My tumor marker level has continued to come down. It has yet to reach the "normal" range, but since it peaked a few months back, it's been lower with each successive draw. I rarely cough now, whereas before, with my massive pleural effusion, I had an aggravating, almost constant cough. I'm not running a low-grade fever. My heart rate is no longer in the 110-115 range. I no longer need 11-12 hours of night sleep plus a 2-hour nap every day. No pain meds required. No anti-nausea meds required, either. Most importantly, I am feeling more alive than I have in a very long time!
I'm no longer stuck in the house and in my "spot" on the sofa due to fatigue and weakness. I'm able to drive myself places. I'm able to drive the kids places, an act that my previously (relatively) healthy self used to complain about. And, I can eat! This is something about which I've blogged extensively. Eating is such an integral part of human life ... both physically and socially. Necessary for life, for sure, but also pleasurable. In my family, every occasion is marked with a get-together that includes great food. Heck, sometimes there is no occasion ... the occasion is the meal! Can you say crawfish boil, fish fry, and big pot'o'gumbo? What can I say, I love to eat! Everything is tasting so good. I've even gained some weight back. Another activity that I really missed over the last few months is cooking. So glad to be back at that, too. Nothing major, and I do still get a lot of help, but I so enjoy planning meals and providing for the family.
All of these improvements have been gradual, but there was a definite time, very shortly after I started on Carboplatin and Gemcitabine, that I felt things turn around. It's been amazing!!! I'm so happy to again be an active participant of the family again. Firstly, it's really difficult to depend on others to such an extent that we've had to. The meals, the kid-driving, and Kim-driving that others have provided have all been such a blessing. And secondly, it's hard to be present but not totally there. Yes, I could still talk, and I was very interested in the kids' activities, but being so sick, I wasn't myself and really wasn't much help to anyone. I was a burden!!! I still am, to some extent. But I like to be more involved than I've been able to be. Filling out school paperwork, helping with college planning, working out transportation arrangements for all the kids' activities, paying bills ... and especially attending the kids games and performances. These are things you take for granted and even complain about when you are able to do them. You ladies know how much work it is to just be a mom! Well, I'm happy to be a mom again. And this week, I was able to see my daughter, Christa, graduate from Kingwood High School. Woohoo!
SO MANY BLESSINGS!
It's been a bumpy road, though. Two weeks ago, Dr. C informed me that one of the chemo drugs had caused a decrease in my body's magnesium level. It's one of the common side effects of one of the drugs. A low magnesium can interfere with the nervous system in some way (I didn't catch or care about the details,) and evidently this needs to be corrected right away, or else, something... So she recommended that I take a magnesium supplement. Fine, no problem! Oh and I would need to receive an IV infusion of magnesium with every administration of chemotherapy. What she didn't tell me was that magnesium is a 2-hour infusion, and if the value drops even lower, I'm in for a 4-hour infusion. It is NOT fun sitting in a recliner for hours and hours every week! First the premeds, then the chemo, then the magnesium. So many bags. So much tubing. It is even less fun for the person who accompanies me to these infusions (Danny,) who has to sit in a non-recliner chair.
Last week, my red blood cell counts were dangerously low and not only could I not receive my chemo because of it, I was told I needed a blood transfusion. Uggh! I was like, whoa, wait just a minute now! I don't think so! Don't they have medication for that?? Fifteen years ago (yes, 15!) when I was first diagnosed with breast cancer, I was given injections of a drug called Epogen to help boost the red blood cells. I recall it working well. And right now, I regularly receive Neulasta injections to boost my white blood cells. So Danny and I were both somewhat shocked that they were now telling me I needed to get blood. Wasn't that just for very sick people? I mean, really... I wasn't feeling that bad.
I had actually told Danny a few days prior that I could tell that I must be low. Although much, much improved from my near-deathbed levels of fatigue, I was getting out of breath with little activity. I had to curb my walking pace to a crawl to avoid getting winded. But... blood transfusion? I expressed to the chemo nurse my misgivings. She said that the APN would come and talk to me about it. That sounded great, because both Danny and I needed convincing.
Alicia explained that with each successive chemo cycle, my blood counts were getting lower. They would bounce back some, but each recovery level was lower than the previous one. My bone marrow was having difficulty keeping up after the repeated chemical attacks. They recommended a blood transfusion, two units, to bring the levels up to a healthy level, so that I could continue to get the chemotherapy. I communicated with her that I didn't feel that bad. She said that if I was already symptomatic, they surely didn't want me to get any worse. And it would be better to get lower, yet more regular (weekly) doses of chemo than have to periodically skip a week due to the low counts. This all made sense to us, and we agreed to the transfusion. On top of my cancer treatment world crashing down on me, today we are dealing with an angry teenager who is communication-challenged regarding her after school plans, and she doesn't drive! Arrrgh! Our solution: call in my mom to come and help!
It was just so overwhelming. I needed magnesium again (at least a 2-hour infusion,) and the blood transfusion would take at least 6 hours. This was a Monday. We planned on me getting the magnesium that day, and the blood the next. Then try for the chemo on Friday, assuming that my counts would be adequate after getting blood. We had to make arrangements to get the kids from school and to their respective activities. And this would be 3 days of missed work in one week for Danny. Thankfully my mom flew in and planned to take me to the two remaining appointments of the week.
The transfusion went well. It was a very long day in a hospital bed! My mom and I were there for about 9 hours. By the time you check in, get escorted to a room, have your port accessed, blah, blah, blah ... whew! What a day. We had a good time, considering the circumstances. We brought snacks: a bag of pretzels and a jar of cookie butter. What? Never heard of cookie butter? You don't know what you're missing! OMG it's delicious. I bought it from HEB after the nice HEB lady was offering samples while making cookie butter pie in the store. I'm a sucker for free food samples in the grocery store. After tasting it, of course I had to buy it. It's a jar filled with crushed spiced cookie creamy goodness. Trust me.
Uhhh, where was I? Oh yes, the transfusion. We were well taken care of and everyone there (St. Luke's Lakeside Hospital) was super nice. In the following few days, my shortness of breath simply disappeared! Yet another instance of "I didn't know how bad I was feeling until it improved." Interestingly, we parked in the same little parking lot as the MD Anderson blood bank bus. They were having a blood drive! I was there to receive blood, and they were there to collect it. If you ever have the opportunity to give blood, please do! It helps people like me.
Friday came, and my mom and I headed to MD Anderson for my rescheduled chemo treatment. I had my labs first, as usual. Unfortunately, the nurse met with us in the waiting room to inform me that again, I wouldn't be receiving my infusion that day. This time, my platelets were too low! Ahhhhh! Another week off.
Sighhh... It's as if I'm taking one step forward and two steps backward. So much progress, yet so many obstacles! I'm concerned with the big picture. Here I have a treatment that is working phenomenally on my cancer, and yet its dangerous side effects may eventually lead to the need to discontinue it. I can't keep having to postpone treatment. Clearly, how can it keep working effectively if I can't get it regularly?? It's worrisome.
This week was my CT scan of the chest, abdomen and pelvis. I did not expect BAD results, because overall I am feeling so well. Nevertheless, it is stressful. The cancer cloud is always looming above me. Per our usual routine, we checked in to the CT department, was given my contrast-laced lemonade and I informed the nurse that I was going to the Infusion Therapy department to have my port accessed. I've been doing this for a while now, because I found that when they inject the contrast media into a peripheral vein (such as in the arm,) it burns. It doesn't burn when it's injected into the power port, which has a direct connection with my internal jugular vein. The CT department nurse said "We can access your port here." This was new, but it's more patient-friendly to do it there than having us walk across the building and to another floor. So, I agreed to it. Big mistake!
It was clear early on that the nurse who was to access my port (in case you don't know, it involves sticking a special needle device into the port which is implanted under the skin in my chest,) was not experienced in accessing ports. In fact, she appeared to be inexperienced in opening the package and setting up the sterile field. Red flag ... but you think, well, she's just being cautious. Surely she has done this before. Right? Right? She sticks me, but is unable to get a blood return and she is unable to flush the line with saline. This, of course, is paramount to the port working properly. I say, "I'll just go to the 8th floor (Infusion Therapy.)" She removes the needle, and tells me "I can get another nurse to try." That was my ticket outta there, but noooo, I say "OK." Why? Why would I do that?? The second nurse arrives, and proceeds to display an extremely slow and deliberate set-up, similar to the first nurse. Against my better judgment, I allow her to continue. However, she does successfully access my port, as evidenced by blood return (getting blood when you pull back on the syringe) and the ability to flush with saline. She tapes it up, abundantly, I might add, but then it no longer works. No blood return, can't flush. I am really getting upset now. Tears are welling. She untapes it all, fiddles with the needle, keeps trying, using (too) much force on the syringe's plunger. Finally, I stop her. This is enough. I tell her that I'm going to Infusion. Just take it out. She does, but now the skin surrounding my port is red and irritated, caused by the repeated application and removal of adhesives. First the tegaderm which held the topical anesthetic in place, then the adhesive-ringed hole of the sterile "drape," then the port access kit's dressing. Repeat times three, and by the end of the day there is even a small area of broken skin! Even today, almost a week later, my skin is still damaged (yet healing.)
Meanwhile, Danny was in the waiting room, where he was worried about me because I'd been gone for much longer than I should have been. He had received a call from my 12 year-old son-- David was sick and wanted to be picked up from school. Danny called his Dad to work this out. Later, the school nurse also called. And, my daughter texted us because she, too, had a situation. It was letterman jacket fitting day, and she didn't have a check. It was piling on! I came out into the waiting room, fresh from my traumatic and unsuccessful port access experience. It was then that I broke down and cried! I was seeing the big picture. If my port doesn't work, I cannot get chemo. Or blood. This treatment that is literally saving my life can only be infused through a central venous access port. This port has been working for over 2 1/2 years. It required an outpatient surgery to "install." I really don't want to have to have it replaced.
Why now does it not work?? I wonder if they didn't flush it properly after the blood transfusion. We head to infusion and wait what seems like forever. I am finally called in. I am praying that they can access the port. It is only in retrospect that I fully recognize what went wrong in the CT department. That, and after going to Infusion Therapy and having a VERY experienced nurse access my port quickly and with ease. Success! Her kind demeanor eased my worried mind and she assured me that the port was working fine. Danny's fervent prayers from the waiting room were answered!!! The nurse advised me to go to Infusion Therapy FIRST, next time. Don't you worry, Nurse You-Are-The-Bomb, don't you worry!
I was scheduled to see Dr. C six days later. I usually have an appointment with her after any scans are done, so we can discuss the results. However, the day following the CT scan, as I was driving home with my daughter in the car with me, my cell phone rang. It was MD Anderson. No matter who or what department calls me from there, the caller ID says the same number. So I always know it's MDA, just not whom in particular is calling. Of course I answer, and we are on speaker phone in my much-loved, high-tech mini SpUV. (That's right, I call it a SpUV. Sport Utility Vehicle) "Mrs. Hellmers?" "Yes?" "It's Dr. Coscio." I don't remember what I said, but what I am immediately thinking is oh-my-gosh, WHY is Dr. Coscio calling me? She said that she didn't want me to have to wait all the holiday weekend to get this news: the fluid in my lung is greatly decreased, and it's the best it's looked in a very long time. I SO NEEDED THIS! The CT hadn't yet been officially read by the radiologist, but Dr. C could see the improvement herself. After the call ended, Bethany and I could only look at each other and smile! HAPPY WEEKEND TO ME!
Today we met with the doctor to go over the CT results in greater detail. She handed me the report and proceeded to pull up the scan (digital films) on the computer in the exam room. She showed us a side-by-side comparison of last week's CT and the one from three months ago. The difference was amazing! There was no visible fluid in the left lung. And, that lung had re-expanded from its previously collapsed condition. It looked much like the right lung, instead of being a small fraction of its size. The radiologist's report noted that the left-sided pleural effusion had "resolved," and phrases such as "improved" and "significant improvement" were used more than once. There were examples given of nodules (tumors) in the chest, liver, and right lung decreasing in size, with specific measurements documented. Objective evidence of major improvement, on top of me feeling good! Wow ... just, wow!
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| Family pic @ Christa's graduation |
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| Me & my graduate girl |
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| Bethany & Me, awaiting the ceremony |
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| Mother's Day |
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| Me & my mom during her last visit here |
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| After 15 years of cancer treatment, this is the first time I've taken a picture while getting chemo. Somehow, oddly, I found it impressive that I was getting 6 different bags of drugs, the most ever at one time. Hey, whatever it takes, right? |
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Hello Dear Kim;
ReplyDeleteI just read several of your blogs about your Journey, and I Praise God for your perseverance, strength and determination... ��
I was diagnosed in 09/2005 with stage 2 BC and have luckily not had a recurrence, but have since faced many health issues related to my dx. I've had several friends struggle with stage IV and know it is a tough ride.
I will keep you and your family in my prayers.