Oncologist And Other Things

I had my check up with the oncologist. I had a physical exam as well as blood work. Everything is normal and that is great. I told him I am still very tired. He said I should try to do heavy exercise every day. I think that is a great idea but it has been hard to do. I am tired and I don't have that much time. I did rejoin my gym and I am hoping to get there more often.

I still have my port. I am hoping to get that out soon. It has been hard to schedule. I need someone to drive me due to the anesthesia and someone to watch Julianna. I am hoping to coordinate that soon. I had it all set up twice and they cancelled my procedure.

I also went to the breast surgeon. All was normal and I do not have to go back for a year now!! I was worried that the implant side might be leaking because the shape changed a little. Dr. Kostroff thinks it is just settling and doesn't feel anything suspicious. She said the only way to tell for sure is with an MRI, but she said it is very unlikely that there is any problem. Because I have only one implant I have nothing to compare it to. I must say I like the side with my own flesh much better. It is warm and much more natural. The implant side is cold and uncomfortable. I may do another flap in the future, I am still deciding about that.

Julianna had pneumonia and strep. It was a bit harrowing. She was fine when I sent her to daycare. They called me about 11 am to tell me she has a 101 fever. I zoomed over there to get her. When we got home I gave her motrin and I called the pediatrician to make an appointment. I got an appointment for 2:45. She was playing and seemed ok. I then heard a weird pleuritic rub sound coming from her. It sounded almost like she burped but it was coming from the side of her chest. It was only occasional. I called a few medical friends to ask them what they though about that. They asked if she was in any distress. No, she was not. She went in for a nap and then woke up about 2:15. Perfect timing for our appointment.

When I was putting her in the car I noticed that her hands looked mottled and her lips and nail beds were cyanotic (blue). I freaked a bit and was considering taking her right to the ER. I decided to go to her doctor since it was 5 minutes away. As soon as we walked in she vomited all over. I told them she needed to be seen right away since she was getting bluer. They brought her right back. The doctor said we needed an ER right away and had the nurse call 911. I called my friends at work to make sure they were sending someone great.

The doctor gave her a gram of a broad spectrum antibiotic. He said something big is going on here and it is moving fast. Her temp at the office was 102.7. She liked the ambulance (genetic?) and we had a great paramedic.

When we got to the ER her temp was 104.8. Her color was a bit better. They did a chest x-ray, blood, iv and rapid strep test. The strep test was positive. The chest x-ray was not read by the radiologist until the next day but was positive for pneumonia and reactive airway disease. About four hours later she made a great recovery and we were able to go home.

She had bacterial pneumonia which was actually good because it responded very quickly to the antibiotics. After all the years of being a paramedic I can truly agree that it is very different when it is your own child. We were really lucky that the pediatrician was so proactive and that everyone else was really good.

She is feeling great now. Today was her first day of soccer. She was the only girl there and she was awesome. Its fun to watch three year olds try to play soccer. They all sort of do their own thing. It is very amusing.

Other than all that, I have been working and enjoying life in general. I take care of my Dad every other Friday so my stepmother Betty can get a break. That is not too hard but it is sometimes emotionally tough. I take him to lunch and hang out with him. He continues to deteriorate. Alzheimer's is a rotten disease. Julianna loves to see Pop-Pop and Grandma. I know she knows that Pop-Pop doesn't interact just right, but she runs over to kiss him pretty frequently. We enjoy our visits.

I hope everyone is doing well. Thanks for all the help and positive energy! We love you all.

Julianna in the Er with her specail arm IV cover. This was when she was feeling better, just before we went home.

What's up?

So, I haven't posted here in awhile. What has been happening?

I still have my port. It was supposed to be removed but the surgery was cancelled due to bad weather. Paramedics show up in snow but apparently doctors don't. I am hoping to have it out sometime soon.

I have finished everything! I went back to Dr. Kostroff (breast surgeon) and I passed the exam with flying colors. I go back to the oncologist on 3/28. I will have blood tests and an exam. I will not need any scans unless the tumor markers rise, and that is not expected. It is possible, but statistically the chances are low.

As most people close to me know, my biggest emotional upset about the breast cancer was the fact that I would not be able to have another baby. It was a huge blow. I didn't want Julianna to be an only child. It upsets me for her, but also for her potential children who will never have an Aunt, Uncle or first cousin. My family and extended family have always been very important to me so it was so sad to think she wouldn't have that.

So, good news! I have retained the services of a surrogacy agency. I am going to have a baby but a surrogate will carry it. It will be a gestational surrogacy. That means, the egg will not be that of the surrogate. We will do invitro fertilization and the embryo will be placed in the uterus of the surrogate.

It is similar to an adoption, but different too. We will be able to do a pre-birth order so my name will go on the birth certificate immediately. Also, the agency sets it up so I will be able to room in the hospital with the baby.

I am waiting to match right now. I do have one potential match. There is a distance issue there but I may be able to overcome it. That surrogate lives in Tennessee. She sounds awesome and it may work out. She has been a surrogate before and that is great.

So, it will be great to change this blog from one of sickness to one of life! Keep your fingers crossed that it all works out!

Me and Julianna

                                                                          Julianna

Drains out!

I went to Dr. Kostroff today. She removed all six of my drains. It hurt a little. My friend Cathy went with me and she said she almost passed out. That would be a bummer especially since she is a paramedic. Dr. Kostroff cut the stitches that held the drain in, opened the drain ball so there is no suction present and just pulled it out. The first one was in my left armpit and that hurt the most. The four abdominal drains weren't bad at all. The right armpit also hurt, but not as bad as the left. The part that was inside my body seemed to be about six inches long on each drain. It was somewhat gross, really.

Now that the drains are gone I can get into some different positions and that helps. All my sutures are in. I am hoping they come out when I see Dr. Keller on Thursday.

Dr. Kostroff also gave me a copy of my final pathology report. It details the tumors and grades everything. My tumor is a grade 3. Bummer as that is the highest (worst ) grade. This means that it is a very aggressive cancer. They grade it using the Bloom-Richardson scale. On that scale my tumor characteristics got an 8 out of a possible 9. There were also three tumors. The main one was 1.7cm. The other two were 6mm and 4mm. The tumor cells of all the nodules show the same morphological characteristics and grade. There were also multiple foci of ductal carcinoma in situ (DCIS) in numerous other areas of the breast. DCIS is considered a stage zero cancer. It is cancer that remains in the breast duct and has not yet invaded other tissue. All the tumors had very wide margins. That essentially means they got it all.

This pathology report makes me so glad I made the decision to do a mastectomy instead of trying to treat it with a lumpectomy. I think knowing it was the right decision helps a lot.

So, the question I keep getting is "Why chemotherapy if they got it all?" The problem with breast cancer is that it can show up many years later in other parts of the body. There can be stray cancer cell that get into the blood or lymphatic system and then grow in other areas of the body. The goal of the chemotherapy is to kill any of these cells. I am not sure what my course of chemotherapy will be. I have an appointment with an oncologist, Dr. Citron, tomorrow. I will find out a lot more then.

Thanks to everyone for all your support. I love and appreciate you all. I am hoping this cancer will soon be a distant memory.

Misery and Hope

Everyone, I am sorry I had no chance to update you earlier today. I have been at the hospital all day long.
Mary Ellen had a vein blockage in the transplanted flap tissue on the left side. The surgeon was unable to save the flap.
The worst part is that Mary Ellen told the resident on duty overnight again and again that she thought it was encapsulated, engorged, and without vein function. She told him this very clearly and she was in great pain, The details of this is a long story, but basically she was discounted by a man who had less medical knowledge than Mary Ellen herself. When the surgical people arrived in the morning, she was rushed to the OR stat.
Writhing in pain, frightened and angry, Mary Ellen pushed a random button on her phone and got her friend Colleen. Colleen mobilized. She called Cathy, who ran red lights en route to the hospital in her pajamas, and was able to see Mary Ellen before surgery. I rushed to the hospital, but arrived after she was in surgery.
Several hours later, Dr. Keller came out to tell me they had lost the flap. I waited to see her in recovery, but I did not want to be the person to tell her the flap was lost. The recovery room nurse told me that she already knew, but she was in a lot of pain, and while I was there I just kept advocating for more medication, letting the nurse know that Mary Ellen is particularly tough with a strong constitution and a high pain tolerance, and that she did require more pain killers. They finally relented.
Colleen came in, and as a breast surgery recovery room nurse herself, she quickly discovered that Mary Ellen's drain was full and elevated above her incision. As politely as she could muster, Colleen asked the nurse to empty and lower the drain. The nurse did this, but then kicked Colleen out of recovery.
Colleen and I waited four hours in ME's room, being told she would be brought up "any minute." When she finally came up, we were deep in discussion with the nursing manager about what had gone wrong in the night. An investigation is underway, and Mary Ellen has requested a formal copy of that report.
I told the nurse manager to be absolutely sure that neither the night nurse nor the resident would set foot in Mary Ellen's room or she was sure to bludgeon them with her IV pole and strangle them with the tubes. She agreed to have both of them reassigned.
After quite a while, we finally got some big-picture good news: Dr. Kostroff, the first breast surgeon, who did the mastectomy phase, came in to the room, still in evening clothes, having recently heard of the setback. When ME asked her "how are you?" she said she was almost as devastated as Mary Ellen. She said that although she rarely gives preliminary pathology results, she had to bring ME the early good news:
The cancer might be only stage zero, and there may be no need for chemo. Now, before you all get your hopes too high, there will be more tests done to look for any other cancer that has emerged from the ducts, but so far they have not found any except very small bits of cancer, and the sentinal nodes are negative, so there may be an excellent overall prognosis!!!!
That news helped, but Mary Ellen is still devastated at losing her chance of cosmetic success to a resident's negligence.
Vanna and I helped ME get to the bathroom and then resettled comfortably, and Vanna was going to guard her quiet space so she might sleep, and I left the hospital finally.
I will see her first thing tomorrow. I'm sorry I can't update through the day, but I have no computer access until I get home.
Pray for Mary Ellen to see the big picture, be relieved from pain, and to refrain from justifiable homicide.
More tomorrow, Kathleen

Dr. Kostroff

I had my appointment with Dr. Kostroff. She was very nice and answered all my questions. Since she is the 4th breast surgeon I have seen I am getting pretty good at knowing what to ask. She can do the surgery on October 9th. She works with Dr. Keller all the time and it sounds like they have a pretty good system down. She looked at all my films and she said she will send my biopsy slides to LIJ.

She agrees with my decision to do a double mastectomy. She feels that the family history is so strong that it makes the risk high enough to justify it. She will do the sentinal biopsy on both sides. When I said I was concerned about my arms being hyper extended during the surgery she said that they are doing special things to reduce the risk of injury during the surgery. They will check for position of comfort and move my arms and legs during the surgery to reduce any injury from lack of movement or weird positioning. All good.

She said she can set me up with an oncologist who does strictly breast oncology and is on my insurance plan. That is great and I did not know there were even oncologists who worked with only breast cancer patients.

Now we get to the money. Always an issue. She doesn't take any insurance. I spoke to her financial person. She said my part of it would be $10, 500. I said I didn't think I could use Dr. Kostroff and would have to keep looking for someone on my plan. I am a little on the edge and PMSing on top of it so I just started crying. Dr. Kostfroff was nearby and said to come in her office.

When I went into Dr. Kostroff's office I explained the whole Julianna birth story to her. I said I had great insurance and was using an OB on my plan. Then, I got preeclampsia and HELLP syndrome. It led to kidney, liver and heart failure. I had severe cerebral edema and was going into DIC. They did an emergency c-section. The surgeon wasn't on my plan. The anesthesiologist, not on the plan. The sent in a hematologist, GI doctor, kidney specialist, neurologist, opthamologist, cardiologist, pulmonologist, family practice and on and on. As far as Julianna, the neonatologist, not on the plan and $1500 a shift, times 16 days. All in all, I am very happy we are both alive, but it was almost $60,000 by the time it was over, and that was just my 20%. Everything I had saved over 20 years was gone in 16 days. It is still not paid. So, here we are with catastrophic medical event number two in less than two years. I explained to her that I can't do it. She said she understood and agreed to take whatever the insurance paid her. I thought that was really nice and a HUGE relief to me.

Its funny, with the huge debate about healthcare these days I hear so many people saying how great their personal insurance plan is. I say get back to me on that after you have a catostrophic medical event. Just because you think everything is covered doesn't mean it is. The doctors who see you in the hospital bill separately from the hospital. I was covered for the hospital. If you need specialists, and you never know, you are probablly not covered for them all. Even with good insurance you are probablly responsible for 20% of the bill for those not on your plan. Let me tell you it will not take long to add up big. I do not really know anything about the current plan being proposed, but I can tell you that something really needs to change.

So I am happy about her working with me on the financial end. I really liked her and it sounds good. They said they would call me back tomorrow to confirm the date for 10/9.