I have been meaning to post this but was distracted with all the craziness going on around here between my chemo, christmas shopping, helping out with my neighbor in all sorts of ways, that I am only now getting back to edit it and probably add more content at the bottom. So be prepared this could get long:
I felt amazingly well after the chemo treatment last Wednesday (this was my first chemo treatment end of November just before US Thanksgiving Day). In fact, so well there wasn’t anything I didn’t feel like doing. I was even surprised how easy it was to give myself injections. Other than a bit of indigestion after eating starting Friday evening, my energy levels and health felt well and Tums helped with the indigestion. Then Monday morning came and I woke feeling bone tired, so fatigued I didn’t want to move and my appetite almost non-existent due to feeling changes occurring in my mouth.
Yesterday was a bit better but no matter what, I had to do things in small doses. Heating up soup for lunch meant resting afterwards. Or taking a shower, in truth I waited for my daughter to come home from school before I took my shower just to make sure I didn’t need help. That is how deep the fatigue felt as though I could run out and just not be able to do anything but sit until I felt strong enough to get up again. That would not have been good in the shower so I waited. In the end, I didn’t need her help but it was good to know she was there if I needed her.
Today (Wednesday), my energy level is better. Not completely back but at least I can do more than one thing at a time without having to rest in between.
As I stated this was after my first chemo treatment. I just had the second treatment this past Wednesday 10 December. I started the injections back up on Friday and so far though I didn’t have the huge energy surge I felt after the first chemo treatment, I do feel good, very normal in energy for now. I expect around day 5, Monday and Tuesday to have another deep fatigue episode and if so it will be good to know they are predictable so I can plan for them.
I am actually amazed at the difference in what I expected during chemo with how I really feel. After the initial apprehension of not knowing what to expect, that has pretty much subsided. I only take diazepam now for the nerve discomfort I sometimes still feel behind the expander in my right breast. Two days before my first chemo treatment my plastic surgeon did add 60 cc of saline to the expander and it was not painful at all and the amount isn’t that noticeable except when I touch it and can see the fluid shift around. He gave me instructions so I could go to my family doctor to do the rest of the injections for expansion however my family doctor doesn’t keep saline in his office, and my oncologist doesn’t want me going to a walk-in clinic to have them done, so I’m down to trying to schedule appointments with my plastic surgeon to coincide with my chemo treatments. He has to do them when my white cell count is high enough so the plan is to do them the day before each chemo treatment but I have to get copies of the lab to show my white cell count or make sure he gets sent a copy each time. Right now my next injection won’t be until January due to the plastic surgeon being out of the office over the holidays. My next chemo treatment is on December 23rd, with the lab and visit with my oncologist on 22nd December. My first round of chemo treatments are every two weeks and they only take about two hours at the clinic. The next round will be different and take about five hours at the clinic. That one will have me a bit nervous at first because it can have some severe allergic reactions so the reason for the long stay is to give anti-allergy type meds prior to the chemo to try and avoid any allergic reaction. This one will be tough on L but hopefully she will be able to work from the clinic so she doesn’t end up losing a whole day of work to sit with me. She has been a great friend to be there for me and we have become rather close in the process.
Friday, L had a hair appointment and by Friday I was losing so much hair in the shower I asked her to see if her stylist could fit me in to shave my head while L’s hair coloring processed. She did and we had fun with it. L says I now look like I have chosen an alternative lifestyle since I run around bald most of the time around our places. I’m learning to tie scarves and I knitted a chemo turban wrap from Elann’s knitting pattern I found online through Etsy. You can find it here. This is a great head covering for the cool weather here and I want to make it in a lighter weight yarn for wearing inside or when it is warmer out but still needing a head covering. I actually like having my shaved head. I think it makes me look younger too. The stylist also trimmed the wig I had gotten from the wig room at the clinic so I may wear it more often than I originally thought but so far other than wearing it home from the salon I’ve been wearing scarves or other head coverings. I do want to find a wig shop and see about having one professionally fitted and a better style because I am considering once my hair grows back, keeping it super short and wearing wigs. After finding out how easy it is to take care of a wig and no hair styling needed, just wash, shake and let dry over night and then wear and only wash about once a week, well why not, especially with the trouble I have with hairstyles. My hair tends to flip in opposite directions on either side due to the way it grows. The stylist even said I have a rather strange growth pattern which makes it flip in different directions and she could really see it when she shaved it.
My daughter is now talking about cutting her hair short too. Her hair is long and very curly. Combing it out is a huge pain and she has to do it in the shower with lots of conditioner. Now she wants it short where she can just wash, pick it out and go with soft curls over her head. I told her we could definitely give it a try and if she doesn’t like it she can always grow it back out but I think it will look cute and she will love it once she does it. So we are planning it for her school break so she has time to learn to work with it before going back to school.
I asked my daughter if it would make her feel uncomfortable if I chose to go out without anything covering my bald head and she said yes. I had thought I might would do it only because I feel so comfortable doing so but I won’t make her feel uncomfortable so in public I’ll wear a head covering. I’m not looking for sympathy. I just want people to see someone embracing their treatments and facing it head on and not afraid or wanting to hide. Don’t get me wrong I’ll always have fear that it might come back or metastasize somewhere else in my body but I’m not running or hiding from what needs to be done and I talk openly about it with people who are willing to want to know.
I do wish other parts of my life would pick up, like meeting a dominant however I also know that the timing is most likely not right. I also think I couldn’t give him what he would need and it would all be about me. One sided just wouldn’t be good or if I tried to focus on him then it would take too much energy away from what I would need for my health. I have always believed things happen for a reason and they do so in proper ordering and timing. I’m learning a lot right now, mostly about me, how to ask for help, how to lean on others and also how to share my emotions as well as being there for others who need help too without feeling obligated to do so but to actually enjoy in helping out and receiving their help in return. I just can’t explain how this has all changed. I feel more alive now than I have my whole life which is odd to say, but I laugh more, and yes I even cry more and it is all good. I even laughed with my oncologist during our last appointment telling her how I can now cross my legs normally because of all the running up and down the stairs I’m doing between mine and L’s place. My legs have lost some weight and toned up, while my upper body could lose more weight, it will come in time and my oncologist said of her patients who stay active they come out much better on top following their treatments than those who baby themselves and don’t do much or aren’t active and in many cases they are in pitiful shape afterwards, so my plan is to keep up the stair climbing and the walking of our dog as often as I can.
I am trying to remember what else I wanted to say about how this has affected me. The above is so positive but I want to also let people know some of the other things this has changed which could be perceived as negative which most people might not think about. Because of the lymph nodes removed from my right armpit area I have the exposure of possible swelling in that arm for the rest of my life, and numbness in my armpit will remain forever, so I have to be extra careful of cuts, scrapes etc, so no more razor blades under that arm. Well, that being said, now that I’m on chemo, my immune system is compromised which means extra care for my entire body and being careful of cuts, abrasions, scratches etc, so no more blades, either the creams that dissolve hair can be used if it doesn’t cause irritation to the skin, which they possibly could due to extra sensitivity during chemo so they are not highly suggested and rather a good electric shaver is important for shaving. I hope the one I purchased will do the trick. Then I also have to be careful around anyone who gets sick, keep my distance, let them know to keep their distance, preparing and sharing food has to be done with forethought not that I’m dangerous to others but that others can be dangerous to me. In other words no double dipping.. lol.. and being careful again during food prep or even drinking hot drinks or food to not burn my mouth. The fast growing cells are what become overly sensitized so mouth sores could become a problem, so I do sea salt rinses when I feel the need, baking soda and water can also be used but no over the counter mouthwashes because they are too harsh. Special care in applying makeup has to be considered by using disposable applicators so there is no cross-contamination between eyes when doing eye makeup like mascara. So far I haven’t lost my eyebrows or eyelashes but the possibility exists and one of the classes I went to taught me how to apply makeup to help give the illusion of having them. Going to makeup counters and letting someone apply makeup has to be done with forethought, go early when their stations have been cleaned and sanitized or make sure they know they need to sanitize everything well. Infections are a huge concern for cancer patients undergoing chemo due to the lower white cell count. In my case it is still a concern even though I’m taking injections to help rebuild my white cell count between treatments there are periods when it is low and I am vulnerable. My way of thinking has changed and subconsciously I’ve become aware of it at a deeper level, so deep in fact it has changed the way I feel in regards to the foods when I just think about eating them. Junk food just doesn’t have the appeal it once did. Fresh fruits, raw and steamed vegetables, rice and less red meat, more white meat and fish has become my preference and will inspire my appetite though at times I still choose some frozen items for those times I can’t stand and do a lot of prep work as well as for my daughter since she can follow simple cooking directions.
So, I’m finding life changing for me in so many different ways and most of it has become a natural process of what I’m going through, which feels like a good thing and not negative at all. Oh yes and for the first 48 hours after a chemo treatment, flush twice when I use a toilet.. lol.. And of course timing the anti-nausea meds which I’ve been keeping up on and so far no nausea, a bit of constipation from them but the way my digestive system is a little bit of constipation for me is probably a normal bowel movement for others and I’d rather have it than diarrhea which so far has not happened. They say if you have constipation you won’t have diarrhea because you can’t have both at the same time, you can however have one follow the other so I’m cautious about using any laxative which so far I haven’t had to do.
For now I think that is it. I believe I’ve covered most of it other than L will be gone during my next treatment and another friend said she wants to step in and go with me however if she can’t it won’t be a huge problem because I feel so good during and after a chemo treatment I can and have driven myself to and from the appointments with L in the car with me. She told me after my first treatment that no one would have ever known I had just come from getting chemo. I think she has been more nervous about all of this than I have been.