What do a robin and I have in common? A red breast!! I am really suffering from sunburn or radiation burn or cooked microwaved breast!! I have inflammation and redness galore as well as irritation under the arm from skin rubbing on skin which Dr Marisa Weiss warned me about but I found hard to avoid as I was living life. I thought having a cotton tee shirt on was guarding against friction but I was wrong. You have to do nothing, keep your arm akimbo, lie around with your arm flapping in the wind so that it does not touch anything near your body. Get much done in life that way?? NO!!
The two medications I have for this condition which I was not so diligent about, I am now putting on 4 times a day instead of 3 so that the redness will clear up. I was told by the technicians that the redness continues for around a month after the treatments stop. It can even get worse. The effect is going on internally after the treatment stops for up to a month. Can you imaging how intense the rays are?? Freaky!! My poor molecules! They are still cooking.
The very fabulous news is that I was told at first I would be finished radiation on October 8 but, in fact, I will be finished on October 4. On Monday, I was told I was finished the 25 sessions of full breast treatment. The entire breast had been radiated each time to insure that all cancer cells were gone. Don’t forget, the purpose of radiation after a lumpectomy is to make the outcome equal to a mastectomy when they take the entire breast off. The next phase of radiation therapy is 8 sessions of radiation to the cancer site. An additional piece is added to the machine which focuses the rays to a smaller area. These rays are electrons. not protons, which do not penetrate but stay more shallow since they angle the machine more directly at my body. The radiation goes to where the cancer was in the breast.
I am now in the final countdown. I will finish radiation next Thursday. I can’t believe it is almost over. Someone said the day is long but the weeks are short. It is true. I am so used to this being part of my routine. Will I miss coming to Lankenau? There is some comfort in knowing the cancer (if there is any left) is being zapped.
This is Justin and Pam, who are one of the teams that usually work with me at Lankenau Hospital when I get my radiation. There are about 5 therapists who rotate in pairs to work with me setting me up to be in the exact position I need to be- 93.9. Justin and Pam have been working with me most lately!
This is the giant machine which I never really noticed until today when they had me wait in the room instead of in the hallway. The large round thing in front comes down like an arm over me when I lie on the table. It only takes a few minutes from each side. They spread out the sessions so that the healthy tissue does not get injured but I never realized where the machinery came from until today.
It made me wonder what else am I missing in life if I could be coming into a room for almost 5 weeks and miss this massive machine?? Duh!!! What am not seeing elsewhere that is right in front of me?? Is it as obvious as this was? Am I too busy thinking about something else and missing it?? I sure did miss this and look at it… it is a humdinger… a massive, imposing, important machine!
The last week or more has been a whirlwind. Someone said the day is long but the weeks are fast. Boy is that true. My fourth week is over!! I am more than half way finished.
When I started I had a lot of angst about coming into the Jewish holidays and how I was going to handle them. I do not drive and was worried about what I would do. Can I miss treatment? I had to wait for appointments with the surgeon I wanted. I had to wait to start radiation treatment since you have to be healed from surgery. My anxiety level kept rising and rising. Dr Marisa Weiss said I could not miss radiation even though I observe the holidays and do not drive or do business as usual. Too bad. This has to be the exception!! So I consulted with my rabbinic authority and found that I could come to treatment as needed by pre- arranging rides with non- Jewish drivers. Thanks to Christine Stoughton, Pat Mancini and Priscilla Bohlen who know that they cannot call me if there is a problem, someone just shows up at 8:30 AM on the designated days and drives me to the hospital and takes me home. I am so grateful to them for this help.
The treatment moves along but I am feeling “fuzzy brain,”” I call it, a combination of fatigue and a diminished sharpness. I would not be able to compete in a debate about anything. I couldn’t sell myself, or win a point, I am just not that into to it for one and 2, I might lose the train of thought if it is too complicated. Maybe not, but I wouldn’t bet on me. Earlier in the day, I am better. It does get me down and make me feel sad… blue, a little depressed even. I know it is temporary, but it doesn’t feel good for now.
I also have a serious sunburn where the sun never shines!! The radiation gives me a bright pinkish red sunburn. I use 2 prescription creams to alleviate the burn and Dr Weiss is adamant about keeping my arm up and away from skin on skin but the burn is there. It does not hurt but is is getting pinker. I still hate the idea of radiation, even though I know it is doing a medicinal job. I hate that the healthy cells are suffering because of the chance of cancerous cells which I hope they got taken out through surgery.
I have been reading so many articles lately about breast cancer: Some say there are too many mammograms, some say mammograms are good, some say mammograms for young women with the BRCA gene is not good. I say, you should keep reading the latest research and keep informed. Speak to your doctor and talk about your individual case. But for women over 40 or women with family history, statistically annual mammograms save lives! Schedule yours now if you are due to get one!!!
I am starting to feel the effects of the treatment more since it has a cumulative effect. There is more redness from the burning (like a sunburn) and more discomfort. Dr Marisa Weiss suggests keeping a sock under the wire of the bra and keeping my arm akimbo to avoid skin on skin. I now use both prescription creams (see last post) on a regular basis. So where are the perks?
Well, Pennsylvania Hospital has the Joan Karnell Cancer Center which is an Integrated Breast Center and treats the whole patient. The Wall Street Journal just had an article about treating the distress of cancer. PA Hospital is way ahead of the curve. They have supportive services such as: psychological services, massage, music and art therapy and nutrition services to name a few.
I have taken advantage of massage, nutrition advice and psychological services. Those of you who know me, know I love massage!! One day, I had the pleasure of a delightful free shiatsu massage with Wayne Mylin who is a fabulous masseur who does have a private practice in Media. That was followed by a free counseling session with Dr. Deborah Seagull. The nurse navigator Susan Kruse is there to help you get through the process and she has been very helpful to me in many ways.
Since I start each week day with radiation treatment at Lankenau Hospital which was such a good decision since it is 5 minutes from my house as opposed to 40 minutes (PA Hospital), I meet with wonderful technicians who provide treatment every day who help me assure that the cancer will not return and I will have an excellent outcome. When I take advantage of the other supportive care services offered by the PA Hospital, I meet other wonderful people who provide services that help in my treatment as well. I have noticed that people who go into the field of cancer care are exceptionally friendly and nice. I have not met one who is not so.
One of the perks of this crappy disease is all the great people I meet along the way. The other is free massage!
This week overwhelmed me and got me really down! I started radiation treatment which was difficult at first but doable. Thanks to the support of Brenda the first day and Choni the next three days, I managed to adjust to the fact that I would be going every weekday for the next 7 weeks. The routine is not so bad since Lankenau Hospital is near my house. In fact, I decided to drive myself instead of bothering volunteering friends to drive me. Although I appreciate the offer and would love the company, it is not really necessary since I am not feeling any of the side effects yet. If I do, I promised to let Choni know and she will get the “Driving Miss Linda” patrol in action!!
My husband Norm is dealing with prostrate cancer and is having proton therapy in October when I am finished my radiation. (I call us the Cancer Couple) He needed a procedure done at Hospital of the University of Pennsylvania on Monday in preparation for his therapy. On Wednesday morning at 3 AM he woke me up in excruciating pain, called his doctor and went to Lankenau Hospital’s emergency room. At 5 AM he came back with antibiotics and a diagnosis of a urinary tract infection but no fever. By noon he had 101! He called his doctors at HUP who told him to come down to their emergency room where he stayed all day until 6 PM when they told him they would admit him to the hospital for at least 2 days until Friday. A friend of ours drove me down to bring Norman some things and to take home his car.
By Thursday afternoon the culture from Lankenau revealed that the virus was E coli! Now infectious disease doctors were on the case because the antibiotics they were giving him were not doing the job. That evening they gave him a stronger one and they were culturing the virus to see exactly what they were dealing with. Now they say he will be in the hospital until Monday and go home with a PICC line (corrected thanks to Cousin Bruce) with a visiting nurse to give him intravenous antibiotics for two weeks. This is a serious virus he got from the hospital procedure!! He is really sick, especially when his fever spikes. It is very stressful to me. It is bad enough that you have cancer. Do you have to suffer from the procedures that are supposed to make you better??
The last and saddest event of the week is that our dear friend Barry Stieglitz, of blessed memory, died on Thursday after a long and courageous battle with cancer. Barry handled his disease with grace and intelligence. He was a role model for me- deal with what come and do it with grace. As a scientist, he did research and got into many trials and programs. My education was in the social sciences, so I go to Facebook and Twitter and blog. Other than organic chemistry, I would do very well to emulate a fine, caring person like Barry who will be missed by all who knew him.
Getting ready to spend Friday and Saturday at the Penn Tower at the Hospital of the University of Pennsylvania since I do not drive on the Sabbath. It is right across the street from the hospital. After a major meltdown, losing things, misplacing major things, running too late to get things done that I needed to do, etc, I think I am ready to go and relax and enjoy Sabbath with Norman.
I hope the hotel room is really nice because I could use a little luxury right now!!!
I find myself feeling the exact opposite emotions at the same time as well as thinking the exact opposite thoughts at the same time. The poem “Song of Myself” by Walt Whitman came to mind:
Do I contradict myself?
Very well then I contradict myself,
(I am large, I contain multitudes.)
On Monday I started radiation treatments at Lankenau Hospital. I had to go for a “fitting,” to be sure that each time the rays would go exactly where they had to go. So for about 35-40 minutes I had to stay in an uncomfortable position with my arms above my head, naked above the waist, while three super nice technicians (Justin, Liz and Corinne) positioned me for x-rays and tattoos, as well as other tests to get my position exactly correct. Then Dr Marisa Weiss came in to check things were exactly right and I got my first radiation treatment which hardly took any time at all.
While all this activity is going on around me, I am feeling and thinking all kinds of things:
Radiation is poison and I do not want it in my body/ I so happy I am here getting treatment that will keep the cancer away
I am scared/ I am brave
I cannot stand this/ I can handle this without a problem
A mastectomy would have been better/ I am glad I did not get a mastectomy
Like I said, I contradict myself.
Then on Tuesday, I go in for my second treatment. Radiation technicians Justin and Corinne are there with Regina and they have to take only one x-ray and the treatment. It is done in a comparative flash. I hardly have any time to think about anything, let alone contradict a thought.
I do not like the idea of radiation, but I do like the idea of a good outcome so I am in for the 35 treatments.
Everyone has been talking about Shades of Grey in a different context these days, but I have been worried about hearing the results of the oncotype test which lets you know whether the tumor is like to spread in the next 10 years or not based on 21 genes that are tested. A low score means highly unlikely to spread and a high score means highly likely to spread whereas an intermediate score is in the grey area and has to be looked at with certain ( size, age, for example) percentages.
Dr Sataloff, my surgeon, Dr Mintzer, my medial oncologist and Dr Weiss, my radiologist, all felt it was highly unlikely that I would need chemotherapy given the early detection and size of the tumor but no one would say for sure until the results of the testing confirmed it. As Dr Mintzer explained: in a barrel of 100 beautiful apples, you know 5 of them are rotten, but you cannot tell which are for sure. This test tells you which are the rotten apples. I just have to hope, I did not have the rotten apple!!
Dr Sataloff called to tell me that my score of 18 was high low, bordering on intermediate but still low and that, given my case, she did not feel that I need chemotherapy. She was calling the other doctors to share the information with them.
So, I am happy that my score is low, but concerned that it is high low and not very low. Glad that I do not need chemo, but worried, that maybe I do??? How would you ever know except in hindsight? Maybe living with cancer is living in the grey zone.
On the other hand, I was handed a Red Delicious and am grateful.
I read with great sadness about a 41 year old comedienne and actress Tig Notaro who waited over a year to follow up on a lump she felt and now has cancer in both breasts. It infuriates me that her regular doctor told her not to worry about it when she mentioned it a year ago when she was dealing with other serious medical issues. Now, of course, she is dealing with a much more serious problem than she would have a year ago.
PLEASE, follow your own instincts and get a mammogram when you feel anything in your breasts. Early detection is key in a positive outcome. The sooner something is detected, the smaller it is and the more likely it will be at an earlier state.
If you are due for a mammogram, make the appointment and get it done. Do not delay.
I met with Dr Marisa Weiss, Radiation Oncologist, at Lankenau Hospital on August 1, to discuss a treatment plan. I decided to meet with her because she has an excellent reputation, Dr Sataloff recommend her, and Lankenau is closer to my home. I had wanted all the doctors to be at Pennsylvania Hospital but Dr Satalofff said she works closely with Dr Weiss and it would not be a problem.
I liked her and appreciated the information she gave me about my particular case, my pathology report and how she would treat me which was slightly different from the was Pennsylvania Hospital said they would. Here it will be 35 treatments rather than 30, although she said that could change as we progressed.
I went back on August 2 for a scan which is like a fitting and some tattooing! I have to wait until August 20 to start radiation since I am not completely healed from the surgery yet. Once I start, I go every day 5 times a week until I am done. I have my schedule all complete in my agenda!
Dr Weiss is a powerhouse. Twenty years ago she started Living Beyond Breast Cancer, whose mission is to empower all women living with breast cancer to live as long as possible with the best quality of life. Twelve years ago she started www.breastcancer.org which is now the premiere website for breast cancer and gets 12 million hits a year!! The doctor has juice!!
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