The world is filled with magic.
The sun rises each day.
Each day we do have
Just a little say in how it will be.
The magic is that we have the day.
And this moment alone is ours to be.
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Radoactive Iodine treatment
The pill come in a heavy lead container. The nurse has a glass of water ready. She suggests my son lift the lead container. He does. Then I do. We are both surprised just how heavy it is. She opens the container and tips the pill into my hand. I put it in my mouth and swallow it with the water. We go home. I am now radioactive.
I don’t feel any different. I stay in my room for three days. I drink lots of water. I eat sour candies and lemon slices. I try to do all the right things. I also like being in my room so it is not hard for me to be there. My son brings my meals and won’t come within ten feet of me. He doesn’t want to suffer radiation side effects. He also sets his alarm so he can bring me my coffee at 7 am. Thoughtful and important to me.
The radiology tech had made it clear to me that I was not to vomit for four hours following the pill. He said if I did they would not know how much radiation I ingested. What to do? I thought. I had no idea how it would be. I had been given a prescription for phenergan. The radiologist suggested I take it an hour after the pill. I did. No problems.
On day seven I have my body scan. It takes 90 minutes. It is not as bad as I thought. I want to celebrate this completion. I have been sick now for over a year and a half. This is a final step. It may be the final step of the first phase. I don’t care. I’m glad I’m here.
About the time of the scan I started having pain in my mouth, my throat and my neck. It rapidly progressed to constant pain. I had a bad case of inflamed salivary glands. My good doctor L. put me on a prednisone pack. It helped and it did keep my joints extra happy. Don’t suck on lemon slices as it apparently increases radiation to the salivary glands. Wish I had known.
I am recovering from everything. I’m hoping for a cancer holiday. I am swimming laps again to build core muscles and build endurance. Also because I love to and I do dream of the day I can return in another life as a mermaid in a warm lagoon with occasional visits from Nemo.
My scan didn’t show “any convincing distant metastasis”. It did show more cancer in my neck. So essentially stage 3. Better than stage 4. My endocrinologist plans to let the radiation finish working. In six months there will be another ultrasound and the thyroglobulin cancer marker. I am ready for the break.
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How to tell a charlatan
I met my first charlatan last week. I’m sure I’ve known other ones. A charlatan presents as someone who is an authority on a subject when in fact she’s not. She often times is looking to profit from her faulty information, but not always.
This woman approached me at a cancer class. She said my cancer was caused by an imbalance in my body. She could cure me. Doctors were clueless. Nurses were clueless, too. I really needed to go to her program and learn about the acid-alkaline diet. ( A friend had already given me a book on the subject.) I would be better. I would feel better. She didn’t have a card and mentioned she did a lot of other things. She wrote her info on the back of one of her other cards. Contact me, she said.
To me the fundamental sign of a charlatan is her attitude that she know best and that all the other resources in the world are bogus. There are too many good resources in the world. Each makes a contribution to our pot of well being. I value many. I instinctively discounted her because she discounted everyone else.
I love my rheumatologist and my endocrinologist. I am grateful to the hospital chaplain who leads my cancer support group. I am learning so much from my cancer yoga instructor. My pharmacist has gotten me through the complexity of my drug regimen. My physical therapist has been a god send. Add to all the support these wonderful people have given me are David Servan-Schrieber’s amazing book Anti-Cancer. It has been an excellent guide to help my mind adjust and come to terms with my situation.
Each person on my cancer team plays a different role. Each is valuable. No charlatans for me. Plus I can see them coming.
March 2014
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evolution of a cancer mind
On Thursday I go to the Caring Hearts Cancer Support Group. This is at the Presbyterian Cancer Center in Albuquerque. It runs in blocks of six weeks. Lunch is served and discussion is 1.5 hours. Since I have been going, the hospital chaplain has been the facilitator. She is excellent. I have benefited immeasurably from my visits.
The discussion turned to how we felt about our diagnosis. I never had the moment. I seemed to slide from one revelation to the next. I was not angry. I was too confused to be scared. I was always recovering from a treatment. I was exhausted and fatigued. My concern was having to spend my life in that state. I am inclined to believe what people tell me and they did say fine fine fine. First it was the severe rheumatoid arthritis (seven months to become manageable). Next was thyroid cancer. Not bad you will do fine. Next it was breast cancer(small but invasive) You will be fine. Next was more tests. More cancer. We need to move along with treatment. What does stage 4 actually mean? maybe not fine.
As you can see, it would seem I have had no opportunity to adjust my mind. However, as grueling and hard as it has been, I have. Each new revelation involved a series of steps. I am good at problem solving. I have great endurance and a very deep reservoir of optimism. My first thought is to investigate the situation, determine my odds, do what needs to be done and optimistically plod along.
I know from my experience that I have great faith in my ability to adapt to my situation and optimize it. I understand that the medical community can do only so much. I can do only so much. The rest is in God’s hands. It is good enough for me.
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breast cancer was next
Where have I been all this time?
November 5th I had a follow up CT scan and between April and November, I developed breast cancer. There was a quick response in the medical community to this development. The next Monday I had a mammogram, an ultrasound and a biopsy all in one day. By Wednesday I was diagnosed with invasive breast cancer. The next Monday I met with the surgeon. Then on Tuesday I had a MRI and met with the medical oncologist and then on Thursday I met with the radiology oncologist. Busy!
November 25th I had surgery. I had a lumpectomy to be followed by radiation(statistically same results as a mastectomy). A sentinel node biopsy had no additional cancer cells. However, up to 30% of those with negative nodes already have micro metastasis. My cancer biomarkers: estrogen positive, progesterone negative, Her-2/neu negative. Next is the oncotype breast test. It took a month for them to finally tell me my cancer samples were damaged and they were unable to perform the test.
Next stop radiation. I have had 11 treatments so far.
During this time I have been totally fatigued, discouraged and worried about what happens next. This last week I have decided to drop the worries, REST, REST, REST! It works. I journal in the morning, go to tai chi class, rest, travel to MD Anderson for my treatment, get zapped. go home and rest. I feel better and I am starting to have a little energy to do more. I am here, finally.
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Thyroid CA next step
Monday I visited my surgeon. She had my pathology report. I like to see her. She has so much positive energy. She is knowledgeable. She is very helpful.
My cancer was not encapsulated and was within a mm of the border. not sure about this.My cancer was also in my lymph glands. So I will have a radioactive treatment.
Next stop today was my endocrinologist. The radioactive treatment is complicated. Prep work is detailed and takes time. I will have to become extremely hypo active. I will be on a low iodine diet. There is an injection called Thyroglobulin that costs $2500 that would cut the prep work to a much smaller time. My insurance will pay $1600 of it. I certainly am not able to pay the rest. In addition there will be the cost of the full body scan, $300 under my plan. The drug company has an application for assistance. I filled it out and gave it to my Doc and she will give it to the person who will be getting authorizations.
After the surgery I had less RA pain and swelling. But it seems that was from the 100mg Hydrocortisone I was given in the OR.
My hands and my wrists are starting to swell again. My pointer finger hurts the most. Feet and ankles fine so far. Next stop is my RA doc.
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Thyroid CA surgery is done
On 10/16/13 Dr. Vasquez operated on me. I say she slit my throat but the appropriate procedure was a total thyroidectomy and central neck resection. I was lucky. I had one of the best surgeons in the southwest doing her magic in my neck. I felt safe.
I was supposed to arrive at the hospital at 5:30 a.m. with a clean neck and an empty stomach. The evening before I received a call from the hospital and was told my arrival time was pushed back to 7:30a.m. and my surgery to 9:30a.m. Good I thought, I can sleep in. Next morning I took my designated meds as instructed(BP meds, prednisone, Plaquinil) dressed in loose easy to get into clothes and I am ready to go.
As we were loading into cars for the trip down the street and around the corner, my phone beeps and another change in the plan. It is the hospital saying they are ready as soon as I could get there. We are there in 5 minutes. I register and copay. Up in the surgical area more papers are signed. Phone numbers secured.
My sons and I are brought in to the presurgical area where I am settled into the bed that would be mine until I left the hospital the next day. More questions, vital signs, IV started. People coming and going. My sons at my side like knights in shining armor. My loves. Had a very serious conversation with the head anesthesiologist. A flurry of activity to get me moving. The person who stands out is this wirey colorful man who was the nurse anesthetist who declared himself a wet back whose mother was pregnant for him as she came over the border. I liked him. He was tricky though.
My brain was looking forward to seeing the inside of the OR and all the stuff they use. Not to be. My last memory was leaving this room. In fact, I wasn’t even all the way out of the room. My favorite wetback had slipped me a mickey. Oh well. I went out in the preop room and woke up on the way to my post op room. There were my sons and a good old friend to greet me. I had made it.
I had a horrible headache. Something I never have. Throat was sore. I admit to being a bad patient. The pain meds don’t work. I cannot sleep. I am waiting patiently to get out of there into my own bed. The nurses were kind, the bed was, in fact,comfortable. Plenty of warm blankets, room was quiet. I was able to eat a poached egg. Pudding and cream of broccoli soup went down.
Home felt very good. Warm and cosy. I slept well. Surgery was Wednesday. Today is Saturday and I feel fine. I took the pain pills Thursday and Friday. Will take three for today. Maybe one or none tomorrow. A little rest and I am good to go.
My parathyroids are intact and unbruised. I now have another pill to take. Levothyroxin (aka Synthroid). It is another lifetimMye medication. I take it first thing in the morning. Wait at least 30 minutes before coffee as coffee can disrupt the absorption of the Levothyroxin. Then I’m good to go.
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An RA life is doable: First year.
This has been a roller coaster year for me. I was lucky in some ways with a sudden and severe onset. There was no question about my diagnosis.
I searched and searched the internet looking for clues to my future.
My RA is a bad case. I have no remission. All the little joints in my feet and in my hands have been swollen for 9 months.
Now I wake up daily to the surprise of what joints will be more swollen and demanding attention that morning. I like to start the day by getting all my little guys moving. My joints love me for it. I feel better sooner.
I make my coffee. Love freshly ground French roast beans. It is worth getting up just to have a cup. I feed Emma and Jimmy. Heat my heating pad in the micro. Take my first pill of the day after a blood sugar check. Settle into a warm back, hot coffee and my journal.
Multitasking in a happy way.
After the leisurely coffee ritual, a hot shower feels really good. Just don’t drop the big heart shaped soap on your worse toe. Not good. Still the shower is worth the risk.
Yoga, the big blue ball, a range of exercises learned at PT. Feeling good.
One of the important points about RA that has finally been pressed into my brain cells is the NEED to SLOW DOWN. I do get it. This is hard as I live life with gusto. That is how I approach everything. Full speed ahead.
I have a good morning. Go to work at 9:45 and leave at 6 but try for 5. This is great! It is a big change from my 9am to 8pm normal routine. I have decided what gets done within my new limits will have to be good enough. Gee, what an original thought. Life definitely is less stressful, less tiring. So far the world is not complaining.
My diet is getting very close to being too healthy. All that anti-inflammatory stuff. I do like the grapes and can always eat the salad.
More another time. It is time for the heating pad, milk, a silly book and a nice warm soft bed.
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Did the Dinosaurs have RA?
They did not. They were a healthy species. However, there were some who had holes in their bones similar to those humans who have Gout.
The earliest findings of RA in humans was actually in North America in an area know today as Tennessee. Bones found to belong to Native Americans who lived about 6500 years ago or in 4500 BC were authenticated to have RA. Today Native Americans have the highest incidence of RA in any ethnic group. Some argue that RA is a new disease but it seems they are ignoring all the evidence compiled by researchers. RA was also found to be present in Egyptian mummies.
We can feel fortunate that we have our RA in the present. Even in the 20th century it was a tough disease to have. Aspirin was consumed in large doses as was Prednisone in the latter part of the century. Prednisone was considered a miracle drug and was used in high doses. Today it is helpful tool in our war chest but in much lower doses.
Although the dinosaurs didn’t have RA, the Egyptian mummies did. Lucile Ball and James Colburn had RA too. Do you remember them?
marysarthritis.com 