Ruminations – Page 4 – Riding a new Horse

Uncle Charlie made me think

Amidst breast cancer treatments life goes on. THANKFULLY I am feeling good so we’ve been very busy, as a family with two teenagers tends to be. The GUPDATE on the hot and sour soup is that it was FABULOUS (with no repercussions)!! Along with our Maine family, I have a relatively large family of origin and we have had an event. My mom’s brother died last weekend. He was 91. At my wedding almost 20 years ago he and I were dancing and he told me I was his favorite niece. A few carefully placed steps later he said “you’re also my only niece”. I never realized that until that moment. There may have been fewer girls in my family, but we certainly are GEMS! (Mom’s side had 4 boys and me in our family, Mom’s brother had 3 boys and a girl and Mom’s sister had 4 boys and Dad’s brother had 2 girls and a boy.)

Anyway, I’d been talking with Uncle Charlie more frequently since his 91st birthday in October. Our conversations were always tender and full of humor and love. We were able more recently to relate to one another’s medical issues and he was always very encouraging. On the Saturday before he died, I was on a long call with my brother and I noticed Uncle Charlie was ringing in. I don’t know how to work that darn call waiting thing, so I made a note and called him back on Sunday. He sounded so tired. Basically he said “All I can do is sit and think and I don’t like that.” This is coming from a man who has been very active all his life. I don’t know for sure but I think he was playing golf until maybe 2 years ago? Always appearing fit both in mind and body, my uncle was very much alive. We spoke of gardening and he is the one who told me the missing piece to my pasta sauce…my grandmother never put onions in her sauce. I will miss those tid bits that can only come from that generation, so I’m planning on squeezing as much as I can out of my mom (87) and her 93 year old sister. (Their other brother’s ship, the U.S.S. Sims went down in the 40’s, and we never had the honor of meeting him.)

Uncle Charlie and I spoke about cancer and about how we each were working to try not to make it the ONLY thing in our lives. Since his birthday, his medical issues were becoming the ONLY thing in his life. This was so disappointing to him. He had a wonderful partner who lights up rooms when she enters. He had a wonderful daughter who was there much of the time. He had terrific and very funny sons and grand children and great grand children and nieces and nephews and friends and siblings who loved him. But this was not enough to sustain his enjoyment of living. When I asked my dad what he thought about his own mortality, he said “why would I want to leave this wonderful family?” , but the time came when he was able to let go. I got the sense at the close of my call with my uncle that he was on the brink of making a decision for himself. This decision was not one he necessarily wanted. He was a full blooded, first generation Italian American, and there was no darn way that he was going to linger. I was not there when he died. I don’t know the whole story. But from the bits and pieces that his children, my cousins, have generously shared with me, I think he made his decision to leave this body behind. The last thing he said to me was that he knew my treatments were hard, but that I would be fine. “You just have that way about you, only niece Patty, and I love you.”

SO, what does this have to do with A Family’s Life with Breast Cancer ? Well, I have never had a life threatening illness before. Just thinking about that gives me pause. My body was attacked and we fought/are fighting to permanently evict the intruder. My body is NOT tired as Pop and Uncle Charlie’s bodies were. I plan to give it my all, like usual, and live fully. I’m not tired. That is what makes a possibly shortened life very sad to me. However, in spite of all of this, I don’t put myself in the catagory of someone who will die prematurely. I went to a follow up appointment with the surgeon yesterday. I stopped when I got to town and picked up a salad and right there was a beautiful bouquet of Gerber Daisies. And yea, they were pink. So I snatched them and when I got to the reception desk, I asked the nurse to put them in the doctor’s office. The doctor greeted me with a big smile, a thank you and hug and checked out the incision site saying that it looked great. We spoke about follow up care. She will now be ordering my mamograms and I will see her at 6 months and then yearly thereafter. I like the idea of her being on my team now. We spoke about the meeting with the radiologist and this current chemo. “Basically the cancer is out and Taxol and radiation gives you the best chance of avoiding a reoccurrence.” So I thought maybe I could now say that I HAD breast cancer…hmmmm. I asked her if she knew the numbers relative to doing radiation or not. We have decided that it will happen, but I was curious how that changes our odds of reoccurrence. She said something about “the survival rate” and I didn’t really hear the rest of what she was saying.

Lately I go along with my days, grateful beyond belief that I’m feeling as good as I am. SO giddy about this sprouting dark hair on my head. Thrilled at the thought that the cancer is OUT thanks to chemo, surgery and tons of prayers and loving thoughts. And in my Winnie the Pooh way, I say, OK, what’s next? Let’s move on. Some have told me that it’s “OK to share” my feelings, it’s “OK” to have down days. I may be fooling myself and others, but I don’t usually have down days. I don’t usually dwell on things. Maybe B or A or E would have other things to say about how I am. I know when I’m tired I’m short tempered, but that has nothing to do with this journey. I’ll ask them. I know that I have today. I know that I do not choose suffering. There were darker, sadder, more tired days during the first chemo episode. But I think the readers of this blog are getting all I got.

Uncle Charlie gave me some of his last thoughts. That is a gift. He showed me a lot about living life fully. Numbers and survival rates are not as important to me at this point in the journey. When we were planning the course of treatments they certainly were, but at this point, we have decided to go the length of this marathon and sometimes questions like the one I asked the surgeon can become obstacles. At every family affair Uncle Charlie ALWAYS found a place to park his body and close his eyes. At our wedding it was in his suit on the lawn next to the patio. At reunions he always found the hammock. His usual posture was on his back with one ankle crossed over an elevated knee and his hands clasped across his chest, eyes closed. That is the indellible image I have of him and it reminds me to trust the process, to trust my sense of what my body needs and to dig deep into my sense of spirit and peace.

Uncle-Charlie-Napping-150x150

11/30/09

I intended to publish this last night, but lost my server…so I’m putting it up early this morning. Happy December everyone.

Life has felt very simple and normal these past few days. Our Thanksgiving was really fun with friends, terrific eats and lots of laughter. At this point I have an appetite, and can taste everything. My sensitivity to hots and spicy is a thing of the past for now. Bring on the jalapenos and zippy mustard. I can even TASTE my favorite jasmine tea which lost its’ luster around cycle 2. (That was REALLY a bummer.)

Life after surgery is going ok. I only have a band aid now over the hole where the drain exited. I’ve noticed a slight bruising of sorts where the drain traveled in a “C” from my arm pit around to my sternum and down to my lower ribs at my side where the exit hole is. The most difficult movement right now continues to be that snow angel wing movement. I have been putting my hand behind my head when I read or lie down. Even that is a challenge, but I can feel the changes every day, thankfully. When I open my center by pulling my shoulders back, I feel great and can breathe deeply. I can do some modified yoga stretches with my arms.

I speak about admiring everyone’s endurance, the love, support, calls, cards, prayers, which are all still coming on strong. I see what I THINK is wear and tear on B who has had his sights on me and our kids with such intensity since August. He is doing this his way, “pickin’ em up and puttin’ em down” as he said in his entry back in October. He does what is in front of him. Right now I feel so much better, have more energy and tend to start bouncing around , sort of like a Tigger in Pooh’s clothing, and he’s exhausted some times…. I have to use restraint which can be hard for me, to observe the space he needs. Even though I’m working a lot more, I’m doing it from home most days, so I can lose myself in the fire’s glow, or spend some time with a kat or two or three, or I can see that the bird feeder needs more seed, or lie down for a quick little rest ANY TIME. I have long periods of time where no one is asking anything of me, I am nourished by silence and am working at my own pace whether it is work-working, or healing work.

I guess today I kinda felt like a puppy, wagging my tail at the end of the day when B came in after a long day away. (Those of you who know us well will have NO problem visualizing that scene…especially with my new groovy colorful hat with the purple bells.) This morning he woke and took A to work out together before school at O’dark:30. He dropped her off at school and went to work, and did his usual noon workout. He left work at 4:30, picked A up from wherever and came home. He ate dinner and went out at 6:30 to be a scout master for some 15-20 young men in our town until 8:30. He may argue that he is not “exhausted”, maybe it’s me whose exhausted watching him do his thing.

It felt good to serve my family a home cooked meal (enchiladas are challenging for me and I keep trying new ways to get them so they are not just a pile of yummy mush…if any one has a tip, please share!) It felt good to get HIM the hot water bottle for his HAM of a hamstring that just won’t quit. It felt good to LEAVE HIM ALONE when he decided he needed to go to bed before me (quite rare). Of course, being the me that I am, I’ll sneak an ultra warm snuggle when I finally quit, so the longer I put off going to bed, the warmer it will be under those covers.

What’s my point? I guess my point is just as B has had to do what he could do for me during all this, he could not take away what was mine to do. He has his own row to hoe in this breast cancer trail that we’re on, his own horse to ride. I can’t do it for him, but I can be nurturing when I have it to give and I can observe his needs and respond accordingly, if I can control my Tigger-Poohishness. Even with that challenge, I’m so happy that I am experiencing this today.

Eye on The Ball (reprise)

Keeping stride with the whole process from diagnosis of breast cancer to life beyond treatments is a skill we are developing slowly. We don’t know if it will help anyone to hear our thoughts on this, but wanted to put some together.

B: I think that once they stage the cancer and define the treatment plan it is important, as a participant, to not listen to the results of subsequent tests or pathology reports. OK, let me explain. Our Oncologist asked us at our first meeting if we wanted to hear the “worst case scenario”. P asked for it and so we got it. Once was sobering, but fine… I think the valuable question to ask when the Dr. has new test results is “Will this change anything in our treatment plan?” If they answer no, then ask yourself do I really need to know this? How fragile am I at the moment? If the answer is “yes”, then either for good or ill you have to go in where angles fear. The emotional highs and lows make the trip harder. In order to have the energy and the optimism necessary to stay on track I think it is important to control the information you take in at least while you are in the middle of the treatment.

P: I think I mentioned a few entries ago that I’m learning what to pray/wish for. ENDURANCE not test results. When people have seen or heard me post surgery many have been surprised at the fact that I was up and about, or the sound of my voice. Some actually tried to use the word ‘normal’ in a sentence like “you sound…….normal”. This I think was the result of experiencing how the chemo affected me, and getting stuck there in sympathy or love. I had frequent reminders from some that this will pass, you will come out the other end, keep on truckin’. Do marathon runners hear the fans when they give them encouragement at mile 10…mile 17…mile 20? Do ironmen and ironwomen hear us when we shout encouragement after the grueling swim and before the cycle ride? I think they do, they must or else how could they make it to the finish line? Intrinsic motivation may do it for some, but crap, I could not do this alone.

B: I am not a long distance runner. I’m a sprinter. So these metaphors of endurance are daunting to me. Obviously it is important to play to ones strengths. And so for me, I set my sights much closer in, about 5 days. I can sprint through 5 days. So, when we were dealing with the Chemo, the 2 week cycles, broke down into 5 days of being “ill” and 5 days of feeling progressively better, with 3-4 days of slop. Similarly, I broke surgery up into a set of sprints that I could manage. The metaphors are important so important that you need to pick ones that really work. Too, I haven’t felt the need to argue or philosophize about the difference between our metaphors. Cancer is a big tent, and “Whatever gets you through the night.”

P: At first diagnosis when I was incubating in Tucson, I was so focused on getting the word out to loved ones and learning about the value of second opinions. It WAS the test result that changed the course of our lives. It was at that time that we’d heard the word “neoadjuvant” for the first time.

At the first neoadjuvant chemotherapy infusion I was focused on my reaction and got busy coping with the various and sundry effects on my body, mind, spirit. I tried to protect my loved ones from it to no avail. WE were in this together, it was not just me. At subsequent infusions I remained focused on making it through the most challenging first 3, 7, 10 days with something in tact, maybe it was my dignity. Every once in a while I’d check in with my body and thought I could feel progress on the size and shape of the tumor. But most of the time I had my head down like a good Taurus and was focused on one thing. At that time it became difficult to see the ball.

I emerged on day 15, cycle 4 feeling a huge sense of relief, and found myself going under the microscope again for tests, scans and meetings with oncology and surgery. It was a relief to hear PET scan was negative again, it was a relief to hear that perhaps what remained was scar tissue, it was both exciting and disappointing to hear comparisons between early ultrasound/MRIs and new ones, so much progress and yet concern still remained. It was both expected and disappointing to hear that mastectomy was the next step on this long and complicated path. But it was NOT complicated for the providers. This IS the treatment for this stage and type of cancer.

We thought about second opinions, at what point are they moot? If things came through negative all the way, I’d want to be really sure. BUT pathologists spending hours looking over microscopic cells, normal ones, chemo affected ones, ones that still were tumor affected…what would another opinion tell us? How likely was it that a pathologist would mistake a health cell for an unhealthy one? How long did we want to wait for the next phase of treatment waiting for more results?

After mastectomy we and I felt such relief. Well, I think B and I did. The kids only saw a body that was unfamiliar to them, and I wouldn’t call their experience relief. It was an aggressive way to rid my body of this cancer. SO was chemo therapy with Adriamycin and Cytoxan, very aggressive drugs. Why then would we even stutter and not follow through with recommendations for an axillary node dissection when the tumor cells were still floating about? I think it was during that conversation with Surgeon that I wondered why the hell we would step off the path? I’m recovering from mastectomy, why not recover from both at the same time? At this end of surgery, I’m SO glad we made that choice…

Discussion with oncology identified that the only thing in question is whether or not to use radiation in addition to the final chemotherapy. THIS would be determined by the lymph node involvement. Chemo therapy is 12 weeks at this point in the treatment regime. It’s so easy to get caught up in the 12 weeks and lose sight of the ball again. 12 more weeks without hair, 12 more weeks with questionable reactions, 12 more weeks of uncertainty about whether or not I could get back in a routine about living rather than treatment.

B: One of the side effects I’ve noticed for myself, is disrupted sleep, and cancer nightmares. The nightmares are sometimes just a continuation of P’s situation. Sometimes they are fears for myself or other loved ones. I’ve mused over the years that what I fear isn’t death, but infirmity, incontinence, and incompetence. I think that our cancer fight brings that into stark reality, though, it isn’t as easy to say emphatically that I don’t fear death. Is it that we fear death, or that we fear the unknown, is it that we fear facing it alone? I don’t know, but I do know that I dread a lingering life that perhaps doesn’t even see death’s approach. And I can imagine living this way in perfect physical health. In any case sleeping when one can becomes really important, naps at other times become important when one is awake in the early morning.

P: I am not dreaming much at all. In fact B is accusing me of taking all the sleep (something I’ve been guilty of in all our 20 years together). I wear cotton hats at night and they are big enough to migrate over my eyes as I sleep, and every once in a while I am aware of B peeking under the brim to see if my eyes are open or shut…it’s pretty cute actually. I don’t like that B cannot get all his rest at night…and I am grateful for my sleep and the absence of unpleasant dreams. When I wake up, every single day, I experience this body, and I say to myself at least once something like “wow, it’s really me”…or “this is my body from now on.” Denial works its wormy way in and I get caught in thinking that this may be a very long dream. I am going to live with this body and the reality that cancer can return for the rest of my days. It’s something I did not think about at all when I did not have cancer. It’s different for me than thinking “I could get hit by a bus today”. I have never said that to myself every day I venture out. I don’t know if I fear death. Like B, I don’t like the idea of not being able to take care of myself. I suspect I’ll talk more about mortality in another entry because I could go on here. I must say though, that my plan is to LIVE cancer free and not be worrying about the intruder each day. That will take time. THAT’s the ball.

We’ve mentioned occasionally throughout this blog that we work as a family to not choose suffering. This has enhanced my awareness of the love that has always been in our lives, in our home, around us in our community and from afar. I think this experience has sensitized us at a time in this world where it is so easy to be desensitized. It has awakened me. Funny, I never even knew I was asleep. It’s so easy to get caught up in the mundane.

B mentioned in an early entry that the time for cancer diagnosis and treatment is something like gestation. 9 months and we come out the other end. Not with a baby, but with a body that is rid of a significant amount if not all of the cancer. The baby is the renewed ability to live in the moment. At least for me it is. The delicate blalance for me is keeping my eye on the ball while living in the moment.

Here’s what’s going on

A little update for you all who are curious about making or reading comments on this blog. Check out the new page at the top ‘stapled’ between the ABOUT and WALK4HOPE pages. There is instruction about how to post/read comments. Thank you so much for asking for this, and know that we love hearing from you. You’ll all be bloggers yet!

As the dust settles from Monday’s little bomb, we are finding balance. I am reminded every day that it is endurance I must pray/hope for, NOT certain results from the next test or scan. We are chasing something we have no control over when we wish for the golden ticket. I have had so many conversations with friends and loved ones recently for which I am very grateful. We are being shown so much about our spirit with this experience. You all are feeling every bump and continue to hold portions of this experience that we just cannot manage ourselves. Your endurance is astounding.

We have agreed to show up at the hospital at noon Friday for a 1:30 surgery appointment. They will host me for 23 hours if we feel I need to stay. We also have the option to come home after recovery. I have had conversations with my PCP, the oncologist and two with the surgeon over the past two days. Oncologist answered lots of questions and basically said that her treatment recommendations are based on the national protocol for this stage of cancer, which is somewhere between 2b and 3a.

I told the surgeon that I did not mean to be a pain with my calls, and her response was “you are the most painless patient I’ve ever had”. How about that one. She explained that she did not do a frozen section on the two nodes she took out because of their small size and squishiness. She explained that the pathologist saw fibrosis in the nodes which apparently is the chemo affect on a cancer cell. There was a lot of this, and that tells us that the chemo drugs used were effective. Unfortunately there remained some individual cells in each node, and microscopic or not, they could be the host for another attack on my system if we don’t get them out. It will be helpful to the oncologist in her planning for the next stage of this treatment to know the extent of the involvement of this bunch of nodes. Surgeon explained that the surgery room is booked for 2 hours because of the time it takes she and her assistants to identify and avoid the nerves in that area. She will extract a triangular bunch of tissue in which the nodes are enveloped. It’s the pathologist’s job to locate the grapes, as it were, in the tissue. Surgeon will go into the healing incision to access this area, and will most likely take out the breast drain, so I will only have the arm pit drain to contend with for the next week or two. PCP had not yet received the information from the pathologist, but she was able to understand my report, and was very supportive of the decision we have made.

I continue to feel good most of the time. I worked myself away from the pain meds fairly quickly and stopped the advil yesterday. I’ve been given permission to work up to 30 hours a week at my discression, home or in the office, and am grateful to be able to do that as I feel up to it. Obviously recovery from this next procedure will take precident.

9 days post mastectomy I am feeling good about the decision not to get reconstruction right away. The area where my breast was is very numb. When I put my hand over it, I am feeling my heart very strongly with no interference from the breast tissue, it’s really an interesting sensation for me. I do not want anything there right now. I’ve been wearing B’s flannel shirts a lot since last week, and in addition to feeling like lumberjack woman, I am comforted by knowing his shirt is wrapped around me. (I’m hooked, what can I say?) I do not think I’m feeling self conscious about the shape of my body, but it’s easy in this cooler weather to camouflage that if it were important to me. It’s sort of like how I feel about having no hair, wearing hats and doo rags works this time of year and I’m nice and warm. I have started having what I call rookie warm flashes. I was told that I may go into menopause, and I may go out of menopause, and no one really knows how to judge what will happen. SO I’m just prepared by not wearing stuff I cannot shed quickly. My big sisters who are experienced at having power surges think it’s cute when I whip my hat off and shed layers, and are sharing great bits of wisdom about managing such things. I have not worked up to being hot enough during one of these for people to warm their hands around me like a camp fire, but I’m working on that.

At this point I’m getting familiar with the surgery procedure and feel fine about the anesthesia tomorrow. Again, that idea of closing my eyes one minute and opening them the next in the recovery room fascinates me. I’m sorry people who will be thinking about me during that period of time cannot join me in lala land. We know the ponies will be swirling all around us.

I know where the pony is.

Oddly the pathology report hit me almost as hard as the original diagnosis. Only a little of my energy is spent on wondering why that is. The rest is focused on getting centered again.

“The Pony” is in the people who have circled around us and are supporting us with love, and food. “The Pony” is employers who are accommodating both of us and our struggle. “The Pony” is the visiting Nurses Brigade. “The Pony” is the Surgeon, one of the States best, who seems to almost be taking this cancer as a personal affront. “The Pony” is the Oncologist, full of piss and vinegar, who believes there is no room for ego in the exam room. I am humbled by this all. I am a very private person, perhaps even shy, and so I would not expect this kind of outpouring. “The Pony” is lifetime partner who sparkles and lights up the room and draws friends and family and love to her and so vicariously I get to learn about these things.

I have struggled with the surgery, rather quietly, because I didn’t want to be the Eeyore to P’s Winne-the-Pooh. But, I’m not happy with this disease, at times I’m angry, and it is a struggle to point that anger in the right direction. The disfigurment that the disease has caused my buddy and lover SUCKS. The amputation of a breast is important to remove the cancerous cells, the Surgeon is a craftswoman, but it is an amputation all the same and it SUCKS. Watching chemo kick her ass, SUCKED. Knowing that she will possibly have a couple of numb toes, perhaps fingers, for the rest of her life as a side effect of the next round of chemo, SUCKS. Knowing that we likely won’t escape radiation SUCKS.

I’m willing to eat this shit sandwich and ask for seconds, however, if in the end I get to spend more time with this amazing woman.

There’s got to be a pony in here someplace

Those of you in the substance abuse field or in recovery may know Father Martin. He was a funny man who educated many about alcoholism. He told a joke in one of his lectures that went something like this: A man came upon a room that was filled with manure. A boy was shoveling and shoveling, and the man asked what he was doing. They boy said “with all this manure, there’s got to be a pony in here someplace!” Is that G.O. or what?

We heard from the surgeon today. Cancer was found in the breast tissue, one spot was 1.5 cm and the other smaller one was .7 cm. These were much smaller than the original scans/MRI showed, and seem to confirm that the chemo certainly did have an effect. This was also confirmation for us that mastectomy was the right choice and that feels good to me. There were also cells found in the nodes, unfortunately. Apparently the two she took were not the only ones, there were two in the breast tissue as well. All of them had activity that was more than just residue from chemo. She said she spoke with the pathologist and with our oncologist at length about this. The pathologist apparently spent a great deal of time going over all the information available. Surgeon and oncologist concur that removal of the remaining nodes in my armpit is the best course of action to prevent spread.

This certainly was not the information any of us wanted to hear. I said “shit” into the phone, and the surgeon told me I didn’t have to whisper. I asked if a second opinion could be gotten and she said the lab that the hospital contracts with could certainly send the tissue on. She asked about the drain and how the incision looked and suggested that we go up Thursday for a visit to talk more about this news and to look over the incision and drain. It occurred to me that this would be just another trip to Bangor, and I asked if there was a reason for not moving forward with surgery. I didn’t know what else there was to talk about. She felt that if there was room on Friday in her schedule, that it would be a fine idea if we were up to it. She could possibly take out the breast drain and put in the arm drain after removal of those nodes. She was going to check on her schedule and call me back.

I know at the beginning of all this I was not using the word fight and preferred to cradle myself and my body. Some of that, I think, was preservation of energy. I am learning that cancer treatment takes endurance like nothing I’ve ever had to muster before. As I see how far this cancer has gotten into my system and how close it seems to have gotten to spread into other parts of my body, my fight energy is materializing. I’m not trotting down this trail. I’m galloping when I have the energy, and right now I am aware of a very strong desire to hear that we have found the boundaries of this cancer. Am I being too hasty in planning have those remaining nodes removed so soon?

In the mean time I phoned two lifeline nurses. Both of them responded with information and support. They said it if there was some question or borderline information or if it came back negative that getting a second opinion at this juncture to inform the next step would be a good idea. The information given tonight was not borderline at all. One suggested that we may want to wait to get all this tissue including the remaining nodes in for a second opinion to determine what the next steps should be from an oncology perspective. I plan to talk with the oncologist tomorrow if possible to hear her side of things and what this will bring to the table with regard to her treatment recommendations. I will ask her about the risks of not getting the nodes removed as well. I am thinking that I’d rather just get it over with if we are given information to support that decision. I’m not great at making decisions. The bedroom is still white because I cannot decide on the color. B has always said that we won’t notice it after a while and he’s ok with whatever. This has proven true with say, light fixtures. I am relying on his collaboration to a great extent with decisions about my health. I am so grateful to have his help.

There is so much to think about and we certainly don’t want to be hasty. We can always cancel the surgery. It could be as soon as Friday at 1:30. It may be outpatient surgery since we have experience with drains now. It all depends upon the time she is done and what we feel is best at the time. Recovery will be different since it will be focused in my armpit, and will likely be more uncomfortable than what I’m experiencing right now. Talk about an area of the body that I”ve taken for granted…hmmm. There are possible long term effects and definite things I will need to know about the affected arm as a result of this surgery.

I certainly will be asking the cancer center to access the port on Thursday or Friday morning so that we don’t have a repeat performance getting the I.V. going as we did last Tuesday. I didn’t realize they could access it the day before, so I’m definitely going to look into that tomorrow.

Being a G.O., I’m on a march. I want to know what I think I need to know and I want to move forward. It’s so natural to take our eyes off the ball at a time like this. I voiced feeling disappointed by the news to the surgeon and with my family. We spoke about it at dinner. Funny, our children have their eyes on the ball. They reassured us of that. They acknowledged awareness that I will be out of commission longer, more time with a drain, more recovery, more family out of balance sort of stuff. But they both were very clear about where their focus was. We are finding a balancing point each time we have a challenge.

I hate how preoccupied B has become with this. He was very affected by the news today, probably more than he anticipated. I don’t know that it is as much putting too many eggs in one basket, as it is the roller coaster ride that is cancer treatment. He and I will make the ultimate decision together, of course. This is a long haul loaded with crossroads. This horse I’m on is one I’ll be on for the rest of my life. But I cannot wait to get to the end of this particular trail. I’m going to keep looking for that pony. Darn it anyway.

11/13/09

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?

Children

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.

11/7/09

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.

11/5/09 Day 16

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.