Expect trouble as an inevitable part of life and repeat to yourself, the most comforting words of all; this, too, shall pass. - Ann Landers
A story in two parts: 1. A journey through breast cancer, dissertation, and life. 2. A story of Castleman Disease, unemployment, and living in a COVID-19 world
Monday, June 9, 2014
I've Been Slacking
I can't believe how long it has been since I've sat down and written anything. It certainly isn't because nothing has been happening. I mean if nothing else I have to celebrate the fact that I actually am finding hair in my sink again when I clean the bathroom. Well, maybe celebrate isn't quite the right word, but it certainly is a sign that things are getting back to normal. I'm sure you will all be surprised that there are a number of doctor's visits to update. Even another procedure where I got tattooed areolae has yet to be chronicled let alone two wonderful trips to Florida. I guess I just needed a little break from writing, but now the muse seems to have returned and I'll try get caught up. After all, I would hate to share the bad news and keep the good all to myself.
Wednesday, February 19, 2014
And the Beat Goes On
Amazing news, my dissertation has been approved to move forward for defense. Now I just have to remember what I wrote and present it in a manner that makes it appear I know what I'm talking about. I am so excited to finally be at this point, but must admit that just the thought of the trip to Gainesville exhausts me. My amazing father has decided to escort me and I admit that while I want to believe I am capable of doing this on my own, it is a relief.
Visited Dr B today. Reminded me to start taking aspirin about a week before my flight. He also started me on another drug to deal with the hot flashes. Wonder what I will need to take to deal with the side-effect of this drug? It seems like a never ending cycle. I'm not sure it has really hit me yet that I am on the maintenance stage. There are no more treatments or surgeries, except for the foob tattoos, but really the hard stuff is over. I have great hope for 2014, a new beginning of sorts. I wonder what I will do with all my extra time? Maybe get a life?
I told someone that I was no evidence of disease (NED) and he replied, be glad they don't call it "no evidence of remaining disease." Then they would call you NERD. I laughed so hard, that would be so appropriate.
Visited Dr B today. Reminded me to start taking aspirin about a week before my flight. He also started me on another drug to deal with the hot flashes. Wonder what I will need to take to deal with the side-effect of this drug? It seems like a never ending cycle. I'm not sure it has really hit me yet that I am on the maintenance stage. There are no more treatments or surgeries, except for the foob tattoos, but really the hard stuff is over. I have great hope for 2014, a new beginning of sorts. I wonder what I will do with all my extra time? Maybe get a life?
I told someone that I was no evidence of disease (NED) and he replied, be glad they don't call it "no evidence of remaining disease." Then they would call you NERD. I laughed so hard, that would be so appropriate.
“Because one believes in oneself, one doesn't try to convince others. Because one is content with oneself, one doesn't need others' approval. Because one accepts oneself, the whole world accepts him or her.” ― Laozi
Friday, February 7, 2014
Once Upon A Time
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' - Eleanor RooseveltAnniversaries are funny things. They are ways to celebrate joyous moments, but they are also there to remind you of those things that changed your life, and not always for the better. One year ago I got my first mammogram, and was convinced there was nothing really wrong. The little voice in my head started whimpering when they wanted to do an ultrasound, but it didn't start screaming until the radiologist wanted to see me. That seems so long ago now, and yet it has also been the shortest of years. Life now is broken into BBC and ABC. No, not British Broadcasting and American Broadcasting, but Before Breast Cancer and After Breast Cancer. Or maybe it should be BF and AF, Before Foobs and After Foobs.
Don't wish me happiness - I don't expect to be happy it's gotten beyond that, somehow. Wish me courage and strength and a sense of humor - I will need them all. - Anne Morrow LindberghSo very true, survival is more than just putting one foot in front of the other, it's laughing when you trip over your own feet. Laughter and friendship make even the worst days possible to deal with. It is said you never know how strong you are until you are tested, and this year has been more of a test than I ever wanted. Yet as I look towards the end of this journey, and at the end of my life as a doctoral student, I wonder what am I going to do with all this extra time and energy?
Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend. - Albert CamusI have been so blessed with the team I have had throughout this journey: friends, family, and medical. I hope that some day I can pay it forward. To face adversary and survive is wonderful, but to use this journey to help others I think is the next part of the journey.
Monday, February 3, 2014
Hey Guess What I Have Today
No really, guess. Yup it's another doctor's appointment. This time with the oncology surgeon. The good news, the visit was short and sweet. Just a quick check of the foobs, some talk about how we will move forward, and some updates. This kind of doctor's appointment I can handle. Of course there are more appointments with more doctors coming up, but it seems to be nearly manageable now. I guess the docs will have to find someone else to buy their Porsche now. I am still waiting for the body to feel "normal," to feel like my body again, to not be ever aware of the foobs and to sit up without the tummy scar reminding me of its presence. Still trying to deal with fatigue, nearly walked the dog in my sleep the other day, as I swear I was nodding off as we rounded the block. I can almost see the finish line, but I can't help but wish I'd already crossed it.
In other news, I have delivered a complete draft of my dissertation to my adviser. I get to be happy about that for a few days while he reviews it. Then ... well guess I'll deal with it when it happens. No sense second guessing what I wrote.
In other news, I have delivered a complete draft of my dissertation to my adviser. I get to be happy about that for a few days while he reviews it. Then ... well guess I'll deal with it when it happens. No sense second guessing what I wrote.
Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude. - Thomas Jefferson
Tuesday, January 28, 2014
Nipplerollaphobia
Every day when I take off my bra and all my nipple protective padding there is that moment when I wonder if today is the day I'm going to see one of those nipples fall off and roll down on the floor. I mean nobody has time for nipplerollaphobia. These are the things nightmares are made of.
Today I had my first follow-up visit with PRMA to check the status of the latest surgical revisions. Nurse H was happy with the progress. Only comment was to make the holes in the nursing pads bigger and stop taping them to my breast. They should now be stuck to the bra itself. This has lead to some interesting logistical problems. How does on know where to place the pads and their nipple holes before the bra is on? Sharpie anyone? There is probably some geometric formula for this, but I must have been sick that day. Luckily it wasn't a question on the GRE. Still working on a best practice for this one. Currently it is still a two woman job. I am sure some day Mom would love to go home, so at some point we will work out some genius way I can do this myself.
So H said I was past the stage where I needed to worry about my nipples falling off; I only need to be concerned if they turn black. Oh yes, much better.
Today I had my first follow-up visit with PRMA to check the status of the latest surgical revisions. Nurse H was happy with the progress. Only comment was to make the holes in the nursing pads bigger and stop taping them to my breast. They should now be stuck to the bra itself. This has lead to some interesting logistical problems. How does on know where to place the pads and their nipple holes before the bra is on? Sharpie anyone? There is probably some geometric formula for this, but I must have been sick that day. Luckily it wasn't a question on the GRE. Still working on a best practice for this one. Currently it is still a two woman job. I am sure some day Mom would love to go home, so at some point we will work out some genius way I can do this myself.
So H said I was past the stage where I needed to worry about my nipples falling off; I only need to be concerned if they turn black. Oh yes, much better.
"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~Barbara Bloom
Wednesday, January 22, 2014
Ah Vanity
I am a week out from the latest surgery. While not as difficult as the first surgery I feel I have lost all the gains I had made. Not sleeping well still. My back still bothers me from the shingles and the hot flashes are very well timed to occur every 1-2 hours so I wake up either hot or freezing and have to adjust the cover situation. Makes for a less than restful night and the brain is definitely on the fuzzy side.
They seem to have given me a surgical bra one size too small and the foobs are none too happy with it. Luckily I still have the old bra from the last surgery. I wonder how long after surgery before you could decide the nipples are going to stay in place not be going rolling down the hall. Every time I pull off all my layers in order to take a shower there is always a slight moment of anxiety as I check to make sure they're still where they are supposed to be. Ah vanity, the things we do in your name. Is it wrong to want to keep the nipples actually attached to the breasts? I wonder why our body image makes up so much of who we are, or at least who we think we are. I sometimes wonder how I would handle not having breasts at all. However the idea of not having reconstruction never was a serious one for me. Some day I will wake up feeling normal and hopefully I will feel it was all worth it.
Work on the dissertation continues, and I am actually making progress. Will be sending out a couple of chapters to have some cohort members review. Still not looking forward to having to travel, but that is still weeks away, so no sense worrying about that yet. There are plenty of other things to worry about between now and then. Or perhaps denial will be the way to go. A nice leisurely trip to Egypt may be on the horizon.
They seem to have given me a surgical bra one size too small and the foobs are none too happy with it. Luckily I still have the old bra from the last surgery. I wonder how long after surgery before you could decide the nipples are going to stay in place not be going rolling down the hall. Every time I pull off all my layers in order to take a shower there is always a slight moment of anxiety as I check to make sure they're still where they are supposed to be. Ah vanity, the things we do in your name. Is it wrong to want to keep the nipples actually attached to the breasts? I wonder why our body image makes up so much of who we are, or at least who we think we are. I sometimes wonder how I would handle not having breasts at all. However the idea of not having reconstruction never was a serious one for me. Some day I will wake up feeling normal and hopefully I will feel it was all worth it.
Work on the dissertation continues, and I am actually making progress. Will be sending out a couple of chapters to have some cohort members review. Still not looking forward to having to travel, but that is still weeks away, so no sense worrying about that yet. There are plenty of other things to worry about between now and then. Or perhaps denial will be the way to go. A nice leisurely trip to Egypt may be on the horizon.
"It's not denial. I'm just selective about the reality I accept." - Bill Watterson
or maybe
"I reject your reality and substitute my own!" - Adam Savage quoting Dr Who
Wednesday, January 15, 2014
Reconstruction Part 2
And so it begins again. One more visit to the hospital to be knocked unconscious and have men rearrange my body. On one hand it is really amazing what they can do, on the other hand is there no such thing as modesty anymore? Abandon all hope ye who enter here. This is just one more step in the process, and one more step closer to being done. Surgery didn't start until 1:00 so there was no having to show up at crack of dawn, of course that was more time to go without food or drink. There is always a trade-off I guess. Had a different anesthesiologist this time, another retired Air Force doc. He mentioned I was still anemic and that there was an extra long beat showing on my EKG. However, he didn't feel that it was significant, and could even be from the positioning of the wires. The body is slowly bouncing back.
My plastic surgeon got out the sharpie and marked everything he was going to work on, but overall he was happy with the shape from the first surgery. I guess that is good, should mean less work to do during this surgery. And less work means easier recovery, right? Right? I hope so. The body and spirit is getting a little tired of all of this. Was a little nauseous coming out of anesthesia this time. Nurse gave me some drug and that helped a lot, but throat was so raw I had a hard time even eating saltines. Ah saltines, the food of champions. No hospital stay this time, we got to bundle me up and head home just about the middle of rush hour. Guess I should have taken a little longer recuperating, but I really wanted out of there.
My plastic surgeon got out the sharpie and marked everything he was going to work on, but overall he was happy with the shape from the first surgery. I guess that is good, should mean less work to do during this surgery. And less work means easier recovery, right? Right? I hope so. The body and spirit is getting a little tired of all of this. Was a little nauseous coming out of anesthesia this time. Nurse gave me some drug and that helped a lot, but throat was so raw I had a hard time even eating saltines. Ah saltines, the food of champions. No hospital stay this time, we got to bundle me up and head home just about the middle of rush hour. Guess I should have taken a little longer recuperating, but I really wanted out of there.
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'" - Eleanor Roosevelt
Thursday, January 2, 2014
It's OK if WHAT happens?
Had another pre-op visit with H at PRMA today. This time is for revision and nipple creation (how odd does that sound?). Surgery should be only 3-4 hours long and the recovery only a week to ten days. I'm taking a week and a half off from work. Hopefully if I remember not to push myself there will be no repeat with the shingles. My back still has nerve pain from that little episode. I was just starting to get back into a routine with work and dissertation. I have even been working out a little at the gym at work. Only half an hour, but still it was a start. I have got some work done on the dissertation as well. Really hoping to get that done by the end of the month.
So, back to the pre-op visit. Don't have to give up coffee this time as there will be no reattaching of blood vessels, so that is good, for me and everyone around me. Also can stay on allergy meds, which being cedar tree pollen overload time is a good thing. Will have to go get labs done next week to ensure blood counts are in an acceptable range and heart isn't going to poop out on me during anesthesia. Will need to get some nursing pads and cut holes in them to help protect the nipples. The little things will needed padded protection for several weeks. Speaking of nipples, the quote of the day is "it's OK if a nipple falls off and rolls down the hall, we can make you a new one." Huh what? Um no, so not OK. Intellectually I understand what she is saying, it is not medical emergency, it happens, but mentally and emotionally it is so not OK. I don't want to have to go and have this procedure redone, let alone pick one of my nipples up from off the floor. Of all the things to have to worry about, that was never on my radar.
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