Caring Bridge

I've decided to start a new website at https://www.caringbridge.org/visit/kimschaffer. Visit me there! :)

Kim

Nourished

So, the retreat was WONDERFUL!! Like most vacations, it took me a couple days to adjust. The retreat was intensive... my day started with yoga at 6:30 and then back to back sessions until 7-8:00 at night. The hotel was awesome. I slept so good the whole time I was there (on amazing feather beds!). I ordered room service several mornings. The lunches and dinners they provided were AMAZING... healthy, balanced, and nourishing to my body and spirit.

I learned so much about the ancient healing tradition of Ayurveda ("life wisdom"). In a nutshell, Ayurveda believes that, in order to live a happy, healthy life, we need to find balance in body, mind and spirit. Meditation is one of the key components to Ayurveda. Through quieting the mind and the endless stream of thoughts, we can slow down and be tuned into to what we really need to find balance in our life. I also learned about how everyone has a body/mind constituion, called your "dosha" (Vata, Pitta, or Kapha). Just as their universe it made up of the elements space, earth, air, water, and fire, so are our bodies. When our bodies are out of balance (i.e. too much "fire", or Pitta, causes problems such as heartburn/acid reflux, too much "water" or Kapha causes sinus congestion, etc..) A body/mind/spirit that is out of balance is prone to disease, physical discomfort/pain, and illness. By tuning into what our bodies are telling us we need, we become healthier and more balanced. Of course, food is a key component, since it is what nourishes the body. In Ayurveda, they believe that you should include 6 tastes at each meal... sweet, sour, salty, pungent, bitter and astringent. (Many Indian meals naturally include all of these tastes at each meal.) I also learned about ways to release toxins in the body through proper nutrition, herbs/spices, massage, and other techniques. Some of the sessions I attended were "Imbalance to Disease", "Accessing Inner Silence", "Food as Medicine", "Soul of Healing", "Love as Medicine", and many others. Coincidently, a lot of information was shared about recent melanoma and breast cancer research.

There was also a wonderful guest speaker, Dr. Viccario, who is an Oncologist in California. He led a great session on Integrative Medicine in Cancer Care. I learned about ways to include complementary medicine in the treatment of cancer and create an "Optimal Healing Environment". He believes in a multi-disiplinary approach to cancer care that includes many different modalitiess, including traditional Western methods, such as chemo/radiation along with other "alternative" methods". He strongly believes that the medical community needs to shift their focus to treat the mind/body/spirit in cancer care. I couldn't agree more!!!! Their cancer clinic is very progressive and I hope more hospitals/doctors/clinics follow Dr. Viccario's lead! Here's a link for more info. www.sdcancer.com. I also met a woman at the retreat who just finished chemo/radiation for breast cancer. We had many great conversations about the emotional trauma of cancer and we were able to support each other in our fears, anxiety, and finding ways to heal.

Deepak Chopra was amazing. His thoughts on spirituality, healing, interconnectedness, and ways to live a healthy, happy life are inspiring and refreshing. My soul is filled with gratitude and love when I hear him speak about universal truths, such as love, compassion, connecting with the universe/nature, finding our life's purpose, etc...

Overall, the experience was nourishing on every level! I was so glad I went and I'm motivated to implement changes in my life. I'm hoping to go to the Perfect Health program at the Chopra Center and their Seduction of Spirit retreat in the future. :)

With love,
Kim

Closer to Fine

I'm listening to Indigo Girls, can you tell? :)

Well, this whole experience is the journey of a lifetime and always changing. Last week, seemingly out of nowhere, my hair started falling out in huge chunks. Woah!!! When I took my hair down last Thurs., I realized I had a big chunk of hair missing in the back. I was quite traumatized, especially since hair loss is not common with interferon treatment and why is it starting now? I'm going to have to go get my hair cut soon to even it all out. Hopefully, the hair loss slows down... from what I have read, I probably won't completely lose my hair. My doctors are also going to check my thyroid levels on Friday to see if they're O.K. I've lost 20 pounds since December. Hair and weight loss are common side effects with thyroid problems, which can be a side effect of interferon treatment.

I'm really looking forward to going to the Deepak Chopra conference next week. I'm trying to not focus on how much I will miss Todd and the kids and focus on this amazing opportunity to be immersed into a healing and nurturing setting. I need to continue my treatments while I'm there, so I'm really hoping I feel O.K.!

I have lots more things I want to add, but I'm not feeling like my thoughts are flowing very well today. I will post more later...

xoxo
Kim

Journey into Healing

I haven't updated in awhile, but wanted to share a little of what's going on. First of all, I am very excited because I've signed up for Deepak Chopra's 5 day workshop, Journey into Healing, in Chicago on May 27th-31st! :) http://www.chopra.com/journey The retreat will include meditation instruction, yoga, and mind/body healing sessions. Since my month of intensive treatment finished, I've really struggled with finding my way on this healing path... I think this retreat will be empowering and very healing for me.

The shots haven't been as easy as I had hoped. I've been dealing with fevers all the time, even on my "off" days. I've also been extremely tired and weak. Last week, I finally called Dr. Albertini because I really felt like I was not coping well. He had me skip my treatment on Fridy to give me a break. He was very supportive about the physical and emotional toll the treatment has taken on me. After I resume the shots, we are going to reevaluate how things are going and at that point, we'll discuss whether I need a dosage reduction or whether we want to stop the shots altogether. Because of the study that was released not too long, there is the question whether the shots offer any added benefit anyway! So, we'll see what will happen. For now, my plan is to just keep doing the shots until I talk to Albertini again.

O.K., Drew wants to play outside. More later...

Kim

Spring is here!

Our trip was good. The kids had a great time and were sad to leave! Avery had the best 6th birthday... breakfast with the princesses (she thinks they were real), Epcot, Bibbity Bobbity Boutique (got all dolled up like Sleeping Beauty), Magic Kingdom, and finally crashed at the hotel at midnight! :) Drew dressed up like Buzz Lightyear that day, but was sure to reassure people that his name was really Drew and that he was just dressed up in a costume. We had nice, warm weather all week, too!

I started my shots on Monday night. The shots are easy... actually, painless! Unfortunately, it was a VERY rough night. Having a week off had something to do with it. I was awake all night with severe body aches, chills, and fever. Tylenol and benadryl didn't even touch it. I ended up in bed most of the day on Tuesday. Needless to say, this was quite a blow for me and all night I worried and feared that this would be life for the next year! The good news... I talked to my doctor yesterday. He suggested I start taking Lorazapam to help me sleep. I took it last night with Tylenol and last night was dramatically better! I slept better and only had minor body aches and a low-grade fever. Yeah! (He's mailing me a Rx for oxycodone, too, if I need it, but I really hate narcotics!) So, right now, I'm on a serious mission to get a good "cocktail" that will help me through this. I'm going to go back to the Acupuncturist to help with my energy level and side effects. I'm also seeing my Physical Therapist today. My back is seriously screwed up and I have so much tightness and discomfort at the site of my surgery. I'm actually looking FORWARD to the pain because I know it's going to help so much!

On a positive note, I had a LOVELY day with the kids yesterday. This spring weather is really picking up my spirits! Drew and I went to his Little Gym class yesterday, then came home and played outside and had a picnic in the backyard. We picked Avery up from school and went for a bike ride. The look on Drew's face when he was riding his new bike with training wheels was priceless! Then, Avery started soccer last night. Most of the kids are Kindergartners from Stoner Prairie, which was fun! The best part of yesterday was that I actually felt like a NORMAL mom... all I've wanted for some time was just to live a normal life again. I feel like I'm getting there. :)

O.K., gotta run to PT. Will update more later!

xoxo
Kim

3 treatments to go!!! Yeah!

I haven't updated my blog (and never got around to starting that new one). I've been feeling very rough lately and haven't had the energy to update as much. I've been considering the day a "success" if I don't spend the whole day/night in bed!! Yesterday, I spent most of the day in bed and finally gave up at 7:00, took a benadryl, and went to bed for the night. Today is the best day I've had in awhile. I attibute a lot of it to seeing my acupuncturist this afternoon. She has really helped me in managing my side effects, especially the headaches. After I see her, they are gone for about a week! I have a lot of weakness in my legs and feel SO incredibly fatigued every day. And, the lovely flu-like symptoms are just so much fun... they typically hit me late afternoon- early evening. But, the GOOD news... only THREE treatments to go and then we're headed to Florida... Magic Kingdom, Epcot, Sea World, the SPA (just Todd and I, of course), the pool, and most importantly, lots of warm weather and relaxation! :) I'm not going to start my shots until I get back from our trip, so I'm SO looking forward to having the week off! The shots will be half of my current dosage, three times a week. I will do the shots before bed, so hopefully, I sleep through the side effects. I don't know what I will do being away from UW Hospital for a whole week! Since my surgery, in December, I have been at the doctor, for a follow-up appt., random doctor's visits, scans, lab work, physical therapy, radiation treatment, or chemo clinic, almost every single day!! I can't wait to wake up in the morning and NOT have to drive to the hospital!!! I promise that I will be spending some mornings bumming around in my pajamas with my coffee, for sure!

So, right now, my focus is on getting through these last 3 treatments and then time to CELEBRATE!!! :)

Kim

Update/ New blog

I am going to start a new blog on a website called Caring Bridge. You will be able to be notified each time I update the blog on that site. I will post the address here when I get it set up.

To give you a very brief update... my labs looked great on Friday. It seems that my body is tolerating this new dose better. So, hopefully, things will be smooth sailing the next two weeks. (We're planning to still go to Florida, just a couple days later than originally planned.) Side effects were not fun, but manageable... fever, body aches and chills. My headaches are GONE, thanks to the acpuncturist I've been seeing! YEAH! :)

O.K., I'm going to go enjoy the beautiful weather with the family, but wanted to give a quick update! :)

Kim

one last thing

I didn't post on Friday, but my liver functions were getting back to normal... one was back in the normal range and the other was still on the high side, but probably back to normal by today. He's not going to check my labs again until Friday. They also decided to leave the IV in... they will take it out and reinsert a new one every 2-3 days. They had to poke me three times today, which is really annoying and painful. They can only do IV's on my left arm (they can't do any needle pokes in my right arm due to having my lymph nodes removed). So, hopefully, my hands and arms won't be covered with bruises with now!! :)

Kim

Back on the train...

I started my treatment back up today. It still blows me away that I have to WAIT SO LONG! Today, I was there for 3 hours for a 20 minute infusion! But, the good news is that my side effects haven't been too bad today. I was worried that it was going to be like starting over after having a week off. I have a mild headache and generally feel a little achey in my joints. But, it's managable! He reduced my dosage by 1/3, so I'm hoping my body tolerates the rest of the treatment better this time around. I will keep you updated! :)

Kim

same old, same old...

No treatment again today... my liver functions are going down, but still not in the safe zone. Will go back on Friday to check them again. Needless to say, I feel very frustrated to miss an entire week of treatments and have to start over again. I will keep you updated...

Kim

update from Albertini

After I posted, I got a call from Dr. Albertini to discuss my liver function. He doubts that things will be in a safe zone for treatment by Wed. I will go in for my labs on Wed. and then, most likely, come back again on Friday, to recheck again. When we do resume treatment, he will cut the dosage back by a third. The current dosage is obivously just too toxic for my body.

So, now I'm looking at no treatment all week! This is bad because now we're starting to talk about how to make up that time... and the obvious option is to keep going when our trip to Florida is scheduled. I just want to be DONE! I don't want to sit and wait around for my numbers to get back to normal!!! I feel very discouraged and frustrated!

Kim

Set back...

When I went in today, I had labs done to recheck my levels. I was told that we need to hold off on my treatment for two days. My white blood cell count was back up, which was good. But, even without the treatment all weekend, my liver functions continued to go up and were higher than they were on Friday. I talked to the nurse about it and she said that Interferon is really hard on the liver and it is not at all uncommon to have to miss a treatment or two because your liver functions are up. She made it sound like this is pretty normal. It's still frustrating, though. Most likely, they will lower my dosage in the hopes that my body will better tolerate the Inteferon. There is nothing I can do to get my liver functions to return to normal... except make adjustments to the treatment.

So, for now, I am just going to try to enjoy having a couple days off and not worry too much about what the numbers say. I am also meeting with an Acupuncturist tomorrow to get some help in managing the side effects.

Kim

Another long day...

I was so looking forward to posting about how things continued to improve and that I was handling the side effects quite well. Yesterday, no headache, no body aches, no chills, or fever! Just tired, really! The only new thing is that the treatment is causing me to have this constant bad taste in my mouth and I'm having a lot of food aversions.

Well, today, I went in for my treatment and had my labs done. When I met with Dr. Albertini, he said my white blood cell count was low.... low enough that they almost didn't do my treatment today. They decided I was still in the safe zone and since I seemed to be feeling well (and I looked well!), they decided to go ahead and give me the treatment. Well, I ended up at UW for over 5 hours again today! Aargh!!! Then, when I got home, Dr. Albertini called and said my liver function was high, too! So, he's cut me back to regular tylenol. The hope is that I won't need to take any medication this weekend and all my levels will get back to normal by Monday. They will be rechecking my levels again on Monday. But, due to my white blood cell count, I'm more susceptible to illness and infection... and am not able to fight it off on my own. So, if I get a fever of 101, it's an automatic hospital stay with IV antibiotics. So, I will be staying home all weekend while Todd sanitizes our house! :)

On another interesting note, my doctors told me that a study was just released last week that studied the 1 month Inteferon course of treatment vs. the 1 month plus the year of Interferon injections. The study found that there was no significant difference in outcome for patients! What does this mean? It means that my doctors are looking very closely at this study to determine if there is any significant benefit to doing the Inteferon injections for a year. Dr. Albertini is in charge of reviewing and suggesting policy changes for his department. So, we'll see what happens. It might just turn out that I am done with treatment in 3 weeks!!!

Please send lots of immune-boosting vibes and prayers my way this weekend! I am so happy for two days off!!!! :)

Kim

Day 4: Things are getting better!

So, I am happy to say that things seem to be getting a bit easier every day! Yeah! I'm still dealing with the headaches, which is the hardest part. And, I still have the body aches and chills. But, they seem to come in waves now with periods of relief in between. I'm also tired after the treatments, but I've been able to get in some time to rest each day. But, the good news, is I don't feel like I am bedridden and I can get up and actually function... and be a mom! :)

I was SOOOO happy today... my treatment went smoothly and quickly (and they didn't even have to poke me 3 times to get the IV in like yesterday!). We were out of there in just over an hour! I can't tell you how much that boosted my spirits today. :) I am so happy tomorrow is my last day of treatment of the week... 3 more weeks to go! Fridays will be my long days because I have labs, wait for lab results, meet with Dr. Albertini, and then have my treatment. I will probably be there for at least 4 hours on Fridays.

So, it was a good morning and I hope I feel good for the rest of the day today!!! :) I'm SOOOO looking forward to enjoying every minute of my weekend!!!!!

xoxo
Kim

Day Two...

So, I will say that, overall, today has gone much better than yesterday! I was only there for about 2 1/2 hours today. The treatment hit me harder and faster today, though. It starts with a headache... I can feel my head start to throb during the infusion. Then, the body aches and chills start. By the time I left today, I hurt from the top of my head to my toes. The nurse commented today that Intferon was one of the hardest chemos (nice, huh?). It was difficult leaving the hospital today. I was in so much pain. But, I did talk to my doctors about finding ways to better manage the side effects. They wanted to give me narcotics to deal with the headaches and body aches, but I have such a bad reaction (nausea/vomiting) to narcotics that I don't want to use them. They told me I can start taking extra strength Tylenol and Aleve for the headaches. I took these when I got home and they helped tremendously! My pain wasn't totally alleviated, but I wasn't bedridden!!! I even had the energy to pick Avery up from school! My fever has been lower today, too (99-100). I think, as time goes on and I know how my body responds to the treatment, I will hopefully be able to take my medications and stay on top of the pain. The headaches are really the worst side effect so far. My mom found these awesome Migraine cooling strips that stick to your head and they have been my lifesaver. They instantly soothe my headache and last for 8 hours!!! I am SOOO happy someone invented these things! :)

Todd and my mom have been so supportive in helping me cope with all of this. And, of course, the loving and supportive messages from friends and family, too! I know I just need to get through each day and each week! I trick myself by saying, "I'm already half way through the first week tomorrow! Only 3 weeks to go after this one!" Despite the pain, I'm trying to stay positive. Of course, I worry most about how it affects the kids to see Mommy sick. They seem pretty resiliant and unconcerned so far. Avery was really itching to go somewhere after school today and my mom took the kids to Westgate to do some shopping, vist the fossil shop and eat dinner. (I had to call my Mom to let her know that the kids normally go to bed at 7:00!) Drew's 4th birthday is tomorrow and I'm hoping to have a better day tomorrow so we can celebrate his b-day (we had his party last weekend).

Please continue to send lots of positive, healing vibes and prayers our way! Love to all...

Kim

amazed...

Minutes after posting (even if you all hadn't read my message yet), my fever dropped to 99! :) So, no trip to the hospital for me... at least for now. Please continue to send lots of healing energy and prayers my way... and a restful, peaceful, fever-free sleep!

Kim

Need some prayers and positive energy!

So, today didn't go as well as I had hoped. First of all, I was there for 4 hours (due to computer problems in the pharmacy). I then got a really bad headache during the inteferon infusion that has lasted (and gotten worse) all afternoon and evening. I also have chills and body aches. The biggest issue is my fever... 102 (with tylenol). I talked to the on-call doctor and if the fever doesn't come down with a second dose of tylenol, I will need to head to the hospital. She's concerned about infection. So, I'm trying everything to bring my fever down to avoid the hospital. But, I wanted to hop on here to ask you send me all your prayers and positive, healing energy tonight! Amazingly, since I found out about the potential hospital trip, my headache has gotten better (does adrenalin help headaches? Hmmm...). I will try to update you as soon as possible.

love,
Kim

Gearing up...

So, tomorrow is the start of my interferon treatment. I'm feeling as ready as I'll ever be. I'm surprisingly not nervous and feeling positive and calm about things. In fact, I seem to be more focused on how I'm going to make the most of my time at UW for the next month! lol! I'm going to pack my "treatment goody bag" with a good book (I'm conflicted about bringing my inspiring, spirtual, healing books or a trashy romance novel!! I'm leaning towards the latter), a big bottle of water (I'm supposed to drink 10-16 glasses of water a day while undergoing treatment!), the Ipod (what do your think... Dar Williams or an 80's mix? I heard 'Take on Me' yesterday.), some tylenol (to take while I'm there to help with side effects) and some healthy snacks... or even just pack breakfast to eat while I'm there! :) I'll probably run out of time to do all the fun things I want to do!

I'm also being realistic about the side effects. The nurse gave me a book about interferon... they certainly don't make it sound like a vacation! But, I'm just going into it expecting to not feel too bad. If I expect to feel horrible, I probably will! So, I'll just deal with the side effects as they come. I'm going to hopefully meet with an acupuncturist this week. I wanted to start the treatment first so I knew what I was dealing with.

My skin is slowly starting to heal from radiation. If it wasn't for this darn rash I have developed all over my back, I would be quite comfortable! My chest is already starting to look much better.

This weekend was really nice to relax and just spend time with the family. We had Drew's 4th birthday party on Sat. at the Little Gym and he had a great time (was I glad we paid someone else to manage seven 4-year olds!). And, his face was priceless when he got his new bike from mommy and daddy. Other than that, we just had a relaxing, laid back weekend, which was exactly what I wanted!! My mom also came up and is spending the week with us to help out with the kids during my first week of treatment. Todd is planning on coming to my appts. with me this week and my mom will watch Drew. Depending on how I feel in future weeks, I may take some of you up on your offers to come with me to my appts.

O.K., so I will keep you updated this week on how I'm feeling! Please send lots of strength, prayers and good vibes to help me get through this!

love,
Kim

CAT scan

So, I had the CAT scan today to check that spot on my right lung and it came back normal. YEAH! I always love it when I get good news! :) (I was happy that I didn't have a ton of waiting today for my appts., too!) My past two CAT scans have both revealed that I apparently have a kidney stone just hanging out in my kidney. But, it's nothing we're going to do anything about since it's not causing any problems(first things first, right?).

I stopped down and talked to the Radiotherapy folks today to have them look at my skin. I have developed radiation-induced dermatitis. Basically, I have three patches that have become deep red, blotchy, and really itchy. Although they have told me that the radiation will continue to work for 1-2 weeks, I am noticing some slight improvements in some areas... the small blisters all over are clearing up, for example. The blistered skin on my neck is slowly but surely improving, but it's still the most painful area. I'm just very happy that the radiation is OVER (as of Tues.) and the healing can begin.

Inteferon starts on Monday. Everyone keeps preparing me for the worst, but I'm just staying positive and plan on just dealing with the side effects as they come. I have a freezer full of meals from all our wonderful friends and family, which is so awesome... thank you again!!!!

One day at a time...

love,
Kim

Moving forward...

Yesterday, I met with Dr. Albertini to discuss starting inteferon. I first had lab work (came back normal). I also had a chest x-ray. The chest x-ray revealed a small, subtle spot on my right lung. The doctors are not too concerned about it because it is so faint. It showed up on my front to back x-ray, but not on my side x-ray. When I got home yesterday, I called Dr. Albertini to remind him that I had a chest x-ray prior to my surgery. He called me back and said that he compared the two chest x-rays and there was no spot on my right lung two months ago. So, next week, I will have another CT scan to rule out anything on my lung.

So, we discussed the inteferon. I guess I will be getting a heavy duty dose, so the doctors are preparing me for the worst... basically a month of having a bad case of the flu and being exhausted. The treatments will last 40 minutes each day. And, then, I will have weekly labs and visits with Albertini to monitor how things are going. After getting the whole run down from a room full of doctors, I said, "O.K., so now tell me something POSITIVE!" The doctors are all about preparing for you for the worst, which is quite draining to sit there and listen to. Dr. Albertini said the positive was that I am doing the absolute best thing to prevent the cancer from coming back.

Radiation is almost done... only two treatments left! I'm experiencing a lot of discomfort. My skin is really red and raw. My skin is blistering in the creases of the skin on my neck, which is very uncomfortable and woke me up a lot last night. The radiation will continue working for a week after my treatment ends. My doctor said my skin might get worse before it gets better. So, I'm prepared to deal with the discomfort and inflammation for another week or so and then on to healing. :)

My treatment starts on Monday, March 2nd. So, now we begin preparing for that month... meals, childcare, etc.. It's so hard to know what to expect and how much help we will need. Todd is considering taking a little time off of work (maybe a few half days or something). My mom will also be staying with us the first week. I am also going to meet with an Acupunctuist to help manage the side effects... hopefully it will help!

So, that's the update on the next phase of my treatment. Please continue to keep our family in your thoughts and prayers!

Much love,
Kim

My own personal rollercoaster...

Man, my life is going through some ups and downs lately. Yesterday, I was having a great day and feeling really positive and happy. Then, as I was waiting in my car to pick Avery up from school, I was reading one of Deepak Chopra's books on healing. He started describing a man who had melanoma. His decription of melanoma and the prognosis for melanoma patients, even when treated to the maximum, was very grim and scary. In reading this, my heart started to race, my palms sweat, my stomach knot, etc... It brought all the fear that I experienced two months ago back to the forefront for me. I reminded myself that I am HEALED... they removed the cancer... my treatment is making sure it doesn't come back. I reminded myself of my confidence in my body and that my intuition tells me they got it all and it won't return. I will live a long and happy life! It really set me back, though, and I'm working my way through it.

Radiation is kicking my ass this week. 5 weeks of daily radiation... I guess it makes sense to be experiencing the side effects! I have the bad sunburn they told me I would get with small, itchy blisters and swelling. I am also very fatigued... I was happy to rest for about an hour and a half today when both kids were at school.

I saw my PT today and we both agreed that we need to take a break until my skin and tissue have some time to heal. We'll resume when radiation is over (next Tuesday!!!). The good news is that, even though I didn't see her for over a week, my range of motion has greatly improved. Get this, I'm in the NORMAL range!!! :) I still have a ways to go... a lot of tightness and pain. But, I'm just appreciating how far I've come and I'm hopeful to make a full recovery!

I realized today that I'm also having some transition anxiety. Even though I'm SO happy to be almost done with radiation, I'm scared to start the interferon. But, on the other hand, I'm glad for the change of pace... new clinic, new people, etc... to break up the daily monotony! The interferon appts. will be longer than radiation. The "chemo clinic" is busy, too... lots of people getting their various forms of cancer treatment. And, of course, I worry about how my body will handle the interferon. I'm hoping popping a few tyelenol will do the trick! ;)

And, then there is the biggest fear... (and it takes a lot for me to say/write this) What if all of this doesn't work and the cancer returns!!! I do everything in my power to NOT GO THERE and focus on the present moment... the one where my body is strong... a healthy body free of cancer and disease! I'm choosing to plant healthy seeds, not toxic ones. But, the mind sure is a powerful thing!!

This week, my focus is going to be on getting lots of rest and taking care of my body. And, continuing to focus all my energy on things that are positive, loving, and healing!

Kim

Shifting to a brighter perspective

Last week was a rough week for me. In the beginning of the week, I felt frustrated, emotional, and burnt out. Then, on Thursday, I got the stomach flu! I was too sick to go to my radiation appt., so they will tack on another treatment at the end.

I realized that I needed to release and deal with some of my emotions about this whole process... grieve my pain (physical and emotional), my loss of control and freedom, my fears, etc.. I'm in a constant state of awareness of what is going on with my body and sometimes I just want to not notice or care and live my life "normally". So, I let myself go there... "lean into the sharp points" as Pema Chodron would say. Instead of hiding, escaping, ignoring, or covering up what I was thinking/feeling, I jumped in and dealt with it. I think it's slightly ironic that, in the midst of dealing with all of it, I physically got sick (coincidence?). Having the stomach flu (with aches, chills, etc..) also gave me a taste of what the inteferon may feel like, especially initially. (They have told me that I will feel like I have a mild-moderate case of the flu.) Hopefully, I will be pleasantly surprised and have very mild symptoms.



By Friday, I was feeling physically well again and felt a shift back to a more positive attitude. This weekend was a great time for me to rest and really appreciate my family. Todd is really an amazing partner. Despite the stress of working and parenting (and doing a lot of extras, like laundry, making lunches for the kids, grcoery shopping, etc..), his love and support has been unconditional and unwavering. He is always striving to do what's best for the kids and I. It's easy to overlook and take it for granted, but this weekend, I was very aware of how lucky I am. (And, yes, we had a great Valentines Day!)

And, of course, my kids are amazing. They keep me laughing and overflowing with love... and occasionally pulling my hair out! But, I am so happy to have them in my life. Their beautiful faces are very good medicine/therapy for me!

As for the boring details... my skin is red (although not too painful) and I have developed some small, itchy blisters. I was not able to make it to PT all week due to scheduling conflicts and being sick on Thurs. But, I have still noticed increased range of motion. I think after the radiation, when the tissue has a chance to heal and not be so inflamed, I will see even more progress.

On another note, Todd and I are going to see Deepak Chopra speak in Madison on Feb. 23rd. Todd and I both have really gotten into Deepak's work regarding the mind/body connection in healing. He talks a lot about healing from cancer. In his book, Quantum Healing, he describes that when people feel strong and courageous, their body actually makes interferon, which fights off cancer cells! Deepak has been very instrumental in bringing awareness to the benefits of combining eastern healing practices (such as Ayurveda) with western medicine. He believes they both have a place in the healing process.

Thank you, thank you, thank you for all your continued love and support!

Kim

rough day

It's Monday and I started the day with a good cry to Todd. I'm feeling frustrated and burnt out. I don't want to go to radiation today.... I don't want to drive there, park, walk to the clinic, lay on the table, lather up with balm, etc... I want to wear a bra again. I don't feel like this weekend gave me the time to recover. My skin is red and kind of bumpy and I developed some small blisters. I'm having pain radiating down my arm and my muscles/tissues are sore and tight. My breast is still sore and swollen. And, I don't want to feel tired this week!!

I'm just feeling sick of it today! Two more weeks of radiation... and then on to the 4 weeks of daily interferon at UW, which is going to be harder than this. I need to muster up some positive energy, but today I think I just get through the day.

On another note, there is a dad I know from New Morning (Drew's preschool) who is having a craniotomy to operate on a brain tumor. He has two beautiful daughters and a wonderful wife. Please keep him in your thoughts and prayers this week. (I believe his surgery is on Wednesday.)

Kim

Half way there!

So, yesterday was my half-way point with radiation... day 14 out of 28 treatments. My doctor told me today I was a "boring case"... in a good way, of course! :) This week is going very, very well. The past two weeks, I have been feeling fatigued, especially by Thurs. and Fri. But, my energy level has been great this week! (It helps that my whole family is healthy again!) I've also been going to bed earlier, too.

I've been having some discomfort and swelling in my right breast, which I guess is normal. My skin has also been getting progressively redder (and itchier). An herbalist (Alla Shapiro) I know generously offered to make me a balm to use after radiation. She made the balm for her mom who had radiation for breast cancer. The balm is amazing! My skin is noticeably less red and doesn't itch at all. It also feels and smells delicious! (If you're in need of creams or balms, let me know and I'll give you her contact info.)

Physical therapy continues to go very well. I'm amazed at the progression I've made with my PT... even in the course of a half hour! The pain is still excruciating, but the results make it worth it! Each time I see her, I experience a dramatic improvement in my range of motion.

On Friday, I'm having coffee with my new friend, Mary... who is on the same radiation schedule as me. It will be nice to chat and share our experiences with each other.

Thanks again for all the love and support. I'll keep you updated....

xoxo
Kim

Moving along...

One thing that has bothered me about my blog is the lack of depth... I've shared the logistics, the treatment regimens, what my doctors have told me, etc... But, there is so much under the surface stuff that I have not shared. Probably for a good reason... it's difficult to put it into words!

Through this process, many people have commented to me about my "strength" and positive attitude. Many people have admitted that they don't think they could handle the situation if they were in my shoes.... and some have admitted to wishing for a similar "wake up call" (without the cancer part, of course!). Of course, I told them that we all have innate strength and wisdom! At my very core, I believe that a positive attitude and love heals the body. I believe negativity and depression hurts the body. The choice to incorporate all that is positive, loving, and healing is such an obvious choice on so many levels! I also believe that living my life in this way helps pave the way for all the blessings that pour into my life.

One part of my personal "medicine" is smiling at everyone I see when I am at UW Hospital (and elsewhere!). Sharing this love and light helps heal my soul and my body... and I believe it heals others, too. I believe that people have a very deep craving to feel connected with others, but for some reason, they don't do anything about it. We all have something to share... wisdom, life experiences, love, or just a smile! (Imagine if everyone you walked by smiled at you!) The other day, I walked by a woman who was morbidly obese and in a wheelchair. I looked right into her eyes and smiled at her. She looked at me with a look of obvious suprise and gave me a beautiful smile back. And, of course, I chat with everyone. I've found that having a warm, caring, and positive attitude is contagious. I have many nice conversations with people each day I go in for my treatment. I had a therapist say to me yesterday, "Don't you feel scared about what is going to happen next?" (!?!) I was more than puzzled by this statement and asked her to clarify. She said something to the effect of, "I don't know, I guess if I had cancer and was going through the treatments, I would always be worried about what was going to happen next with my treatments (side effects), worrying about my next treatment, or if the cancer would come back." I looked at her and said, "I don't worry about those things at all. I trust my body and I know that I am already healed from the cancer. I'm just making sure it doesn't come back." I left kind of shocked that she, the medical professional who is adminstering the radiation treatment, had this kind of attitude and that she was so honest with me. I think she sensed that I didn't feel that way and wanted to know my "trick".

It turns out that I have a very strong connection with my physical therapist. We have a great partnership. I saw her today and, for some reason, I was just in a different state of mind when I got there today. As she was massaging the adhesions and tissue, I could feel the tears coming and I started to cry. She stopped and said, "It's O.K. to cry." She knew that I wasn't crying from the pain (although I think the pain gave me an outlet to release my emotions) and she gave me a safe place to release that emotional pain. She opened up to me that she lost her husband and soulmate when she was 31 years old. She believed very strongly in releasing that emotion and invited me to feel comfortable doing it with her any time I needed to. She is also giving me an outlet to feel in control. With physical therapy, I am able to see and feel the positive results. The pain is excruitating, but it reminds me of my strength to get through anything. Keeping a positive attitude and mustering up all my strength through this ordeal, doesn't mean it doesn't sometimes feel overwhelming and frustrating and tiring.

I hope to be able to find the time to share my story as much as possible. It's been difficult lately.... both kids have been sick and I have been so tired. I'm hoping to get some rest today while the kids are at school. Sharing with you through this blog is therapeutic for me, so I hope to do it more often.

Much love,
Kim

First week of radiation/ Physical therapy

So, I made it through my first week and a half of radiation... 4 more weeks to go. I've found that the radiation really wipes me out. I've had to lay down and rest every day. The past two days, I have also had some tenderness/inflamation on that side, which I guess is normal. But, it's been pretty uncomfortable. My skin looked red after my treatment the past couple days, too. So, I'm being vigilant about applying cream to the area to keep it protected. I'm just glad my body has a couple days off to rest and recuperate.

When I went to my physical therapy yesterday, I told her that I felt very frustrated by my lack of progress. It seems that no matter how much stretching I do, my range of motion is the same. I was also having a lot of tightness in my shoulder, back, down my arm, and down to my ribs. It seemed that things were getting worse, rather than better. The PT I met with yesterday was someone new. When I layed down on the table, she could immediately see that things weren't looking good. She ended up doing some really, really deep massage of the area... it hurt like HELL! I had tears in my eyes and felt nauseous. She actually was able to loosen up a lot of the scar adhesions, which helped tremendously with my range of motion. When I walked in, my range of motion (lifting my arm outwards away from my body) was 90 degrees... when I left it was 135 degrees!!! I've noticed a dramatic difference in that area today! Needless to say, I've switched all my appointments to her. She also gave me some new exercises to do at home, too.

O.K., kids are calling! I just wanted to post a quick update!

Kim

Update on interferon

I had my second radiation treatment this morning... it went much quicker than yesterday. I think I've finally figured out, after numerous appts., how to get to the right place! :) The clinic is under construction, so it is totally a maze trying to find my way around.

Afterwards, I met with Dr. Albertini to discuss the interferon treatment. We have decided to wait to do the inteferon until after the radiation. He felt pretty strongly that, in my case, the risks outweigh the benefits (my convenience being really the only benefit). Some of the risks include increased risk of radiation toxicity, lymphedema in my arm, and increased fatigue and flu-like symptoms. Also, if a problem does arise with either treatment, it would be more difficult to manage because we would have two courses of treatments going on at the same time. He also shared his concern that, as a parent of young children, both treatments may be too taxing on my body and I won't be able to manage the side effects as well. He also told me that he led a national clinical trial with a team of doctors, studying the effects of radiation and interferon treatments and that the team concluded that, except in some cases of advanced, active cancer, the risks often outweighed the benefits... I think this guy actually knows what he's talking about! So, I'm going to go with him on this one! :)

So, if everything goes as planned, I will start the interferon at the end of February. The treatment should be finished less than a week before we are supposed to head to Florida. Also, yesterday Charter announced that Todd was awarded a trip to a five-start resort in Mexico the first week in March. Obviously, we won't be able to make the trip, which is a big bummer. But, we'll hopefully be planning another trip later in the year.

I'm definitely feeling pretty fatigued the past two days... not sure if it's from the radiation or just running around so much this week... or school being cancelled for the past two days and having two energetic kids!!! :) I'm looking forward to a relaxing weekend where I can catch up on some much need rest!

Kim

First radiation treatment

I went in today for my first radiation treatment. It went fine. Honestly, driving to UW Hospital, parking, and getting to the clinic is the biggest pain of it all (especially on such a bitter cold day)! (Although, I consider myself lucky that I live in town! I know many people have to drive from far away for their treatment.) Typically, side effects (feels like a bad sunburn in the area) don't show up until about 2 weeks in. I have to lather the area with cream to keep the area moisturized... the radiation basically stops your body's ability to make oil and the skin tissue gets damaged. Otherwise, the treatment was pretty uneventful... lay on a table, hold some bars above my head, and lay still. The tricky part is that that I have to lay in the exact same position every treatment, so there is a lot of tweeking to get my body in just the right position. I was happy when the tech offered to put on a little Sheryl Crow! Music makes such a big difference in my mood! :)

I'm anxious for my appt. tomorrow to see when I will start the Inteferon... bring it on!!!

Kim

lotsahelpinghands.com

If you are interested in helping with meals or other "tasks" (none right now, but maybe down the road), please check out the website my wonderful sister started to help manage and organize days/times.
http://www.lotsahelpinghands.com/c/610221/

Kim

Starting treatment

Hello everyone-
It's been a little overwhelming and difficult for me to keep everyone updated on the what's going on with my treatment plan. I seem to just be running all over the place these days. I've decided to start this blog as a way to update you all.

I met with the Radiation Oncologist on Monday and had my "planning" CT scan this morning. This scan gives them a way to map out the area to be treated (I even got 4 permanent tatoos!). I will start radiation therapy this Thursday. This week has been frustrating because I found out that I will need daily radiation treatment for 5 1/2 weeks. But, the lower dose of radiation spread out over a longer time period will reduce the likelihood of the cancer coming back by 95%! My melanoma Oncologist wants to start the daily interferon treatment (which is another 4 weeks) AFTER the radiation is over. This means 10 weeks of going to UW Hosptial every day for treatment. After that, I will do the interferon treatment at home for the next year. My radiation Oncologist seems to think that we can do the radiation and the interferon treatments at the same time. I meet with my Oncologist on Friday and I plan on requesting that we do them at the same time, if possible. I also left a message with his nurse today. I'd rather feel like crap for 5 1/2 weeks then prolong the process for twice as long!

I've also started physical therapy to help get my range of motion back in my arm. The therapist is also helping massage the scar tissue, which helps with the tightness I feel in that area. Of course, now that my treatment is starting, scheduling these PT appts. is going to be difficult, especially since it's at a different clinic.

Emotionally, I'm doing O.K. I'm feeling a bit stressed and overwhelmed this week. I'm anxious to just get things moving forward. I'm also concerned that stretching the treatment out is going to make us have to postpone our trip to Disney World the first week of April... Avery has been very excited to spend her 6th birthday (4/9) at Disney World and have breakfast with the princesses. It will be very sad if we have to tell her we won't be able to go over her birthday. But, of course, I have to be concerned about my health first right now. I just don't want this treatment to dominate our life, which this week, with so many appts., it seems to be doing. Once my appts. are all scheduled and I have childcare set up for Drew, I think we'll get into a routine and I'll feel more at ease.

I continue to feel incredibly blessed and grateful for the love and support we continue to receive. We still have people bringing us meals... we have about a weeks worth of frozen meals in our chest freezer! If you do bring us a meal, it is so helpful to me if you can package it in a disposable container (freezer bags, disposable tupperware, etc..). I have a counter full of dishes and pans and I'm trying to figure out how to get them back to people! :) Especially, frozen meals... I feel bad that I have some glass dishes in my freezer! Please know that we are so grateful for the nourishing meals you have brought us! We've also received support in other ways... cards, beads for a healing necklace, flowers, a year's worth of monthly fruit delivery (thanks Shaws and Rappas!), and lots of phone calls and e-mails giving us lots of love and support. We've even received money from some wonderful friends and family, which helped contribute to our new Vitamix juicer (a great way to make fruit/veggie smoothies!). I cannot put into words how much your support means to us!!!

I will continue to provide updates when I can. Feel free to e-mail me at schafferk@charter.net, too! :)

Much love,
Kim