Boy that subject’s (“the descent”) attention grabbing- rather grim sounding! But what ascends must also descend. We tend to assume that the descent is always much easier than the ascent when we’re talking about climbing down off of mountains. And for the most part that is true- the psychological pressure is off because quitting is no longer an option…..barriers of physical pain have been broken…..fears have been conquered….the goal has been achieved….and hopefully the purpose clear. That makes the journey back down a much more peaceful and internally secure prospect. But it doesn’t necessarily make it less physically strenuous. In fact….for me….the hike back down has always been more difficult. My legs are weak and wobbly from the exertion. My knees are having to accept weight from a different direction- and for a person that injured one knee in an ice skating fall as a child and the other in a car accident almost a decade ago- that can mean a potential fall when one of my knees gives out. So the trip down is always much less emotionally taxing but takes a lot of my mental concentration as I carefully plan my steps and gauge each one by the steadiness of my legs. Going up I try to ignore my body and what it’s trying to tell me- going down I always have to be really in tuned with it.
So I haven’t written in a few weeks because my knees have proven their weakness and I’ve had to take a break. On 11/25 I had my last drain out- the right lymph node drain. Boy was I relieved to have that last appendage removed from my body! I joked with my family that those four little round drains hanging like tentacles out of my body made me feel like an alien- I even lovingly referred to them as my “alien pods”. But I wasn’t so attached that saying good-bye was difficult. The only thing is it really hurts when the doc pulls them out- and one thing I have learned through all this is that Aimee can’t take pain medications. But God knew that because He gave me a pretty high tolerance for pain……I have only had one pain pill through all of this! So the last drain was removed to free me for Thanksgiving. Both my arms have lost tremendous range of motion and I have had to painfully stretch every day in attempt to rehabilitate them. The Dr. also severed (as is common) the nerve in my armpit when he removed the section containing the lymph nodes. This left me with NO feeling in my armpit and an excruciating feeling akin to frostbite that runs from my shoulder to elbow on the tricep area of my arm. Even my shirt sleeve brushing against it hurts. So with that- I wasn’t entirely free for Thanksgiving…….but free enough!
The day after I had my drain removed I saw Dr. Patel (my oncologist). He was pleased that the outcome of all our hard work (mostly my hard work) was so favorable. He humbly reminded us that we’re “not out of the woods yet”. The recurrence rate for IBC is extremely high…so we will all be vigilant in watching for the next 3 years. Seven sounds a lot like eleven….and both Al and I were mistaken about the outcome- it was all 11 lymph nodes that demonstrated dead cancer. That is a little more worrisome only because we can’t be certain that there isn’t/wasn’t cancer beyond that when all of what was collected showed evidence of having once had cancer. But Dr. Patel wasn’t so worried that he insisted immediate chemo was the next step. He felt out my emotional landscape and quickly discovered my knees were weak. He suggested that we do radiation next- that’s not easy….but compared to chemo….it’s a nice little plateau in the road. So I will meet with the radiation doc in December…and a treatment schedule will be developed. It will most likely include daily treatments to my right chest and axilla. And following that I will have at least 2 more treatments of chemotherapy. So for now……that little rest is very much earned.
When I saw Dr. Patel I had noticed I was not feeling so well. I had a fever. So he prescribed an antibiotic for safe measure. My red blood cell count is also low. It never truly sufficiently recovered from that second surgery I had to have to clear out the hematoma at my mastectomy site. So Dr. Patel prescribed weekly doses of Procrit to assist with that. I came home relieved that I could rest in this plateau for a while. But by Thanksgiving my fever had spiked to temperatures reaching close to 104 degrees. So I sat on the couch all day while everyone else prepared dinner. My condition deteriorated and by Friday morning I felt like I was on death’s door. I nearly passed out a few times and I was so weak I could barely talk. I saw my regular family doctor Friday morning. By then I had developed an obvious infection in my surgery site- probably through the drain opening. I also had a deep cough. The flu season is upon us. My sodium and potassium levels were dangerously low. So he kept me for IV fluids and antibiotics. And I started to feel a little better….but not without a price. It took five sticks and a blown vein that infiltrated before they finally found a workable IV site (not counting the three separate blood draws I had to have). I cried my way through that. Since October I have been poked at least three dozen times and I was just so tired of being a human pin cushion. Having veins that are difficult to find is an added burden for people with medical problems. I had to go in to clinic on Saturday and Sunday for IV fluids and antibiotics too. I was in bed for four straight days. But by Monday I was starting to physically feel better. Dr. Sales saw me three days in a row. I went through ultrasound yesterday just to rule out a pocket of fluid in the area that could exacerbate the infection. I continue to take my oral antibiotics. But the healing process has been very slow and much of the area remains a bright red color. Each day I get stronger and my potassium and sodium levels are leveling off. But I also notice the anemia that much more. I continue to take iron for that and will get another Procrit shot on Friday. While I got the best news I could have gotten….that there is no evidence of living cancer in my body………I have really been tried since October when that last fateful treatment sent me to the hospital with the DVT’s. Since then it seems I have endured every complication possible. The good news is there isn’t anymore….so I can only get better.
I haven’t had the huge emotional breakdown I was anticipating though. I have gotten frustrated and cried a few times..but mostly because my arms will not allow me to do whatever it is I wanted to do. I drove for the first time yesterday since before my surgery. I’ve had a few real emotionally rich dreams the last week. But I think I am still so focused on healing that I haven’t had the time or luxury to concentrate on emotion- that downhill part of the experience……..it may not actually hit me until I get to the bottom of the mountain and get back to life as usual. That first day back at work…..seeing my new body in my work clothes for the first time. I know Al has been such a blessing to me through all of this. He’s been there every step of the way. And he too has been pretty emotionally reserved. Last Friday when I was so sick he did tell me that “it makes me sick to my stomach that you have to go through all this”. Not the most pleasant thing to hear- but boy….did I need to hear it. And Justin has expressed much more concern the last few months. All this I have been through has really made him realize how important I am in his life. It’s nice that I’m not taken for granted these days……but it seems so unnatural that a 14 year old boy would have to learn that lesson. Amanda’s distracted herself through drama at school and through the church. She has the main role in the play at church this evening….so she’s going through her own mountaintop experience. And little Jared seems like he gets lost in the shuffle sometimes. But he certainly has a way of making sure we don’t forget about him. It’s nearly impossible for an 8 year old boy to articulate how he is feeling in an obvious manner. Jared’s been drawing a lot lately- and his drawing ability has really really improved this last year. He is actually quite good! So the therapist in me has paid a little extra attention to the details in the pictures…..but mostly just a hug now and again and Jared’s growing up just fine.
Well….I have to work on Christmas cards…..so I’ll have to write again when I get a little further down the path. Thank you for your prayers- it is without doubt that I believe that your prayers have carried me this far. Can you believe people at work are still bringing us dinner?