10. Mastectomy Recovery / ER Visit / Back to work

Today is May 16th – 3-1/2 weeks since my left breast mastectomy on April 20, 2011. Recovery has been a pain so I haven't felt much like writing until now. Time to update all that has happened since mastectomy, before heading in for the DIEP Flap reconstruction this Friday, May 20th. 

The pain was so much more than I ever expected. The pain pills just didn't cut it! The label said take two every 4 hours, but after 2 hours I was checking the clock to see if I could have more. Tears were coming, it was really painful! Eventually called the hospital twice over the weekend to see what more can be done to suppress the pain. They told me to take Ibuprofen, which I did but without any relieft. Somehow I fought through the tears and dealt with the pain until my next appointment on Tuesday April 26th with Dr. Sahar.

Upon arriving at the doctor's office I was in a lot of pain; 6 or 7 on scale of 1-10, and that was with the pain pills and ibuprofen on board. During the appointment, the doctor removed one of my two drain tubes since it was not putting out much fluid and was safe to remove. As we talked about my pain level, he grew more concerned. I told him it felt like an elephant sitting on my chest. He was very concerned about my health, so much so that he sent me over to the Emergency Room. 

The doctor called ahead so they were expecting me. It was just a short few mile drives from the doctor's office to the ER. Mom dropped me at the door and by the time she parked the car and came into ER, I was already in a space and the EKG was completed and IV was going in. My pain level at the time I got to ER was like a 2 or 3 and never got as bad as it had been all weekend or that morning at the doctor's office. While in ER they also performed a CT scan, ran bloodwork, tried nitro paste on my chest, all in an effort to determine if I was having or had had a heart attack or pulmonary embolisms (blood clots) in the lungs. It is good news that they found nothing and determined I was in good health. Good and bad because I still did not know what was wrong. 

On the way home I called my former mother-in-law who has been an RN for decades and was explaining my symptoms to her and my pain issues. As we were talking, she helped me realize that from the time Dr. Sahar removed the one drain tube in his office that morning, my pain level never increased to that point all day. A drastic difference in the pain I had been feeling ever since I left the hospital (and the IV pain meds). Most likely, the tube was pressing on a nerve or something that was just causing lots of pain! 

Per the doctor's request, I followed up with my regular doctor the next day who agreed that I was in good health. I called the UCD nurse who confirmed the pain could very well have been caused by the drain placement. There was still one drain in place and the output was rapidly decreasing day by day. The drain was so uncomfortable; I could not wait to get the second one out! Follow up appointment wasn't scheduled until the following Tuesday, which was going to be a long wait to remove the second drain. Friday April 29th I was complaining to Kevin (my boyfriend) about the drain discomfort (actually I think I complained about it a lot more than just that day) and he convinced me to call the nurse to see what could be done. After leaving a couple of messages, I spoke with the nurse, told her my output levels and after some persistence on my part, she said that the doctor who was in clinic that day could remove the tube if I could get to their office. 

Kevin had gotten off work early and about 2:30pm we headed to Sacramento to get the second and last drain removed. When we got there, the nurse I usually see was there to assist the doctor with the routine drain removal. As he pulled out the tube, he noticed that the drain was clogged and my wound under my arm from where the drain had gone into my body started oozing blood and fluid. It was so gross! I don't like that sort of thing, but it was kinda funny the way it gushed out of me at the unsuspecting doctor. He was a bit surprised as he was not expecting that! Then I headed home with no more drains and hopeful that I would be able to get this recovery thing behind me. 

From that day on, my intake of pain pills worked its way from every 4 hours, 24 hours a day, to every 6 hours as needed. I was able to sleep without regard for setting the alarm to wake me up so I would not wake up in pain. Sleeping in bed is not comfortable, so i sleep on the couch, non-surgery side down with my back supported by the back of the couch. Every day that passed meant fewer pain pills to the point where I am not taking them anymore at all during the day. I still have some discomfort and laying down hurts a little, but I just take one before lying down to bed. The last two nights I have taken just a half of a pain pill before bed to help with the discomfort of lying down. I think the tissue expander is pressing on my chest and is creating the discomfort.

Monday, May 2^nd, 2011 mom and I went for follow up with resident at surgeon’s office who performed mastectomy to go over my lab results. The GOOD NEWS IS MY LYMPH NODES ARE NEGATIVE! This was what I suspected, but it was nice to get the official results. Later in the week, I stopped by the office where I had my mammogram and wrote a thank you note to the doctor who reviewed my mammogram and found the .7cm tumor in the first place. If not for her keen eye, this may not have been detected for years, and by then my outcome may not have been as good.

Work-wise, I have slowly returned to a few have-to-do jobs. 6 days after the mastectomy I got a ride to a client in order to get their payroll done. Worked for an hour and that was it for another ten days. Two days short of two weeks after the mastectomy I was able to drive one handed and worked 2-4 hours per day on things that just can’t wait. It has been nice to get out of the house. As of this Friday, I will be laid up again for quite some time.  

9. Surgery phase one a success

Wednesday April 20th, I had my left breast mastectomy. Mom and I got to UC Davis nice and early. Missed a gnarly rollover accident by about 15 seconds! Saw the dust fly we were so close! Very scary on the way to UCD.... My appointment at nuclear medicine in the radiology department to inject the blue die and radioactive tracer was at 9am, we arrived at 8am and got in sooner. In fact they were done injecting me by 9am. Uncle David came up here to sit with mom during surgery and my fabulous boyfriend, Kevin, was here as well after working half a day. 

With the radioactive tracer now in my system, they took me to admissions and then off to Pre-Op. Had so many people coming in and out of there, it seemed like a revolving door on the curtain. UCD is a teaching hospital and there were several interns and residents working along side of the surgeons and anesthesiologists. Even had an engineering student observing as she ponders a change in her major. It doesn't bother me that there were so many people around, new doctors have to learn somehow. I was assured that only the licensed professionals were the ones making the cuts.

Dr. Steven Chen did the sentinel node biopsy and also performed the procedure to remove the breast tissue while saving as much skin as possible to help with the reconstruction phase, which should start in May. Dr. David Sahar is the plastic surgeon who put a tissue expander inside my breast cavity and closed me up. The expander is to make room for the stomach fat to be transplanted to my breast. The additional skin needed to complete the reconstruction is also from my stomach. So it seems I not only get a "boob job" but I will receive a minor "tummy tuck" in the process. Though I always thought I would NEVER get a tatoo, it seems my areola will have to be tattooed on!  I know.....GROSS huh! Lets just say I won't be entering any nude beauty contests :-)

After sitting in recovery for a few hours, a bed was made available on the 8th floor. Mom was a little anxious because the plastic surgeon got called away on an emergency after I was done. No one came to the waiting room let her know I was out of surgery. She found out I was in recovery 3 hours after I was done in OR when she finally asked a nurse what my status was. 

As it turns out, the surgery went very well. The node biopsy was sent off to the lab for a quick test that showed no cancer in the lymph nodes. This allowed me to keep the rest of my nodes and virtually eliminated the chance for lymphedema, which is AWESOME!! They also put two drains inside of me that carry fluid out of my body. This is kinda gross. Kevin has taken lessons on how to clean out the drains.

Nurses have been giving me pain killers for the last two days. Managing the pain of an elephant sitting on your chest is not easy to do! First it was just Diloted in the IV, then they added pill form of Norco and now I am on the Percoset. Finally something that helps reduce the pain to a manageable level without use of the IV.

I am on the mend, but still having some pain. Looks like today, Friday Apr 22nd, is the day I will be released!  follow up appointments have been scheduled for Tues Apr 26th with Dr. Sahar to see about removing the drainage tubes and Mon May 2nd with Dr. Chen to review final pathology reports. Hope to get reconstruction scheduled for Mid-May. 

8. Sorting out the choices / Pre-op appointments

As I struggled with which type of reconstruction to do, there were lots of unanswered questions. I felt it was best that I meet with the plastic surgeon at UCD on April 5th before deciding whether to follow through with another second opinion at UCSF that I scheduled a month ago.

On April 6th I had a call with an intern at UCSF who was working with patients to write down their questions, goals and objectives for the consultation so the doctor could review them ahead of time and be sure to address them all. It is a great program.....they will keep track of the questions, help you figure out which questions to ask, attend your appointments with you and keep track of all the information for you as well as record it, and provide the questions and answers all typed up. My mom has been recording my appointments, but the process would have been helpful in the very beginning to sort out the questions I did not know I had.

As we walked through the questions, I realized it was necessary to cancel the appointment at UCSF. Many of the questions I had a month ago when the consultation was scheduled have either been answered or should be asked my treatment team. The UCD staff make me feel comfortable and the 45-60 minute drive is not so bad. So I am very comfortable having the procedure done at UC Davis. Certainly there another recently diagnosed woman with breast cancer who would get much more out of the doctor's time at UCSF.

Given that mastectomy surgery is schedule for the 20th, I scheduled pre-op appointments for April 12th with the plastics doctor to go over paperwork and any more questions I may come up with and April 14th to meet with the cancer surgeon to get all the blood work and stuff done.  

With so many question still rolling around about the DIEP Flap vs Implants decision that I felt pressed to have to make before my pre-op appointments, I called UCD to speak to the plastic surgeon on April 6th. After doing more internet research, which the doctor encouraged me to do after our first appointment, I was overwhelmed! Explained my fear of having to decide right now and that I have lots of additional questions, but I really need to get this tumor out. He put my mind at ease by reassuring me that I don't have to decide right now. He also had a patient call me who completed the DIEP procedure and she gave me a hard look at what to expect. Not sugar coated, but very matter of fact. We talked for over half an hour and she explained how she came to her decision. A lot of her choices and reasoning are similar to mine. She was a great resource and it made me feel better about proceeding with using my own tissue to reconstruct my breast.

Yesterday, April 12th, was pre-op with plastic surgeon. This was a great time to address my questions in more detail. With mom present, we went over my options and I am feeling much more comfortable about the DIEP flap procedure. It is more natural, my body is being used to heal my body. My breasts will still be made up of fat and tissue, implants have to be replaced every 10-15 years, there is the risk of leakage, breakage and other issues. The good news is that I still have a choice, all the way up until I decide to start the reconstruction, which makes me feel much better about not having to rush this decision.

Tomorrow is the appointment with the cancer surgeon. I sit here watching the Giants and Dodgers game writing this blog, realizing that this time next week I will be short one breast....Not so sure how I feel about that. Sure I realize how very lucky I am to have my life, but losing this part of me is something I haven't really had time to think about. I worry about the 2 weeks of down time when there is nothing to do but lay at home thinking....that is gonna be the hard part.....

7. Plastic Surgeon Visit

Went up to UC Davis plastic surgery clinic today (4/5/11) to meet with a surgeon to talk about mastectomy options. I was a little keyed up due to the minor car accident earlier in the day....well minor in that no one was hurt, but major because my car is wrecked...AGAIN and I won't have it for 2-3 weeks! Blood pressure was a little high, but that was due to the adrenaline in my body.

Mom and I managed to make it to the clinic on time. After spending over an hour with the doctor, it seems there are a couple of things to decide when it comes to having a mastectomy. Using implants or have an "autologous" procedure that uses my own tissue.

As it stands now I have 3 options, all of which include a sentinel node biopsy:
1) Lumpectomy with Radiation,
2) Mastectomy with no radiation and reconstruction with implants
3) Mastectomy with no radiation and reconstruction with autologous tissue.
If the biopsy shows cancer in the nodes, then radiation and chemo are on the table for discussion in all 3 scenarios.

Here are my thoughts on the various options:

1) Radiation is poison and I am not crazy about that idea. Don't want my tissues burnt to kill cancer cells, don't want my bones and heart and other organs to go through that if there are other options, which there are.  High levels of radiation are just not good for you. I want to avoid this if at all possible.

2) Implants have risks of leakage or rupture which can be problematic. Silicone implants are either not used anymore, or just not by this doctor. He talked about Saline implants, which sounded doable until I found out about this other option...

3) Using my own (autologous) tissue  to build a new breast? Really? I had heard of it but didn't know much about it until today. It is called a DIEP Free Flap procedure and would involve taking stomach tissues (skin, fat and blood vessels) and 'transplanting them' (my words) to make the new breast. There are other forms of 'Flap' procedures, but DIEP does not involve the stomach muscles, as some other 'Flap' procedures do. This DIEP procedure is MAJOR surgery! It is done with microsurgery that takes approximately 6 hours and can be done immediately following mastectomy or can be delayed until a later time for a variety of reasons. It involves being hospitalized for 5-6 days so they can monitor you in ICU for 4 days for observation. All of the tiny blood vessels have to be detached from the stomach and reattached at the breast. A very specialized procedure. Although they do not involve any of the abdominal muscles, it is still a major surgery that will make the stomach sore for up to a couple of months. Recovering to the point of working takes a good couple of weeks, but that may be for people who get to collect disability and don't have flexibility to return to work. I am self-employed and have to work to get paid, so I hope to be able to work from home within a week.

Decisions, Decisions!!

I know someone who did a 'Flap' procedure and has had nothing but complications from it. Though hers was not a DIEP Flap procedure, she discourages people from seeking autologous treatment, the kind that uses your own tissue. I plan to follow up with her to find out what exactly the problems were, because the first time we talked about it, I really didn't understand it. Now I have a better idea of what she went through. I am curious to know what she would have done differently given here experience. I am also seeking referrals from the plastic surgeon that I can contact about their experience.

Time is of the essence and I am at 7 weeks since diagnosis and getting the tumor out within 6 weeks is highly recommended. I don't want to rush to judgement, but I have to make a decision and move on with the best solution for me. There is no 'one size fits all'  answer for this kind of treatment.

As I pondered this decision today, I realized the importance of get something scheduled ASAP since time is marching on. At this point I am thinking of using tissue from my own body. The two surgeons, the one who does the mastectomy and the plastic surgeon who does reconstruction need to coordinate their schedules which has proven to be very difficult!

Late in the day I found out that doing immediate reconstruction, where you actually wake up with a new breast, is not an option until end of MAY! That is too long to wait - it would be over 3 months since diagnosis and I don't want to risk the tumor growing or spreading, so it looks like I will have to do the mastectomy first, have a tissue expander put in that will allow for reconstruction to be done at a later date, approximately 1-2 months after the mastectomy.

A very tough decision to make. Given that time is now working against me, I scheduled the mastectomy for Thursday, April 20th, 2011, knowing that I will have to go back again for the reconstruction. So far, given the information that I have found, I am thinking the DIEP procedure is my best bet. This way the tumor is out and if I choose to have implants done instead, I can still change my mind. But I really like the idea of using my own tissue, not a foreign substance. But then again I just don't know. Just when I think I have it all figured out........

5. Quest for a second second opinion

(Opps, meant to publish this a while ago)

After coming home from the conference and spending a couple of nights online, I decided it would be a VERY good idea to go to UC San Francisco and see what new procedures may be of interest to me. I submitted a request online for an appointment and received a call today telling me the next available appointment is nearly 5 weeks away on April 12th!! That is a long way out!

Explained to UCSF that I am interested in alternative methods, but if it was something I could have done in town, I likely would. Hopefully that will help so they don't have to try to work me into their surgical schedule. Unfortunately the cancer center is very busy, which is very sad. They are going to try to get me in sooner, either by way of a cancellation or a waiting list they have.

UC Davis had not returned my call as of today, 3/9/11, so I called them and got scheduled for March 24th, pending any cancellations, but I have to call every day to inquire about them.

So as it stands I have two second opinions, one at UC Davis on 3/24/11and UCSF on 4/12/11 if not sooner! I hope for sooner. Going to have to call and push back the Apr 1st scheduled surgical appt.

6. Second Opinion

Mom and I went up to UC Davis Cancer Center today. I was anxious to learn more about internal radiation. As it turns out, the internal method has not got enough data to know what the long term success rates are. It is not recommended for young people like me. Guess if I were 10 years closer to the grave they would consider it, but I'm not, so they won't. Guess that is a good thing.

Then my brain started to wonder what to do now.... I don't want to go through 6 weeks of radiation only to have the chances of recurrence at 20%. I want it closer to 0 % ! Explained to the surgeon my desire to avoid radiation. He said a mastectomy would most likely NOT require radiation, unless of course it is in my lymph nodes or too close to my chest wall.....neither of which is probable. But they won't know about the nodes until they do surgery.

According to the surgeon I can do either method - Lumpectomy with radiation or mastectomy with reconstruction and probably avoid radiation. So now I have to decide whether or not to remove my left breast and have reconstruction surgery. My next move is to reach out to friends and friends of friends who have been through this so I can ask them about their treatment and whether they regret doing or not doing  a mastectomy. Working on scheduling time with a Plastic Surgeon at UC Davis to discuss what is involved and what to expect.

This is a very tough decision. I am not looking forward to losing a boob, but losing my life would suck a lot more!! I will continue with my quest for information in hopes of finding the right decision for me.

So happy that my mom was there with me...sure makes it easier to get through - love you mom!!

4. CPIC Conference in San Francisco

Last Saturday, my mom, Jane, and I attended the Cancer Prevention Institute of California’s 10th annual breast cancer conference in Golden Gate National Recreation Area at the Presidio with views of the bay and Golden Gate Bridge.  It was an absolutely beautiful setting to learn about such an ugly disease. 

So as not to cause confusion let me explain about my moms. Jane is my adoptive mom who raised me from birth, but is ironically a breast cancer survivor of nearly 10 years. My birth mother, Elizabeth, has never been diagnosed with breast cancer, though her sister was when she was near 70. 

This conference came along at THE perfect time. I have so many questions about surgery, radiation, nutrition and a lot of things I don’t even know I don’t know! There were probably 200+ in attendance, mostly women, all there to learn about breast cancer, and BOY DID I !!

Hard to put it in a nutshell, but I will try….. One thing I learned, I already knew-time to make drastic changes in my diet. No more fast food burgers for me! Started eating much healthier and taking vitamins. No alcohol for long while until I have conquered this disease. 

Something else I learned is that this disease kills people and I have to take control of my own care if I want the best for me. Though the survival rates are getting much better, and my cancer is very small and not aggressive, I have the biggest fight thus far of my life ahead of me. The need to be diligent about my treatment was reinforced at this conference.

Genetics is an interesting topic as it relates to cancer. If you have a family history of breast cancer, they can check you for markers to determine if you will get the disease. I did not attend this break out session, but mom said it was very interesting. 

We learned about alternative options like internal radiation. There is a procedure where they can give you radiation at the same time they take out the lump and you never have to go back for radiation. There is also something called a mammaprint that will tell the probability that the cancer will recur, and since over 90% of 2nd breast cancers occur near the same location, this will help guide me in my treatment. Not sure if these are options for me, but I am sure going to find out! 

Overall it was a great conference that gave me lots to think about and work with. 

3. Scheduling around Giants Opening Day

Given that I don't sit and do nothing very well, and since time is of dire importance, I decided to be proactive in scheduling my treatment. Assuming that UCD agrees with Dr. Goldberg and surgery is necessary, I want to be treated in Stockton. Since Goldberg's office is scheduling surgery a month out, I decided I needed to cover my bases and get on the surgery schedule ASAP. I don't want to wait three weeks for UCD and then another month for surgery scheduling.
Had to keep in mind that the WORLD CHAMPION SF GIANTS have their home opener on April 8th and I am NOT going to let cancer make me miss this!! Cancer can kiss my butt! I am going to opening day, and opening night for that matter! Gonna spend the whole weekend in San Francisco with good friends :-) YAY!

Based on needing a pre-op appt two weeks before surgery and given the UCD timelines, I booked my surgery in Stockton on April 1st! I am no fool though, just wanna get it done! Radiation can not start until I am healed, that will be a couple of weeks, and until the biopsy results come in, they won't even know what course of treatment I will need.

I would say it is pretty good timing.

2. Quest for treatment and second opinion

There is so much information out there, it was important to stick to reliable sources. I looked at the American Cancer Sociey website cancer.org which has a lot of information about my specific cancer. Seems that the medically accepted procedure is to have a mastectomy or a lumpectomy followed by radiation and possibly chemotherapy. Some of the treatment process is not known until surgery is performed.

After checking with friends and family and my doctor, I decided to go see Dr. Steven Goldberg for a surgery consult in Stockton. Another friend suggested UC Davis Cancer Center (thanks Kathy) since they are on the cutting edge of cancer treatment and also do clinical trials to test new procedures that are not part of main-stream medical treatment YET. Decided to see Dr. Goldberg first and get a second opinion at UCD.

Mom met me at doctor's office on 2/22/11 to consult with Dr. Goldberg. She had the tape recorder and note pad so I was sure to get everything the doctor said. Hard to remember everything they tell you. He did confirm what I already suspected....he recommends a lumpectomy and a sentinel node biopsy with radiation. The node biopsy will tell them if the cancer has spread to other parts of my body. Radiation will take about 6 weeks. If the cancer has spread, then I would need chemotherapy. The lab work takes a week or so to come back, so I won't know right away if it has spread.

Spoke with Dr. Goldberg about getting a second opinion at UCD. He completely agreed that I should do whatever I need to do to be sure I have all the information I need to make a decision on treatment, but I should have it taken care of within 6 weeks of diagnosis. He suggested my regular doctor handle the referral, so I called them later that same day, the 22nd, to request my records be sent to UCD.

Called UC Davis to go over the new patient procedures. Once they receive all my records, they will have them reviewed. That takes about two weeks!! Then they will call me to schedule an appointment, which is another week out. Time being of the essence, I really want to be sure this process goes as quick as possible!
Called my doctor's office to follow up because I don't want to be waiting too long for UCD. They had already sent my records over the afternoon of the 23rd!

On my way back to my office, I stopped by the women's imaging center where I had the mammogram and biopsy done to request copies of my records at my mom's suggestion. To my surprise, they put all my info on a CD so I have copies that I can take with me to UCD. They don't need the images until I go for an appointment.

So now I sit and wait for UC Davis to call me.

1. History of diagnosis

I am writing this blog for my own reference as well as to update my family and friends on my progress without having to call you all individually. This way I can be sure I tell everyone the same information.

I went to my regular doctor for an unrelated issue and the doctor inquired about my last mammogram. When I told him I had never had one, he ordered one for me so they could establish a base line for future comparisions.

At the first mammogram appointment on 1/20/11, the technician told me to expect a call back for more pictures of the left breast. They said they just want to be sure they have good pictures for a baseline. That it was totally normal and not to worry if I get a call back. At the time, I believed that, now I honestly think they saw a suspicious area and wanted to follow up but didn't want to alarm me.

Went in for 2nd mammogram on 2/3/11 and they took more pictures of left breast. They also did a sonogram. The technician told me there is definately something there and don't be surprised when doctor calls to schedule me for a biopsy. The biopsy would allow them to take some tissue from the breast and test it to see if it is harmless or not. The doctor's office called and scheduled an appointment for me to come in and tell me I needed a biopsy.

The biopsy was done on 2/15/11. It was an ultrasound-guided core needle biopsy. They numbed the area, and took two samples. They inserted a needle of some sort... I wouldn't know cause I couldn't look at it - didn't want to get nauseous! Just couldn't watch !!

As I waited for the results, I talked with friends who said they would probably schedule an appointment to go over the results, positive or negative. I was fully prepared for a call from the doctor's office to schedule a time to review the results, especially since they had me come in to tell me I needed a biopsy. I was NOT prepared for the call I received on 2/17/11 at 1:30pm.

Nurse called me earlier and left a message to call the office. I figured they wanted to schedule an appointment to go over results, so I called back from my client's office in Tracey. Instead of scheduling an appointment, I hear these words, "The results are back and it is positive" !! Imagine the shock as I burst into tears hearing that news!! Don't really recall the rest of the conversation, but she said something about needing a surgeon and did I have one in mind! SURGEON! Seriously, how did it get to that point!

I hung up shocked, crying and feeling very helpless!! Took me an hour or so to get home and wrap my brain around the news. Called all of my moms to share the bad news. I called back to the doctor's office at 2:30pm and told them I needed to get in right away. Explained the way I was given the news and told them I had a million questions and no one to answer them. They got me in at 3pm. My mom, Jane, met me there so she could be my ears.

Doctor reviewed a recap of the results and this is when I first learned that I have an Invasive Ductal Carcinoma about .7-.8 cm at widest point. Talked about the need to remove the tumor and need to consult with a surgeon. Now the research begins!