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.