Following surgery, I had an appointment with my oncologist who referred me to a radiation oncologist. Because we knew there were two lymph nodes involved and the possibility that there were an additional 3 nodes that had cancer, according to the pathology report, the decision was made to go ahead with radiation just to be on the safe side.

The radiation oncologist wanted the tissue expanders completely filled before starting radiation, which would occur 6 to 7 weeks after surgery. But, I had a problem with one of my incisions – it was taking forever to heal, so my plastic surgeon will hold off until after radiation to finish filling the expanders. It was only this week that the incision has completely closed – more than 2 and 1/2 months after surgery!

So, I just finished my second week of radiation and so far so good – 4 and 1/2 weeks more to go. I go 5 days a week and I’m only there for about 10 minutes. The only side effects from radiation will probably be some redness on the skin and some fatigue towards the end.

My hair started growing back in June- three months after chemo ended. It came in the same color and it is very soft. I lost all my nails over the past two months, but there had been some growth of new nails underneath. For me that was the grossest part so far. I didn’t mind being hairless, doing the drains, caring for my incisions, etc. But, when my nails started coming off I thought I was going to pass out. I lost a total of 35 pounds during all this, but put about 10 pounds back on and am feeling good. The last two side effects I am experiencing from chemo are sensitivity to light and my nose is constantly running.

I was hoping to have everything finished by the end of the year, but I found out from my plastic surgeon that I will have to wait 6 months after radiation to finish reconstruction. The skin and tissue have to be given time to heal.

This would have been much more difficult without the support of my family and friends. Thank you all so much!!

Last week, I had an appointment with my surgeon and she did an ultrasound and I am happy to report that she can no longer see the tumor.  We discussed my options: lumpectomy followed by radiation, mastectomy or double mastectomy.  With everything I’ve read about triple negative I’m opting for the double mastectomy.  She was concerned that I was still experiencing shortness of breath and a rapid heartbeat, so she wanted a nuclear stress test done prior to surgery.  Off to the cardiologist I went and had a nuclear stress test done this past Monday and the test results were fine.  Next step is my appointment with the plastic surgeon.

I was hoping to have my surgery at the beginning of May, but because I spent almost all of April in and out of the hospital it looks like surgery will take place at the end of May.

My temperatue got as high as 103 and my oncologist felt that my port had become infected.  So, yesterday morning I had surgery to take the port out and I now have a picc line.  They’ll culture the port to see if that was the problem.  I’m still running a temperature off and on, so I hope they find that the port was the problem.

All i want to do is be well enough to attend our daughter’s college graduation on May 1.

Well, this past Wednesday I couldn’t walk 5 feet without gasping for air.  My heart was racing at 149 and chills so bad that my teeth were chattering.  I called my husband and said I need to go to the hospital.   He quickly came home from work and loaded me into the car.  He later told me it was the first time that he looked at me and said I looked like a cancer patient.  He said I looked horrible.  We got to the ER and my body temperature was 97.1, heart rate over 100 and lower than normal blood pressure.

I was examined by the ER doctor, had another chest x-ray, EKG and blood work.  My hemoglobin came back at 8.8 and my WBC was 0.3 – virtually non-existent.  I started running a fever of 100.8.  My throat was killing me.  The decision was made to admit me.

It was like my body had completely broken down.  I had ulcers in my thorat, thrush in my mouth, neuropathy in my hands and feet and the scariest thing I found out from the Infectious Disease Doctor on Saturday was that I also had septicemia – a serious and life-threatening medical condition where bacteria gets in the blood.  I am being treated with all kinds of antibiotics to combat the infection and it appears to be working.  Blood work shows that the bacteria is no longer in my blood.  They are going to keep me in the hospital until my WBC counts go up.  Right now they’re at 1.8, but they did get as low as 0.2.

I’ve got to say, though, the room I’m in is wonderful.  It’s in the new wing of the hosptial and it’s large and I have a huge HDTV, which makes my stay a little more pleasant!

Then over the weekend, I started to experience extreme sensitivity to light.  In fact, I’m sitting here typing this with sunglasses on.  It feels like when you go to the eye doctor and they put that stuff in your eyes to dilate your pupils to check for cataracts.  So, this morning I checked to see if this is a possible side effect to chemo and sure enough it is.  It’s called photophobia.  I’ll call my oncologist office to confirm, but I’m pretty sure that’s what it is.

When she got to the ER she was talking to the doctor and then something happened – her heart stopped.   They did CPR for 12-13 minutes and it wasn’t working.  The doctor called her time of death and then in a matter of seconds her heart started beating.  The ER doctor said that this was the first time this had ever happened to him.  Even though her heart started, they had to put her on life support and she was basically in a coma and was put in the Cardiac Intensive Care Unit.  A CAT scan also revealed that as a result of all the CPR chest compressions she had suffered multiple strokes.  The cardiologist told us that my mom suffered a pulmonary embolism.  It was a catch-22 situation.  They couldn’t put her right back on Plavix after the brain surgery for fear of hemmoraghing, but that is exactly what she needed to prevent a blood clot from forming.

I believe she knew we were there for her, because when her eyes were open and we stood over her they would move and focus on us.  I think she defied the odds in the ER, so that we could all say goodbye to her.  She is with my father now and at peace.

My mother is in the same hosptial where I am having my chemo treatments and I happened to see one of my clinical reseach nureses yesterday when I was coming back from lunch and told her some of the symptoms I was having that started on Tuesday (rapid heart beat and shortness of breath) since starting Adriamycin and Cytoxan, in addition to Avastin,  last week.    I got a call a little while later from her telling me that my oncologist wanted me to go to the emergency room to have it checked out, because Adriamycin can cause heart problems.  Well, at least I didn’t have far to go!  All tests were negative for any heart attack, but the blood tests did show my white blood count is low at 1.9.  So, it dropped over 6 points in a week!  And, that’s even after having a shot of Neulesta last week.  The ER nurse told me he preferred that I not be in the hosptial.  I understand his concern!

Updated blood counts:

WBC – 4.1 – 11.2

• 2/17 – 8.3
• 2/3 – 8.7
• 1/27 – 11.6
• 1/20 – 8.6
• 1/13 – 8.1
• 1/6 – 9.1
• 12/30 – 9.7
• 12/21 – 6.0
• 12/16 – 7.1
• 12/09 – 6.1
• 12/02 – 8.0
• 11/25 – 9.8
• 11/19 – 6.7

NE # – 1.8 – 6.4

• 2/17 – 5.3
• 2/3 – 6.0
• 1/27 – 7.8
• 1/20 – 5.5
• 1/13 – 5.2
• 1/6 – 5.8
• 12/30 – 5.5
• 12/21 – 3.7
• 12/16 – 4.3
• 12/09 – 3.4
• 12/02 – 5.3
• 11/25 – 6.2
• 11/19 – 3.6

HGB – 11.7 – 15.5

• 2/17 – 11.9
• 2/3 – 11.5
• 1/27 -12.3
• 1/20 – 11.4
• 1/13 – 11.4
• 1/6 – 11.6
• 12/30 – 11.9
• 12/21 – 11.7
• 12/16 – 11.6
• 12/09 – 11.6
• 12/02 – 11.6
• 11/25 – 11.9
• 11/19 – 11.7

PLT – > 100

• 2/17 – 431
• 2/3 – 325
• 1/27 -379
• 1/20 – 443
• 1/13 – 370
• 1/6 – 320
• 12/30 – 433
• 12/21 – 387
• 12/16 – 439
• 12/09 – 367
• 12/02 – 382
• 11/25 – 331
• 11/19 – 309

My daughter and her friends, who go to UF, will be participating in the run.   So, if you know anyone that attends UF – spread the word!

CSCRB has added a link to my blog on their website!