The Hair Farewell Tour

Saying good bye to the hair which has kept me warm for so many years and would shield me from the world is not an easy thing to do. I was told to expect them to fall two weeks after the beginning of chemo. That will be in a few days.

I was advised to cut them very short before they would fall off. It is less traumatizing to see short hair fall rather than long locks. I would tell friends this was their farewell tour.

Last Friday, on the recommendation of the Cancer center, I went to Pepper’s salon in Puyallup who cut hair for free for people in my situation. I went there not so much to save money but to be in the hands of people who would be used to deal with someone like me. That was a good idea. Amber, who took care of me, was kind and professional. I thought I had a healthy dose of detachment and kept reminding myself “it will grow back!” and “remember: no metastases to the liver!”

However, when Amber first used those scissors, I started crying. Amber was perfect: gentle but keeping on working with precision. She did not let my emotion overwhelm her. After a few minutes, I felt better, relieved actually, moving forward this step I had been dreading.

This also leads to a new experience: drafts around my ears and neck, which were never so exposed. I need to avoid catching a cold with such unpredictable white cells count. I found several hats and bonnets in our neighborhood Walgreen. My favorite one comfortably covers my whole head and even includes additional bear ears. This fits well into my spirit: I am ready for hibernation!       

                                               

Starting the Journey

At the beginning, it reminded me of a car-wash. When you drive through the car-wash, there are a few moments before anything happens – still you perceive the increasing pressure of the water.

The first two days after chemo, this is the way I felt, a buzzing of diffuse and disorderly energy throughout my body, a discomfort I could not define. On Monday, I received the medication without allergic reactions or headache. It took 6 hours instead of the 3 hours that were planned. That was the first round so I first got some saline solution then the medication against nausea before the chemo stuff. On the next day, it was time for the shot meant to boost my white cells.

Side-effects caught up with me two days later. The bone marrow, maker of the white cells, acts up under the effect of the shot. Bones get sore and you feel like you have the flu. And they were right when they told me skin and digestive systems would be first in line. On Thursday, a rash developed on my face. I won’t go into details when it comes to digestion but I now drink little sips throughout the night as I feel so dehydrated during the day.

Then weekend arrived and I felt better. Well enough, in fact, to articulate with sagacity how “the central themes of your religious heritage and theological understanding inform my ministry”, in other words write my final evaluation of the second unit of my residency. It was due on the following Tuesday. Chemo started – and life goes on.

Liver and Baby Goat

The results of the biopsy were long to come. We were restless when we got to the appointment with the oncologist on Wednesday. After a long wait, she arrived with an apologetic smile. “The sage continues!” she announced. The results were not conclusive. The cells from my liver were abnormal and the first lab results could not determine if those abnormalities were benign or not. If there was cancer, the whole picture would be completely altered. Instead of a “stage 1”, caught early, this would be a cancer in stage 4, with a metastasis in the liver. For such a cancer, said the oncologist, “I cannot promise a long term remission.” There is no stage 5. Stage 4 is the most serious.  

Everything was sent to another lab in Seattle, and this time, the results were due on Friday night. From Wednesday to Friday, days were strange – with moments of fear and others were all sensations seemed numbed. On Thursday afternoon, my four fellow chaplains residents and our supervisor prayed for me. During the prayer, I felt calm and lightness come over me.

Eventually, I got the results on Friday night. No cancer in my liver. I literally leaped with joy like a baby goat on a mountain path, as relief went through me like a beneficial wave. We are back to the first picture and “stage 1”. The chemo will start as planned on Monday. As much as I dreaded chemo, I now see it coming without apprehension. Never mind the side effects, losing my hair, all this will be temporary – so easier than what could have been!

I did not imagine I would start chemo with such a joyful heart…

Rebound

Ah, these American suspense films !!!  At the first lull, we know that a rebound will happen; alien eaters of human flesh emerge from one astronaut’s welcoming interiors or zombies will appear in near-by windows to the sound of sudden loud music. I didn't think to live the equivalent of one of these dramas in the course of my medical treatment. I was to be ready for chemotherapy which was to begin yesterday, Monday. Hah!

I had an appointment with my oncologist Friday evening and another appointment for Monday morning. This monitoring made me feel as if I were preparing for a trip into space ! 

Friday evening, the cancer specialist began with good news ; the six lymphatic nods taken during the catheter procedure were all flawless! No cancer!

She still had the results of the MRI of my abdomen to read and she opened the document in our presence.

This MRI had been prescribed because the scanner saw a shadow on my liver and another on my gall bladder, perhaps a cyst on each of these organs, but not reacting as cancer tumors on the scan. She, however, wanted to see the area closer up than the MRI. She read the report and was silent for a while. The report pointed out that some tumors could be malignant, even though they did not seem so under the scanner.

After consultation with another colleague, a decision was made to go in and see. The chemo was rescheduled. On Monday morning, Irvin and I arrived at the Good Samaritan Hospital where I had had my first chaplain training in the summer of 2011.

On the program : a biopsy under local anesthesia. We thought it would only be a matter of one hour. Irvin had brought something to read and had in mind to settle in the waiting room. But—oh, no! The nurse explained that they’d keep me for five hours ! They prepare you and then the procedure takes 40 minutes. Then you must remain, resting on your right side, until the time is past when a hemorrhage is possible. But finally, the experience ended well. Sure, I’d have preferred not to be so conscious during the biopsy— to see in my field of vision the radiologist with the long syringe in his hand as he was close to puncturing my abdomen. That was a bit alarming, even with the light sedation which fogged my mind.

The period of recovery was very gentle. I had no nausea, as I had been premedicated by the nurse to whom I had told my recent misadventure. I had little pain despite the radiologist’s warnings that it might be «uncomfortable», a code word often used by the faculty to mention pain. I chatted amiably with the nurse, and then drowsed.  When I awoke, I was delighted that the anti-nausea medication had worked, since I’ll need it during chemo treatments.

This morning I felt in fine form, but I was not allowed to shower (not until evening). My abdomen is blue as a Smurf on the right side, also the color of antiseptic. The incisions are very small and covered by two small steri-strips and traces of markers.

I’ll hear the results tomorrow— Wednesday— with a new appointment with the oncologist. To be followed… 

Thank you Phyllis, for the great translation! J

Soon I will be her

I started the week with outpatient surgery: extraction of the sentinel lymphatic nod, insertion of the port for the chemo to come. Before surgery, I had several injections of a nuclear substance that will help track any cancerous influence on the sentinel nod. That was a quick and unpleasant procedure, which however provided fun and colored side-effects on the following days. Who has not dreamed of aquamarine-colored pee one day or another?

Waking up from surgery turned out to be quite a process. I was not the only one in charge. In addition to my own, usual, self (polite, timely, compliant) my body insisted to be part of the conversation and I must admit, my body is rebellious and mulish. It went like this:

Nurse: How are you doing honey?

Me: I feel a little dizzy.

My body: this is awful! I protest! Nausea City!

Nurse: I just gave you some anti-nausea drug in your IV. Try and eat some of those crackers. That will help.

Me: thank you.

My body: If you munch even one of those fish shaped cracker, you will regret it bitterly.

Me: …sorry…

Nurse: That’s ok honey. We are used of patients projectile-vomiting all over the place.

My body: Told you so. I will do it again in the car on the way home, by the way.                           

The next morning, I was dealing with a sore upper-chest area but I had been able to sleep and I was no longer feeling sick. It was time for another kind of trauma: the chemo class. It could be sub-titled “Be scared. Be very scared”. This is about letting you know what to expect through chemo, a time to detail all the possible side-effects, and of course there are loads of them. I should expect discomfort, turbulent digestive system, over-sensitive skin, pains and aches. I am required to panic at any infection or cold and get seen by a doctor in the very next hours – or I may end up in intensive care, as my immune system will be weakened.  

I was utterly terrified when I left the class with Irvin. Yet there were some thought I could hold on to. This will last for a few weeks. Some time in spring, maybe by the end of April, it will be over. I met a friend in the lobby of the oncologist clinic. She gave me the biggest hug – so sorry to see me start a journey she knew all too well. But she is cancer-free now and was coming for her regular follow-up. Soon, I will be her. 

A one-on-one fight

Last Sunday, I went to church for the first time since the cancer diagnosis. I received hugs and comforting words, as well as tears from some who were caught off guard by the news. The congregation surrounded me and prayed for me, their hands on my shoulders and head while Irvin anointed me with oil. I felt supported by those prayers as by a network of imperceptible threads of lights. I am not alone in this unwanted trip.

Two days ago, I received the results of all the MRI and scanner I went through during the week. The nurse took my blood pressure. She seemed surprised. “Do you have high blood pressure?” she asked. I smiled.  “No. I am scared.” She looked skeptical and started all over again. She probably found the same result as she did not say anything else.

The results were good. No additional tumor anywhere – except, maybe, a small one by the location of the original one. Tomorrow Monday, I will have an outpatient procedure during which the “sentinel node” will be extracted, the port for the chemo will be inserted, and some additional tissue will be taken out to check out this possible second tumor. If it is there, it will be swiped away by the chemo and the radiations anyway.

I felt the effects of relief, cascading sweetly in waves all evening. I am comfortable facing one small tumor, aggressive or not. There will be blood.  

Scrutiny week

This morning, it was PET-scanner time, which required an almost superhuman effort. I was not allowed, in the previous 24 hours, to consume any dairy, sugar, fruits, starch or caffeine. No bread, no cheese, no yogurt… no chocolate… as I told Irvin “the foundation of my pyramid food is taken away from me!” I nostalgically munched on lettuce and roasted chicken… 

The exam requires also being injected with a radioactive substance. It is not painful, but I got mildly concerned when I noticed the syringe had its own lead armor.  The scanner device looks identical to the MRI one, but it is silent.

Making comparison was easy: I had a brain MRI in the afternoon and even with ear plugs, yes it was strident. Since I had time on my hands (the exam last 45 minutes, in 2 parts) I tried to categorize the diverse noises. There was first some techno beats, then a symphony of alarms, then a conversation between pneumatic drills that would even shake the whole engine once in a while. There were also isolated weird noises in between, slamming of doors and the occasional drunk frog croak…

I appreciated the presence of a small mirror which allowed me to see outside while I was still in this big tube. Wherever we are, even for less than an hour, it is good to always be able to see the light at the end of the tunnel.