I started my radiation treatment this week. Things appear to be going "as expected" from the oncologist's perspective. I didn't expect to feel the side effect of fatigue quite so soon. I am receiving a pretty strong dose of radiation over a large area, from the front and the back. It doesn't take too long--I have to be very, very still in an awkward position for about 15 minutes. This is much better than the 30 or 40 minutes that I had to be still during the treatment planning stages.
They had to create a mold for my upper body, head and arms to fit into so that I am always in precisely the same position for each of my 28 to 33 treatments. My arms have to be over my head, and my hands have to grip onto handles that keep me steady and in place. This is not good news for my previously injured right shoulder which I was in physical therapy for up until the time of my diagnosis. Ouch...it has been hurting a lot since this all started.
Additionally, the skin of my right "breast" and upper chest that receive the radiation from the front and side feels like a bad sunburn for several hours after the treatment, and then on and off during the evening, night and morning before I go again at 11:30 a.m. each day to have it done all over again. I have extremely fair and sensitive skin so I am not surprised. They give me a lotion to apply to the radiated areas to try to keep the skin as hydrated as possible. It is soothing when I apply it, but its effects are not long lasting, so I find myself applying said lotion fairly often. They told me that I could not use it too much.
I have a pretty busy wedding cake schedule for this weekend, so we'll see how I function. There were no weddings this week, or the last week of May so at least I am not having week after week of busy. June however, presents the opposite situation. But, it is June and that is the month for brides. Thankfully, my dear sweet Kimberly has been my angel to help compensate for my inabilities. I don't know what I would have done without her.
May 16, 2010
I am sporting my new "un-wigged" hairstyle these days. Everyone, but me, really likes it. It's different for me but I am getting used to it. All I see are my chubby cheeks. My hair is extremely soft, very salt and pepper, with much more salt than I had previously. It has a natural wave, which I have had since my last baby was born, but is more obvious now without the weight of longer hair. This hair, almost 1" long, is 4 and a half months worth of growth. It's going to take forever for my hair to be even long enough to it the bottom of my ears. Oh well, it is what it is.
I felt pretty melancholy during the first few days of this week. I finally figured out that it was because the daily ritual of radiation just reminds me every day of my diagnosis. I was starting to feel more normal (not that I was ever really normal) and now I am being slowed down again. The "every-day-ness" of this treatment is probably going to be more taxing than the treatment's effects. I feel better when I am not alone. I need people. Most of all, I need my family, and sometimes it feels like certain family members forget that I am still going through this horrible thing. Not always...just sometimes.
I am so appreciative of your thoughts and prayers and loving support. I still need them. I try so hard to make sure that I don't let myself be defined by the cancer. It is not who I am, it is just something that I am going through. But, there are days where the burden is all consuming, and I don't like where my thoughts go on those days. I had one of those days on Thursday and I cried in the car while I was driving home from radiation. The afternoon was so difficult. I was so incredibly tired and I had baking to do and I didn't feel like doing it. I felt sad, and angry, and sorry for myself. Then Doug came home from work and offered to help me bake. He has not done that in a very long time. I could feel my countenance change as well as my heart. Isn't it amazing how the charitable act of one person can make such a difference?
I can't help but think of the lyrics to the hymn Count Your Blessings:
Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly
And you will be singing as the days go by.
So, amid the conflict--whether great or small,
Do not be discouraged, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey's end.
I know that I am blessed. I know it. I know that there are earthly angels that bless my life every day. My family, my friends, nurses, doctors, technicians or even Shelly at the pharmacy counter at WalMart. I know that even on days when it is really hard to have a positive attitude, I will eventually have my heart soften and feel deep gratitude for all of my blessings.
May 5, 2010It's been two and a half weeks since my last surgery, and for the most part, I am doing well. My biggest complaint is how heavy the implants are, and that I am constantly aware of them on my body. The feeling does not go away, and they almost constantly sore. It is difficult to believe that I will
ever get "used to them".
Let's put this into perspective. Most of you have probably seen on TV what a breast implant looks like. It is a clear balloon-like ball that is filled with saline (or silicone, but those are the ones of great controversy and not what was used for me). A 20 ounce bottle of water is 591 ml. My implants each have 750 ml of saline in them. Now, ya'll know how heavy a full bottle of water is! Just imagine a bigger bottle strapped to both sides of your chest. Now you see what I mean. One of the other reasons they are so uncomfortable is that the space left in my chest is much smaller than what they put in me. So, my skin, muscles and what is left of tissue has to s-t-r-e-t-c-h to accommodate the new residents in my chest area.
I have met with the Radiation Oncologist (Dr. Sailer) and they have begun creating the radiation treatment plan for me. I had the first part last Friday, and tomorrow I go in for the final adjustments and a simulation of the treatments. I begin radiation on Monday. I will have at least 28, but no more than 33 treatments. We won't know until we get into the thick of it. I will go for treatments every day (weekdays) for 6 to 7 weeks.
I find out on May 17th if I really truly do not have to have those last chemotherapy treatments that I didn't have back in January and February because of the horrible side effects that I was having. I am optimistic, but prepared to hear those words that I really don't want to hear.
I have enjoyed the last week and a half as I have been able to be more mobile and drive myself on errands. I even when to Kohl's yesterday and got some new clothes to fit this new body shape that I have right now. It was great.
I have felt so happy to not be so home bound. It's been great to feel more active. I know that there is a possibility that radiation will induce extreme fatigue, so I am taking advantage of every moment while I have energy to move and get things done.
It's been so great to see many of you as I have seen you at different events. Those of you who have seen me know that I am not wearing a wig right now, rather sporting my very, very, short 3/4" long hair style. I become less and less self conscious as I embrace my new look. It will be a year before my hair grows to have any length that I can really work with in a style. It took four months just to get it to 3/4".
Update 5/12/2010
There were some small complications in getting my treatment plan for radiation complete. Nothing serious, they are just trying to get it just right. I had my first treatment yesterday (Tuesday) and my second one today. This is life for me for the next 6 weeks. Everyday at 11:30 I arrive at Wake Radiology Oncologists for my treatment. It takes about 20 minutes from start to finish. The hardest part is staying still for that length of time. It's not the actual staying still that is hard as much as having to take my arms and fix them above my head. This is not a good thing for my temperamental right shoulder. It had been doing so much better (what with not working like a mad woman on crazy amounts of cake each week) but when it gets into a fixed position for any length of time, those joints just seize up.
My skin is already feeling like I have a sunburn. Not cool. It hurts more as my clothes rub up against it. They give me a special lotion that is supposed to help. I hope it does.
I noticed that I have been more emotionally sensitive since the Radiation phase has begun. I have bouts of melancholy. I have tried to examine my mind for the why. All I can come up with is that after weeks of just recovery from surgeries, I am once again in the thick of the cancer treatment, That means more discomfort, and new side effects. It just is a daily reminder of my diagnosis. I was started to feel more "alive" again. I don't want to see that go, even if it is for only a few weeks.
I know that I just have to get up and get going each day and do whatever is physically possible each day so that I don't dwell on the part of every day that is uncomfortable. I cannot let this intrusion of the world break my spirit. So I won't.
I am amazed how already the time of chemotherapy seems like a distant memory. A pretty horrible memory, but it is over. The surgeries (the big ones) are over. And I am still me, my body is just a bit "damaged" here and there. Radiation will be done at the end of June, and then THAT will become a memory. And then HOPEFULLY, that will be the end of that.
Hope springs eternal. :)
About 24 hours after my surgery (which puts me at about 4 o'clock Saturday afternoon) I noticed that I had some itching on my wrists and on my ankles. No rash, perhaps a little pink. Within an hour or so, I had just a general tingly itchy feeling all over my body and the wrists were definitely showing signs of a rash starting. My neck was the next to follow and by the evening I had a rash starting on my back and abdomen. I immediately started Benadryl. That helped me sleep through Saturday night, only to rise the usual times to use the bathroom.
Sunday morning the rash was much more defined and it was making me crazy. I stayed on the Benadryl, but also called Dr. Hanna to report that once again I was showing signs of an allergic reaction to something. I didn't have ANY of the suspected medications from the first surgery, so now we have to figure out what the real culprit is.
Now it is Sunday night and the rash is spreading like wildfire. I decided to experiment with an old tried and true thing called Witch Hazel. This homeopathic liquid is quite versatile. FYI:
Witch hazel is a low growing shrub native to North America. It has a long history of use medicinally, and cultivation of the bush has spread to Europe for this purpose. Preparations of witch hazel ranging from tinctures to soothing creams are available in most drug stores, as well as specialty stores for skin care. The plant acts as an astringent, firming and tightening tissue and acting to reduce itching and irritation. Other properties have also been ascribed to witch hazel, making it an excellent all-purpose addition to the medicine cabinet.
The Witch Hazel has an instant cooling effect, and it appeared to quell the itching long enough for the Benadryl to kick in. Catherine is on hand to keep my hands from scratching. It's bedtime, so I take two Benadryl instead of one along with my sleep meds and I make it through the night without going crazy with itching when I arise the two times to use the bathroom. Not bad.
I have an appointment which was previous scheduled with Dr. Hanna, just to check on my incision and the implants. All looks really good. But the rash is a real head shaker. He's convinced that it isn't from ANY of the oral meds given to me post surgery but one of the three meds they mix for anesthesia or something relating to the surgery. He sends me to Dr. Charamanti and I get mega-doses of Prednisone (steroids) and am told to stay on the Benadryl.
So, this is what I am doing. The rash is no worse today, but no better. I still see that as progress. Once, the steroids really start working (Dr. says 36 hours from the first dose) we'll should see some good progress. If not....suspenseful organ music...back to the hospital I go for the "big guns" of IV steroids.
Honestly, I really don't think it will come to that. I am so determined. I am being SO good about keeping myself from scratching. I am also convinced that the Witch Hazel is doing some good. Well, at least it is soothing and it isn't making the rash any worse.
I am still in pain, and it is hard to get up from a lying down position on my own without intense pain, so I always need someone to help me get up and lay down. I am able to find certain ways to lay in bed, with pillows propped in certain ways where I feel no pain at all. That is great. It's just moving around that causes the pain, so I move as little as possible.
The areas that will become my new breasts (I just can call them breasts yet...it's just stuffed skin right now) are very tight, as the implants are really packed in there. I am assured that over several months, the skin, muscle and tissue will "give" and adjust so that they are shaped more natural and don't feel so hard and painful. I guess it's like breaking in a new pair of leather loafers.
I am really shocked over this whole allergic reaction thing, and how much the implant area hurts. It really is much more uncomfortable than I could have imagined. I am always so impatient. I want everything to get back to normal RIGHT NOW!!!
Rest is what I need most, so that is what I am going to try to do. Radiation is just around the corner and that is going to be tough. Probably the hardest thing is the grinding schedule: every day, Monday through Friday for almost 7 weeks. It will be at least two hours out of my day, for many weeks. Again, my impatience is showing.
But, after reading this post, I hope you remember more of my optimism than my impatience:
Hymn #30: Come, Come Ye Saints verse 2
Why should we mourn, or think our lot is hard? 'Tis not so; all is right
Why should we think to earn a great reward if we now shun the fight?
Gird up your loins; fresh courage take. Our God will never us forsake!
And soon we'll have this tale to tell--
"All is well! all is well!!"
Mom had her second surgery yesterday. It was in-patient procedure so no staying over the in hospital again. We're still trying to figure out if that's a good thing or a bad thing. She went to the hospital at noon yesterday and her surgery was scheduled to start at 2. It was a little before 3 when Dad emailed me that the plastic surgeon was not finished with his previous surgery yet and they were still waiting. He also mentioned that Mom was on 10 mg of Valium and "lovin' it." When I talked to Mom yesterday around ten she said that her biggest hope was that she didn't remember anything. She just wanted to go in and wake up with the new girls. So I'm pretty sure the Valium helped this.
The next thing I know, Dad texted around 6 and said that Mom was in recovery and that they were anticipating a couple of hours for recovery. They came home a little before 10 last night. Mom was obviously in pain but moved a little better than I remember the first surgery go-round. She said that her mouth was very dry from the surgery and even the ice chips didn't seem to quench her thirst. She was also very cold from all the anesthesia wearing off. The shivering made her tense up and hurt. She said that she didn't expect it to hurt this bad this time. Frowny face. She also said that her chest wall and around the area were very tight. She tried to get comfortable but it seemed hard. After taking some medicine and trying to relax she seem to settle in. I was in there talking to Mom and Dad and then Daniel came in. It was so nice just sitting in there and talking with them. I think family being around when you're in pain just calms you down.
When I woke up this morning I came down stairs to find Dad. I asked how Mom did and his simple reply was, "Pretty good." HURRAY! About 25 minutes later Mom came down stairs. I asked her how she think she did last night. She said, "the drugs helped." Double victory. She's finishing up breky right now and I imagine will take it easy for a good while.
Musings* This afternoon I had to drive back to the venue where Saturday's wedding cake was delivered so that I could retrieve the cake stand and other cake accessories. This is not something I have ever done before, but the bride paid me for the convenience of not having to bring those items back to me later this week.
I don't drive very often. It is much more uncomfortable (painful) for me to have the seat belt across my chest in while in the driver's seat than the passenger's seat. I think I have driven only four times in the last four months. Today was spectacularly beautiful and the venue was at a rustic setting called the
Aqueduct Conference Center nestled in the bucolic woods surrounding Jordan Lake, just off Farrington Rd.
I had the windows down and the sunroof open. I was listening to a CD that Mary had made for Doug for Christmas and I had the song Like a Rolling Stone by Bob Dylan playing fairly loudly while I let the wind "blow through my hair" (well, figuratively, as my hair is only about 1/2 inch long right now).
I felt so alive and happy. There are several portions of this road that cross over some of the "fingers" of Jordan Lake. People were out on their boats, others were fishing and I just thought to myself "what is it about being close to the water that makes me feel so peaceful and happy?"
I get this same feeling when we go to the ocean. Water--lakes, rivers...it is all the same for me. I just love it. I started to think about how we need water to live. We can go without food for sometime, but it doesn't take too many days without water before our bodies begin to shut down.
That made me think about the Savior, and how all references in the scriptures to "living waters" refer to Him. He is the source of our spiritual life and if we go too long without being fed by Him through His Spirit, our spirit begins to shut down too.
I can't even imagine how I could have survived these last 6 months without my testimony of Jesus Christ and the power of his atonement to lift me when I have hit the lowest points that I have ever experienced in my life.
*(deep thoughts, contemplations, meditation)
What's Been Goin' On?
About three week's ago I started having the tissue expanders filled with saline in preparation for the final reconstruction surgery that would eventually take place at the end of the year. It became instantly apparent to Dr. Hanna, and me that the expanders were high on my chest and not in the usual level that breasts are found in women. Nevertheless, I returned 10 days later for my second fill. That was a week ago today. As he injected into the expanders the additional solution, I was very uncomfortable. No, that is an understatement. I was in pain.
Dr. Hanna was obviously concerned and told me that he didn't see any reason for me to return for additional fills, since the expanders weren't expanding me in the place where the permanent breast implants would ultimately go. He started thinking "out loud" in his usual manner.
He thought it would be best if he could go ahead and remove the expanders and put in the permanent implants now, before radiation treatment began. But, we all know that I was already at 9 weeks post surgery and that the radiation oncologist needed for the treatments to begin no later than 12 weeks post surgery. Dr. Hanna called Dr. Sailer to suggest the change in plans.
I was so hopeful. These expanders hurt so much and actually restrict movement of my upper arm since they go into my arm pit as well. (You'll just have to use your imagination, since I can't show you what I am talking about. Find the point of your right clavicle bone that is centered between your shoulder and the center of your neck. Go one inch down. That is where the top of the expander is. Imagine that your breast tissue starts there)
The thought of having to live with these tortuous things for 8 more months was very discouraging. You see, I originally could not have the final surgery until 6 months post radiation, or there would be serious healing issues. I was excited about the possibility of moving this time line up.
Then, on Wednesday, I got the call that Dr. Sailer said no. We couldn't hold off the radiation any longer. I was depressed. Despondent. I cried on and off all the rest of the day. Sleeping was difficult even with Ambien, because of the pain of these things.
I had an appointment with Dr. Sailer last Friday to start the radiation process for the next 6 weeks. When he examined me he said "Well, a picture is worth a thousand words". He was able to understand what Dr. Hanna was describing over the phone. He just couldn't imagine it, just as I am sure you might be having a hard time imagining what I am describing.
He looked at my chart and said that since I had such favorable pathology report from my mastectomy that we could buy a little more time and he concurred with Dr. Hanna to go ahead and do surgery ASAP.
Oh...I am not sure I ever wrote that they found NO evidence of cancer in my breast tissue or lymph nodes in the pathology. That meant that the chemotherapy destroyed ALL the cancer. All my doctors were beyond surprised. It was miraculous.
Anyway, Dr. Hanna and Dr. Sailer spoke this morning and my surgery to get these hideous things OUT and the permanent implants in is scheduled for this Friday, April 16th at 2:15 p.m. I am both excited and and nervous. I am not sure what to expect in the outcome. Because the expanders were unable to do what they were supposed to do, I may not get the fullness that matches what I was like before the mastectomy. At this point, I am trying just to be grateful that I even have this option.
Radiation will likely begin by mid-May. I won't know until my May 15th appointment with Dr. Singh if he still believes that I won't have to finish up the chemotherapy that was stopped back in January. I am not counting on anything, but hoping that his research will give me the answer that I want to hear.
Daddy
Many of you already know that my father died two weeks ago on March 30th. He passed away peacefully in his sleep after suffering for the last 6 or so years with Alzheimer's disease.
My mom called me on the evening of Monday, March 29th to tell me that the Hospice caretaker felt dad's passing was impending within a day or two. She said that Daddy had not eaten or drank anything in three days. He had not responded in several days. In that moment I felt an urgent need to be near him. I had not seen my father since early November after my first chemo treatment. I was not able to go to the facility in my immune compromised state.
We gathered up the family and immediately drove to see him. He was so thin, barely over 100 pounds. He was in a non-responsive state, but appeared to be sleeping, although his eyes were half-way open. On Tuesday, I returned with my son, Mark, since he was unable to be with us the night before. We stayed for several hours until my mom was able to get there. She was making the arrangements at the funeral home and cemetery in preparation for the inevitable.
I had to take Mark home so he could get to work. I was only home for 20 minutes when my mother called to tell me that dad had passed on. One moment he was breathing, the next moment he was not.
Within an hour or so, I returned back to the facility to stay with my mom until the funeral home came to take away the vessel that housed my father's spirit for these 82 years.
The next days were filled with many tasks and phone calls making arrangements for my sisters' arrival from their homes across the country and preparing the program for the funeral including helping my kids prepare special music for the funeral.
My mom asked Douglas to give my father's eulogy. It was wonderful. My brother-in-law Will gave a marvelous talk on the Great Plan of Salvation.
I was so happy for my dad, who was now free from the body that had impaired him from being able to communicate with his family and friends. And yet, my daddy had died. It was exquisite joy and sorrow.
Three days. Three days my father had no water. He could not live without it. Water is essential for our bodies. The Living Waters, where we can drink and never thirst again are always here for us if just want to drink.
I am so thirsty.
Several of you have expressed concern because I haven't written in a month. I am very appreciative to you who have been so thoughtful. I have started entries several times, and I just stop and think to myself "this isn't what I want to say". So I erase it and stop.
It has been a roller coaster of a ride for the last four weeks. I have had weeks where everyday I have crying spells with feelings of despair...so overwhelmed. It has been difficult to adjust emotionally from the mastectomy and the loss of my breasts. I don't really have the words to explain how that feels.
Then, there is the chronic pain. I have pain from three sources. The first is the incision itself. Even today, six weeks post surgery, I feel as if someone has taken a long piece of rough twine and wrapped it tightly around my chest, where your bra band would be. Well, except it doesn't hurt on my back. I have three places where the incision has not closed and healed. Two of the places are near my sides where the drain tubes were inserted for the week or so post surgery. They are tender and sting when my clothes or anything touches or bumps it. I also have about an inch of the 22" incision that is still an open wound. But, finally this last week, I have seen improvement and it doesn't hurt anymore...it's just really ugly.
The second source of pain is deep inside from nerve damage. One of the consequences of having this surgery with lymph node removal is that nerves are cut and damaged. Although I have no feeling on the surface of my skin at the point of where my breasts used to be, I have sharp jabs of pain deep inside me at those same places.
The third source of pain is referred pain from the above mentioned nerve damage. I have a numb strip that goes down my right upper arm from my shoulder to my elbow, but under that skin is a dull stabbing pain. Unbelievably, I have the same kind of pain on the outer part of my left upper thigh that goes down to my knee and ends in a sharp intermittent stabbing pain.
Thank heaven for good pain medication!!
Sleeping has been tough, because I have to sleep on my back. Those pains I described above made sleeping on my side totally impossible.
Now that the update on all the physical symptoms is complete I can write that I am doing much better emotionally now than a month ago. The steroids have probably all gone out of my system and now I only have mood swings associated with the chemotherapy induced menopause. Not great, but not as bad as the "crazy" I had with the steroids.
Over the next month or so, I will go weekly to the plastic surgeon to gradually have the expanders filled with saline. I cannot start radiation until I am completely expanded. I will start 6-7 weeks of radiation once the expansion is complete, which will be 6 weeks or less from now. Once radiation is complete, I have to go at least 6 months with the filled expanders in place before I have a second outpatient surgery where Dr. Hanna will remove the temporary expanders and replace them with regular saline breast implants. If I have one complaint, it is that all of the details including the knowledge of the second surgery was not explained to me from the beginning.
I have to mention that I have had many hours to contemplate the purpose of adversity in our lives. I really am grateful for the things that I am learning about myself and about how Heavenly Father works in our lives, if we let him. This really has been the most difficult time in my life. But, it also has been the best time of my life for knowing and feeling the love of God and His son, Jesus Christ. Just when I start to feel the worst despair and feelings of being alone, he sends his love through his Spirit or through my family and friends. My faith has been tested, but I continue to stand as a witness of his power and his mercy.
It is still difficult to type, since my fingers are still plagued with the numbness of neuropathy, so this will be brief.
The last two weeks of my life have been surreal. I don't even know how to express the life-changing experiences that I have had. I don't think it would have been as difficult, if it hadn't been for the sudden and urgent action that needed to be taken when I had the severe allergic reaction to the Percocet (Oxycodon). Those who saw me during this time were witnesses of true insanity. The heavy IV steriods really did alter my perceptions. The itching was so intense that I now I know why people who feel tortured want to run and jump off buildings. Mere words cannot describe.
I spent from Wednesday through Sunday at the hospital for treatment for the ridiculous rash all over my body. Every day, the itching subsides more and more. Today, there was very little itching.
I cry everyday. I am pretty sore, but healing well. I can't sleep at night because the steroids make you hyper. Doug reminds me everyday that once the steroids get out of me that I will feel more "normal" again. Now, remind me.....what is NORMAL for me? It was so long ago, I just cannot remember.
Seriously though, I couldn't have made it through these last weeks without all of your love and prayers. When I am feeling better, and my fingers aren't so awkward, I will write more.
Posts
