Most of you know I am a Hodgkin’s lymphoma survivor. If you don’t and haven’t read my few posts on the subject. Read here for more:
This is an update on my continuing good health.
Part of good health is a state of mind and faith. By faith and good works I mean believing in that mustard seed. I’m posting this because there are a lot of new lymphoma patients who want to hear about long-term survivors in my FB group, the Lymphoma Club. It’s not a club my body wants to belong to. No choice in that. But my soul, and my mind are gratefully transformed. Only because I’ve chosen to become more spiritual and reaffirm my ever growing faith.
This beautiful healthy body I had taken for granted is not happy about being in the Lymphoma Club. It isn’t an easy journey. I’ve heard a lot of people say, “it is what it is.” I use that in one of my novels. But I was angry about that phrase when I heard it used recently, not on the L.C. site, btw. So I’ve decided it is what it is, but also: “it is what I make it.” I can make it worse, or I can make it better.
I had periodontal disease before cancer so I was very afraid of what the 4 weeks of radiation would do to my jaw, salivary gland and teeth. I have the other gland and am still salivating. Contemplating radiation I figured I could take the dry mouth meds if I had to, because I had to get rid of the cancer. Most of my friends know that I had a very difficult time deciding on using radiation. I won’t know if I made the right decision. No one does until the percentage falls off and you either survive the treatment or fall off in the margins with the gamble. I had a 5 inch mass wrapped around my heart, sternum and vessels. There was no other treatment available to me at the time and I decided to use the full recommended treatment that had been around for many decades. It may not be the right choice for everyone. I don’t look back or wonder on my decision because certain things fell into place that helped me make the decision to take that leap. People I talked to who’d had cancer and their experiences helped me to make that decision. One, not taken lightly.
After radiation my gums looked a mess. It was frightening and I didn’t think I was covered under the insurance I have for dental care. So I used the only thing I knew how. The salt/baking soda recipe my nurse oncologist had taught me. And gentle brushing. I’m amazed out how healthy they look at times now.
[I was told I wasn’t covered by well-meaning friends. It turns out I may be covered. I’ll find out soon enough. Then I’ll be able to get some standard dental care.]
Prior to my cancer diagnosis I had given up on my teeth because no matter what I did it didn’t help. Well. I had to take very good care of my teeth during chemo and boy do I wish I’d taken better care of them prior to chemo. I use a salt baking soda mix my chemo nurse taught me. I still use it post chemo because my gums are so soft. 2 months post treatment the floss cut into my gum where I had radiation and I almost lost the loose tooth; I probably will eventually. I’m very gentle with my teeth and am going to try to save every one of them. My radiation oncologist did not sugar coat the possibilities but in Faith I hope for the best. I’m hanging on to that tooth until there’s no hope to keep it. Lol! When that tooth became inflamed I used salt and baking soda rinse to get rid of the bacteria and pain. It worked.
I was able to get a free exam today with x-rays. The dentist said I have had some bone loss in the jaw, not all due to radiation, and may lose more than the two that are loose. But like I said. Better than cancer. I’m going to look into extreme yoga and acupuncture as well as standard dental care. In the past Kundalini Yoga has helped relieve the symptoms of TMJ pain and acid reflux, in my opinion, due to the breathing techniques and the philosophy of being one with the Universe, i.e. letting go of anxiety over ego and death. “Spiritual Enlightenment”. Let me know what your experiences are with this.
I don’t give up on my teeth and gums just because they are weak. I brush gently with an electric tooth brush, and like I said the salt and baking soda rinse, per doctor’s orders. Some people on special diets may not be able to use salt.
I do take vitamin D with Tums. The calcium is so the D will metabolize. I take magnesium and B complex for the peripheral neuropathy. I was actually already on D and magnesium prior to the diagnosis but not quite so regularly as now. I’m on fish oil to prevent depression but was also on that prior to diagnosis. These seem like boring details but may be helpful for some people experiencing “extreme fatigue, impaired memory, muscle weakness, depression, increased sensitivity to cold, anxiety, etc. in spite of treatment being long over”. quote from Lymphoma Club FB.
Re: Chemo brain. I was forgetful before cancer so I’ve reduced intake of plaques in my diet. I haven’t noticed any difference, except that my memory has improved through due diligence. My doctor said that chemo brain doesn’t always happen and I decided I wasn’t going to get it. I had too many things I was in the middle of when I got the diagnosis. I had two e-books coming out and a lot of editing to do. So, currently I refuse to have any kind of chemo brain fog. I’m just too joyful and busy.
I did NOT like the cold weather these last 2 years. Looking seriously at a warmer clime. I’ve been having pain in my left shoulder, where I got a lot of radiation, and thought it was peripheral neuropathy. A friend’s phys therapist said it didn’t sound like that so I thought maybe it could be onset lymphedema, due to the radiation on the nodes there, so I’m having it checked out. My hair does not grow back on that side, under the arm. Don’t have to shave though. Lymphedema can be reversed if caught early; please correct me if I’m wrong, just read that on wikipedia. If you don’t know it, lymphedema can be very debilitating if not caught early, and post cancer care is not always available everywhere, so people, usually women, go a long time before they realize they have lymphedema. (loosely quoted from other sources) It helps to be knowledgeable. It helps that I like to read.
I experienced a mysterious heart pain in the pericardium region that lasted about 24 hours. I say that because except for a racing heart beat and about 7 out of 10 pain level they couldn’t find anything wrong on EKG or labs. So my regular pain meds that can exacerbate PVCs and cause the heart to beat faster were switched out. One was a sinus headache medicine, the ingredients of which may increase heart rate. And the other was a product used for period pain, even though I no longer have a menstrual cycle, it was my go-to pain relief for when I had aches and pains; one that I’ve used since age 16 or so. And the sinus meds I don’t know what I’ll do come spring when allergies kick in; I’ve used that product since age 18 or so; that’s a long time. My doc said I should use acetaminophen instead, and an gua expectorant or some such instead of the sinus meds. My echocardiogram stress test says my heart is above average healthy, probably from walking the dogs every day, even during chemo, except when it was too dark, or cold. I’m also not allowed to drink coffee, especially Frappuccino drinks anymore. Why is it that the good things in life are bad you? ;-(
But through it all I got two 300 page novels I had written prior to my diagnosis out into the world. One was edited while on chemo. And I’ve recently completed the first issue of my science fiction magazine, T-Rex Moon. If I can’t move from this cold weather by next winter I’m taking up cross-country skiing. I fighting to stay fit and to be Joy even in the darkest hour of the day.