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Dealing with death is hard, there are pitfalls no one can warn you about. Insurance, the VA, taxes. Perhaps my learning curve may be of help to someone out there going through the death of a loved one.

"The doctor wants to do a mammogram" It hadn't even been a month since we last went to Dana Farber in Boston and we were back again. And it hadn't even been two months since I last had a mammogram and I had to get another one. I had never had a mammogram before this year so I thought after getting one, I'd be good for a while. That assumption was clearly wrong.

For me, going to any doctor is nerve racking. Even if I've seen that particular doctor many times before. There's a condition called health anxiety and I definitely suffer from that. But more on that later. Going to a doctor in a big city is even more overwhelming. There's the drive and traffic to deal with to get there on time, the parking situation to figure out, finding the correct place to check in and which floor you're supposed to go to, and then the waiting. It's a lot to handle before even seeing the doctor. Our second time going to Dana Farber went smoother than the first since we knew a little more of what to expect but I didn't anticipate additional testing to be done.

We met with a very nice surgeon to discuss what they recommend as the best options for when it comes time for me to get surgery. They suggested that we have this consult sooner rather than later after starting chemotherapy so we would have plenty of time to figure out our plan. It's always reassuring to have another professional set of eyes look at imaging and your body. She did a breast exam to confirm the size and location of the tumor and also checked the lymph node area of concern. Then we went over my medical history for the umpteenth time and all of my imaging. After that, my surgery options were laid out followed by lots and lots of questions from us.

We had thought that my choices were either a lumpectomy or a mastectomy. Lumpectomy would only remove part of the breast while a mastectomy would remove the entire breast. For my type of cancer, either option had about the same chance (slim) of recurrence. It turns out that with the size and location of my tumor, a lumpectomy was pretty much off the table. So now my choices were now mastectomy or a double mastectomy. Again, either option had about the same chance of recurrence and recovery would be the same. This is where all the questions came in. Thinking ahead if we ever wanted to have another baby, would I be able to breastfeed? If I got a mastectomy, I would only be able to breastfeed on the one side and with a double mastectomy I wouldn't be able to at all. Would I have any sensation or feeling in my breast after the surgery once implants were placed? The answer was no. So I could keep one breast so I could still have feeling and breastfeed again if we had another baby or if I could have a new set of breasts that would be even and perky for life. Or I could just remain a "flatty" (not get breast implants). The surgeon said that because I had breast cancer, any subsequent surgeries on that area that were needed to lift or adjust any lopsidedness throughout my life would be approved by insurance. And then there was the topic of nipple sparing. A nipple-sparing mastectomy leaves in place most of the healthy breast skin, the nipple and the areola. Only the tissue contained within the envelope of skin around the breast is removed. In order to have this operation, your cancer must not be in the nipple or tissue just underneath the nipple so I'm not sure if I'd be a candidate for that. It would basically preserve the nipple for reconstructive double mastectomy. All of these choices to consider! It's a good thing we did have so much time to think about it. Then there was the decision of where to have the surgery done- locally or at Dana Farber. Because of the amount of times we'd have to go back for check-ups and having a baby to take care of, we're leaning toward just having the operation done locally. But again, we have plenty of time to figure that out.

The surgeon wanted an additional ultrasound done on my armpit where the affected lymph nodes are. The MRI that I previously had done showed the breast but only a part of the armpit so she wanted to see more of that. During my biopsy, small metal clips (tissue markers) were put in to mark the exact site of the biopsy so that a doctor can find it again easily if they need to. I had three clips put in: two in the breast and one in the armpit. Apparently there are different types of clips and some are easier to see than others. The surgeon was concerned that I had the type of clips that were harder to see so she wanted to do the ultrasound as well to determine if they would need to put another clip in. This was important to do since I am getting chemotherapy before surgery to shrink the cancer and the clips are placed so that the cancer can still be found and removed at the operation. Thankfully they were able to get us into imaging right away so we wouldn't have to take another trip to Boston so soon.

"You may be at risk for early menopause." At age 37, menopause isn't exactly something that I thought I'd have to worry about just yet. I had (thankfully) just gone through a healthy pregnancy so menopause was the furthest thing from my mind. Count that as yet another fact about chemotherapy that I didn't know. I have since learned that some breast cancer chemo treatments can bring on 'medical menopause' which could be temporary or permanent. With medical menopause, the ovaries stop functioning and hormone levels fall over a period of weeks or months — not over a few years, as what usually happens with natural menopause. It wasn't until I went for a second opinion that this risk was brought to my attention.

A second opinion wasn't really something I was taking into consideration. Not at first anyways. I was happy with my medical team at the breast care center that I was going to and I thought they were doing a good, thorough job. They explained the what, how and why of all the tests and treatments that they would be doing in ways that were easily understood so I didn't feel the need to seek reassurance for my diagnosis. But then I spoke with one of my friends' moms who works in healthcare and she shared a story with me about a friend of hers that decided to get a second opinion after their cancer diagnosis and they learned that they were mis-diagnosed. It's not overly common but it can happen. When you are about to go through treatments and surgeries that could save your life you don't want to leave any doubt that they are your correct paths toward recovery. So the more I thought about it, the more I felt it was a good idea. There are hospitals in bigger cities that specialize in cancer research and have cutting edge treatment options so if I had an opportunity to get their feedback, why shouldn't I? Now the question was which one to go to? We are very fortunate to live a day trip away from three amazing cancer centers: Memorial Sloan Kettering in Manhattan, Roswell Park in Buffalo, and Dana-Farber in Boston. We contacted all three places and Dana-Farber was able to get us in the quickest. So shipping up to Boston it was!

I have been to plenty of medical facilities but I had never been to anywhere quite like Dana-Farber before. It was equal parts impressive and overwhelming. As soon as we walked into the lobby I was instantly taken aback. There were so many floors and doctors! Patients in wheelchairs waiting for rides, some of them looking pretty rough. My mind went into overdrive; panic mode. Will I look this sick a few months from now? But I feel okay right now. I don't feel sick. Is this what cancer treatments do to you? Obviously if it saves my life, I'll do whatever I need to do but to say I was a little freaked out would be an understatement. Once I composed myself and we met with a doctor, I felt a little better. Other than some minor tweaks with the chemotherapy and immunotherapy plan, this doctor agreed with my original assessment. However, the mention of early menopause caught me off guard.

During that initial consultation at my local breast cancer center, fertility was discussed briefly. Because I went through IVF treatments in order to have a baby, the doctor suggested if we wanted another child that we may want to go through another egg retrieval before chemotherapy. When I said that we already had frozen embryos and I didn't want to delay getting treatment for the cancer, the doctor moved onto the next topic. So I thought since we had the frozen embryos I didn't have anything else to worry about in terms of getting pregnant again (if we decided we wanted to) after going through cancer treatments. I was wrong. The doctor at Dana-Farber informed us about the possibility of early menopause caused by chemotherapy but said that there was a shot that I could get that could help preserve fertility called Lupron. I would have to contact my fertility clinic and have them write a script to send to my oncologist to administer. My previous insurance covered my fertility treatments but I no longer had that insurance and Eric's insurance doesn't cover that so we weren't sure if we would even be able to get this medication without having to spend a fortune out of pocket. Of course it was also time sensitive because my chemo port was scheduled to be put in that next week and then chemo would start shortly after. And as is the case with getting any prescription medicine, I would need to have a consultation with my fertility doctor first before I could get anything going. So much to do in so little time! Thankfully I was able to get a phone consult with that doctor quickly. It was then that I learned that this Lupron shot works best when it's administered at least a week or even two before chemotherapy starts. With the port scheduled to be put in later that week and chemo to follow early that next week, I didn't have time to get the Lupron shot figured out with prior authorization, who was going to administer the shot (fertility clinic or oncologist), and making sure it was in my system for the appropriate time before chemo started. I suddenly had more extremely difficult decisions to make. Nothing like adding more stress to an already stressful situation!

I had just had a baby a few months ago and before then it had been a struggle to even get pregnant. If we didn't have Hailey there would be an even harder decision that we would have to make that we thankfully didn't have to worry about. I can't imagine the stress that some women have to undergo when they're diagnosed with breast cancer and decide to go through an egg retrieval before getting chemotherapy or having surgery in order to preserve their fertility. That is a lot for both your mind and your body to handle. And financially, it is a huge investment that many cannot afford. After three egg retrievals, we are extremely fortunate to have a few embryos that were able to be frozen. I was/ am by no means set on having more children. I am beyond grateful that I was even able to have one and I realize so many people would give anything to have a baby that can't. I definitely don't want to come across as greedy or insensitive to those people by my own want to potentially try to have more. Yes I am content with having Hailey right now and I will never take her for granted but what if I decide a few years down the road that I really did want to have another baby? And I have those embryos waiting for us. I didn't want to regret not getting the Lupron shot even though it's still not completely a sure thing that will guarantee a successful pregnancy after cancer treatments. But also with an aggressive tumor just waiting to spread, was I willing to wait another week or two to start chemo in order to get a shot that may or may not help preserve my fertility for another baby that I may or may not try to have? There was a lot of soul searching on my part but ultimately I decided that if there was even the slightest possibility that I would want another child, I had to do anything I could to protect that and leave that opportunity available. Though if it was going to take weeks to figure out the logistics of the shot, I would proceed as planned with chemo and have the peace of mind that at least I tried. And that would have to be enough because I have to be selfish enough to not sacrifice my own life for a life that hasn't even been created yet.

After so much back and forth with the oncologist, the fertility clinic and insurance, we were FINALLY able to get the Lupron. It only required a co-pay and didn't need prior authorization. And I decided to only move my chemotherapy from a Monday to a Thursday so as to not delay it by too much. I got the shot of Lupron that Monday before chemo and hoped that being in my body for three days ahead of chemo would be better than nothing. How effective it will be remains to be seen but at least I ended up getting it. I will get the shot of it once a month for two more times and hope for the best. Despite all of the additional drama amd legwork, I am still glad we went to get that second opinion! You never know what you might learn from it.

MedicalResearch.com Interview with: Dr. Davids Dr. Matthew S. Davids MD MSC Associate Director of the Dana-Farber CLL Center Attending physician Lymphoma Program, Division of Hematologic Malignancies Dana-Farber

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