, and even had Michael and I quickly de-blanketing her late last night due to a hot flash! As of this morning, she's still very groggy, and time is passing slowly. She kept asking what time it was, and when I'd tell her, she was incredulous. She can push her pain med button, but unfortunately it drugs her and she's in a fog. How's that for not fun? She said repeatedly, "this sucks."

Despite all this, the word on the street is that she'll go home tomorrow. We have lots of help set up to be there with her...there will always be someone in the house for at least the next 3 weeks. She will be just fine, but has to make it through these difficult days. She's able to raise her right arm now, which is helpful for scratching itches and using chapstick--all things that required help last night. The left arm is too painful to move yet. I'm going back over about the middle of the afternoon, as are my dad, Pam and Deanne. So I might add some more information tonight, if I'm awake :).

Too tired to update...

It's almost 1:30 AM and I'm just home from City of Hope...all went well and my mom is in her recovery room, trying unsuccessfully to sleep. She came through the surgery well, as reported by Dr. Kruper, her breast surgeon, and Dr. Tan, her plastic surgeon. I am too tired to post all the details of the day, but will do so hopefully tomorrow. The short of it is that everything was as suspected on one side (my notes are down at the other end of the house; will be more specific tomorrow), but the cancer had moved into the lymph nodes on the other side. Dr. Kruper was very surprised that the pathology report showed it in the lymph nodes because there was very little other evidence that it was there, so hopefully it's at the beginning stage...they will know more exactly this coming week with a CAT scan and bone scan. Dr. Kruper said the prognosis is still very good and sounded very optimistic. I will post more tomorrow. Thank you to all for the well wishes and support.

Wednesday, April 14, 2010

So, here I am on the night before the surgery that is going to change my life forever. It's a good thing that this past week has been really busy with work. It helps keep my mind on something besides what is going to happen. Tonight we went to dinner with our really good friends - Wayne & Pam, Gerry & Barbara, & Deanne, who drove here from St. George, Utah. I don't know how you get through these experiences without the support of great friends. We went to dinner at a nice little Italian restaurant that we have liked for many years. Wayne kept calling it my "Last Supper" since I cannot have anything else to eat or drink until after the surgery tomorrow. We finished it off with not one, but TWO chocolate desserts. Then we came back to the house and Gerry, Wayne, and Steve gave me a really nice blessing. As anxious as I am, I do have a peaceful calm feeling. I know that the next few weeks are going to be rough, but I also know that I will be fine. I have had so many telephone calls and cards from so many people it is really over whelming. So, I think I will sign off. The next few posts will probably be by Shannon. She will keep everybody informed of what is happening. Thank you to everyone.

Thursday, April 8, 2010

Well, I guess it is time to write the next chapter. The past two weeks have been rather frustrating. The all knowing doctors don't seem to understand that when one has this diagnosis hanging over one's head it would be nice to make things happen faster. But, oh well. On Monday I had another appointment with the regular surgeon. I wasn't quite sure what the appointment was for since it was only scheduled for 20 minutes. When I got there and after the usual "please take everything off from the waist up" they came in and said that they wanted me to sign all of the permission papers and to get all of the pre-op things done. That meant blood work, EKG, and chest X-ray. I was a little nervous about the chest X-ray since last week on top of everything else I had a bad case of bronchitis. I have never had bronchitis in my life, and it seemed odd since I had not had a cold. I just had this nagging cough for several weeks and my voice was very low and sexy. But they put me on high powered antibiotics and I licked it quite fast, except for the hanging on of coughing up disgusting stuff. But I guess I am cured. When I inquired about a surgery date they said it would probably be sometime next week, maybe April 14 or 15, but they would call me. Today is Thursday and they finally called. It has been really hard to plan my life. Especially since people were calling wanting business appointments next week and I couldn't commit to anything. But as of today the surgery will be next Thursday, April 15. Tax day. I seem to have this thing about the 15th. Last year on March 15 I was having an emergency appendectomy. This year on March 15th I was having both breasts biopsied. Now on April 15 I will be having a bilateral mastectomy. Next year there will be no March or April 15. I intend to just skip right over it. It is actually a great relief to have this scheduled. Now I can quit worrying and just get on with life for the next few days.
The other big traumatic thing was to go wig shopping yesterday with two of my best friends. Pam has already been through the cancer thing with surgery, chemotherapy and losing ones hair. Linda has been with me through thick and thin of pregnancies and losing babies. Her usual comment is "we can do this" and "it's a piece of cake". That's what she told me about having a C-section when Laura was born. After coming to in the recovery room and feeling like a mack truck had driven through my body, I don't believe a word that she says to me about something being "a piece of cake". Anyway, Pam and I drove down to Laguna Niguel yesterday to shop for a wig before my hair falls out. I have already cut it short. I must say it is a surreal experience. I put on one wig that we were looking at for style only. It was blond. As I sat there looking at myself in the mirror I was staring at my sister, Nancy. I have never thought we looked alike, but, Oh my. Nancy was staring back at me. I guess we really are related! Anyway, it is very humbling to think about going bald. First they are going to take away my boobs. Next they are going to take away my hair. And I have been told I might have to get rid of my nails. What is a girl to do?!? But, I did buy a wig. Hopefully I won't have to wear it for a while.
To make matters worse, Steve and I, along with Michael, have been planning a trip to Europe for many months. We were to leave on April 23 and return on May 8. Needless to say, I am not going to Europe. I have insisted that Steve and Michael go. And as it turns out Shannon will be taking my place. My only demand is that I get a trip to Paris, France when all of this is over. I will have earned it. Since they will be leaving a week after I have this surgery, my mother is coming down to sunny California to take care of me for a week, and then Laura will come down. It would be nice to be able to do something while they are here, but that probably is not going to happen. I have been told that I will not be able to do anything with my arms for about two weeks, so they will have to wait on me hand and foot. Maybe I should try to enjoy it. One doesn't often get that kind of service. But I will be grateful for all the help I can get.
I am so overwhelmed by all of the telephone calls, cards, e-mails and general conversations of concern. I have had people all over Utah and California putting my name in the temple. I am so grateful for all of the prayers and kind words of encouragement. I know that I will be fine. I just have to get through this little rough patch. So, stay tuned for the next installment.

Wednesday, March 31, 2010

OK. I guess part of this blog thing is that I have to keep posting new information. So, here goes. I met with the plastic surgeon today. Talk about a lesson in breast re-construction 101. Construction makes it sound like we are building a house. Anyway, I went in thinking it was a fore gone conclusion of what was going to happen. Boy was I surprised. I have learned all about breast implants and about implants using your own body tissues. Actually, that appealed to me more because it would be more natural. It is a much longer surgery and longer recovery time, but it would last me for the rest of my life. You also get a tummy tuck out of the whole thing. That would be fabulous! With silicone implants they have to be replaced after about 10 years. I can't imagine having another boob job at 67 years. But, to my surprise he told me that I was not a good candidate for the own tissue job because I don't have enough fat in my abdomen and they would have to add implants anyway. Dang!! I lost all that weight for Laura's wedding and look where that got me now. So, for any one who wants to know, Janet is getting breast implants. It is about a 5 hour surgery. I will be in the hospital 2-3 days and a couple of weeks of recovery. The actual whole process will take almost a year to complete. They begin by putting in deflated empty balloons. Over several months they fill the balloons with saline. After several months they take out the temporary implants and replace them with permanent silicone ones. There are a couple of outpatient surgeries to finish the job and then I will have perky new 16 year old boobs. If this is more information than most people want to know, sorry about that. I have tried to condense it and not be too graphic. Now the next big question is when will all this happen. I still don't know. The plastic surgeon is out of town all next week, so it won't be then. I have another appointment with the regular cancer surgeon next Monday. I hope that at that time she can give me a date. I just have to get in line and wait my turn. Waiting is horrible. I need to get back to my life. I remember when I was pregnant and having babies, you get to feeling like there is no modesty left. Well, we are back to that same feeling. My body is just a piece of meat. I guess the only way to get through this is to keep a sense of humor and laugh about it. So, that is what I am trying to do.

Monday, March 29, 2010

A little comic relief...

Hope nobody is offended by this...if so, blame my brother...he won't care.

We had dinner together at my parents' house 2 Sundays ago, thinking that my mom would be having major surgery in the coming week...this would be a sort of "last supper," at least for a while. I planned dinner and brought the food, but at the last hour my brother texted me that he had the cake...this is what he brought...

"Thanks for the mammories"

We had a good laugh...and I mean a GOOD laugh...the poor 16 year-old, minimum wage-paid teenager at Baskin he'd never had this sort of request before :)

I won't tell you who was begging for the ice cream scoop...but she's 3 and it rhymes with "pa-tate"

Mom's meeting with the plastic surgeon Wed morning to discuss re-construction, so there will be an update shortly thereafter...

Thursday, March 25, 2010

March 25, 2010
Well, here I am about to embark on one of the most frightening and scary adventures of my life. It all started on March 5 when I went to see my internist for a routine physical of blood work and to convince her to get a scan of my entire back from top to bottom. I have had a lot of neck and back pain for many years and I finally decided that it would be a good idea to get it officially looked at. During the course of this routine physical she said "let's do a breast exam". I figured I was already there so why not. She had already handed me the usual forms for a mammogram and blo0d work. All of a sudden she stopped and said "you've got a lump. I'm changing this to a diagnostic mammogram and an ultra sound on one side." OK. So I dutifully made an appointment and went in. My appointment was for Wednesday, March 10. After the normal mammogram and the ultrasound they came back in and said I needed an ultrasound on the other side. OK. Then they came back in and told me I had a mass on each breast and it really looked like cancer and they were really sorry and did I have any questions. All I could even think to ask was "on both sides?" There have been very few times in my life when I have felt like I was kicked in the stomach but this was right up there at the top of the list. I think the last time I felt that way was when I was called to be Relief Society President.
Before I left I had to make an appointment for biopsies on both sides. That was done on Monday, March 15. On Tuesday afternoon, March 16 they called me to tell me that the biopsies were positive for cancer and I needed an MRI. On Thursday, March 18 I had the MRI. The next day they called me to tell me that they had found more cancer on the left side. I have no family history of breast cancer. There is really very little history of any cancer on either side, so this was just not something I every thought I would have to deal with. I figured I would die of some other old age disease, but not this. And definitely not at the ripe old age of 57!! Talk about your mortality hitting you between the eyeballs.
So, here I am on Thursday evening, March 25 trying to write about this experience. It is amazing how many people I have run into who have either had this, are in the middle of it, or had a good friend or family member with breast cancer. I have come to the conclusion that it is almost epidemic. I have received so many words of encouragement and comfort I am speechless. Everybody started sending me the names of doctors and hospitals for me to contact. One thing I have come to realize is that in this day of modern medicine, it is up to you to pave the way for your own treatment. One of my good designer friends who is in the middle of this told me that, and I didn't quite understand it, but I do now. I went over to St. John's hospital in Santa Monica last Wednesday, March 17 and met with Dr. Rengal. He is a cancer surgeon. He answered a lot of my questions and gave me some things to think about. I also made an appointment at City of Hope with Dr. Laura Kruper. Both of these doctors came highly recommended. I am so grateful that I live in southern California with several premier cancer centers, all within an hour's drive. I have decided to go to City of Hope. They are only 20 minutes down the freeway, and as one person told me, they are a one stop shop. I will be able to have the double mastectomy, the reconstruction, the chemo, and whatever else I get to have all right there. I met with Dr. Kruper last Monday, March 22. She was great, and explained a lot more things to me. I went back on Wednesday, March 24 for an ultrasound of my lymph nodes and possible more biopsies. Fortunately, I did not have to have the biopsy. They will not know for sure how much involvement is in the lymph nodes until after surgery, but at least they decided that they didn't have to do the biopsy. I am grateful for small favors. I have an appointment with the plastic surgeon next Wednesday, March 31. Then I see Dr. Kruper again on Monday, April 5. I really hope at that time they will schedule the surgery. I really need to get this done. One thing I am being reminded of is that I need to learn "patience".