Tuesday, December 29, 2009

Did I say tonight? I meant tomorrow night.

Earlier today I blogged that we planned to have our Christmas celebration tonight. We charged the video camera and while Cooper had his afternoon nap I started to put together a great riding toy that cousins Missy and Nicole and aunt Susie had sent for Cooper (thank you so much!). I opened the box, grabbed the manual and right away I realized it needed to be charged for 18 hours before it can be used so I assembled it, plugged the battery in, assembled another toy and then made dinner. At first we were thinking we'd still go ahead and have Cooper open his gifts tonight. Once he was up from his nap we had dinner. About an hour later he got sick - all over himself and me. I'm not sure if it was something he ate (probably - there was at least one new thing he'd never had before - plus he'd been acting fine/normally leading up to getting sick) or if it's a virus that caused it. Either way, we want him to feel good when we have our family Christmas celebration so we decided to wait until tomorrow. Hopefully he'll be feeling better and at least we know his exciting new toy will be charged and ready for him by then too. I'm so excited to see his reaction to the fun things that await his discovery.

Gifts of all kinds

First, I want to say how wonderfully lucky and blessed I am to have such amazing friends and neighbors who have helped me and Cooper to celebrate Christmas in Bob's absence. Because of Bob's job as an airline pilot, he is almost always is away for the major holidays and he was away from the 24th until last night. We missed him and wished he were here with us but we had the best time possible with friends and neighbors who included us in their celebrations. We joined several neighbors at our neighbor Susan's house for Christmas eve and it was fantastic. Super great food (you're a great cook, Allen!), amazing company (we love you Cindy, Dan, Greg, Denise, Clare and John and all the kids!), and it was fun seeing all the bigger kids play with Cooper. Thank you, Susan and Allen, for including us - you are wonderful hosts and friends and we love you! On Christmas day, Cooper and I headed out to join our dear friend Kristy's house where we were welcomed by her awesome family and we had a super time getting to know members of her family that we had not yet met, and watching Cooper and Addison Shea (who is just 3 days younger than Cooper) get cozy. I can't wait to see the pictures Kristy took of Cooper and Addie kissing at the end of the party - it was hilarious! Kristy & family - thank you so much for including us in your family Christmas celebration. You are an amazing friend and I love you so much! Although we were apart from our own family on these special days - with Bob being away and my family being 3000 miles away in Connecticut - we enjoyed the gift of amazing friendship, love, and generosity from the most beautiful friends a person could hope for. Besides those we saw in person, we received phone calls, emails, instant messages from many many others wishing us a blessed Christmas and checking in to make sure we were ok since Bob was away. Christmas is over for most people now, but for us it continues now that Bob is finally home. We didn't open any of the gifts that we bought for Cooper or which have been sent to us by others - they are all still unopened under the tree. We are planning to have our family Christmas celebration tonight now that we're back together as a family. It'll be a beautiful and memorable evening here at the Olsen house. We have received gifts of all kinds this holiday season. Friendship, support, love, generous and thoughtful gifts under the tree awaiting their disclosure. The most important gift of all though - the gift of life - which we cherish the most. Bob is home safely, I am alive and doing well with treatment, Cooper is happy and healthy. I praise God for these miracles that surround us every day. Thank you, God, for these gifts.

Friday, December 25, 2009

Merry Christmas!

Merry Christmas! Happy birthday, Jesus Christ! I'm so blessed, so thankful, for all the countless blessings in my life - including all of you who support me on this journey. Thank you for your kindness, your compassion, your encouragement. I wish you all a very merry and blessed Christmas. May God bless you and your loved ones, today and always. Love, Julie

Wednesday, December 23, 2009

One week post-chemo, Christmas preparations in full swing

Thankfully, I am feeling a bit better each day. I am still out of breath quite a bit but it seems like each day it's a teensy bit less so. That is a relief because a couple days ago I was rethinking my decision about having a blood transfusion and yesterday I made some calls to find out what it would take to arrange for a private blood donation from a very generous friend who is O- (universal donor blood type). If each day continues to be a bit better then I will wait and have my numbers tested next week to see where I'm at before proceeding with a transfusion. If my red blood cell and hemoglobin counts are still extremely low next week then we will proceed with a transfusion so that I'll feel better and be more ready, stronger, in time for surgery mid-January. I've been very busy with work, getting ready for Christmas, and looking ahead to the next chapter of treatment (even had my first radiation oncology consultation yesterday - more on that later). I've baked more (cookies, brownies, banana bread, muffins) these past two weeks than I had probably in all my previous years combined. Doing so is not strenuous, allows me to sit and rest while they bake, and makes me feel productive and festive. Besides baking, I've finished wrapping the gifts, distributed baked goods to our beloved neighbors and friends, and even hosted a little get together "gold party" this week during which my friends and I made some great spending money by selling our unwanted jewelry to a rep from a local gold refinery - it was a lot of fun. Bob was home and helped do a lot of the legwork so that I wouldn't do more than I could/should handle. Esperanza was super helpful too, helping to clean up and do laundry while Cooper napped. We're so lucky to have her. Last night I had a few of the neighborhood teenage girls over for dinner (had lots of leftovers from the party) and to decorate the sugar cookies I baked. It was great fun decorating the cookies and watching Cooper have an absolute blast being silly with the girls. I'm excited to officially be on holiday break as of tonight and am looking forward to the fun Christmas eve, and Christmas day festivities we have planned. Staying busy helps me focus on the positive, staying rested while being so busy is challenging but important so I do my best to be both busy and rested. Sounds funny, doesn't it? Well, Christmas eve day is upon us now. I hope everyone is ready - or at least accepting of (and not concerned about) not being ready. :) I wish you all the most wonderful, safe, peaceful and love-filled Christmas. Cherish each moment and hold your loved ones close. God bless you! Merry Christmas! Love, Julie

Friday, December 18, 2009

A nice break at just the right time - the holidays

Now that chemo is done, I'm enjoying not having to make my way to the doc's office every morning for a shot in the rump (Neupogen). Don't get me wrong, I love the nurses and staff at my doc's office, but it's great to not have to plan every day around a doctor's appointment and even better not feeling like a pin cushion. So far, the side effects of my final cycle are similar to the previous one - mainly swollen and backed up salivary glands, overall body aches, and due to the anemia I'm extremely tired all of the time and frequently out of breath. I'm taking a decongestant to aid in thinning out my saliva to clear up the glands, and just taking it easy to prevent anemia related accidents or issues. I can't carry Cooper for more than a minute before I need to set him down and catch my breath. When we need to go up or down the stairs, I let Cooper go up and down with me right behind or in front of him which he seems to enjoy and prefer anyway. Thankfully, I have not had any dizziness - just shortness of breath and occasionally a teensy tiny bit of light headedness. If I still feel this way by New Year's I'll reconsider the blood transfusion, but I'm hoping that won't be necessary. This is the most tired and physically limited I've felt since the bilateral mastectomy surgery. Even though I'm definitely experiencing the "chemo brain" phenomenon, I do feel clearer and calmer than I have in a really long time - though I admit this is something that comes and goes - sometimes day to day. My sister warriors and I in support group often refer to this as the perpetual roller coaster. I've decided to get off the roller coaster for the holidays and focus on my family and friends, as much as possible, while also working on regaining my strength so that my body will be ready for the next big step in this process - implant swap-out surgery in January. Oddly enough, this type of "work" involves mostly sitting/laying around. Since I'm so frequently out of breath, I'm not able to do a whole lot other than slow stretching and strength exercises. I'm looking forward to resuming my walks but it could be a while before I'm able to and that's OK - just another goal for me to work toward. Keeping up with Cooper (who turns 18 months old on Monday!) is getting harder and harder these days when Bob is away so I've been lining up help on the weekends now in addition to the normal week day help so that I won't get run down and overwhelmed and Cooper will still get the stimulating play time he needs as well. I'm looking forward to this weekend very much. We'll be attending a neighborhood holiday party on Saturday. On Sunday I'll go to church and finish up on some holiday baking and preparations thanks to the much needed and appreciated help from Esperanza and Susan who will be helping me with Cooper this weekend. I'm not sure how much I'll accomplish and I don't plan to push myself - I'll just try to enjoy doing what I can and whenever I get too tired I'll rest and watch Cooper play because that always makes me feel better. When I was a kid I really loved the holidays. I have lots and lots of cousins and we used to all gather at one house on Christmas eve to eat, play and open gifts. As the years went on our families started going in different directions for the holidays for a variety of reasons that are not uncommon to most families - loss of key family members, people getting married and sharing the holidays with in-laws, etc. When that happened it just wasn't as much fun anymore and gradually I became one of those adults that sort of dreaded the holidays. I enjoyed seeing my cousins' children having a good time, and I enjoyed sending holiday cards out but that was about all the joy I managed to find during the holiday season and usually just looked forward to the holidays being done with for the year. I didn't think I was sad at the time but looking back I am pretty sure I was depressed every holiday season. A lot has changed since then. A lot. Cooper's arrival into our lives changed everything for me last year and now that I've had cancer we have even more reason to find joy in every holiday - in every day. That's why every day IS a holiday for me now, regardless of what is on the agenda, as I wake up grateful for another day and chance to live and appreciate all of life's blessings and challenges. Every holiday is a new milestone for me and my family now. Now, I cherish every day and every holiday like never before. I wish all of you joy, love, and laughter this holiday season and all throughout the year. Make every moment count!

Tuesday, December 15, 2009

Wow and woot!

I'm at the cancer center. I'm hooked up and receiving my final dose of chemo (aka God given liquid gold cure juice)! I'm so grateful. So blessed. So happy. Tears keep streaming. God is great.

I'm very anemic. 8.3. But doc is letting me decline a blood transfusion since this is my final dose and I have a good amount of time before surgery and radiation in case my numbers remain low and we need to get transfused or have any other interventions. I am getting a shot to aid in raising my rbc count but its effect is limited usually. I have faith that it will all work out.

Did I mention that I'm immensely grateful and blessed?

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Monday, December 14, 2009

Chemo cycle 8, Part A, days 3-4: Toughest of all

I remember, not long ago, posting an update during either cycle 4 or 5 and saying that I'd experienced my most difficult part of chemo yet at that point. I remember feeling a bit defeated - disappointed that I'd been experiencing that rough patch after having such a sense of accomplishment from sailing through it so well up to that point. Each time I have gone in for a chemo infusion, my doctor has looked at me and my numbers, raised his eyebrows and smirked at me and said things like "you are doing extremely well", or "you are handling all of this extraordinarily well" and I feel a surge of pride and accomplishment when I hear that. And I remember the horrible sense of failure I felt both times that I went in for cycle 5, part B, and was told I would not be getting part B because first my WBC count was too low, and then my platelet count was too low. The doctor and nurses had to convince me that it is a common occurrence and that it was surprising it took 5 cycles for it to happen to me. I remember thinking "but I'm an exceptional patient so why isn't my body cooperating?" (for those who are thinking that is awfully conceited of me to think/say, I want you to know it's a reference to a specific patient type described by Bernie Siegel in Love, Medicine and Miracles). I guess it's true that I'm an over achiever haha. Many times I hear from friends, family, colleagues, strangers even, that they don't know how I'm managing this while caring for a toddler and have a spouse that is away more than he's home due to his job, and working (albeit part time temporarily) - all while on a very aggressive chemo regimen. When I hear that I immediately think to myself "what choice do I have?". I suppose I really do have a choice - I could do what I've been doing which is look on the bright side, make every day/hour/minute count and do my very best to not let the situation negatively impact my life and that of my family's, or I could let the negative thoughts and feelings take over my mind and my body, allowing it an opportunity to manifest itself in many more side effects, keeping me feeling awful all the time, taking out my fear and frustration on those around me, etc. To me, that's not much of a choice - that last option just isn't an option for me since that is not who I am. When this cycle (8A) nearly brought me to my knees with the nausea, exhaustion, shortness of breath, burning belly and related digestive issues, and all over body aches and pain, I did my best to ignore it but it wasn't wanting to be ignored, unfortunately. I kept my commitments and I kept the anti-nausea meds close by at all times. I took extra naps whenever the opportunity arose, and I forced myself to eat even when I felt like I could skip food for a week. I was so glad I'd done the majority of my holiday baking and gift gathering and packaging before receiving this cycle because I doubt I would have gotten it done otherwise. The worst days were this past Thursday and Friday (days 3-4). Everything I did felt challenging, particularly because of the shortness of breath from the anemia - I was completely exhausted all the time. I didn't go out unless it was necessary or I had an appointment or support group scheduled. When home, I stayed off my feet, forced myself to eat and rest, and sought out distractions for times when I couldn't sleep to keep my mind off of how I was feeling. I had trouble drinking water and found myself giving in and drinking more ginger ale and fruit juice dilluted with water. I still felt crummy on Saturday but I was very happily distracted spending the day and evening with my "little sister" and her older sister who I took out for a day (had a sitter take Cooper for the day) and had the girls spend the night for a girls' night of homemade organic pizza, movies, and baking cookies :). Then Bob came home on Sunday and everything seemed/felt better by that point. I feel fairly confident describing those days as being the worst of my entire chemo regimen since this is my final cycle and Part B has always been easier to take than Part A - now let's hope and pray that continues to be true as I finish out this cycle tomorrow with my FINAL CHEMO INFUSION! =). However, Dr.B did warn me that the anemia could complicate things tomorrow if my red blood cell count dips down to an 8 (I was at 9 last week - he said my "normal" was trending 12-13 based on my numbers at the start of chemo) at which point a blood transfusion would be likely. I've been eating some spinach the past couple of days in hopes that it would help out here but we won't know until tomorrow when I arrive and they draw blood. I praise God for carrying me through this challenge and opportunity. Yes, I did say "opportunity", as crazy as that may sound. Love, Julie

Friday, December 11, 2009

Tech tested doc approved!

Normal! Yes! Praise God!

Apparently I may need some stronger help for my digestive system this cycle. Not surprising since I have felt like I've ben hit by a bus the past two days.

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The wait and the worry

This morning I had the ultrasound. Praise God the technician showed compassion and told me that things look normal (normal for menopausal status, that is) in the southern region. I'm sitting in the exam room waiting for Dr.N to come in and confirm that conclusion.

I remember the days of pregnancy ultrasounds. I got them every two weeks because of my high risk status with the incompetent cervix. Every visit brought fear and worry that I'd have to be admitted and/or the baby would be coming too soon. I trusted God to protect that precious baby and He did. I'm trusting Him now to protect me so I can be here for Cooper for many many years to come.
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Wednesday, December 9, 2009

Chemo cycle 8, part A - days 1-2

It's hard to believe that I'm nearly done with chemo. I've already received cycle 8, part A, and have just one more infusion (part B) next Tuesday and then the day after I'll get my final shot (either Neulasta or Neupogen) to boost WBC production and then I'll be done with chemo! Just before receiving #8A, Dr.B informed me that I'm even more anemic than last time and that if I go any lower when I go in for #8B next week then I will probably have to go to the hospital for a blood transfusion - he didn't want me to be surprised by it so he was letting me know now. ;/. They're working on getting insurance approval to give me another shot like I had once before for this but he said it's benefit is limited and it could take too long to take effect. So....if this happens my completion of this final chemo cycle could be delayed a bit. But I have faith that my body will do it's job...that my prayers and the prayers of so many of you for me will help me avoid a transfusion and delay. I also have faith that if I do end up needing a transfusion and getting delayed it will be what needs to happen as part of God's plan for me. So I'm not worried. When I went in for my shot this morning I joked with the nurses that I might just have to keep going in to talk to them even when I have no other reason to be there after chemo is finished. They said they won't mind at all seeing as I come bearing gifts every time I show my face there. The other day one of the nurses told me that some of the patients even come in asking "is Julie going to be here today?" :) That put a huge smile on my face. One of these patients was there yesterday during my chemo infusion and he and his wife conversed with me the entire time he was there. It was his final chemo yesterday and when they left (about halfway through my infusion), they handed me a paper with their name, email address and phone number and asked if I'd share mine with them so they could keep in touch. I was happy to do that. I have met some incredibly brave and wonderful people through this journey - many of whom I will always consider as part of my extended family now. Anyway, it's not like I won't be there plenty of times once chemo is over. I'll have plenty of blood draws, scans and exams, to be followed closely for the next few years, especially since the cancer was triple negative, making the first three years critical. And while the chemo chapter comes to a close, there is still lots of treatment left for me - most notably the radiation chapter which will have me in another doctor's office DAILY, M-F, for 2-3 months, beginning in February. Between Dec.16th and Jan. 14th the only appointments I'll have will likely be blood draws to evaluate my fitness for my next reconstructive surgery on 1/14, and consultations with both of my medical oncologists, the radiation oncologist, and the holistic M.D., to discuss my post-chemo path. It may sound like quite a lot in a month but really that's nothing compared with getting chemo 2 weeks of every month and daily visits for shots for the week following chemo infusions. I'm told by many of my friends who've gone before me that radiation isn't quite as difficult as chemo so that is nice to hear, although chemo wasn't too bad for me - praise God! So far, this cycle feels similar to the very first one. Today I woke with a burning sensation in my belly. Thankfully though, it didn't lead to the very unpleasant digestive symptoms that followed that feeling in the first cycle - at least not so far haha. I had a twinge of nausea that quickly went away once I took today's dose of Emend and Zofran in the morning and didn't need to take anything later in the day so that's good. My salivary glands are still not happy so I need to force myself to drink more water. I haven't mentioned this yet but for the past three weeks or so I've had some strange feeling in my pelvis area - not quite like period cramps, more like a twisting sensation that comes and goes. I mentioned it to Dr.B (my local medical oncologist) and told him I had an ob/gyn check up later this week and he suggested I get an ultrasound to have Dr.N (my ob/gyn) take a look at my ovaries and that region to be sure there isn't anything going on there - so I'm having an ultrasound on Friday to take a look. Dr.B said that chemo causes aches and pains all over and this could be just another location of that, but it never hurts to take a look and be sure. I love Dr.B. Many doctors would just assume it's one of those aches/pains but he knows this is not the time to assume anything - if there's something going on down there we need to know now. I trust that all is OK but I continue to pray and ask for prayers that is true. Thank you all for your continued support and prayers. I'm grateful beyond what any words can express.

Wednesday, December 2, 2009

Good news - no infection! :)

I had a follow-up visit with the ENT (Dr.V) today. They tested my hearing to see if I'm experiencing chemo-induced hearing loss (which would be irreversible!), and thankfully I am NOT - hearing is good. :) Next, doc examined my ears, nose and throat again and found no new signs of infection. He said the lack of new/progressive symptoms, combined with the fact that the decongestant is helping cut down on the whooshing/waves sound I'm hearing points to this being what I had hoped for out of the three possibilities -- chemo thickens mucus and my salivary glands are swollen from the mucus, causing a backup of it into the eustachian tube/canal. As long as we can manage it with decongestants and fluids (staying hydrated should help thin out the mucus), I should be able to avoid it turning into an infection. That's a relief! :) On another happy note, Cooper finally received his H1N1 vaccine this morning so he'll be protected from that craziness within 2 weeks of receiving it. It's nice to know we both finally have some protection from that hot mess.