First Chemo Treatment

We've been in the infusion area for about nearly 3 hrs and have 1 more (drug and hour) to go. Because it's the first time, the nurse first had to go over the side effects of all the drugs, and is running some of them at a slower rate than they normally would to be sure that I handle it OK. I'll need to come back tomorrow with Kemi for a dose of another nausea drug - shouldn't take more than a half hour I hear.

The infusion area is a large room with about 20 laz-y-boy type chairs around the edge. There are curtains to separate them into little rooms but they are all open. The other patients are mostly male today, mostly 50+, each just getting on with it. It's good cos there is wireless internet so Chinya and I are both on our laptops.

I've decided not to pursue the second opinion at Johns Hopkins. I am really pleased with the care that I am getting from the group I am with, and have come to trust that they are applying the state-of-art to my treatment. When I brought this up to Chinya, he said he felt the same way... the last time we'd spoken about it a few weeks ago, he felt that we should still go for it but we both feel that we are being led to just trust the team we have.

I thank God for His direction, and for a New Day!

Getting ready...

We had a busy day yesterday, with the presentation by a nurse at the oncologist's office in the morning, the meeting with a lady who sells wigs next, and finally the heart scan at the radiology office. Kemi went with me and on the way she read through the information on the drugs I'd be taking in case we'd have questions. I have four to take at home: (1) Dexamethasone, to decrease the body's natural defensive responses, such as swelling and allergic reactions (taken this 24 hrs before, day of, and day after chemo), (2) Emend, to prevent nausea (taken the 2 days after chemo), and (3) Compazine and (4) Ativan, which I should use only as needed if I feel nausea at other times. The chemotherapy presentation went over lots of information but most of it I may not have to refer to unless I have symptoms - then I can see if they suggest something that will help, or if I should call them immediately. We learned that I should avoid soy products cos my cancer is estrogen positive, and that I'll be especially susceptible to infection between days 7 and 14 after each infusion. I made up a list of things to have on hand, and I went with Bianca later in the evening to pick them up from Walgreens.

The visit to the wig shop was good, but the lady was late arriving so we had only about a half hour to go over what she had. Lots of options and turns out the better ones have an medi-strip that adhers to the head, and a scalp-like cap. We found a good one, but left without it - ust didn't feel ready I guess. The thing is I don't know if I will lose my hair... it's a bit of a dilemma cos if I wait and see, I won't be ready if it does happen, and that could be difficult. I will have scarves on hand but since I will still be working, as I am able, I have decided that I want to use with a wig some of the time. So the plan is to go back on Tuesday if I am up for it, and try a few more wigs, and get one then. The other option is for Kemi to go there on Tuesday and just pick up the one that we chose yesterday. Was surprised to learn that they give our prescriptions for wigs...

Late yesterday was the MUGA (heart) scan. It's done before and periodically during chemo treatment to check that the Adriamycin doesn't hurt the heart muscle. I had to be injected with a radioactive fluid for it, and just before the technician did that, it occurred to me that I was having surgery the next day and wanted the surgeon to be aware of it. So we had to wait about 20 minutes for his nurse to make calls and get back to me to say that it would be OK.

Today I went in to have the mediport inserted and that went fine, just took most of the day. It's a bit sore but after a while you get accustomed to recovering from surgery. This time, I remembered to wash my hair the day before. I actually decided to cut some off (about 3 or 4 inches). I saved some in a bag cos I hear that your hair sometimes comes back with different texture and colour - will be fun to compare it later IF that's where this whole process takes me...

I'm planning to rest for this evening and all that's bothering me is that I feel like a cold is coming on (slight sore throat) and I don't know what to do about that. Normally I would take garlic tabs or some zinc, but not sure what to do. I'll drink lots of fluids and trust God that it won't get any worse.

I've been enjoying my devotion using Mary Heart in Martha World (I think I mentioned it in a previous post). I find that more important than focusing on present needs in prayer is simply spending time growing closer to God. Between Sat and Mon, I got an incredible amount of work done at the office in much less time than I imagined I could - I had ideas on how to do tasks I've done before so much quicker - and each day I resisted the temptation to skip devotion and just dive into my work, and instead took the time to put Him first. I find that I use my work at times as a way to feel I have control over an aspect of my life - and letting go and trusting that it will be taken care of even when I also take care of other priorities is something I need to work on. I took the kids with me when I worked at times they were home (took each separately) since I think that they need me around even more these days, and that was something I will continue to do if I need to work on weekends or evenings.

I thank God for another day!!

After thoughts...

A few things from yesterday I forgot to mention...

It was funny, but a bit embarrassing, yesterday that I was setting off alarms at security posts at the Pentagon cos of the contrasts (barium sulfate for CT scan and a radioactive one for the bone scan) I had drunk on Thursday! At the first location, they asked if any of us had had a stress test, and we all casually said no... then it occured to me why they had asked ;-) All turned out OK and they let me in, since Kumbo was with us...

Last night Bianca was telling Chinya what she had learned from the support group, and mentioned that I might lose my hair. We told her the doctor said I will... That really upset her. I guess till then it hadn't really hit her that this was real since I look so normal. She asked 'Why my mom?'. We talked about how this was simply what I had to go through so I could be with her for many more years, and that I was not scared nor did I feel bad about it. I had this chance to do something so I could get better and I was ready. Keenan had already asked me earlier in the week if I'd have to take the medicine that would make me bald, and though he was upset initially, he was OK about it. I think it helped when he came over to to explain to Bianca why it happens (the hair loss).

It's bright and sunny today - I thank God for a new day!

Scans Clear!

We could hardly contain ourselves when we heard from that the bone and CT scans were clear!! Praise God! Now the prospect of just doing 4.5 months of chemo & 6 weeks of radiation seems like nothing compared to what it could have been if the cancer had spread to organs, etc. With some perspective, you come to see your situation as a lot more bearable :-)

After meeting with the oncologist, Chinya and I had lunch at a kabob place nearby as we waited to meet with the breast care navigator at the Life With Cancer House that was near the hospital. It's a large and new house that provides resources (books), counseling, classes, etc, for patients and their families. It's close to Fairfax Hospital, but they have some of their support group meetings at Loudoun Hospital as well. Actually, I took Keenan, Bianca and Tarin to the "Curious About Cancer?" support group for 5-12 year olds yesterday at Loudoun. When we got there, we had to wait in the waiting room for about 10 mins, and the girls played with Fancy, a therapy dog who was there with his owner. She comes with him every Thursday to be there for people who come. It's a great idea I think, cos it got the children's minds off of why they were there. The session lasted about an hour and they all came out pleased with the pictures they had drawn (about what changes they had noticed since I got sick) and their answers to questions. It's a 6-week program, and I think they would like to try it again next week. It will be the day I start chemo, so hopefully Kemi or Chinya can take them.

Back to meeting Candace (the breast care navigator) today... She went over questions I had about the mediport, chemo side effects, nutrition, etc. About the mediport, it's a little disc that's inserted below the skin on the upper left side of my chest, into a large vein. (I will have it put in next Wednesday - out-patient surgery under general anesthetic.) She explained how it works - a needle is inserted into it, allowing both infusion of the chemo, and blood withdrawal. She said that is really beneficial cos repeated inserted the chemo through a vein in the arm can lead to nerve damage (if the chemo leaks out of the vein) or damage to the veins. Regarding the side effects, she recommended I take some classes on selecting a wig, and looking nice. (It turned out that after we finished our talk the lady that gives the class on wigs was in the building so I will meet her on Monday at her shop. Seems they like to see you with your hair still on (sounds strange) so they can match your look/hair type with the wig.) One of the points that Candace stressed was that I had to bring chemo into my life and not live as if there is not life beyond it. I shouldn't spend days in bed even if I am tired. I should listen to my body, but I should take walks, spend time with family, visit friends and talk about more than just the treatment. She told me how important it is to drink 8 glasses of water a day to flush the chemicals through my kidneys.

I also have notes from Sheila about chemo and lots to read from the oncologist's office. The nurse told me that a good site would be www.chemocare.org, so I will visit it over the next week as well.

Kumbo took us on a tour of the Pentagon today - he said he he wanted me not to go in to the office and to take a break. It was a good timing cos after all the excitement of getting the news of the scans, I was in no mood to have to go back to my desk and prepare an invoice! It's been challenging though, with all these appointments, and next week will be even tougher cos I will be out nearly all of Tues-Friday, and have reports due. I am torn between wanting to go in to work this weekend, and wanting to spend my last weekend before the treatment just chilling out. It'll just have to be a bit of both...

I thank God for this new day!!

Treatment

I had my appointment with Dr. Favret yesterday and to summarize, I will need to go through 6 treatments of chemo, possibly starting next week.

I am more reluctant lately to write this blog. I guess I feel that there is no need to have others go through the ups and downs of the process as well. What’s the benefit of stressing others out? I continue only remembering that perhaps this is helping someone, and that each person has a choice whether to read or not. If you’d rather not, I don’t take it as a reflection of your support of me through this. It’s a higher level of thinking that we all need to have - to stay positive and not dwell on the present – to carry us through, and allow us to grow through this, and if the details take away from that, it’s better to skip it.

My Recurrence Score from the Oncotype Test was high (46), meaning that without chemo (using only Tamoxifen, the anti-estrogen therapy), the chance of recurrence would be about 30 percent. With chemo, it drops to 20 percent, and this makes the use of chemo the recommended next step. I’ll need to take a combination of Taxotere, Adriamycin and Cytoxan (TAC) for about 18 weeks. I will go 6 times for the intravenous treatment, at 3-week intervals. There is one more round of testing before I start – a bone scan and a CAT scan that I will be doing this week. I am trusting God that those will be clear. (Trust in the Lord with all your heart, and lean not on your own understanding. Prov. 3:5) This is a difficult journey when you have to do it alone, or without faith… There’s no peace from any other source that is genuine – the way I feel today, compared to yesterday, is remarkable. I can laugh again, and joke about my condition, without crying… and I owe it to my time of worship this morning, and remembering all that He has brought me through before.

My appointment yesterday ended with us sitting with a nurse to get a list of things to do: (1) attend a nurse-led seminar to go over the treatment, (2) undergo a procedure with the surgeon to get a mediport put in under my skin to ease the IV access, (3) fill prescriptions for nausea prevention, immunity boosting, etc, (4) follow up appt with Dr. Favret. I’m waiting to find out when the next round of testing/procedures will be done but I expect it will all be within the next week.

I’ve been in touch with a Breast Care Navigator at the Cancer Center at Fairfax Hospital and will be meeting with her on Friday to discuss nutrition, support groups, etc.

By the way, the way the issue with the “probably benign” lump in my left breast ended was that I got enough information to assume that it is benign, and there is no point in chasing after removing it cos that would only delay the real treatment that I need to get started with.

Love to all! And I thank God for a New Day!

Test Results - Biopsy and Her2

The test results for the biopsy and Her2 are in, and the bottom line is that the lump that was biopsied is benign, and the Her2 results are negative! This is great news - praise the Lord!

For those interested in the more technical aspects of the pathology report on the biopsied lump, this is where things stand... The report was actually quite complicated and it's not completely resolved how to proceed. It appears there are signs of (1) fibrocystic changes; (2) beginning signs of fibroadenoma; and (3) Pseudo-angiomatous stromal hyperplasia (PASH). There is general controversy over how to handle PASH, which is supposed to be a rare finding. I spoke to both Dr. Chen (who performed the MRI-guided biopsy) and Dr. Pierce (radiation oncologist) earlier today. Dr. Chen initially recommended surgical removal, but Dr. Pierce felt it may not be necessary, and they talked it over for a while. Later in the afternoon, I got a call from Dr. Chen and she said that she would leave the decision regarding whether to remove it or not to me and Dr. Moynihan, and the fact that it appeared in the MRI as a 'probably benign' lump suggests that it is not a concern, and can be monitored instead. (I meet with Dr. Moynihan on Thursday.) I've been in touch with Dr. Robert via email and he said he'll look over the results tomorrow and give his opinion as well. Seems every answer leads to new questions, but I am pleased the results are generally pretty good, considering... On the cancer treatment front, we are now just waiting for the Oncotype DX test results that should come in next week.

I'm much more focused now on eating right, and even have a chart Kemi created for me posted on the fridge where I mark off when I eat the main items - tomato-based sauce, sardines, wild blueberries, soy milk, dark chocolate, tangerines, peppery curry, brocolli/cauliflower, cranberries, green tea. Some I will try to have daily (tea, blueberries, milk, tangerines, chocolate) and others a few times a week. The dilemma with the green tea is that the kind that is good for you, like japanese sencha, is sold caffeinated. I had a cup yesterday evening and spent hours up in the middle of the night. One suggestion I found on a site at about 4am was to seep the tea for about 30 secs, pour out the tea, and then re-seep for the cup that you actually drink. It's supposed to be a more natural way to get most of the caffeine out. We'll see if it worked - I tried it today.

On the emotional side, I've been getting lots of support from family and friends who visit and call, and it means so much to me. Miranda brought several books over the weekend, and I am also working through some that Beckie had picked out when she came last month. And there's the music player on my new phone... I have lots to keep me occupied! But really, I can't imagine how I'd manage without my faith. Knowing that God will give me the strength makes me able to face all the uncertainty much better than I imagined I could have. I just pray that those I share with also share the faith, so they don't allow themselves to get discouraged or worried as this drags on.

I thank God for another day!

Biopsy

Today I had a MRI-guided biopsy of the 'probably benign' lump in my left breast. (This website talks about the procedure - http://www.mayoclinic.org/breast-cancer/mribreastbiopsy.html) On Tuesday, it dawned on me that I shouldn't wait to hear from Dr. Robert or Dr. Moynihan but I should call the surgeon's office to ask if I could have the lump biopsied. The nurse spoke to Dr. Moynihan and later that day, Jayne, the Breast Cancer Navigator in their office, called back to say that I should schedule to have the biopsy done at the same place where I had gone for the MRI. I called and scheduled, and was told I didn't have to do anything to prep except not take any ibuprofen, aspirin or herbal supplements.

It's always hard to know what the traffic's going to be like getting to the area where the Fairfax Hospital is, around Gallows Rd and Rt 50, from Ashburn cos of all the construction for the Dulles and Hot Lanes projects, so I gave myself over an hour, but got there in about 40 minutes, over a half hour early. After I was checked in, I had to wait about an hour and a half cos they were running late, and the biopsy ahead of me was 'the longest one ever' as the nurse came to tell me. The doctor who was going to do the biopsy came (Dr. Chen) to explain the procedure and ask if I had questions. It was going to be a needle biopsy, and I'd have the results back by about Tuesday. I asked how she'd know if she'd sampled the right location - she said that if the results said that it was just benign breast tissue, she'd know it was not a good sample cos it had to either be a benign fibroadenoma, or similar abnormality, or a malignant mass, since they already knew that it was not just normal fatty tissue. If that did happen though, I'd go back to the surgeon for a possible surgical biopsy - either way, I am trusting that all will be well, and that the results will show it to be a benign fibro... and nothing more.

The procedure went fine and Dr. Chen got two samples from a location in the center of the breast. I had to be in and out of the MRI bore several times as they took pictures before, during and after the biopsy. After that they put in a little titanium chip (about the size of a grain of rice) inside the breast at the location where they extracted the samples from so they'd have a reference point for it. I was surprised how concerned they were about the bleeding since it was such a small hole - the nurse applied pressure for over 10 minutes before I was allowed to get up. After that they sent me up for a mammogram to check that the chip was in the right place; then I got to leave with an ice pack strapped on tightly to me with a velcro strip. Had to keep it iced till bedtime, not shower, and not have any ibuprofen for a while.

It's always kinda strange that the technicians/doctors/nurses carry on their casual conversations when something that feels so critical to you is going on. My main focus as I lay there on the MRI table was to make sure I didn't move, but I could hear them chatting about various things... such as how two of Dr. Chen's feet put together were about the same size as one of the technician's (she wears size 3 -'where do you find shoes??', etc, etc). Last week when I was there, the same technician told me that a patient had told her that she should take a vinegar and honey mixture to help her with her very hoarse voice, and that she planned to try it. I remembered that last night when Chinya came home with a sore throat and decided to give it to him (I checked on the internet and found the same remedy, with the proportions...). It seemed to help so I told her about it today and she laughed cos she hadn't had the guts to do it - the thought of drinking vinegar... but they laughed about how husbands will try anything!

I ended up taking Tylenol for the pain today but overall it's been OK, except for the fact that they wanted me to wear a tight sports bra all day to hold the ice pack in place, which was uncomfortable. After getting ready for bed and changing out of it, Bianca asked how I was feeling and I told her I was perfect. She said, Mom you're lying. No-one is perfect. I told her I felt better cos I'd changed out of the tight bra that the doctor had told me to wear. She looked at me and said, Was it a man? :-)

No word yet about the Her2 results. Dr. Robert called me on Wednesday to ask if Dr. Moynihan had responded about the biopsy, and to say that another oncologist in his office would follow up with me while he was out of town. I got a call from the Genomic Health (http://www.genomichealth.com/OncotypeDX/Index.aspx#) about the cost of the oncotype dx test and insurance coverage. It sounds like they are ready to help with working with the insurance company to lower the costs we will have to pay.

I thank God for the peace I feel lately. I'm actually not worried but know that He will take me through what's ahead.

Thank God for another day!

Waiting

It’s been a long weekend, both cos of the New Year’s holiday, and because we are just waiting… I’m feeling quite subdued – there’s a lot on my mind and though so much is going on around me, my mind keeps drifting back to this. I wake up thinking about it, and it’s the last thing on my mind at night. It’s good to keep busy though, and I enjoyed dressing up and going out with Chinya to New Year’s Eve parties, hanging out with the family on New Year’s Day, going to the bookstore with Bianca, and doing all the normal everyday things. The pain around my arm pit is completely gone and I worked out at the gym on Thursday - felt great. Looking forward to setting up a routine where I do it nearly every day. We are still juicing and trying new healthy foods (beets taste a lot like carrots, I think), so overall I can’t complain at all.

I got answers to my questions from Dr. Robert by email: Tamoxifen is not as effective in cases where a patient is ER+ but PR-, and our treatment options will not be restricted by the insurance company as we do these tests to help determine the need for chemo. An interesting issue that a pathologist friend brought up was that research has shown African-Americans with breast cancer have not fared as well as the general population – could be because of more aggressive strains or just because of the level of treatment. (I brought this up to the doctor as well so he can consider all these factors.) Another thing I learned was that the Oncotype test results will also help the doctor determine what type of chemo, if we go that path, would be best. I wondered if chemo would destroy the “probably benign” lump I have, if it's actually malignant – seems that the chemo treatment you get is tailored for the type of cancer you have, so I’m leaning towards wanting to at least get it biopsied but I'll wait to hear from the docs. I'm trusting that through prayer we will be led the right way.

Thank you Lord for another day!!