Before I knew it, it was almost 2 weeks since the last entry. I saw a dear, fellow snow-loving friend at work who said that she checks the blog every Tuesday and Thursday and was so excited that there were no entries because it must mean all is well. (There’s a G.O. if I ever met one.)  Indeed. Thank you all who are still faithfully checking. My plan is to keep this blog going at least through my meeting with the surgeon at which time we will review the mammogram I am to have this month. I have had more thoughts and believe this is still the forum for them.
Well a quick update is in order. I had follow ups with both oncology and radiation oncology last week AND my annual PCP visit.  Bone density is NORMAL. Liver funcitons are NORMAL. Blood counts are NORMAL. I have not heard about my Pap results, but they said I’d get a call if there was a problem and a letter if there was not, and I have not had a call…yet. Oncology wants to order a CT scan of my torso and pelvis before my next follow up in 3 months, just to monitor activity on my liver where something showed up in the early CT. The follow up PET showed nothing.  Â
When I spoke with the radiation oncology PA, I learned that the radiated skin now has something I will call cellular memory. If I go out in the sun without SPF 50,000 on 🙂 the pink rectangle of radiated skin will emerge, even if that particular part of my anatomy is not directly exposed. When she spoke about the next radiation oncology follow up, I asked how many different providers I would need to continue to see. Who’s the boss, sort of. I asked the same question to Dr. Oncology. It seems to me that this is another issue that does not necessarily have one path to follow. Basically here’s what I’m taking from this: having 3 or 4 eyes and hands on the issue (or the TISSUE to be exact), is not a bad thing. I can spread out the visits so if I have them every quarter, a different provider is providing input. Not a bad thing, but it opens me up for confusion and differing points of view.  I NEED A GURU!  Ok, maybe not, but I do have to think about what I want to do with all of this. For the next 6 months, I’m just going to follow the path. Surgeon in July, Oncologist in September, Radiation Oncologist in December. All info will go to my PCP.
5 weeks into Tamoxifen, I’m feeling mostly well. I have a really annoying rash that is not going away along the radiated skin and on my lower left ribs and up my neck. At the follow ups we thought it might be just the pathway out of radiation, but I’m reading that it can also be a reaction to tamoxifen. Because it’s so localized, I’m not so sure it’s from Tamoxifen, but if it’s still driving me batty on Monday, I’ll give Dr. Oncologist a call. I was offered steroids for it, but you know me, GEEZ. I’d rather have needles stuck in me…in fact I have an acupuncture appointment this week. For now silvadene at night and cortaid during the day seem to work fine.
On the subject of the PORT-A-CATH. I left the oncology follow up without remembering to ask, so I called and left a message, simply wondering what is to become of the thing that has been so incredibly helpful through all of this. The perdiem nurse who was in that day called back and said ‘if you want it out, Dr. Oncology said it would be fine to get it out now.’ Since then, I’ve thought about it with the 3 month CT scan in the future and wondered if I should at least wait until that point.   Two days later I received a call from Dr. Oncology’s regular nurse who said that some people leave them in for years and years. She recommended waiting at least one year before considering removal. I assured her that it is not causing me problems. Going to have it flushed (every 4-6 weeks) is not a problem either, just remembering to schedule it might be challenging, not impossible. The thing that is most on my mind is that it is and has always been a bit troubling to A and E. Neither of them have liked the bump in my skin from the day it was put in. A reminder of the need for pretty serious medical intervention.  This will be something I talk about both with Dr. Surgeon and Dr. Oncology, inviting myself into the known potential conundrum. I’ll keep you posted on that. For now, the port-a-cath will just continue as part of my anatomy.
I am still showered with complements on my hair. This is from people who know me and are fierce cheerleaders AND from people I’ve never seen before. A cannot stop herself from just constantly running her fingers through it. She thinks it feels really cool, which it does, I have to admit, from the inside AND on the outside. But after one of her indulgent head massages, I feel like I should look like the guy on Eraserhead. IF you have not seen that movie, DON’T bother. You can just imagine what the main character looked like with a name like Eraserhead. The hair growth itself continues to thrill me to no end, and it is really amazing hair. Dense, thick, curly, all different colors. Because of whatever is happening with my estrogen, I’m kind of fuzzy on my jaw bones too, which is just another thing to marvel at in the marvelous petri dish that is my life.  I’m not the bearded lady, mind you, but it’s there.
Art work? Not much. I am active. I’m walking, gardening and doing stuff outside. Taking time for art is just not what my body wants or needs at the moment. Our garden looks beautiful thanks to the perfect conditions we are experiencing this spring. In fact if I don’t pick some of the lettuce today, we might miss out on some delectable leafy greens.  Â
I have a mammogram on the 22nd. I will write between now and then, I promise. B is wondering if we should start a new blog for the purpose of keeping in touch with those of you who have been so faithful on this site. Neither of us are interested in social networking in the big picture. I’m not so sure how I feel about it. Email works for me. This whole experience of sharing my/our thoughts has done more than serve the purpose for which we created it, and I’m really happy about that. Obviously I have no idea where it will go from here. Comments about that would be really helpful.
Two entries in as many days. Wow, I better not strain myself!
Re where to take the blog from here, you obviously still have a lot of insightful information to pass along, now relating to post intensive treatment adjustments and reintegrating back into the workaday life. As long as this is the case, the blog maintains a lot of merit relative to its original objective of offering perspective to others. When this becomes more routine seems like the time to terminate the exercise. What would the subject matter be of a P and B blog to follow this one? I could see you two starting a movement…
I’m smirking at the many ‘movements’ I’m thinking of in response to your comment sweet brother. I do have thoughts in the wake of the treatment experience. In fact when I wrote the last two entries I began another that is awaiting completion. I had more to say on that day than I thought, I guess. Like I said, I’ll keep it up for a while longer. I’m not big on leaving too much of a footprint these days. My journals from long ago are no longer important to me, nor am I interested in anyone reading what I wrote. This blog has never been a journal, but I’ve put forth some fairly private thoughts for public consumption…(and I’ve not been committed, yet!) If I were to consider what I’ve gotten out of writing, it would certainly be 1. knowing that people who love me are up to date and don’t have to worry about me, and 2. hearing from those who have commented. The comments have encouraged me to keep writing. It feels like a dialog when someone comments, like we are sitting on the deck, under the umbrella as the light rain falls, sharing our ideas and thoughts. This is wonderful especially with those of you who are not close enough to actually visit for a fireside chat with any regularity. It has helped probably more than any of you can know.
The P and B blog? Oh, I don’t know. B keeps a workout blog already (the link is on this blog BTW). I think I’d rather spend the time I’d be blogging, visiting you and hiking.
One possibility is to set up a blog site, and give folks, like R, and C, permissions to write posts to it as well. I think we all are interested in ideas, and music, and images. The social quality of such a site has value — but, it is more complicated, richer, ambiguous, than the sound bites that Facebook or Twitter allow. I have the domain we might as well use it. I’m probably going to move my exercise blog from blogger to this domain. I’ve seen some real value in having the site, value in keeping people connected and I think that can continue. Obviously, the breast cancer created a unifying thread. And I think that blogs that are focused on single thing tend to be better. Perhaps, “Wellness” in all of its diversity and complexity? Obviously one component of wellness is exercise, but, spirituality, social intercourse, nutrition, outdoor activities, all contribute to a persons identity and their wellness.
I like the idea of a blog with a central unifying theme, but minimal limitation on application of the ideas. The general wellness concept is an interesting one to me personally. I would be interested in participating and can imagine building a participating population even within our family and friends.