Cold Capping Update #2

Taxol is a chemotherapy drug that causes hair loss. It occurs somewhere 2-4 weeks after an initial dose. After so many drugs, after losing my hair twice previously, and even while I used a cold cap, my naiveté continues to surprise me. I got good results while on Doxil. I hoped, no – I expected it to continue when I switched to Taxol. I had passed the two-week mark on the new drug and was doing okay.

Then the three-week mark hit. More hair came out in with my morning comb out than I had experienced. How odd. Then with the night combing. Hmmm. I started documenting it. The pattern continued and got worse and worse with each day. It was matted in the morning when I woke up and that never had happened. As gently as I combed, out more would come. I commented to a friend that at this pace I wouldn’t have any hair left by the end of January. The writing was on the wall. Hair was on my clothes, on the floor, and in my food. Hundreds of strands in my comb and on the bathroom counter became thousands. I filled waste baskets.

Losing hair is a visual hopelessness. There wasn’t anything I could do to make it better.

This pattern continued steadily for three weeks. I stabilized by February with noticeable damage done to my hairstyle. There were bare patches on my crown, in the back, and on the sides toward the front. Not much was left if I were to pull it back into a ponytail or put it up. It was flat, unhealthy, and unattractive looking. I looked sick. I loved donning a hat for outside winter fun. I was skilled at arranging it just so to pull off a normal looking photograph taken from the front. People said I look great! People lied.

Some people photograph the clumps of hair and growing bald areas. I’ve seen the pictures. My personal moments will haunt me and I don’t need a visual reminder. No one needs to see my hair to make it real for them.

So, what good is the cold cap? Note it worked impressively well while on Doxil, not so well on Taxol. The recommendation is to continue because it can speed regrowth. Other users (and the nurses too) do confirm that regrowth is faster. Of course, that’s the recommendation because the company makes money with continued use. The thing is I’ve paid for my maximum capping sessions and anything over that is now free. I still have to endure the discomfort and extra time involved. Happily, I have seen some hints of regrowth from the top. The sides might be filling in, but this is even slower. I’ll stick with it.

One bright side is the first ten minutes with the cap is more durable. It’s no longer the worse possible feeling I can imagine. It’s no big deal. It almost feels refreshing and I kind of like it. It all goes quickly like clockwork. After 19 capping sessions, this is my norm.

I wonder at times how much more can I take. Apparently, there’s always more. I loved having hair again. I didn’t quite like having it so long, but that isn’t a problem anymore. Others’ comments that I have cute wigs are true. These comments also minimize a loss they’ve never experienced.

I just keep losing and I don’t know how this is my life.

I should be grateful I haven’t reached my breaking point. Should be. I think I’ve been broken repeatedly. My breaking point keeps getting reset to something more devastating. I should be glad it’s “only” hair. Again, should be. I am, but it’s my hair. Without it, sensitive comments absorb more quickly though my scalp and go straight to my emotions. I should remember it will grow back. Another should. I was without it for years the last time. This is now one more uncertainty in my life. Yes, I have bigger worries. I know I don’t need it, and I know others have been where I am, but I still need to hear I am heard. I need that ounce of validation that my tears and grief are validated. I need a little grace in my world where I don’t feel much.

I felt anger with this development of noticeable hair loss. I felt angry that I looked sick. I felt angry that the cold cap hasn’t worked better for me. I felt angry this happened again. And I still feel angry at comments that have come and will come from others. To be blunt, there is understandable ignorance from those who have never experienced chemo induced hair loss. I carry the burden of a teacher in how I choose to respond to well intentioned, yet ignorant, comments such as: It’s just hair. It will grow back. You have a wig. You look good. I know all this. It’s just hair and it’s not. I do look good in my wigs. It doesn’t mean I want to wear them. A part of me would LOVE to request that people forego coloring their hair. This raised such distress early on in the coronavirus lockdown. Maybe everyone I know needs to shave their head and keep shaving it to experience an inkling of what is one of the most emotional side effects from chemotherapy. Would those actions help me? Mmmmm . . . maybe.

Maybe, maybe, maybe.

People would sooner have regular colonoscopies.

There is such attachment to our outward appearance. Even to temporarily let go of that with what would be a selfish suggestion on my part would provoke instant emotional resistance at the possibility of not having hair for a relatively short period of time. No, I don’t expect anyone to embrace gray or baldness to prove anything to me. It still would not be the same. Just my ego acting out.

At this point in May, I’ve lost about 75% of my hair. I’ve opted for a short cut to take off the stringy strands that made me look sick and unhealthy. It’s more of an even cut and will support a better look as hair continues to fill in. I also colored it on my own a few days after the cut. Both are not to be done while cold capping because of the added stress it puts on the follicles. Big shock that I went against recommendations. It just isn’t realistic for me not to ever cut or color it again because treatment isn’t going to end for me.

That’s the update. I am a supporter of using a cold cap if it is an option for you. It digressed and wrote a fair bit about my hair and hair loss. They go hand in hand. The first photo was before Taxol took a toll. The middle photo doesn’t quite do justice to my daily look. Even in this photo, I was finger styling it and moving more of it to the front so it looked like I had more. I feel very comfortable with my short cut and I’m happy enough with this look.

We all need support when we’re down, upset, or frustrated. It can be an offer to talk where one person truly listens. It can be an empathetic comment where there is no attempt to fix anything. Sometimes an emoji is enough to convey what words miss. I find regular texts from a couple friends reassuring that someone cares. What words are supportive? I hear you. You are not alone.

Treatment Day Lessons

My treatment for metastatic breast cancer happens at a teaching hospital. It isn’t unusual for a resident or intern to accompany my oncologist during my office visit. I have become a quick study as to who seems confident, empathetic, and knowledgeable in a few short minutes. Some interact more; some merely observe. These residents come and go.

What I failed to realize until a couple of weeks ago was just how much teaching goes on between my treatment nurses and myself during treatment and from that experience. We learn different things as we teach together. Below is a description of what I took away from a recent treatment.

I’ll start with labs. My port had not yet been replaced at the time which meant an IV line was placed in my arm for the blood draw and chemo. Both arms have been used/abused generously from a hospital stay and a previous treatment visit. My port was so handy for my personal comfort and because of my hard to find veins. The IV Team was paged, and they came to detect a vein. I love that there is a team for this sole purpose. They rolled in with an ultrasound on wheels and searched for a vein. A few phlebotomists huddled round and we all watched. A perfect black round shape was found that was described as a juicy vein. It seemed newsworthy to the other phlebotomists that two different needle sizes were available to access veins and that I needed the larger one inserted. Now they know. I asked how long ultrasounds had been used to support vein detection. The answer was about 10 years. I couldn’t imagine what it was like before this when someone would be poked relentlessly multiple times to find a vein so blood could be drawn and an IV line set. Pure torture for someone like me. I also learned fewer people chose ports ten years ago. Now, the reverse is true.

Patients and nurses also have a lot to teach and learn from each other.

I was fortunate to have one of my favorite nurses assigned to me. Libby had only been my nurse once before, but I liked her instantly. She was thorough, caring, and interested in me. It didn’t hurt she thought I looked much younger than my age. Flattery will get you everywhere, right? I was thrilled to see Libby open the door to my room since the nurse who had showed me to my room and took my vitals struck me as unsure about the equipment. I decided she was new, good hearted, but new.

Libby had done her reading and read the medical notes from my recent hospital stay involving the leak in my port and a blood infection. The teacher in me always finds someone who does their homework impressive. I learned Libby had once been an education major herself before switching to nursing. Anyway, she sat down and wanted to hear more about exactly what happened and how my problems were discovered. She sat down to listen. That action also impressed me. When nurses have this information, it helps them look for signs and symptoms. I was more than happy to share information that could be helpful to other patients.

Later, Libby told me about some information that was shared with the nurses about an anonymous patient that had swelling the size of a golf ball on her neck where the cause was unknown. Guess who that was? I rather bashfully admitted that was also me. I felt like a problem patient. Yet, I was pleased that the other nurses had been made aware of the situation and what was done to address it. Furthermore, I learned that the special triage nurse who had come in to examine my throat and neck that day had questioned if the port was working effectively when an allergic reaction was thought to be the cause. I remember her coming in to assess me but had forgotten she questioned my port. It was ruled out because my port still returned blood. All this is important because it can help them connect dots faster in the future. I never realized I was being so useful by having all these problems. I sure know I’ve learned things I never thought I would.

One thing I wanted to happen during my visit was to have my sutures removed from my port removal. There was a small suture drama days earlier where interventional radiology told me still having these could pose a problem for them placing a new port. It was completely absurd and another long story. When I finally spoke to my surgeon’s nurse, I asked her if I could get someone to remove them while having treatment. I would be at a hospital after all and it shouldn’t be that hard, certainly not enough of an uproar to uproot plans. She agreed. Another nurse came in before my treatment started and took them out in minutes. It was so simple that I almost thought I could do it myself, but my small scissors and tweezers aren’t sterile and I’m not quite that crazy.

Finally, the original nurse who had shown me to my room returned. She had returned with some questions on cold capping. I’m thinking I must have a reputation for being approachable and somewhat informative. Her questions were pretty standard involving timing for post-cooling and then thawing. It’s different for different chemotherapies received. If it helps someone learn that can support other patients, I’m all for it.

Collaboration in patient care benefits everyone, including future patients. I never really thought about nurses possibly learning from me. Now, I realize it’s exactly like how my students taught me as a teacher. I learned tons from them. My role as the patient has similarities to that of the student. We all work together. My treatment day was a phenomenal learning experience for me and a good example of teamwork where I’m a valued member of the team.

Allergic Reactions to Chemotherapy

I’m allergic to tree nuts and people nuts. It’s much easier to avoid the tree nuts. I wonder (often) if I’m the nutty one. Perhaps these are stories for another time. Today, I share what happened at a recent treatment visit.

Chemotherapies, hormonal therapies, and targeted therapies can all cause allergic reactions. This is true for just about any medication. Mild reactions involve rashes, hives, and itching. More serious reactions include nausea and vomiting, difficulty breathing and swallowing, and swelling of the face, eyes, or tongue. Anaphylaxis is the most severe allergic reaction.

I switched to a new chemotherapy last month – Taxol / paclitaxel. I received it over eight years ago as part of my original regiment. I have mixed feelings about returning to Taxol. On the plus side, it worked incredibly well for me. On the con side, I experienced a lot of flushing and I was hot and cold at the same time. I had insomnia. Lots of nausea. There were muscle and joint aches. A heavy schedule of steroids accompanied this regiment and those caused increased appetite and weight gain. I looked puffy and put on a good twenty pounds. Fatigue, fatigue, fatigue. Of course, there was hair loss. I even wound up in the hospital due to a nasty pneumonia I managed to develop with shingles at the same time. I’m giving it another go. See what I mean about possibly being the nutty one?

I took my large doses of steroids at 10 PM the night before and 4 AM the morning of chemo. Surprisingly, I didn’t have sleep trouble as I thought I would. I figured I may as well stay up when I took the early morning dose since food was recommended and I doubted I’d fall back to sleep.

I spent my extra time with a good weight and cardio workout, followed by walking. I had over two miles in before I left the house. I wanted to make the most of feeling good before feeling crappy and more crappy took over. I felt like a boss going into my day.

All went well at the hospital. My labs were excellent, the best they’ve been in some time. My office visit was positive and upbeat. A medical assistant not assigned to me came in and spent a few minutes catching up. I hadn’t seen her in a while and she just wanted to say hello. Small kindnesses like this are so appreciated.

Treatment even started fine. I liked Brittany the nurse who was assigned to me. She attended a hot yoga event I planned as a fundraiser much earlier in the year. It created an instant bond for me. Those bonds are important because I know I am thought of as a person and not just a patient. I was given a bed which is standard for new drugs in case there is a reaction. Not only did I have a bed, but I got a big room with plenty of space for all my stuff that comes in tow with me. I even had a private bathroom where we could put on my cold cap. I felt I had a suite for my stint at the chemo spa.

I use a cold cap and hope to save my hair with it. I pre-cooled longer than necessary at my request because I wanted my scalp to have a little extra boost. A couple of other nurse friends popped in to visit. Denise gave me a beautiful painted rock with a chickadee on it because I had a rough go the last time I was there when I learned I had to switch drugs. She requested it from a friend who paints rocks not knowing chickadees are my one of my favorite birds. This dreaded day was going far better than expected.

Brittany returned to start the Taxol. The protocol followed is for the nurse to stay for the first 15 minutes of the total 60 of the infusion. An allergic reaction would most likely happen in that time if one were to happen. I had no symptoms. I didn’t feel hot or itchy. My breathing was fine. Swallowing was fine. All my vitals were excellent with my oxygen in the 98-99% range. I attribute it to the merits of a solid workout. Nothing was abnormal.

As required, I was given lots of Benadryl through IV. It’s also a precaution for a potential reaction. It made me drowsy. The only comfortable position for me was to lie back with pillows propped around my head. My head was titled back far but it was comfortable, and I felt I might doze for a good portion of this process. So much the better. The bowling ball of a cold cap I wear on my head diminishes most feelings of real comfort. I finished my hour infusion and moved on to the post-cooling phase. I got unhooked from the IV pole and moved to the nearby chair so I could catch up on some laptop work. It would pass the 60 minutes I needed to cool with the cold cap.

Toward the end of this time I happened to touch my throat and felt a bulge. I read later in my treatment notes it was the size of a golf ball. There was also swelling that seemed to extend to other parts of my neck. Uh oh. Immediately, I pressed the call button. Brittany agreed it was not good. I answered lots of questions. I had no other symptoms. My breathing was good and my vitals were all still excellent. I could drink water smoothly without swallowing difficulties. My voice was a little scratchy. That was possibly bad, but I make an effort not to hydrate tons while there because I don’t like being unhooked from the scalp cooling machine for even a few minutes to use the bathroom if I can help it. There was a plausible explanation for my voice not sounding like usual.

A wrench was now thrown into an otherwise successful day. An allergic reaction was the likely cause. It didn’t seem too bad. I cried briefly because some stupid thing always seems to happen to me. I was no longer a boss. I was hooked back up to my IV and shot up with more steroids. No Benadryl as I drove myself. I was observed for an hour and there really was no change in the size of the bulge in my neck or swelling.

Over the course of that observational hour, I thought about what I had at my disposal to speed things along. I had ice in my lunch bag. It was too hard and unmalleable to my throat. My frozen drink was still cold and the perfect size. I could roll it from the top of my throat down and it felt good. I thought I was getting results after 5 minutes. I knew I was after 10 minutes and the swelling had gone down.

Brittany returned with the decision that I could go home but I needed to call 911 if anything changed. I told her I had iced it and we agreed the swelling had gone down a lot. I was glad to hear I could go home because I had also decided I was leaving. I arrived by 8 AM and didn’t leave until around 5 PM. I was exhausted, hungry, and confused.

I wasn’t really sure what had happened. It just didn’t fit the mold for a classic allergic reaction. Everything was back to normal by 7 PM that night. I’m weird in terms of unusual or delayed responses, but I still don’t think this was one. There were no internal symptoms (other than the swelling) that showed up like difficulty breathing or swallowing. My vitals remained normal. I figured these would fluctuate if I were allergic to something. The timing was off. Ice wasn’t going to resolve an allergic reaction. Drugs would. Plus, pretty much the exact same thing happened the following week during the pre-cooling phase before Taxol was even given. My money is on the cap and the chinstrap tightness. After a discussion with the capping company, they agreed improper positioning of the chinstrap was the likely cause. My bad. It would be lovely to have something like that checked by qualified staff. The mask covers the strap, but still.

The small possibility exists of something going on drug wise that no one can figure out. What happened wasn’t desirable at all, but it supports two common phrases in the metastatic breast cancer community: There’s always something. And the something can always be worse.

I seem to have my share of somethings.

Thoughts on Oncology

Doctors’ roles are essential in healing.

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They should not be minimized or discounted. Cancer research will someday find a cure for what has affected us personally and our families. I am in awe for the dedication and care I have received. Traditional western medicine is only one route to choose. I know many who have stuck to this road with little question if something additional should also be done. Maybe they didn’t need or desire anything different. Maybe they didn’t know they could ask for anything else. Cancer was a six-month detour that blurred more with every passing year. It became part of their past.

However, if you only drive down Main Street, you only experience one part of a town. Side roads and rural areas are well worth the ride. They offer something different. You don’t have to travel only one or the other. My opinion is both are necessary to live well and/or be cancer free. You are the patient and in control over decisions that affect you. My healing plan consists of many side roads and rural areas that have made a positive difference for me. I am the common factor and pull it all together.

It has been so much more than a six-month detour for me. Parts still have blurred. I have traveled on many roads to get where I am today.

It seems strange that I haven’t blogged much about chemotherapy or my oncology appointments. Chemotherapy has been a focal point for far too long. It sucks energy and manifests more physical symptoms than I care to list. It sustains life while it kills cells. Chemo is reassuring and comforting in its own way. It ranks high as a huge part of my healing plan. I have hit my 100th treatment. That’s pretty significant. It isn’t a celebration, but I am checking off the box and moving on. I am still here.

There are so many other aspects in addition to active treatment that I think are also important to an integrated approach to a cancer healing plan.

A strong doctor-patient relationship is vital for my living as healthy as possible.

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The relationship I have with my oncologist is a really good one. He deserves credit for sticking with me, listening to me, and working for what I want. He knows how I feel. Yes, I’d love to be someone who visits her oncologist once a year, and eventually less than that, but it’s not the kind of survivor I am. I’m getting active treatment. I go to my doctor a lot. Sometimes it means I may be a pain in the butt. I do get all my questions answered. I even come up with some good ideas from time to time. The good news is my oncologist doesn’t have a chance to forget about me. If I don’t speak up for me, who will? I am my own best advocate.

Oncologists differ from one another. They’re human just like the rest of us. I met with a couple oncologists at Mayo Clinic in Rochester, MN, shortly after my initial diagnosis. Overall, they agreed with the treatment plan suggested at Carbone Cancer Center in Madison. Mayo was more open to surgery options. I liked them quite a bit but it was just too far a trek for regular care. I had top-notch care a few mere miles from home.

A couple of years ago I sought out another second opinion within my provider network and it wasn’t very helpful. It wasn’t hurtful either, just not worthwhile. This oncologist let me know what his opinion was on my options. I let him know what I thought of his limited research. He was not open to complementary cancer supports. I was not a good fit with this oncologist. In my opinion, he defines healing with a very limited scope. Every once in a while I see a clip of him on the local news. He has a great reputation, but I am so glad I have the oncologist I do, who also has an excellent reputation. My position is that healing includes many different aspects that work together.

I’m going to repeat that: Healing includes many different aspects that work together.

No one heals in a sterile petri dish or test tube.

My health journal helps keep all my medical information together.

A health journal has been incredibly useful for my oncology visits. It really helps with dates and specifics as to how I’m feeling, my questions, how and when medications were tweaked. I am a planner. I make the most of the short time I have with my doctor. Sometimes it isn’t so short, but again, that’s the kind of survivor I am, and I’m going to take the time I need. My health depends on it. I believe one reason I’m still doing well is because I’m able to keep really detailed notes to report to my doctor and have one place to keep all my information.

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I’m also more of an anxious person than I used to be. Cancer and anxiety go together. Keeping a health journal eases some of my anxiety because it gives me power. An added benefit is the built-in memory that naturally exists with documentation.

Ask questions. A short office visit doesn’t suffice for what I need to feel as a satisfactory visit, even with my health journal in tow. It wouldn’t hurt if office visits were about ten minutes longer than they are now. The oncology nurses are good resources in getting word to your doctor, as is electronically messaging your doctor through MyChart or any similar online technology. I am important enough, and so are you, to have your questions and concerns answered and acknowledged in a way that you understand. It is okay to disagree. I do believe everyone is there to advocate for your best care, but that doesn’t mean you blindly agree to something you don’t understand or have reservations about. There may be something even better for you.

I do believe the answer, a cure, lies in research and things like immunotherapies, targeted treatments, genomics, personalized medicine, and medical advances that haven’t happened yet.

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This is why research for advanced stage cancers is so important. More research dollars need to be allocated to advanced stage research! Click here for some suggestions. There needs to be a lot more access to better treatments and drugs that are more effective for those of us living with secondary cancer. We deserve access to advances in immunotherapies, targeted treatments, personalized medicines, and new therapies. It isn’t an option to run out of options. Keep telling your oncologist this over and over again. They meet with the other oncologists in their network to discuss cases. If they keep hearing these demands from patients, it’s more likely medicine will go in this direction.

Keep speaking up.

Patients can help steer these discussions by continuing to advocate for what they need in their office visit.

Healing and a cure are not interchangeable. A cured person may not be healed. Trauma, fear, and other physical or emotional issues can still interfere with living fully. Healing and a cure will inevitably overlap as healers, doctors, and patients work together. Stranger things have happened. Healing and a cure absolutely can overlap. I keep striving for both.

I am ever hopeful I will find a way. Always.