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still collecting info

March 28, 2018

We met with the surgeon Monday and I thought I’d be able to give an update later that day, but the picture has gotten cloudier since then.

The appointment was good. One important piece of information – she did not think this was a recurrence, but instead suspected that this was something else that hadn’t been detectable last fall. She said this was comforting since a recurrence that fast would be bad. She also recommended a mastectomy, but said she would consider a lumpectomy under very specific conditions: there are 3 spots that are of concern to her. She would biopsy all of them beforehand, and then would require that I followed up with radiation. Initially, I felt like with 3 suspicious spots, I would be better of just removing the whole thing. What kind of crazy mess of breast tissue do I have that it grows not just one cancer but two or more?

She pointed out that my surgeon in the fall was probably operating (wah wah) under certain assumptions (like that I would follow up with radiation.) This may be why she didn’t do more surgery when the margin was so small. I know that we don’t owe a surgeon anything after they do their work, but I can appreciate that they do their work with certain understandings.

We talked about mastectomy and what we might find, how many lymph nodes she would want to take out… I don’t remember what else. She did an ultrasound of my armpit since there was some light (or whatever they call it) in there on the PET scan. She didn’t find anything unusual. It could have showing because it was the day after my biopsy and the lymph nodes were extra busy. That was a relief since lymph node involvement is a big determiner in follow up treatments.

She told me that if there is a chance I will do radiation afterwards, most plastic surgeons will want to wait to reconstruct so that isn’t something I have to decide now. That was a big relief since I haven’t even decided if I’m getting a mastectomy, much less what I want afterwards. We didn’t get into the specifics of mastectomy because I just don’t think I was ready for it. She said to go home and take a few days to think about it, and that she would like a decision by Friday.

Later that day, though, I called her asking some more specific questions about types of mastectomies. There are skin- and nipple-saving/sparing options. You can’t get a nipple saving one if you are delaying reconstruction since there won’t be anything to build it back on. They can save some skin though and she discussed different reconstruction options including using tissue from my back. It sounds terrible but she said it may be a really good option. Actually, it all sounds terrible right now.

During this conversation, though, she mentioned that she had looked at my pathology reports again and seen that the makeup of my current tumor was very different from the original tumor. I went back later and looked myself, and sure enough, they are different. The original one was grade 3, estrogen 70%, progesterone 70%. This one is grade 1, estrogen 5%, progesterone 0%. I had to google “how to read your pathology report” and several other things, but I could tell enough to know that they were different. I didn’t know, though, what this meant for me. Was this normal? Did they sometimes change after the fact?

I’ve spent the last 48 hours emailing and calling all three of my doctors. I talked to a PA today who told me that yes, this is a different manifestation. It is unusual, but not unheard of. And, the current one is less aggressive than the original one. It was comforting to think that maybe all the treatments I’ve done have actually dealt with the evil monster from the fall. Not that it’s great that I have yet ANOTHER cancer, but at least it doesn’t appear to be the same evil one.

I’ve also been trying to get some information about my medicine. In spite of sleeping around 8 hours most nights, I’ve been incredibly tired all the time. Tired to the point that taking care of my kids seems like more than I can handle (and Jonathan started a trip yesterday.) And if you’ve ever dealt with depression, sometimes it starts out feeling like that. Like you’re so tired you can’t even deal with life. I don’t want to go there, so I asked if I could switch back to the one that was working fine, but Dr. Z said something about interactions between Zoloft and tamoxifen. Wait it out for a few weeks and see if it gets better… Thankfully, I was able to call in reinforcements, and God has given me enough to get through and mostly enjoy each day. (This weather has been amazing!)

Today I talked to Dr. B who suggested that I go for the biopsies/lumpectomy/possible radiation. It got me thinking that since a mastectomy is a final thing, I should at least try to get as much information as I can before I go there. Biopsies are no fun, but they are a piece of cake compared to surgery. I called Dr. G to see about that, and her nurse said she wanted me to come in tomorrow so we could talk about it. I also left a message with Dr. Z to see if the change in tumor type/ lack of recurrence would affect his recommendation.

I’m trying not to feel rushed or like I have to get this done immediately. Trying not to think of the plans weeks and months out that could be affected by this. It’s hard living in a state of uncertainty though.

So here we are. It’s way past my bedtime, but I wanted to share what little we know.

On a total side note – if you ever want to feel like the funniest person in the world, make up knock-knock jokes with a kindergartener.

No picking sides

March 25, 2018

One of the hardest things mentally about the last month or so has been working through my thoughts and feelings regarding traditional vs. alternative treatment. Until I recently started prescription hormone therapy, surgery had been the only traditional treatment option we’d chosen. Though I don’t think I’m particularly “crunchy”, I have always tended toward alternative options. I have always wanted to know what the root of the problem was instead of just treating the symptoms.

And as is the case whenever you go against the standard, you know people are doubting/concerned about/scared of your choices. I have struggled against the need to defend our decisions. This recurrence, and even when it was just a possibility, really challenged me in this area though. Why had we made those choices? Were they the right ones? Did the natural stuff not work?

As a side story, this is one way that I feel like God has been preparing us for this: I grew up with alternative medicine as part of my story. I had cancer as a baby, and other than me having surgery, my parents chose not to do traditional treatments. I was around a year old, and to them, the potential damage that chemo and radiation would cause was not worth their possible benefits. My mom and I spent time at Oasis of Hope, a center in Mexico, and I grew up on a very natural diet. I wasn’t supposed to survive my cancer, yet miraculously, I had. (This is a whole other amazing story that I hope to tell later.) Jonathan, however, did not have this same exposure and has had more of a “do what the doctor says” mindset.

When I got pregnant with Alida, we ended up in the office of the midwife who delivered me at home when I was a baby. She asked “So, what kind of birth do you want to have?” and we looked at each other like, “What?” I started learning as much as I could about birth and in turn shared much of it with Jonathan. I read stories of women who had no voice in their births, who doubted their body’s ability because of what they had been told, who feared the process that that we were designed for, who had so many unnecessary interventions that they lost control over the process. We decided for many reasons that if at all possible I would deliver naturally. (I did deliver all three naturally, but it’s good to point out and remind myself that each birth involved some sort of medical intervention – pitocin at the end to help get Alida out, oxygen with Farrah since her heart rate was dropping, and pitocin with Elin to get the placenta out.)

We learned two important things that have been helpful when dealing with cancer: Over the months, he would have conversations with guys he’d fly with who, upon finding out that we were planning to go natural, would tell him that we were crazy, it was impossible, etc… For one, you don’t even know me, and for two, why all the negativity?? We learned to be selective about who we shared certain things with. It’s not about being secretive, but it’s about not opening yourself up to people who you know will be negative and not support you. You can disagree and challenge, but there’s a difference.

The other thing was that it helped both of us, but especially Jonathan, see that the standard of care isn’t the only way and it’s not always the best way. Don’t get me wrong – none of us hate medicine. I’m grateful for doctors and c-sections/surgery and interventions when necessary. I just think these several years of having children naturally made it so much easier for Jonathan and I to be on the same page about my treatment.

So when I found out last summer that I had cancer, the first thing I did was research alternative treatments. I sent my info to the Oasis of Hope to see what they recommended. My sister, Christine, designated herself as my researcher and we started doing what we could to boost my immune system and fight cancer. This part is a whole other post on its own.

One major factor though was that I was coming from a place of extreme depletion in my body. In exactly four years, I had gotten pregnant 5 times, miscarried twice, given birth to and breastfed 3 children. It had been a hectic bunch of years in other ways as well, and I was in no way recovered from it. I was unable to fathom doing anything to my body that would tear it down more. And yet, that’s what the doctors were recommending. Surgery is hard enough on a healthy body, but then to immediately add all the other stuff – I just couldn’t do it.

During this time, I realized what I mentioned before – trusting God is not knowing the final outcome. Trusting Him is knowing that He will be the light to my every step. Rarely does the light shine out in the distance, but He promises it will be there one step at a time. He also promises that if we lack wisdom, we can ask God and He will give it to us generously (James 1:5).

One specific Sunday when I was despairing about the cost of the place in Mexico or something like that, we prayed this and then the next day I received a completely “random” email from someone offering me information that they “had no idea whether I was interested in or not.” I had voices from completely different parts of my life agree on specific things, and this is how I ended up at Real Health Medical with Dr. Bergeron. I knew that the circumstances of me even finding out about him could either be extremely coincidental or that it was God guiding my steps.

I went through the fall with peace that I was in the right place. I still have peace about that. I will write about my initial phase of treatment there some day, but it was good. I knew that even when I wasn’t sure about the details of the treatment, that I could have peace knowing that’s where I was supposed to be. They cared about and treated the whole of me – body, mind and spirit. And I feel healthier than I have in a long, long time. It seemed that this would be an open and shut case; I had surgery, I did the follow-up work to boost my immune system and kill any cancer that remained, and I went on my merry way. But, it’s not.

So now I find myself leaning more heavily on the traditional side of medicine and have, at times, almost felt like I’m a traitor to the natural side. But as I type it out, I realize again, that it isn’t one or the other. (Thankfully) no one is asking me to pick a side. (It actually grieves me that you can’t go to one place and have traditional and holistic/natural/functional all in one place.) My nurse, Karen, has frequently mentioned patients who are in chemo or radiation and who also come to them for support. She’s also told me about patients who are so stuck to the natural side that they won’t get a simple surgery that would solve their problem. I don’t have to choose. When Dr. B and Dr. Z recommend different hormone therapies and doses, I don’t have to sweat who is right or wrong. Instead, I can take comfort in the fact that they both believe in hormone therapy.

I went in for a vitamin C (plus some other goodies) IV this week. I do it monthly, but with the recurrence, I decided to go in early. I sat next to a sweet lady who is battling colon cancer. She has been going there for a year for immune support, and had chemo elsewhere for 6 months of that time. She said that throughout her chemo treatments, she was always able to eat and never threw up! It was so good to see firsthand the combination of traditional and alternative at work.

 

 

I thought I had already processed this, but it is obviously an ongoing work. I will see the new surgeon tomorrow at 8:30am. It’s a little scary, but it’s also time. I need to hear what she says so we can start moving forward. We continue to pray for agreement among our trusted medical people so I can have peace with the decisions we have to make.

Dr. Z, drugs and breastfeeding

March 21, 2018

We met with Dr. Z on Monday afternoon. He explained that for him, the PET scan was not to check my breast area – just to check for spread to other areas. He apologized a couple times for not making that clear since it led me to think that I was free of cancer altogether.

His recommendation is to have a mastectomy. I wasn’t surprised since during my last visit he said something along the lines of “if this comes back with more cancer, we will have to consider that your breast is trying to tell you something.” Part of his reasoning for mastectomy vs. another lumpectomy is that as you remove more and more breast tissue, (besides looking bad) you can eventually run into more complex issues like cancer getting to the chest wall. Ugh. He did say that the surgeon might recommend something else, but that is what he thinks personally.

I asked him if he would recommend removing both breasts. He said no, and in many more words (AND while acknowledging that he was being recorded), stated that he doesn’t like how ready many doctors are to remove healthy breasts without adequate risk. His demeanor about this as well as his actual response were very comforting to me since I also feel strongly about unnecessary mastectomies.

We brought up the issue of the current dynamic we have with my surgeon. Again, his response was just right – immediately recommending a surgeon he knows who is like-minded with him, thinks outside the box, is very kind, etc… He also confirmed what we had been feeling from my surgeon (“my way or the highway.”) It still feels a little weird to be quitting a doctor, but as with all the rest of this, how other people feel should not/can not be a determiner in the choices of care that I make.

I had a list of questions with me, because it’s so easy to forget when you’re in there. We talked about whether I should continue the other hormone stuff I’m doing with Dr. B (natural estrogen blocker, progesterone and testosterone) since I’ll be switching to Tamoxifen. He said for now I should stop so it doesn’t muddy the waters.

Next we talked about Zoloft. (And I’ll give you some related back story). I started taking it in February 2016 when I was diagnosed with postpartum depression. It was hard for me to do, but I’m so glad that I did. That is a story for another day. (And, just so you know, me being able to put that out in so public of a forum is a huge testament to the growth I’ve experienced over the last few years.)

When you stop breastfeeding, there is another huge hormonal shift and some women experience depression. I was hoping to avoid that by continuing to take the medicine until my hormones had stabilized (post pregnancy and breastfeeding.) I thought Elin would wean at a year like the other two had, but she was still breastfeeding last fall (at 2 years 3 months) so I was still on it. After surgery, she still nursed on the left side. It wasn’t until I met Dr. Bergeron that we quit. He told me that the hormones that stimulate milk production are stimulating activity in the breast, which was what we were trying to avoid. He also explained that at that point, battling cancer, I needed to keep all the good stuff my body could produce instead of passing it on to my child.

I went home that day and told her the doctor said we had to stop, and she did pretty well with it. It was a lot harder on me than I had expected though. I was ready to quit. I had never imagined that I would be nursing a 2+ year old child, but she’s my last child and it was a mostly sweet time for us. It forced me to be still a few times a day. And, it was so sudden. With my hormones all amok, us going into winter, and me in treatment, we all agreed that I would continue taking it. (No one needs to be fighting depression and cancer at the same time if they can help it.)

At the beginning of the year, I started feeling like I was ready to go off of it. I had been feeling stable for a while, and was starting to think I need to be able to feel more. There were times when I thought “this is really funny, I should be laughing my face off” or “I feel like I should be crying about this, but I’m not.” I’d like to know what 37 year old me is like without extra hormones or medicine. I’d like to stop worrying about tooth decay because one of its side effects is dry mouth. Things were also looking good cancer-wise, so I had hoped that with spring coming, when I got back from Haiti I would start going off it.

But alas… here we are. So Dr. Z recommended I switch to lexapro. He said it could also help with potential side effects from tamoxifen. Ugh. Taking drugs to deal with your drugs sucks. So does having cancer.

I went home with a prescription for tamoxifen and lexapro. I felt fine. We talked on the way home and agreed that none of this was really a surprise. This cancer continues to be a bigger beast than we anticipated, so we are having to fight it harder than we anticipated. It wasn’t until close to bedtime when I started reading about women who had had a mastectomy that I got really sad. I read about a woman and her husband having to mourn the loss of her breasts. It’s a big deal. You lose part of your body. And it affects both of you. It’s also a scary surgery. So I cried and wished I wasn’t dealing with this. Jonathan hugged me and comforted me and then reminded me that we don’t even know if that’s going to be my story. At this moment, I can’t be wasting energy crying over things that I don’t even know will happen.

So now, we wait to see the new surgeon. (And as I was writing this, I got an appointment with her for next Monday morning.) We continue to ask for prayer for clarity. For agreement among the doctors so I can have peace in my soul. And obviously for healing.

More later. It’s dinner time.

More

March 19, 2018

Monday before last, I met the new oncologist. Jonathan and I both really liked him. He discussed different scenarios based on what we might find in the biopsy later that week, but he was mostly in data gathering mode. He ordered blood work and a PET scan. He also said I need to switch to Tamoxifen since the hormone blocker I’m on is generally used for postmenopausal women.

There are two things that still stand out from that appointment that we really like. First, he gave me his cell phone number, and when I called/text him the next day with a question, he replied! And second, I was asking him about options for monitoring and he said, though it seems old school, one of the most important ways he monitors his patients is simply to see them and see how they are doing/feeling. It tells me he isn’t just a doctor reading lab results and not paying attention to the human behind them.

Later that week, I talked to a friend who has recently gone through a crazy, miraculous stroke and found out that she sees the same doctor who also does hematology and really likes him. She also told me that a friend who does home health sees his patients and reported that they seem to do better than a lot of other patients she sees. All encouraging things that make me feel more comfortable trusting my health to him.

On Thursday, I had the biopsy. I went into it without stress, feeling like it would just be another routine thing, but it ended up being really unpleasant. I had to wait a long time to even get started which allowed anxiety to creep in. She did the first spot and it was fine, but when she went to the second spot, it started hurting. They numbed it more, but it still hurt. The whole procedure is unpleasant – they are using big needles to go through a small incision and then have to find each spot. Once they find it, the needle goes in which is a lot of pressure and then they stick a thing in that retrieves the tissue samples. She decided to do a lot since the second spot wasn’t a cyst like she had first assumed. It reminds me of a nail gun or something. She asked if I wanted to come back to her for the results, but we agreed that she would just send them directly to the oncologist. There was also a lot of talk regarding me “not doing systemic treatment”. Yeah, I get it – you don’t approve of what I’m doing! I cried a lot that day – some for pain, some frustration, some just feeling sad that I’m having to deal with this.

The next day I had the PET scan, which comparatively speaking, is a walk in the park. For the scan, you come in with blood sugar below 100, have some kind of radioactive stuff put in your vein, drink some barium drink and then wait an hour. The scan only takes about 15-20 minutes. The weirdest part is that they told me that for the next 24 hours I would be slightly radioactive, so out of extreme caution, I shouldn’t hold or let my children sit close to me for extended periods during that time.

PET scanners work by detecting the radiation given off by a substance injected into your arm called a radiotracer as it collects in different parts of your body. In most PET scans a radiotracer called fluorodeoxyglucose (FDG) is used, which is similar to naturally occurring glucose (a type of sugar) so your body treats it in a similar way. By analysing the areas where the radiotracer does and doesn’t build up, it’s possible to work out how well certain body functions are working and identify any abnormalities. For example, a concentration of FDG in the body’s tissues can help identify cancerous cells because cancer cells use glucose at a much faster rate than normal cells. – https://www.nhs.uk/conditions/pet-scan/

I spent the rest of the weekend getting ready to go to Haiti with a medical team from our church. I had determined not to dwell on the test results since I wouldn’t know anything until I got back anyway.

On Monday afternoon when we got back from our day’s work, I got a text message from the oncologist saying “Pet scan shows no spread of cancer to other organs.” I was so relieved and happy, and shared it with everyone.

Then, on Wednesday morning, Jonathan text me to say that he had gotten a call from the surgeon’s office trying to get in touch with me. He had called back, but somehow we had failed to give permission for them to talk to him. Over the next 24 hours, I tried calling and tried not to worry why she wanted to talk to me. I thought that since the PET scan was clear then I was fine. I finally got in touch with her on Thursday morning as we were driving to the mobile clinic village. She told me that the second spot, the .5cm one that didn’t seem like a cyst, was in fact invasive ductal carcinoma. She said she had already called my oncologist and they had discussed treatment options.

I was (and still am a little) confused as to why this wouldn’t have shown up on the PET scan. I’ve had some people explain different scenarios as to why it might be. I’ll see what the doctor says today. I was also extremely disappointed to get such good news and then feel like it had been taken back. After a little bit more time, I was able to still appreciate the good news – no spread is amazing! I think as much as it sucked to be in a car driving up a mountain in a foreign country while receiving this news, it also helped me keep perspective. I have access to all the healthcare options I could want. I don’t have to walk 4 hours to see a doctor or wait a month until the next one comes to my village. I was prayed over that day by my team and the next day by the leaders in Haiti. We know that love can’t heal cancer, but it sure helps while you’re dealing with it.

Mobile clinic in Boukan Boyer, Haiti

I was able to put it out of my mind for the most part for the rest of our time in Haiti, but we always have to come back to reality. I felt unmoored yesterday as I thought about all of this. When I got the news last week, it was just 7 months after my first diagnosis. Is this something I’m going to have to deal with every 6 months? Do we need to change our approach? I don’t know if it’s going to be part of my future, but I’m understanding more and more why women choose to have their breasts removed. What about my lymph nodes? Am I going to keep getting more and more of them taken out? One of the concerns from my last surgery was that there was only a 1mm margin on the tumor. So is this growth left from that or something new? Hopefully some of these questions will be answered today and in the days ahead. I’ll try not to wait another couple weeks to update.

Good news is so much easier to share. I continually battle worrying about how my news affects others. I know it sucks. I also know that I would want to know if it were you, so have to keep sharing.

I’ll close with a reminder to myself- when I started this process, I wondered what it meant to trust God in this. What I realized is that it isn’t trusting that there will be a certain outcome – trusting God doesn’t mean we live happily ever; it’s trusting that He is with me every step, every day. I asked for the steps to be made clear and then saw pieces fall into place. I spent the fall in treatment with peace that I was where I was supposed to be. So when I wonder now if I’ve been doing the right thing, I have to remind myself of that. And as we tackle this next bit of cancer, I have to keep asking that step by step, the way would be made plain.

Mixed messages

March 2, 2018

Last time I wrote, I was getting ready to see my breast doctor after an abnormal mammogram. I spoke to Dr. Bergeron the morning of my appointment and we agreed that I would start hormone therapy. This means that I would take a pill that would affect the amount of estrogen that would be available for cancer to feed on. This was something that all the doctors I’ve seen have recommended. We have been monitoring my hormone levels and I’ve been taking something natural to deal with estrogen (my cancer feeds on estrogen), but because my estrogen levels have never been very high anyway, we hadn’t started any prescription medicine yet. Dr. Bergeron told me when I first met him that he had seen medicines like Tamoxifen (estrogen blocker) have a major impact on cancers even when the patient wasn’t doing anything else. So he said that if these spots were more cancer and I started taking something, it would “take the fire” out of it.

When I got to my surgeon’s office, I met with another doctor (possibly in training) who asked me about my treatments and what I had done since surgery. Dr. S came in and did an ultrasound to see the spots. She said she was not concerned about them, felt like they were probably associated with scar tissue, but would do a biopsy anyway.

Then she started talking to me about my type of cancer. She said that some cancers are like criminals that commit petty theft and some are evil serial killers that will kill you. She said mine was the evil one and it would take a lot of people to take it down. We had already talked about my treatment I was doing and I had told her about my test results, but she said while she believes in natural medicine, she basically doesn’t think it’s enough. I won’t go through the rest of the conversation, but she said a lot of things that were hard to hear, and we left there feeling like we had just been hit over the head with a bat. She also insisted I see an oncologist before my biopsy.

We got in the car and sat there in shock. I started crying. It was crazy. Was I going to die and not be able to see my kids grown up? Was I being foolish with my treatment? I couldn’t even be glad that she wasn’t concerned about the spots.

We left there and drove to Acworth where I had gotten a last minute appointment to have a thermography scan done. I’d been wanting to do it for a long time, but you have to wait 3 months after you have surgery. I figured it was a good time to get a baseline scan of my whole body. Also, many people doubt the efficacy of mammograms and dislike the added radiation. The mammogram I had last summer did not even detect the cancer that I could feel with my hand, so I’m glad to have more options for monitoring. (By the way, I got the thermography results and they didn’t see anything that concerned them!)

What is thermography?

Digital Infrared Thermal Imaging ‘DITI’ is a non invasive test of physiology (or function). It is a life saving procedure that can alert you and your doctor to changes in your body that may indicate early stage breast disease or other disease processes that may be developing in the body. Thermography offers the opportunity of earlier detection of breast disease than has been possible through breast self examination, doctor examination, or mammography alone. And the screening is done without any pain, no radiation, or compression!

We spent the rest of the day packing to go to China. We talked about it off and on throughout the day. I alternated between tears, numbness and confusion. I know a lot of you were waiting for news, but what do you say? “The doctor isn’t concerned about these spots but said I was going to die without chemo.” ?? Jonathan wondered what had set her off. Was she not aware that I was doing immunotherapy and this was her shock response? Had she just seen the results of my Mammaprint? I don’t know. I know she is doing her job and advising me based on her knowledge and I respect that.

Finally, that evening, we talked again and both agreed that nothing had changed since last week when I felt good about my progress. We hadn’t gotten any bad news. We already knew about my type of cancer. We are already treating it as one with high risk of recurrence. I was able to mostly let go of the fear and panic.

We went to China the next day and had a wonderful trip. It was an answer to prayers in so many ways. Jonathan and I resolved again to focus more on doing the things I need to do to be healthy – most of which we should all be doing anyway. Staying cancer-free is going to be a life long effort. I can’t just get well and then slack off. Just as the nurse Karen said, even if it takes another 35 years to come back, that will be too soon.

When we came home, it was a harsh transition back to reality. Medical bills, appointments to be made, appointments to be dreaded. It had been nice not thinking about all of this for a couple weeks. I have treatment on Monday and will meet with Dr. B. After that I will go see a different oncologist. He is supposed to be more open to alternative treatments, but he is at Emory so I have no idea what the appointment will be like. I’ll have my biopsy on Thursday morning.

One of the things I hate the most about this is that I have to be prepared for battle when I go to these appointments. This is a whole other post, but I don’t like how we do medicine in this country. I wish all my doctors could work together to provide the best treatment for me. I also hate that my choices are constantly being questioned in a critical way. In the past couple weeks, we’ve talked through the choices we’ve made so far, and I would still make the same ones again. I feel better than I’ve felt in years. I have energy. We are tackling issues that have affected me since I was a teenager like always being tired. In the fall, I was in no position physically to do anything that would further tear me down. We will continue to monitor my numbers and scans and have discussed other tests that will give us more information.

If you’re still reading this, I applaud you. Thank you for caring.

mammogram update

February 10, 2018

Yesterday I had a routine mammogram in preparation for my 6 month follow-up appointment with my surgeon. After the mammogram they have you go back and sit in the waiting area while the doctor reviews the images. It’s a little depressing sitting there with other women who you know are all a little anxious, some possibly already dealing with cancer, but I didn’t feel nervous. I was just pleased that I had time to read my book.

Then they called me back for another image. The tech told me this doctor tends to ask for more, he’s thorough, which was fine. I got a little teary, but I think I was just starting to feel sorry for myself for being at least 20 years younger than all the other women I was waiting with. (“I’m too young to be dealing with this.”)

Then I had to wait some more. Next she said he wanted to do an ultrasound. When I went in the room for the ultrasound, I got really upset – again feeling sorry for myself for what I’m dealing with, for all the times I’ve been on an ultrasound table scared to see what they wouldn’t or would find, but also starting to feel scared that I’m starting this whole cancer business over again.

The technician spent a lot of time focusing on the 3 o’clock part of my breast which added to my nervousness – are we dealing with something new? My fibroadenoma was around 8 o’clock and the tumor was at 6 o’clock. It turned out that she just wasn’t able to find what they had pointed out, so she brought the doctor in. Between them, they spotted what looked like a 1cm cyst and another small spot.

He recommended that we move my appointment up with my doctor (I was supposed to see her on 2/26) since they had found something suspicious. I was really upset leaving the mammogram place. I had been wondering lately if I wasn’t taking this seriously enough, but I don’t know how else to be. I can’t make myself be afraid (nor should I). When we last checked it looked like all the cancer was gone, and the numbers during my latest blood work seemed to confirm that. I feel great – better than ever just about. Plus, I don’t actually have time to worry about whether it will come back. Yet this news was such a shock to me.

During all the waiting, I tried to corral my thoughts. I don’t think there’s anything wrong with being afraid, but I can’t let it run me over. I started thinking through Psalm 23 just to give myself something to focus on. The part that says “he prepares a table before me in the presence of my enemies” made me think, who is my enemy? Right now, cancer is my enemy. Yet God is preparing for me to sit down and eat, something normal and necessary, even when the enemy is right in my face. Not running or hiding. “My cup runs over.” Yes it does. I’ve experienced so much goodness in my life. “Surely goodness and mercy will follow me all the days of my life (regardless of how many or few) and I will dwell in the house of the Lord forever.”

I went to my surgeon’s office and was greeted by the receptionist who immediately came outside into the waiting area and hugged me and began to pray for me. I don’t even know how she knew I would be receptive and appreciative of that, but I was thankful for her in that moment. They scheduled me first thing Monday and gave me a slightly longer time slot in case the doctor decided we could/should biopsy then. I also spoke to two people immediately following this who told me about their multiple biopsies that didn’t bring back bad news which was really encouraging since it is now easy for me to assume the worst.

Just the day before, I had gone in for my monthly treatment at Real Health Medical. The cancer nurse, Karen, had mentioned being really concerned when I told her I wasn’t feeling well in January. I asked her to tell me exactly what her concerns were. Like I said earlier, I was wondering if I was pushing the “that was easy” button a little too hard on this cancer business. She explained how they believe that because of my history with cancer, it seems that my immune system tends not to do its job. We are finally get it to respond as it should, but if I get sick, my immune system can get distracted fighting a cold and not be able to deal with cancer cells. This is the totally dumbed down version of what’s going on, but I get the point. We talked about precautions I need to take and it was a good kick in the pants for me.

It’s hard for me to admit that I have limitations or need to take any special precautions. I want to be able to do all the things, but that isn’t my reality. My brother Peter made the perfect comparison between this and my dad being a Type 1 diabetic his whole life. He is living a long and healthy life, but it’s because he is vigilant about taking care of himself. He can’t just decide that he doesn’t want to take his insulin or wants to eat ice cream for days and think it’s going to serve him well. I guess anyone who lives with a sickness would be familiar with this mindset. It sucks, but it’s better than the alternative.

So now I wait. I’ve been in touch with Karen and I should hear from Dr. Bergeron this weekend to see what he thinks. Monday morning I’ll see Dr. S (my surgeon at The Breast Center) and see what she thinks. And then after that we’ll go to China and have to wait til I get back to find out more. I’m trusting that this is nothing, and if it isn’t, I believe that God will make our steps plain as He has done up to this point. I feel better today and haven’t felt like crying since yesterday afternoon, but know that I will have to work to keep the worry gremlins away.

That’s it for now. A hot mess of a real-time update.

Good test results

December 15, 2017

After 8 weeks of immunotherapy, I had blood work done and got the results this week. Before I started, we did extensive testing – hormones, cancer marker, vitamin levels, etc… to have a baseline. At that point, a month after having a lumpectomy and lymph nodes removed, my cancer marker was 27. (This article explains more about the cancer marker CA 27.29.) Like many of the tests available, it’s not a guarantee of anything, but it seems like it’s a good indicator. The normal range is below 38, so we started great, and now it’s down to 21!

I was relieved when I got this news, grateful, thanking Jesus, but I have struggled to be excited. I think part of it is my general place in life right now, part is just that I’m over dealing with cancer, and part is that I know that keeping cancer away will be somewhat of a lifelong journey. I’ve had a swollen lymph node for about 6 weeks and we have been treating it in various ways. I was stressed for a while that it was more cancer, but about two weeks ago, I had several conversations that helped me have peace about that. It didn’t make sense logically that it would be cancer since I had a clean PET scan in October. Obviously, nothing is impossible, but based on the type of cancer I have/had, it was highly unlikely. So maybe the fact that I already felt good about my progress has diminished my enthusiasm over good results?

I have a new protocol now – phase 2, which has me only going to the doctor once a month and only for IVs (instead of every week for multiple treatments)! We have modified the arsenal of supplements I take and will be addressing some hormonal things. We will test again in 3 months, and that will also be around the time I have my next mammogram and appointment with my surgeon. It’s hard to believe that it’s just been 4 months since I was diagnosed.

There’s always more to say, so much that I have yet to write about, but I need to let you know that there is reason for rejoicing. I’m so grateful for all the love and support and prayers we have and continue to receive. Thanks be to God.

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