I’ve waited a while to write this time for a couple reasons. The first
is that I simply haven’t had much worthwhile to share. And when I do have something- it turns into pages! The second is because I didn’t want to wait until I got to drowning point to write again. Last time I wrote I was really down. I started this letter yesterday morning. And by this afternoon I was already sinking. I have cried off and on all day today. Brighter days will come……
There is definitely a pattern to this emotional roller-coaster, and I am convinced it is driven by the chemotherapy itself. I am sure the ladies having gone through menopause can sympathize with all the wonderful things my body is going through- even the ebb and flow of the emotional sensitivity. But I’m doing it! One step in front of the other.
The other day I told Al that I feel like I’m wearing a pair of those really big and awkward snow shoes (the kind that look like tennis rackets) and that I had already trekked 10 miles in them. Man….I am tired! Dr. Patel kindly reminded me the other day to “not let this thing” take over my life. But I don’t think he’s ever had cancer- because my body has a way of reminding me faster than I forget that my control over my health and how this treatment makes me feel is pretty limited.
You know, this Christian lady from work told me yesterday that she is so blessed by me, seeing me come to work everyday with a smile on my face, and that it reminds her that her problems are not so bad. I cried at her openness and sensitivity to me, but afterwards I thought, “is that Your purpose for my suffering, Lord, that others may feel they ‘don’t have it quite so bad’?” I mean, I was a little perturbed by that. Not at her- at God. And then He quietly reminded me that my purpose here is not mine. That like Job, I cannot stand and question the God who created the heavens and the earth. That my purpose here is to serve. And that He will fill me with every measure needed to carry that out. So my defiant sense of my self once again was humbled by the majesty of our Great God. I read this morning that the constellation Sagittarius (yes, I am a December baby) is literally being swallowed up by the Milky Way. How ironic!
I had my first of two “highly aggressive treatments” as Dr. calls them, beginning last Friday. I went in for the Cytoxan. When that was finished dripping, I got hooked to an infusion pump that slowly pumped Adriamycin into my port-a-cath over the course of the weekend. While it seemed much more tolerable receiving it this way, the classic chemotherapy odor was just as present- and I think I am developing a psychological aversion to red kool-aid because of that smell and the nausea! Anyway, I returned on Monday to have the empty pump removed and to receive my third chemotherapy- Taxol.
Taxol is a newer chemotherapy drug that is harvested from the bark of the Pacific Yew Tree. It was discovered as a cancer-fighting agent in the 1960’s and the controversy hasn’t stopped since. Tree-lovers want to protect these rare and endangered species. Healers want to save lives. And I suppose somewhere in between is the real issue: money. The Taxol alone is about $2000 per treatment. Thank God I have insurance- even if it isn’t ‘five star’! Check out the picture of the Pacific Yew- isn’t God amazing?
So yes, this new and aggressive regimen is kicking me in the butt. The hardest moment so far has been the transition from the Adriamycin pump to the Taxol. I was given Benadryl to decrease histamine reactions from the Taxol, and as you know, Benadryl makes you lethargic. So, in this semi-conscious state of delirium, while the cumulative effects of two chemotherapies are edging up on me, I was about to receive a third. I felt sick. Even beyond sick- I felt like I was dying. And in a brief moment of panic, I had this overwhelming urge to rip the needle right out of my port, jump out of the putrid pink chemotherapy recliner and shout: “I am done. No more. I had enough!” But I talked myself out of that- “just one more treatment….you can do it.”
Panic is an interesting response. In my life I have been in some pretty interesting situations that rightfully evoked fear. Gosh, I could write books about the many narrowly escaped deadly situations I have breezed by. But even in all that fear and adrenaline, I’ve never actually experienced panic. At least not the kind that psychologist’s recognize as a pathology. But since I have been diagnosed with cancer, I have these panic episodes that are creeping up on me from all sides. Besides the one in the chemo room, I also had a panic attack when I went in for my brain MRI last week. Now mind you- this is the same place I went for my other imagings, where the radioactive contrast line busted twice, and the x-ray machine boxed me in from all sides as I had to sit still for 15 minutes. Then I had my cancer sister telling me before I went about her panic attack in the MRI machine. So, by the time I got there, my blood pressure was already high, chemotherapy was surging through my body, and there was that same darned nurse that can’t seem to get it right! So I head towards the door and observe a large sign on it: WARNING! You are entering a highly magnetic field. Failure to remove metal objects, such as jewelry, may result in severe injury. Well, I had obviously taken everything off. Except my belly-button ring. That’s one piece of jewelry that never comes off. And it is so fixated, that I just didn’t even think about it until I laid down and was put into that machine.
So here’s how it goes: You lie down. Your head is perfectly fitted into this formed cradle. A plastic “mask” (sort of like the kind that Hannibal wore in Silence of the Lambs) is placed over your face. You are instructed not to move. The table you’re lying on slowly moves towards a cylinder that completely covers your body. There is probably 4-5 inches clearance in any one direction. So there I am. 10 seconds. And the first thought that comes to my mind is that darned sign and my belly-button ring. So I get these images of this magnetic machine ripping my belly-button ring right out of my flesh. And that was it- I panicked. I think I actually stopped breathing. I tried to tell myself I could get through it, but there was no hope. My mind was completely derailed and there was no coming back. So I began yelling and violently kicking my feet to get the technician’s attention. She came out and calmly said, “what’s the matter, hon, you claustrophobic?” I told her no, I didn’t think so, but that I was worried about my body jewelry. I sat up to regain my composure and let the intense nausea roll off. She asked me if I was worried about it because I felt “burning”. Hilarious! No, no burning. So we chatted for a minute or two, and she invited me to come back after I had consumed some drugs to calm me, if I wanted. I didn’t want to come back at all, so I sucked it in, and off I went back into that machine. The funny thing is, in our conversation she asked if anyone in my family had breast cancer. I told her that they had not, and she commented on the hereditary component. I informed her that IBC is not hereditary. She clearly did not know anything about it. I guess a lot of people don’t? If you learn one thing from me about cancer, remember this: YOU DON’T HAVE TO HAVE A LUMP TO HAVE BREAST CANCER.
So I closed my eyes and managed to endure 15 minutes inside this tube. The noisy clicks, buzzes, and pounds it made were actually a nice distraction to keep my mind occupied. After the 15 minutes I was brought out, still immobile, and the contrast was injected. I don’t know what in the hell is wrong with that lady there, but she missed my vein and ended up injecting the contrast right into my arm! So they pushed me back in for another 5 minutes, where I laid enduring this horrible burning sensation in my arm. When I got home I had this huge dollar bill sized bubble of contrast in my forearm. I took pictures just to protest to Dr. Patel that I wasn’t going back there, but to no avail. He said he’d write an “official sounding order” so that in the future they have to use my port to inject contrast. I decided next time, I’ll just go in there looped.
Panic. Before you start thinking that panic (or fear) is always an absence of faith, and thus always has to be addressed on that level, let me just qualify that my recent panic episodes have not been rooted in a specific fear at all. In fact, in terms of fear, I think God has really comforted me this past few weeks. I am certain that there are specific prayers for this on my behalf. But this type of panic is different- it’s more like a physiological response. My “resting” heart rate has been over 100 beats per minute the past few months. That’s a natural effect of low iron/red blood counts, and the chemotherapy in the body. So that almost seems like a set-up for panic attacks, doesn’t it? Anyway, we went to church Wednesday night, and God truly spoke to me. I don’t know how Christians stay away from church. Going to church for me is like going on a date with my husband (which is unfortunately something we never have the opportunity to do). It keeps the flames burning. So the sermon was about God’s healing from a distance. And the Pastor shared a story that ministered to me. It was about his own experience with drowning- how he almost drowned once. And the point he made was that most people drown because they panic. If only they would relax and let their lungs fill up with air, they could float sufficiently to save their life. I was touched. And as tears came to my eyes, I thought that maybe I am struggling too hard. I thought about those koi flopping around on the ground again. About the swirling eddies. About the boat and the storms. And the waves. So I came home and I did a little research.
It seems that most drownings occur because either: a) the person had no experience with swimming at all, b) the person overestimated their swimming ability and got into trouble when their body could not perform at the level they had anticipated, or c) environmental circumstances caused the swimmer to become overwhelmed (swirling eddies, you know?). With the overwhelmed swimmer, it is a much more complex set of reactions than can be controlled by simply relaxing, filling the lungs with air, and allowing your body to float. In fact, the physiological system becomes so overwhelmed and exhausted, that breathing becomes labored. Then muscles cramp from the build up of lactic acid. And the struggle changes from swimming the distance to just keeping one’s head above water. Once water enters the mouth and is swallowed, coughing is the natural reaction, and that causes more air to be expelled from the lungs. This gasping for air and inhaling water will cause carbon dioxide to build-up and the result of that is an uncontrollable contraction of the diaphragm. This gasping contraction can become the lost hope for survival, as most often what is gasped is more water. So I would suppose that since I am not an inexperienced swimmer, and this isn’t a swim I intentionally set out on accomplishing, I am like the overwhelmed swimmer. The interesting thing I learned through my research on the physiology of drowning though, is that the body has it’s set of characteristic responses that define drowning. Once the diaphragm has involuntarily contracted and caused a huge inhalation of water, a person begins to sink. This is immediately followed by the loss of voluntary muscle control. It’s like you become a helpless dead weight, but the panic, which is motivated by the inability to breath, has fleeted by this point. So, whether you regain your breath and relax to float to the surface, or inhale water and sink to the bottom, the panic isn’t the definitive end of the drowning experience- it is only the part of the experience that the person has to work through- whether they survive or drown. The ultimate result of such an experience probably has more to do with the condition of the body than it does the ability of the mind to work through panic. I mean, you can struggle all you want, but there comes a point when your body is just tired, your energy depleted, and your will of mind cannot muster any more strength. But the mind/body connection is a powerful one, and God supersedes them both. So I do take comfort in this- that God is with me however this turns out. And I also know that in spite of the message that I need to surrender, I also am assured that my struggling is a good thing. I’m going to keep fighting for my life, relying on God’s strength, until I just can’t anymore………
The good news is that I don’t have any detectable problems in my noggin. And my echocardiogram proved my heart is still healthy. The bad news is that after all this chemotherapy, I still have this lymph node that stands defiant. Dr. Patel laments with each visit that “it’s gone down, lady”- meaning the node is smaller. But he’s been saying that after every treatment, so by now, the thing should have turned to dust! I can only hope as I approach surgery that they get in there and find the bark is bigger than the bite. I mean, maybe the cancer “stretched out” the lymph node, and the cancer’s gone, but the node just hasn’t stretched back into place? Positive nodes (number and characteristics) are prognostic indicators at time of surgery. Ideally, they would find no evidence of disease in my breast or nodes. But, even Dr. Patel is not believing this will be the case. He prepared me yesterday for the likelihood that I will need additional chemotherapy after my bilateral mastectomy. But it’s not a shock. What will be more of a shock is waking up with no breasts.
But I keep telling myself how fortunate I am that I don’t have cancer in a vital organ- like one I really need. I mean, breasts are nice. God gave them to me, and I have enjoyed them. I have nurtured and nourished all 3 of my children with them, and I am so very, very, grateful for that. Many women my age don’t even have children yet, so I was reminded this week that may be one positive point for having my children so young- and how thankful I am to have them. Chemotherapy can make women sterile. So, what are breasts? It’s not like a lung, or a kidney. It could be worse. And I am looking forward to the break from chemo afforded by the surgery. My last treatment is 10/10, and then surgery in early November. I will resume chemo in mid-December. And not only the break from chemo, but Al and I are going on a cruise to the western Caribbean with my parents in December. We are really looking forward to that.
And how is Al? Well, he’s starting to get tired too, I think. He doesn’t understand my crying spells- he always looks for an immediate environmental cause. Men don’t often relate to the delicate chemistry of a woman’s emotions. But, he’s staying strong in the Lord, which is the only lasting source of strength. The final adoption hearing was last Friday. All the kids signed their own petitions and got to take pictures with the judge. So, it’s official now, and there’s nothing left to do. I am so grateful to God for that too. He has blessed me with such a wonderful husband. I am humbled thinking about having to go through all of this without him. Al’s been giving me daily shots of Neupogen- Dr. prescribed it. Neupogen is an E.Coli derived growth stimulating factor that is supposed to increase white blood cell counts. Mine aren’t low, but with the current regimen I am on, they are expected to become dangerously low, so as a preventative, I have to get daily shots for 10 days. Al’s been good about it. The medication itself is awful. It causes bone pain that is difficult to describe. It can be like an excruciating bend-you-over kind of pain. But often it is an intense pressure kind of pain. The closest thing I can relate it to is having a baby- that pain from contraction that makes you want to push. There’s like a pressure from the pain that makes me want to bite down real hard on something (jaw pain) or go jogging (femur’s hurt). I told Al I want to just jump down on my legs real hard. He tells me, “well, just hit your leg and see what happens”. He’s always saying these really crazy things, and most of our moments are in laughter. He still accompanies me to every appointment, and every treatment. And I know he’s relieved that I’m not doing the stem cell thing. We both just had sick feelings in our stomachs that this wasn’t the direction we were supposed to go. And so, not looking back, we continue forward. I’m glad it’s me that has cancer, and not him!
The kids are all doing well. We went to see Third Day again last night. It was tough enduring the bone pain, but it was well worth it. School’s well under way, and grades are coming out soon. The kids all going in different directions, and our house stays so busy with everything going on. Gosh, it’s almost time to start thinking about our Christmas newsletter! I always loved doing that every year, but this year it almost seems to pale in comparison to the writing I’ve been having to do lately. And I apologize for that. Some people are really blessed by it. Others only comment that my “letters are very long”. I can’t help but share what I am given. And I am thinking about putting the letters, and responses, together in some type of cancer memoir to see if it’s publishable. Some people have told me they have laughed and cried over my letters. Well, I have laughed and cried over your responses too. I cherish them, your thoughts, and your prayers.
One more quick note:
October is not just domestic violence awareness month, but also breast cancer awareness month. Inflammatory Breast Cancer could use some awareness. The Oxygyn channel is airing a made-for-tv program, starring Ally Sheedy, in the month of October. The program is about Chris McHugh, a 34 year old woman diagnosed with IBC in 1997. Chris started http://www.choosehope.com – a cancer encouragement and support organization. She passed away from IBC in April 2003, at age 40. She left behind two children and a passion to give hope to those who suffer from cancer.