Happy Birthday to Me.

Tomorrow is my birthday and I will start the day at Radiation. I plan on wearing my birthday candle hat and sunglasses to Radiation...... We all need a sense of humor you know. 

Traveling soon after chemotherapy does leave one vulnerable to questions and commnets...... it is the no hair situation that leaves people quite curious. Especially other "survivors".  Whispers came my way while in line for food, sitting quietly waiting for the kids or getting fresh towels, even while playing trivia in one of the lounges..... "are you in the middle of treatment?,  did you just have chemotherapy?, another one who does not like to wear her hat over her ears....." Always followed by "Me Too"- "I am a 7 year survivor......, look my hair grew back......., it is going to be okay".  Many others who have experienced Cancer spoke to me on the cruise- swapping stories of their experiences.  It was nice to chat with them - to feel seen and recognized for what I had been through and at the same time, I was always taken back- some how felt invaded by a stranger. Except one woman as she looked just like me. She and I were in the elevator together and she said "another one who does not like to wear her hat over her ears." She actually had left her head uncovered that evening. Our heads looked almost identical.   I could have talked more to her as she said Me Too to everything I said. 

I planned my cruise before I was diagnosed---- "Me Too"
I rushed my chemo to get it done in time so I could feel well enough for the cruise---- "Me Too"
I am doing radiation when I get back---- "Me Too"
and she added- I became the lady that was going on the Cruise and I said "Me Too".
Then the elevator opened and off she went.  Seeing her there made it almost felt normal to be doing this thing---- getting Cancer treatment and living life as if nothing was happening at all.

One remarkable conversation for me was with the daughter of one of our tour guides, Spencer Ambrose of St. Lucia.  She was only 18 when she was diagnosed with non-Hodgkin lymphoma.  Her experience was frightening for me to learn about.  She had to spend 6 months living at a hospice in Colombia to receive Chemotherapy and Radiation. Her mother was able to fly over and spend some time with her but for the most part, she was without family or friends during her treatment. Now she moved her bi-annual follow up visits to Belize.  And I have about 10 Cancer treatments Centers within an hour of my home and I chose to go to one that is less than 10 minutes from my house-- basically closer to my home than my work is.  To quote a famous girl from Kanas, "There is no place like home" especially when home is the United States of America.

And there was some people who asked about my illness and then told me a sad story about an unfortunate friend or relative that was not so lucky as I to be recovering from treatment and moving forward with their lives. I realized those people were still grieving and feeling helpless but I could have done without their sad stories...... maybe because I hear sad stories at work day in and day out. After all, this was my vacation. Which I will tell you all about in great detail soon but right now I need to go to sleep.   Sweet Dreams You All.

Preparing for Radiation

Well I got my 6 little blue marks to prepare for 35 radiation treatments. I was down graded from 37.  I will be going Monday thru Friday until May 13, 2016.  The entire breast will get radiation. The machines are enormous. There are 2 treatment rooms but I was in a simulation room in order to get the  placement of the marks. I know this part was supposed to be no big deal but it felt a little intimidating.  Fortunately I was able to secure an 8:15 am time slot for when I return from my cruise.   I took a questionnaire about how I have been feeling in the last week. My distress level I reported as a 4 on a scale of 1 to 10 - ten being the worst- I am sure going away is the reason I am not too distressed but I did report to feeling quite sad. I am so sad to learn that cancer for me, will likely be a chronic disease because of the lymph node involvement.  I just wanted to go through this and then be done- kind of like a divorce. But I guess not..... more like shared custody--- we will have to deal with each other for the rest of our lives. 
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You'll meet with your radiation therapy team, health care professionals who work together to plan and provide your radiation treatment. Team members usually include:

• A radiation oncologist, a doctor who specializes in treating cancer with radiation. He or she determines the appropriate therapy for you, follows your progress and adjusts your treatment, if necessary.
• A radiation physicist and a dosimetrist, who make calculations and measurements regarding your radiation dosage and its delivery.
• A radiation oncology nurse, who can answer questions about the treatments and side effects, and help you manage your health during treatment.
• A radiation therapist, who operates the radiation equipment and administers your treatments.

Before your first treatment session, you'll go through a simulation in which a radiation oncologist carefully maps your breast area to pinpoint the precise location of your treatment. During the simulation:

• A radiation therapist helps you into a position best suited to pinpoint the affected area and avoid damage to surrounding normal tissue. Sometimes pads or other devices are used to help you hold the position.
• Using a CT scanner, the radiation oncologist locates the treatment area. You'll hear noise from the CT equipment as it moves around you. Try to relax and remain as still as possible to help ensure consistent, accurate treatments.
• Ink marks or tiny permanent tattoo dots are placed on your skin to guide the radiation therapist in administering the radiation. Be sure not to wash ink marks off until you're told to do so. If the marks can't be seen, you may need to go through the mapping process again.
• The dosimetrist, radiation physicist and radiation oncologist use computer software to plan the dose of radiation you'll receive. Once the simulation and planning are complete, you can begin treatment. For each session, avoid wearing jewelry, latex bandages, powder, lotion or deodorant on or near your treatment area. These substances can interfere with delivery of the radiation.

Radiation therapy usually begins three to four weeks after lumpectomy surgery to remove a breast cancer. Radiation therapy is used to eliminate any remaining cancer cells in the breast or armpit area.There are two primary types of radiation used in treating breast cancer. They are:

• External Beam Radiation - a traditional approach to delivering radiation.Treatment usually takes several weeks with a Monday through Friday schedule. In certain instances, a shorter treatment regimen, called accelerated radiation, is used. It delivers a higher dose of radiation over three or four weeks. Daily treatment with external beam radiation consists of set up time and positioning activities followed by receiving radiation, which takes about 2-3 minutes. Treatment is painless.

Radiation therapy for breast cancer

Radiation therapy is treatment with high-energy rays or particles that destroy cancer cells. Radiation to the breast is often given after breast conserving surgery after to help lower the chance that the cancer will come back in the breast or nearby lymph nodes. Radiation may also be recommended after mastectomy in patients either with a cancer larger than 5 cm, or when cancer is found in the lymph nodes.

Radiation is also used to treat cancer that has spread to other areas, for example to the bones or brain.   Radiation therapy can be given externally (external beam radiation) or internally (brachytherapy).

External beam radiation

This is the most common type of radiation therapy for women with breast cancer. The radiation is focused from a machine outside the body on the area affected by the cancer.

The extent of radiation depends on whether mastectomy or breast-conserving surgery (BCS) was done and whether or not lymph nodes are involved.

If mastectomy was done and no lymph nodes had cancer, radiation is targeted at the chest wall and the places where any drains exited the body.

If BCS was done, most often the entire breast gets radiation, and an extra boost of radiation is given to the area in the breast where the cancer was removed to prevent it from coming back in that area. The boost is often given after the treatments to the whole breast have ended. It uses the same machine, but the beams are aimed at the place where the cancer was removed. Most women don’t notice different side effects from boost radiation than from whole breast radiation.

If cancer was found in the lymph nodes under the arm, radiation may be given to this area as well. In some cases, the area treated may also include supraclavicular lymph nodes (nodes above the collarbone) and internal mammary lymph nodes (nodes beneath the breast bone in the center of the chest).

When given after surgery, external radiation therapy is usually not started until the tissues have been able to heal, often a month or longer. If chemotherapy is to be given as well, radiation therapy is usually delayed until chemotherapy is complete.

Before your treatments start, the radiation team will take careful measurements to determine the correct angles for aiming the radiation beams and the proper dose of radiation. They will make some ink marks or small tattoos on your skin that they will use later as a guide to focus the radiation on the right area. You might want to ask your health care team if these marks will be permanent.

Lotions, powders, deodorants, and antiperspirants can interfere with external beam radiation therapy, so your health care team may tell you not to use them until treatments are complete.

External radiation therapy is much like getting an x-ray, but the radiation is more intense. The procedure itself is painless. Each treatment lasts only a few minutes, but the setup time—getting you into place for treatment—usually takes longer.

Breast radiation is most commonly given 5 days a week (Monday through Friday) for about 5 to 6 weeks.   Some older women who have breast conserving surgery for early stage breast cancer don’t need radiation. 

Possible side effects of external radiation: The main short-term side effects of external beam radiation therapy to the breast are swelling and heaviness in the breast, skin changes in the treated area, and fatigue. Skin changes can range from mild redness to blistering and peeling. Your health care team may advise you to avoid exposing the treated skin to the sun because it may make the skin changes worse. Most skin changes get better within a few months. Changes to the breast tissue usually go away in 6 to 12 months, but it can take up to 2 years.

In some women, the breast becomes smaller and firmer after radiation therapy. Having radiation may also affect your options for breast reconstruction later on. It can also raise the risk of problems if it is given after reconstruction, especially tissue flap procedures. Women who have had breast radiation may have problems breastfeeding later on. Radiation to the breast can also sometimes damage some of the nerves to the arm. This is called brachial plexopathyand can lead to numbness, pain, and weakness in the shoulder, arm and hand.

Radiation therapy of axillary lymph nodes also can cause lymphedema. 

In rare cases, radiation therapy may weaken the ribs, which could lead to a fracture. In the past, parts of the lungs and heart were more likely to get some radiation, which could lead to long-term damage of these organs in some women. But modern radiation therapy equipment allows doctors to better focus the radiation beams, so these problems are rare today.

A very rare complication of radiation to the breast is the development of another cancer called angiosarcoma.  These rare cancers can grow and spread quickly.

Tired of doctoring...... the treatment goes on.

I have been avoiding writing this for some rather odd reasons. Friday was a long day. Meeting with the radiation oncologist was a little bit more upsetting that I would have expected. Again I had to hear about all the possible side effects including my risk for lymphedema. I remember working  as a geriatric care manger and meeting someone with a very swollen arm from her cancer experience. She was always uncomfortable and wore a sleeve to help manage the swelling. The sleeve was hot and annoying to her in South Florida. There is no understanding as to whether or not "babying" the arm or using the arm in any kind of strenuous exercise or whether doing routine exercise and stretching can prevent this from happening,  In other words, there is no clear prevention.   It just happens to some people. They took measurements at 6 sections of my hands and arms and will do so from time to time to monitor how my lymph system is working.. I was told not to do any kind of lifting with my left arm though. I will be meeting with a Lymphedema therapist after my 37 treatments of radiation. My doctor is Dr. John Wilson, a Penn graduate. But he lives in Atlantic City because he likes to surf. He did greet me warmly and identified me as the "one going on a cruise". 


Dr Wilson looked at every single film I brought with me. He was designing the course and angle of radiation, being careful to avoid my heart. It is my left breast that has cancer. I could get some scaring or burning of the skin and will be using cream daily to help with that.  The entire process of treating the whole breast is quite involved as I had 2 cancer lymph nodes floating around in my breast tissue and surgery was not able to give me "clean" margins.  I go back this Friday to get 3 little tattoos to mark important areas for the radiation to intersect on my breast........not really what I wanted to do 2 days before leaving for the cruise. I will start radiation the day after I get back, Monday March 27, 2016. I will go daily at 8 am, Monday through Friday for almost 7 weeks. I shouldn't be in the building more than 20 minutes each time I go.

Later in the day, I went to see Dr. Gor. I learned that she will also be the doctor giving me my estrogen suppressing medication. Drawing my blood to test was very challenging. The third person finally got me from the hand after 2 others failed, each trying twice.  My blood count indicated that I am slowly recovering from all the chemotherapy but it is still in my system. I have some small mouth sores and diarrhea continues to happen on and off.  I go back at the end of April.

To be quite frank, I am tired of all this doctoring for this little tiny piece of cancer that was about an half inch big. My appointment for genetic testing is April 8, 2016. And of courser there still is the Lymphedema therapist to met with too. It seems never ending.  I am in no mood for any reoccurrence.  I do know, that if sometimes comes back genetic, I am NOT having a mastectomy after all this treatment. I will just do a wait and see as I know I will be closely monitored.   Dr. Gor was concerned that radiation could damage the skin for reconstruction - I tried to reassure her that if I ever need a mastectomy, I will not have reconstruction. She did not listen and told me I will feel differently when it happens to me. ... or at least I do not know how I will feel.  And I think I do as I am already done with this crap. I am no longer really sexually active. I just do not need to have breast replacements if they need to go. Besides, I like undershirts.... way more comfortable than bras. 

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Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.

There's no cure for lymphedema. But it can be managed with early diagnosis and diligent care of your affected limb,  Lymphedema is a potential side effect of breast cancer surgery and radiation therapy that can appear in some people during the months or even years after treatment ends.

Lymph is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. Edema is the buildup of excess fluid. So lymphedema occurs when too much lymph collects in any area of the body. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back.

Why does lymphedema happen? As part of their surgery, many people with breast cancer have at least two or three lymph nodes removed from under the arm (sentinel lymph node biopsy), and sometimes many more nodes (axillary lymph node dissection). If the cancer has spread, it has most likely moved into to those underarm lymph nodes first because they drain lymph from the breast. Many people also need radiation therapy to the chest area and/or underarm. Surgery and radiation can cut off or damage some of the nodes and vessels through which lymph moves. Over time, the flow of lymph can overwhelm the remaining pathways, resulting in a backup of fluid into the body’s tissues.

If you already have lymphedema but don’t remember hearing much about it during breast cancer treatment, you’re not alone, says Dr. Marisa Weiss, chief medical officer of Breastcancer.org. “I can say from experience that the time right after diagnosis, when you are considering options and planning treatment, is a blur. When you are feeling so anxious and overwhelmed, it is hard to listen, understand, and decide. So even if lymphedema gets mentioned during this time, you may not remember it. Or it may not come up because the focus is really on getting you well. So if lymphedema does develop later on, it can feel like yet another insult to the body, one that many women weren’t fully prepared for. The good news is that women can learn how to manage it and lead normal lives.”

Although there’s no way to know for sure whether you’ll develop lymphedema after breast cancer, you can help yourself by learning more about it. Know your risk factors, take steps to reduce your risk, and be aware of early symptoms. Left untreated, lymphedema can worsen and cause severe swelling and permanent changes to the tissues under the skin, such as thickening and scarring.

Adding to the frustration some people feel is the conflicting advice about how to prevent and manage lymphedema — perhaps you’ve encountered some of it! There’s still much more research to be done before we fully understand this condition. Also, many doctors don’t have a great deal of experience with lymphedema. Realize that you may need to take charge and find your way to an experienced lymphedema therapist.

Eighteen Steps to Prevention of Lymphedema

1. Absolutely do not ignore any slight increase of swelling in the arm, hand, fingers or chest wall (consult with your doctor immediately).

2. Never allow an injection or a blood drawing in the affected arm(s).

3. Have blood pressure checked in the unaffected arm.

4. Keep the edemic arm, or “at-risk” arm spotlessly clean. Use lotion (Eucerin, Nivea) after bathing. When drying it, be gentle, but thorough. Make sure it is dry in any creases and between the fingers.

5. Avoid vigorous, repetitive movements against resistance with the affected arm (scrubbing, pushing, pulling).

6. Avoid heavy lifting with the affected arm. Never carry heavy handbags or bags with over-the-shoulder straps.

7. Do not wear tight jewelry or elastic bands around affected fingers or arm(s).

8. Avoid extreme temperature changes when bathing, washing dishes, or sunbathing (no 1sauna or hot tub). Keep the arm protected from the sun.

9. Avoid any type of trauma (bruising, cuts, sunburn or other burns, sports injuries, insect bites, cat scratches).

10. Wear gloves while doing housework, gardening or any type of work that could result in even a minor injury.

11. When manicuring your nails, avoid cutting your cuticles (inform you manicurist).

12. Exercise is important, but consult with your therapist. Do not overtire an arm at risk; if it starts to ache, lie down and elevate it. Recommended exercises: walking, swimming, light aerobics, bike riding, and specially designed ballet or yoga. (Do not lift more than 12 lbs.)

13. When traveling by air, patients with lymphedema must wear a compression sleeve. Additional bandages may be required on a long flight.

14. Patients with large breasts should wear light breast prostheses (heavy prostheses may put too much pressure on the lymph nodes above collar bone). Soft pads may have to be worn under the bra strap. Wear a well-fitted bra that is not too tight and with no wire support.

15. Use an electric razor to remove hair from axilla. Maintain electric razor properly replacing heads as needed.

16. Patients who have lymphedema should wear a well-fitted compression sleeve during all waking hours. At least every four to six months see your therapist for follow-up. If the sleeve is too loose, most likely the arm circumference has reduced or the sleeve is worn.

17. Warning: If you notice a rash, blistering, redness, increase of temperature or fever, see your physician immediately. An inflammation or infection in the affected arm could be the beginning of lymphedema or a worsening of lymphedema.

18. Maintain your ideal body weight through a well-balanced, low sodium, high-fiber diet. Avoid smoking and alcoholic beverages. Lymphedema is a high protein edema, but eating too little protein will not reduce the protein element in the lymph fluid; rather this will weaken the connective tissue and worsen the condition. The diet should contain protein that is easily digested, such as chicken and fish.