I had a perfect evening.
A friend came by after work and we had a late-afternoon mojito (part of my get fat quick plan), then after she left, we went out to dinner as a family at a lovely restaurant downtown - a gift from my brother and sister-in-law. As we were enjoying our meal, my husband asked if it was a Christmas gift or birthday gift or what, and I said, 'No, it's a cancer gift.' Since they live far away, they sent us a gift card instead of bringing us a meal like so many others have.
Afterward, we went to a Johnny Cash show - one of those imitation bands. It was a little late for the kids, but they know Johnny Cash, because I make them listen to him in the car when I get sick of listening to the Frozen soundtrack. Going to shows like this is not really my top choice of activity, but my husband really wanted to go, and I'm glad we did. I think the average age of the audience was, like, 65, though. LOL. The band brought A LOT of attention to the fact that we had brought our kids, saying how great it was that some parents were introducing the younger generation to the great musicians of the past. It was sort of embarrassing.
I absolutely love Johnny Cash. About 20 minutes into the show, I was overcome with an overwhelming sense of peace. Everything is going to be okay. I know it. I feel so calm, happy even.
I am so lucky. I have insurance, good insurance, and my husband and I have good jobs. We have money in savings, and what better use for it than life-saving medical treatments? I just ate dinner at a fabulous restaurant that someone else paid for, then went and listened to some of my favorite songs ever all night. Really, what is there to complain about?
I think part of the reason it has taken me so long to get to this point was just the horrible timing of my pathology report coming back when Dr. L was on vacation and I was getting ready to go on vacation. When I met with Dr. M just before leaving, he did encourage me to see a plastic surgeon ASAP and now I understand why. At the time, I knew this was tough but I didn't realize just how much easier it would have been if I could have met with a plastic surgeon before we left.
After I got home on Wednesday, I sent Dr. T a slight emo e-mail, letting him know how happy I was to get to meet him, that I had full confidence in him, and that he was the answer to my prayers. I thanked him for making an appointment I literally felt sick about into a very uplifting experience.
He replied early the next morning:
Waning,
Thanks so much for the email. I think it's unfair for women to receive news like that without an opportunity to discuss reconstruction with a plastic surgeon. So, I was very glad that we were able to meet after you met with Dr C. She is outstanding, by the way.
Attached is an information sheet that I put together based on some feedback from my patients. It will outline some things to consider when you get home after the surgery.
Please use this as a resource and reach out to me whenever you have questions and concerns.
Best,
Ty Tahm, MD
I feel so full of peace right now, I want to bottle the feeling up and carry it with me through the next few weeks leading up to surgery. It reminds me of my church-going days. One tradition in our church was greeting the people next to you with a simple shaking of hands and, 'Peace be with you.' They reply, 'And also with you.' So, dear friends, peace be with you, as it is also with me.
Saturday, July 18, 2015
Thursday, July 16, 2015
Farewell, Dr. L
I had an appointment with Dr. L this morning, one that I had set up while on vacation. After yesterday, there was actually no purpose to the appointment, but I went anyway. I wanted to tell Dr. L of my decision in person, and I actually felt really stressed about it, as evidenced by the fact that when the MA took my vitals, my systolic blood pressure was 128, my pulse rate was 106, and I had a 99.7 degree fever. I felt sort of guilty, like I had been sneaking around behind a significant other's back and was now dumping her. I even brought her flowers. (No, I'm not kidding.)
Dr. L was her usual wonderful self, and put me at ease right away. And fortunately, she brought up the fact that I had gone to see a different surgeon up at UH without me having to. I mean, I knew she probably knew, because she is actually part of the university health system, so she is on the same patient portal as the folks at UH. When she asked me about the appointment, I told her I had found a plastic surgeon who was going to do my reconstruction. I quickly added that I was very sad, because I really wanted her to do my mastectomy. She totally understood, though, and as it turns out, I was right. The DIEP flap reconstruction I'm choosing isn't possible in my town because it is so complex and requires a team of surgeons working very closely with each other, and we do not have a major medical center where this type of thing happens. So the choice is not a hard one. She said the only flap reconstruction that the plastic surgeon she works with does is a TRAM flap reconstruction, which is much simpler, but removes your transverse abdominis muscle. She agreed that at my age, a TRAM flap reconstruction isn't the best option because of the long-term effects/risks of losing your abdominal muscle.
She did express surprise that I had enough tissue for a DIEP flap, though. I said Dr. T was going to have to use tissue from both sides, which Dr. Google told me is called a stacked DIEP flap reconstruction, and is considered even more specialized than a plain old DIEP reconstruction. Then I added that Dr. T said I might need a fat transplant later, and he could take fat from my thighs, which I was pretty psyched about. LOL. She asked if we had considered using my butt, and I said that my husband liked my butt the way it was. Then she made a funny face and admitted, 'I'd feel weird having part of my butt on my chest.' Ha! She did say that taking fat from the thighs and injecting it into a reconstructed breast gave very nice results, and that this was a good option for me. Then she joked that I'd be looking like Barbie in no time.
She inquired about the possibility of sparing my nipple or maybe just the areola, and I told her I couldn't remember the details about why this would make the reconstruction more difficult. But I think I will e-mail Dr. T for clarification now. Dr. L said that nipple reconstruction never worked out very well, but whether or not having a nipple matters 'depends on how nipple-y you want to be.' Ha ha, yes, she really did use that term. Nipple-y. Seriously, I've thought a lot about this while on vacation, and spent a creepy amount of time looking at women's breasts, and nipples, and found my eyes wandering to Dr. L's breasts as we were having the conversation. No perky nipples. I told her the thing about nipples is that I don't want to be 'nipple-y'; in fact, I'd be more inclined to want my other nipple cut off so I just don't have to worry about them at all. I was surprised when she said some women actually do this because they don't want nipple reconstruction, but 'It is weird to have one nipple out there (THO, or titty hard on, as my friend from high school used to call it) and the other one gone.' This is what I love about Dr. L. She has a very buoyant personality, but yet she doesn't sugar coat things. She is the perfect combination of positive and realistic; light-hearted and serious. It might seem trivial to be thinking about nipple weirdness in the midst of a potentially life-threatening condition, but I've noticed that even terminal cancer patients mourn losing breasts, losing their fertility, and things that seem small when you are likely going to die within a year. Perhaps this is how we maintain a sense of normalcy, a sense of ourselves.
There is something comedic about the conversations that revolve around breast reconstruction, but maybe that is a testament to the conflicting messages women get about their breasts. It is funny and yet not funny at all. In the end, Dr. L said she thought I was making a good decision, and said that if she were me, she would do exactly what I'm doing. Her endorsement meant a lot, simply because I have such a great deal of respect for her. So I reacted appropriately and burst out crying (and unfortunately I'm not kidding).
From there on out, I think it was more of a therapy session than anything. We mostly talked through some of my emotions while she hugged me and I cried. She said she was honestly surprised that some women could come to her and so easily ask her to cut their breasts off, without a second thought, and said she felt like I had 'an appropriate amount of sadness.' And even though I'm having the mastectomy done at UH, I can still call her for anything; I'm forever a part of her 'team,' and We will get you through this. She said if I need any post-mastectomy care that is not worth driving up to UH for, she is happy to provide it - like, 'when you need your drains removed.' I made a face, thinking about the reality of it all. Apparently the drains you have in you after a mastectomy are pretty much The Grossest Thing Ever. Dr. L responded to my face and said, 'Yeah, the drains are pretty gross.' Ugh.
Toward the end, I told Dr. L the hard thing about cancer was that doctors who did oncology stuff were so amazing, top-notch. She replied that was a good thing, no? I said it was going to be really hard for me from here on out to find doctors who could live up to my standards. I think she appreciated that. Then we joked about different types of doctors, swapped information about a few, and she agreed with me that in general, orthopedists are THE WORST. I said I was certain that after all this, I would never ever be able to find an orthopedist who was even close to acceptable. Then I added somewhat jokingly that I was tempted, since the mastectomy will surely bring us up to our out-of-pocket maximum for health care, to have my hip reconstructed before the end of the year. I'm not really seriously thinking about this, just because it would be way too much trauma for one year, both emotional and physical. Based on the pain from the lumpectomy, I'm guessing the pain from the mastectomy would make being on crutches pretty impossible. Dr. L said that of course I needed to take care of the cancer first, but also empathized with how difficult chronic pain is.
Eventually she brought me some information about various cancer resources - therapists, support groups, and whatnot. A few of them actually look useful. One thing that looks interesting is that the hospital offers yoga classes every other Monday night for cancer patients, which I am interested in trying to attend. I feel like my body has sort of gone to hell over the past year, especially since losing my ability to do my favorite type of exercise, which is going on walks. I really want/need to do something physical, and yoga might help with my stress as well. At the same, going into a yoga class with seasoned yoga-goers (with fresh, perky boobs in tight, nipple-revealing yoga get-ups) seems somewhat stressful right now. A friend and I had discussed going to yoga together, but now with all of this, I don't see it happening soon. But yoga with other suffering people might not be so bad. LOL. And as Dr. L pointed out, the yoga instructor is an oncology social worker with an understanding of people's needs and limitations.
In the end, I semi stopped crying, thanked Dr. L over and over, and gave her the flowers that I had dug up from my garden and put into a pot. At first I had made a bouquet from cut flowers, but it wasn't very pretty and looked like it would be messy. Plus, I wanted something that would keep living, not slowly fall to pieces and leave sad-looking flower skeletons in a vase of algae-filled water on her desk. Yes, you can read into that. There is some symbolism here. She was extremely appreciative. Then the nurse navigator came to say goodbye to me and I started crying all over again. You'd have thought I was just told that I was in Stage IV. It is amazing how much a doctor can impact you - good or bad. Of course, I am sorry that I had to know Dr. L at all, but I will forever be so grateful for the care that she provided for me, and for her absolute, genuine compassion. It has truly been a blessing.
Dr. L was her usual wonderful self, and put me at ease right away. And fortunately, she brought up the fact that I had gone to see a different surgeon up at UH without me having to. I mean, I knew she probably knew, because she is actually part of the university health system, so she is on the same patient portal as the folks at UH. When she asked me about the appointment, I told her I had found a plastic surgeon who was going to do my reconstruction. I quickly added that I was very sad, because I really wanted her to do my mastectomy. She totally understood, though, and as it turns out, I was right. The DIEP flap reconstruction I'm choosing isn't possible in my town because it is so complex and requires a team of surgeons working very closely with each other, and we do not have a major medical center where this type of thing happens. So the choice is not a hard one. She said the only flap reconstruction that the plastic surgeon she works with does is a TRAM flap reconstruction, which is much simpler, but removes your transverse abdominis muscle. She agreed that at my age, a TRAM flap reconstruction isn't the best option because of the long-term effects/risks of losing your abdominal muscle.
She did express surprise that I had enough tissue for a DIEP flap, though. I said Dr. T was going to have to use tissue from both sides, which Dr. Google told me is called a stacked DIEP flap reconstruction, and is considered even more specialized than a plain old DIEP reconstruction. Then I added that Dr. T said I might need a fat transplant later, and he could take fat from my thighs, which I was pretty psyched about. LOL. She asked if we had considered using my butt, and I said that my husband liked my butt the way it was. Then she made a funny face and admitted, 'I'd feel weird having part of my butt on my chest.' Ha! She did say that taking fat from the thighs and injecting it into a reconstructed breast gave very nice results, and that this was a good option for me. Then she joked that I'd be looking like Barbie in no time.
She inquired about the possibility of sparing my nipple or maybe just the areola, and I told her I couldn't remember the details about why this would make the reconstruction more difficult. But I think I will e-mail Dr. T for clarification now. Dr. L said that nipple reconstruction never worked out very well, but whether or not having a nipple matters 'depends on how nipple-y you want to be.' Ha ha, yes, she really did use that term. Nipple-y. Seriously, I've thought a lot about this while on vacation, and spent a creepy amount of time looking at women's breasts, and nipples, and found my eyes wandering to Dr. L's breasts as we were having the conversation. No perky nipples. I told her the thing about nipples is that I don't want to be 'nipple-y'; in fact, I'd be more inclined to want my other nipple cut off so I just don't have to worry about them at all. I was surprised when she said some women actually do this because they don't want nipple reconstruction, but 'It is weird to have one nipple out there (THO, or titty hard on, as my friend from high school used to call it) and the other one gone.' This is what I love about Dr. L. She has a very buoyant personality, but yet she doesn't sugar coat things. She is the perfect combination of positive and realistic; light-hearted and serious. It might seem trivial to be thinking about nipple weirdness in the midst of a potentially life-threatening condition, but I've noticed that even terminal cancer patients mourn losing breasts, losing their fertility, and things that seem small when you are likely going to die within a year. Perhaps this is how we maintain a sense of normalcy, a sense of ourselves.
There is something comedic about the conversations that revolve around breast reconstruction, but maybe that is a testament to the conflicting messages women get about their breasts. It is funny and yet not funny at all. In the end, Dr. L said she thought I was making a good decision, and said that if she were me, she would do exactly what I'm doing. Her endorsement meant a lot, simply because I have such a great deal of respect for her. So I reacted appropriately and burst out crying (and unfortunately I'm not kidding).
From there on out, I think it was more of a therapy session than anything. We mostly talked through some of my emotions while she hugged me and I cried. She said she was honestly surprised that some women could come to her and so easily ask her to cut their breasts off, without a second thought, and said she felt like I had 'an appropriate amount of sadness.' And even though I'm having the mastectomy done at UH, I can still call her for anything; I'm forever a part of her 'team,' and We will get you through this. She said if I need any post-mastectomy care that is not worth driving up to UH for, she is happy to provide it - like, 'when you need your drains removed.' I made a face, thinking about the reality of it all. Apparently the drains you have in you after a mastectomy are pretty much The Grossest Thing Ever. Dr. L responded to my face and said, 'Yeah, the drains are pretty gross.' Ugh.
Toward the end, I told Dr. L the hard thing about cancer was that doctors who did oncology stuff were so amazing, top-notch. She replied that was a good thing, no? I said it was going to be really hard for me from here on out to find doctors who could live up to my standards. I think she appreciated that. Then we joked about different types of doctors, swapped information about a few, and she agreed with me that in general, orthopedists are THE WORST. I said I was certain that after all this, I would never ever be able to find an orthopedist who was even close to acceptable. Then I added somewhat jokingly that I was tempted, since the mastectomy will surely bring us up to our out-of-pocket maximum for health care, to have my hip reconstructed before the end of the year. I'm not really seriously thinking about this, just because it would be way too much trauma for one year, both emotional and physical. Based on the pain from the lumpectomy, I'm guessing the pain from the mastectomy would make being on crutches pretty impossible. Dr. L said that of course I needed to take care of the cancer first, but also empathized with how difficult chronic pain is.
Eventually she brought me some information about various cancer resources - therapists, support groups, and whatnot. A few of them actually look useful. One thing that looks interesting is that the hospital offers yoga classes every other Monday night for cancer patients, which I am interested in trying to attend. I feel like my body has sort of gone to hell over the past year, especially since losing my ability to do my favorite type of exercise, which is going on walks. I really want/need to do something physical, and yoga might help with my stress as well. At the same, going into a yoga class with seasoned yoga-goers (with fresh, perky boobs in tight, nipple-revealing yoga get-ups) seems somewhat stressful right now. A friend and I had discussed going to yoga together, but now with all of this, I don't see it happening soon. But yoga with other suffering people might not be so bad. LOL. And as Dr. L pointed out, the yoga instructor is an oncology social worker with an understanding of people's needs and limitations.
In the end, I semi stopped crying, thanked Dr. L over and over, and gave her the flowers that I had dug up from my garden and put into a pot. At first I had made a bouquet from cut flowers, but it wasn't very pretty and looked like it would be messy. Plus, I wanted something that would keep living, not slowly fall to pieces and leave sad-looking flower skeletons in a vase of algae-filled water on her desk. Yes, you can read into that. There is some symbolism here. She was extremely appreciative. Then the nurse navigator came to say goodbye to me and I started crying all over again. You'd have thought I was just told that I was in Stage IV. It is amazing how much a doctor can impact you - good or bad. Of course, I am sorry that I had to know Dr. L at all, but I will forever be so grateful for the care that she provided for me, and for her absolute, genuine compassion. It has truly been a blessing.
Wednesday, July 15, 2015
An Answer to My Prayers
Finally, a happy post.
I am so, so happy right now. Like really seriously happy, not just happy in a 'happier than I have been in two months' happy (though that, too).
My consult up at University Hospital was amazing. A-M-A-Z-I-N-G.
It started off just sort of eh, whatever, with a surgical resident being the first person we saw. She asked if this was a second opinion consult and I said I actually didn't want to treat it that way; I was seriously considering having the surgery done at UH. Ultimately I think it was a good thing I made that clear because I think it may have changed how the rest of the appointment unfolded. The resident then proceeded to take a decent history and started to discuss options, when Dr. F, the surgical oncologist, came in. She was fine, but certainly no Dr. L. Interestingly, she did mention that doing a second re-excision was an option, even though I've moved past that in my mind. Before I left on vacation, I would have loved to hear that, and cling to it as a reasonable option, but I realize now it's not the best option. Choosing this would be a decision based on emotion and fear, not logic. In the end, Dr. F said she would only recommend it if it were really, really important to me to try to conserve my breast. The obvious downsides to this would be that there is absolutely no guarantee I'd have clean margins afterward, and even if I did, I would still need radiation, and my breast would end up somewhat deformed. She said unfortunately the margins that would need the most re-excision were on opposite ends, and I'd end up with a large dimple in my breast that would pull my nipple outward. However, things would remain normal in the center - 'Your cleavage would be the same.' LOL! Seriously, I don't even wear bathing suits that show cleavage, so that SO doesn't matter to me. I told her I had moved beyond that in my mind, and wanted to discuss mastectomy with reconstruction options. She asked if I had met with a plastic surgeon yet, because the plastic surgeon is really the most important person in this process, and the person who could answer my questions. I said I hadn't, so she said she would see if she could arrange to have one of their plastic surgeons come down and talk to me, which turned out to be an awesome thing. I was hoping, hoping, HOPING I'd be able to see a plastic surgeon, or that at least with this consult I would have an 'in' to get to see one faster. As it turned out, Dr. F called over to plastic surgery and said one of the surgeons, Dr. T, could come over in 15-20 minutes.
While on vacation, I did a fair amount of Google-stalking of the plastic surgeons available to me. The one Dr. L works with has impressive credentials, but I was sort of turned off by his web site, which focuses mostly on cosmetic surgeries. Going into this, I was very biased toward the UH plastic surgeons, because it seems that their focus is mostly on reconstructive surgery following cancer, amputation, and bad accidents, and less on tummy tucks and lip implants. I remembered reading about Dr. T on the web site, and was happy to get a chance to meet him without even having to make an appointment. What great luck!
After about 20 minutes, there was a knock on the door, and a young guy who was clearly not Dr. T came in. I only knew this for sure because Dr. T, based on his name, is clearly Asian, and this guy was not clearly Asian (though it turns out he is actually half Japanese). It was actually a third-year medical student doing a surgery rotation. We talked a bit, and he was an interesting guy, although his interview skills needed some work. (I should have suggested that he take an EMT class to learn how to effectively take a patient history. LOL.) He just recently finished a Ph.D. in organic chemistry, then decided to go to med school, and I feel like we ended up talking more about him than me, but that's okay. In the end, I think he regretted coming in so early, though, because it was probably another 20 minutes before Dr. T came in, and there were some awkward silences, one of which he filled by saying, 'Hopefully Dr. T will be here soon.' Oh the joys of the teaching hospital!
Finally Dr. T came in and it was pretty much love at first sight. I honestly wasn't sure what to expect because I've never met a plastic surgeon before. Also, I mentioned that he was very clearly Asian from his name, so I didn't know if he was going to be Asian Asian or Asian-American Asian. It turns out it was the latter, so I didn't have to worry about this being a brilliant-surgeon-I-can't-understand type. Dr. T was Amazing with a capital A. Capital everything, actually. Like I said before: A-M-A-Z-I-N-G.
He started off by discussing my medical history with me, though he had clearly already read up on me beforehand. (This is actually one of the really impressive things about UH; everyone I've seen there, even the med students and residents, have reviewed my history fairly thoroughly before they come in the room.) We briefly discussed my overall health, my hips and DVT, my kids, his kids, my job, and the fact that he had just moved here from Texas. However, he and his wife are actually from Virginia originally, so 'I'm not one of those Texans.' LOL. One of his colleagues in Texas was offered the position of Chief of Plastic Surgery at UH, then later offered him a position. Since his wife hates humidity, she had been hoping to leave Texas, and was thrilled. Also, like me, his wife was adopted. She's from Korea, but like me, is Asian American only in appearance, but otherwise American American (whatever that means). Dr. T, who is apparently Korean American, said he had always dated 'Americans' and his wife was the first 'Korean' he had ever dated, and his parents were excited he was finally dating a 'Korean girl.' He had to explain to them that she wasn't really Korean, but even so, they would speak Korean to her, and 'I had to keep telling them, She can't understand you!' Hahahaha!
Eventually, we got down to business and he said, 'So, if you are educated, which I know you are, because you are...' In that brief blip, I was trying to predict what he was going to say. I know you are educated because... Because I teach at a university? Because I'm Asian? LOL. Instead, he said, '... because you are a breast cancer patient.' He then went on to say that in his experience, all breast cancer patients were extremely educated about breast cancer and always knew exactly what they wanted. Then he said, 'So tell me what you want.'
It was that easy. I didn't have sit there and listen to him talk about implants and pros and cons and blah blah blah. I just said I wanted to do a mastectomy with flap reconstruction, and waited for him to tell me I wasn't big enough. He did ask why I didn't want implants, and I just shuddered, and apparently that was good enough for him. Then he gave me a good, long look for what seemed like ages (probably 2-3 seconds in reality), then said, 'You don't have a lot to work with.' (Insert le panicked sigh here.) But then, 'But I've done flap reconstruction on a woman your size... I can do it.' (glee!) I can do it. I told him I had read about the options, and knew there were various places from which the 'flap' could come, and 'I am sure I have a B-cup of fat somewhere on my body.' He said, 'If all you want is a B-cup, we can definitely do it.' (Ummmm, yes, I'm not exactly looking for augmentation in the face of a mastectomy.' LOL.) But those magic words, we can definitely do it, were amazing to hear. There was no hemming and hawing or Hmmmm, well, maybe I can do this or that, or Are you sure you don't want to consider an implant? Just a very simple and confident, I can do it. We can definitely do it. And it was confident in the right way; not an overly-confident, sleazy I can do anything you want me to for your business type of way, but an I understand this is really important to you and will figure out how to do it type of way. There is, of course, the unspoken understanding of this being the difficult route, but he didn't need to tell me that because he knew that I already know that.
So then he started the physical exam, which had the potential to be extremely humiliating, but was not at all. I felt as dignified as one can standing half-naked in a room with a male medical student (Dr. T did ask if it was okay with me if he stayed) and a male plastic surgeon pinching all of my fat, on all of my body parts that were potential sites for fat donation. He even had me stand facing my husband so my husband could verify that he wasn't being inappropriate, ha ha. He started with my abdomen, which despite my best efforts to expand over vacation, is still not very big. At one point, he sort of frowned and said, 'You really don't have a lot of fat here.' I started to get nervous, thinking he was going to change his mind, and pointed out that my thighs were fat. He said thighs were a viable option, then starting pinching my thighs. Then I added, 'Or my butt. How about my butt?' So I lay down on my stomach, and he examined my butt and said my butt would work, at which point my husband said, 'I like her butt.' So Dr. T said, 'Your husband likes your butt, so that's out.' OMG LOL. Seriously.
After much poking and prodding, Dr. T had me stand up, then he looked me in the eye and said, 'Here's the thing...' I braced myself, thinking he was going to change his mind. He continued, 'You don't have a lot of fat.' Pregnant pause. 'I can do this; I can figure it out, if you are willing to let me figure it out. I promise you I can figure out a way to make it work.' I promise you I can figure out a way to make it work. Then he looked at me, as if asking for my approval. I smiled and told him that was exactly what I wanted to hear. At this point, the fact that he understood that I was 'well educated' meant a lot, because he knew that I knew that this was not going to be easy, and maybe even that I knew it would take a 'special' surgeon to do what I wanted, and that I was okay with him having to 'figure it out.' Going into this, I wanted a surgeon who would be okay with my desire to not have implants, who could work with the fat that I have to give me a breast that is not saline or silicone, however small. I am okay with the fact that he hasn't done a lot of flap reconstruction on women my size, because quite frankly, in this day and age, most women are not my size, so there are very few surgeons who have extensive experience with it. What is more important is his surgical skills in general, and willingness to work with me.
Dr. T did mention at one point, 'You know, implants are safe.' He went on to explain some data, then said, 'If my daughter needed this, I would let her have implants.' I took note of the fact that he said let, not recommend. Then he added, 'But I completely understand why you don't want implants.' And that was that. Perhaps this was just due diligence, because he didn't push it any more. OMGILOVETHISGUY.
Also, at some point during the exam, he told me that it was extremely important for people to feel comfortable with their plastic surgeon, and that he always told people that if there was anything at all about their surgeon that made them uncomfortable, that they should move on immediately and without question. After saying this, he looked somewhat expectantly at both me and my husband, as if asking if we were comfortable and okay with everything. I didn't quite know what to say, but then my husband gave a little chuckle and declared, 'I'm having fun!' And... it was fun. Sort of. Obviously it was not fun in that 'vacation on the beach' sort of fun, but it was 'fun' in that it was not at all traumatic, and what could have potentially been the most humiliating and degrading experience of my entire life, at a point when I'm already feeling like I'm at rock bottom, was the complete opposite. I never felt embarrassed or degraded; it was all the right combination of light-heartedness and seriousness. We laughed and joked, but never to the extent that we lost sight of the fact that this is some weighty stuff. While I'm trying to wrap my mind around one of the most traumatic experiences of my life, I'm also joking about how all the beer I drank on vacation went to my thighs instead of my gut. Reality + sense of humor = totally my style.
Other random tidbits from our visit, because I cannot organize them into any coherent fashion:
I am so very, very, VERY grateful for this unexpected blessing.
I am so, so happy right now. Like really seriously happy, not just happy in a 'happier than I have been in two months' happy (though that, too).
My consult up at University Hospital was amazing. A-M-A-Z-I-N-G.
It started off just sort of eh, whatever, with a surgical resident being the first person we saw. She asked if this was a second opinion consult and I said I actually didn't want to treat it that way; I was seriously considering having the surgery done at UH. Ultimately I think it was a good thing I made that clear because I think it may have changed how the rest of the appointment unfolded. The resident then proceeded to take a decent history and started to discuss options, when Dr. F, the surgical oncologist, came in. She was fine, but certainly no Dr. L. Interestingly, she did mention that doing a second re-excision was an option, even though I've moved past that in my mind. Before I left on vacation, I would have loved to hear that, and cling to it as a reasonable option, but I realize now it's not the best option. Choosing this would be a decision based on emotion and fear, not logic. In the end, Dr. F said she would only recommend it if it were really, really important to me to try to conserve my breast. The obvious downsides to this would be that there is absolutely no guarantee I'd have clean margins afterward, and even if I did, I would still need radiation, and my breast would end up somewhat deformed. She said unfortunately the margins that would need the most re-excision were on opposite ends, and I'd end up with a large dimple in my breast that would pull my nipple outward. However, things would remain normal in the center - 'Your cleavage would be the same.' LOL! Seriously, I don't even wear bathing suits that show cleavage, so that SO doesn't matter to me. I told her I had moved beyond that in my mind, and wanted to discuss mastectomy with reconstruction options. She asked if I had met with a plastic surgeon yet, because the plastic surgeon is really the most important person in this process, and the person who could answer my questions. I said I hadn't, so she said she would see if she could arrange to have one of their plastic surgeons come down and talk to me, which turned out to be an awesome thing. I was hoping, hoping, HOPING I'd be able to see a plastic surgeon, or that at least with this consult I would have an 'in' to get to see one faster. As it turned out, Dr. F called over to plastic surgery and said one of the surgeons, Dr. T, could come over in 15-20 minutes.
While on vacation, I did a fair amount of Google-stalking of the plastic surgeons available to me. The one Dr. L works with has impressive credentials, but I was sort of turned off by his web site, which focuses mostly on cosmetic surgeries. Going into this, I was very biased toward the UH plastic surgeons, because it seems that their focus is mostly on reconstructive surgery following cancer, amputation, and bad accidents, and less on tummy tucks and lip implants. I remembered reading about Dr. T on the web site, and was happy to get a chance to meet him without even having to make an appointment. What great luck!
After about 20 minutes, there was a knock on the door, and a young guy who was clearly not Dr. T came in. I only knew this for sure because Dr. T, based on his name, is clearly Asian, and this guy was not clearly Asian (though it turns out he is actually half Japanese). It was actually a third-year medical student doing a surgery rotation. We talked a bit, and he was an interesting guy, although his interview skills needed some work. (I should have suggested that he take an EMT class to learn how to effectively take a patient history. LOL.) He just recently finished a Ph.D. in organic chemistry, then decided to go to med school, and I feel like we ended up talking more about him than me, but that's okay. In the end, I think he regretted coming in so early, though, because it was probably another 20 minutes before Dr. T came in, and there were some awkward silences, one of which he filled by saying, 'Hopefully Dr. T will be here soon.' Oh the joys of the teaching hospital!
Finally Dr. T came in and it was pretty much love at first sight. I honestly wasn't sure what to expect because I've never met a plastic surgeon before. Also, I mentioned that he was very clearly Asian from his name, so I didn't know if he was going to be Asian Asian or Asian-American Asian. It turns out it was the latter, so I didn't have to worry about this being a brilliant-surgeon-I-can't-understand type. Dr. T was Amazing with a capital A. Capital everything, actually. Like I said before: A-M-A-Z-I-N-G.
He started off by discussing my medical history with me, though he had clearly already read up on me beforehand. (This is actually one of the really impressive things about UH; everyone I've seen there, even the med students and residents, have reviewed my history fairly thoroughly before they come in the room.) We briefly discussed my overall health, my hips and DVT, my kids, his kids, my job, and the fact that he had just moved here from Texas. However, he and his wife are actually from Virginia originally, so 'I'm not one of those Texans.' LOL. One of his colleagues in Texas was offered the position of Chief of Plastic Surgery at UH, then later offered him a position. Since his wife hates humidity, she had been hoping to leave Texas, and was thrilled. Also, like me, his wife was adopted. She's from Korea, but like me, is Asian American only in appearance, but otherwise American American (whatever that means). Dr. T, who is apparently Korean American, said he had always dated 'Americans' and his wife was the first 'Korean' he had ever dated, and his parents were excited he was finally dating a 'Korean girl.' He had to explain to them that she wasn't really Korean, but even so, they would speak Korean to her, and 'I had to keep telling them, She can't understand you!' Hahahaha!
Eventually, we got down to business and he said, 'So, if you are educated, which I know you are, because you are...' In that brief blip, I was trying to predict what he was going to say. I know you are educated because... Because I teach at a university? Because I'm Asian? LOL. Instead, he said, '... because you are a breast cancer patient.' He then went on to say that in his experience, all breast cancer patients were extremely educated about breast cancer and always knew exactly what they wanted. Then he said, 'So tell me what you want.'
It was that easy. I didn't have sit there and listen to him talk about implants and pros and cons and blah blah blah. I just said I wanted to do a mastectomy with flap reconstruction, and waited for him to tell me I wasn't big enough. He did ask why I didn't want implants, and I just shuddered, and apparently that was good enough for him. Then he gave me a good, long look for what seemed like ages (probably 2-3 seconds in reality), then said, 'You don't have a lot to work with.' (Insert le panicked sigh here.) But then, 'But I've done flap reconstruction on a woman your size... I can do it.' (glee!) I can do it. I told him I had read about the options, and knew there were various places from which the 'flap' could come, and 'I am sure I have a B-cup of fat somewhere on my body.' He said, 'If all you want is a B-cup, we can definitely do it.' (Ummmm, yes, I'm not exactly looking for augmentation in the face of a mastectomy.' LOL.) But those magic words, we can definitely do it, were amazing to hear. There was no hemming and hawing or Hmmmm, well, maybe I can do this or that, or Are you sure you don't want to consider an implant? Just a very simple and confident, I can do it. We can definitely do it. And it was confident in the right way; not an overly-confident, sleazy I can do anything you want me to for your business type of way, but an I understand this is really important to you and will figure out how to do it type of way. There is, of course, the unspoken understanding of this being the difficult route, but he didn't need to tell me that because he knew that I already know that.
So then he started the physical exam, which had the potential to be extremely humiliating, but was not at all. I felt as dignified as one can standing half-naked in a room with a male medical student (Dr. T did ask if it was okay with me if he stayed) and a male plastic surgeon pinching all of my fat, on all of my body parts that were potential sites for fat donation. He even had me stand facing my husband so my husband could verify that he wasn't being inappropriate, ha ha. He started with my abdomen, which despite my best efforts to expand over vacation, is still not very big. At one point, he sort of frowned and said, 'You really don't have a lot of fat here.' I started to get nervous, thinking he was going to change his mind, and pointed out that my thighs were fat. He said thighs were a viable option, then starting pinching my thighs. Then I added, 'Or my butt. How about my butt?' So I lay down on my stomach, and he examined my butt and said my butt would work, at which point my husband said, 'I like her butt.' So Dr. T said, 'Your husband likes your butt, so that's out.' OMG LOL. Seriously.
After much poking and prodding, Dr. T had me stand up, then he looked me in the eye and said, 'Here's the thing...' I braced myself, thinking he was going to change his mind. He continued, 'You don't have a lot of fat.' Pregnant pause. 'I can do this; I can figure it out, if you are willing to let me figure it out. I promise you I can figure out a way to make it work.' I promise you I can figure out a way to make it work. Then he looked at me, as if asking for my approval. I smiled and told him that was exactly what I wanted to hear. At this point, the fact that he understood that I was 'well educated' meant a lot, because he knew that I knew that this was not going to be easy, and maybe even that I knew it would take a 'special' surgeon to do what I wanted, and that I was okay with him having to 'figure it out.' Going into this, I wanted a surgeon who would be okay with my desire to not have implants, who could work with the fat that I have to give me a breast that is not saline or silicone, however small. I am okay with the fact that he hasn't done a lot of flap reconstruction on women my size, because quite frankly, in this day and age, most women are not my size, so there are very few surgeons who have extensive experience with it. What is more important is his surgical skills in general, and willingness to work with me.
Dr. T did mention at one point, 'You know, implants are safe.' He went on to explain some data, then said, 'If my daughter needed this, I would let her have implants.' I took note of the fact that he said let, not recommend. Then he added, 'But I completely understand why you don't want implants.' And that was that. Perhaps this was just due diligence, because he didn't push it any more. OMGILOVETHISGUY.
Also, at some point during the exam, he told me that it was extremely important for people to feel comfortable with their plastic surgeon, and that he always told people that if there was anything at all about their surgeon that made them uncomfortable, that they should move on immediately and without question. After saying this, he looked somewhat expectantly at both me and my husband, as if asking if we were comfortable and okay with everything. I didn't quite know what to say, but then my husband gave a little chuckle and declared, 'I'm having fun!' And... it was fun. Sort of. Obviously it was not fun in that 'vacation on the beach' sort of fun, but it was 'fun' in that it was not at all traumatic, and what could have potentially been the most humiliating and degrading experience of my entire life, at a point when I'm already feeling like I'm at rock bottom, was the complete opposite. I never felt embarrassed or degraded; it was all the right combination of light-heartedness and seriousness. We laughed and joked, but never to the extent that we lost sight of the fact that this is some weighty stuff. While I'm trying to wrap my mind around one of the most traumatic experiences of my life, I'm also joking about how all the beer I drank on vacation went to my thighs instead of my gut. Reality + sense of humor = totally my style.
Other random tidbits from our visit, because I cannot organize them into any coherent fashion:
- Dr. T agreed to do a surgery where he takes all of the fat from my abdomen to try to recreate a breast for me. He was not certain this would be 'enough,' but offered, 'If it isn't enough, and you can't live with it, I can do a liposuction and a fat transplant from your thighs.' This would be approximately three months post-mastectomy. Although my thighs have more fat, and he could use a thigh to make a 'flap' during the original surgery, this would involve taking a muscle (the gracilis), and then I would have one fat thigh and one skinny one (and be missing a muscle, which is not trivial).
- At one point, when Dr. T was squeezing my love handles, he declared, 'This is what it is like to be a plastic surgeon in Asia!' I didn't quite get what he meant, but then he went on say that in Asia, I'd be 'normal,' and not a I need a special plastic surgeon to do my reconstruction type.
- He mentioned that this is a complex surgery, and will take 6-8 hours, although he has done it in as little as 5. I assured him I did not want him to rush. I think this is one of those things where I'm supposed to act aghast and be like HOLY SHIT! EIGHT HOURS! but he already knew that I knew this, so it wasn't an issue. Then he said that because it was a complex surgery, he would need an additional surgeon, and that he would request that his colleague, who was the Chief of Plastic Surgery, perform the surgery with him. Then, as if I needed convincing that this was okay, he added, 'If I were having surgery, I'd want the Chief of Plastic Surgery at UH operating on me. He's really good.' Pause. Then he added, 'And I'm pretty good, too.' And the latter was so perfect, so full of the right combination of moxy, joking, and seriousness that it lifted my spirits and truly made me feel like this is going to be okay.
- We had a frank discussion about my nipple and nipple-conserving mastectomy. He said that technically I would be having a prophylactic mastectomy, and that I was a candidate for a 'nipple-sparing' procedure. However, sparing my nipple would make the reconstruction more difficult, and he followed this with a bunch of technical details about which I had not actually educated myself. He made it clear that he was willing to work around my nipple if doing so was important to me, but if not, he could also do nipple reconstruction later, if I wanted. In the end, I told him that the overall reconstruction was more important to me than my nipple, so if my nipple had to be sacrificed for the greater good, so be it. To which he responded, 'This is going to be easy. You are so reasonable.'
- Dr. T talked to me about the scars I will have from all of this. They will be ugly, but I'm okay with that. He mentioned that I'll have a scar from one hip to the other, but that it should be below my bikini line, and I assured him I don't care about that; I am too old for bikinis. He will also have to cut my belly button out and re-attach it, so there will be a scar all the way around it. (This stuff is not for the faint of heart.) Then he said that he was very good at minimizing scarring, and actually spent a good deal of time fixing scars that other surgeons left.
- Dr. T said that he was going to treat this as a cosmetic surgery as much as a reconstruction. When he said this, I think I looked at him with surprise, not really understanding what he meant. Then he said, 'You have a really nice figure. At your age, and after two kids, you look great. We should preserve that.' Honestly... in retrospect, that meant a lot. He didn't say it in a creepy or inappropriate way, just very matter-of-fact. I've never thought of myself as a super vain type, but... I love how I look. Basically, I love everything about my life except for my stupid cancer and stupid hips, and I would love to preserve my good looks, if possible. I mean, in my adult life, I've never really given serious consideration to being 'good looking,' especially since I've been happily married for 15 years. If I have to be deformed and scarred and gross to keep living this awesome life, so be it, but at the same time, if I have a surgeon who wants to save my life and my figure at the same time, then praise God.
- Dr. T then said that if I was unhappy with a result, to give him a year before I was angry with him, because this was lengthy process, and he would need a full year post-mastectomy to make everything right. This will involve follow-ups and probably revision surgery. His words: 'If you're angry with me about something, I'd ask that you not be angry until after a year. This is at least a year-long process.'
- I asked him, after all of this, what options there would be should I end up having cancer in my right breast, and needing a reconstruction. He said, 'I have a surgery for that,' followed by some details. 'It can be done.' But then he suggested that we not get too far ahead of ourselves, that we take care of what's trying to kill you right now.
- In the end he asked if it was okay if he took some pictures of me, so that he and his colleague could make a plan. He promised me my face was not in the photo and that he would not post them on Facebook. He took the pictures with his cell phone, which was okay with me, because:
- He gave me his e-mail, and personal cell phone number. He said: 'I'm not giving you my cell phone number because you are special; I give it to all of my cancer patients.' Then he added, with a twinkle in his eye, 'But you are special.' LOL. He said the university didn't like it if they gave out their e-mails and cell numbers, so they wouldn't print these on their business cards, but then said, with a shrug and roll of his eyes, that this was what he preferred - that I could e-mail him, call him, or text him at any time. Then he said, 'But I do surgery almost every day, so please understand it might be up to 24 hours before I respond.' SERIOUSLY?! Somebody pinch me, this has to be a dream! WTF? Seriously. I have to be dreaming.
I am so very, very, VERY grateful for this unexpected blessing.
Tuesday, July 14, 2015
Options and Prayers
My parents left for France today. It's sort of weird, but sort of a relief, just because I've got a shit ton of emotions pouring out of me right now, and as I've mentioned before, for some reason, my parents make all of this more difficult to deal with. When I think about it logically, I realize it's because I think this might actually be harder for them than it is for me, and they are not handling it well. And their not handling it well makes it really difficult for me to handle it well. It's sort of hard for me to imagine that they might return to a one-breasted daughter, but in all fairness, I was supposed to be starting radiation right now, not having a mastectomy, and they did wait until they were sure I was not terminal before going forward with their plans. So there you go.
Anyway, I am going up to University Hospital for a consultation tomorrow. I scheduled this a long time ago, right after I discovered I had positive margins from surgery #2, before I met with Dr. J and Dr. M, and seriously thought a second re-excision was a viable option for me. I even posted on the breastcancer.org forum, asking anyone who had had two re-excisions for their thoughts, and got absolutely no response. So this is not something that actually happens in real life. What was that movie in the '90s? With Winona Ryder? Something like Reality Sucks? Or maybe Reality Bites? Yes, I think that's it.
Regardless, I'm actually happy to have this appointment because I am seriously considering the possibility of having my mastectomy with reconstruction at UH. Based on my intense Googling and ferocious blog reading with on vacation, I've pretty much decided that I absolutely do not want an implant. Traditional reconstruction options after a mastectomy are done with an implant - either a saline implant or a silicone implant. This involves a painful process wherein a tissue expander is placed under your pectoralis muscle at the time of mastectomy and, over several months, injected with solution to stretch your chest. Later, another surgery is required for the 'permanent' implant, which is only 'permanent' for, like, 10 years, assuming it doesn't leak, in which case you need to have it replaced right away. It is this a painful process requiring several surgeries, as well as ongoing care of the implant. While I understand this works for many, it is not for me. It just isn't.
This leaves me contemplating the following options:
Anyway, I am going up to University Hospital for a consultation tomorrow. I scheduled this a long time ago, right after I discovered I had positive margins from surgery #2, before I met with Dr. J and Dr. M, and seriously thought a second re-excision was a viable option for me. I even posted on the breastcancer.org forum, asking anyone who had had two re-excisions for their thoughts, and got absolutely no response. So this is not something that actually happens in real life. What was that movie in the '90s? With Winona Ryder? Something like Reality Sucks? Or maybe Reality Bites? Yes, I think that's it.
Regardless, I'm actually happy to have this appointment because I am seriously considering the possibility of having my mastectomy with reconstruction at UH. Based on my intense Googling and ferocious blog reading with on vacation, I've pretty much decided that I absolutely do not want an implant. Traditional reconstruction options after a mastectomy are done with an implant - either a saline implant or a silicone implant. This involves a painful process wherein a tissue expander is placed under your pectoralis muscle at the time of mastectomy and, over several months, injected with solution to stretch your chest. Later, another surgery is required for the 'permanent' implant, which is only 'permanent' for, like, 10 years, assuming it doesn't leak, in which case you need to have it replaced right away. It is this a painful process requiring several surgeries, as well as ongoing care of the implant. While I understand this works for many, it is not for me. It just isn't.
This leaves me contemplating the following options:
- Single mastectomy without reconstruction. The advantages to this are that it would be a relatively easy recovery, and I would probably be able to teach in the fall. The disadvantages are that I would feel like a uniboob FREAK, and unbalanced (both literally and figuratively). It's just hard for me to imagine not being able to get up in the morning and go about my business without feeling like I need to first don my prosthetic boob. I already can't function without putting in contacts in the morning. I have 20/900 vision and a small nose, so glasses with one-inch thick lenses and I don't get along very well, so it's daunting to think about adding a strap-on to my morning ritual. Maybe this is trivial and maybe I will change how I feel about this eventually, but this is what I'm feeling right now.
- Double mastectomy without reconstruction. The advantages to this are that I would be more balanced and probably more at ease. Despite the fact that there is no scientific or medical reason to think that I have breast cancer lurking in my right breast, I cannot help but feel this is the case. Even though I think it might be weird to be completely breastless, I think in some ways this might be easier for me than having a single breast. On a practical level, it would certainly be easier. On the other hand, I don't know how I feel about amputating a healthy breast, and the pain that goes along with it. I've written about this here. Emotionally, parting with two breasts seems like double the trauma as parting with just one. Also, none of the doctors I have met with have counseled me to have a double mastectomy, so I am not sure how it would work if I decided that was the route I wanted to go.
- Single mastectomy with flap reconstruction. Flap reconstruction uses fat from your own body to create a new breast. There are different forms of flap reconstruction; from what I gather, the fat can come from a number of different places. The most 'current' form of reconstruction is DIEP flap reconstruction (do not click on the link if you are squeamish about this sort of thing), which uses fat from your abdomen to create a new breast. The advantages to this are that you do not have an implant, your new breast is 'natural,' and you get to have fat removed from another part of your body. (Who doesn't want this?) The obvious disadvantage is that this is a complex surgery with a pretty horrendous recovery, and the outcome depends on the skill of surgeon. I mean, duh, that's always the case, but with this surgery, it's really, really important to have a good surgeon who is experienced in doing this surgery. It is a lot more complex than traditional reconstruction with an implant, and also involves several steps.
After much reflection, #3 is my definite top choice. I have been praying this will be an option for me. I know that UH does this procedure, but I am not sure if I can have it done locally. As much as I love Dr. L, if the plastic surgeon she works with can't do this, I need to consider the possibility of doing it elsewhere. Unfortunately, it obviously involves a rather lengthy hospital stay, so having it done at UH, or an even more distant location, would present logistical challenges, but I feel like it would be worth it in the long-term. The other question mark is that I do not have a lot of abdominal fat. It is ironic; for my whole life, I've been blessed with a really flat abdominal region. As I've grown older, I've lamented that I'm starting to get somewhat of a gut, but now, I really, really wish I had a bigger one. (I actually TRIED to gain weight over vacation just so it would increase my chances of being a candidate for this surgery.) The thing is that I am not a super thin person; I am pretty average. It's just that I tend to accumulate fat in my thighs and butt rather than my abdomen. However, apparently these are also candidates for fat donations, especially the buttocks, so I feel like I really need to consider all of my options in terms of where I could possibly have this surgery done, no matter how inconvenient it might be. I don't have huge breasts, and like I said, I'm not a skinny person. I know that I have a B-cup's worth of fat somewhere in my body; I just need a surgeon who will understand how much I DO NOT want an implant, and work with me. I pray I can find one.
So here are my prayers for tonight:
Blessings
- I'm thankful to have the opportunity for an appointment at a place that offers cutting-edge care.
- I'm thankful my husband is going to accompany me to the appointment, because driving stresses me out, especially in places with which I'm not super familiar.
- I'm thankful my friend and colleague (about whom I wrote in my last post) is going to watch my daughter early tomorrow morning, and then take her and pick her up from theater camp, so she doesn't have to miss it.
- I'm thankful the university daycare has drop-in space for my son so that I can have a conversation with the surgeon without a three-year-old in the room, and also have my husband with me. It's like having your cake and eating it, too. :)
Hopes
- I hope the appointment is informative, and worth our time. I hope I leave knowing much more than I do now.
- I pray with all my heart the surgeon will tell me that I am a candidate for flap reconstruction.
And now, I am off to take an Ambien. I took one last night, and got six solid hours of sleep, and ohmygosh, it was divine. I am already feeling so much better today than I was a few days ago. I am hoping with all my heart for continued improvement.
Monday, July 13, 2015
Even the best type of cancer really sucks.
I've written before that I have a ridiculously low tolerance for stress. Seriously, I should probably be on some sort of anti-anxiety medication, but I hate taking medication (it stresses me out) and I also hate going to the doctor (it stresses me out), so these latter two points pretty much make the former impossible. And anyway, even if I went to the doctor and got a prescription for a chill pill, I probably wouldn't take it as I should, seeing as how I haven't even been able to take Vitamin D regularly despite knowing that I'm severely deficient. But that's not what I came here to write about. I actually came here to write simply because writing is one of the most effective outlets for my anxiety, so I create problems to write about. Okay, so that's not totally true. My problems are real; it's just that a person with a higher tolerance for stress would probably not see them as things worthy of writing about. They would just think, Eh, whatever, and get over it, then go clean the bathroom, which is what I should really be doing.
Yeah so anyway, where was I and why did I come here? LOL. It's like I have chemo brain, but wait... I'm not even doing chemo. Which, by the way, apparently makes my cancer 'not real' in some people's minds. It's not cancer without chemo. Whatever, people! It's like the moms who feel like you didn't actually have a 'birthing experience' if you didn't give birth to your kids naturally, without drugs, or worse, had a * gasp * C-section! OMG! It's hard enough being a mom in this insane world of competitive mom-ing (which I've already openly admitted to being DFL in); I don't exactly want to get into a pissing contest of My Cancer Is Worse Than Your Cancer.
Which is sort of why I am here, I think. The last paragraph provides a good segue, anyway. My cancer is not worse than your cancer; in fact, as far as cancer goes, it's pretty much the best cancer you can have, which is actually what my PCP told me when he broke the news to me. He said something like, 'If you have to have cancer, this is the best type to have.' In the large scheme of Cancer Land, I feel sort of guilty about having the best type of cancer: early stage, not overly aggressive, estrogen and progesterone positive ( = treatable), and in a body part that can be easily removed. But you know what? It still fucking sucks. Suckity, suckity, sucks. And I know that I'm supposed to feel grateful that I don't have advanced cancer, or triple negative cancer, or metastases, and trust me, I am, but having even the best type of cancer sucks way more than not having cancer at all. And I know this would all be much easier if I had a positive attitude, but seriously, after 40 years of being me, it is about as unrealistic to expect that I will miraculously become positive as it is to think that forgoing traditional treatments and ingesting various oils from the health food store will cure me. (Yes, someone actually suggested this to me. Seriously, even if you are tempted, resist the urge. I beg you.)
Not that I came here to have a pity party, but one of things that has been sinking in over the past few weeks is the reality of my 'new normal.' And speaking of 'new normal,' apparently this is one of those cute little catchy terms that is thrown around a lot in Cancer Land, along with things like 'cancerversaries' (which makes me want to throw up just reading it). I think when I was initially diagnosed, I was just so happy that I had the best prognosis possible that I got somewhat complacent, perhaps even smug. I felt like cancer was a little blip of inconvenience that was going to rob me of a summer vacation, but after all was said and done, I would go on with life and put it behind me. But as I move toward accepting my new reality, I realize this is so. so far from the truth. I was not wrong to rejoice in having 'the best cancer possible,' because I do have a good chance of going on to live a regular life and dying of something other than cancer (maybe something even worse), but the reality is that even the best cancer is no walk in the park. This is, at best, something that will cause me life-long anxiety, and at worst, come back in future in a location other than my breast (in cancer speak, a 'distant metastasis,' or simply 'mets') and kill me. Most people are familiar with the term 'remission,' but with breast cancer, they don't use the term remission, but instead 'no evidence of disease' or 'NED.' This is sort of unsettling; you are never truly cured. They can't ever say you don't have cancer; you could have it and they just can't see it. Sometimes they can't see it until it pops up somewhere else in your body, at which point it is life-threatening, and you are considered 'incurable' and terminal. And although I have the 'best cancer possible,' it is not The Very Best, because I am only 40. The Very Very Best in the My Cancer is Better Than Your Cancer scheme of things would be that I would have this cancer at age 80, or even 70, or 60, or 50. As my oncologist has reminded me, cancer at 40 is different than cancer at 60.
It has been surprisingly hard for me to wrap my mind around the idea of a mastectomy, and to be honest, I've been surprised by how hard it has been for me. I have a lot I could say about this, but I'll save it for a post of its own. For now I will just say that it is a difficult thing, no matter how you might feel about your breasts. However, looking waaaay forward, the mastectomy is not actually the most upsetting thing, and that's saying a lot, seeing as how I just wrote about how upsetting the mastectomy was. LOL. There is some relief in knowing that with a mastectomy, it's unlikely that I will need radiation, which is also much more difficult than many people realize. Unfortunately, a mastectomy will not eliminate my need for anti-hormone therapy. My cancer is strongly estrogen and progesterone positive, which is good news in that it is treatable, but bad news in that in order to treat it, I need to mess with my hormones. This is complicated, and has some really unpleasant side effects that while not life-threatening, can really diminish your quality of life. This is a long-term thing. It is quite possible that in the near future, I will not only have a mastectomy, but also have my ovaries, and perhaps uterus, removed. This is not a difficult surgery from a purely surgical standpoint, but as a biologist, I understand that ovaries do a lot more than make eggs so that we women can have babies. But I'll save all that for a post of its own. On top of this, if I go this route, I will need to take a medication called an aromatase inhibitor for ten years, which can have really bad and sometimes intolerable side effects. This is the best case scenario, that I live to experience all of this.
And again, I know I should be grateful I have a good chance of surviving this. I am. Don't get me wrong. I really truly am. I've been reading blogs by people in Stage IV who can't wait to have a mastectomy and radiation and chemo because anything that will give them a 5% chance of living for another six months is an amazing thing. If I were terminal, this post would be much, much different, and I am very grateful to not be terminal. At the same time, I don't believe that we should necessarily have to be happy all the time just because things could be worse. Things could always be worse, but they could also be better. I also understand that very few people who are terminal were terminal at the time of their first diagnosis; in fact, many started off like me. Of course, the Internet is biased toward the terminal, because terminal cancer provides more blogging material than I had cancer and now I'm over it does. I've never been a person to take a lot for granted; in fact, I feel that I've lived such a blessed life, I keep waiting for something horrible to happen. So, as morbid and pessimistic as it may seem, I am not going to take my 'best cancer possible' for granted. While I will continue to be grateful for what it is, I will never lose sight of the fact that this is something that can kill me. Maybe this is the beginning of the end of the crazy awesome luck I've had for the first 40 years of my life.
One of my colleagues is a very accomplished academic who, over the past year, has also become a good friend. This colleague's research is highly focused on breast cancer, so it did not surprise me when she told me that her mother had passed away of breast cancer. This was when my colleague was in high school and her mother was in her 40s. This colleague is a lot like me - not very open emotionally - so I don't know if her reluctance to talk about terminal breast cancer with me is that she just doesn't like to talk about it (which I get) or that she doesn't want to talk about it with me because she knows what I'm going through and her personal experience with this does not have a happy ending (which I get). At any rate, in the few discussions we've had about breast cancer, she shared with me that in the end, her mother had refused chemo because she was just done with everything. I never caught the full details but it's something like her mom had a mastectomy, had her ovaries and uterus removed, took tamoxifen, and was just... done. She said her mother felt like everything that could be taken from her had already been taken and saw no reason to keep fighting. So she refused chemo, and died. I get it, I do. I've had a few experiences with our medical system that make me truly understand why, at a certain point, many people feel like Just fuck this shit! And yet it hurts, knowing that my colleague went on to get a Ph.D. from Harvard, become a really amazing academic, marry and have two kids, and the whole nine yards. It must have been really bad for her mom to give up all chances of seeing this because she was done. It makes me worry just how bad this is going to get. Will I reach a point where I don't have any fight left in me? Where I just feel like a shell of a being with no reason to want to at least try to keep living? Is my colleague angry with her mother for not doing everything in her power to live to witness her accomplishments, to be Grandma to her children? Would my kids be angry with me if I just gave up, or would they understand?
A lot of people have told me that I've been very brave throughout all of this, but the truth is I have not. I have gone with the most straightforward choices in all cases, which is what any rational human being would do. I've also wallowed in self-pity, been self-centered, self-absorbed, short-tempered with my kids, I've lamented trivial things like not going on vacation, I haven't resumed my daughter's piano lessons because I'm still ticked off with her piano teacher, I've felt like I was at rock bottom even though I am aware it can and will get much, much worse, and might not ever get better, that my rock bottom now might very well be the baseline in my 'new normal.' In short, I feel like I've been a big, giant crybaby, minus perhaps the crying. It is not a good feeling.
But don't worry. I have a plan about how to get through this, how to stop wallowing in self-pity. It started with me going to see my PCP today to get a prescription for Ambien. (I started writing this yesterday.) With the exception of the first week of vacation, I've been averaging about 4-5 hours of sleep per night, in 1-2 hour increments, since about May 1st. This is not enough. This lack of sleep is certainly not helping my mental state. I am exhausted. Dr. A and I briefly discussed the possibility of me taking an anti-anxiety medication or an anti-depressant, but for now I am going to forget my worries about losing the ability to fall asleep on my own and take Ambien as needed. If this doesn't help significantly (though I believe it will), I will consider an anti-anxiety or anti-depressant. I've got other plans in place, too, but I will have to save those for another time. Right now, I need a nap.
Yeah so anyway, where was I and why did I come here? LOL. It's like I have chemo brain, but wait... I'm not even doing chemo. Which, by the way, apparently makes my cancer 'not real' in some people's minds. It's not cancer without chemo. Whatever, people! It's like the moms who feel like you didn't actually have a 'birthing experience' if you didn't give birth to your kids naturally, without drugs, or worse, had a * gasp * C-section! OMG! It's hard enough being a mom in this insane world of competitive mom-ing (which I've already openly admitted to being DFL in); I don't exactly want to get into a pissing contest of My Cancer Is Worse Than Your Cancer.
Which is sort of why I am here, I think. The last paragraph provides a good segue, anyway. My cancer is not worse than your cancer; in fact, as far as cancer goes, it's pretty much the best cancer you can have, which is actually what my PCP told me when he broke the news to me. He said something like, 'If you have to have cancer, this is the best type to have.' In the large scheme of Cancer Land, I feel sort of guilty about having the best type of cancer: early stage, not overly aggressive, estrogen and progesterone positive ( = treatable), and in a body part that can be easily removed. But you know what? It still fucking sucks. Suckity, suckity, sucks. And I know that I'm supposed to feel grateful that I don't have advanced cancer, or triple negative cancer, or metastases, and trust me, I am, but having even the best type of cancer sucks way more than not having cancer at all. And I know this would all be much easier if I had a positive attitude, but seriously, after 40 years of being me, it is about as unrealistic to expect that I will miraculously become positive as it is to think that forgoing traditional treatments and ingesting various oils from the health food store will cure me. (Yes, someone actually suggested this to me. Seriously, even if you are tempted, resist the urge. I beg you.)
Not that I came here to have a pity party, but one of things that has been sinking in over the past few weeks is the reality of my 'new normal.' And speaking of 'new normal,' apparently this is one of those cute little catchy terms that is thrown around a lot in Cancer Land, along with things like 'cancerversaries' (which makes me want to throw up just reading it). I think when I was initially diagnosed, I was just so happy that I had the best prognosis possible that I got somewhat complacent, perhaps even smug. I felt like cancer was a little blip of inconvenience that was going to rob me of a summer vacation, but after all was said and done, I would go on with life and put it behind me. But as I move toward accepting my new reality, I realize this is so. so far from the truth. I was not wrong to rejoice in having 'the best cancer possible,' because I do have a good chance of going on to live a regular life and dying of something other than cancer (maybe something even worse), but the reality is that even the best cancer is no walk in the park. This is, at best, something that will cause me life-long anxiety, and at worst, come back in future in a location other than my breast (in cancer speak, a 'distant metastasis,' or simply 'mets') and kill me. Most people are familiar with the term 'remission,' but with breast cancer, they don't use the term remission, but instead 'no evidence of disease' or 'NED.' This is sort of unsettling; you are never truly cured. They can't ever say you don't have cancer; you could have it and they just can't see it. Sometimes they can't see it until it pops up somewhere else in your body, at which point it is life-threatening, and you are considered 'incurable' and terminal. And although I have the 'best cancer possible,' it is not The Very Best, because I am only 40. The Very Very Best in the My Cancer is Better Than Your Cancer scheme of things would be that I would have this cancer at age 80, or even 70, or 60, or 50. As my oncologist has reminded me, cancer at 40 is different than cancer at 60.
It has been surprisingly hard for me to wrap my mind around the idea of a mastectomy, and to be honest, I've been surprised by how hard it has been for me. I have a lot I could say about this, but I'll save it for a post of its own. For now I will just say that it is a difficult thing, no matter how you might feel about your breasts. However, looking waaaay forward, the mastectomy is not actually the most upsetting thing, and that's saying a lot, seeing as how I just wrote about how upsetting the mastectomy was. LOL. There is some relief in knowing that with a mastectomy, it's unlikely that I will need radiation, which is also much more difficult than many people realize. Unfortunately, a mastectomy will not eliminate my need for anti-hormone therapy. My cancer is strongly estrogen and progesterone positive, which is good news in that it is treatable, but bad news in that in order to treat it, I need to mess with my hormones. This is complicated, and has some really unpleasant side effects that while not life-threatening, can really diminish your quality of life. This is a long-term thing. It is quite possible that in the near future, I will not only have a mastectomy, but also have my ovaries, and perhaps uterus, removed. This is not a difficult surgery from a purely surgical standpoint, but as a biologist, I understand that ovaries do a lot more than make eggs so that we women can have babies. But I'll save all that for a post of its own. On top of this, if I go this route, I will need to take a medication called an aromatase inhibitor for ten years, which can have really bad and sometimes intolerable side effects. This is the best case scenario, that I live to experience all of this.
And again, I know I should be grateful I have a good chance of surviving this. I am. Don't get me wrong. I really truly am. I've been reading blogs by people in Stage IV who can't wait to have a mastectomy and radiation and chemo because anything that will give them a 5% chance of living for another six months is an amazing thing. If I were terminal, this post would be much, much different, and I am very grateful to not be terminal. At the same time, I don't believe that we should necessarily have to be happy all the time just because things could be worse. Things could always be worse, but they could also be better. I also understand that very few people who are terminal were terminal at the time of their first diagnosis; in fact, many started off like me. Of course, the Internet is biased toward the terminal, because terminal cancer provides more blogging material than I had cancer and now I'm over it does. I've never been a person to take a lot for granted; in fact, I feel that I've lived such a blessed life, I keep waiting for something horrible to happen. So, as morbid and pessimistic as it may seem, I am not going to take my 'best cancer possible' for granted. While I will continue to be grateful for what it is, I will never lose sight of the fact that this is something that can kill me. Maybe this is the beginning of the end of the crazy awesome luck I've had for the first 40 years of my life.
One of my colleagues is a very accomplished academic who, over the past year, has also become a good friend. This colleague's research is highly focused on breast cancer, so it did not surprise me when she told me that her mother had passed away of breast cancer. This was when my colleague was in high school and her mother was in her 40s. This colleague is a lot like me - not very open emotionally - so I don't know if her reluctance to talk about terminal breast cancer with me is that she just doesn't like to talk about it (which I get) or that she doesn't want to talk about it with me because she knows what I'm going through and her personal experience with this does not have a happy ending (which I get). At any rate, in the few discussions we've had about breast cancer, she shared with me that in the end, her mother had refused chemo because she was just done with everything. I never caught the full details but it's something like her mom had a mastectomy, had her ovaries and uterus removed, took tamoxifen, and was just... done. She said her mother felt like everything that could be taken from her had already been taken and saw no reason to keep fighting. So she refused chemo, and died. I get it, I do. I've had a few experiences with our medical system that make me truly understand why, at a certain point, many people feel like Just fuck this shit! And yet it hurts, knowing that my colleague went on to get a Ph.D. from Harvard, become a really amazing academic, marry and have two kids, and the whole nine yards. It must have been really bad for her mom to give up all chances of seeing this because she was done. It makes me worry just how bad this is going to get. Will I reach a point where I don't have any fight left in me? Where I just feel like a shell of a being with no reason to want to at least try to keep living? Is my colleague angry with her mother for not doing everything in her power to live to witness her accomplishments, to be Grandma to her children? Would my kids be angry with me if I just gave up, or would they understand?
A lot of people have told me that I've been very brave throughout all of this, but the truth is I have not. I have gone with the most straightforward choices in all cases, which is what any rational human being would do. I've also wallowed in self-pity, been self-centered, self-absorbed, short-tempered with my kids, I've lamented trivial things like not going on vacation, I haven't resumed my daughter's piano lessons because I'm still ticked off with her piano teacher, I've felt like I was at rock bottom even though I am aware it can and will get much, much worse, and might not ever get better, that my rock bottom now might very well be the baseline in my 'new normal.' In short, I feel like I've been a big, giant crybaby, minus perhaps the crying. It is not a good feeling.
But don't worry. I have a plan about how to get through this, how to stop wallowing in self-pity. It started with me going to see my PCP today to get a prescription for Ambien. (I started writing this yesterday.) With the exception of the first week of vacation, I've been averaging about 4-5 hours of sleep per night, in 1-2 hour increments, since about May 1st. This is not enough. This lack of sleep is certainly not helping my mental state. I am exhausted. Dr. A and I briefly discussed the possibility of me taking an anti-anxiety medication or an anti-depressant, but for now I am going to forget my worries about losing the ability to fall asleep on my own and take Ambien as needed. If this doesn't help significantly (though I believe it will), I will consider an anti-anxiety or anti-depressant. I've got other plans in place, too, but I will have to save those for another time. Right now, I need a nap.
Saturday, July 11, 2015
Blessings and Hopes
I enjoy reading, and in the past, I've underestimated the amount of reading that I'll accomplish on a trip such as this one. For this trip, I brought two really long books, hoping it would be enough, and I actually haven't touched either one of them. Instead, my reading time consists of consulting Dr. Google about mastectomies and various reconstruction options, and reading various blogs I've stumbled upon. So many people have told me that they are happy I've been able to take this trip and 'get away' from everything. But the truth is there is no getting away from this. Not only does this disease, like any other, live inside me, but also... it is me. The cells that are doing this to me are my own. I have only myself to blame for this, which sucks. LOL.
There is so much I want to write right now, about the decisions that lie ahead, and the research I've done about the decisions that lie ahead, but all of that will reveal itself in due time. What is on my mind right now is something bigger than this, something upon which I believe my future well-being depends perhaps more than anything else, and that is my mental well-being.
There are many aspects to mental well-being, which is probably why mental illness, despite many amazing advances in medicine, remains poorly understood. Science and medicine have provided anti-anxiety medications, anti-depressants, and hormonal therapies, but these are only part of the puzzle. The rest of it, it seems, is up to individuals to solve for themselves.
I know right now that my future depends on me developing a positive state of mind, and I believe a large part of that will depend upon me tending to my spiritual self. I do not mean this with any sort of expectation that positive thinking or more praying will cure my cancer or any of that sort of nonsense. If you know me in real life, you probably know I am not an overly positive person, and that I am not religious. And even if you know me only by Internet, you probably know this. Heck, even if you're brand new here, I'm sure it's not hard to figure out that I'm not an overly positive person, and posts like this don't make it hard to figure out that not only am I not religious, I am also downright irreverent.
As someone who is happily not religious, it is nonetheless an interesting observation for me that many people who experience extreme circumstances or deal with intense medical problems, such as breast cancer, lean heavily on their religious beliefs to get them through. Even while directly engaged in a staring contest with death, these people believe it is God's will that they should die an agonizing death at too early an age, leaving behind widowers and young children who will never know their mother.
I get it, I really do. And I honestly wish I could believe the same; everything would be so much easier if I could give my life up to God. However, after decades of reflection, I can say with certainty that I do not and never will believe in a God who is looking out for me. I never have and never will believe in a divine reason for everything that happens. Of course all things happen for a reason, but sometimes that reason is that you just got extremely lucky, and sometimes that reason is that life is unfair, and you are just the wrong person in the wrong place at the wrong time. A few years ago, a dear friend and her three daughters were killed in a horrific and practically unheard of freak accident, and nothing will ever convince me there could be a reason for this other than bad, horrible, terrible, ridiculously unfair luck. I do not believe in a God who grants miracles on a case-by-case personal basis. I do believe in miracles, however. Miracles are simply statistical improbabilities, not impossibilities. If there is a 0.01% chance that a person can be cured of something, it would be considered a miracle if she were. But 0.01% means that one person out of 10,000 can be cured. Someone has to be that one person; otherwise the chances would be 0%. So by definition, multiple miracles happen every day. Sometimes people get lucky and are the right person in the right place at the right time and are the recipient of a miracle. But I do not believe in a God who would grant one person a miracle and deny another. I never have and never will.
It might surprise you to know that despite all of this, I am a spiritual person. I know many religious people consider the self-description of 'not religious but spiritual' to be a cop-out, but I believe that I have lived my life with as strong of a moral compass as even my most devoutly religious friends, and that if I could have a sit-down dinner with Jesus, we would see eye-to-eye on many, many issues. That said, I believe that as I move forward toward my 'new normal,' an important component of my mental well-being is to be sure I am grounded spiritually. Undoubtedly, I've neglected this part of my life too much in the past, and this is my wake-up call. All things happen for a reason, after all. ;-)
Since I spent a lot of time writing about what I don't believe, I will now try to focus on what I do believe.
So many of you who know me and know I'm not religious have been so kind in sending me your love and good thoughts, but I want you to know that I am okay with prayer. If you are a praying type, I would be honored to be in your prayers. If you are not a praying type, the love and good thoughts are awesome as well. I hope that by sharing what I've written above, you will realize this is not an OMG I have cancer, I better start believing in God and asking people to pray for me type of revelation. I do not believe in Heaven, so this is not a last-ditch effort to secure my entrance through the pearly gates, should things turn south. Likewise, I do not believe in Hell, so I am not afraid of burning in Hell. I am and always have been thankful for my friends who accept me as I am, cynical and irreverent, and hope that the diversity in the friends I have is a testament to the strength of the higher power I believe in. It is one that brings people together, not divides.
I'm going to start a new tradition here, one that I hope will help me remain spiritually intact as I face the difficult days ahead. I'm going to start praying here. These prayers will always be two-fold; the first part will always be my gratitude, my blessings. This type of prayer is what I was reared with - thankfulness for what I do have. I've also been reading the American Girl book series about Kaya, a Native American girl, with my daughter, and I can't help but notice that before every meal, or every hunt, or every major event, they all pray. They pray with thanks for the food they have, for the animal that gave its life so they could have food, to the earth that gave them that animal, to whatever. I'd like to start a regular tradition of thanking the powers that be for what I have. At the same time, I am also going to outline my hopes for the future, and be so bold as to ask those who pray to pray for me.
So here are my inaugural prayers. They are necessarily limited to the past few weeks of my life; if I go back any farther, I'd have to write a book.
Blessings
Ever since I started to deal with my horrendous hip pain over a year ago, I've come to appreciate the many blogs out there, which show the more personal side to dealing with particular conditions. In fact, it is others' blogs that inspired me to start this blog while recovering from hip surgery. Never ever in a million years would I have guessed this would end up being a blog about cancer, but yet here we are. I've often felt that I should start a new blog, or rename this one, or at least take on a new Internet identity that captures my plight a little better than '39 and Hip,' but at the same time, I have to think this is a good reminder that there are many dimensions to a person's life, and sometimes they are so intertwined it is futile to try to deal with just one at a time. Life is messy, like a tangled ball of yarn. But this is good, all of the strings being intertwined. One string may be pulling us down, but we can grab hold of another that may help buoy us. And if that one doesn't help, we can keep reaching until we find one that does. We are never dangling from a single string upon which our entire life depends. There are multiple routes out of our dark times; we just have to find the combinations, the right balance, to keep ourselves afloat. I pray that I have it within me to do this.
There is so much I want to write right now, about the decisions that lie ahead, and the research I've done about the decisions that lie ahead, but all of that will reveal itself in due time. What is on my mind right now is something bigger than this, something upon which I believe my future well-being depends perhaps more than anything else, and that is my mental well-being.
There are many aspects to mental well-being, which is probably why mental illness, despite many amazing advances in medicine, remains poorly understood. Science and medicine have provided anti-anxiety medications, anti-depressants, and hormonal therapies, but these are only part of the puzzle. The rest of it, it seems, is up to individuals to solve for themselves.
I know right now that my future depends on me developing a positive state of mind, and I believe a large part of that will depend upon me tending to my spiritual self. I do not mean this with any sort of expectation that positive thinking or more praying will cure my cancer or any of that sort of nonsense. If you know me in real life, you probably know I am not an overly positive person, and that I am not religious. And even if you know me only by Internet, you probably know this. Heck, even if you're brand new here, I'm sure it's not hard to figure out that I'm not an overly positive person, and posts like this don't make it hard to figure out that not only am I not religious, I am also downright irreverent.
As someone who is happily not religious, it is nonetheless an interesting observation for me that many people who experience extreme circumstances or deal with intense medical problems, such as breast cancer, lean heavily on their religious beliefs to get them through. Even while directly engaged in a staring contest with death, these people believe it is God's will that they should die an agonizing death at too early an age, leaving behind widowers and young children who will never know their mother.
I get it, I really do. And I honestly wish I could believe the same; everything would be so much easier if I could give my life up to God. However, after decades of reflection, I can say with certainty that I do not and never will believe in a God who is looking out for me. I never have and never will believe in a divine reason for everything that happens. Of course all things happen for a reason, but sometimes that reason is that you just got extremely lucky, and sometimes that reason is that life is unfair, and you are just the wrong person in the wrong place at the wrong time. A few years ago, a dear friend and her three daughters were killed in a horrific and practically unheard of freak accident, and nothing will ever convince me there could be a reason for this other than bad, horrible, terrible, ridiculously unfair luck. I do not believe in a God who grants miracles on a case-by-case personal basis. I do believe in miracles, however. Miracles are simply statistical improbabilities, not impossibilities. If there is a 0.01% chance that a person can be cured of something, it would be considered a miracle if she were. But 0.01% means that one person out of 10,000 can be cured. Someone has to be that one person; otherwise the chances would be 0%. So by definition, multiple miracles happen every day. Sometimes people get lucky and are the right person in the right place at the right time and are the recipient of a miracle. But I do not believe in a God who would grant one person a miracle and deny another. I never have and never will.
It might surprise you to know that despite all of this, I am a spiritual person. I know many religious people consider the self-description of 'not religious but spiritual' to be a cop-out, but I believe that I have lived my life with as strong of a moral compass as even my most devoutly religious friends, and that if I could have a sit-down dinner with Jesus, we would see eye-to-eye on many, many issues. That said, I believe that as I move forward toward my 'new normal,' an important component of my mental well-being is to be sure I am grounded spiritually. Undoubtedly, I've neglected this part of my life too much in the past, and this is my wake-up call. All things happen for a reason, after all. ;-)
Since I spent a lot of time writing about what I don't believe, I will now try to focus on what I do believe.
- I believe in a higher power, one that is greater than myself and my family, and all of humanity. I believe this power allows things to happen that we, as humans, cannot explain, whether good or bad.
- I believe humans can achieve eternal life by living in a way that others will want live - by saying things others will remember, by doing things others will want to do, by sharing things they've learned throughout their own lives that others will continue to share. I believe this is how one's spirit continues to live.
- Biologically, I am certain of immortality, because all living things from bacteria to fungi to plants to animals are made of the same molecules, and when we cease to function on an organismal level, our molecules are recycled and go on to create more life. We can appear in unlimited forms in unlimited numbers of lives for as long as Earth continues to exist. The carbon in our bodies may eventually turn into coal, being burned for energy, let off as carbon dioxide, taken into a plant, turned into sugar, and eventually incorporated into the creature that eats that plant. Or maybe we will take a more direct route, being decomposed by bacteria and fungi, who will use some of us for themselves, and return the rest of us to the soil, to find new life in a different form. I find great comfort in understanding the cycle of life, and am thankful for all the creatures who lived before me whose molecules create the cells that create me.
- I believe in the power of prayer. I know the word 'pray' has a lot of implications, but for lack of a better term, I will say that I pray regularly. I am not certain to whom I am praying - some of it is to that ambiguous higher power I described earlier, the one that doesn't watch out for people individually. Regardless, there is relief in talking to someone who will listen and revealing my most desperate hopes, however improbable. I believe that prayer, and collective prayer, can make a difference. I don't believe prayer can cure someone of an incurable disease, but I do believe it can give a person the strength to walk through that disease with dignity, and to give her immortality because of that dignity, and the wisdom that dignity allowed her to pass onto others.
So many of you who know me and know I'm not religious have been so kind in sending me your love and good thoughts, but I want you to know that I am okay with prayer. If you are a praying type, I would be honored to be in your prayers. If you are not a praying type, the love and good thoughts are awesome as well. I hope that by sharing what I've written above, you will realize this is not an OMG I have cancer, I better start believing in God and asking people to pray for me type of revelation. I do not believe in Heaven, so this is not a last-ditch effort to secure my entrance through the pearly gates, should things turn south. Likewise, I do not believe in Hell, so I am not afraid of burning in Hell. I am and always have been thankful for my friends who accept me as I am, cynical and irreverent, and hope that the diversity in the friends I have is a testament to the strength of the higher power I believe in. It is one that brings people together, not divides.
I'm going to start a new tradition here, one that I hope will help me remain spiritually intact as I face the difficult days ahead. I'm going to start praying here. These prayers will always be two-fold; the first part will always be my gratitude, my blessings. This type of prayer is what I was reared with - thankfulness for what I do have. I've also been reading the American Girl book series about Kaya, a Native American girl, with my daughter, and I can't help but notice that before every meal, or every hunt, or every major event, they all pray. They pray with thanks for the food they have, for the animal that gave its life so they could have food, to the earth that gave them that animal, to whatever. I'd like to start a regular tradition of thanking the powers that be for what I have. At the same time, I am also going to outline my hopes for the future, and be so bold as to ask those who pray to pray for me.
So here are my inaugural prayers. They are necessarily limited to the past few weeks of my life; if I go back any farther, I'd have to write a book.
Blessings
- I'm thankful for the wonderful care I've been receiving. The doctors I have seen have all been top-notch. I am so grateful to Drs. J and M for guiding me toward the 'right' decision the week before I left, and to Dr. L for communicating with me by e-mail while I've been on vacation.
- I'm thankful for my husband's amazing support, and for my kids, who are of course my main motivation for knowing I need to get through this with my spirit intact, and ultimately, beat this.
- I'm thankful for being able to take this trip after all. Some amazing things have happened friendship-wise on this trip that have lifted my spirit immensely. For one, we became much closer to some friends from home, who spent part of the time down here with us. (The story on how is came to be is here.) We had such a good time with them.
- We also became friends with another family staying in the condo across the pool from us. They have a daughter our daughter's age, and the girls were like two peas in a pod from day one. Both my husband and I really enjoyed the parents, and they also had older children who were lovely. By the end of two weeks, it was almost as if they were old friends. The irony is that they are a very religious family; in fact, the father is actually a minister. It's as if God knew I needed a friend down here to put some joy in my heart, and sent me Kay. Oh wait, I don't believe in that type of thing. ;-) Regardless, it was truly a blessing - an amazing, amazing blessing for which I am so grateful.
Hopes
- I pray for the wisdom to make the 'right' choices about some tough decisions that lie ahead, that fear and emotions won't cloud my judgment about the best medical treatment.
- I pray my loneliness through all of this will subside. In all of the blogs that I've been reading, so many people have written about what a lonely experience this is. They are right; it is lonely in a way that is very hard to describe. Losing friends and becoming estranged from family is not uncommon. I pray that I will be able to keep my friends throughout all of this, and I know that some of this depends on me. I pray that I will be able to behave in a way that will not drive people away from me. I also pray that people will be understanding of my shortcomings and continue to walk with me through this hell. I pray that I can make things right with my parents and brothers. As desperate as it may sound, I pray you will all stay with me, even if I have pathetic and undignified moments.
- I pray that I can find a way to manage my anxiety, and start sleeping again.
- I pray for safe travels home, especially considering I will be doing it on zero hours of sleep.
Thursday, July 2, 2015
argggg and poop
Since my last post, I managed to get myself and my family onto a plane and to a place where I can spend a lot of time moping around and feeling sorry for myself, where it doesn't really show. When you are lying on the beach or by the pool, no one really knows if you are sleeping or just enjoying the UV light ( = future cancer), or mourning the fact that this might be the last time you ever appear in public in a swimsuit.
This time has been good for me, though. Emotionally, I feel like I am at a low point, and I don't think I've started coming up yet. But I am working my way along the bottom, moving forward. The water is shallow, not as deep as it once seemed. I know I can come up whenever I want to; it is simply a matter of putting my feet down and standing up. I am just not ready yet, and I think that's okay. There are some lovely things at the bottom, like nine-legged sea stars, and some really amazing doctors.
Without a doubt, the fact that Dr. L was on vacation, and now I'm on vacation, has been a tricky part of this. As much as I wanted to take this trip, and as much as I'm thankful I was able to, I also think not being in town at a time when I really feel like I need to be seeing doctors has added a lot of angst to an already angst-filled situation. (Note to self: Next time, try not to get cancer in the middle of the freaking summer.)
I'll be eternally grateful for the doctors that I did see, Dr. J and Dr. M, before I left town. I actually hand wrote a thank-you note to Dr. M before I left, telling him this. That discussion we had before I left town was certainly not what I wanted to hear, but has turned out to be priceless - preparing me for the reality of my situation, and helping me understand where I need to get to mentally.
And then there is my beloved Dr. L, who never disappoints. Her NP had told me she would have her call me when she got back into town, so I could at least talk to her on the phone ASAP. Just to make sure she didn't forget, I sent a message via the patient portal on Monday, which is when I thought Dr. L was getting back.
6/29/2015 8:12 AM
Subject: Non-Urgent Medical Question ( = the default on the patient portal)
Dr. L,
I hope you had a nice vacation. NP called me last week to tell me the results of the pathology report. I am very surprised and upset by this. I do have an appointment with you July 22nd that [the nurse navigator] set up for me, but that just seems like such a long time to wait as I am trying to figure out how to proceed and work toward accepting it. I am hoping that I can talk to you, by phone or e-mail, before 7/22. Is this possible?
Thank you,
Waning
While Dr. L is super good at getting back to me by e-mail, she almost always calls me first, so I was sort of surprised when I got such a quick response, with no phone call.
6/29/2015 8:46 AM
Subject: RE: Non-Urgent Medical Question
Hi Waning,
It's NP. (I check all of Dr. L's messages while she is out). I will leave this message in her box until she gets back this week (July 1st). I also have left her a message after our conversation last week that you will be out of town but available by cell phone to talk. Hang in there!! I know all of this news is disappointing. Please let me know if there is anything else I can do to help.
NP
So of course, on July 1st, I kept my phone near me all morning, hoping I might seem pathetic enough for Dr. L to call me right away. After all, I'm sure that after 10 days of vacation, I am the only patient who was anxious to hear from her. LOL. And... she did call, but... somehow I managed to miss it. In retrospect, this might have been a good thing because I don't do well on the phone. Face-to-face is my preference, but after that it is e-mail. Plus, when she called, I was surrounded by people, which is never a good situation for a Cancer Conversation.
I wasn't able to check my e-mail until the afternoon, and of course, Dr. L had followed up her phone call with an e-mail.
7/1/2015 11:09 AM
Subject: argggg (LOL - love this; it's something I would use as a subject line for a friend, but not a patient (if I were a doctor, that is).)
Hi Waning, I reviewed your pathology and it looks like at least 3 of the margins were either positive or too close. I agree with Dr. J that you will have a better result in the long run with a mastectomy. We should be able to give you a very nice result with reconstruction. When do you get back in town? I can certainly have Joanna get you in sooner to discuss.
Jane
(You know it's bad when you are suddenly on a first-name basis with your surgical oncologist.)
I replied:
7/1/2015 2:39 PM
Subject: RE: argggg
Thank you for getting back to me so quickly. This is such a drag. I am back in town July 11th and can come in any day that week except for the 15th.
She replied:
7/1/2015 2:59 PM
Subject: RE: argggg
I know, poop! (Haha, yes, she actually wrote that. POOP. Seriously! That's what this is.) I will forward your message to Joanna and she'll get you a sooner appt.
Jane
Then, I ended up writing a middle-of-the night angsty e-mail that just so she would understand how needy I am going to be when I see her next time. I really don't think I was expecting a response; I just need to get it out, and at this point, I don't care if people know I am crazy. It's called rock bottom.
This pretty much sums up how I feel.
7/1/2015 10:15 PM
Subject: RE: argggg
Thank you, I did get an earlier appointment and that really helps. I am just really freaked out about everything at this point. Going to the doctor freaks me out. (I think I've seen more doctors in the past two months than the rest of my life combined.) Surgery freaks me out. (It took me 17 years to try to have my hip fixed, and I only did it because I couldn't really walk anymore.) Plastic surgeons REALLY freak me out. I don't have tattoos or dye my hair or even really wear make-up, so the idea of having something implanted into me freaks me out. I am freaked out I will feel resentful of having a fake boob every day for the rest of my life. But I am also freaked out by the thought of trying to go swimming if I don't do reconstruction (and I like swimming :( ). I'm freaked out about adding more negativity to my already questionable personality. But, I'll consider this my farewell to swimsuits vacation, and try not to think about it too much until the 16th. Thanks again for your help.
(For the record, this was the absolute maximum number of characters I was allowed to type.)
This morning, I was surprised to receive this very sweet response.
7/2/2015 9:09 AM
Subject: RE: argggg
You poor thing! I know how hard this is, but we will get you through this. To say this is life changing sounds somewhat trite, but I think if you can really focus on being as positive as possible, this will be easier. It's hard knowing you will never be "normal" again, but you will get used to your new normal. I have every confidence that you will be cured and live a happy, fun life! I think the reconstruction thing is very important for some people and not at all important for others. Most people prefer to do it at the time of the mastectomy, a few choose to do delayed and some never do. There are prosthesis for swimming as well. Would it help to go look at what's available? We use a store called "[For the Boobless]" for our prosthesis. They would be more than happy to see you and show you some things.
Would you like us to refer you to speak with a social worker or counselor? We also have some support groups available.
Please let me know how we can help.
Jane
Again, this is new territory. Do I need help? I don't know. I have no idea what I need. Did my e-mail make me sound like a woman in need of a social worker or counselor? Yikes. How humiliating.
As soon as I got a chance, I shot off a quick reply.
7/2/2015 6:16 PM
Subject: RE: argggg
Dr. L,
Thank you so much for your message. I do not think I need anything right now except a little more time. As a science-y person, I am okay with things that are predictable, even if they aren't good. I felt very positive even after the 2nd surgery but just didn't see this coming at all. But you are right - I will get through this. I have to.
I thank you from the bottom of my heart for the amazing care that you've provided for me.
Waning
And that, friends, is where things are right now. Despite this early-stage cancer, I need to have a mastectomy. To be honest, I am having a much harder time with this than I thought I would. Of course, I honestly never thought I would be here in the first place, so I never spent a lot of time thinking about it. OTOH, I have spent some time contemplating the enormity of a mastectomy, mostly gloating that I didn't need one. (The fates are a fucking bitch, no?)
As Dr. L said, this is life-changing, as trite as it may sound. I have such a good life, I don't want it to be changed. But the reality is that it will change, and I guess it is up to me, as I try to surface from rock bottom, how this is going to change my life.
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