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It's me - Joanne - attempting to post a blog entry. I am definitely not up to speed and my brain seems to be sluggish - these are all side-effects of the chemo I am told. First, I want to thank everyone for your entries - sorry I haven't been able to respond - this is my first time at a computer since the beginning of April. I didn't have computer access at Youville. I am overwhelmed, supplied, carried, and sustained by your prayers. I am getting anxious about the next round of chemo (june 13) and while I know that I only have today and grace for today, that mind of mine keeps looking around corners and worrying about the chemo. So pray for my anxiety and that of my family. Being home brings home the real situation and it can and is stressful for everyone. Keep praying for that next round of chemo - that it hits the target and doesn't completely knock me down.

The big news is that when I saw Dr. Berkowitz yesterday he thought I didn't need the wound vac anymore and could move to wet to dry dressings. So I am off the wound vac which is great!!!! However being off this device cuts down the amount of visits from the VNA and requires that we changes the dressing (YIKES!) However I am not attached to a machine anymore and the wound is healing well. Please pray for my courage - I have not looked at the wound yet - and don't really want to see it if at all possible.

I responded well to the chemo the first round - the doctor said that right before surgery my CA-125 level was 306, and then before the 2nd round of chemo it was 36 - which is low. This is very encouraging.
I was at Dana Farber yesterday for 7 hours. My first big outing. It was exhausting. Much of those 7 hours was spent in the waiting room. I think we had about 45 minutes of office visit time in that whole 7 hours! The Lord is definitely teaching us how to lay hold of Him as our patience. For Him, one day is as a thousand years. It almost felt like that yesterday. But I did enjoy resting in Him. Unfortunately, Paul had to take the entire day off (something he wasn't expecting to do) and to have to wait and accomplish little was stressful for him. I am thankful he was with me though.
I have an appointment for a wig fitting for Monday. I had hoped to get one for Andrew's graduation but I have some turbans that will do.
I'm going to go back to bed for a bit - it seems that blogging takes more energy than I realized! Much love to all of you - Joanne

Nutrition and Immune System

Over their past two visits with the visiting nurses, we have been developing a regular routine for home care.
Today we will visit the Nutritionist at Dana Farber and tomorrow the Oncologist.
Please pray for a good nutrition plan for eating and supplements that will help: restore Joanne's GI system to stabilize her digestion and the function of her bowels, strengthen her nervous system and help her to take in a healthy amount of protein. The nutrition plan will need to deal with any interactions between the drugs and nutrients so that the chemo treatments are effective.
Blood will be tested on Wednesday to see what the bio marker CA 125 shows after two rounds of chemotherapy along with other blood counts. The white blood cell level usually falls to its lowest level between days 10 and 15 following each chemo treatment. It is important to pray for Joanne's immune system during this time. The family along with Joanne and any visitors will have to exercise care to minimize the chance of her getting an infection or picking up any germs since her system is compromised during this period. Pray for increased protection as her immune system gets restored.
Also pray also for her metabolism. Her energy level has been lowered by the wound mending and chemo but has been even further complicated by the disruption in her routine of taking thyroid medicine at the same level of effectiveness as in the past.

Home

Being home has provided an environment to get better sleep at night and begin to eat food more consistently. Although at times it is more peaceful and Joanne has had some positive moments, there is also a bit of stress that comes with family life and adjusting to new routines.
The visiting nurses have visited twice. They have completed an assessment of Joanne's home needs; changed the wound dressing; helped set up a schedule for taking meds including training us in giving shots. They are encouraging Joanne to drink plenty of fluids and walk as much as possible.

Joanne, Home at last!

After eight weeks of hospitals, Joanne finally came home today being discharged from Youville Hospital.
Some women from the church helped us further prepare and clean the house. We finished gathering the medical supplies and equipment that are needed. We also got all of the perscriptions filled. Tomorrow, a visitng nurse will do an assessment of Joanne's condition and needs and we will set up a longer term schedule involving wound dressing changes and some physical and occupational therapy.
We are grateful for the Lord's faithfulness in getting us to this place.

Relief, home in sight

After four very long days of being exhausted with nausea, diarrhea, acid reflux, and no appetite, Joanne began to show signs of a rebound from the chemo treatment today. She also had experienced pain in her abdomen, joints, and numbness in her toes. Most of these side effects have subsided and we are preparing for Joanne to come home on Thursday.
Arrangements for home care and some of the equipment including the wound vac are being made. One of the nurses trained Paul to give a shot that Joanne will need to receive twice daily.
Once home, it will be helpful during the work hours to have some someone with Joanne between 10 to 12 and 3 to 6 when family will not be around much. Please contact Missy if you would like to come during these hours.

Weekend at Youville

Friday through today has been a tough stretch for Joanne. She has not been able to eat much of anything, feeling quite sick and exhausted following the chemo treatment. There have been a number of moments of tears.
She has been encouraged along the way by some caring visits including one with singing by a few members of the church who brought a guitar Saturday. Visits at the beginning of this coming week probably should be short with some expectation that Joanne will be tired and continue to have a low level of energy.
By the end of this week we hope to make the transition home. We need to make a good connection with a visiting nurse agency, finish obtaining some equipment, and complete our preparation of the house.

Prayer related to chemotherapy/ nutrition

Like the metabolic process of transformation spiritually, there are two aspects of chemotherapy with nutrition: elimination of what is bad and building up that which is healthy. Along these lines there are some specific items to pray for:

Eliminating cancerous tumors and cells-

• Systematic, universal destruction and removal of all rogue, mutant carcinogenic cells.
• No further spreading of cancer cells and no development of any new forms of cancer.
• A recovery of normal programmed cell death (PCD) to function and natural killer cells to attack cancer cells

Healing and building up of healthy tissue and processes-

• Healing o the hypothalmic-pituitary-ovarian axis.
• Normal production and balance of all hormones including estrogen
• A strengthened immune system.
• Normal levels of hemopoietic growth factor and normal production of lymphocytes.
• Healing of damage to the intestines and recovery of their function.

Rest and recovery

Joanne was exhausted most of the day on Friday following round 2 of the chemotherapy. The medications involved before chemo treatments can sometimes cause a temporary "high" that is followed by a low or depression.

A resident beautician was able to cut Joanne's hair to a short length to help manage the process of hair loss.

Some of the staff expressed some optimism about Joanne getting off the daily TPN IV feedings early next week. Joanne has been able to climb about 14 stairs as part of her physical therapy, but will have to rebuild her strength in the next few days before continuing.

Round 2 of Chemotherapy

After arriving at Dana Farber, Joanne's vital signs were taken and she saw Dr. Berlin, her oncologist. We arrived at the the 10th floor for the chemo infusion after 2 PM.

After some preliminary medications and other solutions, Joanne began to receive her two chemo drugs. She was treated for a slight rash. She also became quite hot as the first drug Taxol was administered over a three hour period. The nurse assigned to Joanne was very helpful and the level of anxiety seemed to be blanketed with some amount of overshadowing peace.

The process was completed about 7:45 PM and Joanne returned to Youville where her wound was repacked and the vacuum reconnected.

Chemotherapy rounds are spaced about three weeks apart with the white blood cell count hitting a low point between the 10th to 15th day. That is the time when the immune system is at its lowest.

We set up a future appointment to check blood counts, see a nutritionist, and for round 3. We also picked up a few scarfs at the boutique.

Prayer at the hospital chapel

Wednesday evening Joanne had her IV needle reconnected to the port that had been previously set up. This was painful for a moment, but the nurse was skilled and succeeded the first time.
Afterwards we had a time of prayer with some of the elders from the church. In the prayer, there was a mutual identification between Joanne and the Body through the brothers. There was a sense of a strengthening and covering as Joanne's situation was presented to the Lord. We experienced the Lord exercising His authority through His Body. Joanne prayed for a continuing openness throughout this experience to cooperate with the Lord for His purpose. We also prayed for Joanne's roommate and others who we contact in the hospital that His word would go forth and His testimony expressed.

Filled with thanksgiving

Words can not express all of our thanks for:

Bright flowers to comfort and cheer
Visits supplying grace and peace
Cherishing meals prepared in love
Kind deeds from giving hearts
Words of hope and supporting faith
Sweet incense from many prayers

Approaching Round 2

Joanne's wound repacking went smoothly on Monday and the tissue continues to look healthy as the incision steadily closes.
We are trying to prepare an alternative drink for Joanne besides Ensure so that she can increase her daily calorie intake. She needs to reach about 2,000 calories a day before she can taper off of the TPN. Eating is so important to life.
The case manager indicated that depending on how Joanne does with her 2nd round of chemotherapy this Thursday, she may be able to be released to come home the following Thursday. This would be a tremendous encouragement to be home after being in three different hospitals since the first week of April.
As you can imagine, there is no small amount of apprehension as we get closer to the 2nd round of chemotherapy tomorrow.
This evening, we hope to take time for prayer with some of the elders of the church.
In all things, the Lord continues to reveal Himself in all His wonderful dimensions- He is the Resurrection and the Life, our daily and sufficient supply.

Weekend update

This past weekend Joanne continued to eat small portions of hospital food and some food that has been brought in for her. She is limited to foods that are relatively easy to digest. We appreciate all of those who have come to help her get food from the nursing station refrigerator and those who have offered to come during some of the lunch and dinner hours next week.
Hair loss has begun and this is a challenging adjustment. We were able to pick up a few simple turban hats and someone provided a few more which have come in handy.
Difficult moments come from time to time when Joanne becomes aware of her limitation in being able to take an active role in parenting the children and participate in their events.
She has also been a little distressed when visiting hours at night have been cut short by one staff member. This is the time when she needs extra help while hooked up to the IV to move around and she can feel quite lonely as she begins a long night. Her doctor, case manager, and fellow room patient have approved more flexible hours for visitation by the family, but this is not consistently allowed. Please pray that peace would abound as all things are headed up in Him and His grace would be multiplied according to the riches of His glory.
We have become aware of our need to buy oil through these circumstances so our vessel will be filled with the Spirit. We are also very thankful for all of the continued kindnesses manifest through the members of the Body of Christ, family, and friends.

Dr. Berkowitz follow-up visit

The initial stage of repacking the wound was accomplished in a short time with limited pain late this morning. The new foam used for packing the wound came out with little adhesion.
This afternoon, we saw Dr. Berkowitz at Dana-Farber and he examined the wound. He was very encouraged at the rate of progress even with chemotherapy underway. He commented that the tissue looked healthy and the wound looked half the size in depth since the original surgery. He encouraged Mom to continue with the current wound treatment approach involving the vacuum. He indicated that the primary focus is the elimination of the cancerous tumors however. A key measure will be the CA125 blood test which will be taken before and after the next round of chemo next week.
Recovering eating, bowel function, and physical therapy continue to be important priorities as Mom continues at Youville.

Quiet Advance

The past two days have been quiet, filled with physical therapy including some walks and working on stairs. Mom's bowels oscillate between being very uncooperative and sometimes working more normally. She needs to gain stability in this area if she is going to become confident to eat more solid foods.
Tomorrow is another day for repacking her wound and a visit to Dr. Berkowitz to review her progress.
The nights are somewhat lonely and difficult with the feeding IV limiting movement. Pray that His Word and His presence would swallow up all the anxieties and enable healing rest.

Answered Prayer

JoJi, Joanne's nurse was accompanied by Dr. Chi and a hospital worker, Marsha in repacking her wound. The process of removing the old sponge material and inserting new non-adhering sponge went quickly and the pain was well managed. We are grateful for everyone's prayers and the Lord covering this procedure and providing Joanne grace.
Joanne has started to eat small amounts of food- chicken soup, mashed potatoes, etc. Once she reaches a certain calorie intake level the TPN feeding can be reduced and eventually stopped.

Meeting Dr. Chi and a walk outside

Joanne met Dr. Chi today who had returned from vacation. The hospital will begin to measure calories from other food sources over the next three days to see when the TPN feeding IV can slowly be discontinued. She will be evaluating Mom's condition over the next week.
Joanne had a chance to walk outside today and feel the sun. She was thankful for the fresh spring air and to see the blossoms on the trees.
Pray for much grace during the repacking of her wound tomorrow which has been painful as the sponge material is removed and the vacuum tube is reinserted.

Non-stick sponges

A nurse told Mom this morning than they found some non-stick sponges they could possibly use for her wound. This was quite encouraging to Mom, meaning that after Tuesday the wound changes would be substantially less painful.

Meanwhile the nurses have been encouraging Mom to administer her own shots. For someone who dislikes needles, this morning's self-injection took 20 minutes. Mom is working on bringing the time down - but for her the thought is more than a little daunting.

Also, the irritation in Mom's skin has gone away. She stopped taking morphine based oxycontin, which seems to have been the source of the skin reaction.

Meanwhile she continues to improve. Please pray that she will get adequate exercise each day.

Saturday at Youville

Mom took some Benadril last night for a rash she has been having. The rash causes a lot of itchiness and is very uncomfortable. On a positive note, the Benadril helped her sleep very well. In the morning she saw the occupational therapist and was able to do 1.5 laps around the hospital floor. Most of the remainder of the afternoon Mom was anticipating the change of her incision sponges. Just before this she enjoyed another encouraging visit from her sister and brother-in-law. Changing the wound was the most painful it has ever been. Mom felt like they were tearing her skin and started crying, struggling to keep from screaming. Apparently one of the sponge pieces bonded so strongly with the side of her wound making its removal excruciatingly painful. The pain was so bad that they had to stop the procedure to give her some Dilaudid (a morphine substitute). Furthermore, there was some confusion on how to operate the wound VAC machine - the nurse wasn't familiar with it. Overall the procedure took 1.5 to 2 hours. During this time the physical therapist came in to work with Mom. This session was cancelled, however, because of the duration of the procedure, causing Mom to lose another opportunity to exercise. This traumatizing experience created a lot of anxiety for Mom, which combined with the Dilaudid caused Mom to sob a lot about the future week - changing the wound on Tuesday and even worse on Friday with Dr. Berkowitz, who just pulls the sponges out without pain medication or patient consideration. It was hard for Mom to get her mind off this. Also, the nurse told Mom that there was some unhealthy tissue in the wound, which would have to be cut out. Mom is exhausted from all these complications and discomforting situations. She said she felt as though she is being hit by waves that just get larger and larger and just when you think you are through one, the next one hits. Please pray that she would find rest for her soul.

Andrew and Dad visited her in the evening. She was really happy to see Andrew, who doesn't get to visit that often.

Another source of concern is that I be will leaving for California on Sunday afternoon. Mom is afraid of being alone during these difficult procedures. In many ways she still needs a lot of help. The nurses here often don't seem to remember what medications they have given Mom, and several times Mom has corrected them and is usually right when they consult the record.

Stephen Juraschek

Visiting Joanne

Visiting hours at Youville, Cambridge are 2:00 - 8:00p.m. Joanne is working with a physical therapist and an occupational therapist and is still in pain from her incision so she tires easily. If you come to visit her please keep your visits short, 10-15 minutes. If Joanne is sleeping please do not wake her but instead you may write a note to her in a book provided in her room. She is in a semi-private room and does not enjoy the space or privacy she had at BWH - cramped quarters with a roommate - so please no more than 2 visitors at a time.

Joanne is so encouraged by your comments in the blog and by visitors reading the word of God and praying with her.

The grace of the Lord Jesus Christ be with you all. 2nd Thes. 3:18

Friday at Youville

The night was once again a little rocky. Rather than reduce Mom's stool softener as discussed by one of the doctors, one of the nurses tried to administer an increased dosage, which given the way Mom's digestive track was acting, was a little disconcerting. Fortunately, Mom was aware of the error and able to refuse the excess drugs. This did not prevent her from having the same digestive issue as the night before. The next morning she still managed to eat toast and scrambled eggs with ketchup (something she has an unusual craving for). When I arrived, she met with a substitute physical therapist who cleared me to walk with her on the weekends as well as did some exercises with her after a walk in the hall. The exercises unfortunately triggered the same digestive problem she had been having making her feel clammy and faint after the episode not to mention ending her exercise for the morning. Mom then retired to her bed where she made a feeble attempt to eat lunch and refused a visit with the occupational therapist, having recurrent pain in her abdomen. Shortly after, the geriatric doctor visited Mom and promised to sort out the confusion over the medication last night as well as said she could postpone the change of her would sponges until Saturday. Mom was quite happy about this change of schedule. Later, her sister, Terri, and brother-in-law, Billy, visited while she was having dinner. She was quite happy to see them.

It seems that for Mom's recovery one of the most critical items is exercise. Both her rest and exercise have been greatly inhibited by her digestive problem of eliminating too quickly. We should pray that her digestive track would function more normally, she could get adequate rest tonight, and that she would exercise on a regular basis.

Stephen

Youville Thursday Morning and Afternoon

Mom had some more trouble sleeping last night. It seems as though the late night gift-snack of humus and tabouli brought to Mom by Anna and Dad did not sit well with Mom's restructured digestive tract; although Mom did say that it was delicious. Fortunately, in the morning I arrived after most of the drama, which was a relief to Mom. Today was quite productive in multiple ways. She was able to meet two physicians! This was the first time she spoke with any doctors at Youville. The first doctor, Dr. Sudoukis (sp?) spent a lot of time listening to Mom explain her concerns, the experiences she past through the last several weeks, etc. Her bedside manner was excellent. Then Mom had the opportunity to walk with the occupational therapist, Barbara, who also showed her some unique devices for getting dress and picking up objects without using her abdominal muscles. Barbara also promised to get Mom cleared to walk with family members, which will greatly increase the amount of walking she is able to do throughout the day. Afterwards Mom saw 4th year ostheopathic medical student named Jessica, who is doing a rotation at Youville. Later, a geriatric doctor and professor at Harvard Medical School came to see Mom. He was quite caring and considerate. He explained the importance of a health proxy and procedural waivers and listened to Mom's concerns about her present digestive elimination discomforts.

On another note, Mom was able to smell spring today. When Anna visited she opened the window to Mom's room quite wide (even a little too wide - items in the room started blowing away). A nice breeze aired the room out - it was quite exhilarating.

Mom seems significantly less sedated and a lot stronger on her feet. She has been complaining substantially less about pain, which are positive signs of her recovery from surgery. Also, she ate a whole egg this morning and has been eating incrementally more at each meal.

Stephen

Wednesday at Youville

Mom continued to rest most of the day at Youville. Some nurses changed the sponges in her wound, which turned out to be a two hour ordeal. Apparently one of the nurses was learning the procedure from the other nurse and it was more complicated than either of them initially expected. After this, Mom walked a little with both Barbara, the occupational therapist, and Hilda, the physical therapist. She is also beginning to eat some soft food, which will allow her to stop TPN if her caloric intake is high enough.

Stephen

Trip to Dana Farber

This morning Mom discovered that Dr. Berkowitz wanted to see her for a post-operative examination. This necessitated a trip to Dana Farber. Mom was moved onto a stretcher and Stephen joined her on a bumpy trip through Boston via an ambulance. Dr. Berkowitz removed the wound sponges and examined the incision, noting that it looked fine. He said he would like to check it again on Friday, May 11th to confirm that it was still "good and clean" before the next chemotherapy treatment. Mom was not expecting this procedure and because I was located on the other side of the room she had no hand to hold. She did great, however, even with no additional analgesic. Dr. Berkowitz left a complete repacking of the wound for the staff at Youville.

Stephen

Tuesday at Youville

This morning began Mom's first full day at Youville. In the morning she had trouble finding people to give her pain medication. Mom said they seem a little slow. After 11:15 am occupational therapist, Barbara, came in to see Mom. She wanted to assess how well Mom could do certain tasks like get dressed, go to the restroom, etc. After this Mom spoke to her nurse about pain. The staff member gave her some oxycontin. Right after (at about 12), a physical therapist visited and took Mom for a walk. She also taught Mom some techniques for standing up and sitting down on her own. Soon after the oxycontin started working and Mom became very drowsy. Mom continued sleeping for most of the day. Although she did not feel any pain, she felt over medicated. She spoke with the nurse about this problem and they will work to find a "happy medium" between no pain and complete sedation. Later in the day, a sister named Tracy Chen, came to visit Mom. Apparently she works on the same floor of Mom's room. This was quite encouraging.

It seems like Mom is adjusting to her new environment. The staff are still getting to know her, so her adjustment to this new facility will be a new adventure. Fortunately Mom has been more alert (aside from the oxycontin session), and is able to explain things like when her next chemotherapy treatment will be or what foods she cannot eat, but we still need to pray that the transition will be smooth.

On a side note, Youville does not have internet access available for visitors, so for those of you who read the blog regularly, there may be larger intervals between posts. Our apologies for this inconvenience.

Stephen