I have been waiting for a recommendation from the folks at MD Anderson before I posted. Anne and I flew to Houston on Sunday, March 8. We got down there a little early so that we could visit with Anne’s sister, Marcia and her daughter, Lili. Marcia is getting chemotherapy right now for a small cell cancer in her ureter. A fairly rare tumor.

We met with the chair of Head and Neck Surgery, Dr. Myers, his PA, Jill Flynn and an oral surgeon, Dr. Cordoso. They were both very nice. After being examined by both of them, they did a CT of her neck and we were done. One thing that came up in the discussion is that Anne has been getting a shot to prevent osteoporosis called prolia. She was put on this by Dr. Vidal at West clinic. One of the side effects of this is osteonecrosis of the jaw. We questioned this at the time she was started on it but no one seemed to think it was a big deal. Dr. Myers tried to get us a consult with an endocrinologist to discuss this while we were down there but it did not happen. So we left Houston just two days after getting there and were told that we would here from MD Anderson when they had a recommendation. In the meantime, most of the pain in Anne’s jaw has abated.

Well, we finally heard back this past Friday, March 20. The CT scan confirmed that there is NO recurrence of cancer in her jaw and neck but it also confirmed that she does in fact have osteonecrosis of the mandible. Dr. Myers had spoken with the endocrinologist who recommended we stop the Prolia shots. Also, since Anne is experiencing minimal symptoms at this time they just want to see her again in 3 months to repeat the CT and do not feel that surgery is necessary at this time. So, hopefully the COVID19 scare will have died down somewhat so that we can go back in 3 months.

Greetings, All:

I haven’t posted in quite some time so here is an update. Anne recovered well from her double mastectomy with immediate reconstruction. Her final path showed a small amount of residual tumor in the breast tissue, which we expected but as previously posted her lymph nodes were negative.`

She was then started on a chemotherapy regimen that included Kadcyla an immunotherapy drug that targets her2 receptors and Anastrozole, a drug that prevents her from producing any estrogen.

She was also started on Prolia, a drug that helps prevent osteoporosis. One of the side effects is osteonecrosis of the jaw. Because of her previous jaw surgery and radiation, we asked her radiation oncologist and dentist if she was at increased risk for this complication and they said no. More on this later.

The immunotherapy drug which she has been getting every three weeks does not have the severe side effects of conventional chemotherapy but there are some flu like symptoms. We thought that she would be done with this treatment by the first of the year. However, we missed one cycle because of an episode of the shingles coupled with some bad nose bleeds Anne was having. Also, as it turned out the treatment was actually scheduled to continue through February. I know, shocking that we would have a communication problem with West clinic.

At any rate, her last immunotherapy treatment will be Monday, March 16. That will be quite a relief for both of us.

In the meantime, Anne had the surgery to complete her reconstruction last October. This entailed exchanging her tissue expanders for actual implants. This surgery hurt more and took more out of her than we had anticipated and she was unable to accompany me to the ASA annual meeting. However she is quite pleased with the final result.

THE GIFT THAT KEEPS ON GIVING

You may recall that before Anne was diagnosed with breast cancer, she had an oral cancer which required a partial jaw resection, neck dissection and radiation. This left her left jaw very weak. In May of 2018, the same week she had the mammogram which was read incorrectly, she had a spontaneous fracture of that jaw which required 6 weeks of having her mouth wired shut. There was concern at the time that any surgery, like screws and a plate, would not heal because of the previous radiation. It healed up nicely and she had been doing well until recently when her jaw began hurting again. You guessed it, she has a fracture in a different spot. This time it is thought that this is due to osteonecrosis and that without somehow increasing the blood supply to that area she won’t be able to heal. This, most likely, will require her to have some tissue and bone from another part of her body grafted onto her jaw. Since there is no one in Memphis with much experience in this, her ENT and Oral surgeon both agreed that she should go someplace that does. That is why I am blogging this from Houston, Texas where we are getting a consult from the folks at MD Anderson. Our first visit is later today and we are excited and scared to see how this next chapter in our life unfolds.

Though I know she is scared, Anne has continued to handle these set backs with much more grace and courage than I ever could.

Hopefully, I will blog in a more timely fashion going forward, in order to keep those interested informed.

Anne has been doing pretty well since her surgery. Her final path came back. There was a small amount of residual tumor in her breast tissue which we expected but the sentinel lymph node was indeed negative with no sign that there had ever been tumor in it. So allowing for the fact that cancer does tend to do what it wants to do, Anne should be cancer free now.

Unfortunately, the edges of her wounds on both sides were not healing well. Yesterday, her plastic surgeon, Dr. Campbell, took her back to surgery to cut out the dead tissue and made sure that there is viable tissue at those edges which there is. She also took a little volume out of her tissue expanders to ensure that the closure would not be too tight. This surgery took less than an hour and we were back home by 10:00 a.m. Since then, Anne has taken a walk outside and generally felt better than she has in quite some time. Her drain output is decreasing at a rapid rate and they should be ready to come out in a day or two.

Next, we have to see Dr. Vidal, her chemotherapist, on Friday and start her immunotherapy which will go on for the next 8 months. These drugs, not sure if she will get one or two, are called monoclonal antibodies and their generic names end in “mab”. They are designed to attack specific receptors on tumor or other cells. In Anne’s case they attack the HER2 receptor sites. She was getting this along with conventional chemotherapy prior to her surgery but now will only get the MABs. These are not supposed to have near the side effects by themselves that the other agents have and won’t take all day to give. She will receive these for about 8 more months.

Things are looking positive, and we are confident that the worst is behind us. Thanks again to everyone for their thoughts, prayers, concerns and words of encouragement. And thanks to Anne for being awesome.

We finally had surgery this past Tuesday, May 7. But before we did that we had to undergo a few more glitches in the medical system and or Anne’s health. Because some of the chemo is cardiotoxic Anne is supposed to get an echocardiogram every three months. As it was getting close to time, I kept reminding the folks at West clinic to get it scheduled and they kept telling me they would. Well after six weeks and multiple reminders, I decided to schedule it myself which I was able to do without difficulty. I was out of town last week so it was scheduled for this Monday, the day before surgery. Last week was her third post chemo week and usually she feels pretty good by then, so we decided it would only be a little selfish of me to go on my annual male bonding golf trip. During that week, some of her chemo symptoms were subsiding but she was getting more and more fatigued and easily winded.

When I got back, it was clear from just looking at her, that she was pretty anemic. However, we couldn’t rule out a cardiac problem. On Monday, her echo was normal, thank God, but her hematocrit was 18 with normal being 38 or so. So, I called her surgeon Dr. Pritchard, who is great, and she told me she would check to see if they wanted to do it at West clinic or germantown hospital. Well, we already knew that if West Clinic hurries they can get you blood in 3 or 4 days so we opted for germantown methodist. After we went to see Anne’s plastic surgeon, Dr. Carey Campbell, who is a delight, we went to Germantown Hospital to have a type and cross match done.

On the morning of surgery, we arrived at 7:00 a.m. so that there would be time to transfuse her prior to her surgery at 1:00 pm. This all went off without a problem. Prior to surgery my partner, Dr. Abdullah was kind enough to come in early on his late day and place pain catheters in Anne’s back to help with the postop pain control. Her surgery went off without any problems. She had bilateral mastectomies with immediate reconstruction. When her left breast was resected the surgeon could no longer even find the tumor and the lymph node biopsy was also negative. So all those months of chemo paid off. In spite her chemotherapist’s attempts at physical exam, I guess the tumor was shrinking. Anne is doing very well. Thanks to the pain catheters the pain is easily controlled with the occasional percocet. We have been home since Wednesday and she’s even starting to complain about what a slob I am, so she is obviously on the mend. Anne still easily tires, as her blood count is recovering slowly and her muscle mass had decreased quite a bit during all this but things are looking up. They are even almost finished repaired our house.

We still have many steps to complete on this journey, she has drains that need to be removed (when they stop draining) and the pain catheters come out tomorrow. She will need to get immunotherapy every three weeks for the next 8 months but things are looking up. We are so thankful for all the friends and relatives who have risen to the occasion to support us with prayers and the occasional meal. I am grateful for being in a profession that lets me have access to the best surgeons and anesthesiologists around and enough knowledge to navigate the system. I really don’t know how lay people can steer their way through the medical system without dying or getting well on their on. I am also grateful for being a member of a group that allows me to take off the time I need to take care of my lovely wife.

Well, we thought it would never come but Anne had her last chemo therapy yesterday. Of course we won’t feel like it’s truly over until she gets through the next two weeks. She has been feeling really good since her transfusion. Her sister from Utah, Livy, has been staying with us. She is a great nurse and cook and this has been great for Anne. She’s eating and drinking more. The down side is when Livy cooks, I eat more but we all have our crosses to bear. :-). Her blood count is still on the low side but holding steady. This is all working out well, since her nephew, whom she is very fond of is getting married this weekend. She had more energy than I did at the rehearsal dinner last night and hopefully this will continue until the wedding this evening. During her chemotherapy she had the added bonus of being visited by Livy and her family as well as her sister from Houston, Marcia, and her daughter Lily. This really lifts her spirits. Unfortunately, our timing was off and they weren’t there for the bell ringing. This was a great moment as you can see from the photos. Many of the nurses and Tracy, a patient support person who has been a friend for years were there applauding.

We have not had a repeat echo, yet. We are supposed to get one every three months, however the West clinic system is not quite a smooth running machine. After multiple attempts to get them to schedule it, I finally had to just order it myself so she could get it prior to surgery. Speaking of surgery. It is scheduled for May 7. She has finally decided to have a bilateral mastectomy with immediate reconstruction. Statistically, lopping off the normal side is not indicated but since this is her second primary it is quite necessary for peace of mind.

On a different note, we are staying in the Sonesta suites while our house is being repaired. It was going very fast at first but has slowed. The roof is repaired and sheet rock is in and painted but upstairs it was painted the wrong color so it will have to be redone. This won’t slow us down too much since it will be a week or more before they can repair the carpet. However, if they can get the light fixtures back in downstairs and then clean up the dust we will move back in. I’m sure there will be more to come. Thanks for reading this long winded blog until the end.

A week ago on 3/22/19 Anne had her fifth chemo. The best thing to say about it is only one more to go. She did fine getting her chemo but on the lab work her hematocrit was 20 which explains the weakness. Additionally the oncologist, who we rarely get to see and his fellow went through a lenghty exercise of mental masturbation about whether her tumor was smaller. That’s because the oncologist had only felt it once before and the fellow had never felt it. They finally concluded that it is much smaller which I could have told them but I guess they wanted to make Anne nervous with their banter first. Also, we all agreed that Anne needed a transfusion but in the bizarre system that West clinic has set up she had to come back 4 days later. But, as it turned out that wasn’t even for her transfusion, it was for a type and cross match and she did not get her transfusion until yesterday. She was getting weaker and weaker which I attributed to her progressive anemia. When we got to the clinic her BP was 88/50 but after about 20 minutes of getting blood her BP dropped to 63/40. Of course the nurse didn’t tell us this just that it was a little lower. You would think they would have suspected a reaction with a drop like that but they gave her a fluid bolus. For some reason, they started a separate IV to give the saline bolus but fortunately it was effective and her BP gradually improved up to 105/65. Anyway she is feeling much better but is still experiencing the bone pain, mouth ulcers and severe diarrhea which will probably go on a few more days. But only one more to go and then we can have surgery.

Meanwhile, we expect to start the repairs on our roof next week. We probably will not move out until they start work on the inside.

On Wednesday, March 13, while we were enjoying a visit from Anne’s sister Marcia and her daughter, Lily we were jolted by a loud noise that sounded like something had hit the roof of our house. That’s exactly what it was. A tree from a neighbor’s house came out by the roots and fell on our house. It made several holes in our roof. See the photo. Fortunately, no one was injured. About thirty minutes after the tree fell the rains came and we really began taking on water. There was quite a bit of damage to carpets, ceiling and walls not to mention the roof itself. The insurance company has been great and easy to deal with. Right now we are still in the home but when work begins we will probably move into a hotel. The last thing any of us need is to breathe in a lot of dust especially my little wife. For now we’ve set up camp in our master bedroom and things aren’t too bad. Anne has been really weak from chemo so she hasn’t been out of bed too much anyway.