A Little Detour

WHEN IT RAINS, IT POURS

I had a two-day hospital stay this week. It was not fun but, then again, what hospital stay is? To explain what happened, I have to backtrack a little. Prior to my breast cancer diagnosis, I was on the verge of having an unrelated surgical issue fixed. Long story short, I had a prior abdominal surgery with a mesh repair that twice herniated or "failed," and needed a new repair/reconstruction. Since I'd also been having problems with a pesky uterine fibroid that causes a lot of bleeding, the plan was to do a hysterectomy at the same time. Getting two surgeons' schedules coordinated and planning the particulars had taken a while, but we had gotten to the point of pre-operative testing. That all went fine, and the surgery was scheduled for the following Monday (early May). However, the very next day I got my breast cancer diagnosis. The doctors conferenced and decided the abdomen repair and hysterectomy could wait. I had to start chemo and focus on the breast cancer first.

I had been on a medication to control my bleeding since last October, but about two weeks after my first chemo treatment, the bleeding stopped. The onco. nurse practitioner thought perhaps chemo had triggered menopause, and that I could try discontinuing the medicine. Fateful decision...because a few days later the bleeding was back, and by last Thursday it was getting heavier by the hour. I called the OB/GYN who was going to do my hysterectomy, and he suggested trying to go a few more days without the medicine. 

This problem kept me up most of Friday night and all Saturday night, and by the crack of dawn Sunday I knew I needed to head to the ER. UGH. What a way for my husband to start off Father's Day. 

The triage nurse said to give her the short story, and then the doctor would want the long story. So I told her (having been through this twice already) that I was having trouble breathing, and was pretty sure I needed a transfusion. If you've ever had a problem with heavy/extended bleeding, you may know that when your red blood count/hematocrit/hemoglobin get low, the heart has to work really hard to circulate blood and oxygen to all the body systems. (As if this post is not already boring enough, there is an anatomy lesson for you. Hopefully it's correct!) The result can be shortness of breath and a lot of tightness in the chest. 

So we get to the ER, finally to an exam room and past the preliminaries, and the nurse was ready to start an IV. I thought it would be a good idea to use the restroom first. I walked the 20 feet and was so short of breath I had to rest in there for about 10 minutes. Then came out, walked about five feet, and absolutely could not breathe. In a total panic, I looked all around until I saw someone in medical attire and said "I can't breathe!"  He may or may not have worked for the hospital (to this day I don't know!), but he did try to help me walk back to the room. Instead, I thought it would be a better idea to sit down on the floor. ;)) Someone eventually got a wheelchair and helped me back to the bed. 

My initial blood counts came back only on the low side of normal, but the attending physician felt my symptoms spoke for themselves and decided to admit me. Sometimes in cases of rapid blood loss, the blood counts take a day or so to read abnormal. 

My biggest concern over this whole episode was that my third chemo treatment is scheduled for this coming Friday, and I didn't want anything to stand in the way of that treatment. 

As Sunday wore on, I felt anxious that nothing was being done to (a) stabilize the bleeding and/or (b) bring my blood counts up. My blood pressure was also pretty low. The bleeding was getting so far beyond anything I had experienced that I felt a little panicky. But the OB/GYN resident had conferred with the team and they felt that doing a D and C at 9 in the morning would stem the blood flow and we could go from there. Finally, though, I did fall asleep. When I woke up, I knew I was overdue to get into the bathroom and take care of everything. I started to get up and nearly collapsed. It took just about everything I had in me to fall back on the bed, then search around frantically for the call button. Finally pushed it...and though it seemed like an eternity the nurse came in within a minute or two. "I need help!" I shrieked. She took one look at my ghostly gray face and said "you're not getting up." 

I'm going to skip over what happened over the next few minutes to spare you the graphic details, but by the time I got settled back in the bed it was about 4:30 AM. The nurse came back in to tell me I was going down immediately for an emergency D and C. My blood pressure at that point was something like 63 over 29, and I was scared to death. If the D and C did not work, then it would be an emergency hysterectomy. Wow...

We had to get security up to my room to check in my belongings -- I was wearing my wedding rings and had my purse with me, not having known I'd be admitted when I first showed up at the ER. This was a "Who's On First" thing that wasted about 45 minutes. Probably would have even been funny on a different day but. NOT. 

So, the theory behind the D and C was that my endometrial lining was thickened and bleeding, and if they cleared it out, the bleeding would be minimal and in control. We could re-start the medication and things would return to normal. Thankfully, phew, it worked. 

Then things started to happen a lot quicker. My updated blood counts were now coming back from the evening blood draw. Hemoglobin was in the 6 range, which is pretty doggone bad. SO - now I would be getting a few units of blood. Wait a minute - did I mention that the first thing I said when I got there was that I needed a transfusion?!

I ended up getting six units of blood. If I add that to the two units I got back in October, I now have up to nine different peoples' blood in my body (including my own). Haha...maybe some of those can influence my body to not have so many medical problems!

By midday Tuesday, my blood counts were getting back to normal and I managed to get discharged that afternoon. My hematologist even confirmed that my chemo should be able to take place as scheduled on Friday. So that was quite an adventure over a 48-hour period, but I'm glad it's over and I'm back home. I feel pretty good now! 


P.S. Can anyone tell me why hospital food is SO BAD?


P.P.S. We're doing a re-do of Father's Day next Sunday.

Hair Today, Gone Tomorrow

FIRST THINGS FIRST
A friend posted the following question on her Facebook status this morning: 



"Based in your own personal experience, is the world full of selfish people? Is anyone going out of their way to make your life easier, better, etc.?"

It's a great question, and I'm not sure how I would have answered it a few months ago. Today, however, I can honestly say that in my time of need, I've experienced a remarkable affirmation of my faith in the people who surround me. I admire and appreciate the way that so many of them have stepped up incrementally -- friends have become good friends, good friends have become great friends, and so on. People I don't get to interact with very often have gone out of their way to express their support and willingness to help. And my family - PRICELESS. But, what's cancer got to do with it?


Pardon me while I pontificate for a second. (Actually, pontificating doesn't suit me so I'm just guessing.) During the many "normal" phases of our lives, the times that are relatively uneventful, maybe we just assume that our life's cast of characters are plugging along just as we are. Maybe that helpful, selfless side of ourselves only comes to the surface when we become aware of a need for it. Whatever the case, seeing this side of people is such a beautiful thing. I'm certain that it gives a measurable boost to the medicinal side of treatment. Don't you wish they could bottle it?!


HAIR TODAY, GONE TOMORROW
As I mentioned a few posts ago, the thing many people fear most in the cancer treatment process is losing their hair. I felt pretty "flip" about it at the start of chemo, knowing that I will take what comes my way in stride. (As long as the treatment works...) However, as the time grew near, my emotions went through some unexpected peaks and valleys. I guess losing a "body part" that has always been with me necessitated a bit of a mourning process along with everything else.

The caregivers had mentioned the hair loss would start around day 12 - 18, and would occur fairly quickly. Right on cue, early last week I was noticing an increase in the amount of hair in my brush. Within a day or two, that had roughly tripled and I could run a hand through my hair and come out with a few dozen hairs. That wasn't so bad -- I just wanted the bulk of it to "stick" until at least Friday, when my little sister arrived for a visit. I'd promised her she could shave my head, and that we'd try to make it fun!

I tried not washing or brushing my hair Thursday or Friday, but did so Saturday morning. Lots o' fallout, but it still looked okay to hit the hometown spots on my sister's visiting list, plus a pedicure. Nobody looked at me sideways, and believe me I was watching for that. ;)

But she would be leaving Sunday after lunch. That morning, I thought I'd brush thoroughly and get out all the hair that was loose. After barely touching the brush to my scalp and pulling away a whole BUNDLE of hair, I felt a little sick to my stomach. Decided we'd better go straight for the clippers. 

We got all set up out on the back porch for the deed. Laughed and laughed as my sister first gave me a handy Dorothy Hamill cut, much like the one I had in sixth grade. We decided she missed her calling, and may want to visit beauty school if her gig as a CPA doesn't work out. My husband was taking pictures of this most auspicious occasion. Next came the clippers, and 20 minutes later, I was bald! If any of the neighbors happened to see us, I'd love to know what they were thinking. As for me, I felt a bit unsure of my feelings, although there was a certain liberation in not having to do any drying or styling after my shower. 

As a finale, we had a little fashion show of hats and wraps I could wear, deciding on a straw beach hat over a green bandana to wear for a birthday party later in the day.  

One funny endnote - I was reading through message boards online, looking for tips on various cancer / treatment-related topics. Someone asked how to get the stubble out once the head is shaved. The suggestion - giggle now - an adhesive lint roller!! 

Also, once I get the courage up to look at the pics my husband took, I'll try to post some of them so you can get a gander at my bare melon. As always, your feedback and suggestions are welcome!

Side Effects (?)

Ten Days After Chemo #1
The mood of the last week and a half has been mostly "wait and see," as I assess what the effects of chemo are to this point. No new developments as far as doctor visits or test results, so it appears things are settling down a bit (a good thing). So, WARNING, this entry could be a little boring as I can't think of anything terribly witty to say.


For the first few days after the treatment, I felt a little queasy. Just slightly -- as though if I weren't looking for it, I might have felt fine. I have a prescription for nausea, but quickly discovered that taking it caused a whole new concern...one that would require a steady stream of stool softeners or perhaps some Miralax. Decided I'd rather be a little nauseous and save the drugs for if/when it gets really bad. As the week wore on, the queasiness subsided and I felt more normal than anything else.


Today is day #10, and there are a few newer developments. First, mouth sores. More specifically, just one so far but it's in a terrible place -- inside my lower lip, down in the crease. Second, headaches. This started a few nights ago, when I woke up at 12:30 AM with what was probably the worst headache of my life. I took two Tylenols and a flexeril (and repeated two or three times), but it raged on for the better part of two days. Phew, finally feeling better now. 


Yesterday morning, I noticed that one of my fingernails looks like it's pulling away from the nail bed. Not so unusual, but by the end of the day four or five nails looked like this. A little Googling didn't yield any link between this and my specific type of chemo, so I'll just have to keep my eyes and ears open until my next visit with the oncologist. On the bright side, this gave me an excuse to try out the press-on french manicure my friend Celia recommended, and it looks pretty good! (Photo below. Assuming I linked it correctly, click on it to see the product.) Thanks Celia!

Broadway Nails Press-On Manicure!

Last but not least, looks like I'm at the very start of the shedding of my hair. Hubby likes the ceiling fan on at night, which sometimes is annoying because it blows my hair into my face. Usually I just brush it away and go back to sleep, but last night I became aware that both times this happened, I ended up with a few hairs in my hand. I've refrained from brushing today. I'm trying to keep my hair for just THREE MORE DAYS because my sister is coming to visit, and I promised her she could shave my head! We're going to try and have a little fun with it, and get some good pics. 


To summarize my experience with chemo thus far: even with headaches, mild queasiness, mouth sores, fingernail issues and *gulp* the HAIR, it has been not even close to as bad as I was afraid it would be. I've been warned that it gets worse, but I'm going to opt for an attitude of cautious optimism! 

Kicking Cancer's A**, Part One

The First Chemo Treatment
(WARNING: If I get frustrated with my condition in the future, the gloves will come off and I won't euphemize the word "A**.")


I visited with my oncologist a few days before my first scheduled treatment. Here's a synopsis of what I learned: I will have a total of eight chemotherapy treatments spread over 24 weeks. The protocol is called "ACT," which consists of four treatments of adriamycin (A) plus cytoxan (C), and then four treatments of taxotere (T). Then surgery, then radiation. Based on where we are after all that, maybe more chemo. I'm going for...NOT.


I spent a good deal of time with the nurse going over exactly what would happen, side effects I might have, etc. The list of side effects is pretty wide-ranging, including:

• Fatigue
• Hair loss (all body hair falls out over approximately a 48-hour period, 2 - 3 weeks after first treatment. YOW!)
• Nausea
• Lowered blood counts (risk of infection)
• Menopause
• Diarrhea, constipation, heartburn
• Bladder irritation
• Taste/smell changes
• Nose sores, mouth sores
• Dry skin and nails

I left the office that day with prescriptions for (a) an anti-nausea tablet called compazine and (b) a wig (because insurance will pay for all or part of a wig). Do you think I should get a wig? At first I was not going to, because I noticed that most of the younger patients I've seen at the cancer center just wear hats. But then the practical side of me kicked in, and thought it might be fun to get a super-long blond wig a'la Kim Zolciak. Heck, I might even get use out of that AFTER cancer.


My appointment for chemo was just a few days later. I was SO nervous. First, my husband and I got settled in our "suite," which consisted of a small room and a bathroom shared with the next suite. There was an awesome chair, kind of like the special pedicure chairs at the nail salon. A TV with movies, shows and games. And we were invited to help ourselves to sandwiches, snacks and drinks in a nearby room. God bless the hospital for making things so comfy. 


I was especially anxious about getting the IV. The oncologist and I had agreed that if my veins were problematic in this process, I would have to get a mediport in my chest. The problem was, my veins HAD been uncooperative in recent months, after a number of unrelated health issues and hospital stays. Like the rest of us, they can only take so much! The best hint I'd gotten was to be very well-hydrated at IV time. So believe you me, I was JUICED. 


The nurse gave me an ativan (for anxiety and also used for nausea) before getting started. She asked me what my biggest fear is about "all this." I replied, "that it won't work." I figured that's probably what everyone says, but to the contrary most folks initially most fear losing their hair. I can deal with the hair issue -- I can deal with just about anything, as long as the treatment works as expected. I've got a lot of years left to live.


Then starting the IV -- hooray, she got it on the second try! After an IV flush with saline (to make sure it would hold up), I got a drip of aloxi (anti-nausea) before the chemo meds. Then the adriamycin. Three very large syringes of it, injected into the IV line bit by bit. They have to watch this one closely, because if for some reason it drips on the skin, it can burn the skin and leave serious damage. The other fun fact about it is that it goes in red, and comes OUT red. I'm glad they told me ahead of time. ;) Next I got the cytoxan, which goes in pretty slowly. The nurse warned me that I might get funny sensations in my nose with this one, and I did get them about ten minutes in. It was a burning feeling that was a little uncomfortable, but not a big deal. Then the cytoxan bag was empty, and I got the last infusion -- dexamethasone (a cortisone), for (GUESS WHAT?) preventing nausea.


All in all, this process took about three hours. It really wasn't that unpleasant, other than the couple of times I looked at the IV line and realized it was putting poison in my body. All for a good cause, though, all for a good cause. Plus, I ended up getting chemo and Oreos on the same day!


NEXT ENTRY: The First Week Post-Chemo

It Has Become Undeniably REAL

Telling the Family
Of course, I told my husband first. As soon as I hung up the phone with the doctor, I called him. A bit later, I thought to apologize for dropping it on him like that, in the middle of a work day. But I guess there is no "good" time for such news. He called a few times before coming home that day, with questions and reassurance for me. I knew he would be strong and supportive, just as he has been in the past. I'm so blessed and thankful for that.


I had a huge amount of anxiety over telling the rest of my family I have cancer, fearing it would be the worst part of the whole ordeal. First, they have been through so much with me in the past three years, supporting me all the way, and it felt very selfish to pile on a whole new issue. Second, my parents and siblings have their own struggles. Particularly my mom and dad, who have been knee-deep in my mother's cancer treatments for several years. I always appreciate their caring and concern, but it needs to be about them sometimes, too. 


Ultimately, I decided to tell my parents first. I sat on the couch that morning for about 90 minutes, giving myself a pep talk about remaining calm and upbeat. (In situations like this, isn't it so tempting to dissolve and cry like their little girl all over again?) Finally, I picked up the phone and dialed. After making small talk with Mom for a few minutes, I told her I had news and that it would be easier if Dad got on the phone at the same time. I took a deep breath and let it out: "I have breast cancer." Even though I did not have all the details of my diagnosis yet, we talked for quite a while, exchanging questions and answering them as well as possible. It's nice (but then again very not nice) that my mom has been through a similar experience, and clear that I would be able to learn things from her that the doctors might or might not tell me. All in all, they took it pretty well, expressing their complete support, although I have no way of knowing how much of a brave front they were putting on for ME.


I felt a little relieved at having gotten the first announcement out of the way, so I decided to immediately call one of my sisters. She was getting ready to leave work, and asked if I wanted her to call me when she got to her car. Instead of answering, I stammered a little and blurted out, "I have breast cancer." She couldn't talk for long, but had questions similar to my parents.' She wanted to know why I was so calm, and I told her I was floating somewhere between shock and denial. Later I realized that my meditations prior to calling my parents had probably hypnotized me into having no emotions. ;)  


(The other sister had just lost one of her in-laws, so I wanted to wait a few days to speak with her.)


My husband and I had originally discussed waiting to tell the kids, until after school was out. It would have been only a few weeks, but when I found out I'd have to start chemo right away I realized I would have to tell them now instead. I think they would have noticed and wondered why their mama was bald! 


First came telling my son, who is 14 and still at home. I told him my diagnosis, explained what would happen next, told him I am determined to recover, and that we can talk any time about questions or concerns he might have. I expected him to be emotional. Instead, his face was red for a minute or two and then he was fairly stoic. I mentioned this later to a nurse, and she said this type of response is not uncommon. She brought up a few good points. Teenage boys (a) are trying to establish their independence from their mother and (b) turn sheepish at the mention of the word "breast." In other words, when I think my son is sitting next to me thinking "oh, dear, my poor mother is enduring such suffering," what he's actually thinking is "she said breast, hehe."


Next up in operation "Share the News" were my two daughters. I dreaded telling them the most, because we're very close and they are sensitive. They attend college in Georgia, which made it that much harder -- I would have preferred to tell them in person. They both took it very hard, becoming upset and crying. I tried to be reassuring, but it was SO difficult. I felt their pain like it was my own, and just wanted to hug them and hold them close. We all pledged our undying love for one another, and vowed to talk every day and be a team. 


Wow, I adore my kids. They are so special and I often wonder why God chose me to have them. 


So, telling the family was rough. Telling friends and loved ones continues to be rough. But I have learned that people don't always react how you think they will, and that the prayers and positive energy people express have an almost-immediate effect on my strength. I hope everyone knows how grateful I am for that. 

An Explosion of Information

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The Second Opinion
Once I had my initial diagnosis, several good friends (and their friends, and so on) had recommendations for treatment and physicians. One recommended oncologist was mentioned twice by people who don't know each other, so I thought I'd check that one out. Even the surgeon who diagnosed me said that Dr. P. was great, and that I'd be in good hands. When I called, I was super lucky that there was a cancellation, and I was able to get in just a few days later. 


Dr. P. is with a hospital about 45 minutes away, but I felt that a little extra driving was a small price to pay for good care. I wasn't disappointed -- I liked her right away. She is very intelligent, but speaks in detail at a level my husband and I could understand. She also sat down and made herself comfortable in the exam room, prepared to talk at length. It always bothers me when I feel like a doctor has one foot out the door throughout the visit, so I was glad not to have that experience with Dr. P. She used phrases like "quarterbacking" my care, "expecting" certain results from treatment, etc. She really put me at ease. 


She was also very thorough. Not only did she answer all my questions, she laid out next steps and gave me a good idea of what to expect from here. She mentioned a number of additional tests she wanted me to have, and said that she wanted the hospital's own people to go over my scans and pathology slides to make sure they agree with the diagnosis. I wouldn't have even thought to ask for that!


On the spot, Dr. P. got me a quick visit with a recommended surgeon, and so I got both of their assessments that day. I had a good feeling about the hospital and its practitioners, so I made the choice to continue with them. 


Again, I was not disappointed. The very next day, my phone rang all day with both the surgeon's and the oncologist's offices setting up appointments for testing, asking me questions, and getting records requests completed to get the original scans and diagnostic materials. I was to get a bone scan, CT scan, lymph node biopsy and echocardiogram within the upcoming week. 


The Lymph Node Biopsy
Most of the ensuing tests were no big deal, but I wasn't looking forward to another ultrasound-guided biopsy. I figured it would be a lot like the biopsy of my lump, except that the lymph node in question was up under my left arm. I was afraid that would be uncomfortable, and it was! Not that it hurt more, but I was tense and nervous that I would be jumpy during the procedure. The doctor numbed the area, just like the first biopsy. I had to hold my arm up out of the way while the small incision was made, and the doctor went in with the extraction device that would remove small samples of cells. The tension, the awkward position I had to hold, and the fact that I hadn't eaten all day ganged up on me then, and the next time one of the nurses asked how I was doing, I said I felt faint. In no time I had cold cloths and ice packs on my forehead and neck. That helped a lot. 


The doctor and nurses during this procedure were so professional and caring, I felt compelled to fill out their comment card saying so. 


P.S. The lymph node biopsy was positive (which is negative!). :((


NEXT ENTRIES: Telling the Family, The First Chemo Treatment, How Do I FEEL?

Beginning The Fight of a Lifetime

A Whirlwind Month

Wow. As I look back over the past thirty days, I can hardly believe it has all even happened, much less that thirty days have flown by. It all started with a meaningful health ritual, the annual mammogram. OK, truth be told, I was a little late this time. I'd always tried to be conscientious about it, particularly given my own mother's 25-year (and ongoing) struggle with breast cancer. But life had been hectic -- we had moved several times, and dealt with some other assorted dramas. 

But I got it done -- the excruciating sandwiching of my breasts between two plexiglass plates, up to a half dozen times by the time they are satisfied with the images. Then I went about my business, vaguely aware that I'd get a form letter in a few weeks saying everything is a-ok.

I only experienced a momentary panic when I got a letter requesting that I come in for some more imaging, and saying that there was a spot they wanted to take a closer look at. Then a very deliberate sentence saying that in most cases, this does not mean cancer. I felt like I was due some good news, so I didn't stress over it too much.

The next few steps happened quickly. For that I was very grateful -- nobody likes the waiting period between tests, and the breast center at our local hospital really seemed to understand that. The same day I had a second mammogram, they got me in for an ultrasound. That still didn't provide the information they needed to "clear" me, so a biopsy of the suspect area was scheduled. 

The Biopsy

To put it plainly, I was scared s***less that morning. I'd gotten the standard "no deodorant, perfume or powder" instructions, and I think I could have really used the deodorant. But once things got going, it really wasn't that bad. They numbed me, first the outer layer of skin, then a little deeper. A lot like a trip to the dentist. So there was no pain to speak of, just some uncomfortable tugging and the daunting knowledge that someone was (assisted by ultrasound) digging around in my boob. Then it was over, and all I had to do was wait.

The Diagnosis -- The Day I Became a Breast Cancer Survivor

I had an appointment with the surgeon to get my results on a Thursday. So when the phone rang and it was she on the phone, I felt a momentary joy. Surely, she wouldn't be calling me with bad results, right? WRONG. My joy turned to fear when I heard the word "cancerous." I didn't hear much more of what she said, only that she wanted me to have an MRI Monday, then come back to see her on Thursday. Then more waiting. 

The MRI showed a "suspicious" lymph node, which would have to be explored further. But that and the size of the tumor (somewhere between 2 - 5 cm) put me at stage 2-B. Specifically, I have triple negative breast cancer, basal subtype. My mind was swimming as the information flew, so it was great that my husband was there. I learned that the recommended protocol would probably be chemo first, then surgery, then radiation. Yippee. The REAL odyssey was about to begin!

About this Blog

I've only told a few people thus far about my cancer. I still can hardly even say / type the word cancer, but I'm trying to get used to it. I plan to use this forum to invite my friends into the story a few at a time. I'm on Facebook, but I'm thinking that's not the right venue for cancer talk. Let's save that for happier news! Above all, I'm not really looking for sympathy. My rewards will come from your prayers and positive energy (every bit helps!), and the knowledge that I might inspire even one person to put her breast health high on her list of priorities. 

I've designated myself a breast cancer "survivor" rather than a victim. The title is usually reserved for the brave ladies like my mom, who have fought the disease for years. But for my precious family, I WILL BE a survivor, starting today!

Next Entries:

The Second Opinion; The Lymph Node Biopsy; Telling the Family; The First Chemo Session