Back for one last surgery...

The medi-port is out... this marks the real end of this saga for me. No more visits to the infusion room for the monthly flushing of the port. No more rubbing of my bra strap against the little device. And no longer a cancer patient! (I'm claiming that in Jesus' name!) The procedure was quick and by tomorrow I will be able to take the bandage off. I even got to bring the port home with me, but I'm already ready to throw it in the trash! I don't exactly need it to remember this experience ;-)

I thank God for this New Day!!

Moving On

I am 11 weeks past chemotherapy, 1 week out of radiation, 1 day without my wig, and one step at a time, I am putting this phase behind me! A few symptoms linger, like the fatigue, fingertip numbness, and hot flashes, but over all I am doing well. I exercise nearly every day, and am up to a half hour walking at an 8.5% incline at 3.5 mph each day. Exercise is so fundamental to fighting a recurrence that I don't allow myself to even think about whether I feel up to doing it - I just go to the gym and before I know it, I am done and feel good about myself.

I just got a call to say that the wife of a friend of ours was just diagnosed with breast cancer. I thank God that I feel I am in a position now to help others through this. Her husband asked how do we deal with this, and I told him that you need to just accept it as you would any other challenge in your life (being unemployed, for instance), and face it with determination to make it through despite how dark it gets. The worst thing you can do is to sink into depression, feeling sorry for yourself. You need to take it one day at a time, and with God's help you can stay positive about making it through.

I Thank God for this New Day!

"Our times are in your hands...." Ps. 31:15. I am in awe of how God can move in our lives! The call today from the oncologist (Dr Pierce) to say that our insurance company had reversed their decision not to cover the IMRT, after twice denying requests from her for it, blew me away... She told me on Tuesday that after the 2nd denial, they were going to try and re-work their original plan (with traditional radiation therapy) to see how they could avoid my heart. I asked her what if they could not achieve that, and she said she'd go back to the insurance company but she doubted they would change their minds. Chinya and I had just had lunch to celebrate our 14th anniversary, and were taking a walk when the call came. It was disappointing but after all we have been through, we've come to a point where we know that God will give us the ability to face whatever challenges we meet, even if that meant paying for the IMRT ourselves. Last night I listened to several sermons by Alistair Begg, and read several psalms - I am particularly intrigued these days by David's devotion to God, despite his shortcomings and weaknesses. I went to bed trusting that since God is in control, we don't need to be anxious about the uncertainties in our lives. Waking up to news like this is awesome! I praise God for His faithfulness!

It's all moving forward quickly now. I start radiation on Monday - 25 treatments over the 5 weeks. I didn't get any other instructions so I assume that preparations and side effects will basically be the same as for the other treatment. It feels so good to have this settled so I can finalize plans for the next couple months.

I thank God for this New Day!!

Prepping for Radiation

Today the reality of radiation started to take shape in my head. I guess till now, my only focus had been getting through chemotherapy... I figured the radiation step was trivial. They'd shoot the beam at me and slowly kill off the cancer cells over the course of the 6 weeks, in 5-minute daily increments. I went to the appt today to get CT scans done and my tattoos (X marks the spot) put in, and I was a bit taken aback by how the radiation techs and the doctor seemed to struggle somehow in getting me positioned correctly in the machine. I had to lay on my back, with my left arm above my head, my shoulders aligned straight, and my back supported at about a 15-degree angle. They wondered if they'd be able to get the whole breast in from the position towards my left. They had to go back and forth about it for a while before they finally slid me into the CT machine (a donut-shaped machine) and took the scans.

After it was over, a nurse told us (Chinya and I) about how a typical day would go, what lotion and powder I'd use afterwards, to avoid Vit E and C supplements, how my fatigue would continue, that I would feel sharp but infrequent twitching (I think that was the word), and basically I should be careful with the skin in that area for the duration. I'd should expect to be in and out within twenty minutes or so each day. My next appt was set for next Thursday, when we'd do a trial run, before starting on June 1 (our 14th anniversary actually!).

I thought it was all set until I got a call from Dr. Pierce (the radiation oncologist) later in the afternoon. They'd been over my scans and basically the tumor had been directly over my heart and the plan they had would not work. They were afraid they could not prevent the beam from damaging the heart, and they needed to use IMRT (Intensity Modulated Radiation Therapy) instead. An advanced mode of high-precision radiotherapy that utilizes computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. (Internet) That meant they had to rework the plan for me, and would contact me soon to re-schedule. I was a bit shaken up by this initially but remembered that this why we chose to use Dr. Pierce and her Fairfax practice in the first place (meaning I drive at least 40 minutes each way, instead of just 5 minutes to get to the Loudoun practice). When we first met, she had pointed out before that the proximity to the heart was a concern, and it would require an experienced radiation oncologist. God is still in control.

I thank God for this New Day!

I had my last trip to the chemo infusion room yesterday! I claim that in faith.

I met two new patients, and saw another for the second time. We had a lively time talking - the husband of a patient with lung cancer told us at least 5 great jokes. He was quite a character. It was her first treatment, after radiation which shrunk her tumor to half the size, and afterwards we talked about losing hair, head coverings, etc. What made it particularly special to have her hubby (Bill) telling all the jokes was that on Tuesday I dropped in at the Life with Cancer Center, which is just next door from the doctor's office after my appointment. Just planned to go to the library and see if they had some books I could take with me. Turns out a class was just starting on Spirituality, and I decided to drop in. It ended up being my only class I've taken during my treatment. Anyway, there were mostly older ladies there, and the presenter was giving a talk about Laughter. Was quite entertaining. Towards the end, they asked whether the newcomers (me and a lady sitting next to me whose husband was recently diagnosed with Stage 4 colon cancer) if we didn't have any funny stories to share, and how were we getting through without humor? The lady said that they were just trying to make it. I mentioned that it took till I got nearly halfway through chemo before I was at a point where I was in the mood for that. Kemi had given me a book on chemo jokes, and I never got to the point where I wanted to read them. I did share some funny things that had happened the night before, things Keenan said/did before going to bed, that reminded me how sweet it is to end a busy day with laughter!

I'll go out this rendition of this song (I Just Can't Give Up Now, I've Come Too Far From Where From Where I Started From) by James Cleveland- "I Don't Feel No Ways Tired" - http://www.youtube.com/watch?v=P_4tDOO1fZ0&feature=related. There's nothing like an old spiritual...

I thank God for this New Day!

Looking Forward

It feel like ages since I've been on this blog - had my 5th treatment, and am just a week away now from the last one. I'm now at another level emotionally - I can now see my life beyond this phase and am reading books that talk about life with and beyond cancer, and getting ideas for a more healthy lifestyle for the whole family, including diet, exercise, and lowering stress. I remember how towards the beginning of treatment, I couldn't read about other people's experiences with cancer - I felt too helpless with the news myself and it just made me more scared and uneasy. Now I feel so much more able to face my fears, knowing that I will be able to find the strength and grace to deal with whatever comes, with God's help, and the support from everyone around me. This has come to me just in the last couple weeks - you need to hit bottom sometimes, which I sorta did emotionally after the 4th treatment. So thankful to be beyond that, but I am sure it will continue to be something I will have to deal with as I live with the uncertainty of life as a cancer survivor.

I went for my first 6-month mammogram yesterday, and the radiologist said that it looks good. We were very pleased to hear that though it's the MRI really that will show any changes in the abnormalities they saw last time. The MRI's next month, and a follow-up with the breast surgeon will be a week or two later. I've also scheduled my radiation (June 2 to July 14 or so) to be at 10am, so now I can start planning for what camps to have the kids go to for the weeks they are out of school, and I will have this treatment (about 3 weeks). Tomorrow I have an ultrasound to check what showed up on the CT scan in Jan, and they feel are fibroids... I pray that goes well also.

Otherwise I feel great - in the mornings, that is. I did a mile walk at the gym this morning, and think that I will do that more regularly instead of my evening walks that I have been trying to do 3-4 times a week. I am out of energy around noon and though I can regain some by lying down or just resting, I think it will be better to do it early and not think about it all day.

Been listening to some good audio books from Kemi and Aunty Marilyn, and getting better at Sudoku. Also finding out more about activities at the church - so far, the people have been quite welcoming.

I thank God for a New Day!!

Resting / Waiting

I just read today's entry from Streams in the Desert by L.B. Cowman, a daily devotion Nyambe sent for me, and felt I wanted to share it. It was written by Frances Ridley Havergal (who also wrote the hymn "Take My Life and Let It Be")

Have you ever heard of anyone being greatly used by Christ who did not first experience a special time of waiting, or a complete upset of his plans first? From the apostle Paul's being sent into the Arabian wilderness for three years...down to the present day, it seems those who will be used will have a time of waiting... My own experience is far less severe than Paul's but reveals the same principle. Once when I thought the door was being thrown open for me to enter the literary filed with a great opportunity, it was just as quickly shut. My doctor stepped in and simple said, "Never! You must choose between writing and living, for you cannot do both." The year was 1860, and I did not come out of my shell of isolation with my book Ministry of Song until 1869. By then I saw the distinct wisdom of having been kept waiting for nine years in the shade...

I laid it down in silence,

This work of mine,

And took what had been sent me--

A resting time.

The Master's voice had called me

To rest apart;

"Apart with Jesus only,"

Echoed my heart.

I took the rest and stillness

From His own Hand,

And felt this present illness

Was what He planned.

How often we choose labor,

When He says "Rest"--

Our ways are blind and crooked;

His way is best.

The work Himself has given,

He will complete.

There may be other errands

For tired feet;

There may be other duties

For tired hands,

The present, is obedience

To His commands.

There is a blessed resting

In lying still,

In letting His hand mold us,

Just as He will.

His work must be completed.

His lesson set;

He is the higher Workman:

Do not forget!

It is not only "working."

We must be trained;

And Jesus "learnt" obedience,

Through suffering gained.

For us, His yoke is easy,

His burden light.

His discipline most needful,

And all is right.

We are but under-workmen;

They never choose

If this tool or if that one

Their hands shall use.

In working or in waiting

May we fulfill

Not ours at all, but only

The Master's will!

--Selected

Mid-Cycle

It's Day 11 after my 4th (!!) infusion and I feel great (the awesome weather has a lot to do with it as well!). I'm on the deck outside my room, and am looking out on the most perfect day. The kids are enjoying the last of the weekend and I'm in the middle of a new good book (Bel Canto) - not that I finished any of the others I have been reading. I can't explain what's made the difference but I'm now able to breath more easily, relax more readily... I think it's just time away from working as well that has helped. Regardless of what it is, I thank God for it.

On Friday morning, I watched a movie on TV - an oldie called A Secret Place from the 40s - and actually sat there all the way through, savoring it. It doesn't sound like a big deal but it's something I would never had the patience for before I got sick, or felt relaxed enough to do since I started chemo. Afterwards I went to lunch with an ex-coworker - I'm supposed to do it again next week with another group but I plan to ask that we wait till my treatment is done. Though I felt fine as we sat there, that afternoon/evening I was especially weak and tired. The headaches return most days, and I usually time Tylenol but really I know it's just exhaustion. I've come to think that the steroid's effect wears off around Day 9, and I start to sleep through the night again. It happened that way after #3 as well. And this time around I didn't go through my insomnia like before - Praise God!

I didn't do my blood counts after my first week this time - I just assumed that it dipped and I had to be careful. The area around my medi-port was more achey this past week but it could be cos I was laying on my left side, and straining it. I've switched over the past few days, and I feel better. My tongue still feels weird but it's nearly normal. I decided this time around to be good to my stomach, so it'll be good to me! I avoided rice (hard to digest - you're right Uncle Eric :-)) and had lots of soups, eggs, avocados, some baby food, yogurt...

We went to the episcopal church again today and I felt such peace. The setting is beautiful - large windows with trees beyond cover the entire front wall - and the hymns just put me in the right mood for worship. They had baptism and confirmation today and I am pleased that the kids enjoy the more formal service as well.

I'm expecting a good week and a half, and have only 2 more to go (Apr 22, May 13)!

I thank God for this lovely day.

Uneventful is Great

The last 10 days have been quite uneventful wrt side effects, and I'm so grateful for that! I've been sleeping easily, and doing errands, helping the kids, cooking, and spring cleaning. Of course, I get tired so I lie down for periods during the day to recharge.

I like tracking the things I've been able to do since I've felt better:

I went to Keenan's band concert last Thursday (he plays clarinet) and was impressed how much they've improved in a year.

On Saturday, I went to a funny movie (My Family Wedding) with Kemi, Yinka, Olivia and Beckie. As Yinka and Olivia got ready to leave, Yinka mentioned reading about risk factors that can lead to breast cancer. We agreed that there didn't seem to be any direct correlations... that it can just happen - to large and small women, large and small breasts, those who eat well and those who don't, those will cancer in the family and those without, etc. The important point was that as each of us was either already 40, or had a sister ,aunt, grandmother or mother who had had cancer, so we all need to be diligent with checking for lumps, and following up with mammograms. We started to talk about how we face stress each day, how we can just keep going and going, and actually be wearing ourselves out while not really enjoying what we do. As Olivia said, at times we get so stressed about keeping it all going, that we forget to ask "What's the worst that could happen?" if I let go... It seems each of us wants the same thing - a way to earn money that we look forward to doing each day, and having the energy to give our families our love and support to keep them happy too. We need to keep trying to consider the options that can lead us there.

We visited a new church (episcopal) for Palm Sunday cos I missed the traditions of the services in Freetown, with the hymns and the handing out of palms - Bianca wants to be sure that we go again on Easter Sunday cos she thinks it will be really 'festive'.

I took walks with Monsoon (Kemi's family dog) and the kids, and saw deer (which terrified Bianca and Tarin) and a Great Blue Herons (needed Keenan to identify it for me) several times. On Sunday, we went to Lifetime Fitness instead cos of rain, and since that was new for Bianca, she had to try nearly all the machines....

With Kemi and Enmartz's help, was able to get the furniture Bianca's room rearranged yesterday - really wanted to get that done before my next treatment tomorrow.

Anyway, I have started to take the meds in preparation for tomorrow (Dexamethazone, helps prevent nausea). I welcome this next round of drugs and will work to keep my mind focused on the good they are doing in me over the next week.

I thank God for this New Day!

Sleeping

This week will be remembered for the hours I spent trying to sleep. I have no idea what set it off but starting Monday, I found I couldn't get my mind to settle down, got only 4 hrs Monday, and 3 hrs Tuesday. I spent all Wednesday night awake, making the next day very tense. I asked my doc if it had something to do with the sedative I'd been on; but in the end I figured it was just self-perpetuating. I couldn't sleep cos I hadn't been able to sleep in the hours before that. But even that explanation doesn't make sense cos I've never had insomnia so bad. On Wednesday, though I tried reading and watching a movie, I started to panic, and by dawn, I was felt I was going out of my head. On Thursday though, I delved deeper into the book I was reading about women in the Bible (Tamar, Hagar). I focused God's faithfulness, and how I knew that because of that I would get through it. I finally dosed off around 3pm, and I woke up more excited than I ever remember being! I couldn't spoke praising God for the blessing of sleep. On Friday night, I was able to get about 6 hrs, and last night was good as well. I just thank God for the lessons I learned from it all though. That no matter how dark it gets, the moment will pass and you will be able have it all behind you. You can't allow yourself to get so overwhelmed with the pain that you are going through that you forget that.

I thank God for this beautiful weekend!!

CBCs and Sleep

My blood work today was low again - 1.8 for WBC - so it's higher than last time (1.2) but still lower than it should be (4.0). It's OK though - at least I know the lower dose is doing its job, and the side effects are better. The only troubling thing now is sleep. The sedative is losing its effect, so I lie in bed for hours not really sure why I can't sleep. I called the nurse about it this morning but didn't hear back... I'm starting to watch more movies though - saw In The Still of the Night today on Hulu. It's a beautiful day here, and we aired the house out. I'm planning to plant some tomatoes indoors later today - have everything ready to set it up in the bathroom.

I thank God for this New Day!

Boxing Match

As I stepped out of the shower last night, I was thinking of what a good analogy was for going thru chemo - was is like a doing a triathalon? Hmm - didn't seem right cos I see those triathaloners and they look pretty tough... Then this morning it occurred to me - it's like a boxing match. Before I started I was so ready. I was like, just give it to me, nice and strong, so any leftover cancer cells will be out of me forever! "Give me your best shot"... A week or two after the first one, Kemi asked if I felt like just when I was getting better, it was time for another go, and whether I was dreading it. I said No - I was getting stronger and would just enjoy the new found energy - I'd be ready. It's so different now. Just thinking about the infusion area, seeing cancer patients, or even talking about the meds, makes me feel ill. I feel like a boxer, trying to get up after being hit, knowing that you're just going to get hit again. In this case though, winning is just not giving up - getting up ever time and making it to the bell.

The Storm is Over Now

...the storm is over now

I can see the sunshine, somewhere beyond the clouds.... (R.Kelly)

This song's been ringing in my head this evening - I feel that I'm slowly breaking out of the dark cloud of my last treatment. Food is regaining it's taste, the nausea is passing, I'm starting to return phone calls... Though I'm no less tired than before, the lowered dose has kept me from getting those terrible headaches I had last time. I'm determined to get at least 7-8 hrs sleep at night, which means I sleep before the kids sometimes and have to take 2 sedatives (one every 5 hrs or so). I don't stress as much about eating enough during Days 2-4 - everything tastes so blah that I just focus on getting the liquids down (not an easy task). Today's been good but I decided to just eat what I have a taste for, and drink ginger tea to help settle my stomach - works for now.

Last week was such an overwhelmingly emotional one. It's one thing to leave a job, but leaving one when you have cancer, makes it so much more intense, and it made saying goodbye much harder. I was taken aback by things that people said, and their generosity.

Before I went for this last treatment, I thought a lot about how people are able to stay positive when they are physically in a lot of pain or discomfort. My daily devotion on March 10 talked about how at times people mistake their feelings and emotions for faith - how Christians get in trouble when they walk by feelings not faith. It ended by saying "When I cannot feel the faith of assurance, I live by the fact of God's faithfulness. (M. Henry)" I have reminded myself of the fact that God is faithful so many times over the past few days. I even used it as a way to put myself to sleep, running through the alphabet of people who have testified to His faithfulness... A - Abraham; B- Barnabas; C-Chinya, Caleb; D- David, Daniel; E-Esther, Enmartz; ...

I thank God for this New Day!

Lowered Dose

I had my pre-infusion appt today, and Dr. Robert decided to reduce my chemo dosage by 10%. My white blood cell count has dropped quite low after each of the past two infusions, and I cannot handle the antibiotic that he had wanted me to take to prevent infection, so he said that it's dangerous to keep it the same. I asked how long it takes for the Neulasta (the shot I take the day after chemo to boost my immunity) to take effect, and he said that it starts right away but it only helps shorten the duration that I may have low immunity, and doesn't keep the white blood cell count from dropping. He said that the initial chemo dose that was developed for me was just an estimate of what would work, and that despite the reduction, he felt that the drugs would still have the beneficial effect that they expected them to. I asked him about some other symptoms I've had - swollen and watery eyes, for instance - and he said that they are all effects of the drugs. Knowing that kept me from scheduling appts with other doctors to figure out what was going on... Anyway I am thankful that my blood work today turned out to be within the acceptable range, and I am in good shape for Thursday.

It's weird getting used to having a fixed amount of energy to expend during the day... I find that though I wake up feeling pretty normal these days, it's a mistake to spend too long cleaning up or cooking or even talking for long, cos it means that by early afternoon, I am completely drained. The past week's been pretty busy as I tried to wrap things up at the office, and also tried to fit in some fun things before the next round. I went to lunch twice with friends, to Keenan's Tae Kwon Do belt ceremony, shopping for cleats with Keenan, to see 'Shutter Island' with Chinya, and drove myself to Maryland to Miranda's house. In a way I had to make myself do these things, cos what my body was telling me to do was to just stay put, but mentally I had to make the most of my good days so that I'd remember I did when things got rough again.

Most of all I just want to say again how blessed I feel to have help/support from so many people - phone calls, food, messages, gifts, cards... I wait for the day it's my turn to give back, but for now all I can do is say THANK YOU!

I thank God for a New Day!

Hair Loss

If I could do one thing over, it would be to have just shaved my head before the hair loss started, but I guess a part of me thought maybe it wouldn't happen. The infusion nurse had told me she'd never seen anyone on my chemo drugs/dose not lose theirs, but... Anyway, it started about 2 weeks into the first chemo round. By then Kemi had cut my hair to about a centimeter or so high so I could try wigs on. From then on it came out slowly at first, mostly as I washed it. What I hadn't expected was that it would hurt so much - my scalp became unbelievably tender, and I had terrible headaches starting by 8 or 9 or so every evening. It was as if my scalp was burning up and the only way to get relief was to wash my hair, and coat my hair/head with aloe vera gel. The advice nurse said that it was the weight of my remaining hair pulling on the dying hair cells. By Day 17, the pain got to be overwhelming and I asked Chinya to cut my hair down with his clippers. It's was a real bonding moment :-) Later, I got lots of comments that I looked better that way than wearing the wig, and I should just go with the buzz cut instead. I had to remind them that all of it was supposed to fall off - none of us could really visualize it yet. I said, I'm going to be bald... not really believing it myself. Anyway, it became quite traumatic, as I continued to watch more and more hair come off during my showers, or as more ended up mixed up with the gel on my hands as I rubbed it on. Finally, around Day 20 or so, I used the electric razor and ended the ordeal. My wig fits on great now and is so comfortable - it has a medistrip in the front that kinda adhers to the scalp. And best of all, no more burning headaches during this second round. So, if ah bin no...

Thank God for this New Day!

My Faith Journey

A friend had said back when I started this blog that it should be my 'faith' journey, not cancer journey. Though I appreciated her point, at the time, I was so focused on the disease that I could not see clearly beyond it. I have come a long way since, and now, on Day 9 following my second infusion, I see clearly that this is a FAITH journey at its heart. There's so much I could say about how I know that this experience was designed to reach areas of my life that I was holding on to with all my might, but yet were hurting me and those around me. Yesterday I fell to the level of ultimate brokenness/surrender. I had to admit that I was not able to keep on the juggling act - I couldn't carry on as before - and I had to quit my job. I've shed many tears over the past week since my last infusion, over just feeling so helpless and unable to function, or just because of frustrations with not being able to have it go better or feel stronger. Yesterday, as Chinya and I spoke after making the decision to quit, I said to him - enti you kin say ah hard (you always say I am so tough), look at me know - it's the weak Kule. And he said Praise the Lord! Shortly afterwards, I was writing in my journal and noted the day's scripture at the bottom of the page - Matt 11:28 Come to Me, all of you who are weary and carry heavy burdens, and I will give you rest. My journal entry had been about how the weight of having my job (and being PM on several projects that were in need of attention) had just gotten to much for me. I guess I can be very stubborn and letting go and realizing there is nothing for me to do now except rest and get better, ended up in being a major struggle within me. I praise God though cos he wants us at this point where we are not holding on so tightly to certain things in our lives that we lose ourselves. I listened to this sermon online today and it couldn't have been more ideal for where I am right now - God's Pathway to Brokenness. http://www.intouch.org/site/c.cnKBIPNuEoG/b.4945473/k.BE35/Home.htm

I thank God for my faith journey!

Fatigue and WBC counts

I think the worst is over: I had about 4-5 days of fatigue, followed by body aches, headaches, stomach cramps, low white blood cell count, insomnia, sore mouth,... but here I am on Day 12, and I feel pretty good. Each day had it's own challenges, and I found it useful to track how I felt, what I ate, what meds I took for relief, how long I slept, how much water I drank, any negative reactions I had, etc. The biggest shock was how low my white blood cell count dropped by Day 7 (to 0.1), and because of the threat of infection, I had to be away from everyone for a few days (Thur eve to Sunday eve). By this morning, I just had to know if we needed to keep that up, so I asked for another blood test, and turns out the WBC count had risen to 16! Praise God! Turns out my RBC is on the low side of normal, so Bianca and I celebrated the results with hamburgers for dinner. I've been living on soups, jello, toast and smoothies for the past week and a half, so I'm not surprised that I'm low on iron. I guess the next most difficult aspect was dealing with how tired I felt, especially on Saturday and Sunday (Days 3 and 4). It all seems so long ago now, and I'm just pressing forward....

Thank God for another day!

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!!