Some of you may be happy to hear that I engaged a driver yesterday. I woke A from a sound slumber around 8:30 (on a Saturday morning, mind you) to take E and I on some errands. She was very willing, I’m grateful to say, but asked today that we consider waiting to go upstairs until she is awake! She scored a new winter coat in the deal. She also had a thrill of a life time when Uncle M came to visit from NY yesterday and let her drive his fancy shmancy BMW black convertible sports car. All is well in the life of the 15 year old today.
I continue to get visits from our angel nurses, every day. In fact a friend was over last night who is a student in a nursing program and I gave her a run for her money as we examined the incision and I showed her how the drain works. I’m finding these nurses among the most willing to talk about body fluids with me! Those of you who know me well, might know that I love talking about that stuff, so you can imagine what a thrill this is. You are off the hook for now!
I am sponge bathing because of the drain. Not as relaxing nor steamy as a hot shower, but I am finding it a time to spend time with my body, which may seem like a statement of the obvious. It’s so easy to ignore things in the shower, ya know? So as I take care of my daily needs I feel like I’m growing into this body on many levels. So far so good. I almost get too excited, but what is a G.O. to do?? It’s getting to the point that I get so excited to show the nurse-o-the-day the incision, that I’m afraid I’ll be asking anyone who comes through the door to check it out. Imagine me, an exhibitionist. So if you come for a visit I’ll do my best to restrain myself.
I went for a walk on the golf course today, avoiding the biggest hills for now, and feel really good. My plan is to nap and then do some quiet stuff at home for the rest of the day. Your energy is felt, your calls, cards, food and visits are appreciated more than you can possibly know.
It was nice to be home with B today. We took a nap, had lunch with a friend, and chilled for most of the day. I did some work from home. I made the mistake of going to pick up the kids from school and doing a couple small errands. While I loved doing something normal and giving B time to himself, I had no business being on the road. My range of motion is not good enough for driving, nor is my ability to drive a standard transmission with one arm in partial functioning mode. With A driving on a permit, she is observing everything about our driving, and I was not setting a good example for her. It WAS good to get out, but even better to get home. I’ll let others drive for a while, no problem. I also felt very vulnerable without a big pillow draped over me. Just the idea of stopping short or something made me twinge. Alas.
The stampede continues. The food is coming in as though we were having a drive for hunger. Those of you from afar can rest assured, that we are WELL taken care of here. Wanna come to Maine for dinner sometime SOON?? The love has flooded our lives and we are buoyant in the sea of support. Another angel friend nurse visit today, and the incision looks beautiful. It is draining less than yesterday which is good. The surgeon called tonight with no pathology report. She told me that they are being extra attentive to the chemo affects on the cells and reported that the huge effect seen on the MRI is being confirmed. They want to be very thorough and we are ok with this. We will learn about it either Monday or Tuesday. Angel nurse recommended that we find out if they sent this out for analysis or not. If not, we should request a second opinion. I assumed from what the surgeon said that they were sending it out to an independent lab, but I did not ask specifically. Together we can do what we cannot do alone. Thanks S for that advice.
There are times when I STILL think that this is surreal. Is this really happening? I never imagined being the one going through this. How could I or anyone else? These thoughts are not sad at this point, but observations at a point in time. I feel so connected today, and so when I remember to empty the drain, or when I look down at my new body, I am reminded that life goes on, and I can feel ok in spite of what we’ve been through. My energy is ok. I tire at the end of the day, imagine that. I am laughing, and cracking jokes in very poor taste with some. I am feeling like the glass is neither half full nor half empty. It’s actually very full. Please understand that I don’t like this. I still don’t like not having hair and having a cold neck. I don’t like the fact that my left breast is now smooshed on a bunch of slides in a lab. I don’t like the idea of waiting with baited breath after every scan from now on. I do like the idea of putting most of this behind us. What I will keep in the fore is the community that has come to life before my very eyes. The expressions of love and affection. The random acts of kindness. The living in the moment. What more do any of us have?
As I was going under on Tuesday in the operating room, I felt the stampede. It was still going yesterday (Wed) as we returned home, and long into the night…in fact I think it’s still happening. Thanks so much, all of you, for carrying me/us. Whether it was in the form of a thought, prayer, energy, light, a candle, a comment, an email, a card, a visit, some nourishment, reassurance, concern, or just pure G.O. energy, thank you.
Tuesday started out with a bit of a bump as they tried to access the port for the IV. I don’t want to go into too much detail, but after 3 attempts at the port and 2 attempts in my arm and my hand, we went up to nuclear medicine without an IV. I felt a twinge of sympathy for the nurse who was the primary. I’m sure she felt bad about it all. Anyway, they did not need the IV in nuclear medicine, so it was ok. I know both B and I were holding back on thinking that this was not a good way to start the day. G.O.’s don’t think that way.
ANYWAY, the first proceedure to take place was to shoot small amounts of a substance around the biopsy site. As I was getting these shots B was on the cell calling the Cancer Center where I received chemo to ask them what size needles they used to access my port. The first 3 injections stung a bit, the last one a lot more, but we got through it. I was glad B was otherwise occupied on the phone, I’m sure it would not have been a joy to witness. Basically the substance would show the path of drainage for this tumor and would lead the surgeon to the sentinel node. This node is the gateway into the lymphatic system under my arm. I had to massage the area and then they had me lie on my side and back in 3 different positions. They took two 5 minute pictures and one 2 minute picture. In the middle of the 2nd picture, I heard the tech say something like “there’s that node”. This was wonderful to hear as they warned us that it could take 45 minutes or longer, or they might not even find it, which they said wouldn’t be a bad sign. The camera they use is a flat screen that comes down over me on a table similar to a CT set up. I sort of imagined that I was the batter and it was the waffle iron. Fortunately I didn’t get squished or eaten.
Then we went to preop again, and a different nurse came and accessed a vein on her first try. I was told I had to lose my favorite flannel life-is-good snowman pants, which was very disappointing. Then I was swooped away to the OR. B was sent to sit vigil for eternity in the waiting room that had no plugs for the laptop with a tired battery. I have no idea how he managed during that time.
I barely remember hearing people and asking to see B once I was in recovery. I clearly remember it taking a looooooooooooooooooooong time for me to focus and get the cotton out of my mouth. Having B there was just what I needed. I had an ace bandage with a lot of padding wrapped around my chest. It felt very secure and comforting to me. The drain was pinned to my johnny.
The room I was given in the hospital was on the river side and I had the bed by the window. It was perfect as far as hospital beds go. I asked to leave the curtains open so I could see the sunrise, and not only did I have that, but someone was in a kayak coming down the middle of the river as the dawn broke. I imagined it was me and I had a delightful ride. The night was not too bad. B left just as friend D arrived, and her company totally made up for the unidentifiable object on my dinner plate that was masquerading as a veggie burger. Fortunately the broth in the vegetable soup was tastey, and I had apple sauce to keep me quiet. I really was not that hungry. I slept shallowly but well I think, and the care was excellent during my stay. I was warned that I’d pee green from the nuclear substance and the blue dye that was used during surgery…it was actually a very deep blue green. Kinda neat as far as colored pee goes. I was happy to see it coming out of my body.
The surgeon showed up early in the morning. I was so happy to see her. The day before surgery she called me to go over questions and all, and as we hung up she said “I’ll take care of you, I promise.” That was a jewel that I carried with me into this phase, along with all of you. SO she immediately wanted to check out the incision. I sat up and before I knew it she had unwrapped me and was checking things out. I decided to just go with the energy, and my first glance at the site where a breast used to be was not as devastating as I thought it might be. I think I have been processing this since the first mention of mastectomy in July, and I’m sure I’ll be processing it for a long time. I am feeling some relief today.
The surgeon told me that she felt very good about what she saw/didn’t see. She took 2 nodes out for analysis, the sentinel node and the next one. She said they were small and squishy which is what she hoped to find. If there were obvious hard places in the nodes, it might mean that the tumor was growing in there. There may be ‘trace’ cells of the cancer that the chemo evicted, but that would be expected. SO those nodes are on their slimy way way to the lab for microscopic analysis. We should hear that news either Friday or Monday. (The mid week holiday may have slowed things down). If there is positive activity, then she will likely have to go in and take more out. If not, that would be the end of being cut open as far as I can tell. I feel very hopeful. This surgeon is wonderful. She sat with me for long enough, answered every question I had, offered more info and gave me a hug before she left. I will see her next when we go in to get the drain removed, probably early next week.
The hospital offers a free Reiki service, so I called for it and someone came up just before we left. It was so good to leave. I slept the whole ride home.
S is a friend, has a lot of experience as a breast care nurse, and is my daughter’s friend’s mom. Her experience has been so valuable to us. Basically everything she said about mastectomy has been my experience:
1. doctors and nurses love to look at incisions. You HAVE to tell them if you are not ready to look yourself. 2. you are going to feel better than you expect to. 3. the drain will do its job if you do your job (like don’t pull it out or render it useless by not ‘priming’ it after emptying it)
She came to see me/us yesterday just after I woke from my nap. It was reassuring to hear her complement the incision and to get her assessment of things. She even brought me a better chart than the hospital gave me to record the drainage. What a blessing. While she was visiting two friends stopped in and of course we hugged. S made no bones about me hugging all these people the day after surgery, and told me she would not hug me for at least 2 more days.
Another nurse friend came by later and said with the most sincere and loving look “I’m so glad it’s gone”, as she looked over the beautiful work of our surgeon. When I went to bed, I made sure extra pillows were over my incision incase the rhino-katz decided to pounce. I slept very soundly.
I am truly amazed that I feel so good today. The pain is more of a muscle ache than anything and is not constant. I have occasional twinges along the incision line, but not much. It is easy to just stoop over away from a stretch, but it feels much better to bring my shoulder back and extend my arm to the side just a bit. I am being careful. The doc wanted me to do an exercise where I walk my arm up the wall with my fingers as far as I can without straining. There will be more once the drain comes out and this will be important because as the incision heals it will want to pull everything tight and I don’t want that.
I have some appetite. I made myself lie down before my ride to acupuncture. Another nurse visit and peek at the incision which looked healthy. My spirits are good. B has been amazing through this. A and E are mostly focused on their lives, and I want it that way, most of the time. This has to be weird for them. Our angels are swarming and the endurance is amazing. I’ll keep giving updates as I can. So far so good.
Surgery went well and P is resting overnight in the hospital, as planned. I expect to bring her home in the morning. Thank you all for your thoughts. We will have more details in the near future.
I have thought a lot lately about children and how they deal with cancer of a loved one or their own cancer and treatments. A and E, our sweet children, have been troopers. Being 15 and 13, they are appropriately self focused. They are willing participants when we need to talk about decisions regarding my treatments or their care when we are not available. We are giving them as many choices as possible so they can feel somewhat in control. I’ve been feeling pretty good of late, and it all seems like normal life here at home for now. With regard to the medical side of things, they want information and will tell us when they have enough. They do not like to talk about it, of course. And as E so eloquently posted back during the 2nd round of chemo, dwelling on it does no one good.
I’m grateful to have some understanding of the developmental needs of a teenager. As such, I am not always happy about it, but I’m thrilled at the same time that our kids are wrapped up in their lives. They check in enough, are affectionate enough, and I/we even get double plus good time with them enough. They could do more dishes, I suppose. They are each coping in their own ways and they are keeping up with excellent grades, sports, activities and friends. I know they take the lead from B and I, and we are doing well through this together. We have gratitude that A and E have come to live with us for a time.
I don’t remember if I shared a story from Tucson about a young girl “T”. I’ve looked back, but cannot seem to find it. So I’m sharing some of the story from my journal. I was with my redwood sister S and we were indulging in all of the water activities at the fancy resort where I was staying. (We call ourselves the redwood sisters because over20 years ago a mutual friend/colleague said we had to meet mostly because we were both tall with red hair. It was love at first sight.) We had just left the “lazy river” and went into the hot tub, around 8 pm under the stars. This was right after I was given my diagnosis, before any treatments.
We were joined by a family of 4. A boy of probably 4 with a blue bathing suit with red lobsters all over it came in right next to me. I flirted with him about the lobsters. His older sister and mom came in next. Sister could not have been older than 10. I had seen her shaking her skinny booty with Sponge Bob at the event at the lazy river, and said as much. Dad joined as well. Serendipity is a wondrous thing. This family was from Arizona. They had been granted a weekend here by the make a wish foundation. T had some kind of cancer and had finished the treatments probably a few months ago. (her hair was very short, it looked like a really cute pixie cut). She was proudly wearing an employee name tag from the resort, with her name on it. Her brother had a cup of cold water and poured it in the hot tub and we pretended it felt cold. He started pouring hot tub water over our heads when his dad discouraged further activity. He was really cute. We told them about us. The boy thought it was cool that a boy from AZ with lobsters on his bathing suit was in a hot tub with someone from ME.
We also found out that the big wish was for a white horse. Apparently T was asked to make another wish and her persistence on the equine (ok, how about a pony? Ok, how about a foal?) paid off. She was about to get her horse for one year. So, how about this? My friend S is a cancer survivor who is really into horses. She told them as much and that the cancer has not returned for 12 years. Dad spoke briefly about the process of treatments and how brave his girl was through it all. Mom and S talked about horses and stuff they would need. It was delightful. The girl just mentioned slight reference to her treatments, but was so focused on the fact that the horse was coming in October.
T had her family supporting her all the way. She was so cavalier and made reference to ‘the time when (she) still had (her) port’ just as a reference as she was going on and on about her wish for a horse and other interesting things.
As I think about my reaction to chemo, I wonder how the heck children, (and elders or those whose bodies are compromised for other reasons), COPE with the negative side of the chemo drugs. How do children make sense in their child minds of what cancer means to them? Do they even try? It does not even have to be cancer. I learn so much from our kids, from their friends, our nieces and nephews and from the children I am fortunate enough to encounter in my life. They certainly have a lot to teach me. I think from birth children are “G.O’s” until something changes that.
A friend send the following link to me a couple weeks ago. Everyone I’ve showed it to had a reaction to it, and B suggested I include it, so here it is. Thanks so much M for sharing it with me.
Hey you guys. Well, the snow did amount to something after all. We woke on Friday morning to a beautiful white canopy at our house. I know some were cursing the heavens, but “G.O.’s” love the first snows. I do.
Last night I received a bunch of calls from the anesthesia department at the hospital just checking in with stuff to prepare for Tuesday. I had just visited with my herbalist the day before, and received some presurgery herbal support. The nurse said that she is supposed to tell me to stop all herbs and when I explained that I doubted my herbalist would knowingly give me anything that would get in the way with my blood clotting, she suggested I speak with the surgeon. Surgeon was in surgery and would not be able to talk with me until Monday. I asked to speak with a nurse in the surgery department, she appropriately informed me that she did not know enough about herbs to advise. SO, I emailed my herbalist and we worked out a compromise.
After the calls I observed my first twinge of fear. The port-a-cath surgery was the first surgery I’ve ever had, and the anesthesia is being kicked up a notch for the mastectomy. It’s bizarre thinking that I’ll be checking out for a couple hours while so much is going on. B plans to be there, of course, with a book, his lap top and all his thoughts. While the nodes are being detected with a geiger counter of sorts and then run to pathology, while the pathologist calls the surgeon who is working her magic and is up to her elbows in me, while the anesthesiologist makes sure I’m not feeling anything, while the assistants do their thing, B will be sitting in the waiting room hearing each second tick by. I know that some of you will also be marking time in your own worlds. I know B will be fine, but I think he has one of the hardest jobs. I have the easiest job once the anesthesia is administered. Never having gone through that before, I was amazed that it felt like I was being prepped one second and told that it was over the next. I am fully aware that so many of you will be holding me up during that time when I’m beamed up to the mother ship. Gratitude abounds.
Between now and that time when I go into lala land, I must remain awake to my thoughts. I have enough energy to do the things I want to do this weekend. On Monday I’ll be working a bit in the morning. My toughest job, I think, is just observing my thoughts and not getting stuck in them, especially if they are anxious in nature.
As far as surgery updates go, I have no idea when we will be able to post anything here. I hope you can assume that things went well. Our surgeon has over 20 years experience, and we have a lot of confidence in her skills. This is becoming a fairly routine surgery, unfortunately. We know that the PET picked up no activity. We don’t know the node involvement and will know more after Tuesday. If there is limited node involvement seen, then I may not have to have radiation. If a lot of nodes are involved, then radiation it is. Others have had to do this and got through it just like getting through chemo. If many nodes have to be removed, then I may have to deal with arm swelling, and there is a bunch of stuff to be done about that, and that would be rather permanent if I understand it correctly. I will have my life and at this point that is the ball my eye is on.
This morning I’m watching the first snowfall from our dining room window. It’s not amounting to much, which is good because I have some appointments this afternoon, but it still gets me in the mood. I love the change of seasons, whatever time of year it is. I feel really close to normal today. I just cleaned the house before the woman who comes to clean arrives. Ya know? Never having had a cleaning person in my house, it’s something to get used to. It’s the first Thursday that I’ll be home when she gets here, and not on my way to get a neulasta shot, or some other treatment…in 8 weeks. It’s funny to tell the kids to clean their rooms on cleaning lady weeks. If she cannot find the floor to vacuum, there’s a problem. This cleaning lady is and angel sent by an angel.
I went to work a couple of days this week, but truthfully I am getting more work done from home than from work because much of my time is spent entertaining loving hugs, questions, and visitors when I am at work. (Not that I mind this one bit…) I’m working about 20 hours this week, and feel good about this.
A friend left a message for me at 3 pm yesterday that went something like this: “I ‘m sorry I didn’t reach you, I wanted to wish you a Happy Day 15! Hopefully you’re napping and NOT working…” I was so happy to call her back first to thank her for the Day 15 wish, and to say that I was neither napping nor working. I was with A and some friends at the Eastern Maine Soccer finals. I actually felt like I was playing hookie from work for the first time! We left the game and I was reminded that the sports recognition night at the high school was at 6pm. We had no time to get home and back to school. Alas. I went to bed at 8:30, as soon as I could say hi to B and E, stare at the beautiful fire in the fireplace for a minute and pet the katz. Boy didn’t the felines have a lot to say. I think I left the house at 9:30 am…ooops.
Thank you all for continuing to read this and for sending all the love and hope that keeps us buoyant. Some of you have asked about the surgery, which tells me that I/we did not exactly include specifics. I’m getting a mastectomy without reconstruction. Both B and I thought that waiting to see if I want reconstruction after living without it for a while, was the best thing to do for many reasons. The first reason is just that, I don’t know if I’ll want reconstruction. Another is that I am thinking that removal of one breast is enough for now. I don’ t know if I want a foreign object to deal with too. I am told by some women who went this route that they are glad they did. They felt ready to make decisions about whether or not to do reconstruction, and what type of reconstruction, after they were 6-12 months out, a bit clearer headed, and less emotional about the whole ordeal. I have been told by several who had reconstruction at the same time as the mastectomy that they wish they waited. That was enough for me to feel good about the choice.
I think I may have said this before, “never have my breasts caused such a sensation”. I have been struck by the willingness of women to talk openly about their bodies. I mean all women, not just those who have dealt with cancer. I am also struck by the men who are interested to get in the conversation too. Not as many men have asked about the nitty gritty, my brothers maybe, but not many others. It’s got to be an interesting thing to contend with. I don’t want to get started on the breasts and society thing. But truthfully, I have found myself wondering how much do we share? Who cares what goes on underneath my shirt? Here I am, essentially in a public forum, sharing my thoughts, decisions and feelings about my own breasts. It’s not all about that in my opinion. This is about my health. People keep on reading. I love that. I appreciate the people who are asking “so what exactly are you having done in surgery?” If you want to know, just ask. Obviously we are interested in getting the word out, and helping someone who may come across this blog some day. I have to say, the idea of people thinking about my breasts makes me smile. It’s about time!
I asked the surgeon to draw a picture to show us what exactly gets done during a mastectomy. She did so in a way that gave us a good image of the process. I never thought about the fact that mastectomy crosses no other barriers, if you will. The tissue is scooped away from the skin, and the muscles that used to be removed during the days of the radical mastectomy are left in tact, unless the cancer cells have attached to the muscle. Even in that case, apparently, only partial removal is necessary. I don’t know if radicals are performed any more, but believe me, I’m so grateful that medical advances have taken place. Our surgeon said the physical recovery from this is fairly simple, and is easier than dealing with chemo for most. This was confirmed over and over by others who have had mastectomies. She was sensitive to the emotional material that is attached to this whole experience.
I have emotional material, but at this moment, not as much as one might think when the idea of losing a breast is posed. You know there are some things that define us as men or women to others. There are some of us who don’t care whether someone can tell if we are male/female. Losing my hair and now the prospect of losing a breast has me thinking about this. At this moment I do not feel that it is a loss of identity. My hair may be a bigger loss for me than my breast, truthfully. BUT I’ll keep you posted when the hair grows back and the breast doesn’t.
I was quite a diary queen when my kids were born. In fact I remember that I was nursing my kids at my parents house one day. E was brand new and had finished and A came by for a sip, and Pop looked over and said “that’s my girl”. I could not get over the fact that he looked like a proud peacock about something like this. I also had the honor of donating milk to a friend who adopted a new baby when I had more milk than we had freezer space for. She was trying to stimulate her own production. This was incredible for me. The best part of that was the day she showed up at our house for the next cooler full, and when B opened the door, she said “look!” and lifted her shirt and squeezed her nipple and milk was coming out. (B’s expression was priceless, by the way.)
I asked the women I will call my mentors what they were thinking/feeling before, during and after. As expected I got a myriad of responses. The consensus was that they were really ok about it. Many said that they were reassured by their partners that they were loved for who they were. Some said that the emotional processing went right along with the events at hand, some noticed that processing happened months/years after the surgery. The extent of grief in these women was variable. All said that dealing with the drain was a pain, but generally it was because after the first 2 or 3 days, they were ready to get up and go, and the drain flopping around was annoying. Well now with the spiffy new and improved drain pocket that can be velcroed anywhere around my ribcage, I feel like I’m going to be the happy patient, frolicking about with no cares in the world! Yea, ok, maybe not exactly, but you know what I mean.
There is a practical side that B and I spoke about regarding the fact that my clothes fit me right now, and it would be nice if I could wear the same clothes after this is done. There is a balance thing, but after looking at me, the “fitta” told me (with tact) that I shouldn’t have as much of a balance issue as, say, someone who is a 44 J cup. 🙂 I’ll keep you posted on that one.
Today I went for a Post Op Camisole fitting…it’s a sexy garment that I get to wear after surgery until the drain comes out. Talking with others who have been through surgery, the improvements over the years caused a bit of camisole envy I think. There’s even a pocket for the drain. The “fitta” was really swell. With 25 years of experience, I felt in good hands. It was a 20 minute ordeal, covered by insurance…and I learned that new undergarments, if I need / want them, will be reimbursable as well by insurance. Well worth the almost 3 hours of travel. I felt like a big girl. I actually went to this appointment on my own.
I have the fortune to have wonderful women who are nurses in my support group. Some of them have lined up for the first 5 or so days post op to pay me a home visit, check me out in my new lingerie, and make sure everything is doing what it is supposed to be doing. This gives B some professional lenses to look through, and I think he is relieved about this. That’s so important to me. They didn’t even blink (well I didn’t see them actually) at my request.
Speaking of B. This time of year, especially hunting season, is a time of rejuvination for him (my words). Something happens when he is out in the woods that nourishes him. He takes a lot of time off from work and goes out just before first light. He comes home tired, smelly and content…usually with some stories to tell.
I have been excited because it is his time to get away and not be thinking about breast cancer. SO hunting season started Saturday. He left the house at 6 AM or so. At 9:00 he called me to tell me he filled his tag. I asked why he did it so soon. He said he had “to focus on breast cancer”. I said “you better get your arse out in the woods this month or I’ll lock you out of the house”. What do I do with this guy??
Phase 2: As chemo ended and talk of surgery begins, I have found myself contacting other women who have been through this. The 5 I have spoken with thus far have been more than eager to share their stories, and listen to the choices we have made. I’ve been eager to hear about what they were thinking and feeling during the whole process, and how they feel now about their choices. When they have said that they think we are making the right choice, I cannot tell you what a relief it has been. When I talk with these women and they nod their heads, I KNOW they KNOW what I’m trying to say. This type of support when I’m feeling like I’m in a sea of my own is so grounding for me. Because of their journey, my journey has been made easier. They did the clinical trials upon which my providers are drawing to help us make the best decision. In speaking with one of my nurse friends, she said “if you didn’t make that choice, I would have been bouncing up and down inside and would have figured a way to tell you my concerns…”.
I am having a hard time finding the words to express what it’s like to have people care about me and us so fiercely.
Today I have felt as close to normal as I have in a long time. I’m still tired after about 3pm. I am still taking time to rest. I’m choosing to work from home instead of in the office most of this week, and not working more than 20 hours. My throat does not hurt any more. I have patches of dry itchy skin that are eased with skin cream. THIS I can manage….and we don’t meet with oncology again until the 24th. If every day I feel better, maybe I’ll have the stamina to hear about the next phase when it’s time. My eye is on the ball.
I’ve heard from several people that they were chomping at the bit waiting for the surgery news. Several loved ones told me/us that they were checking the site throughout the day on Monday to get the skinny. The analytics site told B that the viewing of the site peaked incredibly that day.
We were intentional in our writing of “the conundrum”. Intentional in the time we took to let it all sink in. Intentional in waiting to write until we had some of our thoughts and facts in order. We wrote separately and looked over each other’s entries until we felt it expressed what we wanted to communicate. Sometimes I sit at this computer and just write. I call that journaling. I may have referenced that before somewhere. I just close my eyes and let my fingers communicate to the document what is going through my brain. This I do when I feel overwhelmed, cannot think straight, cannot sleep, or when I just have to get something out of the circuitry. This information is too raw for me to have floating in cyberspace. It’s also information I may never want to read again.
I understand now after a long conversation with R, Brother #1, (and D in the background) the other day that they were very interested in what I/we put in the blog, but were unaware of the extent of the discomfort I was going through. Do you know the feeling of loving someone so much that you want to know about all the gritty details? You wouldn’t believe how many times I edit and edit some of the entries before publishing. When I am feeling on the low end I have no desire to do intentional writing or draw or anything that would suggest being in the moment. I’d rather chop wood and carry water to get the circulation going. But I’ve had a few people help me get to the nitty gritty, the depth of the sad or discomfort, and this has been necessary to help me move on at times. It’s a delicate balance at times, to honor what I’m feeling/thinking, and not get caught in suffering.
So what’s the point in what I’m writing today? If this information is going to inform and educate loved ones and others who may be going through this, it’s important to include some of the nitty gritty, I think. Somewhere I or we mentioned that this last treatment knocked me for a loop. I want to try to describe that just so you understand that I’m not just marching through this unbruised. I and we are getting through it the way we know how. I don’t think it is necessarily either honorable or brave. It just is.
I’m still in the 14 day window of the chemo cycle that I’ve been in for 8 weeks. I was told by others who went through the AC (Adriamycin and Cytoxan) chemo regime that there was some cumulative effects as treatment went on. Each woman had different things to say about how she was effected. Let’s see, I’m on day 12 today. I am still dealing with a ‘not quite up to par’ feeling. Every day seems better from the previous, but it is not as predictable a climb out of the hole, and sometimes out of the blue I feel crappy. I am trapped in this body that I think is anticipating another infusion in 2 days. I have times when I think I’m nauseous and if I eat something I feel better. Sometimes that does not help. I have times when I just need to close my eyes. Sometimes I nap and sometimes I just do the sensory deprivation thing.
I have been fortunate that I have not had significant mouth problems. Some women I’ve spoken to have gotten terrible sores and infections in their mouths and throats, yeast infections and other painful stuff. I was fortunate that my dentist office had a cancellation like 2 days before the first infusion. My 6 month cleaning was scheduled in the middle of the chemo schedule and I was told not to have cleaning during the treatment. It was not safe for me, nor would it be safe for my dentist or hygenist because that stuff stays in my system and is just not something that should be aggrivated (my interpretation). Fortunately I got the call to come in just in time, and check it out, my insurance company PAID for the cleaning and it wasn’t 6 months from the last…almost, but not exactly. Usually they will not fork over a dime for an early cleaning. My mouth feels weird. I cannot taste well. I am really sensitive to extremes in temperature or even the slightest hint of spicey (darn it anyway), and it lingers. It hurts the skin in my mouth. When I yawn it feels as tight as a drumhead along the skin between my jaws behind my molars. My gums right along the tooth line feel shriveled up, sort of. I was told not to use any harsh mouthwash at all. Just salt or baking soda and water. I have to use as soft a toothbrush as I can find, and have to be vigilant about flossing to keep my gums as healthy as possible.
My skin is very itchy in patches. It’s typical for me to have banged up hands because of the shinanigans I get into in this fixer-upper of a house. The bangs don’t heal in time for the next bang, so my hands have a lot of character these days. I have to be careful not to get an infection.
The G.I. thing is annoying. Nausea sucks. 8 weeks of intermittent nausea makes me so self absorbed at times I can’t stand it. If I take the anti-nausea meds it’s pretty guaranteed that constipation is next. Which would you rather be on any given day, nauseous or constipated ? Anyone? Anyone? Fortunately the only day I had diarrhea was day one cycle one. Hot, cold or spicey is not good for my mouth OR my intestines. There are times now in the cycle when I don’t notice anything. There are times when I notice everything and if I’m not hearing good digestion sounds coming from my abdomen, I do some massages recommended by my acupuncturist which can really help sometimes. I want so badly to be back to normal that I may order stuff I should not in the mexican restaurant. Thankfully my family likes my choices and will help me clean my plate! I should just eat apple sauce every day, probably. I get excited when I have a good bowel movement. (God, I cannot believe I’m writing this!) One of my brothers was visiting and I came out of the loo cheering. He looked at me with that “I don’t know if I want to ask what that was about.” face. (You know, I can think of quite a few people in my life…including this brother…who would be eager to brag about such an extraordinary “event”.)
The fatigue is annoying. It is what it is. On most days, I get myself to bed by early afternoon, but stuff happens. Like our refrigerator decided not to cool the other day, so I called the appliance guy. He instructed me how to diagnose the problem, so instead of napping, I’m trying to save the refrigerator, unscrewing things to check out the compressor, pulling the guts out to see why the cooling that works in the freezer is not working in the fridge. Put the darn thing back together, food in coolers and hit the bed at 3:30. I don’t do well with later afternoon naps. Let’s just leave it at that.
Emotionally, I have found myself short tempered or overly sensitive at times and I just don’t like being that way. I’m ok with it because it just is what it is. I observe myself saying/doing things that I don’t like. I am truthful when someone asks how I’m doing. It’s such a loaded question these days, can you imagine? IF it’s a good day, I say “today I’m doing ok”, because today is all I’ve got. It’s all I’ve ever had, but it was easier to overlook the junk when most days were OK. I’m not as sad at this point as I have been. A, (15), asked me the other day when she was home sick from school, why I have been so sad. She was wondering if there was information we have not given her. I assured her she knew everything we knew. The sad is not about a bad outcome, at least I don’t think it is.
My hair loss has really been an issue to contend with. I think gradual hair loss must be hard…sudden hair loss is quite a whallop, at least for me. I don’t like not having hair. I’m dealing with it. I’m into the comfort-over-fashion thing (which is consistent with how I’ve been for a long time), and wear cotton hats most of the time. When I go to work I feel like I have to wrap my head so I take out the scarves. Seeing it flowing in the breeze the other day gave me a sense of something like my hair blowing, and that felt pleasant. It’s annoying to have something on my head all the time, especially because ALL of my hair did not fall out. I have the 6 o’clock shadow on about 60% of my head. It acts as velcro to keep the hats and scarves in place, which I have learned is a blessing. I walk around at home without anything covering my head when I get hot or sick of having something on. If I am outside, in the car, or out in public, baring my head feels cold and vulnerable. If it were summer I may have dealt with the vulnerability by now, but since I like being warm, I don’t really have to deal with it. Plus there are cool winter hats that I can wear now. When I had hair there was so much of it that serious hat head was a deterrant to wearing hats for too long.
The only other thing I can think of that is in that loop that I get knocked into, is my chemo brain. Yesterday I was at work and found myself talking with 3 other women. 3 out of 4 of us have had to deal with breast cancer. I think the odds are 1 in 8, so this was really a remarkable ratio. All of us were in our 40’s and 50’s. Is it premenopause, menopause, genetics or chemo that we are describing? Who knows, but geez, chemo sure exacerbates things. I was told it would put me into menopause, which I have not noticed yet. (What an entry THAT will be, I’m sure!!) It’s like I just cannot focus at all at times. It’s like it enhances my natural attention deficits. I really appreciate this. And I’ll have to give you a warning. It seems to be contagious!
SO as I re-read this, I am aware that I feel like I’m whining, but really I’m just telling it like it is. Truly, I’m not judging myself. I received a card (with sound) the other day that was PERFECT. It pretty much sums it all up. For those of you who grew up with Gilda Radner on Saturday Night Live, this will bring back a smile. We found the card/recording on YouTube, but could not find her live, so you’ll be looking at the front of the card. Thanks Roseanne Roseannadanna.
So that’s the skinny on what I deal with on a day to day level. I don’t blog when this is going on usually. It also MAY be that I’m having such a great normal day that I don’t think of blogging. Going to soccer, taking our son to a party, raking leaves, going to work, going out to dinner with my family, hosting six 15 year old girls for a halloween overnight… you know, stuff like that. I can understand from a concerned person’s perspective that silence can be interpreted that things are not going well. (Is the glass half empty or half full??) Please be assured, that if you are getting anxious, that you are WELCOMED to call us. If we are out having fun we won’t pick up. If “I’m depressed, I gained weight, my face broke out, I’m nauseous, I’m constipated, my feel swelled, my gums are bleeding, my sinuses are clogged, I’ve got heartburn, I’m cranky and I have gas” you probably DON’T want me to pick up! We both DO check email almost daily, so if you are curious, please just comment on the blog. It goes right to us and we will get back to you. You being in the know is important to us.
Today I am only tired and itchy. I feel on my way out of the hole. I have some energy, some appetite and am in a good mood. Thanks for sticking with me and us through it all!