Preparing for Treatment

[picapp align=”right” wrap=”true” link=”term=IV+medicine&iid=5154639″ src=”9/9/e/6/close_up_of_8570.jpg?adImageId=8888159&imageId=5154639″ width=”234″ height=”233″ /]Somehow, I managed to convince myself that we were ready for Dana’s first chemo treatment.  She and I read all of the materials provided by the medical oncologist, and I think we had a decent handle on the potential side effects, etc. But I have to say, there was nothing quite as sobering as seeing the Adriamycin in all its red glory (visualize red Kool-Aid) steadily advancing up the I.V. line and into the port in Dana’s chest.

Dana’s looking at 6 months of ACT therapy with a treatment every other week.  To be honest, I’ve heard so many different stories–I’m not quite sure what to expect in terms of symptoms.  I know we were hopeful that the first treatment or two might be a little lighter on the side effects…Then again, I’ve also heard that the first will be pretty indicative of the second, third, etc. It was tough though–for what it’s worth, let me share how the first week went for her.

She got her first chemo on a Wednesday.  It took about an hour and a half through her port.  An hour prior, we dutifully applied the Emla Cream to the skin above her port and covered it with Saran Wrap to allow it to sink in (my two cents, really slather it on…it numbs the site well and you’re going to be a little surprised by the size of the needle they insert.  Dana felt nothing though…I don’t want to alarm anyone).  They began with some saline and the ani-nauseals.  The Adriamycin came later, and this was administered through two large syringes (rather than a drip bag) that the nurse depressed slowly while sitting at her side.

Wednesday and Thursday were pretty normal.  Thursday night…Dana could barely sleep…she got two hours at a stretch…tops.  This was, we think, due to the steroids that are given to potentiate the effects of the anti-nauseals.  Other symptoms crept in after that…lack of appetite…constipation…a general feeling of fatigue coupled with a racing mind and overall sense of restlessness.  Saturday and Sunday were the worst days.  The anti-nauseals wore off at this point and the steroids had been flushed from her system, causing something of a “crash.”  Those two days were marked by severe fatigue, unlike anything I’ve seen her go through before.  And she had a lot of nausea that she was able to control with the backup meds.  Depression was the other predominant symptom.  Dana’s a very strong person who’s not prone to emotional swings, but she was very, very, very depressed and I’ll just leave it at that.  Again, she had no appetite and had difficulty sleeping, but these lessened as the weekend wore on.

By Monday, she was on the upswing.  Still, she had difficulty doing routine things and had to rest frequently.  I’d say it was really Wednesday (a full week) before she was back to normal.

For the caregivers out there–take everything you can off her hands.   I mention the twins in our “About” page…they need a lot of distraction during a weekend at home.  Think ahead–a little planning goes a loooong way in circumstances like these.  And try to keep her occupied with something that she enjoys.  For me, this was a great time to dig up a few movies neither of us had seen since college…

Frankly, I don’t know whether to expect that things will get worse before they get better.  I don’t know whether to expect that this first treatment experience will be indicative of the others (and I’d love to hear from anyone who’s gone through it).  BUT, I DO know that we survived it and you will too.  One down, eleven more to go!!  The other thing we’re bracing for is the hair loss, which we’ve been led to believe will come within the next week or so…

[picapp align=”left” wrap=”true” link=”term=tote&iid=177901″ src=”0174/befb2f36-9374-40fc-8b66-41a6448af532.jpg?adImageId=8888645&imageId=177901″ width=”234″ height=”186″ /]  Okay, so it may not actually make chemo any easier, but it may help make it a bit more bearable, and if nothing else, it will help her pass the time.  I’ve heard a w-i-d-e variety of estimates when it comes to the average length of a chemo treatment, and I think it really can vary quite a bit depending on the facility, the medications, and whether or not it’s being delivered through a port.  Suffice to say, she’ll be spending quite a bit of time in a chair, albeit a relatively comfy one.  Here’s what I pulled together for her “chemo bag:”

1. A packable, soft blanket.  I’ve heard some people say the treatment itself can leave them with chills, and while that hasn’t been Dana’s experience so far, the rooms themselves can be a bit chilly.  Besides…a blanket just feels good.

2. A travel pillow.  By this I mean the kind that fits around the back of your neck and allows you drift off in almost any position.  Chances are she’ll be in some sort of recliner, but they’re not that comfortable–and this helps.

3. A thermos.  Sure, she’ll be getting plenty of fluids through her IV, but there’s nothing wrong with a little hot tea (or water, juice etc.).

4. A DVD player.  Keep it light…and bring headphones🙂.

5. A portable lap desk.  For the DVD player, crossword, whatever she passes the time with.

6. A magazine.  I gave Dana a subscription to a travel magazine and told her to pick the place she wants to go to celebrate when the treatments are over.

7.  Hand lotion.  Unscented…Dana’s already developed a strong sensitivity to smells…chances are that others will too.

And believe it or not, all of it fit in a pretty normal sized tote!  Any favorite things you’ve taken to pass the time during treatment?

Understanding Her Diagnosis

As I mentioned in a previous post, information about Dana’s cancer diagnosis came out in stages. As information becomes available to you, the critical document you’re looking for is the final pathology report following her lumpectomy or mastectomy. Initially, we were led to believe that the report would be completed within about a week of surgery–for us, the process took about two weeks. First, we were told that the margins were clean and that there was no lymph node involvement (we were thrilled). [picapp align=”left” wrap=”true” link=”term=stethoscope&iid=5105242″ src=”3/3/2/c/Stethoscope_close_up_48e4.jpg?adImageId=8767401&imageId=5105242″ width=”234″ height=”234″ /] We believed that this meant two things, 1) That her cancer had been caught early and was not aggressive, and 2) that the “clean” margins meant that no follow up surgery would be required. Neither turned out to be quite true. She did have an extremely aggressive form of cancer, and she did require additional surgery to widen the margin of clean tissue around the original lumpectomy site.

So what are the key things to look for in the pathology report when it comes? I won’t pretend to be an authoritative source of information on this–there are a number of good resources out there that can help you understand each of the various elements of the diagnosis and their implications. But I can share what I’ve learned, and there are a few key things you’ll want to understand. First is the nature and size of the tumor and whether or not the cancer has spread into the lymph nodes. This information will guide you to understanding the stage of her tumor. Dana had an infiltrating duct carcinoma that was Stage 1 and Node Negative (T1b, N0). As I mentioned above, this information alone can be pretty encouraging–it generally means that the tumor was early stage and had not spread into the lymph nodes (her sentinel node was removed during her lumpectomy and tested). And it used to be that these factors significantly influenced the course of treatment that followed.

Today, we’re fortunate enough to have benefited from the hard work of a variety of dedicated researchers, and we have treatment options that are targeted based upon the hormone receptor status of the tumor. The tumor may be receptive to (or its growth may be fueled by) a number of hormones and proteins that are naturally produced in her body, including Estrogen, Progesterone, and HER2 (human epidermal growth factor receptor 2). And there are varying treatments that have been developed specifically to target those types of tumors (e.g. Tamoxifen for Estrogen positive tumors)–essentially allowing her oncologists to develop a course of treatment that will be most effective for her based upon her tumor characteristics. This is where the facts of Dana’s case took a turn for the worse. She has what is known as “Triple Negative Breast Cancer,” or “TNBC,” which simply means that her tumor was not Estrogen, Progesterone or HER2 positive. It also, for the time being, means that there are no mature therapies for her beyond an aggressive, dose-dense chemotherapy regimen. So while her tumor was caught early, it was the most aggressive kind–triple negative, grade 3 with a KI-67 percentage that was classified as High (both grade and KI-67 score are indicators of how rapidly the cancer cells were dividing…see an overview of this characteristic at the “tumor characteristics” link above), basal-like and poorly differentiated. There are a number of great sites dedicated to TNBC, and there are some recent studies that are worth reading. I’ve begun to develop a list on the resources page, but again, it is a work in progress–please feel free to add to it in the comments.

So, as more facts slowly emerged about Dana’s tumor, we experienced a bit of an emotional roller coaster. To you, the caregiver, I would say–stay focused on the facts. Again, avoid speculation, and educate yourself on the various elements of tumor characteristics, potential treatment options, etc. And understand that you may in for a bit of a wait on the pathology report–regardless of what her surgeon says.

On Waiting…

[picapp align=”right” wrap=”true” link=”term=clock+waiting&iid=5271221″ src=”6/e/9/d/portrait_of_a_611b.jpg?adImageId=8531334&imageId=5271221″ width=”234″ height=”234″ /]

As I write this, I’m sitting in a waiting room while Dana is undergoing her second surgery–this time to take some additional tissue (the result of not getting enough of a margin on the first lumpectomy) and to insert the mediport she’ll need for her chemotherapy.

It’s important to understand that regardless of the diagnosis, regardless of the required surgery and ultimate treatment, you are going to be doing a LOT of waiting!  For us, the hardest stretch was waiting for the pathology report(s).  After Dana’s lumpectomy, we were told that she had “clean” margins and that things looked generally good.  At first, it seemed we had caught her cancer early and that there was no lymph node involvement; so there was nothing much to fear.   Her surgeon estimated that the pathology report would be finalized within a week of surgery.  It wasn’t.  The information came out in trickles through a series of partial and amended reports…with the news getting worse each time.  In the interim, we struggled to make sense of the information we were receiving and filled the void with speculation and interpretations of the future that were based on a subset of the facts.

And herein lies my point–there are a lot of things you can do with your time while waiting…choose carefully.  As tempting as it is, one of the worst things you can do is surf the web indiscriminately.  There are wide variety of stories out there–you’ll easily find some that seem to fit the rough outline of yours–and you’ll easily find reason to worry.  IF you must surf for information, stick to sites with some scientific rigor underlying the information your consuming.  There are some great resources out there–focus on educating yourself.  I’ve listed a few good sites on the resources page, but there are many others.  I found my best information through downloading journal articles, etc. That said, even good information can lead you down the wrong path if you have limited facts.

Instead, take it one day at a time.  Understand in advance that you’re not always going to get the answers as quickly as you’d like.  Worse, you’re going to get some answers without having been given the means to interpret them (e.g. you might get pathology results weeks before you’re able to discuss the implications with an oncologist).  Try to focus on what you do know and try, try, try to avoid speculation.  You and she will also hear countless stories of benign tumors, lumpectomies, mastectomies, chemotherapy and all manner of close calls, good doctors, advice on second opinions, etc. Take it with a grain of salt–they’re just trying to help.  Great Aunt Edna’s story is just that–Great Aunt Edna’s story… What we know about cancer, its treatment, and survival is changing fairly rapidly–it’s a different experience today than it was even a few short years ago.

Most of all, focus on her.  Spend time together.  Talk.  Acknowledge her fears and yours, and wait…together.

[picapp align=”left” wrap=”true” link=”term=couple+kitchen&iid=5108531″ src=”6/d/5/f/Laptop_in_kitchen_b1fc.jpg?adImageId=8482242&imageId=5108531″ width=”234″ height=”173″ /]

Let’s face it, there are a lot of people who “expect” to hear updates on her progress.  And there are some whom you’ve told that may struggle with whether or not to ask you how she’s doing or what’s going on.  Does everyone you’re sharing this with always need to be in the loop? Who’s responsibility is that?  Should you or she be responsible for pushing information out to all of your family and friends?

Let me start by acknowledging that the decision on whom to tell is a very personal one–I don’t want to presume to offer any advice on that point. Dana and I chose to keep it close at first and told only those that needed to know (e.g. family, friends from whom we needed support, teachers, and supervisors at work).  Eventually, that circle spread to include a variety of friends, coworkers and family members–the list grew longer as the disease and its treatment impacted more and more of our daily lives.

One of the great challenges of this whole experience thus far has been the speed with which events unfold.  I think I mentioned previously–it was only a matter of days from discovery, to testing, and it was a matter of weeks from discovery to surgery (to consults…more surgery…and the start of treatment).  Dana experienced a variety of conflicting emotions through it all.  One was guilt…at burdening others with the news.  She also felt obligated to keep them informed but was sensitive to the idea that they might perceive her updates as a play for sympathy.   And when certain friends stopped asking how things were going, she sometimes got her feelings hurt.

From my perspective, it is important that you find a way to share the experience with friends and loved ones, BUT this shouldn’t be another burden.  After all, repeatedly talking about what the surgeon said or when the pathology results will come in (or why they’re late) can be a real drain on her emotionally (and you for that matter).  As the caretaker–you can lighten this load to some extent.  What worked for me in this scenario was to push info to the immediate family and let others ask for updates.  Not everyone will want to know all the details…make sure they know that you’re open to sharing information with them, but that they should ask from time to time. You’re both going to have enough on your plate–you don’t need to be constantly running down the list of friends and family members in need of an update.

And, of course, there are a variety of ways to push information out.  Depending on your comfort level–starting a blog is a great way to go.  You don’t need to share it with the world–you can lock it down and invite only friends and family to view it.  Aside from WordPress and the other blogging platforms, CaringBridge offers a free site designed specifically for this purpose.  Do what you’re comfortable with–and don’t feel like you need to spend a ton of time on it.

In short, don’t stress too much about the decision–tell whomever you want to tell; let them ask for updates; find a way to keep your closest friends and family in the loop on the important stuff; and don’t let the sharing of the experience become an obligation/duty or a source of additional emotional stress for you or her.  The people you’re ultimately going to rely on for help will get this approach.  Lean on them–they’re going to be around for a long time.

The Second Line of Defense

Dana found her lump by accident. I was returning home from a business trip, and while I was minutes away from the house, she called on my cell to say, “I’ve got something to tell you and I can’t wait until you get home…” That was the beginning.

She awoke that morning with her hand positioned in just the right way to be able to feel a pea-sized lump in her breast. To be honest, it was difficult to locate, unfortunately, just one week later it was impossible to miss.

That morning she contemplated, however briefly, a “wait and see” approach–after all it was around the time of her period and it may have been nothing. Fortunately, we decided to be a bit more proactive. If there’s one thing you should take away from this post, it is that no lump is too small to get checked out. Within a day, Dana was at her OB/GYN…and shortly after she was sent for a mammogram and an ultrasound.

I think the normal progression under circumstances like these would be screening (mammogram and possibly an ultrasound if needed) followed by a needle biopsy. For us, it worked a little differently. Her radiologist consulted with her OB and they agreed within the day to recommend she see a thoracic surgeon.

Dana took her films to the breast surgeon, who, upon reviewing them, minced no words–she said that based upon her 30 years of experience, Dana’s tumor was malignant. She did a needle biopsy on the spot, and the results would later confirm that it was, indeed, cancer. The surgery was scheduled, and all of these events transpired within the space of a few weeks.

If there’s one thing about the whole process, it’s that it moves very quickly. You and your significant other will find yourself facing choices regarding surgery long before the potential implications of what your facing have begun to sink in. To this day, I still wonder about how long this might have gone undetected had we waited for her next routine mammogram–remember, the first line of defense is her own self exam. In Dana’s case, we were very, very fortunate to have caught this as early as we did.  Early detection is particularly important for younger women who may not have started a regular screening regimen–check out a good post on this subject here.

It’s funny you should ask–I’ve been wondering that myself.

Dana and I decided on a whim that this might be a good idea–for a number of reasons.  It occurred to us this morning after she had inadvertently stumbled across a blog by another woman of similar age who had just come through treatment for breast cancer herself.  The blog gave her a lot of good information–even about the more mundane aspects of the experience.  It helped her answer questions like, “What does a port look like?” and “How long does a chemo treatment last?”  But even more, it was the idea that there was someone else out there with the same fears and questions who had come through the whole experience pretty much intact.

From a selfish perspective, it helps me to write as I work through this, and I also hope that sharing the experience in a forum like this will bring me in touch with others who have similar experiences to share.  But more than that, my hope is that you’ll find something here that helps you, the caregiver, spouse, significant other, sort through some of what you’re experiencing.